Full text of "Respiratory care : the official journal of the American Association for Respiratory Therapy"

NOVEMBER 2000
VOLUME 45

A MONTHLY SCIENCE JOURNAL
45TH YEAR— ESTABLISHED 1956

SPECIAL ISSUE

PALLIATIVE RESPIRATORY

CARE

PARTI

Foreword: Palliative Respiratory Care

Principles in Palliative Care: An Overview

Dyspnea Assessment

Dyspnea Treatment

Managing Secretions in Dying Patients

Pulmonary Rehabilitation in Palliative Care

Noninvasive Ventilation at the End of Life

Communicating with Patients and Their Families
about End-of-Life Care

Withdrawing Life-Sustaining Treatment in the ICU

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NOVEMBER 2000 / VOLUME 45 / NUMBER 11

FOR INFORMATION,
CONTACT:

AARC Membership or Other AARC
Services

American Association for Respira-
tory Care
11 030 Abies Ln
Dallas TX 75229-4593
(972) 243-2272 • Fax (972) 484-2720
http://www.aarc.org

Therapist Registration or Techni-
cian Certification

National Board for Respiratory

Care

8310Nieman Rd

LenexaKS 66214

(913) 599-4200 • Fax (913) 541-0156

http://www.nbrc.org

Accreditation of Education Pro-
grams

Committee on Accreditation for

Respiratory Care

1701 W Euless Blvd, Suite 300

Euless TX 76040

(817) 283-2835 • Fax (817) 354-8519

http://www.coarc.com

Grants, Scholarships, Community
Projects

American Respiratory Care Foun-
dation

11 030 Abies Ln
Dallas TX 75229-4593
(972) 243-2272 • Fax (972) 484-2720

AARC Government Affairs Office

Director of Govt Affairs

Jill Eicher

1225 King St, Second Floor

Alexandria VA 22314

(703) 548-8538 Fax (703) 548-8499

eicher@aarc.org

Director of State Govt Affairs
Cheryl West MHA
8630 Braeswood Pt. #2
Colorado Springs, CO 80920
(719) 535-9970 west@aarc.org

RE/PIRATORy
QiRE

RESPIRATORY CARE (ISSN 0020-1324, USPS 0489-
190) is published monthly by Daedalus Enterprises Inc. at
1 1030 Abies Une, Dallas TX 75229-4593. for the Amer-
ican Association for Respiratory Care. One volume is
published per year beginning each January. Subscription
rates are $75 per year in the US; $90 in all other countries
(for airmail, add $94).

The contents of the Journal are indexed in Index
Aferfjciu/MEDLINE. Hospital and Health Administration
Index, Cumulative Index to Nursing and Allied Health
Literature, EMBASE/Exerpta Medica, and RNdex Li-
brary Edition. Abridged versions of RESPIRATORY
Care are also published in Italian, French, and Japanese,
with permission from Daedalus Enterprises Inc.

Periodicals postage paid at Dallas TX and at additional
mailing offices. POSTMASTER: Send address changes to
Respiratory Care. Membership Office. Daedalus En-
terprises Inc. 1 1030 Abies Lane, Dallas TX 75229-4593.

@ i'rinted on acid-free paper.

Printed in the United States of America

SPECIAL ISSUE

State-ol-the-Art

Conference on Palliative

Respiratory Care

Part

CO-CHAIRS

Gordon D Rubenfeld MD MSc
J Randall Curtis MD MPH

CONFERENCE PROCEEDINGS

Foreword: Palliative Respiratory Care

by Gordon D Rubenfeld and J Randall Curtis — Seattle, Washington

Principles in Palliative Care: An Overview

by Joseph J Fins — New York, New York

Dyspnea Assessment

by Helen M Sorenson — Omaha, Nebraska

Dyspnea Treatment

by Harold L Manning — Lebanon, New Hampshire

Managing Secretions in Dying Patients
by Helen M Sorenson — Omaha, Nebraska

Role of Pulmonary Rehabilitation in Palliative Care

by John E Hejfner — Charleston, South Carolina

Noninvasive Ventilation at the End of Life
by Joshua O Benditt — Seattle, Washington

Communicating with Patients and Their Families about
Advance Care Planning and End-of-Life Care

by J Randall Curtis — Seattle, Washington

Withdrawing Life-Sustaining Treatment in the Intensive Care Unit

by Gordon D Rubenfeld — Seattle, Washington

BOOKS, FILMS, TAPES, & SOFTWARE

Handbook of Palliative Care (Faull C, Carter Y, Woof R, editors)

reviewed by Richard Mularski — Portland, Oregon

Evaluating Palliative Care: Establishing the Evidence Base (Robbins M)
reviewed by Anthony Back — Seattle, Washington

1318
1320
1331
1342
1355
1365
1376

1385
1399

1411
1412

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ALSO

IN THIS ISSUE

AARC Membership

1423

Application

Abstracts from

1296

Other Journals

Advertisers Index

1432

& Help Lines

Author

1432

Index

Call for Open

1421

FORUM Abstracts

1419

Calendar

Manuscript

1427

Preparation Guide

1425

MedWatch

1417 New Products

1418 Notices

RE/PIRATORy
CARE

A Monthly Science Journal
Established in 1956

The Official Journal of the

American Association for
Respiratory Care

CONTINUED..

Council of Ethical and Judicial Affairs Reports on End-of-Life Care (AMA)
reviewed by Betty A Ditillo — East Orange, New Jersey

Death and Dying Sourcebook (Muth AS, editor)
reviewed by Graeme Rocker — Halifax, Nova Scotia, Canada

Courage and Information for Life with Chronic Obstructive Pulmonary
Disease (Carter R, Nictotra B, Tucker J-V)
reviewed by Paul A Selecky — Newport Beach, California

Good If Not Great Living with Lung Disease (Peterson P)

reviewed by Julien M Roy, Thomas Reilly, and Kenny Moore— Daytona Beach, Florida

CORRECTIONS

Corrected Dosage

in Consensus Statement: Aerosols and Delivery Devices (Respir Care 2000:45(6): 589-596)

Corrected Symbol

in The Effects of Pressure Control Versus Volume Control Assisted Ventilation on
Patient Work of Breathing in Acute Lung Injury and the Acute Respiratory Distress
Syndrome (Respir Care 2000:45(9): 1085-1096)

CRCE THROUGH THE JOURNAL

2(X)0 Answer Key

412
413

414
415

416
416

431

COMING IN DECEMBER 2000

Proceedings of the

State-of-the-Art

Conference on

Palliative Respiratory Care

Part II

Co-Chairs

GORDON D RUBENFELD MD MSc
J RANDALL CURTIS MD MPH

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EDITORIAL OFFICE

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(206) 223-0558

Fax (206) 223-0563

www.rcjournaI.com

EDITOR IN CHIEF

A Monthly Science Journal
Established in 1956

The Official Journal of the

American Association for

Respiratory Care

David J Pierson MD FAARC
Harborview Medical Center
University of Washington
Seattle, Washington

ASSOCIATE EDITORS

Richard D Branson RRT FAARC
University of Cincinnati
Cincinnati, Ohio

Charles G Durbin Jr MD FAARC

University of Virginia
Charlottesville, Virginia

EDITORIAL BOARD

Dean R Hess PhD RRT FAARC

Massachusetts General Hospital
Harvard University
Boston, Massachusetts

James K StoUer MD

The Cleveland Clinic Foundation

Cleveland, Ohio

Alexander B Adams MPH RRT
FAARC

Regions Hospital
St Paul, Minnesota

Thomas A Barnes EdD RRT
FAARC

Northeastern University
Boston, Massachusetts

Michael J Bishop MD

Universitv of Washington
Seattle, Washington

Bartolome R Celli MD

Tufts University
Boston, Massachusetts

Robert L Chatbum RRT
FAARC

University- Hospitals of Cleveland
Case Western Reserve University
Cleveland, Ohio

James B Fink MS RRT FAARC

Hines VA Hospital
Loyola University
Chicago, Illinois

Luciano Gattinoni MD

University of Milan
Milan, Italy

John E Heffner MD

Medical University of South Carolina
Charleston, South Carolina

Mark J Heulitt MD FAARC

University of Arkansas
Little RocK Arliansas

SECTION EDITORS

Leonard D Hudson MD

Universitv of Washington
Seattle, Washington

Robert M Kacmarek PhD RRT
FAARC

Massachusetts General Hospital
Harvard University
Boston, Massachusetts

Toshihiko Koga MD
Koga Hospital
Kurume. Japan

Marin H KoUef MD
Washington University
St Louis, Missouri

Patrick Leger MD
Clinique Meaicale Edouard Rist
Paris, France

Neil R Maclntyre MD FAARC

Duke University
Durham, North Carolina

John J Marini MD
University of Minnesota
St Paul, Minnesota

Shelley C Mishoe PhD RRT
FAARC

Medical College of Georgia
Augusta, Georgia

Marcy F Petrini PhD
University of Mississippi
Jackson, Mississippi

Joseph L Rau PhD RRT FAARC

Georgia State University
Atlanta, Georgia

Catherine SH Sassoon MD

University of California Irvine
Long Beach, California

John W Shigeoka MD

Veterans Administration Medical Center

Salt Lake City, Utah

Arthur S Slutsky MD
St Michael's Hospital
Toronto, Ontario, Canada

Martin J Tobin MD
Loyola University
Chicago, Illinois

Jeffrey J Ward MEd RRT
Mayo Medical School
Rochester, Minnesota

Robert L Wilkins PhD RRT
FAARC

Loma Linda University
Loma Linda, California

STATISTICAL CONSULTANT

Gordon D Rubenfeld MD

University of Washington
Seattle, Washington

Hugh S Malhewson MD
Joseph L Rau PhD RRT FAARC
Drug Capsule

Charles G Irvin PhD

Gregg L Ruppel MEd RRT RPFT FAARC

PFT Comer

Richard D Branson RRT FAARC
Robert S Campbell RRT FAARC
Kittredge's Comer

Jon Nilsestuen PhD RRT FAARC
Ken Hargett RRT
Graphics Comer

Patricia Ann Doorley MS RRT
Charles G Durbin Jr MD FAARC
Test Your Radiologic Skill

Abstracts

Summaries of Pertinent Articles in Other Journals

Editorials, Commentaries, and Reviews To Note

Hope in the Terminally Dl-Rousseau P. West J Med 2000;173:117-118.

A Strategy to Improve Endobronchial Drug Administration (editorial) — Wenzel V, Prengel AW, Lindner
KH. Anesth Analg 2000;91:255-256.

Empiric Antibiotic Use and Resistant Microbes: A "Catch-22" for the 21st Century (editorial) — Man-
Ihous CA, Amoateng-Adjepong Y. Chest 2000;1 18:9-1 1.

Sleep-Related Breathing Disorders: Definitions and Measurements — McNicholas WT, Levy P. Eur Respir
J 2000;15:988-989.

Automatically Controlled Continuous Positive Airway Pressure: A Bright Past, a Dubious Future —

Rodenslein DO. Eur Respir J 2000;15:985-987.

Reference Value of Six-Minute Walking Distance in Healthy Middle- Aged and Older Subjects — Teramoto
S, Ohga E, Ishii T, Yamaguchi Y, Yamamoto H, Mastsuse T. Eur Respir J 2000:15:1 132-1 133.

A Little Conversation: Refiections of a Hospital Volunteer— Ault BW. West J Med 2000:173:141.

Let Us Recruit the Lung and Keep an Open Mind (editorial) — Suter PM. Intensive Care Med 2000:26:
491-492.

Palliative Care for Children — American Academy of Pediatrics. Com-
mittee on Bioethics and Committee on Hospital Care. Pediatrics 2000;
106:351-357.

This statement presents an integrated model for providing palliative care
for children living with a life-threatening or terminal condition. Advice
on the development of a palliative care plan and on working with parents
and children is also provided. Barriers to the provision of effective pe-
diatric palliative care and potential solutions are identified. The Ameri-
can Academy of Pediatrics recommends the development and broad avail-
ability of pediatric palliative care services based on child-specific
guidelines and standards. Such services will require widely distributed
and effective palliative care education of pediatric health care profes-
sionals. The Academy offers guidance on responding to requests for
hastening death, but does not support the practice of physician-assisted
suicide or euthanasia for children.

End-of-Life Decisions in Neonatal Intensive Care: Physicians' Self-
Reported Practices in Seven European Countries — EURONIC Study
Group. Cuttini M, Nadai M, Kaminski M, Hansen G, de Leeuw R, Lenoir
S, et al. Lancet 2000;355:21 12-2118.

BACKGROUND: The ethical issue of foregoing life-sustaining treat-
ment for newborn infants at high risk of death or severe disability is
extensively debated, but there is little information on how physicians in
different countries actually confront this issue to reach end-of-Iife deci-
sions. The EURONIC project aimed to investigate practices as reported
by physicians themselves. METHODS: The study recruited a large, rep-
resentative sample of 122 neonatal intensive-care units (NICUs) by cen-
sus (in Luxembourg, the Netherlands, and Sweden) or stratified random
sampling (in France, Germany, the UK, Italy, and Spain) with an overall
response rate of 86%. Physicians' practices of end-of-Iife decision-mak-

ing were investigated through an anonymous, self-administered question-
naire. 1235 completed questionnaires were returned (response rate 89%).
FINDINGS: In all countries, most physicians reported having been in-
volved at least once in setting limits to intensive care because of incur-
able conditions (61-96%); smaller proportions reported such involvement
because of a baby's poor neurological prognosis (46-90%). Practices
such as continuation of current treatment without intensification and
withholding of emergency manoeuvres were widespread, but withdrawal
of mechanical ventilation was reported by variable proportions (28-90%).
Only in France (73%) and the Netherlands (47%) was the administration
of drugs with the aim of ending life reported with substantial frequency.
Age, length of professional experience, and the importance of religion in
the physician's life affected the likelihood of reporting of non-treatment
decisions. INTERPRETATION: A vast majority of neonatologists in
European NICUs have been involved in end-of-life limitation of treat-
ments, but type of decision-making varies among countries. Culture-
related and other country-specific factors are more relevant than charac-
teristics of individual physicians or units in explaining such variability.

Propofol Without Muscle Relaxants for Conventional or Fiberoptic
Nasotracheal Intubation: A Dose-Finding Study — Andel H, Klunc G.
Andel D, Felfernig M, Donner A, Schramm W, Zimpfer M. Anesth
Analg 2000,91:458-461.

Endotracheal intubation has been performed during the administration of
propofol anesthesia without neuromuscular blockade. In this study, we
determined the propofol dose required for conventional nasotracheal or
for fiberoptic nasotracheal intubation of all patients. Thirty-two patients
undergoing maxillofacial surgery were randomly assigned to the conven-
tional (n = 16) or to the fiberoptic (n = 16) intubation group. In both
groups, anesthesia was induced by using I.V. fentanyl and I.V. titrated
propofol according to clinical need (spontaneous respiration rate, verbal

1296

Respiratory Care • November 2000 Vol 45 No 1 1

Make your plans now
to attend the

47th Annual

International

Respiratory

Congress

December 1-4, 2001

Y'all come next year.
Ya hear!

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INOmax

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FOR
INHAUTION

Please see full Prescribing Information following this ad.

INOmax® is indicated, in conjunction with ventilatory support and
other appropriate agents, for the treatment of term and near-term
(>34 weeks) neonates with hypoxic respiratory failure associated with
clinical or echocardiographic evidence of pulmonary hypertension,
where it improves oxygenation and reduces the need for extracorporeal
membrane oxygenation (ECMO) ^

INOmax® should not be used in neonates known to be dependent on right-to-left shunting of blood.
Abrupt discontinuation of INOmax® therapy may lead to worsening of blood oxygenation (PaO^) and
increasing pulmonary artery pressure (PAP). Deterioration in oxygenation and elevation in PAP may
also occur in children with no apparent response to INOmax®.

INOmax® should be administered with monitoring for PaO^, methemoglobin. and NO^. Methemoglobinemia
increases with the dose of nitric oxide. In clinical trials, maximum methemoglobin levels usually were
reached approximately 8 hours after initiation of inhalation, although methemoglobin levels have peaked
as late as 40 hours following initiation of INOmax® therapy.

Adverse events with an incidence of at least 5% on INOmax® therapy in the ClNRGl study, and that
were more common on INOmax® therapy than on placebo, include: hypotension (13%). withdrawal
(12%). atelectasis (9%). hematuria (8%). hyperglycemia (8%). sepsis (7%), infection (6%).
stridor (5%). and cellulitis (5%).

INOmax® should be administered through a system, such as the INOvent delivery system, that provides
operator-determined concentrations of nitric oxide in the breathing gas. a constant concentration
throughout the respiratory cycle, while limiting the generation of excessive inhaled nitrogen dioxide.

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INOmaX^'^(nitric oxide) for inhalation
100 and 800 ppm (parts per million)

DESCRIPTION

INOmax (nitric oxide gas) is a drug administered by Inhalation. Nitric
oxide, the active substance in INOmax, is a pulmonary vasodilator. INOmax
is a gaseous blend of nitric oxide (0.8%) and nitrogen (99.2%). INOmax is
supplied in aluminum cylinders as a compressed gas under high pressure
(2000 pounds per square inch gauge (psigj).

The structural formula of nitric oxide (NO) is shown below:

•N = 0:

CLINICAL PHARMACOLOGY

Nitric oxide is a compound produced by many cells of the body It relax-
es vascular smooth muscle by binding to the heme moiety of cytosolic
guanylate cyclase, activating guanylate cyclase and increasing intracellular
levels of cyclic guanosine 3',5'-monophosphate, which then leads to
vasodilation. When inhaled, nitric oxide produces pulmonary vasodilation.

INOmax appears to increase the partial pressure of arterial oxygen (Pa02)
by dilating pulmonary vessels in better ventilated areas of the lung, redis-
tributing pulmonary blood flovK away from lung regions with low ventila-
tion/perfusion (V/Q) ratios toward regions with normal ratios.

EHects on Pulmonary Vascular Tone In PPHN: Persistent pulmonary
hypertension of the newborn (PPHN) occurs as a primary developmental
defect or as a condition secondary to other diseases such as meconium
aspiration syndrome (MAS), pneumonia, sepsis, hyaline membrane dis-
ease, congenital diaphragmatic hernia (CDH), and pulmonary hypoplasia.
In these states, pulmonary vascular resistance (PVR) is high, which results
in hypoxemia secondary to right-to-left shunting of blood through the
patent ductus arteriosus and foramen ovale. In neonates with PPHN,
INOmax improves oxygenation (as indicated by significant increases in
Pa02).

PHARMACOKINETICS

The pharmacokinetics of nitric oxide has been studied in adults.
Uptake and Distribution: Nitric oxide is absorbed systemlcally after Inhala-
tion. Most of it traverses the pulmonary capillary bed where It combines
with hemoglobin that Is 60% to 100% oxygen-saturated. At this level of
oxygen saturation, nitric oxide combines predominantly with oxyhemoglo-
bin to produce methemoglobln and nitrate. At low oxygen saturation, nitric
oxide can combine with deoxyhemogiobin to transiently form nitrosylhe-
moglobin. which is converted to nitrogen oxides and methemoglobln upon
exposure to oxygen. Within the pulmonary system, nitric oxide can com-
bine with oxygen and water to produce nitrogen dioxide and nitrite, respec-
tively which interact with oxyhemoglobin to produce methemoglobln and
nitrate. Thus, the end products of nitric oxide that enter the systemic cir-
culation are predominantly methemoglobln and nitrate.

Metabolism: Methemoglobln disposition has been investigated as a func-
tion of time and nitric oxide exposure concentration in neonates with res-
piratory failure. The methemoglobln (MetHb) concentration-time profiles
during the first 12 hours of exposure to 0, 5, 20, and 80 ppm INOmax are
shown in Figure 1 .

Figure 1
Methemoglobln Concentration-Time Profiles
Neonates Inhaling 0, 5, 20 or 80 ppm INOmax

IN0m*ilppm(t.41)
tH0maiSppm(R-41)
IN0inix20ppm(H-3e)
INOmailOppin|n>3T)

Hourt of INOmsx Administration

Methemoglobln concentrations increased during the first 8 hours of nitric
oxide exposure. The mean methemoglobln level remained below 1% in the
placebo group and in the 5 ppm and 20 ppm INOmax groups, but reached
approximately 5% in the 80 ppm INOmax group. Methemoglobln levels
>7% were attained only in patients receiving 80 ppm, where they com-
prised 35% of the group. The average time to reach peak methemoglobln
was 10 ± 9 (SD) hours (median, 8 hours) in these 13 patients; but one
patient did not exceed 7% until 40 hours.

Elimination: Nitrate has been identified as the predominant nitric oxide
metabolite excreted in the urine, accounting for >70% of the nitric oxide
dose inhaled. Nitrate is cleared from the plasma by the kidney at rates
approaching the rate of glomerular filtration.

CLINICAL TRIALS

The efficacy of INOmax has been Investigated in term and near-term new-
borns with hypoxic respiratory failure resulting from a variety of etiologies.
Inhalation of INOmax reduces the oxygenation index (01= mean airway
pressure in cm H2O x fraction of inspired oxygen concentration [F1O2I x
100 divided by systemic arterial concentration in mm Hg (PaOoj) and
increases Pa02 (see CLINICAL PHARMACOLOGY).

(i) NINOS study: The Neonatal Inhaled Nitric Oxide Study (NINOS) group
conducted a double-blind, randomized, placebo-controlled, multlcenter
trial in 235 neonates with hypoxic respiratory failure. The objective of the
study was to determine whether Inhaled nitric oxide would reduce the
occurrence of death and/or Initiation of extracorporeal membrane oxy-
genation (ECMO) in a prospectively defined cohort of term or near-term
neonates with hypoxic respiratory failure unresponsive to conventional
therapy Hypoxic respiratory failure was caused by meconium aspiration
syndrome (MAS: 49%), pneumonla/sepsls (21%), idiopathic primary pul-
monary hypertension of the newborn (PPHN; 17%), or respiratory distress
syndrome (RDS; 11%). Infants <14 days of age (mean, 1.7 days) with a
mean Pa02 of 46 mm Hg and a mean oxygenation index (01) of 43 cm H2O
/ mm Hg were initially randomized to receive 100% Oo with (n=114) or
without (n=121 ) 20 ppm nitric oxide for up to 14 days. Response to study
drug was defined as a change from baseline In Pa02 30 minutes after start-
ing treatment (full response = >20 mm Hg, partial = 10-20 mm Hg, no
response = <10 mm Hg). Neonates with a less than full response were
evaluated for a response to 80 ppm nitric oxide or control gas. The primary
results from the NINOS study are presented in Table 1.

Table 1
Summary of Clinical Results from NINOS Study

Control
(n=121)

NO
(n=114)

P value

Death or ECMO ' "

77 (64%)

52 (46%)

0.006

Death
ECMO

20(17%)
66 (55%)

16(14%)
44 (39%)

0.60
0.014

^ Extracorporeal membrane oxygenation

" Death or need for ECMO was the study's primary end point.

Although the incidence of death by 120 days of age was similar In both
groups (NO, 14%; control, 17%), significantly fewer infants in the nitric
oxide group required ECMO compared with controls (39% vs. 55%, p
= 0.014). The combined incidence of death and/or initiation of ECMO
showed a significant advantage for the nitric oxide treated group (46%
vs. 64%, p = 0.006). The nitric oxide group also had significantly
greater Increases in PaOo and greater decreases In the 01 and the alve-
olar-arterial oxygen graoient than the control group (p<0.001 for all
parameters). Significantly more patients had at least a partial response
to the initial administration of study drug in the nitric oxide group
(66%) than the control group (26%, p<0.001). Of the 125 infants who
did not respond to 20 ppm nitric oxide or control, similar percentages
of NO-treated (18%) and control (20%) patients had at least a partial
response to 80 ppm nitric oxide for Inhalation or control drug, sug-
gesting a lack of additional benefit for the higher dose of nitric oxide. JjJU
No infant had study drug discontinued for toxicity. Inhaled nitric oxide —
had no detectable effect on mortality. The adverse events collected In J^
the NINOS trial occurred at similar incidence rates in both treatment ^m
groups (see ADVERSE REACTIONS). Follow-up exams were per-
formed at 18-24 months for the Infants enrolled In this trial. In the
infants with available follow-up, the two treatment groups were simi-
lar with respect to their mental, motor, audiologic, or neurologic eval-
uations.

(II) CINRGI study: This study was a double-blind, randomized, place-
bo-controlled, multicenter trial of 186 term and near term neonates
with pulmonary hypertension and hypoxic respiratory failure. The pri-
mary objective of the study was to determine whether INOmax would
reduce the receipt of ECMCi in these patients. Hypoxic respiratory fail-
ure was caused by MAS (35%), idiopathic PPHN (30%),
pneumonia/sepsis (24%), or RDS (8%). Patients with a mean Pa02 of 54
mm Hg and a mean 01 of 44 cm H2O / mm Hg were randomly assigned to
receive either 20 ppm INOmax (n=97) or nitrogen gas (placebo; 0=89) in
addition to their ventilatory support. Patients who exhibited a Pa02 >60
mm Hg and a pH <7.55 were weaned to 5 ppm INOmax or placebo. The
primary results from the CINRGI study are presented In Table 2.

Table 2
Summary ol Clinical Results from CINRGI Study

Placebo

INOmax

P value

ECMO '■"

51/89 (57%)

30/97(31%)

< 0.001

Death

5/89 (6%)

3/97 (3%)

0.48

^ Extracorporeal membrane oxygenation

" ECMO was the primary end point of this study

Significantly fewer neonates in the INOmax group required ECMO com-
pared to the control group (31% vs. 57%, p<0.001). While the number of
deaths were similar in both groups (INOmax, 3%; placebo, 6%), the com-
bined incidence of death and/or receipt of ECMO was decreased in the
INOmax group (33% vs. 58%, p<0.001).

In addition, the INOmax group had significantly improved oxygenation as
measured by Pa02, 01, and alveolar-arterial gradient (p<().001 for all
parameters). Of the 97 patients treated with INOmax, 2 (2%) were with-
drawn from study drug due to methemoglobln levels >4%. The frequency
and number of adverse events reported were similar in the two study
groups (see ADVERSE REACTIONS).

INDICATIONS

iNOmax. in conjunction with ventilatory support and other appropriate
agents, is indicated for the treatment of term and near-term (>34 weeks)
neonates with hypoxic respiratory failure associated with clinical or
echocardiographic evidence of pulmonary hypertension, where it improves
oxygenation and reduces the need for extracorporeal membrane oxygena-
tion.

CONTRAINDICATIONS

INOmax should not be used in the treatment of neonates Icnown to be
dependent on right-to-left shunting of blood.

PRECAUTIONS
Rebound

Abrupt discontinuation of INOmax may lead to worsening oxygenation and
increasing pulmonary artery pressure.

Methemoglobinemia

Methemogloginemia increases with the dose of nitric oxide. In the clinical
trials, maximum methemoglobin levels usually were reached approximate-
ly 8 hours after initiation of inhalation, although methemoglobin levels have
peaked as late as 40 hours following initiation of INOmax therapy In one
study, 13 of 37 (35%) of neonates treated with INOmax 80 ppm had methe-
moglobin levels exceeding 7%. Following discontinuation or reduction of
nitric oxide the methemoglobin levels returned to baseline over a period of
hours.

Elevated NO2 Levels

In one study NO2 levels were <0.5 ppm when neonates were treated with
placebo, 5 ppm, and 20 ppm nitric oxide over the first 48 hours. The 80
ppm group had a mean peak NO2 level of 2.6 ppm.

Drug Interactions

No formal drug-interaction studies have been performed, and a clinically
significant Interaction with other medications used in the treatment of
hypoxic respiratory failure cannot be excluded based on the available data.
In particular, although there are no data to evaluate the possibility nitric
oxide donor compounds, including sodium nitroprusside and nitroglycerin,
may have an additive effect with INOmax on the risk of developing methe-
moglobinemia. INOmax has been administered with tolazoline, dopamine,
dobutamine, steroids, surfactant, and high-frequency ventilation.

Carcinogenesis, Mutagenesis, Impairment ot Fertility

No long-term studies in animals to evaluate the carcinogenic potential of
nitric oxide have been performed. Nitric oxide has demonstrated genotoxi-
clty in Salmonella (Ames Test), human lymphocytes, and after in wVo expo-
sure in rats. There are no animal or human studies to evaluate nitric oxide
for effects on fertility or harm to the developing fetus.

Pregnancy: Category C

Animal reproduction studies have not been conducted with INOmax. It is
not known if INOmax can cause fetal harm when administered to a preg-
nant woman or can affect reproductive capacity. INOmax is not intended
for adults.

Pediatric Use

Nitric oxide for inhalation has been studied in a neonatal population (up to
14 days of age). No information about its effectiveness in other age popu-
lations is available.

Nursing Mothers

Nitric oxide is not indicated for use in the adult population, including nurs-
ing mothers. It is not known whether nitric oxide is excreted in human milk.

ADVERSE REACTIONS

Controlled studies have included 325 patients on INOmax doses of 5 to 80
ppm and 251 patients on placebo. Total mortality in the pooled trials was
11% on placebo and 9% on INOmax, a result adequate to exclude INOmax
mortality being more than 40% worse than placebo.

In both the NINOS and CINRGI studies, the duration of hospitalization was
similar in INOmax and placebo-treated groups.

From all controlled studies, at least 6 months of follow-up is available for
278 patients who received INOmax and 212 patients who received placebo.
Among these patients, there was no evidence of an adverse effect of treat-
ment on the need for rehospitalization, special medical services, pulmonary
disease, or neurological sequelae.

In the NINOS, treatment groups were similar with respect to the incidence
and severity of intracranial hemorrhage: Grade IV hemorrhage, periventric-
ular leukomalacia, cerebral infarction, seizures requiring anticonvulsant
therapy, pulmonary hemorrhage, or gastrointestinal hemorrhage.

The table below shows adverse events with an incidence of at least 5%
on INOmax in the CINRGI study, and that were more common on
INOmax than on placebo.

ADVERSE EVENTS IN THE CINRGI TRIAL

Advene Event

Placebo (n:89)

Inhaled NO (n=97)

Hypotension

9 (10%)

i3C;3%;

Withdrawal

9 (10%)

n(i2%>

Atelectasis

8 (9%)

9 (9%)

Hematuria

5 (6%)

8 (8%)

Hyperglycemia

6(7%)

8 (8%)

Sepsis

2 (2%)

7 (7%)

Infection

3 (3%)

6 (6%)

Stridor

3(3%)

5 (5%)

Cellulitis

(0%)

i(5%)

OVERDOSAGE

Overdosage with INOmax will be manifest by elevations in methemoglobin
and NO2. Elevated NOo may cause acute lung injury. Elevations in methe-
moglobinemia reduce The oxygen delivery capacity of the circulation. In
clinical studies. NOo levels >3 ppm or methemoglobin levels >7% were
treated by reducing the dose of, or discontinuing, INOmax.

Methemoglobinemia that does not resolve after reduction or discontinua-
tion of therapy can be treated with intravenous vitamin C, intravenous
methylene blue, or blood transfusion, based upon the clinical situation.

DOSAGE AND ADMINISTRATION
Dosage

The recommended dose of INOmax is 20 ppm. Treatment should be main-
tained up to 14 days or until the underlying oxygen desaturation has
resolved and the neonate is ready to be weaned from INOmax therapy.

An initial dose of 20 ppm was used in the NINOS and CINRGI trials. In
CINRGI, patients whose oxygenation improved with 20 ppm were dose-
reduced to 5 ppm as tolerated at the end of 4 hours of treatment. In the
NINOS trial, pahents whose oxygenation failed to improve on 20 ppm could
be increased to 80 ppm, but those patients did not then improve on the
higher dose. As the risk of methemoglobinemia and elevated NOp levels
increases significantly when INOmax is administered at doses >a) ppm,
doses above this level ordinarily should not be used.

Administration

Additional therapies should be used to maximize oxygen delivery. In
patients with collapsed alveoli, additional therapies might include surfac-
tant and high frequency oscillatory ventilation.

The safety and effectiveness of inhaled nitric oxide have been established
in a population receiving other therapies for hypoxic respiratory failure,
including vasodilators, intravenous fluids, bicarbonate therapy and
mechanical ventilation. Different dose regimens for nitric oxide were used
in the clinical studies (see CLINICAL STUDIES).

INOmax should be administered with monitoring for Pa02, methemoglo-
bin, and NO2.

The nitric oxide delivery systems used in the clinical trials provided opera-
tor-determined concentrations of nitric oxide in the breathing gas, and the
concentration was constant throughout the respiratory cycle. INOmax
must be delivered through a system with these characteristics and which
does not cause generation of excessive inhaled nitrogen dioxide. The
INOvent™ system and other systems meeting these criteria were used in
the clinical trials. In the ventilated neonate, precise monitoring of inspired
nitric oxide and NO2 should be instituted, using a properiy calibrated analy-
sis device with alarms. The system should be calibrated using a precisely
defined calibration mixture of nitric oxide and nitrogen dioxide, such as
INOcal™. Sample gas for analysis should be drawn before the Y-piece,
proximal to the patient. Oxygen levels should also be measured.

In the event of a system failure or a wall-outlet power failure, a backup bat-
tery power supply and reserve nitric oxide delivery system should be avail-
able.

The INOmax dose should not be discontinued abruptly as it may result in
an increase in pulmonary artery pressure (PAP) and/or worsening of blood
oxygenation (Pa02). Deterioration in oxygenation and elevation in PAP
may also occur in children with no apparent response to INOmax.
Discontinue/wean cautiously

HOW SUPPLIED

INOmax (nitric oxide) is available in the following sizes:

Size D Portable aluminum cylinders containing 353 liters at STP of
nitric oxide gas in 800 ppm concentration in nitrogen (deliv-
ered volume 344 liters) (NDC 64693-002-01 )

Size D Portable aluminum cylinders containing 353 liters at STP of
nitric oxide gas in 100 ppm concentration in nitrogen (deliv-
ered volume 344 liters) (NDC 64693-001-01 )

Size 88 Aluminum cylinders containing 1963 liters at STP of nitric
oxide gas in 800 ppm concentration in nitrogen (delivered
volume 1918 liters) (NDC 64693-002-02 )

Size 88 Aluminum cylinders containing 1963 liters at STP of nitric
oxide gas in 100 ppm concentration in nitrogen (delivered vol-
ume 1918 liters) (NDC 64693-001-02 )

Store at 25=C (77'F) with excursions permitted between 15-3080 (59-86'F)
[see USP Controlled Room Temperature).

Occupational Exposure

The exposure limit set by the Occupational Safety and Health
Administration (OSHA) for nitric oxide is 25 ppm, and for NO2 the limit is
5 ppm.

CAUTION

Federal law prohibits dispensing without a prescription.

INO Therapeutics, Inc
54 Old Highway 22
Clinton, NJ 08809
USA

Abstracts

response). An endotracheal tube was placed nasally in the pharynx and
the vocal cords visualized by using a fiberscope inserted via the tube. In
the conventional group, the larynx was visualized additionally with a
laryngoscope blade (Miller). In both groups propofol was titrated until
the vocal cords opened. Patients were tracheally intubated, and the propo-
fol dose was recorded. In all patients, the trachea could be intubated
without the use of muscle relaxants. Considerable interindividual differ-
ences of dose requirements were observed. The amount of propofol re-
quired in the conventional group was significantly (p < 0.0001) larger
(median ± SD: 2.74 ± 1.59 mg/kg; range 1.95-7.07 mg/kg) than in the
fiberoptic group (1.37 ± 0.59 mg/kg; 0.72-2.86 mg/kg). Hemodynamics
remained stable in all patients. Postintubational hoarseness occurred in
three patients of each group. Fiberoptic nasal intubation without a muscle
relaxant can be facilitated with significantly smaller and more predictable
dosages of propofol than conventional nasal endotracheal intubation. The
possibility of titrating the propofol dose under assisted ventilation until
the vocal cords open during fiberoptic nasotracheal intubation and the
better predictability of the required dose favors the fiberoptic approach.
Implications: In this study, contrary to all preceding studies using pre-
defined doses of propofol and opioids, we determined the minimal re-
quired propofol dose in combination with fentanyl for conventional or
fiberoptic nasotracheal intubation without muscle relaxants.

A Comparison of Distilled Water and Normal Saline As Diluents for
Endobronchial Administration of Epinephrine in the Dog — Naganobu

K, Hasebe Y, Uchiyama Y, Hagio M, Ogawa H. Anesth Analg 2000;91:
317-321.

We compared the effects of distilled water and normal saline as diluents
for the endobronchial administration of epinephrine in anesthetized dogs
by using a cross-over design. Six dogs received 2 mL of either normal
saline or distilled water into the bronchus, and the other solution was
administered 1 wk later. Eight dogs received 0.02 mg/kg epinephrine
diluted in either distilled water (E -I- water) or normal saline (E -I- saline)
to a total volume of 2 mL into the bronchus, and the other solution was
administered 1 wk later. Normal saline or distilled water without epi-
nephrine did not affect the plasma epinephrine concentration, mean ar-
terial pressure (MAP), and P^qv The peak plasma epinephrine concen-
tration was significantly larger after treatment with E -I- water (26.5 ±
7.9 ng/mL) than after E + saline (2.1 ± 0.7 ng/mL). E 4- water caused
an increase in MAP of 91 ±24 mm Hg, whereas E + saline did not
affect MAP. The maximal decrease in P,o, after the administration of
E + water (14 ± 5 mm Hg) was significantly greater than after E -I-
saline (7 ± 2 mm Hg). In conclusion, distilled water as the diluent for
endobronchially administered epinephrine to a total volume of 2 mL
allowed better absorption of epinephrine compared with normal saline
without a serious detrimental effect on P„oj. Implications: Using a small
volume of distilled water as the diluent for endobronchial epinephrine
administration significantly increased epinephrine absorption and arterial
pressure in comparison with normal saline, without having a serious
detrimental effect on P^q^, in an anesthetized, noncardiopulmonary, re-
suscitation dog model.

Intraoperative Use of Inhaled PGI2 for Acute Pulmonary Hyperten-
sion and Right Ventricular Failure — Schroeder RA, Wood GL, Plotkin
JS, Kuo PC. Anesth Analg 2000;91:291-295.

Implications: Inhaled prostacyclin (PGIj) can be used as an effective
pulmonary vasodilator intraoperatively to treat pulmonary hypertension
and impending right ventricular failure.

Low-Dose Inhaled Corticosteroids and the Prevention of Death from
Asthma — Suissa S, Ernst P, Benayoun S, Ballzan M, Cai B. N Engl
J Med 2000;343:332-336.

BACKGROUND: Although inhaled corticosteroids are effective for the
treatment of asthma, it is uncertain whether their use can prevent death
from asthma. METHODS: We used the Saskatchewan Health data bases
to form a population-based cohort of all subjects from 5 through 44 years
of age who were using antiasthma drugs during the period from 1975
through 1991. We followed subjects until the end of 1997, their 55th
birthday, death, emigration, or termination of health insurance coverage;
whichever came first. We conducted a nested case-control study in which
subjects who died of asthma were matched with controls within the
cohort according to the length of follow-up at the time of death of the
case patient (the index date), the date of study entry, and the severity of
asthma. We calculated rate ratios after adjustment for the subject's age
and sex; the number of prescriptions of theophylline, nebulized and oral
beta-adrenergic agonists, and oral corticosteroids in the year before the
index date; the number of canisters of inhaled beta-adrenergic agonists
used in the year before the index date; and the number of hospitalizations
for asthma in the two years before the index date. RESULTS: The cohort
consisted of 30,569 subjects. Of the 562 deaths, 77 were classified as due
to asthma. We matched the 66 subjects who died of asthma for whom
there were complete data with 2681 controls. Fifty-three percent of the
case patients and 46 percent of the control patients had used inhaled
corticosteroids in the previous year, most commonly low-dose beclometha-
sone. The mean number of canisters was 1.18 for the patients who died
and 1.57 for the controls. On the basis of a continuous dose-response
analysis, we calculated that the rate of death from asthma decreased by
21 percent with each additional canister of inhaled corticosteroids used in
the previous year (adjusted rate ratio, 0.79; 95 percent confidence inter-
val, 0.65 to 0.97). The rate of death from asthma during the first three
months after discontinuation of inhaled corticosteroids was higher than
the rate among patients who continued to use the drugs. CONCLU-
SIONS: The regular use of low-dose inhaled corticosteroids is associated
with a decreased risk of death from asthma.

A Case for Multisite Studies in Critical Care — Lindquist R, Treat-
Jacobson D, Watanuki S. Heart Lung 2000;29:269-277.

Studies in critical care settings are essential to improve critical care
practice. Critical care research conducted at a single site may be limited
with respect to sample size leading to large type II error, diminished
statistical power, decreased generalizability, and inconclusive results.
Multiple-site studies are more likely to change nursing practice in critical
care. They allow for larger sample size, broader sampling, faster accrual
rates, and meaningful subgroup analyses. Successful multisite research
requires more thorough planning, and deliberate steps are required to
ensure its feasibility and acceptability. Multisite research protocols can
be challenging regarding communication, reliability, and data integrity.
However, defining and addressing these challenges and selecting subjects
and settings appropriately can lead to results that are more generalizable
and relevant to practice.

Effect of the Passy-Muir Tracheostomy Speaking Valve on Pulmo-
nary Aspiration in Adults — Elpem EH, Okonek MB, Bacon M, Gers-
tung C, Skrzynski M. Heart Lung 2000;29:287-293.

PURPOSE: We determined instances of aspiration in adults with trache-
ostomies and investigated the effect of the Passy-Muir tracheostomy
speaking valve on occurrences of aspiration. METHODS: Adults with
tracheostomies scheduled for videofiuoroscopic swallowing examinations
who met inclusion criteria were enrolled. According to study protocol, 6
presentations of thin liquids were recorded, 3 with and 3 without the
Passy-Muir tracheostomy speaking valve. If a cuffed tube was present,
the cuff was defiated fully for all presentations. RESULTS: Seven of 15
subjects aspirated material on 1 or more presentations of thin liquid. Five
subjects aspirated material only with the Passy-Muir tracheostomy speak-
ing valve off, whereas 2 subjects aspirated material with and without the

1302

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Abstracts

valve. No subject aspirated material while the valve was on exclusively.
Aspiration was significantly less frequent with the Passy-Muir tracheos-
tomy speaking valve on than with it off. CONCLUSIONS: Clinically
unapparent aspiration occurs commonly in patients with tracheostomies.
An expiratory occlusive valve can reduce, though not eliminate, occur-
rences of aspiration.Clinical Implication: The benefit of the Passy-Muir
tracheostomy speaking valve should be evaluated in selected patients
who aspirate liquid.

Adult Respiratory Distress Syndrome CompUcatiiig Plasmodium Falcipa-
rum Malaria— Asiedu DK, Sherman CB. Heart Lung 2000;29:294-297.

In people who do not have clinical immunity to malaria, infection with
the malaria parasite could lead to severe complications. We describe a
patient who had acute and severe lung injury from malaria. A 37-year-old
woman had a 24-hour history of generalized weakness and chills 2 days
after returning from Nigeria. She had received mefloquine as prophy-
laxis, but the patient did not take the medication. On admission, a thick
blood smear revealed severe Plasmodium falciparum parasitemia. She
was given doxycycline and quinine, but as her parasitemia resolved,
dyspnea and hypoxemia developed and she consequently required place-
ment of an endotracheal tube. Chest radiography results showed bilateral
and diffuse infiltrate. This report shows that patients with P falciparum
malaria should be monitored closely and transferred to an intensive care
unit for additional management if respiratory distress develops. Physi-
cians caring for patients who have recently traveled to malaria-endemic
areas need to anticipate the possible development of malaria with all of
its complications, including acute lung injury.

Amniotic Fluid Embolism— Green BT, Umana E. South Med J 2000;
93:721-723.

Amniotic fluid embolism is a rare occurrence, with no single pathogno-
monic clinical or laboratory finding. Diagnosis is based on clinical pre-
sentation and supportive laboratory values. We describe the case of a
17-year-old nulliparous woman at 27 weeks' gestation who had uterine
bleeding, hematuria, hemoptysis, hypotension, dyspnea, and hypoxemia
within 30 minutes of vaginal delivery. Laboratory values revealed diffuse
intravascular coagulation. Chest films were consistent with adult respi-
ratory distress syndrome. Pulmonary artery catheterization revealed mod-
erately increased pulmonary capillary wedge pressure. Supportive mea-
sures, including oxygenation, fluid resuscitation, and plasma, were
administered. Central hemodynamic monitoring and inotropic support
were necessary. Our patient recovered uneventfully and 6 weeks later
was living an unrestricted life-style.

Massive Left Diaphragmatic Separation and Rupture due to Cough-
ing During an Asthma Exacerbation — Kallay N, Crim L, Dunagan DP,
Kavanagh PV, Meredith W, Haponik EF. South Med J 2000;93:729-731.

We report a case of herniation of abdominal contents into the left hemi-
thorax in a patient hospitalized with an acute exacerbation of asthma
accompanied by paroxysms of coughing. There was no history of trauma.
We believe this is the first reported case of diaphragmatic rupture com-
plicating an asthma exacerbation. We review clinical features, patho-
physiology, diagnosis, and treatment of diaphragmatic rupture in its most
common setting, trauma, and discuss its occasional "spontaneous" oc-
currence.

Is the Leak Test Reproducible? — Pettignano R, HoUoway SB, Hyman
D, UBuz M. South Med J 2000;93:683-685.

BACKGROUND: The leak test is an accepted practice for evaluating
airway edema and patient readiness for extubation. Reproducibility and
interobserver reliability for this test have not been established. We stud-

ied the reproducibility and reliability of the leak test in and among health
care professionals. METHODS: Thirteen consecutive intubated patients
were tested in triplicate and in blinded fashion by three observers to
determine the leak around the endotracheal lube before extubation. All
patients were pharmacologically paralyzed and sedated before assess-
ment. RESULTS: Neither interobserver or intraobserver variability was
statistically significant when a standardized method was used to deter-
mine the leak. CONCLUSION: The leak test is reliable by the same or
different observers regardless of varied clinical experience when using a
standardized approach to measuring the leak.

Effects of Nitric Oxide Inhalation After Pulmonary Thromboendar-
terectomy for Chronic Pulmonary Thromboembolism — Imanaka H,
Miyano H, Takeuchi M, Kumon K, Ando M. Chest 2000; 1 18:39-46.

Study objectives: To examine the hypothesis that nitric oxide (NO) in-
halation improves hemodynamics and gas exchange in patients with
chronic pulmonary thromboembolism after pulmonary thromboendarter-
ectomy. DESIGN: Prospective crossover clinical study. SETTING: Sur-
gical ICU in a national education and research hospital. PATIENTS:
Seven patients (mean age ± SD, 54 ± 1 1 years) who underwent elective
pulmonary thromboendarterectomy for chronic pulmonary thromboem-
bolism. INTERVENTIONS: Patients breathed 20 parts per million of NO
gas for 30 min at 12-h intervals until extubation of the trachea. Measure-
ments and results: Hemodynamics and arterial blood gas levels were
analyzed before, during, and after NO inhalation. Waveform of pulmo-
nary artery pressure (PAP) was evaluated using fractional pulse pressure
(PPf): (systolic PAP - diastolic PAP)/mean PAP. After surgery, pulmo-
nary vascular resistance decreased, PPf decreased, and cardiac index
increased significantly. At the first trial, NO inhalation resulted in a slight
improvement in arterial oxygen tension (from 173 ± 33 to 196 ± 44 mm
Hg; p < 0.05), while hemodynamics did not change significantly. Twelve
hours later, NO inhalation decreased pulmonary vascular resistance index
(from 312 ± 98 to 277 ± 93 dyne ' s ' crn^lm^: p < 0.01), while the
change in oxygenation was not significant. CONCLUSIONS: Immedi-
ately after pulmonary thromboendarterectomy for chronic pulmonary
thromboembolism, NO inhalation improved oxygenation; at 12 h after
surgery, NO inhalation resulted in decreased pulmonary vascular resis-
tance, although both changes were small.

Role of Respiratory Function in Exercise Limitation in Chronic Heart
Failure — Chauhan A, Sridhar G, Clemens R, Krishnan B, Marciniuk
DD, Gallagher CG. Chest 2000; 1 18:53-60.

OBJECTIVE: To test the hypothesis that respiratory function contributes
to limit maximal exercise performance in patients with chronic heart
failure by using the technique of dead space loading during exercise.
DESIGN: Blinded subjects underwent two maximal incremental exercise
tests in random order on an upright bicycle ergometer: one with and one
without added dead space. SETTING: Tertiary-care university teaching
hospital. SUBJECTS: Seven patients with stable chronic heart failure
(mean ± SEM left ventricular ejection fraction, 27 ± 3%). RESULTS:
Subjects were able to significantly increase their peak minute ventilation
during exercise with added dead space when compared with control
exercise (57.4 ± 5.9 vs 50.0 ± 5.6 L/min; p < 0.05). Peak oxygen
uptake, workload, heart rate, and exercise duration were not significantly
different between the added dead space and control tests. Breathing pat-
tern was significantly deeper and slower at matched levels of ventilation
during exercise with added dead space. CONCLUSION: Because pa-
tients with chronic heart failure had significant ventilatory reserve at the
end of exercise and were able to further increase their maximal minute
ventilation, we conclude that respiratory function does not contribute to
limitation of exercise in patients with chronic heart failure.

1304

Respiratory Care • November 2000 Vol 45 No 1 1

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Abstracts

Maximum Insufflation Capacity — Kang SW, Bach JR. Chest 2000;
118:61-65.

OBJECTIVE: To investigate the effect of deep lung insufflations on
maximum insufflation capacities (MICs) and peak cough flows (PCFs)
for patients with neuromuscular disease. METHOD: Forty-three patients
with neuromuscular disease were trained in stacking delivered volumes
of air to deep lung insufflation and were prescribed a program of air
stacking once their vital capacities (VCs) were noted to be < 2,000 rtiL.
VC, MIC, and unassisted and assisted PCF were monitored. The initial
data were compared with the highest MICs subsequently achieved. For
those patients whose MICs only decreased, we compared the initial data
with the most recent data. RESULTS: The MICs increased from (mean ±
SD) 1 ,402 ± 530 mL to 1 ,7 1 1 ± 599 mL (p < 0.00 1 ) for 30 patients and
only decreased for 13 patients. Patients for whom the MICs increased
also had a significant increase in assisted PCF from 3.7 ± 1.4 to 4.3 ±
1.6 L/s (p < 0.05) despite having somewhat decreasing VCs and unas-
sisted PCFs. CONCLUSION: With training, the capacity to stack air to
deep insufflations can improve despite progressive neuromuscular dis-
ease. This can result in increased cough effectiveness.

Allergic Bronchopulmonary Aspergillosis in the Asthma Clinic: A
Prospective Evaluation of CT in the Diagnostic Algorithm — Eaton T,
Garrett J, Milne D, Frankel A, Wells AU. Chest 2000; 1 18:66-72.

OBJECTIVE: Allergic bronchopulmonary aspergillosis (ABPA) occurs
in cases of atopic asthma and may result in important lung disease. Early
diagnosis is essential as this disease is responsive to steroids. However,
while asthma is common, ABPA is infrequently diagnosed. CT allows
precision in the diagnosis of central bronchiectasis (which is virtually
pathognomonic of ABPA) and may enable earlier diagnosis. DESIGN: A
prospective evaluation of 255 patients with asthma for ABPA, using skin
prick testing (SPT) for Aspergillus fumigatus (AF) as a screening tool and
incorporating CT into the diagnostic algorithm. SETTING: Asthma clinic.
Green Lane Hospital, Auckland, New Zealand. PARTICIPANTS: Pa-
tients with asthma. INTERVENTIONS: ABPA was diagnosed using "es-
sential" criteria (ie, asthma, SPT positivity to AF, elevated serum total
IgE, elevated serum AF-specific IgE, and pulmonary infiltrates seen on
chest radiography or central bronchiectasis seen on CT scan) and "min-
imal essential" criteria (ie, asthma, SPT positivity, and central bronchi-
ectasis). Measurements and results: Two hundred fifty-five consecutive
patients with asthma who consented to SPT were studied: 218 of 255
patients (86.8%) were atopic; and 47 of 255 patients (21. 6%) were
AF-positive, of whom 35 accepted further evaluation including CT scan-
ning. A secure diagnosis of ABPA, satisfying all essential criteria, was
evident in 9 of 35 patients (25.7%), a proportion that increased to 13 of
35 patients (37.1%) by using the minimal essential diagnostic criteria.
CONCLUSIONS: SPT positivity to AF was present in approximately
20% of patients in the asthma clinic. A diagnosis of ABPA is disclosed
by CT in 25 to 40% of SPT-positive patients, depending on the selection
of diagnostic criteria. These findings support the use of SPT as a screen-
ing tool in the asthma clinic and indicate that a routine CT scan is
warranted in SPT-positive patients.

Thoracoscopy and Talc Poudrage in the Management of Hepatic
Hydrothorax — de Campos JR, Filho LO, Werebe Ed, Sette H Jr, Fer-
nandez A, Filomeno LT, Jatene FB. Chest 2000; 1 18:13-17.

Study objective: To determine indications, limitations, morbidity and
mortality of surgical thoracoscopy for management of hepatic hydrotho-
rax, a rare, but often recurrent, complication in cirrhotic patients. Patients
and methods: From May 1985 through May 1999, 10 men and 8 women,
with a mean age of 57.6 years (range, 26 to 76 years), underwent 21
therapeutic thoracoscopies to achieve pleurodesis by application of talc.
RESULTS: The procedure was effective in 10 of 21 procedures. There

were four recurrences (19.1%) that were retreated, with only one being
successful. In this specific group, we detected high morbidity (57.1%)
and mortality (38.9%) during the follow-up period of 3 months. Dia-
phragmatic defects were localized and closed five times (23.8%). Hos-
pital stay was approximately 15 days (range, 5 to 41 days). CONCLU-
SION: The procedure appears to be indicated for these fragile patients,
especially when medical therapy fails. Immediate efficacy was 47.6%,
increasing to 60% with videothoracoscopy and suture of the diaphrag-
matic defect. However, morbidity and mortality were high.

Validation of an Instrument Measuring Patient Satisfaction with
Chest Physiotherapy Techniques in Cystic Fibrosis — Oermann CM,
Swank PR, Sockrider MM, Chest 2000;118:92-97.

OBJECTIVES: Chest physiotherapy (CPT) has been an important part of
cystic fibrosis (CF) treatment regimens for > 40 years. Techniques with
different perceived costs, benefits, and patient satisfaction exist. An in-
strument measuring patient satisfaction with CPT has not been reported.
Our goal was to develop and validate such an instrument. DESIGN: A
cross-sectional survey sent to 349 patients seen at a large, urban, aca-
demic CF care center. The two-page survey asked 17 questions related to
CPT satisfaction (efficacy, convenience, comfort, overall satisfaction),
followed by 4 general CF-care questions (disease severity, importance of
therapies, prescribed vs missed therapies). A 5-point Likert-type scale
was used for responses. Psychometric analysis included itemetric perfor-
mance, confirmatory factor analysis, test-retest reliability, and evaluation
of subject's responses to the general CF-care questions. RESULTS: One
hundred twenty-nine individuals returned completed surveys (39%; 66
males and 63 females; age range, 2 months to 47 years). FEV, values
were 21 to 155% predicted (mean, 76%; n = 82). Disease severity was
as follows: 60 mild, 47 moderate, and 14 severe. Seventy-nine subjects
used postural drainage, percussion, and vibration (PDPV), 21 used a
flutter device, and 14 used high-frequency chest wall oscillation (HF-
CWO). Five subjects used more than one technique. Internal consistency
analysis found an overall coefficient alpha of 0.87 (range, 0.74 to 0.89 for
four domains). Factor analysis demonstrated domains for efficacy, con-
venience, comfort, and overall satisfaction. Mean total satisfaction scores
differed significantly among therapies (R^ = 0. 118; F[ 2,111] = 7.56;
p = 0.0008): PDPV, 3.8 (SD = 0.6); Flutter, 4. 3 (SD = 0.5); and
HFCWO, 4. 1 (SD = 0.5). Therapies also differed significantly on all
subscores. Perceived importance of CPT and compliance with CPT in-
creased linearly with disease severity. Overall satisfaction was positively
correlated with CPT compliance. CONCLUSIONS: The CPT satisfaction
survey has good reliability and content validity. Significant differences in
patient satisfaction exist among therapies. Sicker patients recognize the
importance of, and demonstrate better compliance with prescribed CPT.
Increased satisfaction is associated with better compliance with therapy.

Pregnancy in Cystic Fibrosis : Fetal and Maternal Outcome — Gill-
jam M, Antoniou M, Shin J, Dupuis A, Corey M, Tullis DE. Chest
2000;118:85-91.

OBJECTIVE: To assess the effect of pregnancy on pulmonary function
and survival in women with cystic fibrosis (CF) and to assess the fetal
outcome. DESIGN: Cohort study. The data analyzed were collected from
the Toronto CF database, chart review, and patient questionnaire. SET-
TING: Tertiary-care center. PATIENTS: All women with CF who, at the
time of diagnosis or pregnancy, attended the Toronto Cystic Fibrosis
Clinics between 1961 and 1998. RESULTS: From 1963 to 1998, there
were 92 pregnancies in 54 women. There were 1 1 miscarriages and 7
therapeutic abortions. Forty-nine women gave birth to 74 children. The
mean follow-up time was 1 1 ± 8 years. One patient was lost to follow-up
shortly after delivery, and one was lost after 12 years. The overall mor-
tality rate was 19% (9 of 48 patients). Absence of Burkholderia cepacia
(p < 0.00 1 ), pancreatic sufficiency (p = 0.0 1 ), and prepregnancy FEV , >

1306

Respiratory Care • November 2000 Vol 45 No 11

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SPECIAL ISSUES
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Tracheal Gas Insufflation:

Current Status

and Future Prospects

Proceedings from the conference held

August 19, 2000

guest editors: Dean R Hess PhD RRT FAARC

& Neil R Maclntyre MD FAARC

Acid-Base Physiology
and Disorder

guest editors: Catherine SH Sassoon MD
& Jose A L Arruda MD

Evidence-Based Medicine in
Respiratory Care (in 2 parts)

Proceedings from the conference to be

held April 20-22, 2001

guest editors: Dean R Hess PhD RRT FAARC

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Abstracts

50% predicted (p = 0.03) were associated with better survival rates.
When adjusted for the same parameters, pregnancy did not affect survival
compared to the entire adult female CF population. The decline in FEV,
was comparable to that in the total CF population. Three women had
diabetes mellitus, and seven developed gestational diabetes. There were
six preterm infants and one neonatal death. CF was diagnosed in two
children. CONCLUSIONS: The maternal and fetal outcome is good for
most women with CF. Risk factors for mortality are similar to those for
the nonpregnant CF population. Pregnancies should be planned so that
there is opportunity for counseling and optimization of the medical con-
dition. Good communication between the CF team and the obstetrician is
important.

Cystic Fibrosis: End-Stage Care in Canada — Mitchell I, Nakielna E,
Tullis E, Adair C. Chest 2000; 1 18:80-84.

OBJECTIVES; To determine the circumstances in which individuals
with cystic fibrosis (CF) die. the role of different caregivers, and the
extent of palliative care for CF patients. DESIGN; Mailed survey of CF
physicians. SETTING: CF centers in Canada. PATIENTS: All CF deaths
in 1996 known to centers in Canada. RESULTS; The mean age (± SD)
at death of the 45 individuals included in the study was 25.8 ± 13.5
years. The major cause of death was respiratory (34 patients; 75.5%).
Nutritional concerns were common. Lung transplantation was considered
in 42 patients (93.2%), with 7 patients (17.1%) being entered on a list, but
it was carried out in only 2 patients (4.4%). Autopsies were performed on
only 10 patients (22.2%). Most patients died in hospital (37 patients;
82.2%), and 7 patients (15.6%) died in ICUs while receiving intermittent
positive-pressure ventilation. Palliative care was never discussed in 10
patients (25%). In a further 16 patients (40%), it was not discussed until
the last month before death. CONCLUSIONS; Respiratory disease re-
mains the most common cause of death in CF patients. Lung transplan-
tation is frequently considered, but most patients die without having had
a transplant. Discussions on end-of-life care could be considered sooner.

Negative Pressure Ventilation vs External High-Frequency Oscilla-
tion During Rigid Bronchoscopy: A Controlled Randomized Trial —

Natalini G, Cavaliere S, Seramondi V, Foccoli P, Vitacca M, Ambrosino
N, Candiani A. Chest 2000; 1 18:18-23.

Study objectives; To compare the effectiveness of two modalities of
external ventilation during rigid bronchoscopy; intermittent negative pres-
sure ventilation (INPV) and external high-frequency oscillation (EHFO).
DESIGN: Prospective, controlled, randomized, nonblinded study. SET-
TING: University-affiliated hospital. PATIENTS; Seventy patients un-
dergoing interventional rigid bronchoscopy for tracheobronchial lesions
were enrolled into the study. INTERVENTIONS; Mechanical ventilation
was performed by INPV or EHFO. When pulse oximetry was < 90%,
manually assisted ventilation was delivered. Measurements and results:
Arterial blood gases were sampled preoperatively and intraoperatively.
Most patients in both groups had normal intraoperative P.coj (mean, 43.
6 ± 1 1.8 mm Hg under EHFO and 37.4 ± 8.2 mm Hg under INPV; p =
0. 012), and acidemia occurred in 9 of 35 patients of EHFO group and in
2 of 35 patients of INPV group (p = 0.049). Hypercapnia (P.coj > 50
mm Hg) was observed in 10 patients under EHFO and in 2 with INPV
(p = 0.026). Intraoperative mean P„oj was similar (101.4 ± 52.9 mm Hg
with EHFO and 124.2 ± 50.3 mm Hg with INPV; p = 0.07), but Oj
supply was different (3.5 ± 2.3 L/min during INPV and 8.5 ± 6.2 L/min
during EHFO; p < 0.001). Intraoperative hypoxemia (P^o, < 60 mm Hg)
occurred in five patients with EHFO and two with INPV (p = 0.426).
Three EHFO patients required manually assisted ventilation (mean, 0.2 ±
0.9), but no INPV patient did (p = 0.142). CONCLUSIONS: External
negative pressure ventilation appears to be a suitable choice during rigid
bronchoscopy: both EHFO and INPV ensure effective ventilation and
comfortable operating conditions in the majority of patients. Some pa-

tients may receive inadequate ventilation with EHFO, developing respi-
ratory acidosis and requiring manually assisted ventilation. In compari-
son with INPV, EHFO requires a higher fraction of inspired oxygen.

Variability in Performance of Timed Walk Tests in Pulmonary Re-
habilitation Programs — Elpern EH, Stevens D. Kesten S. Chest 2000;
118:98-105.

Study objective; To describe variability in the conduct of walk tests in
pulmonary rehabilitation programs. DESIGN; Analysis of information
obtained by means of a structured written questionnaire. SETTING; Out-
patient pulmonary rehabilitation programs in the United States and Can-
ada. PARTICIPANTS: Clinical coordinators of 75 pulmonary rehabili-
tation programs. INTERVENTIONS: None. RESULTS: Timed walk tests
were obtained in 71 of 99 programs surveyed. Considerable variability in
all aspects of testing practices was evident. Fifty-seven respondents (80%)
based results on a single walk. Walk tests were completed in a hallway
(73%), on a walking track (9%), and on a treadmill (7%). In 29 programs
(44%), a walk supervisor carried or pulled the oxygen source, while in 25
programs (38%), the oxygen was carried or pulled by the patient. Infor-
mal nonstandardized instructions were provided to patients prior to walk-
ing in 41 programs (58%). In 53 programs (76%), the walk supervisor
could direct a patient to speed up, to slow down, or to rest. Evaluations
of breathlessness and perceived exertion were measured during the walk
by 73% and 16% of programs, respectively. CONCLUSIONS: Practices
regarding performance of timed walk tests are poorly standardized among
pulmonary rehabilitation programs. Further research is needed to evalu-
ate the impact of certain variations in testing practices on test results.

Results of a Home-Based Training Program for Patients with COPD —

Hernandez MT, Rubio TM, Ruiz FO, Riera HS, Gil RS, Gomez JC. Chest

2000;118:106-114.

OBJECTIVES: To have a group of COPD patients undergo a simple
program of home-based exercise training, using the shuttle walking test
(SWT) to standardize the intensity of training. METHODS; Sixty pa-
tients participated, randomly distributed into two groups (rehabilitation
and control) of 30 patients each. The following evaluations were carried
out at baseline and at 12 weeks; (1) pulmonary function studies; (2)
SWT; (3) submaximal intensity resistance test; (4) cycle ergometer test;
(5) quality of life; and (6) dyspnea. The rehabilitation group underwent
a lower-extremity training program. Walking was selected as the type of
exercise. The intensity of training was set at 70% of the maximum speed
attained on the SWT. Divided sessions were held, lasting 1 h, 6 days/wk,
at home, with a checkup every 2 weeks. The duration of the program was
12 weeks. RESULTS: The following patients completed the study; 20
patients (66.6%) from the rehabilitation group (mean [± SD]) age, 64.3 ±
8.3 years; mean FEV,, 41.7 ± 15.6% of predicted); and 17 patients
(56.6%) from the control group (mean age, 63.1 ± 6.9 years; mean FEV,,
40 ± 16.4% of predicted). We found no changes in pulmonary function
or effort parameters (SWT or cycle ergometer) in the rehabilitation group
at 12 weeks. A twofold increase (1,274 ± 980 to 2,651 ± 2,056 m; p <
0.001 ) was achieved in the submaximal intensity resistance test, with less
dyspnea at the conclusion of the test (p = 0.05). Significant improvement
also was achieved in basal dyspnea and, both statistically and clinically,
in the quality of life. Significant changes were not achieved in the connx>l
group patients. CONCLUSIONS: A simple home-based program of ex-
ercise training achieved improvement in exercise tolerance, posteffort
dyspnea, basal dyspnea, and quality of life in COPD patients.

Prospective Study of Functional Status and Quality of Life Before
and After Lung Transplantation— Lanuza DM, Lefaiver C, Mc Cabe
M, Farcas GA, Garrity E Jr. Che.st 2000; 1 18:1 15-122.

1308

Respiratory Care • November 2000 Vol 45 No 1 1

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Abstracts

Study objectives: To determine the impact of lung transplantation on
patients' function and quality of life (QOL), 10 lung transplant patients
were followed from before transplantation to 3 months after transplan-
tation. The following variables were examined: (1) perceived functional
status; (2) respiratory function; (3) moods; (4) satisfaction with overall
QOL and health; and (5) thoughts about the decision to undergo lung
transplantation. DESIGN: A longitudinal, small-group, repeated-measures
design. SETTING: A large Midwest university medical center. Measure-
ments and results: Several instruments were used to measure perceived
health, QOL, functional status, and respiratory function. The perceived
improvement in physical function after transplantation was accompanied
by increased satisfaction with physical strength, current health, and QOL.
In addition, dramatic improvements in pulmonary function were seen
after transplantation (FVC, FEV,, and forced expiratory flow at 25 to
75% of FVC); however, only the FEV, values significantly improved
between 1 and 3 months after transplantation. For example, the FEV,
(mean ± SD) increased from 22 ± 1 1 % of predicted before transplan-
tation to 46 ± 1 2% and 55 ± 14% of predicted at 1 month and 3 months
after transplantation, respectively. Although the total number of psycho-
logical symptoms did not decrease significantly over time, the intensity
and distress associated with the symptoms did. Psychological function
scores did not change significantly. Ninety percent of the subjects re-
ported being very satisfied with their transplant decision. CONCLU-
SIONS: Lung transplantation significantly improved the subjects' overall
function and their satisfaction with their QOL and health status. How-
ever, since this report only addressed data for the first 3 months after
transplantation, additional longitudinal research is needed to further elu-
cidate the experiences and outcomes associated with lung transplantation.

The Effects of Early and Repeated Prone Positioning in Pediatric
Patients with Acute Lung Injury — Curley MA, Thompson JE, Arnold
JH. Chest 2000:1 18:156-163.

Study objective: To describe the physiologic changes and to evaluate the
safety of placing pediatric patients with acute lung injury (ALI) prone for
20 h/d during the acute phase of their illness. DESIGN: Single-center
prospective case series. SETTING: Tertiary-level pediatric ICU. PA-
TIENTS: Consecutive patients with bilateral pulmonary parenchymal
disease requiring intubation and mechanical ventilation with a P302'f''^'^"
tion of inspired oxygen (F,oP ratio < 300 mm Hg. INTERVENTIONS:
Patients were enrolled as soon as possible after meeting criteria and were
placed in a prone position for 20 h/d daily until clinical improvement or
death occurred. Measurements and results: Twenty-five pediatric patients
who had ALI/ARDS, ranging in age from 2 months to 17 years, were
placed in a prone position within 19 h of meeting the study criteria for a
median time of 4 days, which accounted for 47% of their time receiving
mechanical ventilation. Eighty-four percent of patients (n = 21) were
categorized as overall responders to prone positioning because they ex-
perienced more days of increases of a 20 mm Hg in V^^j F,qj ratio or
a decrease of a 1 0% in oxygenation index when shifted from a supine to
a prone position during the study period. During the 107 patient-days and
214 positioning cycles, no critical incidents occurred. Furthermore, no
patient experienced a persistent decrease in oxygen saturation as mea-
sured by pulse oximetry (Spo^) of > 10% from values obtained when in
the supine position, failed to keep their Spo^ at > 85%, or experienced an
increased respiratory rate of > 40 breaths/min when prone. Using the
COMFORT score, patients were objectively rated to be equally comfort-
able in both the supine and prone positions. Patients also were able to
resume spontaneous ventilation and to progress toward endotracheal ex-
tubation while in the prone position. Iatrogenic injury associated with
prolonged prone positioning included stage II pressure ulcers in six pa-
tients (24%). CONCLUSIONS: The pediatric patients in this series dem-
onstrated improvements in oxygenation without serious iatrogenic injury
after prone positioning. This study provides a foundation for a prospec-

tive randomized study investigating the effect of early and repeated prone
positioning on clinical outcomes in pediatric patients with ALI.

The Role of Anticholinergics in Bronchoscopy: A Randomized Clinical
Trial— Cowl CT, Praka.sh UB, Kruger BR. Chest 2000;118:188-192.

BACKGROUND: Anticholinergic medications have been utilized fre-
quently prior to bronchoscopy and are thought to facilitate the drying of
secretions to limit the amount of required topical anesthetic on the airway
mucosa, prevent cardiac arrhythmias during the procedure, and increase
patient comfort. OBJECTIVE: To determine if atropine or glycopyrro-
late, two anticholinergic agents utilized most frequently in this setting,
have any significant role for this purpose. DESIGN: Double-blind, pla-
cebo-controlled study, in which patients were randomly selected to re-
ceive atropine (0.01 mg/kg body weight, IM injection), glycopyrrolate
(0.005 mg/kg, IM injection), or saline solution placebo (approximately 2
mL, IM injection) 15 to 45 min prior to being sedated with midazolam
until judged to be lightly sedated. SETTING: A large academic teaching
hospital in the midwestem United States. PARTICIPANTS: Two hun-
dred seventeen outpatients referred for bronchoscopy who satisfied in-
clusion and exclusion criteria. Measurements and results: Using a mod-
ified visual analog scale (0 to 100 mm), the bronchoscopist and the nurse
anesthetist estimated the antisialagogic effect, effectiveness in cough
suppression, and overall patient comfort during the procedure. The pa-
tients completed a similar questionnaire after recovering from the pro-
cedure. Patients were also monitored for complications (cardiac arrhyth-
mias, oxygen desaturation, hypertension, wheezing, or coughing severe
enough to curtail the procedure). There was no significant difference
found among atropine, glycopyrrolate, and placebo for the primary end
point of secretion control. In addition, there was no difference found
between either medication and placebo for effectiveness of cough sup-
pression, amount of topical anesthetic used, complication rates, or overall
patient comfort. CONCLUSION: The use of anticholinergic agents prior
to bronchoscopy did not affect performance of bronchoscopy or compli-
cation rates, and there was no appreciable benefit from the resultant
reduction in airway secretions in a population of patients receiving con-
current sedation with benzodiazepines.

Do Bacteria Cause Exacerbations of COPD? — Hirschmann JV. Chest

2000;118:193-203.

Exacerbations of COPD, which include combinations of dyspnea, cough,
wheezing, increased sputum production (and a change in its color to
green or yellow), are common. The role of bacterial infection in causing
these episodes and the value of antibiotic therapy for them are debated.
An assessment of the microbiological studies indicates that conventional
bacterial respiratory pathogens, such as Streptococcus pneumoniae and
Haemophilus influenzae, are absent in about 50% of attacks. The fre-
quency of isolating these organisms, which often colonize the bronchi of
patients in stable condition, does not seem to increase during exacerba-
tions, and their density typically remains unchanged. Serologic studies
generally fail to show rises in antibody titers to H influenzae; the only
report available demonstrates none to Haemophilus parainfluenzae; and
the sole investigation of S pneumoniae is inconclusive. Trials with vac-
cines against S pneumoniae and H influenzae show no clear benefit in
reducing exacerbations. The histologic findings of bronchial biopsies and
cytologic studies of sputum show predominantly increased eosinophils,
rather than neutrophils, contrary to what is expected with bacterial in-
fections. The randomized, placebo-controlled trials generally show no
benefit for antibiotics, but most have studied few patients. A meta-anal-
ysis of these demonstrated no clinically significant advantage to antimi-
crobial therapy. The largest trials suggest that antibiotics confer no ad-
vantage for mild episodes; with more severe attacks, in which patients
should receive systemic corticosteroids, the addition of antimicrobial
therapy is probably not helpful.

1310

Respiratory Care • November 2000 Vol 45 No U

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Abstracts

The Role of Bacteria in Exacerbations of COPD: A Constructive

View— Murphy TF, Sethi S, Niederman MS. Chest 2000;! 18:204-209.

The role of infection in exacerbations of COPD remains controversial
and incompletely understood. Although some investigators believe that
bacteria are not important for patients with exacerbation, we disagree and
believe that patients with at least two of the three cardinal symptoms of
exacerbation should receive antibiotic therapy. With an open-minded
view of the area, we review the data, showing that bacteriologic studies,
pathologic investigations, and clinical trials all support roles for bacteria
and antibiotic therapy in this disea.se. Still, many questions remain, and
future studies will be needed to better define the mechanisms of bacterial
invasion in the bronchitic patient and to develop effective vaccines to
prevent exacerbations. In the meantime, we must rely on antibiotic ther-
apy, and we will need prospective studies to corroborate preliminary
findings showing that different patients may require different therapies;
thus, patient subsetting may be vital in the selection of antibiotic therapy
for exacerbations of COPD.

Effects of Two Types of Training on Pulmonary and Cardiac Re-
sponses to Moderate Exercise in Patients with COPD — Puente-Mae-
stu L, Sanz ML, Sanz P, Ruiz de Ona JM, Rodriguez-Hermosa JL, Whipp
BJ. Eur Respir J 2000;15:1026-1032.

The effects of two 8-week programmes of exercise reconditioning on the
time constants (tau) of the pulmonary gas exchange, ventilatory and heart
rate responses to moderate intensity exercise in patients with chronic
obstructive pulmonary disease (COPD) were studied. Thirty-five subjects
(mean±SD 64±5 yrs; forced expiratory volume in one second (FEV,)
1.09±0.17 L; 41 ±6.2% predicted) were randomly assigned either to
supervised (s) training on a treadmill, 4 days X week"' (group S; n=21)
or self-monitored (SM) walking 3 or 4 km in 1 h 4 days X week"' (group
SM; n=20). The different levels of supervision resulted in a different
estimated intensity of training (35 ±10 W in the SM group and 70±22 W
in the S group). The kinetics were evaluated with a constant-load exercise
test on a cycle-ergometer at a work rate corresponding to 80% the highest
oxygen consumption (Vq,) that can be achieved without blood lactic
acidosis (Vo„LAT) or 50% of Vo,,max, if maximum oxygen consump-
tion Vqj.LAT was not found. Mean endurance time at a work rate equiv-
alent to 70% of the pretraining Voj.max increased by 493±281 s in the
S group and 254±283 s in the SM group (p<0.001). Mean tau V„^
decreased from 83± 17 s to 67± 1 1 s (p<0.(X)01) in the S group and from
84± 12 to 79± 16 (p=0.04) in the SM group. Mean tau for carbon dioxide
output minute ventilation and heart rate were also speeded after training,
again more markedly in the S group. In the S group there was a signif-
icant correlation between the decrease in tau Vq, and the increase in
endurance time (r=-0.56, SEM=0.2I ). It is concluded that training speeds
the kinetic response of oxygen consumption, carbon dioxide production,
minute ventilation and heart rate to moderate exercise and that the effect
is greater after supervised, more intense training.

External Nasal Dilation Reduces Snoring in Chronic Rhinitis Pa-
tients: A Randomized Controlled Trial — Pevemagie D, Hamans E,
Van Cauwenberge P, Pauwels R. Eur Respir J 2000;15:996-1000.

Chronic rhinitis patients often suffer from unrefreshing sleep and snor-
ing, related to increa.sed nasal resistance to airflow. Previous trials based
on subjective assessment of snoring have demonstrated beneficial effects
of Breathe Right (BR), a noninvasive external nasal dilator. Polysom-
nography (PSG) was applied to objectively assess the effects of BR on
snoring. Twelve nonobese chronic rhinitis patients participated in the
present study, which had a randomized, placebo-controlled design. The
presence of snoring and the absence of sleep apnoea was demonstrated
during a ba.seline overnight sleep study. Patients were then randomized
for placebo or true nasal dilator treatment, which was also assessed by

overnight PSG. The use of BR had no effect on sleep quality, arousal-
index apnoea-hypopnoea-index or snoring loudness. Snoring frequency
was significantly lowered by BR (173 ±29 snores X h '), compared with
placebo (258±34 snores x h"'; p=0.016). The results support the hy-
pothesis that Breathe Right is effective in reducing the amount of snoring
in patients with chronic rhinitis. This objective finding is in line with
some other reports on subjective improvement of snoring, based upon the
judgement of bedpartners.

Two Months Auto-Adjusting Versus Conventional NCPAP for Ob-
structive Sleep Apnoea Syndrome — Teschler H, Wessendorf TE, Far-
hat AA, Konietzko N, Berthon-Jones M. Eur Re.spir J 2000;15:990-995.

Autoadjusting nasal continuous positive airway pressure (CPAP) greatly
reduces the apnoea/hypopnoea index (AHI), and affords a significant
reduction in median pressure (P50) compared-with manually titrated con-
ventional nasal CPAP. The aim of the present study was to test whether
these benefits were maintained in the medium term at home, in a double-
blind crossover study. Ten sequential subjects (mean AHI 52.9 x h ')
were enrolled. After a manual titration, subjects were randomly allocated
to 2 months autoadjusting nasal CPAP (AutoSet), followed by 2 months
with the AutoSet device in fixed pressure mode at the manually titrated
pressure, or vice versa. The machine-scored AHI, P50, and median leak
were recorded on 12 nights in each arm, and averaged. Mean±SEM AHI
was 4.0±0.3 X h"' in auto mode, and 3.7±0.3 X h"' in manual mode
(NS). Mean±SEM P50 was 7.2±0.4 cm H.O auto, 9.4±0.6 cm HjO
manual, average reduction 23 ±4% (p<0.(X)OI). Auto "recommended"
pressure was (mean±SEM) 10.1±0.5 cm H^O (p=0.04 with respect to
manual) and peak pressure typically 1 cm HjO higher. Median (±SEM)
leak was 0.181 ±0.006 L X s"' auto (and uncorrelated with AHI or
pressure), 0.20±0.006 L X s"' manual (p=0.003). Compliance was
6.3±0.4 h in auto mode and 6.1 ±0.5 h in fixed mode (NS). Apnoea/
hypopnoea index during 2 months of home autoadjusting nasal contin-
uous positive airway pressure is comparable to that during conventionally
titrated fixed pressure continuous positive airway pressure, while afford-
ing a 23% reduction in median pressure but no increase in compliance.
Leak did not importantly affect autoadjustment.

Simple Method for Alpha, -Antitrypsin Deficiency Screening by Use
of Dried Blood Spot Specimens — Costa X, Jardi R, Rodriguez F, Mirav-
itlles M, Cotrina M, Gonzalez C, et al. Eur Respir J 2000;15:l 1 1 l-l 1 15.

The use of dried blood spot (DBS) specimens in quantitative alpha 1-
antitrypsin (alpha, -AT) detection or genetic analysis is limited because
protein levels in the samples are low and they contain components that
can interfere with polymerase chain reaction amplification. A method-
ological adaptation was developed to overcome these drawbacks which is
discussed here. The study population consisted of 200 healthy volunteers
and 300 patients with chronic obstructive pulmonary disease (COPD).
DBS specimens were tested for alpha, -AT concentration using a modi-
fied nephelometric assay and phenotyped with an isoelectric focusing
method. Genetic diagnosis was established by deoxyribonucleic acid se-
quencing using a simple purification procedure to remove contaminants.
The nephelometric method showed a detection limit of 0.284 mg X dL ',
corresponding to a serum concentration of 1 3 mg X dL ' . The correlation
coefficient between alpha, -AT concentrations in DBS versus seruin sam-
ples was R^=0.8674 (p<0.0001). All 200 healthy individuals had DBS
alpha, -AT concentrations >1.9 mg X dL ', corresponding to 1 14 mg X
dL' in serum samples. One hundred and twenty-five COPD patients
(42%) showed alpha, -AT values <1.8 mg X dL"'. Twenty patients with
the PIZ phenotype had alpha, -AT values lower than 0.64 mg X dL"'. On
the basis of genotyping, one COPD patient was classified as heterozy-
gous (PIMM(heerlen)). Selective elution of contaminants resulted In op-
timal alpha, -antitrypsin genotyping. Because of its sensitivity and excel-
lent correlation with the standard inethixi, the dried bUxxl spot quantitative
assay is a reliable tool for routine measurement of alpha, -antitrypsin.

1312

Respiratory Care • November 2000 Vol 45 No 11

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Abstracts

Safety of Sputum Induction in Chronic Obstructive Pulmonary Dis-
ease — Rytila PH, Lindqvist AE, Laitinen LA. Eur Respir J 2000;I5:
1116-1119.

The aim of the present study was to evaluate the safety of sputum in-
duction in patients with varying severity of chronic obstructive pulmo-
nary disease. The subjects were 28 smokers with baseline forced expir-
atory volume in one second (FEV,) of (mean and range) 1.8 (0.8-2.9) L
that is 53 (28-69)% of the predicted and reversibility of 2.5 (-7.4-9.9)%.
Sputum was induced after premedication with 200 microg salbutamol at
increasing concentrations (0.9, 3, 4, and 5%) of hypertonic saline nebu-
Uzed by an ultrasonic nebulizer. The procedure was well tolerated, and
none of the patients reported major side-effects. However, the mean
change from prebronchodilator FEV, during induction was -8.5 (-23-
11)%, p=0.001, and from postbronchodilator FEV, -10.7 (-25-5)%,
p<0.0001. Three (11%) of the patients had a fall in FEV, from the
prebronchodilator baseline of > 20%, and a further 10 (36%) had a fall
of 1 0-20%. Patients with greater reversibility in airway obstruction seemed
to get the best benefit from the bronchodilator pretreatment, since there
was an inverse relationship between reversibility in FEV, and fall in
rev, during induction (r=-0.4, p=0.03). It is concluded that sputum
induction by hypertonic saline inhalation can cause meaningful broncho-
constriction in patients with chronic obstructive pulmonary disease, de-
spite pretreatment with an inhaled betaj-agonist. The results highlight the
importance of monitoring spirometry during sputum induction to detect
bronchoconstriction.

Management of Acute Childhood Asthma: A Prospective Multicen-
tre Study— Hilliard TN, Witten H, Male lA, Hewer SL, Seddon PC. Eur
Respir J 2000;15:1102-1105.

Children with acute asthma account for a significant proportion of pae-
diatric hospital admissions, and clear guidelines exist for their care. The
aim of this study was to determine their management in the UK. Over 1
year (February 1995 to January 1996), children aged 1-14 yrs admitted
with acute asthma were studied in both teaching and district general
hospitals. An admission pro forma was used to collect data prospectively,
with a computer-based information management system for the input of
admissions in each centre. Ten centres collected data prospectively, with
1,578 admissions involving 1,352 children (median age 3.6 yrs). Sixty
two per cent of children were < 5 yrs of age. Sixty three per cent of
admissions had initial arterial oxygen saturation (S^qj) recorded, and, in
those older than 5 yrs, 36% had their initial peak expiratory flow rate
recorded. Systemic steroids were given to 78%. An initial S^q^ of < 92%
was associated with a longer stay in hospital, and also with intravenous
treatment. Preventative treatment increased from 42% on admission to
53% on discharge. The rates of documented education were low. This is
the largest UK study following publication of national guidelines and
shows that there is still room for improvement in the management of
children admitted with acute asthma.

Moment Ratio Analysis of Multiple Breath Nitrogen Washout in
Infants with Lung Disease — Schibler A, Schneider M, Frey U, Kraemer
R. Eur Respir J 2000;15:1094-1101.

Measurement of lung volumes at end expiratory level and assessment of
ventilation inhomogeneity is important for respiratory management in
infants with lung disease. This study of multiple breath nitrogen washout
was compared with body plethysmography to measure functional resid-
ual capacity in infants and assessed ventilation inhomogeneity using
mean dilution numbers and alveolar based gas dilution numbers. Mea-
surements were performed in 23 infants with lung disorders, eleven had
wheezing bronchitis, four bronchopulmonary disease, and eight cystic
fibrosis. Mean age was 1 1 .2±5.8 months. Functional residual capacity of

nitrogen washout (29.8±11.4 mL X kg"') was significantly (p<0.05)
lower than the plethysmographically measured functional residual capac-
ity (40.3±11.4 mL x kg"'). Tidal volumes before nitrogen washout
(90.4±35.1 mL) were significantly larger than at the end of the washout
(72.2 ±26.9 mL). Alveolar based gas dilution numbers (6.7 ±2.3) were
significantly lower (p<0.001) than mean dilution numbers (10±5.7).
Functional residual capacity determination by nitrogen washout and pleth-
ysmography in infants with lung disease showed evidence of air trapping
and ventilation inhomogeneity. Ventilation inhomogeneities are best de-
scribed by alveolar based dilution numbers, since rebreathing of 100%
oxygen changes ventilation pattern.

Airway Inflammation Following Exposure to Diesel Exhaust: A Study
of Time Kinetics Using Induced Sputum — Nordenhall C, Pourazar J,
Blomberg A, Levin JO, Sandstrom T, Adelroth E. Eur Respir J 2000; 15:
1046-1051.

The adverse health effects of particulate matter pollution are of increas-
ing concern. In a recent bronchoscopic study in healthy volunteers, pro-
nounced airway inflammation was detected following exposure to diesel
exhaust (DE). The present study was conducted in order to evaluate the
time kinetics of the inflammatory response following exposure to DE
using induced sputum from healthy volunteers. Fifteen healthy nonsmok-
ing volunteers were exposed to DE particles with a 50% cut-off aerody-
namic diameter of 10 microm 3(X) microg X m""^ and air for 1 h on two
separate occasions. Sputum induction with hypertonic saline was per-
formed 6 and 24 h after each exposure. Analyses of sputum differential
cell counts and soluble protein concentrations were performed. Six hours
after exposure to DE, a significant increase was found in the percentage
of sputum neutrophils (37.7 versus 26.2% p=0.002) together with in-
creases in the concentrations of interleukin-6 (12.0 versus 6.3 pg X mL"',
p=0.006) and methylhistamine (0. 1 1 versus 0. 1 2 microg XL"', p=0.024).
Irrespective of exposure, a significant increase was found in the percent-
age of sputum neutrophils at 24 as compared to 6 h, indicating that the
procedure of sputum induction itself may change the composition of
sputum. This study demonstrates that exposure to diesel exhaust induces
inflammatory response in healthy human airways, represented by an
early increase in interleukin-6 and methylhistamine concentration and the
percentage of neutrophils. Induced sputum provides a safe tool for the
investigation of the inflammatory effects of diesel exhaust, but care must
be taken when interpreting results from repeated sputum inductions.

Half-life of Blood Carboxyhemoglobin After Short-Term and Long-
Term Exposure to Carbon Monoxide — Shimazu T, Ikeuchi H, Sugi-
moto H, Goodwin CW, Mason AD Jr, Pruitt BA Jr. J Trauma 2000;49:
126-131.

BACKGROUND: In models of smoke inhalation injury and carbon mon-
oxide poisoning blood carboxy-hemoglobin (COHb) levels decrease faster
than predicted by the generally recognized half-life of COHb. We studied
the effects of duration of exposure to carbon monoxide (CO) on the
subsequent CO elimination. METHODS: Each of four sheep were insuf-
flated with CO gas mixtures either for a few minutes (short-term expo-
sure) or for several hours (long-term exposure), then ventilated with air
for 3 hours. Serial COHb concentrations were analyzed by using a two-
compartment, single central outlet mathematical model. RESULTS: Short-
term exposures exhibited biphasic decreases of COHb concentration com-
patible with a two-compartment model; an initial rapid decrease (half-life
5.7 ± 1.4 minutes) was followed by a slower phase (103 ± 20.5 min-
utes). Long-term exposures exhibited almost monophasic decreases, which
were nevertheless compatible with the model (half-life, 21.5 ± 2.1 and
1 18 ± 1 1.2 minutes). CONCLUSION: This study demonstrated different
patterns of CO elimination curve, which suggests distribution of CO to
two compartments having different rates of equilibration.

1314

Respiratory Care • November 2000 Vol 45 No 11

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Conference faculty members — front row, from left: Gerard A Silvestri MD MS, Joshua O Benditt MD,
Gordon D Rubenfeld MD MSc, Mitchell M Levy MD, J Randall Curtis MD MPH, Louisa Viles MSW.
Back row. from left: John H Hansen-Flaschen MD, Harold L Manning MD, Melaine (Tudy) H Giordano
MS RN CPFT, Helen M Sorenson RRT, John E Heffner MD, Robert A Burt JD, Joseph J Fins MD.
Not pictured: Barbara J Daly PhD RN (did not attend)

CO-CHAIRS

Gordon D Rubenfeld MD MSc— Seattle, Washington
J Randall Curtis MD MPH— Seattle, Washington

FACULTY

Joshua O Benditt MD

Seattle, Washington
Robert A Burt JD

New Haven, Connecticut
J Randall Curtis MD MPHs

Seattle, Washington
Barbara J Daly PhD RN

Cleveland, Ohio
Joseph J Fins MD

New York, New York
Melaine (Tudy) H Giordano MS RN CPFT

Carrollton, Texas
John H Hansen-Flaschen MD
. Philadelphia, Pennsylvania

John E Heffner MD

Charleston, South Carolina
Mitchell M Levy MD

Providence, Rhode Island
Harold L Manning MD

Lebanon, New Hampshire
Gordon D Rubenfeld MD MSc

Seattle, Washington
Gerard A Silvestri MD MS

Charleston, South Carolina
Helen M Sorenson RRT

Omaha, Nebraska
Louisa Viles MSW

Seattle, Washington

Foreword

Palliative Respiratory Care

Steve was a 29-year-old man with metastatic bone can-
cer who was admitted to the intensive care unit (ICU) with
sepsis and neutropenia after chemotherapy. His ICU course
was compHcated by acute respiratory distress syndrome.
After 3 weeks in the ICU with a slowly improving respi-
ratory status, he developed a recurrent episode of sepsis
complicated by renal failure and cardiac failure requiring
increasing doses of pressors. At this point in his care, his
physicians, nurses, and family met to discuss the prognosis
and the best course of care. The decision was made to
withdraw life-sustaining therapies while continuing com-
fort measures and allowing him to die. After this decision
was made, the family spent an hour with the patient, say-
ing their goodbyes. When they were finished saying good-
bye, the physician wrote an order to discontinue the pres-
sors and antibiotics, to wean the fraction of inspired oxygen
to room air, and to extubate Steve. The nurse called for the
respiratory therapist (RT) to handle the ventilator orders
and extubation. The RT arrived in the ICU unaware of the
reason for the call and without having been involved in
any of the previous discussion about withdrawing life-
sustaining therapy. When she realized what was being
asked of her, she burst into tears and left the ICU.

This and the next issue of Respiratory Care contain the
proceedings of a Journal Conference on palliative respira-
tory care. Why should Respiratory Care be interested
enough in palliative care to devote an entire conference
and two issues of the journal to the topic? What is pallia-
tive respiratory care and why should busy respiratory care
clinicians learn more about this topic?

Palliative care is the art and skill of providing sensitive
and appropriate care to patients with terminal or life-lim-
iting illnesses. While palliative care certainly includes the
provision of medications to relieve pain and dyspnea after
withdrawal of mechanical ventilation in a patient who is
expected to die, it also includes talking with patients in
pulmonary rehabilitation settings about the fact that they
have a progressive and irreversible disease. The fact is,
RTs, whether they know it or not, provide a great deal of
palliative care. Of the 10 leading causes of death, three
(lung cancer, chronic obstructive pulmonary disease, and
pneumonia) are routinely cared for by RTs.' Dyspnea is
one of the most common symptoms experienced by ter-
minally ill patients. Ninety percent of patients dying with
chronic obstructive pulmonary disease and 90% of pa-
tients dying with lung cancer experience dyspnea.^'^ An

aging population will dramatically increase the number of
chronically ill patients with increasing requirements for
palliative care services. "* Finally, RTs devote a substantial
amount of their time to caring for patients in ICUs, which
are common places for patients to make the transition from
curative to palliative care.^

Unfortunately, there is a growing body of literature that
suggests that we in the medical professions are not pro-
viding the best possible palliative care and that we are not
doing an adequate job of training clinicians to provide
palliative care. We know from the Study to Understand
Prognoses and Preferences for Outcomes and Risks of
Treatments (SUPPORT)^ that a 50% of seriously ill, hos-
pitalized patients are in moderate or severe pain during the
last days of life and that pain control was particularly poor
among physicians who often practice in the ICU and among
patients with diseases most commonly cared for in the
ICU.*'' Major medical textbooks and resources contain
little useful information on end-of-life care.*'

Much of the existing literature on palliative respiratory
care explores the use of lasers, bronchoscopy, radiation,
and thoracoscopy to manage endobronchial obstruction,
metastatic pleural effusions, and hemoptysis. These are
extremely important techniques, and substantial advances
have been realized. However, many other clinical chal-
lenges face the RT for which there are fewer resources to
turn to for answers. In the ICU, questions about withdraw-
ing life support and mechanical ventilation are raised along
with the best ways to alleviate dyspnea with appropriate
use of mechanical ventilation or noninvasive ventilatory
support. Assessing and treating dyspnea and managing
respiratory secretions is a familiar role for RTs, and these
may become particularly important goals in caring for the
terminally ill patient. Even after clinicians are armed with
adequate knowledge, the organizational structure and fi-
nancing of the health care delivery system may not support
palliative care activities. Finally, for clinicians familiar
with the curative model of the ICU, emergency depart-
ment, and operating room, some of the most difficult les-
sons are the basic tenets of palliative care, which:

• Affirms life and regards dying as a normal process;

• Neither hastens nor postpones death;

• Provides relief from pain and other distressing symp-
toms;

• Integrates the psychological and spiritual aspects of
patient care;

1318

Respiratory Care • November 2000 Vol 45 No 11

Palliative Respiratory Care

• Offers a support system to help patients live as ac-
tively as possible until death;

• Offers a support system to help the family cope during
the patient's illness and in their own bereavement.'"

Because of their ubiquitous distribution in the health
care system, RTs see patients in the ICU, acute care hos-
pital, nursing home, outpatient clinic, rehabilitation center,
and in the home. With this broad exposure, RTs encounter
patients at every point in their trajectory with a terminal
illness. This affords us a unique opportunity and respon-
sibility to improve the care that patients receive in their
final stage of life. It is our hope that this series of articles
will provide a resource for educational material and stim-
ulate a broader dialog in the field to improve palliative
respiratory care.

Gordon D Rubenfeld MD MSc

Conference Co-Chair

J Randall Curtis MD MPH

Conference Co-Chair

REFERENCES

1. Murphy SL. Deaths: final data for 1998. National Vita! Statistics
Reports. 2000;48; 1-106.

2. Lynn J, Teno JM, Phillips RS, Wu AW, Desbiens N, Harrold J, et al.
Perceptions by family members of the dying experience of older and
seriously ill patients. SUPPORT Investigators. Study to Understand
Prognoses and Preferences for Outcomes and Risks of Treatments.
Ann Intern Med 1997;126:97-106.

3. Dudgeon DJ, Lertzman M. Dyspnea in the advanced cancer patient. J
Pain Symptom Manage 1998;16:212-219.

4. Mechanic D. The changing elderly population and future health care
needs. J Urban Health 1999;76:24-38.

5. Curtis JR, Rubenfeld GD, editors. Managing death in the ICU: the
transition from cure to comfort. New York: Oxford University Press;
2000.

6. A controlled trial to improve care for seriously ill hospitalized pa-
tients. The study to understand prognoses and preferences for out-
comes and risks of treatments (SUPPORT). The SUPPORT Principal
Investigators. JAMA 1995;274:1591-1598.

7. Desbiens NA, Wu AW, Broste SK, Wenger NS, Connors AF Jr, Lynn
J, et al. Pain and satisfaction with pain control in seriously ill hospi-
talized adults: findings from the SUPPORT research investigations.
Study to Understand Prognoses and Preferences for Outcomes and
Risks of Treatments. Crit Care Med 1996;24:1953-1961.

8. Carron AT, Lynn J, Keaney P. End-of-life care in medical textbooks.
Ann Intern Med 1999;130:82-86.

9. Rabow MW, Hardie GE, Fair JM, McPhee SJ. End-of-life care con-
tent in 50 textbooks from multiple specialties. JAMA 2000;283:771-
778.

10. WHO Expert Committee on Cancer Pain Relief and Active Support-
ive Care. Cancer pain relief and palliative care: report of a WHO
Expert Committee. World Health Organization. Technical report se-
ries 804. Geneva: WHO; 1990.

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Conference Proceedings

Principles in Palliative Care: An Overview

Joseph J Fins MD

Introduction

Deflnitional Origins of Palliative Care

The American Context

Political and Clinical Implications

Negative and Positive Rights: Do-Not-Resuscitate Orders
in the Operating Room

Opioids and the Deconstruction of Double Effect

The Extubation Quandary

Futility Disputes: The Antithesis of Palliative Care
Conclusion: Achieving the Goals of Care

[Respir Care 2000;45(1 1):1320-1326] Key words: palliative care, medical
history, advance care planning, death and dying, futility, physician-assisted
suicide, euthanasia.

Introduction

When asked to discuss principles in palliative care, sev-
eral questions immediately arise. Are these principles re-
alized in clinical practice? Do the platitudes or precepts
translate into the experience of patients? Although the ar-
ticulation of principles is often a first step in a reformist
movement like palliative care, it is critical to do more than
simply recount philosophical abstractions that have little
chance of effecting change. So, instead, I will explore the
principles that inform palliative care and consider why our
end-of-iife practice is not always as lofty as our principles
might lead us to believe.

To this end, I will review the definitional and historical
origins of the palliative care movement. 1 will consider

Joseph J Fins MD is affiliated with Weill Medical College of Cornell
University and New York Presbyterian Hospital-Cornell Campus, New
York. New York. He is also with The Hastings Center, Garrison, New
York. Dr Fins is a Project on Death in America Faculty Scholar of the
Open Society Institute.

A version of this paper was presented by Dr Fins during the Respiratory
Care Journal Conference, Palliative Respiratory Care, held May 19-21,
2000 in Cancijn, Mexico

Correspondence: Joseph J Fins MD, Weill Medical College of Cornell
University, New York Presbyterian Hospital, 525 East 68th Street, F-173,
New York NY 10021. E-mail; jjfins@mail.med.comell.edu.

how this history informs the continuing difficulty of bring-
ing palliative care into the clinical mainstream. By con-
sidering the use of do-not-resuscitate orders (DNR orders),
opioid practice patterns, decisions to remove life-sustain-
ing therapy, and futility disputes, I will seek to illustrate
how palliative care's unique historical origins continue
to lead to a disconnect between principles and practice.
To address this lingering difficulty I will conclude by em-
phasizing the importance of setting goals of care at the end
of life.

Definitional Origins of Palliative Care

To help bring palliative care principles to the bedside,
we first need to understand the origins of this movement.
Palliative care has its origins in the hospice movement — a
word that derives its meaning from two Latin roots: hos-
pis, which means both host and guest, as well as hospi-
tium, the venue where hospitality was given and received.
Most commentators would assert that the modem iteration
of hospice was started in England by Dame Cicely Saun-
ders, the founder of St Christopher's Hospice outside of
London.'

Palliative care has deep religious roots. Indeed one mod-
em commentator has noted ". . . that, given scientific med-
icine's inability to give any meaning, and maybe any dig-
nity, to dying, the hospice movement has arisen, as an
essentially Christian framework to cope with our going

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Respiratory Care • November 2000 Vol 45 No 11

Principles in Palliative Care: An Overview

out."- Dame Cicely has explicitly acknowledged the theo-
logical foundation of her life's work. Commenting on the
religious affiliations of her colleagues at St Christopher's,
she observed that "We are not all Christians here, by any
means, but our work is done in the obedience to the Chris-
tian imperative. For me personally, it could not be done
otherwise."''

Dame Cicely has traced the hospice movement to Fa-
biola, the 4th century Roman matron and disciple of St
Jerome, who offered food, drink, shelter, clothing, and
lodging to needy strangers. This tradition was continued
within monastic hospices into the middle ages, where pil-
grims and other travelers found assistance and care. The
special link between hospice work and the care of the
dying dates to the 19th century. In 1842, Mme Jeanne
Gamier opened a hospice for dying cancer patients in Lyons,
France. In 1 879, Our Lady's Hospice in Dublin was opened
by the Irish Sisters of Charity, whose primary focus was
on the care of the dying."* It has been reported that the
Sisters said, "It is not a hospital, for no one comes here
expecting to be cured. Nor is it a home for incurables, as
the patients do not look forward to spending years in the
place. It is simply a 'hospice' where those who are re-
ceived have very soon to die, and who know not where to
lay their weary heads."^

Commentators have asserted that it is the devoted work
of the Irish Sisters of Charity that has linked the word
hospice to end-of-Iife care. Their founder, Mother Mary
Aikenhead, brought her order to England in 1 905 to found
St Joseph's Hospice. Around the same time, a physician,
Dr Howard Barrett, founded St Luke's Home for the Dy-
ing Poor in 1 893. This institution pioneered the regular use
of morphine around the clock so as to minimize patient
distress.

Cicely Saunders arrived at St Luke's in 1948 as a 29-
year-old social worker with a nursing degree. Her experi-
ence there was formative in the development of pain man-
agement techniques and led to her pioneering work in
opioid clinical pharmacology. When she arrived at St Jo-
seph's in 1958, after going to medical school in her late
thirties, she developed an even greater emphasis on pain
management and the psychosocial dimensions of death,
dying, and bereavement. St Christopher's was opened in
1967. Since then Dame Cicely's charismatic leadership
has inspired many followers and founded a movement
with disciples throughout the world. "*

In the wake of those efforts, in 1990 the World Health
Organization (WHO) convened an expert committee to
disseminate the message of pain control and palliative care
to an international audience. This group defined palliative
care as ". . . the active total care of patients whose disease
is not responsive to curative treatment. Control of pain, of
other symptoms, and of psychological, social, and spiritual
support is paramount. The goal of palliative care is the

achievement of the best quality of life for patients and
their families."''

It is interesting to note that this definition highlights
symptom management over cure. It asserts a mandate for
comprehensive care and not merely the absence of certain
curative interventions. Instead, it is an approach that stresses
the practitioner's affirmative obligations to the dying. ^■'* It
instructs palliative care practitioners to address the psy-
chosocial and spiritual needs of patients and views the
entire family unit as the object of care.

The American Context

It is notable as we recount this history to observe that,
thus far, we have spoken of international developments in
palliative care and not work done in the United States. The
palliative care movement was slow to develop in America.
The first hospice was founded in Connecticut in 1974
under the leadership of Joseph Califano, then secretary of
the U.S. Department of Health, Education, and Welfare,
and Ella Grasso, then governor of the state.'' (Claudia Cali-
fano, personal communication). And even though that was
over a quarter century ago, progress has been slow in
coming.

This difference can be explained in part by the princi-
ples that motivated American medical ethics during this
time. In contrast to the British experience, American med-
icine was informed by a medical ethic that stressed the
promotion of patient autonomy and asserted the negative
right to be alone. Our focus, epitomized by the President's
Commission report on decisions to forego life-sustaining
therapies, has been on the promulgation of legalistic de-
vices that would allow care to be withheld or withdrawn.'
The motivation was not religious but highly secular and
informed by the growing bioethics movement and devel-
opments in the law. The goal was the promotion of patient
self-determination, not the communitarian ethic that in-
formed palliative care in Britain. Instead, the bioethics
movement focused on the rights of patients to resist the
seductive technologic imperative that marks American
medicine. '°

While hospice and palliative care thrived in Great Brit-
ain and became integrated into the continuum of care, the
palliative care movement remained marginalized in Amer-
ica. The WHO plea for "the active total care of patients
whose disease is not responsive to curative treatment" was
discordant in an era obsessed by either the promise or the
peril of medical technology. In this dichotomous environ-
ment, an attempt to employ technology in the service of
pain and symptom management was difficult to realize in
the medical mainstream. For these reasons, hospice
emerged as a set of services that were delivered outside of
the hospital setting and within local communities. Hospice

Respiratory Care • November 2000 Vol 45 No 11

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Principles in Palliative Care: An Overview

was, in short, a reaction to the prevailing technology-driven
medical culture.

Against that backdrop, it took the broader societal de-
bate over physician-assisted suicide to bring the question
of palliative care to the fore of American medicine." A
review of the court cases and referendums related to phy-
sician-assisted suicide is beyond the scope of this paper. ' ---^
Suffice it to say that proponents of assisted death assert
that patients are entitled to a dignified death and the right
to control the timing and manner of their death. They
maintain that if patients have the right to refuse life-sus-
taining therapy, they also should also be allowed to hasten
their death through assisted suicide. 22-25

The argument extending the patient's right to refuse
life-sustaining therapy to a right to physician-assisted sui-
cide struck many as taking patient self-determination too
far.2*-27 jjjis tension helped to catalyze the palliative care
movement. Many opponents of physician-assisted suicide
promoted the provision of good palliative care as an al-
ternative to physician-assisted suicide. 2^-3°

The need to improve palliative care was further height-
ened by the Study to Understand Prognoses and Prefer-
ences for Outcomes and Risks of Treatments (SUPPORT).'' '
This study found that critically ill hospitalized patients
received inadequate pain relief and that their preferences
regarding end-of-life care were either unknown or simply
disregarded.^' This study also revealed that advance direc-
tives, as currently employed, did little to foster improved
end-of-life care. This data prompted greater interest in
palliative care by foundations, state and national panels, -^2..i.^
and professional societies,'''* and generated a reconsidera-
tion of health care agency and how patients and their sur-
rogates make care decisions. ^^s*

Political and Clinical Implications

In reviewing the development of British and American
palliative care, it becomes apparent that each has distinct
philosophical roots and antecedents. In contrast to the ear-
lier British experience, the American palliative care move-
ment gained prominence in the wake of a divisive debate
over the ethical propriety of physician-assisted suicide.
The British movement grew out of a religious and com-
munitarian tradition. The American movement, in con-
trast, gained prominence in response to secular and legal
developments that began with the assertion of patients'
rights in the 1960s and culminated in the debate over
physician-assisted suicide in the 1990s.^''

The relationship between physician-assisted suicide and
palliative care in American medicine is a complicated one.
It is paradoxical that the same contentious debate that
helped to draw attention to palliative care continues to
complicate the integration of palliation into the continuum
of care. Although palliative care should be judged on its

own merits, it is often seen through the prism of an ideo-
logical stance on physician-assisted suicide.-^*

In this section, I will illustrate how the origins of pal-
liative care in the United States influence routine care
issues encountered at the end of life. I will specifically
address DNR orders, the use of opioids in terminally ill
patients, decisions to remove ventilatory support, and fu-
tility disputes. I will consider in some detail how the con-
tinuing ideological tensions over assisted suicide put the
principles of palliative care at risk.

Negative and Positive Rights: Do-Not-Resuscitate
Orders in the Operating Room

In a rights-based framework, the question of bringing a
patient with a DNR order to the operating room raises an
ethical paradox. A DNR order is emblematic of the right to
be left alone, a negative right that is highly valued. But
when a patient is taken to the operating room, something
is being done — thus the paradox of asserting the right to be
left alone while seeking a surgical intervention.

Consider a patient with advanced colon cancer who has
an intestinal obstruction. All palliative care measures have
been unable to relieve the painful obstruction. A surgical
consultation is sought for the possibility of a diverting
colostomy. The surgeon agrees that the patient would ben-
efit from a colostomy but is reluctant to take a patient with
a DNR order to the operating room. Trained in the Amer-
ican medical context and conditioned to understand the
importance of respecting a competent treatment refusal,
she or he finds that a DNR order in the operating room is
confounding. How is it possible to respect this inviolable
negative right while exposing a patient to the risks of
surgery, intubation, and even iatrogenic cardiac arrest?-"

This intersection of negative and positive rights, how-
ever, becomes less problematic if we adopt the WHO frame-
work and view surgery as a palliative intervention that is
consistent with the goals of care. In this case, the proce-
dure is not meant to be curative, but rather is a means to
achieve better analgesia. If the patient dies during the pro-
cedure, death is an unintended side effect of the surgery,
which was designed as a palliative. The implication is
clear: surgical palliation and a DNR order are not mutually
exclusive when the goals of care are clear and when we
avoid judging palliation against curative expectations.*"

Opioids and the Deconstruction of Double Effect

In making the argument that death would be an accept-
able complication of surgical palliation, I implicitly in-
voked the ethical doctrine of double effect. Medical ethi-
cists often assert the doctrine of double effect, first advanced
by St Thomas Aquinas, to distinguish interventions in-
tended to relieve suffering from ones that intentionally

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Principles in Palliative Care: An Overview

hasten death, such as physician-assisted suicide.-*' This
doctrine has helped allay the deeply seated concern of
physicians that they are both culpable and causal agents
when a terminally-ill patient on opioids dies. The use of
double effect, though philosophically imperfect, has had
great instrumental value in clinical practice and the law. It
helps the anxious practitioner use opioids more liberally in
terminally-ill patients by highlighting the moral distinction
between intended consequences and ones that were fore-
seeable but unintended.

Despite the utility of double effect at the bedside and in
the law, it too has fallen prey to an ideological battle over
the ethical propriety of physician-assisted suicide. Advo-
cates of legalization have sought to equate double effect
with assisted suicide in order to legitimize assisted death."-
These rhetorical efforts to deconstruct double effect have
heightened physician reluctance to use opioids and have
undermined the security afforded by this philosophical for-
mulation.-*^

Interestingly, opponents of physician-assisted suicide
have also done a disservice to the instrumentality of dou-
ble effect. In an effort to prevent physician-assisted suicide
in Oregon, legislation introduced in Congress seeks to use
the Drug Enforcement Agency to regulate the use of opi-
oids at the end of life.''^'** Because the ethical doctrine of
double effect hinges on the sometimes ambiguous ques-
tion of the intent of the physician when prescribing the
medication, many physicians will opt to avoid this gray
zone and not prescribe needed medication to dying patients.

One could well envision a physician's concern when
prescribing opioids for a dying patient with cancer who
had been treated with pain medications for months before
death. Given the pharmacology of opioids and the devel-
opment of tolerance, the patient requires higher doses of
medication over time for an adequate analgesic effect.
When the patient dies, he or she will be on a large but
clinically appropriate dose of medication. Will physicians
be comfortable escalating doses of opioids to adequately
treat their patients when they also are worrying about
whether a law enforcement agent will appreciate that such
drug escalation is a function of pharmacology and disease
progression? Who will assure the concerned practitioner
that an overzealous prosecutor will not mistake appropri-
ate clinical conduct for physician-assisted suicide? Such
investigations have already occurred to the detriment of
appropriate end-of-life care and pain management.-*^-"'

Given these concerns, the enforcement provision could
have the unintended effect of leading physicians to be
even more hesitant to prescribe opioids, out of fear that
their use will trigger an investigation. Although the inten-
tion of the bill is otherwise, this provision would have the
dire de facto effect of criminalizing the use of opioids at

the end of life. This would be a tragedy for dying patients
and their families, who would have to watch them suffer.*

The Extubation Quandary

There is perhaps no action in respiratory care more emo-
tionally difficult than the act of extubating a patient. This
responsibility can be especially challenging when this task
is delegated to a respiratory therapist who has not been
involved in discussions about withdrawing life-sustaining
therapy.

It is critical that attending physicians appreciate the moral
agency of their colleagues and discuss care decisions with
those who might be entrusted with tasks related to the
withdrawal of life-sustaining therapy. These discussions
should be supportive of staff and explicitly address the
ethical and legal consensus that has emerged on the with-
drawal of life-sustaining therapy. '^■''°''' Specifically, the at-
tending physician should seek to assuage the reservations
of those who believe that withdrawal causes death. Central
to this discussion is asserting that there is a fundamental
causal distinction between removing an impediment to
death and engaging in an action that is both necessary and
sufficient to cause death.

As Daniel Callahan has cogently noted, ". . . only dying
people will die when life support is removed, not those of
us who are healthy.'"'- Thus the removal of a ventilator
only leads to the death of patients who have an underlying
disease process that requires ventilatory support. The mere
act of extubation will not cause death in an otherwise
healthy patient once awakened from sedation. Although
the removal of the ventilator is necessary to cause the
death, it alone is not always sufficient to cause a patient's
death. In this way, the removal of the ventilator contrasts
with physician-assisted suicide, which does not hinge upon
the patient's underlying condition.

Futility Disputes: The Antithesis of Palliative Care

Critical lessons can be discerned by dissecting a futility
dispute. In doing so, we can learn to better meet the needs
of patients and families, as outlined in the aspirational
model offered by the WHO. A futility dispute is in essence
the antithesis of palliative care as defined by the WHO.^

In a futility dispute, practitioners believe that dispropor-
tionate '"curative" interventions are being applied to an
incurable patient."*^ The application of these technologies
to patients can result in the promotion of pain and other

*This discussion of the clinical implications of the Pain Relief Promotion
Act is excerpted from testimony submitted by the author to the Senate
Committee on Health, Education, Labor and Pensions, as well as the
Judiciary Committee.

Respiratory Care • November 2000 Vol 45 No 1 1

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Principles in Palliative Care: An Overview

symptoms without any real hope of meaningful benefit.
Efforts at psychosocial support are also compromised dur-
ing a futility dispute. The provision of care felt to be futile
by practitioners invariably results in conflict with surro-
gates. This in turn can foster destructive practitioner
counter-transference that undermines the potential for heal-
ing.-'^" These conflicts threaten the well-being of the family
unit during the course of care and can complicate bereave-
ment. This discord violates the family-centered ethos of
the WHO statement.

In my experience as a clinical ethicist frequently called
upon to consult in futility disputes, I have observed that
most of these conflicts have an element of iatrogenesis."^*'^*
That is, there is a failure on the part of physician staff to
adequately engage the patient and/or surrogate in a dia-
logue about diagnosis, prognosis, and remaining therapeu-
tic or palliative interventions.-'^^'^* This failure can heighten
expectations and lead to requests for care that seem un-
reasonable to the informed clinician. However, these re-
quests often are understandable from the perspective of
family members who have not benefited from appropriate
and timely conversation with the physician.

We can trace the evolution of futility disputes if we
modify the familiar WHO graphic illustrating the transi-
tion of cure to care over time (Fig. 1). In this formulation,
the vertical (Y) axis = hope, and the horizontal (X) axis =
time. Tangent (a) represents the hopefulness of patient/
family over time for a mix of care versus cure. Tangent (c)
represents that of the clinician. In futility disputes where
patients or families demand care perceived as futile by
clinicians, we see a divergence of what is hoped for —
curative or palliative interventions — over time, as illus-
trated in Figure 1.* At the origin of tangents (a) and (c),
the time of diagnosis, patient/family and clinician all share
similar hopes. But in futility disputes, as the disease
progresses and the clinician gamers a deeper appreciation
of the inevitability of incurable illness, there is a failure to
communicate these impressions with the patient and/or
family.

Although there is a downward slope (dh/dt) to tangent
(a) because patient and family often perceive a deteriora-
tion, the negative inflection is not as deep as the clini-
cian's. Over time this leads to a widening gap between the
hopefulness of the clinician and that of the patient/family,
as represented in A = (a) - (c). The distance of patient/

*A less common futility dispute, in my experience, is one in which the
clinician wants to continue treatment over the objections of a patient or
family. In these situations, the dynamics are different and the patient/
family tangent (a) (of Fig. I ) reaches line (d) prior to the clinician. The
severity of the dispute would continue to be the delta (A) between the
patient/family and the clinician: A = (a) - (c). However, in this scenario,
the relationship of (a) to (c) would be the opposite of that depicted in
Figure I.

LESSONS FROM FUTILITY DISPUTES

' Patient/Family

CARE

HOPE

A=«

TIME

Fig. 1. Transition from cure to care over time. The vertical (Y)
axis = hope. The horizontal (X) axis = time. Tangent (a) represents
the hopefulness of the patient/family over time for a mix of care
versus cure. Tangent (c) represents the hopefulness of the clini-
cian. Tangent (b) represents the compromise or negotiated con-
sensus between the clinician and the patient/family. Tangent (d)
represents the level of hopelessness, which does not justify dis-
proportionate therapies. (Adapted from World Health Organiza-
tion. Cancer pain relief and palliative care. Geneva, Switzerland:
World Health Organization; 1 990.)

family expectations (a) and those of the clinician (c) also
affects the balance of care and cure as reflected in the
shaded parts of Figure 1. Futility disputes can be said to
develop when the delta or difference between (a) and (c)
becomes important and when clinician tangent (c) bisects
a level of hopelessness (d), which does not justify dispro-
portionate therapies. In this dynamic it is characteristic for
patients to be identified as imminently dying by the clini-
cian even though the patient/surrogate has not yet con-
sented to a DNR order. 5'

Conclusion: Achieving the Goals of Care

The implicit lesson from futility disputes — and the other
clinical examples just considered — is the importance of
enhanced communication between clinician, patient, and
family. Palliative care is simply the exchange of curative
goals of care for comfort measures. Such a transformation
of the clinical objective is only possible if the clinician can
ease patient and family down the tangent dh/dt gently over
time. The point is not to impose the clinician's perspective
on the patient and/or family but to negotiate a compro-
mise. Indeed, it is critical to note that the clinician's tan-
gent is not necessarily accurate and may be overly reduc-
tionistic or ill-informed of the patient's cultural or religious
beliefs.

Instead, the goal is to reach a mutual understanding
about disease trajectory and what goals of care would be
appropriate given the changing medical facts and the
broader psychosocial narrative. The goal should be com-
promise — or a negotiated consensus — as depicted in tan-

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Principles in Palliative Care: An Overview

gent (b). In successful efforts of conflict resolution over
futility disputes, the slope of both tangents (a) and (c)
change. This is indicative of changing expectations about
disease trajectory.

When this compromise is reached, the perspectives of
clinician, patient, and family coalesce into a consensus
that allows for the transformation of the goals of care from
one dominated by cure to one that is more accepting of
care. That moment often represents an epiphany because it
is only then that the principles of palliative care are real-
ized both in theory and in practice.

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cipal Investigators. JAMA 1995;274;1591-1598.

32. Field MJ, Cassel CK, editors. Approaching death: improving care at
the end of life. Washington DC: Institute of Medicine-National Acad-
emy Press; 1997.

33. Merritt D, Fox-Grage W, Rothouse M, Lynn J, Cohn F, Foriini JH.
State initiatives in end-of-life care: policy guide for state legislators.
Washington DC: National Conference of State Legislatures and The
Center to Improve Care of the Dying; 1998.

34. American Board of Internal Medicine. Caring for the dying; identi-
fication and promotion of physician competency. Philadelphia:
ABIM; 1996.

35. Fins JJ. From contract to covenant in advance care planning. J Law
Med Ethics 1999;27:46-51.

36. Singer PA, Martin DK, Lavery JV. Thiel EC, Kelner M, Mendelssohn
D. Reconceptualizing advance care planning from the patient's per-
spective. Arch Int Med 1997;158:879-884.

37. Fins JJ. Truth telling and reciprocity in the doctor-patient relationship:
a North American perspective. In: Bruera E, Portenoy RK. editors.
Topics in palliative care. Vol 5. New York: Oxford University Press, (in
press)

38. Fins JJ, Bacchetta MD. Framing the physician-assisted suicide and
voluntary active euthanasia debate: the role of deontology, conse-
quentialism, and clinical pragmatism. J Am Geriatr Soc 1995;43:
563-568,

39. Troug RD, Do-not-resuscitate orders during anesthesia and surgery.
Anesthesiology 1991;74:606-608,

40. Fins JJ. Case study commentary: palliation in the age of chronic
disease. Hastings Cent Rep I992;22:41^2.

41. Beauchamp TL, Childress, JF. Principles of biomedical ethics, 4th
ed. New York: Oxford University Press; 1994: 206-211,

42. Quill TE. Principle of double effect and end-of-life management:
additional myths and a limited role. J Palliat Med 1998;1:333-336.

43. Fins JJ. What medicine and the law should do for the physician-
assisted suicide debate. CCAR Journal 1997(Spring):46-53.

44. Pain Relief Promotion Act of 1999. HR 2260; 1999.

45. Fins JJ. Letter to the Editor: Why doctors fear the pain relief act. The
Wall Street Journal; Nov 16, 1999: A-31.

46. Orentlicher D, Caplan A. The Pain Relief Promotion Act of 1999: a
serious threat to palliative care. JAMA 2000:283:255-258.

47. Stem HC. State medical boards and pain management. J Pain Sympt
Manage 1998;15:379-81,

48. State of Virginia Board of Medicine action against WiUiam E Hiuwitz
MD, 05-14-% 0101-028900. (Information at http://www.dhp.
state. va.us/med/disc/juljun96.htm.)

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Principles in Palliative Care: An Overview

49. Hoover v Agency for Health Care Administration, 676 So 2d 1 380
(Fla Dist Ct App 1996).

50. Kamissar Y. In defense of the distinction between terminating life
support and actively intervening to promote or bring about death. Bio
Law 1996;2:S145-S149.

51. Miller FG, Fins JJ, Snyder L. Assisted suicide and refusal of treat-
ment: a valid distinction? University of Pennsylvania Center for
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132:470-475.

52. Callahan D. Assisted suicide is a power too far. Newsday: Apr.
1996: 11.

53. Solomon MZ, Jennings BJ, Crigger BJ, Fins JJ, Moskowitz EM,
Heller KS. "Futility," decisions near the end of life. Vol 7. Newton
MA: Education Development Center; 1997.

54. Fins JJ. Breaking the silence: futility, fear and anger. In: "Futility,"
decisions near the end of life. Vol 7. Newton MA: Education De-
velopment Center; 1997:26-27.

55. Fins JJ. From indifference to goodness. J Religion Health 1996;35:
245-254.

56. Fins JJ, Bacchetta MD, Miller FG. Clinical pragmatism: a method of
moral problem solving. Kennedy Inst Ethics J 1997:7:129-145.

57. Solomon MZ. How physicians talk about futility: making words
mean too many things. J Law Med Ethics 1993;21;231-237.
Fins JJ. Futility in clinical practice: report on a Congress of Clinical
Societies. J Am Geriatr Soc 1994;42:861-865.
Fins JJ, Miller FG, Acres CA, Bacchetta MD, Huzzard LL, Rapkin
BD. End-of-life decision-making in the hospital: current practices
and future prospects. J Pain Symptom Manage 1999;17:6-15.

Discussion

Burt: That was quite interesting, and
particularly to run through it in 30 min-
utes — very impressive. The question I
have is about the use in your talk of
the European contrast, and your im-
plicit message that they do it better in
Europe, and, in particular, they do it
better in dealing with the confusion
about whether physicians cause death
or the underlying disease causes death.
I want you to explore how real this
contrast is. You suggested that the phy-
sician-assisted suicide issue has been
very powerful in this country, and
that's quite right, but, of course, phy-
sician-assisted suicide began in the
Netherlands, and that in itself was a
quite striking precedent for us in the
United States.

My factual question that leads to
this normative issue is: Was it not the
case that the physician-assisted sui-
cide debate played a significant role
in Europe — at least parallel to what
had happened here 20 years later, when
physician-assisted suicide was effec-
tively endorsed in the late 1970s in
the Netherlands? I'm skeptical of the
sharp distinction that you're drawing
that in Europe it's better, that assisted
suicide is not kicking around there and
making people crazy, but here in the
United States we're off our rocker.

Fin.s: First of all, I think it is better
in Great Britain. And I think that the

British context that has palliative care
that is integrated from peripatetic
teams where people walk around in
the hospital. They have hospice. They
have in-patient hospice. They have a
continuum of care that reflects an ac-
ceptance of the inevitability of death
in ways that we really have not been
able to embrace here. I think that the
Netherlands is really distinct from the
British experience.

There's a wonderful paper by Di-
ego Gracia, who's a Spanish bioethi-
cist, who has talked about the "com-
munitarian" bioethics in Southern
Europe and in the Catholic countries,
versus the more Protestant countries
where the Reformation occurred.' He
goes back to the extent of the Holy
Roman Empire and talks about differ-
ent motivating principles. Now, En-
gland, of course, was a Catholic coun-
try that had a kind of falling out. 1
think most of these arguments are re-
ally difficult to parse, and they have
historic roots, but I do think that the
hospice movement and palliative care
movement does have, as an entity,
whether it's in Europe or the United
States, religious roots. I think tho.se
religious roots are discordant with any
secular tradition. So if you're in a
highly secularized, libertarian kind of
context, you're going to get a discon-
nect. That could exist, conceivably,
and would, in the Netherlands, but I
think there are some countries that are
more secularized and libertarian.

I think that the way palliative care
explosively came on the American
scene in the wake of the assisted-sui-
cide debate was organically com-
pletely different from the way it hap-
pened in the context of British hospice.
There was a more incremental and cu-
mulative effect, and a charismatic fig-
ure in England was Cicely Saunders
(there's a paper that describes this
wonderfully).- One could argue that
she was a charismatic figure in En-
gland as Jack Kevorkian was a char-
ismatic figure in the United States, at
least in bringing death and dying to
the fore.

I think there's probably no perfect
answer to your really thoughtful ques-
tion, but at least it's a heuristic device,
and as an argument, when there is a
discordance between what I would call
the religious roots of the palliative care
movement and the secular traditions
of any mainstream, you're going to
get a problem with the translation of
principles into practice. That was my
original point.

REFERENCES

1. Gracia D. The intellectual basis of bioethics
in southern European countries. Bioethics
1993;7:97-107.

2. James N, Field D. The routinization of hos-
pice: charisma and bureaucratization. Soc Sci
Med 1992;34:1363-1375.

Silvestri: I wonder if I could follow
up on that — this whole idea of the re-

1326

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Principles in Palliative Care: An Overview

ligious roots. I stumbled on it acci-
dentally in my research recently and
started doing a lot of reading. There's
this whole really burgeoning United
States literature on spirituality and re-
ligiosity. In fact, in The Annals of In-
ternal Medicine in the last month or
two was a wonderful little piece on it
that I never would have read had I not
stumbled across this.'

We've done a great job of separat-
ing church and state in our country. I
think physicians are incredibly care-
ful about not involving religion and
end-of-life issues, to the point that
when we interview patients and fam-
ily members about the 6 or 7 things
that influence their decision to have
life-extending cancer treatments, we
just discovered that after the cancer
doctor's recommendation for treat-
ment as number one, (and cancer doc-
tors, by the way, also think their opin-
ion counts as number one), number
two on patients' and family members'
lists (who were interviewed indepen-
dently of each other) was faith in God.
I threw that question in as a complete
"throw-in."

Where did it end up on physicians'
lists? It ended up after the ability to
treat and cure the disease, adverse ef-
fects of therapy, spouse's recommen-
dation, children's recommendations:
faith in God was seventh. It was the
last and final thing on their list. And
that finding was highly statistically
significant. Patients see this as impor-
tant. Our roots in the United States
are, in general, the European religious
roots. Whether you're religious or not,
our roots are in that European tradi-
tion. And I don't think family mem-
bers and patients understand why phy-
sicians are so adverse to talking about
this.

I've actually started out conversa-
tions with people saying, "I'm not the
most religious guy in the world, but I
stumbled on this in my research,"
which is even my own way of pro-
tecting against that. I wonder if you
think the way to get to good palliative
care (and believe me at the end of life.

people are searching for God as
well) — I wonder if you think that has
to be a more important part of the
interaction between patients and their
doctors?

REFERENCE

1 . Gunderson L. Faith and healing. Ann Intern
Med 2000;132:169-172.

Fins: The Fetzer Institute study on
spirituality and end of life confirms
everything you say, and yet you
wouldn't know that from how we talk
to patients.' I recently wrote a paper
called "From Contract to Covenant in
Advance Care Planning" in which I
argued that the framework we use for
advance care planning and advance
directives is very legalistic, very con-
tractual,- but maybe it should move
to a more "covenantal" arrangement
between patients and their surro-
gates. Contracts are quid pro quos.
Covenants are reciprocating instru-
ments, and they cut deeper into per-
sonal identity.

I think that your point is that we've
created a kind of legal framework be-
cause we are so obsessed with over-
coming the technological imperative
and allowing ourselves to be let alone,
and that this really has not been able
to transform itself into accommodat-
ing the needs of patients and their
deeper motivations. So I agree with
you, and I think it's not a question of
whether or not physicians should pray
with patients and things of that sort
(which, in my view, is a little bit of a
boundary violation). Rather, I think
faith and prayer and the traditions of
the patient are something that needs
to be embraced by the care team be-
cause it is important.

Interestingly, chaplains are now
beginning to appear in the medical
record, whereas 5 or 10 years ago,
they were not in the medical record.
I think that's illustrative of the place
and the standing they have at the
bedside.

REFERENCES

1. The George Gallup International Institute.
Spiritual beliefs and the dying process: a
report on a national survey conducted in the
Nathan Cummings Foundation and Fetzer
Institute. Princeton NJ: Gallup Institute;
1997.

2. Fins JJ. From contract to covenant in ad-
vance care planning. J Law Med Ethics 1999;
27:46-51.

Heffner: I wonder, too, if our per-
spective of what goes on at the end of
life is tainted somewhat by academic
physicians' egocentric viewpoints in
that the studies are done in major ur-
ban academic medical centers, which
may have more of a secular bent than
small community hospitals or denom-
inational religious-based hospitals in
the community. Many communities
have a long tradition of hospitals in-
corporating clergy into patient care.

Fins: They weren't recorded in the
medical record.

Heffner: But they were in some hos-
pitals that I've practiced in. Maybe
we physicians suffer from the egocen-
tric viewpoint that everything that is
important begins when we walk into
the room and ends when we leave.
Perhaps there is a subterranean pro-
cess occurring with families and their
clergy and neighbors that we need to
capture to really get a full and com-
prehensive viewpoint of what the dy-
ing process is about. The SUPPORT
studies and other investigations that go
on in major, secular urban medical cen-
ters may miss much of this process.'

REFERENCE

1. A controlled trial to improve care for seri-
ously ill hospitalized patients. The study to
understand prognoses and preferences for
outcomes and risks of treatments (SUP-
PORT). The SUPPORT Principal Investiga-
tors. JAMA 1995;274:1591-1598.

Fins: I would agree. Just to con-
tinue the religious motif, there are very
few women in the Talmud, and there
was one rabbinic scholar who wrote a

Respiratory Care • November 2000 Vol 45 No 11

1327

Principles in Palliative Care: An Overview

paper called "Women Who Are Called
by Name," about women who appear
in the Talmud, and they're few.' But
that's not to say that they weren't there.
So there is a lot of work that is
happening that the doctor doesn't see.
There's a lot of work doctors do that
patients don't see, when we check
records, and we check labs, and that
sort of thing. But I think there's also
activity and discussions that we aren't
aware of, and I think that to have more
comprehensive care it requires an in-
terdisciplinary team and team meet-
ings, which is one of the phenomena
of hospice, where patients are engaged
by an interdisciplinary set of individ-
uals who bring different skill sets to
the bedside, and they communicate
with each other, which is not neces-
sarily the way the hospitals work.

REFERENCE

1 . Ehrlich AB. Women who are called by name.
Rabbinic Thesis. New York: Hebrew Union
College, Jewish Institute of Religion; 1988.

Hansen-Flaschen: I'm interested in
the graph you showed depicting a
growing disparity in hope between
family members and health care giv-
ers as time goes on during a critical
illness. We've come to understand
what I think is the same idea a little
bit differently. Health care providers
are very interested in prognosis — the
prediction of best achievable outcome
of intensive care. Family members are
the ones who are invested in hope,
which is something quite different.
Flames of hope often bum brightest
as the prognosis dims.

There's a very poor relationship be-
tween the emotion of hope experienced
by people facing the fear of loss and
the dispassionate prognosis considered
by caregivers. If we don't understand
and accept that, we run into an obsta-
cle that becomes divisive and conflict-
generating.

It's not possible to break down the
hope of a wife of 47 years by present-
ing her with facts and prognoses. In
fact, to move forward, we have to ac-

cept and support a person's hope and
somehow redirect care without under-
mining it. I think the idea is very im-
portant, and it's absolutely central to
the conflicts that we currently call "fu-
tility."

Fins: I would just say that you never
want to deprive people of hope, but
you may want them to hope for dif-
ferent things and transform their hope-
fulness. You see that in hospice, where
people are hoping for different kinds
of relief. They've given up the hope
for a cure, but they're hoping for com-
fort, closure, that sort of thing. So 1
think it's about transforming expecta-
tions and goals of care. But you can
see discordance between the expecta-
tions of the practitioner and the fam-
ily member where there is bad com-
munication. The further along we get
in that graph, the more difficult it is to
reconcile the discordance.

Curtis: I want to ask you to talk a
little about how we can help move
palliative medicine into the main-
stream. I'll share an observation and
see if you agree and if there's some-
thing we can do about it. It seems to
me that palliative medicine has grown
up taking care of patients in hospice
and is now on the verge of becoming
a specialty within the United States
and is finding itself in the awkward
position of a turf war over dying peo-
ple. It seems to me that we need to
break the model of "palliative medi-
cine takes care of dying people" and
find a way for palliative medicine spe-
cialists and people interested in this area
to work with providers in other areas.

Fins: I think dying people belong to
us all. I see the need for specialization
to have expert teachers, but I'm con-
cerned about a sequestration of the care
of the dying to a small subset of prac-
titioners. Palliative care competencies
are really a generalizable competency.
We're doing a project in New York
State going around to all the medical
schools and surveying what is in the

curriculum.' It's funded by the Robert
Wood Johnson Foundation. One of the
arguments that we are making to deans
is that to improve time for palliative
care in the curriculum is to provide
time for communication skills, clini-
cal assessment, and sensitivity to psy-
chosocial issues. So it should really
be mainstream.

The parallel that I would make.
Randy, would be that every practitio-
ner knows how to use antibiotics and
will go a round or two or three with
antibiotics before they call the infec-
tious disease consultant in for an in-
tractable problem. There's probably
not the comparable level of compe-
tence with the use of opioids or pain
or symptom management. That is sort
of a basic competency that should be
promoted. We're well-advised to
avoid the turf battle you describe and
seek to integrate palliative care as a
generalized competency.

REFERENCE

1. Meekin SA, Klein J, Fleischman AR, Fins
JJ. Development of PEAT, a palliative edu-
cation assessment tool for undergraduate med-
ical education. Acad Med. (in press).

Rubenfeld: I want to try to come
back to what John Hansen-Flaschen
said because I think it's at the essence
of how to incorporate palliative care
into respiratory care, or at least into
the critical care side of this. In a lot of
ways, your point about the skills of
palliative care being generalizable is
important. I realize in the intensive
care unit when I have a problem that
requires an infectious disease consul-
tation. I realize when I have a prob-
lem that requires a cardiology consul-
tation. But I don't think I know yet
when I have a problem that requires a
palliative care consultation.

I actually don't think (I may be
wrong) that many physicians or inten-
sivists have problems with the symp-
tom management side of this. I think
it may come up. 1 don't think this has
really been defined yet. Clearly, lots
of us (including me) have problems

1328

Respiratory Care • November 2000 Vol 45 No 11

Principles in Palliative Care: An Overview

with a lot of these other issues — set-
ting goals, for example. So perhaps
the question in this comment is: How
can we teach physicians and clinicians
in general when to recognize that they
have a palliative care problem?

Fins: There's a Spanish philosopher,
Jose Ortega y Gasset. who says "The
uneducated eye does not see." I think
the first thing we need to do is to train
medical students, residents, and our-
selves to be aware of the context of care.
For example, in that GCAT [Goals of
Care Assessment Tool] document that I
demonstrated, if a patient knows their
diagnosis but doesn't know the progno-
sis, but the family knows everything,
that's what the philosopher John
Dewey would call a problematic situ-
ation. You need to recognize the prob-
lematic situation before you can en-
gage in inquiry. We have to teach better
observation skills because problems
are always apparent in retrospect, but
not always clear prospectively.

So at Cornell we just initiated a
course in the third year, a required
clerkship, where students actually
work in the hospital for two weeks,
without direct clinical responsibilities,
on a ward of their choosing, and also
a week on the pain and palliative care
service.' They engage in what anthro-
pologist Rene Fox calls "participant
observation." The goal is to observe.
It's about history-taking and watching
what's going on, and only then can
they engage in what we call self-re-
flective practice, to be able to say there
is a problem here and let's try to en-
gage in it.

There's a wonderful book by
Donald Schon called The Reflective
Practitioner, in which he outlines how
practitioners think in action. ^ It's re-
ally about observing, and then some
little light goes off that says "Oh, we've
got a problem here." Those of us who
engage as consultants in pulmonary
medicine or clinical ethics, we get
called when the problem is front and
center, and we prefer not to be called

if practitioners could identify these
things prospectively.

So I think it's really about observa-
tion skills and giving people the op-
portunity to not be censored, to allow
themselves to express their opinion.
Everybody has moral agency, and they
should be allowed to talk about it, es-
pecially folks in a chain of command
like nurses or medical students or re-
spiratory therapists who may not al-
ways be acknowledged to have that
kind of agency.

REFERENCES

1. Fins JJ. Storey-Johnson CS, Bernstein A,
Payne R. A required clerkship designed to
promote self-reflective practice and develop
competencies in clinical ethics and end-of-
life care (abstract). J Gen Intern Med 2000;
15:212.

2. Shon D. The reflective practitioner: how pro-
fessionals think in action. New York: Basic
Books; 1983.

Levy: I would emphasize the im-
portance of the point that you're both
making. At consensus conferences like
this we tend to think that everybody
agrees that there is a problem with not
understanding or appreciating the need
to improve our ability to provide good
palliative care. My experience with the
Robert Wood Johnson intensive care
unit end-of-life group — and my per-
sonal experience — is that very, very
good academic and nonacademic com-
missions often just don't feel that they
need any improvement in their end-
of-life skills.

I think one of the biggest challenges
we face is how to, in a non-threaten-
ing way, encourage people to look at
end-of-life skills the way you would
look at any kind of medical skills, such
as line insertion or improving the use
of antibiotics. That's something that I
hope will be the theme of the whole
conference. If we can't get over that hur-
dle, it really doesn't matter what kind of
strategies we come up with.

Fins: Nathan Cherny demonstrated
that by looking at physicians' self-
perception about their competency

with opioids, and he actually tested
them and found that they overesti-
mated their competence dramatically,
of course to the detriment of patients.'
There's something special here about
avoiding behavior where people prob-
ably wouldn't overestimate in quite
the same way.

I don't know about the study of an-
tibiotics, but antibiotics are not as
charged as, say, opioids. Antibiotics
save lives. Opioids are more compli-
cated, and we have ambivalence about
that. It's interesting that physicians
know how to use naloxone but are
hesitant to use opioids.

I wrote a paper about looking at
such errors of omission and commis-
sion in pain management.- There's
something much more weighty about
our ambivalence that we really have
to get at the fundamental reservation
before we can engage them intellec-
tually. This is the WHO analgesic lad-
der, for example.

REFERENCES

1. Cherny NI, Catane R. Professional negli-
gence in the management of cancer pain: a
case for urgent reforms. Cancer 1995;76:
2181-2185.

2. Fins JJ. Acts of omission and commission in
pain management: the ethics of naloxone use.
J Pain Symptom Manage 1999;17:120-124.

Burt: I want to press you on an
underlying premise of Randy Cur-
tis' s question about turf wars. Is it
your view, Joe, that the separate or-
ganizational existence of hospice is
a barrier at this moment or at some-
time in the foreseeable future to the
accomplishment of what you have
in mind and that we should look to-
ward folding hospice in rather than
maintaining it as an independent sep-
arate structure?

Fins: Yes, I think that ultimately we
need to bring hospice type of care and
the hospice mentality into the main-
stream hospital: one, because many pa-

Respiratory Care • November 2000 Vol 45 No 11

1329

Principles in Palliative Care: An Overview

tients die in the hospital. In some set-
tings it's over 60-70%, depending on
bed saturation. More importantly for
medical education — because this is
where our trainees are going to have
their views formed — I think we're go-
ing to have to bring the hospice expe-
rience into the mainstream hospital and
make the hospital itself more hospita-

ble. That would make the hospital
more humane.

I would really like to overcome the
dichotomization between palliative
care and curative care and try to focus
on that relationship between caring and
curing that was on that slide. If a child
breaks his arm, you're going to spend
95% of your effort trying to fix the

arm, but you're still going to attend to
the pain needs of that child. Pain and
symptom management and curative
medicine are not binary, they're syn-
ergistic. So I'm for integration. That's
why I'm hesitant and concerned about
the desire to create a new specialty, be-
cause I think that might further dichot-
omize practice.

RE/PI

OiRE

^%.rcjouii\aVX^^

1330

Respiratory Care • November 2000 Vol 45 No 1 1

Dyspnea Assessment

Helen M Sorenson MA RRT

Introduction
Historical Perspective
History and Pliysical Exam
Clinical Measurement of Dyspnea

Dyspnea During Exercise

Dyspnea and Activities of Daily Living

Dyspnea and Health-Related Quality of Life

Symptom Assessment
Communicating Versus Noncommunicating Patients

Communicating Patients

Noncommunicating Patients

Dyspnea Assessment and Controlled Mechanical Ventilation

Dyspnea Assessment and Nonventilated Patients
Confounding Factors

Summary: Assessing Dyspnea in Terminal Care

[Respir Care 2000;45(1 1): 133 1-1 338] Key words: dyspnea assessment, chronic
obstructive pulmonary disease, COPD, Borg scale. Baseline Dyspnea Index, Visual
Analog Scale, Shortness of Breath Scale, Oxygen Cost Diagram, symptom assess-
ment.

Introduction

The tragedy of old age is not that each of us must
grow old and die, but that the process of doing so
has been made unnecessarily and at times excruciat-
ingly painful, humiliating, debilitating, and isolating.

— Robert Butler'

Better end-of-life care is a broad issue that will ulti-
mately affect every family across the country. In pulmo-
nary medicine, improving care for the dying chronic ob-
structive pulmonary disease (COPD) patient has always

Helen M Sorenson MA RRT is affiliated with Metropolitan Community
College, Omaha, Nebraska.

A version of this paper was presented by Ms Sorenson during the Respira-
tory Care Journal Conference, Palliative Respiratory Care, held May 19-
21, 2000 in Canciin, Mexico.

Correspondence: Helen M Sorenson MA RRT, Metropolitan Commu-
nity College, 5730 N 30th, #18. Omaha NE 68111. E-mail:
hsorenson @ metropo.mccneb.edu.

been a challenge. With the increasing prevalence of COPD
and a growing awareness of palliative medicine, the timing
may be ideal to focus on special patient care consider-
ations in end-stage COPD and other chronic lung diseases.

Palliative care, according to one definition, is the compre-
hensive, coordinated, and concentrated relief of both pain and
suffering in terminally ill or incurably ill patients. -

Simply stated, palliative care is comfort care. Dyspnea
is a common symptom that frequently detracts from the
comfort of terminally ill patients. Studies reveal that in the
last weeks of life 90% of patients with COPD,-^ 90% of
patients with lung cancer,* and up to 70% of hospice pa-
tients'*'' experience dyspnea.

Effective symptom management is paramount to cham-
pioning the concept of a "good death." In order to manage
dyspnea it is helpful to first assess dyspnea. Since this
symptom manifests differently in each patient, it would be
impossible to design a one-size-fits-all instrument to as-
sess dyspnea or serve as an outcomes measure in dyspnea
control. To that end, this article will introduce a variety of
assessment instruments that have been developed over the
years, in an effort to quantify a sensation that can only be
described by the person who experiences it.

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Dyspnea Assessment

Historical Perspective

Dyspnea is not always abnormal. Healthy subjects ex-
perience dyspnea with vigorous exercise. When individu-
als experience dyspnea at rest or with slight exertion, how-
ever, it is associated with a dysfunction or disorder of a
body system. Ironically, the severity of the dysfunction
and the degree of dyspnea do not always correlate. This
discrepancy between disease and symptomatology has been
acknowledged for the past 40 years.* Even the apparent
patient discomfort related to the work of breathing, as
perceived by the health care practitioner, and the level of
discomfort voiced by the patient are not always in syn-
chrony.

There have been many attempts to standardize both the
knowledge base about and assessment of dyspnea. Much
of the research has been done in an effort to understand the
patient's degree and intensity of breathing discomfort.

In 1905, Haldane and Priestley collaborated on research-
ing the regulation of lung ventilation. A quote from their
published work is as follows;

In the course of the experiment it was noticed, not
only that the hyperpnea produced by rebreathing
expired air was due solely to excess of carbon di-
oxide, but that this hyperpnea, so far as could be judged,
was exactly similar to that produced by muscular ex-
ertion. The hyperpnea produced by want of oxygen on
the other hand, was accompanied by subjective feel-
ings and cyanosis, such as are never noticed in the
case of normal hyperpnea from exertion.''

Presumably, this subjective feeling was dyspnea. Means
and Meakins further advanced the knowledge of dyspnea
by studies they conducted in the 1920s.'5 Interesting as-
pects of the physiology of respiration were described in
the late 1950s and early 1960s by Dudley, Martin, and
Holmes.* In 1965, Julius Comroe summed up his obser-
vations of dyspnea by concluding that there may be as
many as 5 or 6 types or grades of breathlessness, including
an awareness of increased ventilation, shortness of breath,
deep breathing associated with exercise, hindered breath-
ing, suffocation, and the sensation at the breaking point of
breath-holding.'

Can dyspnea be measured? Yes, if using an appropriate
instrument or scale. Numerous scales have been proposed
over the last 70 years to quantify the experience of dys-
pnea. In 1952, Fletcher published a 5-point dyspnea rating
scale. This scale was used to explore the relationship of
dyspnea with activity in patients with lung disease as com-
pared to dyspnea with activity in healthy individuals of
comparable age.'" A revised version of Fletcher's original
rating scale focused on assessing dyspnea while walking
or climbing stairs. This revised clinical rating scale has

also been referred to as the Medical Research Council
(MRC) dyspnea scale." This scale was useful in compar-
ing levels of dyspnea related to activity in subsequent
patient visits but was not helpful in determining the effi-
cacy of therapeutic interventions in patients with dyspnea.
The Oxygen Cost Diagram was an instrument designed in
the late 1970s to measure dyspnea associated with activ-
ities of daily living (ADL).'^ The Baseline Dyspnea Index,
a clinical index developed in the 1980s, also assessed dys-
pnea associated with ADL.'-^ In 1962, a 21 -graded scale
was described by Borg to measure perceived exertion dur-
ing physical exercise.'"* In 1970, the rating scale was
changed to a 15-grade scale with values from 6 to 20, to
match the variation in heart rate from 60 to 200 beats per
minute. '5 A modified Borg scale with a to 10 numeric
rating scale was subsequently developed to measure se-
verity of dyspnea after performing a specific task."* The
Visual Analog Scale (VAS), similar in design and intent to
the Borg scale, was designed in the 1980s.*

More recently a number of newer dyspnea assessment
scales have been developed. Many of these can be de-
scribed as instruments that measure the influence of dys-
pnea on health-related quality of life (HRQoL). These will
be discussed in greater detail in a forthcoming section.

History and Physical Exam

In palliative care, assessment of distressing symptoms
needs to be as accurate as possible. Effective symptom
control is impossible, however, without effective commu-
nication. Taking the patient's history and proceeding with
the physical exam can set the tone for collaborative symp-
tom relief.

It has often been stated that 75% of what you need to
know about your patient can be gleaned from the history,
before the physical exam is conducted.'* In COPD, assess-
ing dyspnea is a critical part of the patient evaluation.
Because dyspnea is triggered by so many variables and
presents in so many degrees of severity, a definitive diag-
nosis is often elusive. In general terms, dyspnea can usu-
ally be classified as physiologic, pathologic, neurologic, or
psychogenic (Table 1).

Conducting a patient history and listening for the re-
sponses can provide clues for categorizing the source of
the dyspnea. Communicating at this point is an important
part of therapy, and can require even greater thought and
planning than a drug prescription.''' Since the perception
of dyspnea is subjective, the best source of descriptive
information is the patient.

The physical exam and laboratory values provide data
that are useful but not necessarily diagnostic. An increased
respiratory rate has not always been shown to correlate
well with dyspnea. In a group of patients with the same
degree of air flow limitation, dyspnea varies consider-

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Dyspnea Assessment

Table I . General Classifications of Dyspnea

Physiological

Pathological

Neurological

Psychogenic

Exercise

Hypoxia resulting from:

a) High altitude

b) Low Fin,

Acute processes

Infection

Inflammation (airways)
Obstruction (airways)
Chest trauma
Pleural disorders
Pulmonary edema

(cardiogenic/noncardiogenic)
Pulmonary emboli
Cardiac dysfunction

Chronic processes
COPD

Interstitial disease
Anemia

Pulmonary restrictive disease
Pulmonary vascular disease

Brain tumor
Brain injury
Brain attack (CVA)
CNS inflammation
Increased ICP
Encephalopathy

Hyperventilation

Dyspnea triggered by tension, restlessness, panic,
irritability, hostility, anxiety, and anger
Pain related dyspnea

■ fraction of inspired oxygen. CVA = cerebrovascular accident. CNS - central nervous system. ICP = intracranial pressure. COPD = chronic obstructive pulmonary disease.

ably."* How often have we cared for patients who present
with rapid respiratory rates, but who, upon questioning,
deny dyspnea? Arterial blood gas measurements provide
information about acid-base status, ventilation, and oxy-
genation but are not predictive of dyspnea. The relation-
ship between dyspnea and oxygenation status is poorly
understood." One would expect patients with the most
severe airway obstruction, as assessed by pulmonary func-
tion tests (PFTs), to be the most dyspneic, but that does not
always hold true. Several studies have investigated the
correlation between dyspnea and forced expiratory volume
in the first second, with conflicting results. Studies con-
ducted with the express purpose of quantifying breathless-
ness found either no correlation or a weak correlation be-
tween dyspnea and forced expiratory volume in the first
second.-" This is not surprising, as PFTs are an objective
measure and dyspnea is subjective.

A more recent study investigated the influence of body
weight on the severity of dyspnea in COPD. Based on their
findings, the researchers concluded that underweight pa-
tients with COPD are more dyspneic than normal-weight
COPD patients.2' This speaks to the long held clinical
impression that patients with emphysema (pink puffers)
seem to exhibit dyspnea more often than chronic bronchi-
tis (blue bloater) patients.

Clinical Measurement of Dyspnea

Loss of control over one's own life and destiny are
major concerns for many patients. Dealing with a life-
threatening illness compounds the problem. The sensation
of dyspnea, for many, is a sign that they have surpassed

their physical limit and signals loss of control. ^^ Severe
dyspnea can lead to a feeling of panic. Panic increases the
work of breathing, increases oxygen consumption, and fur-
ther erodes away any sense of self-control.

Clinical measurement of dyspnea can potentially ac-
complish many goals. Initially, an assessment will assist
the health care professional in establishing a level from
which to treat the patient. Measurement in a clinical set-
ting can provide a standard against which therapeutic in-
tervention can be evaluated. A patient-derived benefit, par-
ticularly in those who can communicate, is a sense of
involvement. Even though the patient may be accepting of
a terminal diagnosis, self-involvement in care can generate
a more positive attitude.

Traditionally, health care providers have focused on hard
data such as arterial blood gas values and PFT results to
assess lung function, rather than the soft data of symptom
assessment and quality of life.-^ Factor analysis has dem-
onstrated, however, that dyspnea provides a separate di-
mension not available by measuring PFTs. 2"* Instruments
used to measure dyspnea provide different degrees of quan-
tifiable information. Many instruments rely on the ability
of the patient to communicate. If a patient cannot effec-
tively communicate his or her sensations, a discriminative
(more vs less) evaluation will have to be made by the
health care professional.

Clinical dyspnea measurement instruments fall into 3 cat-
egories: (1) scales that measure dyspnea during exercise, (2)
assessment forms that quantify dyspnea associated with ADL,
and (3) disease-specific dyspnea assessment questionnaires
that measure health-related quality of life.

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Dyspnea Assessment

Table 2. Dyspnea Assessment Instruments Grid

Instrutment

Items

Administered

Completion Time

DYSPNEA AND ADL

1. Modified Medical Research Council
(MRC)

2. Baseline Dyspnea Index (BDI)

3. Oxygen Cost Diagram (OCD)

4. University of California San Diego Shortness of Breath
Questionnaire (UCSD/SOBQ)

5. American Thoracic Society Shortness of Breath Scale
(ATS/SOB)

1-5

5 grades, 3 categories 0-12

Visual analog scale: 0-100

0-4

Self

Self
Self
Self

Self

< 10 min

DYSPNEA AND EXERCISE

1. Borg

2. Visual Analog Scale (VAS)

1-10

100 mm scale

Numeric scale
Visual analog

< I min

< 1 min

DYSPNEA AND HRQoL

Generic

1. SF-36 Short Form

2. Nottingham Health Profile

3. Sickness Impact Profile

4. Quality of Weil-Being Index

5. Breathing Problems Questionnaire

6. Hospital Anxiety and Depression
Disease specific

1. St George's Respiratory Questionnaire (SGRQ)

2. Chronic Respiratory Disease Questionnaire (CRQ)

3. Seattle Obstructive Lung Disease Questionnaire
(SOLQ)

4. Pulmonary Function Status and Dyspnea
Questionnaire (PFSDQ)

13f

), 12 components

21,

2 dimensions

76.

3 dimensions

20,

4 dimensions

29.

4 dimensions

Self

5-10

Self

5-10

Self or interview

15-25

Self, or

10 min

face-to-face interview

Interview

15-20 min

Self

10-15 min

164, 2 domains, 6 categories

Self

15 min

SYMPTOM ASSESSMENT

1. Edmonton Symptom Assessment Tool (ESAS)

2. McCorkle and Young Symptom Distress Scale (SDS)

3. Rotterdam Symptom Checklist

ADL = activities of daily living. HRQoL = health-related quality of life.

9 symptoms. 100 mm visual analog scale Self, Interview

1 3 symptoms, 5 point Likert scale Self, Interview

39 symptoms, 4 constructs Self

Dyspnea During Exercise

The Borg scale asks patients to rate dyspnea perceived
after performing a physical task.^'' The Visual Analog Scale
is a line, usually 100 mm in length, with descriptors such
as "not breathless at all" and "extremely breathless" at
opposite ends of the line. Scoring of dyspnea is accom-
plished by measuring the distance from one side of the
scale (bottom or left, depending on horizontal or vertical
layout) to the level indicated by the patienL^*"

Assessment of dyspnea during exercise, though appli-
cable to patients with stable COPD, would probably not be
useful in terminal care. An analysis of the 3 dyspnea as-
sessment methods was conducted by Hajiro in 1998."* Of
interest was the finding that the Borg scale seemed to
evaluate a different aspect of dyspnea from that assessed
by other dyspnea ratings."* One possible explanation is
that the Borg .scale asks patients to score the sensation
while they are actively experiencing it instead of providing
an indirect, retrospective rating.^'

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Dyspnea Assessment

Dyspnea and Activities of Daily Living

The growth and development of pulmonary rehabilita-
tion has identified the need for a simple and standardized
method of categorizing disability in COPD.^** Clinical rat-
ing scores such as the modified MRC, Baseline Dyspnea
Index, Oxygen Cost Diagram, University of California San
Diego Shortness of Breath Scale, and the American Tho-
racic Society Shortness of Breath Scale (Table 2) allow
patients to evaluate the effect of dyspnea on ADL. The
Oxygen Cost Diagram, Baseline Dyspnea Index, and MRC
instruments are rating scales that emphasize physical ac-
tivity. The instruments consider ADL as the presumed
stimulus for dyspnea.^^

The MRC dyspnea scale lists probes ranging from "trou-
bled by shortness of breath when hurrying on the level or
walking up a slight hill" to "too breathless to leave the
house or breathless while dressing or undressing."-" The
Oxygen Cost Diagram consists of a 100 mm line with
probes describing various activities positioned along the
line according to the oxygen requirement of the specific
task.2* The Baseline Dyspnea Index is a discriminative
instrument that describes specific criteria for each of the 3
components at a single point in time.-- The American
Thoracic Society Shortness of Breath scale is very similar
to the MRC scale, but with a slightly different grading
system and a few modifications to the probes. A relative
newcomer to dyspnea assessment measures is the Univer-
sity of California San Diego Shortness of Breath Ques-
tionnaire. Revised in 1998, it is the only instrument that
evaluates dyspnea in relation to specific ADLs.^"

In assessing usefulness in palliative care, these instru-
ments do a good job when the patient is suffering from
breathlessness as a single symptom. What is perceived as
an obvious limitation of these assessment measures is their
usefulness when the patient's function is restricted by other
symptoms such as pain or fatigue. 3'

Dyspnea and Health-Related Quality of Life

Health-related quality of life might be defined as a
value assigned to duration of life as modified by im-
pairments, functional states, perceptions, and social op-
portunities, which are influenced by disease, injury, treat-
ment, or policy."

Health-related quality of life assessment scales are avail-
able in 2 forms. The generic instrument rates the impact of
a broad range of diseases on life quality. The disease-
specific instruments were designed, in a number of fields,
to target the impact of specific diseases on HRQoL. The St
George's Respiratory Questionnaire, Chronic Respiratory
Disease Questionnaire, Seattle Obstructive Lung Disease
Questionnaire, and the Pulmonary Function Status and Dys-
pnea Questionnaire were all designed to allow for com-

parisons of treatment efficacy between different types of
therapy for lung disease." Although similar in many as-
pects, each of these disease-specific questionnaires focuses
on different dimensions or components deemed to be ma-
jor concerns of patients.

The primary advantage enjoyed by the disease-specific
questionnaires is that HRQoL scales are evaluative. They
have become an established outcome measure for evalu-
ating the efficacy of therapeutic interventions, in particular
bronchodilator therapy in COPD.^^

Symptom Assessment

More applicable to the field of palliative medicine are
the symptom assessment scales. Good symptom control is
one of the most important components of delivering pal-
liative care. In order to ensure quality of care, palliative
care providers need to be able to document the effective-
ness of therapy provided for the relief of distress. ^^ Con-
tinued use of therapeutic interventions without any indi-
cation of efficacy is contradictory to the principles of
palliation. Symptom assessment scales provide a measure
to document how well or how poorly symptoms are con-
trolled.

The Edmonton Symptom Assessment Scale is a 9-item
instrument shown to be both valid and reliable in measur-
ing the intensity of symptoms. '^ One of the 9 symptoms
assessed is dyspnea. Basically the Edmonton Symptom
Assessment Scale is a 100 mm visual analog scale with
phrase anchors at each end. If the patient is unable to
complete the form, a health care provider can assist or
complete the form for the patient.

The McCorkle and Young Symptom Distress Scale also
utilizes phrases as anchors, but incorporates a 5-point Lik-
ert scale and a 13-item questionnaire to assess symptom
distress. -^5 The McCorkle and Young Symptom Distress
Scale, like the Edmonton Symptom Assessment Scale, in-
cludes dyspnea as a primary symptom to be assessed. The
Rotterdam Symptom Checklist is a patient self-report in-
strument that has 4 constructs: physical symptom distress,
psychological distress, activity level, and overall quality of
life.^"

One interesting aspect of the symptom distress assess-
ment scales has been the published research comparing
patient and caregiver responses. Kristjanson found that
family caregivers' ratings of patients' symptom distress in
a hospice home setting were highly correlated (r = 0.76,
p = 0.001) with patients' self-report of symptom distress. ^^
Cooley's research review indicated that family caregivers
tend to slightly overestimate symptom distress,^* nurses
tend to overestimate symptom distress,'-'' and physicians
consistently underrate the severity of symptom distress. ''■'*

Based on the correlation of perceived symptom distress
between patient and family caregiver, it would be reason-

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Dyspnea Assessment

able to recommend the use of a symptom assessment
tool — by both the patient and the family caregiver — at the
onset of the caregiving relationship. Early assessment of
patient-family congruence would allow health care profes-
sionals to rely more on the caregivers as a valid proxy
when the patient becomes too ill to provide symptom dis-
tress information.-''''

Communicating Versus Noncommunicating Patients
Communicating Patients

Most health care professionals would agree that it is
advisable to let the patient provide the primary informa-
tion regarding symptom distress. In palliative care, every-
thing starts with the patient, including every aspect of
symptom relief and communication.''' Not just allowing,
but relying on the patient gives him or her a sense of
control. Ideally the communication would be consistent.
Realistically, communication is dependent on many fac-
tors both internal and external to the patient. Patients who
can self-report symptoms consistently are at an advantage.
Health care providers who respond to the communication
respond to the patient's needs.

Not all symptoms are easily relieved. Dyspnea is prev-
alent in palliative care settings, common to patients with
end-stage COPD and patients with lung cancer. Some re-
search indicates that dyspnea is more refractory to treat-
ment than pain.-^' Patients can vacillate between providing
effective and ineffective communication. Many of the dys-
pnea assessment scales are designed for self-reporting or
interviewer rating. When health care professionals on dif-
ferent shifts complete the assessments, the question of
interrater reliability must surface. Effective symptom as-
sessment of a subjective sensation is difficult even under
ideal conditions.

Noncommunicating Patients

Noncommunicating patients present a challenge. A large
percentage of respiratory patients at the end of life cannot
communicate measures. Some end-stage COPD patients
end up on controlled mechanical ventilation (CMV) or
noninvasive mechanical ventilation, not always considered
a palliative.

Until recently, dyspnea in the patient on CMV was not
a focus of concern. Clinicians were intent on correcting
blood gases, adjusting ventilator settings, and providing
patient comfort by sedating if necessary. It was assumed
the ventilator would relieve breathlessness. There is now a
growing consensus that ventilator-assisted patients do ex-
perience dyspnea, and that it is the ventilator that contrib-
utes to this sensation."

The mechanical aspects of ventilation are controlled by
the central nervous system with inputs from chemorecep-
tors, baroreceptors, upper airway reflexes, and pulmonary
reflexes. The central nervous system uses these inputs to
set the ventilatory pattern that results in the best gas ex-
change for the least amount of work. Dyspnea occurs when
these relationships are suboptimal.^^ Mechanical ventila-
tion changes the norm, as the ventilatory pattern is set by
the clinician. There are other mechanisms of dyspnea in
CMV, such as decreased muscle strength, increased work
of breathing, altered gas exchange, psychosocial factors,
and environmental agents. Thus, the agitation often exhib-
ited by patients on CMV may be from respiratory acidosis,
hypoxemia, pain, or psychosis. A large component of the
agitation, however, could be from dyspnea related to poor
matching of the ventilator settings to the patient's venti-
latory needs.

Dyspnea Assessment and
Controlled Mechanical Ventilation

Assessment of dyspnea in patients on CMV requires the
use of a measurement instrument and an alert patient. Pa-
tients may not be able to verbalize, but the use of a simple
0-10 scoring technique (0 = no dyspnea, 10 = worst
dyspnea) or a visual analog scale will work if the patient
can use his or her arms, hands, nod, or blink. Patients who
are not alert or conscious enough to respond cannot be
determined to have dyspnea. Health care professionals of-
ten monitor objective measures such as pulse, respiratory
rate, oxygen saturation, use of accessory muscles, and fa-
cial expression, but these have not been found to correlate
well with patients' ratings of dyspnea. ^"^

Adjustment of ventilator settings can be done, within
boundaries, if the patient "seems dyspneic or agitated."
Regulation of flow could be potentially beneficial. Man-
ning et al investigated the effect of both low and high flow
rates with healthy individuals on CMV via mouthpiece.
Flow at both ends of the spectrum, very low and very high,
caused participants to describe sensations such as "air hun-
ger" and "chest tightness," which the authors likened to
the sensation of dyspnea."*"

Dyspnea Assessment and Nonventilated Patients

Noncommunicating patients fall into other nonventilated
categories as well. Patients who are obtunded as a result of
sedatives or a disease process, patients who are disori-
ented, or patients who suffer from cognitive decline cannot
be diagnosed as "being dyspneic." Again, objective mea-
sures do not correlate well, but in the absence of subjective
feedback, they are all that is available. Relief of other
symptoms at this point, such as pain, anxiety, or excessive
secretions, may indeed seem to relieve the "dyspnea" per-

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Dyspnea Assessment

ceived by the health care provider. If the patient and care-
giver, prior to loss of the patient's faculties, used dyspnea
assessment instruments, it is likely that congruence with
the patient's symptoms would be demonstrated. Caregiv-
ers who are willing and able could provide helpful guid-
ance in the quest for symptom relief.

Confounding Factors

Dyspnea can result from physiological, psychological,
or sociological interactions. There are numerous condi-
tions in which dyspnea is the primary complaint, for which
a single feature has yet to be elucidated.'*' Becau.se the
sensation can arise from multiple sources, both assessment
and treatment are a challenge.

Dyspnea is often concomitant with pain. Opiates, fre-
quently prescribed for pain control, are known to be re-
spiratory depressants.'' Patients with intractable pain and
dyspnea may benefit from the dual symptom control, but
in assessing symptom management it may be difficult to
determine the actual symptom control agent.

Patients who have experienced dyspnea for years may have
become desensitized to the sensation. Exposure to heightened
dyspnea in a safe environment has been theorized to increase
a patient's self-efficacy in coping with the symptom.'*^ While
this would not pose a problem in longitudinal assessment of
a single patient, it could confound the cross-sectional study of
disease-specific dyspnea.

Family dynamics can play a role in how the patient
copes with dyspnea. The physiologic symptom of dyspnea
can be exacerbated or relieved by the psychosocial dy-
namics of family members and/or close friends. This con-
founding factor in symptom assessment may be noted and
compensated for by health care professionals in acute care
settings, but in palliative care the mechanism to control
family emotion is usually lacking.

Past experience with dyspnea, particularly if it resulted
in a near-death experience, will confound the symptom
assessment/symptom control mechanism. Dyspnea is as-
sociated with a threat to life in the mind of the patient
more often than most other symptoms.''^ Any communi-
cation about a symptom will be influenced by the patient's
past experience. Once the immediate threat of death has
subsided, the sensation of dyspnea may be relieved with-
out any physiologic change in the disease state.

Ineffective therapy can lead to frustration, anger, and
anxiety in both the patient and the family member. Pallia-
tive care implies comfort. The statement "we'll do all we
can to keep you or your loved one comfortable" may be
misleading. At times, therapeutic interventions may be in-
effective. The individual with dyspnea may be further com-
promised by what is perceived to be ineffective therapy.

Summary: Assessing Dyspnea in Terminal Care

Multiple studies and surveys indicate the high preva-
lence of dyspnea with a diagnosis of end-stage COPD or
lung cancer. Measures to evaluate dyspnea and assess ef-
ficacy of treatment are needed wherever dying patients are
being cared for, be it home, hospice, or acute care. Many
assessment scales have been published, but may not be
accessible or widely distributed. Depending on the pa-
tients' functional ability, different scales would be appli-
cable.

Reassessment of dyspnea is also important to consider
as the patient's disease progresses. An acute-on-chronic
situation could lead to sudden changes in the level of
dyspnea. If assessed in a timely manner, the sensations
might be more effectively managed. Daily and as-needed
symptom assessments are recommended in palliative care.

Despite the high prevalence of dyspnea, it has not yet
attained the same status as other symptoms. When a pa-
tient during a physical exam complains of pain, much
attention is given to severity, duration, location, and asso-
ciated causality. The same has not always been true for
dyspnea. As more is learned about dyspnea, more defer-
ence should be given to the language that describes this
very subjective symptom.*"

Good palliative care requires a concerted effort on the
part of the family and health care providers to work to-
gether as a unit. The use of a simple symptom/dyspnea
assessment instrument can be a valuable starting point for
obtaining information about how to best comfort and sup-
port patients and families.''^

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2 1 . Sahebjami H, Sathianpitayakul E. Influence of body weight on the
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33. Dudgeon DJ, Harlos M, Clinch JJ. The Edmonton Symptom Assess-
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sessment of palliative care patients. J Palliat Care 1991;7:6-9.

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Mahler DA, editor. Dyspnea. New York: Marcel Dekker; 1998.

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Discussion

Sorenson: There was one other thing
that I forgot to mention. I'm not sure
whether you are the Dr Manning of
"Manning et al" who is doing all the
research on flow, where you've stud-
ied low flow vs high flow?' One of
the things we've started looking at
more and more in respiratory therapy

is flow pattern on ventilators. By look-
ing at the flow wave pattern and being
able to change the flow, even for non-
communicating patients, we may be
able to do a better job of adjusting that
flow so we're not causing dyspnea.
As I was going through my notes this
morning and you said your name was
Manning, I was even more in awe of
being in this company. The awe was
mixed with appreciation and fear,

knowing that I'm representing 1 00.000
respiratory therapists, I don't know if
I like this position or not, but, Dr Man-
ning, it was a very good research study.

REFERENCE

Manning HL. Molinary EJ, Leiter JC. Ef-
fect of inspiratory flow rate on respirato
rysensation and pattern of breathing. Am J
Respir Crit Care Med 1995;151:751-757.

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Respiratory Care • November 2000 Vol 45 No 11

Dyspnea Assessment

Tudy Giordano: In your opinion,
is there a dyspnea assessment that you
can use across the health care contin-
uum, from home care into acute care?

Sorenson: I would say probably one
of the ones associated with activities
of daily life, and not a very compli-
cated one, would probably go across
the boundaries. The health-related
quality of life assessments tend to be
a little longer and a little more com-
plex. They have more components to
them. It all depends on what it is that
you're looking to assess. Maybe the
simpler one might be the more rea-
sonable one. I think what's important
is that you start doing an assessment
early on so that you have something
to refer back to.

Tudy Giordano: You talked about
self assessments. What did you find in
your research regarding the difference
between the self assessment and the
therapist/clinician assessment?

Sorenson: The congruence is not al-
ways the same when caregivers do the
assessment versus having the patient
do the self assessment. If we can't
prove congruence (which we can't),
therapist assessments may not be as
valid.

Curtis: In fact, there's a systematic
bias such that the other's assessment
is always for less symptoms than the
patient's assessment, in the compari-
sons that have been done. So not only
is there incongruence, but it's in a wor-
risome direction in that patients' symp-
toms appear less severe in family and
health care provider assessments.

Tudy Giordano: Is there any con-
gruence between the disciplines as
well?

Sorenson: The study that I read was
between nurses, doctors, and family
caregivers.' It didn't include thera-
pists. Actually therapists haven't been
included in a lot of different things.

But that's OK: we're still going to
show up.

REFERENCE

1 . Kristjanson LJ. Nikoletti S. Porock D. Smith
M. Lobchuk M. Poller P. Congruence between
patients" and family caregiver' perceptions of
.symptom distress in patients with temiinal can-
cer. J Palliat Care 1998;14:24-32.

Levy: That was a nice presentation.
Thank you. You've identified very
nicely the difficulty of confounding
factors in the utilization of assessment
skills, especially in noncommunica-
tive patients. I find that really true at
the bedside in the critical care unit,
where the use of some of these scales
seem to fall apart when patients can't
communicate because of those con-
founding factors. Is there one partic-
ular scale that you think is better at
separating out some of those con-
founding factors?

Sorenson: Personally, I think a piece
of paper showing a scale with a zero
on one side of the page and a 10 on
the other side is effective; ask the pa-
tient to blink their eyes as you move
your hand across the scale. Ask "Can
you remember what the dyspnea felt
like two hours ago before I gave you
the medicine? Is it better or worse?"
A lot depends on the level of commu-
nication. If they're alert and can talk
to you or can blink their eyes or move
their arm or nod their head, you can
use that method. It's really tough if
they can't respond.

I think the other thing we need to
remember is that the patient needs to
be reassessed on a regular basis. We
cannot do the assessment on Monday
and go back in on Thursday and say
"Hmmm, Where are we today?" This
needs to be done every day.

Initially, with the Edmonton Symp-
tom Assessment Scale, assessments
were being done twice a day on all of
their patients to see if there was any
statistically significant difference be-
tween the morning assessment and the
evening assessment. They did this for

a period of time — I'm not sure how
long, but it was long enough that they
could get a good read on trends. They
discovered that there really wasn't any
significant difference between the morn-
ing and the evening assessment. They
did feel strongly that this still needs to
be done daily, just not twice a day.

Assessments need to be done every
day because patients can have an acute
on top of a chronic situation. This may
result in a new type of dyspnea caused
by a pleural effusion or a pneumotho-
rax or something that you might be
able to treat instead of just saying
"Well, they're dyspneic."

Heffner: Helen, a wonderful pre-
sentation. I was struck by your com-
ment that family members are the best
judges of the level of a patient's dys-
pnea and the dyspnea-relieving ther-
apy that's needed. I've had patients
who were dying in the hospital and
were receiving morphine drips through
a patient-controlled analgesia pump.
I've noticed on some occasions a so-
phisticated spouse (as happened two
days ago) will quickly learn that they
can participate in the flow of mor-
phine into their loved one's veins
through hitting the button. This is just
the inpatient counterpart of what we
do with home hospice of giving opiates
to family members and telling them to
administer it to control symptoms.

Do you think that the skill sets will
develop in respiratory therapists that
will allow them to measure the degree
of dyspnea in a dying patient and pro-
vide them with appropriate doses of
morphine to relieve their symptoms?
This would be the counterpart of fam-
ily members adjusting morphine
doses. The turnaround time to get
nurses in the room is often slow.
Maybe we ought to be looking at care-
givers from other disciplines (such as
respiratory therapists) to manage the
symptoms of suffocation of our pa-
tients at the end of life.

Sorenson: I know that our licensure
bill, our scope of practice in Nebraska,

Respiratory Care • November 2000 Vol 45 No 11

1339

Dyspnea Assessment

allows us to nebulize morphine.
There's a lot more of that going on
than the research studies indicate is
useful. Many research studies are done
on healthy people, but nebulized mor-
phine doesn't seem to affect healthy
people. It does, however, appear to
help people in terminal care.

As far as assessment skills, if you'd
asked me that question 10 years ago, I
would have said "Yes," because we
spent more time at the bedside. We
don't anymore. I don't think we spend
any more time at the bedside than the
nurses, and maybe not a whole lot more
than the doctors do. We're given a
treatment load for the day, and if we
can take care of 10 people today and
nobody dies, then we're going to get
11 people tomorrow." It's sad. When
I first started in respiratory therapy, I
had time to sit at the bedside and hold
patients' hands.

Incidentally, I was thrilled that you
were talking about spiritual issues.
There were many times when the chap-
lain and the family member came into
the room while I was there giving a
treatment. They would say "Would
you pray with us?" We would all hold
hands around the bed and the chaplain
would pray. They would thank me for
being there as a participant. I didn't
really do anything, but I was there. I
was supporting the fact that this was
an important thing for the family to
do. In today's climate, I probably would
say "I'd love to, but I have 4 more pa-
tients who need their therapy."

I don't think the respiratory thera-
pists' assessment would be much dif-
ferent from the nurses' assessment. 1
think perhaps we might also be over-
estimating their level of dyspnea. We
might panic a little and say "Let's get
something on board here — they're
pretty short of breath." I think the com-
ment you made about the family and
patient-controlled analgesia, though, is
really important.

Fins: The survey you recounted
about how family nurses and physi-
cians assess dyspnea is interesting be-

cause there was a similar study of prac-
titioners with competent patients and
assessing their pain. ' The practitioners
(and I believe it also included nurses)
on the 1 0-point analog scale underes-
timated pain.

I was wondering what you would
say about what dyspnea means to a
nurse on a floor and how that may be
anxiety-producing, whereas the phy-
sician underestimates it. What does it
say about how we view pain as a non-
crisis, and dyspnea as more of a crit-
ical event, and about the sociology of
how we structure care teams and com-
municate?

REFERENCE

1. Drayer RA, Henderson J, Reidenberg M.
Barriers to better pain control in hospital-
ized patients. J Pain Symptom Manage 1 999;
17:434-440.

Sorenson: Historically, we have
been more concerned about pain.
When a patient comes into a physi-
cian's office and says "I'm in pain"
we want to know intensity, we want
to know duration, we want to know
where the pain is, and we want to know
how long the pain has been there.
There's a whole lot more credence
given to the fact that the patient is in
pain. If the patient comes in and says
"I'm dyspneic, I'm short of breath"
our response may be "Oh, that's too
bad. When did it start?" I think we
pay a little bit of attention, but maybe
not as much as we should.

I'm not sure how to answer your
question exactly, other than to say that
when a patient says they're dyspneic,
as respiratory care providers we want
to fix it and we want to fix it now. If
they can't tell us they're dyspneic, we
think we know what their level of dys-
pnea is. This is a terrible thing to say,
but it might also be a factor of "1 don't
have time to deal with that now, so I'll
come back later and see if you're still
dyspneic and if you're still dyspneic
when I come back, then I'll think about
what to do about it." Did that come close
to answering your question?

Fins: I was just struck by the fact
that physicians underestimate pain in
this particular study of inpatients, com-
pared to the interview of the patient.
And the nurses did the same. But in
your study, nurses overestimated,
which would seem to indicate to me
that dyspnea is a critical event that
mobilizes people, that's distinct, per-
haps, from pain, and that dyspnea is
perceived as an emergency or immi-
nent crisis, whereas pain sometimes
can be left to linger. But 1 think it is
interesting that there are these discor-
dant issues in pain and dyspnea that
often go hand in hand. I think it sug-
gests that we need to do a study that
looks at pain and dyspnea together to
see how clinicians assess it, because I
think it might lead to some specula-
tion about how we view these symp-
toms that are so prevalent at the end
of life.

Sorenson: Because pain is one of
the causes of dyspnea, if you look at
the big picture.

Manning: You reviewed a number
of dyspnea assessment scales, all of
which involve quantitating dyspnea.
Many were designed for research stud-
ies, and I wonder if in the clinical set-
ting it's always important to have pre-
cise quantitation of the patient's
dyspnea or whether something sim-
pler might be used. Sometimes just
offering the patient a choice about his
ventilator settings may be more useful
than measuring the patient's dyspnea.
For example, for a patient undergo-
ing noninvasive ventilation you might
ask which is more comfortable: this
higher flow rate or this lower flow
rate? Do you like pressure control or
do you like pressure support? Do you
like the full face mask or a partial face
mask? So rather than feeling a need to
always quantitate dyspnea, which I
think is important in a research study,
I wonder whether in many clinical set-
tings if it's better just to inquire about
the presence or absence of dyspnea
and offer the patient a choice: Does

1340

Respiratory Care • November 2000 Vol 45 No 1 1

Dyspnea Assessment

this feel better? Does that feel better?
Which do you prefer?

Sorenson: I think that's an excel-
lent point. At the bedside, an evalua-
tion of more versus less is probably
the most reasonable thing we can do
for the patient: does this feel better or
does this feel worse than what I did
before? Particularly when you're seek-
ing the patient's feedback and they
are able to respond. Dyspnea is a sen-
sation that we're trying to assign num-
bers to, and that's very difficult.

Fins: I think there are a lot of pa-
tients who are not mathematically or
quantitatively inclined. I think trans-
lating their symptom sensation to a
number on different occasions — I
don't know whether that really helps
evaluate and treat their dyspnea in all
clinical settings.

Sorenson: Actually, I think that was
one of the reasons why the visual an-
alog scale was developed with the Borg
dyspnea scale. You might have 3 peo-
ple riding exercise bikes next to each
other and comparing numbers: "Well,
my dyspnea was a 6, what was yours?"
"Well, mine was a 7." It can get a
little competitive. With the visual an-
alog scale, patients don't see any num-
bers. They're just selecting a level
from "no distress" to "the very most
distress I could have." The therapist
or the clinician can see the numbers
on the back and can score it for them.
I think in a clinical setting, if you're
just looking at evaluating at bedside,
the "more versus less" technique is
probably the best assessment. It's im-
portant to assess dyspnea, that there is
an awareness that this is something
that the patient can tell us. However, I
don't think I would want to go to a
patient on mechanical ventilation with
a clipboard and pen in hand and say
"Now, I'm going to ask you questions
for 10 minutes and I want you to tap
once for 'yes' and tap twice for 'no'."
I just don't think I'd go there in an

intensive care setting. I don't know in
palliative care.

Hansen-FIaschen: The develop-
ment in the last few years of well stud-
ied and validated techniques for mea-
suring dyspnea and health-related
quality of life provides an interesting
new opportunity for pulmonary func-
tion laboratories to add a panel of these
measures into the routine physiologic
studies that we do. Thus, an ordering
physician might check off a dyspnea
scale and St George's Respiratory
Questionnaire and an "SF-36" [short
form 36-question health survey. Med-
ical Outcomes Trust, Boston, Massa-
chusetts] in addition to the other stud-
ies that are done there. The results
could be displayed and interpreted in
reports that also include conventional
psychological measurements. The big
obstacle at the moment is getting paid
for that, and it may be the overwhelm-
ing obstacle, but I really hope that we'll
begin to see a translation of these re-
search techniques into routine clinical
tools. Pulmonary function test labs
staffed by respiratory therapists might
be one way to do that.

Sorenson: I think that's an excel-
lent point, particularly since studies
have shown that forced expiratory
volume in the first second and dys-
pnea correlate weakly. '^ You can-
not just look at an FEV, [measure-
ment of forced expiratory volume in
the first second] and say "Oh, well,
it's less than 35%, of course they're dys-
pneic!"

Another interesting study that I for-
got to mention was the one that re-
lated body mass index to shortness of
breath. 3 They found overwhelmingly
that people who had a higher body
weight were less dyspneic, and people
who had a lower body weight were more
dysgenic — which goes back to what
we've pretty much always known, that
the pink puffers were more dysgenic
than the blue bloaters. We just needed a
research study to tell us that.

REFERENCES

1 . Eltayara L, Becklake MR, Volta CA, Milic-
Emili J. Relationship between chronic dys-
pnea and expiratory flow limitation in pa-
tients with chronic obstructive pulmonary
disease. Am J Respir Crit Care Med 1996;
154:1726-1734.

2. Mahler DA, Wells CK. Evaluation of clini-
cal methods for rating dyspnea. Chest 1988;
93:580-586.

3. Sahebjami H, Sathianpitayakul E. Influence
of body weight on the severity of dyspnea in
chronic obstructive pulmonary disease. Am J
Respir Crit Care Med 2000;161:886-890.

Curtis: I think it's a great idea, but
the other obstacle to that is that these
measures have never been shown to
be clinically useful. There haven't been
a lot of studies, but there have been a
couple of randomized, controlled trials
trying to feed these measures back to
clinicians that have been negative so far,
and there are more underway.' But I
think we need to do the research to show
that in fact collecting this information is
going to make a difference in the care
of patients.

REFERENCE

1. Espallargues M, Valderas JM, Alonso J.
Provision of feedback on perceived health
status to health care professionals: a sys-
tematic review of its impact. Med Care 2000;
38:175-186.

Hansen-Flaschen: My suggestion is
that the pulmonary function test labs
might be the home for initiating that
research and subsequently offer the ac-
tual clinical applications validated by
the research.

Sorenson: Then I would think it
might be the responsibility of educa-
tors to talk to the people who are do-
ing pulmonary function tests. I visited
with a pulmonary function technolo-
gist in the hospital one day and asked
"What kind of dyspnea assessment
scales do you have that you run your
patients through?" She replied "the
Borg: Is there any other?" She was
not aware that there were. So that's a
very good point.

Respiratory Care • November 2000 Vol 45 No 11

1341

Dyspnea Treatment

Harold L Manning MD

Introduction
Mechanisms of Dyspnea

Sense of Respiratory Effort

Chemoreceptor Stimulation

Chest Wall Receptors

Lung Receptors

Integration of Sensory Information
Drug Therapy of Dyspnea

Opiates

Nebulized Opiates

Anxiolytics and Other Psychoactive Drugs
Nonpharmacologic Treatment

Air

Transfusion

Chest Wall Vibration

Vagotomy
Alternative Medicine

Acupuncture

Acupressure

Herbal Medicine
Summary

[Respir Care 2000;45(11):1342-1351] Key words: dyspnea, chronic obstruc-
tive pulmonary disease, COPD, lung cancer, palliative care, acupuncture, chest
wall vibration, benzodiazepines.

Introduction

Dyspnea can be managed by focusing on the underlying
cause of the symptom or the symptom itself. Since the
topic of this conference is palliative respiratory care, I
discuss treatments aimed at the symptom of dyspnea rather
than the underlying disease process. Several a.spects of
dyspnea treatment are discussed elsewhere in this confer-

ence and will not be reviewed here. Herein I focus on
drugs used in the treatment of dyspnea, as well as on
selected aspects of nonpharmacologic management. I first
briefly review the pathophysiology of dyspnea, which pro-
vides a useful framework for approaching the treatment of
dyspnea.

Mechanisms of Dyspnea

Harold L Manning MD is affiliated with the Pulmonary Section, Dart-
mouth-Hitchcock Medical Center, Lebanon, New Hampshire.

A version of this paper was presented by Dr Manning during the Respi-
ratory Care Journal Conference, Palliative Respiratory Care, held May
19-21, 2000 in Canciin, Mexico.

Correspondence: Harold L Manning MD, Pulmonary Section, Dart-
mouth-Hitchcock Medical Center, Lebanon NH OZlib. E-mail:
harold.l.manning@hitchcock.org.

The term dyspnea subsumes a number of qualitatively
distinct sensations.' It is likely that these qualitative dif-
ferences in sensation reflect differences in the underlying
pathophysiological mechanism. In the future, identifica-
tion of the mechanism(s) of dyspnea in an individual pa-
tient may lead to disease-specific treatment of symptoms;
that is, in addition to treatment aimed at the underlying
disorder, there is the potential to aim palliative care at the
underlying mechanism of dyspnea.

1342

Respiratory Care • November 2000 Vol 45 No 1 1

Dyspnea Treatment

Sense of Respiratory Effort

The sense of muscular effort refers to conscious aware-
ness of voluntary activation of skeletal muscles. We are all
familiar with the sense of muscular effort: a heavy object
requires great effort to move, whereas little effort is needed
to move a light object. What feels "heavy" or "light" de-
pends not only on the weight of the object but also on
one's strength. Similarly, the sense of respiratory muscle
effort is related to the ratio of the pressure generated by the
respiratory muscles to the maximum pressure generating
capacity of the muscles; that is, Pbreati/Pimax" Thus, the
sense of effort will increase whenever the inspiratory mus-
cles must generate greater pressure, such as when they
face an added elastic, resistive, or threshold load, or when
the pressure generating capacity of the respiratory muscles
is reduced, such as when the muscles are weakened, fa-
tigued, or mechanically disadvantaged by an increase in
lung volume.

Lung Receptors

The lung contains a variety of receptors that transmit
information to the central nervous system: pulmonary
stretch receptors in the airways respond to lung inflation;
irritant receptors in the airway epithelium respond to a
variety of mechanical and chemical stimuli and mediate
bronchoconstriction; and C-fibers (unmyelinated nerve
endings) located in the alveolar wall and blood vessels
respond to interstitial congestion. Information from these
vagal receptors may also play a role in dyspnea.

Integration of Sensory Information

The various sensory (neural) inputs are processed by the
cortex and ultimately give rise to the sensation of dyspnea.
Hence, treatment of dyspnea could be aimed at altering the
activity of receptors that contribute to the sensation of
dyspnea, or at the cortical processing of afferent informa-
tion arising from those receptors.

Chemoreceptor Stimulation

Stimulation of the central and peripheral chemorecep-
tors increases ventilation. These same receptors also con-
tribute to the sensation of breathlessness.'"* For example,
patients with pulmonary disease experience breathlessness
while breathing carbon dioxide.'* However, the clinical rel-
evance of such experimental observations is uncertain be-
cause there are many clinical settings, such as in interstitial
lung disease, in which hypercapnia is rare, yet such pa-
tients often experience significant breathlessness. Con-
versely, many patients with chronic obstructive pulmonary
disease (COPD) and hypercapnia experience little or no
dyspnea at rest, possibly because their chronic hypercap-
nia is associated with metabolic compensation.

Hypoxia stimulates respiration through its effects on the
peripheral chemoreceptors and, like carbon dioxide, hyp-
oxia may cause or contribute to the sensation of breath-
lessness. However, just as with hypercapnia. many dys-
pneic patients are not hypoxic, and those who are hypoxic
often have only modest improvement in their symptoms
after the hypoxia is corrected.

Chest Wall Receptors

The brain receives projections from a variety of recep-
tors in the joints, tendons, and muscles of the chest wall,
which influence ventilation and affect the sensation of
breathlessness. Mechanical stimuli, such as vibration, are
known to activate these receptors, and may affect the sen-
sation of breathlessness.

Drug Therapy of Dyspnea

The ideal pharmacologic agent would alleviate breath-
lessness without adverse effects such as worsening gas
exchange or causing depressed mental status. Stark et al
described two general patterns of drug effect on breath-
lessness: a type I effect, in which ventilation and breath-
lessness are both decreased, and a type II effect, in which
ventilation is unchanged but breathlessness decreases.* A
type I effect, in which ventilation decreases, may be as-
sociated with worsening hypoxia and hypercapnia. Wors-
ening gas exchange is usually not a primary concern in the
dying patient, but may be of concern in patients who are
not in the terminal phase of their illness.

Opiates

There have been 7 randomized, controlled trials of opi-
ates in COPD. Although most of the patients in these
studies suffered from severe COPD, the studies generally
excluded patients with significant hypercapnia or hypoxia.
As shown in Table 1, the studies differ in several respects,
including the specific opiate used and the duration of treat-
ment. Nonetheless, some themes emerge from these stud-
ies. First, opiates administered as a single dose reduce
breathlessness, though the beneficial effect on dyspnea
may be offset by adverse effects.^' ' The reduction in breath-
lessness appears to be caused by both a reduction in ven-
tilation (type 1 effect) and a direct effect on breathlessness
(type II effect); that is, at a given level of ventilation,
breathlessness is decreased. Over a longer time frame,
ranging from 1-6 weeks, the results are less clear cut, with
some authors reporting a reduction in breathlessness,^' but

Respiratory Care • November 2000 Vol 45 No 1 1

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Dyspnea Treatment

Table 1. Controlled Trials of Opiates in COPD

Author (year)

Drug

Duration of
Treatment

Effect of Treatment

Woodcock etal (\9S\y

Dihydrocodeine (oral)

Single dose

Increased exercise tolerance

Decreased breathlessness

Decreased rest and exercise ventilation

Bar-Oretal (1982)»*

Johnson etal (1983)"

Dihydrocodeine (oral)

2wk

1 wk

Increased exercise tolerance
Decreased rest and exercise ventilation
Slight rise in P^q,
Frequent Gl side effects

Increased exercise tolerance
Decreased breathlessness

Riceetal(1987)i«

Codeine (oral)

1 mo

Dyspnea and exercise tolerance

unchanged

f C02 increased by mean of 4-5 mm Hg

Drowsiness common

Light et al (1989)'

Morphine (oral)

Single dose

Increased exercise tolerance

Decreased dyspnea

Decreased ventilatory response to

exercise

Drowsiness common

Eiseret al (199l)'2

Diamorphine (oral)

2 wk

Dyspnea and exercise tolerance

unchanged

Gl side effects

Poole etal (1998)"

Morphine (sustained-release)

6 wk

Dyspnea unchanged

6-MW distance decreased

Gl side effects, drowsiness common

*Published only as a letter to the editor. COPD = chronic obstructive pulmonary disease. Pco-> - partial pressure of carbon dioxide. Gl = gastrointestinal. 6-MW - 6-minute walk.

Others finding no effect of opiates on breathlessness. 'O'^'-'
Gastrointestinal adverse effects are common and often trou-
blesome to patients. Long-term treatment (weeks) with
opiates is likely to induce a modest rise in partial pressure
of carbon dioxide even in nonhypercapnic patients: the
magnitude of the rise is uncertain in patients with COPD
and baseline hypercapnia.

Opiates have also been used to treat dyspnea in patients
with either primary lung cancer or pulmonary metastases
from another primary site of tumor. In several uncon-
trolled studies, subcutaneous''*''' and oral opiates'''"' sig-
nificantly reduced dyspnea in patients with advanced can-
cer, many of whom were already receiving opiates for
pain. Some patients in these studies experienced adverse
effects such as drowsiness, dizziness, and nausea. In a
placebo-controlled, crossover study, Bruera administered
subcutaneous morphine to 10 patients with terminal cancer
who were already receiving intermittent morphine for pain
control. '^ The mean daily dose of morphine was 34 mg.

which represented a 50% increase over the patients' regularly
scheduled dose. Compared to placebo, morphine produced
significant improvement in dyspnea (Fig. 1), without a sig-
nificant change in respiratory rate or oxygen saturation.

Nebulized Opiates

Opiates have generally been assumed to alter breath-
lessness through their effects on the central nervous sys-
tem, either by reducing respiratory drive or by altering the
cortical processing of respiratory-related afferent informa-
tion. However, opiate receptors have also been identified
in the bronchial mucosa,"* raising the possibility that the
effects of opiates on dyspnea might, in part, be mediated
by peripheral opiate receptors. If that were true, dyspnea
might be amenable to treatment with lower do.ses of opi-
ates applied "topically," in much the same way that in-
haled steroids improve asthma .symptoms with far fewer
adverse effects than systemic corticosteroids. In a random-

1344

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Dyspnea Treatment

CO
<
>

■ Morphine
D Placebo

Baseline

30min

45 min

60 min

Fig. 1. Effect of subcutaneous morphine on dyspnea in patients
with terminal cancer. VAS = visual analog scale. (Adapted from
Reference 17.)

ized, placebo-controlled study of 1 1 patients with advanced
COPD or idiopathic pulmonary fibrosis, Young et al com-
pared the effects of 5 mg of nebulized morphine and an
identical volume of nebulized saline on exercise endur-
ance. '■* The investigators found a significantly greater in-
crease in endurance time with nebulized morphine than
with the inhaled placebo (Fig. 2). In this study, the mean
nebulized dose of morphine was 1.7 mg, which, according
to the authors' calculations, resulted in a mean inhaled
dose of only 0.6 mg. Although some of the nebulized
morphine may have been systemically absorbed, the au-
thors suggested that, given the small dose of morphine
delivered to the patient, the effects of morphine on breath-
lessness were more likely due to a peripheral (bronchial)
rather than central mechanism of action.

Since the initial study by Young et al, there have been
4 additional placebo-controlled trials of nebulized mor-
phine in COPD patients.20-2^ Although the studies differed
in experimental design, all used doses of nebulized mor-

300

250

w. 200

150

■ Morphine
n Placebo

100

Baseline

Treatment

Fig. 2. Effect of nebulized morphine on exercise endurance in
patients with chronic respiratory disease. (Adapted from Refer-
ence 19.)

phine equal to or greater than that used by Young et al.
However, none of the studies found any effect of nebu-
lized morphine on breathlessness or exercise tolerance.
Recently, Zeppetella studied the effect of nebulized mor-
phine on dyspnea in 17 terminally ill cancer patients, many
of whom were already receiving oral opiates, and all of
whom had dyspnea at rest or on exertion.-'' In this study,
a dose of 20 mg of morphine was nebulized every 4 hours.
Twenty-four hours after the start of the nebulized mor-
phine, 16 of the patients (94%) reported significantly less
dyspnea, and many had persistent improvement at 48 hours.
Unfortunately, the findings of this study are tainted by the
lack of a control group.

In summary, there is still uncertainty about the proper
role of opiates in the management of dyspnea. When given
in a single dose, opiates improve breathlessness, but there
are conflicting reports about the long-term effects of opi-
ates on dyspnea in COPD. Many COPD patients experi-
ence bothersome adverse effects that may offset and even
outweigh any beneficial effects of treatment on breathless-
ness, and almost all of the studies to date have excluded
patients with significant hypercapnia or hypoxia. There-
fore, in non-terminally-ill patients with intractable breath-
lessness, the issue may best be settled by a therapeutic trial
in which the clinician weighs both the beneficial and the
adverse effects in the individual patient. However, in ter-
minally ill cancer patients, both clinical studies and abun-
dant clinical experience indicate that opiates reduce breath-
lessness, even in patients already receiving opiates for the
treatment of pain (this probably also applies to patients
terminally ill from nonmalignant disorders). Despite the
encouraging initial report by Young et al''' several subse-
quent studies have been unable to replicate their results,
and the bulk of evidence indicates that inhaled morphine
has no effect on breathlessness in COPD patients. There
have been no controlled trials of nebulized morphine in
cancer patients, and thus there is insufficient evidence upon
which to base a recommendation. However, given doubts
about the efficacy of the inhaled route, in my view, opiates
should be delivered to terminally ill patients by either an
oral, subcutaneous, or intravenous route. There have been
no comparative studies of the ability of different types of
opiates to relieve dyspnea, but it seems likely that at equi-
potent doses, the various opiates provide equivalent relief
of dyspnea.

Anxiolytics and Other Psychoactive Drugs

Anxiolytics. Many patients with dyspnea also experi-
ence anxiety. It is widely believed (though not proven) that
anxiety heightens the sense of dyspnea, so that, in theory,
an agent that relieves anxiety might also alleviate dyspnea.
In the first systematic study of the effect of benzodiaz-
epines on dyspnea, Mitchell-Heggs et al--'' reported that

Respiratory Care • November 2000 Vol 45 No 11

1345

Dyspnea Treatment

c
ca

n
S

c
'E

600-

400

200

Placebo

Buspirone

Fig. 3. Effect of buspirone on 6-minute walk distance in ctironic
obstructive pulmonary disease (COPD) patients. Ttiere was a sta-
tistically significant effect of buspirone, but the magnitude of the
effect was extremely small. (Adapted from Reference 30.)

diazepam at a daily dose of 25 mg caused a "striking
reduction in dyspnea" and improved exercise tolerance in
4 patients with disabling breathlessness secondary to
COPD. However, there were no objective measurements
of dyspnea, and the investigators were not blinded to the
treatment. Although a subsequent uncontrolled trial also
reported a reduction in breathlessness with alprazolam.^*
controlled trials of diazepam,^^ clorazepate,^^ and alpra-
zolam-' have shown no reduction in breathlessness in
COPD patients.

Buspirone is a nonbenzodiazepine anxiolytic that ap-
pears not to depress respiration. In a randomized, placebo-
controlled study in 16 COPD patients, Argyropoulou et al
reported that buspirone administered 3 times daily over a
period of 1 5 days caused a significant increase in exercise
tolerance.'" However, the magnitude of the effect was quite
small (Fig. 3) and of questionable clinical importance.
Thus, the available data suggest that benzodiazepines and
other anxiolytics have little or no effect on breathlessness
in COpD. It remains to be seen whether anxiolytics reduce
breathlessness in other pulmonary disorders, or whether
they have a role in treating a subset of patients in whom
breathlessness is accompanied by a substantial component
of anxiety.

Phenothiazines. There have been only two controlled
trials of the effect of phenothiazines on breathlessness in
patients with lung disease. Woodcock et al reported that in
18 patients with severe COPD, promethazine significantly
reduced breathlessness and improved exercise tolerance.-^
However, the magnitude of the effect was quite small: the
12-minute walking distance increased by 32 meters, an
increase of 4.7%, and the dyspnea grade decreased by a
mean of 0.7. In several of the patients, treatment with
promethazine was accompanied by drowsiness. In a fol-
low-up study. Rice et al found no effect of a similar dose
of promethazine on exercise tolerance or breathlessness

ratings.'" Some of these patients also experienced substan-
tial drowsiness. Thus, although there are scant data upon
which to base a recommendation, the available literature
suggests that, at best, phenothiazines cause very slight
improvement in breathlessness and may cause adverse ef-
fects that some patients find objectionable.

Anti-depressants. Many patients with chronic illnesses
experience depression, which may interact with the pa-
tient's underlying medical condition. In a randomized, con-
trolled trial in 30 patients with coexistent COPD and de-
pression, Borson et al found that the antidepressant
nortriptyline caused a marked improvement in mood, but
had no effect on dyspnea during daily activities or exer-
cise."" In a case series of 7 patients with various respira-
tory disorders, treatment with sertraline improved breath-
lessness, at times "markedly. "'^ However, it is impossible
to draw conclusions on the basis of this small, uncon-
trolled study that lacked objective measurements of dys-
pnea. Hence, to date, there is no convincing evidence that
anti-depressants alleviate breathlessness, and the role of
these agents remains undefined.

Miscellaneous. There are a number of dyspnea treat-
ment strategies for which a therapeutic rationale exists, but
for which evidence of efficacy is lacking (Table 2). Many
of these treatments are derived from experimental models
of dyspnea in normal subjects. In some cases, the treat-
ment has yet to be tested in patients with lung disease,
whereas in others, clinical studies have not shown benefit.
It is uncertain whether there are specific patient popula-
tions that can be identified that might benefit from one or
more of these treatments.

Nonpharmacologic Treatment

Air

Oxygen is widely used in the treatment of dyspnea.
However, air alone may improve symptoms in some pa-
tients. Anecdotally, some patients report relief of dyspnea
when sitting by a fan or open window. Spence et al found
that in COPD patients, exercise tolerance increased and
dyspnea decreased when patients breathed cold air.-*" Since
it is a simple, inexpensive, and essentially risk-free treat-
ment, a fan should be readily available to patients who
request or report benefit from it.

Transfusion

Although anemia is widely recognized as a cause of
exertional dyspnea and decreased exercise capacity, to the
best of my knowledge, only a single study has examined
the effect of blood transfusion on dyspnea in patients with

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Table 2. Miscellaneous Agents Used in the Treatment of Dyspnea

Treatment

Rationale

Author (year)

Study Population

Effect of Treatment

Indomethacin

May decrease
dyspnea in normals
during exercise

O'Neill et al (1986)" ILD

Schiffman et al (1988)'" COPD

Dextromethorphan

Codeine analog
lacking usual opiate
side effects

Giron et al (1991)"

COPD

Sodium bicarbonate

Reduction in

Taguchi et al (1996)3'

Normal subjects

respiratory drive

breathing with

may decrease

resistive load

dyspnea

Inhaled lidocaine

Vagal receptors

Stark etal (1985)"

COPD/ILD

Inhaled bupivicaine

contribute to

Winning etal (1988)38

ILD

Inhaled lidocaine

breathlessness

Wilcocketal (1994)3''

Cancer

ILD = interstitial lung disease. COPD = chronic obstructive pulmonary disease.

No effect on dyspnea or exercise
capacity

Decreased ventilation and dyspnea

No effect on dyspnea or exercise

capacity

Trend toward increased dyspnea

Possible increase in breathlessness

lung disease. In an uncontrolled study conducted in a pal-
liative care unit, Gleeson et al assessed symptoms before
and after transfusion."" There was significant improve-
ment in visual analog scale (VAS) dyspnea ratings after
transfusion, particularly in patients in whom breathless-
ness was an indication for transfusion, and the improve-
ment persisted for up to 14 days after transfusion. Unfor-
tunately, this study suffers from the limitations of all
uncontrolled studies.

Chest Wall Vibration

Sibuya et a! examined the effects of chest wall vibration
on rest dyspnea in 15 patients with severe chronic respi-
ratory disease.''- The investigators found that the effects of
chest wall vibration depended on the timing of the vibra-
tory stimulus. When vibration was delivered "in-phase"
with respiration (ie, vibration of the inspiratory intercos-
tals during inspiration and expiratory intercostals during
expiration), breathlessness decreased, whereas breathless-
ness increased with "out-of-phase" vibration (ie, vibration
of the expiratory intercostals during inspiration and in-
spiratory intercostals during expiration). There have been
conflicting findings with regard to exertional dyspnea: Cris-
tiano and Schwartzstein found no effect of chest wall vi-
bration on exertional dyspnea in COPD patients,-" but Na-
kayama et al found that chest wall vibration reduced
dyspnea during upper extremity exercise in COPD pa-
tients.-" Thus, it remains to be seen whether chest wall

vibration can be applied in a practical way that provides
clinically meaningful relief of breathlessness.

Vagotomy

Vagal receptors are important in the control of breathing
and the pathogenesis of dyspnea, suggesting that interrup-
tion of vagal traffic might alleviate the sensation of breath-
lessness. In an uncontrolled study, Guz et al reported marked
improvement in dyspnea following vagal block in two
patients with severe rest dyspnea (one of whom had pul-
monary vascular disease and the other lymphangitic car-
cinomatosis). •'^ In another uncontrolled case report, a
woman with lung cancer experienced "unequivocal relief
of her dyspnea after vagal nerve block."*^ More recently,
Davies et al described a woman with severe exertional
dyspnea caused by unilateral pulmonary venous obstruc-
tion.-*' After ipsilateral vagotomy, the patient experienced
an increase in exercise capacity and complete resolution of
her exertional dyspnea. However, because of the small
number of patients, the lack of any controlled studies, and
the invasive nature of the procedure, vagotomy cannot be
recommended at this time.

Alternative Medicine

Acupuncture

Acupuncture is thought to cause release of endogenous
opiates. Since dyspnea may be relieved by the administra-

Respiratory Care • November 2000 Vol 45 No 11

1347

Dyspnea Treatment

♦ - - Placebo
-■ — Traditional

Baseline

3 weeks

"E
I

400

300

200

100-

♦ - - Placebo
Hi — Traditional

Baseline

■+-

3 weeks

Fig. 4. Effect of acupuncture on breathlessness (top panel) and
6-minute walk distance in chronic obstructive pulmonary disease
(COPD) patients (bottom panel). Although both traditional and sham
acupuncture were associated with improvement in symptoms and
exercise capacity, there was significantly greater improvement in
the traditional acupuncture group. (Adapted from Reference 48.)

tion of opiates, it is reasonable to wonder whether acu-
puncture might confer similar benefit. Jobst et al compared
the effects of "traditional" and "placebo" acupuncture in
patients with COPD and "disabling breathlessness.""^ In
the patients receiving traditional acupuncture, the acupunc-
ture needles were inserted into acupuncture points "ac-
cording to the principles of traditional Chinese medicine,"
whereas in the placebo acupuncture group, needles were
inserted into nonacupuncture "dead points" (over the pa-
tella). The treatments were administered on 13 occasions
over a period of 3 weeks. For the purpose of data analysis,
each patient from the traditional acupuncture group was
paired with a patient from the placebo group whose age,
sex, severity of breathlessness, and lung function were
matched as closely as possible. The authors found that,
compared to the placebo group, the traditional acupuncture
group experienced greater improvement in symptoms and
distance walked in 6 minutes (Fig. 4). However, because
of the small number of patients (only 1 2 patient pairs were
analyzed) and suboptimal study design (lack of crossover
arm), it is impossible to draw firm conclusions from this
study.

■S 30

20-

10-

— • — Dyspnea
--•- Resp Rate

- ■ * ■ - Anxiety

- •- ■ Relaxation

Pre 10' 15' 30' 60' 90'

Time after start of acupuncture

Fig. 5. Effect of acupuncture in cancer patients. There were prompt
and significant improvements in dyspnea, relaxation, and anxiety.
VAS = visual analog scale. (Adapted from Reference 49.)

Filshie et al examined the effects of acupuncture in 20
patients with cancer-related breathlessness.'** In each pa-
tient, 4 fine needles (two in the upper sternum and one in
each hand) were placed by an experienced acupuncturist.
The needles were left in place for 10 minutes and then
removed. A nurse observer remained with the patient for
the first 90 minutes of the study. VAS measurements of
breathlessness, anxiety, pain, and relaxation were made
prior to insertion of the needles and repeated at several
intervals over the ensuing 24 hours. As shown in Figure 5,
there were significant improvements in breathlessness, anx-
iety, and relaxation; these improvements were maintained
for at least 6 hours. Fourteen of the 20 patients reported
"marked symptomatic relief following acupuncture." Un-
fortunately, this was an uncontrolled study, and it is pos-
sible that the marked relief of symptoms was caused by
either the reassuring presence of the nurse or a nonspecific
"placebo effect."

Acupressure

Acupressure is a therapy in which gentle finger pressure
is applied at specific "acupoints" on the body. Maa et al
studied whether the addition of acupressure to a standard
pulmonary rehabilitation program would reduce dyspnea.^"
In this study, 31 COPD patients were taught to apply
pressure to 7 acupoints that are believed to "give maxi-
mum relief to patients with dyspnea, to restore energy, or
to enhance immune system function." The subjects were
told to perform the technique at least once per day, but
subjects also had the option to perform it as many addi-
tional times as they wanted. As a control, subjects applied
"sham" acupressure to 7 points that were not documented
to be true acupoints. The main outcome measures in the
study were dyspnea (assessed by VAS, Borg Scale, and
Bronchitis-Emphysema Symptom Checklist) and 6-minute
walking distance. The investigators found that VAS rat-
ings of breathlessness were significantly lower for real

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Dyspnea Treatment

100
80
60
40-
20-

10'

ll ■ ■

Baseline Acupressure

Sham

111!

Baseline Acupressure

Sham

Herbal Medicine

Although there are many anecdotal reports of the ben-
eficial effects of herbs and nutritional supplements on
breathlessness, there is virtually nothing published in the
medical literature. I did a MEDLINE search using "alter-
native medicine," "herbal medicine," "minerals," "vita-
mins," and "dietary supplements" as subject headings and
key words, and found only a single reference that inter-
sected with the subject headings and key words "breath-
lessness" or "dyspnea." That reference was a population-
based study of the effect of a-tocopherol and /3-carotene
on the prevalence of symptoms such as dyspnea (the in-
vestigators found no effect); the study did not examine the
effect of either substance on the intensity of symptoms in
individuals.^' Thus, to the best of my knowledge, there is
to date no scientific evidence that vitamin or mineral sup-
plementation, herbal preparations, or any other form of alter-
native medicine (with the possible exception of acupuncture)
reduces breathlessness in patients with lung disease.

Summary

c
S

400

8 300

c
E

200

100

Baseline

Acupressure

Sham

Fig. 6. Effect of acupressure on breathlessness In chronic obstruc-
tive pulmonary disease (COPD) patients. Real acupressure caused
significantly greater Improvement In visual analog scale (VAS) rat-
ings of breathlessness (top panel), but there was no significant
difference between "real" and "sham" acupressure In Borg Scale
ratings of breathlessness (middle panel) or 6-mlnute walk distance
(bottom panel). (Adapted from Reference 50.)

than for sham acupressure, but there was no significant
difference between traditional and sham acupressure in the
other measures of dyspnea or 6-minute walking distance
(Fig. 6).

In summary, there are few published studies of the ef-
fects of acupuncture or acupressure on breathlessness.
Those studies that have been performed have been meth-
odologically flawed or have shown only slight improve-
ment in symptoms, compared with placebo. Further stud-
ies are necessary to define the role of acupuncture in the
treatment of breathlessness.

There is a pressing need for more effective treatment of
dyspnea. Although many drugs have been examined, only
opiates are of any documented efficacy, and their use is
complicated by concern about adverse effects, particularly
in patients in whom death is not imminent. A variety of
nonpharmacologic strategies have been studied, but most
of these have been the subject of only a few, often meth-
odologically flawed studies that enrolled small numbers of
patients. When beneficial effects have been demonstrated, the
magnitude of the improvement has generally been small and
difficult to distinguish from a placebo effect.

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25. Mitchell-Heggs P, Murphy K, Minty K, Guz A, Patterson SC, Minty
PS. Rosser RM. Diazepam in the treatment of dyspnoea in the 'Pink
Puffer' syndrome. Q J Med 1980;49:9-20.

26. Greene JG, Pucino F, Carlson JD, Storsved M, Strommen GL. Ef-
fects of alprazolam on respiratory drive, anxiety, and dyspnea in
chronic airflow obstruction: a case study. Pharmacotherapy 1989;9:
34-38.

27. Woodcock AA, Gross ER, Geddes DM. Drug treatment of breath-
lessness: contrasting effects of diazepam and promethazine in pink
puffers. Br Med J (Clin Res Ed) 1981;283:343-346.

28. Eimer M, Cable T, Gal P, Rothenberger LA, McCue JD. Effects of
clorazepate on breathlessness and exercise tolerance in patients with
chronic airflow obstruction. J Fam Pract 1985;21:359-362.

29. Man GC. Hsu K, Sproule BJ. Effect of alprazolam on exercise and
dyspnea in patients with chronic obstructive pulmonary disease. Chest
1986;90:832-836.

30. Argyropoulou P, Patakas D, Koukou A, Vasiliadis P, Georgopoulos

D. Buspirone effect on breathlessness and exercise performance in
patients with chronic obstructive pulmonary disease. Respiration
1993;60:216-220.

31. Borson S, McDonald GJ, Gayle T, Deffebach M. Lakshminarayan
S. VanTuinen C. Improvement in mood, physical symptoms, and
function with nortriptyline for depression in patients with
chronic obstructive pulmonary disease. Psychosomatics I992;33:
190-201,

32. Smoller JW, Pollack MH. Systrom D, Kradin RL. Sertraline effects
on dyspnea in patients with obstructive airways disease. Psychoso-
matics 1998;39:24-29.

33. O'Neill PA, Stretton TB, Stark RD, Ellis SH. The effect of indo-
methacin on breathlessness in patients with diffuse parenchymal dis-
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34. Schiffman GL. Stansbury DW. Fischer CE, Sato Rl, Light RW,
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35. Giron AE, Stansbury DW, Fischer CE, Light RW. Lack of effect of
dextromethorphan on breathlessness and exercise performance in
patients with chronic obstructive pulmonary disea.se (COPD). Eur
Respir J 1991;4:532-535.

36. Taguchi N, Ishikawa T, Sato J. Nishino T. Effects of induced met-
abolic alkalosis on perception of dyspnea during flow-resistive load-
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37. Stark RD. O'Neill PA, Russell NJ, Heapy CG. Stretton TB. Effects
of small-particle aerosols of local anaesthetic on dyspnoea in patients
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38. Winning AJ, Hamilton RD, Guz A. Ventilation and breathlessness
on maximal exercise in patients with interstitial lung disease after
local anaesthetic aerosol inhalation. Clin Sci 1988;74:275-281.

39. Wilcock A. Corcoran R, Tattersfield AE. Safety and efficacy of
nebulized lignocaine in patients with cancer and breathlessness. Pal-
liat Med 1994;8:35-38.

40. Spence DP, Graham DR, Ahmed J, Rees K, Pearson MG. Calverley
PM. Does cold air affect exercise capacity and dyspnea in stable
chronic obstructive pulmonary disease? Chest 1993;103:693-696.

41. Gleeson C. Spencer D. Blood transfusion and its benefits in pallia-
tive care. Palliat Med 1995;9:307-313.

42. Sibuya M, Yamada M. Kanamaru A, Tanaka K, Suzuki H. Noguchi

E, et al. Effect of chest wall vibration on dyspnea in patients with
chronic respiratory disease. Am J Respir Crit Care Med 1 994; 149:
1235-1240.

43. Cristiano LM, Schwartzstein RM. Effect of chest wall vibration
on dyspnea during hypercapnia and exerci.se in chronic obstruc-
tive pulmonary disease. Am J Respir Crit Care Med 1997; 155:
1552-1559.

44. Nakayama H, Shibuya M. Yamada M, Suzuki H, Arakawa M. Homma
I. In-phase chest wall vibration decreases dyspnea during arm ele-
vation in chronic obstructive pulmonary di.sca.se patients. Intern Med
1998;37:831-835.

45. Guz A. Noble MIM, Eisele JH, Trenchard D. Experimental results of
vagal block in cardiopulmonary disease. In: Porter R. editor. Breath-
ing. Hering-Breuer Centenary Syinposium. London: Churchill-Liv-
ing.stone; 1970.

46. Berglund E, Furhoff AK, Lofslrom B, Oquist L. A study of the

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effects of unilateral vagus nerve block in a dyspnoeic patient. Scand
J RespirDis 1971;52:34-38.

47. Davies SF, McQuaid KR. Iber C, McArthur CD, Path MJ, Beebe DS,
Helseth HK. Extreme dyspnea from unilateral pulmonary venous
obstruction: demonstration of a vagal mechanism and relief by right
vagotomy. Am Rev Respir Dis 1987:136:184-188.

48. Jobst K, Chen JH, McPherson K, Arrowsmith J, Brown V, Efthimiou
J, et al. Controlled trial of acupuncture for disabling breathlessness.
Lancet 1986;2:1416-1419.

49. Filshie J, Penn K, Ashley S, Davis CL. Acupuncture for the relief of
cancer-related breathlessness. Palliat Med 1996;10:145-150.
Maa SH, Gauthier D, Turner M. Acupressure as an adjunct to a
pulmonary rehabilitation program. J Cardiopulm Rehabil 1997; 1 7:
268-276.

Rautalahti M, Virtamo J, Haukka J, Heinonen OP, Sundvall J, Al-
banes D, Huttunen JK. The effect of alpha-tocopherol and beta-
carotene supplementation on COPD symptoms. Am J Respir Crit
Care Med 1997;156:1447-1452.

50,

Discussion

Pierson:* Would you comment on
the use of supplemental oxygen as
treatment for dyspnea?

Manning: Sure, I didn't cover that
because I knew it was the subject of
last year's symposium. I think there is
good evidence that supplemental ox-
ygen relieves dyspnea. I think there's
actually evidence that supplemental
oxygen relieves dyspnea even in pa-
tients in whom third party payers don't
see it as an indication.

There was a study published a few
years ago, in which I think Dean was
the first author, that looked at the ad-
ministration of oxygen in patients who
were not hypoxic at rest — some of
whom didn't even develop significant
exercise-induced desaturation.' It was
a well-designed study. They looked at
oxygen and a comparable flow of air
and found there was significant im-
provement in dyspnea, even in the pa-
tients who didn't meet the traditional
guidelines for administering oxygen.

So I think supplemental oxygen is
an effective treatment. And I think it
is a thorny issue. There are many pa-
tients who say they feel better with
oxygen. In the past we've always said
"Well, you must be crazy: your Pq,
[partial pressure of oxygen] is above
55 mm Hg, so you can't possibly be

*David J Pierson MD, Division of Pulmonary
and Critical Care Medicine, Department of Med-
icine, University of Washington, Seattle, Wash-
ington.

dyspneic. This is all in your mind. It's
a placebo effect, and the oxygen is not
beneficial." It's difficult to know what
to do with those patients because right
now there's no method of reliably get-
ting third party payment for the use of
supplemental oxygen in that patient
population.

REFERENCE

1 . Dean NC, Brown JK, Himelman RB, Doherty
JJ, Gold WM, Stulbarg MS. Oxygen may
improve dyspnea and endurance in patients
with chronic obstructive pulmonary disease
and only mild hypoxemia. Am Rev Respir
Dis 1992;146:941-945.

Silvestri: With the exception of the
hospice benefit. Supplemental oxygen
is covered under the hospice benefit,
irrespective of Pq,.

Benditt: A follow-up to Dr Pierson:
Remembering a few years back, there
was some question as to whether flow
across the nasal mucosa could relieve
dyspnea, and that might be the effect
of oxygen face masks.

Manning: I think there have been
conflicting results. As I recall, there
was a study by Liss that used oxygen
and comparable flows of air and found
no beneficial effect of air alone on
dyspnea.' I don't remember all the de-
tails of the study. I think there have
been some other studies that have sug-
gested that a flow of air alone may be
beneficial.-' So I don't know that
there's a definite answer to that ques-
tion yet.

REFERENCES

1. Liss HP, Grant BJ. The effect of nasal flow
on breathlessness in patients with chronic
obstructive pulmonary disease. Am Rev Re-
spir Dis 1988:137:1285-1288.

2. Swinbum CR, Mould H, Stone TN, Corris
PA, Gibson GJ. Symptomatic benefit of sup-
plemental oxygen in hypoxemic patients with
chronic lung disease. Am Rev Respir Dis
1991;143:913-915.

3. Spence DP. Graham DR. Ahmed J, Rees K,
Pearson MG, Calverley PM. Does cold air
affect exercise capacity and dyspnea in sta-
ble chronic obstructive pulmonary disease?
Chest 1993:103:693-696.

Hansen-FIasclien: A comment and
a question. There's a device available
now that you may or may not know
about that might allow greater testing
of the efficacy of the chest wall vi-
bration on dyspnea. The ABI thera-
peutic vest [ABI Vest Airway Clear-
ance System, American Biosystems,
St Paul, Minnesota] is being used now
as an alternative to chest physiother-
apy in the treatment of severe bron-
chiectasis. This is a fitted vest attached
to a floor device that injects air at a
rapid frequency into the vest to create
a vibration within the chest. This vest
can be gated to act only during inspi-
ration, and it can be worn with rea-
sonable comfort for a number of hours
if the vest is properly fitted. Adjusted
appropriately for the purpose, it just
might help relieve dyspnea by gener-
ating another sensory input from the
thorax.

Manning: The one problem I can
see with that is that although it may
overcome the logistic issues, efficacy
would still need to be demonstrated.
If you look at studies of chest wall

Respiratory Care • November 2000 Vol 45 No 11

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Dyspnea Treatment

vibration — and many of these studies
have beendone in normal subjects —
it's possible to either alleviate dys-
pnea or induce dyspnea. So if you have
something that's encompassing the en-
tire chest, you're vibrating both the
inspiratory and so-called expiratory in-
tercostal muscles, and I think it's im-
possible to predict whether overall it
would cause or alleviate breathlessness.

Hansen-Flaschen: The initial expe-
rience seems to be that in-phase vi-
bration during inspiration may reduce
dyspnea, and out-of-phase vibration or
expiratory vibration increases it rela-
tive to baseline.

Manning: Right. But if you're vi-
brating the entire chest, it's very dif-
ficult to have either pure in-phase or
pure out-of-phase vibration, so aside
from any effects it has on secretions, I
don't know what effect it would have
on breathlessness.

Hansen-Flaschen: Another ques-
tion is whether you or someone knows
of useful data to support the often held
view that transtracheal oxygen reduces
dyspnea during exercise relative to na-
sal prongs.

Benditt: We studied transtracheal
oxygen with air versus O2, and it ac-
tually appears to be the effect of the
gas insufflated into the trachea,' and
probably (based on later work by
Marini and others-) it's really a wash-
out of the dead space. You get a de-
crease in minute ventilation with tran-
stracheal delivery of gas, compared to
nasal delivery of oxygen.

REFERENCES

1. Benditt J. Pollock M, Roa J, Celli B. Tran-
stracheal delivery of gas decreases the oxy-
gen cost of breathing. Am Rev Respir Dis
I993;I47;I207-I210.

2. Ravenscraft SA. Burke WC. Nahuiii A. Ad-
ams AB. Nakos G. Marcy TW, Marini JJ,
Tracheal gas insufflation augments C02
clearance during mechanical ventilation. Am
Rev Respir Dis 1993;148:345-351.

Hansen-Flaschen: Is the benefit
proportional to the flow rate?

Benditt: Yes. This was with COPD
patients who had the catheters, and there
was a clear dose-response effect.

Rubenfeld: I just want to ask a sort
of annoying methodological question
about these small negative studies. I
always get nervous when I see lots of
small negative studies put together as
evidence of non-effect. I wondered,
since you've commented in a very so-
phisticated way about the methods in
a lot of these, whether you'd care to
comment on our confidence in the lack
of effect of chronic use of opiates in
COPD patients in what appear to be a
lot of small negative studies.

Manning: I agree with you. I've ac-
tually tried to be cautious and rather
than saying that they don't work, I
think it would be most accurate to say
there's no convincing or compelling
evidence that they do work. That's true
not only for opiates, but many of the
strategies I've discussed. I haven't
done a formal power analysis to know
what the ability of these studies was
to detect an effect of any given mag-
nitude.

On the other hand, particularly for
opiates, there have been 5 longer-term
studies, which basically split down the
middle, as I recall. Three of the stud-
ies I cited found no effect, '-^ and two
found some beneficial effect.'*-'* So I
think that's a valid question, and most
of these, as I said, have been plagued
by small numbers of subjects. I don't
know of any agent that has been looked
at where there were hundreds of sub-
jects. Most had 10 or 20 subjects. And
that's a problem for all of these strat-
egies.

REFERENCES

I. Rice KL. Kronenberg RS, Hedemark LL,
Niewoehner DE. Effects of chronic admin-
istration of codeine and promethazine on
breathlessness and exercise tolerance in pa-

tients with chronic airflow obstruction. Br J
Dis Chest 1987;81:287-292.

2. Eiser N, Denman WT, West C, Luce P. Oral
diamorphine: lack of effect on dyspnoea and
exercise tolerance in the "pink puffer" syn-
drome. Eur Respir J 1991;4:926-931.

3. Poole PJ, Veale AG. Black PN. The effect
of sustained-release morphine on breathless-
ness and quality of life in severe chronic
obstructive pulmonary disease. Am J Respir
Crit Care Med 1998;157:1877-1880.

4. Bar-Or D. Marx JA, Good J. Breathlessness,
alcohol, and opiates. N Engl J Med 1982;
306:1363-1364.

5. Johnson MA, Woodcock AA, Geddes DM.
Dihydrocodeine for breathlessness in "pink
puffers". Br Med J (Clin Res Ed) 1983;286:
675-^77.

Rubenfeld: Just a follow-up; We
frequently use steroids, in my opin-
ion, in a palliative way in treating pa-
tients with severe COPD because we
do what we tell people not to do, which
is, despite lack of objective pulmo-
nary function evidence, if patients have
a symptomatic improvement with ste-
roids, we continue them. I wonder if
you would care to comment on the
risk-benefit trade-off of using steroids
in a palliative way for symptom relief
versus narcotics.

Manning: Well, a couple of com-
ments. First, you mentioned that we
often use things even though there's
no objective evidence that lung func-
tion changes. Particularly in patients
with obstructive lung disease, tradi-
tionally there's been a focus, if not
obsession, on the forced expiratory
volume in the first second (FEV,), as
if the FEV, encompasses all dimen-
sions of the disorder in patients who
have obstructive lung disease.

If you think about it mechanistically,
expiratory air flow obstruction has
nothing to do with, or at least has no
direct effect in producing dyspnea in
patients with obstructive lung disea.se.
It has a number of secondary effects
that cause dyspnea, such as placing a
burden on the inspiratory muscles. So
when we look at a measure of expi-
ratory air flow, and say it didn't
change, and then use that to judge the

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Dyspnea Treatment

state of the person's disease, I think
there are problems.

When we look at studies of bron-
chodilators, for example, we see many
patients in whom FEV, doesn't
change, but in whom symptoms im-
prove, and then, if we actually mea-
sure lung volumes, we know that in
many of these patients there may be
changes in the degree of hyperinfla-
tion. So FEV, may be constant, but
they're less hyperinflated, and there-
fore they are less dyspneic.

As far as steroids are concerned, I
don't really know how to answer your
question, because I don't think there
are any data one way or the other. We
often use steroids based upon some
studies that show a small number of
patients respond to them chronically'
and studies that show, in the short-
term in the setting of an acute exac-
erbation, steroids improve air flow ob-
struction.- "^ I think we often use
steroids because we have nothing else
to offer. I don't know of any evidence
about the use of steroids in other pa-
tient populations. Where I work, some
of the oncologists believe that steroids
reduce dyspnea in lung cancer. To the
best of my knowledge, no one has ex-
amined that in any systematic way.

REFERENCES

1. Mendella LA, Manfreda J, Warren CP, An-
thonisen NR. Steroid response in stable
chronic obstructive pulmonary disease. Ann
Intern Med. 1982:96:17-21.

2. Thompson WH, Nielson CP, Carvalho P,
Charan NB, Crowley JJ. Controlled trial of
oral prednisone in outpatients with acute
COPD exacerbation. Am J Respir Crit Care
Med 1996:154:407^12.

3. Niewoehner DE, Erbland ML, Deupree RH,
Collins D. Gross NJ, Light RW, et al. Effect of
systemic glucocorticoids on exacerbations of
chronic obstructive pulmonary disease. Depart-
ment of Veterans Affairs Cooperative Study
Group. N Engl J Med 1999:340:1941-1947.

Heffner: It appears that all of us
use opiates at the end of life to palliate
dyspnea. Considering that there are
many different agents and varying
routes of administration of these drugs,
we should ask how you manage, in

operational terms, patients at the end
of life with progressive dyspnea?

Manning: My approach depends on
the setting. For someone who is in the
intensive care unit, in whom there's
no easy oral access, I tend to use in-
travenous medications, and in some-
one who's able to take medications
orally, I've used oral morphine. Those
have been the two techniques I've used
most often. As far as I know, there's
no evidence that any one agent or route
of administration is superior to any
other, and my presumption is that if
you give equal doses of different opi-
ates, you probably get a comparable
effect. However, to the best of my
knowledge, at least in terms of dys-
pnea, there are no comparative studies
of one agent versus another agent.

Sorensen: As a follow-up to that,
this is a "stand up for your roots" com-
ment. I would be remiss if I didn't
mention the fact that nebulized mor-
phine is one form of opiate that respi-
ratory therapists are allowed to admin-
ister. The fact that the controlled
studies really aren't always showing
efficacy leads me to think maybe we
need more controlled studies. I know
some therapists who are nebulizing
fentanyl instead of the morphine sul-
phate because sulphates can cause
problems. They are also mixing albu-
terol with the fentanyl, which seems
to have some really good results at the
bedside. When you're looking at pal-
liative care, with the therapist being at
bedside, and the patient saying "I'm
very short of breath; do something for
me." nebulization is one route of opi-
ate administration therapists would be
able to deliver.

Manning: I would ask whether
there's any compelling reason to do
these studies. You have someone
who's dying, and in whom dyspnea is
a prominent symptom, and you know
you can give them intravenous or sub-
cutaneous or oral opiates. I don't know
of any compelling reason not to do

that. Given the lack of evidence that
nebulized opiates work, particularly in
the dying patient, I would say, use
systemic opiates. Until there's a study
done (and, again, I'm not convinced
that those are important studies to do,
at least in this population of patients,
in whom death is imminent), and until
there's really some evidence that they
work, I would say go with some sys-
temic route of administration of opiates.

Sorensen: Unfortunately, most of
our evidence is anecdotal. We really
don't have a lot of proof other than at
the bedside. The family is relieved,
the patient is relieved, and the thera-
pist is relieved because the patient is
able to sleep up to 4 hours after re-
ceiving the nebulized morphine.

Pierson: In our institution, it is a
very common thing for respiratory
therapists and nurses to put lidocaine
down the endotracheal tubes of agi-
tated, intubated patients. That's not ex-
actly what we're talking about, but it
is a widespread practice and some-
thing respiratory therapists are enti-
tled by their scope of practice to do,
so I wonder if you'd comment on that.

Manning: Well, as far as the lido-
caine is concerned, I'm not sure what
indication you're generally using it for.
At our institution it's used most often
for patients who have intractable
cough associated with the endotracheal
tube. So this may be an example of
where you may have competing inter-
ests. The lidocaine may have benefi-
cial effects on cough, and if that's caus-
ing the most discomfort to the patient,
it may outweigh any adverse effects it
has on dyspnea, which admittedly most
often most of us are not in the habit of
routinely assessing in the intensive
care unit. We see the patient cough-
ing, coughing, coughing, and dump
some lidocaine down the tube. If the
cough goes away, we're happy. If, in
fact, the cough is a very distressing
symptom, and there's a huge effect on
the cough, and there's only a modest

Respiratory Care • November 2000 Vol 45 No 1 1

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Dyspnea Treatment

effect on dyspnea, then even if we were
to do a dyspnea assessment, we might
come to the conclusion that the ben-
eficial effects on cough outweighed
any adverse effects on dyspnea.

Tudy Giordano: Are the benzodi-
azepines and the opiates doses used in
these studies "across the board doses"?

Manning: I'm not sure what you
mean by "across the board."

Tudy Giordano: Are they age-spe-
cific doses?

Manning: No. Different studies
have used different doses.

Tudy Giordano: Appropriately ad-
justing the doses (according to age,
weight, and renal and/or hepatic func-
tion) of the benzodiazepines and opi-
ates will decrease the adverse effects
of these drugs, especially in the older
population or those with comorbid
conditions.

Manning: There's no question that
the side effects of opiates are dose-
dependent.

Tudy Giordano: The half-lives of
benzodiazepines are incredibly long
(about 78 hours), and I wonder if it
skews these studies, particularly in
older adults and severely compromised
patients.

Manning: Well, as far as benzodi-
azepines are concerned, there have
only been 3 controlled studies.'-^
There are a number of uncontrolled
studies, which have the usual prob-
lems,"-* but in 3 controlled studies of
3 different agents, all of them were
negative studies. We've already dis-
cussed the fact that they were small
studies. So I think we can say it wasn't
a situation where breathlessness was a
lot better, but there were disabling or
troublesome side effects. There was
no effect on breathlessness, which in
my view, makes any side effects un-

acceptable, if there's no beneficial ef-
fect on breathlessness. I think we can
say that there's no good evidence that
benzodiazepines relieve breathlessness.

REFERENCES

1 . Woodcock AA, Gross ER, Geddes DM. Drug
treatment of breathlessness: contrasting ef-
fects of diazepam and promethazine in pink
puffers. Br Med J (Clin Res Ed) 1981 ;283:
343-346.

2. Eimer M, Cable T, Gal P, Rothenberger LA,
McCue JD. Effects of clorazepate on breath-
lessness and exercise tolerance in patients
with chronic airflow obstruction. J Fam Pract
1985;21:359-362.

3. Man GC, Hsu K. Sproule BJ. Effect of al-
prazolam on exercise and dyspnea in pa-
tients with chronic obstructive pulmonary
disease. Chest 1986:90:832-836.

4. Mitchell-Heggs P, Murphy K, Minty K, Guz
A, Patterson SC, Minty PS, Rosser RM. Di-
azepam in the treatment of dyspnoea in the
'pink puffer' syndrome. Q J Med 1980;49:
9-20.

5. Greene JG. Pucino F. Carlson JD. Storsved
M, Strommen GL. Effects of alprazolam on
respiratory drive, anxiety, and dyspnea in
chronic airflow obstruction: a case study.
Pharmacotherapy 1989;9:34-38.

Tudy Giordano: My point, too, is
that you see a lot of abuse of that in
the acute care as well as the skilled
nursing facilities.

Manning: I think there are many
beliefs about many agents and their
effects on breathlessness, but I think
many of them are unsubstantiated.

Levy: I hesitate to bring this up
again, because it is a can of worms.
This issue of nebulized opiates wor-
ries me a little bit, especially in the
critical care unit. Opiates are the only
agents for which there is clear evi-
dence for a positive impact on breath-
lessness, and we're talking about go-
ing to a different mode of delivery
just because respiratory therapists can
give it. I'm very fearful about that,
and I wonder if our motivation here is
the interest of patient care. I realize
this is a much longer conversation, but
since these proceedings are being pub-
lished, I feel strongly that we have to
look at that at some point.

Manning: I think it's really key to
move beyond who can do what and
who's doing what, to really look at
what the evidence is. I think there's a
long history of beliefs about the effi-
cacy of many different interventions
for many different disorders that have
not been held up to examination. I've
expressed my concern that we have a
treatment that works — systemically
administered opiates — and we really
have an absence of any scientific in-
formation — or at least the bulk of sci-
entific information suggests that neb-
ulized opiates don't work. That's my
major concern about the use of nebu-
lized opiates.

Levy: I think we're talking specifically
here about the critical care unit where
there is ready access to a nurse and the
ability to get that intravenous opiate.

Manning: I think the same is true
in many oncology units as well.

Fins: Just making the link between
affective state and dyspnea: have there
been any studies with SSRIs [selective
serotonin reuptake inhibitors] or antide-
pressants like Paxil and their efficacy?

Manning: 1 think it would be more
accurate to say there have been re-
ports of their efficacy. I was able to
find studies of nortriptyline' and ser-
traline, ^ but the patients were all de-
pressed as well as dyspneic. There
have been few randomized con-
trolled studies of antidepressants, ei-
ther SSRIs or tricyclics, in the treat-
ment of dyspnea.

REFERENCES

1. Borson S, McDonald GJ, Gayle T, Deffebach
M, Lxikshminarayan S. VanTuinen C. Improve-
ment in mood, physical symptoms, and func-
tion with nortriptyline for depression in pa-
tients with chronic obstructive pulmonary
disease. Psychosomatics 1992:33:190-201.

2. Smoller JW, Pollack MH. Systrom D, Kra-
din RL. Sertraline effects on dyspnea in pa-
tients with obstructive airways disease. Psy-
chosomatics 1998;39:24-29.

1354

Respiratory Care • November 2000 Vol 45 No 1 1

Managing Secretions in Dying Patients

Helen M Sorenson MA RRT

Introduction
Bronchorrhea

Management of Bronchorrhea
Purulent Sputum

Management of Purulent Sputum
Airway Clearance Mechanism

Passive Therapy

Active Therapy
Pharmacologic Interventions

fi Agonists

Methylxanthines

Corticosteroids

Mucolytics

Guaifenesin
Drugs That Inhibit Mucus Clearance

Benzodiazepines

Barbiturates

Opiates
Secretion Control in Palliative Care

Death Rattle

End of Life
Summary

[Respir Care 2000;45(11):1355-1362] Key words: bronchorrhea, saliva, pu-
rulent sputum, antisialagogues, anticholinergics, death rattle, passive therapy,
active therapy, palliative care.

Introduction

Excess secretions, while not the most common pulmo-
nary symptom in dying patients, are nevertheless trouble-
some. Secretions can partially occlude the airway, leading
to increased airway resistance and increased work of breath-
ing. Excess secretions can also precipitate the sensation of
dyspnea and result in loss of sleep.

Helen M Sorenson MA RRT is affiliated with Metropolitan Community
College, Omaha, Nebraska.

A version of this paper was presented by Ms Sorenson during the Re-
spiratory Care Journal Conference, Palliative Respiratory Care, held
May 19-21, 2000 in Canciin, Mexico.

Correspondence: Helen M Sorenson MA RRT, Metropolitan Community
College, 5730 N 30th. #18, Omaha NE 68111. E-mail:
hsorenson@metropo.mccneb.edu.

Secretions produced in the oral cavity and by the pul-
monary epithelium are classified respectively as saliva and
sputum. Saliva production is controlled by the nervous
system, at a rate of about 3 pints per day.' Ptyalism or
excessive secretion of saliva can compromise an already
marginal airway. Sputum is a mucous secretion produced
by the goblet cells and the submucosal glands at a rate
of < 100 mL per day.^ Bronchorrhea is excess production
of watery sputum, 100 mL or more per day."* Sputum that
is viscous is described as being mucoid. Purulent sputum
contains pus. The two most troublesome categories of se-
cretions in dying patients are bronchorrhea and purulent
sputum.

Bronchorrhea

The excess production of watery sputum can pose a
pulmonary problem. Even though the secretions are thin,

Respiratory Care • Novemeber 2000 Vol 45 No 1 1

1355

Managing Secretions in Dying Patients

the volume alone can result in airway obstruction. Exces-
sive bronchial secretions also interfere with normal sleep-
ing^ and can trigger a persistent cough. Bronchorrhea is
noted occasionally in patients presenting with severe epi-
sodes of asthma. In dying patients, bronchorrhea is most
often associated with lung cancer.

Alveolar cell carcinoma accounts for close to 9% of all
lung cancer. About 6% of these patients develop bronchor-
rhea.'* Research indicates, however, that the malignancy
associated with bronchorrhea is not all primary pulmonary
site carcinoma. Lembo and Donnelly reported a case of a
39-year-old man who developed massive bronchorrhea (2-
3.5 L/d) two years after being treated for pancreatic can-
cer. The cancer had metastasized to the lungs, but chem-
ical analysis of the bronchial fluid confirmed the pancreas
as the origination site.-''

In 1996, Shimura and Takishima published a case in-
volving a 52-year-old woman diagnosed with colon cancer
and presenting with bronchorrhea (150-300 mL/d). Again,
the cancer had spread, but histology findings revealed lym-
phangitic metastasis of ascending colon carcinoma to the
lungs.*

In addition to secretion volume overload, drastic elec-
trolyte and fluid loss can accompany bronchorrhea. Hidaka
and Nagao reported on a 49-year-old woman with bron-
chioalveolar carcinoma, who was producing 300-400 mL/d
of watery sputum. Examination of the sputum revealed the
following electrolyte concentration: Na"^ = 134 mEq/L,
Cr = 116 mEq/L, and K"^ = 7.4 mEq/L. Because the
sputum contained almost the same concentration of elec-
trolytes as the serum, large water/electrolyte depletion oc-
curred through the lungs. The patient was treated with
corticosteroids, atropine sulfate, and cytotoxic drugs, all of
which failed to reduce the sputum volume. Several months
later sputum volume was close to 9 L per day. At this point
it was necessary to administer about 10 L of fluid daily
just to restore the fluid and electrolyte levels. The patient
expired from severe respiratory failure.^

Management of Bronchorrhea

Efforts to control bronchorrhea in these case studies
have included administration of corticosteroids, parasym-
patholytics, antihistamines, adrenocorticotropic hormone
(ACTH), chemotherapy, radiation therapy, and irrigation
of the stellate ganglion, all without much success.

In a case submitted by Krawtz et al, a 56-year-old man
who presented with alveolar cell carcinoma was success-
fully treated with external beam radiation therapy." The
authors were quick to point out, however, that the patient
had a relatively localized pulmonary involvement, which
allowed for radiation therapy.

Antisialogogues are agents that reduce or stop the flow
of saliva. Anticholinergics have the ability to perform this

function. Atropine sulfate, hyoscyamine sulfate (Levsin),
and hyoscine hydrobromide (scopolamine) have all been
used to some degree of effectiveness in managing bron-
chorrhea. Atropine drops administered to the back of the
throat in terminally ill patients provide fairly rapid relief
from excess secretions. Cholinergic blocking agents are
not always indicated in older or compromised patients
because of their adverse effects. In palliative care, how-
ever, the long-term adverse effects may not be an issue.
Morphine sulfate, commonly used as a narcotic analge-
sic in terminal illness, can also result in slowing of saliva
production. When bronchorrhea is interfering with the pa-
tient's sleep pattern and comfort level, it needs to be ad-
dressed.

Purulent Sputum

Infections, common in patients with chronic obstructive
pulmonary disease (COPD), produce purulent sputum. Pa-
tients with pneumonia or resolving pulmonary tuberculo-
sis may produce small amounts of purulent sputum. Pa-
tients with chronic bronchitis, bronchiectasis, or lung
abscesses typically produce a large volume of purulent
sputum, as much as 200-500 mL per day.-

The mechanism for triggering excess sputum produc-
tion is complex. Hypersecretion by the mucous glands has
long been accepted as a component of obstructive lung
disease. The presence of excess mucus in the airway, edema
of the airway wall, and a decrease in ciliary beat frequency
lead to impaired mucociliary clearance.** More recent stud-
ies have added considerable information regarding the role
of neutrophil elastase in the induction of mucous gland
hyperplasia and mucus hypersecretion. "^ Neutrophil elas-
tase-induced lung injury impairs immune function, which
reduces the ability of the airway to remove bacteria. Col-
onization of bacteria leads to the formation of purulent
sputum. Recent studies indicate that development of pu-
rulent sputum alone is a distinctive feature of bacterial
infection.*^

Purulent secretions, frequently colonized by Streptococ-
cus species, Pseudomonas species, Moraxella catairhalis,
and Haemophilus influenzae,"' are tenacious. Terminally
ill patients are often unable to expectorate secretions be-
cause of decreased levels of consciousness and a weak
cough." Secretions may also be inspissated because of
reduced fluid intake. Consequently, secretion removal be-
comes difficult for the patient, frustrating for the health
care provider, and exacts a toll in energy cost to the patient.

Management of Purulent Sputum

Increasing body hydration facilitates removal of puru-
lent sputum. Recommendations to prevent dehydration are
fluid intake of 1,500-2,000 mL per day unless contrain-

1356

Respiratory Care • Novemeber 2000 Vol 45 No 11

Managing Secretions in Dying Patients

dicated, fresh water within reach of the patient, ice if de-
sired, and additional fluids with medications.'- Although
not always considered palliative, intravenous access will
allow for fluid/electrolyte replacement in very debilitated
patients.

Identification of the bacterial component(s) of purulent
sputum will aid in determining therapy. Because patients
often have an impaired cough mechanism and aggressive
therapy may not be desired, retrieving a sputum specimen
for Gram stain, culture, and sensitivity is not always pos-
sible. A retrospective chart analysis was conducted by
Dewan et al to determine, in part, if the choice of antibiotic
had an effect on the outcome of treatment for an acute
exacerbation of COPD. Many other factors were consid-
ered in the study, such as age, severity, frequency of ex-
acerbation, comorbid medical conditions, and severity of
lung disease. Both first-line antibiotics and newer second-
line antibiotics were evaluated retrospectively for success
rate. Surprisingly, the choice of antibiotic therapy did not
affect treatment outcome. '^ Previous studies have indi-
cated that patients with a long duration of COPD and
severe underlying lung disease tend to fail or have a higher
recurrence rate with older drugs such as ampicillin or amoxi-
cillin.'**'-'^ When a patient cannot spontaneously expecto-
rate a sputum specimen, the need to collect a sample via
suctioning should be weighed carefully. Suctioning is in-
vasive and can be painful. If the choice of antibiotics
makes no significant difference in treatment outcome, pre-
scribing a broad-spectrum antibiotic, perhaps with the ex-
clusion of ampicillin or amoxicillin, in many cases can
spare the patient additional discomfort.

Bronchodilators and mucolytics have for many years
been the primary therapeutic interventions for exacerba-
tion of COPD and purulent sputum. Newer approaches to
the management of COPD are being investigated that may
alter the traditional treatment.' What role these newer meth-
ods will have in palliative care remains to be seen.

Because bronchorrhea and purulent secretions are unique
in their etiologies, specific treatments are likely to be dif-
ferent. Because they are both respiratory tract secretions, a
certain number of nonspecific therapies will be utilized for
both. The issue becomes clouded by the fact that many
individuals with COPD develop lung cancer and may be at
risk for both bronchorrhea and purulent secretions. Man-
aging secretions in dying patients therefore may become
trial and error — using what works and discontinuing what
appears ineffective.

Airway Clearance Mechanism

Depending on the level of palliative care desired by the
patient and the family, there are a number of ways in
which secretions can be managed. Nonaggressive airway
clearance mechanisms might include an increased level of

fluid intake, adequate nutritional support, and patient po-
sitioning.

Passive Therapy

Hydration. As was previously mentioned, increasing
fluid intake improves systemic and airway hydration. The
mucociliary escalator is more effective when the airways
are adequately hydrated. Water imbalances are more com-
mon in debilitated patients. The edema that accompanies
cardiac and renal failure, and the dehydration that may be
the result of fever, infection, or diarrhea all deplete the
body's store of water.'* Fluids should be offered to the
patient at least every two hours.

Nutrition. Nutritional support can be as problematic as
fluid support. Patients with chronic life-threatening illness
may decline food. A poor appetite and poor sense of taste
may be one manifestation of a medication adverse effect.
Excess secretions and chronic coughing can debilitate the
patient almost to exhaustion. When breathing and eating
both take energy, breathing becomes the priority. The an-
orexia-cachexia syndrome is common in COPD. The wast-
ing, loss of appetite, and weakness, however, may not be
inevitable. A number of newer drugs are available and
more are in investigational stages for managing the symp-
toms of anorexia-cachexia.'^ In the face of severe reduc-
tion in dietary intake, both the benefits and disadvantages
of enteral or parenteral nutritional support should be dis-
cussed with the patient and the family."*

Positioning. Postural drainage is an accepted respiratory
care therapeutic modality. Placing patients in Trendelen-
burg's position makes use of gravity to help move secre-
tions in a cephalad direction. Patients are turned so that the
segment to be drained is in a vertical position relative to
gravity," and they are kept in that position for up to 15
minutes or as tolerated by the patient. For postural drain-
age to be effective secretion management therapy, the pa-
tient should be producing at least 25-30 mL of sputum per
day.-" Refer to the American Association for Respiratory
Care Clinical Practice Guidelines for specific indications and
contraindications before commencing this passive mode of
therapy. 2'

Active Therapy

Implied by active therapy is the inclusion of additional
movement of the patient, mechanical manipulation of the
patient, and/or active participation by the patient.

PercussionA'ibration. Percussion or vibration is an aug-
mentation to postural drainage and secretion clearance. It
can be performed with mechanical or pneumatic devices

Respiratory Care • Novemeber 2000 Vol 45 No 1 1

1357

Managing Secretions in Dying Patients

or by hand. Not all health care professionals, however, are
supportive of the generic efficacy of percussion. It is not
believed to be universally beneficial for all pulmonary
diagnoses. Percussion coupled with postural drainage has
proven to be very effective in patients with cystic fibrosis
and bronchiectasis. In patients who produce copious
amounts of secretions, percussion is therapeutic. In pallia-
tive care, pain may preclude administration of this therapy.
If percussion is tolerated and seems to aid in secretion
management, and positioning is also tolerated, regular treat-
ments are indicated. If ineffective, therapy should be dis-
continued.

Directed Cough. Directed cough techniques have been
found to be effective in secretion removal; however, in
palliative care this technique may be limited. Patients must
be able to follow directions and take good deep breaths.
Directed cough is a deliberate maneuver that is taught,
supervised, and monitored. 22 When patients with copious
secretions have the mobility to change positions, control
their breathing, and cough in sequence, this secretion con-
trol method is helpful. Weakened or compromised pa-
tients, obtunded, paralyzed, or uncooperative patients, or
patients in a great deal of pain would not likely derive
benefit from this technique.

Mechanical Insufflation-Exsufflation. The insuffla-
tion-exsufflation technique is probably older than most
respiratory therapists (RTs) in the workforce today. This
device, known as the "artificial cough machine" or "ex-
sufflator," mechanically assisted in secretion control.
Newer methods of secretion control, such as suctioning,
gradually replaced the cyclic positive/negative pressure
device. A new, improved version of the insufflation-ex-
sufflation device, the MI-E, was reintroduced in the 1980s
for use on patients with neuromuscular disease. Both man-
ually assisted coughing and MI-E are effective and safe
methods for facilitating secretion clearance in some neu-
romuscular ventilator users. ^^ Because it is less invasive
than suctioning, it may be preferred by patients, but the
technical training in the use of the device is more time-
consuming.

Suctioning. Suctioning via the oral or nasotracheal path-
way or through artificial airways has become a standard
at junct to bronchial hygiene therapy in patients who pro-
duce large amounts of secretions. Oral suctioning with a
Yankauer suction tip can be self-administered by most
patients. Although not the most efficient secretion removal
method, it gives the patients a sense of control and can be
made available on an as-needed basis for the patient. Na-
sotracheal suctioning, if indicated, can be traumatic. The
use of a na.sal trumpet when frequent nasotracheal suction-
ing is needed will ease the process for both the patient and

the health care professional. Newer nasopharyngeal air-
ways are made of a more pliable material and when lubri-
cated can be easily inserted. One disadvantage to using a
nasal trumpet is the need for a smaller suction catheter.
Standard 14 French suction catheters are usually too large
to slide easily through most nasopharyngeal airways. If it
becomes necessary to physically restrain the patient just to
suction the airways, perhaps another method of secretion
control should be considered.

When the patient is on controlled mechanical ventila-
tion, suctioning as needed can be done either with an
in-line or external catheter. Many institutions routinely
instill saline to aid in secretion removal prior to suctioning.
Others prefer to use saline only if it is indicated for tena-
cious secretions. Many professionals are questioning the
standard practice of saline instillation. One study suggested
that routine saline irrigation actually increased the inci-
dence of nosocomial pneumonia.-'' Strict sterile procedure
coupled with pre and post oxygenation of the patient will
reduce the incidence of complications while effectively
removing excess secretions.

Positive Expiratory Pressure Therapy. Positive expi-
ratory pressure (PEP) therapy is a secretion clearance tech-
nique that was developed in Denmark in the 1970s and
introduced in the United States in the 1990s. Handheld
PEP devices and utilization of PEP technique splints air-
ways open and promotes collateral ventilation. This allows
the patient to expectorate secretions from upper airways
using a huff cough technique.-'' Secretion clearance with
PEP therapy has proven comparable to other clearance
methods in cystic fibrosis patients. 2* Active exhalation
through a resister with variable settings will generate pos-
itive expiratory pressures between 10 and 20 cm water
pressure. PEP therapy offers the advantage of low cost,
simplicity, effective secretion removal, ease of patient use,
and ease of self-administration. 22 Researchers are now fo-
cusing on extended use beyond cystic fibrosis. Early in-
dications are that PEP is effective as pulmonary hygiene
therapy after lung volume reduction surgery.-^ This may
be an area where further research is indicated, for the
potential benefit of COPD patients with secretion manage-
ment problems.

The Flutter is another handheld device designed to fa-
cilitate mucus clearance in patients with hypersecretory
lung disease. 2* The Flutter results in oscillation of expira-
tory pressure, which vibrates airway walls, accelerates air
flow, and moves secretions up the airways. It is portable
and inexpensive. Further studies are needed to determine
the efficacy in patients with chronic bronchitis and bron-
chiectasis.

Limitations to the use of PEP therapy in terminally ill
patients may be more related to patient factors than equip-
ment design. The patient needs to be able to exhale for a

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Respiratory Care • Novemeber 2000 Vol 45 No 1 1

Managing Secretions in Dying Patients

minimum of 4 seconds and must be able to repeat the
procedure multiple times on a regular basis, 2-4 times
daily. Although not difficult for most patients with COPD,
very debilitated patients might find this procedure and
forceful coughing to be too exhausting. As with any ther-
apy, efficacy needs to be monitored. If PEP therapy does
not increase sputum production in a patient who has been
expectorating > 30 mL per day without PEP, the therapy
may not be indicated.-'

Intrapulmonary Percussive Ventilation. Relatively
new to the secretion control arsenal, intrapulmonary per-
cussive ventilation was approved by the United States Food
and Drug Administration in 1993. A pneumatic device
delivers pressurized gas minibursts at 100-225 cycles per
minute via a mouthpiece to the patient.^- Research con-
ducted with cystic fibrosis patients looks promising. In-
trapulmonary percussive ventilation was found to be as
effective as chest physiotherapy and aerosol therapy in
improving short-term pulmonary function tests and en-
hancing sputum production. ^'^

Mobilization and Exercise. When possible for patients
with terminal disease, mobilization and exercise are indis-
putably beneficial as secretion control mechanisms. Any
measure of activity is better than none. Many illnesses,
however, and altered states of consciousness preclude mo-
bilization. If properly instructed, family caregivers can as-
sist with passive range of motion exercises. If patients are
bedfast, their position will need to be changed as often as
every two hours.

Pharmacologic Interventions

Many drugs have been used, with varying degrees of
success, in the quest to facilitate mucociliary clearance
(Table 1). The aerosolized agents used widely in respira-
tory care that may enhance mucociliary clearance are beta
(/3) agonists, methylxanthines, corticosteroids, and muco-
lytics. /3 agonists, methylxanthines, and corticosteroids all
effectively increase airway diameter either by bronchodi-
lation or reduction of airway inflammation. The increase

Table 1 . Drugs that Affect Mucociliary Clearance

Enhance Clearance

Inhibit Clearance

P agonists

Methylxanthines

Corticosteroids

Mucolytics

Guaifenesin

Adapted from Reference 32.

Benzodiazepines

Barbiturates

Opiates

General anesthesia

Respiratory Care • Novemeber 2000 Vol 45 No 1 1

in airway diameter, coupled with an effective cough, will
move any secretions that may be present in the airways.
Mucolytics were developed to reduce the viscosity of mu-
cus to further facilitate secretion removal. While acetyl-
cysteine (Mucomyst) was touted in 1962 to be the "most
effective agent for liquefaction of secretions, "3' it was
subsequently found be related to bronchoconstriction in
some asthmatics. Two additional drugs noted by Wan-
ner et al that are used in secretion control are guaifen-
esin and amiloride.32

P Agonists

There are many individual j3 agonist drugs available for
use, either as solutions delivered via nebulizer, aerosolized
by use of a metered-dose inhaler, or delivered with a dry
powder inhaler.

Aerosolized j3 agonists afford a measure of relief by
their bronchodilating effect on airway smooth muscle. Al-
though /3 agonists have no direct mucolytic activity, an
increased airway radius coupled with an effective cough
can serve to remove secretions.

The choice of drug and dose selected by the physician is
usually based on disease process, the presence of comor-
bid conditions, and past efficacy of the drug. The RT
recommends the mode of delivery in many institutions.
Metered-dose inhalers and dry powder inhalers are porta-
ble and compact and offer short treatment times. What
must be taken into consideration, though, is the complex
actuation-breathing coordination required for most me-
tered-dose inhaler use and the need for high inspiratory
flow with current dry powder inhalers. Hand-held nebu-
lizers are cumbersome and more time-consuming. In pal-
liative care, however, they may be advantageous for a
number of reasons. Most j3 agonist drugs can be delivered
via hand-held nebulizer. Minimal coordination for inhala-
tion is required when using a nebulizer. Small-volume
nebulizers are useful in very old patients, debilitated pa-
tients, and in patients with acute distress. Lastly, delivery
of drugs via nebulization is effective even when the patient
can only generate low inspiratory flow or volume.'-^

Another less scientific advantage of drug delivery via
nebulizer is increased patient-therapist contact time. The
end of life can be isolating and frightening for patients.
RTs can provide comfort to individual patients by giving
them a few extra minutes. A gentle touch on the hand or
shoulder during the treatment can enhance the therapeutic
effectiveness of the pharmacologic agent (Fig. 1 ).

Methylxanthines

Theophylline is a methylxanthine derivative occasion-
ally used in patients with obstructive lung disease. Avail-
able in many oral forms, it is a mild bronchodilator. Ad-

1359

Managing Secretions in Dying Patients

Fig. 1. The value of touch in respiratory care. (From Sorenson H,
Thorson JA. Geriatric respiratory care. Albany NY: Delmar; 1998,
with permission.)

ditionally, theophylline may improve ventilatory flow and
strengthen the contraction of the diaphragm. Combined,
these drug actions may facilitate secretion removal.

When patients are being treated for certain comorbid
conditions or are elderly, theophylline may not be consid-
ered a drug of choice. The adverse drug reactions, neces-
sary precautions for theophylline administration, and in-
compatibility with other drugs have lessened the status of
theophylline in treating COPD.

Corticosteroids

Use of corticosteroids as anti-inflammatory agents in
treating COPD is becoming controversial. Barnes, in ad-
dressing novel approaches for treatment of COPD, dis-
cusses the disappointment of corticosteroid therapy.^'' Re-
searchers looking at the inhibitory effect of inhaled and
oral corticosteroids on neutrophil counts, granule proteins,
or inflammatory cytokines in induced sputum of COPD
patients showed no significant activity.^' This was in sharp

contrast to the ability of corticosteroids in reducing eosin-
ophil counts in induced sputum of asthma patients. ^^ Re-
gardless, if corticosteroids reduce airway edema, thus in-
creasing airway diameter, they may allow for more effective
secretion removal. A 1998 study of inhaled fluticasone
(500 /Lig, bid) versus placebo in patients with bronchiec-
tasis showed a significant (p < 0.05) decrease in sputum
leukocyte density. Although post-study pulmonary func-
tion tests showed no significant difference in spirometry
(p < 0.05), no adverse side effects were noted in either
group."'

Quality of life issues have also been explored in con-
nection with the use of corticosteroids. A limited study of
21 patients with stable COPD demonstrated the efficacy of
a two-week course of oral prednisone. Ambulatory oxygen
saturations after the course of prednisone were improved
to the degree that many patients no longer needed portable
oxygen. '■^ Further investigations will probably be conducted
to examine the use of corticosteroids in COPD.

Mucolytics

RTs welcomed the development of drugs that reduce the
viscosity of tenacious secretions. Cysteine derivatives such
as N-acetylcysteine, methylcysteine, and carbocysteine
were effective in reducing the viscosity of mucus in vitro. ^^
Of those three, only N-acetylcysteine, also known as Mu-
comyst, was found to be effective in vivo. Caution, how-
ever, must be used when administering Mucomyst. In ad-
dition to increasing the incidence of bronchospasm in
asthmatics, Mucomyst can also greatly increase the vol-
ume of liquefied pulmonary secretions. Debilitated pa-
tients without an effective cough mechanism are at risk for
aspiration or choking on excessive secretions.

DNase (Pulmozyme) is a newer mucokinetic agent that
is effective in reducing sputum viscosity. Although aero-
solized recombinant human DNase appears to be effective
as a mucolytic in cystic fibrosis patients, it has not shown
comparable efficacy in COPD patients.-''* Pulmozyme,
while being potentially useful, is also expensive. This may
limit its use in palliafive care.

Guaifenesin

Expectorants such as guaifenesin actually increase the
amount of fluid in the upper airway. Guaifenesin enhances
the output of secretions in the respiratory tract by reducing
the surface tension and adhesiveness of mucus.'** This ac-
tion liquefies the mucus, reduces viscosity, and allows for
easierexpectoration. The effectiveness of guaifenesin, how-
ever, is enhanced by a strong cough mechanism. Addition-
ally, it is recommended that expectorants, for maximal
efficacy, be taken with a full glass of water. Terminally ill

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Respiratory Care • Novemeber 2000 Vol 45 No 11

Managing Secretions in Dying Patients

patients might find it difficult to comply with both of these
conditions.

Drugs That Inhibit Mucus Clearance

A brief mention of pharmacologic agents that inhibit mu-
cus clearance, such as benzodiazepines, barbiturates, and opi-
ates is warranted, along with a justification for their use.

In palliative care the "rule of double effect" remains
important when used properly. This rule states that an
action having two effects, one good and one bad, is per-
missible if the following 5 conditions are fulfilled;

• The act itself is good or at least morally neutral (eg,
giving morphine for pain).

• Only the good effect, not the bad effect is intended.

• The good effect is not achieved through the bad effect
(eg, pain relief does not depend on hastening death).

• There is no alternative way to attain the good effect.

• There is a proportionately grave reason for running the
risk (eg, relief of intolerable pain).^'

Benzodiazepines

This class of drugs includes agents such as Valium,
Xanax, and Ativan. They are useful as sedatives or anxi-
olytic drugs. Although generally considered safe, they can
lead to drying of the oral mucosa, making secretion re-
moval more challenging. If patients are losing sleep or are
unduly anxious though, benzodiazepines might be indi-
cated.

of opiates, rarely if ever suffer respiratory depression or
addiction if doses are titrated properly."*"

Secretion Control in Palliative Care

A number of management strategies have been provided
in this article for reducing the amount and nature of se-
cretions. Many of these strategies are applicable to pallia-
tive care and some are not particularly useful.

In palliative care, everything starts with the patient, in-
cluding every aspect of symptom management. To accom-
plish this effectively there must be communication, not
only between the patient and health care professional but
also between the health care professional and family and
within the health care team. When communication is task-
oriented and related to aspects of the patient situation that
can impact care, it is effective.

Managing large volumes of secretions is not always
possible in terminally ill patients. Even when utilizing
pharmacologic agents and mechanical devices, the patient
may, at best, feel relief for only a short amount of time. It
is important at this juncture to educate the family and,
when possible, the patient. Patients receiving palliative
care are especially vulnerable and may be susceptible to
any suggestions. Helpful suggestions might include situ-
ating the patient in a comfortable, propped-up position,
provision of a Yankauer suction device for the patient/
family, and offering ice chips as desired. Suggestions of
"new treatments that may be discovered any day" might
not be helpful.

Barbiturates

Death Rattle

Much less frequently prescribed are agents in a class of
sedative-hypnotic drugs known as barbiturates. Benzodi-
azepines, because of their wider margin of safety, have
replaced barbiturates in many situations. Barbiturates re-
main effective as anticonvulsant agents and for induction
of anesthesia. Unfortunately, barbiturates can result in hy-
poventilation, respiratory depression, laryngospasm, and
bronchospasm.3*

Opiates

Morphine sulfate is a commonly used opioid agonist in
palliative care. It has a fairly rapid onset and can provide
pain relief for hours. Morphine sulfate can also produce a
measure of respiratory depression and suppression of the
central cough reflex. Both would seem contradictory to
effective secretion control, but when the patient is in se-
vere pain, comfort needs to be provided. A gradual upward
titration of morphine can provide pain relief with fewer
respiratory adverse effects. It has been demonstrated clin-
ically that patients with severe pain, receiving large doses

In a patient's final hour, when he or she may be semi-
conscious or deeply unconscious, the patient may be un-
able to swallow or expectorate mucus. The secretions that
collect in the back of the throat cause a partial loose air-
way obstruction. The sound created by breathing through
this obstruction is known as the "death rattle." Mercifully,
most patients are not aware of this noise, but it may cause
distress to relatives or patients nearby."" The death rattle
can also be distressing and frustrating to respiratory ther-
apists and other health care providers. In some cases there
may be a temptation to recommend intubation if the air-
way is perceived to be severely compromised. In other
instances, the thought of taking actions to hasten death,
although ethically problematic, may arise.

What is most important, at this juncture, is education.
Advance preparation is essential. It is important to discuss
the cause of this noise with family and friends to let them
know it is not unexpected at the end of life. Therapists
should also understand and relay to the family and friends
that at this point suctioning may actually be more distress-
ful for the patient. In these situations, the use of an anti-

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Managing Secretions in Dying Patients

sialagogue, such as hyoscine or oral atropine, may be more
beneficial and more in keeping with the concept of pallia-
tive care.

End of Life

Spiritual beliefs and religious convictions can ease end-
of-life issues for many patients and families. While it is
outside the realm of health care providers to offer guid-
ance, an acceptance of the patient's rights regarding his or
her beliefs and a respectful attitude can give comfort in a
difficult situation.

Summary

The goals of palliative care are fairly straightforward — to
provide comfort and symptom relief to patients who have
been diagnosed with a life-ending disease. Respiratory ter-
minal care and respiratory symptom management provided
in a thoughtful and consistent manner can reduce fear and
reduce anxiety. RTs can aid the patient and the family by
helping them understand the disease progression and by
providing an environment more conducive to the final goal
of a "good death."

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GS, Niederman MS. Acute exacerbation of COPD: factors associ-
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14. Grossman RF. The value of antibiotics and the outcomes of antibi-
otic therapy in exacerbation of COPD. Chest I998;l 13:249S-255S.

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20. Peruzzi WT, Smith B. Bronchial hygiene therapy. Crit Care Clin
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28. Konstan MW, Stem RC, Doershuk CF. Efficacy of the Flutter device
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31. Gallon AM. Evaluation of nebulized acetylcysteine and normal sa-
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Thorax 1996;5 1:429-^32.

32. Wanner A, Salathe M, O'Riordan TG. Mucociliary clearance in the
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34. Barnes PJ. Novel approaches and targets for treatment of chronic
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Managing Secretions in Dying Patients

40. O'Brian CP. Drug addiction and drug abuse. In: Goodman AG, et al,
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Discussion

Manning: I wonder what you think about the use of
nasotracheal suctioning as palliative care. If the focus of
palliative care is to make people feel better — and I'm para-
phrasing, but I think that's the gist of it — I'm not sure,
based on my own experience, whether I've ever made
someone feel better through nasotracheal suctioning. I've
made a lot of nurses, physicians, and residents feel better,
and I've made a lot of noises go away, but I wonder
whether people truly feel better after nasotracheal suction-
ing.

And I wonder whether it reflects a failure to recognize
the focus of palliative care. It seems to me that by the time
somebody is in a state that he can't control secretions, he
is probably in the advanced stages of illness and probably
close to dying. I wonder whether proceeding with other
comfort measures, such as opiates and other things that we
may hear about, might be the order of the day rather than
nasotracheal suctioning.

Sorenson: I would agree with you totally. When you
have to call another therapist in to hold the patient's hands
down so you can do the nasotracheal suctioning, which
you very often have to do because they're going to fight it,
you really wonder what you are doing. The nasal trumpet
seems to help because you're only putting it in once and
then you've got the pathway and patients are a little more
comfortable with that. The noises, the rattle in the back of
the throat, is probably more alarming to the family and to
the health care providers than it is to the patients them-
selves. Sometimes getting them up in a high Fowler's
position and propping them up is about as effective as
invasive therapy, so I would absolutely agree with you.

Manning: Also, any relief (and we may not be using the
term relief properly) tends to be short-lived, and with pa-
tients who have secretion problems it tends to be an on-
going issue and they need repeated measures to deal with
it.

Sorenson: And I don't know in palliative care if phar-
macotherapy might not be a better choice.

Fins: Do you have any strategies for dealing with fam-
ilies when there is a death rattle, when the patient is prob-
ably not experiencing the distress but the family is really

upset about what's going on? In your own experience,
have you any strategies for that kind of intervention?

Sorenson: In my own experience, if I can calm the
family down, I can calm the patient down, because very
often the patient is responding to the stress of the family in
that situation, I think you have to be really truthful with the
family and say "We're coming to the end now. Would you
like to hold their hand? Would you like to talk to them?"
Getting really aggressive at that point is not necessary.

Absolutely turn the pulse oximeter monitors off. There's
no need for monitors or alarms going off, because you're
not going to respond to those anyway. Alarms are really
distressing for the family. They are likely to say "Do some-
thing! Do something!" You almost feel obligated to do
something, but if they sit there and watch you do the
suctioning procedure once, they won't ask you to do it
again.

I think sometimes it's a mistake to ask the family to
leave the room. When they leave, they don't see the trauma
that their family member is going through. I guess my
response would be to try to be honest with the family when
the death rattle is present: tell them that the end is near.
Have the family hold their hand and give them permission
to go.

Rubenfeld: I think this is the key point. As we were
structuring this, it wasn't clear to me until after listening to
your talk and to the house questions that, and I wrote the
same thing down, that it may, in fact, be that the most
important aspect of secretion management for palliative
care either in the intensive care unit or for dying pulmo-
nary patients is an educational issue for the staff and for
the family. It may, in fact, be the secretion management
issue. I really think that the focus for the manuscript for
this discussion ought to be about those sorts of strategies.
This is an area where we have a lot to learn from pal-
liative care practitioners who routinely care for patients
who die without endotracheal tubes, I also think this is the
issue around which you called the extubation quandary.
It's the sensitivity that respiratory therapists and pulmo-
nologists have to that gurgly sound, and the failure to
recognize it as just being part of the dying process. You
were right on point, and I either ask you for the manu-
script, or for right now, to continue to think of ways to be
educational and prescriptive to all of our colleagues about
the natural parts of dying and the noises that people make
as they die.

Sorenson: I think it's an education for us, too. There are
a lot of young therapists out there who are very aggressive
and want to fix everything, "I hear secretions: why can't I
go get them?" Well, let's look at what the expense is to the
patient before we start getting aggressive.

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Managing Secretions in Dying Patients

Curtis: I think, too, for physicians
that it is easier to write for scopol-
amine patch or another drug than to
educate the family and the staff. So
I think the reflex is to do what is
easy, and maybe that is not the best
thing.

Viles: In my search for strategies to
handle some of those situations, one
quick indicator for the therapist— at
the point where it's clear that this is a
patient who's dying — is that for any
procedure where you would have the

family leave the room to really exam-
ine the impetus behind that. It may be
discomfort on the part of the staff, par-
ticularly with respiratory therapists
who often don't get the benefit of be-
ing allowed to take part in a lot of that
process, to have them sort of swoop in
not only breeds a lot of contempt from
the family, but it makes the therapist
feel they are there to do to the patient
rather than to do for the patient.

Sorenson: I've been in a situation
a couple of times where we've had

to do a procedure, even if it was just
an aerosol treatment, and the family
says "We're kind of tired, can we
take a break?" My response was
"Yes, go down to the cafeteria and
have a cup of coffee." Unfortunately
their family member died while they
were gone. I don't routinely offer that
option anymore. We don't always
know the end is coming, but asking
the family members to leave the room
in that situation is something I don't
do anymore. Unfortunately, I learned
the hard way.

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Respiratory Care • Novemeber 2000 Vol 45 No 1 1

Role of Pulmonary Rehabilitation in Palliative Care

John E Heffner MD

Introduction

Rationale for an End-of-Life Curriculum

Opportunities in Pulmonary Rehabilitation

for Discussion about Palliative Care
Selecting Patients in Pulmonary Rehabilitation

for Advance Care Planning Discussions
Goals of Advance Care Planning in Pulmonary Rehabilitation
Educating Patients about Palliative Care
Summary

[Respir Care 2000;45(1 1): 1365-1371] Key words: rehabilitation, education,
end-of-Ufe, death, dying, advance planning, ethics.

Introduction

Most patients enrolled in pulmonary rehabilitation pro-
grams have advanced lung disease and often face difficult
ethical dilemmas and decisions regarding palliative care
during the course of their diseases. Sudden, life-threaten-
ing episodes of acute respiratory failure thrust patients and
their families into deliberations about the appropriateness
of life-supportive care for which they are often poorly
prepared. Life-supportive care may provide opportunities
for some patients to recover to their baseline function and
return to enjoyable and productive lives. For other patients
with severe lung disease, aggressive respiratory care may
offer negligible hopes for recovery or return patients to an
intolerable functional level and only forestall the dying
process. For such patients, palliation rather than cure be-
comes the goal of therapy.

Physicians are often asked to assist patients in deciding
between life-supportive or palliative care during episodes
of respiratory failure by providing estimates of the prob-
ability of survival or successful weaning from mechan-
ical ventilation. Unfortunately, few data are available to

John E Heffner MD is affiliated with the Department of Medicine, Med-
ical University of South Carolina, Charleston, South Carolina.

A version of this paper was presented by Dr Heffiier during the Respiratory
Care Journal Conference, Palliative Respiratory Care, held May 19-21,
2000 in Cancun, Mexico.

Correspondence: John E Heffner MD, Department of Medicine. 96
Jonathan Lucas Street. Suite 812 CSB, PO Box 250623, Charleston SC
29425. E-mail: heffnerj@musc.edu.

aid physicians in predicting the likely outcome of acute
respiratory failure for an individual patient with chronic
lung disease (CLD).' Multiple studies indicate that pa-
tients hospitalized for exacerbation of chronic obstruc-
tive pulmonary disease (COPD) have a good overall
survival to hospital discharge, ranging from 66% to
94%. 2-" Among patients who require mechanical ven-
tilation, survival to discharge is lower but is still above
60%.'- '** However, no studies have identified reliable
predictors to identify the subset of patients who have a
poor likelihood of survival or regaining a good func-
tional status.' Consequently, patients with severe lung
disease deal with considerable uncertainties when de-
liberating about their end-of-life care.

These uncertainties underlie the ethical dilemmas and
difficult decisions about palliative care faced by patients
with advanced lung disease during episodes of respiratory
failure. The ethical dilemmas usually focus on the appro-
priateness of withholding or withdrawing life-supportive
care. Difficulties in considering palliative care center on
the risks of initiating palliative interventions that may re-
lieve suffering but lower the likelihood of a successful
recovery for patients with uncertain clinical prognoses.

Considering that COPD is now the fourth leading cause
of death in the United States," it is remarkable that pul-
monary rehabilitation curricula have not included more
patient education about the difficult end-of-life decisions
patients with advanced lung disease may eventually face.
A recent survey found that fewer than 10% of pulmonary
rehabilitation programs in the United States provided ed-
ucational information on end-of-life topics. -°

Respiratory Care • November 2000 Vol 45 No 11

1365

Role of Pulmonary Rehabilitation in Palluiitive Care

102

100

Fig. 1 . Willingness of patients to undergo mechanical ventilation
with different baseline health statuses. The numbers above each
bar signify the number of patients who would accept mechanical
ventilation in each baseline health condition. The baseline health
conditions were as follows: A = becoming more forgetful, B = too
forgetful to participate in hobbies, C = unable to leave the home,
D = unable to walk without assistance, E = unable to eat without
assistance, F = experiencing constant pain. (Adapted from Ref-
erence 23.)

Fig. 2. Willingness of patients to undergo mechanical ventilation
with different anticipated survival outcomes. The numbers above
each bar indicate the number of patients who would accept me-
chanical ventilation at each probability of survival. The survival
probabilities were as follows: A = a very good likelihood of sur-
vival, B = a quite reasonable likelihood, C = a fair likelihood, D =
a poor likelihood, E = a very poor likelihood. F = subjects who
would not accept life support regardless of the likelihood of sur-
vival. (Adapted from Reference 23.)

This article will discuss opportunities provided by pul-
monary rehabilitation to assist patients with chronic lung
conditions as they progress toward the terminal stages of
their diseases.

Rationale for an End-of-Life Curriculum

Considerable societal and legal opinion supports pa-
tients' rights to refuse medical care, even when such re-
fusal would result in death, and to request palliative care,
even if such care may accelerate their demise. ^'^^ A recent
survey study indicates that > 80% of patients enrolled in
pulmonary rehabilitation programs would choose to exer-
cise these rights by directing their own end-of-life care.^"*

In order to make valid end-of-life decisions, patients
must learn from their physicians the unique aspects of
their clinical conditions and the nature of life-supportive
and palliative care. Without this information, patients with
general health conditions have been shown to have an
inflated estimation of the value of resuscitative care.^'* Ge-
riatric patients express less of a willingness to undergo
cardiopulmonary resuscitation when presented with real-
istic estimates of the probability of survival. ^''-^^ Similarly,
CLD patients lower their interests in mechanical ventila-
tion as their baseline health status declines, the probability
of their survival diminishes, and the likelihood of a good
functional recovery decreases^^ (Figs. 1-3). It is difficult,
therefore, for patients to voice their end-of-life wishes
unless they understand the available interventions and con-
sequences of alternatives of care.

Unfortunately, < 19% of CLD patients enrolled in pul-
monary rehabilitation programs have had a discussion with
their physicians about end-of-life care.^^ Although most

ABCDEFGH I J

Fig. 3. Willingness of patients to undergo mechanical ventilation
with different health statuses after recovery. The numbers above
each bar indicate the number of patients who would accept me-
chanical ventilation in each post-recovery health condition. The
health conditions after recovery were as follows: A = as well as
before the illness, B = more forgetful, C = more tired, D = more
breathless, E = unable to participate in hobbies, F = unable to
leave the house, G = unable to walk without assistance, H =
unable to eat without assistance, I = too confused to interact with
family members, J = experiencing constant pain. (Adapted from
Reference 23.)

CLD patients have made decisions about the acceptability
of life-supportive interventions, < 15% believe that their
wishes are understood by their physicians.^^

It remains uncertain as to why such a negligible dia-
logue exists between physicians and their CLD patients
about end-of-life care. Most physicians wait for their pa-
tients to ask for information about advance planning be-
fore presenting information on this topic. ^'^ Unfortunately,
CLD patients tend to wait for their physicians to bring up
topics related to end-of-life care.^' The resulting deadlock
in communication leaves patients with progressive lung

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Respiratory Care • November 2000 Vol 45 No 1 1

Role of Pulmonary Rehabilitation in Palliative Care

disease uninformed about the events they may face during
an episode of respiratory failure and the life-supportive
and palliative interventions they may be called upon to
accept or refuse.

Patient reluctance to engage in end-of-life discussions
does not appear to be a barrier to end-of-life discus-
sions.""-3' Nearly 90% of patients with advanced lung
disease enrolled in pulmonary rehabilitation programs ex-
press an interest in learning more about advance direc-
tives, and nearly 70% would like explicit information about
life-supportive care.-"*

Physician barriers to engaging their patients in discus-
sions about palliative care have not been extensively
examined. Suggested barriers include limited time during
patient encounters,^- physicians' misperceptions that they al-
ready understand their patients' treatment preferences,^'-^^
and physician anxiety with discussions about death. ^^ It
has recently been demonstrated that pulmonary physicians
who harbor discomforts about end-of-life care are less
willing to initiate early discussions about terminal care
with their COPD patients, compared to physicians with
less death anxiety. ^^

Opportunities in Pulmonary Rehabilitation for
Discussion about Palliative Care

Physician reluctance to engage their patients in end-of-
life discussions has spawned interest in educating patients
to become better health care consumers and to initiate
these discussions with their physicians. Patient expecta-
tions and requests for treatment interventions are some of
the most potent influences for altering provider behavior.^''
It appears that attendance in pulmonary rehabilitation pro-
vides a potentially valuable forum for this education. The
effectiveness of a pulmonary rehabilitation educational pro-
gram on end-of-life care would depend on the willingness
of patients to participate in the curriculum and to receive
information regarding advance planning from nonphysi-
cian rehabilitation educators.

We have previously demonstrated that patients are will-
ing to receive this information in pulmonary rehabilita-
tion. ^3 CLD patients identified pulmonary rehabilitation
educators, lawyers, and physicians as the preferred sources
of information on end-of-life care (Table 1 ). Physicians
and pulmonary rehabilitation educators were considered in
this study the most desirable sources of information on
life-supportive care.

Little data demonstrate, however, that advance care plan-
ning curricula administered in pulmonary rehabilitation
would be effective in producing the desired outcomes of
better patient understanding, more informed decision-
making at the end of life, and more meaningful patient-
physician dialogue. One recent study, however, determined
that an educational program in pulmonary rehabilitation

Table 1 . Order of Preferences* for Sources of Information on
Advance Directives and Life Support Interventions
Expressed by Patients with Chronic Lung Disease

Infonnation Source

Preference Rating
Advance Directives

Preference Rating
Life-Support

Pulmonary Rehabilitation

Lawyer

Physician

Family

Reading

Community Class

Clergy

c ( 1 ) to least desirable (3). NA =

♦Preference ratings listed as most desirabli

- not assessed.

(Modified from Reference 23.)

increased the proportion of patients who completed writ-
ten advance directives from 34% to 86%.^^ A smaller ef-
fect was noted in the proportion of patients who completed
discussions with their physicians about end-of-life care
(22% to 58%). These findings support the value of ad-
vance care planning within pulmonary rehabilitation pro-
grams.

Some directors of pulmonary rehabilitation have voiced
concern that education of patients with advanced lung dis-
ease about end-of-life issues may provoke unnecessary
anxiety and concern.-" Available studies, however, indi-
cate that advance care planning does not produce exces-
sive anxiety, depression, or a sense of hopelessness. ^'-''^
Older patients actually demonstrate a decrease in mea-
sured anxiety and depression scores after they participate
in end-of-life discussions with their physicians.'''' This pos-
itive effect may result from the ability of these discussions
to provide patients with a sense of control over their health
care and means to avoid prolonged illnesses before their
deaths.'*'*

Little data address the psychological impact of end-of-
life education for patients with chronic pulmonary disor-
ders. We have demonstrated, however, that > 88% of
patients with advanced lung disease enrolled in pulmonary
rehabilitation programs voice a desire for more informa-
tion about end-of-life care.^^ More than 99% of these pa-
tients state that these discussions would not provoke an
unacceptable degree of anxiety.-''

Pulmonary rehabilitation fulfills the need to provide
timely education about advance planning in an ambulatory
setting. Patients with advanced lung disease indicate that
they prefer these discussions to occur during periods of
stable health.-^ Less than 20% of patients wish to defer
advance planning discussion until an episode of acute re-
spiratory failure creates a need for urgent considerations of
life-supportive care.^^ Unfortunately, most studies indicate
that advance care planning is usually delayed until patients
are hospitalized and have lost their decision-making ca-

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Role of Pulmonary Rehabilitation in Palliative Care

pacity.^*"*""* Only 20% of hospitalized patients with do-
not-resuscitate orders have had an opportunity to partici-
pate in end-of-life discussions.*'

Pulmonary rehabilitation educators appear receptive to
introducing educational content on end-of-life topics. Al-
though < 10% presently discuss advance planning, > 70%
of nonphysician directors indicate a willingness to do so if
an acceptable curriculum were available. ^o

Selecting Patients in Pulmonary Rehabilitation for
Advance Care Planning Discussions

Educational programs on terminal care within pulmo-
nary rehabilitation need to respect the reluctance of some
patients to participate. Although most patients with ad-
vanced lung disease would like to participate in end-of-life
discussions, up to 4% of patients do not want to, and want
their caregivers and family members to make all end-of-
life decisions.-'' Also, a small proportion (1%) of patients
with chronic pulmonary disorders would consider end-of-
life discussions too anxiety-provoking to pursue.-^ Differ-
ent ethnic groups may have varying interests in engaging
in discussions about terminal care."*'"'''

Patients can be invited to participate in a manner that
allows them to decline without any personal discomfort.
Advance care planning topics can be introduced during
discussion of other health care issues, such as health care
screening, disease prevention, and disease management
programs. Patients can be presented with a rationale and a
question: "Patients with lung disorders can sometimes ex-
perience episodes of respiratory complications that may
require aggressive life-supportive care or comfort mea-
sures if recovery appears unlikely. Your physician would
need to understand your wishes regarding what care you
would want in these situations. Would you be willing to
participate in an educational program that would help you
and your family make decisions about your care if you
become severely ill?"

This approach allows patients who appear reluctant to
participate to avoid these discussions. Such patients can
receive periodic invitations after they become more adapted
to their lung conditions. Also, some patients who express
an initial anxiety about end-of-life discussions may be
more willing to participate after they receive reading ma-
terials on advance planning.^^.^s

Goals of Advance Care Planning in Pulmonary
Rehabilitation

Educational programs for advance care planning have
traditionally focused on assisting patients in completing
formal written advance directives, living wills, and dura-
ble powers of attorney for health care. Curricula in pul-
monary rehabilitation should include components that as-

sist patients with the completion of meaningful advance
directives. It should be recognized, however, that written
advance directives cannot anticipate all of the future med-
ical events that patients may experience and cannot relate
all of their treatment preferences. Consequently, the Amer-
ican Thoracic Society recommends tailoring advance di-
rectives to a patient's underlying medical condition and
toward the health events they are likely to face.22 CLD
presents a high risk for acute episodes of respiratory fail-
ure and an eventual need to consider the value of intuba-
tion with mechanical ventilation.-*'^ Educators in pulmo-
nary rehabilitation can include programs that discuss the
life-supportive care anticipated to be necessary and the
common end-of-life scenarios commonly faced by patients
with chronic respiratory disease.

Unfortunately, living wills and durable powers of attor-
ney for health care by themselves have fallen short of their
intended goals of providing reliable descriptions of pa-
tients' end-of-life treatment wishes that affect the terminal
care they receive.* Contemporary discussions of end-of-
life planning have shifted our thinking toward understand-
ing how patients, rather than their caregivers, conceptual-
ize advance care planning. ""'

Caregivers often conceptualize advance care planning
as an operational tool that provides information that assists
physicians in selecting among life-sustaining interventions
when patients have lost their decision-making capacity. In
contrast, patients perceive advance directives as only one
of the several resources available to them for fulfilling
their terminal care goals. These goals transcend the usual
concepts of choices among life-supportive treatments and
include thoughts about preparing for death, achieving a
sense of control over their lives, and strengthening per-
sonal relationships with family and friends.^'

Patient concepts about advance planning, therefore, are
less operationally oriented toward health care interven-
tions and more directed toward deep-seated psychological
needs. Educational programs within pulmonary rehabilita-
tion may encourage more patient-physician communica-
tion but should respect the greater need for more commu-
nication between family members. Family communication
can fortify family relationships and offer mutual support
as patients contemplate their end-of-life care.

An educational curriculum in pulmonary rehabilitation
should involve families in advance care planning and help
initiate a dialogue between patients and their families about
prognosis, the nature of life-supportive interventions, and
the goals of palliative care. Educators can address patients'
and family needs for additional resources to enrich their
discussions and provide specific information tailored to
patients' pulmonary conditions. Educators can also respond
to patients' questions about end-of-life concerns. During
patients' progression through pulmonary rehabilitation, ed-
ucators can periodically review their patients' advance care

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Respiratory Care • November 2000 Vol 45 No 11

Role of Pulmonary Rehabilitation in Palliative Care

Table 2, Available Palliative Care Interventions for Patients with Advanced Lung Disease at the End of Life

Patient Problem

Intervention

Effects

Dyspnea

Coughing

Terminal airway secretions,
patient gurgling

Supplemental oxygen

A cold stream of air across a patient's face
from a fan

Noninvasive positive pressure ventilation
with a face mask

Opioids

Benzodiazepines
Chlorpromazine

Opioids

Nebulized anesthetics

Anticholinergic agents

Offers marginal benefits for relieving dyspnea.'^
May diminish dyspnea and improve comfort.'*-"

Occasional patients may have improved comfort. May benefit
patients who choose to avoid opioids for dyspnea relief so as to
maintain mentation.'*

Most effective pharmacologic approach for dyspnea relief.

Dose titration allows dyspnea relief May depress ventilatory drive
and accelerate death, which is ethically and legally acceptable if
intention is to relieve dyspnea and an accelerated death is an
unintended effect. Can provide terminal sedation for patients
withdrawn from mechanical ventilation.'''

Usually avoided until the last days of life because they cloud
consciousness. Less effective for dyspnea relief than opioids.'^

May relieve dyspnea that is unresponsive to opioids and
benzodiazepines.*"

Cough relief
Cough relief'''

May relieve secretions but produce discomfort from oral dryness.
Probably more comfortable for terminal patients than nasopharyngeal
suctioning.

Table 3. Criteria for Selecting Patients with Lung Disease for
Hospice Services

I. Severe chronic lung disease as shown by:

A. Disabling resting dyspnea that is poorly responsive or
unresponsive to bronchodilators and causes decreased functional
activity (eg. bed-to-chair existence) often exacerbated by other
debilitating symptoms such as fatigue and cough.
Post-bronchodilator FEV, < 30% of predicted is helpful
evidence of severity, but is not required.

B. Progressive disease:

1. Increasing hospitalizations or visits to the emergency
department for acute exacerbations of respiratory condition.

2. Decrea.se in FEV, of > 40 mL per year supports hospice need,
but is not required.

II. Presence of cor pulmonale or right heart failure unrelated to
cardiac disease

Cor pulmonale documented by:

1. Echocardiography

2. Electrocardiogram

3. Chest radiograph

4. Physical signs of right heart failure
Resting hypoxemia on supplemental oxygen:

A. Pq, £ 55 mm Hg on supplemental oxygen

B. Oxygen saturation s 88% on supplemental oxygen
Hypercapnia: P^-o, — 50 mm Hg

Progressive weight loss > 10% of body weight over preceding 6
months
Resting tachycardia: heart rate > 100/min

III

IV.
V,

VI.

FEV) = forced expiratory volume in llie first second

P02 =^ arterial partial pressure of oxygen

Pco2 - arterial partial pressure of carbon dioxide

planning and obtain copies of written directives to ensure
that they reflect their patients' actual preferences, live val-
ues, and goals. 5'

Educating Patients about Palliative Care

Many patients with advanced lung disease will eventu-
ally progress in their disease and experience worsening
respiratory symptoms. If patients state in their advance
care planning that they wish to forego life-supportive care,
pulmonary rehabilitation educators can reassure and edu-
cate them about palliative care.*^ Survey studies indicate
that most pulmonary rehabilitation programs inform CLD
patients that their conditions are typically progressive.-"
Unfortunately, most programs do not educate patients about
palliative care and community resources for managing the
discomforts and problems that progressive respiratory dis-
eases eventually present.

Omitting information on palliative care in pulmonary
rehabilitation is unfortunate, considering that most CLD
patients have unspoken concerns about experiencing un-
controlled dyspnea as they die.-' This concern is not un-
founded in that severe dyspnea is a common symptom
experienced by patients dying from any cause. 5'' Addition-
ally, most of the COPD patients in the Study to Under-
stand Prognoses and Preferences for Outcomes and Risks
of Treatment (SUPPORT) suffered from dyspnea during
the last days of their lives.-'*-* CLD patients have an intimate

Respiratory Care • November 2000 Vol 45 No 11

1369

Role of Pulmonary Rehabilitation in Palliative Care

awareness and justified fear of the distress engendered by
unrelieved dyspnea.

A curriculum in pulmonary rehabilitation on palliative
care provides an opportunity to address the fears of suf-
fering at the end of life that CLD patients harbor. The
curriculum could review for patients and family members
the availability, purpose, and relative role of palliative care
among other therapeutic interventions (Table 2). The cur-
riculum could also educate patients regarding community
resources available to patients at the end of life.

An educational curriculum in pulmonary rehabilitation
on palliative care should also include information on com-
munity resources for terminal patients with advanced lung
disease. Alternatives exist to hospitalization and home care
for patients. The National Hospice Organization offers
guidelines for selecting patients with nonmalignant diag-
noses for access to hospice care (Table 3).*^ Educators in
pulmonary rehabilitation can serve their patients at the end
of life by acting as contacts for patients and their families
regarding these community resources.

Summary

Educators in pulmonary rehabilitation can assist CLD
patients with their unfulfilled needs for more information
on advance care planning that include topics of palliative
care. With this information, patients have the greatest like-
lihood of approaching the end of life with a sense of con-
fidence that their treatment wishes and life goals will be
honored. More importantly, patients may be aided during
periods of stable health in their hopes of having their dying
experience strengthen their family relationships. To teach
patients about the progressive nature of CLD but to omit
the palliative opportunities available once the disease has
progressed leaves the glass half full.

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Discussion

Levy: John, help me out here. I'm
trying to understand why a rehab setting
would be a better place to have an end-
of-life discussion. Actually, I don't mean

better place, but why would the inci-
dence be higher there? For instance, in
my division, the same folks who attend
in the ICU [intensive care unit] and do
outpatient work attend at the rehab. And
those patients who are in rehab are iden-
tified in the clinic. So why would it be

happening in rehab and not be happen-
ing to the same group of patients in a
practice somewhere?

Heffner: When you say "same peo-
ple" do you mean physicians or do you
mean the nurses?

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Role of Pulmonary Rehabilitation in Palliative Care

Levy: Physicians.

Heffner: I think rehab is an oppor-
tunity to educate patients about their
diseases. Physicians are not good ed-
ucators. We're not trained to educate,
and now that we're even more increas-
ingly time-constrained we're becom-
ing even worse educators. If we look
at the literature on how well patients
and physicians focus on discussions
about end-of-life issues, we find that they
really don't have those discussions, it's
been stated in the literature that there's
a communication stand-off.'

Physicians are under the impression
that they shouldn't broach these is-
sues unless requested by patients. Pa-
tients are under the impression that
it's not pertinent and relevant to their
care at this stage of the disease to dis-
cuss end-of-life issues unless the phy-
sician brings up those issues for dis-
cussion, because patients trust their
physicians. We don't understand much
of the underpinnings of why physi-
cians don't talk to patients. So pulmo-
nary rehab offers an arena wherein an
educator who is a nonphysician
charged with educating patients with
chronic disease about all elements of
their condition that are relevant, per-
tinent, and helpful to improve their
outcomes can build end-of-life issues
into the curriculum.

REFERENCE

1. Heffner JE, Fahy B, Hilling L, Barbieri C.
Auitudes regarding advance directives
among patients in pulmonary rehabilitation.
Am J Respir Crit Care Med 1 996; 1 54: 1 735-
1740.

Levy: So you're really saying that
it's finding a place where those pa-
tients congregate, so to speak, and
identifying and paying for someone
whose responsibility it would be to
initiate those conversations and facil-
itate conversations between physicians
and patients. So it could be done if
you did it in a clinic or in an ICU. It's
a matter of identifying someone who
has the responsibility for doing that.

Heffner: That's part of it, Mitch,
and I think another part would be that
adult learning theories would suggest
that individuals need to be "primed"
to learn. When a patient with a chronic
disease goes to a physician's office,
they may not be primed to have dis-
cussion on end-of-life planning. They
might be primed to hear about adjust-
ments to their medications or about
their chest pain or their secretion con-
trol, but when a patient comes into
rehab, I believe they are primed to be
educated about their underlying dis-
ease, plus you've selected out a sub-
group that is motivated to participate
in education and to commit energies
toward expanding their well being.

Also, I think I heard you ask "Why
would it be better in rehab than else-
where?" My suggestion would be that
we look at these needs as having multi-
pronged resources that are not either/
or. Physicians have a responsibility
and obligation, within time constraints,
to talk about end-of-life issues with
their patients. But it doesn't mean that
a patient's attorney or bedside nurse
can't do it, too. We need a multi-
pronged approach to change our cul-
ture about death and dying. I think
rehab is an ideal component — but not
the sole site — for that education.

Levy: I agree with you. For us in
the ICU, a lot of patients who come in
without advance directives, if they sur-
vive, they leave with advance direc-
tives. So it's similar.

Curtis: I can just follow-up on that
point too. We just finished a qualita-
tive study looking at patients with end-
stage COPD, cancer, and AIDS, and
looking at what it was about physi-
cian care at the end of life that was
important to them, identifying the good
components of quality of care at the
end of life.' There were tremendous
similarities across the 3 disease groups
in terms of what they wantedfrom phy-
sicians at the end of life. The one thing
that stood out as being really different
in COPD was that patients told us they

didn't know they had a terminal dis-
ease, and in fact several patients told
us that the only place that they heard
that their disease was terminal was in
pulmonary rehab. They didn't hear that
from physicians: they heard it in pul-
monary rehab. So I think to support
what John is saying, not only is it an
important opportunity, it may actually
be where a lot of this education is
occurring, at least in end-stage COPD.

REFERENCE

1 . Curtis JR, Wenrich MD, Carline JD, Shan-
non SE, Ambrozy DM, Ramsey PG. Under-
standing physicians' skills at end-of-life care:
Perspectives of patients, families, and health
care workers. J Gen Intern Med 2000; 15:
(in press).

Sorenson: Your presentation was
great: a lot of very interesting statis-
tics. When I worked in a small com-
munity hospital we didn't have pul-
monary rehab. What I did have was a
support group, though, and the sup-
port group was composed of the pa-
tient and the family members. It was
non-threatening. I invited the physi-
cian to come to the support group and
talk to them about end-of-life issues
and about advance directives and de-
cision-making. I found that when the
family members were there with the
COPD patients, it was a more relaxed
setting. There were refreshments and
we could sit around and talk about
issues, and I think in that setting it
was pretty nonthreatening. There was
some good education that went on in
our support group. Pulmonary rehab
has done a very good job, but maybe
in pulmonary rehab we need to in-
clude the family members.

Heffner: That is another important
point. Why would end-of-life educa-
tion be better in one setting than an-
other? Well, pulmonary rehab has the
advantage of providing education in a
family-centered way, because it is not
just a patient decision at the end of
life. It is a family experience and fam-

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Role of Pulmonary Rehabilitation in Palliative Care

ilies share decision-making. So you
can educate patients within families.
I also find it very difficult to talk
about these issues in the office with a
patient, not because of any emotional
hang-ups about end-of-life issues but
because of the time constraints and
the necessities of what 1 need to get
done at that visit. Some primary care
programs now are having group visits
for which physicians can bill — they
get all their diabetics together and do
diabetic education, or all their asth-
matics together and discuss asthma
care. Perhaps rehab allows a forum
where patients can come and discuss
end of life with their physicians. I think
these sessions could be educational for
the physicians as well as their patients.

Sorenson: I never paid my physi-
cians; I just brought chocolate.

Tudy Giordano: Having worked in
cardiopulmonary rehab for 5 years, I
believe that rehab is an ideal place to
provide end-of-life education. The pa-
tients attend rehab for an extended pe-
riod of time, providing the opportu-
nity to develop trusting relationships.
And since a family member accompa-
nies the patient, relationships are also
established with the family.

Unfortunately, the extent of end-of-
life education often occurs only dur-
ing the admission process when they
are asked, "Do you have advance di-
rectives?" It's a check box: that's all it
is. At best, educational pamphlets may
be offered to the patient.

I'd also like to comment about sev-
eral recent studies that revealed the
main source of information regarding
CPRs [cardiopulmonary resuscita-
tions] and CPR outcomes are derived
from television's interpretation of
CPR — not from health care provid-
ers. '-^ You can imagine the miscon-
ceptions that exist if this is where
patients get their information regard-
ing CPRs. Pulmonary rehab is a per-
fect tie-in for health care profession-
als to educate in end-of-life care.

REFERENCES

1 . Mead GE, TumbuII CJ. Cardiopulmonary re-
suscitation in the elderly: patients' and rel-
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2. Jones GK, Brewer KL, Garrison HG. Public
expectations of survival following cardio-
pulmonary resuscitation. Acad Emerg Med
2000;7:48-53.

3. Diem SJ, Lantos JD, Tulsky JA. Cardiopul-
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and misinformation. N Engl J Med 1996;
334:1578-1582.

Heffner: As for some of the hurdles
to education in rehab, rehab is pres-
ently under assault as far as reimburse-
ment goes. Rehab directors are very
dependent on referrals from physi-
cians. If the physicians don't quite un-
derstand the utility of having nonphy-
sician educators talk about end-of-life
decision-making, promoting the con-
sumerism of patients to go back to the
physician and ask pertinent questions,
directors may be hesitant to engage in
those discussions. That is something
we have experienced, so I think some
sense of empowerment is going to be
important to maximize the benefits of
rehab education at the end of life.

Tudy Giordano: To follow up on
that, I was hired as a nurse, not a re-
spiratory care practitioner. There was
not a respiratory care practitioner in
that facility's program because of the
reimbursement constraints.

Fins: I'd like to link up what you
were saying about the cardiologist and
the pulmonologist, and the question
of rehabilitation as a venue to disease
trajectory. There is a literature on dis-
ease trajectory that suggests that when
the trajectory of one's illness is un-
certain, people are more likely not to
offer a palliative intervention and to
go for a curative intervention.' I sus-
pect that explains why the cardiolo-
gists were less embracing of some of
these end-of-life discussions, because
they see sudden death, and they see
people who have congestive heart fail-
ure who kind of wax and wane and
whose prognostic indicators are per-

haps less certain than, say, a more con-
ventional cancer trajectory, or even
perhaps COPD, which has some sim-
ilarity to congestive heart failure.

I think the observation that Randy
[Curtis] had in his data about rehabil-
itation is another way of explaining
that it might be that when one is re-
ferred to rehabilitation, there is a rec-
ognition that you are on a different
part of that trajectory and a different
part of the curve, and there's a recog-
nition that the disease has progressed.
That might be another alternative ex-
planation of why the rehabilitation
venue is so well suited to these kinds
of discussions.

REFERENCE

1. Lynn J. An 88-year-oId woman facing the
end of life. JAMA 1997;277:1633-1640.

Heffner: It is difficult to understand
the different attitudes of cardiologists,
pulmonologists, intensivists, neph-
rologists, oncologists, all of whom deal
with patients with terminal conditions.
Some have suggested the varying lev-
els of interest of different specialists
toward death and dying derive from
the different trajectories of the disor-
ders they treat. When we investigate
cardiac rehab programs, we find a
lower interest in end-of-life education
as compared with pulmonary rehab
programs. Yet cardiac programs deal
with patients with congestive heart
failure who have a worse prognosis
than the patients with COPD. I think
varying interests in end-of-life topics
has something to do with the accul-
turation process of physicians going
into different subspecialties and some
of the inherent attitudes toward health
care that drive our interests in joining
certain subspecialties.

Fins: I would just add that in our
study of the 200 adult patients in our
institution (and Tom Delbanco did a
similar study in the 1980s),' everyone
in our study died, and it was a retro-
spective chart review. The resuscita-
tion rates were different, depending

Respiratory Care • November 2000 Vol 45 No 11

1373

Role of Pulmonary Rehabilitation in Palliative Care

on the disease category, with AIDS
and cancer being the least resuscitated
categories, and I think that reflects the
cuhural issues that you're describing,
whereas heart disease is more likely
to be resuscitated.

REFERENCE

1. Bedell SE, Delbanco TL. Choices about car-
diopulmonary resuscitation in the hospital.
When do physicians talk with patients?
N Engl J Med 1 984;31 0:1089-1 093

Curtis: I think that in pulmonary
disease, particularly in COPD, we're
more in the cardiac camp. At least
that's the way I view it. We've been
less embracing of palliative medicine
and palliative medicine principles in
the past. I think it's relatively new to
this field. I would put us in the same
camp as the cardiologists in terms of
just newly discovering this area as be-
ing important. Bo [Burt] and I were
surprised that this was considered new
and groundbreaking, because this kind
of discussion has been going on in
palliative medicine for 10 or 20 years.
In this field we're just kind of waking
up to that.

Fins: I know as a general internist
how often it's the old family doctor or
general internist who has to go in and
speak to the intensivist about goals of
care. Often what is apparent in the
general and palliative medicine arena
is sometimes discordant in the inten-
sive care setting, where the goals have
traditionally been very different.

Burt: Since Randy [Curtis] asked
(I've been biting my tongue, really),
I'll let the tongue wag just a little bit.
All this is incredibly important, but
my concern keeps coming back to your
"deus ex machina" slide. I think it's
important to keep emphasizing how
little we know about how to make a
real dent in this problem. We now
know that regarding the old approach
about advance directives: there was a
lot of talk about it, a lot of investment
of energy, but very little came of it. In

a sense, you are coming at the end of
that process and we now know what
not to do. But the question of deciding
what to do still seems to me to be very
puzzling. The resistances are just enor-
mous. And that's what I'm going to
talk about. '

REFERENCE

1. Burt, RA. The limitations of protocols for
end-of-Iife-care. Respir Care 2000:(in press).

Heffner: I agree with you entirely.
Your comment has given me an op-
portunity to underscore that this talk
really is not about using rehab to pro-
mote the completion of formal docu-
ments of advance directives. It is a
talk about how we can use pulmonary
rehab to help patients engage in ad-
vance planning. Advance planning in-
cludes genuine communication of life
goals and values between patients and
their physicians and families. These
discussions have a much greater op-
portunity of enriching death and dy-
ing than formal instruments of advance
directives.

Burt: All that I mean to say, though,
is: Be careful about deifying advance
planning. And seeing that 10 years
from now — I hope it's not so, but it
seems to me there's some reason to
think it would be so — that we'll say,
"You know, that doesn't work."

One other little detail: you mentioned
the SUPPORT data, specifically that
you allude to, about the patients (and
their families), who say near the end
of life that they wanted to discuss these
matters with their physicians, but
didn't. In my talking to Joanne Lynn,
who was one of the investigators, about
what they found in detail, particularly
in going through the qualitative mate-
rial, the thing that was stunning to her
was how many patients and their fam-
ilies who had had this education be-
fore, and this intensive investigation,
and had documents, but as the time
approached, they didn't want to dis-
cuss it either. There was silence on
both sides and it wasn't that they were

running after their physician to say
"Well, the time is coming, let's do. . . "
It was that a kind of silence descended
on both sides of the dialogue, so there
was no incentive to move forward.
That seems to me to be the puzzling
data and the challenging data, really —
how to understand that and how to
break into it.

Heffner: I agree, and I would take
it one step further, because I am ar-
guing that rehab programs are a won-
derful site for advance planning edu-
cation. I would be the first to say,
however, that the content of that ed-
ucation has not been defined. No one
knows the most effective way to ed-
ucate patients about end-of-life issues.
I don't know of effective ways to ed-
ucate physicians about what we should
be doing. So far, most approaches for
promoting more end-of-life interest
among physicians have not been ef-
fective, so I think pulmonary rehab
is a good forum to contribute to the
dialogue of understanding what should
transpire as patients go through efforts
to cope with their diseases and the end
stages of their lives.

Hansen-Flaschen: I think you're
right on target with this. It's a good
message to the respiratory care com-
munity. I want to amplify that com-
ment and offer an idea of why it's so
hard to bring this up for physicians in
an outpatient setting. In addition to
the time constraints, there's the hid-
den message that's often conveyed
when a physician raises the subject of
end-of-life planning; people are in-
tensely interested in how long they're
going to live. I think a lot of patients
assume their doctor knows more about
that than they do, and what the doctor
knows is bad. So patients are very sen-
sitive to this subject. When doctors
propose end-of-life planning, they
sometimes need to stop and deal with
prognosis in a very explicit way be-
fore they can ever get along to the
end-of-life planning. So the tension
and the fear is "So this doctor knows

1374

Respiratory Care • November 2000 Vol 45 No II

Role of Pulmonary Rehabilitation in Palliative Care

that I'm going to die soon." And that
puts the doctors off.

When it"s brought up in a respira-
tory care pulmonary rehabihtation set-
ting, as a matter of course, as a routine
part of pulmonary rehab, that same
message of "You're going to die soon"
doesn't come across. It defuses the sit-
uation and may allow people to get
the message less burdened by emo-
tion. I would hope that softens the path-
way back to the physician to talk about
prognosis more explicitly. But that
may be one reason you can bring it up
easier than we can.

Silvestri: That just segues into my
question, which is that I feel that a lot
of physicians are very resistant to hav-
ing other health care providers talk to
their patients about this subject. I think
we've learned that from the ICU,
where nurses begin discussions when
they feel the patient has a poor prog-
nosis and the respiratory therapists be-
gin discussions when they feel the pa-
tient has a poor prognosis, and

sometimes the team isn't all on the
same page when they're discussing the
patient's prognosis. So physicians
have become very leery, in my view,
despite the fact that they don't do it
themselves, of allowing other provid-
ers to talk about this subject. Since
this is destined for our other allies in
ICUs and elsewhere, I wonder what
you think of that. You alluded that
there is some discomfort out there. Can
you gauge that discomfort for us and
suggest ways around it?

Heffner: There certainly is discom-
fort among us physicians. There's a
death anxiety among physicians that
is greater than that experienced by
other members of society. We don't
have any knowledge regarding the
death anxiety of respiratory therapists.
I suspect that they would be wonder-
ful resources to patients. I believe they
could help us do what Timothy Quill
and others over the last few years have
recommended in de-medicalizing the
end-of-life dialogue.'

It is not all about "interventions,"
"life support," and "mechanical ven-
tilation." It is about respiratory thera-
pists holding the hands of their pa-
tients, talking with their families,
giving nebulized morphine to relieve
suffering, and providing a caring pres-
ence. It is about talking of life values
and goals and assisting family-based
discussions.

We physicians need to stop central-
izing ourselves in patients' dying and
centralize the patient surrounded by
their physician and anybody else —
nurses, next door neighbors, and any-
one else who can facilitate this fami-
ly-based process. I believe respiratory
therapists can make major contribu-
tions to their patients' well being at
the end of life.

REFERENCE

Quill TE, Brody H. Physician recommenda-
tions and patient autonomy: finding a bal-
ance between physician power and patient
choice. Ann Intern Med 1996;125:763-769.

Respiratory Care • November 2000 Vol 45 No 11

1375

Noninvasive Ventilation at the End of Life

Joshua O Benditt MD

Introduction
Case Presentations

Case One

Case Two
Noninvasive Ventilation at tlie End of Life: Treatment, Palliation, or Both?

Data on NPPV at the End of Life: Relief of Dyspnea

Improvement in Quality of Life

Prolongation of Life

Patient Experiences of NPPV and IPPV
Summary and Future Directions

[Respir Care 2000;45(11):1376-1381] Key words: noninvasive ventilation, re-
spiratoryfailure, amyotrophic lateral sclerosis, chronic obstructive pulmonary
disease, neuromuscular disease, mechanical ventilation, endotracheal tube,
bi-level positive airway pressure.

Introduction

Noninvasive ventilation (mechanical ventilation with-
out the use of a tube passing into the trachea) has been
available in the treatment of respiratory failure for over
100 years. The 1950s saw widespread use of noninvasive
ventilators during the polio epidemics. The development
of improved endotracheal tube and ventilator technology,
as well as the advent of the intensive care unit (ICU), led
to a greater use of invasive positive pressure ventilation
(IPPV) for acute respiratory failure. However, in the past
20 years, the use of noninvasive ventilation has reemerged
and gained widespread popularity in the treatment of both
acute and chronic respiratory failure. Numerous devices
are available for delivery of noninvasive ventilation, in-

Joshua O Benditt MD is affiliated with the Division of Pulmonary and
Critical Care Medicine, University of Washington School of Medicine,
Seattle, Washington.

A version of this paper was presented by Dr Benditt during the Respiratory
Care Journal Conference, Palliative Respiratory Care, held May 19-21,
2000 in Cancun, Mexico.

Correspondence: Joshua O Benditt MD, Division of Pulmonary and Crit-
ical Care Medicine, University of Wa.shington School of Medicine, Box
356522, Seattle WA 98195-6522. E-mail: benditt@u.washington.edu.

eluding both negative pressure devices (iron lung, cui-
rasse, poncho), body ventilators (pneumobelt and rocking
bed), as well as positive pressure devices (volume venti-
lation or bi-level positive airway pressure delivered via
nasal, oral, or oronasal interface).'-* However, noninva-
sive positive-pressure ventilation (NPPV) delivered via na-
sal mask or full face mask is essentially the only method
currently in widespread use for these patients, and I will
therefore limit my discussion in this article to that topic. In
the setting of palliative medicine, NPPV has been sug-
gested as a means to reduce patient work of breathing and
therefore dyspnea.''**

For the patient with terminal disease, dyspnea is one of
the most distressing and common symptoms. The most
widely used treatment for dyspnea in terminal diseases is
narcotic and anxiolytic medication. These medicines are
effective in relieving dyspnea, but have substantial adverse
effects, such as respiratory drive suppression, somnolence,
and constipation. Noninvasive ventilation represents an
alternative method to treat dyspnea, although clearly it
also has its own limitations and adverse effects. Little has
been written about the use of NPPV in the care of patients
at the end of life, although it is frequently u.sed in this
setting today.

The following two cases are drawn from clinical expe-
rience at our hospital. They will be used to illustrate the
potential benefits and possible difficulties in utilizing "pal-
liative" noninvasive ventilation.

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Respiratory Care • November 2000 Vol 45 No 1 1

Noninvasive Ventilation at the End of Life

Case Presentations

Case One

A 70-year-old woman with a history of severe chronic
obstructive pulmonary disease (COPD) and recently-diag-
nosed lung cancer was admitted to the hospital with dys-
pnea and respiratory failure. Arterial blood gas analysis
revealed marked respiratory acidosis (acute and chronic)
with pH 7.23, partial pressure of carbon dioxide (Paco,) 88
mm Hg, and arterial partial pressure of oxygen (Pao,) 47
mm Hg on room air. She refused intubation but accepted
a trial of NPPV via face-mask. Several hours after admis-
sion, another arterial blood gas analysis indicated pH 7.34,
Paco, 78 mm Hg, and Pao, 68 mm Hg. Within two days the
patient required only nocturnal NPPV and for several hours
during the day.

The patient decided not to continue NPPV long term,
and over the next few days concentrated on completing
life-closure tasks. She was able to finish her will, put her
tmancial affairs in order, and contact relatives and friends
whom she had not seen in years. She decided at that time
to discontinue NPPV, and died 36 hours later, with her
family at the bedside.

Case Two

A 50-year-old man was referred for evaluation of respi-
ratory status in the face of amyotrophic lateral sclerosis
(ALS or Lou Gehrig's Disease). He had no respiratory
symptoms at that time and his vital capacity was 75% of
predicted when measured in clinic. Eight months later the
patients had substantial limb muscle weakness but no bul-
bar symptomatology. The patient did note recurrent morn-
ing headaches and tiredness during the day, consistent
with nocturnal hypoventilation. The patient was started on
nasal noninvasive ventilation at night. A feeding gastros-
tomy tube was placed, and 2 years later the patient is now
essentially on NPPV 24 hours per day. He is able to use
NPPV on his wheelchair with a special mount and battery
supply (Fig. 1). He is currently deciding when and how he
will discontinue NPPV, as he does not wish invasive ven-
tilation.

Noninvasive Ventilation at the End of Life:
Treatment, Palliation, or Both?

Medical treatment spans a spectrum of intended purpose
that ranges from curative on the one hand to purely pal-
liative on the other (Fig. 2A). For example, removal of a
lobe of the lung to treat an early stage lung cancer is
"curative" in that it is designed to prolong life. On the
other hand, the use of morphine to relieve dyspnea in a
patient with terminal metastatic lung cancer would be purely

Fig. 1 . Photo of patient described in Case Two with portable NPPV
set-up in place. Patient is mobile outside the home with this de-
vice. (Reproduced with patient permission.)

palliative. Noninvasive ventilation is remarkable as a med-
ical therapy in that it can serve as both a curative inter-
vention for certain varieties of respiratory failure and as a pal-
liative intervention for the relief of dyspnea (Fig. 2B).

For instance, the treatment of a pre-term infant suffering
respiratory distress syndrome can maintain adequate ven-
tilation to allow the patient to regain normal respiratory
function, thus acting as a curative procedure. On the other
hand, the treatment of a patient with end-stage pulmonary
disease such as lung cancer or COPD, as in Case One, to
relieve symptoms or allow life-closure tasks to be com-
pleted is entirely palliative in nature. In some instances,
such as Case Two above, NPPV can serve both purposes.
For the ALS patient in Case Two, NPPV relieved the
symptom of dyspnea and probably also has prolonged his
life substantially.

This is a unique situation in the treatment of dyspnea at
the end of life. Most medications utilized to palliate dys-
pnea have the potential "double-effect" of relieving dys-
pnea and, at the same time, shortening life because of a
reduction in respiratory drive and resulting hypercarbic
respiratory failure. We accept the shortening of life-span
because of the paramount importance of relieving suffer-
ing in these terminal patients. On the other hand, NPPV

Respiratory Care • November 2000 Vol 45 No 11

1377

Noninvasive Ventilation at the End of Life

Treatment Spectrum

Cure

Palliate

Noninvasive Ventilation

Cure

Palliate

Fig. 2. A: Intention of medical treatments. B. Intention of treatment
with NPPV. COPD = chronic obstructive pulmonary disease. ALS =
amyotrophic lateral sclerosis.

may produce just the opposite effect by supporting respi-
ration and prolonging life as well as relieving symptoms of
dyspnea. I have termed this the "reverse double-effect" of
noninvasive ventilation. Although this reverse double-ef-
fect may be seen as beneficial, it raises questions about the
effects of palliative noninvasive ventilation.

For instance, how does noninvasive ventilation fit into
the framework of the hospice movement as it currently
exists in the United States. Many hospice programs require
that their clients forego procedures that are aimed at pro-
longing life, such as mechanical ventilation. There is also
the issue of how to discontinue noninvasive ventilation
once it has been initiated. The gradual increase in arterial
carbon dioxide that is seen in many terminal respiratory
diseases, and that naturally reduces the awareness of the
dying process, may be ablated with NPPV. Patients may
therefore suffer more in the very final phases of life, de-
prived of nature's own "narcotic." Clearly, if one is to use

palliative NPPV, the provision of adequate anxiolytic and
dyspnea-reducing medicines when the ventilator is with-
drawn is critical. Unfortunately, there is little written to
guide us, and even less data available concerning patient
experiences or wishes regarding this technology. In the
following section, I will review what data are available
regarding relief of symptoms, improvement in quality of
life, and prolongation of life.

Data on NIPPY at the End of Life: Relief of Dyspnea

Dyspnea at the end of life is a very common and up-
setting symptom for the patient and family. Very little data
are available regarding NPPV in the end of life setting, so
that much of our understanding comes through evaluation
of studies of NPPV in situations other than for palliative
intent. One such study is that by Hill et al,** in which the
efficacy of nocturnal NPPV in symptom relief for patients
with neuromuscular respiratory disease was studied. These
investigators studied the effects of withholding NPPV for
one week in 6 patients who were using the devices rou-
tinely at night for sleep-disturbed breathing, P^co, < 50
mm Hg, and forced vital capacity < 50% of predicted.
These patients noted substantial worsening of dyspnea dur-
ing periods when NPPV was withheld, compared to peri-
ods when the device was used. In addition, patients noted
significantly fewer headaches, less sleepiness, and im-
proved energy levels when using NPPV. Patients did note
more nasal and throat congestion during use of nocturnal
NPPV.

NPPV treatment of acute respiratory failure has been
reported to reduce symptoms of breathlessness and air
hunger. Patrick et al'" reported significant reductions in
dyspnea in patients undergoing NPPV for acute respira-
tory failure due to a number of causes (Fig. 3).

Carrey measured inspiratory muscle activity with dia-
phragm electromyogram in 9 subjects with severe restric-
tive or obstructive lung disease while on and off NPPV."
He found that electromyogram activity of the respiratory
muscles (a measure known to correlate with dyspnea and
patient work of breathing) was reduced while patients re-
ceived NPPV, suggesting a physiologic mechanism for the
symptom relief.

Improvement in Quality of Life

Cazzoli and Oppenheimer performed an important study
of the quality of life in ventilator users with ALS.'- These
authors reported quality of life and survival outcomes in a
prospective study of ALS patients ventilated with either
NPPV (25 individuals) or IPPV via tracheostomy (50 in-
dividuals) from 1990 to 1995. All 25 of the patients had
planned for NPPV in advance and none were placed on
this technology emergently. Twenty-three of the patients

1378

Re-spiratory Care • November 2000 Vol 45 No 1 1

Noninvasive Ventilation at the End of Life

<
o

o
a.
o
ffi

6 .

'"S

N«a

10.< A

11.9 X,
8 a

■

•
O

XlSEM r.3 1

001

29i04

1.0-Tn

PRE

5-1 HR

Fig. 3. Dyspnea as measured by the Borg scale in 8 neuromus-
cular patients before (PRE) and 30-60 minutes (0.5-1 HR) after
initiation of noninvasive positive-pressure ventilation. (From Ref-
erence 10, with permission.)

lived at home and 2 of the patients who were widows lived
in skilled nursing facilities. Five patients suffered from
bulbar symptomatology at the time NPPV was initiated.
Four of these bulbar patients withdrew NPPV because it
did not relieve their symptoms, and died. The fifth also did
not find symptom relief with NPPV but chose tracheos-
tomy and IPPV. Twenty patients did not have bulbar symp-
toms at the time of initiation of NPPV. All of these indi-
viduals reported significant relief of respiratory symptoms
and an improvement in voice volume and ability to com-
municate. In addition, none of these NPPV users required
deep suctioning and all were able to continue to eat by
mouth. Fifteen of the 20 patients continued to use NPPV
for substantial periods, ranging from 6 to 64 months for 20
to 24 hours per day. One patient used the device for 24
hours per day for 2 years. The onset of bulbar symptoms
that prevented effective use of noninvasive ventilation led
to either a choice to discontinue NPPV, switch to trache-
ostomy and IPPV (1 patient), or death. By the end of their
study, 1 7 of the 25 NPPV users had died.

A recent study reported in abstract form by Lyalle et al
also suggests that NPPV improves quality of life and cog-
nitive function in patients with ALS who used NPPV,
compared to those who did not.'-^ Fourteen ALS patients
who used NPPV for sleep-disordered breathing were com-
pared to a control group of patients with similar functional
impairment but without sleep disturbance or the need for
NPPV. Both were evaluated using the "SF-36" (short-form

0.0

■ Tolerant
Intolerant

■ Overall

— I —

Fig. 4. Survival in amyotrophic lateral sclerosis patients who were
tolerant and used noninvasive positive-pressure ventilation, those
who were not tolerant, and the group as a whole. (From Reference
18, with permission.)

36-question health survey. Medical Outcomes Trust, Bos-
ton, Massachusetts), a well-validated quality of life instru-
ment, as well as the ALS Functional Rating Score before
and one month following the application of NPPV in the
study group. Functional ability deteriorated similarly in
both groups, but vitality, mental health, and role physical
domains of the SF-36 were significantly better in the NPPV-
treated group.

Prolongation of Life

NPPV probably prolongs life when used as a palliative
intervention at the end of life. For ethical reasons, no
randomized controlled trial has been performed that denies
NPPV to those with a terminal disease who wish to use
this device. It is clear in patients with slowly progressive
neurologic diseases such as Duchenne's muscular dystro-
phy that NPPV can prolong life by years, if not de-
cades.'-''*-'^ Even in more rapidly progressive diseases
such as ALS, it is likely that life is prolonged with NPPV.
Aboussouan et al'^ reported significantly greater survival
among a group of ALS patients who used NPPV than
among those who did not (Fig. 4). In a similar retrospec-
tive study, Kleopa et al" showed that ALS patients who
were able to use NPPV > 4 hours per day survived longer
than those who were able to use it < 4 hours per day or
those who refused the intervention. Both of these studies
suffer from the possibility that the factor that explains
tolerance and choice to use NPPV (lack of bulbar symp-
tomatology) may also result in a difference in mortality
from ALS.

The treatment of acute respiratory failure with NPPV
may also prolong survival in those patients who refuse
intubation. Meduri et al* reported the results of 1 1 patients
with end-stage disease who refused intubation and me-
chanical ventilation but accepted treatment with NPPV.
Patients refused intubation either because of previous ex-

Respiratory Care • November 2000 Vol 45 No II

1379

Noninvasive Ventilation at the End of Life

perience with IPPV or the reahzation that their illness was
terminal. All patients were in severe respiratory distress at
the time of entry into the trial. Nine of 1 1 patients had
predominantly hypercarbic respiratory failure. Five of 1 1
(45%) of the patients survived and were discharged from
the hospital. A recent study performed at Brown Univer-
sity in 150 patients showed similar results (Mitchell Levy,
personal communication, 2000). All of these patients were
thought to require intubation to survive hospitalization. It
is likely that this survival rate of near 50% would be
unlikely in an untreated control group. The authors report
that their subjects had significant relief of dyspnea with
initiation of NPPV and found the device generally com-
fortable.

Patient Experiences of NIPPV and IPPV

IPPV and NPPV share the same basic goal of augment-
ing or replacing patient-generated respiration by rhythmi-
cally inflating and deflating the respiratory system. The
patient experience with these methods is clearly different
(Table 1) although no studies documenting this are avail-
Table l. NPPV vs IPPV

Table 2. Complications of NPPV

NPPV

IPPV

Mechanical support

Yes

Speech

Yes

Eating

Yes

Need for sedation

Variable

Yes

Discomfort

Variable

Yes

Interface easily removed

sure

ventilation.

Yes

NPPV = noninvasive posilive-pres

IPPV = invasive positive-pressure

ventilation.

Adverse Event or
Complication

Frequency

(%)

Air leaking

Nasal/oral dryness, congestion

Mask discomfort

Gastric distension

Eye irritation

Nasal redness/ulceration

Aspiration

Failure to ventilate

Failure to tolerate

100

25-75

30-50

15-30

10-20/5-10

NPPV = noninvasive positive-pressure ventilation (From Reference 21.)

ing knowledge of the equipment as well as careful fol-
low-up is important in the use of NPPV in any setting.

Summary and Future Directions

NPPV, I believe, is a useful tool in the palliative care of
some patients with terminal disease. It is a novel treatment
option in that it can, in some cases, relieve the disabling
and distressing symptom of dyspnea while at the same
time prolonging life. Although this sounds superficially
very attractive, many serious questions regarding the use
of NPPV at the end of life remain to be answered. Clarke
et al believe that the use of NPPV in patients with terminal
diseases contradicts the biomedical ethics principle of non-
maleficence (do no harm) by subjecting the patient to un-
comfortable interventions in hospital. ^^ They also contend
that routine use of NPPV would result in vast monetary
expenditures that could result in an unfair allocation of a
scarce resource. The current situation is one in which the

able in the medical literature. Indirect evidence for this is
presented by Bergbom-Engberg et al who reported on 158
patients who had been intubated, ventilated, and who could
remember their experience. 2" Seventy-four recalled fear
and anxiety as the worst symptom, and all reported that
isolation due to communication difficulties was a greater
problem than direct airway-related nursing care activities.
With NPPV, verbal communication is maintained. '^ This
is extraordinarily important and, in my experience, cannot
be overrated in treatment of those nearing the end of life,
when communication with loved ones and resolution of
unfinished tasks are great concerns.

NPPV is associated with a number of adverse events, as
noted in Table 2. 2' However, recent improvements in the
design of the patient ventilator interface have reduced some
of these. Proper application of NPPV requires a well-trained
and competent respiratory therapy staff. A thorough work-

Table 3. Evaluative Questions For Initiation of Palliative NPPV

1. Does the patient have symptoms thai are thought to be responsive
to NPPV (eg, dyspnea, morning headaches, daytime
hypersomnolence)?

2. Does the patient have contraindications to NPPV (eg, coma or
markedly decreased consciousness, inability to control airway,
facial trauma)?

3. Has the patient been fully apprised of the objectives of NPPV as
well as the risks and benefits and alternatives (including trial of
mask-fitting)?

4. Have the patient's wishes concerning invasive ventilation and
cardiopulmonary resuscitation been discussed in advance and
recorded?

5. Is the patient aware that application of NPPV is reversible, not
linked to other treatment measures, and under his or her control at
all times?

NPPV = noninvasive positive-pressure ventilation.

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Noninvasive Ventilation at the End of Life

availability of a technology has pushed forward the use of
a device in ways not previously envisioned. Clearly the
blanket use of NPPV for the terminally ill with respiratory
symptoms would be a grave error. In my practice I ask a
series of questions that reassure me about the proper ap-
plication of NPPV (Table 3). I demonstrate the noninva-
sive ventilation set-up to the patient and allow them to try
the device. If, after the projjer application, the noninvasive
device is not relieving the symptoms as desired by the
patient, I remove the device and institute other palliative
measures. The most important point is ongoing commu-
nication with the patient and family, with clear goal-set-
ting being of utmost importance.

My own sense is that NPPV represents a very positive
advance as an alternative for the relief of dyspnea at the
end of life, which must be used in concert with other
techniques, including the use of narcotics, anxiolytics, and
compassionate communication and care. I focus on deter-
mining what is the best tool to help the patient and his or
her family realize their goals during this difficult period.
NPPV is one of the tools that we can use to improve the
quality of life of the patient with terminal disease.

REFERENCES

1. Aubier M, Muir JF, Robert D, Leger P. Langevin B, Benhamou D.
[Chronic respiratory insufficiency: non-invasive long-term ventila-
tion methods). Rev Mai Respir 1993;10:385-400. Article in French

2. Bach JR. Alba AS, Shin D. Management alternatives for post-polio
respiratory insufficiency: assisted ventilation by nasal or oral-nasal
interface. Am J Phys Med Rehabil 1989;68:264-271.

3. Bach JR. New approaches in the rehabilitation of the traumatic high
level quadriplegic. Am J Phys Med Rehabil 1991:70:13-19.

4. Hill NS. Noninvasive ventilation: does it work, for whom, and how?
Am Rev Respir Dis 1993;147:1050-1055.

5. Leger P, Bedicam JM, Comette A, Reybet-Degat O, Langevin B,
Polu JM, et al. Nasal intermittent positive pressure ventilation: long-
term follow-up in patients with severe chronic respiratory insuffi-
ciency. Chest 1994;105:100-105.

6. Meduri GU, Abou-Shala N, Fox RC, Jones CB, Leeper KV, Wun-
derink RG. Noninvasive face mask mechanical ventilation in patients
with acute hypercapnic respiratory failure. Chest 1 99 1 ; 1 00:445^54.

7. Hardiman O. Symptomatic treatment of respiratory and nutritional
failure in amyotrophic lateral sclerosis. J Neurol 2000;247:245-251.

8. Freichels TA. Palliative ventilatory support: use of noninvasive pos-
itive pressure ventilation in terminal respiratory insufficiency. Am J
Crit Care 1994;3:6-10.

9. Hill NS, Eveloff SE, Carlisle CC, Goff SG. Efficacy of nocturnal-
nasal ventilation in patients with restrictive thoracic disease. Am Rev
Respir Dis 1992;145:365-371.

Patrick W, Webster K, Ludwig L, Roberts D, Wiebe P, Younes M.
Noninvasive positive-pressure ventilation in acute respiratory dis-
tress without prior chronic respiratory failure. Am J Respir Crit Care
Med 1996;153:1005-1011.

Carrey Z, Gottfried SB, Levy RD. Ventilatory muscle support in
respiratory failure with nasal positive pressure ventilation. Chest
1990;97:150-158.

12. Cazzolli PA, Oppenheimer EA. Home mechanical ventilation for amyo-
trophic lateral sclerosis: nasal compared to tracheostomy-intermittent
positive pressure ventilation. J Neurol Sci 1996;139 Suppl:123-I28.

13. Lyall RA, Fleming TA, Newsome-Davis I, Wood C, Leigh PN,
Moxham J. A prospective controlled study of the effect of non-
invasive positive pressure ventilation (NIPPV) on quality of life in
ALS (abstract). Am J Respir Crit Care Med 2000; 161 :A358.

14. lannaccone ST, Guilfoile T. Long-term mechanical ventilation in
infants with neuromuscular disease. J Child Neurol 1988;3:30-32.

15. Heckmatt JZ, Loh L, Dubowitz V. Night-time nasal ventilation in
neuromuscular disease. Lancet 1990:335:579-582.

1 6. Elliott MW, Simonds AK, Carroll MP, Wedzicha JA, Branthwaite MA.
Domiciliary nocturnal nasal intermittent positive pressure ventilation in
hypercapnic respiratory failure due to chronic obstructive lung disease:
effects on sleep and quality of life. Thorax 1992;47:342-348.

17. Curran FJ, Colbert AP. Ventilator management in Duchenne mus-
cular dystrophy and postpoliomyelitis syndrome: twelve years' ex-
perience. Arch Phys Med Rehabil 1989;70:180-185.

18. Aboussouan LS, Khan SU, Meeker DP, Stelmach K, Mitsumoto H.
Effect of noninvasive positive-pressure ventilation on survival in
amyotrophic lateral sclerosis. Ann Intern Med 1997;127:450-453.

19. Kleopa KA, Sherman M, Neal B, Romano GJ, Heiman-Patterson T.
Bipap improves survival and rate of pulmonary function decline in
patients with ALS. J Neurol Sci 1999;164:82-88.
Bergbom-Engberg I, Haljamae H. Assessment of patients' experi-
ence of discomforts during respirator therapy. Crit Care Med 1989;
17:1068-1072.

Hill NS. Complications of noninvasive ventilation (editorial). Respir
Care 2000;45:480-481.

22. Clarke DE, Vaughan L, Raffin TA. Noninvasive positive pressure
ventilation for patients with terminal respiratory failure: the ethical
and economic costs of delaying the inevitable are too great (edito-
rial). Am J Crit Care 1994;3:4-5.

Discussion

Levy: Great presentation and very
sort of "Pandora's Box-ish." Let me
share some information and maybe get
some thoughts. We just finished a
study at Brown — a prospective cohort
series of about 150 patients who were
DNI [do not intubate] and who re-
ceived noninvasive ventilation mainly.
[Study to be presented at the Society
of Critical Care Medicine meeting
February, 2001.] The primary diag-

noses were COPD, congestive heart
failure, and cancer, and 50% of the
COPD and congestive heart failure pa-
tients survived to discharge. So it con-
firms the data you presented.

I tend to agree with what you're
saying, but I'm concerned that these
patients — who were DNI — were not
asked, "Is the quality of your life such
that you don't want to be alive any-
more if you got sick again?" — that in-
stead they were asked, "If you need
this tube, would you want this tube

back in?" So my sense of noninvasive
ventilation in that patient population
is that I'm still uncertain as to what
informs the ethics of decision-making
in that situation. I fear that as these
data become more and more widely
known, and the fact that physicians
are fundamentally uncomfortable with
end-of-life conversations, rather than
do it, they'll say, "Oh, they're just
afraid of the tube," and patients will
be placed on noninvasive ventilation
without proper consent.

Respiratory Care • November 2000 Vol 45 No 11

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Noninvasive Ventilation at the End of Life

Benditt: I think that is absolutely
right on the money, and it's a big is-
sue in this area, particularly for the
acute exacerbation of a more chronic
disease. Being with the ALS patients,
I have tons of time to go over that,
and we show pictures and all that, but
that's not what you're talking about.
There is a risk that you could just slip
it in there, "Oh, he doesn't want intu-
bation, but we're still going to do all
this stuff." I agree that it requires a
discussion with the patient or his or
her proxy to go over what does it mean.
The one thing that I do like about it
is that because communication is
maintained, if the patient comes out
of CO2 narcosis or respiratory failure,
that he or she then could say "Hey,
this was really nice of you, but I don't
want this; take it off me now." I think
it's much easier than for the intubated
patient, where that can be very pro-
longed. I don't remember the last time
I was able to speak directly with a
patient about taking the endotracheal
tube out, and I think you can with
this, and that's the difference. But, I
agree. It could be a crutch and used
inappropriately.

Fins: In the 1970s, Lewis Thomas
wrote about halfway technologies.' He
was talking about how technology
evolves: we take incremental steps. It
seems to me that this is a positive half-
way technology because it's the ap-
propriate use of an intervention that is
completely proportionate to where
these people are, whereas a ventilator
is perhaps over the top: it's too inva-
sive, it may not be that much more
beneficial, and it carries a greater de-
gree of burden. So this seems to be
completely proportionate. I also think
that, regarding withdrawals, even
though we say that withdrawals are
not causal, I believe people will find
removing these masks less traumatic
and therefore less stressful for patients
and families and clinicians than the
act of extubation.

This is a really interesting and cou-
rageous kind of intervention. Again,

it's employing technology to achieve
goals of care. It's fortunate that we
have this less aggressive but effica-
cious technology available to meet pal-
liative goals. The important thing to
mention is that people clearly under-
stand what this can and cannot achieve.
It's truly palliative. It's not curative.

REFERENCE

1. Thomas L. The Hves of a cell: notes of a
biology watcher. New York: Penguin. 1995.

Curtis: I think you raised some re-
ally interesting issues. What I want to
propose is that we think about the qual-
ity/quantity trade-off as a two-by-two
table where quantity is along the top
and quality on the left side. You can
either increase both quality and quan-
tity, or you can decrease both quality
and quantity, or you can have discor-
dance between the two. What I would
propose is that if you're increasing
quality and quantity, from the perspec-
tive of the medical provider it's a no-
brainer: the care should be provided.

You brought up a lot of interesting
issues about how it may not be a no-
brainer for hospice benefits. There may
be all kinds of issues about paying for
this care. But in terms of whether we
should provide it, if it increases the
quality and quantity of someone's life,
that's easy — the care should be pro-
vided. I think where it's difficult is in
those discordant boxes, where it in-
creases one and decreases the other;
and there, it seems to me, the big issue
is being able to communicate with pa-
tients and families effectively, to let
them weigh the risks and benefits as
best they can, to help them make de-
cisions about whether they want the
intervention.

I would propose that the endotra-
cheal tube is an artificial distinction
for aggressiveness of care. I want to at
least propose that whether there's a
tube through the larynx or not, we need
to consider whether the treatment is
indicated and wanted. What we're do-
ing is weighing risks and benefits of
treatment. Noninvasive ventilation, as

you've laid out very nicely, has fewer
risks involved, but there may be situ-
ations where it has fewer benefits as
well. We just need to continue to keep
that balance in mind.

Benditt: I think you made two re-
ally important points. I agree that there
is definitely one level at which the
mechanical support of life is the same
between the two, but I think in terms
of the patient experience they are miles
apart. To me there's a very different
experience between those two, and I
think noninvasive ventilation allows
much more careful and close interac-
tion between the caregiver and the pa-
tient, which, at least in my experience
in the ICU, is not possible with that
tube in.

About your first point, the quality/
quantity issue — I think that is a great
way to look at it. A lot of the critics of
this would say, "You are prolonging
the end-of-life period, which is a pe-
riod of suffering, and because you're
prolonging it, that in and of itself is a
negative." There are very few data
about that. The Lyalle study is the only
one that I have found about end-of-
life and quality-of-life with these de-
vices.' So I can't really speak to it
other than to say that in a small group
it seemed to help. Certainly in my ex-
perience with ALS patients it helps. I
think it's an area that really needs
work, which is good for me.

Another thing is the financial issue,
because the.se ventilators are not cheap.
They're about $5,000 apiece. You
might have to buy many more of them,
both for the hospice and for the hos-
pital. I thought about that a little, and
clearly, because it is end of life, you're
looking at a shorter period of time,
and you could certainly have a stable
of noninvasive ventilators you could
loan out. But I think your analysis is
exactly right. If it improves quality
and it improves quantity, that's great.

REFERENCE

1 . Lyalle RA, Fleming TA, Newsome-Davis I,
Wood C, Leigh PN, Noxham J. A prospec-

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Respiratory Care • November 2000 Vol 45 No 11

Noninvasive Ventilation at the End of Life

live, controlled study of the effect of nonin-
vasive positive pressure ventilation (NIPPY)
on quality of life in ALS (abstract). Am J
Respir Crit Care Med 20(X);161:A358.

Silvestri: I just want to make it clear
for the practitioners of respiratory ther-
apy who might not be famihar with
the hospice benefit, and then I'll ask
around the room for people's personal
opinions. First, while I think we are
asked to predict survival, we're very
poor at it. Tomorrow I ' m going to show
some data about predicting survival in
hospice, particularly in emphysema
where they live much longer than we
expect them to live. So we're only
asked to predict that survival, and hos-
pice then trades curative intent treat-
ments; you trade those to hospice for
all these other benefits like the bene-
fits at home of getting equipment and
nursing care and other medical neces-
sities at home. They do not have any
right to withdraw that after that
6-month time period is up, and I think
our respiratory care practitioners need
to know that — that the benefit doesn't
just end.

In fact, there's even a bigger issue
if we think that noninvasive ventila-
tion's expensive; there are people get-
ting chemotherapy with "palliative in-
tent" for metastatic lung cancer. So
there are other precedents for this. One
further point is that not all hospices
are uniform. There is variation in non-
profit hospice and for-profit hospice
in terms of length of stay and quality.

I would caution our other health care
providers that not all hospices are
equal. I wonder what other people's
experiences are. I've found that the
not-for-profit hospices do serve my pa-
tients better and are much less likely
to ask what do you need or what don't
you need. By the way, I think some
physicians aren't using hospice the
way it's intended either. There are phy-
sicians giving chemotherapy in a fee-
for-service system under the guise that
it's palliative therapy. So they get the
patient the hospice benefit and the che-
motherapy on top of that.

Levy: I just wanted to respond be-
cause both Josh [Benditt] and Joe
[Fins] said something that I have to
take objection with, which is the as-
sumption that the discontinuation of
noninvasive ventilation is easier than
the discontinuation of mechanical ven-
tilation. I personally would see it the
other way around. For family, discon-
tinuing ventilation in awake patients
might be more difficult than doing so
for a sedated patient on mechanical
ventilation. I've actually had that ex-
perience in the ICU. So 1 wouldn't
want to assume that noninvasive ven-
tilation is easier to remove than an
endotracheal tube.

Benditt: Actually, I had another
slide that describes questions that re-
main to be answered. One of those
was: How do you withdraw the ven-
tilator with noninvasive ventilation?
For my ALS patient who's now on
noninvasive ventilation 24 hours a day
and is totally awake and alert, this is a
big issue. So if I said it's definitely
easier, 1 should retract that, because I
agree with you that it could be more
difficult, although I think the with-
drawal event itself, if you had appro-
priate sedation and so forth, might not
appear quite so traumatic.

Burt: I just want to introduce a qual-
ification about the hospice 6-month
benefit. You are quite right that once
you're in the hospice, hospice is
obliged to continue care and can get
renewals. But the complexity is, par-
ticularly in the last couple of years,
that the Health Care Financing Ad-
ministration Inspector General has
been coming down very hard on a lot
of hospices where patients survived
past 6 months, forcing hospices to
swallow the costs themselves on the
grounds that they are not appropriately
screening their patients. The Inspector
General, in my judgment and in the
judgment of a lot of people, has been
behaving outrageously, but the hos-
pices are quite cowed about this. The
problem you're going to run into is

not the discontinuance of benefits once
you get in there, but rather the reluc-
tance of lots of hospices to take peo-
ple, unless you can clearly and confi-
dently say they're going to die
tomorrow.

Silvestri: And there is the reluctance
of physicians to put people in and be
wrong about them living over that
6-month period. It makes people un-
derutilize the benefit.

Rubenfeld: Let me just comment
on a couple of the concerns and, again,
since there are no data, we can wax
eloquent. My concern about noninva-
sive ventilation is that there's this is-
sue of the technologic spiral: that once
you're providing one form of life-
support to these patients, others are
gradually added, for example, where
you can't have someone on life-sup-
port without checking arterial blood
gases. So now you've got someone on
noninvasive ventilation and you're
checking blood gases. Then you get
this, "Well, we have to look at chest
x-rays and things like that." So I get
concerned about that.

The other thing that I've seen hap-
pen is I've actually seen physicians
avoid using narcotics in patients who
are supposedly receiving palliative
noninvasive ventilation, because when
we're treating someone for life-sup-
port with noninvasive ventilation, we
try not to sedate them because loss of
mental status is one of the reasons to
intubate the patient. So I've seen phy-
sicians avoid using narcotics because
they want the noninvasive ventilation
to work. So I have concerns about that.
When a patient says they're refusing
intubation, I think we have to really
clarify what it is that they're refusing.
If they're refusing, as Mitch [Levy]
suggested, life-support, because their
quality of life is intolerable and they
no longer wish to have their life pro-
longed, then it strikes me that they're
refusing life-prolonging treatment, in
which case noninvasive ventilation is
not indicated. So if you can find a

Respiratory Care • November 2000 Vol 45 No 1 1

1383

Noninvasive Ventilation at the End of Life

question in there somewhere, feel free
to answer it.

Benditt: Those are all very good
points, and I believe that your last point
is very important. It's quite hard to
give a good answer to that, but I think
it's more having to do with the phy-
sician or health care provider present-
ing to the patient what noninvasive
ventilation is about, trying to avoid
the downward spiral of therapeutic in-
tervention. Having a noninvasive ven-
tilation unit outside of the ICU would
be the first great step away from that.
But I think full up-front discussion
with the patient in the acute setting is
difficult. It is a much easier discus-
sion in a chronic, slowly progressive
disease. How do you get around that?
I don't have an answer.

Heffner: Just one quick comment.
A couple years ago, we started a study
in the rehab patient population with
advanced planning in mind and asked
COPD patients whether they would
want to be on the ventilator at the end
of life. We took the group that said,
"No, I wouldn't under any circum-
stances," and showed them pictures of
noninvasively ventilated versus intu-
bated patients and explained the dif-
ferent modes of invasive and nonin-
vasive mechanical ventilation. We
found that a portion of those patients

rescinded their decision, saying, "I
would opt for noninvasive ventilation
but not translaryngeal intubation." I
think it underscores your points and
emphasizes even more the importance
of advance planning. If we're asking
for consent to intubate or not intubate
or ventilate or not ventilate, we must
be certain that patients understand the
different modes of ventilation that are
available.

Hansen-Flaschen: 1 think there' s an
interesting analogy between prolong-
ing life in ALS with a noninvasive
ventilator and what we're seeing in
some of our idiopathic pulmonary fi-
brosis patients we treat with transtra-
cheal oxygen. Transtracheal oxygen
with a flow rate of 6 L/min may well
prolong life in idiopathic pulmonary
fibrosis, even relative to 2 L of oxy-
gen via nasal prongs. In the final
stages, high flow transtracheal oxy-
gen may keep some patients alive even
after they are bedridden with contin-
uous dyspnea at rest. So the same trade-
offs may emerge in that group of pa-
tients. Transtracheal oxygen seemed
like a good idea when they were walk-
ing around, but later on you wonder if
you're really doing them a favor at the
time that they're bedridden with dys-
pnea. The thing that strikes me is that
your patients could take off their masks
at any time. Our patients can take the

oxygen off the transtracheal catheter
and pull it out at any time, and yet
many of them don't. They're making
an unrestrained choice to continue liv-
ing despite total disability or constant
dyspnea.

Benditt: That's a really important
point. Dr Oppenheimer has written a
lot on this,' but he did some quality-
of-life surveys in patients who were
on mechanical ventilation and actu-
ally compared it to what physicians
thought of it. There was a huge dis-
crepancy in that the patients on me-
chanical ventilation were much more
satisfied than the physicians thought.
And they would repeat the same de-
cision again, and so I think sometimes
we're projecting onto these patients
what we believe we would react to in
that instance. It also comes back to
the informed consent. In the Ameri-
can system, the independence of the
individual is the main thing. We, at
each step, have to make sure it's what
they want. The fact that they're not
pulling it out, I think, means some-
thing.

REFERENCE

1. Moss AH, Oppenheimer EA, Casey P, Caz-
zolli PA, Roos RP, Stocking CB, Siegler M.
Patients with amyotrophic lateral sclerosis
receiving long-term mechanical ventilation:
advance care planning and outcomes. Chest
1996;110:249-255.

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Respiratory Care • November 2000 Vol 45 No 11

Communicating with Patients and Their Families
about Advance Care Planning and End-of-Life Care

J Randall Curtis MD MPH

Introduction

What Do We Know About Communicating with Patients

and Families about End-of-Life Care?
Why Don't Advance Directives Talie Care of This Problem?
Who Do We Talk With about End-of-Life Care?
How Well Do We Do at Discussing End-of-Life Care in the ICU?
What is the Role of the Health Care Team in Communication

with Patients and Families?
When Should We Talk about End-of-Life Care?
How Should We Talk about End-of-Life Care?

Making Preparations Prior to a Discussion

Holding a Discussion about Dying and Death

How Should We Finish a Discussion about End-of-Life Care?
How Can We Help Families with the Decision
to Withhold or Withdraw Life-Support?
What Role Does Medical Futility Play in Discussing End-of-Life Care

with Patients and Families?
Understanding Our Own Discomfort Discussing Death
Summary

[Respir Care 2000;45(1 1): 1385- 1394] Key words: communication, had news,
end-of-life, palliative, advance care planning, chronic obstructive pulmonary
disease, COPD, emphysema, intensive care, critical care.

Introduction

Respiratory care is a practice that involves care for pa-
tients with chronic and terminal disease and patients with

J Randall Curtis MD MPH is affiliated with the Division of Pulmonary
and Critical Care Medicine, Department of Medicine, University of Wash-
ington. Seattle. Washington.

Adapted with permission from Curtis JR. Patrick DL. How to discuss
dying and death in the ICU. In: Curtis JR. Rubenfeld GD. eds. Managing
Death in the ICU: The Transition from Cure to Comfort. New York:
Oxford University Press; 2000.

A version of this paper was presented by Dr Curtis during the Respiratory
Care Journal Conference. Palliative Respiratory Care, held May 19-21,
2000 in CancHn, Mexico.

Correspondence: J Randall Curtis MD MPH, Division of Pulmonary and
Critical Care Medicine, Harborview Medical Center, Box 359762, 325
Ninth Avenue, Seattle WA 98104-2499. E-mail: jrc@u.washington.edu.

critical illness. Communication with patients and families
about end-of-life care is an important component of caring
for these patients and one that has been neglected in the
training of clinicians who provide this care. Provision of
this care occurs in a variety of settings, from the intensive
care unit (ICU) to outpatient clinics and pulmonary reha-
bilitation programs. This article reviews what we know
about communicating with patients and their families about
end-of-life care in these settings.

Pulmonary rehabilitation is a setting where care is pro-
vided for patients with severe and often end-stage chronic
pulmonary diseases. Pulmonary rehabilitation represents
an opportunity for communication about end-of-life care'-^
and patients often appreciate communication in this set-
ting. '^

The ICU is a setting where death is common because of
the severity of illness of the patients. Of patients who die
in the hospital, approximately half are cared for in an ICU
within 3 days of their death and one third spend at least 10

Respiratory Care • November 2000 Vol 45 No 1 1

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Communicating about Advance Care Planning and End-of-Life Care

days in the ICU during their final hospitalization.^ A num-
ber of studies have shown that the majority of deaths in the
ICU involve decisions to withhold or withdraw life-sus-
taining therapies.-'' "'* These decisions are difficult not only
because discussions about dying evoke fear and anxiety,
but also because the dominant culture of the ICU is ori-
ented to saving lives. '^'^ Because of the "Rule of Res-
cue,"'^ effective communication about end-of-life care is
especially difficult. ICU clinicians need to learn effective
communication skills to provide quality end-of-life care to
patients and their families.

Several studies have shown that family members with
loved ones in the ICU rate communication with the health
care providers as one of the most important skills for these
providers."*''* In fact, many families rate clinicians' com-
munication skills as equally or more important than clin-
ical skill. ''-20 A study of family satisfaction following the
stay of a loved one in the ICU has shown that the satis-
faction of family members was associated with having a
single ICU attending physician and the same nurse caring
for the patient on consecutive days.^' These findings sug-
gest that continuity of care and sustained communication
with these clinicians are important to family members.

What Do We Know about Communicating With
Patients and Families about End-of-Life Care?

A number of review articles and books provide clini-
cians with advice about how to communicate with patients
and families concerning the delivery of bad news^^^^'' and
palliative medicine.-'' Although these reviews provide valu-
able insights, they focus on the delivery of bad news and
also on the outpatient setting. Communication about end-
of-life care with patients suffering from chronic pulmo-
nary disease or with patients with critical illness includes
a spectrum of communication about prognosis, treatment
options, goals of therapy, values, and treatment prefer-
ences. Patients with chronic pulmonary diseases, more so
than other patients, express concerns that they do not re-
ceive education about the terminal nature of their disease
and their treatment options, and some patients express
concern that they only receive this information in pulmo-
nary rehabilitation programs. "* Clinicians caring for pa-
tients with chronic pulmonary diseases need to learn how
to discuss end-of-life care with their patients.

In the ICU, these conversations usually concern patients
incapable of participating in these discussions because of
the severity of their illness, and often clinicians and the
family do not have a prior relationship.''^^ The ICU setting
frequently involves complicated, confusing, and even dis-
cordant data that can be overwhelming to family members
and make the family more dependent on the health care
team for assistance with decision-making.^^ For example,
a critically ill patient may have improvement in one organ

system while showing deterioration in several others. There
are also more likely to be discordant views about the ap-
propriate treatment among ICU team members, consult-
ants, and primary care providers, as well as different fam-
ily members.-' Because the ICU is unique in these ways
and is the location in which decisions about withholding
and withdrawing life-sustaining therapy are commonly
made,'' ICU clinicians should make special efforts to im-
prove their skills in this area.

Why Don't Advance Directives Take Care of
This Problem?

In the 1980s, many prominent investigators believed
that advance directives would allow patients to inform
their physicians what kind of care they would want if they
became too sick to speak for themselves.-**'" Advance
directives, including the living will and durable power of
attorney for health care, were promoted as a way to im-
prove end-of-life care. A logical extension of this argu-
ment is that advance directives could diminish the need for
clinicians to discuss end-of-life care with patients and fam-
ilies. However, numerous studies have suggested that ad-
vances directives do not significantly affect the aggres-
siveness or costs of subsequent care''-'' and do not change
end-of-life decision-making in the ICU or hospital set-
tings.'"-"' These studies have led many to lose faith in
advance directives.'''-'^

Advance care planning, defined as an ongoing discus-
sion among patients, family members, and providers, may
be a more effective means of allowing patients' wishes to
be followed if they become too ill to speak for themselves.
Although, to date, there are no data demonstrating the effec-
tiveness of advance care planning, such communication is an
important part of good quality medical care. Advance care
planning incorjx)rates a broad set of goals and involves hav-
ing the communication discussed in this manuscript.

Who Do We Talk With about End-of-Life Care?

The principle of patient autonomy dictates that patients
should be involved in decisions about their medical care
and that communication about a patient's care should oc-
cur with the patient. However, it is important to recognize
that many patients would like their family members to be
directly involved in discussions and even decisions about
their care. In fact, when patients are asked for their pref-
erence in a circumstance where they could not communi-
cate, and where their advance directives differed from what
their loved ones would like done, most patients stated they
would rather that the wishes of their family be followed.'*"
This study shows the importance of involving patients'
families in end-of-life decision making.

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In the ICU setting, the patient's family plays an even
larger role in communication about end-of-life care. Prior
studies have suggested that < 5% of patients are able to
communicate with clinicians at the time that decisions are
made about withholding or withdrawing life-sustaining
therapies in the ICU.'' When ICU clinicians discuss these
issues, most often the discussions are with patients' fam-
ilies and loved ones. Nonetheless, ICU clinicians should not
assume that the patient cannot participate just because he or
she is in the ICU. There are circumstances where patients can
and therefore should participate in these discussions despite
being in the ICU or even on mechanical ventilation.

If a patient can no longer communicate his or her wishes
for medical care, the legal surrogate decision-maker is
usually identified in a hierarchical fashion. First priority
usually goes to an individual named in a durable power of
attorney for health care, and then to family members. In
most states and countries, the family members primarily
responsible for decision-making are, in order, legal spouse,
parent, adult children, and siblings. If there is more than
one individual at a given level in the hierarchy, such as
occurs with the family with several adult children, many
states require that the decision be based on group consen-
sus. Although the law may specify a legal decision-maker,
in most cases the actual decision-making process occurs in
a series of conferences and individual meetings with all
individuals who have strong ties to the patient.'" Decision-
making is usually facilitated if all interested individuals
are involved as early and as completely as possible.

How Well Do We Do at Discussing End-of-Life
Care in the ICU?

Previous researchers have assessed the quality of pa-
tient-physician communication with hospitalized patients
about do-not-resuscitate orders.''^ These studies found sub-
stantial shortcomings in the communication skills of phy-
sicians, noting that physicians spent 75% of the time talk-
ing and missed important opportunities to allow patients to
discuss their personal values and goals of therapy. These
investigators also showed that the majority of these phy-
sicians felt that they did a good job discussing do-not-
resuscitate orders, but that they had very little training
about how to hold these types of discussions with pa-
tients.'*'' In a more recent study, these same investigators
examined communication between physicians and outpa-
tients about advance directives.**'*' In this study, investi-
gators again found that physicians rarely elicited informa-
tion about patient goals and values, avoided discussing
uncertainty, and rarely asked patients to explain why they
had specific treatment preferences or what was important
to them about their quality of life after treatment. In sum-
mary, these data suggest that the quality of patient-physi-
cian communication about end-of-life care is poor and

unlikely to improve under our current system of health
care delivery and medical education. These studies chal-
lenge us to develop better ways to teach end-of-life com-
munication skills to clinicians in training and in practice.-^

What is the Role of the Health Care Team in
Communication with Patients and Families?

The health care team is made up of a number of health
care professionals, including physicians, nurses, respira-
tory therapists (RTs), social workers, and others. Different
team members may play various roles in different settings.
It is important that all team members who are directly
involved in communication with patients and families be
aware of all communication occurring about end-of-life
care. Consensus within the team is an important step in the
process of making decisions about withholding or with-
drawing life-sustaining therapy, regardless of whether the
setting is an ICU, hospital ward, or outpatient setting such
as pulmonary rehabilitation. Of the few legal cases that
have been brought against health care providers for end-
of-life decisions, most have been initiated by disgruntled
colleagues. In addition, it is important that all members are
informed about the medical situation and plan of therapy
so that patients and families do not receive conflicting
messages from different staff members.

Critical care nurses play a pivotal role in clinician-fam-
ily communication in the ICU setting."** "** Prior research
with family members after the death of a loved one in the
ICU suggests that families' communication with nurses
occurs mostly during informal conversations at the bed-
side."* In addition, families rate the nurses' skill at this
communication as one of the most important clinical skills
of ICU nurses. "■^O'*'-''' In a meta-analysis of studies as-
sessing the needs of family members who had a loved one
in the ICU, 8 of the 10 needs identified relate to commu-
nication with clinicians, and the majority of these commu-
nication needs are primarily addressed by the nurses.'"*
However, there are data to suggest that nurses are not
better at communication about end-of-life care than phy-
sicians'' and, consequently, could also benefit from efforts
to improve the quality of this communication.

RTs play an important role in the care of patients at the
end of life. In the ICU setting, RTs are very involved in the
care of patients with acute and chronic respiratory failure.
These practitioners are often faced with questions from
patients and family members and are often actively in-
volved in the discontinuation of mechanical ventilation in
the setting of withdrawal of life-sustaining therapy. In the
outpatient setting, RTs may be involved in counseling pa-
tients with chronic and terminal pulmonary diseases. As de-
scribed in the foreword of this issue of Respiratory Care,'^
and in the forthcoming article by Louisa Viles,'-' RTs may

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Communicating about Advance Care Planning and End-of-Life Care

find this role very difficult and should be trained in ways
to confront these issues.

Social workers often play an important role in ICUs in
identifying and contacting family members, coordinating
and scheduling family conferences, and keeping in contact
with family members during the hospital stay. This is a
very important role in providing sensitive care and in com-
municating with patients' families. The person filling this
role should be aware of the medical prognosis and plans
and be an active part of the health care team.

When Should We Talk about End-of-Life Care?

It is impossible to be prescriptive about the "right" time
to discuss end-of-life care, except to say that we should
talk about it earlier than we usually do. Oftentimes, clini-
cians, particularly physicians, wait until they have decided
that life-sustaining treatments are no longer indicated be-
fore they initiate communication about end-of-life care
with patients or families. Patients and families may be just
beginning to think about withdrawing life support while
clinicians are feeling increasingly frustrated at providing
care they believe is no longer indicated. Alternatively, the
patients and families may be considering withdrawal of
life-sustaining treatments well before the health care team.
The team members may also differ in the timing with
which they believe that life-sustaining therapy should be
withheld or withdrawn. In the ICU setting, nurses often
come to this conclusion earlier than physicians, which can
lead to extreme frustration for some critical care nurs-
es^''-^^ and be a source of interdisciplinary conflict for
physicians and nurses.^*

A potential solution to this difficulty is to begin discus-
sions with the health care team, patients, and families early
in the course of a chronic or acute illness. However, early
in the course of care these discussions may focus on prog-
nosis, goals of therapy, and the patients' values and atti-
tudes toward medical therapy. These early discussions may
foreshadow or set the stage for subsequent discussions
about withdrawing or withholding life-sustaining treat-
ments. These discussions can also be a way for clinicians
to let patients and families know that end-of-life care is an
important topic that the clinician is willing to discuss.

(3) talk with the patient or family about who should be
present and what will be covered during the discussion,
and (4) anticipate what is likely to happen after the dis-
cussion. These 4 issues address the processes that ideally
should occur prior to, during, and after the discussion.
Table 1 outlines some of the steps that may facilitate good

Table 1 . Components of a Discussion About End-of-Life Care

1 . Making preparations prior to a discussion about end-of-life care

• Review previous knowledge of the patient and/or family.

• Review previous knowledge of the patient's attitudes and
reactions.

• Review your knowledge of the disease: prognosis, treatment
options.

• Examine your own personal feelings, attitudes, biases, and
grieving.

• Plan the specifics of location and setting: a quiet, private place.

• Have advance discussion with the patient or family about who
will be present.

2. Holding a discussion about end-of-life care

• Introduce everyone present.

• If appropriate, set the tone in a non-threatening way: "This is a
conversation I have with all my patients. . ."

• Find out what the patient or family understands.

• Find out how much the patient or family wants to know.

• Be aware that some patients do not want to discuss end-of-life
care.

• Discuss prognosis frankly in a way that is meaningful to the
patient.

• Do not discourage all hope.

• Avoid temptation to give too much medical detail.

• Make it clear that withholding life-sustaining treatment is NOT
withholding caring.

• Use repetition to show that you understand what the patient or
family is saying.

• Acknowledge strong emotions and use reflection to encourage
patients or families to talk about these emotions.

• Tolerate silence.

3. Finishing a discussion of end-of-life care

• Achieve common understanding of the disease and treatment
issues.

• Make a recommendation about treatment.

• Ask if there are any questions.

• Ensure basic follow-up plan and make sure the patient and/or
family know how to reach you for questions.

How Should We Talk about End-of-Life Care?

Because discussing end-of-life care with patients and
families is an important part of providing high quality care
in the ICU and for patients with chronic pulmonary dis-
eases, we should approach these discussions with the same
care and planning that we approach other important med-
ical procedures. For example, we should ( 1 ) put time and
thought into the preparations needed prior to holding this
discussion, (2) plan where this discussion should take place,

communication about end-of-life care, and these are de-
scribed in more detail below.

Making Preparations Prior to a Discussion

A common mistake that some clinicians make early in
their careers is to embark on a discussion about end-of-life
care with a patient or family without having made the
necessary preparations for the discussion. Clinicians should

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review what is known about the patient's disease process,
including the diagnoses, prognosis, treatment options, and
probable outcomes with various treatments. Clinicians
should identify gaps in their knowledge by systematically
reviewing this information and seek out the information
they need before they find themselves in a discussion with
patients or their families. Clinicians should also be aware
of the communication that has occurred with other team
members and of the plans for care established or agreed upon
by the primary physician responsible for the patient's care.

It is also important for clinicians to review what they
know about the patient and his or her family, including
their relationships with one another, their attitudes toward
illness, treatment, and death, and their prior reactions to
information about illness and death. If, for example, there
are family members who have had strong emotional reac-
tions to bad news, it may be helpful to mobilize the aid of
a family member or staff member, such as a social worker
or chaplain, who can support them through and after the
discussion with the clinician.

Finally, it is useful for clinicians to consider their own
feelings of grief, anxiety, or guilt prior to holding discus-
sions about end-of-life care with patients or families. This
may be especially important when the clinician has known
the patient or family for a long time, when the clinician
and patient or family have been through a lot together, or
when the clinician has some feelings of inadequacy about
the patient's condition or treatment. Acknowledging these
feelings explicitly can help the clinician avoid projecting
his or her own feelings or biases onto the patient or family.
In addition, the clinician's own feelings of guilt or inad-
equacy can lead him or her to avoid the patient or family
or to avoid talking with them about death. Reviewing these
feelings by oneself or with another clinician can be the
first step to becoming more comfortable discussing dying
and death with a patient or family. ^^

An additional step in preparing for an end-of-Iife dis-
cussion is to plan where the discussion will take place and
who will be there. Ideally, these discussions should take
place in a quiet and private room where there is some
assurance that people, phones, or pagers will not interrupt
the discussion. It should be a room that is comfortable for
all the participants, without a lot of medical machinery or
other distractions such as medical diagrams. All parties
should be sitting at the same level around a table or chairs
in a circle. It is best to avoid having a clinician sitting
behind a desk with the family in front of the desk. If the
patient can participate in the discussion but is too ill to
leave his or her hospital bed, efforts should be made to
make the room comfortable for everyone present.

The clinician, patient, and family should discuss, prior
to the scheduled conference about end-of-life care, who
should be present for the conference. In addition, the cli-
nician should make certain that all appropriate members of

the staff are consulted about whether they should be present,
including the medical staff, nursing staff, respiratory ther-
apists, chaplains, and trainees who have been involved
with the patient or family. Ideally, someone should take
responsibility for scheduling the conference at a time when
as many as possible can be present. It may be helpful for
some families to be told they can write down any ques-
tions they have prior to the scheduled conference to be
sure their questions are answered.

Holding a Discussion About Dying and Death

The first step in a discussion about dying and death is to
ensure that everyone participating in the discussion has
met everyone else present. Some staff members present for
the discussion may not have met all family members. Take
the time to go around the room to be sure everyone has
met everyone else and knows their role either on the staff
or in the family.

Introducing the issue of dying and death or end-of-life
care can be a crucial and difficult part of these discussions.
Often, by the time these discussions occur, everyone in the
room knows that the discussion will focus on how to help
the patient die in comfort and with dignity. But sometimes
patients or families may not be aware that this is a part of
the clinician's agenda. In those situations, the clinician
should make the patient or family as comfortable as pos-
sible talking about dying and death. In these latter situa-
tions, it may be helpful to frame the discussion by saying
that these are discussions that we have with all patients or
families in this situation.

Not everyone present will have the same level of un-
derstanding of the patient's condition, so it is often helpful
to first find out what the patient or family understands of
the patient's situation. This can be a useful way for the
clinician to determine how much information can be given,
the level of detail that will be understood, and the amount
of technical language that can be used. It can also be useful
in some settings to ask the patient or family how much
they want to hear on this day as a way to gauge how much
information and detail to give. Clinicians should be careful
to avoid unnecessary amounts of technical jargon and be
cautious about using technical jargon to avoid saying words
like "dying" or "death." Clinicians should also be cautious
about using physiologic detail to cover the uncomfortable
message about the patient's prognosis. For example, in the
ICU it is not unusual for clinicians to say things like "the
patient's blood pressure has stabilized on dopamine and
Levophed" in settings where a stable blood pressure on pres-
sor agents is of little or no relevance to the overall prognosis.
In this way, the clinician can get the positive rewards of
giving some good news, but may be misleading the family.

During these discussions, it is important to discuss prog-
nosis in an honest way that is meaningful to patients and

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Communicating about Advance Care Planning and End-of-Life Care

their families. For example, median survival is not very
meaningful to most family members. In discussing prog-
nosis, clinicians should also be honest about the degree of
uncertainty in the prognosis. Finally, it is also important to
provide honest information about the prognosis without
completely discouraging hope from those patients or fam-
ily members who would like to maintain their hope. This
can be a difficult balancing act for clinicians, but it is a
part of the art of holding these discussions. There are
several specific ways that clinicians can allow patients or
families to maintain their hope in the face of a poor prog-
nosis. First, the clinician can allow the patient or family
some time to get used to a poor prognosis. In the ICU
setting, sometimes this can take days; in the outpatient
setting this can take weeks, months, or even years. Re-
gardless of how much time it takes, it can be helpful to
patients or families if they are allowed to make this tran-
sition at their own pace. Second, the clinician can help the
patient or family redirect their hope and move them from
a hope for recovery to hope for some quality time together
or for a comfortable death without pain or dyspnea and
with as much dignity and meaning as possible.

An important goal of end-of-life discussions is to align
the clinicians' and the patient's or family's views of what
is happening to the patient. The discussions about end-of-
life care that are most difficult are ones in which the pa-
tients' or families' views and the clinicians' views are
dramatically different. Making the effort to discover these
differences and working to minimize them can be time
consuming, but it is usually time well spent as it can
greatly facilitate decisions about end-of-hfe care.

It is extremely important in a discussion about end-of-
life care that the patient and/or family understand that if
the decision is made to withhold or withdraw a particular
treatment, the clinicians themselves are not withdrawing
from caring for the patient. While this may seem obvious
to some clinicians, it should be stated explicitly to patients
and families to avoid any misunderstanding.

After discussing prognosis and treatment options and
the patient or family level of understanding, it is important
to spend some time exploring and listening to the patient
and/or family reactions to what was discussed. Clinicians
should understand that patients and families will react to
their perception of what was said and that they may not
react in the way the clinician expects. There are several
useful techniques that clinicians can use to explore pa-
tients' or families' reactions. First, it can be helpful to
repeat what patients or families have said as a way to show
that the clinician has heard them and to test the clinician's
understanding. This can be particularly useful when the
clinician and the patient or family have different views of
what is happening or what should happen. Second, it is
important to acknowledge emotions that come up in these
discussions. Whether the emotion is anger, anxiety, or

sadness, it is useful for the clinician to acknowledge the
emotion in a way that allows the person with the emotion
to talk about his or her feelings. In acknowledging such
emotions, it can be useful for the clinician to use reflection
to show empathy and to encourage discussion about the
emotion. For example, a clinician can say "It .seems to me
that you are very angry about the care that your father has
received; can you tell me why that is?" In this way, the
clinician can show empathy for a family member and al-
low that family member to talk about his or her feelings.
Finally, another technique clinicians can use in discussion
with a patient or family is to tolerate silences. Sometimes
it is only after what seems like a long silence that patients
or family members will ask a particularly difficult ques-
tion or express a difficult emotion.

How Should We Finish a Discussion
about End-of-Life Care?

Prior to finishing a discussion about end-of-life care,
there are several steps that clinicians should take. First, it
is important that clinicians make recommendations during
the discussion. With the increasing emphasis on patient
autonomy and surrogate decision-making, there may be a
tendency for some clinicians to describe the treatment op-
tions to a patient or family but to then feel like they should
not make a recommendation.''^ On the contrary, it is im-
portant that clinicians offer their expertise to patients and
their families, and part of offering their expertise is mak-
ing a recommendation. This is especially important in dis-
cussions with family members concerning withholding or
withdrawing life support. It is a disservice to leave a fam-
ily member feeling like they were alone in making the
decision to "pull the plug" on a loved one in situations
where ongoing life-support therapy is unlikely to provide
significant benefit.

Prior to finishing a discussion about end-of-life care,
clinicians should summarize the major points and ask pa-
tients or family members if there are any questions. This is
a good time to tolerate silence, as it may take some time
for the uncomfortable questions to surface.

Finally, before completing a discussion about end-of-
life care, clinicians should ensure that there is an adequate
follow-up plan. This often means a plan for when the
clinician will meet with the patient or family again and a
way for the patient or family to reach the clinician if
questions arise before the next meeting.

How Can We Help Families with the Decision to
Withhold or Withdraw Life-Support?

When families are faced with the decision of whether to
withdraw life-support for a loved one, there are several
ways the clinicians can help, as summarized in Table 2.

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Table 2. Helping Families Make Decisions about Withdrawing Life-
Support in the Intensive Care Unit

• Focus the family on what the patient would want, not what the
family wants.

• If life-sustaining therapy is to be withdrawn, emphasize that:

— Life-sustaining therapy can not reverse the underlying disease

process.
— Withdrawal of life-sustaining therapy allows the natural course of

the disease to occur.
— Aggressive palliative therapy will be used to ensure that the

patient is comfortable.

• Some families need time to adjust to withdrawing life-sustaining
therapy; such time can be an important use of intensive care unit
resources.

• Educate the family about what will probably happen after life-
sustaining therapy is withdrawn:

— Discuss the probable time to death as well as the variability and
uncertainty.

— Discuss agonal respirations and myoclonus.

• Elicit family preferences about extubation.

• Mention organ donation, but leave discussion to the "professionals."

First, it is crucial that families understand the basic prin-
ciple of surrogate decision-making. The family member is
being asked what he or she thinks the patient would want
if the patient were able to speak for him or herself, because
that family member is generally the one in the best posi-
tion to determine what the patient would want. Clinicians
should make it clear to family members that they are not
being asked to decide what they (the family members)
want for the patient or even what they would want if they
were in the patient's situation. Making this clear to families
can be extremely useful for the family member who feels torn
between deciding to continue life-sustaining therapy because
they do not want their loved one to die and deciding to stop
life-sustaining therapy because they feel the loved one would
not want this treatment in this circumstance.

Sometimes clinicians may arrive at the decision that with-
drawing life-sustaining therapy is in the patient's best interest
before the family does. These situations can be very conten-
tious and can be a source of conflict between the ICU clini-
cians and the family. Often in these situations the family
needs time to accept and understand the patient's prognosis
and to come to terms with the loss of a loved one. Allowing
families the time to make these adjustments can be an im-
portant use of ICU resources. Furthermore, pushing families
to make the decision to withdraw life-sustaining therapy be-
fore they are ready can set up an antagonistic relationship
between clinicians and families and can erode the confidence
that families have in the clinicians. Once this confidence is
eroded, it is often difficult to regain.

Frequently, part of the decision for a family member is
whether the patient would want to be resuscitated in the
event of cardiac arrest. In helping families make this de-
cision, it is important that Advanced Cardiac Life Support

(ACLS) not be broken into components, but instead be
presented as a package. Breaking ACLS into components
(chest compressions, anti-arrhythmic drugs, pressor agents,
intubation) makes these decisions unnecessarily complex
and can lead to an absurd resuscitation status such as com-
pressions and all drugs, but no intubation. TTiere are cir-
cumstances where patients are already intubated or receiving
pressors and the decision is made to withhold resuscitation,
but in general ACLS should be viewed as a single package
that will be used to the extent indicated, or withheld.

There are several reasons why discussing withholding
ACLS and cardiopulmonary resuscitation are different than
for other treatments. First, many families have unrealistic
expectations about the efficacy of cardiopulmonary resus-
citation and assign this treatment enormous symbolic sig-
nificance. ^^ Second, discussion about situations in which
ACLS is not indicated or desired can open the door to
discussion of withholding other ICU treatments. Finally, it
is important that all members of the team understand that
withholding cardiopulmonary resuscitation does not neces-
sarily mean that other ICU treatments are not indicated.''''

If the dei^ision is made to withdraw life-sustaining ther-
apy, clinicians should emphasize to family members that
life-sustaining therapy was not able to reverse the under-
lying disease and the removal of life-sustaining therapy is
allowing the disease to take its natural course. In addition,
clinicians should reassert that aggressive therapy in the
form of palliative care will be provided to ensure the pa-
tient's comfort.

If families decide to withdraw life-sustaining therapy, it
is important that clinicians teach them about this process.
This should include discussing the probable time from
life-support withdrawal to death and the variability and
uncertainty in determining this time. Families are often
worried about the patient suffering, and clinicians should
discuss the options available to prevent pain and suffering
during the withdrawal of life-sustaining therapy. Clini-
cians should also discuss the possibility of agonal respi-
rations and myoclonus so that family members are pre-
pared. For intubated patients, clinicians should elicit family
preferences about extubation and discuss the advantages
and disadvantages of extubation.'^'

What Role Does Medical Futility Play in Discussing
End-of-Life Care with Patients and Families?

It can be helpful for clinicians to have a framework to
think through the indications for initiating or continuing
life-sustaining therapy before approaching the patient or
family. The principle of medical futility can be useful in
this framework, provided that it is used in a precise and
careful way. The principle of medical futility states that a
therapy is futile if there is no likelihood or a very low
likelihood that the therapy will result in a successful out-

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Communicating about Advance Care Planning and End-of-Life Care

1. Elicit patient's wishes about therapy and outcomes.

2. Formulate those wishes into appropriate therapeutic goals (such as discharge to home with
independent living or survive until granddaughter is bom).

Treatment Decision:

3. Determine whether treatment can achieve at least one reasonable therapeutic goal.

Medical Futility

4. Would the patient want the treatment?

Discuss with patient/family

No treatment by patient/family request

Yes

Provide treatment and periodically reassess goals and indications

Fig. 1. A framework for discussing specific interventions and a view of wliere medical futility fits.

come.*''*2 There is considerable controversy about the role
of this principle in making unilateral decisions,*"* but this
principle can be useful in a framework for discussing the
use of specific treatments. One approach to such a frame-
work is outlined in Figure 1. First, the clinician should
elicit from the patient or family the patient's wishes for
therapy and outcome. These wishes should be formulated
into reasonable therapeutic goals. Often this goal is inde-
pendent living at home or the ability to interact in a mean-
ingful way with family and friends, but for some patients
a goal might include surviving until the birth of a child.
Once the goals have been elicited, the clinician should
use published literature and clinical experience to deter-
mine whether the treatment in question can achieve any of
the goals. If the treatment can achieve one of the goals,
then the patient and/or family should be asked if the pa-
tient would want the treatment. If, however, treatment can-
not achieve one of the goals, the treatment is medically
futile and, in general, should not be offered. Once this
determination is made, the clinician should review the
basis for this determination to be sure that there are ade-
quate data or clinical experience to support this determi-
nation. Prior research has shown that some physicians make
a determination of medical futility in settings where it does
not apply. '^ If the determination of medical futility stands
up to this scrutiny, this therapy need not be offered to

patients or families, but the determination of futility should
be discussed with them. In most cases, patients or families
will agree with this determination and will appreciate not
being asked to choose to forego a treatment that is not
indicated. However, in some circumstances patients and
families will not agree with foregoing a futile treatment. In
these situations, a process should be initiated to reconcile
these differences, as described in a paper from the Amer-
ican Medical Association,*^ and the treatment should be
offered until differences can be reconciled.

Understanding Our Own Discomfort
Discussing Death

Discomfort in discussing death is universal. This is not
a problem unique to physicians, nurses, RTs, or other health
care providers, but has its roots in our society's denial of
dying and death. Medical schools and nursing schools have
only recently begun to teach students how to help patients
and families through the dying process, and still do so in
a limited way.''* Major medical textbooks have had scant
information about end-of-life care.*^ During their educa-
tion, RTs learn very little about the challenge of caring for
patients at the end of life. For all these reasons, it is not
surprising that many clinicians have difficulty talking with
their patients and families about end-of-life care. Further-

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Communicating about Advance Care Planning and End-of-Life Care

more, the medical culture is one of using technology to
save lives, and for many clinicians, discussing dying and
death is even more difficult in this technologic, aggressive
care setting. To compound this difficulty, clinicians can
also feel that a patient's death reflects poorly on their skills
as clinicians and represents a failure on their part to save
the patient's life.

It is important for clinicians to recognize the difficulty they
have discussing dying and death. If clinicians acknowledge
this difficulty, they can work to minimize some of the com-
mon effects that such discomfort can have. For example,
discomfort discussing death may cause clinicians to give
mixed messages about a patient's prognosis or to use euphe-
misms for dying and death or may even cause clinicians to
avoid speaking with a patient or a family. Recognizing this
discomfort and being willing to confront it is the first step in
overcoming these barriers to effective communication about
dying and death with patients and their families.

Summary

Discussing dying and death with patients and their fam-
ilies is an extremely important part of providing good
quality care for patients with chronic pulmonary diseases
and families of patients in the ICU. While there is little
empirical research to guide clinicians in determining the
right time or the most effective way to have these conver-
sations, there is a developing experience and an increasing
emphasis on making this an important part of the care we
provide and an important part of training for students.
Much like other medical skills, providing sensitive and
effective communication about end-of-life care requires
training and practice as well as planning and preparafion.
While different clinicians may have various approaches and
may change their approaches to match the needs of patients
and their families, this article reviews some of the fundamen-
tal components to discussing end-of-life care in hospital and
outpatient settings that should be part of the care of most
patients with life-threatening illnesses in the ICU.

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Discussion

Tudy Giordano: Didn't your graph
show that the nurses ranked "team co-
ordination" as being number two?

Curtis: Yes.

Tudy Giordano: I find that inter-
esting. Many times clinicians feel sty-

mied by the amount of information
they can share with a patient. So when
I saw the graph, it validated that health
care professionals want to be team mem-
bers. You're there at the patient's bed-
side. You're there with them dying, pro-
viding the care, administering the
therapy. You develop an emotional bond

with your patients. I can't tell you how
many times I wanted to say, "If I could
only tell you more about your condi-
tion/disease process, it would help you
in your decision." But I couldn't be-
cause of the physician's reluctance
to share that information with his
patients. However, in the SUPPORT

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Communicating about Advance Care Planning and End-of-Life Care

study, nurses who were empowered
to provide decision making informa-
tion often met resistance from fam-
ily members and patients as well.
But I thought that was interesting
that nurses did rank team coordina-
tion number two, right behind emo-
tional support.

Curtis: 1 think you raise a really
important point and one that I discuss
a little bit more in the manuscript than
I have here. John [Hansen-Flaschen]
brought this up too, about how there
may be many members of the team
who can help us and contribute to this
kind of communication. Even though
I've presented it in this way a little
bit, this isn't a one-shot deal. This is
something that happens over time. But
1 think that we need to build a better
model (or more successful model) for
allowing this communication to happen
with multiple members of the team.

One component of that is to make
sure everyone is on the same page in
terms of what we're offering the pa-
tient, what the prognosis is, and what
the patient wants. It's a real challenge
for us to develop systems and models
that allow multiple team members to
contribute in this kind of communica-
tion. You're right. There have been
several studies,'- particularly with
nurses, that have shown that frustra-
tion of feeling like their hands are tied
and not being able to say the things
that most need to be said. It's a really
difficult issue.

REFERENCES

1. Asch da. The role of critical care nurses in
euthanasia and assisted suicide. N Engl J Med
1996;334:1374-1379.

2. Asch DA, Shea JA, Jedrziewski MK, Bosk
CL. The limits of suffering: critical care
nurses' views of hospital care at the end of
life. Soc Sci Med 1997;45:1661-1668.

Tudy Giordano: I think you'll see
a change in that, too, as the palliative
care units become vogue in acute care
settings. Maybe a team philosophy
from hospice will move into the acute
care setting. But it's very frustrating

as a clinician to know in your heart
that you want to discuss something
with a patient and help him with an
end-of-life decision, and you can't. It's
a disservice to the patient.

Curtis: I agree. I think some phy-
sicians may resonate with that too, in
being put in situations where an on-
cologist, for instance, or a consultant
may have a very different view of
what's going on. I've certainly felt that
way as well, when I wanted to say
something very different than the per-
son who's winding up providing the
primary care wanted to say to the pa-
tient.

Tudy Giordano: And that does such
a disservice to the patients and families.

Burt: Randy, you invited discussion
about medical futility, so I'll take the
invitation. It's, of course, an incredi-
bly complicated question. In the way
that it is surfacing (or resurfacing) in
a lot of debate, it is understood in some
quarters as a kind of reassertion of
physician authority and control. I can't
believe that you mean it in that way,
but that sounds like the underlying im-
plication. I want to invite you to dis-
cuss what's motivating you, what you
think you're accomplishing by stress-
ing physician judgment about futility,
and maybe using the example of this
patient haranguing you.

Because there was an instance when,
in your view, she didn't have a rea-
sonable chance of success with this
surgery, but she was asking for it. Un-
less you could tell her there was zero
percent chance of success, I'd be will-
ing to bet that she would persist in
wanting the surgery. But you can al-
most never say "zero percent." There's
always going to be some probabili-
ty — say 5%. Lots of patients will say
"I'm going to be in that 5%." In these
circumstances, there's a struggle be-
tween respecting patient autonomy and
good sense. My question is, what is it
that you think you're accomplishing
by using medical futility as a princi-

ple here, and how would it play out in
a case like this?

Curtis: You articulated what it is
that I think we're accomplishing, and
that is to not be in a position of offer-
ing therapies that are not indicated,
that really have nothing to offer. It's
been described as a false option, in a
sense. I think the difficult point comes
down to when you make decisions
about whether a therapy is indicated
or whether it offers a reasonable
chance. I think it's a difficult topic,
and yet I think it's something we do in
medicine on a daily basis.

When it comes to CPR it's a more
difficult argument to make, but, for
example, the surgeons do this all the
time. They see someone who's septic
and in the ICU and they say, "This
may well be an intraabdominal catas-
trophe, and we have nothing to offer
this person, because we believe that,
if we take this person to the operating
room, they will die on the operating
table."

We make this decision all the time
about bone marrow transplant, for ex-
ample. In fact, lung volume reduction
surgery has a set of criteria that peo-
ple have to meet in order to be eligible
for it in most centers. I think what
we're doing by thinking carefully
about medical futility is that we're not
putting ourselves in a position where
we're offering treatments that don't
offer benefit to the individual.

Burt: The concern that I have is
that in the old days doctors just made
this judgment on their own. We have,
for a lot of reasons, abandoned that
and now stress not just autonomy but
honesty on the part of physicians.
When you say you reach a judgment
that a particular therapy has nothing
to offer, I can understand that. If some-
one has lung disease and they say,
"Amputate my leg," that has nothing
to offer. But my suspicion is that lots
of the judgments that are sensibly be-
ing made, are probabilistic judgments
in which the physician is saying, "In

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Communicating about Advance Care Planning and End-of-Life Care

my experience, this is highly unlikely
to do anything." But the physician is
not sharing that kind of formulation
with the patient. They're just saying,
"This will do no good at all." Do you
prize honesty in this matter? Are you
saying that you've got to say to pa-
tients, "The outcomes data are uncer-
tain here, it's not well studied; maybe
you would be an outlier, but my judg-
ment is that it's not worth it"? But
saying that, of course, turns the deci-
sion back to the patient.

Curtis: To use the CPR as an ex-
ample, the way I approach this is that
I go to the patient. First of all, I do
prize honesty. I think it's very impor-
tant that as we make these determina-
tions, we talk to patients and family
about them. But I go to the patient
and/or family, and I say, for instance,
that in your situation with metastatic
cancer and organ failure, CPR will not
provide any benefit to you. The stud-
ies have been done, and we know it
will not work in this situation. The
honesty comes in giving that informa-
tion. The difference in that approach
is that I'm not offering the therapy,
CPR, to the individual patient or fam-
ily. If the patient and/or family says,
"No wait, I don't agree with that. I
want that even if you don't think it's
going to be helpful," I, personally,
don' t trump their decision. Then I think
we go into a negotiation phase and an
education phase, hopefully, in which
we try to come to some resolution.

Benditt: I wanted to go back to the
team concept about bringing these
things up. I'll use ALS [amyotrophic
lateral sclerosis] as an example, since
I work with those patients a lot. Cur-
rently, we have a neurology nurse prac-
titioner who works with us and a very
skilled respiratory therapist. Gener-
ally, when we have these discussions
all of us will be in the room, and it's
helped me. Not only do I think it's good
to include everyone, but it's helped me
dramatically to remove what was get-
ting to be an enormous emotional bur-

den, feeling like I was with every one
of these patients dealing with this is-
sue. So I think not only do you get a
little bit different perspective, but it
does help the individual physician to
remove the weightiness of these dis-
cussions.

Curtis: A good point. Also, I think
it was John [Hansen-Flaschen] who
mentioned about how when patients
talk to physicians they often feel that
the physician has all this prognostic
information, and it may actually act as
a barrier to having more honest and
open communication. I think that's a
really interesting point, and it may be
one reason that having other members
of the team be a part of this may be
really helpful.

Heffner : Randy did a wonderful job
presenting a model wherein forthright,
honest, and accurate information was
presented to patients and families so
they can make the best decisions and
contribute to joint decision-making.
That's why I think it's somewhat in-
congruent with what you said when
you made the statement that we
shouldn't break up ACLS. ACLS is
an arbitrary combination of interven-
tions that we define as "ACLS." Pa-
tients don't necessarily see it that way.
In my experience, when I talk to
patients about interventions, they don't
care if we group life support interven-
tions as a package: they want to know
what the likelihood of outcomes are
and the benefits and risks of each in-
dividual life-supportive intervention.
I've had many patients with COPD
and brittle-boned chests who are will-
ing to be intubated for respiratory fail-
ure, but wouldn't be willing to have
chest compressions for an episode of
asystole.

Curtis: I don't mean to say that one
of those interventions can never be
offered without the other. What I mean
to say is that in the situation of an
arrest, a code — where we're talking
about what are we going to do if your

heart stops — in that situation I think it
ought to be a package deal. But there
may be situations for acute-on-chronic
respiratory failure where we want to
do mechanical ventilation but not CPR.
There are certainly plenty of people in
the ICU who are mechanically venti-
lated, and we decide we don't want to
do CPR for this person. There may be
situations where someone who has a
do-not-resuscitate order comes to the
ICU for dobutamine anyway. So there
may be certain individual circum-
stances where we want to offer one of
those treatments but not necessarily
use others. For an arrest protocol, what
do the nurses do if this person arrests?
That's where I think it's most useful
to consider it a package deal.

Heffner: Some centers use the item-
specific do-not-resuscitate order sheet
to avoid the communication problem
of code status when asking patients to
pick and choose between different life-
supportive interventions.

Curtis: Right. That's what I'm try-
ing to avoid.

Heffner: The challenge may be on
us to develop protocols wherein we
improve that communication. Some
centers compartmentalize life-sup-
portive interventions during codes and
their resuscitative protocols work
pretty well.

Fins: Randy, that was wonderful.
There's nothing like practical wisdom.
It was very helpful. But I was a little
surprised when you were reviewing
Larry Schneiderman's work that you
came down on the quantitative versus
qualitative futility side. Resonating a
little with what Bo [Burt] said, I felt
that perhaps the qualitative definition
would be more akin with your philo-
sophical orientation, specifically when
he talks about effect versus benefit and
the importance of endorsing therapies
that are beneficial and not simply phys-
iologic, like raising blood pressure

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Communicating about Advance Care Planning and End-of-Life Care

with dopamine but not improving cog-
nition. His framework for benefit is
that it's a patient-centered benefit.

I would add that it seems to me
that's more consistent with a pallia-
tive-care ethos and that what consti-
tutes a benefit is constructed with the
doctor and the patient in collabora-
tion. Sometimes that kind of consen-
sus doesn't work. Then you have a
futility dispute. Instead of trying to
parse it out, I completely agree with
the ALS issue the way you raise it.
Instead of trying to solve it techno-
logically, it's much more fruitful to
see it as a symptom of a deeper prob-
lem and try to fulfill what the patient
is requesting in a different way. Be-
cause that request for lung reduction
therapy may be from profound despair
about death, depression, or an unre-
solved conflict with a spouse.

It seems to me that those things are
really about utility versus futility. We
spend a lot of time talking about things
that won't work, but there are a lot of
interventions out there that will work
in a palliative sense. In my experience
that seems to be a much more fruitful
way to go.

Curtis: I think that's right. The
framework in which I put medical fu-
tility, the first thing on there was to
elicit patient's wishes. I gave an ex-
ample of surviving to see a grand-
daughter bom. Some patients' fami-
lies would tell us that having the patient
respire, having her just alive, was an
outcome that was important to the pa-
tient and family. That would be one
that some people may have more trou-
ble with. But I agree with you: the first
step is to elicit from patients and fami-
lies what the most important values are.

Hansen-Flaschen: Bo [Burt], you
asked. "What drives doctors on this
futility issue? Why don't we let go of
this?" I don't think we've been very
good at communicating why this is so
important to the medical community,
why we hold on to it so hard. So I'm
going to be very graphic here.

Most doctors, nurses, and respira-
tory therapists are inherently gentle
people. We don't like to brutalize the
body of a dying person for no reason.
The work we do in the intensive care
unit is a physical assault and an inva-
sion of privacy that would be an out-
rageous felony under almost any other
circumstance. In fact, it feels like that
while we're doing it. When we're put-
ting tubes in and lines in and causing
bruises and swelling and obvious
wincing pain, we want to have some
sense that the person lying in the bed
might possibly benefit from what
we're doing at the end of it. When we
lose that faith and belief and hope,
what we're doing is indistinguishable
in our minds from whipping a dying
burro. We hate to do that.

What drives the futility is the hate
of that activity, and what restrains us
is one simple thing, which is fear of
litigation and prosecution. That's gen-
erally an overriding consideration in
between these two very unpleasant is-
sues. So I don't see any soon or near
resolution to this problem. We have to
keep reminding ourselves that we're
fallible in the work we do and that
autonomy is a fundamental issue in
this country. But we also have to com-
municate to those who view this from
a distance how intensely distasteful fu-
tile intensive care is for us who do it.

Manning: I just want to get at this
issue of futility again from the quan-
titative aspect. You defined futility as
a less than 1 in 100 chance of achiev-
ing your goal, whatever that goal might
be. I wonder how often we're actually
in a situation where we can accurately
say that there's less than a 1 in 100
chance of achieving that goal. You
gave the example of the surgeon say-
ing, "I don't care if you have an acute
abdomen, there's nothing we can do
to help the situation." But I wonder if
there are really data upon which
they're basing that, or whether it's
some gestalt, and if you asked another
surgeon, he'd say, "Yes, this is a pretty

dismal situation, but it would be hard
to say there's not a 1 in 100 chance."
So let's suppose that volume reduc-
tion surgery proves to be useful in a
broad population of patients. Can you
really say to your patient, "No, there's
not a 1 in 100 chance (assuming that
volume reduction surgery proves to
be useful) that this will help relieve
your dyspnea." So I think coming up
with that quantitative benchmark of
less than 1 in 100, is difficult, and I
think that's often why there's disagree-
ment among physicians about quanti-
tative estimates of survival.

Curtis: You're absolutely right.
That's the reason I showed a slide
about misinterpreting futility. If we are
going to use it, we need to be very
careful. The circumstances where we
can do it based on data are very small
in number. For CPR, I think there are
two or three clinical situations where
there's good data to say that the chance
is less than 1 in 100. and the confi-
dence intervals around that chance are
sufficiently small that we can have
faith in those estimates. If we're do-
ing it based on data, beyond those cou-
ple of situations, I would say we're
misapplying it.

Rubenfeld: For the book we're ed-
iting on end-of-life care in the ICU,'
there are a number of disease-specific
sections. We challenged the authors
of these disease-specific sections to
really go out and provide the data for
futile situations that you suggest. Ex-
cept in rare cases, the authors found
this nearly impossible.

REFERENCE

1 . Curtis JR. Rubenfeld GD, editors. Managing
death in the ICU: the transition from cure to
comfort. New York: Oxford University
Press: 2000.

Curtis: There are a lot of dismal
situations, but there aren't a lot where
there are quantitative data that say
there's less than a 1 in 100 chance.

Respiratory Care • November 2000 Vol 45 No 11

1397

Communicating about Advance Care Planning and End-of-Life Care

Levy: I just want to throw out a
little grenade here. I notice how we as
clinicians immediately start getting de-
fensive about the futility issue. We're
already feeling uncomfortable. Poor
Randy [Curtis] is saying, "Well, of
course, I believe in finding out what
the patient's wishes are, etc."

I guess I have to ask, and this is
from some conversations that we've
all had over the last year or two,
whether the model of patient auton-
omy that seems to have become so
fundamental in the American model
(as opposed to the European model) is
not, in fact, flawed. It leads us to do
exactly what Randy described, which
is abandon the patient during decision-
making. It's fueled by everyone's fear
of litigation, but it goes much deeper
than that, which is we're afraid to make
those recommendations. The extreme
example of the recommendation is our
personal definition of futility. But
we've just abandoned the whole pro-
cess completely.

Deborah Cook and Fran9ois Le-
Maire are writing a piece called "Pa-
rentalism Versus Patient Autonomy"
for a supplement of Critical Care Med-
icine [in press, 2001]. I think that, at
least in my view, coming to the mid-
dle, somehow, and getting away from
this addiction to patient autonomy may
be the next step for us as clinicians in
end of life care.

Curtis: I agree with that. I don't
want to give up patient autonomy. It's
extremely important. I know you know
that: I just think that's the foundation
upon which we build, but there may be
situations where it has been taken too
far. Would you agree with that, Mitch?

Levy: Absolutely. Sure.

Curtis: I just wanted to make that
clear for the record.

Burt: For the record, too, for what
it's worth, I am a minority among law-

yers and law professors, because I
agree with you about the limits of au-
tonomy and the way autonomy can be
used for patient abandonment and the
sloganeering that's involved in it. But
the trick is to find that middle ground.
I think actually there is agreement
around the table, except that the only
point I was trying to make was that
it's very easy for these to become pen-
dulum swings, and the excesses of au-
tonomy, which were a response to the
excesses of medical authoritarianism,
should not inspire a return in a dis-
guised way. That's why my call is just
for honesty about this. And I would
even say honesty in communicating
to patients about exactly what the
source of judgment is. I am quite pow-
erfully moved by your observation —
not, "Well I think it's a low chance of
success." And the patient would then
say something like, "So you don't want
to waste the money, right?" and start
quarreling with the data.

But the perspective that you put — I
rarely, almost never, hear that from
physicians. I think that's incredibly
powerful about the damage that you
do, the aggression that's involved —
the harm that you yourself feel that
you are committing, and wish not to
harm. I must say, speaking as a po-
tential patient, that would move me
tremendously in a way that statistics
wouldn't and certainly costs wouldn't,
but just the idea that this would be
hurtful to you, and not in just some
abstract way, because I'd have to beat
up on you and cut you up and invade
you, and it's hard for me to do that.
That is something that I think very
few physicians admit to themselves,
about how hard it is to invade other
people's bodies. Your admission of
coming close to felonious activity — I
just think this is liberating, actually.

Fins: I just want to comment that
Peter Marzuk in the mid-1980s wrote
a "Sounding Board" in the New En-
glandJuurnal of Medicine called "The

Right Kind of Paternalism," which 1
think was the first article to say that
maybe the autonomy-driven ethos had
gone too far.' There's a wonderful
book by Howard Brody- called The
Healer's Power that distinguishes
(and I think this is very important) the
exercise of physician power, the kind
of thing John's talking about — robust
communication, offering an opinion
versus imposing your belief system in
a paternalistic way.

So we shouldn't say that when a
physician offers an opinion he's being
paternalistic. If he or she has listened
to the patient's narrative and tailored
the response and is open to moving
the curve up and down, then it's an
appropriate use of power. I think pa-
ternalism is probably bad, because it's
very unilateral. In this framework,
which 1 do not agree with, every pa-
tient with pulmonary fibrosis is going
to get the same recommendation irre-
spective of their individual life narra-
tive. But the physician who exerci.ses
appropriate physicianly power will tai-
lor the response. So that book by Brody
is a terrific analysis of this problem.
It's surprising that it's not gotten as
much credit as it should.

REFERENCES

1. Marzuk PM. The right kind of paternalism.
N Engl J Med 1985;313:1474-1476.

2. Brody H. The healer's power. New Haven:
Yale Press; 1992.

Curtis: Ijust want to make one quick
comment. While I agree completely
with the way John [Hansen-Flaschen]
presented the scenario, I think we also
have to be careful when we teach this.
A lot of times I find residents using
this notion of breaking ribs and bru-
talization to talk patients out of CPR,
and that's one instance where I think
it gets carried too far, because most
patients don't feel brutalized by CPR
when it's happening. 1 think we need
a balance there.

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Respiratory Care • November 2(XX) Vol 45 No 1 1

Withdrawing Life-Sustaining Treatment in the Intensive Care Unit

Gordon D Rubenfeld MD MSc

Introduction

Principles of Withdrawing Life-Sustaining Treatments

The Decision to Withdraw Life-Sustaining Treatments

Appropriate Setting and Monitoring

Sedation and Analgesia

A Plan for Withdrawal

Withdrawing Mechanical Ventilation
Documentation
Evaluation
Special Cases

Withdrawal of Mechanical Ventilation When the Patient May Survive

Survival Despite Withdrawal of Life-Sustaining Treatment

The Do-Not-Resuscitate Order
Summary and Future Directions

[Respir Care 2000;45( 1 1 ): 1 399-1407] Key words: end-of-life care, palliative care,
critical care, respiratory care, dyspnea, intensive care units, withdrawal of life support.

Introduction

Most deaths in intensive care units (ICUs) occur after
decisions to limit or withdraw life-support.'-'' Despite an
extensive literature on whether to withdraw life-support,
little attention has been given to how to withdraw it.''-'^
For example, a recent edition of a critical care textbook
exhaustively covers the ethical and legal aspects of life-
support withdrawal, but makes no recommendations for
carrying it out.'' Because of their important role in the

Gordon D Rubenfeld MD MSc is affiliated with the Division of Pulmo-
nary and Critical Care Medicine. Harborview Medical Center, University
of Washington, Seattle, Washington.

Adapted with permission from Rubenfeld GD, Crawford SW. Principles
and practice of withdrawing life-sustaining treatment in the intensive care
unit. In; Curtis JR, Rubenfeld GD, eds. Managing Death in the ICU; The
Transition from Cure to Comfort. New York: Oxford University Press;
2000.

A version of this paper was presented by Dr Rubenfeld during the Re-
spiratory Care Journal Conference, Palliative Respiratory Care, held
May 19-21. 2000 in Cancun. Mexico.

Correspondence: Gordon D Rubenfeld MD MSc, Pulmonary and Critical
Care Medicine. Harborview Medical Center. Box 359762. .325 Ninth
Avenue. Seattle WA 98104. E-mail: nodrog@u. washington.edu.

care of critically ill patients, respiratory therapists (RTs)
participate daily in the withdrawal of life-sustaining treat-
ments in the ICU. Almost nothing is known about the
specific role RTs play, and there is very little written ma-
terial to guide their practice.

Many practical questions about withdrawal of life-sup-
port are perplexing and controversial:''* Should the endo-
tracheal tube be left in place? Should ventilatory support
be weaned slowly or quickly? When should sedation be
increased? How can the concerns about relieving suffering
be reconciled with fears of killing the patient? Should
neuromuscular blockade be discontinued? These questions
are important because clinicians face them frequently and
are still confused by the goals and process of withdrawing
life-support and because patients who die after withdrawal
of life-support may receive inadequate pain relief '""•'*

Principles of Withdrawing
Life-Sustaining Treatments

In this era of evidence-based medicine, there is a lack of
data to direct clinicians in the optimal management of dying,
critically ill patients. Despite the lack of data on optimal
management of some aspects of withdrawing life-sustaining
treatment, a general consensus exists on the ethical and clin-
ical principles that should guide this care (Table 1 ).

Respiratory Care • November 2000 Vol 45 No 11

1399

Withdrawing Life-Sustaining Treatment in the Intensive Care Unit

Table 1 . Principles of Withdrawing Life Support

1. The goal of withdrawing life-sustaining treatments is to remove
treatments that are no longer desired or do not provide comfort to
the patient.

2. Withholding life-sustaining treatments is morally and legally
equivalent to withdrawing them. Actions whose sole goal is to
hasten death are morally and legally problematic.

4. Any treatment can be withheld or withdrawn.

5. Withdrawal of life-sustaining treatment is a medical procedure.

6. Corollary to 1 and 2: When circumstances justify withholding an
indicated life-sustaining treatment, strong consideration should be
given to withdrawing current life-sustaining treatments.

Understanding that the goal of withdrawing life-sustain-
ing treatments is to remove unwanted treatments rather
than to hasten death is essential in clarifying the distinc-
tion between active euthanasia (providing drugs or toxins
that hasten death) and death that accompanies the with-
drawal of life support in the ICU. There is no doubt
that withdrawing unwanted life-sustaining treatments —
compared to continuing them — will hasten death; how-
ever, ethicists draw a line between withdrawing life-sus-
taining treatments when the expected but unintended ef-
fect is to hasten death and providing a treatment with the
sole intent of hastening death.

These recommendations are based on the premise that
the withdrawal of life-sustaining treatments is a clinical
procedure, and, as such, merits the same meticulous prep-
aration and expectation of quality that clinicians provide
when they perform other procedures to initiate life support.
Therefore, the steps clinicians take when they withdraw life-
support should parallel the steps they take when they perform
a thoracentesis, lumbar puncture, or appendectomy. By pro-
viding a familiar framework to guide clinical practice and
proposing a protocol for the procedure, we hope to improve
the quality of care to patients at the end of life.

The Decision to Withdraw Life-Sustaining Treatments

Ethical and legal guidelines for decisions to withdraw
life-sustaining treatments are well established and have
been presented elsewhere.' ■'-20 Competent, informed pa-
tients may refuse any life-sustaining treatment. For incom-
petent patients, appropriate surrogates may refuse life-sus-
taining treatments based on written advance directives or,
in almost all states, the patient's previously stated wishes,
values, or best interests. In some circumstances it is ethi-
cally appropriate for physicians to limit treatment in the
absence of a surrogate or advance directive. 2'

There should be consensus among the health care team
about the decision to withdraw life-support. Frequently,
members of the critical care team will reach the conclusion

to limit life-sustaining treatment at different times. While
the attending physician must take ultimate responsibility
for the decision, it would be imprudent to insist on a plan
in the face of persistent, thoughtful disagreement by mem-
bers of the health care team. Withdrawing life-support is
seldom an emergency decision and time should be taken to
resolve disagreements among the staff and with family
members. Strategies to improve consensus include allay-
ing fears of legal liability, encouraging face-to-face dis-
cussions between health care professionals who disagree
on the prognosis, eliciting the views of clinicians who are
providing bedside care, and consulting with a senior cli-
nician or ethics committee.

When engaging in these discussions, clinicians should
temper the certainty of their convictions about the utility
of life-sustaining treatment with the knowledge that a large
body of data shows that clinicians apply personal values
and biases rather than ethical principles and outcome data
when making clinical decisions.^- -'' All team members,
particularly those in direct patient care roles, should feel
that they have had meaningful input into the final plan. It
can be particularly stressful for RTs who have helped to
care for a chronically critically ill patient to be called to
withdraw mechanical ventilation without being able to par-
ticipate in any aspect of the decision or planning.

Appropriate Setting and Monitoring

Transforming the ICU into a suitable place to fulfill the
new goals of terminal care is not a simple task. The ICU
and its staff are poised to respond to minor physiologic
changes. Comfort, dignity, family access, and quiet may
not always receive the highest priority. Particularly when
family members and friends will be in attendance, the goal
should be to have the patient lying comfortably, cleanly,
and privately in a quiet room devoid of technology and
alarms. If possible, the patient should be separated from
the general commotion of the ICU.

All electronic monitoring and alarms should be removed.
Because the lifesaving role of the ICU is so symbolically
linked to physiologic monitoring, removing these devices
clearly indicates that the goals of care have changed. Fam-
ilies who have become accustomed to sitting vigil by the
waxing and waning pulse oximetry can now focus their
attention appropriately on the needs of the dying patient
and their own grief.

Finally, the purpose of monitoring patients as life sup-
port is withdrawn is to detect discomfort and to identify
the time of death. These can be done without sophisticated
electronic monitors. Visitation should be liberalized to the
extent that it does not interfere with the delivery of care to
other patients. Children should be allowed to visit if their

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Respiratory Care • November 2000 Vol 45 No 11

Withdrawing Life-Sustaining Treatment in the Intensive Care Unit

parents approve.-' Laboratory and imaging studies should
be stopped.

Sedation and Analgesia

virtually all cases when life-support is withdrawn. The
individual clinician's experience or the failure of the opi-
ate/benzodiazepine combination may justify the use of bar-
biturates, haloperidol, or propofol.-''

Prior to performing uncomfortable procedures, clinicians
provide patients with adequate medication to prevent anx-
iety and suffering. Critically ill, hemodynamically un-
stable patients may not receive optimal sedation when
drug-related hypotension or respiratory suppression com-
promises the goals of maintaining life or liberation from
mechanical ventilation. However, when the goal of care is
changed to assuring patient comfort, any dose of medica-
tion that is required to meet this goal is justified, even if it
hastens death.

The sole purpose of administering sedatives to dying
patients is to relieve symptoms associated with this pro-
cess. Before patients are removed from life-support, they
should be completely comfortable as judged by the cessa-
tion of tachypnea, grimacing, agitated behavior, and auto-
nomic hyperactivity. This is accomplished by titrating med-
ication until objective signs of discomfort have been
eliminated. In many cases this will require medication
sufficient to induce unconsciousness. Doses should not be
increased in the absence of demonstrable signs of discom-
fort or for behavior that cannot plausibly be interpreted as
distress. For example, increased sedation may be indicated
for coughing or tachypnea, but not for eye movements.

Although variations in clinical practice are expected,
some regimens are unacceptable. Large boluses of medi-
cation similar to those used for the induction of general
anesthesia are excessive unless smaller doses have failed
to provide adequate sedation. There is an important ethical
difference between escalating sedative doses in order to
achieve rapid relief of symptoms and administering a large
initial bolus intended to induce apnea or hypotension. There
is no role for paralytic agents in the withdrawal of life-
sustaining treatments. Some clinicians may rationalize their
use on the grounds that preventing all patient movement
prevents distress for family members. Even if patient move-
ments were known to increase family distress, it would not
justify using a drug that prevented detection of discomfort
in the patient during death. Similarly, other drugs, for
example high dose potassium intended to induce cardiac
arrest, are not justifiable as they serve no other purpose
than to hasten death.

Given the variability in individual respon.ses and drug
tolerance, it is impossible to outline a single pharmaco-
logic regimen to apply in every case. Current guidelines on
the management of pain and anxiety in critical care rec-
ommend a combination of morphine or similar narcotic
with a benzodiazepine.-'' These medications, dosed appro-
priately, will provide adequate analgesia and sedation in

A Plan for Withdrawal

Before physicians perform procedures like intubation or
central venous catheterization, they have a clear plan of
action as well as contingency plans for complications. A
similar plan should be developed for withdrawing life-
support. Physicians need to consider which life-support
measures will be discontinued, in what order, and by whom.

Once a decision has been made, the goals of care should
be redefined in terms of patient comfort; the only criterion
to use to judge whether a treatment should be initiated,
withheld, or withdrawn is whether it contributes to that
goal. All treatments can be withdrawn, including vaso-
pressors, oxygen, mechanical ventilation, antibiotics, blood
transfusions, and nutritional support. We recognize that
clinicians (and occasionally some families) are uncomfort-
able discontinuing certain interventions they view as basic
care. For example, some clinicians may feel that intrave-
nous fluids, nutrition, and even antibiotics are basic enough
to be included as comfort care.-** There is little evidence
that these treatments contribute to the comfort of dying
patients.-'' Some families may choose to continue nutrition
and hydration because of the symbolic nature of these
treatments even after their lack of contribution to palliative
care has been explained. These requests should be re-
spected if families' wishes persist after being informed
that these treatments are not required and do not contribute
to comfort. When discussing these treatments, clinicians
should avoid the use of emotionally charged terms like
"starvation" and "dehydration," which probably do not
apply to terminally ill patients whose symptoms have been
appropriately palliated.

Frequently, clinicians are faced with multiple decisions
about a variety of current or potential life-sustaining treat-
ments. Despite the well established principle that "with-
holding and withdrawing are equivalent" some clinicians
find it difficult to stop treatments that are currently being
provided and choose to withhold future treatments while
continuing current levels of support.'" Unfortunately, this
leads clinicians to a strategy that withdraws life support in
a series of steps over several days.-** In this "stuttering
withdrawal" process, clinicians adopt a combination of
withholding increases in vasopressor medication or venti-
lator pressures while continuing other treatments like an-
tibiotics and transfusions. Clinicians and families may be
tempted to engage in this stepped withdrawal because a
gradual series of steps minimizes the sense of personal
responsibility for the patient's death. ^'

Respiratory Care • November 2000 Vol 45 No 11

1401

Withdrawing Life-Sustaining Treatment in the Intensive Care Unit

Although potentially psychologically beneficial, a grad-
ual approach to withdrawing life-sustaining treatments over
several days is not ethically or legally necessary and pro-
longs the dying process without benefit to the patient. '**-'-
Generally, clinical circumstances that justify withholding
one indicated life-sustaining treatment also justify the with-
drawal of current life-sustaining treatments."*''^ For exam-
ple, if there is a decision to withhold dialysis in an anuric
patient with cirrhosis and sepsis, strong consideration
should be given to withdrawing ventilatory support and
other life-sustaining treatments. Stepped withdrawal may
be useful as a technique to negotiate disagreements with
families over the decision to limit life-sustaining treat-
ments. Given the data that indicate how often decisions are
influenced by confusion about the equivalence of with-
holding and withdrawing, clinicians should take care to
examine their rationale for proposing stepped withdrawal.
When partial treatment strategies are entertained, it is par-
ticularly important for clinicians to explicitly communi-
cate the goals and limits of life-sustaining treatment.

The time course over which a life-sustaining treatment
should be withdrawn is determined by the potential for
discomfort as the life-sustaining treatment is stopped. The
only rationale for weaning or slowly tapering a life-sus-
taining treatment is to allow time to meet the patient's
needs for pain relief. Mechanical ventilation is one of the
few life-support devices whose abrupt termination is likely
to lead to profound discomfort due to dyspnea and there-
fore deserves specific attention to the time course of its
withdrawal. There is little justification for "weaning" other
interventions.

After adequate sedation has been achieved, vasopres-
sors, pacemakers, intra-aortic balloon pumps, and other
therapy not oriented toward meeting the comfort goals of
care should be turned off. Tapering these treatments serves
no role other than delaying death. Since the withdrawal of
mechanical ventilation poses the greatest problems with
ensuring comfort, all other life-support devices should be
withdrawn before the ventilator. Patients requiring high lev-
els of hemodynamic support may sustain a rapid cardiac death
just by 'withdrawing hemodynamic support before any atten-
tion can be devoted to withdrawing the ventilator. The act of
turning these devices off can be an emotional one, and the
attending physician should be prepared to perform this task or
to be present when it occurs. RTs who feel uncomfortable
withdrawing ventilatory support should express their misgiv-
ings to other team members.

Withdrawing Mechanical Ventilation

Unless the patient specifically requests otherwi.se, seda-
tion and analgesia sufficient to prevent grimacing or re-
sponse to painful stimuli should be provided before the

withdrawal of mechanical ventilatory support. After ade-
quate sedation is achieved we reduce the fraction of in-
spired oxygen to 0.2 1 , remove positive end-expiratory pres-
sure, and set the ventilator at an intermittent mandatory
ventilation rate equal to the patient's spontaneous respira-
tory rate or to a level of pressure support sufficient to fully
meet his or her ventilatory requirements. The.se ventilator
settings give the patient a fully supported ventilator breath
with every inspiratory attempt and allow clinicians time to
modify the sedation before completely removing ventila-
tor assistance. Air hunger, as manifested by tachypnea or
agitation, should be treated with a bolus of the chosen
sedative, followed by an increase in the continuous infu-
sion. After the patient is comfortable, ventilatory support
is weaned rapidly in either intermittent mandatory venti-
lation or pressure support mode until the patient is com-
fortable with an intermittent mandatory ventilation rate of
zero or a pressure support of zero cm HjO, at which point
the patient can be placed on a T-piece on humidified air.
Unless extraordinary levels of dyspnea are encountered, or
in the unusual case of an awake patient where clinicians
are trying to withdraw ventilatory support and maintain
some level of consciousness, there is no reason for the
transition from full ventilatory support to T-piece or ex-
tubation to take > 15-30 minutes.

Families may wish to be present for this process or not;
if they choose to attend, they should be prepared for the
possibility of some transient increases in agitation or re-
spiratory rate as sedation is being titrated. It is extremely
important to disable ventilator alarms during this period,
as the patient's terminal hypoventilation may trigger them.
Some ventilator alarms cannot be disabled, and this should
direct clinicians to use a T-piece or to extubate rather than
to leave the patient attached to the ventilator. From the
bedside an experienced physician and RT should attend
this early phase of withdrawal to reassure the patient and
family and to observe for complications like intractable
discomfort that would require immediate intervention.

Our practice is to leave the endotracheal tube in place
when mechanical ventilation is withdrawn. This prevents
gasping and airway occlusion that may be uncomfortable
for the patient and observers. It also facilitates suctioning
in patients who are uncomfortable because of profuse se-
cretions. Nevertheless, it may be appropriate to extubate
the patient, particularly when the patient may be able to
communicate or prolonged survival off of life-support is
expected. Some families or providers may feel strongly
that the endotracheal tube be removed. These wishes should
be respected; however, specific plans should be formu-
lated to anticipate secretion problems and agonal airway
obstruction when the endotracheal tube is removed. The
most important anticipatory step is education of the family
and staff that agonal breathing is normal and part of dying.
There are few data to determine best practice regarding

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terminal airway management; however, if other aspects of
the withdrawal of life-sustaining treatments are managed
well, including education of the family and adequate se-
dation, the decision to remove or leave the endotracheal
tube may not be of paramount importance.

Documentation

Progress notes in the medical record should document
the meetings leading up to the decision to withdraw sup-
port, the specific plans for withdrawal, and the pharmaco-
logic plan for sedation. This is particularly important be-
cause nurses or covering physicians who implement the
plan may not have been involved in the original decision
or discussions. Although meetings with surrogates need
not address specific decisions regarding every piece of
life-support technology, communication with other health
care providers must be detailed. This is particularly im-
portant when clinicians choose to withhold some life-sus-
taining treatments while continuing others. In these cases,
the rationale, proscribed treatments, and plan should be
clearly documented in the progress notes and orders.

Specific orders for withdrawing interventions and for
sedation should be written in the medical record. Orders
that simply say "no heroic measures" or "comfort care
only" can be confusing to a covering physician who must
make decisions about antibiotics or blood transfusions.
Institutions should develop guidelines, pathways, preprinted
orders, and nursing and respiratory care documentation stan-
dards for the withdrawal of life-support, as they currently do
for other common clinical situations (see Appendix).

Respiratory care departments may choose to develop
local standards regarding terminal weaning and extuba-
tion. Documentation in the respiratory care record should
indicate the steps taken and the time course of the terminal
withdraw of ventilatory support.

Evaluation

Quality improvement procedures are important for eval-
uating the withdrawal of life-support and the process of
dying, just as they are for other hospital procedures. Mem-
bers of the hospital critical care committee should review
the circumstances of these deaths to evaluate the care.
Those involved in the withdrawal of care, including family
members, should have the opportunity to evaluate the qual-
ity of dying and to suggest improvements for the future.
These suggestions should be incorporated into the pro-
cesses discussed in this document and made a part of the
local ICU guidelines.

Special Cases

Withdrawal of Mechanical Ventilation
When the Patient May Survive

Some patients and families, particularly in ca.ses of se-
vere pulmonary or neuromuscular disease, request that ven-
tilatory support be withdrawn when survival off the ven-
tilator is unlikely but possible. Such requests pose a dilemma
for clinicians because the goals of care are mixed. Provid-
ing sedation to minimize distress and simultaneously treat-
ing the patient to maximize respiratory function to provide
the best chance at survival without a ventilator is difficult.
In cases where survival is possible but unlikely, the latter
goal is favored. Sedation should be held to a minimum;
respiratory function should be optimized with bronchodi-
lator therapy, antibiotics, diuresis, and pulmonary toilet;
and the patient should be extubated to supplemental oxy-
gen. If it is consistent with the patient's goals, noninvasive
ventilatory support can be used as a bridge to unassisted
breathing.-'''

Prior to and just after extubation, the medical team and
patient must formulate specific plans regarding recurrent
respiratory failure. Clinicians have two options in this sit-
uation: to reinitiate ventilatory support or to begin aggres-
sive symptom management of dyspnea without ventilatory
support. Waiting until the patient develops respiratory fail-
ure to formulate a plan leads to chaotic decision-making in
the middle of the night with an acutely ill and dyspneic
patient. If the patient and family do not choose ventilatory
support, then sedation and other treatment as outlined else-
where in this document are begun, acknowledging that the
goal of unassisted breathing is no longer attainable. Cli-
nicians may be tempted to "make sure" the patient sfill
refuses intubation at the time of respiratory compromise;
however, complex conversations with an acutely dyspneic
and hypoxemic patient are unlikely to be satisfactory. In-
tubation need not be specifically offered if the patient has
already participated in a decision to withhold it. In these
situations clinicians should not confuse a request by a
patient to have his or her dyspnea relieved (which can be
done with narcotics) with a request to reinitiate life sup-
port with mechanical ventilation.

Despite clinicians' best efforts to clarify the choices and
to formulate a prospective plan for patients who develop
respiratory failure after extubation, some patients or their
families who initially refuse reintubation change their
minds. These situations can be harrowing for providers
because of the urgency of the decision to choose between
reintubation and palliative sedation, and also because of
the difficulty in ascertaining which request represents the
patient's true wishes. Because mechanical ventilation can
be ethically, legally, and humanely withdrawn later, an
informed request by the patient for intubation should be

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Withdrawing Life-Sustaining Treatment in the Intensive Care Unit

fulfilled even when it violates prior requests. Clinicians
should not feel frustrated by these extraordinary circum-
stances and should not view them as a failure of advance
care planning. Complex and subtle discussions regarding
end-of-life treatment choices should never occur at the
bedside of a dyspneic acutely ill patient in imminent dan-
ger of cardiopulmonary arrest.

Survival Despite Withdrawal
of Life-Sustaining Treatment

Patients who survive the withdrawal of life-sustaining
treatments present clinicians with several dilemmas. Fam-
ilies and clinicians can become frustrated and hope for
some means to expedite death. These requests should be
dealt with honestly and compassionately. Although the
evidence suggests that measures are taken to hasten death
in the ICU,'"' treatments intended solely to hasten death or
increases in sedation that are not necessary to relieve dis-
comfort are not justified under current ethical and legal
consensus.^'' Families should be reassured that their loved
one is comfortable and that the timing of death is out of the
control of the clinical team. It is appropriate to transfer these
patients out of the ICU to an area in the hospital with more
privacy, as long as the family has been prepared for the move.

Prolonged survival may cause those involved to ques-
tion their decision to withdraw life-sustaining treatments.
The available data suggest that prolonged survival after a
decision to withdraw life support is uncommon.^'' How-
ever, these cases are particularly difficult for clinicians
who must approach family members — recently resigned to
the death of a loved one — to discuss a change in plans.
Because so little is known about the timing of death after
withdrawal of life support, clinicians should be wary of
revising their plans and prognosis based on a perceived
delay in the expected timing of death. These changes in
plans can have a devastating effect on loved ones and staff.

less and apneic patient. With this narrow definition, DNR
orders do not apply to intubation for impending respiratory
failure, to admission to the ICU, or to the use of any other
life-sustaining treatments, including cardioversion for un-
stable cardiac rhythms.

Because the DNR order carries such symbolic signifi-
cance, we advocate using a different form or note to com-
municate decisions about other life-sustaining treatments
including intubation, transfer into the ICU, and the use of
blood products. The form that is used to communicate the
decision about CPR should not break CPR up into its
components. Since CPR and Advanced Cardiac Life Sup-
port are designed as an algorithmic intervention, and the
outcome data on this treatment are derived from its appli-
cation as a combined package, partial attempts at resusci-
tation should be avoided unless there is a specific ratio-
nale. A "menu" approach to CPR can lead to clinically
incongruous selections like "defibrillation and chest com-
pressions but no intubation" or "chemical code only
(medications but no defibrillation)." Following this line
of reasoning, patients who refuse a part of CPR implic-
itly refuse CPR. For example, a patient who refuses
intubation or defibrillation has implicitly refused CPR,
and a DNR order should be written. The converse is not
true. Some patients may refuse CPR yet desire intuba-
tion, pressors, ICU admission, and cardioversion. In these
cases, aggressive life-sustaining treatments may prevent
the need for CPR; however, should the patient sustain a
cardiopulmonary arrest despite these interventions, CPR
would be withheld.

Some physicians are reluctant to write a DNR order for
patients in the ICU because of concerns that a DNR patient
will receive less intense treatment.^'' This concern should be
amenable to staff education because it is certainly reasonable
and consistent for a patient to forego CPR yet request other
aggressive life-sustaining treatments whose outcomes may be
better than the 5% survival to hospital discharge rate quoted
for most hospitalized patients receiving CPR.

The Do-Not-Resuscitate Order

Summary and Future Directions

The decision to withhold cardiopulmonary resuscitation
(CPR) has been the focus of much of the literature about
limiting life-sustaining treatments. In the hospital, there is
a great deal of emphasis placed on whether a patient is a
"no-code" or "do-not-resuscitate" (DNR). Unfortunately,
these orders occasionally generate confusion. Should DNR
patients be admitted to the ICU? If a patient is DNR, what
other life-sustaining treatments should be offered? The
simplest remedy for this confusion is for the hospital to
apply a very strict definition to the DNR order. These
orders should apply only to the use of CPR by Advanced
Cardiac Life Support algorithm for an unconscious, pulse-

Although the withdrawal of life-support is increasingly
common and currently may account for the majority of
deaths in ICUs, practical aspects of this procedure have
received little attention in the medical literature or in clin-
ical training. Now that an ethical and legal consensus is
forming on the process surrounding the decision to limit
life-support, we must turn our collective research and ed-
ucational skills toward improving the delivery of this care.
Further research is necessary on optimal sedation regi-
mens, palliative nursing care in critically ill patients, de-
vices to assist communication and pain detection in intu-
bated patients, and outcomes to measure the quality of

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death. Teaching "Withdrawing life-support" should take a
place in the critical care curriculum next to sessions on
"Airway management" and "Central venous catheter-
ization." The clinician's responsibility to the patient
does not end with a decision to limit medical treatment,
but continues through the dying process. Every effort
should be made to ensure that withdrawing life-support
occurs with the same quality and attention to detail as is
routinely provided when life-support is initiated. Ap-
proaching the withdrawal of life-support as a medical
procedure provides clinicians with a recognizable frame-
work for their actions. A key step in this process is
identifying explicit shared goals for the process. Our
hope is that adopting a formal approach to this common
procedure will improve the care of patients dying in
hospitals.

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32. Meisel A. Legal myths about terminating life support. Arch Intern
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Appendix

ADMirnNG SERVICE/ATTENDING

Complete the following:

□ Do Not Attempt Resuscitation (DNAR) order written.

□ Note written in chart that documents rationale for comfort care, discussions with attending and discussions with
family (or attempts to contact family).

1) Discontinue all previous orders including routine vital signs, medication, enteral feeding, intravenous drips,
radiographs, laboratory tests. See below for new orders.

2) Remove devices not necessary for comfort including monitors, blood pressure cuffs, and leg compression sleeves.
See below for orders related to the ventilator.

3) Remove all devices (cardiac output computer, transfusers, defibrillator, intra-aortic balloon pump, ventricular
assist device, temporary pacemaker) from ICU room.

4) Liberalize visitation.

SEDATION AND ANALGESIA:

5) Select one :

a Morphine drip at current rate (assuming patient comfortable at that dose) or 10 mg/h or mg/h.

For signs of discomfort, up to q 15 min, give additional morphine equal to current hourly drip rate and increase
drip by 25%.

□ Fentanyl drip at current rate (assuming patient comfortable at that dose) or 100 pg/h or ug/h.

For signs of discomfort, up to q 15 min, give additional fentanyl equal to current hourly drip rate and increase
drip by 25%.

□ Other narcotic:

6) Select one :

□ Lorazepam drip at current rate (assuming patient comfortable at that dose) or 5 mg/h or ____^ mg/h.

For signs of discomfort, up to q 15 min, give additional lorazepam equal to current hourly drip rate and increase
drip by 25%.

□ Midazolam drip at current rate (assuming patient comfortable at that dose) or 10 mg/h or mg/h.

For signs of discomfort, up to q 15 min, give additional midazolam equal to current hourly drip rate and increase
drip by 25%.

□ Other benzodiazepine, barbiturate, or propofol:

VENTILATOR:

7) Initial ventilator setting: IMV rate _, PS level , (Choose IMV or PS, not a combination),

F,o, . , PEEP .

8) Reduce apnea, heater, and other ventilator alarms to minimum setting.

9) Reduce Fio^ to room air and PEEP to zero over about 5 min and titrate sedation as indicated for discomfort.

10) As indicated by level of discomfort, wean IMV to 4 or PS to 5 over 5 to 20 min and titrate sedation as indicated
for discomfort.

1 1) When patient is comfortable on IMV rate 4 or PS of 5. select one :

□ Extubate patient to air.

□ T-piece with air (not CPAP on ventilator).

PHYSICIAN SIGNATURE

M.D.

RNs SIGNATURE

R.N.

COMFORT CARE ORDERS FOR THE WITHDRAWAL OF LIFE
SUPPORT IN ADULTS IN THE ICU

Page 1 of 2

(Continued)

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Appendix
(Page 2)

PRINCIPLES FOR WITHHOLDING AND WITHDRAWING LIFE SUSTAINING TREATMENT

1 . Death occurs as a complication of the underlying disease. The goal of the comfort care outlined on the reverse is to relieve
suffering in a dying patient not to hasten death.

2. Withdrawal of life sustaining treatment is a medical procedure that requires the same degree of physician participation and
quality as other procedures.

3. Actions solely intended to hasten death (for example, high doses of potassium or paralytic drugs) are morally unacceptable,
however, any dose of pain relieving medication can be used when required to provide comfort even if these doses may hasten
death.

4. Withholding treatments is morally and legally equivalent to withdrawing them.

5. When one life sustaining treatment is withheld, strong consideration should be given to withdrawing other current life
sustaining treatments and changing the goals of care to comfort.

6. Any treatment can be withdrawn including nutrition, fluids, antibiotics, and blood.

7. Assessing pain and discomfort in intubated, critically ill, patients can be difficult. The following should be assessed and
documented in the medical record when increasing sedation: tachypnea, tachycardia, diaphoresis, grimacing, accessory
muscle use, nasal flaring, and restlessness.

8. Concerns about hastening death by over-sedating patients are understandable. However, clinicians should be extremely
sensitive to the difficulties of assessing discomfort in critically ill patients and should know that many patients develop
tolerance to sedative medication. Therefore, clinicians should be wary of under-treating discomfort during the withdrawal of
life sustaining treatments in the ICU.

9. Brain dead patients do not need sedation during the withdrawal of life sustaining treatment. Patients should not have life
support withdrawn while receiving paralytic drugs as these will mask signs of discomfort.

10. Life support can be withdrawn from patients after paralytic drugs have been stopped as long as clinicians feel that the patient
has sufficient motor activity to demonstrate discomfort.

PHYSICIAN SIONATtIRE

M.D.

RNs SIGNATURE

COMFORT CARE ORDERS FOR THE WITHDRAWAL
OF LIFE SUPPORT IN ADULTS IN THE ICU

Page 2 of 2

Withdrawal of life-support

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Withdrawing Life-Sustaining Treatment in the Intensive Care Unit

Discussion

Manning: In your algorithm for
withdrawing Hfe support, one of the
key steps was to ensure comfort. I find
that's often a contentious issue, par-
ticularly when withdrawing ventila-
tory support. Usually one of the rea-
sons we have ventilatory support is to
relieve the load on the respiratory mus-
cles. In most patients who are under-
going mechanical ventilation, if we re-
move ventilatory support, they will
have heightened drive and they usually
have an increase in respiratory rate, of-
ten with the recruitment of their acces-
sory muscles. I find that beliefs about
this run the gamut from administering
sedation to patients who I don't think
would respond if a bomb went off in
their room, to patients who are in obvi-
ous respiratory distress. I wonder how
you decide what constitutes comfort.

Rubenfeld: That's a great question,
and you're going to be disappointed
with my answer. I think the important
thing in these situations is the team
issue. What's important is that the peo-
ple who are on the team agree on the
criteria, not so much that "I know the
right criteria," but that as a group you
come to agree that there are certain
criteria. I know exactly what you mean,
because I've gone into a room to with-
draw life-sustaining treatment, and the
nurse is administering more narcotic,
and I ask "Why?" and the response is
"Well, can't you see? He looks un-
comfortable." I'm certainly willing to
admit that nurses have a better sense
of that than I do, particularly after
spending so much time with the pa-
tient. But I'm looking at a patient
who's essentially breathing 8 times a
minute and is just sort of lying there.
What I would suggest, and I think the
answer to this (we'll mention it to-
morrow when we do Barbara Daly's
presentation) is to come up with some
.sort of charting mechanism that in-
cludes the criteria that in your ICU are
accepted as indicative of a need for
more sedation. So it may be a respi-

ratory rate of 40 that you find indic-
ative of discomfort, but as a group
you agree. I don't think there are spe-
cific acceptable criteria.

Hansen-Flaschen: Our approach to
withdrawing life support is very sim-
ilar to what you just described. One
thing that we've added in the last
year — maybe you do this as well — is
that very often when we terminally
withdraw life support, mechanical
ventilation, our patients are in reverse
isolation for resistant infections. We
and the family are wearing gowns and
gloves. We invite the family to be
present, and I go in without my gloves
and gown and invite the family to take
their stuff off. It's part of our way of
saying (nonverbally) that as best as
we can, "We're going to turn this hos-
pital ICU room into his bedroom at
home. What matters is you being there
at the bedside, and we want you to do
that without these yellow gowns."

It's a small adjustment, but I have
found it can have a major impact on
the events. One thing that happens is
it's a very powerful way of saying "He's
dying." You wouldn't think of that, but
they've been wearing this stuff in reli-
giously for two to three weeks and the
doctors have been doing it, and to walk
in now without wearing any of this stuff
gets the message across that he's dying
now, almost more powerfully than the
words themselves.

Rubenfeld: I always hate it when
people bring up stuff that I haven't
thought about, but that will certainly
be in the next version of the talk, John,
and without any attribution either. The
point I like about that — and I think
it's akin to the monitoring issue (I draw
the analogy to the monitoring is-
sue) — is that I think it sends a mes-
sage to the entire team that we're do-
ing something different now. We were
doing something else before, and now
we're doing something different.

Heffner: A lot of discussion has fo-
cused on how to monitor the appro-

priate amount of sedatives and pain
medication. It seems that we keep fall-
ing back into putting the physician and
the caregiver at the center of that de-
cision-making, when it should be the
patient. So what are your thoughts
about using the family members as
the gauge for how much medication
to give when patients can no longer
contribute to decision-making?

Rubenfeld: I agree. In the manu-
script I talk about that a lot. It's a
superb point, and I think it's part of
the education. It's part of building the
team that includes the family. A lot of
times in these situations, particularly
in the chronically critically ill, the pa-
tient's family have really become a
central part of the care of the patient
and have participated in a lot of differ-
ent ways. Letting them have that role —
your comment earlier about having them
participate in using the PCA and things
like that — I think those are superb. I
agree entirely. It's a great point.

Fins: Just two comments about peo-
ple who are brain-injured. There's an
emerging field of studies from neuro-
imaging suggesting that patients, even
in a persistent vegetative state, and cer-
tainly in the minimally conscious state
(and coma is a sort of indeterminate
state) have some remnants of cortical
activity. So it seems almost obligatory
to err on the side of treating the pos-
sibility of pain.

The second issue is that I heard a
talk several years ago in Chicago when
Saul Bellow was talking about his ex-
perience of being in a coma after sus-
taining tropical fish poisoning. As he
recounted it, people were in the room
talking about him and to him. This is
instructive because it is infrequent that
Nobel Laureates in literature come back
from the dead, as it were, to tell their
story. What was striking was how rich a
cognitive experience it was for him to
be in a coma, and yet he was relating it.
So I think when in doubt, the ethical
mandate should be above all do no harm.
This must take precedence.

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Withdrawing Life-Sustaining Treatment in the Intensive Care Unit

Burt: I just want to offer another
data point that underscores what John
[Hansen-Flaschen] just described
about taking the anti-infection devices
off. I use, for teaching purposes, a vid-
eotape that was made three or four
years ago about the administration of
euthanasia in the Netherlands. It was
shown on American television, Prime
Time Live, actually. I've seen it many
times, and maybe the fourth or fifth
time I saw it, I noticed that the phy-
sician who was administering active
euthanasia — that is to say giving a fa-
tal injection to the patient — the last
thing he did before putting in the nee-
dle was to take a cotton swab and ad-
minister a disinfectant. The thing that
strikes me about that is its euphemis-
tic character: at this last minute the
physician was disguising somehow
that he was inflicting harm or killing
the patient.

I mention this because it seems to
me to underscore the difficulty of do-
ing away with all these euphemisms,
and the way they are used to modulate
the provider's sense of "I'm doing
something terrible." You can't just
treat these concerns as complete cra-
ziness. To stop the monitoring, dis-
connecting the alarms, seems to me to
carry some costs on the part of the
staff that must at least somehow be
addressed with them.

Rubenfeld: It's clear to me that it's
not crazy. It comes from a place that I
admire the most about ICU nurses I
work with, which is that talking with
an ICU nurse in the bay of an ICU is
a little like talking to an anxious
mother, because they have one eye on
you and one eye on the monitor, no
matter how enthralling the conversa-
tion is. That's kind of what you want.
It's just the issue of I don't know if
their euphemisms are forces of habit,
but we are much more comfortable
receiving what we know. And what
we know in the ICU are oxygen sat-
urations and cardiac outputs and blood
pressures, which isn't to say we don't
know the other aspects, but it certainly

is a more comfortable sense of habit
to worry about monitoring those things
than to face the enormity of death.

Benditt: I've experienced many
times the fact that the ICU is really
the exact wrong place to die. I'm won-
dering why people haven't thought of
either having rooms that can be con-
verted quickly to a more home-like
situation, or just moving people out of
the ICU for the terminal weaning or
the extubation. The family/patient ex-
perience could be vastly improved by
removing it from the sterile, gowned,
monitored, fluorescent-lighted envi-
ronment.

Rubenfeld: The comment I want to
make is that we'll address some of
these structural and organizational is-
sues when we do Barbara Daly's pa-
per. It's a superb point, but I think I'm
going to table a longer discussion of
it. It just fits in better at another place.
Joe, do you want to comment on that
special place to die?

Fins: Yes. Frank Miller and I wrote
a Sounding Board several years ago
where we proposed that kind of idea
and we called them "alternative care
units," an ACU, as an alternative to
the ICU, where terminal weaning and
removal of ventilation would occur.'
The analogy we made was to the birth-
ing room and how that transformed
the culture of childbirth. It demedical-
ized it and brought it back to its nat-
ural state. I'll leave the discussion of
its merits for tomorrow.

REFERENCE

I . Miller FG, Fins JJ. A proposal to restructure
hospital care for dying patients. N Engl J Med
1996;334:1740-1742.

Rubenfeld: It's really important. It
touches on the whole issue of struc-
ture and environment and how that
impacts practice.

Benditt: In the spirit of the multi-
disciplinary approach that we've dis-

cussed today, there are two groups that
deserve mention: the chaplaincy and
psychiatry-liaison nurses. We found
both those groups extremely helpful.
Families seem so grateful that you ask
"Are your needs being met? Can we
help you meet those needs at this
time?"

Rubenfeld: That's a great point. It
is part of the longer version of this. I
agree with you entirely that it's very
important to involve pastoral or social
work or psych-liaison-type people in
this process. The hardest thing for me
is to figure out how to triage which of
those support kinds of personnel to
the person. It's a difficult assessment
for me. But I think their involvement
is crucial.

Curtis: This morning I told a story
about a therapist who was very upset
as we went through the life withdrawal
process. The day before I got on the
plane to CancUn, I was in the ICU,
and we withdrew life support. It was a
somber setting and there was no fam-
ily there, but the staff was there and
we called the therapist, and the ther-
apist came jostling in and joking and
teasing various people in the room,
pulled the tube, and left. I was struck
by this stark difference there, and I
wonder if you could talk about your
experiences with respiratory thera-
pists' experiences on this issue.

Rubenfeld: Randy is setting me up
because he knows at least a little bit of
my interest in this came from a very
bad experience. Very soon after I
started attending in the ICU at Har-
borview (and a lot of us have had the
experience of taking care of a patient
in the ICU for a month with those
hills and valleys and moments of op-
timism and pessimism) and had got-
ten very close to the family, a very
elderly woman, through a lot of ter-
rific medical care, had gotten very
close to leaving the hospital once and
leaving the ICU once or twice. But we
were at the point of withdrawing life-

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Withdrawing Life-Sustaining Treatment in the Intensive Care Unit

sustaining treatment, and I'd prepared
the family and had this long discus-
sion about how it was going to be
very quiet and it would be very smooth,
no alarms, a very peaceful experience,
and did all the things I' ve tried to men-
tion in this talk.

I must say the fault was largely mine,
because I didn't do one of the things
that was most important, which was
involve the therapist in the plan. I had
asked the therapist to come and place
the patient on a T-piece because I know
that on our ventilators, if you let a
patient die on CPAP, you get the low
minute ventilation alarm and it's one
of those alarms you just can't turn off.
This was after I'd unplugged the mon-
itor and probably gotten written up
for doing that. And when the respira-
tory therapist came to the bedside and
I said, with the family there weeping
and our arms all around each other, I
said "Could you please put the patient
on the T-piece?" She said "Doctor,
we can't put the patient on the T-piece.
Do you know how much it costs to
put a brand new setup here? She's only
going to be here a couple of minutes."
And she said this in quite a loud voice.

So the minute ventilation alarm started
to go off — loudly.

If you don't understand why it's im-
portant to not have alarms going off
when people are crying and saying
goodbye to a loved one, then it doesn't
become important to have a brand new
T-piece set up.

Tudy Giordano: If you're not part
of the team and don't understand the
process, you can't expect the RT to un-
derstand what's happening. I can recall
being called to disconnect a ventilator; I
was called because the nurse didn't want
to do it. Send in the therapist to do it.
My team involvement was to go dis-
connect the ventilator and push it out of
the room. It is an inglorious role. You're
in there to clean up the "garbage," to
take the technology away. It is not pleas-
ant, and you're by yourself

Sorenson: I think it's wonderful to
make a plan, but the note I made is
that the plan needs to be communi-
cated. We are absolutely willing to
work as a team, but we have to know
what the plan is. The other comment I

would make about therapists is that
we all have our own coping skills and
some of us do it better than others.
But I guarantee that the therapists
who are going in with the lackadai-
sical attitude are finding a quiet place
afterwards because it's not an easy
thing.

Rubenfeld: The purpose of my an-
ecdote and Randy's anecdote was to
show what happens when you don't
establish team goals, not to point out
the difficulty of setting a low minute
ventilation alarm. It really is the fail-
ure on my part to have everyone un-
derstand what the purpose was.

Heffner: I wonder if another part of
the plan should be a discussion of
events among the team after a patient' s
death to allow opportunities for per-
sonal growth and process improve-
ment. Could we do things better? Part
of the discussion could be focused on
quality improvement, but a part could
be directed toward healing the care
team and learning how perceptions and
sensibilities were managed.

1410

Respiratory Care • November 2000 Vol 45 No 1 1

Reviews of Books and Other Media. Note to publishers: Send review copies of boolcs, films,
tapes, and software to Respiratory Care, 600 Ninth Avenue, Suite 702, Seattle WA 98104.

Books, Films,
Tapes, & Software

Handbook of Palliative Care. Christina
Faull MB BS, BMed Sci, MD; Yvonne
Carter MB BS MD, Richard Woof MB BS,
Editors. Oxford, United Kingdom: Blacic-
weil Science. 1998. Soft-cover, illustrated,
3% pages, $36.95.

Palliative care is an interdisciplinary,
comprehensive, and concentrated approach
to dying and death. Though the field is less
than 40 years old, its conception reaches to
the very beginnings of medical history. In
the last 3 decades, the expanding knowl-
edge and experience in palliative care has
led to a burgeoning of information, despite
a relative lag of comprehensive resources to
aid in the practice of palliative care. This
book, responding to organizational changes
in British health care, has emerged from the
swell of new techniques and developing
pharmacology, to provide summary and in-
troduction to the field of palliative care.

The authors, exclusively from the United
Kingdom, aimed to outline the principles of
palliative care and produce a book to serve
as a reference for its practice. They intend
to impart a holistic approach applicable to
all dying patients, focusing on quality of
life. The readership is primarily the GP (Gen-
eral Practitioner physician of the United
Kingdom's National Health System) and the
primary health care team (the GP's imme-
diate ancillary and support staff for a par-
ticular catchment), though the authors as-
sert that the work will prove useful to a
wide range of professionals. Inasmuch as
the text fosters interdisciplinary understand-
ing, communication, and respect, they are
correct. Respiratory specialists will find the
chapters dedicated to their area of expertise
perfunctory, but will benefit from the text
as a whole as it incorporates their skills into
the area of palliation and expands their
knowledge of relevant and related topics.

As the definition of palliative care im-
parts, its practice focuses on the mitigation
of pain and suffering by crossing disciplines
to achieve interprofessional care. The con-
tent of this book spans the field to achieve
an understanding of this approach. The first
8 chapters U^ace the roots and key principles
of palliative interdisciplinary care, begin-
ning with historical perspective and defini-
tions, touching on medication delivery and
management, and describing needs assess-

ment and, at relative length, the methods of
the British audit system. Subsequent chap-
ters outline ethical issues with a biased pre-
sentation from the British perspective, for-
mulate theories of adaptation and
bereavement, and impart concepts of com-
munication specific to the task of palliation.
The bulk of the book, some 250-odd pages,
is then dedicated to management of symp-
toms and disease-specific topics. Each chap-
ter maintains the concise but comprehen-
sive approach designated by the editors.
Absent or underemphasized subjects include
legal concerns, starvation and dehydration,
surgery and cancer chemotherapy in palli-
ation, sleep disturbances, support of venti-
lation, culture-specific issues, use of reha-
bilitative therapies, psychiatric issues and
suicide, aspects within spirituality, and re-
search and training development.

The principles of pain management make
up the first of the substantive topic chapters,
providing an appropriate pathophysiologic
review to aid in accurate diagnosis and man-
agement. The review of pharmacologic
agents is quite specific to the United King-
dom, but the adjuvant techniques are more
widely applicable. The subsequent chapter
on gastrointestinal symptoms focuses on the
differential diagnosis and management of
nausea and vomiting and hollow visceral
obstruction. The respiratory chapter covers
the assessment of cough, dyspnea, and he-
moptysis. Care of the tracheostomy is de-
ferred to other chapters. A cancer section
delineates anatomic symptoms, metabolic
disturbances, and complications of oncolog-
ical treatments.

A chapter on acquired immunodeficiency
syndrome (AIDS) includes discussion about
attitudes toward this illness as well as the
safety of caregivers. AlDS-specific physi-
cal and infectious challenges are reviewed.
A chapter on neuromuscular disorders pro-
vides a cursory overview of ventilatory fail-
ure and highlights the myriad difficulties
encountered in neurological deterioration. A
chapter on head and neck cancer predomi-
nantly reviews nutritional support and care
of the tracheostomy. A pediatrics section
summarizes aspects specific to this popula-
tion as well as the pronounced intensity of
and ways to deal with the bereavement. The
following chapter combines the symptoms

of asthenia, cachexia, and anorexia, focus-
ing on their interrelatedness and manage-
ment.

The next chapter focuses on the tradi-
tionally nursing-related topic of skin and
wound care. Another chapter delves into
lymphedema. A valuable section then con-
centrates on terminal care and the specifics
of active dying. Physical symptoms, gen-
eral care needs, and symptom amelioration
are described. The variety of potential ter-
minal events as well as psychological needs
of imminent and active dying are addressed.
An overview of religious rituals surround-
ing death and burial is also presented.

The authors round out the book with an
introduction to complementary medicine
and the interventions and potential problems
one may encounter in the application of com-
plementary approaches to palliative care.
Data for effectiveness and safety of com-
plementary techniques are presented where
available. Topics addressed include acu-
puncture, dietary regimens, homeopathy,
herbalism, and mind-body techniques. A fi-
nal chapter entitled "The Syringe Driver"
reviews in depth the portable infusion pump
or mechanical aid for subcutaneous infu-
sion and provides a useful table of appro-
priate agents and dose ranges.

The style of this book is, by necessity,
terse, but the concise rations lend themselves
to easy perusal and subsequent review. The
index is comprehensive and facile. For prac-
tifioners in the United Kingdom a collection
of useful telephone numbers and addresses
for palliative care services and patient and
caregiver support groups is offered as an
appendix. The illustrations are sparse but
well utilized, mostly elucidating flow-dia-
grams in pathophysiology or response to
interventions; the tables are often awkward
and less illuminating. The book is compact
and aesthetic, its cover beautified by a de-
lightful reproduction of a watercolor and
poem entitled "Between Night and Day" by
artist Michele Angelo Patrone, who depicts
his experience during treatment for
Hodgkin's Disease.

This timely book has achieved its goal of
outlining the principles of palliative care.
Although offering thoughtful collections on
a wide array of palliative care topics, the
information is by design sparse. The factual

Respiratory Care • November 2000 Vol 45 No 1 1

1411

Books, Films, Tapes, & Software

data are accurate, although the experience
and biases of the editors are apparent and
pervasive throughout. The authors have pre-
pared a text that offers an original summary
and an important contribution. The practi-
tioner is guided to further reading at the end
of each topic with generous, recent, and per-
tinent references.

Most useful to the practitioner navigat-
ing in the United Kingdom, the book pro-
vides a practical and comprehensive intro-
duction to the field of palliative care. The
specialist in palliative care who requires a
practical bookshelf reference is, however,
still bound to more substantive works like
the Oxford Textbook of Palliative Medicine.
The respiratory practitioner is similarly
guided to Sam Ahmedzai's chapter within
the Oxford Textbook of Palliative Medicine
and the array of published articles and re-
views previously released on specific topics
in palhative care.

Richard Mularski MD

Pulmonary and Critical Care Medicine

Department of Medicine

Oregon Health Sciences University

Portland, Oregon

Evaluating Palliative Care: Establishing
the Evidence Base. Margaret Robbins. Ox-
ford, United Kingdom: Oxford University
Press. 1999. Soft-cover, 175 pages, $32.50.
Evaluating Palliative Care is a com-
pact overview, written from a British point
of view aimed at clinicians or researchers
planning to conduct evaluations. The au-
thor, Margaret Robbins, aims to provide an
introduction to the theory and practice of
evaluating palliative care services. The chap-
ters include a useful overview of evaluation
research, followed by chapters on evaluat-
ing patients, family caregivers, professional
clinicians, service outcomes, and implemen-
tation of an evaluation. Each chapter begins
with salient questions and uses examples
from the literature to illustrate what has been
empirically demonstrated. For instance, in
the chapter on patients, Robbins covers the
ethical and practical problems of doing re-
search on people who are particularly vul-
nerable and who may not be able to com-
plete long questionnaires or interviews. She
discusses quantitative and qualitative patient
instruments, and concludes with a helpful
discussion about the use of these techniques
for measuring the experience of dying

patients. The book is not a primer on pal-
liative care.

Perhaps because of its careful focus.
Evaluating Palliative Care is a model of
concision and clarity . Robbins writes clearly,
uses the literature succinctly, and avoids the
muddle of jargon that plagues much evalu-
ation literature. Because it is short — less than
150 pages — it can be read as a brief over-
view and retained as a reference (especially
since there are many well-selected citations).
Robbins specifically does not set out to pro-
duce a systematic overview in the Cochrane
Collaborative sense, but rather a more per-
sonal tour of the subject. The result is a
book that reads as if it were written by a
knowledgeable but opinionated academic.

If the strength of Evaluating Palliative
Care is that it provides a beautifully coher-
ent overview, the weakness for American
readers is that it is written for a British au-
dience. Robbins assumes that palliative care
services are widely available — not the case
in the United States — and the palliative care
services that she does describe cannot eas-
ily be generalized to the United States' sit-
uation, in which the Medicare hospice ben-
efit looms over much of the palliative care
that is delivered. The references, while use-
ful, are mostly British; for instance, the
SUPPORT study, a United States landmark
in describing inadequacies in care of dying
patients in intensive care units, is not men-
tioned. Although many American readers
may be in the process of establishing pal-
liative care services, the book does not cover
process evaluations useful for setting up a
service. Robbins mentions cost, but offers
nothing practical for United States readers
trying to cost out their .services or figure out
how to charge for them. The new United
States lCD-9 code for palliative care is not
mentioned.

One other deficiency for American read-
ers is that Robbins does not place evalua-
tion within the context of quality improve-
ment, which in the United States is the
context in which much .service evaluation
takes place. The last few years have seen an
American boom, led by Donald Berwick, in
the use of a team-oriented participant-driven
evaluative technique derived from a para-
digm of action research. The Berwick tech-
nique relies on many brief evaluations that
are rapidly incorporated into practice, and
eschews large formal studies. This approach
is not discussed in Evaluating Palliative
Care. However, this book could well be

useful in helping define end points for those
using the Berwick model.

Despite these limitations. Evaluating
Palliative Care fills a useful niche as a dis-
cipline-specific primer in health services. It
is the best brief overview of the subject I
have ever read. For American readers who
want to get down and dirty with evaluation,
however, a complementary source is neces-
sary — my recommendation here is Joanne
Lynn's Improving Care for the End of Life:
A Sourcebook.

Anthony Back MD

Department of Medicine

Division of Medical Oncology

Department of Veterans Affairs

Puget Sound Health Care System

University of Washington

Seattle, Washington

Council of Ethical and Judicial Affairs
Reports on End-of-Life Care. American
Medical Association. Chicago: American
Medical Association. 1998. Soft-cover, 58
pages, $32.95.

This is a "must read" for all physicians
and other health care professionals who are
involved with caring for patients at the end
of life. It contains the views of the Ameri-
can Medical Association and endorses the
association's position on appropriate ethical
behavior and practice standards regarding
end-of-life care. This is particularly impor-
tant and pertinent in today's health care en-
vironment. While medical ethics has been
an integral part of health care since Hip-
pocrates, advances in medical technology
have enabled us to resuscitate people, re-
gardless of the underlying condition, and to
keep them alive with artificial life-support.
Consequently, ethical concerns regarding
end-of-life care have surfaced and become
a source of concern.

The Council on Ethical and Judicial Af-
fairs, which consists of 9 .selected members
of the American Medical As,sociation, is-
sues ref)orts twice yearly. This book is a
compilation of Council Reports from 1987
to 1996 on ethical is.sues related to end-of-
life care. The reports are virtually unchanged
from their originally published fonn. with
the exception of those reports that have been
slightly revised and published in the medi-
cal literature since they were issued. For
those, the published report rather than the
original report is supplied. The content of
the later reports may supersede the earlier

1412

Respiratory Care • November 2000 Vol 45 No 1 1

Books, Films, Tapes, & Software

reports. In cases where some terms and sta-
tistics may be dated and there is a discrep-
ancy between old and new reports, foot-
notes refer the reader to the most current
position of the Council. This compendium
is intended for use as a resource and edu-
cational tool for those wishing to under-
stand the ethical challenges posed in end-
of-life care.

There are 9 reports. The title and year of
each report are listed in the table of contents
and are:

1. Do-Not-Resuscitate Orders. Decem-
ber 1987 (revised August 1988).

2. Euthanasia. June 1988.

3. Persistent Vegetative State and the De-
cision to Withdraw or Withhold Life Sup-
port. June 1989.

4. Guidelines for the Appropriate Use of
Do-Not-Resuscitate Orders. December 1 990
(revised June 1994).

5. Decisions Near the End of Life. June
1991 (updated June 1996).

6. Decisions to Forgo Life-Sustaining
Treatment for Incompetent Patients. June
1991 (updated 1996).

7. Physician- Assisted Suicide. June 1994.

8. Medical Futility in End-of-Life Care.
December 1996.

9. Optimal Use of Orders-Not-to-Inter-
vene and Advance Directives. June 1996.

The book is the size of a standard jour-
nal. It is soft-covered and the pages consist
of good quality, heavy paper. Each report is
clear, concise, easily readable, and well writ-
ten, with a wealth of information that is
very useful for answering commonly en-
countered ethical questions that arise in end-
of-life situations. The reports are well ref-
erenced. One minor typographical error was
noted where the word "at" was used instead
of "to" in the report on "Guidelines for the
Appropriate Use of Do-Not-Resuscitate Or-
ders." Also there is a discrepancy in the
report on "Optimal Use of Orders-Not-to-
Intervene and Advance Directives," where
the table of contents indicates that the date
was June 1996 and the report itself indi-
cates that it was June 1997.

Although the reports are somewhat dated
in terms of when they were written, each
report is well thought out and describes eth-
ical principles that are very applicable to the
current medical climate. Some legal changes
have since occurred, however. For instance,
in the report "Decisions to Forgo Life-Sus-
taining Treatment for Incompetent Patients,"
where advance directives are addressed, the
information was accurate for the time it was

originally written in 1991, but changes took
place between then and the time it was up-
dated in 1996, yet the updated report did not
indicate this. The report states: "Forty-one
states currently have living will statutes. . ."
It then goes on to state that when the Patient
Self-Determination Act, which was passed
in 1 990, takes effect in 1 99 1 , that "any health
care facility that receives funds from Med-
icaid or Medicare will be required to pro-
vide written information to all patients about
advance directives." Well, this did happen
before the updated report was written, and
since then all 50 states and the District of
Columbia have established laws that address
advance directives.

Not being a legal expert, I find it difficult
to tell what other legal changes may have
occurred that were not updated. While it
could be argued that this is a historical doc-
ument, it clearly states in the preface that it
is intended for use as a resource and edu-
cational tool. Since the document was pub-
lished in 1998, one might expect that the
information reflects accuracy that is fairly
close to that time, which could possibly be
misleading.

On the other hand, some of the principles
seem to be ahead of their time, because in
many instances the guidelines set forth are
still not practiced or are just catching on.
For example, the 1987 and 1990 reports re-
garding do-not-resuscitate orders clearly
state that physicians should not perform car-
diopulmonary resuscitation if they judge that
it would be futile to do so, even if the pa-
tient or surrogate decision maker requests
it. Despite this, and the fact that many hos-
pital policies indicate this as well, many phy-
sicians still believe that they must obtain
consent from the patient or proxy in order
to write a do-not-resuscitate order, even if
an attempt would be futile. The report on
"Decisions Near the End of Life" states;
"The physician's obligation to respect a pa-
tient's decision does not require a physician
to provide a treatment that is not medically
sound."

Other basic ethical points that the Coun-
cil acknowledges are that there is no ethical
distinction between withdrawing and with-
holding life-sustaining treatments, and that
it is ethically and legally permissible to use
enough pain medicine to relieve pain and
suffering, even if doing so may shorten life.
The Council is also very clear in its position
that it is opposed to euthanasia and physi-
cian-assisted suicide and has stated that these
should not be confused with palliative care.

Throughout the reports, useful definitions
are given for many terms and concepts, such
as permanent unconsciousness, permanent
vegetative state and cognitive death, life-
sustaining treatment, euthanasia, physician-
assisted suicide, substituted judgment, and
best interest standards. The Council has cho-
sen not to define futility because it states
that the "meaning inherently involves a value
judgment" and it recommends defining fu-
tility on a case-by-case basis.

Many of the reports end with summaries,
conclusions, or recommendations. These
provide additional clarity and reaffirm the
Council's position on the issues.

This book is a wonderful resource for
information on the ethical and legal aspects
of end-of-life care and for clearing up mis-
conceptions that are commonly encountered
in end-of-life situations. Physicians and
other health care providers who may fear
legal or professional repercussions or feel
unsure about what ought or ought not to be
done in certain end-of-life situations can gain
confidence and assurances that they are do-
ing the right thing when their decisions are
based on and supported by American Med-
ical Association standards and guidelines.

Betty A Ditillo MSN RN NP-C CS
CCRN

Section of Hematology/Oncology

Department of Veterans Affairs

New Jersey Health Care System

East Orange, New Jersey

Critical Care Division

St Barnabas Medical Center

Livingston, New Jersey

Death and Dying Sourcebook. Annemarie
S Muth. Editor. (Health Reference Series.)
Detroit: Omnigraphics. 20(X). Hardcover,
630 pages, $78.

This book is an addition to the Omni-
graphics Health Reference series. The
opening sentence of the preface sets the
tone. Two million people will die in the
United States every year. They and their
families will find much of value in this
6(X)-page book.

Part I deals with death and dying statis-
tics in the United States, followed by sec-
tions on attitudes toward death from vary-
ing cultural and personal perspectives, health
care options for the terminally ill, end-of-
life care (including decision-making and the
roles of the intensive care unit and palliative
care teams), the dying process, final arrange-
ments (including issues related to funerals.

Respiratory Care • November 2000 Vol 45 No 1 1

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Books, Films, Tapes, & Software

wills, and organ donation), and a final sec-
tion on bereavement.

As the editor points out, the Sourcebook
is "not intended to be used as a diagnostic
tool. . . or as a substitute for the physician/
patient relationship." What then is it and
does it achieve its aims?

The sourcebook is, at times, a compila-
tion of sterile statistics about deaths in the
United States, interspersed with institutional
and individual perspectives on end-of-life
care. These are sometimes anecdotal, often
research driven. However, the sourcebook
should not be judged too harshly on these
grounds. Readers will often be able to relate
more to the personal experiences of some of
the individuals who have chosen to share
their experiences (good and bad) with the
rest of us. There are multiple contributions
(too numerous to mention here), and some
of the chapters are adaptations of previ-
ously published work. Several national
agencies and noted researchers have as-
sisted in the development of this book.
Inevitably, the writing styles vary and the
reader might be thrown by the occasional
use of jargon (particularly when dealing with
analytical issues). However, as the book de-
velops, the longer and more thoughtful con-
tributions of later sections make up for ear-
lier deficiencies.

Part 1 continues with chapters on life ex-
pectancy, leading causes of death, and in-
fant, fetal, and perinatal mortality. Other
short and "sterile" chapters follow, dealing
with health or lack of it according to eth-
nicity, but there is much more substance to
the chapter, "Strokes and the South," which
provides details of the alarming excess at-
tributable mortality and the lack of research
into the causes. This chapter should provide
quite a wake-up call for those in health
care administration at the national level.
Chapter II, "Homicide in the Workplace,"
will not make comfortable reading for taxi-
cab drivers or law enforcement and security
personnel.

Part II was a much more satisfying read,
particularly the chapter, "Reflections on
Death in America." The writer astutely de-
scribes death as the taboo subject of our
times. The description of hospitals as "not a
good place to die" will strike home. "Hos-
pitals are set up to take care of acute ill-
nesses, and dying is not an illness." For
those seeking more understanding of diverse
cultural and religious attitudes toward death
and dying. Chapter 14 is very helpful. There
is much we can all learn from a better un-

derstanding of these issues and, in particu-
lar, the emphasis on not dying alone. Chap-
ter 15, "A Death in the Family," illustrates
the importance of consistency of both care
and of the information imparted to the fam-
ily, in particular, of setting reasonable goals.
The description of the dying process of an
old man with a stroke is a damning indict-
ment of a flawed health care system that
places more emphasis on financial consid-
erations than on care in the true sense of the
word. For Chapter 16, "Gender Differences
in Coping with Life-Threating Disease," 1
would have preferred to see a more "user-
friendly" section on coping mechanisms
than this research-oriented contribution.
This is where the book fails in efforts to
strike the right balance for a mixed reader-
ship. On the other hand, the chapter on eu-
thanasia and assisted suicide achieves ex-
cellence for both content and balance.

Part III deals with health care options for
the terminally ill. Four of every 10 people
over the age of 65 will be admitted to a
nursing home at some stage of their lives.
This section will be of value to those need-
ing, providing, and regulating this care at
both local and national levels. There is ad-
vice to those with and without Medicare
coverage and for those whose coverage is
incomplete. Insurance issues are covered in
Chapter 21, which also describes the vari-
ety of available long-term care facilities and
their inherent costs. Nursing homes are de-
scribed in Chapter 23, along with advice for
advance planning. The level of detail pro-
vided in this chapter is impressive. The
theme continues with a very helpful descrip-
tion of hospice care. On the other hand, the
lack of real information in the chapter on
advance directives leaves much to be de-
sired, particularly concerning their scope,
detail, validity, and activation. The reader is
basically provided with a list of contact tele-
phone numbers for seeking advice. Here was
a missed opportunity to really educate the
public on this issue.

Part IV deals with end-of life-medical
care, with variable success. The chapter on
intensive care unit effectiveness is overlong
and is relevant to intensive care unit prac-
titioners and planners but not to other read-
ers of the book. The discussion of "futility"
in Chapter 32 is .sound, but the complicated
ethical issues are deserving of more space
that could easily have been liberated from
other chapters. There is some duplication:
eg, assisted suicide is the theme of more
than one chapter. Chapter 36, on the burden

of the elderly caregiver, again suffers firom
the problem of using primary research data
and the language of a research publication
when a more balanced article to assist the
elderly lay caregiver might have been more
appropriate.

Part V, "Approaching Death," opens with
an appropriate plea in Chapter 44 to estab-
lish research priorities for better understand-
ing of the broad constellation of symptoms
experienced at the end of life. This requires
better assessment tools, outcome studies on
the effectiveness of better symptom control,
and innovative approaches to specific prob-
lems such as neuropathic pain. The proceed-
ings of a workshop on symptoms of termi-
nal illness are then described in some detail,
making it clear that there is much to be
done in this field. More helpful to the gen-
eral reader will be Chapter 45, which well
describes the dying process and the changes
to be expected. The section concludes with
contributions on declaration and certifica-
tion of death.

Section 6 includes information for those
having to make arrangements for funerals.
It deals generally with financial consider-
ations that are relevant after death. It has a
more practical tone. Ethical issues around
transplantation and use of body tissue for
research are discussed in reasonable detail.
The book concludes with a detailed section
on bereavement.

There is much that is excellent in this
book beyond the early chapters. It is well
referenced and up to date. Chapters that pro-
vide advice and generally act as resources
for the varied readership certainly succeed.
Those providing raw data with little discus-
sion are the least useful. The reader will
need to pick and choose with .some care,
depending on the need for personal and prac-
tical advice, but in general the sourcebook
will be an extremely useful resource for those
concerned with death and dying in the United
States

Graeme Rocker MD

Division of Respirology

Halifax Infirmary

Dalhousie University

Halifax, Nova Scotia

Canada

Courage and Information for Life with
Chronic Obstructive Pulmonary Disease.

Rick Carter PhD, Brooke Nicotra MD and
Jo- Von Tucker, (COPD Patient). With fore-
words by Thomas Petty MD and Brian Tiep

1414

Respiratory Care • November 2000 Vol 45 No 11

Books, Films, Tapes, & Software

MD. Onset, Massachusetts: New Technol-
ogy Publishing. 1999. Soft-cover, spiral-
bound, illusunted, 191 pages, $29.95.

The best description of this book is the
subtitle. "The Handbook for Patients. Fam-
ilies and Care Givers Managing COPD
[chronic obstructive pulmonary disease]."" It
is the product of 3 individuals with expertise
on the topic, a physician and an exercise
physiologist (both with substantial experi-
ence in the treatment of patients with this
breathing disorder), and. importantly, a pa-
tient who provides her insights from living
with COPD.

The contents include a long list of topics
that are an integral part of living, treating,
and dealing with this chronic illness. The
unique nature of the book"s design is that it
provides a dialogue between the 3 authors
and the reader, providing insights that are
unique to their perspectives on this disease.
This method of presentation allows the read-
er — patient or caregiver — the opportunity to
learn about the topics from these different
points of view. Overall, the content is up to
date and thorough, and provides a "recipe
for living,"" as one chapter is entitled.

The obvious intended readership is pa-
tients who suffer with COPD, but it is also
of value to their caregivers, teaching them
how to help their patients cope with the
intrusion of this disease on their daily lives.
As a result, it is useful to patients, but, im-
portantly, also to physicians, respiratory
therapists, nurses, and physical therapists
who care for patients with chronic breath-
ing problems.

The primary premise of the book is to
encourage a dialogue between doctor and
patient in order to assure that there is a jointly
held responsibility for addressing this dis-
ease. Although the book is written primar-
ily for patients, it emphasizes the responsi-
bility of their caregivers to include the
patients in the decision-making. The authors
challenge the patient to become an active
participant in the management of his or her
disease in order to achieve the best possible
quality of life and medical care. While this
may seem a daunting task and confusing to
patients who are new to the terminology of
this disease, the book provides ample assis-
tance with the use of a detailed glossary.

The book is written in the first person,
describing the experiences of the patient-
author as she pursues a better understanding
of COPD and its treatments. Comments are
interjected by the other two authors, iden-
tified by their initials. This is a unique style

that sometimes is a little disconcerting to
the reader, throwing off his or her train of
thought, but one quickly becomes accus-
tomed to this style as the reading proceeds.

The content is well selected and orga-
nized, and is lauded in the supporting fore-
words by two national experts in the care of
this disease. Drs Tom Petty and Brian Tiep.
The book begins by urging the patient to
"take charge of COPD."' and immediately
addresses frequently asked questions. The
chapters proceed through the basics that de-
scribe the disea.se and its treatments, followed
by chapters that provide more specifics.

The medical information is current and
accurate, but the clinical experiences are
written from the perspective of this individ-
ual patient. Although it describes her jour-
ney to an understanding of this disease and
its treatment, it is unique in that most pa-
tients would not pursue their disease in the
detail that she describes, particularly trav-
eling across the country to obtain expert
opinions. Average COPD patients thus may
find it hard to relate to her experience, as
their resources are likely to be much more
limited than what were available to her. The
recommendations that flow from this pa-
tient-author's experience therefore may be
somewhat frustrating to the average patient/
reader, who may not have the same free-
dom of choice and selection, limited by the
individual health plan and financial reserves.

Most patients with COPD are not cared
for by a pulmonary specialist, as the pa-
tient-author describes. Nonetheless, they can
still obtain good quality care in the hands of
a primary care physician who has the ap-
propriate knowledge and interest in the care
ofthis chronic disease. This experience urges
patients not to be content with an average
level of care, but to suive to achieve the
optimal benefits that their local health care
systems can provide. The additional benefit
is that the patient's family is included as an
important audience as well, urging the pa-
tient to seek necessary support wherever it
can be found.

The style is generally clear and readable,
but there are occasional annoyances of try-
ing to follow which of the 3 authors is mak-
ing a comment, causing the reading to be
somewhat disjointed at times. A substantial
amount of the book is allocated for the dis-
cussion of exercise and nutrition, in consid-
erable detail, which may be more than the
average patient can assimilate. It is also
unique that sleep and sex are combined into
one chapter, although they are distinctiy dif-

ferent topics. Whereas one could argue about
the specifics of some of the authors' rec-
ommendations on the nuances of c£ire for
this disease, this does not negate the value
of the book.

The general appearance of the book is
user-friendly. The font is of reasonable size,
although it may be somewhat small for the
eyes of the elderly reader. Typographical
errors are essentially nonexistent, and the
photographs and other graphics are helpful,
although limited. Ample supplementary re-
sources are provided, including checklists,
Web sites, and a bibliography. The index is
inclusive, and the contents are described in
significant detail, making it a useful refer-
ence resource much more than an ongoing
reading experience.

In summary, this publication is an excel-
lent, concise, easy-to-read resource for both
patients and professionals, and is filled with
materials that would otherwise be difficult
to find without seeking multiple other
sources. It addresses all the major issues
that impact COPD patients and emphasizes
the importance of patients becoming partic-
ipants in their disease management. It tends
to utilize pulmonary rehabilitation as a
model. Since these formal programs are not
universally available throughout the coun-
try, particularly to patients with lower eco-
nomic means, the book provides an oppor-
tunity for a patient to attempt to achieve
similar goals when appropriate professional
help is not available.

In addition to patients with COPD, this
text should be recommended reading for all
pulmonary rehabilitation personnel, and be
made readily available to organizations such
as the American Lung Association, which
patients often contact for advice and direc-
tion. Ideally, it should be on the bookshelf
of all physicians who care for patients with
this disease on an ongoing basis.

Paul A Selecky MD

Pulmonary Department

Hoag Memorial Hospital

University of California, Los Angeles

Newport Beach, California

Good If Not Great Living with Lung Dis-
ease. Phil Peterson. Charlotte, North Caro-
lina: Raven Publishers. 1999. Soft-cover,
117 pages, $14.50 (discounted in quantity).
Because of the increase in lung disease
in the United States, many practitioners and
patients are seeking help from many sources
available to them. This book is aimed pri-

Respiratory Care • November 2000 Vol 45 No 1 1

1415

Books, Films, Tapes, & Software

marily at oxygen-dependent patients and the
practitioners who care for them when it
comes to traveling with oxygen. It also in-
cludes a detailed resource guide. In review-
ing this book I asked the assistance of two
of my pulmonary rehabilitation patients, so
as to give Respiratory Care readers the
opportunity to have this book reviewed by
people actually living with chronic obstruc-
tive pulmonary disease (COPD).

Chapter 1 deals with the beginning use
of medical equipment such as nebulizers and
metered dose inhalers — very basic, but rel-
evant to people with COPD. Patients with
this disease will learn to be careful when
going on trips and to pack medical supplies
needed first.

Chapter 2 discusses metered-dose inhal-
ers and different types of nebulizers avail-
able today and how to shop for the right one.

Chapter 3 evolved with the author's
wife's (Mary B) use of oxygen on a con-
tinuous basis. This chapter highlights the
many sources of oxygen systems available
to COPD patients today and will greatly
help them make the right choice for their

special needs. However, all this information
is slightly confusing for the reader not using
oxygen.

Chapters 4 through 5 discuss oxygen use
on trips, including ocean cruises. To some
COPD patients, the use of oxygen on cruises
appears too much of a burden to make the
effort worthwhile. The chapters also include
practical tips and a discussion of the impor-
tance of a travelling companion.

Chapters 7 through 10 discuss the pur-
chase of wheelchairs and other medical
equipment, as well as companies that may
be helpful to travelers with oxygen. Tobacco
issues are addressed, as are allergies, trig-
gers, and the oxygen supplies necessary for
different situations.

Chapters 11 through 13 deal with air
travel and the never-ending difficulties as-
sociated with such travel. Bus transporta-
tion is also discussed, as is travelling with
oxygen in other countries.

Chapter 14 discusses children, respira-
tory illnesses, and oxygen usage. Chapter
15 lists items needed for safety and conve-
nience when traveling.

This book has a good table of contents
and 35 pages of names, addresses, and tele-
phone numbers of relevant associations and
resources available to COPD patients. My 2
contributors and I feel that the book is well
presented and easy to read. It appears to
deal with the oxygen-user only and not the
general population of COPD patients. The
book is simply enough written for all COPD
patients to understand, but it is also a good
source of references to pulmonary special-
ists. I would highly recommend it as a wel-
come addition to the physician's office and
all pulmonary rehabilitation programs. The
title should indicate that the text is written
for oxygen-dependent patients and deals pri-
marily with traveling.

Julian M Roy RRT
Thomas Reilly, Phase III Client
Kenny Moore, Phase III Client

Pulmonary Rehabilitation Services
Halifax Medical Center,
Daytona Beach, Florida

CORRECTIONS

In the "Consensus Statement: Aerosols and Delivery Devices" (Respir Care 2000:45(6):589-596), Table 3 on Page 593 contains an
erroneous dosage. The dose for salmeterol xinafoate, DPI (dry power inhaler), is listed as 2 doses bid. The correct dosage for the DPI
is 1 dose bid.

In the article, "The Effects of Pressure Control Versus Volume Control Assisted Ventilation on Patient Work of Breathing in Acute
Lung Injury and the Acute Respiratory Distress Syndrome", by RH Kallet et al (Respir Care 2000;45(9): 1085-1096), in 3 sentences the
inspiratory flow symbol ( Vi) was erroneously used instead of the power symbol ( W).

Page 1089, column 2, paragraph 2, should read:

"PCV was associated with significantly lower patient WOE, APgs, and W than was VCV (Table 2)."
Page 1091, column I, line I should read:

"Measurements of WOB, W, pressure-time index, PTP, and the rapid shallow breathing index ...."
Page 1092, column 2, line 1 should read:

"... W are mechanical correlates of respiratory muscle oxygen consumption."

1416

Respiratory Care • November 2000 Vol 45 No 11

News releases about new products and services will be considered tor publication in this section.

There is no charge for these listings. Send descriptive release and glossy black and white photographs

to RESPIRATORY CARE. New Products & Services Depl. 1 1030 Abies Lane. Dallas TX 75229-4593.

The Reader Service Card can be found at the back of the Journal.

New Products
& Services

Pulse Oximeter. Datex-Ohmeda Inc,
Ohmeda Medical, and Masimo Corpo-
ration have joined together to distribute
Masimo's new Radical^^' Signal Ex-
traction pulse oximeter. Datex-Ohmeda
press materials describe the Radical
pulse oximeter as the first end-user
product developed by Masimo that uses
the company's Signal Extraction Tech-
nology (SET). The company says SET
is a method for measuring signals accu-
rately and reliably in the presence of
patient motion and low perfusion. Ac-
cording to Datex-Ohmeda, the device
can be used as a bedside monitor, a
handheld oximeter, or can upgrade ex-
isting multi-parameter monitors to
Masimo SET through its SatShare^^
interface. For more information from
Datex-Ohmeda, circle number 179 on
the reader service card in this issue, or
send your request electronically via
"Advertisers Online" at http://www.
aarc.org/buyers_guide/

Digital Polysomnograph. Grass-Tele-
factor product group, Astro-Med Inc
has recently introduced the Sonoma^'^.
The company calls the product a com-
pact system that combines modular,
high-performance amplifiers with a
powerful software program called
Gamma®, and their Computer Assisted
Sleep Staging system called CAST™'.
The company says the heart of the sys-
tem is comprised of Grass amplifiers

that allow complete control over all
channels and settings. Grass-Telefac-
tor/Astro-Med describes the system as
a miniature, user-configurable, 16- or
20- channel modular amplifier system
capable of recording and interfacing all
bioelectric PSG signals and auxiliary
sensors and instruments. For more in-
formation from Grass-Telefactor prod-
uct group, Astro-Med Inc, circle num-
ber 180 on the reader service card in
this issue, or send your request elec-
tronically via "Advertisers Online" at
http://www.aarc.ora/buyers guide/

Asthma Drug. Merck's asthma drug
Singulair® (montelukast sodium) in 4
mg tablets has recently gained FDA ap-
proval to help control asthma in chil-
dren two to five years of age. Accord-
ing to the company. Singulair is the
first asthma controller therapy in more
than 15 years indicated for children as
young as two. Merck says the cherry-
flavored chewable tablets are also
available in 5 mg tablets for children
ages 6 to 14 and in 10 mg tablets for
adolescents and adults 15 and older.
For more information from Merck, cir-
cle number 181 on the reader service
card in this issue, or send your request

electronically via "Advertisers Online"
at http://www.aarc.org/buyers_guide/

Blood Gas Analyzer. Radiometer has
recently introduced the ABL™700.
The company says this product offers a
fully quantitative whole blood mea-
surement of bilirubin and fetal
hemoglobin on a blood gas analyzer.
Radiometer also says this new device
makes it possible to measure 17 of the
most critical care parameters with only
a few drops of blood. According to the
company, from 95 |iL of whole blood,
bilirubin and fetal hemoglobin can be
measured simultaneously with any
combination of pH, blood gas, elec-
trolyte, metabolite, and oximetry pa-
rameters. They also say that sample
size can go down to just 35 ^iL depend-
ing on the number of parameters being
measured. For more information from
Radiometer, circle number 182 on the
reader service card in this issue, or
send your request electronically via
"Advertisers Online" at http;//www.
aarc.org/buyers_guide/

RESPIRATORY CARE • NOVEMBER 2000 VOL 45 NO 1 1

1417

Notices

Notices of competitions, scholarships, fellowships, examination dates, new educational progi^ms.

and the like will be listed here free of charge. Items for the Notices section must reach the Journal 60 days

before the desired month of publication (January 1 for the March issue, February 1 for the April issue, etc). Include all

pertinent information and mail notices to RESPIRATORY CARE Notices Dept. 1 1030 Abies Lane. Dallas TX 75229-4593.

Scit«tu,lc«L PlO'^Cd^d^O-t'^ ^O-UKct^ 2001

Pn^ram #1 Taking the Mystery Out of Ventilator
Weaning for Children— Peter Betit BS RRT FAARC;
Host Richard D Branson BA RRT FAARC— Video March
13 Audio April]

Program #2 Pulmonary Rehabilitation: Standard Care
for Chronic Lung Disease Patients — ^Trina Limberg BS
RRT; Host Thomas J Kallstrom RRT FAARC— Video
March 27 Audio April 17

Pn^^ram #3 Noninvasive Ventilation: The Latest

Word— Dean R Hess PhD RRT FAARC; Host Richaid D
Branson BA RRT FAARC— Video April 24 Audio May 29

Program #4 Patient Education for the Asthmatic —

Tracey Mitchell RRT; Host Thomas J Kallstrom RRT
FAARC— Video May 22 Audio June 19

Pn^ram #5 ARDS: The Disease and Its Management —

Leonaid D Hudson MD; Host David J Pierson MD
FAARC— Video June 26 Audio July 17

Program #6 New Respiratory Drugs: What, When,

and How— Joseph L Rau PhD RRT FAARC; Host
Patrick J Dunne MEd RRT FAARC— Video August 14
Audio September 1 1

Program #7 Invasive Ventilation: The Latest Word —

Richard H KaUet MS RRT; Host Richard D Branson BA
RRT FAARC— Video September 25 Audio October 16

Program #8 Test Your Lungs-Know Your Numbers-
Prevent Emphysema — ^Thomas L Petty MD FAARC;
Host David J Pierson MD FAARC— Video October 23
Audio November 20

Call for Papers

for the 2001 edition of the Respiratory Care Education Annual. The
Annual is a refereed journal committed to dissemination of research
and theory in respiratory care education. The editors seek rejx)rts of
research, philosophical analyses, theoretical formulations, interpretive
reviews of the literature, and point-of-view es.says. Manuscripts should
be submitted in three copies. The cover page should contain (a) the title
of the manuscript; (b) full names, institutional affiliations, and positions
of authors; and (c) acknowledgments of formal contributions to the
work by others, including support of research, if any. The first page
should repeat the title and include an abstract of no more than 120
words. The name(s) of authors) should not appear on this or subse-
quent pages. For rules governing style, consult the fourth edition of the
Publication Manual of the American Psychological Association. Send
all submissions to the Education Dept, American Association for
Respiratory Care, 11030 Abies Lane. Dallas, TX 75229-4593.
Deadline for submissions is December 1 , 2000.

Helpful lJJeb|Sites

American Association for Respiratory Care

http://www.aarc.org

— Current job listings

— American Respiratory Care Foundation
fellowships, grants, & awards

— Clinical Practice Guidelines

National Board for Respiratory Care

http://www.nbrc.org

RESPIRATORY CARE online

http://www.rcjournal.com

— Subject and Author Indexes

— Contact the editorial staff

— Open FORUM; submit your abstract online

Asthma Management
Model System

http://www.nhlbi.nih.gov

Keys to Professional Excellence

http://www.aarc.org/keys/

Committee on Accreditation for Respiratory Care

http://www.coarc.com

The National Board for Respiratory Care —
Examination Fees ror 200U

Examination

CRT

Perinatal/Pediatric
CPFT
RPFT

RRT

(Written & CSE)

Examination Fees

$190 (new applicant)
$150 (reapplicant)

$250 (new applicant)
$220 (reapplicant)

$200 (new applicant)
$170 (reapplicant)

$250 (new applicant)
$170 (reapplicant)

$190 (new - written only)

$200 (new - CSE only)

$390 (new - both)

For information about other services or fees, write to the

National Board for Respiratory Care,

83 10 Nieman Road. Lenexa KS 662 14, or call

(913) 599-4200, FAX (913) 541-0156.

ore-mail: nbrc-info@nbrc.org

1418

Respiratory Care • November 2000 Vol 45 No 1 1

Not-for-profit organizations are offered a free advertisement of up to eight lines to appear, on a space-available

basis, in Calendar of Events in RESPIRATORY CARE. Ads for other meetings are priced at $5.50 per line and require

an insertion order. Deadline is the 20th of the month two months preceding the month in which you wish the ad to run.

Submit copy and insertion orders to Calendar of Events, RESPIRATORY CARE, 1 1030 Abies Lane, Dallas TX 75229-4593.

Calendar
of Events

Date

AARC & Affiliates Programs

Contact

Nov. 18-19

Disease Management of Asthma
Course; Dallas, TX

AARC, (972) 243-2272

Dec. 5

Professor's Rounds Teleconference
with Videotape

AARC, (972) 243-2272

Feb. 7-9, 2001

10th Annual Winter Meeting; Davis, WV

WVSRS: Jay Wildt, (304) 442-7474,
jay.wildt@mghwv.org or Anna Parkman
(304) 357-4837, aparkman@ucwv.edu

Date

Other Meetings

Contact

Dec. 5-7

Cardiorespiratory Diagnostics 2000;
Orlando, FL

Medical Graphics

Corporation, www.medgraph.com;

Mari Orke, (800) 950-5597,

ext. 444

March 7-9

8th International Conference on Home
Mechanical Ventilation; Lyon, France

JIVD: Brigitte Hautier,
-h33 (0)4 78 39 08 43,
brigitteHautier_JIVD@compuserve.com,
www.jivd-france.com

MARK YOUR CALENDARS!
FUTURE AARC CONGRESSES

December 1-4^001
San Antonio, Texas

October 5-8, 2002
Tampa, Florida

December 8-11, 2003
Las Vegas, Nevada

December 4-7, 2004
New Orleans, Louisiana

Respiratory Care • November 2000 Vol 45 No 1 1

1419

VOLUME OF

BOUriD

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Care

AVAILABLE

Volume 44 is bound in a blue-buckram cover and moy be imprinted, free of
charge, with your name or the name of your organizotion. Each volume is
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Available for a limited time, older bound volumes at discounted rates.

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Educate your patients, staff, and the public on
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Respiratory Care • Open Forum 2001

The American Association for Respiratory Care and its sci-
ence journal. Respiratory Care, invite submission of brief
abstracts related to any aspect of cardiorespiratory care. The
abstracts will be reviewed, and selected authors will be invited
to present posters at the Open Forum during the AARC In-
ternational Respiratory Congress in San Antonio, Texas, De-
cember 1-4, 2001. Accepted abstracts will be published in the
October 2001 issue of RESPIRATORY Care. Membership in
the AARC is not required for participation. All accepted ab-
stracts are automatically considered for ARCF research grants.

SPECIFICATIONS— READ CAREFULLY!

An abstract may report (1) an original study, (2) the eval-
uation of a method, device or protocol, or (3) a case or case
series. Topics may be aspects of adult acute care, continuing
care/rehabilitation, perinatology/pediatrics, cardiopulmonary
technology, or health care delivery. The abstract may have been
presented previously at a local or regional — but not nation-
al — meeting and should not have been published previously
in a national journal. The abstract will be the only evidence
by which the reviewers can decide whether the author should
be invited to present a poster at the OPEN FORUM. Therefore,
tfie abstract must provide all important data, findings, and con-
clusions. Give specific information. Do not write such gen-
eral statements as "Results will be presented" or "Significance
will be discussed."

ESSENTIAL CONTENT ELEMENTS

Original study. Abstract must include ( 1 ) Background: state-
ment of research problem, question, or hypothesis; (2) Method:
description of research design and conduct in sufficient de-
tail to permit judgment of validity; (3) Results: statement of
research findings with quantitative data and statistical anal-
ysis; (4) Conclusions: interpretation of the meaning of the re-
sults.

Method, device, or protocal valuation. Abstract must in-
clude { 1 ) Background: identification of the method, device,
or protocol and its intended function; (2) Method: description
of the evaluation in sufficient detail to permit judgment of its
objectivity and validity; (3) Results: findings of the evalua-
tion; (4) Experience: summary of the author's practical ex-
perience or a lack of experience; (5) Conclusions: interpre-
tation of the evaluation and experience. Cost comparisons should
be included where possible and appropriate.

Case report Abstract must report a case that is uncommon
or of exceptional educational value and must include ( 1 ) In-
troduction: relevant basic information important to understanding
the case. (2) Case Summary: patient data and response, de-
tails of interventions. (3) Discussion: content should reflect
results of literature review. The author(s) should have been
actively involved in the case and a case-managing physician
must be a co-author or must approve the report.

FORMAT AND TYPING INSTRUCTIONS

Accepted abstracts will be photographed and reduced by
40%; therefore, the size of the original text should be at least
10 points. A font like Helvetica or Times makes the clearest
reproduction. The first line of the abstract should be the title
in all capital letters. Title should explain content. Follow tide
with names of all authors (including credentials), institution(s),
and location; underline presenter's name. Type or electron-
ically print the abstract single spaced in one paragraph on a
clean sheet of paper, using margins set so that the abstract
will fit into a box no bigger than 18.8 cm (7.4") by 13.9 cm
(5.5"), as shown on the reverse of this page. Insert only one
letter space between sentences. Text submission on diskette
is allowed but must be accompanied by a hard copy. Data may
be submitted in table form, and simple figures may be included
provided they fit within the space allotted. No figure, illustration,
or table is to be attached to the abstract form. Provide all au-
thor information requested. Standard abbreviations may be em-
ployed without explanation; new or infrequently used ab-
breviations should be spelled out on first use. Any recurring
phrase or expression may be abbreviated, if it is first explained.
Check the abstract for ( 1 ) errors in spelling, grammar, facts,
and figures; (2) clarity of language; and (3) conformance to
these specifications. An abstract not prepared as requested may
not be reviewed. Questions about abstract preparation may be
telephoned to Linda Barcus at (972) 406-4667.

Early Deadline Allowing Revision. Authors may choose
to submit abstracts early. Abstracts postmarked by May 31,
2001 will be reviewed and the authors notified by letter only
to be mailed by June 15, 2001. Rejected abstracts will be ac-
companied by a written critique that should, in many cases,
enable authors to revise their abstracts and resubmit them by
the Final Deadline (July 17, 2001).

Final Deadline. The mandatory Final Deadline is July 17,
2001 (postmark). Authors will be notified of acceptance or re-
jection by letter only. These letters will be mailed by Septem-
ber 1,2001.

Mailing Instructions. Mail (Do not fax!) 2 clear copies
of the completed abstract form, diskette (if possible), and a
stamped, self-addressed postcard (for notice of receipt) to:

2001 RESPIRATORY CARE OPEN FORUM

1 1030 Abies Lane

Dallas TX 75229-4593

submit your Open Forum abstract electronically

, visitwww.rcjournal.com ,

Respiratory Care Open Forum 2001 Abstract Form

■>3-
1^
O

E
o
00

13.9 cm or 5.5"

1. Title mustbe in all
upper case (capital)
letters, authors' full
names and text in
upper and lower case.

2. Follow title with all
authors' names
including credentials
(underline presenter's
name), institution, and
location.

3. Do not justify (ie,
leave a 'ragged' right
margin).

4. Do not use type size
less than 10 points.

5. All text and the table,
or figure, must fit into
the rectangle shown.
(Use only 1 clear, con-
cise table or figure.)

6. Submit 2 clean copies.

Mail original & 1
photocopy (along with
postage-paid postcard) to

2001 Respiratory
Care Open Forum

11030 Abies Lane
Dallas TX 75229-4593

Early deadline is
May 31, 2001
(postmark)

Final deadline is
July 17,2001
(postmark)

Electronic
Submission Is Now

Available. Visit
www.rcjournal.com

to find out more

Name & Credentials

Mailing Address

Voice Phone & Fax

Name & Credentials

Mailing Address

Voice Phone & Fax

JJ_

American Association for Respiratory Core

'A-JJljjJ

Please read the eligibility requirements for each of the classifications in the
right-hand column, then complete the applicable section. All information
requested below must be provided, except where indicated as optional.
See other side for more information and fee schedule. Please sign and date
application on reverse side and type or print clearly. Processing of applica-
tion takes approximately 15 days.

D Active
Associate

n Foreign

D Physician

n Industrial
D Special
n Student

Last Name _
First Nome

Social Security No.

Home Address

City

State

-Zip

i Phone No.

Primary Job Responsibility fcfiecir one only)

n Technical Director

D Assistant Technical Director

n Pulmonary Function Specialist

n Instructor/Educator

n Supervisor

D Staff Therapist

D Staff Technician

D Rehabilitation/Home Care

D Medical Director

D Sales

D Student

n Other, specify

Type of Business

C Hospital

n Skilled Nursing Facility

n DME/HME

n Home Health Agency

D Educational Institution

n Manufacturer or supplier

D Other, specify

Date of Birth (optional) .

Sex (optional)

U.S. Citizen?

Yes

Have you ever been a member of the AARC?
If so, when? From

Preferred mailing address: □ Home Cj Business

For office use only

FOR ACTIVE MEMBER

An individual is eligible if he/she lives in the U.S. or its territories or was an Active Member
prior to moving outside its borders or territories, and meets ONE of the following criteria: (1 ) is
legally credentialed as a respiratory core proressionol if employed in a state that mandates
such, OR [21 is a graduate or an accredited educational program in respiratory care, OR [3|
holds a credentiol issued by the NBRC. An individual who is on AARC Active Member in good
standing on December 8, 1 994, will continue as such provided his/her membership remains in
good standing.

PLEASE USE THE ADDRESS OF THE LOCATION WHERE YOU PERFORM YOUR JOB, NOT
THE CORPORATE HEADQUARTERS IF IT IS LOCATED ELSEWHERE.

Place of Employment

Address ^_^_

City

State

-Zip

Phone No.

Medical Director/Medical Sponsor

FOR ASSOCIATE OR SPECIAL MEMBER

Individuals who hold a position related to respiratory care but do not meet the requirements of
Active Member shall be Associate Members. They hove all the rights and benefits of the Asso-
ciation except to hold office, vote, or serve as choir of a standing committee. The following sub-
classes of Associate Membership are ovoilable: Foreign, Physician, and Industrial (individuals
whose primary occupation is directly or indirectly devoted to the manufacture, sale, or distribu-
tion of respiratory core equipment or supplies). Special Members are those not working in a
respiratory core-related field.

PLEASE USE THE ADDRESS OF THE LOCATION WHERE YOU PERFORM YOUR JOB, NOT
THE CORPORATE HEADQUARTERS IF IT IS LOCATED ELSEWHERE.

Place of Employment

Address

City

State

.Zip

Phone No.

FOR STUDENT MEMBER

Individuals will be classified as Student Members if they meet oil the requirements for Associate
Membership and ore enrolled in on educational program in respiratory core accredited by, or
in the process of seeking accreditation from, an AARC -recognized agency.

SPECIAL NOTICE — Student Members do not receive Continuing Respiratory Core Education
(CRCE) transcripts. Upon completion of your respiratory care education, continuing education
credits may be pursued upon your reclassification to Active or Associate Member.

School/RC Program

Address

City

State

-Zip

Phone No.

length of program

~ 1 year
~ 2 years

Expetted Date of Graduation (REQUIRED
INFORMATION)

n 4 years

n Other, specify .

Month

Year

American Association for Respiratory Care • 1 1030 Abies lane • Dallas, TX 75229-4593 • [972] 243-2272 • Fax [972] 484-2720

American Association for Respiratory Care

>f'-/y|/f!j7»:i'-i'iy-

Dentographi€ Quesfions

We request that you answer these questions in order to help us
design services and programs to meet your needs.

Check #fie Highest Degree Earned

a High School

n RC Graduate Technician

n Associate Degree

n Bachelor's Degree

D Master's Degree

D Doctorate Degree

Number oi Years in Respiratory Care

I] 0-2 years C 11-15 Years

n 3-5 years D 1 6 years or more

D 6-10 years

Job Status

D Full Time

n Part Time

Credentials

O RRT

D LVN/LPN

D CRT

D CPFT

D Physician

D RPFT

□ CRNA

D Perinatal/Pediatric

D RN

Salary

O Less than $10,000

D $10,001 -$20,000

D $20,001 -$30,000

D $30,001 -$40,000

n $40,000 or more

PLEASE SIGN

I hereby apply for membership in the American Association for Respiratory Core
and hove enclosed my dues. If approved for membership in the AARC, I will abide
by its bylaws and professional code of ethics. I authorize investigation of all state-
ments contained herein and understand that misrepresentations or omissions of
focts called for is couse for rejection or expulsion.

A yeorly subscription to RESPIRATORY CARE journal and AARC Times magazine
includes an allocation of $11 .50 from my dues tor each of these publications.

NOTE: Contributions or gifts to the AARC are not tax deductible as charitable con-
tributions for income tax purposes. However, they may be tax deductible as ordi-
nary and necessary business expenses subject to restrictions imposed as a result of
association lobbying activities. The AARC estimates that tfw nondeductible portion
of your dues — the portion which is allocable to lobbying — is 26%.

Signature
Date

Membership Fees

Payment must accompany your application to the AARC. Fees are for 12
months. (NOTE: Renewal fees are $75.00 Active, Associate-Industrial or Associ-
ate-Physician, or Special status; $90.00 for Associate-Foreign status; and
$45.00 for Student status).

D Active

D Associate (Industrial or Physician)

n Associate (Foreign)

n Special

n Student

TOTAL

$ 87.50
$ 87.50
$102.50
$ 87.50
$ 45.00'

Spetialty Sections

Established to recognize the specialty areas of respiratory care, these sections
publish a bi-monthly newsletter that focuses on issues of specific concern to that
specialty. The sections also design the specialty programming at the notional
AARC meetings.

D Adult Acute Core Section
n Education Section
n Perinatal-Pediatric Section
n Diagnostics Section
n Continuing Care-
Rehabilitation Section
n Management Section
n Transport Section
D Home Core Section
n Subacute Core Section

TOTAL

GKAND TOTAL = Membership Pee
plus optional sections

$15.00

$20.00

$15.00

$20.00

$15.00

D Total Amount Enclosed/Charged $_
D Please charge my dues (see below)

To charge your dues, complete the following:
D MasterCard
D Visa

Card Number

Card Expires /_

Signature

Mail application and appropriate fees to:
American Association for Respiratory Care • 1 1030 Abies Lane • Dallas, TX 75229-4593 • [972] 243-2272 • Fax [972] 484-2720

THE FD* MEDK Al F' R () 1) U < I s KHPORTINC PRIX^RAM

For VOLUNTARY reporting

by health professionals of adverse

events and prt>duct problems

Form Approved: OMB No. 0910-0291 Expires: 4/30/96
See OMB statement on revers*
FDA Use Only (Resp Care)

Page

B. Adverse event or product problem

I I Adverse event

2 Outcomes attributed to adverse event

(check all Iha! apply)

Product problem (e.g.. defects/malfunctions)

□ death

I I life-threatening

I I hospitalization - initial or prolonged LJ other:

I I disability

I I congenital anomaly

I I required intervention to prevent
permanent impairment/damage

3 Date of
event

4 Date of
this report

5 Describe event or problem

6 Relevant tests/laboratory data, including dates

7 Other relevant history, including preexisting medical conditions (eg., allergies,
race, pregnancy, smoking and alcohol use. hepatic/renal dysfunction, etc.)

Mail to: .MED Watch or fax to:

5600 Fishers Lane 1 -800-FDA-01 78

Rockville, MD 20852-9787

Triage uoit
sequence «

C. Suspect medication(s)

Name (give labeled strength & mfr/labeler. if known)

2 Dose, frequency & route used

3. Therapy dates (if unknown, give duration)

from/to tor best eslimaie)
#1

»2

4 Diagnosis for use (indication)

6. Lot # (if known)
#1

7 Exp. date (if known)

9 NDC # (for product problems only)

5. Event abated after use
stopped or dose reduced

*lDyesDno \Jt°f,%"''
#2 Dyes D no Dgg^Fy"''

8 Event reappeared after
reintroduction

♦iDyesDno Dgg^fy"'
»2nyesnno D^g^Fy"''

10. Concomitant medical products and therapy dates (exclude treatment of event)

D. Suspect medical device

3 Manufacturer name & address

1 Brand name

2 Type of device

6.
model # _

catalog #

serial #

lot#

other #

4 Operator of device
I I health professional
I I lay user/patient
O other:

5 Expiration date

ir^oday yn

7 If implanted, give date

(mo/day/yr)

8 If explanted, give date

(mo^Oay/yr)

9 Device available for evaluation? (Do not send to FDA)
I I yes r] no Q returned to manufacturer on

1 Concomitant medical products and therapy dates (exclude treatment of event)

E. Reporter (see confidentiality section on back)

1 Name & address

phone #

2 Health professional?

□ yes □ no

3 Occupation

5 If you do NOT want your identity disclosed to
the manufacturer, place an " X " in this box. Q

4 Also reported to

I I manufacturer
I I user facility
I I distributor

FDA Form 3500 1/96) Submlssion of 3 report does not constitute an admission that medical personnel or the product caused or contributed to the event.

ADVICE ABOUT VOLUNTARY REPORTING

Report experiences with:

• medications (drugs or biologies)

• medical devices (including in-vitro diagnostics)

• special nutritional products (dietary
supplements, medical foods, infant formulas)

• other products regulated by FDA

Report SERIOUS adverse events. An event
is serious when the patient outcome is:

• death

• life-threatening (real risk of dying)

• hospitalization (initial or prolonged)

• disability (significant, persistent or permanent)

• congenital anomaly

• required intervention to prevent permanent
impairment or damage

Report even if:

• you're not certain the product caused the
event

• you don't have all the details

Report product problems - quality, performance
or safety concerns such as:

• suspected contamination

• questionable stability

• defective components

• poor packaging or labeling

• therapeutic failures

How to report:

• just fill in the sections that apply to your report

• use section C for all products except
medical devices

• attach additional blank pages if needed

• use a separate form for each patient

• report either to FDA or the manufacturer
(or both)

Important numbers:

• 1-800-FDA-0178

• 1-800-FDA-7737

• 1-800-FDA-1088

1-800-822-7967

to FAX report

to report by modem

to report by phone or for

more information

for a VAERS form

for vaccines

If your report involves a serious adverse event
with a device and it occurred in a facility outside a doc-
tor's office, that facility may be legally required to report to
FDA and/or the manufacturer. Please notify the person in
that facility who would handle such reporting.

Confidentiality: The patient's identity is held in strict
confidence by FDA and protected to the fullest extent of
the law. The reporter's identity, including the identity of a
self-reporter, may be shared with the manufacturer unless
requested otherwise. However, FDA will not disclose the
reporter's identity in response to a request from the
public, pursuant to the Freedom of Information Act.

The public reporting burden for this collection of information
has been estimated to average 30 minutes per response,
including the time for reviewing instructions, searching exist-
ing data sources, gathering and maintaining the data needed,
and completing and reviewing the collection of information.
Send comments regarding this burden estimate or any other
aspect of this collection of information, including suggestions
for reducing this burden to:

DHHS Reports Clearance Office
Paperwork Reduction Protect (0910-0291)
Hubert H. Humphrey Building, Room 531-H
200 Independence Avenue, S,W,
Wastiington. DC 20201

"An agency may not conduct or sponsor,
and a person is not required to respond to.
a collection o) information unless it displays
a currently valid OUB control number,"

Please do NOT
return this form
to eittier of these
addresses.

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Public Health Service • Food and Drug Administration

FDA Form 3500 back Plesse UsG AcJclress Provided Below - Just Fold In Thirds, Tape and Mail

Department of

Health and Human Services

Public Health Service

Food and Drug Administration

Rockville, MD 20857

Official Business

Penalty for Private Use $300

NO POSTAGE

NECESSARY

IF MAILED

IN THE

UNITED STATES

OR APO/FPO

BUSINESS REPLY MAIL

FIRST CLASS MAIL PERMIT NO. 946 ROCKVILLE, MD

POSTAGE WILL BE PAID BY FOOD AND DRUG ADMINISTRATION

MED^J^TCH

The FDA Medical Products Reporting Program
Food and Drug Administration
5600 Fishers Lane
Rockville, MD 20852-9787

I., I.

,l,,lMl.ltMl.ll,lMltullnllltl.l..l.ll

RE/PIRATORy C&RE

Manuscript Preparation Guide

Respiratory Care welcomes original manuscripts related to the sci-
ence and technology of respiratory care and prepared according to the
following instructions and the Unifonn Requirements for Manuscripts
Submitted to BiomedicalJoumals (available at http://www.acpon-
line.org/joumals/resource/unifreqr.htm). Manuscripts are blinded and
reviewed by professionals who are experts in their fields. Authors
are responsible for obtaining written permission to publish previ-
ously-published figures and tables from the original copyright hold-
er. Accepted manuscripts are copyedited for clarity, concision, and
consistency with RESPIRATORY Care format. Before publication,
authors receive page proofs for minor correction. Published papers
are copyrighted by Daedalus Inc and may not be published elsewhere
without permission. Editorial consultation is available at any stage
of planning or writing for any submission; contact the Editorial Office.

ing physician must either be an author or furnish a letter
approving the manuscript. Must include: Title Page, Abstract, Intro-
duction, Case Summary, Discussion, and References. May also
include: Tables, Figures (if so, must include Figure Legends), and
Acknowledgments.

Point-of-View Paper: A paper expressing personal but substanti-
ated opinions on a pertinent topic. Must include: Title Page, Text,
and References. May also include Tables and Figures (if so, must
include Figure Legends).

Drug Capsule: A miniature review paper about a drug or class of
drugs that includes discussions of pharmacology, pharmacokinet-
ics, or pharmacotherapy.

Categories of Articles

Research Article: A report of an original investigation (a study).
Must include Title Page, Abstract, Key Words, Background,
Methods, Results, Discussion, Conclusions, and References. May
also include Tables. Figures (if so, must include Figure Legends),
Acknowledgments, and Appendices.

Graphics Corner: A brief case report discussing and illustrating
waveforms for monitoring or diagnosis. Should include Questions,
Answers, and Discussion sections.

Kittredge's Comer: A brief description of the operation of respiratory
care equipment. Should include information ftwm manufacturers and
editorial comments and suggestions.

Review Article: A comprehensive, critical review of the literature
and state-of-the-art summary of a topic that has been the subject of
at least 40 published research articles. Must include: Title Page, Out-
line, Key Words, Introduction, Review of the Literature, Summa-
ry, and References. May also include: Tables, Figures (if so, must
include Figure Legends), and Acknowledgments.

Overview: A critical review of a pertinent topic that has fewer than
40 published research articles. Same structure as Review Article.

Update: A report of subsequent developments in a topic that has
been critically reviewed in RESPIRATORY Care or elsewhere. Same
structure as a Review Article.

PFT Corner: A brief, instructive case report including pul-
monary function testing, accompanied by a review of the relevant
physiology and appropriate references to the literature.

Test Your Radiologic Skill: A brief, instructive case report involv-
ing pulmonary medicine radiography and including one or more radio-
graphs. May involve imaging techniques other than conventional
chest radiography.

Review of a Book, Film, Tape, or Software: A balanced, critical
review of a recent release. RESPIRATORY Care does not accept unso-
licited book reviews; please contact the Editor if you have a sug-
gestion for a book review.

Special Article: A pertinent paper not fitting one of the other categories.
Consult with the Editor before writing or submitting such a paper.

Editorial: A paper addressing an issue in the practice or adminis-
tration of respiratory care. It may present an opposing opinion, clar-
ify a position, or bring a problem into focus.

Letter: A brief, signed communication responding to an item pub-
lished in Respiratory Care or about other pertinent topics. Tables,
Figures, and References may be included. The letter should be marked
"For Publication."

Case Report: Report of an uncommon clinical case or a new or
improved method of management or treatment. A case-manag-

Preparing the Manuscript

Print on one side of white 8.5 xl 1 inch paper, with margins of at
least I inch on all sides. Double-space the text and number the pages.
Do not include author names, author institutional affiliations, or allu-
sions to institutional affiliations anywhere except on the title page.
On the Abstract page include the title but do not include author names.
Begin each of the following on a new page: Title Page, Abstract,
Text, Acknowledgments, References, each Table, each Figure, and
each Appendix. Use standard English in the first person and active
voice. Type all headings in initial-capital letters (eg. Background,
Methods, Patients, Equipment, Stafistical Analysis, Results, Dis-
cussion). Center the main section headings and place second-level
headings on the left margin.

Respiratory Care Manuscript Preparation Guide, Revised 12/99

Manuscript Preparation Guide

Abstract Please ensure that the abstract does not contain any facts
or conclusions that do not also appear in the body text. Limit the
abstract to no more than 400 words.

Key Words. Research, Review, Overview, and Special Articles
require Key Words. On the Abstract or Outline page, include a list
of 6 to 10 key words or two-word phrases.

References. Assign reference numbers in the order that articles are
cited in your manuscript. At the end of your manuscript, list the cited
works in numerical order. Abbreviate joumal names as in Index Medi-
cus. List all authors. The following examples show RESPIRATORY
Care's style for references.

Article in a joumal carrying pagination throughout the volume:

Rau JL, Harwood RJ. Comparison of nebulizer delivery meth-
ods through a neonatal endotracheal tube: a bench study. Respir
Care 1992;37(1 1): 1233- 1240.

Article in a publication that numbers each issue beginning with Page 1 :

Bunch D. Establishing a national database for home care. AARC
Times 1991;15(Mar):61,62,64.

Corporate author joumal article:

American Association for Respiratory Care. Criteria for estab-
lishing units for chronic ventilator-dependent patients in hospitals.
Respir Care 1988;33(11):1044-1046.

Article in joumal supplement: (Journals differ in numbering and iden-
tifying supplements. Supply information sufficient to allow
retrieval.)

Reynolds HY. Idiopathic interstitial pulmonary fibrosis. Chest
1986; 89(3 Suppl):139S-143S.

Abstract in journal: (Abstracts citations are to be avoided, and those
more than 3 years old should not be cited.)

Stevens DP. Scavenging ribavirin from an oxygen hood to reduce
environmental exposure (abstract). Respir Care 1990:35(1 1): 1087-
1088.

Editorial in a joumal:

Enright P. Can we relax during spirometry? (editorial). Am Rev
Respir Dis 1993;148(2):274.

Editorial with no author given:

Negative-pressure ventilation for chronic obstmctive pul-
monary disease (editorial). Lancet 1992;340(8833): 1440-1441.

Letter in joumal:

Aelony Y. Ethnic norms for pulmonary function tests (letter).
Chest 1991 ;99(4): 1051.

Corporate author book:

American Medical Association Department of Drugs. AMA drug
evaluatioas, 3rd ed. Littleton CO: Publi.shing Sciences Group; 1977.

Book: (For any book, specific pages should be cited whenever ref-
erence is made to specific statements or other content.)

DeRemee RA. Clinical profiles of diffuse interstitial pul-
monary disease. New York: Futura; 1 990:76-85.

Chapter in book with editor(s):

Pierce AK. Acute respiratory failure. In: Guenter CA, Welch MH,
editors. Pulmonary medicine. Philadelphia: JB Lippincott;
1977:26-42.

Paper accepted but not yet published:

Hess D. New therapies for asthma. Respir Care (year, in press).

Personal communication of unpublished data not yet accepted for
publication: You must obtain written permission to cite unpublished
data received via personal communication. Do not number such ref-
erences, but instead make parenthetical reference in the body text
of your manuscript. Example: "Recently, Jones found this treatment
effective in 45 of 83 patients (Jones HI, University of the Cascades,
1 999, personal communication)."

Tables. Tables should be consecutively numbered. Start each table
on a separate page. Number and title the table and give each column
a brief heading. Place explanations in footnotes, including all non-
standard abbreviations and symbols. Key the footnotes with the fol-
lowing symbols, superscripted, in the table body, and in the following
order: *, t, t, §, II, 1, **, tt. Do not use horizontal or vertical
rules or borders. Do not submit tables as photographs, reduced in
size, or on oversize paper.

Figures (illustrations). Figures include graphs, line drawings, pho-
tographs, and radiographs. Use only illustrations that clarify and aug-
ment the text. Number figures consecutively as Figure 1 , Figure 2,
etc. All the figures must be mentioned in the text. Every figure should
have a legend (a title and/or description explaining the figure). Fig-
ure legends should appear as separate paragraphs at the end of the
manuscript (after the References section), in the same computer file
as the manuscript (not in a separate file, as with the tables and fig-
ures). Do not create scanned versions of figures borrowed from other
publications; clear photocopies are preferable. To include figures
previously published in other publications, you must obtain pemiission
from the original copyright holder (see below). Figures must be of
professional quality and a copy of the article from which the figure
came should be available. If color is essential to the figure, consult
the Editor for more information. In reports of animal experiments,
use schematic drawings, not photographs. A letter of consent must
accompany any photograph of an identifiable person. If possible,
submit radiographs as prints and full-size copies of film.

Drugs. Precisely identify all drugs and chemicals used, giving gener-
ic names, doses, and methods of administration. Brand names may
be given in parentheses after generic names.

Commercial Products. In the text, parenthetically identify com-
mercial products only on first mention, giving the manufacturer's
name, city, and state or country. Example: "We performed spirom-

Respiratory Care Manuscript Preparation Guide, Revised 1 2/99

Manuscript Preparation Guide

etry (1085 System, Medical Graphics, Minneapolis, Minnesota)."
Provide model numbers if available, and manufacturer's suggest-
ed price, if the study has cost implications.

Permissions: You must obtain written permission to use pictures
of identifiable individuals or to name individuals in the Acknowl-
edgments section. You must obtain written permission from the orig-
inal copyright holder to use figures and tables from other publica-
tions. Copies of all applicable permissions must be on file at
Respiratory Care before a manuscript goes to press. Copyright
is most often held by the journal or book in which the figure or table
originally appeared and applies to the creativity, style, and form in
which the facts/data are presented to the reader; the facts themselves
are not copyright-protectable. Therefore, if you were asking per-
mission to reproduce a table or figure directly from a journal or book,
or with minor adaptations, pwrmission would be necessary. How-
ever, if you intend to extract some data from text or illustrations and
present them in an entirely new form, permission would not be need-
ed. Simply cite the source of the data using the following statement:
"Figure adapted from data published in ..."

Ethics. When reporting experiments on human subjects, indicate
that procedures were conducted in accordance with the ethical stan-
dards of the World Medical Association Declaration of Helsinki (see
RespirCare 1997;42(6):635-636) or of the institution's committee
on human experimentation. State that informed consent was
obtained. Do not use patient's names, initials, or hospital numbers
in text or illustrations. When reporting experiments on animals, indi-
cate that the institution's policy, a national guideline, or a law on
the care and use of laboratory animals was followed.

Statistics. Identify the statistical tests used in analyzing the data and
give the prospectively determined level of significance in the Meth-
ods section. Report acftial p values in the Results section. Cite only
textbook and published article references to support choices of tests.
As with commercial products (see above), parenthetically identi-
fy any general-use or commercial computer programs used.

Units of Measurement. Express measurements of length, height,
weight, and volume in metric units appropriately abbreviated; tem-
peratures in degrees Celsius; and blood pressures in millimeters of
mercury (mm Hg). Report hematologic and clinical-chemistry mea-
surements in conventional metric and in SI (Systeme Internationale)
units (units and conversion factors listed at Respir Care
1997;42(6):640). Show gas pressures (including blood gas tensions)
in millimeters of mercury (mm Hg).

abbreviations. Do not use abbreviations in the title, in section head-
ings, and do not use unusual abbreviations in the abstract. Use an abbre-
viation only if the term occurs 4 or more times in the paper. Define
all abbreviations (ie, write out the full term on first mention, followed
by the abbreviation in parentheses) and thereafter use only the abbre-
viation. Standard units of measurement and scientific terms can be
abbreviated without explanation (eg, L/min, mm Hg, pH, O2).
Please use the following forms: cm H2O (not cmH20), f (not bpm),
L (not I), L/min (not LPM, Vmin, or Ipm), mL (not ml), mm Hg
(not mmHg), pH (not Ph or PH), p > 0.001 (not p>0.001), s (not sec),
Spo, (arterial oxygen saturation measured via pulse-oximetry).

Prior and Duplicate Publication. In general, do not submit work
that has been published or accepted elsewhere, though in special
instances the Editor may consider such material if the original pub-
lisher grants permission. Please consult the Editor before submit-
ting such work.

Authorsliip. All persons listed as authors should have participat-
ed in the reported work and in the shaping of the manuscript, all must
have proofread the submitted manuscript, and all should be able to
publicly discuss and defend the paper's content. A paper of corporate
authorship must specify the key persons responsible for the article.
Attribution of authorship is not based solely on solicitation of fund-
ing, collection or analysis of data, provision of advice, or similar ser-
vices. Persons who provide such ancillary services may be recog-
nized in an Acknowledgments section.

Reviewers: Please supply the names, credentials, affiliations, address-
es, and phone/fax numbers of 3 professionals whom you consider
expert on the topic of your paper. Your manuscript may be sent to
one or more of them for blind peer review.

Submitting the Manuscript

Submit three printed copies and one (3.5-inch) computer diskette.
The printed copies should each include photocopies of all of the Fig-
ures, Tables, and Appendixes. On the diskette, the manuscript should
be in one file and the tables in a separate file. If soft copies of the fig-
ures are available, they should also be in a separate file. However,
do not create scanned versions of figures borrowed from other pub-
lications; clear photocopies are preferable. Include the completed
Cover Letter and Checklist (see next page) and permission letters.
Mail to Respiratory Care, 600 Ninth Avenue, Suite 702, Seat-
tle WA 98104. Do not fax manuscripts. Receipt will be acknowledged.

Conflict of Interest. On the cover page, authors must disclose any
liaison or financial arrangement they have with a manufacturer or
distributor whose product is addressed in the manuscript or with the
manufacturer or distributor of a competing product. Such arrange-
ments do not disqualify a paper from consideration and are not dis-
closed to reviewers. Reviewers are screened for possible conflict
of interest.

Abbreviations and Symliols. Use standard abbreviations and sym-
bols, listed at Respir Care 1997;42(6):637-642. Do not create new

Respiratory Care
Editorial Office:

600 Ninth Avenue, Suite 702
Seattle W A 98104

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rcjoumal@aarc.org

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RESPIRATORY Care Manuscript Preparation Guide, Revised 12/99

Cover Letter & Checklist

A copy of this completed form must accompany all manuscripts submitted for publication.

Title of Paper:

Publication Category:

Corresponding Author: Phone: FAX:

Mailing Address:

Reprints: □ Yes □ No E-mail Address:

"We, the undersigned, have all participated in the work reported, proofread the accompanying manuscript, and approve its sub-
mission for publication." Please print and include credentials, title, institution, academic appointments, city and state. If more
than 4 authors, please use another copy of this form.*

*First Author:

Author Signature/Date.

'Second Author:

•Third Author:

Author Signature/Date.

"Fourth Author:

Author Signature/Date,

Has this research been presented in any public forum? □ Yes □ No
If yes, where, when and by whom?

Has this research received any awards? □ Yes □ No
If yes, please describe.

Has this research received any grants or other support, financial or material? □ Yes □ No
If yes, please describe.

Do any of the authors of this manuscript have a financial interest in (or a commercial or consulting relationship to) any of the
products or manufacturers mentioned in this paper or any competing products or manufacturers? □ Yes □ No

If yes, please describe.

□ Have you enclosed a copy of the manuscript on diskette?

□ Is double-spacing used throughout entire manuscript?

□ Are all pages numbered in upper-right corners?

□ Are all references, figures, and tables cited in the text?

□ Has the accuracy of the references been checked, and are they correctly formatted?

□ Have SI values been provided?

□ Has all arithmetic been checked?

□ Have generic names of drugs been provided?

□ Have necessary written permissions been provided?

□ Have authors' names been omitted from text and figure labels?

□ Have copies of 'in press' references been provided?

□ Has the manuscript been proofread by all the authors?

□ Have the manufacturers and their locations been provided for all devices and equipment used?

Respiratory Care Manuscript Preparation Guide. Revised 1 2/99

CRCE THROUGH THE JOURNAL

REfl'IRATORy

CRCE throu^ the Journal — 2000

Answer Key

For your information, the correct answers to the 50 question for CRCE through the
Journal, which appeared in the September 2000 issue of Respiratory Care, are given
below. Deadline for submission of answer sheets for CRCE credit was October 3 1 , 2000.

10.

11. c

12. D

13. A

14. C

15. D

16. B

17. C

18. B

19. B

20. A

21. D

22. C

23. B

24. B

25. A

26. D

27. B

28. C

29. D

30. C

31. C

32. A

33. B

34. A

35. A

36. D

37. C

38. D

39. A

40. C

41. A

42. B

43. A

44. C

45. B

46. B

47. A

48. D

49. D

50. D

Respiratory Care • November 2000 Vol 45 No 11

1431

Authors
in This Issue

Back, Anthony 1412

Benditt, Joshua O 1376

Curtis, J Randall 1318, 1385

Ditillo, Betty A 1412

Fins, Joseph J 1320

Heffner, John E 1365

Manning, Harold L 1342

Moore, Kenny 1415

Mularski, Richard 1411

Reilly, Thomas 1415

Rocker, Graeme 1413

Roy, Julien M 1415

Rubenfeld, Gordon D 1318, 1399

Selecky, Paul A 1414

Sorenson, Helen M 1331, 1355

Advertisers
in This Issue

To advertise in RESPIRATOR^' CARE, contact Tim Goidsbury. 380 Tequesta Drive, Tequesta FL 33469
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classiried advertising contact Betli Binldey, Marlteling Assistant for RF.SPIRATORY CARE, at (972) 243-2272,
Fax (972) 484-6010. Dale Griffiths is the Marketing Director for RESPIRATORY CARE.

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Disclaimer. The opinions expressed in any article or editorial are those
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1432

RESPIRATORY CARE • NOVEMBER 2000 VOL 45 NO 1 1

is what
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icroprocessors

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RE/PIRA70Ry QiRE

Authors
in This Issue

Back. Anthony 1412

Benditt, Joshua O 1376

Curtis, J Randall 1318, 1385

Ditillo, Betty A 1412

Fins, Joseph J 1 320

Heffner, John E 1365

Manning, Harold L 1 342

Moore, Kenny .... .n./, y. . .- 1415

Mularski, Richard 141 1

Reilly, Thomas 1415

Rocker, Graeme 1413

Roy. Julien M 1415

Rubenfeld, Gordon D 1318, 1399

Selecky, Paul A 1414

Sorenson, Helen M 1331, 1355

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Hospital Hub.com
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1432

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