Document 5293

99 Common Questions (and more) about Palliative Care. What is pai
pain? How is p
assessed? What are different types of pain? Why is a history of subs
substance abus
relevant to pain assessment and management? How is it assessed? How is pai
assessed in someone who is confused? Which opioids are preferred for use? Ho
should opioids be ordered? 99 Common Questions (and more) about
ab Hospice
Palliative CareWhat is breakthrough pain? How should break through
throug opioids b
ordered? What is the maximum dose of an opioid? What is the preferred
prefe
route
administration of opioids? What are the potential side effects of an oopioid? Wha
drowsiness with op
eurotoxicity? What are the interventions? How can excessive drowsin
use be decreased? How are opioids used safely in persons with renal
rena impairme
abou
What are the causes of myoclonus? 99 Common Questions (and more)
m
Hospice Palliative CareDoes unrelieved pain always require increasing
increasi the opio
ose? Should opioids ever be withheld? Should placebos ever be administered?
W
adm
other medications are used in the management of pain? What are the nonharmaceutical interventions to control pain? How can questions rega
regarding addic
e managed? How is pain managed in persons with an addiction history?
histo 99 Com
Questions (and more) about Palliative CareWhat can be done when family
fa
mem
ive or request opioids inappropriately? What is anorexia cachexia syndrome?
W
sy
re the causes? How can appetite and oral intake be optimized? What can be don
assist persons and their families cope with reduced nutritional intake
intake? Is nutritio
Common Ques
pport appropriate? What is constipation? How is it assessed? 99 Com
(and more) about Hospice Palliative Care What causes constipation? What are t
nterventions for constipation? How is diarrhea assessed? What are th
the causes? W
are the interventions? What is bowel obstruction? How is it assessed? 99 Comm
Questions (and more) about Hospice Palliative Care. What are the cau
causes? What
the interventions for bowel obstruction? What is dehydration? How is
i dehydrati
sessed? When is it appropriate to hydrate? When is it not appropria
appropriate to hydra
hydration appropriate forth
a person who has edema? How should hydration
h
b
aintained? What is nausea and vomiting? What causes nausea and vvomiting? Ho
nausea and vomiting assessed? What are the interventions to contro
control nausea an
vomiting? 99 Common Questions (and more) about Hospice Palliative
Palliativ Care Wha
delirium? What are the causes of delirium? How is delirium assessed? What are
nterventions for delirium? What is dyspnea? What are the causes dyspnea?
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How
yspnea assessed? What are the interventions for dyspnea? What are edema, asc
and lymphedema? What are the causes? How are edema, ascites and lymphede
ssessed? 99 Common Questions (and more) about Hospice Palliative Care What
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99
Common
Questions
(and more)
About
Hospice
Palliative Care
A nurse’s handbook
4 edition
Copyright Notice
Copyright © (1997 – 2013) Alberta Health Services.
This material is protected by Canadian and other international
copyright laws. All rights reserved. These materials may not
be copied, published, distributed or reproduced in any way
in whole or in part without the express written permission of
Alberta Health Services. These materials are intended for general
information only and are provided on an “as is”, “where is” basis.
Although reasonable efforts were made to confirm the accuracy
of the information, Alberta Health Services does not make any
representation or warranty, express, implied or statutory, as to
the accuracy, reliability, completeness, applicability or fitness for a
particular purpose of such information. These materials are not a
substitute for the advice of a qualified health professional. Alberta
Health Services expressly disclaims all liability for the use of these
materials, and for any claims, actions, demands or suits arising from
such use.
To seek permission to use, modify, or adapt material that is subject
to AHS copyright, contact the Edmonton Zone Palliative Care
Program via telephone at 1-780-735-7834, facsimile at
1-780-735-7640, or regular mail at Room 335, St. Marguerite Health
Services Centre, 1090 Youville Drive West, Edmonton, Alberta,
Canada, T6L 0A3.
ISBN 978-0-929064-53-6
The Authors
Editors Fourth Edition
Jacquie Peden RN MN, Consultant Independent Practice,
Westerose, AB
Sandra K. Young, MScN, RN, CHPCN(C), Clinical Nurse Specialist,
Edmonton Zone Palliative Care Program, Edmonton, AB
Ursula Bohn RN, MN, CHPCN(C), Clinical Nurse Specialist,
Palliative/End-of-Life – Calgary Zone, AB
Arlene McDonald RN, BN, Nurse Consultant, Edmonton Zone
Palliative Care Program, Edmonton, AB.
Reviewers Fourth Edition
Pablo Amigo MD, MCFP. Palliative Medicine Physician, Tertiary
Palliative Care Unit, Grey Nuns Community Hospital, Edmonton,
AB.
Darcee Bidgood MSN RN CHPCN(C) President, CHPC Nurses
Group, Victoria, BC
Carmel Collins RN BN NP-PHC, CHPCN(C), Nurse Practitioner,
Regional Palliative Care Leadership Team Rehabilitation,
Continuing & Palliative Care Program, Eastern Health, St. John’s,
NL
Connie Doucet RN CHPCN(C), Palliative Care Coordinator, Extra
Mural Program, Miramichi, NB
Joan Faily BMSc, MBBS, CCFP, Palliative Medicine Physician,
Palliative Community Consult Team, Edmonton Zone,
Edmonton, AB
Ruth Herbert BScN RN CHPCN(C), Palliative/End-of Life Care
Integrated Home Care Team, Calgary, AB
Juliana Howes RN MN CHPCN(C), Clinical Nurse Consultant,
Hospice Palliative Care Teams for Central LHIN, Newmarket, ON
Julia Johnston RN (EC) MN NP-Adult, CHPCN(C), Advanced Practice
Nurse, Mississauga Halton Palliative Care Initiative, Mississauga,
ON
Charlotte Koso RN BN CHPCN(C), Senior Manager Program
Planning & Service Integration CarePartners, Mississauga, ON
iii
Lawrence Lee MD, CCFP, Palliative Medicine Physician, Palliative
Community Consult Team, Edmonton Zone, Edmonton, AB
Deanna Makortoff BScOT(c), Occupational Therapist, Innisfail
Community Health Center, Innisfail, AB
Kathryn McGovern RN CHPCN(C), Home Care Nurse, North Zone,
Grande Prairie, AB
Joanne Mills RN MSc(A) CHPCN(C), Clinical Nurse Specialist,
Palliative Care, St Boniface Hospital Palliative Care Service,
Winnipeg, MB
Jacki Morgan RN BScN CHPCN(C), Clinical Practice Coordinator,
Central Okanagan Hospice Palliative Care Program, Kelowna, BC
Cheryl Nekolaichuk PhD R Psych, Psychologist, Tertiary Palliative
Care, Grey Nuns Community Hospital, Edmonton, AB
Doreen Oneschuk MD, CCFP, Palliative Medicine Physician, Palliative
Community Consult Team, Edmonton Zone, Edmonton, Alberta
Larissa Podilsky BScN RN, Palliative Care Nurse Consultant,
University of Alberta Hospital, Edmonton, AB
Krista Rawson RN MN, NP-Adult, Nurse Practitioner, Central Alberta
Cancer Centre, Red Deer, AB
Heather Skinner RN CHPCN(C), Home/Hospital Consult Nurse, Cape
Breton District Health Authority, Sydney, NS
Margot Sondermann BScPT, MEd, Palliative Consultant for End
Stage Lung Disease, Palliative / End of Life Care - Calgary Zone,
Calgary, AB
Simone Stenekes RN MN CHPCN(C), Clinical Nurse Specialist Pediatric Symptom Management and Palliative Care Service,
Palliative Care Program, Winnipeg Regional Health Authority
- Winnipeg, MB
Merle Teetaert RN CHPCN(C), Regional Palliative Care Coordinator,
Assiniboine Regional Health Authority, Deloraine, MB
Coby Tschanz RN PhD(c), Senior Instructor, University of Victoria,
School of Nursing, Victoria, BC
Beth Tupala RN CHPCN(C), Clinical Nurse Educator, Covenant
Health, Tertiary Palliative Care, Grey Nuns Community Hospital,
Edmonton, AB
Loretta Ward RN CHPCN(C), Program Manager, Emmanuel House,
Hamilton ON
Nathalie Warmerdam RN, Eganville, ON
iv
Sharon Watanabe, MD, FRCPC, Director, Department of Symptom
Control and Palliative Care, Cross Cancer Institute, Edmonton,
AB
Debbie Watt RN CHPCN(C), Director Clinical Management,
Bayshore Home Health, Ottawa, ON
Erik Williams BA, Health Promotion Facilitator, Comprehensive
Tissue Centre, Edmonton, AB
Terri Woytkiw RN MN CHPCN(C), Lead-Clinical Support, Seniors
Health North Zone, Onoway, AB
Shari Young RN BScN CHPCN(C), Manager, Palliative Community
Consult Team, Edmonton Zone, Edmonton, AB
Production Support, Fourth Edition
Publishing Advice and Pre-press Louise Ziola BA, some production!
Editors Third Edition
Jacquie Peden RN MN, Consultant Independent Practice, Edmonton,
AB
Donna deMoissac BScN MN CON(c) CHPCN (c), Nurse Practitioner,
Royal Alexandra Hospital, Edmonton, AB
Karen MacMillan RN BScN, Manager Unit 43, Grey Nuns Hospital,
Edmonton, AB
Tayreez Mushani-Kanji RN BScN CON(c) CHPCN(C), Community
Liaison, Cross Cancer Institute, Edmonton, AB
Reviewers Third Edition
Darcee Bidgood RN MSN CHPCN(C), Clinical Nurse Specialist,
Palliative Care, Vancouver Island Health Authority, BC
Maryse Bouvette RN BScN MEd CON(c) CHPCN (c), Coordinator
Pain and Symptom Team/Community Consult, SCO Health
Service, Ottawa, ON
Anna Maria Buhr MSW, Palliative Care Social Worker, St. Paul’s
Hospital, Saskatoon, SK
Carleen Brenneis(3) RN MHSA, Program Director, Capital Health,
Regional Palliative Care Program, Capital Health, Edmonton, AB
Barbara Campbell RN, Manager of Nursing and Inner City Health,
VON Ottawa Branch, Ottawa, ON
Pat Clark RN, Palliative Home Care, Saskatoon Health Region,
Saskatoon, SK
v
Paul Daeninck MD MSc FRCPC DABIM, Acting Palliative Care
Medical Director, WRHA Palliative Care, Winnipeg, MB
Chris Emery RN MSN CON(c) CNS, Hospice Palliative Care, Fraser
Health, New Westminster, BC
Robin Fainsinger(2) MD, Clinical Director, Capital Health, Regional
Palliative Care Program, Capital Health, Edmonton, AB
Romayne Gallagher MD CCFP, Head, Division of Residential Care
and Operations Leader, Providence Health Care, Vancouver, BC
Darlene Grantham MN CHPCN(C), Clinical Nurse Specialist, WRHA
Palliative Care, Winnipeg, MB
Debbie Gravelle RN BScN MHS(c), Advance Practice Nurse, SCO
Health Service, Ottawa, ON
Margaret Harris BA RN CHPCN(C), Palliative Care Unit, SCO Health
Service, Ottawa, ON
Georgena Haubrich RN, Palliative Home Care, Saskatoon Health
Region, Saskatoon, SK
Lori A. Ives-Baine RN BScN, Palliative and Bereavement
Coordinator, Neonatal Intensive Care Sick Children, Toronto, ON
Shelley Jolly BA RN BSN, Clinical Coordinator Palliative Care,
Saskatoon City Hospital and Long Term Care, Saskatoon, SK
Connie Lachapelle, Manager, Spiritual Care, St. Paul’s Hospital,
Saskatoon, SK
Barb Linkewich RN HBScN IBCLC CHPCN(C), Program Manager,
Northwestern Ontario Pain and Symptom Management Team,
Thunder Bay, ON
Addie Loomes RN BScN, Clinical Coordinator, Palliative Home Care,
Saskatoon Health Region, Saskatoon, SK
Joan Mac Donald RN BScN MEd, National Practice Consultant,
Client Services, VON Canada, Montreal, QC
Rev. Michael Marshall, Anglican Chaplain, Hospital for Sick Children,
Toronto, ON
Mark Miller PhD, Ethicist, St. Paul’s Hospital, Saskatoon, SK
Fred Nelson MSW RSW, Director of Social Work, WRHA Palliative
Care Subprogram, Winnipeg, MN
Christine Newman MD FRCPC, Staff Neonatologist, Palliative Care
Physician, Hospital for Sick Children, Toronto, ON
Daphne Powell RN BScN, Nurse Coordinator, Palliative Care, St.
Paul’s Hospital, Saskatoon, SK
vi
Ann-Marie Primeau RN, Bereavement Coordinator, Manager
Nursing and Health Service Coordinator, Hospice, VON, Halton
Branch, Oakville, ON
Maria Pruett RN CHPCN (c), Palliative Care Unit, SCO Health
Service, Ottawa, ON
Shannon Pyziak RN BN CHPCN(C), Regional Palliative Care
Coordinator, Interlake Regional HA, Fisher Branch, MB
Janet Ursel RN BScN, Palliative Home Care, Saskatoon Health
Region, Saskatoon, SK
Linda Read Paul(3) RN MN CHPCN(C) CNS, Palliative and Hospice
Care Service, Calgary Health Region, Calgary, AB
Maria Rugg RN MN ACNP CHPCN(C), Palliative and Bereavement
Care Program, Hospital for Sick Children, Toronto, On
Myrna Sawatzky RN BSN, Clinical Coordinator, Palliative Care,
Royal University Hospital, Saskatoon, SK
Lisa Savage-Larose RN CHPCN (c), Palliative Care Unit, SCO Health
Service, Ottawa, ON
Connie Sessa RN MN (c), Advanced Practice Nurse Student,
Hospital for Sick Children, Toronto, ON
Judy Simpson RN BN MEd CHPCN(C), Palliative and Supportive
Care Coordinator, Cancer Care Nova Scotia, Halifax, NS
Ken Stakiw MD CCFP FCFP, Medical Director, Palliative Service,
Saskatoon Health Region, Saskatoon, SK
Simone Stenekes RN MN CHPCN(C), Clinical Nurse Specialist,
Pediatric Palliative Care Service, Halifax, NS
Jackie Theriault RN CHPCN(C), Palliative Care Unit, SCO Health
Service, Ottawa, ON
Gregg Trueman NP PhD MN CHPCN(C), Nurse Practitioner,
Faculty, Mount Royal University, Calgary, AB
Cindy VanHalderen RSW MSW, Social Worker, Hospital for Sick
Children, Toronto, ON
Meredith Wild RN MN, Manager, Palliative Care Services,
Saskatoon Health Region, Saskatoon, SK
Brian Zimmer, Director of Mission, St. Paul’s Hospital, Saskatoon,
SK
vii
Production Support and National Review Coordination,
Third Edition (Pallium Project, Phase II)
Project Oversight Michael Aherne MEd CMC
Project Coordination Jacquie Peden RN MN
Research Assistance Crystal Beaumont BSc
Publishing Advice and Pre-press Louise Ziola BA, some production!
Contributors Second Edition
Beth Perry RN PhD, Editor, Associate Professor, Athabasca
University, Edmonton, AB
Susan Campbell RN BScN, Nurse Consultant, Capital Health,
Regional Palliative Care Program, Capital Health, Edmonton, AB
Trish Clark RN MN CON(c) CNS, Palliative Care,
Tom Baker Cancer Centre, Calgary, AB
Janice Chobanuk RN BScN CON(c), Former Nurse Manager 9Y
Edmonton General Continuing Care Centre, Edmonton, AB
Gary Frank RN BEd CON(c), Nurse Consultant, Capital Health,
Regional Palliative Care Program, Capital Health, Edmonton, AB
Dennie Hycha RN MN, Former Palliative Care Program Coordinator.
David Thompson Health Region, Red Deer AB
Sharon Hunter RN BScN, Nurse Consultant, Capital Health,
Regional Palliative Care Program, Capital Health, Edmonton, AB
Kate Squires RN BScN, Clinical Educator Unit 43,
Grey Nuns Hospital, Edmonton, AB
Contributors First Edition
Eduardo Bruera MD, Former Clinical Director, Capital Health,
Regional Palliative Care Program, Capital Health, Edmonton, AB
Patsy Cantwell RN BScN, Former Nurse Consultant, Capital Health,
Regional Palliative Care Program, Capital Health, Edmonton, AB
Susan MacKay RN BScN, Former Nurse Consultant, Capital Health,
Regional Palliative Care Program, Capital Health, Edmonton, AB
Sandy McKinnon RN MN Former Manager Unit 43 Grey Nuns
Hospital, Edmonton, AB
Sally Turco RN CON(c), Former Nurse Consultant, Capital Health,
Regional Palliative Care Program, Capital Health, Edmonton, AB
Note: Some of these individuals contributed to all three editions of
this handbook, indicated by a (3) and some have contributed to two
editions, indicated by a (2).
viii
Introduction
Who Will Use This Handbook?
This handbook was written to enhance the professional caregiver’s
capacity and confidence in offering Hospice Palliative Care (HPC).
Professional caregivers work in a variety of settings, including
urban, rural, home, hospital, hospice, and residential or continuing
care. They play a key role in addressing physical, psychosocial, and
spiritual needs, providing practical support, coordinating services,
and accessing palliative care specialists for more complex situations.
Many of these professional caregivers may have limited education
and skills in HPC. Furthermore, the opportunity to provide palliative
services in a primary-care practice can be sporadic, making it
difficult to maintain a high-level of clinical practice, especially in
the absence of reminder tools, bed-side decision supports, and
resources.
What is Hospice Palliative Care?
The Canadian Hospice Palliative Care Association (2013) defines
hospice palliative care as whole-person health care that aims to
relieve suffering and improve the quality of living and dying.
Hospice palliative care strives to help individuals and their
families:
• Address physical, psychological, social, spiritual and practical
issues and associated expectations, needs, hopes and fears,
• Prepare for, and manage, self-determined life closure and the
dying process, and
• Cope with loss and grief during the illness and bereavement.
Hospice palliative care aims to:
• Treat all active issues.
• Prevent new issues from occurring.
• Promote opportunities for meaningful and valuable experiences,
personal and spiritual growth, and self-actualization.
Hospice palliative care is appropriate for any patient and/or family
living with, or at risk of developing, a life-threatening illness due
to any diagnosis, with any prognosis, regardless of age, and at any
time they have unmet expectations and/or needs, and are prepared
ix
to accept care. HPC may complement and enhance diseasemodifying therapy or it may become the total focus of care.
Hospice palliative care is most effectively delivered by
an interdisciplinary team of healthcare providers who are
knowledgeable and skilled in all aspects of the caring process
related to their discipline of practice. These providers are
typically trained by schools or organizations that are governed by
educational standards. Once licensed, providers are accountable to
standards of professional conduct that are set by licensing bodies
and/or professional associations.
The World Health Organization (2013) defines hospice palliative
care as an approach that improves the quality of life of patients and
their families facing the problem associated with life-threatening
illness, through the prevention and relief of suffering by means of
early identification and impeccable assessment and treatment of
pain and other problems, physical, psychosocial and spiritual.
Hospice Palliative Care:
• Provides relief from pain and other distressing symptoms.
• Affirms life and regards dying as a normal process.
• Intends neither to hasten or postpone death.
• Integrates the psychological and spiritual aspects of patient care.
• Offers a support system to help patients live as actively as
possible until death.
• Offers a support system to help the family cope during the
patient’s illness and in their own bereavement.
• Uses a team approach to address the needs of patients and their
families, including bereavement counseling, if indicated.
• Will enhance quality of life, and may also positively influence
the course of illness.
• Is applicable early in the course of illness, in conjunction
with other therapies that are intended to prolong life, such
as chemotherapy or radiation therapy, and includes those
investigations needed to better understand and manage
distressing clinical complications.
(Ferris et al., 2002, p. 17-18)
x
Hospice Palliative Care: Canadian Hospice Palliative Care
Association (CHPCA) Model
Illness trajectory
• More predictable in cancer and ALS
• Less predictable in AIDS, lung & heart diseases
End of Life Care
Terminal Phase
Therapy to cure or
control disease
Palliative Care Approach
Diagnosis
made of
life-limiting
illness
Bereavement Care
Death
Illness Trajectory
Pereira, J.L. & Associates. (2008). Reprinted with permission.
This diagram illustrates how the illness trajectory may be more
predictable in some illnesses (e.g. advanced cancer) than in others
(AIDS, end-stage heart, or end-stage lung disease). These unpredictable
trajectories are often characterized by gradual deterioration combined
with acute crises or episodes during which the individual appears to be
in the terminal phase, only to rebound again. There is risk in assuming
that an acute episode is a terminal event.
How Was the Handbook Developed?
This 4th national edition was published in 2013 by the Edmonton Zone
Palliative Care Program, Alberta Health Services, following a review
by hospice palliative care (HPC) professionals from across Canada.
Heavily revised in 2006 by experienced HPC clinicians from across
Canada, the 3rd edition was published by the former Capital Health’s
Regional Palliative Care Program in collaboration with The Pallium
Project and the Canadian Hospice Palliative Care Association (CHPCA).
The book is part of a joint commitment to ensure HPC is current and
well-integrated within Canada’s primary health care renewal efforts.
A national review was undertaken to ensure the handbook continued
to reflect the diversity of safe, ethical, and effective HPC practices
across Canada. Experienced HPC practitioners from various primary,
secondary and tertiary practice settings across Canada reviewed
the 3rd edition, through a structured review process to validate
the appropriateness and evidence of existing questions, identify
xi
additional questions, and identify additional or new evidencebased interventions or practices. Questions and appendices with
similiar themes were organized into 11 groups of 5-10 questions.
Each group of questions was assigned to 2 or 3 reviewers from
different provinces. Revisions were made to the handbook based
on suggestions from the national review process. Subsequently,
an editorial committee reviewed and integrated the revisions into
the handbook while considering the national commitment to align
practices with the principles and norms outlined in the CHPCA
Model to Guide Hospice Palliative Care and the Canadian HPC
Nursing Standards of Practice.
The Canadian Hospice Palliative Care Nursing Standards of Practice
define the standard of nursing care expected by all those who are
living with, and dying from an advanced illness; establish requisite
knowledge for the nursing care of persons and families with
advanced illness; and support on-going development of hospice
palliative care nursing. The 2009 Canadian HPC nursing standards,
aligned with the Ferris et al. (2002) CHPCA Model to Guide Hospice
Palliative Care, are: 1) Quality of Living-Dying, 2) Comfort, 3)
Transitions, 4) Quality and Safety, 5) Leadership, and 6) Personal
and Professional Growth.
What is the Scope of the Handbook?
The handbook is intended as a “field guide” for the general practice
nurse and not as a textbook on palliative care nursing. It can be
read from cover to cover or it may be used as a resource to answer
a particular question. The handbook has limited the explanations
for each question in order to keep it compact and “user friendly.”
Key references are included following each topic for readers who
are seeking more complete knowledge of a specific subject. A list of
books that have a general focus as well as pertinent web sites can
be found at the end of the handbook. Some information has been
organized under the headings of Nursing Alert or Clinical Tip.
Nursing Alert
Information found under the heading Nursing Alert is
extremely important and needs to be considered prior to
providing care.
xii
Clinical Tip
Information found under the heading Clinical Tip assists
with the implementation of care.
The handbook contains guidelines and general suggestions for
treatment and care that must be individualized to the specific
person and family. Suggested drugs and drug doses have been
reviewed by hospice palliative care physicians and pharmacists.
Information is provided about the maximum daily dose for the
drugs that have a definite maximum dose. However, drugs such
as opioids do not have a specific maximum dose and should be
titrated to best analgesia with the fewest side effects. The drugs
and drug doses were included in this handbook to assist nurses
when consulting with the primary-care or attending physician about
symptom management.
When possible, the interventions in this handbook are evidencebased, but at times, the interventions are based on best practice
standards or protocols. Since some nursing practices vary
between provinces and even sites, some of the interventions are
only suggestions and it is recommended that a nurse follows the
standard or protocol provided by the place of practice.
The suggestions for care in this handbook can often be applied to
people who are facing life-limiting illnesses other than cancer. The
intention of this handbook is to serve as a resource for all nurses
who provide palliative care regardless of diagnosis or practice
setting. Content, particularly discussion of possible pharmacological
interventions, is specific to an adult population, and if caring for a
child, it is important to consult a pediatric specialist.
Disclaimer
Care has been taken in the preparation of the information
provided. Nonetheless, any person seeking to apply or consult
these guidelines is expected to use independent clinical judgment
in the context of individual clinical circumstances, or seek out the
supervision of a qualified clinician. Alberta Health Services and the
parties for whom it is legally responsible, makes no representations
or warranties about the accuracy, reliability, completeness,
currency, or timeliness of this document and specifically disclaims
any such representations and warranties.
xiii
This handbook is not a substitute for, and does not provide
medical advice. The material contained herein is for educational
and informational purposes only, and is not to be used for the
direction of care of individual patients. It is general in nature and is
not intended in any way to be a substitute for medical examination
or professional medical or nursing advice, diagnosis or treatment.
Always seek the advice of appropriately qualified and regulated
health care providers with any questions you may have with regard
to a specific medical condition that transcends your specific scope
of regulated practice or professional competence. Never disregard
or delay seeking consultative advice because of something you have
read or viewed in the course of using this handbook.
Medication Conventions
For ease of reference, the convention which has been used
throughout is to list the generic name of medications and give, as
examples, common brand names used in Canada. You are advised to
always verify the items discussed in this book against your approved
local formulary.
Funding Acknowledgement
The Edmonton Zone Palliative Care Program, Alberta Health
Services, provided the funding to publish the previous editions of the
Handbook and recoups this cost from sales of the Handbook. In-kind
support for this project was provided by the employers of the editors
and reviewers.
References
Canadian Hospice Palliative Care Association (2013) What is hospice
palliative care? Retrieved from http://www.chpca.net/Home
CHPCA Nursing Standards Committee (2009). Canadian Hospice
Palliative Care Nursing Standards of Practice. Ottawa, ON:
Canadian Hospice Palliative Care Association. Retrieved from
www.chpca.net
Ferris, F.D., Balfour, H.M., Bowen, K., Farley, J., Hardwick, M.,
Lamontagne, C., Lundy, M., Syme, A., & West, P. (2002). A model
to guide hospice palliative care. Ottawa, ON: Canadian Hospice
Palliative Care Association. Retrieved from www.chpca.net
Pereira, J.L. & Associates. (2008). The Pallium palliative pocketbook:
a peer-reviewed referenced resource. 1st Cdn. ed., Edmonton,
Canada. The Pallium Project.
World Health Organization. (2013). WHO Definition of Palliative Care.
Retrieved from www.who.int/cancer/palliative/definition/en/
xiv
Contents
The Authors................................................................................. iii
Introduction................................................................................ ix
Part I. Physical Symptoms............................................... 1
Pain............................................................................................... 2
1. What is pain? How is pain assessed?..................................2
2. What are the different causes and types of pain? ...........7
3. Why is a history of substance use relevant to pain
assessment and management? How is it assessed?.........9
4. How is pain assessed in someone who is confused?.....10
5. Which opioids are preferred for use?...............................11
6. How should opioids be ordered?......................................14
7. What is breakthrough pain? How should
breakthrough opioids be ordered? ..................................15
8. What is the maximum dose of an opioid?.......................16
9. What are the preferred routes for administration
of opioids?............................................................................ 17
10. What are the potential side effects of an opioid?...........18
11. What is opioid neurotoxicity?............................................19
12. What are the interventions for opioid neurotoxicity?....21
13. How can excessive drowsiness with opioid use be
decreased?............................................................................22
14. How are opioids used safely in persons with renal
impairment?.........................................................................22
15. What are the causes of myoclonus?.................................23
16. Does unrelieved pain always require increasing
the opioid dose? .................................................................23
17. Should opioids ever be withheld? ....................................24
18. Should placebos ever be administered?..........................25
19. What other medications are used in the
management of pain?.........................................................25
20. What are the non-pharmacological interventions
to control pain?....................................................................27
21. How can fears regarding addiction be managed?..........28
22. How is pain managed in persons with an addiction
history?..................................................................................29
xv
23. What can be done when family members give or
request opioids inappropriately? .....................................30
Anorexia and Cachexia............................................................. 33
24. What is cancer associated anorexia/cachexia syndrome
(CACS)? What are the causes? .........................................33
25. How can appetite and oral intake be optimized?...........34
26. What can be done to assist persons and their
families cope with reduced nutritional intake? ..............36
27. Is nutritional support beneficial?.......................................38
Constipation, Diarrhea and
Bowel Obstruction............................................................... 41
28. What is constipation? How is it assessed? ......................41
29 What causes constipation? ................................................42
30. What are the complications of constipation?..................43
31. What are the interventions for constipation? .................44
32. How is diarrhea assessed?
What are the causes?..........................................................47
33. What are the interventions for diarrhea?.........................48
34. What is bowel obstruction?
What are the causes? .........................................................49
35. What are the signs and symptoms of bowel
obstruction? How is it assessed?.......................................50
36. What are the interventions for bowel obstruction?........51
Dehydration............................................................................... 55
37. What is dehydration?
How is dehydration assessed? ..........................................55
38. When is it beneficial to hydrate?.......................................55
39. When is it not beneficial to hydrate?................................56
40. Is hydration appropriate for a person who has
edema?.................................................................................57
41. How can hydration be maintained?.................................57
Nausea and Vomiting................................................................ 59
42. What are nausea and vomiting?
What are the causes?..........................................................59
43. How are nausea and vomiting assessed?........................60
44. What are the interventions to control nausea and
vomiting?..............................................................................61
xvi
Delirium...................................................................................... 65
45. What is delirium? What are the causes of delirium? .....65
46. How is delirium assessed? ................................................67
47. What are the interventions for delirium?.........................68
48. What are the interventions for supporting family
when a person is delirious? ..............................................69
Dyspnea.......................................................................................71
49. What is dyspnea?
What are the causes of dyspnea?.....................................71
50. How is dyspnea assessed?.................................................72
51. What are the interventions for dyspnea? ........................74
Edema, Ascites, and Lymphedema........................................... 77
52. What are edema, ascites, and lymphedema?
What are the causes? .........................................................77
53. How are edema, ascites, and lymphedema
assessed? .............................................................................78
54. What are the interventions for edema, ascites, and
lymphedema?......................................................................79
Care of the Integument ............................................................ 82
55. Should bed-bound people be repositioned
regularly?..............................................................................82
56. What is pruritis? What causes it? ......................................83
57. How is pruritis assessed?
What are the interventions?...............................................84
58. What is a malignant wound?
How is it assessed? .............................................................85
59. What are the interventions for a malignant wound?.....86
Oral Conditions.......................................................................... 88
60. What contributes to taste changes?
What are the dietary interventions?.................................88
61. What are xerostomia (dry mouth) and stomatitis
(sore mouth)? What are the causes? ...............................88
62. How are xerostomia and stomatitis assessed? What are
the interventions?................................................................89
xvii
Fatigue........................................................................................ 92
63. What is fatigue? What are the causes?.............................92
64 How is fatigue assessed?
What are the interventions?...............................................92
Circulatory Conditions.............................................................. 94
65. What are the causes of hemorrhage? .............................94
66. What are the interventions for hemorrhage?..................95
67. What are thrombi and emboli?
What are the causes? .........................................................97
68. How are thrombi and emboli assessed? What
are the interventions?.........................................................97
Spinal Cord Compression......................................................... 99
69. What is spinal cord compression?
What are the causes? How is it assessed? ......................99
70. What are the interventions for spinal cord
compression? ...................................................................100
Superior Vena Cava Syndrome................................................101
71. What is superior vena cava syndrome?
What are the causes? How is it assessed? ....................101
72. What are the interventions for superior
vena cava syndrome?.......................................................102
Seizures ................................................................................... 103
73. What are seizures? What are the causes?
How are seizures assessed? ............................................103
74. What are the interventions for seizures?.......................104
Alternative and Complementary Therapies.......................... 105
75. What are alternative and complementary
therapies? What are the nursing responsibilities? .........105
Palliative Sedation....................................................................107
76. What is palliative sedation? What needs to be
considered? ......................................................................107
xviii
Part II. Psychosocial, Spiritual, Ethical, and
Legal Issues....................................................................111
Family and Coping....................................................................112
77. What is helpful to know about the person’s family? ...112
78. What is coping? What are coping strategies? ..............113
79. Which persons may be at risk for coping poorly?........114
80. How can support be offered to family members?........114
81. How is loss of control expressed by persons and
their families? How can they be assisted to
maintain a sense of control?............................................116
Psychosocial..............................................................................117
82. What is anxiety? How does the person express
anxiety? What are the interventions?............................. 117
83. How is depression expressed?
What are the interventions?.............................................118
84. What interventions are used when dealing with
anger?.................................................................................119
85. What are the interventions for supporting the
person who is crying? ......................................................120
86. How is denial expressed?
What are the interventions?.............................................120
87. What is a child’s understanding of death? .................... 121
88. How can children be prepared?......................................122
Spirituality and Hope.............................................................. 124
89. What are spirituality and religion? How are
spirituality and religion assessed? .................................124
90. What interventions support the person’s spirituality
and religion?......................................................................126
91. What is hope? How is it assessed?
What are the interventions?.............................................127
Culture...................................................................................... 129
92. What is cultural competence?
How is it applied to practice? ..........................................129
93. How does culture influence the dying process?........... 131
xix
Euthanasia and Suicide........................................................... 132
94. What are euthanasia and assisted suicide? What
are the nursing responsibilities?......................................132
95. What are the risk factors for suicide?
What are the interventions? ............................................133
Goals of Care........................................................................... 134
96. What influences Goals of Care and Advanced Care
Planning? ..........................................................................134
97. How are goals of care discussed? ..................................135
Organ and Tissue Donation.................................................... 136
98. Can an individual with terminal illness, advanced
disease, or cancer donate? Is an open-casket
funeral possible after organ and tissue donation?.......136
99. What is the health care professional’s role in
organ and tissue donation?.............................................137
Last Days ................................................................................. 137
100. How can nurses prepare families for the last
days of life?........................................................................137
101. What are the indicators of imminent death? ................138
102. What are the interventions in the last days of life?......139
Grief and Bereavement........................................................... 140
103. What is grief?
What are the immediate interventions?.........................140
104. What are some interventions for bereavement
follow-up? ..........................................................................141
Care for the Caregiver............................................................. 142
105. What strategies can a nurse take to reduce
his or her stress?................................................................142
106. What might be warning signs of inappropriate
boundaries? .......................................................................144
General References...................................................... 145
Appendix A. ESAS-r................................................................. 148
Appendix B. Faces Pain Scale – revised ............................... 152
Appendix C. CAGE Questionnaire.......................................... 154
Appendix D. Table of Equianalgesic Doses of Opioids ....... 157
Appendix E. Strategies for Energy Conservation ................. 159
xx
Part I
Physical Symptoms
1
Pain
1. What is pain? How is pain assessed?
Pain is a subjective, multidimensional experience. Each person’s
experience of pain is unique. The perception, expression and
relief of pain are influenced by physical, psychological, social,
cultural and spiritual factors. Conversely, the experience of
pain will influence how a person functions within each of these
dimensions. Therefore, a complete pain assessment and treatment
plan must also be multidimensional. It is important to consider an
interdisciplinary approach to pain assessment and management.
Clinical Tip
A systematic approach to questions for assessment and the
use of tools such as the ESAS-r (Edmonton Symptom Assessment
System–revised, see Appendix A) or Faces Pain Scale (see
Appendix B) will facilitate communication and consistency in pain
assessment. The following is just one example of a systematic
approach to a pain assessment.
Components of a Multidimensional Pain Assessment
I. Identify pain characteristics through use of questions and
physical exam. The acronym PQRSTU may facilitate a thorough,
systematic assessment:
P: Palliating and Provoking Factors
• What makes the pain better or worse?
• What brings on the pain?
• Include physical exam to determine if pain produced or
altered with palpation, movement or positioning (e.g.
psychological, social, spiritual, environmental and/or cultural
factors).
• Include a multi-dimensional focus e.g. psychological, social,
spiritual, environmental and/or cultural factors that make the
pain better or worse e.g. pain worse at night when alone.
2
• Include medication and treatment history:
– What medications are currently being taken for pain
relief?
– Was the medication used as prescribed?
– What medications and treatments have been used in
the past?
– What other treatments are being/have been used for
pain relief?
– How effective have these medications and treatments
been?
Q – Quality
• What does the pain feel like? (e.g. aching, stabbing,
burning, numbness, tingling).
• What would you have to do to me to make me feel the pain
you are feeling?
R – Radiating Pain
• Does the pain move or travel anywhere?
S – Site
• Show me where you hurt.
• Include a physical exam to help identify specific pain
location.
Clinical Tip
Asking a person to show you, rather than tell you, where
it hurts can reveal whether the pain is localized or diffuse,
stationary or moving. This information can provide important
clues as to the etiology of the pain that might be missed with a
simple verbal response. Use a body diagram and have the person
identify the location of each pain with either a letter or a number
(See Appendix A). When people have more than one pain, it is
important to conduct a comprehensive assessment of each pain
separately, as well as the relationship between the different pains.
3
S – Severity
• How much does it hurt?
Clinical Tip
Visual analogue scales (VAS), numerical scales (0-10),
verbal rating scales or face scales can be used to provide
valid measures of pain severity or intensity (See Appendix A and B).
– Symptoms
• Are there any symptoms that accompany the pain?
(e.g. nausea, sweating)
T – Timing
• Onset: When did the pain start?
• Duration: How long does the pain last?
• Frequency: How often do you feel the pain? When are you in
pain? Is the pain there all the time or does it come and go?
– Tolerance
• What amount of pain can you tolerate/live with? (use 0-10
scale) (See Appendix A)
U – Impact on you
• How has the pain affected your ability to function?
• What do you believe is causing the pain?
II. Further explore non-physical dimensions to see how these
factors may influence and be influenced by the pain experience:
Behavioural
• What behaviours does the person exhibit when in pain?
(e.g. rocking, pacing, guarding or withdrawing)
• How does the person express pain?
• Are there behaviours or actions that make the pain worse?
4
Clinical Tip
Chronic pain may exist without any overt behavioural
expression of pain. The reliance on visual inspection can
lead to an underestimation of pain severity and possible poor pain
control.
Psychological
• How does the person’s mood affect the pain?
• How does the pain affect the mood?
• Does the person feel angry, depressed and afraid or a
combination of these?
• How has the pain experience impacted the person’s self-image
or self-esteem?
• Is the person cognitively impaired or delirious? Use screening
tools such as the Molloy Standardized Mini-Mental State
Examination (SMMSE) or the Confusion Assessment Method
(CAM).
• Is the person experiencing major psychological distress? Look
for total pain (See Question 2).
• How has the person coped with pain and other stressors in the
past?
• Does the person have a history of drug or alcohol use? (See
Appendix C)
Social
•
•
•
•
How does the pain influence the person’s daily living?
How effective is the person’s social support network?
What effect does significant others have on pain?
How has the pain influenced the person’s relationships and
roles at home and/or work?
• What effect has the pain had on sexuality?
• Are there financial concerns?
Cultural
• What are the cultural traditions, customs, beliefs and values that
influence the expression, meaning and treatment of pain?
5
Spiritual
• What is the meaning of pain to the person?
• What does the person think is causing the pain?
• How has the pain influenced the person’s hope, meaning and
purpose in life?
• Are there other spiritual issues affecting the pain experience?
Environmental
• How does the environment affect the person’s pain (e.g. loud
noises, bright lights)?
• What environmental conditions increase or decrease the person’s
pain?
When to Assess Pain
•
•
•
•
On initial contact and at regular intervals,
After report of a new pain,
After change in existing pain,
To evaluate pain interventions.
Assess the intensity and impact of the person’s pain before
the intervention and after the intervention has had sufficient
time to take effect, noting any improvement (e.g. for most pain
medications, effectiveness should be evaluated 20-30 minutes after
administration). Similarly, assess pain within 24 hours of starting
a new medication or new dose, to determine whether there is a
sustainable effect.
Nursing Alert
Escalating back pain that radiates and increases with straight
leg raise or banded pain around chest or torso may indicate
spinal cord compression. It is important to perform a neurological
assessment, including bladder and bowel function, as impairment
in these may also indicate spinal cord compression (see Questions
69 and 70). Report immediately and take action so that permanent,
irreversible damage from the compression can be minimized.
6
2. What are the different causes and types of
pain?
Almost all persons with a life-limiting illness will have several
different factors contributing to their pain experience. In a person
expressing a pain intensity of 8/10, the mechanism may be almost
completely physical. In another person with the same pain rating,
fear, depression or confusion may be responsible for the majority
of the pain expression and therefore, analgesics may not result
in improvement. It is important to assess the characteristics,
treatment history and impact of each pain separately, as well as
the relationship between the different pains. The pain experience
is rarely, if ever, purely spiritual or physical or the result of a single
factor in a single dimension.
Physical Pain Syndromes
I. Nociceptive Pain
Pain caused by on-going activation of pain fibres by a noxious
stimulus. Two sub-types:
a) Somatic Pain (e.g. bone metastases, muscle or soft tissue
damage). This is described as pain that is well-localized,
gnawing, dull, boring, aching or occasionally cramping. It
may be constant or intermittent. Pressing over the affected
area elicits pain or makes it worse. It is also usually worse
with movement.
b) Visceral Pain (e.g. liver metastases, GI infection). This is
described as a constant deep aching, squeezing or cramping
pain that is usually poorly localized or diffuse. It can be
referred (e.g. to sacral or perineal area). It is often associated
with autonomic symptoms including sweating and pallor.
II. Neuropathic Pain
This type of pain is caused by the destruction, infiltration or
compression of nerve tissue. Pain perception may continue in the
absence of persistent noxious stimulus. There are 2 sub-types often
differentiated by the characteristics used to describe them:
7
a) Dysesthetic or deafferent pain (e.g. peripheral vascular
disease, peripheral neuropathy). This is a constant pain that
occasionally radiates and is often characterized by heat,
burning, numbness or tingling over the area. Light pressure
from non-painful stimuli (e.g. clothing or light touch) can
produce severe pain.
b) Neuralgic pain (e.g. post-herpetic pain, sciatica). This is
described as paroxysms of lancinating pain that can be
sharp, shooting or electrical in nature that can follow nerve
roots or dermatomes.
Nociceptive and neuropathic pain may have different components
that reflect the timing of the pain experience.
• Baseline pain is described as a constant pain state experienced
for greater than half the day.
• Breakthrough pain is described as an intermittent flare of
pain that exceeds the intensity of the baseline pain and “breaks
through” the baseline analgesia.
• Incident pain (subtype of breakthrough pain) is described as
a severe transitory increase in pain of varying intensity that
occurs suddenly in response to a trigger, such as toileting,
repositioning, coughing, hiccups and/or dressing changes.
Total Pain
Refers to the multidimensional nature of pain, which includes the
physical, psychological, social, and spiritual domains. This pain
has a large psychosocial or spiritual component. Total pain is also
known as total suffering or existential pain. Persons experiencing
this type of pain often feel overwhelmed. They may not have the
ability or insight to accurately describe the complex characteristics
of their total pain experience and may perceive and/or express their
suffering as physical pain.
Consider total pain if:
• Sgnificant psychosocial or spiritual issues are identified,
• The person describes pain as all over, in absence of a physical
cause for this pain, and/or
• Escalating doses of analgesics produce toxicity with little or no
pain relief.
8
Nursing Alert
Involvement of the interdisciplinary team is essential in the
assessment and management of the total pain experience.
Psychosocial or spiritual interventions are often more effective than
analgesics in these complex situations.
3. Why is a history of substance use relevant to
pain assessment and management?
How is it assessed?
People with a history of substance use may:
• Require higher doses of opioids to control pain and/or
• Use opioids inappropriately as a means of coping with the
psychosocial or spiritual distress inherent in their illness
experience.
The following signs indicate the likelihood of substance use or
chemical coping:
• Rapidly escalating doses of opioids with little or no pain relief
and the development of toxicity (e.g. delirium, hallucinations,
myoclonus),
• Taking opioids for reasons other than pain control (e.g. to calm
nerves or to sleep),
• Losing prescriptions or medications,
• Seeking opioids from multiple providers,
• Failing to fulfill work, school or home obligations and/or
• Experiencing legal problems with substances.
Clinical Tip
A history of alcohol use may be assessed using the CAGE
Questionnaire (See Appendix C). A new version of the CAGE
called the CAGE AID has been modified to screen for both alcohol
and drug addiction; however, reliability and validity testing have
not yet been completed. The caregiver should be sensitive and
tactful when asking questions regarding the overuse of alcohol or
prescription and illegal drugs.
9
For those persons who are in recovery from a substance use
disorder/addiction, it may be challenging to get the person and/or
family’s to agree to use opioids for pain due to fear of potentially
developing another addiction. This would interfere with adherence
to pain management treatment and the ability to optimize pain
control.
Reassure the person that pain control is achievable despite
previous substance use through the development of an honest
and trusting relationship with the health care team. Support the
person’s efforts to participate in recovery efforts considering
functional ability and interest (See Questions 21 and 22).
4. How is pain assessed in someone who is
confused?
In someone who is cognitively impaired, such as a person with
dementia or delirium, it becomes even more challenging to assess
pain. It may be helpful to confer with primary caregivers and family
members to identify changes in behaviour. When assessing for pain
in such situations, look for the following changes:
• Vocalizations (e.g. crying or moaning).
• Facial expression (e.g. furrowed brow or grimacing).
• Body movements (e.g. tense body language, guarding
behaviour, rocking or pacing).
• Interpersonal interactions (e.g. aggression, resisting care or
withdrawing).
• Activity patterns or routines (e.g. changes in appetite, sleep or
increased wandering).
• Mental status (e.g. increasing confusion or irritability).
• Agitation or restlessness (e.g. crawling out of bed or picking at
the air).
Statements such as “Show me where it hurts” are helpful as the
ability to pinpoint the pain can be considered a confirmation of
pain, especially if pathology is known. However, describing pain as
“all over” or an inability to pinpoint the pain may mean the person
is expressing general distress or some other discomfort.
10
Clinical Tip
When unsure if a confused person is in pain, administer a
trial dose of pain medication. If the problem is physical pain,
the presumed pain behaviours should diminish. However, note that
the sedative effect of the pain medication can also relieve agitation
for a while. Inform the family of this possibility. If the person had
no pain or the pain control was good before the onset of confusion,
it is likely that the person’s agitation is not due to increased
pain. Administer a trial dose of a neuroleptic (e.g. Haloperidol)
and evaluate its effect. A decrease in agitated behaviours is an
indication that they are more likely a result of delirium than pain
(See Question 23).
Nursing Alert
Restlessness, agitation, moaning and/or grimacing can be
an expression of delirium and not necessarily indicative of
pain. Moaning may also be simply the sound of air moving through
relaxed or weakened muscles of the vocal cords as the person
breathes. Discuss this with family to alleviate their concerns.
5. Which opioids are preferred for use?
Codeine, Fentanyl, Hydromorphone, Methadone, Morphine,
Oxycodone, Sufentanil, and Tramadol are commonly used opioids.
Opioids may be classified into weak and strong. “Weak” opioids,
such as codeine and tramadol, have a ceiling effect, meaning that
there is a maximum dose above which there is no further increase
in analgesia. “Strong” opioids, such as morphine, hydromorphone,
and oxycodone, are not subject to a ceiling effect and have no
maximum dose.
The opioids mentioned above are short acting formulations and
are more appropriate for individuals who have not received opioids
before (are opioid naïve) and/or have pain that is unstable. Because
of their shorter half-life, short acting formulations allow for safer
and more rapid titration.
11
Nursing Alert
Some individuals lack the enzyme that converts Codeine to
Morphine; therefore, Codeine is ineffective for pain control
for these individuals.
Long acting opioids should be considered when pain control
is stable and minimal amounts of short-acting breakthrough
medication are required. Long acting opioids include: Codeine
Contin®, Hydromorph Contin®, Oxyneo, M Eslon®, and MS Contin®.
These analgesics are usually administered every 12 hours. Do not
administer more frequently than every 8 hours. Kadian® is a long
acting Morphine that is given once every 24 hours.
Methadone and Transdermal Fentanyl are opioids with a longer
duration of action. Their half-life varies from one person to another
as they are fat soluble.
Methadone has to be titrated carefully under the guidance of
a palliative care physician or pain specialist who is licensed to
prescribe this medication. Methadone’s variability may result in an
accumulation which is potentially toxic, even lethal. Methadone acts
on the NMDA receptor and is used for the treatment of neuropathic
and/or severe pain refractory to other opioids.
Nursing Alert
Long acting oral analgesics CANNOT be crushed or altered
and MUST be swallowed intact. One exception is M Eslon® which
is a capsule that can be opened and the contents sprinkled on soft
food. Swallow the soft food (like pudding, yogurt, and applesauce)
without chewing.
Fentanyl is very short acting in one form (injectable/buccal) and
very long acting in another form (transdermal). It is not a good
choice for regular 4 hour or prn dosing.
The transdermal Fentanyl patch is a long-acting controlled-release
opioid preparation that offers a convenient, non-invasive method
of delivering analgesia medication slowly into the bloodstream
through the skin.
Transdermal Fentanyl patches are indicated for persons who:
• Are opioid tolerant for the management of chronic, persistent,
12
moderate to severe pain that requires continuous, around the
clock opioid administration.
• Are already receiving opioid therapy at a total daily dose of at
least 45 mg of an oral Morphine equivalent per day.
Transdermal Fentanyl is contraindicated in persons:
• With acute, unstable or postoperative pain, as the dosage
cannot be adjusted quickly.
• With mild, intermittent or short duration pain.
• Who are opioid-naïve.
Over a period of 12 – 24 hours following application of a
transdermal Fentanyl patch, a deposit of medication begins to
accumulate in the intradermal layer of the skin. When initiating a
Fentanyl patch, overlap it with the existing opioid for the first 12
hours. Medication will continue to be delivered via the intradermal
reservoir 12–24 hours following patch removal.
Transdermal Fentanyl products must be used with caution in
elderly, cachectic or debilitated persons. Persons should be
cautioned to avoid exposure to external heat sources when using a
transdermal Fentanyl product.
When selecting the site for application, choose a flat surface such
as the upper chest, back, flank, upper arm or thigh where skin
movement is limited. Select a new site different from the previous
location to minimize changes in blood levels due to build-ups of
subcutaneous deposits and skin discomfort. Do not apply the patch
to broken, irritated or scarred skin, or to areas that have received
treatment with radiation as this can affect drug absorption. Do not
cut or damage the patch before applying. Wear gloves to
prevent your hands from absorbing medication.
Nursing Alert
Merperidine (Demerol) should not be used for the following
reasons:
• It rapidly accumulates, potentially causing delirium and/or
seizures,
• Its duration of action is only 2 to 3 hours, necessitating more
frequent administration and
• Its active metabolites are more neurotoxic than the metabolites
of other opioids.
13
6. How should opioids be ordered?
Opioids may be ordered as needed (PRN) in situations where the
pain is not severe or constant. Opioids for moderate to severe,
constant pain (baseline) should be given on a fixed schedule
around the clock (ATC). For people requiring ATC dosing, there
should also be a provision for PRN opioids for breakthrough pain
(See Question 7).
A useful guideline is the “three rules of three”:
1. Greater than 3 PRN doses/24h – assess need for ATC
administration.
2. Greater than 3 BTA (Breakthrough Analgesia)/24h – may
need to increase ATC baseline dose.
3. Greater than 3 BTA in a row with little effect – immediate
reassessment needed, contact a physician.
When initiating ATC dosing, start with immediate release (shortacting) formulations to make dosage titration safe and effective.
Avoid the use of a long acting opioid until the person’s opioid
requirements are established.
Nursing Alert
The above rules do not apply to people with severe renal
failure (See Question 14).
If the person is requiring ATC opioids for adequate pain control,
it is important to awaken the person for every scheduled dose
to maintain a therapeutic level of analgesia in the bloodstream.
However, if the person feels it is very important to have an
uninterrupted night’s sleep, he or she may try any of the following,
with a physician’s order.
• Double the ATC short acting bedtime dose and omit the duringthe-night dose; then resume with the regular early morning
dose.
• Omit the during-the-night dose and resume with the regular
early morning dose.
• Take either the ATC short acting or breakthrough dose whenever
he or she wakes up during the night.
14
Remember: Most people only need to use ATC short acting opioids
for a short time period. Once the pain management is stable and
no dosage change has been needed for at least 4-7 days, the opioid
can be switched to a long acting preparation, eliminating the need
to wake up during the night for regular dosages.
7. What is breakthrough pain?
How should breakthrough opioids be ordered?
Breakthrough pain is a flare of pain that exceeds the intensity of
the baseline pain and “breaks through” the analgesia provided by
ATC analgesics. Breakthrough analgesia (BTA) is medication used to
relieve this type of pain. In general:
• BTA should be the same opioid as the ATC (an exception is
Transdermal Fentanyl).
• BTA is ordered at 10%-15% of the person’s total 24 hour dose,
every hour as needed, or 50% of a single ATC dose every hour
as needed when a short acting opioid is being used.
• BTA should be given when needed regardless of when the next
regular dose is due.
Incident pain is a distinct type of breakthrough pain. It is pain
that directly results from an action or activity. Incident pain can
be experienced by persons with bone metastases, rib fractures
or myofascial involvement of a tumour. Circumstances in which
incident pain can occur include repositioning, bathing or changing
clothes, transfers, wound management, catheterization or
disimpaction, and ambulation.
Management of incident pain requires the use of a short-acting
opioid, which can be administered by oral, subcutaneous,
sublingual, or bucal routes. The oral route may take up to 30
minutes to reach effect. The other routes result in quicker analgesia.
Fentanyl or Sufentanil can be administered sublingually 10-15
minutes prior to the activity. These injectable formulations are
administered via the transmucosal route due to rapid absorption
through the mucous membranes. The onset of action is about 5-6
minutes and the duration of analgesia 20-30 minutes. Use caution
with Fentanyl and Sufentanil preparations as they are extremely
potent opioids. Fentanyl is approximately 100 times more potent
than Morphine and Sufentanil is 1000 times more potent than
Morphine.
15
Nursing Alert
Timing of the ATC analgesic dose should never be changed
due to administration of a BTA (e.g. if BTA was administered
at 1330 and the next ATC dose is due at 1400), the ATC dose
remains due at 1400.
8. What is the maximum dose of an opioid?
“Weak” opioids (e.g. codeine and tramadol) have a ceiling dose,
which means the analgesic effect of the drug does not continue as
the dose is increased. Other drugs, such Tylenol # 3®, Percocet®,
and Percodan® have a maximum dose due to the addition of
acetaminophen and acetylsalicylic acid, which have a daily dose
limit. “Strong” opioids such as Morphine, Hydromorphone,
Oxycodone, Fentanyl, and Methadone are not subject to a ceiling
effect and have no maximum dose.
Treatment with opioids involves a balance between sufficient
analgesia and the typical side effects (see Question 10). Side
effects such as sedation and nausea diminish over time because of
tolerance. Constipation may be prophylactically treated with good
results. Opioid toxicity causing delirium can be easily missed. A
comprehensive assessment and ongoing reassessment of cognitive
function is therefore important (see Questions 45–48).
Nursing Alert
If opioids are started at low doses and increased slowly,
there is less risk of respiratory depression and delirium.
16
9. What are the preferred routes for
administration of opioids?
The oral route is the preferred route for the following reasons:
• It is the most natural and non-invasive.
• It can be self-administered.
• It has a variety of formulations.
• It is the most cost effective.
The transmucosal route (e.g. sublingual, buccal or intranasal), is
useful when managing incident pain because this route allows for
rapid absorption. It is important to use small amounts, so that the
medication can be absorbed through the mucosa. Usually a volume
of less than 1 mL is recommended. If the medication volume is
larger than 1 mL, then administer the medication about 5–10
minutes apart in order to allow for proper absorption. Examples
of medications administered using this route are Fentanyl and
Sufentanil. It is often anticipated at end of life (or with any condition
that impacts swallowing) that the oral or transmucosal route may
no longer be possible. When this occurs, other routes should be
considered.
The subcutaneous (subcut) route is the preferred parenteral route.
This route can be used, through a hypodermoclysis site, to give
medication or hydration.
The intravenous (IV) route is an acceptable route if there is an
established IV site or central venous access or if rapid administration
of fluids is required. It can be uncomfortable, reduces the person’s
independence, is no more effective than the subcutaneous route,
and is associated with more complications.
The transdermal route is non-invasive and convenient. A
transdermal patch (e.g. Transdermal Fentanyl, also known as a
Duragesic Patch) slowly releases the drug beneath the skin into the
subcutaneous tissue where it enters the circulation over the course
of 3 days. This option is only suitable for persons whose pain is well
controlled with a stable dose of an opioid and whose previous opioid
needs were the equivalent of at least 45mg of oral Morphine per day.
The rectal route is safe, inexpensive and effective, but its absorption
can be variable. It is not suitable for people with anal or rectal
17
lesions, constipation, diarrhea, or severe thrombocytopenia. This
route may not be acceptable for some people.
The intramuscular route should not be used in the palliative setting
as it causes unnecessary discomfort and absorption is erratic.
The spinal route (e.g. epidural or intrathecal) is the most invasive
route and is commonly reserved for severe intractable pain or when
systemic opioids are causing unacceptable side effects. The use of
this route may impact the ability for people to be cared for outside
a tertiary centre.
Nursing Alert
When converting opioids from one route to another, it is
important to recognize that potency is not equivalent (e.g.
Morphine 10mg oral or rectal = Morphine 5mg parenteral).
(See Appendix D).
10. What are the potential side effects of an
opioid?
One or more of the following side effects may be experienced by
persons on initiation, titration, or rotation of an opioid.
Common Side Effects
• Constipation occurs in almost 100% of persons; therefore, a
regular bowel regime is essential (See Question 31).
• Nausea may be prevalent for the first the 2–3 days but usually
resolves within 24-72 hours. Nausea that persists requires
medical management (See Question 44).
• Somnolence may be present for the first 2-4 days but usually
resolves with continual use of an opioid. (For persistent
somnolence or drowsiness, see Question 13).
• Xerostomia (Dry mouth) is common and occurs with variable
intensity (See Question 62).
18
Less Common Side Effects
• Pruritis (Itchiness) is less common with the administration
of oral and parenteral opioids and more common with the
administration of epidural and spinal opioids (See Question 57).
• Urinary retention is most common with spinal opioids and in
persons with prostatism or urethral stricture.
• Neurotoxicity (See Question 12).
Rare Side Effects
• Respiratory depression can occur if the initial dose is too high,
doses are increased too rapidly, long-acting opioids have been
inappropriately used as breakthrough medication, and/or there
has been incautious use of multiple opioids at the same time.
Persons and their families should be taught about the possibility of
opioid side effects and advised to alert a health care professional
immediately if any such effects are experienced.
Nursing Alert
Older adults may experience a prolongation of side effects
and increased sensitivity due to their decreased metabolism and
excretion of medications. A good rule for using opioids is to ‘start
low and go slow’.
11. What is opioid neurotoxicity?
Opioid neurotoxicity or opioid toxicity is hyperexcitation of the
nervous system secondary to the accumulation of active opioid
metabolites (by-products of drug breakdown in the liver). The
risk of opioid metabolite accumulation and subsequent opioid
neurotoxicity is increased in persons with renal impairment. This
risk seems to be highest with Morphine, Codeine and Oxycodone
and seems lowest with the use of Hydromorphone, Fentanyl and
Methadone.
19
Factors that place persons at higher risk of developing opioid
neurotoxicity include:
• Being frail and/or elderly,
• Impaired renal and/or hepatic function,
• Rapid dose escalation,
• Use of the same opioid for a prolonged period of time, and/or
• Dehydration.
Manifestations of opioid neurotoxicity include:
• Nightmares or vivid dreams causing distress, that may
progress to visual or tactile hallucinations, and less commonly,
auditory hallucinations.
Nursing Alert
People experiencing hallucinations may withhold this
information as they are often afraid that they are “losing their
minds”. It is important to normalize the experience and ask direct
questions. If pain is described as all over and accompanied by
myoclonus and hallucinations, suspect that opioid metabolite
accumulation is occurring.
• Myoclonus is bilateral jerking or seizure-like activity of limbs or
facial muscles which can progress to seizures if not treated.
• Hyperalgesia and allodynia are increased pain responses to a
mildly painful stimulus (hyperalgesia) or pain perceived after a
stimulus that would not normally cause pain (allodynia) such as
a light touch, or being covered with clothing or bed linen.
• Delirium is an alteration in cognitive functioning that has a
sudden onset and includes fluctuating disturbances in one’s
level of consciousness, attention, perception, psychomotor
behaviour and/or emotional state (See Questions 45-48).
20
12. What are the interventions for opioid
neurotoxicity?
• Hydration helps to maintain kidney function and flush the
opioid metabolites out of the system.
• Opioid rotation, as different opioids produce different
metabolites. By rotating or switching from one opioid to
another, the body is able to eliminate the offending metabolites
that are causing neurotoxic side effects.
Nursing Alert
When switching from one opioid to another, beware of
incomplete cross tolerance. With extended use, people may
build up tolerance to the effects of one opioid, requiring increasing
dosages to achieve the same analgesic effect. When switching to
another opioid, this same level of tolerance will not exist; therefore,
the same analgesic effect can usually be maintained using a
20-30% decrease in the dose of the new opioid. If the pain is wellcontrolled prior to the rotation, the dose reduction would be higher
than if the pain is poorly controlled, in which case the reduction
would be lower in order to gain more analgesic effect.
A neuroleptic (e.g. Haloperidol), may be used to control
hallucinations, nightmares or agitated behaviour until the offending
metabolites are eliminated.
Counsel the family regarding the nature of the condition and
provide support during this distressing experience. Reassure them
that 24–48 hours is usually required for reversal of opioid toxicity
symptoms. Non-pharmacologic measures include providing
structure and routine, a quiet room, a visible clock and calendar,
simple explanations, a calm, respectful attitude, and familiar objects
and people.
21
13. How can excessive drowsiness with opioid use
be decreased?
Minor sedation may be experienced by most persons when opioids
are initiated or a dose is increased. Education and reassurance are
required as this symptom will usually clear within a few days. If the
drowsiness continues for longer than 2-4 days and the person is in
good pain control, dose reduction can be trialed. If the current dose
of an opioid or a higher dose is required to achieve optimal pain
relief, a psychostimulant to relieve day time somnolence could be
trialed. However, drowsiness could be due to other medication(s)
such as antidepressants, tranquilizers and antiemetics and/or
metabolic disturbances such as hypercalcemia. Similarly, end stage
disease can also contribute to drowsiness.
14. How are opioids used safely in persons with
renal impairment?
Opioids and their metabolites are excreted via the kidneys. In the
presence of renal impairment, the administration of opioids and
accumulation of their metabolites may result in neurotoxic side
effects (See Question 11).
The risk of opioid neurotoxicity can be reduced by:
• Early recognition of renal impairment,
• Gradually decreasing the opioid dose as renal failure occurs
and/or progresses,
• Administering opioids less frequently (e.g. every 6-8 hours ATC
instead of every 4 hours) or administering PRN doses only and/
or
• Using short acting formulations only.
When there is renal impairment, opioid reduction usually does not
result in a pain increase because opioids are retained in the body
longer and some opioid metabolites have analgesic properties.
Opioid reduction may not be necessary if the person has no undue
side effects. The decision to alter the opioid dose depends on the
goals of care and stage in the illness trajectory.
22
Nursing Alert
In persons with renal impairment, the risk of opioid
neurotoxicity seems to be lowest with the use of Fentanyl
(due to rapid metabolism and excretion), Methadone (due
to minimal active metabolites and fecal elimination) and
Hydromorphone. The risk seems to be highest with the use of
Morphine and Codeine, as well as with slow-release opioids, due to
prolonged clearance times.
15. What are the causes of myoclonus?
Myoclonus is often associated with opioid metabolite accumulation,
but can also be caused by the following:
• Other medications with neurotoxic side effects (e.g. neuroleptics,
anti-depressants or NSAIDs),
• Some neurological disorders,
• Infection and/or
• Metabolic disorders.
The occasional myoclonic jerk, especially when sleeping, is common
even in healthy persons.
16. Does unrelieved pain always require increasing
the opioid dose?
The experience of pain is multi-factorial, and the person may
respond to interventions other than dose increases. Pain
assessments must be done regularly, as the pain mechanism
(nociceptive or neuropathic), pain sites, and acuity may change
with disease progression. Adjuvant medication, radiation therapy,
and surgery are other options that may be required to achieve pain
control.
“Total pain”, where psychological, social and spiritual suffering
is expressed as pain, must be considered in order to address
underlying issues.
23
Unrelieved or escalating pain with increased opioid use is a “red
flag” for opioid toxicity. Increasing the opioid dosage in this situation
may exacerbate the pain and other symptoms caused by opioid
metabolite accumulation. Opioid rotation, rather than opioid dose
increase, would be appropriate in this case.
Depending on the type of pain and the factors influencing the pain
experience, the pain may respond better to:
• The addition of an adjuvant,
• A non-pharmacological intervention and/or
• An alternate route of medication delivery.
Nursing Alert It is important to recognize that unrelieved or escalating pain
may be caused by an accumulation of opioid metabolites.
Paradoxically, an increase in the opioid dosage in this situation
may exacerbate the pain or the person’s perception of pain, rather
than relieve it. This is known as opioid neurotoxicity, which requires
urgent medical treatment (See Question 11).
17. Should opioids ever be withheld?
Yes, in certain situations. Doses may need to be withheld
temporarily when there is evidence of severe side effects such as
abrupt onset of decreased level of consciousness, marked sedation,
respiratory depression (less than 8 breaths per minute) and/or
pinpoint pupils (miosis). This can occur when the dose of an opioid
is rapidly escalated. Regular doses should continue to be held until
these side effects are reversed.
Nursing Alert
Respiratory depression and neurotoxic manifestations may
result from other centrally acting drugs and many other
causes (e.g. brain tumour).
Nursing Alert
If a person receiving oral opioids is required to be NPO for a
procedure, it is important to administer the opioid using a different
route at an equivalent dose.
24
18. Should placebos ever be administered?
No. This approach to pain management is destructive to the
caregiver-person relationship, proves nothing about the reality of
the pain, and should not be used. If you suspect there may be a
psychosocial or spiritual component to the pain, honest discussion
and counselling is the most effective approach. If a physiological
cause for the pain cannot be found and/or the pain is not relieved
by opioids, do not assume that the pain is purely psychosocial or
spiritual in origin. Pain is rarely one-dimensional.
19. What other medications are used in the
management of pain?
Adjuvants are medications that are not primarily indicated for
pain control but may provide analgesic effects in some painful
conditions. Some adjuvants may also potentiate the effect of an
opioid. Adjuvants include the following:
• Anticonvulsants for neuropathic pains (e.g. Gabapentin
100–300mg PO 3-4 times daily titrating up to the most effective
analgesia or intolerable side effects, maximum dose 3600mg in
24 hours).
• Bisphosphonates for control of bone pain (e.g. Clodronate
1500mg IV/subcut, Pamidronate 60-90mg IV or Zoledronate
4-8mg IV as single doses). These drugs may be repeated every
2-6 weeks depending on the medication and effect.
• Chemotherapy agents for control of pain through reduction of
tumour bulk.
• Corticosteroids for lymphatic obstruction, cerebral edema, cord
compression, bowel obstruction, bone pain and liver capsular
pain (e.g. Dexamethasone 4-16 mg PO/subcut per day in one
single daily dose or divided doses).
Nursing Alert
Corticosteroids have the potential to cause night time
insomnia; therefore, divided doses should not be administered later
than 1600 hours. After therapeutic effect is achieved, gradually
taper to lowest effective dose.
25
• Muscle relaxants and antispasmodics for control of pain
related to skeletal muscle spasm (e.g. Baclofen 5mg PO 2
to 3 times daily) and smooth muscle spasm (e.g. Hyoscine
Butylbromide [Buscopan ®] 10mg PO/subcut as needed every 4
hours).
• Non-steroidal anti-inflammatory drugs (NSAID) have a
limited role in the control of bone pain and should be used with
caution or avoided in persons with renal failure, known history
of gastrointestinal ulcers and/or cardiac history (e.g. Diclofenac
50mg PO 3 times daily, with a maximum dose of 150mg PO in
24 hours, Naproxen 250-500mg PO twice daily, with a maximum
dose of 1000mg in 24 hours).
• NMDA antagonists used for neuropathic pain, especially in
those with a hyperalgesic component (e.g. Ketamine 0.5mg/
kg IV per day in 3 divided doses). Due to the potential for
significant psychotic effects, Ketamine should be initiated and
titrated under guidance of a palliative care physician or pain
specialist.
• Topical local anesthetics used for control of some forms of
dysesthetic neuropathic pain such as post-herpetic neuralgia
(e.g. EMLA cream for topical use) or pain from stomatitis (e.g.
Viscous Lidocaine for mucous membranes).
• Tricyclic antidepressants (e.g. Amitriptyline or Nortriptyline
10–25mg PO at bedtime titrating up to a maximum daily dose of
150mg in 24 hours).
• Epidural or spinal anesthetic usually administered in
conjunction with an opioid for selected persons with difficult to
control pain (e.g. Bupivicaine).
It is also important to optimize the disease-specific drugs related
to the management of non-malignant pain in end-stage chronic
illnesses (e.g. optimize cardiac drugs such as diuretics, ACE
inhibitors, beta blockers, vasodilators and Nitroglycerine in
individuals with end-stage heart failure).
Nursing Alert
Benzodiazepines (e.g. Lorazepam) have no analgesic
properties and are extremely sedating. These drugs have
been implicated as one of the most common causes of falls in
acute care settings.
26
Clinical Tip
Reinforce safe medication practices such as keeping
medication out of children’s reach and emphasize that
medications are prescribed for a particular person and are not
intended for use by others. For safety, the person should exercise
discretion with whom information is disclosed regarding their
opioids. Also consider safe disposal for patches as they may
continue to hold active ingredients.
20. What are the non-pharmacological
interventions to control pain?
Cognitive strategies that may facilitate relief of pain include
distraction, diversion and education.
Expressive supportive therapy can be a powerful tool especially
for people who have a large psychosocial or spiritual component
to their pain. Allow persons to express their feelings (e.g. fear or
anger).
Emotive and/or spiritual interventions that can improve pain
control include humor, art, music, religious rituals (e.g. prayer), acts
of forgiveness, reconciliation, and reminiscence.
Environmental factors may play a significant role in pain
management. Ask the person what helps. Dimmed lights, soft
music, a quiet room, and presence of others may reduce the
experience of pain.
Complementary therapies are especially useful for people
who have high locus of control and are comfortable with these
therapies. People who wish to use complementary therapies are
encouraged to discuss their choices with the health care team to
avoid unintended or harmful interactions with medical treatments.
Therapies may include herbs, Reiki, therapeutic touch, meditation,
hypnosis, imagery, and acupuncture.
Occupational and physical therapy pain control techniques
include transcutaneous electronic nerve stimulation (TENS),
massage or relaxation therapy, supports (e.g. collars, brace and
slings) and heat and/or cold application.
27
Palliative radiotherapy is used for control of bone pain and
other types of pain caused by tumour infiltration. Radiotherapy
can provide relief from bone pain in up to 70% of recipients, with
the full benefit often not realized for up to 10-14 days following
treatment. Radiotherapy may be provided as a single large dose or
multiple fractionated doses.
Orthopedic procedures such as internal fixation of an actual
or impending pathologic fracture or spinal instrumentation for
deteriorating vertebrae can significantly improve pain relief and
function.
Surgical resection is used for removal of painful bulky tumours and
to relieve obstructions.
Neurolytic procedures are used for interruption of the transmission
of pain signals when other interventions have proven ineffective
(e.g. celiac plexus block for pain related to pancreatic cancer).
Clinical Tip
The Interdisciplinary Team including the person and family
play an important role in developing individual pain management
strategies. Remember to involve other disciplines in the plan of care
and to include strategies identified by the person and family.
21. How can fears regarding addiction be managed?
Addiction is not the same as physical dependence or opioid
tolerance. Reassure the person that as long as the medication is
taken to relieve physical pain and not to experience its psychological
effects, he or she is not addicted. Problems occur if the opioid is
taken to experience its psychological effects (e.g. to relieve anxiety,
or to address emotional and/or spiritual pain). Assess and address
the person’s and family’s fears regarding addiction.
The differences between physical dependence, addiction and
tolerance are as follows:
• Physical dependence is a normal physiological response to
chronic opioid use. The body adapts to the presence of the
opioid and the person experiences withdrawal symptoms if the
28
opioid is suddenly stopped or an antagonist such as Naloxone
is administered.
• Addiction (psychological dependence) is a pathologic
psychological condition that includes a compulsion to take a
specific drug to experience its psychic effects (e.g. euphoria,
feeling of being high or spaced out).
• Tolerance is a normal physiological phenomenon in which
larger doses of an opioid are required over time to maintain
the same level of analgesia.
22. How is pain managed in persons with an
addiction history?
Follow all the basic principles of opioid therapy as already
outlined (See Question 5-13). Discuss the addiction history in an
open, honest and non-judgmental manner. Commit to working
together to control the pain. Expect that the person may require
higher dosages of opioid to control the pain given the possibility
of tolerance. Monitor carefully for signs that the person may be
using the opioid to cope with problems other than the pain (See
Question 3). Reassure the person that addiction is rarely an issue
when opioids are used for the reason they are prescribed.
Consider developing and signing a therapeutic agreement with the
person, wherein the person agrees to:
• Take opioids only for relief of physical pain not to “get high”, to
sleep or to calm nerves,
• Adhere to prescribed dosage and frequency,
• Obtain opioids from a single provider
• Refrain from sharing or selling opioids,
• Recognize that lost prescriptions or medications will not be
replaced.
If the person is at home, recommend short dispensing intervals
so that the person does not have large quantities of opioids in
their possession at any given time. Provide information about and
facilitate connection with appropriate counselling and support
personnel. Teach the person and family how to use assessment
tools (See Appendix A and B) and encourage them to monitor the
intensity of pain and the use of BTA.
29
23. What can be done when family members give
or request opioids inappropriately?
A life-limiting illness affects the family as well as the person. It is
therefore important to develop a therapeutic relationship with
the family so that you can communicate and understand their
perspectives.
Nursing Alert
Family members may give or request pain medication
because they misinterpret the ill person’s behaviour as
pain. This is more common when the ill person is unable to clearly
express his or her needs. Should this scenario occur, ask the
family what they are seeing that leads them to believe the person
is having pain and explain what you are seeing that leads you to
think differently.
Explain to the family that:
• Moaning, grimacing, restlessness and agitation may indicate
delirium rather than pain. Delirium may actually be worsened,
rather than be relieved, by the administration of opioids.
• Moaning may simply be air moving over vocal cords as they
relax.
• Opioid toxicity may lead to significant discomfort (e.g.
hallucinations, agitated delirium, myoclonus and/or
hyperalgesia).
• Ask family members to record medication administration and to
note the events around the administration.
• Teach family members non-pharmacological means to comfort
the ill person (e.g. relaxation, massage, touch or music).
Acknowledge the emotional pain experienced by the family and
commend them on their efforts to comfort the ill person.
It is important to involve other team members to include the
family and offer support to address their emotional pain. Family
members often feel powerless and helpless in the face of advancing
disease and can feel more empowered through the provision of
interdisciplinary support.
30
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Anorexia and Cachexia
24. What is cancer associated anorexia/cachexia
syndrome (CACS)? What are the causes?
CACS is a hypercatabolic state. Anorexia (loss of appetite) and
cachexia (loss of weight and catabolism of adipose tissue and
skeletal muscle) will occur in 80-90% of people with advanced
cancer. Anorexia cachexia occurs in many other non-cancers
advanced illnesses. These problems are often accompanied by
asthenia, a constellation of symptoms including severe lethargy,
generalized weakness, decreased immune response and profound
fatigue. The syndrome may also include chronic nausea.
Causes
Primary anorexia and cachexia is a result of three processes that
prevent normal metabolism of nutrients and is associated with an
altered inflammatory state:
• Complex metabolic alterations resulting in muscle wasting and
loss of fat.
• Neuroendocrine alterations resulting in loss of appetite, early
satiety, and chronic nausea.
• Metabolic modifications resulting in decreased muscle building
and asthenia.
There are three types of secondary anorexia and cachexia:
1. Starvation or malnutrition caused by:
– Decreased oral intake secondary to a number of factors,
– Impaired GI absorption (e.g. malabsorption, exocrine
pancreatic insufficiency and/or chronic severe diarrhea),
– Loss of proteins through body fluids (e.g. frequent drainage of
ascites or pleural fluid and nephritic syndrome).
2. Catabolic states unrelated to cancer (e.g. infections or chronic
heart failure).
3. Loss of muscle in the absence of cachexia and wasting due to
decreased muscle activity secondary to limited mobility.
33
Decreased oral intake can be due to stomatitis, taste alterations,
zinc deficiency, dry mouth, dehydration, dysphagia, severe
constipation, bowel obstruction, vomiting, severe pain, severe
dyspnea, depression, cognitive impairment, social or financial
obstacles, and anxiety.
25. How can appetite and oral intake be optimized?
Managing early satiety is important because after eating a small
amount, a person may feel full and/or nauseated, and may vomit
food that was eaten several hours earlier. Early satiety often
results from gastric stasis (delayed emptying of the stomach)
and/or slowed peristalsis. Specific causes of gastric stasis include
medications, autonomic dysfunction, hepatomegaly, tumour of
upper gastrointestinal tract, or ascites.
Assessment
1. History – appetite, weight change, bowel habits, dietary intake,
food habits, food aversion or intolerance, symptoms affecting
nutrition, medication, change in body image, and emotional
impact on person and family.
2. Physical examination – measures of nutritional status
(e.g. weight and height ratio (BMI), functional status, oral
assessment).
3. Investigations – blood work (e.g. albumin and/or serum
transferrin), professional to assess dysphagia and oral intake.
34
Non-Pharmacological Interventions
Consult speech and language pathologists for management of
dysphagia. Consult occupational therapists for help with energy
conservation strategies (see Appendix E) and the actual physical
process of eating.
Specific interventions may include:
• Completing oral care prior to eating
• Eating small frequent meals that are high calorie, low volume,
and culturally appropriate
• Eating when hungry rather than at typical meal times
• Experimenting with texture, temperature, and seasonings
• Increasing activity as tolerated.
Pharmacological Interventions
• Review potentially offensive medications (e.g. opioids,
anticholinergics, and antispasmodics).
• Promotility agents may stimulate gastrointestinal peristalsis
and reduce early satiety (e.g. Metoclopramide 5-20mg PO/
subcut or Domperidone 5-20mg PO four times daily, maximum
dose 120mg in 24 hours).
• Progestational agents may stimulate the appetite resulting
in increased caloric intake, body weight (mostly water) and
sense of well-being, but there is a risk of thromboembolic
complications (e.g. Megestrol acetate 400-800mg PO per day
in divided doses, maximum dose 800mg in 24 hour).
• Corticosteroids may improve appetite resulting in increased
food intake, performance, and quality of life, with no change in
muscle mass. They have a short term benefit of approximately
three weeks. Other possible benefits are the control of coexisting nausea and possible relief of any obstruction (e.g.
Dexamethasone 4-8mg PO/subcut twice daily or Prednisone
5-25mg PO per day).
35
26. What can be done to assist persons and their
families cope with reduced nutritional intake?
Eating is commonly associated with health and well-being. When
people are no longer able to eat or drink, this change can often
cause distress to families.
Intervention Strategies
• Provide adequate education and counselling that address the
family’s anxiety and concerns. Explain that cachexia is not the
same as starving to death, but instead is the result of metabolic
abnormalities caused from cancer. Giving the person more food
will not result in fat or muscle mass gain.
• Explain that forcing a person to eat will have no impact on wellbeing or survival, but instead may result in increased distress,
discomfort and nausea.
• Reassure the family that the decrease in food and fluid intake is
because of the illness and not because the person is giving up.
• Encourage family members to think of food as a comfort
measure. Suggest offering culturally appropriate and favourite
foods without worrying about nutritional value.
• Emphasize the importance of fluids over solids to maintain
hydration.
• Encourage the family to try to preserve the social benefits of
meal times (e.g. have the ill person join the table at mealtime
even if intake is minimal).
• Help create the best conditions for eating, address nausea and
pain, provide good mouth care, ensure a pleasant setting for
meals, and offer frequent small meals according to the person’s
preferences.
• Encourage family to provide other methods of caring such as
moistening the person’s lips and oral cavity, providing light
massage, and/or reading or playing music.
36
Nutritional Tips
Add extra calories for energy.
• Spread plenty of butter/margarine on toast, muffins, rolls,
potatoes, and rice.
• Add peanut butter, jam, and honey to bread.
• Pour sauces or gravies over potatoes, meat ,and vegetables.
• Add sour cream or mayonnaise to vegetables, salads, and
sandwiches.
• Spread cream cheese on bread, muffins, fresh fruit, and crackers.
• Melt cheese over bread, vegetables, or potatoes.
• Scoop ice cream on desserts or into carbonated beverages.
• Drink homogenized milk.
• Drink milkshakes or hot chocolate made with whole milk.
• Add cream to cereals, hot beverages, and fresh fruit.
• Top desserts or fruit with whipped cream or yogurt.
Add protein for strength.
• Grate cheese onto vegetables, pasta, bread, casseroles, and soup.
• Dice fish, chicken or beef into casseroles, soup, and sauces.
• Eat yogurt or cottage cheese alone or added to recipes.
• Add eggs into sauces and soups, bake in puddings, sponge cakes,
and custards.
• Add 3-4 tablespoons of skim milk powder to each cup of milk. This fortified milk can be added to soup, sauces, scrambled eggs,
casseroles, hot cereals, puddings, custards, and milkshakes.
• Use milk instead of water to make soup, sauces, hot cereal, and
cocoa.
• Blend eggs into sauces and soups; bake eggs in puddings.
Other ideas
• Check your recipe books for foods that may appeal to the
person.
• Vary the colour of food served on the plate (e.g. arrange food
attractively or add a slice of tomato, orange, or a sprig of
parsley).
• Eat small amounts of nutritious foods six to eight times each day.
• Keep nutritious snacks such as raisins, nuts, fruits, and yogurt
close at hand.
37
• Eat the main meal at the time when the person feels the best
during the day.
• Alcohol may increase appetite (e.g. include a glass of wine or a
cocktail before the meal).
• An eating schedule may be necessary to remind the person to
eat.
• Chew foods slowly to prevent the stomach from becoming too
full too quickly.
• Make sure fluids are nutritious such as juices, milk, or
milkshakes.
• Rely on food the person really loves during times when he or
she is not hungry.
• Concentrate on making the meal more enjoyable with attractive
settings, bright surroundings, and good company.
• If appetite is reduced by nausea, eat small portions of dry foods
like crackers, pretzels, or toast.
• Limit procedures, treatments, or other stresses immediately
prior to meals.
27. Is nutritional support beneficial?
[Nutritional support may include vitamins, calorie dense drinks,
enteral formulas, and total parenteral nutrition (TPN).]
Not necessarily. When a person has anorexia cachexia syndrome,
feeding by any route will not improve his or her nutritional
status, as the metabolic and tumour-related factors causing this
syndrome cannot be changed. There is no evidence that nutritional
supplements will reverse cachexia. Further research is needed to
determine whether supplements will improve energy levels and
an overall sense of well-being. Some people will find that liquid
supplements (e.g. Boost ®, Ensure ®, Resource ® or Carnation
Instant Breakfast®) are easier to ingest than full meals. The use of
supplements to increase protein, vitamins, and caloric intake at a
time when the person has an appetite can be encouraged.
38
Nursing Alert
Tube feeding and TPN are not beneficial in most palliative
situations. As with other forms of nutritional intake, these
nutritional therapies have not been shown to improve survival.
With parenteral nutrition in particular, research has shown
low potential benefit and high risk for serious side effects (e.g.
septicemia or electrolyte imbalances).
In persons for whom loss of weight and muscle may be primarily
attributed to factors other than advanced anorexia and cachexia,
there may be a temporary benefit from nutritional support. People
who may potentially benefit from tube feeding or TPN include those
persons with:
• Head and neck cancer that interferes with ingestion and
swallowing,
• Hastrointestinal obstruction from intra-abdominal disease,
• Severe depression,
• Abnormalities of taste,
• Chronic nausea and/or vomiting and/or
• Malabsorption secondary to pancreatic insufficiency, short gut
syndrome, fistula formation or late effects of radiation therapy
to the abdomen.
When a decision is made to commence nutritional support, this
decision should be accompanied with criteria by which to measure
the benefit (e.g. weight gain, improved energy, and/or improved
quality of life as guided by the goals of care). Prior to initiating
these interventions, decisions related to when and if to discontinue
nutritional support would therefore be clearly understood by the
person, family members, and health care professionals. When this
type of nutritional support is not indicated, an explanation of the
lack of proven benefit and associated morbidity is essential.
The provision of nutritional support to the person is indicated
especially if he or she still has an appetite. Expected benefits
may include improved energy, slowed weight loss, and relief of
symptomatic distress from hunger. In a person with irreversible
altered mental status, these subjective benefits may not be realized
and, hence, the initiation of this type of nutritional support would
be inappropriate.
39
References
Brown, J. K. (2002). A systematic review of the evidence on
symptom management of cancer-related anorexia and cachexia.
Oncology Nursing Forum, 29(3), 517-532.
Downing, M. G. & Wainwright, W. (2006). Cachexia-Anorexia
Syndrome (CAS). Medical Care of the Dying, (4th ed., pp. 307309). Victoria, BC: Friesens Corporation, Canada.
Grant M., & Kravits, K. (2000). Symptoms and their impact on
nutrition. Seminars in Oncology Nursing, 16(2),113-121.
Holmes, S. (2009). A difficult clinical problem: Diagnosis, impact
and clinical management of cachexia in palliative care.
International Journal of Palliative Nursing, 14(7), 320-326.
Laviano, A., Meguid, M. M., Inui, A., Muscaritoli, M., & Rossi-Fanelli,
F. (2005). Therapy insight: Cancer anorexia−cachexia syndromewhen all you can eat is yourself. Nature Clinical Practice
Oncology, 2(3), 158-165.
MacDonald, N. (2003). Is there evidence for earlier intervention
in cancer-associated weight loss? The Journal of Supportive
Oncology, 1(4), 279-286.
Ross, D., & Alexander, C. (2001). Management of common
symptoms in terminally ill patients: Part I. Fatigue, anorexia,
cachexia, nausea and vomiting. American Family Physician,
64(5), 807-814.
Sarhill, N., Mahmoud, F. A., Christie, R., & Tahir, A. (2003).
Assessment of nutritional status and fluid deficits in advanced
cancer. American Journal of Hospice and Palliative Care, 20(6),
465-473.
Strasser, F. (2003). Eating-related disorders in patients with
advanced cancer. Supportive Care in Cancer, 11(1), 11-20.
Strasser, F., & Bruera, E. (2002). Update on anorexia and cachexia.
Hematology Oncology Clinics of North America, 16(3), 589-617.
UpToDate. (2011, February 11). End of life care: Overview of
symptom control. Retrieved from http://www.uptodate.com/
store
UpToDate. (2011, January). Pharmacologic management of cancer
related anorexia/cachexia. Retrieved from http://www.uptodate.
com/store.
40
Constipation, Diarrhea and
Bowel Obstruction
28. What is constipation? How is it assessed?
Constipation is the passage of small, hard stools that may be
painful or difficult to pass and/or a prolonged interval between
bowel movements (normal range is 1 in 3 days to 3 in 1 day) and/
or incomplete evacuation of stool.
Suspect constipation in any person who presents with one or more
of the following:
• Irregular bowel movements (especially if no bowel movement
for 3 or more days),
• Firm or hard stools,
• Bypass diarrhea (liquid stool oozing around a constipated
mass),
• Anorexia, nausea, and/or emesis,
• Abdominal distension/discomfort and/or bloating,
• Bowel obstruction
• Regular opioid use.
Assessment
1. History – Include the person’s normal bowel pattern, date of
last bowel movement, quality, quantity and frequency of stools,
feeling of abdominal discomfort, bloating or rectal fullness,
sense that bowels are not moving often enough, difficulty/
pain with passing stools, onset of the problem, nausea, and/or
vomiting. Review medications, as medications such as opioids
can contribute to constipation. Assess food and fluid intake.
2. Physical assessment
Abdominal assessment – Inspect the abdomen for bloating,
distension, and/or bulges. Auscultate to assess bowel sounds.
Palpate to evaluate abdominal tenderness and/or stool
especially in the left colon.
Digital rectal exam – Assess the amount and consistency of
stool in the rectum.
41
3. Investigations – Abdominal flat plate to quantitatively assess
the amount and location of stool in the colon. The amount of
stool in each of the ascending, transverse, descending, and
sigmoid colon is scored on a scale of 0 to 3, where:
0 = no stool
1 = stool fills <50% of lumen
2 = stool fills >50% of lumen
3 = stool completely fills lumen
The total score yields a “constipation score” out of 12. A score of
7/12 or more indicates severe constipation and requires aggressive
intervention to empty the colon.
29 What causes constipation?
Causes
The most important causes of constipation are medications and
systemic effects of terminal disease.
Contributing factors:
• Dehydration (e.g. reduced fluid intake and/or increased
insensible losses),
• Poor gut motility (e.g. increased fluid absorption due to
prolonged transit time),
• Medications (e.g. Opioids, Anticholinergics, 5-HT3 Antagonists,
Antidepressants, Antiepileptics, Iron supplements, Antacids),
• Metabolic disturbances (e.g. hypercalcemia, uremia,
hypothyroidism, diabetes),
• Neurological Disorders (e.g. cerebral tumours, spinal cord
involvement, sacral nerve involvement, autonomic nerve failure
such as MS, Parkinsons, motor neuron disease ),
• Structural abnormalities (e.g. malignant ascites pelvic tumour
masses, radiation fibrosis, anal rectal conditions such as fissures,
abscess, hemorrhoids),
• Other (e.g. inattention to normal body functions secondary to
altered mental status, inactivity and weakness, advanced age,
depression, decreased mobility, lack of privacy).
42
30. What are the complications of constipation?
Complications
•
•
•
•
•
•
•
•
Increased pain,
Abdominal distension or discomfort,
Anorexia, nausea, and/or vomiting,
Hemorrhoids or anal fissures,
Bowel obstruction,
Urinary retention,
Agitation and restlessness,
Exacerbation of confusion.
Nursing Alert
Overflow diarrhea is liquid stool oozing around a
constipated mass. Before holding laxatives or treating
with antidiarrheals, the possibility of significant constipation with
bypassing stool must be ruled out. People with advanced cancer
are far more likely to experience constipation than diarrhea;
suspect overflow diarrhea in this population.
Nursing Alert
Constipation may be an early sign of spinal cord
compression when accompanied by decreased perianal sensation
and decreased rectal tone.
43
31. What are the interventions for constipation?
In the absence of oral intake, the body continues to produce 2-3
ounces of stool per day. The bowel lining is continually renewing itself.
Sloughed cells, along with bacteria and digestive juices, comprise
much of the stool. A person can easily become constipated even when
he or she is not eating.
Prevent Constipation
• Encourage increased fluid intake.
• Ensure all people on regular opioids are on a bowel routine and
bowel function is assessed daily.
• Although fibre may be effective, bulk laxatives (e.g. Metamucil®),
are not recommended, as the inability to drink enough fluid
will make stool extremely hard and may result in or add to an
obstruction.
• Encourage physical activity as tolerated as this increases peristalsis.
• Provide adequate time and privacy to defecate.
Pharmacological Interventions
Oral bowel stimulants are started simultaneously with opioids.
Examples include:
• Senna, usual starting dose is 1-2 tabs orally at bedtime but can be
increased to 2-4 tabs twice daily and up to 4 times daily as needed.
• Lactulose, usual dose 30 mL 1-3 times daily orally. Lactulose may,
however, be poorly tolerated due to its sweet taste, abdominal
bloating and/or cramping effect.
• Polyethylene glycol 3350 (PEG 3350), usual dose 17 grams daily by
mouth, up to 75 g/day.
Adjust dosages and frequencies of oral bowel stimulants as needed to
ensure the person has a soft, formed bowel movement every 1-2 days.
Rectal laxatives are useful if there is stool in the rectum or if the
person does not tolerate oral laxatives. If there is no soft bowel
movement at least every 3 days, give a stimulant suppository (e.g.
Bisacodyl) and, if ineffective, give a micro or sodium phosphate
enema.
44
Methylnaltrexone (Relistor®) is an injectable laxative given
subcutaneously. This laxative is generally not used as a first-line
therapy, but rather for acute management when other methods
have failed, and/or for maintenance when oral laxatives have been
ineffective. The dosage is based on the person’s weight (e.g. weight
8-62 kg give 8mg subcut; 63kg-114kg give 12 mg subcut). Relistor®
is not effective for every person but it can work within 30 minutes
or sometimes a bit longer.
If the above interventions are ineffective, further action is guided by
results of a digital rectal exam.
• If there is soft stool in rectum, repeat the stimulant suppository
and/or sodium phosphate enema. If ineffective, try larger
volume enema (e.g. soap suds).
• If there is firm stool in the rectum, soften stool with a mineral
oil enema followed by a stimulant suppository and/ or micro or
sodium phosphate enema. If ineffective, try a high mineral oil
enema followed by a large volume enema to clear the mineral
oil from the bowel.
If the rectum is empty but other symptoms indicate probable
impaction, consider a flat plate of the abdomen to assess the
amount and location of stool within the colon and treat accordingly.
• If there is stool in the ascending or transverse colon, the oral
route may be the most effective; a bottle of Magnesium Citrate
may be required.
• If there is stool in the descending or sigmoid colon or rectum,
the rectal route is more likely to be effective. A larger volume
enema may be required.
• If there is overflow diarrhea, continue to administer laxatives to
expel the constipated mass.
Nursing Alert
Before initiating aggressive laxative and/or enema
administration, rule out possible bowel obstruction. Such
therapies are contraindicated in the presence of bowel obstruction,
unless the obstruction is due to constipated stool. One good
response to a laxative or enema doesn’t mean that constipation is
resolved. The sigmoid colon may be clear but the remaining colon
may still be full of stool.
45
Rectal procedures are invasive and carry some risk in certain
circumstances. As with any procedure, they should not be
performed when the potential benefits do not clearly outweigh the
risks. Contraindications include:
• Rectal bleeding – if only mild bleeding, enemas can usually be
given safely,
• Rectal tumours – are often very vascular and these people are at
greater risk of tissue injury,
• Heart problems – arrhythmias can be triggered by vagal
stimulation,
• Leukothrombocytopenia – people with decreased cell counts
are at increased risk of infection and bleeding with any invasive
procedure.
People with painful hemorrhoids may avoid defecating and
become constipated. Use of local anaesthetic creams or ointments
may reduce local discomfort with defecation and also aid the
use of suppositories or enemas. Keeping stools soft and easily
evacuated is important for reduction of rectal pain and prevention
of constipation for persons with rectal tumours or hemorrhoids.
Prevention of constipation is also important for persons with intraabdominal tumours or malignant ascites so abdominal distention
and discomfort are not exacerbated by an excessive stool burden.
46
32. How is diarrhea assessed?
What are the causes?
Diarrhea is an increase in stool volume and liquidity resulting in 3 or
more bowel movements per day.
Associated symptoms may include abdominal cramping, anxiety,
general malaise, dehydration, electrolyte abnormalities, excoriated
perineum or ostomy site, and pain.
Assessment
1. History – onset, duration, frequency, aggravating and alleviating
factors, stool volume and description, fluid and diet intake,
presence of nausea, vomiting and/or pain. Review medications,
imaging and surgical history.
2. Physical assessment – examine perineum or ostomy site,
perform abdominal and digital rectal exam, and observe for signs
of dehydration.
3. Investigations – stool specimens including C. difficile,
Vancomycin Resistant Enterococci (VRE), Methicillin-resistant
Staphylococcus aureus (MRSA) and/or ova and parasites (O&P).
Causes
• Fecal impaction with overflow diarrhea,
• Overuse of laxative therapy, dietary fibre and/or hyperosmolar
preparations (e.g. enteral feeds),
• Pelvic or lower abdominal radiation therapy,
• Malabsorption (e.g. pancreatic disease, gastrectomy, ileal
resection or colectomy),
• Enterocolic fistula,
• Infection by intestinal or other organisms. If recent or frequent
hospital stay(s) consider C. difficile, MRSA, E. coli and/or VRE. If
HIV positive, consider infections common to HIV/AIDS that cause
diarrhea, such as cryptosporidiosis.
• Surgical shortening of the bowel,
• Tumour type (e.g. carcinoid tumours or villous adenomas),
• Medications (e.g. antacids, antibiotics, certain NSAIDs) in
susceptible people or sorbitol (found in “sugar-free” elixirs and
tube feeds),
47
• Concurrent diseases (e.g. inflammatory or irritable bowel
syndromes, diabetes or hyperthyroidism),
• Metabolic abnormalities (e.g. hypomagnesemia and
hypocalcemia).
33. What are the interventions for diarrhea?
Non-Pharmacological Interventions
•
•
•
•
Provide psychosocial support.
Monitor skin for breakdown and treat appropriately.
Maintain hydration and electrolyte balance.
Consider dietary measures such as small frequent bland meals,
a low residue or potassium rich diet (e.g. “Brat” – Bananas,
Rice, peeled Apples and Toast).
• Treat any reversible causes (e.g. rule out constipation, manage
infections or reassess medications).
Pharmacological Interventions
• Anti-diarrheal agents such as non-opioid (Imodium®,
Kaopectate® or selective use of Metamucil®) or opioids
(Lomotil® or Codeine).
• Octreotide (Sandostatin ®) 50-200mcg subcut 3 times daily,
maximum dose 600mcg in 24 hours.
• Cholestyramine capsules prior to meals, if pancreatic
insufficiency or cystic fibrosis.
Nursing Alert
If overflow diarrhea is suspected, refer to pharmacological
interventions for constipation (See Question 31).
48
34. What is bowel obstruction?
What are the causes?
Bowel obstruction occurs when the intestinal contents fail to propel
forward through the lumen, either as a result of mechanical
blockage or impaired motility secondary to the loss of propulsive
peristalsis or paralytic ileus (sometimes called functional or
pseudo-obstruction). Partial or complete malignant bowel
obstruction is common in persons with advanced intra-abdominal
or pelvic, colorectal, and ovarian cancers. Bowel obstruction occurs
less commonly in other cancers such as cervical, gastric, pancreatic,
uterine, and lymphomas.
Causes
Mechanical obstruction from:
• External tumour or nodal mass compressing small or large
bowel, rarely from tumour within the bowel,
• Malignant adhesions or strictures resulting from carcinomatosis
or peritoneal seeding within the abdominal cavity, often
resulting in multiple sites of obstruction. Adhesions or strictures
may also be secondary to intestinal surgery or radiation therapy
• Impacted feces (obstipation).
Functional obstruction from:
• Carcinomatosis, peritoneal seeding, bowel wall invasion, or
malignant adhesions within the abdominal cavity,
• Diabetic neuropathy,
• Peritonitis or prolonged intestinal inflammation,
• Autonomic dysfunction secondary to:
– Medication (e.g. opioids),
– Metabolic abnormalities (e.g. hypokalemia or
hypercalcemia),
– Spinal cord injury, or
– Post-operative ileus, ischemia or intestinal edema.
49
35. What are the signs and symptoms of bowel
obstruction? How is it assessed?
Signs and Symptoms
Nausea and vomiting will occur in 100% of people with an
obstruction. Presentation varies depending on the site of the
obstruction:
• Gastric outlet obstruction is associated with large volume
projectile emesis that often occurs without warning.
• Small bowel obstruction is associated with early onset emesis,
can be large in volume, and is common shortly after oral intake.
• Large bowel obstruction is associated with emesis that develops
later on and may include fecal content.
Abdominal pain is described as colicky or cramping pain and is
often located near the site of obstruction. Prior to the onset of
vomiting, pain will often occur in the majority of people with an
obstruction.
Abdominal distension is more significant in cases of obstruction of
the large bowel versus the small bowel.
Changes in bowel sounds may include:
• Hyperactive and high-pitched tinkling sounds suggesting
intestinal fluid and air under tension in a dilated bowel (rushes
of high-pitched sounds coinciding with abdominal cramping
indicate intestinal obstruction and are more common in partial
obstruction),
• A succussion splash, which is a sloshing sound of retained
gastric contents audible during rocking of the upper abdomen,
• Diminished or absent bowel sounds, which usually indicate
complete obstruction.
Changes in bowel movements may include:
• Infrequent bowel movements,
• Bowel movements normal in frequency but reduced calibre
(pencil-like stools),
• Incomplete emptying secondary to overflow diarrhea.
Absence of flatus is associated with complete obstruction.
Evidence of air/fluid levels on abdominal x-ray is associated with
obstruction.
50
Nursing Alert
Regular bowel assessments are necessary in order to detect
bowel obstruction. Signs and symptoms of bowel obstruction may
be acute with nausea, vomiting, and abdominal pain; however, it is
often a slow, insidious process which may progress from partial to
complete obstruction.
36. What are the interventions for bowel
obstruction?
Non-Pharmacological Interventions
• Reduce intake and promote bowel rest.
• Continue with small amounts of liquids or soft diet in the
presence of an incomplete or distal obstruction, if tolerated.
• Provide good mouth care. Assess and treat oral candidiasis
especially for persons on medications that cause
immunosuppression. Use ice chips or artificial saliva, especially
if the person is NPO.
• Prevent dehydration through administration of 1-2 litres of fluid
per day via hypodermoclysis or intravenous.
Nursing Alert
In the presence of an incomplete bowel obstruction, some
persons may tolerate a soft diet to facilitate movement
through narrowed bowel lumen.
Pharmacological Interventions
• Decrease painful peristalsis (e.g. Hyoscine butylbromide
[Buscopan ®] 10-20mg subcut every 4-6 hours, maximum dose
120mg in 24 hours).
• Reduce GI secretions and bowel wall edema (e.g. Octreotide
50-200mcg subcut every 8 hours).
• If tumour or tumour related edema is suspected, give
antinflammatory medications (e.g. Dexamethasone 4-20mg
PO/subcut per day in one single daily dose or divided doses).
May provide relief of symptoms and/or possibly transform a
complete obstruction to a partial one.
51
• Control nausea and vomiting without stimulating peristalsis, use
antiemetics with no promotility effect (e.g. Haloperidol 0.5–5mg
PO/subcut every 6-8 hours, maximum dose 20mg in 24 hours).
• Control visceral pain by giving opioids via a non-oral route.
• Correct electrolyte imbalances, if appropriate
• If the obstruction is due to fecal impaction, aggressive
administration of enemas and oral laxatives is indicated.
Nursing Alert
In the event of a partial bowel obstruction, prokinetic agents
such as Metoclopramide or Motilium ® and vigorous use of
enemas and oral laxatives may prevent progression to a complete
obstruction. However, there is a relative contraindication to the use
of prokinetic agents such as Metoclopramide and oral laxatives in
the presence of complete bowel obstruction as they may exacerbate
pain, nausea, and vomiting and could lead to bowel perforation,
particularly if they occur higher in the bowel.
Invasive Interventions
• Decompress the GI tract when there is persistent, significant
nausea, vomiting, and abdominal distension despite optimal
medical management. Use a nasogastric (NG) tube for this
purpose on a temporary basis.
• Consult Gastrointestinal specialist to determine appropriateness
of a percutaneous venting procedure that may provide longer
term symptom management.
• If there is a well-defined locus of mechanical intestinal
obstruction secondary to malignancy, consider correction via
surgical resection or stent insertion. If the obstruction is at the
level of the esophagus, stent insertion or dilatation procedures
could be effective. Factors such as extent of disease, prognosis,
goals of care, and quality of life must be taken into account when
considering the appropriateness of the surgical intervention.
Clinical Tip
Liquid to soft nutrients may still be enjoyed by persons with
NG or venting decompression tubes as what is swallowed
will be eliminated via the drainage system.
52
References
Abernethy, A., Wheeler, J., & Zafar, Y. (2009). Detailing of
gastrointestinal symptoms in cancer patients with advanced
disease: New methodologies, new insights, and a proposed
approach. Current Opinion in Supportive and Palliative Care,
3(1), 41-49.
Candy, B., Jones, L., Goodman, M. L., Drake, R., & Tookman, A.
(2001). Laxatives or Methylnaltrexone for the management of
constipation in palliative care persons. Retrieved from
http://www.cochranejournalclub.com/management-ofconstipation-clinical/pdf/CD003448.pdf
Chamberlain, B. H., Cross, K., Winston, J. L., Thomas, J., Wang,
W., Su, C., & Israel, R. J. (2009). Methylnaltrexone treatment of
opioid induced constipation in patients with advanced illness.
Journal of Pain and Symptom Management, 38(5), 683-690.
Clemens, K. E., & Klaschik, E. (2008). Management of constipation
in palliative care patients. Current Opinion in Supportive and
Palliative Care, 2(1), 22-27.
Economou, D.C. (2005). Bowel management: Constipation,
diarrhea, obstruction, and ascites. In B. Ferrell & N. Coyle (eds.),
Textbook of palliative nursing (2nd ed., pp. 219-238). New York:
Oxford University Press.
Feuer D.J., Broadley, K.E., Shepherd, J.H., & Barton, D.P. (2000).
Surgery for the resolution of symptoms in malignant bowel
obstruction in advanced gynaecological and gastrointestinal
cancer. Cochrane Database of Systematic Reviews [Computer
File],(4):CD002764.
Fraser Health. (2006). Bowel care. Retrieved from http://www.
fraserhealth.ca/media/04FHSymptomGuidelinesBowelCare.pdf
Fraser Health. (2006). Malignant bowel obstruction.
Retrieved from http://www.fraserhealth.ca/media/13FHSymptom
GuidelinesMalignantBowelObstruction.pdf
Friedrichsen, M., & Erichsen, E. (2004). The lived experience of
constipation in cancer patients in palliative hospital-based home
care. International Journal of Palliative Nursing, 10(7), 321-32.
Larkin, P. J., Sykes, N., Centeno, C., Ellershaw, J., Elsner, F., Eugene,
B., Gootjes, J., Nabal, M., Noguera, A., Ripamonti, C., Zucco, F.,
& Zuurmond, W. (2008). The management of constipation in
53
palliative care: Clinical practice recommendations. Palliative
Medicine, 22, 796-807.
Librach, S. L., Bouvette, M., De Angelis, C., Farley, J., Oneschuk, D.,
Pereira, J. L., & Syme, A. (2010). Consensus recommendations
for the management of constipation in patients with advanced,
progressive illness. Journal of Pain & Symptom Management,
40(5), 761-773.
McMillan S.C. (2002). Presence and severity of constipation in
hospice patients with advanced cancer. American Journal of
Hospice and Palliative Care, 19(6), 426-430.
Peate, I. (2003). Nursing role in the management of constipation:
Use of laxatives. British Journal of Nursing, 12(19), 1130-1136.
Ramkumar, D., & Satish, S. S. C. (2005). Efficacy and safety of
traditional medical therapies for chronic constipation: Systematic
review. American Journal of Gastroenterology, 100, 936-971.
doi:10.1111/j.1572-0241.2005.40925.x
Ripamonti, C., & Mercadanta, S. (2004). How to use octreotide
for malignant bowel obstructions. Supportive Oncology, 2(4),
357-365.
Ripamonti, C., Easson, A., & Gerdes, H. (2008). Management of
malignant bowel obstruction. European Journal of Cancer, 44,
1105-1115.
Thomas, J., Karver, S., Cooney, G. A., Chamberlain, B. H., Watt,
C. K., Slatkin, N. E., Stambler, N., Kremmer, A. B., & Israel, R.J.
(2008). Methylnaltrexone for opioid-induced constipation
in advanced illness. The New England Journal of Medicine,
358(22), 2332-2343.
Woolery, M., Bisanz, A., Lyons, H. F., Gaido, L., Yenulevich, M.,
Fulton, S., McMillan, S. C. (2008). Putting evidence into
practice: Evidence-based interventions for the prevention and
management of constipation in patients with cancer. Clinical
Journal of Oncology Nursing, 12(2), 317-337.
54
Dehydration
37. What is dehydration?
How is dehydration assessed?
Dehydration is a loss of normal body water. Unfortunately, it is
often difficult to assess hydration in people with advanced illness.
Therefore, findings from a variety of assessments are most reliable.
Assessment
1. History – Assess appetite, oral intake, associated symptoms (e.g.
nausea, vomiting, diarrhea, drowsiness, fatigue, and confusion).
2. Physical Examination – Assess skin and oral cavity, dry mucous
membranes, jugular venous pressure (JVP), blood pressure,
pulse, temperature, ascites, muscle weakness.
3. Investigation – Serum urea, creatinine, sodium, hematocrit.
Nursing Alert
In severe cachexia, the skin turgor is hard to assess and is
often not reliable. Similarly, thirst and edema are not good
indicators of hydration status.
38. When is it beneficial to hydrate?
As persons become increasingly debilitated, they will be at greater
risk for dehydration. Treating dehydration can be a controversial
topic. Decisions related to hydration need to be person and family
focused and guided by goals of care. Different palliative care
programs have varying philosophies regarding hydration.
Treating dehydration that appears to be contributing to symptom
distress could be considered reasonable. For example, in cases of
dehydration, kidneys cannot effectively eliminate metabolites and
body waste. As these metabolites accumulate, they may cause
distressing symptoms such as nausea, constipation, confusion,
55
restlessness, agitation, hallucinations, nightmares, vivid dreams,
hyperalgesia, allodynia, myoclonus, and seizures. In addition,
dehydration can also result in dry, cracked lips and viscous
secretions.
Consider parenteral hydration as a therapeutic option aimed at
achieving a specified clinical goal. The resolution of symptoms
may depend in part on the volume or rate of parenteral fluids
administered. For example, if:
• Hydration is ineffective in achieving the desired goal within a
pre-established time frame, it is reasonable to reassess the rate
of infusion or consider discontinuing it.
• The desired goal is achieved and the person is able to drink
fluids, hydration may be discontinued or the volume reduced.
• The desired goal is achieved and the person is unable to drink
fluids, it may be necessary to continue with hydration. • The hydration seems to be causing more distress (e.g. increased
respiratory secretions), it is reasonable to re-evaluate the rate or
discontinue it completely.
39. When is it not beneficial to hydrate?
In general, hydration may not be recommended or useful in the
following situations:
• The person is able to maintain an adequate oral intake (usually
one litre per day is sufficient).
• The person is unable to drink, or has limited oral intake and
is not taking medications that are eliminated by the kidneys,
and/or is not experiencing distressing symptoms. If a person is
unable to drink or has limited oral intake, consider a reduction
in the dose of medications (e.g. opioids may prevent metabolite
accumulation caused by impaired renal function).
• Supportive interventions (e.g. ice chips, artificial saliva or lip
lubricants) are effective for symptom relief.
• The person and/or family do not wish to have hydration.
56
40. Is hydration appropriate for a person who has
edema?
A person with edema has excessive fluid in the interstitial spaces
but may have inadequate fluid in the intravascular and/or
intracellular spaces and therefore, may be in need of additional
fluids. Edema, especially of the lower extremities, is not a good
indicator of hydration status.
Edema can be a concern in the terminal phase of many diseases,
i.e. up to last couple of months. Common causes of edema can be
attributed to:
• Reduced physical function,
• Low serum albumin related to cachexia, which causes a
decrease in vascular osmotic pressure and a shift of fluid from
the vascular system into the interstitial tissues, or
• Tumour blockage in the venous or lymphatic systems which
causes an increase in back pressure and subsequent movement
of fluid into the interstitial tissues.
41. How can hydration be maintained?
Oral intake is the preferred route as long as it is well tolerated.
Popsicles, frozen yogurt, ice chips made from water or fruit juice,
and commercial instant breakfast drinks or milkshakes can be
offered. Bendable straws and sports bottles can also be helpful.
Hypodermoclysis (HDC), the subcutaneous administration of fluid
via continuous, intermittent or bolus infusion is possible when
the oral route cannot be used. Subcutaneous fluids may offer
advantages over the intravenous route unless venous access has
already been established.
Intravenous infusions may be utilized in an in-person or
community setting if central venous access is already in place.
Advantages of hypodermoclysis over intravenous include:
• Easier access,
• Increased comfort,
57
•
•
•
•
Decreased cost,
Decreased risk of systemic infection and other complications,
Increased ease and safety to administer at home, and
Increased patency of administration site (HDC sites can last up
to 7 days or longer).
Clinical Tip
For specific guidelines on how to initiate parenteral
hydration, refer to your agency policy.
Clinical Tip
If the individual is too weak to sip fluids up the entire length
of the straw, cut the straw in half.
References
Downing, M. G., & Wainwright, W. (2006). Artificial hydration and
hypodermoclysis guideline. Medical Care of the Dying, (4th ed.,
pp. 311-317). Victoria, BC: Friesens Corporation, Canada.
Ferrell, B. R., & Coyle, N. (2010). Oxford textbook of palliative
nursing, (3rd ed.). New York: Oxford University Press.
Hodgkinson, B., Evans, D., & Wood, J. (2003). Maintaining oral
hydration in older adults: A systematic review. International
Journal of Nursing Practice, 9(3):S19-S28.
MacMillan, K., Peden, J., Hopkinson, J., & Hycha, D. (2000). A
caregiver’s guide: A handbook about end of life care. The
Palliative Care Association of Alberta and Military and Hospitaler
Order of St. Lazarus of Jerusalem.
Sarhill, N., Walsh, D., Nelson, K., & Davis, M. (2001). Evaluation and
treatment of cancer-related fluid deficits: Volume depletion and
dehydration. Supportive Care in Cancer, 9(6):408-419.
58
Nausea and Vomiting
42. What are nausea and vomiting?
What are the causes?
Nausea is a subjective symptom involving an unpleasant feeling
experienced at the back of the throat and/or the stomach.
Vomiting is a mechanism whereby the body tries to purge itself
of noxious substances involving expulsion of gastric contents by
forceful contractions of abdominal muscles. Vomiting may or may
not be associated with nausea.
Nausea and vomiting are common at the end of life particularly
among persons with cancer, AIDS, renal and hepatic failure. These
symptoms are prevalent because they have multiple etiologies,
several of which may be present at the same time.
Causes
Chemical and/or mechanical
• Metabolic abnormalities (e.g. hypercalcemia, renal or hepatic
failure and/or electrolyte imbalance),
• Dehydration,
• Medication toxicity/side effects (e.g. opioids, NSAIDs, antibiotics,
selective serotonin reuptake inhibitors (SSRIs), chemotherapy,
anticholinergics and/or Digoxin),
• Decreased gastrointestinal motility (e.g. secondary to gastric
stasis, autonomic insufficiency or intra-abdominal disease),
• Constipation, obstipation or bowel obstruction,
• Gastrointestinal pathology (e.g. tumour, ascites, gastroesophageal reflux disease, esophagitis or gastritis, peptic
ulceration),
• Liver metastasis,
• Infection,
• Chronic cough,
• Retroperitoneal disease,
• Radiation therapy.
59
Central Nervous System (CNS)
Increased intracranial pressure secondary to:
• Tumour-induced brain and skull metastasis or leptomeningeal
disease
• Cerebral edema
• Cerebral infection
• Cerebral hemorrhage.
Vestibular
Movement – associated nausea/vomiting secondary to vestibular
disturbance caused by tumour or vestibular nerve invasion.
Psychological
• Anxiety
• Fear
• Anticipatory nausea
• Pain.
43. How are nausea and vomiting assessed?
Assessment
1. History
• Intensity: How severe is the nausea? 0-10 rating scale or
visual analogue scale such as that used in the ESAS-r
(see Appendix A).
• Onset: When did it start?
• Duration: How long has the problem existed? How long
does each episode of nausea and/or vomiting last?
• Frequency: How often does nausea and/or vomiting occur?
• Impact: How does the nausea/vomiting impact ability to
function and quality of life?
• Aggravation: What makes it worse?
• Alleviation: What makes it better?
• Associated symptoms: Are there other symptoms (e.g.
constipation)?
• Person’s perception: What is thought to be the cause of
nausea or vomiting?
• Environmental factors: What in the environment triggers
nausea or vomiting?
60
• Emesis: How much emesis is there? What does it look like
(colour, consistency)? What does it contain?
2. Physical assessment
• Abdominal assessment: inspect, auscultate, percuss and
palpate. Findings may include distention, ascites, abnormal
bowel sounds, flatus, masses and/or tenderness.
• Rectal exam: if constipation is suspected.
• Oral assessment: findings may include infection (e.g. oral
candida infection, stomatitis dryness, halitosis, poor oral
hygiene and/or ill-fitting dentures).
• Assess other systems as indicated (e.g. neurological for CNS
induced nausea).
3. Investigations
• Three views of the abdomen, electrolytes, renal and liver
function tests. Consider other tests as indicated by the
person’s history (e.g. flat plate of the abdomen to assess
fecal load or CT of the head to rule out metastasis).
44. What are the interventions to control nausea
and vomiting?
Treat reversible causes:
• Evacuate the bowels,
• Reassess medications,
• Correct metabolic imbalances,
• Consider oncologic options (e.g. chemotherapy, radiation
therapy and/or steroids),
• Consider paracentesis as it may provide relief of nausea
secondary to ascites,
• Treat esophagitis, gastritis, peptic ulceration,
• Rehydrate,
• Treat vestibular disturbances.
61
Pharmacological Interventions
The selection of an anti-emetic is guided by the etiology of the
nausea and the potential toxicities of the drug. When people have
advanced disease there are often multiple causes of nausea and
therefore multiple strategies are often needed.
• Metoclopramide (Maxeran®) 5-20mg PO/subcut/IV 4-6 times
daily and every 1-2 hours as needed, maximum daily dose
120mg in 24 hours. Metoclopramide can also be given in
continuous subcutaneous infusion of 60-120mg per day for
persistent nausea. Metoclopramide is the drug of choice for
mechanical and/or chemical causes of nausea because of its
anti-emetic effects on the gastrointestinal and chemoreceptor
trigger zone. Metoclopramide may be contraindicated if the
person has a complete bowel obstruction due to its prokinetic
effect.
• Dexamethasone (Decadron®) 4-20mg PO/subcut in one daily
dose or divided doses, taper to minimal effective dose as
soon as response observed. Dexamethasone may be added to
Metoclopramide if nausea persists. Dexamethasone is known
to reduce swelling and inflammation potentially contributing
to nausea; however, other mechanisms of action have been
suggested.
• Haloperidol (Haldol®) 0.5 -2mg PO/subcut every 4-12 hours
and 0.5-2mg every 1 hour as needed, maximum dose 20mg in
24 hours. Haloperidol is also effective for mechanical and/or
chemical causes of nausea and it may be used in the presence
of bowel obstruction due to its lack of prokinetic activity on the
gastrointestinal tract.
Nursing Alert
When using Metoclopramide and Haloperidol, monitor
for infrequent but possible extrapyramidal side effects, such
as restlessness, stiffness of the neck or jaw, tremours and/
or rigid muscles. There is evidence that prochlorperazine or
methotrimeprazine can also cause extrapyramidal side effects.
62
• Domperidone (Motilium®) 5-20mg PO four times daily and
5-10mg every hour as needed, maximum dose 120mg per day.
Domperidone is useful for its prokinetic effect.
• Ondansetron hydrochloride (Zofran®) or Granisetron
hydrochloride (Kytril®) 8mg PO/subcut every 8 hours,
maximum dose 24mg in 24 hours. These medications may
be especially helpful for chemotherapy induced nausea and
vomiting. Remember that this drug causes constipation.
• Prochlorperazine (Stemetil®) 2.5-10mg subcut every 4-8 hours,
maximum dose 40mg in 24 hours.
• Dimenhydrinate (Gravol®) 50-100mg PO/subcut every 4-6
hours, maximum dose 400mg in 24 hours.
• Methotrimeprazine (Nozinan®) 2.5mg to 25mg PO/subcut
every 4-6 hours, maximum dose 200mg in 24 hours.
Nursing Alert
Prochlorperazine, Dimenhydrinate, and Methotrimeprazine may
cause significant sedation. Their use as antiemetics in hospice
palliative care is infrequent.
• Cannabinoids (Dronabinol, Nabilone) dosages vary. Further
research is needed to determine the value of this drug group in
advanced disease.
• Octreotide (Sandostatin®) 50-200mcg subcut every 8 hours
reduces gastric secretions and potentially bowel wall edema.
• Hyoscine Butylbromide (Buscopan®) 10-20mg subcut every
4-8 hours and every hour as needed, maximum dose 120mg in
24 hours. Use as a last resort as it paralyzes the bowel.
Non-Pharmacological Interventions
•
•
•
•
Provide good oral hygiene.
Apply a cool damp cloth to forehead and nape of neck.
Manage associated symptoms (e.g. pain or constipation).
Minimize noxious stimuli including:
– Aromas in the hospital (remove the lid from the meal
tray outside the person’s room to allow some of the food
odour to dissipate, offer non-aromatic cold foods such as
sandwiches),
63
•
•
•
•
– Avoid foods that are greasy, spicy or excessively sweet,
– Avoid other smells (e.g. perfume, smoke),
– Eat in a pleasant environment.
Eat or drink small amounts often. Include foods such as
lemonade, juices, soft drinks, popsicles, sherbet, crackers,
pretzels, plain cookies, and toast. Avoid dehydration.
Position the person in an upright position after eating to
facilitate digestion.
Provide loose fitting clothing.
Consider complementary therapies such as relaxation, imagery,
acupressure, and acupuncture.
References
Alexander, C. (2001). Management of common symptoms in
terminally ill patients: Part I. Fatigue, anorexia, cachexia, nausea
and vomiting. American Family Physician, 64(5),
807-814.
Campbell, T., & Hately, J. (2000). The management of nausea and
vomiting in advanced cancer. International Journal of Palliative
Nursing, 6(1), 18-25.
Downing, M. G., & Wainwright, W. (2006). Nausea and vomiting.
Medical Care of the Dying (4th ed., pp. 317-333). Victoria, BC:
Friesens Corporation, Canada.
Ferrell, B. R., & Coyle, N. (2010). Oxford textbook of palliative
nursing, (3rd ed.). New York: Oxford University Press.
Parkman, H.P. (2002) New advances in the diagnosis and
management of nausea and vomiting. Case Manager, 13(2),
83-86.
Rhodes, V.A., & McDaniel, R.W. (2001). Nausea, vomiting, and
retching: Complex problems in palliative care. Cancer: A Cancer
Journal for Clinicians, 51(4), 232-248.
64
Delirium
45. What is delirium?
What are the causes of delirium?
Delirium is a cognitive impairment with a sudden onset and
fluctuating level of consciousness. Dementia is differentiated
from delirium in that dementia has a gradual onset, the person’s
level of consciousness is unimpaired, and it does not fluctuate. It
is important to distinguish delirium from dementia because the
diagnosis provides an indication of the likelihood of restoration of
cognitive function. Approximately 25-45% of episodes of delirium are
reversible, whereas dementia is usually chronic and irreversible. It is
possible for a person with delirium to have a preexisting dementia.
Hence, reversing the delirium in those people will not completely
restore cognitive function.
Features of delirium include disturbances in:
• Level of consciousness that ranges from hyperalert to somnolent,
• Attention with decreased ability to focus, sustain, or shift
attention,
• Cognition and/or perception including paranoia and
hallucinations,
• Sleep-wake cycle,
• Psychomotor behaviour with changes ranging from withdrawal to
agitation and
• Emotional state with manifestations such as anxiety, anger,
depression, apathy and/or irritability. Emotions are often labile.
There are three main types of delirium:
1. Hypoactive hypoalert is a calm somnolent state often
manifested when a person is actively dying or is associated with
dementia, depression, and somnolence. As long as it is not of
sudden onset and reversible causes have been ruled out, no
treatment is necessary. Attention to comfort is all that is required.
2. Hyperactive hypoalert (mixed) is a restless somnolent state;
however, the person can fluctuate between somnolence and
agitation.
65
3. Agitated or hyperactive hyperalert is an agitated, restless state
with sudden onset and a fluctuating level of consciousness that
may or may not include hallucinations, delusions, disorientation,
memory impairment, distractibility, day/night reversal,
inappropriate communication, incoherent speech, an increase
in psychomotor activity, anxiety and/or emotional lability. All of
these symptoms can result in obvious behavioural changes.
Causes
An acronym that may assist with identification of multifactorial
causes is “DELIRIUM”:
D – Drugs e.g. opioids, benzodiazepines, antidepressants,
nonsteriodal anti-inflammatory agents, ACE inhibitors,
Digoxin, anticholinergics and diuretics.
Dehydration.
E – ETOH (alcohol) and/or drug use, misuse or withdrawal.
L – Liver impairment.
I – Infection.
R – Respiratory impairment (e.g. hypoxemia).
I – Intracranial pathology (e.g. brain tumour or head injury).
U – Uremia (e.g., renal impairment).
M – Metabolic abnormalities (e.g. hypercalcemia or
hyponatremia).
Nursing Alert
Urinary retention and constipation do not cause delirium
but may exacerbate agitation in cognitively impaired
individuals.
66
46. How is delirium assessed?
Episodes of early delirium are easily missed. A comprehensive
assessment and ongoing reassessment of cognitive function is
therefore important.
Assessment
1. History – clarify the following with family and/or caregivers:
• Speed of onset,
• Timing of symptoms (e.g. when is the delirium better and/or
worse),
• Changes in behaviour, level of consciousness, attention, sleep
wake cycles, cognition/perception, and emotions,
• Alleviating and aggravating factors,
• Effect on daily functioning and activities of daily living, history
of drug or alcohol use.
Review medications to identify potential causes.
2. Physical Examination – assess for signs and symptoms of
possible causes (e.g. opioid toxicity, infection, dehydration,
metabolic abnormalities, and/or hypoxemia).
3. Investigations – review screening blood work and other
investigations to help identify cause(s) (e.g. CBC, blood culture,
electrolytes, calcium and albumin, liver and renal function tests,
metabolic screening, urinalysis, CT of head, chest x-ray and/or
oxygen saturation). Use a screening tool [e.g. Molloy Standardized
Mini-Mental State Examination (SMMSE), Confusion Assessment
Method (CAM) and Confusion Rating Scale (CRS)] to help detect
and monitor delirium.
Nursing Alert
Orientation questions (to the person, place, and time) alone
do not provide an accurate assessment of a person’s cognitive
status. To normalize and reduce stigma associated with the use of
any screening tool for cognitive impairment, provide the following
type of explanation, “Illnesses and medications can affect the way
your mind works and interfere with your memory, concentration,
and ability to think clearly. I have a set of questions I ask all people
to see if these problems are occurring and to monitor changes over
time. If you are experiencing these kinds of problems, I hope to find
ways to improve things for you. Is it okay if I ask you the questions?”
67
47. What are the interventions for delirium?
Non-Pharmacologic Interventions
• Surround the person with familiar objects and people including
family members and consistent caregivers if possible.
• Be calm and respectful.
• Provide structure and routine with simple explanations.
• Provide a quiet, well-lit room, night light, visible clock, and
calendar.
• Do not try to re-orientate agitated persons or correct them, as
this tends to increase agitation.
Identify and treat reversible causes including:
• Infection (e.g. antibiotics),
• Opioid neurotoxicity (e.g. hydration and opioid rotation),
• Cerebral tumour (e.g. steroids and/or radiation therapy),
• Metabolic abnormalities (e.g. correct imbalances), and/or
• Medications (e.g. change or discontinue as indicated)
Pharmacological Interventions
If the person is agitated, control the agitation as follows:
Haloperidol (Haldol®) 0.5-2mg PO/subcut every 4-6 hours and
every hour as needed, titrate upward to maximum dose of 20mg
in 24 hours. Haloperidol has antipsychotic properties effective for
controlling hallucinations, restlessness, and agitation, and for this
reason it is the drug of choice.
Methotrimeprazine (Nozinan®) 2.5mg to 25mg PO/subcut every
8-12 hours and every hour as needed, maximum dose 200mg in
24 hours. Methotrimeprazine is a sedating neuroleptic that can be
used if there is no improvement (after 36-48 hours) after optimal
titration of Haloperidol.
Nursing Alert
In rare instances of agitated delirium intractable to all
measures, consider palliative sedation (See Question 76).
68
Lorazepam (Ativan®) Some centres use Lorazepam as an infusion.
Midazolam (Versed®) is a quick acting benzodiazepine that can be
used to produce sedation for cases of intractable agitated delirium.
A common starting dose is 1mg per hour via continuous subcut/IV
infusion. Titrate upward to achieve the desired level of sedation that
relieves the distress of intractable delirium. Midazolam 2.5-5.0mg
subcut may be given as a loading dose while the infusion is being
prepared (see Question 76 on Palliative Sedation).
Nursing Alert
Any of these medications may have a paradoxical effect
and worsen the delirium. If this occurs, refer to a palliative
care specialist.
48. What are the interventions for supporting
family when a person is delirious?
Family Counselling
It can be very distressing for family members to witness hyperactive
delirium. It is important to acknowledge the loss experienced by
the family as they struggle to cope with someone who has changed
dramatically.
The following explanations may help the family cope:
• Symptoms of delirium such as moaning and agitation are an
indication of brain malfunction and not an expression of pain or
suffering.
• If the person had no pain or the pain control was good before
the onset of delirium, it is likely that the person’s behaviour is
not due to increased pain.
• Increasing the dose of opioids can worsen the agitation and
potentially escalate distressing toxic side effects.
• Medications are available for treating the symptoms. The goal of
treatment is comfort.
• People who recover usually have little or no recollection of this
symptom after the episode of agitated delirium resolves.
69
• The person is not in control of what he or she is doing or saying.
• The person may be comforted by having family members
present at all times. However, because it can be exhausting to
be with a hyperactive delirious person, it may be advisable for
the family to take turns, if possible, so they can maintain their
own rest and well-being.
• Attempt to provide a quiet, restful, calm environment that
minimizes sensory stimulation to help reduce the person’s
agitation.
Nursing Alert
Misinterpretation of the symptoms of agitated delirium (e.g.
restlessness, grimacing, and/or moaning as uncontrolled
pain) and the consequent administration of more opioids
can result in aggravation of the agitation and possibly
contribute to opioid toxicity. Advise family that moaning and/or
agitation may be due to confusion and not necessarily pain.
References
Breitbart, W., & Cohen, K. (2000). Delirium in the terminally ill. In
H.M. Chochinov and W. Breitbart (Eds.), Handbook of psychiatry
in palliative medicine (pp. 75-90). New York, NY: Oxford
University Press.
Brown, S., & Degner, L. F. (2001). Delirium in the terminallyill cancer patient: Aetiology, symptoms and management.
International Journal of Palliative Nursing, 7(6), 266-268,
270-272.
Lawlor, P., Fainsinger, R., & Bruera, E. (2001). Delirium at the end of
life: Critical issues in clinical practice and research. JAMA, 284,
2427-2429.
Friedlander, M.M., Brayman, Y., & Breitbart, W. S. (2004). Delirium
in palliative care. Oncology (Williston.Park), 18, 1541-1550.
Gaudreau, J., Gagnon, P., Harel, F., Trembley, A., & Roy, M. (2005,
April). Fast, systematic, and continuous delirium assessment
in hospitalized patients: The nursing delirium screening scale.
Journal of Pain and Symptom Management 29(4), 368-375.
70
Gagnon, P., Allard, P., Masse, B., & DeSerres, M. (2000). Delirium
in terminal cancer: A prospective study using daily screening,
early diagnosis, and continuous monitoring. Journal of Pain and
Symptom Management, 19(6), 412-426.
Grealish, L. (2000). Mini-Mental State Questionnaire: Problems
with its use in palliative care. International Journal of Palliative
Nursing, 6(6), 298-302.
Dyspnea
49. What is dyspnea?
What are the causes of dyspnea?
Dyspnea is a subjective discomfort related to breathing involving
the perception of breathlessness and the person’s reaction to it.
Dyspnea is not the same as tachypnea or hypoxia. A person’s
expression of dyspnea may not necessarily correlate with his
or her respiratory rate or oxygen saturation. Breathing can be
compromised by problems with inhalation, ventilation, perfusion,
transportation, diffusion, utilization, and/or metabolism. Dyspnea
can be a very distressing symptom for the ill person and his/her
family.
Causes
The causes of dyspnea can be multifactorial including any of the
following:
Pulmonary causes
• Obstruction (e.g. tumour blockage, COPD, emphysema, or
chronic bronchitis),
• Restriction (e.g. pulmonary fibrosis),
• Consolidation of lung tissue (e.g. pulmonary parenchymal
lesion, pneumonia or cystic fibrosis),
• Collapsed lung or atelectasis,
• Pleural effusion(s),
• Pleural-based tumour,
• Lymphangitic carcinomatosis,
71
• Lung damage secondary to treatment (e.g. chemotherapy or
radiation therapy),
• Lobectomy or pneumonectomy.
Cardiovascular causes
• Obstruction of pulmonary blood vessels (e.g. pulmonary
embolus, pulmonary edema or superior vena cava syndrome),
• Pericardial effusion,
• Anemia,
• Heart failure,
• Cardiomyopathy.
Other causes
• Myopathy (e.g. multiple sclerosis, muscular dystrophy, or
amyotrophic lateral sclerosis),
• Anorexia cachexia syndrome (e.g. persons with advanced
cancer, renal or cardiac failure, or AIDs),
• Elevated diaphragm (e.g. secondary to ascites, liver metastases,
or a collapsed lung),
• Emotional distress (e.g. anxiety, panic attacks, and/or
depression).
50. How is dyspnea assessed?
Assessment
1. History
Ask the person the following questions:
– Intensity: How severe is the shortness of breath? Use a 0-10
rating scale or visual analogue scale, such as that used in
the ESAS-r (see Appendix A). How distressing is it at rest? At
worst? At best?
– Quality: Describe how it feels (e.g. is it tightness in the chest,
not getting enough air like suffocating or drowning)?
– Onset: When did the breathlessness start? Is it related to
activity?
– Duration: When did the dyspnea start? How long does each
episode of breathlessness last?
– Frequency: How often is shortness of breath experienced?
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– Aggravation: What makes it worse? What activities cause
shortness of breath?
– Alleviation: What makes it better? How is it managed?
– Impact: Is there suffering when breathing? How has the
breathlessness affected the ability to function? Quality of life?
2. Physical assessment: Identify objective signs of respiratory
impairment. Although they are not necessarily indicative of
dyspnea, they may help identify the etiology. Observe for the
following:
– Signs including increased respiratory rate, respiratory pattern
(abdominal or apical chest movement), cyanosis (central
and/or peripheral), restlessness, facial expression, nasal
flaring, use of accessory muscles, intercostal/suprasternal/
supraclavicular indrawing, tracheal tug, an inability to
complete full sentences, gasping during eating and possible
gagging, coughing and/or expectorating.
– Palpate bony structures to detect bone metastasis or
fractures, pain over chest wall, equal chest wall movement
bilaterally.
– Percuss lung fields to detect consolidation, effusion, or
collapse.
– Auscultate to assess for alterations in air entry and/or
adventitious breath sounds (e.g. crackles, wheezes, and/or
rubs).
3. Investigations: Oxygen saturation, blood work (e.g. hemoglobin,
WBC), diagnostic procedures (e.g. chest x-ray, CT of chest, ECG,
VQ scan, ABGs, and pulmonary function tests).
73
51. What are the interventions for dyspnea?
Non-Pharmacological Interventions
• Provide reassurance (e.g. calm environment and information).
• Allow person to assume any body position which provides relief,
usually leaning forward sitting with arms supported on a table.
High Fowler’s position works well for fatigued or unconscious
persons (be sure elbows are supported).
• Allow person to breathe as quickly as they feel they need
to through mouth or nose, regardless of presence of
supplementary oxygen. Once their breathing begins to slow
down and becomes more relaxed, encourage diaphragmatic
breathing and/or pursed lip breathing.
• Increase ventilation (e.g. a fan blowing across the face or over a
bowl of ice, open a window)
• Provide relaxation therapy, massage to upper back and arms, or
distraction.
• Provide oxygen therapy if the person is hypoxemic or has a low
oxygen saturation (i.e. titrate oxygen to relieve symptoms as
oppposed to achieving a particular oxygen saturation level). Be
cautious of providing high flow oxygen to people with chronic
obstructive pulmonary disease (COPD) as the drive to breathe
may depend on their carbon dioxide level.
• Provide cool mist humidity.
• Maintain good oral hygiene.
• Teach energy conservation strategies (See Appendix E).
• Offer chest physiotherapy – may be useful in persons with chest
congestion to help mobilize sputum. Use caution in persons
with compromised bone structure (e.g. bone metastases or
osteoporosis).
• Consider radiation therapy – may help relieve obstruction or
inflammation secondary to tumour.
• Transfuse packed red blood cells – may alleviate anemia.
• Consider thoracentesis/pleurodesis – may reduce the work of
breathing secondary to pleural effusion(s).
74
Nursing Alert
Suctioning has a limited role and potential benefits need
to be weighed against the risks (e.g. stimulating further
secretions).
Pharmacological Interventions
The following interventions target the cause of dyspnea:
• Antibiotics may relieve symptoms associated with chest
infection.
• Bronchodilators (e.g. Salbutamol sulphate (Ventolin ®)
2.5-5mg via nebulization every 4 hours as needed, maximum
dose 6 inhalations in 24 hours). May alleviate obstructive
bronchoconstriction secondary to COPD or asthma.
• Cough suppressants (e.g. Dextromethorphan 10–20mg PO
every 4 hours, maximum dose 120mg in 24 hours; Codeine 1560mg PO/subcut every 4 hours; or Morphine 1.5-5mg PO/subcut
every 4 hours as needed). Cough suppressants are useful for
relief of a persistent dry cough.
• Diuretics are useful if dyspnea is caused by pulmonary or
hepatic congestion. However, diuretics must be used cautiously
in most palliative persons as the risk of dehydration may
outweigh any potential benefit.
• Expectorants (e.g. Guanifesin 200-400mg PO every 4 hours,
maximum dose 2400mg in 24 hours). Expectorants are useful
for dyspnea associated with a productive cough.
• Steroids (e.g. Dexamethasone (Decadron ®) 4-10mg PO/subcut
1 to 4 times daily or Prednisone 10-40mg PO daily). Steroids
may prove useful when dyspnea is secondary to obstruction
(e.g. superior vena cava syndrome, radiation therapy fibrosis,
lymphangitic carcinomatosis, or COPD exacerbation).
• Chemotherapy may help relieve dyspnea associated with
obstruction or inflammation by shrinking tumour bulk.
• Anticoagulants may reduce dyspnea if caused by pulmonary
emboli.
75
Symptomatic Pharmacological Interventions
• Opioids may help decrease the perception of breathlessness. If
the person is receiving opioids regularly for pain, breakthrough
doses of the same opioid can be given for dyspnea. In the
absence of opioids for analgesia, Morphine 2-10mg PO or 1-5mg
subcut every hour as needed may be ordered for dyspnea.
Titrate to effect.
For the opioid naïve or frail person, opioids should be started at
a lower dose and titrated based on response. If 3 or more doses
are required in a 24-hour period, a regular dose around the
clock (ATC) is recommended (see Question 6). If a more rapid
onset of action is required, use Fentanyl SL/subcut 12.5 - 25 mcg
every hour as needed. This opioid can ease dyspnea quickly as it
acts within 5 minutes to reduce the perception of dyspnea and is
metabolized within 30 minutes. Fentanyl is useful if given prior
to activity-related dyspnea or for breakthrough dyspnea. Avoid
nebulized opioids as research has not proven effect.
• Anxiolytics are rarely needed for dyspnea if the underlying
cause has been treated. Many times the cause cannot be
treated, thus an anxiolytic can be effective when used in
conjunction with an opioid to reduce dyspnea. With severe
dyspnea, methotrimeprazine (Nozinan®) may be effective.
If dyspnea continues or is considered intractable, palliative
sedation may be appropriate (See Question 76).
Nursing Alert
When a person has become unresponsive and appears to
be actively dying, it is appropriate to speak to family about
discontinuing life-prolonging measures, including oxygen.
76
References
Galbraith, S., Fagan, P., Perkins, P., Lynch, A., Booth, S.
(2010). Does the use of a handheld fan improve chronic
dyspnea? A randomized, controlled crossover trial.
Journal of Pain and Symptom Management, 39(5), 831-838.
Gauna, A. A., Kang, S. K., Triano, M. L., Swatko, E. R., & Vanston,
V. J. (2008). Oral transmucosal fentanyl citrate for dyspnea in
terminally ill patients: An observational case series. Journal of
Palliative Medicine, 11(4), 643-648.
Jennings, A. L., Davies, A. N., Higgins, J. P. T., & Broadley, K. (2001).
Opioids for the palliation of breathlessness in terminal illness.
The Cochrane Database of Systemic Research.
Payne, D. K., & Massie, M. J. (2000) Anxiety in palliative care. In H.
M. Chochinov and W. Breitbart (Eds.), Handbook of Psychiatry
in Palliative Medicine (pp. 63-74) New York: NY.
Pinna, M., Vargas, R., Moralo, M., Correas, M., & Blanco, G. (2009).
Dyspnea - a bad prognosis symptom at the end of life. American
Journal of Hospice and Palliative Care, 26(2), 89-97.
Rocker, G. M., Sinuff, T., Horton, R., & Hernandez, P. (2010).
Advanced chronic obstructive pulmonary disease: Innovative
approaches to palliation. Journal of Palliative Medicine, 10(3),
783-797.
Edema, Ascites, and Lymphedema
52. What are edema, ascites, and lymphedema?
What are the causes?
Edema, ascites, and lymphedema are abnormal accumulations of
excess fluid within soft tissue or cavities secondary to obstruction,
loss of protein, and/or organ failure (e.g. hepatic, renal, and/or
cardiac failure). In the final stage of an illness, a large percentage of
people will experience problems associated with fluid accumulation.
Edema is an accumulation of fluid within soft tissue that typically
presents in dependent areas (e.g. lower extremities in mobile
persons, the sacrum, and/or scrotum in bed-ridden persons).
77
The causes of edema are multifactorial including loss of protein,
compression of vascular or lymphatic systems, and organ failure.
There is a risk of infection because of the composition and stagnant
nature of the fluid.
Lymphedema is an accumulation of fluid within soft tissue
characteristically found in limbs affected by disease and/or
treatment, and is not necessarily dependent on position. Prevention
is vital. Although the resolution of lymphedema is possible, once
it occurs, it tends to be a chronic condition. If detected early, it is
possible to reverse the progression of lymphedema. Clinical signs
are discomfort, heaviness and weakness of limbs, a sensation of
tightness, and lack of flexibility. The cause of lymphedema is usually
multifactorial; any of the following may obstruct or interrupt the
lymph channels:
• Surgery (e.g. node dissection),
• Radiation therapy,
• Infection and/or
• Obstruction secondary to tumour or ascites.
Ascites is the accumulation of excess fluid within the abdominal
cavity. Ascites can be caused by tumour cells in the abdomen,
tumour invasion resulting in compression of the portal and venous
lymphatic systems, decreased protein in the bloodstream, liver
disease, or congestive heart failure. Severe ascites is associated with
poor prognosis.
53. How are edema, ascites, and lymphedema
assessed?
Assessment
Assessment of edema, ascites, and lymphedema may include any
of the following:
1. History – onset, severity, alleviating and aggravating factors,
associated symptoms (e.g. dyspnea, constipation, anorexia, early
satiety, nausea, vomiting or esophageal reflux), significance to
person including concerns about body image and sexuality,
altered functional abilities, and psychological concerns such as
depression and social isolation.
78
2. Physical Examination
− Observe the affected area for alterations in skin and tissue
including skin integrity, colour and moisture, signs of
infection, distortion of shape, weight gain, and fit of clothing.
− Assess temperature. Risk of infection especially with
repeated paracentesis is high.
− Inspect the abdomen for bloating, distension or bulging
flanks. Auscultate for bowel sounds. Percuss to determine
the presence and volume of fluid. With ascites, there must
be at least 1500 mls of fluid before dullness occurs with
percussion. Palpate for abdominal tenderness.
− Test for function, range of motion, and mobility.
3. Investigations – CBC and differential, protein and albumin (prealbumin), cardiac and/or liver enzymes, renal function, total
bilirubin, chest x-ray, venous doppler, abdominal ultrasound,
and/or CT scans.
54. What are the interventions for edema, ascites,
and lymphedema?
Interventions for edema, ascites, and lymphedema may include any
of the following:
General Interventions
• Determine goals of care with the person and family.
• Educate the person and family: explain diagnosis, etiology, and
self-care activities.
• Provide supportive care and counselling.
• Make referrals to rehabilitation therapists.
• Provide skin care and attend to positioning.
• Reduce the risk of falls as fluid shifts and excessive weight
associated with fluid accumulation may cause orthostatic
hypotension, as well as alter the person’s centre of gravity.
• Avoid insertion of IV or subcutaneous devices in the affected
limb or an edematous abdomen.
• Avoid blood pressure measurement on affected limbs.
• Avoid diuretics as they are often of little value in the treatment
of fluid accumulation (e.g. ineffective in shifting fluids in the
79
presence of hypoproteinemia and/or obstruction). A trial of
diuretic may be useful in fluid accumulation due to organ failure
(e.g. cardiac and portal hypertension). If diuretics are indicated,
suggest Spironolactone 25-50mg PO daily in divided doses
titrating up to 200mg daily depending on the person’s response
and renal function.
Edema Interventions
• Restrict fluid and sodium if appropriate [e.g. in persons with
cardiac related edema or syndrome of inappropriate antidiuretic
hormone secretion (SIADH)].
• Elevate limbs.
• Use compression stockings (up to 30mmHg for mild edema).
Greater compression requires appropriate assessment.
Compression stockings and bandages should be discontinued in
the event of cellulitis. Tubular supports or antiembolism stockings
are too weak and may roll down producing a tourniquet effect.
• Mobilize if possible, including passive range of motion and ankle
pumps while seated or lying in bed.
Lymphedema Interventions
• Use of exercise, vibration, massage, manual lymphatic drainage,
and/or use of intermittent compression pump (Lymphapress).
Intermittent compression pumps may cause rapid diffusion of
fluid elsewhere in the body and in conjunction to the pump,
the patient will still need to use a compression garment. Pump
use may not benefit the person any more than the use of a
compression garment alone, and is contraindicated in the
presence of infection or thrombosis.
• Use a compression garment, a low pressure sleeve, or
multilayered compression bandages. Compression bandaging is
strongly recommended in the presence of lymphorrhea. Multilayer lymphedema bandaging (MLLB) should not be used in
patients with severe arterial insufficiency (ABI <0.5), uncontrolled
heart failure, and/or severe peripheral neuropathy.
• Provide adequate pain management.
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Nursing Alert
Long term neglected edema such as with venous
insufficiency can develop into chronic lymphedema.
Ascites Interventions
• Manage related symptoms such as constipation (See Question
31), nausea (See Question 44) and/or dyspnea (See Question
51).
• Provide paracentesis for recurrent ascites. Despite the potential
for fluid volume depletion, protein loss, and the possibility of
rapid fluid re-accumulation, symptomatic relief takes priority.
Persons who require frequent paracentesis may benefit from the
insertion of a permanent catheter.
References
Dean, M., Harris, J., Regnard, C., & Hockley, J. (2006). Symptom
relief in palliative care. United Kingdom: Radcliff Publishing Ltd.
Economou, D. (2010) Bowel management: Constipation, diarrhea,
obstruction and ascites. In B. Ferrell & N. Coyle (Eds.), Oxford
textbook of palliative nursing (3rd edition, pp. 269-289). New
York, NY: Oxford University Press.
Fu, M., & Smith, J. (2010). Lymphedema management. In B. Ferrell
& N. Coyle (Eds.), Oxford textbook of palliative nursing (3rd
edition, pp. 341-358). New York, NY: Oxford University Press.
Hospital Pharmacists’ Special Interest Group in Palliative Care.
(2009). Care beyond cure: Management of pain and other
symptoms (4th ed.) Ottawa, Canada: Canadian Society of
Hospital Pharmacists.
Mason, W. (2000).Exploring rehabilitation within lymphedema
management. International Journal of Palliative Nursing, 6(6),
265-273.
McNamara, P. (2000). Paracentesis – An effective method of
symptom control in the palliative care setting? Palliative
Medicine, 14, 62-64.
Pereira, J. L. & Associates. (2008). The Pallium palliative
pocketbook: A peer-reviewed, referenced resource. (1st Cdn.
Ed.) Edmonton, Canada: The Pallium Project.
Smith, S. (2000). Hospice concept: A guide to palliative care in
terminal illness. Champaign, Il: Research Press.
81
Care of the Integument
55. Should bed-bound people be repositioned
regularly?
Yes. Repositioning and providing skin care remain important
comfort measures throughout the last days, or even hours, of life.
A person with advanced disease, limited mobility, and cachexia is
at risk for developing, or may have already developed, bedsores,
particularly if he or she is immobile. Repositioning reduces this risk,
lessens the discomfort of bedsores, and can also help to prevent
stiff joints and muscles.
Identify persons at risk for pressure ulcers by using a risk
assessment tool (e.g. Braden or Norton Scale for predicting
pressure sore risk). Implement strategies to reduce this risk (e.g.
use pressure relieving surfaces for beds and chairs, manage
incontinence, avoid infection, and educate caregivers).
Interventions
• Reposition the person very gently, a few inches at a time. A
draw sheet under a bed-bound person can be used to turn or
lift. With the person lying on his or her back, “cradle” them
by placing pillows under the draw sheet along each side, thus
providing just enough lift to keep the bones of the spine and
hips from resting fully on the bed.
• Administering regular or breakthrough analgesic before
repositioning may minimize discomfort on movement.
• Explore the use of specialty mattresses and/or beds that
may decrease the potential for skin breakdown and reduce
discomfort with movement.
Nursing Alert
If repositioning causes a person pain, consider giving pain
medications prior to turning.
82
56. What is pruritis? What causes it?
Pruritis is the cutaneous sensation of itchiness that can be fleeting,
intermittent, or constant. It can be multifactorial.
Causes
Dermatological
• Psoriasis,
• Infectious processes (e.g. mycosis fungoides or parasitic
infections).
Systemic
• Biliary and/or hepatic diseases (e.g. primary biliary cirrhosis or
extrahepatic biliary obstruction, resulting in deposition of bile
salts in the skin),
• Renal diseases (e.g. chronic or end-stage renal disease, resulting
in deposition of urea in the skin),
• Hematologic diseases (e.g. lymphoma or multiple myeloma),
• Infectious processes (e.g. HIV or syphilis),
• Endocrine or metabolic processes (e.g. diabetes, thyroid
insufficiency or vitamin and mineral deficiency),
• Neurological diseases (e.g. herpes zoster or peripheral
neuropathies),
• Connective tissue disorders (e.g. lupus or graft versus host
disease).
Iatrogenic
• Medication side effects (e.g. opioids, antibiotics, allergies),
• Treatment side effects (e.g. radiation therapy).
Psychological
• Anxiety or nervousness.
83
57. How is pruritis assessed?
What are the interventions?
Assessment
1. History – location, quality, intensity, timing (onset, duration,
and constancy), associated symptoms, aggravating, alleviating
and environmental factors (e.g. use of new products), and
significance to person. Medication and allergy review.
2. Physical Examination – assess affected areas for the presence
and distribution of rashes, skin integrity, infection, bleeding,
serous fluid leakage, and colour changes.
3. Investigations – CBC and differential; total bilirubin; blood
glucose; renal, hepatic and thyroid function tests; fungal,
bacterial and viral swabs; and possibly a skin biopsy.
Non-Pharmacological Interventions
• Maintain good hygiene as perspiration and accumulation of
waste on the skin increases itchiness. Tepid baths are usually
best tolerated; avoid soap and other drying agents.
• Dress in loose fitting, cotton clothing.
• Maintain cooler rather than warmer room temperature.
• Apply oatmeal-colloidal lotions (e.g. Aveeno®).
• Apply moisturizers (e.g. Menthol in aqueous cream or Sarna
cream).
• Use TENS for neurological causes.
Pharmacological Interventions
• Antihistamines such as Cetrizine (Reactine®) 5-10mg PO every
day, maximum dose is 20mg in 24 hours; Diphenhydramine
(Benadryl®) 25-50mg PO every 4-6 hours, maximum dose is
400mg in 24 hours; or Hydroxyzine (Atarax®) 10-25mg PO 3-4
times daily, maximum dose 100mg in 24 hours. Note Benadryl ®
and Atarax ® are more sedating.
• Topical or systemic steroids such as Dexamethasone
(Decadron®) 2-4mg PO/subcut daily if pruritis is intractable.
• Doxepin (Sinequan®) 10-30mg PO at bedtime. Doxepin topical
may be applied thinly 4 times daily for uremic pruritis.
84
• Cholestyramine (Questran®) 4 grams PO daily up to 1- 4 times
daily (titrate), maximum dose is 24 grams in 24 hours. May
relieve pruritus secondary to partial biliary obstruction or
uremia.
• Erythropoietin, Ultraviolet B phototherapy, or Gabapentin
(Neurontin®) 125-300mg PO daily. Typically given post-dialysis
for uremic pruritus.
• Ondansetron has been shown to be very effective when given IV
followed by PO.
• Stent insertion with internal or external drainage and/or
Dexamethasone (Decadron®) 12-16mg PO/subcut daily for
pruritus due to biliary obstruction.
• Other disease-specific drugs and therapies for pruritus caused
by specific systemic or dermatologic diseases e.g. treatment for
lymphoma or psoriasis.
• Discontinuation or adjustment of medications for pruritus
caused by medications.
58. What is a malignant wound?
How is it assessed?
A malignant wound is a break in the epidermal integrity caused by
the infiltration of malignant cells. Persons with cutaneous lesions
are at highest risk for developing malignant wounds. Radiation
therapy, surgery, and chemotherapy can also contribute to
malignant wound formation.
Assessment
1. History – location, quality, radiation therapy, severity, timing
(onset, duration, constancy), associated symptoms, aggravating
and alleviating factors in relation to wound pain/discomfort;
significance of wound and wound discomfort to person,
therapies/treatments used in past and presently as well as their
effectiveness. Complete a review of medications.
2. Physical Examination – assess the location, size and depth of
the wound, condition of surrounding skin, appearance of the
wound bed and margins, the type of tissue present (necrotic,
85
sloughing, granulating, epithelializing), amount and quality of
drainage, episodes of bleeding, signs of infection, presence of
odour, and presence of subcutaneous masses.
3. Investigations – CBC and differential, swabs for culture and
sensitivity, blood culture, and possibly a biopsy.
Nursing Alert
A malignant wound can change rapidly. Regular
assessment using valid and reliable tools is therefore
essential. Consider a referral to an Enterostomal Therapist or a
nurse specializing in wound management.
59. What are the interventions for a malignant
wound?
Interventions
• Treat infection with systemic antibiotics. • The goal in malignant wound care is to minimize the associated
symptoms including: pain, odour, exudate, and/or bleeding. The
goal is not necessarily to heal the wound.
− Managing the individual’s pain related to the wound and
during dressing changes is very important. Since the pain
may be deep in nature or neuropathic, it should be managed
by systemic therapy. However, procedural pain caused by
dressing changes may require additional treatment of mixing
an opioid analgesic into a topical gel.
− Metronidazole 0.75% gel has been shown to be very
effective in controlling odour caused by anaerobic bacteria
when applied in a thin layer to the wound. Alternatively,
a solution made from crushed metronidazole tablets
and sterile water (e.g. 0.5% solution/5mg/mL or 1%
solution10mg/mL) can be used to irrigate the wound, or to
soak gauze to be placed on or packed into the wound cavity.
− Managing exudates and controlling bleeding is critical in
caring for these wounds, and can be achieved through the
use of specialized wound products.
86
• Consider radiation therapy to reduce tumour bulk and/or stop
bleeding.
• Avoid commercial deodorizers. Essential oils such as oil of clove
and environmental filters may provide some odour control.
Odour absorbing dressings (e.g. charcoal), as well as odour
absorbing materials (e.g. pumice stones or cat litter) placed in
the room may also be effective in reducing odour.
• Emotional support to the person and his or her caregiver is
vital as the impact of odour and pain can interfere with the selfesteem of the person and his or her relationships.
Nursing Alert
Refer to your organization’s procedures and policies for site
specific interventions for wound care.
References
Chaplin, J. (2004). Wound management in palliative care. Nursing
Standard, 19(1), 39-42.
Naylor, W. (2003). Palliative management of fungating wounds.
European Journal of Palliative Care, 10(3), 95
Ferrell, B. R., & Coyle, N. (2010). Oxford textbook of palliative
nursing, (3rd ed.). New York: Oxford University Press.
87
Oral Conditions
60. What contributes to taste changes?
What are the dietary interventions?
Changes in taste may result from disease, malnutrition
(e.g. protein, vitamins, or zinc deficiencies), and/or mouth
complications (e.g. candidiasis, xerostomia, neurological damage
dental pathology, medications, chemoradiotherapy, or surgical
interventions).
Dietary Interventions
Suggestions for changes in taste:
• Try foods that leave their own taste (e.g. fresh fruit and mints).
• Add spices or sauces to enhance the food flavour if taste
sensation is decreased.
• Experiment with tart foods such as citrus juices, lemonade,
cranberry juice, and/or pickles.
61. What are xerostomia (dry mouth) and
stomatitis (sore mouth)? What are the causes?
Xerostomia is the subjective feeling of dryness of the mouth, lips,
gums, tongue, and/or palate dryness. If these symptoms are left
untreated, xerostomia may lead to stomatitis.
Stomatitis is the inflammation of the mouth characterized by red,
shiny, and edematous gums, tongue, and palate. Advanced stages
of stomatitis are frequently characterized by shallow ulcerative
lesions with white plaques.
Predisposing factors of xerostomia and stomatitis include:
• Decrease in saliva.
• Dehydration secondary to diarrhea, anorexia, oxygen therapy,
vomiting, and decreased fluid intake.
• Poor oral hygiene, mouth breathing, and poor fitting dentures.
88
Causes
• Treatment such as radiotherapy, medications (e.g. opioids,
tricyclic antidepressants, anticholinergics, diuretics, and
chemotherapy).
• Tumour infiltration.
• Erosion of the buccal mucosa by disease or treatment.
• Infection – Fungal (e.g. candidiasis)
– Bacterial (e.g. gingivitis)
– Viral (e.g. herpes simplex)
62. How are xerostomia and stomatitis assessed?
What are the interventions?
Assessment
1. History – oral dryness, pain or discomfort including intensity,
timing (onset, duration, constancy), associated symptoms,
aggravating and alleviating factors, and significance to person.
Complete a medication review.
2. Physical Examination – examine the oral pharyngeal cavity
including gums, palate, tongue, buccal mucosa, dentition, and
lips.
3. Investigations – CBC and differential, bacterial, fungal and viral
swabs, and possibly a biopsy.
General Interventions
• Maintain clean, moist mouth and lips. When appropriate, use
an ultra-soft toothbrush (child’s size least traumatic) or sponge
tipped swab dipped in carbonated soda water for regular
mouth care. Be sure to brush all surfaces of the tongue, roof
of the mouth, gums, and inside of the cheeks, in addition to all
surfaces of the teeth. If a toothbrush is not available, use gauze
wrapped around a finger and dipped in carbonated soda water.
Toothpaste is not essential, but, if desired, a mild formulation
works best.
• Provide mouth care before and after meals, at bedtime or
routinely with other nursing care, such as regular repositioning.
89
• Offer frequent sips of water, small ice chips, ice cubes made
with club soda, frozen fruit chunks such as pineapple or grapes,
frozen juice, and/or popsicles.
• Suggest sugarless gum, mints, or hard candy to stimulate
production of saliva.
• Avoid the use of petroleum products and glycerine products;
use water-soluble lubricants or lip balms.
• Avoid mouthwashes containing alcohol, baking soda, or
hydrogen peroxide as they can be dehydrating, abrasive,
and/or damaging to the oral mucosa. Use “soda water”
with carbonation or sodium chloride as a cleansing rinse.
Chlorhexidene 0.12% oral rinse may also be used, especially if
the person is at high risk for oral infection.
• Ensure dentures are properly fitted. Remove dentures for
cleaning and possibly overnight.
• Provide humidification in the person’s room.
Nursing Alert
These interventions and dietary suggestions may only be
effective for the milder form of these oral conditions.
General Dietary Interventions
• Offer soft foods such as cooked cereal, pancakes, soft pasta
dishes, soft fruit, puddings, ice cream, well-cooked vegetables,
eggs, fish, casseroles, and milkshakes.
• Add butter, margarine, gravy, sauces, or soups to help soften
and moisten foods.
• Drink soups or beverages with meals.
• Exercise caution with food and fluid temperature.
• Avoid tobacco and alcohol products.
Dietary Interventions
• Avoid acidic, spicy, salty, and rough textured foods.
• Avoid tart foods such as citrus juices, lemonade, cranberry juice
or pickles.
90
Pharmacological Interventions
• Artificial saliva sprays.
• Pilocarpine (Salagen®) 5-10mg PO 3-4 times daily, maximum
dose of 30mg per day.
• Viscous Xylocaine or Pink Lady (Viscous Xylocaine 2% and
Maalox®).
• Tantum oral rinse (15ml swish for 1-3 min every 4 hours ATC).
• Antifungal such as Nystatin (Mycostatin ®) mouth rinse 500,000
units swish and swallow after meals and at bedtime (QID).
Fluconazole 100mg PO/IV daily for 5-7 days. Ketoconazole
200mg PO twice daily for 5-7 days.
• Antivirals such as Acyclovir 200mg PO q4h 4-6 times daily for 10
days. Famcyclovir 500mg PO 3 times daily for 7 to 10 days.
• Antibiotics (e.g. Clindamycin, Amoxicillin or Metronidazole).
• Systemic analgesics may be appropriate in the setting of severe
stomatitis.
Nursing Alert
Be cautious of the risk of aspiration with the use of viscous
Xylocaine before eating. The throat may be anesthetized and the
ability to swallow safely impaired. Encourage the person to sit
upright with the chin tucked down when eating or drinking and
observe closely for signs of aspiration.
References
Chalmers, J., & Johnson, V. (2004). Evidence-based protocol: Oral
hygiene care for the functionally dependent and cognitively
impaired older adult. Journal of Gerontological Nursing, 30(11),
5-12.
Langhorne, M., Fulton, J. & Otto, S. (2007) Oncology Nursing (5th
ed.) St. Louis, Mosby.
Sweeney, M. P., & Bagg, J. (2000). The mouth and palliative care.
American Journal of Hospice and Palliative Care, 17(2),
118-124.
91
Fatigue
63. What is fatigue? What are the causes?
Fatigue is a complex multifactorial syndrome that develops over
time and is characterized by physical, mental, and psychological
effects that reduce capacity and impact quality of life. The
prevalence of fatigue in patients with cancer is 70-100%, but it is
also very common in persons with other advanced illnesses such as
renal failure, HIV/AIDS, and advanced cardiac disease.
Causes
• Effects of disease (e.g. cancer, HIV/AIDS or COPD),
• Medical treatments and their related side-effects,
• Underlying medical conditions (e.g. infections, anemia, and/or
hypoxia),
• Metabolic and/or electrolyte imbalances,
• Sleep disturbances,
• Inactivity or immobility,
• Poor symptom management,
• Psychosocial and spiritual distress, • Anorexia cachexia syndrome (See Question 24).
64 How is fatigue assessed?
What are the interventions?
Assessment
1. History – physical and mental fatigue, quality (e.g. tiredness
or exhaustion), severity, timing (onset, duration, constancy,
daily pattern), sleep history, psychosocial or spiritual distress,
associated symptoms, aggravating and alleviating factors,
and significance to person (distress or impact). Review the
medications.
2. Physical Examination – general appearance, level of alertness,
vital signs, strength, tone, and reflexes in extremities, and ability
to complete activities of daily living.
3. Investigations – CBC and differential, glucose, thyroid function,
metabolic and electrolyte screen.
92
Non-Pharmacological Interventions
•
•
•
•
•
•
•
•
Referral to physiotherapist and/or occupational therapist,
Education,
Energy conservation and restoration (see Appendix E),
Balance between activity and rest,
Sleep hygiene,
Nutrition and hydration management,
Stress management,
Cognitive and behavioural strategies (e.g. relaxation therapy,
hypnosis, delegating, and setting limits),
• Psychosocial and/or spiritual counselling and support.
Pharmacological Interventions
• Manage the underlying medical conditions (e.g. infections,
anemia, hypoxia, anorexia cachexia syndrome, and metabolic
abnormalities).
• Minimize medication side effects (e.g. early morning
administration of steroids and diuretics).
• Manage symptoms that can increase fatigue (e.g. pain, nausea,
shortness of breath).
• Use medications such as Progestogens, Methylphenidate, and
Modafinil when non-pharmacological methods are ineffective.
References
Bender, C., Kramer, P., & Mraskowski, C. (2002). Cognitive
Impairment, In New directions in the management of cancerrelated cognitive impairment, fatigue, and pain. Bridgewater, NH:
Ortho Biotech.
Dean, M., Harris, J., Regnard, C., & Hockley, J. (2006). Symptom relief
in palliative care. United Kingdom: Radcliff Publishing Ltd.
Hospital Pharmacists’ Special Interest Group in Palliative Care. (2009).
Care beyond cure: Management of pain and other symptoms (4th
ed.) Ottawa, Canada: Canadian Society of Hospital Pharmacists.
Larsen, D., & Mallett, L. (2010). Gastrointestinal symptoms. In M.
Matzo & D. Witt Sherman (Eds.), Palliative care nursing: Palliative
care to the end of life (3rd edition, pp. 463-487). New York, NY:
Springer Publishing Company LLG.
Nail, L. N. (2002). Fatigue in patients with cancer. CLOR, 29(3), 537542.
Stone, P., Richardson, A., Ream, E., Smith, A. G., Kerr, D.J., & Kearney,
N. (2000). Cancer-related fatigue: Inevitable, unimportant and
untreatable? Results of a multi-centre patient survey. Cancer
Fatigue Forum. Annals of Oncology, 11(8), 971- 975.
93
Circulatory Conditions
65. What are the causes of hemorrhage?
Hemorrhage and exsanguination are rare complications for the
person living with life-limiting illness. Significant bleeding occurs
in 6% to 10% of persons with advanced cancer. Terminal massive
hemoptysis occurs in 3% of persons with lung cancer.
Causes
• Direct tumour invasion of major vessels in the head, neck,
lungs, and gynecological regions are most commonly associated
with massive hemorrhage. Metastatic involvement from tumour
eroding into major vessels also has the potential to cause
massive hemorrhage.
• Thrombocytopenia is an abnormally low platelet count.
Causes of thrombocytopenia include: low platelet production
in the bone marrow, increased platelet breakdown in the
bloodstream, and increased platelet breakdown in the spleen or
liver. Thrombocytopenia may be found in persons with aplastic
anemia, cancer in the bone marrow, cirrhosis, folate deficiency,
infections in bone marrow, myelodysplasia, and Vitamin B12
deficiency. Use of certain drugs (e.g. chemotherapy) may cause
a reduction in platelet production. Symptoms include bruising,
nosebleed, bleeding mouth and gums, and petechiae.
• Disseminated intravascular coagulation (DIC) is a disturbance
in the blood clotting mechanism characterized by concurrent
coagulation and hemorrhage triggered by such factors
as transfusion reactions, septicemia, chemotherapy, and
substances released by malignant cells.
• Liver failure results in disturbances in blood coagulation. It also
can interfere with portal circulation contributing to esophageal
varicies that are prone to bleeding.
94
66. What are the interventions for hemorrhage?
Identifying the underlying cause of hemorrhage is essential in order
to determine the appropriate intervention(s). Identify persons
with a potential for bleeding (e.g. an ulcerating neck tumour, a
tumour in close proximity to large neck arteries, recurrent episodes
of bleeding, recurrent rectal or upper GI bleeds or underlying
anticoagulation problems).
Bleeding is a traumatic experience for the person, family, and staff.
Discuss the possibility of hemorrhage with the person and/or family
and develop a plan of care.
Pharmacological Interventions
• Midazolam (Versed®) 5mg subcut repeat every 5 minutes for 3
doses. This may be used for sedation in the event of a massive
hemorrhage.
• Transexamic acid (Cyklokapron®) 500mg PO 4 times daily may
reduce the risk of bleeding.
Clinical Tip
If bleeding is anticipated, have medications pre-drawn and
accessible. The use of a prefilled syringe of midazolam stored near
the person will facilitate rapid response. Parenteral midazolam
may be stored at room temperature in a dark place for up to 30
days.
Non-Pharmacological Interventions
• Have a supply of dark coloured towels or blankets ready in or
near the person’s room to absorb the blood. Use simple hygiene
measures and the dark towels to minimize the visual impact of
bleeding.
• Provide continuous support to the person and family using a
calm and reassuring approach.
• Assist the person into a comfortable position.
• Consider the goals of care. Hydration may be initiated,
especially if bleeding is slow and progressive.
95
• Apply direct pressure to the site if bleeding is external.
• Pack the area using an absorbable hemostatic product if the
bleeding originates from the nose, vagina, or rectum.
• Suction the oropharyngeal area with a soft suction catheter and
low suction pressure if gagging becomes a problem. Take care
not to exacerbate bleeding or pain.
• Give regular analgesics using an appropriate route.
Clinical Tip
Occasionally the infusion of platelets may be indicated for
the person with critically low platelet levels who is actively
bleeding (petechiae, hemoptysis).
Nursing Alert
In event of massive hemorrhage in persons with advanced
disease, aggressive treatment to alleviate the cause of
bleeding is rarely indicated. Family members and caregivers need
to be sensitively informed and prepared for the possibility of a
massive hemorrhage. Establish common goals of care with all
those involved.
96
67. What are thrombi and emboli?
What are the causes?
Thrombi are blood clots that form in a vessel or within the heart
and remain there.
Emboli are obstructions in a blood vessel that travel from vessels or
heart chambers to other vascular locations. Emboli and obstructing
materials may develop from various causes, including air, blood,
fat, tissue, and/or bacteria.
Causes
Coagulopathy is common in cancer and may often be the
presenting symptom of cancer. Causes of thrombus formation
include abnormalities related to any of the following:
• Blood flow due to bed rest, vascular compression by tumours,
or hyperviscosity of blood.
• Vessel wall damage due to tumour invasion or trauma.
• Blood composition due to elevated serum levels of coagulation
factors and increased circulating activated coagulation factors.
68. How are thrombi and emboli assessed?
What are the interventions?
Assessment
1. History – consider cough, location of clot, pain, and dyspnea
(e.g. including quality, intensity, onset, associated symptoms,
aggravating and alleviating factors). Review medications.
2. Physical Examination – observe the circulation to affected
limbs, signs of edema, temperature, colour, vital signs, mobility,
and respiratory function.
3. Investigations –- CBC and differential, PT or INR, PTT, D-dimer,
electrolytes, renal and hepatic function, doppler, and/or spiral
CT scan.
97
Non-Pharmacological Interventions
• Encourage frequent position changes to prevent the
development of thrombi and emboli.
• Encourage bed rest initially (e.g. high Fowler’s for persons with
pulmonary emboli).
• Immobilize affected limbs initially.
• Avoid warm compresses and massaging the affected area(s).
• Consider compression stockings.
• Address associated symptoms (e.g. provide oxygen and/or
analgesic as required).
• Consider the insertion of an IVC filter.
• Consider invasive surgery as last resort.
Pharmacological Interventions
• Consider anticoagulant therapy for an existing clot and
prophylaxis for persons with decreased mobility. The choice of
an anticoagulant depends on the ease of administration and
minimizing the burden of blood monitoring.
References
Harris, D. G., & Noble, S. I. R. (2009). Management of terminal
hemorrhage in persons with advanced cancer: A systematic
review. Journal of Pain and Symptom Management, 38(6),
913-926.
Pereira, J. (2004). Management of bleeding in person with
advanced cancer. The Oncologist, Symptom Management and
Supportive Care, 9, 561-570.
Prommer, E. (2005, June). Management of bleeding in the
terminally ill person. Hematology, 10(3), 167-175.
Sarhill, N., Walsh, D., Nelson, K., & Davis, M. (2001). Evaluation and
treatment of cancer-related fluid deficits: Volume depletion and
dehydration. Supportive Care in Cancer, 9(6), 408-419.
98
Spinal Cord Compression
69. What is spinal cord compression?
What are the causes? How is it assessed?
Spinal cord compression (SCC) is a serious neurological problem and
considered a palliative emergency. SCC occurs when a spinal cord
tumour or metastatic tumour grows in the spine and destroys the bony
vertebral body that surrounds the cord, or wraps around the spinal
cord and its nerve roots. If the vertebral body collapses, it puts pressure
on and compresses the spinal cord, leading to swelling, cord injury,
and possibly permanent paralysis. With early detection and treatment,
paralysis may be prevented.
Causes
Spinal cord compression is most often associated with cancers that tend
to spread (metastasize) to the bone, including breast, lung, prostate,
kidney, multiple myeloma, and lymphoma.
Clinical Tip Early recognition and diagnosis of spinal cord compression before
neurological deficits occur results in the best treatment outcomes.
Assessment
1. History
Back pain, include location, quality, intensity, and onset. The most
common presenting symptom is steady and progressive back pain
that may radiate from the cervical spine, down the arms, and/
or around the thorax creating a band-like pressure. It may also
radiate from the lumbar or sacral area resulting in pain in the lower
extremities. The pain may be aggravated by movement, coughing,
straining, or lying down. It may also be provoked by gentle neck
flexion or straight leg raises. Complete a medication review.
2. Physical Examination
• Palpate the spine for point tenderness.
• Complete a neurological examination including muscle strength
(often reduced), deep tendon reflexes (may be or ),
sensation, rectal tone
– Sensory changes include numbness, tingling, and coldness in
the affected extremities.
99
– Motor changes may include weakness and ataxia.
– Autonomic dysfunction including urinary hesitancy or
incontinence, constipation, reduced rectal tone, sexual
dysfunction.
3. Investigations – Urgent MRI is the investigation of choice. If an
MRI cannot be done, CT scan.
70. What are the interventions for spinal cord
compression?
Interventions
• Dexamethasone (Decadron®) 8-10mg PO/subcut 2-4 times daily.
Reduce rapidly to lowest effective dose.
• Consult neurosurgery for spinal decompression and
stabilization.
• Consult radiation oncology. Radiation may alleviate pressure on
the spinal cord from the tumour to prevent progression resulting
in permanent paralysis. The full pain-relieving benefits of RT
may not be achieved until about 10-14 days following treatment.
Nursing Alert
Delay in treatment may leave the person paralyzed and without
bowel and bladder control. Action may not result in the
prolongation of life; however, it can impact the person’s
quality of life.
References
Canadian Cancer Society. (2013). Spinal Cord Compression.
Retrieved from www.cancer.ca.
Drudge-Coates, L. & Rajbabu, K. (2008). Diagnosis and
management of malignant spinal cord compression: Part 1.
International Journal of Palliative Nursing, 14(3), 110-112, 114-5.
Drudge-Coates, L. & Rajbabu, K. (2008). Diagnosis and
management of malignant spinal cord compression: Part 2.
International Journal of Palliative Nursing, 14(4), 175-180.
Schulmeister, L. & Gatlin, C. G. (2008) Spinal cord compression. In
Gates, R. A. & Fink, R. M. (Eds.) Oncology Nursing Secrets (3rd
ed., pp.546-550). St Louis: Mosby Elsevier.
100
Superior Vena Cava Syndrome
71. What is superior vena cava syndrome?
What are the causes? How is it assessed?
Superior Vena Cava (SVC) Syndrome is compression of the
superior vena cava resulting in the reduction of blood flow from the
head, neck, arms, and thorax to the heart.
Causes
• The most common cause is cancer. Cancers of the lung,
lymphoma, or metastases to the mediastinum can cause
compression of the superior vena cava.
• Another cause, although uncommon, is thrombi formation within
the superior vena cava.
Assessment
1. History – quality, severity, intensity and onset, associated
cardiac/pulmonary symptoms, and aggravating and alleviating
factors. Complete a review of medications. Consider the following
symptoms:
• Upper extremities and/or tightness of throat,
• Shortness of breath and orthopnea,
• Chest pain, tachycardia, and/or cough,
• Feeling of fullness in the head or headache, dizziness, visual
disturbances and/or nausea. These may worsen when leaning
forward.
2. Physical Assessment – examine head, chest, upper extremities,
and respiratory/cardiac function. Take note of the following signs:
• Flushing of the face, and swelling/edema of the face, neck, or
arms, dilatation of the neck and chest veins,
• Hoarseness, stridor, nasal congestion, cough, increased
respiratory rate.
2. Investigations – chest x-ray, thoracic CT scan, Doppler,
venography, or MRI imaging.
101
72. What are the interventions for superior vena
cava syndrome?
Interventions
•
•
•
•
Provide information and support,
Position to relieve dyspnea,
Provide oxygen therapy,
Administer dexamethasone (decadron®) 8-10mg po/subcut 2-4
times daily. Reduce rapidly to lowest effective dose.
• Consider radiation and/or chemotherapy,
• Administer opioids for pain or dyspnea as required,
• Avoid insertion of IV or subcut devices in affected limbs or chest.
References
Wan, J. F. & Bezjak, A. (2009). Superior vena cava syndrome.
Emergency Medical Clinics of North America, 27, 243-255.
Wilson, L. D., Detterbeck, F. C., Yahalom, J. (2007). Superior vena
cava syndrome with malignant causes. New England Journal of
Medicine, 356(18), 1862-1869.
102
Seizures
73. What are seizures? What are the causes?
How are seizures assessed?
Seizures are characterized by involuntary muscle twitching that
result from an abnormal discharge of neurons. Seizures are
considered a palliative emergency.
Causes
Causes of seizures include primary or metastatic cerebral tumours,
meningeal malignancy, paraneoplastic syndromes, medications,
withdrawal from medications or alcohol, metabolic disturbances,
infection, intracerebral hemorrhage, and stroke.
Assessment
1. History – initial focus of seizure activity, frequency and extent
of motor involvement, intensity, timing (onset, duration,
constancy), associated symptoms, aggravating and alleviating
factors, history of alcohol or drug misuse. Complete a review
of medications (e.g. Phenytoin levels are sensitive to a number
of other medications, as well as available protein stores in the
body).
2. Physical Examination – consider level of consciousness,
incontinence of urine or stool, hypoxemia, motor and sensory
changes.
3. Investigations – CBC and differential, glucose, thyroid,
metabolic and electrolyte screen, kidney and liver function
studies, drug levels and/or toxicology screen, CT head, MRI
brain and/or spine, and lumbar puncture.
103
74. What are the interventions for seizures?
Interventions
• Provide information and support.
• Attend to positioning. Place the person in the recovery position;
move any objects that might cause injury
• Provide oxygen therapy as needed.
• Reverse and/or correct identified causes.
• Consider seizure prophylaxis including anticonvulsant therapy
(e.g. Phenytoin 200-1200mg PO/IV per day in divided doses;
Carbamazepine – maximum daily dose is 800-1200mg PO in
divided doses; Valproic Acid 1000-2500mg PO per day). All
these doses are dependent on the serum level of the drug. If
the oral route is not possible, Phenobarbital 30-120mg can be
given subcutaneously 2-3 times daily. These drugs may be very
sedating.
• Manage active seizures with Midazolam (Versed ®) 5 mg subcut/
IV every 5 minutes as needed, Lorazepam (Ativan®) 2mg
subcut/IV every 15 minutes as needed, or Diazepam (Valium ®)
2 mg bolus doses up to 10mg IV every 15 minutes as needed.
These medications should be given for seizures lasting longer
than 2 minutes.
References
Currow, D., & Clark, K. (2006). Emergencies on Palliative and
Supportive Care. Oxford: Oxford University Press.
Simonetti, F., & Carcini, A. (2006). Seizures. In E. Bruera, I. J.
Higginson, C. Ripamonti, & C. F. VonGunten (Eds.), Textbook of
Palliative Medicine (pp. 841-848). Philadelphia: London: Hodder
Arnold.
Walsh, D., Caracini, A., Fainsinger, R., Foley, K., Glare, P., Goh,
C., Lloyd-Williams, M., Nunez Olatre, J., Radbruch, L. (2009).
Palliative Medicine. Philadelphia: Saunders Elsevier.
Watson, M. S., Lucas, C. F., Hoy, A. M., Block, I. N. (2005). Oxford
Handbook of Palliative Care. Oxford: Oxford University Press.
104
Alternative and Complementary
Therapies
75. What are alternative and complementary
therapies? What are the nursing responsibilities?
Alternative therapies are therapies that may be used instead of
conventional care.
Complementary therapies are therapies used in addition to
conventional therapies.
Although grouped together, complementary and alternative
therapies have some significant differences. Goals of
complementary therapies may be to promote relaxation, to reduce
stress and anxiety, to relieve pain and other symptoms, to reduce
adverse effects of conventional therapies, and to improve sleep.
Evidence based complementary therapies have been shown to
affect physical, emotional, and spiritual well-being in beneficial
ways.
Alternative therapies are sometimes considered in place of
mainstream cancer therapies such as surgery, chemotherapy and
radiation therapies. These therapies are often based on anecdotal
rather than research-based evidence and can misguide, raise
false hopes, and financially exploit. Alternate therapies may be
associated with significant risks.
Complementary and alternative therapies are sought for a variety of
reasons including:
• Enhancing self-care and sense of well-being,
• Controlling symptoms,
• Reducing fear and anxiety,
• Improving quality of life,
• Maintaining hope,
• Increasing a sense of control,
• Yielding to family pressure,
• Mistrust of the medical system, and/or
• Convenience of accessing information about alternative therapy
options on the internet.
105
Nursing Responsibilities
• Recognizing the person’s autonomy in decision-making,
• Providing information to ensure awareness of evidence-based
health care treatment,
• Supporting the person’s exploration of therapy in a nonjudgmental manner,
• Assisting and encouraging the person to obtain accurate
information (e.g. potential risks, benefits, and limitations) and/or
potential interactions with other medications or therapies,
• Reviewing policies and procedures specific to these therapies,
• Encouraging the person to maintain openness with his or her
physician regarding the use of these therapies.
References
Kravats, K., & Berenson, S. (2010). Complementary and alternative
therapies in palliative care. In B. Ferrell & N. Coyle (Eds.), Oxford
textbook of palliative nursing (3rd edition, pp. 545-565). New
York, NY: Oxford University Press.
106
Palliative Sedation
76. What is palliative sedation? What needs to be
considered?
Palliative sedation is the process of inducing various degrees of
unconscious through the use of medications. Palliative sedation
can be considered when the person is in the final hours to days
of life, and is experiencing severe suffering caused by one or
more intractable symptoms. Symptoms are considered intractable
when all appropriate interventions have failed to bring adequate
symptom relief.
The purpose or intent is not to hasten death but to provide comfort
and relieve suffering of refractory symptoms. The most common
refractory symptoms include refractory dyspnea and agitated
delirium. It is less commonly used for refractory pain and vomiting.
Use for purely existential/spiritual symptoms is controversial, and
should only be initiated in rare cases.
Palliative sedation is also known as controlled sedation, continuous
deep sedation, prolonged sedation, or sedation for intractable
distress in the dying person. The level of palliative sedation can
be superficial or deep; intermittent or continuous. Continuous
palliative sedation should be considered only in persons with a
prognosis of two weeks or less.
While palliative sedation is ethically justified based on precepts
of dignity, autonomy, beneficence, fidelity, non-maleficence, and
the rule of double effect, it can be a complex issue with ethical,
emotional, cultural legal, and technical considerations.
Palliative sedation is not to be confused with euthanasia (see
Question 94).
Palliative sedation should only be administered in exceptional cases
where refractory suffering is evident and for the person who is close
to end of life.
107
Nursing Alert
Palliative sedation is used to relieve intolerable and
refractory symptoms only when all other therapeutic
measures have failed. The expertise required to assess for the
suitability of palliative sedation is a specialized skill set requiring
advanced education and experience in hospice palliative care
medicine.
When considering palliative sedation, the following must be
addressed:
• A terminal disease exists.
• A thorough assessment has been conducted to treat reversible
symptoms.
• The person is suffering from refractory symptom(s).
• Pharmacologic and non-pharmacologic approaches to symptom
control have been maximized (e.g. titration of opioids for
dyspnea and pain, appropriate dosing of neuroleptics for
delirium, distraction or relaxation techniques, and counselling in
the case of anxiety or dyspnea).
• Consultations have been made with Palliative Care Specialists to
ensure symptom control strategies have been exhausted.
• Goals of care indicate no resuscitation measures to be
undertaken.
• Prognosis – Is death imminent (hours to days)?
Prior to initiating palliative sedation, it is essential to:
• Discuss palliative sedation with the person, family, or agent/
proxy named in an advance directive, and the primary physician.
• Document the rationale for palliative sedation and the process
of consent.
• Provide the family with time and opportunity for private
conversation before the person enters a deep sleep.
• Provide psychosocial support to the family.
108
Clinical Tip
The induction and maintenance of sedation is most often
achieved through use of a continuous subcutaneous or
IV infusion of Midazolam (Versed ®). The Richmond Agitation
Sedation Scale (RASS) can be used to assess and titrate sedation. A
common starting dose is 1mg per hour, titrated upward to achieve
the desired level of sedation. Midazolam 2.5-5 mg subcut may be
given as a loading dose.
Clinical Tip
The minimum dosage required to control the intolerable
and refractory symptom(s) should be used (i.e. titrate
to clinical effect). If comfort cannot be achieved with one drug,
another drug with minimally overlapping disadvantages may be
trialed (e.g. methotrimeprazine, phenobarbital).
Nursing Alert
Opioid analgesics should be continued even when palliative
sedation is used. Palliative sedation is reversible by discontinuing
the sedating medication.
References
Beel, A., McClement, S. E., & Harlos, M. (2002). Palliative sedation
therapy: A review of definitions and usage. International Journal
of Palliative Nursing, 8, 190-199.
Cherny, N. I., & Radbruch, L. (2009). European Association for
Palliative Care (EAPC) recommended framework for the use of
sedation in palliative care. Palliative Medicine, 23(7), 581-593.
De Graeff, A., & Dean, M. (2007). Palliative sedation therapy in the
last weeks of life: A literature review and recommendations for
standards. Journal of Palliative Medicine, 10(1), 67-85.
Knight, P. & Epiosa, L. A. (2010). Sedation for refractory symptoms
and terminal weaning. In B. R. Ferrell & N. Coyle (Eds.).
Palliative Nursing (3rd ed., pp 527-528). New York: Oxford
Press Inc.
109
Mercadante, S., Intravaia, G., Villari, P., Ferrera, P., David, F.,
& Casuccio, A. (2009). Controlled sedation for refractory
symptoms in dying persons. Journal of Pain and Symptom
Management, 37(5), 771-779.
Morita, T. (2004) palliative sedation to relieve psycho-existential
suffering of terminally ill cancer patients. Journal of Pain and
Symptom Management, 28(5), 445-450.
Vogel, L. (2011). Framework urges physicians to proceed with
caution on palliative care. Canadian Medical Association
Journal, 183(2), 174-175.
Walsh,D., Carceni, A.T., Fainsinger, R., Foley, K., Glare, P., Goh,
C., Lloyd-Williams, M., Nunez Olarte, J., Radbruch, L. (2009).
Palliative Medicine. Philadelphia: Saunders.
110
Part II
Psychosocial, Spiritual, Cultural,
Ethical, and Legal Issues
A NOTE TO CAREGIVERS
Although controlling pain and other physical symptoms can be
difficult, addressing the emotional and spiritual concerns of the
terminally ill person, family, and other caregivers can be equally if
not more challenging. Self-awareness for the health professional
is important when interacting with persons and families with
psychosocial, spiritual, cultural issues, ethical, and legal issues.
111
Family and Coping
A family consists of a group of persons emotionally connected with
one another.
77. What is helpful to know about the person’s
family?
Assessment
Identify the following:
• Individuals the person considers to be family,
• Family’s awareness and understanding of medical and other
information, amount and type of additional information desired,
• Family’s concerns about the illness,
• Family’s ability and willingness to participate in care,
• Age and developmental stages of family members,
• Family rules, values, beliefs, styles, and past experiences that
may influence quality of life and the health/illness experience,
• Patterns of family communication and methods of decisionmaking, and ability/willingness of family members to openly
share information, thoughts, and feelings about the illness
experience,
• Cultural beliefs and practices that may influence roles,
communication or decision making ,
• Concurrent stressors and coping strategies among individual
family members,
• Nature of the relationships of each family member with the
person since diagnosis and any points of strength or conflict,
• Success of role changes within the family, • Availability of social and other support systems, • Strengths identified by the family. Nursing Alert
Be careful not to make judgments based on your
assumptions of an “ideal” or “normal” family.
112
78. What is coping? What are coping strategies?
Coping refers to the cognitive and behavioural strategies used
to manage stressful situations and is a multi-factorial adaptation
process. Coping is affected by personality traits, personal coping
skills, and emotional and cognitive development. It is commonly
believed that coping mechanisms used previously by persons and
their families will likely be used when faced with life-limiting illness.
Some coping strategies might appear less useful, but the person
and family may have used them successfully in the past.
Common Coping Strategies
• Seeking information,
• Maintaining a “normal” life, for example, a caregiver continuing
to work,
• An attitude of “living with instead of dying from” a life-limiting
illness,
• Disengaging from life or relationships (e.g. withdrawing,
becoming depressed or apathetic),
• Expressing anger, hostility, guilt, or denial,
• Using food, non-prescription medications, or alcohol,
• Focusing on the positive and forcing painful thoughts into the
unconscious,
• Allowing or asking others to make decisions,
• Finding meaning in the terminal diagnosis,
• Intellectualizing by focusing on facts, • Striving for control.
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79. Which persons may be at risk for coping
poorly?
Persons at high risk for coping poorly and/or developing a major
psychological disturbance in response to a life-limiting illness may
include those persons with:
• Limited family or social support,
• Unresolved family issues (e.g. estrangement or conflict in
relationships),
• Recent losses or unresolved grief,
• Current or past history of alcohol or drug use,
• History of mental or physical illness,
• Overwhelming feelings of apathy, hopelessness, despair or
helplessness,
• Concurrent life crises or situational stressors (e.g. multiple losses
or loss of income).
80. How can support be offered to family
members?
Interventions
• Determine how family members have coped with illness in the
past.
• Explore the person’s and family’s concerns and expectations
regarding illness, dying, and death.
• Correct misinformation and explore concerns.
• Facilitate access to and understanding of medical and other
information. Allow time for information to be processed.
• Be prepared to provide information several times as families
under stress may not be able to comprehend and remember
details. Ensure all members of the health care team are
providing consistent information to the family.
• Help family members differentiate their beliefs and needs from
those of the dying person, and if possible, provide assistance in
meeting those needs.
• Encourage family members to make time to look after their own
health.
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• Facilitate communication between family members and the
dying person, if desired.
• Assist family members in finding ways to be present as the dying
person becomes less able to interact with them.
• Provide families with practical information about topics such as
the physical process of dying, making funeral arrangements, and
accessing insurance benefits.
• Teach family members about the physical, emotional, and
spiritual effects of grief (e.g. loss of appetite, sadness, and
difficulty sleeping).
• Explain that feelings such as shock, numbness, anger,
ambivalence, sadness, and fear may or may not be part of
grieving and that the intensity of feelings may fluctuate.
• Help family members understand that individuals may have very
different experiences and ways of coping.
• Explain to the family that role reallocation and family
reorganization may be necessary.
• Facilitate access to needed resources (e.g. pharmacy that
delivers, equipment, supplies, and volunteer help).
• Facilitate referral to a psychosocial professional as needed.
Nursing Alert
Be realistic. Recognize that this is not the time to change the
family’s communication style or a lifetime of established
coping skills.
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81. How is loss of control expressed by persons
and their families? How can they be assisted to
maintain a sense of control?
Loss of control can be a significant source of distress for persons
and their families. The ill person may experience progressive
dependency, family role disruption, and alteration of future plans.
Those struggling with loss of control may seek detailed medical
information, insist on maintenance of a consistent routine, make
frequent requests of caregivers and criticize care provided, direct
anger or frustration toward caregivers, or insist on doing activities
that risk injury.
Interventions
• Reinforce that the person and family are an important part of
the team. Demonstrate this by including them in decisions and
assisting them to participate in care in which they wish to be
involved.
• Provide opportunities for the person and family to discuss what
is important to them.
• Provide information as requested; allow time for it to be
processed.
• Support existing strategies for maintaining control (e.g. being
assertive, directing care).
• Encourage maintenance of usual routines.
• If hospitalized, encourage the family to make the environment
home-like (e.g. display family photos and bring in the person’s
clothes).
• Facilitate referral to spiritual and religious leaders as desired.
• Respect the choices made by the person or family. Recognize
the difference between personal opinions and what the person
or family believe is important.
116
Psychosocial
82. What is anxiety? How does the person express
anxiety? What are the interventions?
Anxiety is a non-specific subjective feeling of uneasiness, stress, and
insecurity. Anxiety can range from mild to severe depending on the
perceived threat. The expression of anxiety can include restlessness,
irritability, jitteriness, agitation, and panic.
Interventions
• Expressive-supportive therapies (e.g. listen to the person,
encourage expression of feelings).
• Relaxation exercises (e.g. massage, imagery, soothing music,
slow rhythmic breathing exercises).
• Complementary therapies (e.g. aromatherapy, therapeutic
touch, Reiki, acupuncture, meditation).
• Referral to a social worker, psychologist, or spiritual care
provider for counselling.
• Pharmacological modalities: benzodiazepines, nonbenzodiazepines, and neuroleptics may be considered.
Nursing Alert
People with advanced cancer are vulnerable to the side
effects of psychoactive medications. Monitor for delirium. Suggest
discontinuing any anxiolytic if delirium is suspected.
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83. How is depression expressed?
What are the interventions?
Depression in advanced disease may be under diagnosed.
Nevertheless, sadness and depressed mood are normal responses
to a diagnosis of a life-limiting illness and depressed mood may not
indicate depression. Conditions that may mimic depression include:
hypoactive delirium, hypercalcemia, hypothyroidism, and the side
effects of some medications. Somatic symptoms of depression, such
as anorexia, weight loss, and fatigue, are of little value in diagnosing
depression in a person as they are common in advanced disease.
Assessment
A 0–10 rating scale can be used to screen for the possibility
of depression (see Appendix A). It is important to assess for
psychological indicators of depression including: profound feelings
of worthlessness, guilt, hopelessness, anhedonia (inability to
experience pleasure in normally pleasurable acts), thoughts of
“wishing for death”, and thoughts of suicide.
Interventions
• Facilitate referral to a psychosocial professional.
• Respectfully acknowledge the person’s sadness or depressed
feelings.
• Encourage the person’s expression of feelings or emotions.
• Involve the person in aspects of their care and provide choices.
• Involve the person in normal social conversation.
• Help the person set achievable and realistic goals.
• Review and reinforce realistic ideas and expectations.
• Focus on the person’s strengths. • Establish rapport by frequent short visits.
• Resist giving false reassurances.
Nursing Alert
Antidepressants should be considered for treatment
when the person expresses ongoing psychological indicators of
depression, especially feelings of being a burden, wishing for
death, and/or expressing suicidal ideations.
118
84. What interventions are used when dealing with
anger?
Anger is a common emotion. Feelings of anger may be directed at
the caregiver, the health care professional/system, family members,
or spiritual deities. Anger often results from perceived feelings of
powerlessness, anxiety, and fear.
Interventions
•
•
•
•
•
•
•
•
•
Validate the person’s feelings of anger. Attempt to identify the source of anger.
Respond to the feeling, not the words.
Realize that the anger is not directed at you.
Keep your voice level low, even if the other person becomes
loud and aggressive.
Sit down at eye level with the individual.
Let the person know that s/he has been heard.
Take responsibility for any of your actions that would be
legitimately upsetting and apologize as appropriate. Do not
provide excuses for the actions of others.
Provide examples of how anger can be constructively vented.
119
85. What are the interventions for supporting the
person who is crying?
Crying is a common reaction in many situations. People express
emotions along a continuum. While some only express their
feelings in private, others express their feelings in public. Be
sensitive to these individual differences. Your comfort level with
other’s emotions will impact your ability to support them.
Interventions
• Provide a supportive, non-judgmental environment in which the
person feels safe and comfortable to express feelings.
• Do not try to stop someone from crying.
• Acknowledge emotions in a reflective, non-threatening manner.
• If appropriate, ask why they are crying; do not assume you
know the reason for the emotion.
• Do not provide false hope or lessen the reality of devastating
news. Use therapeutic silence when warranted.
• Ask questions (e.g. “What kind of support system do you
have?”) If supports are inadequate, offer suggestions for
providing support.
86. How is denial expressed?
What are the interventions?
Assess the degree of denial. Denial can be displayed on a
continuum ranging from selective focusing, when the person
makes the conscious choice not to acknowledge the illness and
its implications, to a complete lack of awareness of the facts
of the illness. Selective focusing can be beneficial because it
provides necessary respite from preoccupation with death and
allows time for information to be absorbed and for alternate
coping mechanisms to be mobilized. If the person and/or family
completely deny the medical condition, there can be detrimental
effects, such as ignoring medical advice or failure to use the
remaining time to organize their affairs, resolve family issues, or
leave a legacy.
120
Nursing Alert
Be cautious in your use of the label “denial.” It is often
perceived as a negative term that implies poor coping.
In fact, behaviour labelled as denial can be a very positive means
of living with a terminal disease. Whether or not to live in denial,
accept treatment, and/or prepare for death are all personal
choices.
Interventions
• Determine what the person and family have been told and their
understanding of the illness.
• Acknowledge the rights of the person and family to make future
plans.
• Do not provide false hope or attempt to break down the denial.
• Be aware that the person and family may not be experiencing
the same level of denial.
87. What is a child’s understanding of death?
A child’s understanding of death is influenced by age related
developmental stages.
Ages 0-2 Years: This age group has no understanding of death and
they are unlikely to be able to differentiate death from temporary
separation.
Ages 3-5 Years: Children 3-5 years of age are very concrete
thinkers and do not fully understand the permanency of death as
they view death as a temporary departure or separation. They may
forget the person has died and can confuse death with sleep. They
are able to connect death with events (beginning to understand
cause-effect), but may attribute life to inanimate objects.
Ages 6-8 Years: This age group often experiences much confusion
and misunderstanding with death. They are magical thinkers, who
may see death as external and avoidable. They understand death
as linear – that individuals die when they are old. This group may
personify death (e.g. a ghost, shadow, or a skeleton), and could
feel some responsibility for a death, that has occurred and may see
death as punishment.
121
Ages 9-12 Years: Abstract thinking is developing in children 9-12
years of age and they are beginning to understand that death is
universal, inevitable, and permanent. Children in this age group
are beginning to inquire about what happens to the body and spirit
after death. They are socially concerned and able to acknowledge
the feelings of people around them.
Ages 13-17 Years: Teenagers are able to understand the
implications of death and may be overwhelmed by intense
emotion when someone has died. They may feel invincible, but
death shatters this belief. When a death has occurred, they may be
shocked and confused about their reactions.
88. How can children be prepared?
Children often perceive that something is wrong even if they are not
told. Routines are disrupted and people close to them may look and
act differently. It is best to tell children what is wrong rather than
allowing them to fantasize.
Talking with Children
• Provide a comfortable environment early in the day when there
is time to listen. Avoid times before bed, school, or important
events.
• Allow time for children to express feelings.
• Answer questions simply and honestly. Use words children
understand. Pace information to give the child time to assimilate
and process.
• Ask children what they understand or think about the illness and
the future (e.g. Do you know what kind of sickness Daddy has?
What do you think happens when someone gets sick? Have you
ever thought that Mommy may not get better?).
• It is important to explain to children what caused the illness. If
the cause is not known, tell children this and reassure them that
the person’s illness is not their fault.
• Explain what has happened and what may happen next (e.g.
Daddy’s body is getting weaker every day. Sometimes when a
person gets this sick, they can’t get well again).
122
• Relate the situation to a previous experience of death such as
the loss of a grandparent or the loss of an animal, using nature
as the cycle of life.
• Use dolls or draw pictures.
• Ask children to explain back to you what they understand from
your conversation so that you can clarify confusion.
• Go back later and ask if there are any questions. Repeat
information as often as needed.
• Read or provide books that discuss life and death.
• Access grief programs for children.
Specific Actions to Take with Children
Suggest that families reassure children that they will be supported,
cared for, and loved. Provide extra hugs, kisses, and spend time
together when possible. Encourage families to normalize the
routine by maintaining usual structure and boundaries.
Nursing Alert
It is okay for adults to cry in front of children and to tell them
how they are feeling. However, adults must be careful not to
overwhelm children with the intensity of their own emotions.
References
Cairns, M., Thompson, M., & Wainwright, W. (2003). Transitions in
dying and bereavement: A psychosocial guide for hospice and
palliative care (pp. 61-62). Baltimore: Health Professions Press.
Chochinov, H. (2002). Dignity-conserving care – A new model for
palliative care, JAMA, 287, 2253-2260.
Kreicbergs, U., Valdimarsdottir, U., Onelov, E., Henter, J. I., &
Steineck, G. (2004). Talking about death with children who have
severe malignant disease. New England Journal of Medicine,
351(12), 1175-86.
Faulkner, K.W. (2001). Children’s understanding of death. In A.
Armstrong-Dailey & S. Zarbrock Goltzer (Eds.) Hospice care for
children (2nd ed., pp. 9-22). New York: Oxford University Press.
Pereira, J. L. & Associates. (2008). The Pallium palliative
pocketbook: A peer-reviewed, referenced resource. (1st Cdn.
Ed.) Edmonton, Canada: The Pallium Project.
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Spirituality and Hope
89. What are spirituality and religion? How are
spirituality and religion assessed?
For many individuals, spirituality is expressed through religious
means.
Spirituality refers both to the essence of what it means to be
human, such as our sense of who we are, and to a connection to
a transcendent domain. Spirituality encompasses how we seek
meaning in life and how we experience ourselves in relationship
with other people and possibly with a Higher Power.
Religion is associated with an organized system of faith, beliefs,
worship, rituals, and relationship with a divine being. Religions
are belief systems that can provide a framework for spirituality.
Religious rites, writings, and rituals can provide concrete ways of
expressing and fostering spirituality for believers.
Assessment
Identify the following:
• Personal meaning of illness,
• Relationships with others and/or a higher being,
• Ways in which spirituality and/or religious beliefs influence care
decisions at the end of life,
• Personal history of loss, grief, and style of coping,
• Sources of meaning and purpose in life,
• Sources and targets of hope,
• Need to give or receive forgiveness or acceptance,
• Need to reconcile, and/or
• Significant religious or spiritual practices.
124
A tool that can aid in your spiritual assessment is the FICA Spiritual
Assessment Tool©:
The FICA Spiritual Assessment Tool© was developed by Dr. Puchalski
and a group of primary care physicians to help health care
professionals address spiritual issues with patients. The acronym
FICA can help structure questions when taking a spiritual history in
the clinical setting.
F – Faith and Belief
Do you consider yourself spiritual or religious?” or “Do you
have spiritual beliefs that help you cope with stress?” If the
patient responds “No,” the health care provider might ask,
“What gives your life meaning?” Sometimes patients respond
with answers such as family, career, or nature?”
I –Importance
“What importance does your faith or belief have in our life?
Have your beliefs influenced how you take care of yourself in
this illness? What role do your beliefs play in regaining your
health?”
C –Community
“Are you part of a spiritual or religious community? Is this
of support to you and how? Is there a group of people you
really love or who are important to you?” Communities such
as churches, temples, and mosques, or a group of likeminded friends can serve as strong support systems for some
patients.
A – Address in Care
“How would you like me, your health care provider, to
address these issues in your healthcare?”
Reprinted with permission from Dr. Puchalski, The George Washington Institute for
Spirituality & Health. Available online at www.gwish.org
125
Signs that may indicate spiritual distress include:
• Questioning of religious faith and beliefs such as, “Why would
God allow this to happen to me? Why am I being punished? What
did I do wrong?”
• Other difficult questions, such as, “What does this mean? Is it too
late to turn to God?”
• Expressions of anxiety, hopelessness, worthlessness, guilt, shame,
failure, remorse, regret, and/or sense of meaninglessness.
• Feelings of abandonment.
• Physical symptoms, which may be a manifestation of spiritual
pain and despair.
90. What interventions support the person’s
spirituality and religion?
Interventions
• Acknowledge and respect the beliefs and views of the person.
• Be present for people as they experience suffering and struggle
with difficult questions. Being present involves being with the
person physically, psychologically, and spiritually, often without
words. It also involves having the courage to face your own and
others’ suffering, helplessness, fear, and despair.
• Be available to listen actively, non-judgmentally, and with
acceptance.
• Explore spiritual beliefs, issues and concerns with the person and
his or her family.
• Arrange for time, space, privacy, and resources to facilitate
significant religious or spiritual practices as requested by the
person (e.g. prayer, meditation, administration of sacraments,
and/or reading of religious writings).
• Acknowledge your limitations as a clinician and arrange for
appropriate supports (with person’s approval) based on the
person’s belief system.
Nursing Alert
People may find meaning or purpose from a life-limiting
illness that supports them to endure suffering, accept dying, and
realize value in the present. The search for meaning can provide an
opportunity for growth and self-reflection.
126
91. What is hope? How is it assessed?
What are the interventions?
Hope has been described as an inner power or a life force. It is
essential to the human experience and is closely associated with
human suffering. Hope enables people to move forward and
engage in life and protects them from being engulfed by suffering
and negativity. Hope can be a generalized state of being within the
self or it can be specifically focused on a valued goal or outcome
(e.g. the person hopes to live until Christmas). The target or
intensity of hope may change as an illness progresses. Redefining
hope is an ongoing process.
Nursing Alert
Ensuring that hope is realistic is not a nursing resposibility.
If we challenge what we consider to be unrealistic, we run
the risk of stripping a person of important ways of coping. When
tempted to label hope as unrealistic, we need to ask ourselves,
“Whose reality are we talking about, mine or the person’s?” Each
person has the right to choose what to hope for in keeping with his
or her own perceptions, beliefs, and attitudes toward reality.
Assessment
Identify the following:
• Effect of illness on sense of hope,
• Factors that enhance or diminish hope,
• Meaning and sources of hope,
• Targets of hope (e.g. attending a daughter’s wedding or leaving
a legacy),
• Values, beliefs, information that support the person’s hopes.
Interventions
Assist the person to:
• Focus on personal strengths and abilities,
• Lead a normal life (as much as possible), without constantly
focusing on the illness,
• Reflect on past accomplishments, positive memories, and
significant milestones,
127
• Create a personal legacy (e.g. photo album for children or
letters),
• Maintain meaningful relationships with family and significant
others,
• Identify personal goals and hopes, and find opportunities to
achieve them,
• If old hopes are unattainable, replace with new hopes,
• Identify images, symbols, or rituals that foster hope.
Sustain your own hope. Use humour and be positive in your
interactions with others. Be honest and clear in the delivery of
information, while respecting each individual’s “need to know”
(too much information and/or unsolicited information can destroy
hope). Remind people that prognosis predictions can be inaccurate.
A person may have future hopes and goals that are unlikely to be
realized. Focusing on these hopes could prevent the person from
taking important actions or completing preparations for death.
Encouraging the person to complete these actions or preparations,
without destroying hope, may be facilitated by the following
approaches:
• A “what if” approach – invites the person and family to reflect
upon what they would do differently if things don’t turn out as
they hope (e.g. What if the treatment doesn’t cure you?)
• A “just in case” approach – encourages the person and his or
her family to hope for the best while planning for the worst,
just in case it happens (e.g. Just in case you don’t live until the
wedding, is there anything you’d like to do now)?
• A “normalizing” approach – encourages the person to complete
end of life planning and finish business because it’s something
we all should do.
Nursing Alert
Remember that some people can accept and prepare for
death while also holding onto hope. For example, a person
may already have planned a funeral and completed a will, yet
adamantly maintains hope for a cure and focuses on living life fully
to the end. Other people will not accept or prepare for death – and
that is their right.
128
References
Borneman, T., Ferrell, B., & Pulchalski, C. (2010). Evaluation of
the FICA Tool for Spiritual Assessment. Journal of Pain and
Symptom Management, 40(2), 163-173.
Pereira, J. L. & Associates. (2008). The Pallium palliative
pocketbook: A peer-reviewed, referenced resource. (1st Cdn.
Ed.) Edmonton, Canada: The Pallium Project.
Puchalski, C. (2006). Spiritual Assessment in Clinical Practice.
Psychiatric Annals, 36(3), 150-155.
Puchalski, C. & Romer, A. (2000). Taking a Spiritual History Allows
Clinicians to Understand Patients More Fully. Journal of
Palliative Medicine, 3(1), 129-137.
Sherman, D. W. (2001). Spiritually and culturally competent
palliative care. In M.L. Matzo & D.W. Sherman (Eds.), Palliative
care nursing: Quality care to the end of life (pp. 3-47). New
York: Springer.
Sinclair, S. (2012). Spiritual care. In D. Oneschuk, N. Hagen & N.
MacDonald (Eds.), Palliative Medicine: A Cased-Based Manual
(pp 209-220). Oxford: Oxford University Press.
Wright, L. (2005). Spirituality, suffering, and illness: Ideas for
healing. Philadelphia: Davis.
Culture
92. What is cultural competence?
How is it applied to practice?
The goal in providing “culturally competent” care is to be sensitive
and aware of the beliefs, values, practices, and traditions of others,
and respect them when providing care. Cultural experience includes
self-awareness, cultural knowledge about illness and healing
practices, communication skills, and behavioural flexibility. Culturally competent behaviours include:
• Self-awareness: Be aware of your cultural beliefs and values
and how they influence the care you give. It is important that
you do not impose your values on others.
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• Breaking down stereotypes: Judgments can be easily
formed about those who are different from us. To eliminate
misinformation and bias, dialogue and comunication are
important to help us learn more about each other.
• Exploration of cultural values and beliefs: Discover the
uniqueness of each person by asking questions about
such things as family lifestyle, patterns of authority and
communication, and expectations of caregivers.
• Facilitation of meaningful practices: Support and make
referrals to appropriate persons, groups, or institutions who can
facilitate the practice of specific rituals, customs, or traditions
• Determine the person’s preference for disclosure: The desire
to tell or know the truth about illness or death is a cultural value
that is not shared by everyone. Remember that people have the
right “not to know” if this is their wish. Some families or cultural
groups may wish to shield a dying person from knowing he or
she has a life-limiting illness (e.g. some cultures may prefer to
shield the person from knowing his or her diagnosis because
the knowledge of a life-limiting illness may result in loss of hope
and the will to live).
Clinical Tip
To determine a person’s preference for information
disclosure, ask “Besides yourself, is there anyone else that
you would like us to talk to about your medical information?”
Possible preferences include the person alone, the person and
family, or a designated family member only.
Nursing Alert
When using a family member as a translator, be mindful
that the intended message may be altered. Explore if your
organization has translation services available.
130
93. How does culture influence the dying process?
A person’s culture may influence:
• Expression and meaning of pain and suffering,
• Attitude toward disclosure and awareness,
• Beliefs about the cause and meaning of illness,
• The choice of healer and treatment regimen,
• Attitudes toward death and dying,
• Beliefs about the afterlife, and the value of human life and the
body,
• Expressions of loss and grief, • Death rituals, including preparation for death, burial, funeral
or memorial services, customs for disposal of the body, and
mourning rites.
References
Cloutier, K. (2000). Customs and traditions in times of death and
bereavement (4th ed.). Calgary, AB: McInnis & Holloway Funeral
Homes.
Elliot, G. (2011). Cracking the cultural competency code. Canadian
Nursing Home. 22(1), 27-31.
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Euthanasia and Suicide
94. What are euthanasia and assisted suicide?
What are the nursing responsibilities?
Euthanasia means knowingly and intentionally performing an act
that is explicitly intended to end the life of a person who has an
incurable illness, and doing so with empathy and compassion and
without personal gain.
Assisted suicide means knowingly and intentionally providing
a person with the knowledge or means or both required to
commit suicide, including counseling about lethal doses of drugs,
prescribing such lethal doses or supplying the drugs.
Euthanasia and assisted suicide are often regarded as morally
equivalent, although there is a clear practical distinction, as well as
a legal distinction, between them.
Persistent requests for euthanasia, once physical symptoms are
controlled, are usually due to psychosocial and/or spiritual distress
(e.g. hopelessness, a loss of meaning and purpose in life, a feeling
of being a burden to others, isolation or abandonment, depression).
Nursing Responsibilities
•
•
•
•
•
•
Be non-judgmental and reflective,
Explore the reason(s) for the request,
Identify fears and sources of suffering,
Ensure physical symptoms are adequately controlled,
Take measures to alleviate psychosocial and spiritual distress,
Discuss with the person and family their choices regarding
treatment, (e.g. medications for chronic illness, high flow
oxygen, hydration),
• Refer to a social worker, psychologist, spiritual care provider, or
ethics consultant for further support
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Nursing Alert
There will be a very small number of people who continue to
request euthanasia or assisted suicide despite interventions.
At the time of publication, euthanasia and assisted suicide are
illegal in Canada. Politely and non-judgmentally decline this
request, and explore possible underlying reasons. It is important
that the individual does not feel abandoned. Make sure you have
support and an opportunity to express your own feelings about
these challenging situations
95. What are the risk factors for suicide?
What are the interventions?
Suicide risk factors include:
• Verbal and behavioural clues (e.g. isolation or withdrawal,
communicating death wishes, statements reflecting a sense of
hopelessness, or resistance to care),
• A detailed suicide plan including method and time frame, with
no precautions for rescue,
• Lack of social support,
• Social isolation,
• Significant losses,
• Fear of being or becoming a burden,
• Significant life stressors (e.g. serious or debilitating illness of a
loved one and/or financial concerns),
• Depression,
• Prior suicide attempts,
• Being between 15-24 years of age or over 50.
Interventions
To reduce the risk of suicide, consider the following:
• Determine the extent of depression,
• Facilitate the person’s expression of feelings,
• Provide a safe environment,
• Provide symptom management,
• Inform members of the interdisciplinary team about suicide risk,
• Refer to psychosocial resources,
133
• Connect with family and significant others to develop a support
plan,
• If the person expresses suicidal ideation – Explore the person’s suicide plan, including method, plan for
rescue, timing, and organizational detail.
– Immediately notify the person’s attending physician.
– Refer immediately to a professional trained in suicide
intervention.
Reference
Canadian Medical Association (2007). CMA Policy: Euthanasia and
Assisted Suicide. Ottawa: Canadian Medical Association.
Goals of Care
96. What influences Goals of Care and Advanced
Care Planning?
There are a number of different terms that are used when referring
to goals of care, including preferences for comfort, medical, and
resuscitative interventions. Current recommendations focus on
advance care planning and use of terms that direct care such as
Allow Natural Death, Comfort Measures, and Provision of Comfort
Care.
Influencing factors regarding interventions, including
resuscitation are:
• Extent of disease,
• Quality of life (defined by the person),
• Current goals of care and perception of interventions,
• Values and beliefs of the person and family that align with the
goals of care,
• Medically appropriate interventions,
• Individual consideration of benefits and burdens of treatment,
• Potential causes of cardiac arrest and the likelihood of recovery.
134
Some people have Advance Directives (Living Wills) or Advanced
Care Planning documents that guide decision-making. These
documents provide an opportunity for discussion of the goals
of care, and outline a person’s wishes in the event that he or
she is unable to make decisions. If a person has an Advance
Directive, read it and become familiar with the contents. Consult
your organization’s policies and procedures related to Advance
Directives. Legislation varies regarding Advance Directives across
provinces/territories.
97. How are goals of care discussed?
When discussing goals of care with a person and family:
• Ensure a comfortable, quiet, and private setting.
• Explore knowledge of illness and prognosis.
• Address their misconceptions; be cautious when denial,
unrealistic hope, or a preference for non-disclosure are present.
• Discuss the goals of care and examples of interventions.
• Use the terminology Allow Natural Death, rather than Do Not
Resuscitate.
• Assure that each goal is intended to optimize care. Reversible
complications may still be treated if desired and symptoms will
continue to be aggressively managed.
• Emphasize that the goal of hospice palliative care is to provide
comfort, alleviate suffering, enhance quality of life, and promote
a peaceful death.
• Explain that if the disease progresses and the person’s heart or
breathing stops, efforts at resuscitation are unlikely to succeed.
• If the heart does resume beating, the person may remain
unresponsive and will usually die shortly afterwards.
• Resuscitation efforts usually inflict needless suffering for persons
and families and are not recommended.
• The nurse should be prepared to initiate the conversation and
discuss goals of care with the patient and family.
135
Resources for the public and health care professionals are available
from a variety of sources, including The Advance Care Planning
National Task Group at www.advancecareplanning.ca/about-advancecare-planning/advance-care-planning-national-task-group.aspx.
Organ and Tissue Donation
98. Can an individual with terminal illness, advanced
disease, or cancer donate? Is an open-casket
funeral possible after organ and tissue donation?
Yes, individuals 80 years of age or younger with a terminal illness,
advanced disease or certain cancers may be eligible for eye and
tissue donation. Organ donation may also be possible when a
terminally ill person is being cared for in an intensive care unit. All
potential organ and tissue donors are assessed on a case by case
basis.
Tissues which can be donated include:
• Eyes – for sight-restoring surgeries
• Skin – to help burn patients
• Bone and Tendons – to aid bone repair or restore joint mobility
• Heart for valves – for life-saving heart repair procedures
Open casket funerals are possible after organ and tissue donation.
All efforts are made to ensure that there are no visible signs that
donation has occurred. Donation should not interfere with any
funeral arrangements that are made.
136
99. What is the health care professional’s role in
organ and tissue donation?
Offering the option of tissue donation empowers patients and
families to make choices in keeping with their own wishes and goals
of care at the end of life. In order to support patients and families to
make these decisions, it is important for health care professionals
to facilitate and respond to conversations about donation. If the
health care professional does not ask about donation wishes, the
discussion may not happen. After the window of opportunity to
donate is closed, families can feel regret.
Discussing donation prior to determining an individual’s eligibility
to donate can create false hope. When possible, screening for
initial eligibility before approaching patients and families may help
eliminate false expectations. Health care professionals can work
with their local organ and tissue donation program to develop a
process for initial screening.
For more information on organ and tissue donation, contact the
donation/transplantation program in your region.
Last Days
100.How can nurses prepare families for the last
days of life?
Nurses can help families prepare by:
• Letting them know that predicting the time of death is difficult.
Time frame can be described in general terms, such as “hours
to days”, “days to weeks”, “weeks to months” or “months to
years”. If family is concerned about prognosis, ask what would
be done differently if time was short.
• Being proactive and trying to anticipate family concerns, fears,
and feelings about dying and death.
• Exploring their fears openly and non-judgmentally, correcting
distorted expectations, and addressing concerns.
• Assessing their ability to cope.
137
• Supporting them in coming to terms with impending death.
• Teaching them the indicators of imminent death (See Question
101).
• Teaching them about comfort measures.
• Facilitating timely access to appropriate services and resources. • Giving a copy of the book A Caregiver’s Guide: A handbook
about end of life care, available from the Canadian Hospice
Palliative Care Association http://www.chpca.net.
• Encouraging them to carry out family and/or religious rituals as
desired.
• Exploring the appropriateness and importance of contacting out
of town family member(s). Answers to the following questions
may facilitate the family’s decision:
– How soon is the person likely to die (e.g. hours to days, days
to weeks, or weeks to months)?
– Does the ill person want these persons to be informed of his
or her condition?
– Is it important that the family member visits?
– Is there an issue that needs to be resolved?
• Helping family members understand that the person’s
progressive withdrawal and detachment does not indicate
rejection.
101.What are the indicators of imminent death?
Explain to family members that as the body’s functions shut down,
changes occur. Reassure family members that observed changes,
especially changes in breathing, are usually more distressing for
family than for the dying person.
Physiological changes or signs may include:
• Reduced urine output and/or concentrated urine,
• Changes in pattern and sounds of breathing such as periods of
apnea (Cheyne-Stokes) or sounds of congestion,
• Progressive coldness, discolouration, and mottling of skin,
• Weakening pulse, • Fluctuating level of consciousness with a gradual decline,
accompanied by decreased awareness, dysphagia, and flaccid
muscles.
138
Nursing Alert
Anxiety, restlessness, confusion, and hallucinations may not
be indications of imminent death but instead may be poorly
controlled symptoms. Further assessment and management are
needed.
102.What are the interventions in the last days of
life?
Interventions
The following strategies are intended to facilitate a peaceful and
dignified death:
• Provide privacy,
• Maintain the person’s sense of identity and dignity,
• Provide gentle, respectful care, • Provide optimal symptom management,
• Help fulfill a final wish or resolve a pressing concern (e.g. help
restore important relationships),
• Encourage family members to talk to the person even if he or
she appears not to hear or respond,
• Suggest family members say their good-byes,
• Demonstrate how to talk to and care for the person with your
own words and actions,
• Encourage family to take care of themselves and not to neglect
their need for sleep and food,
• Provide emotional support,
• After the death, offer the family private time with the deceased;
remain with them if requested.
• Ask if there is anything you can do (e.g. make phone calls to
relatives, arrange a visit by clergy),
• To the extent possible, honour special requests regarding
treatment of the body after death (e.g. some cultures or
religions call for the body to not be left alone).
139
Nursing Alert Discuss with family their wishes regarding being present at
the time of death. If their hope is to be present, they may not
want to take time away from their loved one.
Grief and Bereavement
103.What is grief?
What are the immediate interventions?
Grief is a personal emotional response to a loss, and impacts every
aspect of a person’s being. Grieving may start with the diagnosis
of a life-limiting illness and can continue until well after the death.
Nurses can support families in their grieving process.
Interventions
• Show your genuine concern and emotions.
• Avoid clichés (e.g. You need to be strong now. It’s God’s will.
I know how you feel). Such responses can make survivors
feel angry, misunderstood, or unsupported. Every person’s
experience is unique.
• Use touch when appropriate.
• Allow for silence; often your presence is appreciated.
• Don’t be afraid to say, “I don’t know what to say”.
• Facilitate expression of feelings or conversation about the
person who has died.
• As appropriate, share your memories of the deceased and talk
about his or her special qualities.
• Assist with rituals at the time of death.
• Contact spiritual or religious leaders if desired by the family.
• If family members are not present at the time of death, ask them
what this means to them. They may be interested or reassured
to know it is not uncommon for people to die when their family
is not present.
140
Be especially involved in the following situations:
• There is limited support from relatives, friends, or the
community,
• The death is of a child or young adult,
• The death was sudden,
• There are significant questions or concerns about the cause of
death,
• There are significant questions or concerns about the location
of death (e.g. home vs. hospital vs. hospice vs. alternate level of
care).
104.What are some interventions for bereavement
follow-up?
Coping during bereavement fluctuates over time (e.g. a person
may need to be told that it is common to move between feeling sad
and laughing with friends). The brain and body can only sustain
intensity of emotion for short periods. Healthy bereavement is the
ability to continue to thrive despite the loss. While grief is a normal
process, those who are grieving may experience higher rates of
medical and psychiatric events, including depression in the first year
after a death.
Critical times for bereavement follow-up:
• 2 weeks to 1 month – it is important to make initial contact,
• 3 months – often the first crisis occurs at this stage as extended
family leave and people begin to believe the person who is
grieving “should be over it”,
• 6 months,
• Anniversary of the death,
• Holidays, birthdays, and other anniversaries.
Interventions
Interventions for bereavement follow up may include:
• Providing a card with contact numbers and resources, including
formal grief support programs,
• Arranging home visits,
• Assisting with family rituals,
141
• Providing opportunities for the family caregivers to review their
experience,
• Commending the family on what they did for the person (e.g.
advocating for individual throughout illness),
• Making phone calls at critical times.
References
Aranda, S., & Milne, D. (2000). Guidelines for the assessment of
complicated bereavement risk in family members of people
receiving palliative care. Melbourne: Centre for Palliative Care.
Cairns, M., Thompson, M., & Wainwright, W, (2003). Transitions in
dying and bereavement. Baltimore: Health Professions Press.
Corless, I. B., (2010). Bereavement. In B. R. Ferrell & N. Coyle (Eds.),
Oxford book of palliative nursing (3rd ed., pp. 597-611), New
York, NY: Oxford University Press.
Grief, C. (2002, August). Bereavement in the elderly: Clinical
considerations. CPA Bulletin, 29-33.
Care for the Caregiver
105.What strategies can a nurse take to reduce his
or her stress?
Caring for terminally ill persons and their families can be
challenging. Some strategies that professional caregivers can use to
support self-care include:
• Acknowledging times of difficult or intense emotions or
questioning.
• Seeking assistance to work through recurring or ongoing grief
and loss in your personal life.
• Focusing on potential rewards and opportunities inherent in
caring for the dying:
– Connecting in a meaningful way.
– Transforming a difficult and painful time into a time of
comfort, meaning, and hope, as well as an opportunity for
personal and spiritual growth.
– Identifying meaning and purpose in one’s own life.
142
•
•
•
•
•
•
•
•
•
•
•
•
Using humour appropriately and with sensitivity.
Adopting a healthy, balanced lifestyle.
Holding a memorial service for families at your place of work.
Debriefing or conducting rituals to honour others and your work
after experiencing death(s) (e.g. lighting a candle or saying a
prayer in memory of the deceased).
Attending the funeral, if appropriate. Celebrating the happiness in your own life.
Requesting assistance or time-out at work without feeling guilty.
Setting realistic goals and limits, looking for small victories, and
celebrating success.
Seeking the support of a skilled mentor.
Participating in continuing education activities.
Joining or forming support groups, bereavement groups, or
palliative care associations.
Engaging in self-awareness activities that help you understand
your own emotional responses to persons and families as well
as death and mortality.
Nursing Alert
Health care professionals need to be careful not to hold
inappropriate or unrealistic expectations to ensure “a good
death”.
While a death can be considered good if all suffering is alleviated,
death is openly discussed and accepted, all business is finished,
good-byes are well-articulated, and the exit is made gracefully,
in some cases, death is neither good nor graceful. Many of the
problems and issues confronting dying people cannot be resolved,
despite the care providers doing all the “right” things.
143
106.What might be warning signs of inappropriate
boundaries?
Caregivers can develop a high level of concern for those they are
looking after. Sometimes it is challenging to maintain appropriate
boundaries. Families and ill persons often desperately need and
welcome professional support. If boundaries are inappropriate, the
person or family may not seek or receive the support that they need
(e.g. the caregiver is too distant or too intimate).
The following may be signs of inappropriate boundaries:
• Giving out your home number.
• Telling ill people or their families to call you anytime.
• Avoiding difficult questions or avoiding engaging in discussions
about concerns or issues (e.g., euthanasia, changing treatment
plans, feelings of abandonment or anger).
• Socializing with persons or families in your care.
• Conducting home visits that are more social than professional.
• Being treated or behaving like a family member.
• Becoming involved in family decisions.
• Receiving comfort from the person or family.
• Favouring one person‘s care at the expense of others.
• Being seen as the favourite or preferred nurse for a person.
• Giving and receiving inappropriate gifts. Nursing Alert
It is normal to develop a thorough knowledge of some
families in your care. Be careful not to confuse professional
familiarity with personal closeness. Remember that you are not a
family member nor a friend.
Reference
DeAngelis, R. (2004, September). Professional nursing boundaries:
Is crossing the line helpful or hurtful? (juried concurrent
presentation). Proceedings of the 15th International Congress on
Care of the Terminally Ill, Montreal.
144
General References
The following is a list of books and websites that may be of
assistance if further resources are sought.
145
Textbooks
Cairns, M., Thompson, M., & Wainwright, W. (2003). Transitions in
dying and bereavement: A psychosocial guide for hospice and
palliative care. Baltimore: Health Professional Press.
Hanks, G., Cherney, N., Christakis, N., Fallon, M., Kaasa, S., &
Portenoy, R. (2010). Oxford textbook of palliative medicine, 4th
edition. New York, NY: Oxford University Press.
Ferrell, B., & Coyle, N. (2010). Oxford textbook of palliative care
nursing. New York, NY: Oxford University Press.
Hospital Pharmacists’ Special Interest Group in Palliative Care.
(2009). Care beyond cure: Management of pain and other
symptoms (4th ed.) Ottawa, Canada: Canadian Society of
Hospital Pharmacists.
Oneschuk, D., Hagen, N., & MacDonald, N. (Eds.) (2012). Palliative
medicine: A case-based manual (3rd ed.). New York: Oxford
University Press.
Otto, S.E. (2001). Oncology nursing (4th ed.). St. Louis: Mosby.
Pereira, J. L. & Associates. (2008). The Pallium palliative
pocketbook: A peer-reviewed, referenced resource. (1st Cdn.
Ed.) Edmonton, Canada: The Pallium Project.
Victoria Hospice Society. (2006). Medical care of the dying (4th ed.)
Victoria, B.C.: Victoria Hospice Society.
Waller, A. & Caroline, N. (2000). Handbook of palliative care in
cancer (2nd ed.). Boston: Butterwort and Heinemann.
Wrede-Seaman, L. (2005). Pediatric pain and symptom
management algorithms for palliative care, (1st ed.).
Washington: Intellicard, Inc.
General Reference Websites
Canadian Hospice Palliative Care
Association
http://www.chpca.net
Canadian Network of Palliative Care
for Children
http://cnpcc.ca
Canadian Virtual Hospice
www.virtualhospice.ca
National Cancer Institute
http://www.cancer.gov
Palliative Care Links and Resources
http://palliative.info
Edmonton Zone Palliative Care
Program in Edmonton, Alberta
http://www.palliative.org
The Pallium Project
http://www.pallium.ca/
146
Appendices
A. Edmonton Symptom Assessment System – Revised (ESAS-r)
B. Faces Pain Scale - Revised (FPS-R)
C. CAGE Questionnaire
D. Table of Equianalgesic Doses of Opioids
E. Suggested Strategies for Energy Conservation
147
Appendix A
Edmonton Symptom Assessment System – Revised
(ESAS-r)
This tool is designed to assist in the assessment of nine symptoms
common in palliative care: pain, tiredness, drowsiness, nausea, lack
of appetite, shortness of breath, depression, anxiety, and wellbeing
(there is also a line labelled “Other Problem”). The severity at the
time of assessment of each symptom is rated from 0 to 10 on a
numerical scale, 0 meaning that the symptom is absent and 10
meaning the worst possible severity. The person and family should
be taught how to complete the scales. It is the person’s opinion
of the severity of the symptoms that is the “gold standard” for
symptom assessment.
The ESAS-r provides a clinical profile of symptom severity over
time. It provides a context within which symptoms can begin to be
understood. However, it is not a complete symptom assessment in
itself. For good symptom management to be attained, the ESAS-r
must be used as just one part of a holistic clinical assessment.
The ESAS-r is completed regularly, preferably at least once a day
(depending on the setting), and the score is then transferred to a
bar graph. The graphic representation allows the staff to visualize
patterns of symptom control and symptom expression over time.
Individuals can either complete the ESAS-r alone or with the
assistance of a caregiver, depending on their ability. If the person is
unable to complete the ESAS-r, then proxy ratings may be provided
by a caregiver.
The ESAS-r tool and bar graph, with more detailed guidelines
for use, can be accessed via the Edmonton Zone Palliative Care
Program website www.palliative.org.
148
Edmonton Symptom Assessment System (ESAS-r)
Edmonton Symptom Assessment System:
(revised version) (ESAS-r)
Please circle the number that best describes how you feel NOW:
No Pain
0 1 2 3 4 5 6 7 8 9 10
Worst Possible
Pain
No Tiredness
0 1 2 3 4 5 6 7 8 9 10
Worst Possible
Tiredness
1 2 3 4 5 6 7 8 9 10 Worst Possible
Drowsiness
(Tiredness = lack of energy)
No Drowsiness
0 (Drowsiness = feeling sleepy)
No Nausea
0 1 2 3 4 5 6 7 8 9 10 Worst Possible
Nausea
No Lack of
Appetite
0 1 2 3 4 5 6 7 8 9 10 Worst Possible
Lack of Appetite
No Shortness
of Breath
0 1 2 3 4 5 6 7 8 9 10 Worst Possible
Shortness of Breath
No Depression
0 1 2 3 4 5 6 7 8 9 10 Worst Possible
Depression
1 2 3 4 5 6 7 8 9 10 Worst Possible
Anxiety
1 2 3 4 5 6 7 8 9 10 Worst Possible
Wellbeing
No __________ 0 1 2 3 Other Problem (for example constipation)
4 5 6 7 8 9 10
Worst Possible
_______________
(Depression = feeling sad)
No Anxiety
0 (Anxiety = feeling nervous)
Best Wellbeing
0 (Wellbeing = how you feel overall)
Patient’s Name __________________________________________
Date _____________________
Time ______________________
Completed by (check one):
Patient
Family caregiver
Health care professional caregiver
Caregiver-assisted
BODY DIAGRAM ON REVERSE SIDE
ESAS-r
Revised: November 2010
149
Please mark on these pictures where it is that you hurt:
150
References
Bruera, E., Kuehn, N., Miller, M. J., Selmser, P., & Macmillan K.
(1991). The Edmonton Symptom Assessment System (ESAS):
A simple method of the assessment of palliative care patients.
Journal of Palliative Care, 1(7), 6-9.
Nekolaichuk, C, Watanabe, S, Beaumont, C. (2008). The Edmonton
Symptom Assessment System: A 15-year retrospective review
of validation studies (1991-2006). Palliative Medicine, 22,
111-122.
Watanabe, S. M., Nekolaichuk, C., Beaumont, C., Johnson, L.,
Myers, J., Strasser, F. (2011). A multi-centre comparison of two
numerical versions of the Edmonton Symptom Assessment
System in palliative care patients Journal of Pain and Symptom
Management, 41, 456-468.
151
Appendix B
Faces Pain Scale – Revised (FPS-R)
0
2
4
6
8
10
Numbers are not shown to the child.
Instructions to the child are: “These faces show how much
something can hurt. This face [point to left-most face] shows no
pain [or hurt]. The faces show more and more pain [point to each
from left to right] up to this one [point to right-most face] – it shows
very much pain. Point to the face that shows how much you hurt
[right now].”
Do not use words like ‘happy’ or ‘sad’. This scale is intended
to measure how children feel inside, not how their face looks.
Numbers are not shown to children; they are shown here only for
reference.
Copyright ©2001 International Association for the Study of Pain (IASP).
152
The full-size version of the Faces Pain Scale (FPS-R), together
with instructions for administration, are freely available for
noncommercial clinical and research use from
www.iasp-pain.org
References
Hicks, C.L., von Baeyer, C.L., Spafford, P., van Korlaar, I., &
Goodenough, B. (2001). The Faces Pain Scale – Revised:
Toward a common metric in pediatric pain measurement.
Pain, 93, 173-183.
International Association for the Study of Pain. (2001). Faces
Pain Scale – Revised. Retrieved from www.iasp-pain.org.
Scale adapted from: Bieri, D., Reeve, R., Champio, G., Addicoat,
L., & Ziegler, J. (1990). The Faces Pain Scale for the selfassessment of the severity of pain experienced by children:
Development, initial validation and preliminary investigation
for ratio scale properties. Pain, 41, 139-150.
153
Appendix C
CAGE Questionnaire
The CAGE Questionnaire was developed in 1970 by Dr. John A.
Ewing as a screening test for problem drinking and potential
alcohol problems. It consists of four simple questions which, when
administered properly, have been shown to be a valid and reliable
screening tool for detection of problem alcohol use.
The term “CAGE” is an acronym derived from the four questions
that make up the tool. The questionnaire should be completed
once as part of an initial multidimensional assessment. When the
CAGE questions are included as part of a baseline assessment,
they become a natural part of the medical history and there is less
chance of eliciting a defensive response from the patient.
The CAGE questionnaire screens for problem alcohol use only. It is
not designed to screen for other types of substance use.
The CAGE questions pertain to the whole life of the patient. It
is important that the interviewer make this clear to the patient.
Questions related to alcohol use that are not part of the CAGE
questionnaire should be asked after the CAGE questions have
been completed. For example, questions regarding volume of
alcohol consumed, date of last alcohol consumption, and periods
of abstinence are important parts of a thorough assessment, but
should be asked after the CAGE questions so as not affect the
validity of the CAGE questionnaire.
154
Administering the CAGE Questionnaire
Ask the following questions in the order in which they are listed.
Score one point for each affirmative answer (Yes = 1, No = 0). Do
not ask any other questions about alcohol use prior to asking these
questions.
1. Have you ever felt you should cut down on your drinking?
(Cut down)
2. Have people annoyed you by criticizing your drinking?
(Annoyed)
3. Have you ever felt bad or guilty about your drinking?
(Guilty)
4. Have you ever had a drink first thing in the morning or
(Eye-opener) to get rid of a hangover?
Score: _____ /4
2/4 or greater = positive CAGE and suggests increased risk for
coping with alcohol or chemical substances
Screening for Problem Alcohol Use:
The CAGE Questionnaire in Palliative Care
Tips for Use and Interpretation of the CAGE in Palliative Care:
1. Uncertainty exists regarding the significance of the date of last
alcohol consumption. Though even remote problem alcohol
use may complicate current symptom management, it should
be kept in mind that some patients may have developed more
effective coping skills since an earlier period of problem alcohol
use. In these patients, a positive CAGE score may not necessarily
indicate complicated symptom management.
2. Most individuals with a positive CAGE score do achieve stable
pain control. However, in the positive CAGE group, this occurs at
higher opioid doses than in those with negative CAGE scores.
The CAGE-AID Questionnaire is a combination of four simple
questions that can be used to screen individuals for a history of
alcoholism and/or drug addiction (this tool has not had reliability
and validity testing).
155
CAGE-AID Questions
In the past, have you ever:
1. Tried to Cut down or Change your pattern of drinking or drug
use?
2.Been Annoyed by others’ concerns about your drinking or drug
use?
3.Felt Guilty about the consequences of your drinking or drug
use?
4. Had a drink or used a drug first thing in the morning
(Eye-opener) to decrease hangover or withdrawal symptoms?
References
Aertgeerts, B., Buntinx, F., & Kester, A. (2002). The value of the
CAGE in screening for alcohol abuse and alcohol dependence in
general clinical populations: A diagnostic meta-analysis, Journal
of Clinical Epidemiology, 57(1), 30-39.
Delgado-Guay, M.O., & Bruera, E. (2008). Management of pain in
the older person with cancer Part 1. Oncology, 22(1), 56-61.
Lawlor, P. G., Quan, H., Hanson, J., & Bruera, E. (2000). Screening
for alcohol abuse in an advanced cancer population. Supportive
Care in Cancer, 8(3), 253.
Visit the Edmonton Zone Palliative Care Program website
www.palliative.org for further information.
156
Appendix D
Table of Equianalgesic Doses of Opioids
PO Dose
PO:subcut/
IV Ratio
Subcut/IV Dose
Morphine
10mg
2:1
5mg
Codeine
100mg
2:1
50mg
Oxycodone
5-7.5mg
2:1
2.5 – 3.75mg*
Tramadol
100mg
--
--
Hydromorphone
2mg
2:1
1mg
Methadone**
1mg
--
may not be
readily available
Fentanyl***
--
--
50mcg
Fentanyl Patch
use chart supplied by manufacturer
Drug
Morphine 10mg po = Hydromorphone 2mg po
Morphine 10mg po = Oxycodone 5 – 7.5mg po
Morphine 10mg po = Codeine 100mg po
Morphine 10mg po = Methadone 1mg po
* Oxycodone subcut formulation may not be readily available and
may require compounding pharmacy to produce.
** Because of the poor correlation between methadone’s metabolic
half-life and the duration of analgesic effect, initiation of
Methadone should be undertaken by a physician with expertise.
The equianalgesic ratio of Methadone to other opioids changes
according to the dose of the previous opioid, making rotation to
Methadone a complex undertaking.
*** There is some debate as to exact morphine-fentanyl equivalency.
The ratio appears to be approximately 100:1. For example, 10mcg
parenteral Fentanyl is equivalent to 1mg parenteral Morphine. The
equianalgesic ratio between parenteral Fentanyl and transdermal
Fentanyl (patch) is 1:1. For example, 25 mcg/h transdermal Fentanyl
is equivalent to 25mcg/h IV Fentanyl.
157
Nursing Alert
These tables are guidelines. There exists considerable
variation in the dose ratio due to inter-individual variability
in response to opioids. When switching opioids, doses should be
decreased by 25–30% or more to compensate for incomplete
cross tolerance, depending on severity of pain and adverse effects.
Incomplete cross-tolerance refers to tolerance to the current opioid
that does not extend completely to other opioids, thus typically
lowering the required dose of the second opioid.
Nursing Alert
Methadone should be started and titrated under the
guidance of a palliative care physician or pain specialist.
Administering and managing Methadone is more complex than
other opioids and serious complications can result if prescribed
incorrectly. A special license is required to prescribe and/or titrate
Methadone.
Reference
Saiger, G. (2012). Pain assessment and management. In D.
Oneschuk, N. Hagen & N. MacDonald (Eds.), Palliative Medicine:
A Case-Based Manual (pp 27-49). Oxford: Oxford University
Press.
158
Appendix E
Suggested Stategies for Energy
Conservation
An Occupational Therapist can assess the person’s
functional ability and safety in the home, as well as provide
recommendations regarding equipment, and techniques to
conserve energy, and maximize independence. Discuss the
benefits of Occupational Therapy involvement and refer as
needed. Strategies that the person can use include:
Activities of Daily Living
•
•
•
•
Sitting down to bathe. Wear a terry bathrobe to dry off.
Installing grab rails in the bathroom.
Using an elevated toilet seat.
Placing chairs in strategic places in your home to allow rest
stops.
• Wearing slip-on shoes and button or zipper front shirts.
Housekeeping
• Scheduling and pacing household tasks throughout the week.
• Doing housework sitting down if possible, such as ironing.
Using long-handled dust mops may be helpful.
• Delegating heavy chores such as shopping and laundry.
• Dragging or sliding objects rather than lifting.
• Stopping work before becoming tired.
• Organizing kitchen items in easy to reach locations (i.e.
between shoulder and hip height).
Shopping
•
•
•
•
Organizing list by aisle.
Using a grocery cart.
Shopping at less busy times.
Requesting assistance to the car.
159
Meal Preparation
•
•
•
•
•
Using convenience foods and easy-to-prepare foods.
Preparing meals sitting down.
Soaking dishes instead of scrubbing and let dishes air-dry.
Preparing double portions and freeze half.
Arranging your environment so you can easily access frequently
used items.
Child Care
• Plan activities that can be done while sitting down (e.g. drawing,
playing computer and board games, reading).
• Teach children to climb up on your lap instead of lifting them.
• Make a game of household chores so that children will want to
help.
• Delegate childcare when possible.
Workplace
• Plan workload to take advantage of peak energy times. Alternate
physically demanding tasks with sedentary ones.
• Arrange the work environment so you can easily access
commonly used equipment and supplies.
Leisure
• Do activities with a companion.
• Select activities that match your energy level.
• Balance activity and rest to avoid exertion.
Reference
Hospital Pharmacists’ Special Interest Group in Palliative Care.
(2009). Care beyond cure: Management of pain and other
symptoms (4th ed.) Ottawa, Canada: Canadian Society of
Hospital Pharmacists.
Donovan, E. (1995). Energy conservation. Educational program
sponsored by Oncology Nursing Society and Ortho Biotech Inc.
(used with permission).
160
Common Questions (and more) about Palliative Care. What is pain? How is pain
ssessed? What are different types of pain? Why is a history of substance
substa
abuse
elevant to pain assessment and management? How is it assessed? How
H is pain
sessed in someone who is confused? Which opioids are preferred fo
for use? How
hould opioids be ordered? 99 Common Questions (and more) about
abou Hospice
alliative CareWhat is breakthrough pain? How should break through opioids be
dered? What is the maximum dose of an opioid? What is the preferred
preferr route for
opioid? What is
ministration of opioids? What are the potential side effects of an opi
drowsiness with opioi
rotoxicity? What are the interventions? How can excessive drowsine
e be decreased? How are opioids used safely in persons with renal impairment?
i
What are the causes of myoclonus? 99 Common Questions (and more)
mo about
ospice Palliative CareDoes unrelieved pain always require increasing the opioid
e? Should opioids ever be withheld? Should placebos ever be admin
administered? Wh
other medications are used in the management of pain? What are the
t nonmaceutical interventions to control pain? How can questions regard
regarding addictio
anaged? How is pain managed in persons with an addiction history?
history 99 Commo
stions (and more) about Palliative CareWhat can be done when family
fam member
or request opioids inappropriately? What is anorexia cachexia syn
syndrome? Wha
he causes? How can appetite and oral intake be optimized? What can
c be done t
ist persons and their families cope with reduced nutritional intake? Is nutritiona
ort appropriate? What is constipation? How is it assessed? 99 Comm
Common Questio
nd more) about Hospice Palliative Care What causes constipation? What
W are the
rventions for constipation? How is diarrhea assessed? What are the causes? Wha
e the interventions? What is bowel obstruction? How is it assessed? 99
9 Common
estions (and more) about Hospice Palliative Care. What are the caus
causes? What ar
e interventions for bowel obstruction? What is dehydration? How is dehydration
ssed? When is it appropriate to hydrate? When is it not appropriate to hydrate?
hydration appropriate for a person who has edema? How should hydration
hy
be
ntained? What is nausea and vomiting? What causes nausea and vomiting?
vom
How
usea and vomiting assessed? What are the interventions to control nausea and
miting? 99 Common Questions (and more) about Hospice Palliative Care What is
irium? What are the causes of delirium? How is delirium assessed? What
W are the
erventions for delirium? What is dyspnea? What are the causes dysp
dyspnea? How is
pnea assessed? What are the interventions for dyspnea? What are eedema, ascite
d lymphedema? What are the causes? How are edema, ascites and lymphedema
l
ssed? 99 Common4th
Questions
(and more)
about Hospice
Palliative C
Care What ar
edition developed
in collaboration
with:
he interventions? Should bed-bound people be repositioned regularly?
regular What is
Edmonton
Zone
Care
Program
pruritis? What causes
it? How
is itPalliative
assessed?
What
are the interventions?
interventio What
Health
Services,
Edmonton,(dry
Canada
tributes to tasteAlberta
changes?
What
are xerostomia
mouth) and sto
stomatitis (sore
162
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xerostomia an
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