Respiratory Symptoms

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What Do I Do Now?: Palliative Care

S E R I E S E D I TO R

Margaret L. Campbell, PhD, RN, FPCN

Professor Emeritus, Wayne University College of Nursing,
Detroit, MI

OT H E R VO L U M E S IN T HE SE RIE S

Pediatric Palliative Care, Edited by Lindsay B. Ragsdale & Elissa G. Miller

Pain, Edited by Christopher M. Herndon
iii

Respiratory
Symptoms

Edited by

Margaret L. Campbell, PhD, RN, FPCN

Professor Emeritus, Wayne University College of Nursing,
Detroit, Michigan
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ISBN 978–​0–​19–​009889–​6
DOI: 10.1093/​med/​9780190098896.001.0001
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v

Contents

List of Contributors vii

Introduction xi

1. Dyspnea Assessment 1
Margaret L. Campbell

2. Reducing Dyspnea by Optimizing Treatment of Chronic

Obstructive Pulmonary Disease 7
Miranda Wilhelm and Jennifer Arnoldi

3. Treating Chronic Breathlessness in Severe Chronic Obstructive

Pulmonary Disease 21
Lynn F. Reinke, Mary M. Roberts, and Tracy A. Smith

4. Dyspnea, Chronic Obstructive Pulmonary Disease, and

Pulmonary Rehabilitation 31
DorAnne Donesky and Julie Howard

5. Treating Episodic Breathlessness 39

Yvonne Eisenmann and Steffen Simon

6. Reducing Episodic Dyspnea in Heart Failure 49

Beth B. Fahlberg and Ann S. Laramee

7. Dyspnea in Pediatric Congenital Heart Disease 61

Jennifer Wright and Jessica L. Spruit

8. Treating Chronic Dyspnea in Patients with Lung Cancer 69

Elizabeth A. Higgins, Susan Ezemenari, and Julia Arana West

9. Treating Dyspnea Through Reducing Malignant Pleural

Effusion 77
Christine A. Crader

10. Treating Dyspnea in Lung Cancer with Noninvasive

Ventilation 87
Vittoria Comellini and Stefano Nava

11. Palliative Care for Infants with Bronchopulmonary

Dysplasia 95
Christine A. Fortney and Jodi A. Ulloa
vi

12. Reducing Dyspnea by Treating Ascites 101

Habib A. Khan

13. Panting for Breath in End-​Stage Dementia 109

Hermien W. Goderie-​Plomp, Carole Parsons, David R. Mehr,
and Jenny T. van der Steen

14. Last Days with Chronic Obstructive Pulmonary Disease 119

Margaret L. Campbell

15. Withdrawal of Invasive Mechanical Ventilation 125

Margaret L. Campbell

16. Palliative Sedation for Intractable Dyspnea 135

Patricia Bramati and Eduardo Bruera

17. Sialorrhea in Amyotrophic Lateral Sclerosis 145

Mark B. Bromberg

18. Death Rattle 153

Margaret L. Campbell

Index 159

vi Contents
vi

Contributors

Jennifer Arnoldi, PharmD, BCPS Christine A. Crader, MD

Clinical Associate Professor Ascension Medical Group
Southern Illinois University Internal Medicine
Edwardsville (SIUE) School of Detroit, MI, USA
Pharmacy
DorAnne Donesky, PhD,
Edwardsville, IL, USA
ANP-​BC, ACHPN, ATSF
Patricia Bramati, MD Professor, School of Nursing
The University of Texas MD Touro University of California
Anderson Cancer Center Vallejo, CA, USA
Houston, TX, USA
Yvonne Eisenmann, MD
Mark B. Bromberg, MD, PhD University of Cologne
Department of Neurology Faculty of Medicine and
University of Utah University Hospital
Salt Lake City, UT, USA Department of Palliative
Medicine
Eduardo Bruera, MD
Cologne, Germany
The University of Texas MD
Anderson Cancer Center Susan Ezemenari, MD
Houston, TX, USA Fellow, Palliative Medicine
Division of Internal Medicine,
Margaret L. Campbell, PhD,
Palliative Medicine and
RN, FPCN
Geriatrics
Wayne State University, College
Medical University of South
of Nursing
Carolina
Detroit, MI, USA
Charleston, SC, USA
Vittoria Comellini, MD
Beth B. Fahlberg, PhD, MN, RN
Respiratory and Critical Care Unit
University of Wisconsin
University Hospital St.
Madison, WI, USA
Orsola-​Malpighi
Bologna, Italy
vi

Christine A. Fortney, PhD, RN Ann S. Laramee, MS, ANP-​BC,

Assistant Professor ACNS-​BC, CHFN, ACHPN,
The Ohio State University College FHFSA
of Nursing University of Vermont
Martha S. Pitzer Center for Medical Center
Women, Children and Youth Burlington, VT, USA
Columbus, OH, USA
David R. Mehr, MD, MS
Hermien W. Goderie-​Plomp, Professor Emeritus
MD, MSc, MSc Department of Family and
Elderly Care and Palliative Care Community Medicine
Physician University of Missouri
De Zellingen, Rotterdam, The Columbia, MO, USA
Netherlands
Stefano Nava, MD
Lecturer in Palliative Care
Department of Specialistic,
Leiden University Medical Center
Diagnostic and Experimental
Leiden, The Netherlands
Medicine (DIMES), Alma
Elizabeth A. Higgins, MD Mater Studiorum University
Associate Professor of Internal of Bologna
Medicine Bologna, Italy
Division of Internal Medicine,
Carole Parsons, PhD,
Palliative Medicine and Geriatrics
MPharm, MPSNI
Medical University of South Carolina
Lecturer in Pharmacy Practice
Charleston, SC, USA
School of Pharmacy
Julie Howard, RRT, TTS, CCM Queen’s University Belfast
COPD Case Manager Belfast, UK
Adventist Health Rideout
Lynn F. Reinke, PhD, RN
Marysville, CA, USA
Claire Dumke Ryberg, RN
Habib A. Khan, MD Presidential Endowed Chair in
Johns Hopkins Medicine End-of-Life/Palliative Care
Department of Palliative Medicine University of Utah College of
Wayne State University Nursing
Baltimore, MD, USA Salt Lake City, UT, USA

viii Contributors
ix

Mary M. Roberts, MSN, RN Jodi A. Ulloa, DNP, APRN-​CNP,

Department of Respiratory NNP-​BC
and Sleep Medicine, Westmead Assistant Professor of Clinical
Hospital Practice
Ludwig Engel Centre for The Ohio State University College
Respiratory Research, Westmead of Nursing
Institute for Medical Research Martha S. Pitzer Center for
The University of Sydney at Women, Children and Youth
Westmead Hospital Columbus, OH, USA
Westmead, New South Wales,
Jenny T. van der Steen, MSc,
Australia
PhD, FGSA
Steffen Simon, MD Associate Professor
Department of Palliative Medicine Leiden University Medical Center,
University of Cologne Department of Public Health and
Faculty of Medicine and University Primary Care
Hospital Leiden, The Netherlands
Cologne, Germany Senior Researcher
Radboud University Medical
Tracy A. Smith, MD
Center, Department of Primary
Department of Respiratory and
and Community Care
Sleep Medicine, Westmead Hospital
Nijmegen, The Netherlands
The University of Sydney at
Westmead Hospital Julia Arana West, MD
Westmead, New South Wales, Fellow, Palliative Medicine
Australia Division of Internal Medicine,
Palliative Medicine and Geriatrics
Jessica L. Spruit, DNP, CPNP-​AC
Attending Physician, Department
Pediatric Nurse Practitioner
of Emergency Medicine
Stepping Stones Pediatric Palliative
Medical University of South
Care Program
Carolina
University of Michigan
Charleston, SC, USA
Health System
Ann Arbor, MI, USA

Contributors ix
x

Miranda Wilhelm, PharmD Jennifer Wright, MS, CPNP

Clinical Associate Professor Stepping Stones Pediatric
Southern Illinois University Palliative Care
Edwardsville (SIUE) School of Michigan Medicine
Pharmacy Ann Arbor, MI, USA
Edwardsville, IL, USA

x Contributors
xi

Introduction

Margaret L. Campbell

In this volume, nearly all the chapters relate to the complex symptom
dyspnea across diagnoses, lifespan, and care settings. Other chapters relate
to oral and pharyngeal secretions. These topics are addressed from a pallia-
tive care context.
Dyspnea, also known as breathlessness, has been defined as a person’s
awareness of uncomfortable or distressing breathing. As this can only
be known by the person, the term “respiratory distress” is used as the
observed corollary relying on patient signs when the person is unable to
report dyspnea, such as infants, young children, and adults with cognitive
impairments, which may be acute or chronic.
Dyspnea develops when inspiratory effort, hypoxemia, and/​ or
hypercarbia develops, which activates three redundant brain areas. In the
cerebral cortex, the dyspneic person has an awareness of the change in
breathing efficiency. The amygdala in the subcortical temporal lobe is ac-
tivated when there is a threat to survival and produces a fear response. The
pons in the brainstem reacts by activating compensatory accelerations of
heart and respiratory rates and recruiting accessory muscles.
Assessment of dyspnea relies on self-​report from as simple as a yes-​
or-​no response to the query “Are you short of breath?” to more complex
numeric scales (0–​10) or categorical scales (none, mild, moderate, or se-
vere). For patients unable to report dyspnea, observation scales such as the
Respiratory Distress Observation Scale may be used. High-​risk patients
should be assessed at every clinical encounter.
Dyspnea is one of the most difficult symptoms to experience and is also
one of the most difficult to treat, as the evidence base for this symptom
lags behind other prevalent symptoms such as pain or nausea, to name
two. Dyspnea is prevalent in patients with cardiopulmonary disorders and
cancer, and it escalates as death approaches. The development of dyspnea in
chronic disease is a predictor of mortality.
Dyspnea may be acute when a reversible etiology presents such as pneu-
monia, pleural effusion, or ascites. It is chronic in an irreversible condition
xi

such as chronic obstructive pulmonary disease (COPD), advanced heart

failure, or congenital cardiac conditions. Episodic dyspnea may typify acute
exacerbations in chronic conditions such as heart failure.
Treating dyspnea relies on a hierarchy of responses, beginning with
treating underlying, reversible conditions such as infections, pleural
effusions, volume overload, or ascites. Nonpharmacological treatments
include pulmonary rehabilitation, noninvasive ventilation, balancing rest
with activity, and optimal positioning. Pharmacological treatments include
oxygen, bronchodilators, and opioids. In cases of refractory dyspnea, palli-
ative sedation may be indicated.
Patients receiving invasive mechanical ventilation for respiratory failure
may undergo ventilator withdrawal to afford a natural death. These patients
are at very high risk for developing respiratory distress, which warrants
careful attention to the processes to minimize distress.
Salivary secretions pose a significant problem for patients with bulbar-​
onset amyotrophic lateral sclerosis characterized by difficulties swallowing.
Treatment begins with anticholinergic medications and may include botu-
linum toxin injections or irradiation of salivary glands.
Pharyngeal secretions, also known as death rattle, develops in about
half of dying patients in the last days of life. Controversies about whether
medications are indicated or effective make up the evidence base. Ethical
concerns about medicating the patient to assuage the listener have been
raised.
The contributors to this volume have addressed all the treatments cur-
rently known for dyspnea, respiratory distress, and secretions with a case
study approach.

xii Introduction
1 Dyspnea Assessment

Margaret L. Campbell

Stella is a nursing home resident in the advanced

stage of Alzheimer’s disease. Her goals of care are
comfort-​focused, with surrogate decisions previously
made to withhold tube feedings, intubation,
cardiopulmonary resuscitation, and hospitalization.
She sleeps most of the day and night and is
noncommunicative except for sounds of displeasure
such as when being bathed or turned. Stella is at high
risk for aspiration pneumonia; she is offered a soft,
easy-​to-​swallow diet with foods such as pudding,
scrambled eggs, oatmeal, and baby food.
On daily exam a change in her breathing is noted; it
is highly likely that Stella has developed pneumonia,
probably secondary to immobility or food or liquid
aspiration. The clinical team cannot elicit a dyspnea
assessment from Stella, and they know she is at risk
for respiratory distress.

What do I do now?

1
2

WHAT IS DYSPNEA?

Dyspnea is a person’s awareness of uncomfortable or distressing breathing

that can only be known by self-​report. In symptom care a patient’s self-​
report has long been held as the gold standard for assessment. In a palli-
ative care context dyspnea should be assessed at every patient encounter,
for example in the hospital whenever vital signs are obtained, or at every
outpatient clinic visit, or at every house call for home-​bound patients.
Since dyspnea escalates as death nears, the frequency of assessment should
be increased. Several tools are available for measuring and trending dyspnea
that are appropriate in palliative care.

Unidimensional Assessment Tools

Responding to a symptom assessment requires several cognitive steps on
the patient’s part: (1) ascertain their sensation, (2) pay attention to the
clinician’s assessment instructions, (3) formulate a response, (4) commu-
nicate that response in some fashion, and (5) recall their previous report if
trending is requested. When a patient is feeling poorly or is fatigued, these
steps may pose difficulty and simpler tools are indicated.
The simplest measure is to ask for a “yes” or “no” response to the query
“Are you short of breath?” or, in the case of the mechanically ventilated
patient, “Are you getting enough air?” Knowing the presence or absence of
dyspnea is helpful, but its intensity cannot be assessed with this approach.
A more complex tool is a numeric rating scale, usually anchored at 0 for no
dyspnea and 10 for the worst possible dyspnea. Patients may need guidance
on how to use numbers to characterize their symptom intensity. A variation
to using numbers is to ask for a categorical ranking (none, mild, moderate,
severe). Some patients may find these categorical rankings easier to under-
stand and relate to their experience than a numeric rating.
Another variation that can be used to rate intensity is a visual analog
scale, typically a 100-​mm scale anchored at 0 and 100, with tick marks
at every 10 points (Figure 1.1). The patient points to a line on the scale
representing their experience and the clinician can convert that to a nu-
meric score; this approach is useful in the critical care setting with patients
who are mechanically ventilated and nonverbal. A vertical scale was pre-
ferred by patients with chronic obstructive pulmonary disease (COPD).1

2 WHAT DO I DO NOW? Respiratory Symptoms