National Palliative Care Program,please email us at palliativecare@health.gov.au or visit our website:www.health.gov.au/palliativecare

Guidelines for a Palliative Approach in Residential Aged Care | Enhanced version — May 2006

For more information about the

Guidelines for a Palliative Approach in Residential Aged Care
Enhanced Version — May 2006

Prepared by Edith Cowan University

Approved by

Palliative care — quality of life for people with a life-limiting illness, their families and carers

Guidelines for a Palliative Approach in Residential Aged Care
Enhanced Version — May 2006

Prepared by Edith Cowan University

Approved by the National Health and Medical Research Council on 8 December 2005

Palliative care — quality of life for people with a life-limiting illness, their families and carers

NHMRC APPROVAL
These guidelines were approved by the National Health and Medical ResearchCouncil at its 159th Session on 8 December 2005, under section 14A of the
National Health and Medical Research Council Act 1992. Approval for the guidelines
by the NHMRC is granted for a period not exceeding five years, at which date theapproval expires. The NHMRC expects that all guidelines will be reviewed no lessthan once every five years. Readers should check with the Department of Healthand Ageing for any reviews or updates of these guidelines.
DISCLAIMER
This document is a general guide to appropriate practice, to be followed subject tothe clinician’s judgement and the patient’s preference in each individual case.
The guidelines are designed to provide information to assist decision-making andare based on the best evidence available at the time of compilation.
These guidelines can be downloaded from the National Health and Medical
Research Council website: www.nhmrc.gov.au or the Department of Health andAgeing website: www.health.gov.au/palliativecare
2004 First edition
2006 Enhanced version
This version of the guidelines was approved by the NHMRC on 8 December 2005.
The main changes to the document since the first edition in 2004 are the inclusionof the development process (now chapter 1); a significant revision of chapter 6(physical symptom assessment and management) to ensure the information isstronger than previously, particularly for the complementary and alternative
therapies; a revision of the guideline recommendations to reflect NHMRC’s
requirement for process and outcome to be included; and a revision of the main
body of the literature review document to ensure that the guidelines and theliterature review are more compatible.
© Commonwealth of Australia 2006
This work is copyright. Apart from any use as permitted under the Copyright Act
1968, no part may be reproduced by any process without prior written permission
from the Commonwealth. Requests and inquiries concerning reproduction andrights should be addressed to the Commonwealth Copyright Administration,
Attorney General’s Department, Robert Garran Offices, National Circuit, Canberra
ACT 2600 or posted at http://www.ag.gov.au/cca
ACKNOWLEDGEMENT OF FUNDING
The Guidelines for a palliative approach in residential aged care have beendeveloped by the Australian Palliative Residential Aged Care (APRAC) Project
funded by the Australian Government Department of Health and Ageing.
ISBN: 0 642 82939 X
Publications Approval Number: 3845

ii 		 Guidelines for a Palliative Approach in Residential Aged CareContents

LIST OF TABLES	vi
LIST OF FIGURES	vii
LIST OF VIGNET TES	viii
LIST OF ABBREVIATIONS	ix
FOREWORD

1

INTRODUCTION

3

SUMMARY OF GUIDELINES

7

1

GUIDELINE DEVELOPMENT PROCESS

15

1.1
1.2
1.3
1.4
1.5

Systematic literature review
Guideline formulation
Stakeholder involvement
Guideline development and refinement
Guideline implementation and evaluation

15
26
27
28
34

2

A PALLIATIVE APPROACH

37

2.1
2.2
2.3
2.4

Three forms of palliative care
When should a palliative approach be implemented?
Where can a palliative approach be provided?
Who can provide a palliative approach?

37
39
41
43

3

DIGNIT Y AND QUALIT Y OF LIFE

47

3.1
3.2
3.3
3.4

Dignity
Quality of life
‘Desire to die’ statements
Privacy and confidentiality

47
50
51
52

Guidelines for a Palliative Approach in Residential Aged Care

iii

4

ADVANCE CARE PL ANNING

55

4.1
4.2
4.3
4.4

Implementing advance care planning
Advance care planning for residents with advanced dementia
Legal considerations and documentation
The right to refuse food

55
57
57
59

5

ADVANCED DEMENTIA

61

5.1
5.2
5.3
5.4
5.5

How prevalent is dementia?
Advanced dementia and a palliative approach
Assessment
Management
Family support

61
61
62
65
66

6

PHYSICAL SYMPTOM ASSESSMENT AND MANAGEMENT

69

6.1 Symptom assessment
6.2 Pain management
6.3 Management of fatigue
6.4 Nutrition and hydration
6.5 Anorexia
6.6 Cachexia
6.7 Nausea and vomiting
6.8 Dysphagia
6.9 Mouth care
6.10 Skin integrity
6.11 Bowel care
6.12 Dyspnoea
6.13 Complementary therapies

69
71
85
87
96
96
98
99
101
104
106
109
111

7

PSYCHOLOGICAL SUPPORT

117

7.1
7.2
7.3
7.4
7.5

Depression
AnxietyConfusion
Delirium
Dementia (psychological aspects)

118
122
123
124
126

8

FAMILY SUPPORT

129

8.1
8.2
8.3
8.4

What is a family?
Families and a palliative approach
Documenting family relationships
Family involvement

129
129
131
132

iv 		 Guidelines for a Palliative Approach in Residential Aged Care

9

SOCIAL SUPPORT, INTIMACY AND SEXUALIT Y

135

9.1 Social isolation and social support
9.2 Intimacy and sexuality
9.3 Confidentiality

135
136
140

10 ABORIGINAL AND TORRES STRAIT ISL ANDER ISSUES

143

10.1 Background10.2 Providing appropriate support

143
144

11 CULTURAL ISSUES

147

11.1 Transcultural communication
11.2 Assessment
11.3 Management
11.4 Interpreter services

148
149
149
150

12 SPIRITUAL SUPPORT

151

12.1 Assessment
12.2 Management
12.3 Chaplains and pastoral care workers

151
153
154

13 VOLUNTEER SUPPORT

157

14 END - OF -LIFE (TERMINAL) CARE

161

14.1 What is optimal end-of-life care?
14.2 Recognising when a resident is dying
14.3 Medication issues
14.4 Management of end-of-life care
14.5 Preparing for imminent death — practical considerations
14.6 Signs of death
14.7 Care after the resident has died14.8 Summary

161
162
164
165
169
169
170
170

15 BEREAVEMENT SUPPORT

173

15.1 Characteristics of grief, loss and bereavement
15.2 Extreme grief
15.3 Assessment
15.4 Management

173
175
176
176

Guidelines for a Palliative Approach in Residential Aged Care

16 MANAGEMENT ’S ROLE IN IMPLEMENTING A PALLIATIVEAPPROACH

183

REFERENCES

185

GLOSSARY215

APPENDICES
A
B

G
H
I
J
K

Working party of the Australian Palliative Residential Aged Care Project
The Australian Government Project Reference Group — Terms of reference
and membership
An evaluation tool for quantitative studies
An evaluation tool for qualitative studies
Summary of the stakeholder participant groups
Summary of the frequency with which stakeholder groups participated in theguideline refinement process
An example of how the Guidelines were presented to focus group participants
Useability trial — participant questions
Resource list
Examples of advance directive documents currently used in various states
An example of a Genogram

237
239
241
243
247
251

L

An example of an Ecomap

253

C
D
E
F

225
229
231
233
235

LIST OF TABLES
1

Search terms

18

2
3
4
5

Quantitative levels of evidence
Quality criteria for quantitative levels of evidence
Qualitative levels of evidence
A practical model of dignity-maintaining interventions regarding illness andageing considerations
A practical model of dignity-conserving interventions regarding psychologicaland spiritual considerations
A practical model of social dignity-conserving interventions regarding social
considerations
Common myths and counter-facts regarding pain management
Pathophysiological classifications of pain, classification characteristics andexamples and recommendations for referral
Common myths regarding the use of opioids
Meals on Wheels: Treatable causes of malnutrition in RACF residents
Tube feeding decision aid

20
21
22

6
7
8
9
10
11
12

vi 		 Guidelines for a Palliative Approach in Residential Aged Care

48
49
50
73
75
83
89
92

13
14
15
16
17
18
19
20
21
22
23

Principles to guide discussions and decisions regarding hydration
The D-E-N-T-A-L self-report questionnaire
Symptoms of depression — adaptation from DSM-IV
Mental Health Inventory (MHI) (1-item version)
Distinguishing delirium from dementia
The PLISSIT Model
How to assess spiritual needs
Spiritual interventions to support residents
Grief, loss and bereavement indicators
Psychological characteristics in griefCommon grief reactions

95
102
119
120
125
138
152
153
174
174
175

LIST OF FIGURES
1
2
3
4

Guideline development decision making process
Algorithm for treatment of breakthrough (episodic) pain
The WHO analgesic ladder for pharmaceutical treatment of pain
General trajectories of function and wellbeing over time in eventually fatal
chronic illnesses

29
76
81
163

LIST OF VIGNET TES
1
2
3
4
5
6

James
RobertMrs Adams
Mr Jones
Anna
Mr Johnson

7
8
9
10
11
12
13
14
15
16

Mrs Harris
Mr Poulton
Joan
DoreenThe Masquerade Ball
Cultural understandings
Jack
AlisonJoyce and Miss Walker
Frank and Andrew

Quality of life
Desire to die statements
Advance care planning
Family involvement in advance care planning
Family involvement for residents with dementia
Benefits of a palliative approach for management ofresidents with pain
The need for comprehensive assessment of pain
Assessing a resident’s psychological distress
Caring and supporting family members
Initiating family involvement in their relative’s care
Providing various opportunities for social contact
Providing care that is culturally appropriate
Regular assessment of the need for spiritual support
Providing appropriate spiritual support
The benefits of volunteer involvement
Appropriate involvement of volunteers

Guidelines for a Palliative Approach in Residential Aged Care

51
52
56
59
67
72
80
118
131
132
139
148
153
154
157
158

vii

17
18
19

Ann and Mr Wells’ family Helping families to face the imminent death oftheir relative
Reflections
An example of a memorial service
MollieProviding appropriate bereavement supportviii 		 Guidelines for a Palliative Approach in Residential Aged Care

164
178
180

LIST OF ABBREVIATIONSAIHWAustralian Institute of Health and Welfare

CAM

Complementary and alternative medicine

EN

Enrolled Nurse

EO

Expert opinion

GP

General Practitioner

NCISN

National Consultative Information-Sharing Network

NHMRC

National Health and Medical Research Council

QE

Qualitative evidence

QOL

Quality of life

RACF

Residential aged care facility

RCT

Randomised controlled trial

RN

Registered Nurse

SSRI

Selective serotonin re-uptake inhibitors

TENS

Transcutaneous electrical nerve stimulation

WHO

World Health Organization

Guidelines for a Palliative Approach in Residential Aged Careix

IMPORTANT NOTICEOn 8 December 2005, the National Health and Medical
Research Council approved these guidelines. This meansthat the NHMRC considers that the information containedin this second edition has undergone vigorous scientificscrutiny and is based on the best scientific evidence available
at the time of compilation.
There have been some minor amendments made to thefirst edition, however, these are not dramatic changes anddo not affect practice.
Your feedback on this edition would be appreciated.
A form for your use is at the back of this document.

Foreword

Palliative care as a specialty continues to evolve in Australia and this has resulted in community
expectations that people with a life-limiting illness can live until they die in an atmosphere of careand support. These guidelines, approved by the National Health and Medical Research Council(NHMRC), are already making a difference to care across Australia.
As health professionals continually strive to improve the delivery of palliative care, there is a
widespread recognition that the benefits of palliative care are not limited to the final days andweeks before dying. In response to this, there has been a shift in the provision of palliative careas health providers’ move towards providing a palliative approach. A palliative approach can help
reduce the suffering of many people and encompasses a positive and open attitude towards livingin the shadow of death and dying. Increasingly, residents of aged care facilities are older and frailer,with complex co-morbid conditions. Staff are constantly faced with the challenge of meeting thecomplex care needs of this diverse group of people.
A palliative approach has much to offer to residents, their families and staff in our aged care facilities.
These evidence-based guidelines, developed by the Australian Palliative Residential Aged Care
(APRAC) project team, aim to provide support and guidance for the delivery of a palliative approachin the 3,000 residential aged care facilities across Australia. Until the guidelines’ production,evidence-based guidelines for the implementation of the palliative approach in the residential agedcare facility did not exist anywhere in the world. The guidelines incorporate the best scientificevidence available regarding all facets of a palliative approach, including early identification andtreatment of physical, cultural, psychological, social and spiritual needs. Importantly, these guidelines
are consistent with Goal Two of the National Palliative Care Strategy — to support continuous
improvement in the quality and effectiveness of all palliative care service delivery across Australia.
The guidelines also represent an important contribution to Palliative Care Australia’s mission to
improve palliative care options available to ALL Australians through advocacy and setting highstandards for practice, policy, research, and community development.
Developing the guidelines involved a broad consultation process that included both the palliative
and aged care sectors. The thoroughness of this massive task is best recognised in the approval

Guidelines for a Palliative Approach in Residential Aged Careachieved for these guidelines from the NHMRC. I would like to commend all of those involvedin this project, especially from community organisations. I would also like to pay tribute toProfessor Linda Kristjanson for her leadership and vision.
These guidelines are not prescriptive; rather, their intent is to provide guidance and support to all
those caring for people with a life-limiting illness or condition in residential aged care facilities.
I trust that they will offer a great deal to health care workers, families, carers and residents. I
encourage you to become familiar with them, to make them readily accessible, and to refer tothem when delivering a palliative approach.

Professor David Currow
President, Palliative Care Australia
May 2006

 		 Guidelines for a Palliative Approach in Residential Aged CareIntroduction

What is palliative care?
The World Health Organization (2003)[1] defines palliative care as:“An approach that improves the quality of life of individuals and their families facing the
problem associated with life-threatening illness, through the prevention and relief of sufferingby means of early identification and impeccable assessment and treatment of pain and otherproblems, physical, psychosocial and spiritual”.
WHO (2003) further states that palliative care:[1]• provides relief from pain and other distressing symptoms;• affirms life and regards dying as a normal process;• intends neither to hasten nor 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 theirown bereavement;• uses a team approach to address the needs of patients and their families, including• bereavement counselling, if indicated;• will enhance quality of life and may also positively influence the course of illness; and• 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 thoseinvestigations needed to better understand and manage distressing clinical complications.
This recent definition and description of palliative care asserts that, contrary to earlier
definitions, individuals with diseases other than cancer that have a terminal phase and areprogressive in nature would benefit from the philosophical underpinning of the palliative
approach.[2] These include chronic obstructive pulmonary disease (COPD), Alzheimer’s disease,and acute massive cerebrovascular accident, to name a few.[3]What is a palliative approach?
A palliative approach aims to improve the quality of life for individuals with a life-limiting
illness and their families, by reducing their suffering through early identification, assessment
and treatment of pain, physical, cultural, psychological, social, and spiritual needs.[4] All these

Guidelines for a Palliative Approach in Residential Aged Carefacets of a palliative approach are considered in their relevant chapters in this document;
however, the reader should also consider cultural issues as integral to care provision, particularly
when implementing any part of these guidelines.
Underlying the philosophy of a palliative approach is a positive and open attitude towards deathand dying. The promotion of a more open approach to discussions of death and dying between
the aged care team, residents and their families facilitates identification of their wishes regarding
end-of-life care.
A palliative approach is not confined to the end stages of an illness. Instead, a palliative
approach provides a focus on active comfort care and a positive approach to reducing an
individual’s symptoms and distress, which facilitates residents’ and their families’ understandingthat they are being actively supported through this process.[4]The need for a palliative approach
In Australia, over the last two decades, research has indicated that the proportion of people
dying in RACFs has steadily increased.[5] This has led to the recognition that a palliative
approach enhances the care already provided to both residents and the families.[6,7]Due to the type of residents they support, RACFs face unique and significant difficulties inusing a palliative approach. Not only do the majority of residents have dementia; they generally
have co-morbidities (other diseases) that involve dealing with physical, psychological, emotionaland social issues. The residents are generally highly dependent and require many medications,further complicating the provision of a palliative approach.[3]Residents in RACFs may also require a palliative approach when they are dying due to theageing process, that is, not only as a consequence of an incurable disease. Older persons who are
dying are considered to have different palliative needs to those people diagnosed with cancer.[8]These differences may include, that:[8]• they have multiple clinical diagnoses that require a variety of treatments;• they require end-of-life (terminal) care for a shorter length of time (an average time of twodays of intense care prior to death);• confusion, dementia, and/or communication difficulties may be present; and• some lack family support.
Therefore, there is a special need for older persons with a life-limiting illness or who are dying asa consequence of the ageing process to receive a palliative approach.

The need for evidence-based guidelines for aged care facilities
Although separate Australian standards for aged care and standards for palliative care exist,
these do not fully address the unique and complex issues associated with providing a palliative
approach within an RACF. The aged care literature calls for the development of guidelines forappropriate care of older persons by non-specialist palliative teams, but to date no guidelines
for implementing a palliative approach in aged care facilities have been created. As well, there 		 Guidelines for a Palliative Approach in Residential Aged Careare no specifications for how members of an aged care team in an RACF should be trained
to provide a palliative approach to these residents. Finally, there is no systematic approach topalliative education for this workforce.
The APRAC Project was established in response to recognition that there was a critical need fora palliative approach in residential aged care.

Using these guidelines
These evidence based guidelines are intended to help aged care team members in applying apalliative approach in a residential aged care facility (RACF). They cover all major aspects ofproviding a palliative approach for an RACF resident, from attending to physical symptoms(e.g. fatigue, dehydration) and spiritual needs to dealing with the reactions of family members.
Each chapter deals with a major issue, discussing the issue in detail then stating some guidelinesthat encapsulate the ‘message’ of that chapter (though Chapter 6, which devotes a section toeach physical symptom, has guidelines at the end of each section). For quick reference there isa Summary of Guidelines at the front of the document, though the guidelines are much better
read in conjunction with the detail given in the chapters.
The guidelines are not meant to be rigid, prescriptive pathways on ‘what must be done’ in an
RACF. Rather, they aim to prompt creative solutions that will be appropriate to the particular
RACF in which a palliative approach is being applied. They may also be used to identify
strengths and weaknesses of the approach being taken, and provide a mechanism for change
and evaluation over time.
The guidelines have been developed after a major search and study of the relevant literature (seeChapter 1), so that aged care team members can see at a glance whether there is research-based
support for the practices and beliefs common in a palliative approach. Within the text of thisdocument, each study referred to is given a number that corresponds with the numbers listed
under the References at the end of this document. The level of evidence is stated beside thereference. This level of evidence is based upon the NHMRC (1999)[9] evidence levels as follows:
Level IA systematic review of all relevant randomised controlled trials (RCT).

Level IIAt least one properly designed RCT.

Level III-1

Well-designed pseudo-RCTs.

Level III-2

Comparative studies with concurrent controls and allocation not
randomised, case-control studies, or interrupted time series with acontrol group.

Level III-3

Comparative studies with historical control, two or more single-arm
studies, or interrupted time series without a parallel control group.

Level IV

Case series, either post-test or pre-test and post-test.

Guidelines for a Palliative Approach in Residential Aged Care

Additional levels of evidence
The NHMRC (1999)[9] levels of evidence are appropriate for quantitative studies. However, theresearch area of palliative care is relatively new and there is a notable lack of high level evidence.
As well, in some instances use of a qualitative design is more appropriate given the study
question and the vulnerability of the population. The review working party identified a numberof studies that were not quantitative in design, but were useful for inclusion in this review. The
review working party applied a modified version of the Cochrane Collaboration (2002)[10] andCampbell Collaboration (2002)[11] guidelines to provide an appropriate evaluation tool for use
with qualitative studies in this review (see Chapter 1). Qualitative evidence that is referred to inthis document may appear as “Level QE”, which is an abbreviation of the term.
‘Expert opinion’ articles that were neither quantitative nor qualitative, but instead contained
an opinion from an expert or a panel of experts in a particular field, were included when there
was consensus by the project working party. (Because expert opinion is generally the resultof experiential knowledge, it was considered essential to the guidelines’ development andaccordingly, has been included in the preamble for each chapter. However, as the expert opinion
was not research based, it was not used as the basis for any guidelines.) Where expert opinion
has been cited, the abbreviation “Level EO” is used.

 		 Guidelines for a Palliative Approach in Residential Aged Care

Summary of Guidelines

The following table provides a summary of the guidelines with their corresponding level/s ofevidence as presented in this document. To understand the context of the guidelines, readers arestrongly urged to review the appropriate chapter.
Guidelines

Ref No.

Evidencelevel

A PALLIATIVE APPROACH
When should a palliative approach be implemented?
1.

Methods used to identify survival time, such as physicians’ clinicalpredictions, have limitations in accuracy and precision resulting inoverestimating survival. Therefore, relying only on these methods todetermine when to start a palliative approach is not recommended. Agedcare team members need to be aware of this tendency to overestimate
survival, to reduce residents’ and families’ potential distress.

38

IV

2.

Attention to residents’ transition from active curative care to palliative care(with comfort care and symptom management) requires that aged care teammembers provide the resident and their families with sufficient information
about the transition process to facilitate decision making. This provision of
information can reduce residents’ and families’ concerns and increase theirsatisfaction regarding the appropriateness of a palliative approach.

24, 35

QE

6, 23

QE

50

III-2

Where can a palliative approach be provided?
3.

A palliative approach can be provided in the resident’s familiar
surrounding if adequately skilled care is available, which reduces the needfor transfer to an acute care setting; thereby, avoiding potential distress to
the resident and his/her family.

Who can provide a palliative approach?
4.

A palliative approach is best provided by an effective multidisciplinary team.

DIGNITY AND QUALITY OF LIFE
5.

Factors that contribute to a person’s sense of dignity are a sense ofcontrol, strengthened relationships with loved ones, the capacity tocommunicate, recognising friends and family members, being continent,
adequate pain and symptom management, and avoiding inappropriate
prolongation of dying. These factors are addressed by the aged care teammember when a palliative approach is implemented, thus enhancing theresident’s dignity and his / her quality of life.

58
57
13

III-3
IV
QE

6.

The provision of dignity-maintaining care can facilitate a more hopeful outlook
for the resident; thus reducing the resident’s desire for a hastened death.

63
64

IV
QE

Guidelines for a Palliative Approach in Residential Aged Care

Guidelines

Ref No.

Evidencelevel

ADVANCE CARE PLANNING
7.

Systematic implementation of advance care planning that involves
communication between the resident, family, and doctor increases
satisfaction with the care provided to the resident and his / her family.

68, 73II

8.

Regular education programs for the aged care team and residents andtheir families on issues about end-of-life care and advance care plansincreases the frequency of these plans being completed and implemented,
which increases the resident’s and his / her family’s satisfaction with
end-of-life care.

68

II

9.

Developing comprehensive advance care plans that include ongoingassessments responds to changes in the resident’s health and increases
the resident and his / her family’s satisfaction with care.

68

II

ADVANCED DEMENTIA
10.

For residents with advanced dementia, the implementation of a palliative
approach that incorporates ongoing assessment, attention to distressing
symptoms, avoidance of hospitalisation and which emphasises andpromotes the resident’s quality of life and dignity will benefit the family aswell as the resident.

86

QE

11.

Remaining in their familiar surroundings is beneficial for residents withadvanced dementia because this helps maintain their care plans andfacilitates residents’ feelings of orientation and security.

83

II

12.

Assessment of residents with advanced dementia using dementia-specificpain assessment tools results in more attentive symptom relief for painand discomfort.

93

IV

13.

Aggressive medical treatment of infections is not recommended forresidents with advanced dementia. Instead, a palliative approach issuggested for the resident’s comfort, which might include short-term
antibiotic therapy to ease symptoms and improve quality of life.

44, 50

III-2

14.

The use of restraints within RACFs is associated with adverse outcomes forresidents such as an increase in distress and the risk of injury. Developinga policy of restraint-free care that includes strategies and an education
program to minimise restraint use can reduce residents’ distress and therisk of falls-related injuries.

102 104II

PHYSICAL SYMPTOMS — ASSESSMENT AND MANAGEMENT
Symptom Assessment
15.

The development of a treatment plan that is based on a comprehensive
and ongoing assessment of a resident’s needs and wishes, which includes
early identification of the main symptoms, provides effective symptom
management in accordance with the resident’s goals for care and their
specific treatment preferences.

112

IV

16.

Implementation of a palliative approach that includes adequate relief ofpain and effective symptom management increases residents and theirfamilies’ satisfaction with the care that is provided.

110

IV

 		 Guidelines for a Palliative Approach in Residential Aged Care

Guidelines

Ref No.

Evidence
level

17.

A simple method for regular assessment of symptom distress is to ask
residents for their own determination of the intensity of their physical andpsychological distress. Regular assessments will improve the effectivenessof symptom management and enhance residents’ quality of life.

116

III-3

Pain Management
18.

A comprehensive assessment of the resident’s pain and the use ofevidence-based analgesic decision-making provide enhanced pain
management, thereby improving the resident’s quality of life.

145

II

19.

For residents unable to verbalise their pain, accurate reporting based on
observations by a skilled person using behavioural cues is particularly
important in determining pain. The use of appropriate assessment tools
will increase the frequency with which pain is diagnosed when comparedwith asking the resident “Do you have pain?”

137

III-3

164 170

IV
QE

Fatigue
20.

Fatigue is the most frequently reported physical concern by individuals
nearing death. Therefore, careful assessment is required of factors that may
indicate or bring about fatigue (e.g. depression, anxiety, pain, a reduction inintermediate activities of daily living, and number of medications), which will
enhance early identification and management of fatigue.

Nutrition and Hydration
Nutrition
21.

Good nutritional care requires an individualised approach that includes
early recognition of weight loss and the identification and managementof likely causes (e.g. adverse medication effects, poor oral health ordepression). This careful attention to assessment and management ofresidents’ nutritional requirements improves quality of life.

176 181

II
IV

22.

Giving residents oral foods and fluid, even in small amounts, is preferable
to using more invasive enteral (e.g. nasogastric or PEG) feeding methods.
However, a dysphagia assessment is essential to provide direction for oral
feeding.

176 104

II
III-1

23.

The aged care team member assisting with feeding should be seated at
eye-level with the resident and take time to establish and maintain arelationship with the resident to create an atmosphere that is conducive
to relaxing the resident. This approach to feeding enhances the resident’s
nutritional intake and improves his / her social well-being.

104

III-1

Hydration
24.

Recommendations regarding fluid therapy that are based on an ongoingassessment of each resident’s circumstances, including the resident’s
and family’s treatment preferences, improve the resident’s and family’ssatisfaction with the care that is provided.

204

IV

25.

Regular presentation of fluids that include strategies such as a colourful
beverage cart, verbal prompting or complying with residents preferences
will increase the amount of oral fluid intake for those residents able tohave oral hydration.

202
209
208

II
III-1
IV

26.

Frequent small sips of fluids can reduce the resident’s sensation of thirstand oral discomfort that is associated with dehydration.

185

IV

Guidelines for a Palliative Approach in Residential Aged Care

Guidelines

Ref No.

Evidencelevel

Cachexia
27.

A review of a resident’s clinical history, the presence of substantial weight
loss, laboratory tests and physical examination are required to make anaccurate diagnosis of cachexia.

212

II

28.

For frail residents with substantial weight loss who are unable tohave sufficient oral calories, a trial of single nutrients or liquid meal
replacements is an appropriate alternative.

176

II

Dysphagia
29.

A formalised multidisciplinary management program that includes input
from a speech pathologist is beneficial in promoting early recognition,
appropriate management and prevention of complications associatedwith dysphagia.

104

III-1

30.

Safe feeding techniques that are recommended by a speech pathologist
or physician, which include the method of feeding and the texture,
consistency, and type of food and fluid, should be undertaken asprescribed to reduce the resident’s risk of aspiration.

104

III-1

Mouth Care
31.

Good oral hygiene, regular assessment, cleansing of dentures and oral
fluids can reduce oral complications.

221

IV

32.

Oral health assessments that include the question, “How would you
describe the health of your teeth and gums? Would you say it is excellent,very good, good, fair or poor?” for residents who are able to respondincreases accuracy in identifying residents who require further evaluationand dental treatment.

222

IV

33.

Rinsing the mouth with water and cleansing teeth with a soft toothbrushand toothpaste is an effective oral cleansing routine that is cost-efficientand reduces the resident’s risk of oral mucositis (mouth ulcers).

225

II

Skin Integrity
34.

The use of high specification foam mattresses rather than standard foam
mattresses can reduce the incidence of pressure ulcers.

226

I

35.

The use of Australian Medical Sheepskins (natural not synthetic fibre) may
be effective in reducing the incidence of pressure ulcers for those people
who are at low to moderate risk of developing these ulcers.

226
227

I
II

Bowel Care
36.

Eliciting information that includes a history of residents’ bowel habits
and their preferences for treatment, an awareness of complementary
methods of bowel care (e.g. low-intensity exercise, abdominal massage
and hot packs) and better documentation procedures, will improve bowel
management and residents’ well-being.

235, 238
234, 237

II
QE

37.

Discussion between the doctor and nursing staff about the mostappropriate laxative for use with a resident will enhance management
decisions regarding bowel care.

237

QE

38.

The combined use of bulk laxatives and suppositories is associated withthe lowest rates of faecal incontinence. The use of suppositories after
bowel clearing can prevent recurrent constipation.

237

QE

39.

Where a laxative is used, appropriate compensatory measures should betaken to avoid dehydration and electrolyte depletion.

235 237

II
QE10 		 Guidelines for a Palliative Approach in Residential Aged Care

Guidelines

Ref No.

Evidencelevel

Dyspnoea
40.

A comprehensive plan of care including ready access to appropriate
medication, plus non-pharmacological interventions to reduce
psychological distress, may prevent residents with gradually increasing
dyspnoea being unnecessarily transferred to hospital.

240

IV

41.

A physical examination and a complete history that covers factors thatare likely to have influenced the severity of the symptom, including
pre-existing illnesses and exacerbating factors will provide sufficient
information to accurately determine a diagnosis of dyspnoea.

240

IV

42.

Non-pharmacological interventions based on psychosocial support,
controlled breathing and learned coping strategies can help residents copewith dyspnoea, which will reduce their physical and emotional distress.

239, 244

II

43.

The use of sustained-release low-dose oral morphine administered orally
or parenterally can benefit individuals with dyspnoea by reducing theseverity of their symptoms and improving the quality of their sleep.

160

II

Complementary therapies
44.

Generally, those who are unable to tolerate or who refuse pain
medications as part of a palliative approach may benefit from appropriate
complementary therapies. These therapies may also fit better with
culturally specific preferences and enhance resident’s sense of control.

246

II

45.

The combination of traditional analgesic treatments with acupuncture,
TENS, relaxation and imagery, and hypnosis may be helpful for symptom
management because they may reduce intractable pain, thereby improving
quality of life.

246

II

46.

The use of acupuncture, acupressure, and muscle relaxation with rebreathing
training or rebreathing training combined with coping strategies may reduce
dyspnoea and improve function (e.g. walking ability).

246

II

47.

The use of aromatherapy massage for residents with advanced dementia
may reduce the incidence of disturbed behaviour, the level of anxiety andimprove quality of life.

247
249
248

II
II
III-1

48.

A massage with essential oils is beneficial for reducing levels of anxiety
and improving quality of life for people receiving a palliative approach.

247
250

II
III-1

49.

The use of Ginkgo for older persons with mild to moderate dementia orage-associated memory impairment is not recommended because it was
found to have no beneficial effects.

258

II

PSYCHOLOGICAL SUPPORT
Depression
50.

The use of the Geriatric Depression Scale to screen residents for depression
can increase the frequency with which treatment is provided for thisdisorder by prescription or via referral to appropriate health care providers.

278

II

51.

Suicide attempts or requests for a hastened death are often an indicationof clinical depression. An active response that addresses depression,
hopelessness, and social support can improve the resident’s wellbeing andreduce the desire for a hastened death.

63

IV

Guidelines for a Palliative Approach in Residential Aged Care

11

Guidelines

Ref No.

Evidencelevel

Anxiety52.

Gentle massage can reduce anxiety levels or agitated behaviours forresidents with chronic pain and / or dementia.

290

IV

291
294

III-2
IV

299

IV

271, 300

QE

Delirium53.

A thorough assessment of the symptoms of delirium is required, which
includes consideration of the persistence of symptoms (e.g. inattention,
disorientation, and impaired memory) to accurately and quickly detectdelirium in older persons, which increases residents’ frequency oftreatment and referral.

Dementia
54.

Many residents can answer questions regarding their quality of life evenwhen significant symptoms of dementia are present. Therefore, a resident’s
preferences for quality of life concerns should still be sought and incorporated
in decision-making to improve their satisfaction with the care they receive.

Psychological distress
55.

Incorporating the use of a specialised palliative team who have some expertisein the assessment and care of those with depression, agitation, loss and / oranxiety is beneficial for residents who require a palliative approach.

FAMILY SUPPORT
56.

Involving the family to assist with symptom distress, communicating andassisting with the physical care needs of the resident can improve theaged care team members’ relationship with the family.

322
313

III-2
QE

57.

Health deterioration and the death of the resident may impact upon
the physical and emotional health of family members. Family members’depression and health problems should, therefore, be informally monitoredby the aged care team and, where appropriate, support provided to offset
the effects of caregiving stress.

304
324
309

III-2
III-3
QE

58.

Families appreciate good communication with the aged care team,affirmation that their input is valued, and permission to withdraw at times
from the caregiving situation. When these needs are addressed families
experience increased satisfaction with care.

306, 307,
325

QE

59.

Family conferences can provide emotional support to family members andan opportunity to discuss concerns about the resident’s illness / ageing
process. Such discussion benefits families and ultimately improves thequality of life for the resident.

308, 322
107, 313

III-2
QE

332, 333

IV

SOCIAL SUPPORT, INTIMACY AND SEXUALITY
Social Support
60.

A lack of social support may lead to deteriorating psychological wellbeing,
depression, and diminished functional health. Therefore, a thoroughassessment of the resident’s social network is required, including theresident’s perception, appraisal and interpretation of the contact that ismost important to them. Appropriate interventions can then be undertakenwith a view to arresting / improving the resident’s condition.

12 		 Guidelines for a Palliative Approach in Residential Aged Care

Guidelines

Ref No.

Evidence
level

Intimacy61.

The use of comfort touch (e.g. massage, hand-holding) by the aged careteam can enhance residents’ sense of well-being and self-regard.

290, 338
336

IV

336, 337,
341

QE

Sexuality
62.

Aged care teams who have received ongoing education regarding theimportance of residents’ intimacy and sexuality needs and who are
discrete when sharing such information with their colleagues, provide
residents with more holistic care; thereby improving residents’ well-being.

ABORIGINAL AND TORRES STRAIT ISLANDER ISSUES
63.

Respectful attention to the individual needs of Indigenous Australianresidents, taking into account their beliefs regarding illness, healing,
comfort, care practices, location of care, and death and dying is required
to provide Aboriginal and Torres Strait Islander residents with culturally
appropriate and satisfactory care.

133

QE

64.

Aboriginal health workers, liaison officers, other Indigenous Australian
health care practitioners and community organisations have important
knowledge about local cultural values and individual situations andshould be involved when developing protocols and when working with
Indigenous Australian residents to deliver the best possible care.

133

QE

65.

Regular review of Indigenous Australian residents’ needs is required
because their needs may change over time. Communication in theresident’s own language will enhance understanding and attention to his /her needs.

133

QE

CULTURAL ISSUES
66.

Education about cultural diversity is recommended for aged care teams
to enhance understanding of care preferences of residents from varying
cultural groups. Efforts to accommodate these preferences promoteindividualised care that benefits the residents’ and their families’ wellbeing.

356, 361

QE

67.

Where possible, provide information about a palliative approach toresidents from culturally and linguistically diverse backgrounds in theirown language because this enhances cultural sensitivity for residents andtheir families and ensures adequate and appropriate care.

359
356

II
QE

SPIRITUAL SUPPORT68.

A multidisciplinary aged care team that responds in an open, nonjudgmental manner to residents’ questions regarding spiritual needs,
and that involves a chaplain / pastoral care worker with experience andknowledge of spiritual issues, is likely to provide appropriate spiritualsupport to residents, which will enhance their quality of life.

371
367, 380

IV
QE

69.

A palliative approach supports residents and families to express theirunique spirituality. Respecting their privacy and providing an opportunity
for them to continue their spiritual practices enhances a resident’s spiritualcare and their quality of life, as does spiritual counselling.

371
367, 369

IV
QE

Guidelines for a Palliative Approach in Residential Aged Care

13

Guidelines

Ref No.

Evidence
level

70.

Understanding the resident’s current or desired practices, attitudes,
experiences and beliefs by obtaining a comprehensive history, assists inmeeting the spiritual needs of a resident, as does a regular review.

371
367, 373

IV
QE

VOLUNTEER SUPPORT71.

The integration of trained volunteers into multidisciplinary teams canenhance the provision of a palliative approach to residents.

384
383

IV
QE

72.

Ongoing support and education from a trained coordinator ofvolunteers will increase the effectiveness of volunteers as members of amultidisciplinary team providing a palliative approach.

384
383

IV
QE

73.

Suitably screened and matched volunteers may act as companions andconfidants, which can help residents and their families to feel more
supported.

384
383, 388

IV
QE

241, 409

QE

308
309

III-2
QE

END-OF-LIFE (TERMINAL) CARE74.

To be actively “doing everything” for a dying resident, in terms of
medication, positioning, and other medical and nursing interventions,
together with talking to, and spending time or being present with theresident helps family members cope with the dying process.

75.

Well planned family conferences, conducted in private and attended by the
GP and other members of the aged care team, provide an opportunity forbuilding trust and discussing end-of-life issues of concern, which improves
the family’s satisfaction with the care that is provided.

BEREAVEMENT SUPPORT76.

Members of the aged care team can experience loss following the deathsof residents with whom they have established meaningful relationships.
Therefore, they may require opportunities to formally acknowledge theirloss and access to adequate bereavement support to reduce their levels ofdeath anxiety and their risk of complicated grief. Aged care team members
who have experienced many deaths may still require access to these
support services.

429,
433, 437

QE

77.

A memorial service is a useful ritual to assist in bereavement support ofresidents, family members, the aged care team, and volunteers because it
facilitates the grieving process and reduces levels of death anxiety and therisk of complicated grief.

433, 435

QE

78.

The greater the level of social support that a family can access, thebetter their ability to cope with the bereavement of their family member;
however, it is the quality of the support rather than the quantity thatenhances this resilience.

414
399, 413

IVQE

6, 447,450

QE

MANAGEMENT’S ROLE IN IMPLEMENTING A PALLIATIVEAPPROACH
79.

Implementation of formal management systems in RACFs that support
the introduction and maintenance of a palliative approach through theallocation of appropriate resources will improve residents’ and families’
satisfaction and enhance the quality of care that the aged care team isable to provide.

14 		 Guidelines for a Palliative Approach in Residential Aged Care

CHAPTER 1

Guideline development process

Introduction
There is currently no evidence-based document to guide health care providers who areendeavouring to implement a palliative approach in RACFs. Standards for Aged Care andStandards for Palliative Care exist, but these do not specifically address the unique and complex
issues related to palliative care provision that arise within RACFs. Australian RACFs have an
exhaustive accreditation process in place, which is tied to the Aged Care Act 1997 (CTH).
However, palliative practices within RACFs are still in their infancy and there is little direction
on the best practice for a palliative approach by non-specialist palliative care teams.
This chapter outlines the aim, methodology and processes that were used to complete
Component I, the development of evidence-based national Guidelines for the provision of apalliative approach to residential aged care. (This chapter does not include the full details of thesystematic review of the literature.)

Aims
The aims of Component I were to:
1. Conduct a systematic review of the literature to summarise the evidence for best practicerelating to residential aged care practices and psychosocial, cultural, Indigenous, spiritual andphysical issues, all factors that are relevant to a palliative approach. The systematic review
would involve obtaining, synthesising, and evaluating the evidence.
2. Formulate guidelines for the provision of a palliative approach to residential aged care based
upon the summarised and evaluated evidence that was gathered.
3. Identify gaps in the evidence with a view to suggesting future research directions.
4. Refine the Guidelines using consultative processes such as the NCISN members.
5. Format and present a penultimate version of the Guidelines to the DoHA.
The evidence gathered would be used to confirm or refute existing practices and makerecommendations for practice change for residents in aged care facilities whose care needs to be
managed by a palliative approach.

1.1 SYSTEMATIC LITERATURE REVIEWThis section outlines the processes used to organise, collect and evaluate the relevant literatureincluding the search strategies, evaluation methods, collated results of the searches, andlimitations of this review process.

Guidelines for a Palliative Approach in Residential Aged Care15

1.1.1Aims

The aims of the systematic literature review were to locate and summarise evidence relating tocare practices and psychosocial, cultural, Indigenous, spiritual and physical issues relating to theprovision of a palliative approach within RACFs.
A secondary aim was to identify gaps in the evidence with a view to suggesting future research
directions.

1.1.2

Methodology

The systematic review of the literature was conducted by the review working party (South
Australian members of the project working party); however, the guideline formulation,
development and refinement was undertaken by all members of the project working party.
All available evidence pertaining to palliative care models, assessment and care practices forolder persons requiring a palliative approach was summarised. Relevant evidence included
studies that had populations with cancer and non-cancer diagnoses, multiple co-morbidities,
dementia, and in which participants were aged 65 years and older. Studies that helped to
identify the entry of an aged care resident into a phase where a palliative approach is warranted
were also considered. Documentation related to the physical, psychological, social, cultural,
Indigenous, and spiritual care needs for the person who was dying, as well as the care andsupport of the family, was also included.
Evidence based guideline development traditionally involves the search for evidence following
the definition of a clinical question. Palliative care and aged care are large and complex
academic fields and areas of clinical practice. Research in these fields crosses many disciplinesand draws on a multitude of study designs and approaches.
Without a specific clinical question to guide the search strategies, the review working party
developed a domain approach. Domains have been used elsewhere in the literature to describe
areas of clinical or patient importance in providing care at the end-of-life [12–14]. Domains
represented areas for guideline development or acknowledged areas of research.
Based upon the review working party’s preliminary content analysis of the literature, the projectworking party identified 13 domains of literature that were relevant to a palliative approach inresidential aged care, which were as follows:1.

a palliative approach, including care models and care practices,2.

assessment and management tools,

3.

co-morbidities,

4.

cognitive impairment,

5.

physical care,6.

psychosocial support,

7.

spiritual support,

8.

family / carer support,

16 		 Guidelines for a Palliative Approach in Residential Aged Care

9.

Indigenous support,

10.

cultural support,

11.

advance care plans,12.

dignity and quality of life, and13.

rural and remote issues.

1.1.3

Search Strategies

Preliminary work in searching showed that two search strategies would be necessary to capture
all the relevant literature for the development of evidence-based practice Guidelines. The first
sweep of the literature aimed to acquire relevant studies (both quantitative and qualitative)
using the above outlined domains. This top-down approach elicited articles covering a broad
range of issues. The second strategy used specific terms that emerged from articles found during
the first search strategy. This refinement addressed the specific issues found in caring for older
institutionalised persons with life-limiting conditions (e.g. Cachexia in terminal illness), or who
were dying as a consequence of the process of ageing.
The literature was searched electronically for English language articles published in peer-review
journals from 1990 to Week 3 September 2002 using the first search strategy. Additional
electronic searches using the second strategy covered the period 1990 to Week 4 September
2003. (Further searches were required due to stakeholder feedback that recommended
additional issues should have been included, such as post-bereavement support for family andfriends, continuity of care, complementary therapies, and privacy and confidentiality).
Both search strategies were conducted on databases MEDLINE, CINAHL, EMbase,
Cochrane Library and Current Contents, APAIS, DRUG, PsychINFO, and Dissertation
Abstracts International. (See Table 1 for search terms). Relevant secondary references were
included in the review.
Searches also included a hard copy search of books and publications at Flinders University
libraries (Sturt, Medical and Central) and Repatriation General Hospital libraries (Daw House
and Medical) between July 2002 and September 2003. Searches on the World Wide Web
for government and non-government publications, standards of care, existing guidelines andreports to government were also conducted between August 2002 and September 2003.

Guidelines for a Palliative Approach in Residential Aged Care17

Table 1: Search terms
Terms

Words or variations of words that were used in searches

Aboriginal

Aboriginal; Indigenous; koori

Advance Care Planning

Advance directive/s; advance care plan/s/ning; decision making; end-oflife care; legislation;

Aged care

Aged care facility/ies; gerontological care; group homes; homes forthe aged; residential facility/ies; residential care; residential aged carefacility/ies; RACF; halfway houses; health services for the aged; highlevel care; long term care; long stay homes; nursing homes; hostels

Assessment tools

Symptom assessment; tools; indicators; instruments

Australian

Australia/n; Royal College of Nursing, Australia

Bereavement

bereavement; grie/f/ve/ving; death and dying; hospice; death rit/e/s/ual/s; occupational stress; staff stress; hospital programs; memorial service;life experiences; rit/e/s/ual/s (nonreligious); symboli/c/sm; ritual referral;unresolved grief; complicated grief; at-risk population/s; treatment/s;
psychopatholog/y/ies; pathological grie/f/ving; coping behaviour/sBreast Cancer
CancerNeoplasms; cancer; malignanc/y/ies; oncology

Care Givers

Famil/y/ies; care givers

Cardiac Careheart

Clinical

Evidence; random/ised/ized controlled trials; guideline/s;

Complementary therapy

Complementary therap/y/ies; alternative therap/y/ies

CulturalMulticultural; culture/al; diversity; cultural diversity

Dementia

Dementia care; cognitive impairment

Depression

Depress/ed/ion/ing; clinical depression

Education

Train/ing; educat/e/ion/ing; skill/s/ed; staff development; in-service
training;

Hospital

Hospitals — special; teaching; urban; rural/remote; acute care setting/s

Nonclinical staff

Maintenance staff; non-clinical staff; cleaner/s/ing; gardener/s/ing; careteam/sNonprofessional staff

Domestic; non-professional/s; ancillary; uneducated; volunteer/s/ing/
ism; nurses’ aides; aides; personal care assistants; nurses’ assistants;
unregistered; care assistants

Neurological

Neurologic/al

New Zealand

New Zealand; NZ

NursingNursing role/s; terminal car/e/ing; end-of-life care; quality of nursing
car/e/ing; registered nurse/s; Registration/s

Occupational Therapy

Occupational therap/y/ies/ist; OT

Pain

Pain/s; pain management; pain assessment

18 		 Guidelines for a Palliative Approach in Residential Aged Care

Palliative care

Hospice Car/e/ing; exp palliative care; end of life; dying; death; terminal
care; palliative approach; palliation

Palliative symptomatology

Anorexia; oral care; bowel care; feeding; skin integrity; nutrition;
hydration; dysphagia; swallowing; choking;

PastoralSpiritual; pastoral; religi/on/ous; existential/ism

Prognosis

Prognos/is/tication; treatment/s

Psychological factors

Psychosocial; quality of life; psychological; psychiatric; disorders;personality

Quality

Quality improvement; quality system/s

Renal

KidneyRespiratory

Dyspnoea; breathlessness; breathing

Rural & Remote

Rural; Remote; nonmetropolitan; nonurban; country

Social WorkSocial work/er/ers; counsel/lor/s; counsel/ling

Therapeutic Environment

Person–environment fit; home environment; environment/al;
surrounding/s

Volunteer

Volunteer/s/ing/ism; non-clinical staff

Once the general framework for content was established, a process for identifying, assessing,evaluating and eliminating material in the literature review process was developed. Inclusionand exclusion criteria were established for initial decision-making on articles and abstracts.
Following a preliminary analysis of the evidence by the review working party, specific searches
on identified gaps were conducted between July 2002 and September 2003. These searches
involved specific word searches on the major electronic databases outlined above, searching ofauthor publication lists, internet searching by author and key word, review of reference lists
from related articles, searches of related websites and searches of journal title pages. Inclusionand exclusion criteria were established for initial decision-making on articles and abstracts.

1.1.4

Inclusion Criteria

Research studies (using qualitative, quasi-experimental or quantitative methodologies)
published between January 1990 and September 2003 in English peer-review journals andsystematic reviews from Cochrane Collaboration and Joanna Briggs Institute that appear
on various electronic databases were included in this review. Studies from countries withcomparable health systems and residential care facilities to Australia, with similar social orcultural values were included. The majority of articles were based in palliative care units and
RACFs. Some studies based in the acute hospital, home-based or community-based studies,were deemed transferable to the RACF if there was consensus by the project working party thatsuch articles were relevant to providing a palliative approach to residential aged care. Articles
that were based on personal, expert opinion and literature reviews were also included if the
project working party reached consensus regarding the relevance of these articles as backgroundinformation for various domains reviewed. However, these articles were not used as the basis for
guideline development, because these articles were not research based.

Guidelines for a Palliative Approach in Residential Aged Care19

1.1.5

Exclusion Criteria

Although the academically accepted 5-year norm for the cut off date was considered, the review
working party adopted 1990 as the cut-off date for exclusion of studies based on the significant
seminal work completed in the early 1990s in palliative care. Hence, studies prior to 1990 havebeen excluded from this review unless they were considered by the project working party to besignificant seminal work. Articles published in languages other than English were excluded aswere unpublished studies.

1.1.6

Evaluation Strategies

No suitable tool was available to assess quantitative studies according to NHMRC (1999)[9]criterion of quality, strength or relevance. To overcome this difficulty, the Cochrane[10] andCampbell [11] Guidelines were substantially modified by the review working party to provide anevaluation tool that was appropriate for intervention studies (quantitative) (See Appendix C).

Quantitative Evidence
The tool that was developed for use with intervention studies used the level of evidence
categories outlined by the NHMRC [9] directly as shown below:
Table 2: Quantitative levels of evidence

LevelsCriteria

I

Systematic review of all relevant randomised controlled trials (RCTs)II

At least one properly designed RCT

III-1

Well-designed pseudo-RCT

III-2

Comparative studies with concurrent controls and allocation not randomised, case-control
studies or interrupted time series with a control group

III-3

Comparative studies with historical control, two or more single-arm studies, or interrupted
time series without a parallel control group

IV

Case series, either post-test or pre-test and post-test

To measure the quality, strength and relevance of quantitative studies, additional criteria weredeveloped by the review working party (these criteria were not part of the NHMRC [1999]
levels of evidence), as shown in the following table.

20 		 Guidelines for a Palliative Approach in Residential Aged Care

Table 3: Quality criteria for quantitative levels of evidence

Explanation
Quality

This rating refers to the quality of the methods used in a study to minimise
bias. (Score range 1 to 4 with 4 being high quality.)Strength

This classification refers mainly to the magnitude of the intervention effect.
(Score range 1 to 4 with 4 being highest strength.)

Relevance

This rating refers to the relevance of outcome measures and the applicability ofthe study results to the clinical question and the clinical setting. (Score range 1
to 4 with 4 being highest relevance.)

Qualitative Levels of Evidence
Qualitative studies are usually descriptive with the aim of providing a context for people’s
experience and behaviours through analysis that is detailed, ‘rich’ and integrative. Examples ofqualitative studies include observational or case study methods that explore comparisons withina group to describe and explain a particular phenomenon (e.g. comparative case studies withmultiple communities).
It has been suggested that RCTs are impracticable for studies regarding a palliative approachdue to ethical and methodological difficulties, such as early deaths, difficulties in recruitmentof participants, and a low compliance rate for completion.[15] Many research questions about
a palliative approach have been addressed using qualitative designs such as surveys, and audits;
however, the NHMRC (1999)[9] criteria does not have any provision for the inclusion ofqualitative studies. Nonetheless, the project working party agreed that it was necessary toinclude and evaluate such evidence because a systematic review based only on data from RCTs
can be problematic. For example, specific palliative care issues may not have been studied using
these methods or are very difficult, if not impossible to locate, because they are not on the main
search engines used for literature reviews.[10] Additionally, there may be insufficient informationfrom RCTs regarding rare side-effects or long-term benefits of an intervention (because RCTs
are generally about short-term results from interventions).[10]The project working party included qualitative studies when reviewing the evidence, because of theimportant role that these types of study provide. According to the Campbell Collaboration (2002)[11]
incorporating relevant qualitative studies in a systematic review is beneficial because it can:(a) Contribute to the development of a more robust intervention by helping to define anintervention more precisely;(b) Assist in the choice of outcome measures and assist in the development of valid researchquestions; and(c) Help to understand heterogeneous results from studies of effect.
However, the inclusion of evidence from qualitative studies while resolving some of theshort-comings of quantitative studies also raises some concerns, such as the potential for biases

Guidelines for a Palliative Approach in Residential Aged Care21

in the methodology that may invalidate the conclusions.[10] To overcome this problem, theproject working party determined that qualitative evidence would need to be reviewed andexamined by the review working party using criteria to measure the quality of these studies.
No appropriately validated tool existed that could measure the quality of research studies
that were not of an empirical design (qualitative studies). Therefore, the review working party
substantially modified the Cochrane Collaboration (2002)[10] and Campbell Collaboration(2002)[11] guidelines to provide an appropriate evaluation tool (see Appendix D).
Because the level of evidence determines the quality for qualitative studies (designated as QE),
a single category was created that contained eight questions regarding the aim of the study
and the appropriateness of the methodology that was used (see Table 4). Each question in thiscategory required the reviewer to answer ‘yes’ or ‘no’ with yes scoring 1 and no scoring 0. The
score range for the level of evidence was 0 to 8 with 8 being the highest level of evidence, and,
therefore, the best quality.
The reviewer then considered the theoretical rigour (strength) of the study (e.g. did the study
have soundly constructed arguments and analysis that followed on from each other and were
supported with evidence from other sources). Strength had a score range of 1 (very low/nostrength) to 4 (very high/very strong).
Finally, the relevance of the study was considered. The relevance rating referred to theapplicability of the study’s results to a palliative approach to residential aged care
(Score range 1 [not applicable/not relevant] to 4 [very applicable/very relevant]).
Studies that scored a relevance rating of 1 or 2 were not included in the Guidelines, even if they
had a high quality and / or strength rating.
Table 4: Qualitative levels of evidence

Questions
1. Aim of the study:
Was the aim clear?
2. Paradigm:
Was the paradigm appropriate for the aim?

Quality of evidence
3. Methodology:
Was the methodology appropriate for the paradigm?
4. Methods:
Were the methods used appropriate for the methodology?
5. Checking methods:
Did checking methods establish rigour?
6. Sample:
Did the sampling strategy address the aim?
7.

Data analysis:
Was the data analysis appropriately rigorous?

22 		 Guidelines for a Palliative Approach in Residential Aged Care

Yes = 1
No = 08.

Findings:
Were the findings clearly stated and relevant to the aim?
Level of evidence score:(Sum scores. Score range from 0 to 8 with 8 being highest level)(Do not add the following strength score to the levels of evidence score).
Strength of evidence(Score range 1 to 4 with 4 being highest level of relevance):
4.

Very high

3.

High

2.

Low

1.

Very lowStrength score:(Do not add the following relevance score to the strengths score OR
the levels of evidence score).
Relevance of evidence(Score range 1 to 4 with 4 being highest level of relevance):
4.

Very applicable3.

Applicable2.

Somewhat applicable1.

Not applicable
Relevance score:

1.1.7

Evaluation Process

Using the search strategies, more than 12,000 references were located and preliminarily assessed
for their potential for inclusion in the evidence evaluation phase by the review working party
members using the inclusion and exclusion criteria. In total, 939 articles were determined as
being potentially suitable for the project and these were formally evaluated.
The review working party was responsible for evaluating the remaining articles’ relevance tothe project. Relevance was scored by judging whether or not the findings from the articles
were transferable to the Australian RACFs’ context. For example, if participants in the study
were aged 65 years and older and institutionalised the results would likely be of relevance tothe project and were scored as 4 out of 4. If a study reported on people with a cancer diagnosis
only, and who were younger than 65 years the results would be judged of lesser relevance, andwere scored 1 or 2 out of 4. The review working party determined that only studies with arelevance score of 3 or 4 would be included. Additionally, only qualitative studies with a quality
rating of 6 or higher (out of 8) and a strength rating of 3 or 4 (out of 4) would be appropriate
for development into guidelines.

Guidelines for a Palliative Approach in Residential Aged Care23

To ensure the reliability of the review working party’s assessments, 20% of the evaluatedarticles were randomly selected and distributed to two palliative care researchers who were notpart of the project for independent rating. A rating discrepancy occurred with two of the 939
articles. In these instances, the articles and the evaluations were forwarded to the four Chief
Investigators of the project for their ratings on the appropriate relevance score, which resulted
in consensus agreement as to the appropriate level of evidence.
Based upon this preliminary evaluation, 446 articles were identified as being relevant to
the project and these were then fully evaluated using the appropriate evaluation tool (either
quantitative or qualitative level of evidence checks as previously discussed) to determine quality
and strength. Of this set, 206 were found to meet the evidence criteria.
From subsequent searches (see section “Search Strategies” as to why further searches wererequired), a further 483 relevant articles were found. Of these, 87 met the evidence standard as
outlined previously; thus creating a total evidence set of 293 articles and studies. This number
does not include those articles that were personal, expert opinion or literature reviews because
the process for incorporating these articles was different; guidelines could not be developed
upon their findings, as outlined below.
A formal consensus process was used to decide upon the inclusion of evidence designated as
Expert Opinion (EO). This process was activated by feedback (particularly from people withspecialised expertise) from stakeholders, reference group members or project working party
members regarding work that they considered was seminal to a particular topic. The article was
located and distributed to all Investigators with consensus being required as to its relevance tothe project for its inclusion in the preamble section of the Guidelines.
Some issues of relevance to aged care settings were not found in the palliative care or
gerontology literature, which necessitated a wider search for relevant empirical work toformulate the Guidelines. Some study findings based on research undertaken in the community
or a palliative care setting have been included when these results were deemed to be transferable
to the aged care setting.

1.1.8

Limitations

There were several limitations to the literature review, which were inherent in the method ofusing electronic databases. The searches were limited to articles published in English; however,much of the research in palliative care and aged care has occurred in European countries and ispublished in other languages, particularly, German, Dutch and Swedish. Additionally, countries
publishing in English language journals are predominantly first world countries and this may
subsequently have limited some exposure to palliative care issues.
Studies not listed on the electronic databases were not captured by either search strategy.
Studies may not have been listed for a number of reasons including a time delay between being
published and appearing on the database, the journal not being picked up by the database or
the database not providing an abstract. Results from an Australian study reported approximately
30% of the palliative care literature was missed on the electronic databases.[16] Also, different
search engines use different key words and different search strategies to identify articles andthese differences may have limited the capturing of appropriate articles.

24 		 Guidelines for a Palliative Approach in Residential Aged Care

The volume of literature created the most significant difficulty for the review working party. There
were major constraints in terms of time and resources to search, locate and evaluate material.
Preliminary assessment made on the basis of title and abstract as a result was often cursory.
Hand searching for specific topics also showed that persistent tracking of material could resultin the identification of additional relevant studies and evidence. However, given the resource
constraints, it was not possible to apply the same approaches to the initial search topics.

1.1.9

Further Research

There were several gaps in the knowledge base regarding a palliative approach to residential
aged care, which are fully discussed in Part 2 of the Final Report (a separate document). Issues
specific to residential aged care that require further research are as follows:• Effectiveness of bereavement approaches and strategies for reducing distress;• Definitions of dying, quality of life for those who are dying and quality of death that are
widely accepted (without these we do not know who should be sampled in research activities,
who should receive palliative approaches in RACFs, and what should be funding bases forcare of residents who require a palliative approach);• Mental health issues including extent and range of problem in aged populations. Potential
issues include schizophrenia, delirium, bipolar disorder, panic disorder, anxiety disorder,
mania and confusion;• Age issues in the application of palliative medicine to RACFs. For example, most studies on
drugs have not been specifically tested on older populations;• Is it appropriate to transfer practices from oncology to aged care populations?
• Quality indicators relating to the discussion on death, advance care planning, and advancecare directives (e.g. dehydration);• Palliative care needs and practices for residents from culturally and linguistically diverse
backgrounds;• Assessing effectiveness and contribution of volunteer, pastoral, and / or allied health care
workers in the palliative process;• The trajectory of chronic illnesses and comorbidities in the aged populations and RACFs; and• Effects of dying in long-term care facilities on staff, other residents and the organisation itself(e.g. multiple losses for staff).

1.2		 GUIDELINE FORMULATION
1.2.1

Aim

The aim of this stage of the project was to formulate the Guidelines for palliative care in agedcare settings reflecting all available evidence for best practice. The Guidelines incorporated thefollowing key principles: a focus on improved outcomes for health care consumers; a basis in
the best available evidence; inclusion of statements about the strength of recommendations; andconsideration of the views of all stakeholders, including consumers.

Guidelines for a Palliative Approach in Residential Aged Care25

1.2.2

Methodology

When the first results of the literature review evaluation process became available, the projectworking party began to formulate the Guidelines. The process for the guideline development
included defining the objective and scope of the Guidelines, formulation of the Guidelines
based on the findings of the available evaluated literature, and refinement of the Guidelines by
relevant stakeholders and the Reference Group.

1.2.3

Objective and Scope of the Guidelines

The objective of the Guidelines was to identify fundamental themes in the provision of apalliative approach in RACFs and to provide evidence-based recommendations to assist agedcare teams to implement such an approach.
The Guidelines would also assist in the identification of local strengths and weaknesses in theprovision of a palliative approach in RACFs, providing a mechanism by which changes inservice delivery could be evaluated over time.
The Guidelines were not rigid prescriptive pathways; rather, their intent was to allow flexibility
in their implementation, to accommodate individual RACF characteristics due to local resource
constraints, such as the current availability of palliative care consultants, and to accommodate
other local circumstances.

1.2.4

Formulation of the Guidelines

Based upon the ratings of the evidence, recommendations for inclusion of studies to develop
the Guidelines were made. The project working party divided into small groups based upon
members’ areas of expertise (e.g. spiritual support, bereavement care). Each small group
determined questions about clinical care that were relevant to their domain, to provide
recommendations regarding best practice. Each group then drafted these recommendations into
guidelines (see Glossary) in accordance with the NHMRC (1999)[9] criteria for evidence-based
guidelines. This process was repeated until all the domains had been considered. The projectworking party then met and discussed each set of guidelines using a process of consensus
to compile a subset of acceptable guidelines. In total, 104 guidelines were developed thatencompassed the 13 domains. These guidelines were presented to key stakeholders via national
focus groups for their feedback.

1.3		 STAKEHOLDER INVOLVEMENT
The principles for guideline development, as outlined by the NHMRC (1999)[9] were usedin preparing these guidelines. One of the key principles is the involvement of stakeholders,
including representatives of all relevant disciplines and consumers.
Therefore, key stakeholders were recruited, and the project working party coordinated theconsultative process in each State and Territory. This involved a broad cross-section of participantsfrom aged care, palliative care, education, volunteering, and consumer advocacy. Close links withother groups currently working in palliative care or aged care were fostered by the Working Party;

26 		 Guidelines for a Palliative Approach in Residential Aged Carefor example, Alzheimer’s Australia, Palliative Care Australia, the Australian Nursing Homes andExtended Care Association (ANHECA), the Australian Nursing Federation, and the AustralianDivision of General Practitioners. Additional contributors are listed in Appendix E.
The NCISN was established at the commencement of the project and comprised stakeholders
and other interested parties. The network:• promoted ongoing dialogues between the project working party and industry /consumer stakeholders,• provided additional opportunities for consultation and feedback, and• provided additional avenues for the dissemination of outcomes of the project.
A newsletter was developed and distributed in early August 2002, to all Australian RACFs,
relevant peak bodies and palliative and aged care educators (e.g. universities, registeredtraining organisations, and independent consultants) to promote the project, and specificallyto encourage stakeholders to participate in the development of the Guidelines. A website forthe project that also promoted the project and called for stakeholders to join the NCISN was
launched mid-August 2002. The scope, process and mechanisms for communication with the
NCISN and other interested parties was outlined on the project’s website in a user-friendly
interface designed to facilitate exchange of information. Additionally, the project’s newsletter
updated and circulated to members of the network at regular intervals to ensure maximum
involvement of stakeholders.

1.3.1

Role of the NCISN

The NCISN was consulted when:(a) The Guidelines were drafted which allowed:• feedback from stakeholders regarding the practicality of the Guidelines; thisopportunity for providing feedback also helped to ensure ownership of the Guidelines
by stakeholders; and• expressions of interest from RACFs that were wanting to assist with assessment of the
Guidelines (such as the useability and feasibility trial).
(b) The latest iteration of the Guidelines was ready for further stakeholder feedback.
(c) The Guidelines were complete, so that stakeholders were informed of the availability of the
Guidelines.
Further details regarding the refinement of the Guidelines are provided in the following section.

1.4		 GUIDELINE DEVELOPMENT AND REFINEMENT
1.4.1

Aim

The aim of this step was to refine the draft Guidelines using a process of national consultation
with key stakeholders such as the NCISN members.

Guidelines for a Palliative Approach in Residential Aged Care27

1.4.2

MethodWhen feedback was required from stakeholders for the project, members of the NCISN were
contacted to elicit their feedback regarding the various iterations of the guidelines with the first
involvement of stakeholders occurring through focus groups. (See Appendix E for a summary of
stakeholder groups who commented on the draft Guidelines and see Appendix F for a summaryof the frequency with which stakeholder groups participated in the guideline refinement process.)

1.4.3

Decision making process for guideline development and refinement

All comments and suggestions from stakeholders and Reference Group members for thedevelopment of further guidelines were considered. The first consideration was does evidence
exist to support the suggestion or comment? If there was evidence, a decision making process
was applied as shown in Figure 1. If there was no evidence, no further action took place.
Feedback Loop #1 — Focus groups
A focus group is a qualitative interview method that aims to describe perceptions, interpretations,and beliefs of a select population to gain an understanding of a specific issue from the perspectiveof the focus group participants.[17] Participants are invited to discuss a specific issue with the helpof a facilitator in a setting that promotes active dialogue between participants.
Focus groups are particularly useful to explore stakeholder’s knowledge, perspective andexperience, especially when these people are from diverse social and cultural backgrounds.[17]The focus group method is also a suitable methodology for looking at sensitive issues orvulnerable populations, because people may feel more relaxed about talking when they seethat other participants have similar experiences or views. Based on the aims of the focus groupmethodology, the project working party decided that it was appropriate to use this method toengage stakeholders in the development of the Guidelines.

28 		 Guidelines for a Palliative Approach in Residential Aged Care

Figure 1: Guideline development decision making process¬ 7ERE¬THE¬ARTICLES¬FINDINGS¬RELEVANT¬AND¬POTENTIALLY¬
TRANSFERABLE ¬TO¬!USTRALIAN¬RESIDENTIAL¬AGED¬CARE

./

9%3

34/0

'O¬TO¬QUESTION¬¬7AS¬THE¬ARTICLES¬LEVEL¬OF¬EVIDENCE¬)¬OR¬))

./

9%3

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7ORKING¬0ARTY¬TO¬DEVELOP¬A¬GUIDELINE

./

9%3

34/0

'O¬TO¬QUESTION¬¬7AS¬THE¬STRENGTH¬OF¬THE¬EVIDENCE¬A¬¬OR¬

./

9%3

34/0

'O¬TO¬QUESTION¬¬ 7AS¬THERE¬CONSENSUS¬FROM¬THE¬7ORKING¬0ARTY¬TO¬DEVELOP¬A¬GUIDELINE

./

34/0

'O¬TO¬QUESTION¬¬ 7ERE¬THERE¬RESOURCE¬IMPLICATIONS¬!¬CURSORY¬COMPARISON¬
OF¬COSTS¬AND¬BENEFITS¬OF¬THE¬SUGGESTED¬GUIDELINE¬IS¬ALL¬
THAT¬IS¬REQUIRED¬OF¬THIS¬STEP

./)F¬COSTS¬OUTWEIGH¬BENEFITS¬
34/0)F¬RISK¬OUTWEIGHS¬BENEFITS
34/0

9%3
)F¬BENEFITS¬OUTWEIGH¬RISKSGO¬TO¬QUESTION¬¬ 7OULD¬AGED¬CARE¬TEAM¬MEMBERS¬BE¬ABLE¬TO¬IMPLEMENT¬THE¬GUIDELINE ¬PROVIDING¬THEY¬HAD¬ACCESS¬TO¬APPROPRIATE¬EDUCATION

./

34/0

9%3

)F¬BENEFITS¬OUTWEIGH¬COSTS ¬GO¬TO¬QUESTION¬¬ $O¬POTENTIAL¬BENEFITS¬OUTWEIGH¬POTENTIAL¬RISKS¬!¬THOROUGH¬COMPARISON¬IS¬REQUIRED¬FOR¬THIS¬STEP

./

9%3

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$EVELOP¬A¬GUIDELINE

Guidelines for a Palliative Approach in Residential Aged Care29

Several Working Party members convened focus groups with NCISN members in each state
and territory to ensure that consultation regarding the draft Guidelines was nation-wide,
representative and generalisible. Participants (N = 176) represented a broad cross sectionof aged care and palliative care health professionals including, general practitioners (GPs),
palliative care medical specialists, aged care and palliative care nurses, and allied healthprofessionals. Academics with relevant expertise in the area, representatives of various peakbodies, coordinators of volunteers, and consumers were also included in the focus groups.
The Guidelines were sent out to participants one week prior to the focus group to provide themwith sufficient time to consider their response. The 104 Guidelines were formatted to allow
focus group participants to respond to each guideline in one of three ways; 1) supported, 2)
supported with revisions or 3) not supported. The Guidelines were presented in this format at
all of the focus groups. (See Appendix G for an example of how the Guidelines were presented.)
Each participant received a hard copy of the Guidelines well in advance of the meeting, with
the invitation to provide written comments to be discussed at the focus group meeting.
Because of the number of guidelines to be reviewed it was decided by the project working party to
divide the task and involve two focus groups in every state and territory. (Assessment, co-morbidities
and physical symptoms were discussed in both groups because participants felt that this area wascrucial to ensuring a palliative approach was appropriate to the context of RACFs.)
The first focus groups discussed:• assessment, co-morbidities and physical symptoms,• advance care planning,• family support,• bereavement,• spirituality, and• volunteers.
The second focus group discussed:• assessment, co-morbidities and physical symptoms,• documentation of social relationships,• attitudes to palliative care,• psychosocial care, and• culture.
A brief overview of the development of the Guidelines, the literature review and the grading ofevidence was provided by the facilitator to participants to begin the focus group. The way inwhich rural, remote, cultural and Indigenous issues were being covered on a national level was
also highlighted.
Each focus group then worked through their requisite guideline subjects with every guideline
presented on overhead to facilitate discussion. As well as having the ‘background questions’ inmind, the groups were asked to consider (a) any gaps in the Guidelines, (b) any recommendations
arising out of the Guidelines and (c) additional suggestions for evidence/literature.

30 		 Guidelines for a Palliative Approach in Residential Aged Care

Rural and Remote
Rural and remote stakeholders came from their membership of the NCISN and from existing
networks that the Specialist Consultant for Rural and Remote had developed. The Rural andRemote stakeholders’ focus groups were conducted differently to the other focus groups due tothe constraints of geographical distance. For these groups four teleconference meetings and one
face-to-face meeting were conducted. Participants represented all states and territories (with the
exception of the ACT, because the ACT does not have areas that are rural or remote).

Focus Groups’ Feedback
The consensus from the participants at the focus groups was that they were enthusiastic about
the Guidelines development and indicated that they were long over due. They were aware that
there was great need to provide aged care teams in RACFs with better information about apalliative approach and were very enthusiastic about the project.
Stakeholders recommended that additional issues should also be included in the Guidelines,
such as the families ongoing needs for bereavement support for after the death of the resident
and the effects of a lack of continuity of staff involved with resident care.

Feedback Loop #2 — Working Party and Reference Group Members
Subsequent to receiving all of the focus groups’ feedback, the Guidelines were discussed andrevised by the project working party. Additional searches of the databases (mentioned in the
search strategies) for relevant information on issues that were raised by stakeholders, such asstaff’s bereavement care, were completed by the review working party to provide evaluatedevidence for the project working party to develop further guidelines. The Guidelines (Revised
Version #1) were forwarded to the Departmental Reference Group early in December 2002.
Following the feedback from the Reference Group, the Working Party revised the Guidelines inaccordance with the suggestions and the evidence base to support the suggested change.

Feedback Loop #3 — Stakeholders
The Guidelines were placed on the project’s website and an email was forwarded to all membersof the NCISN and the Reference Group to notify them that the Guidelines (Revised Version#2) were available for them to download and provide feedback to the Working Party.
Feedback was received from 55 stakeholders. Approximately one-third of organisations distributed
the Guidelines to key personnel and provided them with a proforma on which to respond. These
responses were collated by the organisation and then forwarded to the Working Party.

NCISN Feedback
Feedback that was received was supportive of the revisions that had taken place. Additional
issues that were considered relevant for inclusion were complementary therapies, clearer
distinction between depression, delirium and dementia, and more work on advanced dementia
and the physical symptoms (of advanced dementia).
All the feedback received was collated onto a spreadsheet, which was forwarded to the Working
Party so they could consider the feedback and provide comment as to whether they agreed

Guidelines for a Palliative Approach in Residential Aged Care31

or disagreed with each stakeholder’s feedback. The Working Party’s recommendations werediscussed with the Reference Group and then the Guidelines were again revised in accordancewith the suggested changes and the evaluated evidence provided by the review working party.

Feedback Loop #4 — Useability and Feasibility Assessment
The aim of the useability trial was to determine how clear, useable and feasible a sample set of
the Guidelines was for aged care teams. The project working party selected three sites for theuseability trial, a high care facility, a low care facility and one rural and remote facility. These
three sites were chosen because together they represent all the types of facets of RACFs thatexist within Australian residential aged care. The participants were aged care team members
currently employed in the RACF.
Participants (N = 36) were given a booklet one week prior to the running of a focus group in
their facility. Each booklet contained three guideline topics. Participants were asked to consider
10 questions (see Appendix H) for each guideline. The questions were designed to elicit theparticipants’ thoughts regarding the useability, feasibility and clarity of the sample set ofGuidelines (Revised Version #3).
Feedback
There was considerable support for the Guidelines’ useability, feasibility and clarity from theparticipants in all the trials. Although a glossary had been included in the Guidelines, there
was concern about the terminology being difficult to understand and many felt most concerns
could be addressed by appropriate training. It also became apparent that the term ‘palliativecare’ was taken by many in aged care to mean the last 48 hours of life, which differed from theWorking Party’s concept of a palliative approach.
The rural and remote facility’s participants raised additional concerns pertaining to theirgeographic isolation. For example, access to specialists was problematic; however, they suggested
that the solution could be to use videoconferencing.
All the feedback received was collated and reported to the Working Party and Reference Group.
It was decided to broaden the Glossary of the Guidelines to ensure that terminology could beunderstood and to add a new chapter regarding end-of-life to assist in drawing a distinction
between a palliative approach and end-of-life care. Training implications were to be provided
to the education consultant who would be working on the second objective of the project, anational education and training framework.

Feedback Loop #5 — Project Working Party and Reference GroupThe Guidelines (Revised Version #4) were forwarded to the project working party to review.
All chapters of the Guidelines were scrutinised; particularly the new end-of-life chapter (due tothe lack of suitable evidence with much of the information drawing upon expert opinion) andmany changes were made. One significant change was the reordering of the chapters so thatthey had a more considered progression. For example, because many residents have advanced
dementia and require an advance care plan, these two chapters were moved forward. Fromcollaboration with stakeholders, we found that many in aged care considered that palliative
care referred to the last 48 hours of life. This led to ‘a palliative approach’ being the appropriate

32 		 Guidelines for a Palliative Approach in Residential Aged Careterminology for the Guidelines. Additionally, we wished to de-emphasise the notion thatpalliative care was about the last days of life by moving the chapter on end-of-life care to be
one of the last chapters in the Guidelines. This was considered a more appropriate position andbereavement support naturally followed end-of-life care.

Feedback Loop #6 — Reference GroupThe Guidelines (Revised Version #5) were forwarded to the Reference Group for their review.
The Reference Group supported the latest changes and recommended some additional
strengthening of some chapters. For example, the advance care plan chapter needed to include
the differing state and territory legislation, and the dignity and quality of life chapter required a
discussion on privacy. These changes were completed by the Working Party.

Feedback Loop #7 — Call for public feedback
Part of the NHMRC approval process was the requirement for a call for public comments via
advertising in a national newspaper. In compliance with this requirement, an advertisement
was placed in The Australian newspaper in November 2003, calling for submissions to bereceived by mid-December 2003. Twelve submissions were received by the closing date.
These comments were logged on a database and the responses from the Working Party werealso included to provide an audit trail to document how these submissions were handled.
Submissions were received from various RACFs, ANHECA, Geriaction, Alzheimer’s Australia,
Nurse Educators and state health organisations. These comments again resulted in somechanges to the Guidelines and the latest version (#6) was forwarded to the Reference Group for
their review.

Feedback Loop #8 — Reference GroupThe Reference Group supported the latest changes and recommended that this latest version(#7) be posted on the Project’s website due to requests from the public to review the Guidelines.

Feedback Loop #9 — Stakeholders
The Guidelines were placed on the project’s website and an email was forwarded to all membersof the NCISN and the Reference Group to notify them that the Guidelines (Revised Version#7) were available for them to download and provide feedback to the Working Party.
Feedback was received from 58 stakeholders. Some organisations distributed the Guidelines to
key personnel and provided them with a proforma on which to respond. These responses werecollated by the organisation and then forwarded to the Working Party. It is worth noting thatthese organisations appear as only one respondent when in fact the actual number of people
who have provided feedback is considerably higher than 58.
Stakeholder Feedback
Feedback that was received was supportive of the revisions that had taken place. Additional
issues that were considered relevant for inclusion were complementary therapies, clearer
distinction between depression, delirium and dementia, and more work on advanced dementia
and the physical symptoms (of advanced dementia).

Guidelines for a Palliative Approach in Residential Aged Care

33

All the feedback received was collated onto a spreadsheet, which was forwarded to the Working
Party so they could consider the feedback and provide comment as to whether they agreed
or disagreed with each stakeholder’s feedback. The Working Party’s recommendations werediscussed with the Reference Group and then the Guidelines were again revised in accordancewith the suggested changes and the evaluated evidence provided by the review working party.
These comments resulted in minimal changes to the Guidelines and the latest version (#8) was
forwarded to the Reference Group for their review.

Feedback Loop #10 — Reference Group
Based on the Reference Group’s feedback the Guidelines were refined and the penultimate
version (#9) of the Guidelines was forwarded to the Reference Group for their final comments.
The Guidelines were revised again where appropriate and the final version (#10) was forwarded
to the Department so that the Guidelines could be technically edited prior to their launch. This
last step completed component I.
The above decision-making process was also applied to comments and suggestions fromstakeholders and Reference Group members to ensure that their input was given the sameattention as that of the Working Party.

1.5		 GUIDELINE IMPLEMENTATION AND EVALUATION
1.5.1

Implementation and Dissemination of the Guidelines

With overwhelming support and encouragement from stakeholders, the APRAC project teamprovided the Department of Health and Ageing with the Guidelines, a training framework andan implementation plan.

Implementation
The Department is now working with PCA, the Community Services and Health Industry
Skills Council and the Queensland University of Technology to further the implementation of
the Guidelines.
PCA, in partnership with the Department, has developed a plan for national workshops forresidential aged care facilities’ (RACF) staff regarding implementation of the Guidelines.
Training modules have been developed by PCA that build upon the recommendations by the
APRAC project team. These modules will be presented via workshops and support will be
provided to RACF educators involved in providing in-house training for staff to facilitate apalliative approach for residents.
The Community Services and Health Industry Skills Council (CSHISC) have worked withthe aged care sector and have determined that a palliative approach in residential aged careshould be incorporated in the Training Package for Aged Care Team Members (Certificate III in
Community Services [Aged Care]).
Queensland University of Technology have developed a Principles Paper for a Palliative
Approach for Aged Care to be incorporated in the Undergraduate Nursing Curricula (available
at http://www.hlth.qut.edu.au/nrs/publications).

34 		 Guidelines for a Palliative Approach in Residential Aged Care

The implementation plan included the following strategies:

Dissemination
First Version:
An initial print run of 4,000 copies of the guidelines were disseminated to all RACFs andrelevant stakeholders free of charge by the DoHA. Due to demand, a second print run took
place. To assist electronic dissemination of the Guidelines, the DoHA placed a link on theirwebsite at www.health.gov.au/palliativecare so that copies could be downloaded free of charge.
Second Version:
This second edition of the Guidelines was required as part of the process for gaining approvalby the NHMRC. This second edition is available for downloading free of charge, from the
NHMRC website at www.nhmrc.gov.au or from the Department of Health and Ageing website
at www.health.gov.au/palliativecare.

ApprovalThis second edition of the Guidelines has been approved by the NHMRC.

1.5.2

Evaluation and Updating of the Guidelines

An essential part of the guideline development and implementation process is an evaluationof their effectiveness. An evaluation strategy will be undertaken by PCA as part of theimplementation stage and will likely include the collection of data to determine the impact of
the guidelines on aged care team members’ behaviour and residents and families’ outcomes.
The guidelines reflect the best available knowledge at the time of their publication and are
current to September 2005. However, as new evidence emerges, the Guidelines will require
regular revision in order to maintain their validity; five years is suggested as an appropriate
time frame before such revision should occur. Therefore, the expiry date for this version of the
Guidelines is September 2010.

Further Research
Areas that the Project Working Team believes require significant further research were discussed
previously (See 1.1.9 Further Research).

Guidelines for a Palliative Approach in Residential Aged Care

35

CHAPTER 2

A PALLIATIVE APPROACH

A society’s philosophical beliefs and attitudes about death and dying, and a palliative approach,will affect the provision of guidelines for this type of care. This chapter examines some of the
key beliefs and attitudes that may influence a palliative approach.
In most western societies, any discussion of death and dying creates discomfort.[18] Thisdistancing response to death and dying is reflected in poor communication about the topic,
limited resources directed to this specialty area, and minimal education about how to provide
supportive end-of-life care. These barriers may make it more difficult for members of the agedcare team to provide care for residents who are dying. Therefore, RACFs who try to adopt a
palliative approach to care for residents may feel challenged to overcome some of the ‘death
denying’ attitudes pervasive in the wider culture.
At the same time, people entering RACFs are increasingly frail. Authors of a recent Australianstudy projected a 70% increase over the next 30 years in the number of older persons withprofound disabilities, particularly for those aged 65 years or older[5] (Level QE). The main
conditions for older persons with profound disability are neurological, musculoskeletal,
circulatory and respiratory conditions. Stroke also severely debilitates. Mild to moderate
disabilities are associated with poor vision and hearing, psychiatric disorders and cancer.
Residents are likely to have more than one of these disabilities and their management istherefore likely to be complex. These disabilities significantly restrict daily activities such asself care, mobility and communication. A major increase in the number of people aged 75 to
94 with a profound restriction is also projected to occur from 2011 to 2021. This increase is
expected to have major implications for care delivery.

2.1 THREE FORMS OF PALLIATIVE CARE
In considering palliative care for residents in RACFs, it is important to distinguish between apalliative approach, specialised palliative care service provision and end-of-life (terminal) care.
The distinction among these forms of palliative care is important in care planning and clarifying
the goals for treatment for residents.

(i)

A palliative approach

When the resident’s condition is not amenable to cure and the symptoms of the disease require
effective symptom management, a palliative approach is appropriate. Providing active treatment
for the resident’s disease may also still be important and may be provided concurrently with apalliative approach. However, the primary goal of a palliative approach is to improve the resident’s
level of comfort and function, and to address their psychological, spiritual and social needs.

Guidelines for a Palliative Approach in Residential Aged Care

37

(ii)

Specialised palliative service provisionThis form of palliative care involves referral to a specialised palliative team or health carepractitioner. However, this does not replace a palliative approach but rather augments it withfocused, intermittent, specific input as required. The goals are:• assessing and treating complex symptoms experienced by the resident; and• providing information and advice on complex issues (e.g. ethical dilemmas, family issues, or
psychological or existential distress) to the aged care team.

(iii)

End-of-life (terminal) careThis form of palliative care is appropriate when the resident is in the final days or weeks of lifeand care decisions may need to be reviewed more frequently. Goals are more sharply focused on
the resident’s physical, emotional and spiritual comfort, and support for the family.
Identifying when a resident is moving into a terminal phase will assist the aged care teamto provide appropriate care and communication. However, this decision is not easily made,because there are few clear indicators to identify when a person should be considered to be in
the terminal phase of an illness or ageing process. This is particularly difficult when the resident
has a number of co-morbidities (for further discussion see Section 2.2.1, ‘Prognostication’).
The aged care team needs to acknowledge the important role of the family carers, to respect
the choices that the resident and their family make about treatment options, and endeavour
to anticipate the needs of those involved[19] (Level QE). Careful attention to the following
characteristics will assist the aged care team in taking a palliative approach to resident care:• being available to discuss issues with the individual and family members;• providing information in a proactive way; and• having a sense of partnership with people and their families[20] (Level QE).
McGrath (2001) reported that families especially valued receiving information from the agedcare team when death was imminent, so they could prepare for the resident’s death[19] (Level
QE). Reynolds and colleagues (2002)[21] (Level QE) described the needs of residents dying in
RACFs following interviews with staff and family after the death of a resident. They found thatthe most common physical problems were pain, personal cleanliness, dyspnoea, incontinence
and fatigue. Respondents felt that there could have been more treatment for emotional
symptoms such as depression, anxiety and loneliness.
The following indicators are provided to help the aged care team determine when to discuss
end-of-life matters with the resident and family. These indicators are not prescriptive, norshould they be used in place of careful, individualised assessment of each resident.
Symptoms that are considered to indicate a terminal phase of life include[22] (Level IV):
• Requiring frequent intervention• Being bed-bound• Loss of appetite

38 		 Guidelines for a Palliative Approach in Residential Aged Care• Profound weakness• Trouble swallowing• Dry mouth• Weight loss
• Becoming semi-conscious, with lapses into unconsciousness• Experiencing day-to-day deterioration that is not reversible
These indicators are important to note and the aged care team should be alert to helping theresident and their family to prepare for the terminal phase of the resident’s life.

2.2 WHEN SHOULD A PALLIATIVE APPROACH BE
IMPLEMENTED?
Unlike people who are dying of cancer, residents in RACFs generally have a gradual decline
in functional ability, so there is usually no sharp delineation between curative care and theacceptance that the goal of care is palliation.[23–26] For older persons, the dying trajectory isoften characterised by a lack of certainty common to chronic conditions, especially in theabsence of a significant event to mark the end stage of illness.[25] However, the decision to
implement a palliative approach should not be based on the individual’s clinical stage ordiagnosis; rather, it should be offered according to the needs of the individual.[27] (Level EO)
The aged care team needs to understand that the transition from curative care to a palliative
approach is important for residents. More attention should be paid to these transitions and thedecisions that residents, their families and care teams are called upon to make.[23,24] (Level QE;
Level QE) Such timely recognition provides an opportunity for tailored support for residents andtheir families.[28] Some residents (and/or family) may accept a palliative approach much earlier ina disease trajectory or the ageing process. Alternatively, a resident may not be able or willing todecide upon one course of action over another and this could hinder a decision about which is themost appropriate. A discussion with the resident’s family would be beneficial in such situations.
Although the discussion of a palliative approach may be difficult or unfamiliar to somemembers of the aged care team, it is important that the decision to consider a palliative
approach should be made in collaboration with the resident, the family and the team. Lack ofclarity among the aged care team or lack of openness with residents and families may lead toconflict and confusion about care goals.[29,30] (Level IV; Level QE) (The process of discussing
care plans is elaborated upon in Chapter 4, ‘Advance care planning’.)
Families are frequently concerned about pain control.[31] As well, families need information
about the prognosis, trajectory of the condition and care decisions that need to be made[31](Level QE). Families and residents should be left in no doubt that symptoms such as pain andnausea can usually be controlled, provided there is continuous access to care. A combination ofactive treatment to manage difficult symptoms while continuing to follow a palliative approachis considered best practice[32] (Level IV). Therefore, open and regular discussions with theresident and family need to be conducted so the aged care team can understand the resident’s
wishes[32] and to facilitate continuity of care.

Guidelines for a Palliative Approach in Residential Aged Care

39

The NHMRC (1998) recommends that people should be encouraged to make their own
decisions concerning medical interventions or approaches to care.[33] This recommendation
should also apply to residents in RACFs. To facilitate participation in decision making, theresident (and/or their family) should be given adequate information in a way that promotes
understanding. Family members report greater satisfaction with the care their relative receives iffamily members perceive that either they or their relative had control of care decisions, such aswhere they would die and who would care for them [34] (Level QE). Dying with dignity involves
the right of the dying resident to choose where they wish to be cared for, where they wish to die
and whom they wish to care for them [35] (Level QE).
The provision of information about a palliative approach may also assist residents and theirfamilies to consider a palliative approach as active care rather than the withdrawal of treatment[24] (Level QE). However, the reverse is also true when residents are transferred from acute caresettings to the RACF. Families may become unhappy if they believe that the transfer will resultin their family member receiving a sub-standard palliative approach compared with the carepossible in an acute care setting[36] (Level QE). Prior to such a transfer, there generally is a needto explain to the family that good care with a palliative approach is available in RACFs.
In one of its publications, Palliative Care Australia (2002)[37] recommends four straightforward
steps to providing continuity of care. The following recommendations have been adapted fromthis document:
1.

Should referral to a specialist palliative service be appropriate, then this should be timely
and preferably not in response to a crisis.

2.

Should acute care be appropriate, then the resident’s admission to acute care should bequick and straightforward.

3.

The resident and families should have access to the same aged care team, wherever
possible, to promote continuity of care and coordinated care delivery.

4.

The resident’s team leader or suitable delegate should centrally coordinate care provided byexternal services to the RACF.

2.2.1

Prognostication

Prognosis and survival time are profoundly linked, yet the methods used to identify survival
time have limitations in accuracy and precision[38] (Level IV). Therefore, caution is warranted
regarding the use of these methods.
An alternative method involves using a set of ‘trip wire’ questions that can help determine when
to introduce a palliative approach with residents of RACFs. This could be in the form of an
ongoing review or dialogue among the aged care team, family members and the resident. The
questions might include:• Does the resident and/or the family choose treatment goals directed towards the relief ofsymptoms, rather than curing the underlying disease?
• Has there been a new diagnosis? Significant diagnoses might include cancer, dementia,
multiple sclerosis, motor neurone disease, stroke or heart failure.

40 		 Guidelines for a Palliative Approach in Residential Aged Care• Has the resident had a recent decline in functional status (e.g. bathing, dressing, mobility,
verbal communication, energy level, and mood)?
At some point the severity and number of symptoms may increase, with the resident’s
condition rapidly deteriorating. These situations may not allow for slower-paced discussions
with the resident and their family. Nevertheless, the principles of symptom management
should be followed to ensure that the resident is able to receive optimum comfort and relief ofsymptom distress (see Chapter 6, ‘Physical symptom assessment and management’). Regularcommunication with the resident’s other care providers becomes particularly important, anddocumentation of who is involved in providing care needs to be current.
Members of the aged care team also need sound interpersonal skills and good listening abilities
to help the resident talk through issues such as their wishes and hopes for the future in thecontext of their advancing illness. The transition through the decision-making process may
also be stressful and the resident and family should ideally be involved in this process. Conflict
between the resident and family members may surface or may even be exacerbated during thesetimes. The aged care team needs to help the resident’s family accept the decision of the resident
whenever appropriate, because in most instances the decision to accept a palliative approachshould be the resident’s[39] (Level QE). However, the views of the family are also relevant andneed to be understood[40] (Level EO).
Guideline:

When should a palliative approach be implemented?
Ref No.

Evidence level1.

Methods used to identify survival time, such as physicians’ clinicalpredictions, have limitations in accuracy and precision resulting
in overestimating survival. Therefore, relying only on thesemethods to determine when to start a palliative approach is notrecommended. Aged care team members need to be aware ofthis tendency to overestimate survival, to reduce residents’ andfamilies’ potential distress.

38

IV

2.

Attention to residents’ transition from active curative care to
palliative care (with comfort care and symptom management)
requires that aged care team members provide the resident andtheir families with sufficient information about the transition
process to facilitate decision making. This provision of information
can reduce residents’ and families’ concerns and increase theirsatisfaction regarding the appropriateness of a palliative approach.

24, 35QE

2.3 WHERE CAN A PALLIATIVE APPROACH BE
PROVIDED?
A palliative approach can be used in any setting,[41] and should ideally be provided wherever
people who require this approach reside. Therefore, RACFs may be an appropriate caresetting because residents in RACFs face many of the same issues as others with a life-limiting
condition[42] (Level QE).

Guidelines for a Palliative Approach in Residential Aged Care

41

The implementation of a palliative approach in RACFs can reduce the potential distress toresidents and their family caused by a transfer to an acute care setting[42] (Level QE);[41](Level
QE). A study of a palliative approach in South Australian high-care facilities found that 47%(N=71) of the 151 facilities participating indicated they had provided and/or were providing
a palliative approach to approximately 10% of their residents[41] (Level QE). These findings
suggest that many Australian RACFs are already providing a palliative approach to theirresidents rather than transferring these residents to other facilities.
Access to a palliative approach in rural settings may, however, be more difficult. Poor accessto a palliative care service was cited by the authors of a South Australian study as the probablereason for the finding that rural terminally ill cancer patients were less likely to receive a
palliative approach (59% compared to 71%) [43] (Level IV). In rural and remote areas it may be
unfeasible to support a full-time specialised service; however, support from such a service can beaccessed over distance by GPs, or other medical and health practitioners via phone or Telehealthconsultation.
The type of RACF, and especially the range of medications that can be provided, tempers thecapacity for assessment and the provision of a palliative approach. If the RACF is a low-carefacility then the aged care team (including GPs) needs to be aware of the restrictions that occur
when providing S8 medications to control symptoms. (These vary to some degree throughout
Australia and therefore no generic statement can be made regarding this point.)

2.3.1

Transfers/discharges of residents requiring a palliative approach

Without the support of appropriate protocols and procedures, especially at night, the aged careteam is likely to choose referral to acute settings rather than attempting a palliative approachin an RACF[41] (Level QE). A study of the provision of a palliative approach in RACFs foundthat a third had transferred or discharged a resident requiring a palliative approach to anotherfacility or the community (76% to an acute hospital, 14% to a hospice, and 8% home, to their
homeland or to a different city)[6] (Level QE).
The main reason for these transfers or discharges was that the resident needed expert or acutecare or extra resources (57%).[6] The lack of resources was attributed to such factors as a lackof time, low staff-resident ratios, insufficient nursing and personal care hours, and a lack of
education and training for all the aged care team (including GPs and volunteers). However,where adequate skilled care is available in the resident’s familiar surroundings, the aged careteam and GPs need not transfer or discharge residents to other settings[44] (Level III-3).
Therefore, adequate support and education for the aged care team is considered essential toreducing the inappropriate transfer or discharge of residents requiring a palliative approach in
the RACF.[6,25,41]
Dying with dignity involves the right of the dying resident to choose where they wish to becared for, where they wish to die and whom they wish to care for them[45] (Level IV)
A palliative approach in RACFs provides opportunities for intervention, especially improved
control of pain symptoms and terminal care of residents with greater functional disability, in asetting that is familiar to them and their family[46] (Level EO). The evidence also suggests thatmany directors of nursing actively encourage residents requiring a palliative approach to remain

42 		 Guidelines for a Palliative Approach in Residential Aged Carein the RACF rather than transferring them to an acute setting.[6,47] These decisions are usuallybased on the resident’s familiarity with the aged care team and the facility, adequate care alreadybeing provided in the RACF, a request from the resident, their family or the GP, or a lack of
hospice beds.[6,47]
A palliative approach can usually be provided in an RACF.[6] This offers benefits to the resident
and family through consistency and continuity of care. In some instances there may be a needfor intermittent specialised palliative support when residents have complex symptoms or theaged care team requires additional support. However, this consultation can often occur while
the resident remains in the RACF.
Guideline:
3.

Where can a palliative approach be provided?

A palliative approach can be provided in the resident’s familiar
surrounding if adequately skilled care is available, which reduces
the need for transfer to an acute care setting; thereby, avoiding
potential distress to the resident and his/her family.

Ref No.

Evidence level

6, 23

QE

2.4 WHO CAN PROVIDE A PALLIATIVE APPROACH?
A palliative approach is best provided by an effective multidisciplinary team[48,49] (Level QE)[50] (Level III-2). An effective team recognises and acknowledges that team members are likely
to have different perspectives about a palliative approach, yet team members are able to clarify
and address the reasons for these differences. When a multidisciplinary team uses this approach,their job satisfaction improves as does the quality of care that is provided to residents and theirfamilies[48]. A team approach to care planning also facilitates the aged care team in providing
residents with highly individualised care, which allows for the discussion of advance care plansthat address prognosis, emotional preparation , and appropriate use of medical treatments(including the potential benefits and disadvantages of treatment decisions)[49] (Level QE).

2.4.1 What is a ‘multidisciplinary team’?
A multidisciplinary team is a group consisting of three or more people from different disciplines
who collaborate in making decisions about all aspects of diagnosis, treatment and care ofresidents and their families[48,49] (Level QE). Effective multidisciplinary teams can provide
support and symptom control to improve the quality of both living and dying for residents
and their families through a palliative approach. This multidisciplinary approach is critical to
the success of a palliative approach because the wide variety of forms of distress experienced byresidents and their families requires a broad range of skills[49] (Level QE).
The multidisciplinary team focuses its efforts on addressing the problems that are of mostconcern to the resident[49] (Level QE). Barriers to appropriate treatment, such as confusion overpain medications, whether a facility has access to requisite medications, and uncertainty about
the benefits of treatment, can also be addressed.

Guidelines for a Palliative Approach in Residential Aged Care43

2.4.2

Who are potential members of a multidisciplinary team?

Potential members of a multidisciplinary palliative team[51] (Level EO) might include, but are
not limited to:• Care assistants;• General practitioners (GPs);• Generalist nurses (i.e. Registered Nurses (RN), Enrolled Nurses (EN));• Specialist nurses (e.g. continence, wound care, palliative care, nurse practitioners);• Aboriginal health workers;• Volunteers and coordinators of volunteers;• Pharmacists;• Chaplains/pastoral care workers;• Recreational activities officers (these aged care team members are commonly used in RACFs
and have considerable direct contact with residents);• Pain specialists;• Allied health practitioners (e.g. occupational therapists, physiotherapists, speech pathologists,• social workers, diversional therapists, dieticians, music therapists and podiatrists);• Specialist physicians (e.g. surgeons, neurologists, geriatricians, oncologists, wound carespecialists and radiotherapists);• Community palliative services; and• Psychologists/psychiatrists.
The resident and their family, as well as being recipients of care, if willing, are also essential
members of the palliative team.

2.4.3

How should a multidisciplinary team function?

One member of the team usually assumes the role of coordinator (e.g. the Director of
Nursing, or other suitably qualified nurse, or the GP)[52] (Level QE). Depending on theirroles, different members of the team have varying perceptions of a palliative approach,necessitating cooperation and good communication among members[48] (Level QE). Effective
communication and teamwork are considered by nurses and GPs working in RACFs to be
essential aspects of a palliative approach[31] (Level QE).
Effective multidisciplinary teams are able to articulate common goals and work in acollaborative, non-hierarchical environment.[53] They meet regularly to assess and discuss
progress and are able to devise protocols for providing a palliative approach.[49,54]

2.4.4

Staffing skill mix

There is no sound evidence on the minimum number of representatives from each discipline(nursing, social work, pastoral care, etc) needed to develop a palliative approach. RACF
managers should determine the skill mix and allocated hours of the aged care team, taking into
consideration the level of dependency of residents, the complexity of needs, and the availabilityof external palliative care services. Given that a palliative approach, rather than specialised

44 		 Guidelines for a Palliative Approach in Residential Aged Care

palliative care teams is more appropriate for RACFs, alternate models and approaches about
how to create a palliative approach or access palliative care expertise for different RACFs islikely to be the best approach.
One approach is the creation of a palliative nurse practitioner role in RACFs[55] (Level QE).
A palliative nurse practitioner is a suitably qualified RN experienced at an advanced level
who provides a leadership role and coordinates clinical consultation and care to residents of
RACFs, their families and members of the palliative team.[55] In one study, a ‘link nurse’ wasalso established to facilitate continuity of care in the RACF. A link nurse was defined as a nurse
who is interested in, has received training in, and pursues continuous education in a palliative
approach.[55] This nurse is not expected to be an expert in a palliative approach, but understands
the philosophies and practices of palliative care, and will promote and facilitate the care ofresidents in the RACF to ensure an appropriate palliative approach is provided. In the study
referred to, an evaluation of the service at six months indicated that 17 residents that previously
would have been transferred to an acute care facility were able to die at the RACF.[55]Despite variations in RACFs, Maddocks and colleagues (1999)[55] recommend that, at theminimum, one member of the aged care team (preferably an RN) should have some formal
qualification in a palliative approach. This level of training and expertise would also assist
the aged care team ensure staff receive adequate direction and supervision and that accurate
symptom assessment, using validated assessment tools, occurs (see also Section 6.1, ‘Symptom
assessment’). Ideally, all aged care teams in RACFs should have sufficient training to apply thesensitive interpersonal communication required for a palliative approach that improves the levelof satisfaction of residents and their families[44] (Level III-2).
Guideline:4.

Who can provide a palliative approach?

A palliative approach is best provided by an effective
multidisciplinary team.

Ref No.

Evidence level

50

III-2

Guidelines for a Palliative Approach in Residential Aged Care

45

CHAPTER 3

DIGNITY AND QUALITY OF LIFE

Promoting a person’s sense of dignity is central to a palliative approach,[56] and dignity andquality of life are inextricably linked in this approach. Several researchers have explored what
people’s views on quality of life mean to them as their death approaches. Themes that have been
identified include having adequate pain and symptom management, avoiding inappropriate
prolongation of dying, relieving burdens, achieving a sense of control, and strengthening
relationships with loved ones[14] (Level QE).

3.1 DIGNITY
Researchers also highlight the difficulty in describing and evaluating the concept of ‘dying
with dignity’. In one study, the authors note three important factors of dignity: the capacity
to communicate, the ability to recognise friends and family members, and being continent[57](Level IV).
People may hold different views about what dignity means, and in the face of a progressive
illness or the ageing process the meaning of dignity may change over time. It is also important
to note that the aged care team’s perception of dignity may differ from the resident’s view. The
best way to understand what dignity means for an individual resident is to ask each resident
and their family what are the most important factors for him or her in regard to dying with
dignity. The aged care team members who endeavour to respect the dignity of residents needto acknowledge the things that are considered important to the individual in enhancing andmaintaining their dignity.
Chochinov and colleagues (2002)[58] (Level III-3) have undertaken the most thoroughempirical work in relation to understanding the concept of dignity in the context of apalliative approach. This research team identified a Dignity-Conserving Care Model for apalliative approach that is aimed at helping the individual to feel valued. The framework
can be used to discuss end-of-life care when residents are able to make informed decisions
and develop a sense of closure. Chochinov (2002)[59] (Level EO) argues that the notion of
dignity may be influenced by the nature of the illness, as well as by culture and ethnicity. The
framework his team has described is sufficiently broad to encompass these issues. Chochinov
and colleagues (2002)[58] (Level III-3) also argue that the resident, family members and theaged care team may define dignity differently; they advise the aged care team to be alert towhose perspective of dignity is being considered.
A review of the evidence suggests that in a practical setting the categories of dignity include
illness/ageing-related issues, dignity-conserving strategies and a social dignity inventory[58](Level III-3). Illness/ageing related concerns are those things that directly result from the illness

Guidelines for a Palliative Approach in Residential Aged Care47

or ageing progression (see Table 4). Dignity-conserving strategies are those influences related
to the resident’s psychological and spiritual resources (see Table 5). Finally, the social dignity
inventory includes those environmental influences that can affect dignity, such as privacy
boundaries, social support, and concerns of being a burden (see Table 6)[58](Level III-3). The following tables indicate the factors that contribute to undermining a
resident’s dignity. Included are questions that can be asked to determine the resident’s concerns
as well as therapeutic interventions to help promote their dignity.
Table 5: A practical model of dignity-maintaining interventions regarding illness andageing considerations

Illness–ageing
related factors

Dignity-related questions

Therapeutic interventions

Is there anything we can do to
make you more comfortable?

Vigilance to symptom management

Symptom distress:
Physical distress

Frequent assessment
Application of comfort care

Psychological distressHow are you coping with what ishappening to you?

Be supportive
Empathic listening
Referral to counselling
Volunteer support

Medical uncertainty

Death anxiety

Is there anything more you would
like to know about your illness/ageing?
Are there things about the laterstages of your illness/ageing thatyou would like to discuss?

Upon request, provide accurate,
understandable information

Level of independence:
Independence

Has your illness/ageing made you
more dependent on others?

Involve residents in decision making,regarding both medical and personal
issues.

Cognitive acuity

Are you having any difficulty withyour thinking?

Treat delirium

How much are you able to dofor yourself?

Use orthotics, physiotherapy, andoccupational therapy

Functional capacity

When possible, avoid sedating
medication(s)(This table was adapted from the work of Chochinov and colleagues) [58]48 		 Guidelines for a Palliative Approach in Residential Aged Care

Table 6: A practical model of dignity-conserving interventions regarding psychologicaland spiritual considerations

Illness–ageing
related factors

Dignity-related questions

Therapeutic interventions

Continuity of self

Are there things about you thatyou consider are not affected byyour physical deterioration orlimitations?

Acknowledge and take interest in
those aspects of the resident’s lifethat he/she values mostRole preservation

What things did you do before
that are important to you?

See the resident as worthy of
honour, respect, and esteem

Maintenance of pride

What aspects about yourself or
your life are you most proud of?

Hopefulness

What things can you still do?

Encourage and enable the resident
to participate in meaningful or
purposeful activities

Autonomy/control

How in control do you feel?

Involve resident and/or their family
in treatment and care decisions

Generativity/legacy

How do you want to beremembered?

Making a life album i.e. audiovisualor photographic journals

Acceptance

How at peace are you with what Support the resident in their outlook
is happening now?

Resilience/fighting spirit

What part of you is strongest
right now?

Encourage to do things that enhance
sense of well-being, eg., music,
prayer, meditation, light exercise

Living in the moment

Are there things that take yourmind away from your physicalconcerns/limitations, and offer
you comfort?

Allow the resident to participate
in normal routines or take comfort
in momentary distractions, eg.
massage, meditation, patting
animals

Finding spiritual comfort

Is there a religious or spiritual
Make referrals to chaplain orcommunity that you are, or
pastoral care worker (see Glossary
would like to be, connected with? for explanation)

Perspectives:

Practices:Enable the resident to participate inparticular spiritual and/or culturally
based practices(This table was adapted from the work of Chochinov and colleagues) [59]Guidelines for a Palliative Approach in Residential Aged Care49

Table 7: A practical model of social dignity-conserving interventions regarding social
considerations

Illness-ageing related
factors

Dignity-related questions

Therapeutic interventions

Privacy boundaries

What is it about your privacy or
your body that is important to you?

Ask permission to examine resident

Who are the people that are mostimportant to you?

Liberal policies about visitation,
rooming in

Social support

Proper draping to safeguard andrespect privacy

Enlist involvement of a wide support
network
Care tenor

Is there anything in the way you aretreated that is undermining yoursense of dignity (or that makes you
feel ‘bad’ or ‘dirty’).

Treat the resident as worthy of honour,esteem and respect; adopt a mannerof conveying thisBurden to others

Do you worry about being a burden
to others? If so, to whom and inwhat ways?

With the resident and/or their family,
encourage explicit discussion about
these concerns with those they fear
they are burdening

Aftermath concerns

What are your biggest concerns forthe people you will leave behind?

With the resident and/or their family,
encourage the settling of affairs,
preparation of an advanced care plan,
making a will, and funeral planning(This table was adapted from the work of Chochinov and colleagues) [59]3.2 QUALITY OF LIFE
Quality of life is similar to the notion of dignity, in that it defies clear definition and yet isfrequently described as an essential aim of a palliative approach. An appropriate definition for
quality of life pertaining to older persons requiring a palliative approach is the one devised by
the WHO Quality of Life Group:[60, p. 153]
“Quality of life is defined as an individual’s perception of his/her position in life in thecontext of the culture and value systems in which he/she lives, and in relation to his/hergoals, expectations, standards and concerns. It is a broad-ranging concept, incorporating in
a complex way, the person’s physical health, psychological state, level of independence, social
relationships, personal beliefs and relationship to salient features of the environment.”
Quality of life measures usually include questions regarding the physical, social, psychologicaland spiritual domains. Other issues, such as sexual function, body image and financial
concerns, may be incorporated as well.[61] The following story indicates the need to always seek
the resident’s views on their care decisions and how they perceive their current quality of life.
Although family views should also be considered, the most important person in a palliative
approach is the resident.

50 		 Guidelines for a Palliative Approach in Residential Aged Care

Vignette 1: James’ story
James, an 89-year-old war veteran, came into the high care facility with one leg having
been amputated several years before. Now ischaemic heart disease and other medical
complications indicated his life expectancy was short. When the telltale signs of poor
circulation appeared in his other leg, a family meeting was called. “He couldn’t takeanother operation”, was the opinion of one son. “Can’t you just keep him comfortable?”
It was very difficult to keep James comfortable, because the pain was severe. No one atthat stage had thought to ask James, who appeared to be increasingly miserable, refusing
to get out of bed. Family and the aged care team agreed that he had “no quality of life”.
As the pain increased the doctor presented James with the options. “We could operate but
it would mean another amputation”’ James said, “Well, I’d rather have that than the pain.
The pain is killing me!” James’ post-operative recovery was uneventful, he ventured into
his self-propelling wheel chair again, his sense of humour returned and he lived for several
more months.

If a resident makes a statement that reflects a desire for hastened death, then it is essential that
this remark is comprehensively explored by a suitably qualified member of the aged care team,as illustrated by the stories of both James and Robert.

3.3 ‘DESIRE TO DIE’ STATEMENTS
Sometimes the aged care team caring for residents with an advanced disease or in the final
stages of the ageing process are confronted by statements indicating that the resident may wish
for a hastened death. Such statements may provoke concern and confusion for the aged careteam, who may be uncertain about how to respond. The team may find themselves grappling
to determine if the resident is depressed, suicidal or seeking help to hasten death; or they may
believe the expressed wish is an understandable response to the resident’s circumstances.[62]Occasional thoughts of suicide are not uncommon in palliative settings[63] (Level IV). However,sustained suicidal ideation is less common and all statements of this nature warrant care andattention[64] (Level QE).
• The reasons for ‘desire to die’ statements may be associated with issues such as:• feelings of hopelessness, depression, guilt, unrelieved suffering and a wish for selfpunishment[65] (Level EO);
• a perception of being a burden to others, anxiety, existential distress and family issues[66](Level EO);
• a sense of loss of dignity and a perceived lack of control[67] (Level EO); and• a sense of isolation, boredom and loneliness.
Any of these factors may lead to depression or contribute to a resident’s wish to hasten death.
Appropriate treatment may bring about a more hopeful outlook for the resident, even at theend of their life[64] (Level QE).

Guidelines for a Palliative Approach in Residential Aged Care51

Vignette 2: Robert’s story
Robert continually stated he wanted to die, refusing to eat and being reluctant tocooperate with any care offered. Eventually he was transferred to hospital for fullinvestigation and advice regarding his ongoing care. No physical cause could be found forhis wish to hasten death, although it was clear his weight loss and reluctance to accept
care would lead to life-threatening complications. He was returned to the facility ‘for apalliative approach’. A sensitive and discerning RN invited Robert to the care planningmeeting she’d arranged with Robert’s doctor and his family. On careful questioning it
became clear that Robert was grieving for his wife, who had recently died. He was also
angry that he had not been permitted to attend his wife’s funeral, family and staff having
decided he was too ill. When asked what his wishes were for the remainder of his life,
he was quite clear. He wished to visit his wife’s grave, he wanted the “damn catheterout” and did not want to be forced to eat. When these wishes were met, together withappropriate pain relief for symptoms recently developed, Robert stopped his saying “I want
to die” and became less distressed.

3.4 PRIVACY AND CONFIDENTIALITY
It is important to ensure that the aged care team maintains the privacy and confidentialityof the resident as much as possible. This can be difficult when family members demand toknow private information pertaining to the resident. Therefore, the aged care team need tohave an understanding of the relevant State and Commonwealth legislation, regulations andinstruments concerning privacy so they can be informed as to their legal responsibility toensure that the resident’s information remains private and confidential. Examples of legislation,
regulations and instruments include the Privacy Amendment Act (Private Sector) 2000, theFreedom of Information Act 1986, professional codes of conduct and Registration Acts.
In Australia, no medical services can be provided without the consent of the person concerned.
This consent is considered informed consent when the person assents to a treatment without
duress, voluntarily gives their consent after a reasonable time, and has been provided with adequate
information. The only exception to this is when the person’s capacity to consent is impaired by aserious mental illness, in which case the relevant State Mental Health Act can be invoked.
If a family member has been granted a legal right to make decisions for the resident, thenthe form stating this must be sighted by a member of the aged care team and its powers andlimitations noted on the resident’s record. The aged care team can then be directed by thisdocument as to how much information they are able to share regarding the resident. As thelegislation may vary regarding the responsibilities of people who are authorised ‘in advance’by the resident as ‘Enduring Power of Attorney’ (financial or medical) or ‘Enduring Power ofGuardianship’, it is incumbent upon each RACF to check legal requirements (see Appendix I‘Resource List’ for contact details).
Although residents with the capacity for informed decision-making must have the right to privacy
and confidentiality regarding their health care information and the right to exclude their family
members, it is rarely appropriate to exclude appropriate members of the family from acting as
the commonsense advocate for vulnerable older persons. The Guidelines on Privacy in the Private
Health Sector (available at www.privacy.gov.au/publications) allow disclosure of health information

52 		 Guidelines for a Palliative Approach in Residential Aged Careto a ‘responsible person’ (e.g. family member) when this is necessary for care and treatment or oncompassionate grounds. The aged care team can use professional judgement when defining the
responsible person to ensure that anxiety about privacy laws are not used as a means of excluding
caregiving family and friends from appropriate health information.
Care should be taken to ensure that all the steps are documented regarding a resident’s
treatment decisions. These decisions need to be regularly assessed to ensure that they are current
for the resident. It is also important that the aged care team be guided by legislation and otherrelevant documents and standards regarding what should be recorded on the resident’s file, whoshould have access to these records, and how these documents are to be stored.
Guideline:

Dignity and quality of life
Ref No.

Evidence
level

5.

6.

Factors that contribute to a person’s sense of dignity are a sense of control,
strengthened relationships with loved ones, the capacity to communicate,recognising friends and family members, being continent, adequate pain
and symptom management, and avoiding inappropriate prolongation of
dying. These factors are addressed by aged care team members when apalliative approach is implemented, thus enhancing the resident’s dignity
and his / her quality of life.

58

III-3

The provision of dignity-maintaining care can facilitate a more hopeful
outlook for the resident, thus reducing the resident’s desire for ahastened death.

63

IV

64

QE

IV
57

QE

13

Guidelines for a Palliative Approach in Residential Aged Care

53

CHAPTER 4ADVANCE CARE PLANNING

Care of any type involves decisions about how to actively pursue treatments, which treatments
to accept, and which treatments to refuse. These decisions take on greater complexity in
RACFs, where some residents may feel uncertain about discussing treatment options. An
advance care plan is an interactive process of communication between a competent resident
and the aged care team. The purpose of the advance care plan is to elicit the resident’s wishes
regarding treatment decisions, which will often include decisions related to their impending
death; to extend their autonomy, and to guide decision-making when the resident may berendered incompetent of doing so[68] (Level II). Advance care planning does not have to be alegalised formal process. It should revolve around ongoing communication with the resident
and/or family, as communication is the fundamental principle of advance care planning.
The Code of Ethics and Guide to Ethical Conduct for Residential Aged Care (2001)[69] statesthat providers should “…act in the best interests of residents in determining, particularly
before admission, whether or not the organization has the capability of providing them withcare appropriate to their needs” (p.9). The Code also emphasises the right of residents to makechoices about their care, including the right to refuse or agree to treatments offered. This code
is beneficial in providing the aged care team with direction regarding how to care for residents,
their families and carers. Another beneficial guide has been developed by the New South Wales
Department of Health, which is entitled Guidelines for Decision Making at the End of Life.
(Please note; these two documents are not research-based but reflect expert opinion).

4.1 IMPLEMENTING ADVANCE CARE PLANNING
Advance care planning empowers the individual to state their wishes in writing, in accordancewith how they define quality of life[14] (Level QE). By doing so, the burden of responsibility
is removed from the surrogate and control is maintained by the resident. When residents
are unable to express their own views regarding treatment, it is important for families to be
involved in all decisions about ongoing care, including the acceptance or refusal of certain
treatments. If these discussions do not occur, treatment decisions may be made by ‘default’,resulting in unnecessary transfers to acute care settings or other interventions that may not bein accordance with the goals of the aged care team and/or the family.
As with preparation of a will, these discussions can never occur too early, and having a
discussion about advance care planning before admission to an RACF is an excellent first step.
If this preliminary discussion has not occurred, a discussion will need to be initiated at the timeof admission. At this time, there may be special considerations if the resident is no longer able
to make their wishes known (see Chapter 5, ‘Advanced dementia’). Ongoing discussion andupdating of perceptions and wishes relating to advance care planning are also essential, as they
help ensure that communication on these matters remains current.

Guidelines for a Palliative Approach in Residential Aged Care

55

Advance directives can be a part of the process of advance care planning. The proper use ofadvance directives in clinical practice is dependent upon the aged care team’s knowledge ofthe legal status of these documents[70](Level QE). Advance care planning documents varyconsiderably. They include a variety of legal documents as well as less formal documents forascertaining a resident’s end-of-life wishes. These types of documents often aim to address
issues such as pain control and comfort care.[71] (For examples of some advance directives, see
Appendix J.)
The following story illustrates how knowledge of a resident’s preferences for treatment options
can facilitate care plans.

Vignette 3: Mrs Adams’ Story
Mrs Adams had lived alone, suffering from a chronic, degenerative condition and requiring
frequent hospitalisation over many years. When she could no longer care for herself athome she made her wishes quite clear after admission to the high-care facility. “If I’m everin the position where I can’t answer for myself please take me to my hospital. They havea huge file on me there. They know me well. They’ll say ‘Here comes Lily again’ as I comethrough the door and I know they’ll try their hardest. Then, if they can’t do anything for me,
they can send me back here to my second home.”
Two weeks later Mrs Adams suffered a brain stem stroke. She was immediately transferredto ‘her’ hospital for diagnosis, with comprehensive documentation outlining her wishes
and advance care planning. It was anticipated Mrs Adams would not regain consciousness.
Through consultation with the hospital it was agreed that Mrs Adams should return to thefacility for a palliative approach, where she died 48 hours later surrounded by her family.
Her wishes had been respected and the changed goals for care were achieved.

Before a resident is transferred to another facility, it is beneficial for them and/or their family tohave the reasons for the transfer explained. These discussions can provide an opportunity for the
resident and/or the family to talk about the future, their fears or uncertainties, and some of thetreatment options that might arise. Such discussions can also empower the aged care team byproviding an opportunity to raise such issues with the resident and/or family.
Ideally, an advance care plan will involve a discussion with the resident, the family and thehealth care team[72] (Level QE). A facilitated discussion about advance care planning between
residents and the aged care team helps define and document the resident’s wishes[73] (Level II).
When a plan is systematically implemented in RACFs, residents and families report satisfaction
with their involvement with end-of-life decisions[68] (Level II). When a competent person
makes an advance directive it is considered, legally, to support that person’s common law rightto refuse treatment.
Rempusheski and Hurley (2000)[74] argue that it is appropriate for the aged care team to haveongoing discussions about advance care plans with family members to plan end-of-life care thatis appropriate for the resident. These advance care plans may also include treatment decisions
for acute episodes such as hip fracture or pneumonia. A transition period to facilitate theresident’s ‘settling into’ the RACF should be provided for the new resident and family members

56 		 Guidelines for a Palliative Approach in Residential Aged Care

before discussing the advance care plan in detail. These discussions require clear communication
and assessment strategies regarding the goals and expectations of treatment[75] (Level QE).
These discussions should involve family members and carers, and their involvement in planningthe management of critical changes in the resident’s condition should be actively promoted
within the RACF. However, family members should not be compelled to participate in suchdiscussions. Instead, it is suggested that family members be consulted about their capacity or
willingness to be involved in a palliative approach to the resident’s care, particularly when it
involves providing direct assistance.

4.2 ADVANCE CARE PLANNING FOR RESIDENTS WITHADVANCED DEMENTIA
Discussions about advance care planning should ideally involve the resident, but when they are
suffering from dementia the situation becomes more complicated. According to Rempusheski
and Hurley (2000)[74] (Level EO), these discussions should occur around the time of diagnosis
because a resident’s cognitive ability may decline with time. This may mean the resident canbe involved to a degree, but often the role of making such decisions will soon fall to family
members instead.
The evidence suggests that family members of people with dementia may have unresolved
emotional needs stemming from the illness itself, and from their relative’s admission into an
RACF, that find them unprepared for involvement in end-of-life treatment decisions[76] (Level
QE). Yet they are often required to make a wide range of decisions about the daily lives ofresidents regarding their quality of life and quality of treatment and health care[77] (Level QE).
To assist them in these decision-making efforts family members need information about the
expected trajectory of the resident’s disease and factors that might impede a natural death[76](Level QE). They may also need emotional support and information about what is meant by apalliative approach, so that they can process difficult and painful emotions.[76] Access to welltimed support and sensitive information may help families cope more effectively and allow
them to contribute to end-of-life care decisions with more comfort.
Hurley and colleagues[78] (Level QE) developed a four-phase model for the process ofrecommending treatment decisions for residents with Alzheimer’s. The model aimed atachieving consensus between staff, family and the resident by considering how issues were raisedand discussed by each party during family conferences. The authors concluded that timing
and trust were influential catalysts to family and staff readiness factors for achieving consensus;
outcomes were the advice provided by staff and the family conference where treatment options
were determined; and consequences included the advance proxy plan and patient care.

4.3 LEGAL CONSIDERATIONS AND DOCUMENTATION
An initial assessment of the resident’s wishes alone is inadequate, because it does not ensure thatthe resident’s current requirements are documented. Research has indicated that it can take aresident between 3 and 18 months to develop a comprehensive advance care plan that addresses
all relevant issues as the state of health changes over time[68] (Level II). Therefore it is advisable

Guidelines for a Palliative Approach in Residential Aged Care57

to commence discussions before or at the time of admission and to review the advance care plan
document several times to ensure that it is comprehensive. Although it is preferable that suchdiscussions take place with the resident’s GP before admission, this can still be done as soon aspractical after admission.
If the resident cannot manage a great deal of decision-making in one sitting, it is still possible todetermine their basic values and wishes immediately. For example, it may be possible to determine
whether the resident wants life-sustaining treatment and under what conditions, and whether theywant to be transferred to hospital or remain in the RACF if they become acutely ill. Additional
wishes can be recorded over time. When adequate time has been taken to discuss relevant issues
related to advance care plans, the aged care team is better able to respond to questions as theyarise and as circumstances change. This may involve arranging for a legal representative to visit theresident, ensuring appropriate privacy and providing assistance when needed.

4.3.1 Legal requirements
If the resident has lost their cognitive abilities, their appointed representative should be asked tomake such basic decisions at the time of, or soon after, admission.
In some jurisdictions, the appointment of an ‘enduring health advocate’ has been given legal
recognition by special legislation. This legislation allows a person to appoint someone to makedecisions about medical treatment on their behalf if they become incapable of making suchdecisions for themselves. Such an appointment is made under an ‘enduring power of attorney(medical treatment)’, sometimes referred to colloquially as a ‘living will’. Some forms ofartificial nutrition are regarded as medical treatment rather than palliative care (see Gardner; re
BWV [2003] VSC 173 [29 May 2003]). Therefore, a simple enduring power of attorney thatcovers financial and lifestyle decisions, but not medical treatment, might not be sufficient toensure that a resident’s preferences regarding artificial nutrition can be acted upon.
A person who is required to make a decision on behalf of another person under an enduring
power of attorney (medical treatment) must take into account:• what would be in that person’s best interests; and• how that person would have acted if they were not incapacitated.
If a resident has already lost the capacity to make reasonable judgements, it is not possible forthem to appoint someone to make decisions for them under an enduring power of attorney(medical treatment). If a decision needs to be made about continuing or ceasing artificial
nutrition for a resident in this situation, it might be necessary for a guardian to be appointed tomake the decision.

4.3.2 Documenting the plan
The best way to document advance care plans is in the resident’s case notes, or to note
recommendations for revisions to such plans when the resident’s circumstances change, as
directed by legislation in the particular State or Territory. Additionally, the following triggers
may help determine the need to reassess a resident’s advance care plan:

58 		 Guidelines for a Palliative Approach in Residential Aged Care• A change in their health status;• A change in personal/carer situations (e.g. if a spouse or other person who is the appointed
decision-maker dies or loses capacity);• Transfer (either into or from the facility)[79] (Level EO) recommend that a plan of care betransferred with the resident, as with other medical documentation; and• Routine requirement, such as a review period scheduled for every three months[80] (Level QE).
Studies have shown that education about advance care planning for the aged care team,residents and their families increases the likelihood of these plans being completed andimplemented in RACFs[68] (Level II). A corresponding increase in satisfaction for the family
about the resident’s end-of-life care also occurs when the family has been educated about
advance care planning[68] (Level II).
The following story illustrates the benefits of including the family in advance care planning toensure the aged care team is aware of the resident’s preferences.

Vignette 4: Mr Jones’ story
Mr Jones suffered from chronic obstructive pulmonary disease, epilepsy and dementia.
As he was unable to articulate his own concerns, his family clearly stated their preference
should his symptoms warrant urgent attention: “He’s absolutely terrified of hospital.
We’d hate him to be sent off alone by ambulance in the middle of the night.” A family
conference was arranged in consultation with the local medical officer and advice wasreceived from the regional palliative consultant, who had particular expertise in managing
respiratory crises. A step-by-step plan was formulated and shown to the family. The plan
proved effective on several occasions when Mr Jones suffered distressing symptoms ofdyspnoea. An appropriate plan was also developed for his epilepsy. When he suffered amajor seizure, the crisis was managed in the aged care facility. Both the family and theaged care team expressed satisfaction that his symptom control could be managed well by
the nurses, that he had a well-formulated care plan, and that he was spared a distressing
and disorienting hospitalisation.

4.4 THE RIGHT TO REFUSE FOOD
Consenting to food or refusing food is an expression of the resident’s autonomy.[81] (Level EO)
One of the most difficult ethical issues that families and aged care teams confront is uncertainty
about how to manage residents who refuse food or can no longer eat.
Use of advance care plans is one way for the aged care team to discuss the resident’s and family’sviews and preferences regarding feeding and artificial nutrition. These discussions also offer
an opportunity for the aged care team to give information to the resident and family about
appropriate options. Families who do not have access to sound information may make decisions
on behalf of the resident that are difficult to reverse and that they may later regret.
In some instances there may have been no discussion regarding the resident’s preferences
regarding feeding or artificial nutrition. As well, there are times when residents refuse to eat
and the aged care team and family may feel uncertain about how to respond. A review of

Guidelines for a Palliative Approach in Residential Aged Care59relevant literature revealed little empirical work to inform this issue. However, in situationsof food refusal in people with advanced dementia, the experts in the field offer threerecommendations:[81]1.

Consider if the cessation of eating is in keeping with an overall deterioration in theresident’s health status;

2.

Exclude the possibility of a treatable condition like an infection that could affect cognitive
ability and appetite; and3.

It may still be appropriate to offer small amounts of food and fluids, even if the person isdying — but do not use undue force and always defer to the resident’s cues.

Additionally it is stressed that, even when a resident is no longer taking food or fluids,
exemplary mouth care must be maintained (see Section 6.9, ‘Mouth care’, for more details).
Gillick (2000)[82] (Level EO) recommends that, due to the evidence regarding the questionable
benefits of tube feeding, artificial nutrition should not be initiated as a general rule (see Section
6.4, ‘Nutrition and hydration’).
In summary, there is compelling evidence to support the use of advance care planning in a
palliative approach. Therefore, RACFs should engage in some form of regular educational
programs for the aged care team, residents and their families on the issues around end-of-life
care, a palliative approach, and advance care planning. This will help residents communicate
their wishes and will enhance their sense of control. The process will also help to acknowledge
the role of the family in the aged care facility. An additional recommendation is that asystematic approach to advance care planning be incorporated in RACFs[68] (Level II); [73](Level II). Whether or not there is access to an advance care plan for each resident, it isimportant for the RACF to provide opportunities for end-of-life matters to be discussed withthe multidisciplinary team whenever required.
Guideline:

Advance care planning
Ref No.

Evidence
level

7.

Systematic implementation of advance care planning that involves
communication between the resident, family, and doctor increases
resident’s and his / her family’s satisfaction with end-of-life care.

68, 73II

8.

Regular education programs for the aged care team and residents and theirfamilies on issues about end-of-life care and advance care plans increases thefrequency of these plans being completed and implemented, which increases
the resident’s and his / her family’s satisfaction with end-of-life care.

68

II

9.

Developing comprehensive advance care plans that include ongoingassessments responds to changes in the resident’s health and increases theresident and his / her family’s satisfaction with care.

68

II60 		 Guidelines for a Palliative Approach in Residential Aged Care

CHAPTER 5ADVANCED DEMENTIA

Advanced dementia, also known as ‘late stage’ or ‘severe’ dementia, is a neurological diseasecharacterised by severe cognitive decline of an irreversible nature. It is associated with poor
prognostic factors such as swallowing disturbance, weight loss, dysphagia, anorexia, andbowel and bladder incontinence, and often results in the person being bedridden[83](Level II). The progression from diagnosis of advanced dementia to death is usually three
years[50] (Level III-2), and poorer prognosis is likely if the resident develops an acute illness
such as pneumonia[84] (Level III-2) or an infectious disease[50] (Level III-2). Thus, advanced
dementia is a progressive degenerative disease that is life-limiting, and a palliative approach tocare should be offered[44] (Level III-2).
The fundamental principle in caring for residents with advanced dementia is to understand that
their dementia will not necessarily follow a predictable course. Consequently, prognosticationis unlikely to be beneficial for determining survival rates for these residents. However, the agedcare team should have an understanding that advanced dementia is a life-limiting progressive
disease. The resident’s family should also be helped to understand this information and be given
the opportunity to discuss how a palliative approach can be of assistance.

5.1 HOW PREVALENT IS DEMENTIA?
According to a recent report, more than 162,000 Australians had dementia in 2002, and it isanticipated that 500,000 people will have dementia by the year 2040.[5] Dementia is currently
the second largest cause of disability in Australia (depression is the first) and by 2016 dementia
is expected to be the primary cause of major chronic illness[5] (Level QE).
Approximately half of the people diagnosed with dementia live in an RACF.[85] Overall, 30%of residents in low-care facilities and approximately 60% of those in high-care facilities havedementia. Only 10% of high-care residents have no cognitive impairment.[85] However, thisdata is based upon a documented diagnosis, suggesting these figures probably underestimate theprevalence of the condition.

5.2 ADVANCED DEMENTIA AND A PALLIATIVEAPPROACH
There is evidence to suggest that a palliative approach benefits not only the person with thedisease but also their family[86] (Level QE). The features of a palliative approach consideredmost helpful to the family are continual follow-up evaluation, attention to all symptoms
causing distress, emphasising the resident’s quality of life, promoting the resident’s dignity,

Guidelines for a Palliative Approach in Residential Aged Care61

and a tendency to avoid hospitalisation[86] (Level QE). Underlying a palliative approach is theassumption that all residents with advanced dementia should be thoroughly assessed with aview to managing all treatable causes of confusion.
Preliminary investigations of the concept of personhood within palliative care have begun
to determine if this holistic approach contributes to an individual’s sense of dignity.[87] For
example, in one study, staff were asked how they helped individual’s cope with the multiple
loses involved with terminal illness. Among the concepts identified were “normalising”
distressing symptoms such as body odour, encouraging patient activities, and personalising
their living spaces[87] (Level QE). This approach parallels Kitwood and Bredin’s (1992)[88] (Level
EO) concept of personhood as a holistic nursing approach for interacting with residents withdementia, which is practised in several Australian RACFs. However, further evidence is required
before the concept of personhood and its applicability for use with residents who require a
palliative approach can be considered as the basis for evidence-based guidelines.

5.3 ASSESSMENT
A study of 20 health districts in the United Kingdom (UK) found that the symptoms mostcommonly identified in the last year of life were: confusion (83%), urinary incontinence(72%), pain (64%), depressed mood (61%), constipation (59%) and poor appetite (57%)[89](Level QE). Symptoms of people with dementia were compared to the symptoms of people
with cancer and it was found that people dying from dementia have symptoms and healthcare needs comparable to those dying from cancer. In any assessment of a resident withadvanced dementia, their current health status and past medical history should be considered.
This approach rules out other symptoms or concerns that may be prompting a resident tohave increased agitation or aggressive behaviours (for example, history of breast cancer andsubsequent bone metastases must be considered).

5.3.1 Pain assessment
One of the most difficult aspects for the aged care team who is caring for the resident withadvanced dementia is assessing whether they are experiencing pain. One study conducted in the
United States (US) compared the rating by residents of their pain intensity to the rating givenby their nursing staff [90] (Level QE). The study reported disagreement between residents’ andnurses’ perceptions of pain-related behaviours, raising concerns about the abilities of nurses tocorrectly assess the pain of residents who are unable to communicate. This study also compared
the perceptions of family members and aged care team members regarding the resident’s pain
and found that agreement of both nurse and family member’s assessment of pain in the resident
was poor[90] (Level QE). The majority of nurses felt that assessing pain levels in residents withcognitive impairment was more challenging. However, it should be noted that members of
the aged care team who have cared for a resident for some time may be the first to detect any
changes in their condition.
Cohen-Mansfield and Lipson (2002)[91] (Level IV) found that geriatricians were able to evaluate
pain effectively in moderately cognitively impaired, but were less successful in evaluating painin the severely cognitively impaired.

62 		 Guidelines for a Palliative Approach in Residential Aged CareA study was conducted to investigate the prescription and administration of analgesic
medications to treat pain in 339 cognitively impaired nursing home residents (average age of
87 years)[92] (Level QE). Forty-six percent of the sample had diagnosed cognitive impairment,
and 55% had at least one diagnosed painful condition. The results indicated that cognitively
impaired nursing home residents were prescribed and administered significantly less analgesic
medication, both in number and in dosage of pain drugs than their more cognitively intact
peers during the same period. Those residents who were more disoriented and withdrawn wereprescribed significantly less analgesia by physicians and residents who were more disoriented,
withdrawn, and functionally impaired residents were administered significantly less analgesia by
nursing staff. The authors’ concluded that the findings highlighted the difficulties of assessing
pain in cognitively impaired elders and the lack of knowledge among health care providers
about effective pain management[92] (Level QE).
When residents with advanced dementia cannot voluntarily control their expressions or
vocalisations, members of the aged care team need to assess the resident’s pain by observing
their behaviour and facial expressions as indicators of internal states. Therefore, the conceptof a pain assessment tool for advanced dementia is that discomfort is observed but the patientcannot verbally express it.
Several tools have been developed to assist the aged care team to assess pain in residents withdementia. However, many of these tools are complex and are not often used well in clinicalsettings. Validated pain scales are considered more accurate for determining pain intensity thanother methods. However, studies indicate that there are poor completion rates for older persons
with advanced dementia using a variety of pain scales. One study assessed the ability of residents
to complete five frequently used scales (average age was 85 with a mean MMSE score of 12)[93](Level IV). Only one-third of the residents could complete all of the scales, though 83% could
complete at least one scale. The authors surmised that most residents with advanced dementia
could complete at least one bedside assessment tool, but that significant patience and time wasneeded to determine the most suitable tool for the resident and to await their responses.
The Residential Aged Care Pain Management Guidelines[94] recommend that the Pain Assessment
in Advanced Dementia Scale (PAINAD)[95] is the standardised tool for use in Australia forresidents with advanced dementia. The PAINAD scale is easier to administer and score thanthe Discomfort Scale for Dementia of the Alzheimer’s Type, upon which it was based[95] (Level
QE). The PAINAD scale is a five-item observational tool based on behavioural observations,with a scale of 0–2 for each item, as follows:[95]• Breathing (independent of vocalisations) — normal (0) vs laboured (1) vs noisy laboured, orlong periods of Cheyne-Stokes respirations (2);• Negative vocalisation—none (0) vs occasional moans or muttering (1) vs repeated troubled
calling out or loud moaning or crying (2);• Facial expression—smiling or inexpressive (0) vs sad, frown (1) vs facial grimacing (2);• Body language—relaxed (0) vs tense and pacing (1) vs rigid with fists clenched, or striking
out (2); and• Consolability—no need to console (0) vs distracted or reassured (1) vs unable to distract orconsole (2).

Guidelines for a Palliative Approach in Residential Aged Care63

Unfortunately, there is little research regarding the PAINAD Scale, and further validation isrequired before its use can be supported.
Recently a new tool has been specifically developed for people with advanced dementia: theAbbey Pain Scale.[96] This scale has been trialled in RACFs in various states of Australia andreasonable validity levels have been reported[96] (Level IV). The scale is based on the assumptionthat a perception of pain severity by nurses is the best indicator in these circumstances fordetermining a resident’s pain intensity. Although further substantiation of this scale is required,given its brevity and reasonable preliminary validity estimates the tool has merit and may be
helpful for use in RACFs.
Some additional tips for improved assessment of pain in patients with dementia include:• Ask ‘yes/no’ questions;• Palpate areas while asking questions;• Ask ‘yes/no’ questions;• Use simple descriptor (aching, hurting);• Assess pain associated with movement;• Don’t dismiss pain behaviours as ‘just part of dementia’;• Also consider UTI, constipation, urinary retention, compression fractures;• Ask family about previous pain complaints; and• Assess pain in any patient with poor sleep, appetite, change in function or agitated behaviour.
Systematic evaluation of end-of-life care for people with advanced dementia has beenhampered by a lack of appropriate evaluation tools[97] (Level QE). Consequently, several scales
and assessment tools have been developed as outcome measures to assess the effectiveness oftreatment in end-of-life care:• the Assessment of Discomfort in Dementia (ADD) protocol)[98] (Level IV); and• the Discomfort Scales for Dementia of the Alzheimer Type (DS-DAT)[99] (Level III-3).
These tools were developed to improve the recognition and treatment of physical pain andaffective discomfort in people with advanced dementia who can no longer articulate their careneeds. The ADD was shown to prompt action to effectively decrease symptoms in 83.5% ofa sample of people for whom it was trialled; this supports the notion that people with severe
dementia can be assessed and treated for pain and discomfort[98] (Level IV). However, bothscales are considered very difficult and time-consuming to use and thus, are not recommended
for use in daily assessment of pain, but rather for assessing end-of-life care.
In using these tools, it is important to listen to the care assistants and nurses involved in the
direct care of the resident because they have often learned the resident’s cues and may be able
to interpret the resident’s needs. It is also important to include a reassessment of the resident’s
medications to determine if any changes are required.

64 		 Guidelines for a Palliative Approach in Residential Aged Care

5.3.2 Acute illness
One study found that individuals with advanced dementia who are admitted to hospital withacute illness after having been under the care of a palliative team may have their preferences fora palliative approach abandoned by the hospital staff, resulting in more aggressive treatments[83](Level II). The limitations of the study included a small sample size and the possibility that the
research team intervened in treatment plans by their mere presence. However, the study highlights
the need to prioritise goals of treatment before a person is sent to hospital. Another study
documented the extent of disruption to the resident when inappropriate hospitalisation occurs,
and recommended a shift from cure-oriented interventions to comfort care[50] (Level III-2).

5.4 MANAGEMENT
Aggressive medical treatment of infections is not effective in preventing the progression ofseverity in dementia of the Alzheimer type[44] (Level III-2). However, despite a lack of soundresearch upon which to base use of systemic antibiotic therapy for people with a poor prognosisof severe end-stage dementia in the last six months of life, there is evidence that this practice isprevalent[100] (Level IV). People with severe dementia receive similar treatment to those withmild or no dementia. It has been argued that antipyretic measures (medicines that lower the
body’s temperature to prevent or alleviate fever) for symptom relief may be appropriate in thispopulation. However, the evidence suggests that the cost of hospital care for fever managementof people with advanced dementia is financially and emotionally too high[50] (Level III-2).
Instead, it is recommended that a palliative approach be used for the comfort of the resident,
though this may include short-term antibiotic therapy with the intention of easing symptoms
and improving quality of life[50] (Level III-2).
End-of-life treatment decisions need to take into account any significant co-morbidities of
the resident, to ensure that treatment or refusal of treatment is appropriate. For example, one
study found that people with advanced dementia and hip fracture or pneumonia had a 53%
and 55% mortality rate at six months respectively, compared with 13% and 12% for people
who were cognitively intact[12] (Level III-2). The mortality rate of those who subsequently
acquire pneumonia is dependent on the severity of the dementia, in conjunction with otherintermediary factors that actually cause mortality[84,101] (Level III-2; Level EO). Residents withmoderate dementia who had lost a significant amount of weight and had aspirated, had anincreased risk of mortality within three months of pneumonia. From these studies it would
appear that advanced dementia is a significant co-morbidity.
The palliative approach for residents with dementia is focused entirely on the resident’s
preferences and is aimed at enhancing their quality of life. Decisions should ideally involve theresident’s family or other suitable persons to act as the resident’s proxy in providing information
to the multidisciplinary team on the resident’s preferences, personal values and history. The agedcare team may be able to contribute observations to the discussions, particularly observations
during any moments of lucidity when the resident may say something about their desires for
specific treatments. The aged care team also needs to develop an understanding of the resident’s
unspoken communication, such as facial movements, to indicate levels of pain and/or distress.

Guidelines for a Palliative Approach in Residential Aged Care65

A systematic review of current best practice on physical restraint in acute care settings and
RACFs recommended that restraint-free care be provided through the Restraint Minimisation
Program[102] (Level II). The program has two components: 1) education to change the cultureof the organisation and to provide strategies to remove restraints; and 2) restraint alternatives.
The specifics of the restraint alternatives should be used with caution, as little evaluation has
been completed[102] (Level II).
In the UK, around 80% of people diagnosed with Alzheimer’s have eating difficulties so the
problem is substantial for those involved with patients with dementia.[103] It is likely that similar
figures would exist for Australian residents with Alzheimer’s disease. Despite these statistics,
there is little clear evidence on best approaches regarding handling food refusal and dysphagia
in older people with dementia. Based on a systematic review of the nursing managementof dysphagia in adults with neurological impairment,[104] (Level III-1), the Joanna Briggs
Institute[105] has developed some guidance regarding dysphagia management, which is discussed
in Section 6.8 ‘Dysphagia’.
Additionally, evidence-based parameters dealing with pharmacologic and non-pharmacologic
treatments for dementia management have been developed in the US; however, because
these parameters were not specific to the palliative population their appropriateness for thispopulation requires further research and guidance[106] (Level II).

5.5 FAMILY SUPPORTFamily members of residents with dementia may have unresolved emotional needs, stemmingfrom the illness itself and RACF placement, that may make it difficult to be involved in endof-life treatment decisions[76,77] (Level QE; Level QE). It is the responsibility of the aged careteam to encourage and facilitate family involvement. However, the team must avoid making
negative judgements about family members whose involvement appears (to team members) to
be inadequate or if family members choose to withdraw.
Care planning meetings need to be held to protect the vulnerability of residents with advanced
dementia and to ensure that, where appropriate, families are involved in decision-making[76,77](Level QE; Level QE). The aged care team also needs to be aware that families and carers of aresident with dementia are at great risk of psychological problems, due to the prolonged dying
trajectory of the resident[107] (Level QE). The following story illustrates the need for the agedcare team to be flexible in their involvement with the family, to ensure they are able to cope andparticipate in the demands of decision-making.

66 		 Guidelines for a Palliative Approach in Residential Aged Care

Vignette 5: Anna’s story
Anna was an 82-year-old lady originally from Germany. She was admitted to the dementia
unit shortly after the death of her husband. Anna had one adult child, Helen, who found it
extremely difficult to accept her father’s death and her mother’s declining mental capacity.
Helen held legal power of attorney and was the immediate next of kin for her mother.
However, Helen evaded attempts by staff to involve her in planning for her mother’s care.
Over a short period of time Anna’s physical health began to deteriorate significantly. She
began to suffer more frequent angina attacks and became wheelchair-bound as a resultof a fall, which had fractured her right hip. Anna’s condition deteriorated when her oxygen
levels fell severely and she experienced extreme tiredness and shortness of breath.
Attempts to engage the daughter, Helen, in care planning meetings were unsuccessful.
Eventually contact was made with Anna’s adult grandson, David, who at this critical timeassisted staff to make pertinent decisions about Anna’s health needs. Despite Anna’s mental
confusion and her ill health, she recognised David and responded well to his suggestions
about her health needs and care options. With Anna and Helen’s agreement, staff members
were able to liaise directly with David about the level and type of care provided to Anna in
the final stages of her life. Through David, the aged care team was also able to explain thephysical and psychological processes Anna was going through, enabling him to more fully
support his grandmother and to keep other family members advised of her situation.
Guideline:

Advanced dementia
Ref No.

Evidence
level

10.

For residents with advanced dementia, the implementation of a palliative
approach that incorporates ongoing assessment, attention to distressing
symptoms, avoidance of hospitalisation and which emphasises andpromotes the resident’s quality of life and dignity will benefit the family
as well as the resident.

86

QE

11.

Remaining in their familiar surroundings is beneficial for residents withadvanced dementia because this helps maintain their care plans andfacilitates residents’ feelings of orientation and security.

83

II

12.

Assessment of residents with advanced dementia using dementia-specificpain assessment tools results in more attentive symptom relief for painand discomfort.

93

IV

13.

Aggressive medical treatment of infections is not recommended forresidents with advanced dementia. Instead, a palliative approach issuggested for the resident’s comfort, which might include short-term
antibiotic therapy to ease symptoms and improve quality of life.

44

III-2

The use of restraints within RACFs is associated with adverse outcomesfor residents such as an increase in distress and the risk of injury.
Developing a policy of restraint-free care that includes strategies andan education program to minimise restraint use can reduce residents’
distress and the risk of falls-related injuries.

102

II

104

III-1

14.

50

Guidelines for a Palliative Approach in Residential Aged Care

67

CHAPTER 6

PHYSICAL SYMPTOM
ASSESSMENT AND
MANAGEMENT

To cure sometimes
To relieve often
To comfort always
Anon
Failing to relieve physical symptoms and the associated distress is a major cause of loss of qualityof life and suffering in the aged care population[108] (Level III-2). For this reason, those working in
the aged care sector have identified the management of symptoms as a priority area.
This chapter provides guidelines for the assessment and management of physical symptoms
frequently experienced in the final phase of illness and/or the ageing process, with a focus on
symptoms relevant to RACF residents. Where there is limited research in the specific areaof aged care and a palliative approach, research from pain studies has been reviewed for its
appropriateness to the aged care setting. Recommendations and examples are provided, as well
as a review of the barriers to achieving symptom control in this resident group.
Note that there are existing guidelines — Therapeutic Guidelines: Palliative Care[109] — which
outline the clinical assessment and therapeutic management of symptoms frequently
experienced by people receiving a palliative approach. Issues covered include pain, symptom
control and fatigue. It is recommended that facilities refer to these Guidelines for specificassistance with care management.

6.1 SYMPTOM ASSESSMENT
Residents living in RACFs who require a palliative approach can experience a range of physicalsymptoms that require prompt attention, such as fatigue, pain, dyspnoea, constipation andanorexia[108] (Level III-2), and most residents also have dementia. Therefore, holistic care that
focuses on regular, detailed assessment and review, establishing as far as possible the resident’s
priorities and goals for treatment, is central to a palliative approach in RACFs. Studies ofpeoples’ (including families’) perceptions of the things that are important to them in end-of-lifecare found that adequate pain relief and symptom management were crucial[110] (Level IV).
Symptom assessment needs to be carried out on a regular basis to respond to changes in theresident’s physical health as well as potential changes in their goals for care. Care based on theuse of reliable and validated assessment tools has been shown to decrease the distress occurring
due to a range of symptoms, including, pain, decubitus ulcers, mucositis and bowel problems

Guidelines for a Palliative Approach in Residential Aged Care69

(see Fainsinger, Miller and Bruera (1991)[111] in Reference List for example). Assessment ofcommon problematic symptoms in this group of residents assists in the provision of adequate
and timely care. The common areas of symptom distress include nutritional problems, bowel
problems, dyspnoea, fatigue, insomnia, pain, nausea and dysphagia[108] (Level III-2).
A detailed assessment is the cornerstone of all symptom management, and includes areview of possible causes, the history of the symptom and the impact of the symptom on
all aspects of the resident’s daily function. The quality of the assessment depends upon thecommunication skills of the aged care team in ensuring that the experiences and distressof the resident are understood and accurately interpreted. A comprehensive assessmentof the resident’s concerns, including early identification of their main symptoms, leads toappropriate treatment plans[112] (Level IV). Central principles to assessment include: [112–115](Level IV; Level IV; Level IV; Level QE)• ongoing assessment, not a single event;• self-reporting (for the cognitively intact, this is the most accurate source of information);• identification of the best proxy (for residents unable to communicate) to ensure the resident’s
wishes are considered;• discussion of the efficacy of any interventions tried or being considered (assessment should
not be limited to an exploration of symptoms);• clear documentation of all assessments;• all relevant members of the aged care team providing input;• a focus on psychological, social and spiritual domains;• agreement, whenever possible, on the goals of care by the resident and/or family/proxy; and• consideration of the disease trajectory/ageing process for each resident, as this may have
implications for management.
RACFs already use a variety of tools to assess residents’ symptoms. Various tools that have beenvalidated will be highlighted throughout these Guidelines. It is anticipated that RACFs canadopt these tools for use; however, there is no one tool that is recommended.
The use of symptomatic assessment can result in a quicker response to symptom control. If asystematic assessment of symptom distress is not undertaken, then this increases the likelihood these
symptoms will be under-treated. Overall, assessment tools have demonstrated an improvement in
the management of symptoms when used in conjunction with a detailed clinical interview.
There are tools for assessing specific conditions such as pain, shortness of breath anddepression (See Sections 6.2, ‘Pain management’, 6.9, ‘Dyspnoea’, and Chapter 7,‘Psychological support’, for further information on specific assessment tools). As the distressof symptoms is a subjective matter, the ‘gold standard’ is the resident’s own assessment[116](Level III-3). Unfortunately, few tools are validated in RACFs; therefore, those frompalliative settings may be the best currently available.
Three symptom screening tools used in a palliative approach that have been successfully usedwith older persons are listed below.

70 		 Guidelines for a Palliative Approach in Residential Aged Care

The Edmonton Symptom Assessment Scale (ESAS)[116] (Level III-3) was derived from themeasurement of different symptoms using 0- to 10-cm visual analogue scales. The ESAS has
been validated in the cognitively intact terminally ill population and is frequently used inclinical studies as an assessment tool. Individual symptoms evaluated in the ESAS include
pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, sensation of wellbeing, andshortness of breath. For all items, 0 is absence of the symptom or best possible status, and ascore of 10 indicates the worst possible status. An overall distress score is calculated by averaging
the individual symptom scores.
The Symptom Assessment Scale (SAS)[117] is used to assess symptoms commonly found inindividuals in palliative settings, many of whom are older and a large proportion of whom
have cancer. Participants are asked to rate each of the following symptoms according to theirintensity: insomnia, appetite problems, nausea, bowel problems, breathing problems, fatigue
and pain. Absent symptoms are assigned a 0, and symptoms that are present are rated from1 (minimal problem) to 10 (worst possible). Scores are not generally totalled. Sometimes family
members and the aged care team sometimes provide proxy responses using the SAS when the
person is unable to respond, using their knowledge of ways in which these individuals generally
present when experiencing these symptoms.
The Abbey Pain Scale[96] (Level IV) is a new Australian tool, specifically developed for people
with advanced dementia. The scale is based on the assumption that nursing staffs’ perception ofpain severity is the gold standard for determining a resident’s pain intensity. Although further
substantiation of this scale is required, given its brevity and validity it may be a worthwhile
addition to pain assessment.
Guidelines:

Symptom Assessment
Ref No.

Evidence
level

15.

The development of a treatment plan that is based on a comprehensive
and ongoing assessment of a resident’s needs and wishes, which includes
early identification of the main symptoms, provides effective symptom
management in accordance with the resident’s goals for care and their
specific treatment preferences.

112

IV

16.

Implementation of a palliative approach that includes adequate relief of painand effective symptom management increases residents and their families’
satisfaction with the care that is provided.

110

IV

17.

A simple method for regular assessment of symptom distress is to ask
residents for their own determination of the intensity of their physical andpsychological distress. Regular assessments will improve the effectiveness of
symptom management and enhance residents’ quality of life.

116

III-3

6.2 PAIN MANAGEMENT
Pain is under-treated in many clinical settings.[118] Pain management requires a systemic andholistic approach to treatment that is tailored to the individual’s physical, psychological andspiritual needs.[119] As Dickinson stated, “Pain is a subjective sensation and therefore pain iswhat the individual says it is and not what others think it should be”.[120, p. 78]

Guidelines for a Palliative Approach in Residential Aged Care71

Dame Cicely Saunders first described the concept of ‘total pain’, articulating the view thatpain is not limited to physical distress but also includes psychological, social and spiritualelements.[121] Recognition of an emotional and psychological component to pain points to theneed for a multidimensional assessment for effective pain management.[122]Although the notion of total pain is accepted when using a palliative approach, this sectionof the Guidelines will focus on physical pain only. However, it is important to recognisethat pain in any of the domains (spiritual, social, etc) will impact on the other domains ofpain. Attention to these dimensions will be discussed further in the relevant sections of the
Guidelines (see Chapters 7, ‘Psychological support’, 9, ‘Social support, intimacy and sexuality’and 11, ‘Cultural issues’).

6.2.1

Incidence of pain in residents of RACFs

Studies have found that older persons may experience more pain than younger persons, yet areless likely to complain[123] (Level IV). Pain management in RACFs does not appear to be welladdressed. One US study found that nearly one-sixth of all residents in RACFs are in daily pain
and, when reviewed 60 to 180 days later, two-thirds were again reported to have been in daily
pain (either moderate or excruciating)[124] (Level IV). A further study found that residents over
85 years of age were more likely to receive no analgesia than younger residents[123] (Level IV).
A similar finding regarding pain was also found in an Australian study, which reported that
22% of residents who stated that they had pain had no medication administration recorded intheir case notes, and 16% did not have analgesics ordered[125] (Level QE).
One reason for this inattention to pain may be inadequate assessment tools, especially for thosewith advanced dementia who cannot articulate their care needs[91] (Level IV). Poor care practices
and difficulties with prescribing adequate and appropriate medication, especially in some ruraland remote regions, have also been cited as possible reasons for under-treatment of pain. However,there is evidence indicating that residents enrolled with a specialised palliative team have better
analgesic management of daily pain than residents who are not[126] (Level III-3).
The following story illustrates the benefits of a palliative approach to pain for a resident.

Vignette 6: Mr Johnson’s story
A month before his 100th birthday, Mr Johnson had fallen and fractured his hip. He
underwent surgery but became virtually chair-bound. Mr Johnson developed a pressurearea on his leg that quickly deteriorated, leading to a necrotic and heavily infected footwhich was extremely painful. He was well aware of his circumstances and, after being
advised of the treatment options available, decided that rather than amputation he would
prefer a palliative approach. This required a specific dressing management routine that
addressed the pain and the smell, together with a regulated pain management regimen
to give him comfort without sedation. Mr Johnson was able to participate in and enjoy his
centennial birthday celebrations.

72 		 Guidelines for a Palliative Approach in Residential Aged Care

6.2.2Barriers to effective pain management

The evidence suggests that lack of knowledge of pain assessment among some nurses[127] (Level
QE) and doctors[128] (Level EO) is contributing to poor pain management of residents. An
additional concern is the low level of knowledge of pain management of some doctors, as they
have had little formal education in this area.[129–131] The literature citing these deficiencies calls
for a collaborative approach between doctors and nurses to manage pain consistently and wellin the aged care setting[131] (Level QE). It also cites the need for educational programs that givedefinitive and objective information on drugs[128,129] (Level EO; Level EO). Some practices havebegun to change. These changes have included improved education of doctors and nurses aboutpain assessment and prescribing, development of more responsive assessment tools, improved
treatment strategies, and better practices for monitoring of residents’ pain levels.[130] However,other barriers to effective pain management still need to be addressed.
There is some evidence that difficulties may be encountered when members of the aged careteam lack the necessary skills for adequate reporting and also lack observation skills[90] (Level
QE). Accurate reporting based on good observation skills is particularly important for thoseresidents who do not articulate their pain symptoms verbally and rely on a skilled person toassess their level of pain based upon behavioural cues[132] (Level III-3).
Effective pain management may also be difficult for some residents due to their cultural beliefs.
For example, a recent study found that in some Indigenous Australian communities there wasconsiderable fear regarding morphine being given at the end of life[133] (Level QE). The common
belief was that morphine was the drug that was given to “get rid of me [them]”.[133, p. 146] This
study also noted that many Indigenous Australians had a fear of needles and did not understandabout drugs and palliative care. This study highlights the need to identify cultural issues for eachresident in all aspects of care delivery. (See also Chapters 10, ‘Aboriginal and Torres Strait Islander
Issues’ and 11, ‘Cultural issues’.)There is a large body of research demonstrating that some aged care team members may havemisconceptions or myths about pain management[128] (Level EO). These misconceptions canpresent major barriers to effective pain management. The following table provides an overview
of some of these myths, and the facts in each case.
Table 8: Common myths about pain management

Myths

Counter-Facts

1.

The best judge of whether a resident
has pain is the doctor or nurse caring
for the resident.

The resident is the authority on his or her pain. Their selfreport is the most reliable indicator of the existence andintensity of pain.

2.

Residents should not receive analgesics
until the cause of pain is diagnosed.

Symptomatic relief of pain should be provided whilst theinvestigation proceeds. Unrelieved pain is unacceptable andif ignored it can make it more difficult for adequate pain
control to be achieved. It is also important to remember thatthe clinician’s primary diagnostic tool is not pain.

3.

People with advanced dementia areunable to use pain-rating scales.

When an appropriate pain rating scale (e.g. 0–10) is used andthe person is given sufficient time to process and respond,
many cognitively impaired residents can use a pain rating
scale.

Guidelines for a Palliative Approach in Residential Aged Care73

Table 8: Common myths about pain management

Myths

Counter-Facts

4.

There is no reason for a resident to hurtwhen no physical cause for pain can be
determined.

As pain is a new science, not all aspects are understood.
Therefore it is better to accept that a resident is in pain,
given their authority on the matter.

5.

Clinicians should rely on their own
personal opinions and beliefs as towhether the resident is truthful todetermine the resident’s true pain status.

Personal beliefs are neither consistent nor adequate todetermine pain management. It is essential to establish theresident’s self-report of pain as the standard.

6.

Pain never killed anyone.

Chronic pain has many serious adverse effects such as
suppressing the immune system, which can lead to further
deterioration for the resident and may indeed hasten their
death.

7.

Pain relief should only be given for painthat is currently present.

It is better to give analgesics in anticipation of movement,
as this gives the resident control over the incident pain.

Adapted from McCaffery & Pasero (1999) [134]6.2.3

Types of pain

It is not always easy to distinguish between various types of pain; this difficulty tends toresult in omissions or overlaps in providing adequate pain relief. The literature related to pain
frequently refers to three types: acute pain (relatively brief that subsides as healing occurs),
cancer pain, and chronic non-malignant pain.[130] However, this typology has limited value inhelping direct the aged care team in assessing and managing pain. Instead, the method adopted
by the Therapeutic Guidelines: Palliative Care,[109] based on the inferred pathophysiology of thepain and classified into two broad groups, has been found to be most helpful and will be used.
(However, because much of the literature specifically refers to chronic pain, this term will also
be used in this section). The two broad groups are:• nociceptive pain (stimuli from somatic and visceral pain); and• neuropathic pain (results from an injury to the nervous system).
The following table provides examples of nociceptive and neuropathic pain types andrecommendations for referral.

74 		 Guidelines for a Palliative Approach in Residential Aged Care

Table 9: Pathophysiological classifications of pain, classification characteristics andexamples and recommendations for referral

Nociceptive— superficial
somatic

Nociceptive — deep
somatic

Nociceptive —visceral

Neuropathic

Origin ofstimulus• skin, subcutaneous
tissue• mucosa ofmouth, nose,
sinuses,urethra, anus

• bone, joints, muscles,
tendons, ligaments• superficial lymph
nodes• organs capsulesand mesothelial
membranes (pleuraand peritoneum)• solid or hollow
organs• deep tumourmasses• deep lymph nodes• damage to
nociceptive pathways

Examples• pressure
ulcers• stomatitis• arthritis, livercapsule distension or
inflammation• deep abdominal or
chest masses• intestinal, biliary,ureteric colic• tumour-related:brachial, lumbosacral
plexus or chest wallinvasion, spinal cord
compression• non-tumour-related:
post-herpetic
neuralgia, postthoracotomy
syndrome, phantom
pain

Description• hot• burning• stinging• dull aching• dull deep

• dysaesthesia, e.g.
pins and needles,
tingling, burning,
lancinating/ shooting• allodynia• phantom pain
• pain in numb area

Localisation(to site ofstimulus)• very welldefined• well defined• poorly defined• nerve or dermatome
distribution

Movement• no effect• worsening pain
(resident prefers to be
still)• may improve pain

• nerve traction
provokes pain, e.g.
sciatic stretch test

Referral

• no

• yes

• yes

• yes

Local
tenderness

• yes

• yes

• maybe• no

Autonomic
effects

• no

• no

• nausea, vomiting,sweating, bloodpressure and heart
rate changes• autonomic instability:
warmth, sweating,pallor, cold, cyanosis(localised to nerve
pathway).

This table is reproduced with permission from the Therapeutic Guidelines: Palliative Care (2001)[109, pp. 120–121]

Guidelines for a Palliative Approach in Residential Aged Care75

6.2.4

Breakthrough pain

The term ‘breakthrough pain’ (also known as ‘intermittent pain’) is generally associated withchronic cancer pain and specifically refers to when people with cancer who are already receiving
opioids have intermittent episodes of increased pain.[135] However, it is important to assess theoccurrence of intermittent pain in all individuals, not just those with a diagnosis of cancer.
The incidence of breakthrough pain has been found to vary between 40% and 80% amongindividuals in various settings[135] (Level EO). No tool has been developed that specificallyassesses the occurrence of breakthrough pain. However, use of a 24-hour assessment algorithm
may help to categorise breakthrough pain (see Figure 2 for an example).
Figure 2: Algorithm for treatment of breakthrough (episodic) pain [135]"REAKTHROUGH¬PAIN

9%3

3IGNIFICANT¬BASELINE¬PAIN

5SE¬7(/¬'UIDELINES!LLEVIATINGPRECIPITATINGFACTORS.EUROPATHIC¬PAIN

SHOOTING
BURNING

6ISCERAL¬PAIN

0AIN¬TYPE

COLICKY

0ATIENT¬EDUCATION
AND¬INFORMATIONINSUFFICIENT¬PAIN¬RELIEF./LANCATING

9%3

INCIDENT¬
PAIN
PAIN¬WITH¬
MOVEMENT

PAIN¬
WITH¬
CONTACT"ONEPERIOSTAL¬PAIN

3OFT¬TISSUE¬PAIN

CANCER, Vol. 94, No. 3, 2002, 832–839. © American Cancer Society.
Reprinted by permission of Wiley-Liss, Inc., a subsidiary of John Wiley & Sons, Inc.

76 		 Guidelines for a Palliative Approach in Residential Aged Care

Additional characteristics of breakthrough pain that should also be considered are:[134]• duration;• intensity;• quality, characteristics (e.g. aching, shooting);• precipitating factors (if any), such as bowel movement, change in the weather;• factors that relieve the pain;• sudden or slow onset;• occurrence in relation to time of analgesic doses; and• frequency (number of occurrences in past 24 hours).

6.2.5 Pain assessment tools
Horgas and Dunn (2001)[136] (Level QE) found that there was incongruence between nursing
assistants’ perception of pain and the resident’s self-report of pain in the majority of cases in apaired rating study. The results suggest that residents could be at risk of over or under treatmentof pain and therefore, pain assessment tools are recommended.
Pain assessment should include a history of the resident, including pain location, type,
frequency and severity as well as the impact on the resident’s daily life activities. One study
compared the simple question, “Do you have pain?” with three assessment tools (Visual
Assessment Scale, Behavior [Faces] Scale, Pain Descriptive Scale) and found that the assessment
tools were more accurate than simply asking the question about pain[137] (Level III-3). A rangeof pain assessment tools can be used, such as:• The Functional Pain Scale (FPS). The FPS is considered a reliable, valid, responsive andacceptable tool for use with older persons[138] (Level III-2).
• The Numerical Rating Scales (NRS). The NRS refers to all the possible combinations of pain
rating scales that use numbers, whether they are graphically or verbally presented and whether
they contain word anchors or not. However, usually these scales use a continuum from 0 to
10 where 0 signifies no pain and 10 signifies unbearable pain. The advantages of this tool arethat it circumvents the difficulties with language as with some assessment tools, is easy to use
and has a high degree of sensitivity[139] (Level IV). The disadvantage of this tool is that thehigher the cognitive impairment (MMSE score 0–9), the less likely that the resident will beable to complete the NRS[139](Level IV) Even with repeated explanation to residents with severe
cognitive impairment, the rate of successful completion of the NRS was still poor.[139]• The McGill Pain Questionnaire (MPQ). The MPQ is a multidimensional questionnairethat assesses the individual’s site of pain, sensory, affective and quality, changes over time,and intensity.[140] The criticisms of the questionnaire centre on the complexity and lengthof the questionnaire.
• The Brief Pain Inventory (BPI). The BPI has been used extensively in research due to its
reasonable validity and reliability; it has also proven useful in a variety of clinical settings,
including with people diagnosed with terminal cancer.[141] It takes about 15 minutes tocomplete and has been translated into Vietnamese, Chinese, Filipino and French.[134]

Guidelines for a Palliative Approach in Residential Aged Care77

Pain can lead to behavioural changes in residents. One study assessed residents with chronic
pain in RACFs to ascertain how easy it was for the aged care team to recognise the presenceof pain. There was disagreement between residents and their family members reporting on thetypes of behaviours that indicated pain. Pain-related behaviours of residents with advanced
dementia were more difficult to assess than those of residents without advanced dementia[90](Level QE) (see also Chapter 5, ‘Advanced dementia’). Given the difficulties associated withpain assessment for residents who are severely cognitively impaired, it may be more appropriate
to use a combination of pain assessment tools[142] (Level QE). The pain assessment scales forresidents with cognitive impairment or English-language or speech difficulties include:
Visual Analogue Scales (VAS). This is a horizontal 10cm line with word anchors at the extremes,such as ‘no pain’ on one end and ‘pain as bad as it could be’ on the other. The resident is asked
to mark on the line, the point that best represents their level of pain. The VAS can be relatively
easy to administer; however, scoring is time-consuming because the number indicated must be
measured in millimetres up to the point the resident indicated. The Mechanical VAS is a plastic
version of a VAS, with a sliding marker that the resident uses to move to correspond with theirpain level. Many older persons with advanced dementia have difficulty completing these typesof scale, so their use with this group is not recommended.
The FACES Scale. Several face-rating scales exist and were originally developed to determine
pain levels in children. The most widely used FACES scale is the one devised by WongBaker.[143] The scale has a number of faces drawn along a scale from 0 to 10, with 0 being ‘nohurt’ (and a smiley face), up to 10 that indicates ‘hurts worst’ (and a crying distressed face).
The scale has been translated into many languages, such as Chinese, German, Greek, Hebrew,
Italian, Korean, Japanese, Polish and Russian.[134] However, for people with moderate to severe
dementia completion rates are poor (55% of people with an MMSE of <19, and 41% for thosewith MMSE <11). Concern has also been expressed that the FACES scale may be a measure ofdepression rather than of pain for those with dementia, because it can be very difficult for older
persons who lack abstraction skills to translate reliably a crying face to severe pain instead of toa depressed or sad face. [134]Pain Descriptive Scales. Also known as the Verbal Rating Scale (VRS); this scale consists of a listof adjectives describing different levels of pain intensity, such as no pain, mild, moderate andsevere pain. A score of 0 to 3 is assigned to these words, thus the scale is easier for residents at
all levels of cognitive impairment to understand and score.[139]Abbey Pain Scale. This scale is a new Australian tool, specifically developed for people withadvanced dementia, as described earlier in this chapter[96] (Level IV).
Pain Assessment in Advanced Dementia (PAINAD) Scale. The PAINAD scale was developed
in response to the need for an easy-to-use, valid and reliable pain assessment tool in advanced
dementia. The PAINAD scale was based on the earlier DS-DAT protocol but was simplified,with a score of 0–10 for severity of pain making it more easily comparable to other pain scales
used in clinical practice.[95]78 		 Guidelines for a Palliative Approach in Residential Aged Care

6.2.6 Incident pain
Incident pain results from a specific event for an individual, such as being moved or woundcare. Therefore, incident pain is different to other types of pain and this difference needs to be
identified to ensure appropriate management of the resident’s pain. Appropriate management
is for analgesics to be given in anticipation of a resident’s movement to reduce the prevalence of
this type of pain occurring. For instance, when it is known that a resident is to be turned or tohave wound care, analgesics should be given prior to the event with sufficient time allowed toensure the analgesic has taken effect.

6.2.7 Management
Principles of pain management
Individualisation of the dose is the key principle of pain management[130] (Level EO). Some
members of the aged care team may be reluctant to increase doses in older persons[90] (Level
QE); however, dose increases can be undertaken safely when they are based on the resident’s
response in terms of their comfort and side effects rather than a preconceived idea of theamount of medication the resident might require[90,98] (Level QE; Level IV).
Research has shown that many older persons have become resigned to their pain, are reluctant
to complain, and are ambivalent about the benefit of any intervention to control it[90](Level QE). As older persons are often reluctant to ask for pain medication, and if opioids
are prescribed, they should be administered around the clock if pain is present most of theday. Continuous administration also avoids the toxicity associated with the high peak effect(toxicity) typical of PRN (as needed) doses.[130] Dosing PRN is only appropriate when pain isintermittent. In such cases, pain requires regular assessment and offering of analgesics.[98,144](Level IV; Level EO)
A further principle of pain management is the need to fully assess the probable cause of pain,
because many people have more than one pain and different types of pain have different causes.
The evidence suggests that comprehensive assessment of pain and evidenced-based analgesic
decision-making processes enhance pain management[145] (Level II), as illustrated in thefollowing story.

Guidelines for a Palliative Approach in Residential Aged Care79

Vignette 7: Mrs Harris’ story
Mrs Harris is an 82-year-old who has been an RACF resident for the past eight months.
A review of her medical history indicated she had rheumatoid arthritis, which left her withsignificant hand and wrist deformities and considerable pain associated with movement
during the day. She also suffered considerably from the pain associated with morning
stiffness. Additionally, her medical history indicated that she had osteoporosis, particularly
in her spine.
Mrs Harris’s health was otherwise remarkably good, except for a progressive short-term
memory loss, which meant that she could no longer live at home. She woke one morningwith severe pain that rendered her bed-bound. She needed assistance with all activities ofdaily living. An xray of her spine showed that she had suffered from further spinal damage.
The neurological examination did not reveal any new weakness or sensory change. She
was already on regular paracetamol and a low dose of regular Indocid. Her GP chose tocommence her on 10mg of sustained-release morphine morning and evening to try andimprove her analgesia, and at the same time introduced Coloxyl with Senna regularly. After
three days Mrs Harris was more comfortable but still not totally pain free. Her evening
dose of sustained-release morphine was increased to 20mg and within another 48 hours
she was comfortable and back to her previous level of function. She was not drowsy andshowed no other symptoms as a result of the careful introduction of opioids.
Within two months, Mrs Harris was moving comfortably and her GP decreased her opioidsby 10mg every three days until they were no longer required.

Pharmacological management
The Australian Medicines Handbook (2002)[146] and its companion the Australian Medicines
Handbook Drug Choice Companion: Aged Care (2003)[147] outline information on analgesics forpain management of chronic and acute pain, with drug information on opioid, non-opioid andcompound analgesics and other drugs used for pain management. An electronic version of theseresources is available on the Internet for medical practitioners at www.amh.hcn.net.au.
Consistent throughout the pain literature is the recommendation that the choice of medicationneeds to be based on the severity of the pain and not the stage of disease. The WHO Analgesic
Ladder (1996)[148] recommends a three-step approach for pharmaceutical treatment of mild,moderate and severe pain (as shown in Figure 3). The use of the WHO ladder in addition tocareful dose titration will expedite the choice of an appropriate drug in a timely and responsive
manner [149] (Level III-3).

80 		 Guidelines for a Palliative Approach in Residential Aged Care

Figure 3: The WHO analgesic ladder for pharmaceutical treatment of pain [148]0AIN¬UNDER¬CONTROL
3TRONG¬PAINSTRONG¬OPIOIDS¬FOR¬MODERATE¬TO¬SEVERE¬PAIN ¬NON OPIOID¬ADJUVANT)NCREASE¬IN¬PAIN-ODERATE¬PAINWEAK¬OPIOIDS¬FOR¬MILD¬TO¬MODERATE¬PAIN ¬NON OPIOID¬ADJUVANT)NCREASE¬IN¬PAIN-ILD¬PAINNON OPIOID¬ADJUVANT

It is recommended that drugs be administered in standard dose at regular intervals in a stepwise
fashion. If a non-opioid or a weak non-opioid is insufficient, a strong opioid should be used.
Either a strong or weak opioid should be used, but not both. Adjuvants may be added at any
stage, as their primary indication will be for other painful conditions (e.g. corticosteroids, nonsteroidal anti-inflammatory drugs, tricyclic antidepressants, anticonvulsants and antiarrhythmic
drugs). Tricyclic antidepressants in optimal doses appear to be the most efficient treatment forneuropathic pain, but other treatments may be better tolerated by this population[150] (Level I).
A trial period is required to review medications, doses, use patterns, efficacy, and side effects.
This review should occur on a regular basis: Medications that do not appear beneficial should
be tapered and discontinued.

Analgesic medications
The use of simple oral non-opioid analgesics such as paracetamol (acetaminophen) and nonsteroidal anti-inflammatory drugs (NSAIDs) is an appropriate starting point for responding topain based upon the WHO ladder approach [149] (Level III-3). However, several studies havefound that residents who report pain have inadequate or irregular mild analgesics recorded[125,151] (Level QE; Level QE). Non-opioid analgesics, particularly paracetamol, are considered
to be the first choice for responding to mild to moderate pain, because they are relatively
safe in older persons[128,152] (Level EO; Level IV). Concerns that paracetamol accumulated
during multiple dosing were not supported in a small study of poly-medicated older persons
where a dose regimen of acetaminophen 1 g three times daily was undertaken [152] (Level IV).
(The recommended therapeutic dosage of paracetamol is 3–4 g daily for adults.) There are nocommon side effects associated with the use of paracetamol within therapeutic ranges. However,higher dosages of paracetamol can lead to an increase in the risk of toxicity[128] (Level EO).
Combining paracetamol with other drug types such as mild opioids (codeine, tramadol [WHOstep II]) or strong opioids (morphine [WHO Step III]) is another approach to ensuring that
analgesics remain effective in all three steps of the WHO ladder.[149] One Australian RCT

Guidelines for a Palliative Approach in Residential Aged Care81

examined the addition of paracetamol for people with advanced cancer who were alreadyreceiving a oral morphine regimen[153]. The authors’ concluded that paracetamol improved pain
and well-being for the majority of the participants without the incidence of significant adverse
reactions[153] (Level II). Further studies with older people are required to determine that thisfinding is appropriate for people without a diagnosis of cancer.

NSAIDsNSAIDs are often used when other non-opioid analgesics are not sufficient for pain
management; for example with older persons who have rheumatoid arthritis or osteoarthritis[154,155] (Level I; Level I). A recent systematic review of the use of NSAIDs in combination
with an opioid was found to be effective in managing cancer pain, with side effects equivalent
to placebo [156] (Level I). A systematic review of paracetamol versus NSAIDs for rheumatoid
arthritis found that the participants preferred NSAIDs more than paracetamol for pain
management [155] (Level I). However, NSAIDs have the potential for more adverse side effects
than paracetamol does, such as gastrointestinal events, headaches, and renal, cardiac and hepatic
impairment.[155] These agents are associated with greater toxicity for older people. Therefore,
the benefits and harms of NSAIDs should be given careful consideration when determining
whether NSAIDs or paracetamol are more appropriate for each resident [154] (Level I). Further
RCTs are required to determine which NSAIDs are appropriate for use with older people andwhich NSAID is the safest and most appropriate.

Misconceptions regarding opioid use
Pargeon and Hailey (1999)[157] outline the many misconceptions regarding the use of opioids
in the minds of doctors, nurses, family members and others. According to the WHO guidelines
on pain management, opioids are the medications of choice for the management of moderate
to severe pain.[148] This group of medications is effective and easily titrated, and has risks
that are easily managed. For most people receiving a palliative approach, morphine is theopioid analgesic of choice[158] (Level EO). However, a number of myths abound regarding
use of opioids, particularly their use with older persons. This results in limits to effective pain
management. Examples of some of these myths and their counter evidence are provided in thefollowing table.

82 		 Guidelines for a Palliative Approach in Residential Aged Care

Table 10: Common myths regarding the use of opioids

Myth

Fact

Opioids create addiction

Physical dependence and tolerance may occur, addiction(psychological dependence) is rare and almost never occurs in an
individual without a history of drug use prior to their illness.[56]Opioids cause respiratory depression

If respiratory depression occurs, it is usually in opioid-naive
individuals following acute administration of an opioid and isassociated with other signs of central nervous system depression (e.g.
sedation). Reduction in dose or temporary withdrawal of the opioid is
usually all that is required.[159]Clinically important respiratory depression is a very rare effect in
the individual whose opioid dose has been titrated against pain.[159]A study demonstrated that, in a population of terminally ill cancer
people with respiratory failure and dyspnoea, administration of
subcutaneous morphine actually improved dyspnoea without causing
a significant deterioration in respiratory function[160] (Level II).

Opioids must not be used too earlyin an illness to avoid hitting a‘Ceiling dose’.

There is no ceiling to the analgesic effects of full agonist opioids.[161]As the dose is raised, analgesic effects increase as a log linear
function. In practice, the appearance of adverse effects imposes limits
on the useful dose of an opioid agonist.

Opioids hasten death and shouldn’t
be used with older persons.

Titrate dose carefully. The older person is more at risk due to greater
sensitivity to doses of opioids than for younger people but this does
not mean that they shouldn’t receive opioids.[161]As with any medication, opioids have side effects that with careful planning can be prevented orrelieved. Side effects related to use of opioids include:[161]• constipation (most common);• nausea and vomiting (occurs initially and is usually easily controlled);• daytime drowsiness and mental cloudiness (usually resolves within days);• dry mouth;• urinary retention (more common in older people);• multifocal myoclonus (can be dose related, can be treated or an alternate opioid used);• dizziness (usually resolves within days);• dysphoria;• confusion and hallucinations (rare but may occur in older persons); and• sleep disturbances.

Organisational issues regarding pain management
The policies and procedures of each RACF regarding administration and use of opioids need
to be readily accessible. The policies should specify who can administer opioids, where opioids
are located, and how they are to be stored. High-care facilities are legislated with regard to their

Guidelines for a Palliative Approach in Residential Aged Care83

provision and storage of drugs, whereas low-care facilities are internally controlled. Despite
different State and Territory legislation on the prescribing and administering of medication,adequate pain management should not be affected. It is important not to leave any resident in
pain, and appropriate analgesics should be available in a timely fashion. For further guidancerefer to the legislation in each State or Territory.
GPs and nurses working in RACFs need to understand the principles of titrating doses,
conversions, and differences in dosages — when the route of administration is changed fromoral to subcutaneous, for example. For further information and greater detail the Therapeutic
Guidelines: Palliative Care[109] is recommended.

Non-pharmacological pain management
A systematic review of the literature on pain found that the identification of non-opioid
pain receptors and the development of products to target them are just two of the changes
that have altered the way clinicians think about treating pain[128] (Level EO). A simple
technique, such as the use of temperature (cold and warm), is an effective alternative therapy
that is often overlooked. For example, cold can be used to suppress the release of products
from tissue damage and warmth can stimulate production of endogenous opioids. Anothersystematic review into transcutaneous electrical nerve stimulation (TENS) for chronic pain
examined 19 RCTs and concluded that the results for the benefits of TENS with chronic pain
were inconclusive[162] (Level I). This was mainly due to the published trials not providing
information on the stimulation parameters, nor answering questions regarding the long-term
effectiveness of TENS for chronic pain.
A systematic review examined whether progressive resistance strength training for physicaldisability in older persons was beneficial[163] (Level II). The reviewers concluded that thistraining increased muscle strength and had a positive effect on some functional limitations inolder persons. They also concluded that older persons with pain from osteoarthritis appeared tobenefit from this training. Despite the strength of the research regarding progressive resistancetraining, this approach might not be suitable for residents who require a palliative approach due
to co-morbidities, particularly dementia. Therefore, further research is required.
Guideline:

Pain Management
Ref No.

Evidence
level

18.

A comprehensive assessment of the resident’s pain and the use ofevidence-based analgesic decision-making provide enhanced pain
management, thereby improving the resident’s quality of life.

145

II

19.

For residents unable to verbalise their pain, accurate reporting based on
observations by a skilled person using behavioural cues is particularly
important in determining pain. The use of appropriate assessment
tools will increase the frequency with which pain is diagnosed whencompared with asking the resident “Do you have pain?”

137

III-3

84 		 Guidelines for a Palliative Approach in Residential Aged Care

6.3 FATIGUE
Fatigue is defined as a sense of exhaustion, a loss of strength or endurance, or a sense ofweariness or tiredness that is not due to exertion and is not relieved by rest.[164] Fatigue isrecognised as a multi-factorial symptom, with complex pathology, that may occur alone or in
combination with other symptom complexes[165,166] (Level EO: Level IV). Fatigue is the mostfrequently cited physical concern reported by individuals approaching death.[165,167] However,fatigue should not be accepted as ‘normal’ or untreatable, especially in residents. Fatigue has
been found to have physical, emotional and cognitive components in both individuals withcancer and in healthy individuals[168] (Level QE). There is some evidence to indicate that
although many residents may experience fatigue, the symptoms may be poorly recognisedand consequently under-treated[164] (Level IV). Fatigue is best understood in terms of a senseof wellbeing, level of activity, and level of weakness. It can be part of the anorexia-cachexia
syndrome, and/or it can be related to boredom, medical problems, pain, psychologicalproblems, sleep disturbances and medications.[164] However, while no clear leading cause isevident, fatigue has consistently been associated with depression and anxiety[167,169] (Level EO;
Level IV). Fatigue may also be associated with pain, a reduction in intermediate activities ofdaily living, number of medications, and physical function[164] (Level IV).

6.3.1 Assessment
The assessment of fatigue is usually based on the resident’s report of the symptom. People
generally do not consider tiredness and fatigue to mean the same thing; hence, it is unlikely thatthe incidence of fatigue will be over-reported[170] (Level QE). Some residents may voluntarily
report fatigue, but often it remains unrecognised unless the aged care team specifically asks theresident or observes changes in them. Under-reporting of fatigue is presumed to occur because
residents may be reluctant to mention fatigue, believing that it is to be expected at their age.[164]They may also feel that their complaint of fatigue is not important enough to report. No figurescurrently exist regarding the number of Australian residents who report that they have fatigue;
however, a US study found that during the period of the study (median 44 weeks duration),
98% of residents’ self-reported feeling fatigued[164] (Level IV). The potentially high incidenceof fatigue and its negative impact on individuals, such as interfering with their ability to makeend-of-life plans and decisions, and decreasing their quality of life, suggests that fatigue needs tobe assessed and addressed by a multidisciplinary team.
A number of tools to assess fatigue have been developed, though few have been tested for use
with older persons. One exception is the Piper Fatigue Scale (1987),[171] which was originallydeveloped for patients with cancer and subsequently has been revised[166] (Level IV). This
self-report tool is based on the concept that fatigue is a multi-component sensation withbehavioural (interference with activities of daily living), affective meaning (how fatigue isperceived), sensory (feelings associated with fatigue) and cognitive (mood, memory and thoughtprocesses) aspects. Therefore, the Revised Piper Fatigue Scale (1998)[166] (Level IV) consists of
22 items that measure these four dimensions of fatigue: behavioural / severity(6 items), affective meaning (5 items), sensory (5 items) and cognitive / mood (6 items). Each
item is scored 0 to 10 on Likert Scales. A total score, which was standardised to a 0 to 100
scale with 100 being the most fatigue, is obtained by adding the item scores. The scale has been

Guidelines for a Palliative Approach in Residential Aged Care85

successfully tested predominantly with people with cancer in the US, China, and Taiwan and its
validity and reliability were also supported when the Revised Piper Fatigue Scale (1998)[166] wasused with 199 older persons (M age = 88 years) living in a RACF[164] (Level IV).

6.3.2 Management
To enable realistic goals for the management of fatigue to be achieved in accordance with thewishes of the resident and their family, the aged care team should initiate a discussion withthose concerned. The first step is to assess the resident and identify any other symptoms,
diseases or circumstances that may contribute to fatigue[164] (Level IV). For example, depression
and anxiety, insomnia, anorexia, pain, dehydration, and anaemia may respond to treatment,
which can improve the level of energy available.

Pharmacological management
No RCTs have been conducted to date that specifically address pharmacological interventions
for fatigue in older persons.[165]Non-pharmacological management
Suggested non-pharmacological methods for relieving fatigue, such as exercise programs andenergy conservation, may be effective for people receiving a palliative approach[169] (Level IV).
Winningham and colleagues (1994)[167] (Level EO) in a review of the literature regarding
fatigue and cancer, found that if people are tired it is often a result of inactivity. Guidelines on
fatigue management for people with advanced cancer have been developed[172] (Level QE) and,
although these guidelines have not been tested in the aged care setting, they might offer some
useful direction for managing this difficult symptom in the aged care population.
Systematic reviews were conducted to examine the benefits of physical exercise [173](Level II),and cognitive behavioural interventions[174] (Level I) for sleep disturbances in adults aged over
60 years. Physical exercise was found to provide some benefits such as facilitating sleep andimproving quality of life; however, the trials had small numbers and reviewers cautioned thatexercise was not appropriate for all older persons.[173]
Cognitive behavioural therapy (CBT) was found to have a mild effect on sleep disturbances inolder persons, but the effect was not usually long-lasting (<2 months)[174] (Level I). However,
the reviewers’ expressed concern regarding reduced efficacy of this therapy for those aged 80
years and older. Additionally, because fatigue may have many causes among older persons,such as anxiety and depression, it is not clear that treating one cause in isolation, such as sleep
disturbance, results in a reduction of fatigue. However, the reviewers’ concluded that, given
the potential side-effects of pharmacological interventions such as hypnotics that there wasan argument to be made for the use of CBT in preference to pharmacological interventions,particularly for those people who were younger than 80 years of age. Given that the average
Australian resident is aged over 80 years and has a diagnosis of advanced dementia, it issuggested that further research is required prior to the implementation of CBT interventions.
One recent study considered the use of acupressure with 106 people (average age = 58) who hada diagnosis of end-stage renal disease. The researchers found that participants in the acupressure86 		 Guidelines for a Palliative Approach in Residential Aged Caregroup (n = 35; received acupressure 3 x weekly for 4 weeks plus usual care) had significantly
lower levels of fatigue (as measured by the Revised Piper Fatigue Scale [1998]) than the control
group (n = 36, received usual care)[175] (Level III-1). Interestingly, there were no significant
differences between the acupressure group and the sham group (n = 35; received shamacupressure [massage with no acupoints] 3 x weekly for 4 weeks plus usual care), with boththese groups having decreased fatigue levels post-intervention. These findings appear promising;
however, further studies are required with significantly older participants to determine theappropriateness of this therapy.
Guideline:
20.

Fatigue

Fatigue is the most frequently reported physical concern by
individuals nearing death. Therefore, careful assessment isrequired of factors that may indicate or bring about fatigue (e.g.
depression, anxiety, pain, a reduction in intermediate activities
of daily living, and number of medications), which will enhanceearly identification and management of fatigue.

Ref No.

Evidence level

164

IV

170

QE

6.4 NUTRITION AND HYDRATION
Nutritional and hydration issues for residents receiving a palliative approach are complex andraise ethical questions for the aged care team, residents and family members (see Chapter 4,‘Advance care planning’). A palliative approach endeavours to address these issues in the light ofthe best available evidence.
Nutrition and hydration are associated with more than physiological need. There are many
psychosocial, cultural and symbolic meanings that influence the reasons for poor nutritional
status [176] (Level II). For example, the sharing of meals is usually associated with social
gathering, communication and life time habits such as when, where and how we eat[177] (Level
EO). Therefore, if residents are unable to eat or share a meal or drink with others the experienceof meal times can be extremely unpleasant and can contribute to refusal to eat. Refusal toeat or drink can also occur when a resident does not like the food or fluid being offered (i.e.,therapeutic diets often lack taste[178]), needs assistance or extra time to eat,[179] or when the foodor fluid is inappropriate to the resident’s cultural background.[177]6.4.1 Nutrition
There is no agreement regarding the definition for malnutrition or under-nutrition (either term
can be used)[176] (Level II). However, it is generally accepted that malnutrition is “… a state ofenergy, protein or other specific nutrient deficiency that produces a measurable change in bodyfunction and is associated with worse outcome from illness as well as being specifically reversed
by nutritional support”.[180, p. 590] Malnutrition is a medical condition determined by chemical
tests and is usually treated by medical intervention. Thus, it should not be confused withhunger, which is not considered a medical condition. The most common nutritional problems
for residents in RACFs are weight loss and associated protein energy malnutrition[176] (Level II).

Guidelines for a Palliative Approach in Residential Aged Care

87

The reasons for malnutrition in older persons are multi-faceted and can even be associatedwith the process of ageing, which affects food intake and body weight and can be intensified
by illness or disease[176] (Level II). Depression and adverse medication side effects are the mostcommon treatable causes of malnutrition.[181] Given the prevalence of depression for residentsof RACFs and the high medication rates, these factors warrants specific attention[181] (Level
IV). Advanced dementia, apathy, fatigue, and late-life paranoia (e.g. where the resident believes
that he / she is being poisoned via food or fluid intake) are other potential factors involved inpoor nutritional and hydration status of older persons.[176] There are also specific issues relating
to eating, feeding and nutrition for those with particular diseases or diagnoses. For example,
Kumlien and Axelsson (2002) [182] (Level QE) reported that a quarter of stroke patients sufferedfrom dysphagia and 30% had poor food intake and poor appetite. Older persons who have had
a hip fracture tend to have a poor nutritional status, as do residents with COPD or Parkinson’s
Disease[183,184] (Level EO; Level III-3).
The traditional practice associated with a palliative approach is that when interest in food andfluid becomes minimal the individual should not be forced to receive them.[185] Indeed, eating
and drinking may no longer be relevant to the resident who has already withdrawn and whose
attention is now more inward.[186] For example, a study of 32 individuals receiving a palliative
approach explored whether the provision of limited food and fluids (only in response to arequest from the individual) would have an adverse effect on quality of life[185] (Level IV). The
results indicated that 60% (n = 20) reported that they never experienced any hunger or thirstand that most (n = 27) remained ‘comfortable’ requiring only sips of water.
The difficulties the aged care team experiences are often due to different views on basic humanrights and whether interventions to maintain hydration and nutrition are inappropriate
active medical interventions instead of a palliative approach[185] (Level IV). Family members
may request that everything possible be done for their relative, including treatments that areconsidered by care providers as invasive or potentially burdensome, contributing to increased
suffering and discomfort for the resident.[185] The aged care team needs to be able to initiate
discussions with residents and their families about the pros and cons of artificial feeding andhydration[187,188] (Level EO; Level EO). Additionally, the aged care team needs to be awarethat the family may require support when they are faced with making such decisions on theirrelative’s behalf[185] (Level IV).
Adequate discussion with the resident and their family regarding nutritional and hydrationneeds may help to alleviate the psychological and social distress often experienced. The agedcare team member assisting with feeding should be seated at eye-level with the resident and taketime to establish and maintain a relationship with the resident to create an atmosphere that is
conducive to relaxing the resident. This approach to feeding enhances the resident’s nutritional
intake and improves his / her social well-being[104] (Level III-1).
Nonetheless, many people who are dying often receive intravenous fluids when they are nolonger able to maintain a normal fluid balance.[189] The main reason for this appears to bea belief that dehydration in a person close to death is distressing. However, professionals
providing a palliative approach generally consider that artificial nutrition and hydration may be
detrimental.[185,186,189,190]

88 		 Guidelines for a Palliative Approach in Residential Aged CareOne study surveyed 102 nurses regarding their beliefs as to why some individuals that they
had cared for, who were receiving a palliative approach chose to stop eating and drinking[191](Level QE). The nurses reported that some people, particularly older persons, refused foodand fluids because they were ready to die, no longer found meaning in living, and consideredthat their quality of life was poor. The average time of death from when food and fluids wereceased was 15 days.
Careful attention to the nutritional intake of residents in RACFs is both a clinical issue and aquality-of-life issue.

Assessment
Recognising the varied risk factors for poor nutritional status in RACF residents is the key
to successful assessment and management strategies[187] (Level EO). Therefore, an assessmentof potential causes should be made with a view to identifying malnutrition and reversing thecauses[187] (Level EO).
Morley and Silver (1995)[187] developed a mnemonic called “MEALS ON WHEELS” to assist
aged care team members in identifying reversible causes of malnutrition in RACF residents.
With some adaptation to the Australian RACF context (see following table), this mnemonic
may be appropriate for aged care team members to consider a multi-factorial approach toresidents’ poor nutrition.
Table 11: MEALS ON WHEELS: Treatable causes of malnutrition in RACF residents[187]Medication
Emotional problems (depression)
Anorexia tardive (nervosa); Alcoholism
Late-life paranoia
Swallowing disorders
Oral factors
Not culturally appropriate (the food; the presentation; the environment)
Wandering and other dementia-related behaviours
Hyperthyroidism, hyperparathyroidism, hypoadrenalism
Enteric problems (malabsorption)
Eating problems (resident’s inability to feed independently; tremors resulting in spillage)
Low-salt, low-cholesterol diets (therapeutic diets)
Socially inappropriate (the food; the environment; lack of interaction; inappropriate positioning of resident)

Metabolic disorders such as hyperthyroidism are often overlooked when attempting todetermine the cause for weight loss. Detection of such conditions involves determining theindividual’s serum albumin, with decreases being a potentially positive indicator.[187] Other
reversible causes that are often not considered include chronic infections, alcoholism (nutrientmalabsorption or reduced nutritional intake), oral health factors, and the use of therapeutic
diets (e.g. low salt, low-cholesterol diets; see Glossary for definition).[178,192]

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89

The diets of residents should also be considered as potential causes for nutritional problems.
Studies have shown that weight loss, low albumin levels and postural changes (orthostatism)are associated with therapeutic diets[178] (Level QE) and therefore these diets should be avoided
whenever possible for RACF residents. Low blood levels for a variety of vitamins have beenfound in many residents in RACFs[187] (Level EO). Low levels of Vitamins B1, B2 and C
have been associated with cognitive dysfunction. Supplementation of thiamine has improved
cognitive function for older persons in RACFs with vitamin deficiencies[187] (Level EO).
Assessment of blood levels for these vitamins in residents is warranted because the treatmentof these deficiencies is not aggressive and the potential benefits, such as increased cognitive
function, are worthwhile.
There are many nutritional assessment tools available for use with older persons; however,most of these tools have not been validated and generally explore only the physiologicalfactors associated with malnutrition such as the Body Mass Index (weight in kg/[height inm]2), triceps skin fold thickness and arm muscle circumference (measures of anthropometry),and history of recent weight loss[176] (Level II). One tool that has been validated for use fornutritional screening of RACF residents and which does not require laboratory tests is the
Mini-Nutritional Assessment (MNA).[193] Further testing of this tool is required to determine
whether it is appropriate for use with residents requiring a palliative approach.

Pharmacological management
Oral nutrition via a diligent hand-feeding program, rather than nasogastric enteral feeds, isbest practice management for older persons[176] (Level II) and for those receiving a palliative
approach;[194] however, a thorough assessment for dysphagia should first be undertaken[104](Level III-1). The preferences of the resident should guide the dietary selection and theamount of nourishment[195] (Level IV). A multidisciplinary team is helpful in encouraging oral
nutrition. For example, the aged care team and family members can provide information on theresident’s likes and dislikes, lifelong food habits, and identification of swallowing problems[187](Level EO). A dietician, in collaboration with other relevant members of the aged care team,
can then plan meals in accordance with the resident’s cultural diversity, preferences andswallowing ability.
Evidence supporting the effectiveness of nutritional supplementation exists for oral protein
and energy feeds, but the reviewers considered that the strength of this evidence was weak[196](Level II). However, not all residents are willing or able to consume oral nutrition or nutritional
supplements. Therefore, efforts to encourage residents to eat for comfort and enjoyment and toprovide assistance with feeding, if required, is considered best practice[185,194] (Level IV; Level EO).
Enteral feeding to prevent the development of severe protein energy malnutrition is advocatedproviding it is used early in the management of a resident’s nutrition[187] (Level EO). A recent
systemic review examined the evidence from 31 RCT and quasi-RCT studies for improvementin the nutritional status and clinical outcomes when protein and energy food were used(generally in the form of commercial ‘sip-feeds’)[176] (Level II). The reviewers concluded
that supplementation appeared to produce a small but consistent gain and that there was asignificant effect on mortality. However, the reviewers tempered their conclusion by cautioningthat the time scales of most studies were too short to detect realistically differences in morbidity,

90 		 Guidelines for a Palliative Approach in Residential Aged Carefunctional status and quality of life. They also stated that the challenges faced by medical
practitioners to fulfil individual needs and preferences, both organisational and practical,
were not considered by any of the studies. Therefore, the gathering of additional data wasrecommended based upon large-scale multi-centre trials to clarify any perceived benefits fromprotein and energy supplements on mortality rates.
Another systematic review examined the benefits of protein energy supplementation in adults(predominantly aged 70+), which included studies of oral supplementation, modification offood constituents to increase energy density, and studies of enteral feeding[197] (Level II). The
reviewers concluded that weight and nutritional indices of adults might be improved by routine
nutritional supplementation. However, no reduction in mortality was found for nutritional
supplementation. The reviewers also noted that there remain uncertainties as to whether
supplements routinely provided can improve outcomes, particularly over longer periods of time.
Neither of the systematic reviews considered a palliative approach as a variable, so the results
may not be transferable to the aged care population. Further research is required.
Individuals with advanced dementia who have difficulty eating or swallowing are often given
enteral feeding to prevent aspiration pneumonia, ulcers or malnutrition.[195] However, there is noevidence that tube feeding makes a resident with advanced dementia more comfortable, provides
any benefit (including longer survival), or prevents aspiration pneumonia[195] (Level IV). Several
studies have found that tube feeding is a risk factor for pneumonia and morbidity[195] (Level IV).
Concern exists that enteral and parenteral nutrition therapies are too aggressive and, therefore, do
not fit within the philosophy of a palliative approach[185,187,190,198,199] (Level IV; Level EO; Level
QE; Level EO; Level EO).

Tube feeding
Continuing percutaneous endoscopic gastrostomy (PEG) feeding when death is imminent
may actually cause discomfort due to the body’s limited capacity to tolerate such intake at thistime[190,199] (Level QE; Level EO). If the resident has been receiving sustenance via a PEG tube
then reviewing the benefits of this treatment should be discussed with the resident’s doctor[190](Level QE).
In making an informed decision about tube feeding, the resident’s best interest andpreferences are the cornerstone. When residents cannot speak for themselves, it is best togather as much information as possible from those who have known them best such as family
members. This proxy approach to decision making does not ensure that the interests of thevulnerable resident are guaranteed, but it does reduce the likelihood that the values of one
individual will dominate.
Often the dilemma that families face concerns regarding when to discontinue PEG feeds
once they have begun[187,199] (Level EO; Level EO). Having family members involved in thedecision making process to pre-empt such concerns of the family members by recording what
interventions they consider that the resident would prefer. Everyone involved in the decisionmaking process needs to be aware that withholding or withdrawing treatments is legally andethically sound if the decision is to be based on fully informed consent.[185,188]

Guidelines for a Palliative Approach in Residential Aged Care91

To assist in such a discussion, a decision aid has been devised (see table below) that can beused for family members of residents that are cognitively impaired and for those residents whoare cognitively intact and / or their family members[188] (Level EO). The aim of this aid is tohelp residents and their families decide whether to pursue tube feeding. There are three basic
components: (1) information on options and outcomes; (2) steps to decision making that are
based on the resident’s preferences, personal values and clinical situation; and (3) a documented
treatment plan designed to put these steps into operation[188] (Level EO).
Table 12: Tube feeding decision aid [188]Information to be provided to theresident and family should include:

Steps to decision making
should include:• Common causes of eating andswallowing problems in older persons:• Guiding the resident and their family through what they
have learned about PEG tubes:• Technical considerations regarding theplacement and use of PEG tubes:• How to apply this knowledge to the resident’s
preferences, personal values, and clinical situation:• Principles of substitute / proxy decision
making (if not already discussed):• What is the resident’s situation?

• The risks and benefits of tube feeding:• What would the resident want?

• The option of supportive / comfort
care (e.g. hand feeding; responsive toresident’s requests regarding the need for,or the refusal of, food and fluids); and• How is the decision affecting the family?

• Some considerations regarding future
discontinuation of PEG tube (e.g. whenand how often will the need for the PEG
tube be reviewed; who can request areview / discontinuation and is there a
process for this).

• What questions need answering before the resident / ortheir family can make a fully informed decision?
• Who should decide about PEG placement?
• When should the PEG be disbanded; and• What is the resident’s / or his / her family’s overall
thoughts about the decision?

Non-pharmacological management
Numerous nutritional benefits have been noted when frail residents have been involved in a
simple exercise program such as walking; for example, enhanced appetite, improved protein
intake, improved bowel function (decreased constipation), and a decreased likelihood of glucose
intolerance [187] (Level EO). However, some caution should be observed, because the populationthat was studied was not receiving a palliative approach to their care.
The use of more expensive programs, such as high-intensity or endurance (strength-building),with frail residents is not recommended, due to a lack of significant beneficial results forparticipants involved in studies of these programs[200] (Level II).

92 		 Guidelines for a Palliative Approach in Residential Aged Care

Guideline:

Nutrition
Ref No.

Evidence
level

21.

22.

23.

Good nutritional care requires an individualised approach that includes
early recognition of weight loss and the identification and managementof likely causes (e.g. adverse medication effects, poor oral health ordepression). This careful attention to assessment and management ofresidents’ nutritional requirements improves quality of life.
Giving residents oral foods and fluid, even in small amounts, ispreferable to using more invasive enteral (e.g. nasogastric or PEG)
feeding methods. However, a dysphagia assessment is essential toprovide direction for oral feeding.
The aged care team member assisting with feeding should be seated at
eye-level with the resident and take time to establish and maintain arelationship with the resident to create an atmosphere that is conducive
to relaxing the resident. This approach to feeding enhances the resident’s
nutritional intake and improves his / her social well-being.

176

II

181

IV

176 104

II
III-1

104

III-1

6.4.2 Hydration
Dehydration is the loss of normal body water. It is a medical condition determined by chemical
tests and is usually treated by medical procedures. Dehydration should not be confused withthirst. Thirst can be treated without medical intervention and generally does not respond to
medical treatments. Instead, thirst is best treated by small amounts of fluid or ice chips (finely
crushed) and careful attention to keeping the resident’s mouth and lips moist[185] (Level IV)(See Section 6.9, ‘Mouth care’).
One study found no statistically significant relationship between the level of hydration of thepatient and symptoms such as feeling thirsty and having a dry mouth [201] (Level QE). The
authors suggested that artificial hydration may therefore be pointless in people with end-stage
disease whose bodies are shutting down.
A systematic review of the evidence for maintaining oral hydration in older people found that
there was insufficient evidence to determine the risk factors for dehydration and decreased fluids
or the optimum amount of oral fluids. More research is required to determine the optimum, noninvasive method of maintaining adequate hydration in older people[202] (Level II).

Assessment
Dehydration has a variety of clinical signs, including dry skin and mucous membranes,
thickened secretions, decreased urine output, postural hypotension, headaches, cramps,
irritability, drowsiness, constipation, weight loss, disorientation and orthostatic hypotension(changes in blood pressure due to postural change).[201] Many of these clinical signs occur forother reasons, such as medication side effects, prolonged bed rest, mouth breathing and the useof oral supplements[203] (Level QE). However, if several of these signs appear together or are
different from the resident’s usual presentation, dehydration may be the cause. Additionally,
when assessing the resident, the aged care team should be aware that clinical signs might not

Guidelines for a Palliative Approach in Residential Aged Care

93

appear until dehydration is far advanced. Therefore, early assessment of signs of dehydration
may be important to consider (e.g. high sodium, high blood-urea-nitrogen, and creatinine).
A systematic review was conducted that examined the existing clinical evidence regarding
the effects of fluid status and fluid therapy on the dying; however, no RCTs or higher quality
studies were located.[204] Given the limitations in the studies reviewed, it was considered
impossible to draw firm conclusions regarding clinical care. The only suggestion regarding
management was to assess each person’s individual circumstances, including the person’s andtheir family’s wishes, in order to formulate recommendations regarding fluid therapy for that
person[204] (Level IV).
Although there is some evidence that dehydration can increase the risk of ulcers andconstipation there is no evidence to date that rehydration makes people more comfortable[205](Level IV). Rehydration may also have a negative effect on cognition and anecdotal evidence
suggests that improved cognition has been reported after withdrawal of the hydratingprocess[206] (Level EO). Intravenous hydration may have negative psychological effects in thatthe infusion acts as a barrier between the resident and the family. It is more difficult to embracea person who is attached to a plastic tube, and doctors and nurses tend to become diverted fromthe more human aspects of care in order to concentrate on the control of fluid balance andelectrolytes when these interventions are used.[189]A possible indication for rehydration is that the resident feels dry despite good mouth care.
Dry mouth is a common problem in many people and is related not only to dehydration but
also to other causes such as drugs, oxygen therapy, candidiasis and mouth breathing[189] (Level
EO). Thus, artificial hydration alone is unlikely to resolve the symptom of dry mouth in mostpeople[201] (Level QE). Additionally, individual’s who are dying may not have any sensation ofthirst and should hydration be required it can be successfully alleviated with small sips of liquidand adequate mouth care[185] (Level IV) or finely crushed ice chips[207] (Level EO).

Management
Regular presentation of fluids to bedridden older people can maintain adequate hydration
status[202] (Level II). A US study was conducted to explore whether the regular presentation of
fluids to 51 residents would result in an increased consumption of oral hydration[208] (Level IV).
The intervention involved the use of two colourful beverage carts (1 yellow, 1 red, because older
people can see these two colours best), which contained a variety of cold and hot beverages thatwere dispensed in colourful plastic cups. (The cart was also decorated in accordance with theseason or any relevant holidays.) The results showed a significant increase in the fluid intake
for most of the residents, an increase in the number of bowel movements, a significant decreasein the number of laxatives residents required, a decline in the number of falls, and a decreasein cost during the hydration period (presentation of regular fluids via two beverage carts)[208](Level IV). This simple, cost-effective intervention resulted in a variety of improvements for
those residents who were able to swallow fluids and it is likely that similar results would beobtained by applying this approach to Australian residents. However, for those residents unableto swallow other approaches need to be determined.

94 		 Guidelines for a Palliative Approach in Residential Aged Care

Another study explored whether the fluid intake of 130 incontinent residents could be
improved using a behavioural intervention that consisted of verbal prompts and beverage
preference compliance[209] (Level III-1). The authors’ reported that the intervention was
effective in increasing fluid intake for most of the residents; however, different approaches wererequired depending on the resident’s severity of the cognitive impairment. For example, verbal
prompting alone increased fluid intake for those with more severe cognitive impairment, but
the same result was not found for those with less impairment who only increased their fluid
intake when they received their preferred drink.
The decision regarding rehydration should focus on the resident’s unique circumstances,including the wishes of the resident and his / her family[204,210] (Level IV; Level EO). The
comfort of the resident is the primary goal, rather than providing optimal hydration[185,190](Level IV; Level QE). Factors important to family members when considering artificial
hydration are issues of symptom distress, ethics, emotional considerations, informationexchange and culture[211] (Level QE). A timely discussion that includes family members, theaged care team, and where possible the resident is required with the aims being to:[211]• attempt to determine the resident’s and his / her family member’s wishes and preferences
regarding artificial hydration;• provide information about the pros and cons of artificial hydration, including any limitations
in our understanding about this process;• recognise and explore family members concerns that they might have that have not been
spoken.
For each resident, the solutions and decisions will vary; however, some key principles are listed
in the following table that can guide the resident, the family and the aged care team in making
decisions in this situation.
Table 13: Principles to guide discussions and decisions regarding hydration[206]In planning for care, and introducing a palliative approach, explore with resident and family their wishes
in the event that the resident is not being able to maintain hydration. These wishes should be clearly
documented and regularly reviewed over time with the resident and family.
•

Identify cause(s) for inability to maintain hydration.

•

Where possible, and if the resident wishes, treat reversible causes.

•

Review the resident’s prognosis and the goals of treatment.

•

Assess whether the decrease in intake is having a negative impact on quality of life.

•

Consider simple non-invasive interventions first.

•

In the event a more invasive intervention is considered necessary, establish review time lines andindications for withdrawal before commencing therapy.

•

Regardless of the interventions instigated, oral discomfort can be treated with good oral care.

Guidelines for a Palliative Approach in Residential Aged Care

95

Guideline:

Hydration
Ref No.

Evidence
level

24.

Recommendations regarding fluid therapy that are based on an
ongoing assessment of each resident’s circumstances, including theresident’s and family’s treatment preferences, improve the resident’s
and family’s satisfaction with the care that is provided.

204

IV

25.

Regular presentation of fluids that include strategies such as acolourful beverage cart, verbal prompting or complying with residents
preferences will increase the amount of oral fluid intake for thoseresidents able to have oral hydration.

202

II

209

III-1

208

IV

Frequent small sips of fluids and adequate mouth care can reduce theresident’s sensation of thirst and oral discomfort that is associated withdehydration.

185

IV

26.

6.5 ANOREXIAAnorexia, or a reduced desire to eat, may occur for some residents. Anorexia can be intermittent
and associated with other medical problems, such as infection, constipation or depression[183,187](Level EO; Level EO). This condition can also be chronic, leading to problems with nutritional
state, weakness and increasing debility. In severe cases anorexia can be associated with Cachexia,
a complex syndrome associated with muscle wasting and weight loss (see following Section 6.6,
‘Cachexia’).
The prevalence of anorexia in RACFs is not known in Australia. However, North American
studies indicated that 30–50% of high-care residents had substandard body weight and midarm circumference, and low serum albumin levels[183,212] (Level EO; Level II). While thesefindings are not necessarily applicable to Australian RACFs, they do suggest the prevalence ofpotential nutritional problems.
As with any symptom, the decision about how and if to treat entails balancing the potential
benefits against adverse effects while recognising the resident’s wishes for treatment andexploration of simple measures.

6.6 CACHEXIA
Cachexia has been defined as a complex syndrome that combines weight loss, lipolysis, lossof muscle and visceral protein, anorexia, chronic nausea and weakness.[194] The prevalence ofCachexia in the general population of older persons is not known. However, studies indicatethat Cachexia is likely to be predictive of morbidity[212] (Level II).
Although Cachexia is most commonly associated with cancer, it is also associated with chronic
heart failure, renal failure and dementia. Significant cachexia in older persons is related topoorer prognosis[212] (Level II). The Cachexia syndrome is a source of psychological distress forindividuals and family members, and prompts attempts to supplement the nutritional statusof the resident. Most people see weight loss as a sign of decline and may begin more aggressive
questioning about their relative’s prognosis.[183] Family members may experience more anxiety

96 		 Guidelines for a Palliative Approach in Residential Aged Careat this time and may require some education regarding the nutritional needs of the resident[183](Level EO). The family can also be helped to understand the importance of not force-feeding
their family member, in order to avoid the resulting nausea and psychological distress for the
resident[185] (Level IV). (See Section 6.4, ‘Nutrition and hydration’, for further discussion ofenteral and parental nutrition).

6.6.1

Assessment

A diagnosis is required to determine the cause for the resident’s loss of appetite and weight. It
is important to differentiate between simply reversible causes for anorexia and weight loss (e.g.
depression, infection, thyroid problems, mouth problems, poor caloric intake) and the anorexia/ cachexia associated with illnesses such as cancer, heart failure and dementia, which is not
simply reversible. This diagnosis can be made from the resident’s clinical history, presence of
substantial weight loss, physical examination and laboratory tests.[198] Metabolic abnormalities
are the main causes of malnutrition, but decreased caloric intake and malabsorption cancontribute to the syndrome.[212] A nutritionist can help assess the resident’s nutritional status
and advise regarding dietary options to maximise nutritional intake[212] (Level II).

6.6.2

Management

The management of anorexia and cachexia should be multidisciplinary and individualised[187](Level EO). Residents should be encouraged to have as many calories orally as possible, or, forthe frail resident, single nutrients or liquid meal replacements should be tried before invasive
techniques are used[176,187] (Level II; Level EO), if this is in accordance with the resident’s
preferences. Management is also aimed at providing psychological support and improving
quality of life[185,198] (Level IV; Level EO).

6.6.3

Corticosteroids

No evidence to date has shown a significant effect between treatment groups for the useof corticosteroids.[187] Some uncontrolled studies have suggested that corticosteroids (e.g.
dexamethasone) may stimulate appetite, but these effects are only temporary and are notassociated with a gain in weight. Prolonged corticosteroid treatment has been associatedwith significant side effects, including hyperglycemias, weakness, delirium, osteoporosis andimmunosuppression[198] (Level EO). The use of corticosteroids is therefore not recommended
based on the lack of benefits when compared with the potential side effects.
Guideline:

Cachexia
Ref No.

Evidence level

27. A review of a resident’s clinical history, the presence of substantial weight
loss, laboratory tests and physical examination are required to make anaccurate diagnosis of cachexia.

212

II

28. For frail residents with substantial weight loss who are unable tohave sufficient oral calories, a trial of single nutrients or liquid meal
replacements is an appropriate alternative.

176

II

Guidelines for a Palliative Approach in Residential Aged Care97

6.7 NAUSEA AND VOMITING
Nausea is the unpleasant feeling of the need to vomit. Vomiting is the forceful expulsion ofgastric contents from the mouth.[213] Nausea can occur without vomiting (the reverse is alsotrue). For example, if a resident says they feel sick but they have not vomited, then the resident
has only nausea. This distinction facilitates accurate assessment and management, because there
are differential diagnoses for nausea and vomiting.
Although nausea and vomiting are common among individuals with advanced cancer, little is
known about the prevalence of these symptoms in RACF residents. Residents often experiencea range of co-morbidities that can cause nausea and vomiting, including renal failure andcardiac failure.[214] The causes of nausea and vomiting may be related to the slowing ofgastrointestinal motility due to colonic (large bowel) slowing or gastroparesis (slowing of theupper gastrointestinal tract) from medications or poor neuromuscular coordination. This isparticularly the case for residents with diabetes, residents who have had a stroke and have nerve
damage around the pharynx and epiglottis or positional changes due to weight loss in the neckthat affects the upper pharynx.
Nausea may also occur as a side effect of a number of medications commonly used in RACFs.
Consequently, the potential causes of nausea are usually numerous and a full history andclinical examination are necessary. It is estimated that a major cause of nausea in residents
in RACFs is constipation, and secondary causes include reduced fluid intake, low fibre diet,decreased mobility, or medication. Both pharmacological and non-pharmacological approaches
have been found to be effective in treating these symptoms[214] (Level EO).

6.7.1

Assessment

The resident needs to be properly assessed to determine the cause of nausea and/or vomiting.
This should involve the family, where possible, to gain a history of the resident’s eating habits andprevious nutritional difficulties, if any. During this assessment the family can also be educatedabout the causes of nausea and/or vomiting and what treatment, if any, the resident desires.
Before the prescription of antiemetic drugs, the resident’s environment should be assessed toreduce the stimulus to nausea.[214] Such stimuli could include cooking smells and unpleasantodours. Mannix (1998)[214] includes the following steps for an appropriate antiemetic strategy:• Determine the probable cause(s) of nausea and/or vomiting;• Determine a suitable route of administration to ensure that the drug reaches its site of action; and• Ensure careful titration of the dose, frequent reviews of the resident and regular provision of
the antiemetic.

6.7.2

Management

Pharmacological management
It is often not possible to identify or correct the underlying cause of nausea and/or vomiting
when a person is in the end stages of life. However, when causes are known, the potential
benefit of any intervention should not outweigh the burden. If the cause is gastrointestinal,

98 		 Guidelines for a Palliative Approach in Residential Aged Caresuch as poor gastric emptying, then a prokinetic agent (e.g. metoclopramide, cisapride or
domperidone) should be used. Should constipation be the cause, then promethazine shouldbe effective. Hyperacidity can produce considerable nausea, heartburn, acidity or a bitter
taste and has been associated with vomiting. Treatment of hyperacidity can be accomplishedby nonabsorbable antacids (magnesium plus aluminium hydroxide preparations), antacid
plus alginate preparations, histamine H2-receptor antagonist (e.g. ranitidine) or a proton
pump inhibitor (e.g. omeprazole). The Therapeutic Guidelines: Palliative Care[109] provide
recommended dosages for these medications.
A recent systematic review of the advanced cancer literature on nausea concluded that there
were few well-designed studies which could be used to develop guidelines for the managementof nausea[215] (Level II). For the gerontological literature, the same finding would also apply.
Consequently, the management of nausea and vomiting will continue to be based on expert
opinion until such studies are conducted.

6.8 DYSPHAGIA
Dysphagia, or difficulty in swallowing, can lead to significant weight loss for residents in
RACFs. Dysphagia is associated with a large number of neurological conditions, such ascerebral vascular accidents, Parkinson’s disease, dementia, multiple sclerosis and motor neurone
disease[104] (Level III-1). The risk factors identified include neurological conditions, an alteredstate of consciousness, decreased cognitive ability, decreased alertness and attention span,
increased impulsiveness or agitation, some medications, and advanced age[104] (Level III-1).
The signs of dysphagia may include:[216]• difficulty swallowing;• facial droop;• choking when eating or drinking;• coughing before, during or after swallowing food or liquids;• refusal to open the mouth and/or accept a large bite of food; and• retention of food in the mouth or pharynx.

6.8.1 Assessment
A resident at risk of swallowing problems requires early assessment and referral to a speech
pathologist or GP[104] (Level III-1). In rural and remote areas where access to speech
pathologists may not be readily available, qualified nurses can be educated to perform screening
assessments of the resident’s ability to swallow in order to identify early signs of dysphagia.[105]Assessment should involve asking the resident, and/or their family, if there is any difficulty
swallowing food or liquids. Questions that could be used during this assessment might include:• Do you choke when eating or drinking?
• Do you experience coughing associated with eating or drinking?
• Does food ever stick in your throat?

Guidelines for a Palliative Approach in Residential Aged Care99• Do you have any problem controlling your saliva?
• Does food ever escape from your mouth?
It is also important for the aged care team to be aware that residents who aspirate do not always
present clinical symptoms of dysphagia.[105]The following recommendations regarding assessment are suggested[104] (Level III-1):• knowledge of risk factors and signs and symptoms is essential for early detection andmanagement; and• once an individual has been identified as having, or being at risk of having, dysphagia, theymust be referred for further assessment to a medical practitioner or speech pathologist.

6.8.2 Management
Dysphagia should be managed in accordance with the agreed goals of care as determined incollaboration with the resident, their family and carers. In addition, the aged care team will
require education on how to feed residents with swallowing disorders. Inadequate staffing canlead to an overburdened aged care team having insufficient time to assist residents who do not
eat quickly, and can lead to labelling such residents as ‘uncooperative’, ‘lazy’ or ‘combative’[216](Level QE). The following suggestions for management of dysphagia may be beneficial[104](Level III-1):• A formalised multidisciplinary management program should be used to help in promoting
early recognition, appropriate management and prevention of complications;• Early and prompt referral should be made to a speech pathologist for assessment andguidance on management strategies;• The aged care team should ensure that the texture, consistency and type of food and fluid are
as prescribed; and• The aged care team should ensure that feeding techniques are undertaken in accordance withthe specific methods recommended by the speech pathologist or physician, and they should
also be aware of the safe feeding techniques generally recommended for individuals withneurogenic dysphagia.
Dysphagia can be managed through various interventions that can reduce the risk of aspiration.
During meal times, residents need to be physically well supported in an upright position[104](Level III-1). Where possible, they should remain in this position for at least one hour following
meals to prevent regurgitation of food from the stomach into the oesophagus (oesophageal
reflux). Residents with dysphagia tire easily; therefore, adequate time needs to be allowed
for them to be fed safely while they are fully awake and alert[216] (Level QE). After the meal,
residents should have their mouths inspected to ensure that food that could be aspirated does
not remain in their cheeks[104] (Level III-1). Education on how to perform emergency measures
is important for the aged care team because residents with swallowing disorders may aspirate.
A suction machine and oxygen should also be readily available.

100 		 Guidelines for a Palliative Approach in Residential Aged Care

Guideline:

Dysphagia
Ref No.

Evidence level

29. A formalised multidisciplinary management program, which includes
input from a speech pathologist, is beneficial in promoting earlyrecognition, appropriate management and prevention of complications
associated with dysphagia.

104

III-1

30. Safe feeding techniques that are recommended by a speech pathologist
or physician, which include the method of feeding and the texture,
consistency, and type of food and fluid, should be undertaken asprescribed to reduce the resident’s risk of aspiration.

104

III-1

6.9 MOUTH CARE
Studies have revealed a high incidence of poor oral health in residents of RACFs[217,218] (Level
EO; Level QE). There are many explanations as to why residents are likely to have poor oral
health. Ageing itself can contribute to oral complications due to changes in the mouth (suchas in tooth structure), wear and tear causing chewing surfaces to become smooth and enamel
to be lost, and decreased or increased levels of salivation. Gum recession also creates ‘pockets’
where food debris and micro-organisms can collect, causing periodontal disease[219] (Level QE).
Increased oral problems may occur due to medications (including oxygen therapy), mouth
breathing, particular medical conditions and poorly fitting dentures. In one RCT, oral side
effects were noted in persons receiving treatment for cancer[220] (Level I), and other RCTs havebeen conducted for people with cancer regarding best practice interventions for the preventionof mouth ulcers (oral mucositis). However, it is not known whether these interventions aretransferable to older persons who do not have cancer as their major illness.
Poor oral health for residents in RACFs is considered to contribute to problems with eating andthe low nutrient and vitamin C levels found[218] (Level QE). When combined with a declined
ability to communicate, and functional debility, it was found that residents were more likely
to have a very poor oral status[217] (Level EO). Plaque retention, sore or fissured tongues, andoral ulceration were considered the main problems for residents regarding oral health[218] (Level
QE). Poor oral health was also attributed to:[217,218]• RACFs not implementing a systematic approach to dental care;• Not implementing an evidence-based approach to dental care; and• Reluctance to provide mouth care to residents.
The aged care team needs to understand the components of a healthy mouth in order topromote good oral care practices[219] (Level QE). A resident with a ‘healthy mouth’ is able tochew food adequately, has an absence of plaque and debris, has adequate levels of salivation,and regularly cleanses by mechanical means (assistance may be required).

Guidelines for a Palliative Approach in Residential Aged Care101

6.9.1

Assessment

A thorough oral assessment is required to provide the basis for sound management of oral careand to facilitate prevention or minimisation of oral complications[221] (Level IV). Althougha number of assessment tools have been devised, there are concerns that many of these lackreliability and validity, limiting their clinical utility[221] (Level IV). However, the
D-E-N-T-A-L screening tool was found to have reasonable validity and reliability for assessing
severe periodontal and denture needs, though it was not sensitive to identifying persons withsevere need for denture-related care[222] (Level IV).
The D-E-N-T-A-L is a self-report questionnaire that looks at the older person’s perceptionof dental treatment needs.[223] It is not an assessment tool; rather it helps to determine theindividual’s need for referral for further evaluation. The older person completes the assessment
by responding ‘yes’ or ‘no’ to the following areas of concern:
Table 14: The D-E-N-T-A-L self-report questionnaire[223]

Assessment item

Point value

Dry mouth2

Eating difficulty1

No recent dental care (within 2 years)

1

Tooth or mouth pain2

Alternation or change in food selection

1

Lesions, sores or lumps in the mouth

2
SCORE

For each ‘yes’ the point value is given (‘no’ = 0). Positive items are then calculated, which
provides a score. A score greater than 2 points indicates that a dental problem exists that might
affect the resident’s wellbeing.[223] The D-E-N-T-A-L is appropriate for use with older persons
with no cognitive impairment; however, further research is required before the tool can beused for people with advanced dementia. Similarly, further testing is required to determine thevalidity and reliability if the tool is completed by anyone other than the older person.
One further tool that has reasonable reliability and validity[222] (Level IV) is the single-item selfreport Geriatric Oral Health Assessment Index to dental care (GOHAI).[224] The GOHAI uses
a single question: “How would you describe the health of your teeth and gums? Would you say
it is excellent, very good, good, fair or poor?”[224] The responses are then scored from
1 to 5, 1 for ‘excellent’ through to 5 for ‘poor’. This single question was better than the
D-E-N-T-A-L at identifying people with a severe need for denture related care, severe dental
need or severe periodontal need[222] (Level IV). Scores of 4 or 5 were found to be the mostaccurate for identifying dental care needs and a suitable cut-off point for ensuring that referrals
for dental evaluation and treatment were made[222] (Level IV).
The GOHAI could be an appropriate screening tool to include in a resident’s assessment,
given its brevity. However, as with the D-E-N-T-A-L, the GOHAIs appropriateness for older
persons with advanced dementia has not been determined and further research is required. In
the interim, the most appropriate screening tool for use with residents is the GOHAI, due to102 		 Guidelines for a Palliative Approach in Residential Aged Carethe tools accuracy for identifying older persons who do not require care, which the
D-E-N-T-A-L is unable to do[222] (Level IV).
Irrespective of which tool is the most appropriate, clear standards are required regarding
routine mouth care. These standards need to address denture care, ‘natural’ teeth care, plaqueremoval, tongue care, requisite materials for mouth care, regular oral screening, pathways forreferrals, and types of oral treatments available[217] (Level EO). Assessment should include
the fit of dentures, moistness of the oral cavity, presence of gum inflammation, infections
such as Candida, and presence of mucosal lesions or ulcers. Those most at risk of poor oral
care are residents who are reluctant to eat and drink, who have lost their thirst reflex and are
dehydrated, or are receiving medications (e.g. antidepressants, antihypertensives, antipsychotics,
diuretics, narcotic analgesics) that exacerbate oral problems, i.e. xerostomia (dry mouth;
see Glossary).
The fundamental principles for oral care are that it must be individualised and that thefrequency of care is more important than the use of specialised agents. Individualised
assessment helps determine specific needs and the level of self-care the resident is capable of,which should then guide any adaptations of standard practices[217] (Level EO).

6.9.2 Management
No single intervention is appropriate for oral care of residents receiving a palliative approach.
Instead, a range of simple measures is the most effective in managing and improving oral care.
These measures, when instigated early, can prevent and reduce oral complications. Regularoral hygiene, including cleansing with water, is essential for the resident’s comfort. Despite thenumber of commercial products available, research has shown that rinsing with water, cleansing
with a soft toothbrush and toothpaste, and regular soaking of dentures in a weak non-toxic
solution are the most effective oral-cleansing agents[225] (Level II).
A multidisciplinary approach is preferable, with collaboration between the aged care team,dental services, occupational therapists and dieticians to ensure that the aged care teamare supported in their practice of oral care for residents[217] (Level EO). Improved referraland feedback procedures are also required to ensure that all the aged care team are aware ofthese protocols. A continuing education program for the aged care team (of all levels) is also
recommended to promote good oral care practices[217] (Level EO).
Guideline:

Mouth Care
Ref No.

Evidence
level

31.

Good oral hygiene, regular assessment, cleansing of dentures and oral
fluids can reduce oral complications.

221

IV

32.

Oral health assessments that include the question, “How would
you describe the health of your teeth and gums? Would you say it isexcellent, very good, good, fair or poor?” for residents who are able torespond increases accuracy in identifying residents who require further
evaluation and dental treatment.

222

IV

33. Rinsing the mouth with water and cleansing teeth with a soft toothbrushand toothpaste is an effective oral cleansing routine that is cost-efficientand reduces the resident’s risk of oral mucositis (mouth ulcers).

225

II

Guidelines for a Palliative Approach in Residential Aged Care103

6.10 SKIN INTEGRITY
The major skin problems associated with ageing include oedema of limbs, wounds and ulcers.
Normally the goal of wound management is to promote healing; however, in a palliative
approach this may not be possible, particularly in terminal care (See Chapter 14, ‘End-of-life(terminal) care’).
It is anticipated that most care assistants and nurses in RACFs will have considerable experiencein providing adequate skin care, so these procedures will not be repeated here. Suffice to saythat skin integrity is important for residents receiving a palliative approach. The complexityof maintaining skin integrity with a palliative approach requires a multidisciplinary teamintervention that involves family members and carers. Any provision of information for thefamily and carers must be approached in a sensitive and realistic manner. With this in mind, thetreatment for skin integrity should be realistic and agreed to by all concerned.
A recent systematic review of support surfaces for pressure ulcer prevention concluded thathigher specification foam mattresses rather than standard foam mattresses could reduce theoccurrence of pressure ulcers in people at risk[226] (Level I). The Reviewers’ considered that thebenefits of using alternating and constant low pressure devices and different alternating pressuredevices (both static and dynamic, i.e., alternating pressure supports, low air-loss mattresses orbeds) were unclear due to reviewers’ concerns regarding the methodologies used in RCTs. The
Reviewers also concluded that there was insufficient evidence to support the merits of overlays(with the exception of Australian medical sheepskins), seat cushions, limb protectors, turning
tables, and electrical stimulation (with or without gels) to decrease the incidence of pressure
ulcers[226] (Level I).
Some benefit was found for the use of Australian Medical Sheepskins (natural not synthetic
fibre), which are manufactured to conform to Australian standards, for reducing pressure ulcers,
particularly for people who were at low to moderate risk[226] (Level I). Further studies havebeen conducted and the results appear promising.[227–229] For example, a recent RCT involving
441 people with an average age of 63 years was conducted to determine the effectiveness of
the Australian medical sheepskin in preventing pressure ulcers in a hospital population at low
to moderate risk[227] (Level II). After being formally assessed for the risk of developing ulcers
the participants were randomly allocated to the sheepskin group (n = 218) or the referent
group (n = 223) to receive usual treatment as determined by the ward staff. Participants in the
sheepskin group were found to have developed new pressure ulcers at less than half the rateof those in the usual treatment group. Although the setting for this study was acute care, theaverage age of the participants (M = 62.1 years) suggests that this approach may be appropriate
for residents in aged care settings; however, further research in aged care is required.
Although it has been common practice to turn the resident every two hours to prevent ulcers,a more suitable approach is based on the individual resident’s assessed need. To determine theappropriateness of such practices the following questions have been proposed [230] (Level EO):
• Is it essential to alter the position of the resident?
• Will the intervention cause more discomfort than is necessary?
• Can we use other alternatives such as Australian Medical Sheepskins? (See also Chapter 14,
End-of-life Care for further discussion of comfort associated with frequent position changes).

104 		 Guidelines for a Palliative Approach in Residential Aged Care

6.10.1 Oedema of the limbs
Assessment
The limbs should be examined for any signs of swelling. Residents and their families can also
indicate if they perceive that any limbs seem more swollen than normal. Assessment should
include investigations to determine low albumin levels, which are associated with loss of protein.

Management
Oedema of the limbs can cause the resident, family members and carers concern, but there issometimes little that can be done to resolve the swelling. Support for the family might include
providing them with information on the causes of the oedema, as well as involving the family
in using techniques that may yield some relief. Some of the suggested options could include[230](Level EO):
• elevation of the swollen limbs;• daily or more frequent washing (only if necessary);• minimal handling;• a bed cradle;• pain relief;• leaving limbs uncovered on water-resistant non-stick disposable sheets to protect bed linen(from weeping that may occur from the tissues in extreme cases);• massage (if the oedema is not extreme), as this might provide some relief for the resident— this can be provided by the family or a massage therapist; and• dietary interventions — depending on albumin levels, stage of the resident’s illness and/or
ageing, and their preferences.

6.10.2 Wound care
Assessment
Careful assessment when dressings are changed is essential to identifying infection early. Other
areas of assessment relevant to wound care should also be considered, such as pain. (See also
Section 6.2, ‘Pain management’, for a brief discussion of incident pain and recommended useof analgesia for wound care.)Management
Wound care specialists fulfil an important role as part of a multidisciplinary team as part of apalliative approach in RACFs. They can be consulted for their expertise; however, their services
are generally limited to the more populated or metropolitan areas and hence they may be
unavailable in rural and remote facilities.

Guidelines for a Palliative Approach in Residential Aged Care

105

Wounds can occur in residents for a variety of reasons, such as immobility, inadequate skinintegrity, trauma and malnutrition. The same principles for wound management in general
health care are usually applicable to a palliative approach (see the Australian Standards for
Wound Management.[231] However, when devising a treatment plan for wound care the central
focus is the preference of the resident and/or their family. Residents in the terminal phase ofageing or illness may be unlikely to have wounds that will heal before they die, but care should
remain attentive and be focused on ensuring their comfort.

6.10.3 Ulcers
As it is anticipated that the aged care team will have a sound understanding of the assessmentand management of ulcers, this will not be covered in this section. Should further direction
be required, contact the Australian Wound Management Association. However, as nonpharmacological interventions are frequently used in the treatment or prevention of ulcers, theliterature for this area has been reviewed and is provided below.

Non-pharmacological management
Systematic reviews of RCTs to assess the effectiveness of the use of therapeutic ultrasound[232](Level I) and electromagnetic therapy[233] (Level I) in the treatment of ulcers found no evidenceof these therapies being beneficial.
Guideline:

Skin Integrity
Ref No.

Evidence level34.

The use of high specification foam mattresses rather than standard
foam mattresses can reduce the incidence of pressure ulcers.

226

I

35.

The use of Australian Medical Sheepskins (natural not synthetic fibre)
may be effective in reducing the incidence of pressure ulcers for thosepeople who are at low to moderate risk of developing these ulcers.

226 227

I
II

6.11 BOWEL CARE
Bowel symptoms can affect a person’s sense of wellbeing and have a negative impact on qualityof life. Bowel care is therefore a key component of a palliative approach[234](Level QE). Thereis considerable variation in what are considered ‘normal’ bowel habits among older people.
The bowel habits of each resident should be determined, rather than comparing one resident’s
bowel habits to that of other residents. Faecal incontinence is associated with immobility,
constipation, dementia and stroke for residents in RACFs[235] (Level II). Bowel changes canincrease for residents receiving palliative interventions. The fundamental principles of bowel
care in the palliative approach are ongoing assessment, prompt and individually tailoredtreatments, and minimisation of interventions that can cause loss of dignity.

6.11.1 Assessment
Bowel assessment is an ongoing component of care in all RACFs. Because medications
frequently used in a palliative approach can increase the risk of bowel symptoms, including

106 		 Guidelines for a Palliative Approach in Residential Aged Careconstipation, increased vigilance by the aged care team is required. A daily assessment of bowel
function is required and should include the resident’s preferences for treatment, history ofbowel habits, and management[234] (Level QE). Assessment could include consideration ofissues such as whether the resident expresses a desire to defecate, whether they are showing signsof discomfort, whether they are eating and drinking, whether the rectum is full, and whether
there are skin problems caused by bowel leakage due to overflow from constipation.
Any symptoms of constipation should be considered, as the cause dictates the treatment.
Symptoms may include:[236]• nausea or vomiting;• straining during defecation;• infrequent bowel movements;• feelings of incomplete emptying after bowel movements;• frequent small amounts of diarrhoea;• rectal pain on defecation;• stomach pain, distension or discomfort (stimulant laxatives, i.e. lactulose, can cause these• problems, so it is important to assess if the laxative itself is causing the symptom);• hard stools; and• faecal incontinence.

6.11.2 Management
Pharmacological management
Managing constipation requires determining the type of constipation. It may be either primary(or ‘simple’, i.e. associated with inadequate fibre intake, dehydration, reduced mobility, orwithholding faecal evacuation and a reduction in muscle tone), or secondary, which may occur
as a result of disease or drug therapy.[236] The most significant factor for residents receiving apalliative approach is opioid-induced constipation[234] (Level QE).
Laxatives have been considered as first line treatment for incontinence by RACF staff; however,a recent study involving 21 RACFs found that the use of irritant or osmotic laxatives alone
was unsuccessful in this regard[237] (Level QE). Instead, the authors found that the use of bulk
laxatives (i.e. fybogel or regulan) when combined with suppositories were associated with thelowest rates of faecal incontinence. The authors recommended that suppositories be used after
bowel clearing to prevent recurrent constipation[237] (Level QE). Additionally, no evidence
was found to support the view that bulk laxatives were contraindicated when used for chronic
constipation in older, immobile persons [237] (Level QE). A causal relationship between laxative
use and diarrhoea in the immobile older person was found, with a recommendation for the
additional use of a bulking agent to reduce the incidence of diarrhoea[234] (Level QE).
If a laxative must be prescribed for a resident, then a discussion between the doctor and agedcare team members to decide on the most appropriate laxative is encouraged[237] (Level QE).

Guidelines for a Palliative Approach in Residential Aged Care107

Brocklehurst and colleagues (1999)[237] found that the two most commonly used laxatives in
RACFs were lactulose (36%) and senna (29%). Senna was considered to be significantly more
effective and less expensive, despite the popularity of lactulose; therefore, it is recommended
that the cheaper laxative be trialled first [235] (Level II). If a laxative is used, compensatory
measures for dehydration and electrolyte depletion should also be considered[237] (Level QE).
Non-pharmacological management
A study of 100 palliative care patients (average age 67) was conducted to determine assessment
procedures for bowel care and patient preferences[234] (Level QE). The results of the study
indicated that patients preferred non-pharmacological approaches for their bowel care suchas diet, regular gentle exercise, abdominal massage or administration of a hot pack as firstline interventions whereas nurses preferred to use medication (either oral or rectal)[234] (Level
QE). Despite this patient preference for non-pharmacological bowel care management,
the effectiveness of most of these approaches has not been validated[235] (Level II) with the
exception of one RCT involving exercise.
An RCT was conducted to examine whether an intervention that combined low-intensity
exercise and incontinence care (both urinary and faecal) would be beneficial and result in costsavings to the RACFs[238] (Level II). The RCT involved 190 incontinent residents from four
nursing homes who were randomly assigned to the intervention (Functional Incidental Training[FIT]) group or the control group. In all cases, the intervention group performed significantly
better than the control group. For example, the number of residents with constipation or faecal
impaction in the control group was significantly higher than for the intervention group for thesame periods. This finding indicates that low-intensity exercise combined with incontinencecare may be beneficial in reducing the incidence of constipation or faecal impaction forresidents, although further research is required with older people who are receiving a palliative
approach to their care. The use of the FIT intervention, although cheaper, did not result insignificant cost savings compared with usual care methods.
Guideline:
36.

Bowel Care

Eliciting information that includes a history of residents’ bowel habits
and their preferences for treatment, an awareness of complementary
methods of bowel care (e.g. low-intensity exercise, abdominal
massage and hot packs) and better documentation procedures, will
improve bowel management and residents’ well-being.

Ref No.

Evidence level235, 238

II

234, 237

QE

37.

Discussion between the doctor and nursing staff about themost appropriate laxative for use with a resident will enhance
management decisions regarding bowel care.

237

QE

38.

The combined use of bulk laxatives and suppositories is associatedwith the lowest rates of faecal incontinence. The use of suppositories
after bowel clearing can prevent recurrent constipation.

237

QE

39.

Where a laxative is required, it is recommended that a cheaper
laxative be trialled first and that appropriate compensatory measures
should be taken to avoid dehydration and electrolyte depletion.

235

II

237

QE

108 		 Guidelines for a Palliative Approach in Residential Aged Care

6.12 DYSPNOEA
Dyspnoea is defined as an awareness of uncomfortable breathing that can seriously affect qualityof life and is frequently associated with the end stage of various diseases, such as cancer, cardiac
failure, obstructive airway disease, and neurodegenerative disorders[160] (Level II). The experienceof dyspnoea comes from multiple physiological, psychological, social and environmental factorsthat can result in secondary physiological and behavioural responses[239] (Level II). The experienceof dyspnoea (i.e. breathlessness) may not be directly attributed to the disease, because other factors
such as anxiety exacerbate the symptoms[240] (Level IV). Dyspnoea directly affects all aspects of aresident’s activities of daily living, limits mobility, increases anxiety, and can leave residents feelingfearful and socially isolated[239] (Level II). It can also be a sign of a deteriorating condition inresidents receiving a palliative approach.
Dyspnoea triggers panic, and panic exacerbates dyspnoea, so the pattern becomes cyclical. The
evidence suggests that 70% of people receiving a palliative approach experience dyspnoea inthe last six weeks of life[241] (Level QE). In the terminal phase of ageing and/or illness, fear of
suffocation may be the most troubling symptom. This may significantly affect the ultimate
place of death[240] (Level IV).
Dyspnoea may also be a distressing and frightening symptom for the family. Advice andsupport regarding the management of dyspnoea[239] (Level II) from the aged care team, as well
as reassurance and a calm presence, can help lessen the anxiety experienced by the resident
and their family. It is important to note that even after a resident’s dyspnoea has been relievedfamily members might require more attention from the aged care team[241] (Level QE). Family
members’ perceptions of a resident’s suffering can influence how the family makes meaning of,and come to terms with, the dying experience of the resident.

6.12.1 Assessment
A complete history and physical examination will illicit enough information to determine adiagnosis of dyspnoea in most people. The history should cover factors that are likely to haveinfluenced the severity of the symptom[239] (Level II), including pre-existing illnesses (such as
COPD), exacerbating factors (such as anaemia or profound anxiety) and additional factors(such as pulmonary embolism, infection or left ventricular failure).
The resident’s perception of dyspnoea can also be measured using a visual analogue scale, with 0
being no shortness of breath and 10 being the worst shortness of breath. This measure provides
the aged care team with some understanding of how distressing dyspnoea is for the resident.

6.12.2 Management
The aim of managing dyspnoea for a resident receiving a palliative approach is to minimise
suffering and not to prolong life[241] (Level QE). If there are specific causes of dyspnoea
these should be treated in accordance with the resident’s preferences. These causes may
include cardiac failure, pulmonary embolus, infection, anaemia, arrhythmia, pleural effusion,bronchospasm or pneumothorax. Managing the symptoms of dyspnoea should include
supportive care for the resident, family members and their carers, and the use of medications,which may include opioids. A comprehensive plan of care, including ready access to appropriate

Guidelines for a Palliative Approach in Residential Aged Care109

medication treatment along with non-pharmacological interventions to reduce psychologicaldistress, may prevent unnecessary transfers to acute care settings of residents with gradually
increasing dyspnoea[240] (Level IV).

Pharmacological management
Pharmacological intervention depends on the early recognition of the symptoms ofdyspnoea[239,242] (Level II; Level I). Pharmacological treatments that have been considered foruse with dyspnoea include use of oxygen, sedatives and opioids.

Opioids
A systematic review of studies was conducted to examine the effectiveness of opioid drugs given
by any route to relieve the symptoms of dyspnoea in people receiving a palliative approach[242](Level I). The reviewers concluded that there was a beneficial effect on the symptom ofbreathlessness for opioid drugs administered orally or parenterally. However, no effect was
found to support the use of nebulised opioids for dyspnoea, and the reviewers concluded that it
was hard to justify the continued use of this treatment[242] (Level I).
An RCT found that people with dyspnoea benefited from sustained-release low-dose
oral morphine[160] (Level II). Opioids decrease the perception of dyspnoea and decrease
oxygen consumption. Therefore, opioid therapy is the main intervention recommended inmanaging dyspnoea.

OxygenInitiating a dose (or a change of dose) of oxygen may be contra-indicated (particularly forresidents with chronic respiratory condition), and the commencement of oxygen should only
be undertaken under the direction of a medical practitioner. Oxygen is often considered to
be a non-specific treatment for dyspnoea; however, individuals can become highly dependenton oxygen supplementation to the extent that some people consider it to be their ‘lifeline’[243](Level EO).
Not all residents with dyspnoea will benefit from oxygen and extreme caution is warranted
regarding the use of oxygen supplementation due to its contraindications and risk ofdependency for some residents. However, if the use of supplemental oxygen were indicated,then a nasal cannula is recommended, because masks make some residents feel isolated andfrightened. An initial 24-hour trial of continuous or intermittent oxygen supplementation isrecommended, followed by some form of subjective assessment by the resident to determine thetherapy’s benefit[243] (Level EO). However, it should be explained to residents and their families
that only a small number of residents benefit from oxygen and other alternatives are available
that might be more beneficial (these are discussed below).

Non-pharmacological management
Two studies have been conducted regarding a therapeutic intervention that combined breathing
retraining, psychosocial support and development of adaptive strategies for the management ofdyspnoea[239] (Level II);[244] (Level II). Both studies found that interventions using psychosocial

110 		 Guidelines for a Palliative Approach in Residential Aged Caresupport, breathing control and learned coping strategies helped individuals to cope withdyspnoea and reduced their physical and emotional distress. Both studies also involved theindividual’s family members.
Other non-pharmacological interventions that are considered beneficial for reducing the distressof dyspnoea, include[243] (Level EO):
• reducing the resident’s need for exertion;• propping up the resident;• having a cool fan blow on the resident’s face; and• physiotherapy.
Guideline:

Dyspnoea
Ref No.

Evidence level40.

A comprehensive plan of care including ready access to appropriate
medication, plus non-pharmacological interventions to reduce
psychological distress, may prevent residents with gradually increasing
dyspnoea being unnecessarily transferred to hospital.

240

IV

41.

A physical examination and a complete history that covers factors thatare likely to have influenced the severity of the symptom, including
pre-existing illnesses and exacerbating factors will provide sufficient
information to accurately determine a diagnosis of dyspnoea.

240

IV

42.

Non-pharmacological interventions based on psychosocial support,
controlled breathing and learned coping strategies can help residents copewith dyspnoea, which will reduce their physical and emotional distress.

239, 244

II

43.

The use of sustained-release low-dose oral morphine administeredorally or parenterally can benefit individuals with dyspnoea by reducing
the severity of their symptoms and improving the quality of their sleep.

160

II

6.13 COMPLEMENTARY THERAPIESThe National Center for Complementary and Alternative Medicine (NCCAM) in North
America defines complementary and alternative therapies as a group of diverse medical andhealth care systems, practices and products that are not presently considered to be part ofconventional medicine.[245] The Center also distinguishes between ‘complementary’ and‘alternative’ medicines, with complementary medicines being used together with conventional
medicine and alternative medicines being used in place of conventional medicine.
A systematic review of therapies involving complementary and alternative medicines (CAM)
for symptom management near the end of life found that, despite a dearth of evidence, there
is adequate data to support the use of some CAM therapies.[246] The authors’ conclusions werethat for people who were dying or who had cancer:• CAM therapies were beneficial for those who could not tolerate or did not want to takepain medications;• CAM therapies were helpful adjuvants to analgesic therapies;

Guidelines for a Palliative Approach in Residential Aged Care111

• CAM therapies may be culturally sensitive for many people, and were beneficial in enhancing
a person’s sense of control;• For pain management, in addition to using traditional analgesics (including opioids), it may
be useful to combine such treatments with acupuncture, TENS, relaxation and imagery, andhypnosis; and•To treat the underlying causes of dyspnoea (for people with moderate to severe
breathing difficulties) and to improve functional capabilities (e.g. walking) it is valuable to use
acupuncture, acupressure, muscle relaxation with rebreathing training, and rebreathing training
combined with coping strategies[246] (Level II).

Aromatherapy
Aromatherapy has been considered as an appropriate treatment for the reduction of behavioural
disturbances in people with severe dementia. Recent studies of the merits of aromatherapy andaromatherapy massage have been conducted, including some RCTs, which indicate positiveeffects of aromatherapy with essential oils[247] (Level II). Ballard, O’Brien, Reichelt, and Perry(2002)[248] conducted a RCT regarding the use of lemon balm (Melissa Officinalis) versus aplacebo oil (sunflower oil) with 71 residents in aged care with severe dementia. Sixty percent(n = 21) of those in the lemon balm group were found to have a 30% reduction in levels ofagitation, which was significantly higher than the placebo group (14%). Quality of life scoresalso improved significantly for those residents in the lemon balm group compared with theplacebo group; percentage of time spent socially withdrawn; and percentage of time engaged inconstructive activities. No side effects were observed during the trial. These results suggest thatthe use of aromatherapy may be beneficial for reducing behavioural disturbances and improving
the quality of life for residents with severe dementia[248] (Level III-1).
An RCT was conducted to determine the merits of using aromatherapy and massage (AM),conversation and aromatherapy (CA), and massage only (M) with 21 people with severe
dementia[249] (Level II). The only significant difference was a reduction in agitation for thoseparticipants in the AM group during the hours of 3 and 4pm compared with the CA and control
group. No other significant differences were found between groups or at the other three times when
behaviour was observed. Although the sample is small, it does suggest that the use of aromatherapy
with massage may be beneficial for residents with severe dementia, particularly mid-afternoon.
There is also some evidence that massage (with or without essential oils) reduces anxiety in
hospice patients[250] (Level III-1). However, the addition of an essential oil appears to enhancethe effect of massage and to improve physical and psychological symptoms, as well as overall
quality of life.

Music therapy
A systematic review of the literature found that there were no RCTs regarding the use ofmusic therapy for residents with severe dementia had a positive effect on residents’ levels ofagitation[251] (Level II). However, lower level studies have been undertaken that suggest that
this type of therapy may have benefits. For example, Denney (1997) played background music
during meal times for one week, followed by a week with no music and found that levels of112 		 Guidelines for a Palliative Approach in Residential Aged Careagitation dropped by 56% after week 1[252] (Level IV). Disruptive behaviours increased in thefollowing week when no music was played. This finding supported an earlier study that foundthat music used during meal times for 30 residents who were cognitively impaired in weeks 2
and 4 resulted in a reduction in an overall reduction in agitated behaviours compared with anincrease in agitated behaviours when music was not played during weeks 1 and 3[253] (Level IV).
Another study considered the use of recorded preferred music during bath time to reducethe incidence of aggressive behaviour among 18 residents with severe levels of cognitive
impairment[254] (Level IV). The preference for resident’s music was determined by a family
member. The experimental group played recorded selections of resident-preferred music during
a two-week period compared with a control group that had no music played during theirbath times. The conditions were then reversed for a further two weeks. The results indicatedthat playing preferred music during bath times led to a reduction in total counts of aggressive
behaviours compared with the control condition. There were also reductions in individual
aggressive behaviours such as yelling, abusive language, verbal and physical resistance; however,these behaviours were not statistically significant. Although these results appear significant, thesample size was too small and therefore, the results may not be generalisible to other settings.
Despite concern regarding methodological weakness of the previous study, the evidence does
indicate that playing preferred music may be beneficial in reducing the incidence of aggressive
behaviours and agitation by residents with severe dementia such as agitation[252,253] (Level IV).
Music should be provided using an individualised approach because it is probable that music
preferences, including having no music played, will vary considerably amongst residents.

CAM therapies in RACFs
Little research has been undertaken on the prevalence and role of CAM therapies in RACFs;
however, some research has been conducted with older persons. Foster and colleagues(2000)[255] found that 30% of North Americans aged 65 years and over reported using
alternative medicines and 19% had visited an alternative medicine provider. Chiropractic andherbal use were the most common treatments[255] (Level III-3).
Spoelhof and Foerst (2002)[256] (Level EO) have commented on issues and concerns inmanaging CAM therapies in RACFs. They highlight some of the potential adverse effectsof commonly used medicinal herbs and possible side effects of the use of magnet therapy.
For example, there is evidence to suggest that herbal remedies are not necessarily safe. Ernst(1998)[257] reviewed the data on published adverse effects of botanical preparations, andconcluded that, given the extent of use, there is an urgent need for serious research into therisks of phytomedicines. A RCT conducted in the Netherlands found that ginkgo was not aneffective treatment for older persons with mild to moderate dementia, which contrasted withearlier studies’ findings[258] (Level II).
An RCT evaluated the effects of cognitive stimulation therapy groups on cognition and qualityof life for 201 older persons with dementia (cognitive stimulation therapy is also known
as ‘reality orientation’)[259] (Level II). The process involved the use of a reality orientation
board that showed personal and orienting information. The topics included using money,

Guidelines for a Palliative Approach in Residential Aged Care113

word games, the present day, and famous faces. The focus of these sessions was to promote
information processing rather than to prompt recall of factual knowledge. The authors
concluded that:• Cognitive stimulation therapy groups improved cognitive function and quality of life forpeople with dementia;• The results compared favourably with trials of drugs for dementia (i.e. acetylcholinesterase
inhibitors);• Cognitive stimulation therapies can be used in diverse settings; and• Cognitive stimulation therapies are enjoyable for people with dementia, and the use of thistype of cognitive training does not lead to adverse reactions such as frustration, as somestudies previously indicated.
Although this RCT provides promising results for residents with cognitive impairment, themerits of such an approach with residents requiring a palliative approach were not considered
and, therefore, further research is required.
The Australian Pain Society (2004)[94] has developed guidelines relating to pain management.
These guidelines advocate principles regarding the use of CAM therapies. These principles are
reproduced here, with some adaptations, due to their clarity:[94]• For safety reasons, members of the aged care team must always be informed before a
CAM therapy is used (for example, St John’s wort interacts with numerous prescription
medications). This principle also facilitates a comprehensive care plan to be developed basedon the needs of each resident;• To reduce the risk of possible assault claims, clear approval from the resident, whether
cognitively or communication impaired, bedridden or fully capable, is essential before a
CAM therapy is used on the recommendation of family, friends, staff or doctors;• Residents who are interested in any CAM therapy should be fully informed about its safety
and effectiveness;• CAM therapists should be carefully selected so that the resident has confidence in theircredentials and qualifications; and• It is advisable to check with private health insurers to determine whether a CAM therapy
is covered.
CAM therapies may be beneficial for some residents, depending on their symptoms,
culture, and beliefs about the use of such therapies. There is some evidence to support theuse of a limited number of CAM therapies for pain management, symptom alleviation andimprovement in quality of life. However further studies, particularly focusing on palliative careand RACFs, are still required.

114 		 Guidelines for a Palliative Approach in Residential Aged Care

Guideline:

Complementary Therapies
Ref No.

Evidence level

44.

Generally, those who are unable to tolerate or who refuse pain
medications as part of a palliative approach may benefit fromappropriate complementary therapies. These therapies may also fit
better with culturally specific preferences and enhance resident’s
sense of control.

246

II

45.

The combination of traditional analgesic treatments withacupuncture, TENS, relaxation and imagery, and hypnosis may
be helpful for symptom management because they may reduce
intractable pain, thereby improving quality of life.

246

II

46.

The use of acupuncture, acupressure, and muscle relaxation
with rebreathing training or rebreathing training combined withcoping strategies may reduce dyspnoea and improve function(e.g. walking ability).

246

II

47.

The use of aromatherapy massage for residents with advanced
dementia may reduce the incidence of disturbed behaviour, thelevel of anxiety and improve quality of life.

247
249
248

II
II
III-1

48.

A massage with essential oils is beneficial for reducing levelsof anxiety and improving quality of life for people receiving apalliative approach.

247
250

II
III-1

49.

The use of Ginkgo for older persons with mild to moderatedementia or age-associated memory impairment is notrecommended because it was found to have no beneficial effects.

258

II

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CHAPTER 7

PSYCHOLOGICAL SUPPORTA review of the literature on physical frailty in older persons found that frailty referred not only
to physical wellbeing but had psychological and social dimensions as well[260] (Level III-3).
Similarly, a palliative approach focuses not only on physical symptoms but also on psychologicalcare. Psychological care is concerned with the psychological and emotional wellbeing of theresident and their family, including issues such as self-esteem and adapting to ageing, illness andthe RACF environment. The fundamental principle for psychological support is an accurate
diagnosis of the factors contributing to psychological distress.
Psychological distress is the term applied predominantly to anxiety, phobic and depressive
symptoms.[261] The most common psychological problems for residents requiring a palliative
approach are depression, confusion and anxiety, with depression being one of the most prevalent
psychiatric problems among older persons in general[261] (Level IV). Changes in the resident’s
emotional and cognitive abilities reflect both psychological and biological effects of the person’s
medical condition and treatment. Psychological distress, therefore, may be associated with physicaldistress. For instance, individuals suffering from anxiety may experience increased physical orsomatic pain and compromised immune function[262] (Level EO). Therefore, the interactive effectsof psychological and physical wellbeing need to be carefully considered.
Depression and anxiety are generally considered to be reactions to loss and to threats associatedwith end-of-life illnesses. Confusion can also be a complicating factor at this time. The
presence of depressive symptoms can make palliation of pain difficult to achieve[263] (Level
QE), particularly for residents who have dementia and are dying[264] (Level IV). Both somaticand psychological symptoms of depression and anxiety can make a diagnosis more difficult[265](Level EO). For example, anxiety might appear as nausea or dyspnoea, and depression may
manifest as intractable pain. These symptoms may respond poorly to medical interventions andnot appear to be based on medical pathology.[265]However, psychological well-being can be supported by and may be improved by good andtruthful communication between individuals and those who provide their care[266] (Level QE).
In an examination of patient preferences of ordinary nursing and personal care, irrespective of
more substantive palliative issues, communicating effectively was seen as important[267] (Level
QE). The following story illustrates the need for good communication and family involvementin the assessment of a resident’s psychological distress.

Guidelines for a Palliative Approach in Residential Aged Care117

Vignette 8: Mr Poulton’s story
It was time for the regular review of Mr Poulton’s care, his two sons being invited to attend.
They were also anxious to discuss with the doctor what they perceived as signs of theirfather’s depression. Mr Poulton, aged 89, suffered the debilitating effects of Parkinson’s
disease, as well as cardiac problems and signs of dementia. Given the choice, he wanted tocome to the meeting “to speak for myself.“ The process of asking him about his response
to life in the RACF was painfully slow, because his replies were given in halting, hesitantspeech. “What do you miss most?” he was asked. “The loss of speech” he replied, withsome emotion. His older son explained that, until he was 85, Mr Poulton had been aregular participant in an elite play-reading group, having significant skills in performing
Shakespeare’s characters. Through the ensuing discussion, it became evident that more
understanding was needed on the part of the aged care team when communicating with
Mr Poulton. It was also agreed that medication might help to lift his mood. His care plan
was adjusted to highlight his preference for more time to be spent on verbal communication
than trying to improve his mobility: “I don’t mind if I can’t walk, but I do mind if I can’t havea chat.” Some of the aged care team and family members had perceived his low mood as
indicating a wish for death. Although severely disabled and increasingly dependent, he said
with animation, “I hope I can look forward to a few more years yet.”

7.1 DEPRESSION
Depression is one of the most common psychiatric disorders in older persons and is asignificant concern within both aged care and palliative care. Evers and colleagues (2002)[268](Level IV) undertook a study on depression among residents with dementia and residents
without dementia from a US long term care facility. They found that depression was a major
concern for both groups in the last six months of life and that under diagnosis of depression
was an important concern. Similar findings exist for Australian residents; for example, it has
been suggested that 40% of residents in Australian RACFs were mildly depressed[269] (Level
QE), with higher rates of depression evident in residents in high-care facilities compared to
low-care facilities[270] (Level EO).
Prevalence rates of depression range from between 25% and 45% among people receiving
palliation[263] (Level QE), yet the percentage of those receiving treatment for depression issignificantly lower. Findings suggest that potentially large numbers of psychologically distressed
residents are not receiving appropriate psychological care [261] (Level IV).
Psychological symptoms differ in severity, persistence and quality from ‘normal’ distress.
Residents with depression may be unhappy about their current situation and speak of little
else than their wish to be ‘done with it’. This expression may be a manifestation of the burden
they feel they are to others, a pervasive loss of interest and pleasure, and/or an overall feeling ofapathy. Depression is frequently associated with suicidal thinking[271] (Level QE) and the agedcare team should be aware of the increased risk of completed suicides among older persons,in particular among older men who have recently been bereaved[272] (Level III-3). Althoughsuicide attempts or requests may seem understandable, they are often an indication of clinicaldepression, and referral for psychological assessment should be made[63] (Level IV).

118 		 Guidelines for a Palliative Approach in Residential Aged Care

7.1.1

Death statements and depression

A comprehensive assessment and appropriate response to a resident’s expression of a desire
for death is vitally important[63] (Level IV). Depression is frequently undiagnosed and should
therefore be considered as a potential reason for ‘desire to die’ statements[63] (Level IV).
Diagnosing depression in people with a terminal illness or in the end stage of the ageing process
can be complicated (see Table 9 for symptoms of depression). An alternative to the Diagnostic
Statisticians Manual (4th ed) (DSM-IV)[273] criteria for depression is available (see table 10) andmay be a useful guide for members of the aged care team who are suitably trained[274] (Level IV).
Physical manifestations of depression may also be useful in screening for depression in RACF
residents. A number of symptoms have been described that may be indicators of depression (seeTable 9). If several of these symptoms are apparent to the aged care team, the resident should bereferred to an appropriate professional (e.g. geriatrician or psychologist).
Table 15: Symptoms of depression — Adaptation from DSM-IV [274]Loss of interest or pleasure

Agitation or retardation

Depressed mood

FatigueSleep disturbanceAltered appetite

Poor pain and symptom control

Flattened mood (lack of expression in situations that
previously had been pleasurable)

Suicidal thoughts

Frequently expressed death desire

Inability to think or concentrate

Recurring thoughts of suicide or deathFeelings of worthlessness, hopelessness or
helplessness, inappropriate guilt, and/or persistent
negativism

Social withdrawal (attempts to remain awayfrom people when previously would engage, noconnection with care givers)

7.1.2

Assessment

It is important to note that no tool currently exists that can assist in distinguishing between
delirium, depression and dementia; therefore, different screening tools are required for each.
Depression can be screened by the use of very brief scales that are suitable for use with residents.
A one-question screening tool has been accepted as an appropriate way of identifying thosepeople requiring a more detailed clinical assessment for depression[274] (Level IV). The tool
found to be most effective was the Mental Health Inventory (1-Item Version; MHI-1)[275]which asks: “How much of the time over the past month have you felt downhearted andsad?”[274] (Level IV). Possible responses range from 1 to 6, as shown below, with a score of 3 orhigher indicating potential depression. The aged care team could incorporate this question into
their plan of care as a simple way of screening residents for depression.

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Table 16: Mental Health Inventory (1-item version)[275]

Question: How much of the time over the past month have you felt downhearted and sad?
Response choices:
All of the time 6

Some of the time 3

Most of the time 5

A little of the time 2

A good bit of the time 4

None of the time 1

It should be noted that the MHI-1 is only recommended for identifying those who require
further assessment for depression; it should not be used in the place of a formal assessment for
depression, such as the Geriatric Depression Scale or the Cornell Scale.
The Geriatric Depression Scale (GDS) is available in two formats: a 30-item scale (GDS-30)[276]
and a 15-item scale (GDS-15).[277] The GDS is an assessment tool to assist in determining
depression for older persons, including those in long-term care. A study of the GDS foundthe use of this scale for screening for depression could increase the frequency of treatment orreferral of people in long-term care by primary care physicians[278] (Level II). A recent study of
the GDS-15 found that the tool was suitable for diagnosing depression in the over 85-yearold population[279] (Level QE). Additionally, the authors recommended setting a low cut-off
point of 2 out of 3 points to provide GPs with a reliable sensitivity for ensuring that people
with clinical depression would not be overlooked. The GDS’s suitability for older persons withcognitive impairment has yet to be determined[279] (Level QE).
The Cornell Scale for Depression in Dementia (CSDD) is a 19-item instrument using
information gathered from an interview with the person with dementia and a caregiver(e.g. family member or staff member).[280] The scale’s items were developed based on a literature
review to determine the experience of depression for people with or without dementia andinformation based on a questionnaire administered to geriatric psychiatrists and other experts inthe field. The scale categorises depression into five content areas:[280]1.

mood-related signs (anxiety, sadness, lack of reactivity to pleasant events, irritability);

2.

behavioural disturbances (agitation, retardation, multiple physical complaints, loss of interest);3.

physical signs (appetite loss, weight loss, lack of energy);

4.

cyclic functioning (mood swings, difficulty falling asleep, multiple awakenings during
sleep, early morning awakenings); and5.

ideational disturbances (suicide, poor self-esteem, pessimism, mood-congruent delusions).

The CSDD was found to be a reliable scale of depressive symptoms among older persons withdementia [281] (Level IV). Additionally, CSDD scores have demonstrated moderate to highcorrelations with clinical diagnoses of major depression for older persons with or without
dementia.[281] However, further analysis of the CSDD found evidence of four factors rather
than the five proposed by the authors of the CSDD[282] (Level IV). These results indicate that
the CSDD sub-scales should be interpreted with some caution until further studies determine

120 		 Guidelines for a Palliative Approach in Residential Aged Carethe factor structure of the CSDD. In the interim, this scale appears preferable to the GDS,
given the reliability of the CSDD for assessing depression in older persons with dementia.
The CSDD and GDS are available as part of a kit called Challenge Depression, which aims to
reduce the level of depression in Australian RACFs. Visit www.dementia.com.au/depression.
htm for further information regarding this kit.

7.1.3

Management

Pharmacological management
The first factor that is generally considered when choosing pharmacological interventions is theresident’s life expectancy[283] (Level EO). According to Martin and Jackson (2000)[283] (Level
EO), residents who are expected to live for more than two months may have time to respond to
antidepressants, such as SSRIs (selective serotonin re-uptake inhibitors). These medications havefewer side effects than other antidepressants and are less sedating.
If a resident’s life expectancy is anticipated to be less than two months, it is suggested that a
psychostimulant will relieve their symptoms quicker than an antidepressant[283,284] (Level EO;
Level IV). Psychostimulants may also stimulate appetite and promote a sense of wellbeing.
Residents with psychomotor slowing, advanced dementia, dysphoric mood, debilitating
weakness or fatigue may also benefit from the ‘energising effect’ of these drugs[285] (Level EO).
Methylphenidate is considered the most appropriate of these for use in a palliative approach[284](Level IV).
Irrespective of which intervention is preferred, psychological changes in residents should
never be dismissed as untreatable or inevitable. Improvements in the resident’s psychologicalstate can be achieved in spite of deteriorating physical functioning. Failing to investigate theresident’s psychological state would deny them appropriate treatment, thus projecting a senseof hopelessness.

Non-pharmacological management
Counselling and psychiatric interventions can improve the psychological wellbeing of residents inthe palliative phase of their ageing or illness. Residents may need an opportunity to verbalise their
feelings, beliefs and regrets about death and dying. Emotional and social supports are importantcharacteristics of intervention techniques. Simply providing a listening ear can be therapeutic.
These types of interventions, combined with assessment and treatment of depression, confusion
and anxiety, are essential components of a palliative approach[64] (Level QE).
Residents and their families should be given an explanation of how the ageing or illness
process is progressing. They may also need to express their feelings without fear of censure
or abandonment. However, a recent study found that the aged care team may have difficulty
determining symptoms of depression, because residents may be reluctant to disclose their
feelings for fear of being labelled a ‘bad’ or ‘weak’ person[263] (Level QE). An open, supportive
environment can promote trust, which could help to overcome this barrier and help theresident’s adjustment process, thus enabling them to move towards accepting their situation.

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Education and training in communication skills for the aged care team could also help toremedy this barrier to open communication. Knowing the resident’s previous personality andpsychological state is helpful in identifying high-risk individuals or those with developing
symptoms. The family’s observations of any recent changes in the resident’s mental state should
also be noted.

7.2 ANXIETY
Anxiety is an arousal state. People experience anxiety in different ways, but the following threeelements are considered to be common symptoms[286] (Level III-3):
1.

A conscious feeling of fear and danger without the ability to identify immediate objective
threats that could account for these feelings;

2.

A pattern of physiological arousal and bodily distress that may include miscellaneous
physical changes and complaints, such as heart palpitations, faintness, feeling of
suffocation, breathlessness, diarrhoea, nausea or vomiting; and3.

A disruption or disorganisation of effective problem-solving and mental control, including
difficulty in thinking clearly and coping effectively with environmental demands.

Anxiety symptoms are considered more stable than depression symptoms and it is believedthat anxiety may be related to the trait of neuroticism[286] (Level III-3). Hence, a resident’s
psychological history should be documented to determine any previous episodes of anxiety.

7.2.1

Assessment

There are various validated assessment tools for screening anxiety. This list provides summaries
of differing findings on the suitability of these tools with either older persons, recipients of apalliative approach, or both:• The Hospital Anxiety and Depression Scale (HADS) was used in a palliative unit forrecognition and treatment of depression and anxiety. The researchers concluded that thoseadministering the HADS needed time and skill to deal with the issues it raised. This wasdue to a finding that an increase in the prescription of antidepressants had occurred andthat depression was being over-diagnosed. This, however, may partly be attributed to the
influence of the scales used[287] (Level IV).
• Visual Analogue Scales (VAS) is a 10-cm linear scale for use with people receiving a palliative
approach. The VAS correlated well with both the depression sub-scale and total score of
the HADS and was found to be quick and easy to complete for most people[288] (Level IV).
However, concerns have been raised regarding the VAS, particularly that people with advanced
dementia have difficulty completing this scale, so its use with this group is not recommended.
• The Hopkins Symptoms Checklist was found to provide many referenced syndromeclassifications to the Diagnostic Statisticians Manual (3rd ed) (DSM-III) when usedwith older persons. Anxiety measures were the most accurate determinates of DSM-III
classifications for mental health disorders[289] (Level QE).

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7.2.2

Management

Non-pharmacological management
The effects of gentle massage on two groups of high-care residents were examined (those
suffering from chronic pain and those with dementia who were exhibiting anxious or agitatedbehaviours)[290] (Level IV). Pain scores declined at the end of each phase, and anxiety scores
declined in two of the three phases. Eighty-four percent of the care assistants reported that theresidents enjoyed receiving tender touch, and 71% thought this type of massage improved theirability to communicate with the residents. The researchers concluded that the aged care teammust be made aware that touch, gentleness, and compassion are integral parts of care.

7.3 CONFUSION
Residents experiencing confusion may appear forgetful, and disoriented to time and place,and exhibit changes in mood or behaviour[265] (Level EO). The two main clinical syndromes
associated with confusion are delirium, which is potentially reversible, and dementia,
which is usually permanent. It can be difficult to discern between confusion, dementia anddelirium; therefore, a comprehensive assessment of a resident undertaken by relevant allied
health care practitioners is preferable.

7.3.1

Assessment

A standardised confusion assessment method is available that enables non-psychiatric clinicians
to detect delirium quickly in older persons[291] (Level III-2). The confusion assessment
instrument consists of nine operationalised criteria from the DSM-III-R. The diagnoses madeby the confusion assessment method were validated against the diagnoses made by psychiatrists.
It was concluded that the confusion assessment method is sensitive, specific, reliable and easy touse for identifying delirium and could be appropriate for suitably qualified members of the agedcare team to use.[291]Cacchione (2002)[292] (Level III-2) examined four acute confusion instruments within the longterm care setting. The four instruments were evaluated against Mini Mental State Examination(MMSE), the GDS, and the DSM-IV. The Visual Analog Scale for Acute Confusion (VAS-AC)
was found to be most appropriate for general screening in the aged care setting.
An Australian survey considered the effectiveness of Victorian aged care assessment teams (ACATs)
for the management of people with dementia[293] (Level IV). The researchers found that ACATs
were effective in differentiating between clients with dementia and those who were disoriented.
The following considerations are used by ACATs to successfully differentiate between a personwith cognitive impairment and a person with another psychiatric problem:[293]• The primary diagnosis is recorded in broad categories only. The most common primary
diagnosis indicating a psychogeriatric problem is dementia.
• Orientation to time and place, mobility and continence is recorded in detail. Each typeof orientation is measured by four levels of disability: ‘always’ and ‘often’ disoriented areconsidered to identify a person with a cognitive impairment, whereas ‘sometimes’ or ‘never’disoriented identify those with another psychiatric problem.

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ACATs also use comprehensive assessment to screen for cognitive impairments, particularly
dementia, and other mental illnesses, such as depression. This assessment includes the MMSE
to screen for dementia, accompanied by a detailed history.[293] The team also includes carers,
when available, to assist in the process of assessment and to provide history and care preferences
for the person being assessed.

7.4 DELIRIUM
Delirium refers to a clouding of consciousness, which is primarily “characterised by disorderedattention, thinking, and perception”[294, p. 696] (Level IV). The severity of the delirium fluctuatesand can worsen after dark.[295] Most prevalence studies of delirium have been conducted in
hospitals with medically ill people, in whom the prevalence rate was about 25%[295] (Level EO).
Delirium may involve paranoid ideas, which may manifest as an idea that the food has beenpoisoned, for example. Residents with delirium may be noisy, demanding or aggressive, which
may upset or harm others. Family members or care providers may report a rapid and drastic
decline in the resident’s functioning, which is useful in distinguishing delirium from dementia.

7.4.1

Assessment

One study explored the course of delirium in 193 older persons in acute care and found thatthe symptoms of delirium (e.g. inattention, disorientation, and impaired memory) were present
up to 12 months following diagnoses for older persons with or without dementia[294] (Level
IV). Despite this similarity, the researchers’ reported that the duration of the first episodeof delirium was longer for those with dementia compared with those who had no cognitive
impairment at baseline measurements. Additionally, a longer initial episode of delirium waspredictive of a worse prognosis such as long-term functional and cognitive disabilities.
Although, the focus of the study was an acute care setting, the findings are likely transferable
to the aged care context.[294] For example, the researchers’ reported difficulty in distinguishingdelirium from dementia with many participants diagnosed as having both disorders, whichis the same issue that aged care team members have in Australian RACFs.[293] Therefore, athorough assessment of symptoms is required, which includes consideration of the persistenceof symptoms (e.g. inattention, disorientation, and impaired memory)[294] (Level IV). Those
residents with dementia are likely to have these three symptoms plus a gradual decline in theirability to undertake the activities of daily living. Those residents with delirium while havethe same three symptoms are more likely to have a sudden deterioration in their capacity tocomplete the activities of daily living[294] (Level IV).
The following table provides some indicators to assist aged care team members in distinguishingdelirium from dementia. This table is provided as a guide only and it is recommended that anexpert in psychiatric disorders such as a geriatrician, geropsychologist or a psycho-geriatrician isconsulted for diagnostic purposes.

124 		 Guidelines for a Palliative Approach in Residential Aged Care

Table 17: Distinguishing delirium from dementia

Indicators

Delirium

Dementia

Onset

Acute or subacute

Insidious

CourseFluctuating, usually resolves over days
to weeks

Progressive*Activities of daily living (ADLs)

Gradual decline in ability to do ADLs

Sudden deterioration inability to do ADLs

Conscious level

Often impaired, can fluctuate rapidly

Clear until later stages

Cognitive defects

Poor short term memory, poor attention
span

Poor short term memory,
attention less affected until
severeHallucinations

Common, especially visual

Often absent

Delusions

Fleeting, non-systematised

Often absent

Psychomotor activity

Increased, reduced, or unpredictable

Can be normal

British Medical Journal, 2002, 325 (7365), 644–647, with permission from the BMJ PublishingGroup[295] * This indicator was added to the table developed by Brown (2002), and it is based upon
the work of McCusker and Colleagues (2003)[294]7.4.2Management

A systematic review of the effectiveness of prevention interventions for delirium in hospitalised
patients found that most interventions involved psychiatric or medical assessments, andsupport education or reorientation, which had little effect for older persons due to comorbid
disorders[296] (Level II).
Prescribed drugs and acute infections are perhaps the most common cause of delirium,
particularly in older persons[295] (Level EO). Many prescribed drugs that can induce delirium
are sedating drugs such as benzodiazepines and narcotic analgesics. Precipitating causes alsoneed to be considered. These include the person’s age, co-morbid physical illness or dementia,
and environmental factors (such as visual or hearing impairment, social deprivation, and being
moved to a new environment)[295](Level EO). Good management of delirium requires[294,295](Level IV; Level EO):
• identifying and treating the underlying causes;• providing environmental and supportive measures;• prescribing drugs aimed at managing symptoms; and• following-up with a regular clinical review.

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7.5 DEMENTIA (PSYCHOLOGICAL ASPECTS)
Dementia is a syndrome of progressively deteriorating cognitive function associated with anunderlying disease process such as Alzheimer’s disease. A resident who exhibits a diminishedability to communicate and comprehend requires specialised psychological care and support(see Chapter 5, ‘Advanced dementia’, for more information). This should include the family
as appropriate, and should be instituted as part of a palliative approach. For the resident withdementia, psychological support will include alternative communication strategies. For thefamily, psychological support will address issues such as an ongoing sense of loss and difficultyin finding a caring role[30,297] (Level QE; Level QE). (See Chapters 8, ‘Family support’, and 9,‘Social support, intimacy and sexuality’.)

7.5.1 Assessment
There are various assessment tools available for determining a resident’s level of cognitive
impairment. One that is frequently used and recommended is the MMSE.[298] Nurses generally
undertake the routine administration of the MMSE in palliative settings and it is frequently
used in aged care.
The aged care team needs to be aware of the limitations of the MMSE in residential aged caresettings or palliative care settings, because the usual cut-off scores for mental competence (i.e.
>21–22) for interpreting the MMSE may not be appropriate. For example, a recent study
considered the question: “Does not knowing where I am mean I don’t know what I like?”[299](Level IV). The authors found that a high proportion of older persons in RACFs could answer
questions on their quality of life, even when significant cognitive defects were present. Manyof their research participants were considered significantly cognitively impaired, with morethan half scoring 17 or below on the MMSE, yet the residents were still able to convincingly
answer the majority of questions posed. This finding requires further research, but it does bear
important consideration when working with residents with dementia, particularly the need forongoing communication with them regarding their preferences.

Behavioural disturbances
There is a wide variation in rates of behavioural and psychological symptoms of dementia
reported in RACFs[269] (Level QE). One study found that over 90% of residents exhibitedat least one behavioural disturbance. Specifically, there was evidence of psychosis in 60%,
depressed mood in 42% and activity disturbance or aggression in 82% of residents[269] (Level
QE). More functionally impaired residents with a diagnosis of psychosis had higher behaviouraland psychological symptom rates. The researchers concluded that behavioural disturbances are
frequently associated with psychosis and / or depression. Unfortunately, there is little evidence
regarding assessment and management. It is suggested that the need for psychogeriatric services
for RACFs is essential in aiding the aged care team in dealing with such residents.

7.5.2 Management
Psychological/psychiatric intervention is recommended when the resident presents with various
psychological symptoms that have lasted longer than a few weeks[265] (Level EO). However, it

126 		 Guidelines for a Palliative Approach in Residential Aged Careis recognised that in many rural and remote areas it is difficult to access a geriatrician, psychogeriatrician, or psychologist on a regular basis to complete assessments and management plans
for residents. In such situations the use of Telemedicine, Telehealth or other forms of electronic
communication could overcome such a barrier, as could the involvement of a GP to complete
the assessment.
In instances of psychological distress, referral to a palliative team may be beneficial because of
the team’s expertise in assessment and care of people with psychological changes during final
illnesses. The literature demonstrates the existence of this expertise in the area of depression,anxiety, agitation and loss[271,300,301] (Level QE; Level QE; Level EO).
Guideline:

Psychological Support
Ref No.

Evidence level

Depression
50.

The use of the Geriatric Depression Scale to screen residents for depression
can increase the frequency with which treatment is provided for thisdisorder by prescription or via referral to appropriate health care providers.

278

II

51.

Suicide attempts or requests for a hastened death are often an indicationof clinical depression. An active response that addresses depression,
hopelessness, and social support can improve the resident’s wellbeing
and reduce the desire for a hastened death.

63

IV

290

IV

291, 294

III-2

Anxiety52.

Gentle massage can reduce anxiety levels or agitated behaviours forresidents with chronic pain and / or dementia.

Delirium53.

A thorough assessment of the symptoms of delirium is required, which
includes consideration of the persistence of symptoms (e.g. inattention,
disorientation, and impaired memory) to accurately and quickly detectdelirium in older persons, which increases residents’ frequency oftreatment and referral.

IV

Dementia
54.

Many residents can answer questions regarding their quality of life
even when significant symptoms of dementia are present. Therefore, aresident’s preferences for quality of life concerns should still be sought
and incorporated in decision-making to improve their satisfaction withthe care they receive.

299

IV

271, 300

QE

Psychological distress
55.

Incorporating the use of a specialised palliative team who havesome expertise in the assessment and care of those with depression,agitation, loss and / or anxiety is beneficial for residents who require a
palliative approach.

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CHAPTER 8FAMILY SUPPORTThe palliative approach generally refers to the family as the ‘unit of care’. However, such aview is often tied to the more traditional western society view of the family as a nuclear entity
based on biological or marital ties. Modern society does not always reflect this traditionalview of the family and, therefore, the aged care team’s notions of ‘family’ must be muchbroader and more inclusive.

8.1 WHAT IS A FAMILY?
A family member can be considered as any person who is part of the central core in the support
network of an individual, including non-family carers. Palliative Care Australia (1999)[302] uses
the Canadian Palliative Care Association (1998)[303] definition of family:“… those closest to the patient in knowledge, care and affection. This includes the biologicalfamily, the family of acquisition (related by marriage/contract), and the family of choice andfriends (not related biologically, by marriage/contract.” [302, p. 10]
Based on this definition, family could include carers, friends, neighbours or the aged careteam; this description extends the boundaries beyond biological and legal relationships. Bothdefinitions highlight that a person considered as family by a resident might not be a relation bybirth or marriage.

8.2 FAMILIES AND A PALLIATIVE APPROACH
For some family members this may be their first experience of a palliative approach or theirfirst experience of impending death. They need an opportunity to have privacy to attend tosuch matters as:• treatment decisions;• family members’ history; and• tensions that may surface at this time (e.g. relationships, financial concerns).
The family will also require education on how a palliative approach works, and an explanationof the signs of impending death, to reduce the family’s fears.
Research undertaken to evaluate the effectiveness of a palliative approach has suggested that apalliative approach may be at least of equal value and may often be of more value to the family
than to the person who is dying[304] (Level III-2). The evidence suggests that families value not
only technically competent physical care, but also regard emotionally sensitive care as especially

Guidelines for a Palliative Approach in Residential Aged Care129

important[305] (Level QE). Families appreciate good communication with those who provide
care to their family member, affirmation from the care providers that the families input isvalued, and permission from care providers for families to withdraw at times from the caregiving situation[306] (Level QE). Families describe the importance of time with aged care team,being kept informed about the resident’s condition, and being treated as if they have an active
and equal role in the care planning process[32,77] (Level IV; Level QE).
Specific palliative approach interventions found to be helpful to families include:• access to 24-hour medical and nursing advice (in rural and remote areas a 24-hour service
is not always possible to maintain, and that support may be available through metropolitan
based services after hours)[307] (Level QE);
• use of family conferences to obtain and share information[308,309] (Level III-2; Level QE);
• attention by the aged care team to the resident as a ‘whole person’[310] (Level QE); and• competent pain management and comfort measures[308] (Level III-2).
The family’s trust in the aged care team is essential, helping them build a satisfactory
partnership with the team[311] (Level QE). By entering into a care-giving partnership with theaged care team, some family members are able to express their love for the resident throughcontributing to their care[312,313] (Level QE; Level QE). Therefore, if a resident is admitted
towards the end of their illness trajectory or ageing process, the aged care team needs to help
the family build a satisfactory partnership as members of the team[36] (Level QE). To build thistrust and fulfil families’ needs, extra time and good communication skills are required from all
the aged care team, including medical practitioners[309] (Level QE). The direct involvement offamilies at all stages of the resident’s care is preferable, including prior to admission.
Residents receiving a palliative approach need emotional and spiritual support to accept thereality of their life-limiting condition, as do the family members. Staff members sometimes
become surrogate family members and may also need support[314] (Level QE).
Family members who have had a loved one die in a palliative care setting appear to accept
the loss and adapt to their new life situation reasonably well[306] (Level QE). However, thisadjustment is dependent on the relationship with the person who is dying and the age of both
the relative and the individual receiving a palliative approach. Therefore, it is important to
prepare friends and relatives of an impending death so that they can cope with the loss more
successfully.[315] Parkes (1999)[315] (Level EO) suggests that worrying and grieving are important
processes to be worked through before and after a death and should not be ignored out of fearof upsetting a person. He argues that the process of worrying is how people prepare for an
upcoming loss and is dependent on receiving clear information.
If the resident has been recently admitted, particularly from a palliative care unit, hospital or
hospice, the effect of the transfer on the resident and their family needs to be considered by
the aged care team[36,311,316] (Level QE; Level QE; Level QE). One study found that family andcarers of recently transferred residents perceived that the resident did not adjust to the moveand that this resulted in additional trauma for everyone[36] (Level QE). Some families perceived
the transfer of their relative from a hospice to an RACF as a traumatic experience. In someinstances, the level of subsequent care by the aged care team for the resident and their family
negated these initial feelings[36] (Level QE).

130 		 Guidelines for a Palliative Approach in Residential Aged Care

Depression was also found to occur for wives following the placement of their husbands in an
RACF[317,318] (Level QE; Level QE). Such a transition was likely to involve stress, loneliness,
identity changes, ambivalence, and a sense of loss and grief (e.g. guilt, anger)[318](Level QE) for
residents, family and carers. However, if residents and their family were involved in decision
making[319] (Level QE), and were supported pre- and post-transfer, they reported higher levelsof satisfaction[316](Level QE).
Recognition by the aged care team that family members have contributed significantly to theresident’s wellbeing prior to admission may also help build a positive partnership[307] (Level
QE). Similarly, giving the family the option of having an ongoing care-giving role can also help
them cope with any separation anxiety they might feel and can also provide positive benefits fortheir family member with dementia[319] (Level QE). Keeping families informed and responding
to any dissatisfaction they express about the care being given may reduce the complexity of thefamily’s grief reaction and guilt over the resident’s admission to the RACF[307] (Level QE).

8.3 DOCUMENTING FAMILY RELATIONSHIPS
When the aged care team has an understanding of the social relationships and functioning of afamily they are better able to provide appropriate family care[310] (Level QE). This can be aided
by such tools as a genogram (see Appendix K) or an ecomap (see Appendix L), which help
visually document the resident’s significant relationships. The genogram usually includes three
generations and covers the basic family structure, information on individual family members
and family relationships. Discussion while constructing a genogram typically focuses on family
illnesses, deaths, stress, and coping mechanisms of the resident and the family[320] (Level QE).
The ecomap extends beyond the genogram to include formal and informal social supports. It
can therefore help in assisting the aged care team to understand the broader experience of loss
and grief for those whose friend or relative is admitted to residential care.
An ecomap or genogram can also include information such as the type of participationindividual family members wish to have in the care of the resident. Family members can raiseat this time their need for training so they can be involved in daily activities such as feeding,particularly if the resident has swallowing difficulties. It is important to remember, however,that not all families wish to be involved in the ongoing care of the resident and this should be
accepted and respected by the aged care team in a non-judgmental manner, as is illustrated in
the following story.

Vignette 9: Joan’s story
Joan always appeared aloof and distant on the infrequent visits to her husband. Now that
Joan’s husband Tom was dying, the aged care team wanted to involve Joan by encouraging
her to visit more often and to assist with his care. Joan felt there was an expectation
placed upon her, until she explained the situation to a nurse she trusted: “I know I may
seem uncaring but I’m exhausted from looking after him 24 hours a day at home. I just
can’t do any more. We haven’t been a close couple for many years and I find it such a
relief to have some life of my own at last”. When this explanation was conveyed to othermembers of the care team, it reinforced the concept of individualised care, grounded in acomprehensive assessment of family processes, expectations and goals.

Guidelines for a Palliative Approach in Residential Aged Care131

8.4 FAMILY INVOLVEMENT
The role of the family in decision-making centres on the need for individualised care andproviding a link to the community. The family’s role is also important in providing relevant
personal history and information about the resident’s preferences[77,297,305] (Level QE; Level
QE; Level QE). The role of family members as advocates for high-care residents may belimited by the weak position they may have in the organisation and by the complexity of
their relationships with the aged care team[305,321] (Level QE; Level QE). It might be beneficial
for members of the team to encourage families to voice any concerns they may have and toencourage their participation in the resident’s care, if this does not already occur. The following
story illustrates how the aged care team can initiate family member involvement in theirrelative’s care.

Vignette 10: Doreen’s story
Doreen faithfully visited her sister, Vera, for several hours each day. She was usually asked
to leave the bedside when the aged care team were in attendance until a particularly
intuitive nurse asked, “Doreen would you like to assist in Vera’s care? Is there anything
particular you would like to do for her?”, “Yes”, came the immediate response. “I would
like to help make her comfortable. I could even wash her …You see … when I was about
eight years old and Vera would have been about fifteen, I was very ill with a high fever.
I remember Vera sponging me and it seemed at the time she helped save my life. I can’t
do much for Vera now that she’s dying but I would like to repay her in some small way.”
Doreen was pleased to be included in the care team, massaging Vera’s limbs with fragrant
oil and assisting the nursing staff with other care when appropriate. When Vera diedthe following entry was noted in the record of care: “Vera’s sister wanted to assist by
washing Vera’s body and dressing her in a favourite nightgown.” Doreen expressed herappreciation for this involvement, stating it had assisted her in closing the final chapter inthe relationship with her sister, to whom she owed so much.

In the context of aged care, the family may play a particularly important role in assisting withmanaging symptom distress, communicating with the resident, and assisting with their physicalcare needs[322] (Level III-2). Families benefit from emotional support and an opportunity to
discuss their concerns about the resident’s illness or ageing process[107] (Level QE). Holding
a family conference can facilitate this support and information exchange[107,308,309] (Level
QE; Level III-2; Level QE). The conference forum enables families to be involved, as well as
enabling them to provide an assessment of their needs should they choose. This involvement
and assessment is considered an essential element of a palliative approach[313] (Level QE), yetfamilies are often unprepared for this role. Therefore, support to the families, providing training
where required and enabling their involvement in care, may be beneficial. This support does nothave to be provided by the aged care team only. It is equally appropriate for the aged care teamto make referrals to pastoral care workers and social workers (where available) when support for
the family is identified and required[323] (Level QE).
Health deterioration and death of the resident may also impact upon the physical andemotional health of family members[304,324] (Level III-2; Level III-3). Family caregivers may also
be older and have pre-existing health problems of their own. There is some evidence to indicatethat spouses and family members who are non-English speaking may experience more burden132 		 Guidelines for a Palliative Approach in Residential Aged Carethan other family members[325] (Level QE). The caregiver burden has been found to be heaviest
on spouses, followed by daughters, other relatives and then sons[326] (Level IV). Some spouses,
especially those of residents with advanced dementia, report feeling like a ‘married widow’[317](Level QE) and the term ‘quasi-widowhood’ is used in the gerontology literature[318] (Level
QE). Quasi widowhood captures the dilemma for this group of women: still married yet living
separately from their husbands and in many ways without the partner they related to previously.
A number of studies report the difficulties families experience when coping with changes
in the mental status of their relative[321,327] (Level QE; Level QE). Management of agitateddelirium is a frequent source of conflict between families and nurses[23,24] (Level QE; Level
QE). Family members of confused or unconscious people may have higher expectations ofnurses than family members of people who are lucid[308,328] (Level III-2; Level III-2). The
higher the variance between expectations and perceptions, the poorer the family functioning
in the bereavement period will be[328] (Level III-2). These findings may be particularly relevant
to RACFs, where the incidence of residents with advanced dementia is high. Families who
witness a difficult or poorly managed death may experience more grief, guilt and regret in the
bereavement period[329] (Level IV). For example, poorly managed pain or shortness of breath isextremely distressing for family members to witness and they may feel guilt later if they believethat the resident suffered a difficult death.
These findings highlight the necessity for the aged care team in RACFs to consider the family’s
needs so that the capabilities and resources of all members are considered appropriately[330](Level EO). Additional management strategies could involve a member of the multidisciplinary
team (e.g. social worker or chaplain/pastoral care worker) identifying family members who
have difficulty coping and instigate appropriate social support[317,323] (Level QE; Level QE). Inhouse support could also be provided via support group meetings. Family members who attend
support group meetings seem to have lower burden levels, possibly because they receive social
support and information[331] (Level IV).
Guideline:

Family Support
Ref No.

Evidence level

56.

Involving the family to assist with symptom distress, communicating
and assisting with the physical care needs of the resident can
improve the aged care team members’ relationship with the family.

322
313

III-2
QE

57.

Health deterioration and the death of the resident may impact
upon the physical and emotional health of family members. Family
members’ depression and health problems should, therefore, be
informally monitored by the aged care team and, where appropriate,
support provided to offset the effects of caregiving stress.

304
324
309

III-2
III-3
QE

58.

Families appreciate good communication with the aged care team,affirmation that their input is valued, and permission to withdraw attimes from the caregiving situation. When these needs are addressedfamilies experience increased satisfaction with care.

306, 307,
325

QE

59.

Family conferences can provide emotional support to family members
and an opportunity to discuss concerns about the resident’s illness/ ageing process. Such discussion benefits families and ultimately
improves the quality of life for the resident.

308, 322
107, 313

III-2
QE

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133

CHAPTER 9

SOCIAL SUPPORT, INTIMACYAND SEXUALITY

A palliative approach takes into account the social needs of the resident, such as the need forsocial support, and also considers issues of intimacy and sexuality.

9.1 SOCIAL ISOLATION AND SOCIAL SUPPORT
Although many RACFs provide a caring, comfortable environment, residents may still
experience feelings of social isolation during this final phase of their life. Social isolation isconsidered to occur when a person has a limited network of family and friends[332] (Level IV).
Social isolation in older persons has been found to lead to poorer psychological wellbeing, suchas depression, and diminished functional health[332] (Level IV). However, it has been suggested
that it is not merely the amount of contact that is predictive of these poor health outcomes;
rather, it is the individual’s perception, appraisal and interpretation of that contact that are mostimportant[333] (Level IV).
More recently, Fratiglioni and colleagues (2000)[333] (Level IV) found that it was not the
number of relationships but the quality of those relationships that determined feelings ofisolation. The authors also found that an extensive social network, for instance a network that
included satisfying social contact, appeared to protect against the development of dementia.
A poor or limited social network was found to increase the risk of dementia by 60%. Fratiglioni
and colleagues surmised that extensive social networks might delay the onset of dementia
by providing emotional and intellectual stimulation and practical support[333] (Level IV).
Further research is required to test this hypothesis. However, the evidence to date suggests that
individuals who have limited social networks are at greater risk of poorer outcomes.

9.1.1 Assessment
To help maintain the resident’s links with their social network, it may be beneficial to assess
their level of social support[332] (Level IV). Determining a resident’s prior social history canbe helpful in understanding their social network. A Genogram has been found to be usefulin facilitating discussion with residents and/or their families[320,334] (Level QE; Level EO) (seeSection 8.3, ‘Documenting family relationships’, and Appendix K). Mapping a network ofsupport via the Genogram can vary in the time it takes, depending on factors such as individual
differences and cultural diversity. An ongoing commitment to updating the Genogram ensuresthat it remains current.

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135

9.1.2

Management

The aged care team needs to provide opportunities for residents to maintain and begin newsocial relationships. Determining pre-existing social supports and promoting social integrationof residents can reduce social isolation. It is recognised however, that the aged care team may
not have the time to assess a resident’s social supports. A referral to a social worker or pastoralcare worker may help to ensure the resident’s needs are addressed. Volunteers can also play arole in helping to provide social support for residents receiving a palliative approach.
It is important to remember that not all residents perceive that they are lacking in social support
and as a consequence may not wish to participate in social activities. Their wishes should be
respected first and foremost. It is also important to acknowledge that some residents may consider
the aged care team as family (and vice versa), especially those with whom they have establishedmeaningful relationships. Research supports the occurrence of surrogate family bonds by staff
members in RACFs, particularly for those facilities in rural locations[314] (Level QE).

9.2 INTIMACY AND SEXUALITY
The following WHO (2002)[335] definition of sexuality provides a basis for understanding theimportance of sexuality for the resident:“Sexuality is a central aspect of being human throughout life and encompasses sex, gender
identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality
is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours,
practices, roles and relationships… Sexuality is influenced by the interaction of biological,
psychological, social, economic, political, cultural, ethical, legal, historical and religious andspiritual factors. Sexual health requires a positive and respectful approach to sexuality and sexual
relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of
coercion, discrimination and violence. For sexual health to be attained and maintained, thesexual rights of all persons must be respected, protected and fulfilled.”
Intimacy and sexuality are basic human needs that are often neglected in discussions about
the wellbeing of people receiving a palliative approach, particularly those in RACFs. However,sexuality does not disappear as a person ages. A person’s ability to express their sexuality
and have this need recognised with understanding and care may be an important factor inenhancing a person’s wellbeing. It is easy to assume that residents requiring palliation would
have other more important things than sexuality with which to be concerned, but this is
not always the case. An individual’s needs in this area require the aged care team to be nonjudgmental and comfortable in acknowledging and discussing issues of sexuality.
Residents living in the same care facility are essentially compelled to live together until their
death. Therefore, it should not be surprising to find that intimate relationships are sometimes
formed. Residents who form relationships may be content to simply enjoy talking andparticipating in activities together. Companionship may be all that is sought and needed.
However, there may also be a desire to express mutual affection in physical ways. Therefore, theaged care team needs to be aware of residents’ requirements regarding intimacy and sexuality.
For instance, residents need to have appropriate privacy to ensure their intimacy needs are met.

136 		 Guidelines for a Palliative Approach in Residential Aged Care

Rather than denying the existence of residents’ intimacy and sexuality needs, the aged care teamis encouraged to acknowledge the legitimacy of such needs[336,337] (Level QE; Level QE).
Acknowledging the importance of touch is also important for both the aged care team andresidents[338] (Level IV). If residents experience touch primarily through routine handlingprocedures they may perceive touch in a negative way (even though it is not the intention of
the aged care team to cause pain or discomfort); they may, therefore, miss opportunities toexperience touch in a positive way. Access to massage therapists could help to meet a resident’s
need for caring and gentle touch. However, family might also be able to fulfil this role.
In a study of institutionalised older persons and gerontology nurses covering numerous topics,
including female sexuality, Nay found that older women longed for closeness, touch andintimacy but were often afraid to reach out to other women in this way[336] (Level QE). Due toa loss of control over much of their lives, the only pleasure available to them was self-pleasuring
and fantasy, but guilt, lack of privacy, and fear of being ‘caught’ negated these options. Nay
also found that gerontology nurses who held ageist views of older women’s sexuality were notproviding holistic care. Until such ageist views are changed, the author considered that it was
not possible to provide care aimed at maximising potential, independence and control.[336]In another study of older female residents, Butts (2001)[338] (Level IV) found that comfort
touch (i.e. back rub, massage, hand holding, a friendly hug) improved residents’ perceptionsof themselves. These perceptions included self-esteem, wellbeing and social processes, healthstatus, life satisfaction, self-actualisation, faith and belief. Butts concluded that nurses in
RACFs could enhance residents’ sense of wellbeing and self-regard through comfort touch.
Similar findings resulted when tender touch massage was trialled with residents with reductions
noted in pain scores and improved communication between aged care team members andresidents[290] (Level IV).

9.2.1

Assessment

The few studies of sexuality in long-term care residents that have been conducted suggest that
although sexuality is important for older people, several barriers exist that affect sexuality being
expressed such as poor self-image, poor health status, communication difficulties with careproviders, lack of appropriate or adequate information, and limited opportunities due to lack ofpartners, living arrangements and age-related changes[339–341] (Level QE; Level QE; Level QE).
To ensure appropriate support for residents’ sexuality and intimacy needs, aged care teammembers should first assess the resident’s sexual and intimacy needs and concerns[336,337] (Level
QE; Level QE). Such an assessment should also include consideration of the resident’s privacy
and comfort[341] (Level QE).
The PLISSIT model[342] has been recommended by various experts as an appropriate method
for assessing older person’s sexuality issues.[343–345] The PLISSIT model has four components(the capitalised letters for each component form the acronym PLISSIT) that are described in
the following table.

Guidelines for a Palliative Approach in Residential Aged Care137

Table 18: The PLISSIT Model[342]Abbreviation

Level of
Information

P

Permission

Aim of the level
•
•
•
•

•
LI

LimitedInformation

•
•

SS

Specific
Suggestions

•

•

IT

Intensive
Therapy•

To obtain permission from the resident
to discuss or deny sexual activity.
To enhance communication about
concerns, feelings and perceptions
To answer questions regarding agerelated changes
To reassure the resident that his /her sexual activities and feelings arenormal. Sexual behaviours that are
inappropriate should not be endorsed
To encourage the acceptance of theresident’s sexuality.

Example question
•
•
•

•

Are you sexually active?
Can you tell me how you
express your sexuality?
Do you have any sexual
difficulties or concernsthat you were wondering
about?
How would you rate yoursex life now on a scale of
1 to 10 with 1 being thevery lowest?

To provide relevant factual information •about sexual concerns, problems or
issues.
To provide knowledge, change negative •attitudes and refute sexual myths; forexample, sexual activity is not important
to older people who are frail.
•

Where have you got yoursexual information from(e.g. TV, magazines)?
What do you think
could make your sex life
better?
Would you like more
information about
sexuality?

To provide appropriate supports or•
behavioural or therapeutic interventions
that assists the resident to overcome alimited or short-term problem.
To provide interventions that are
individualised and culturally appropriate
to the resident’s specific needs.
These interventions should be readily
accessible to aged care team members.

Do you experience any
symptoms of discomfort
before, during or after
sexual activity thatconcerns you?

Referral to resolve problems that are•complex or emotional and whichinterfere with the resident’s sexual
expression such as long-term depression.

Would you be willing tosee someone qualified
to help you with yourfeelings of guilt?

The PLISSIT model is not a diagnostic tool, but a method of assessment that assists indetermining appropriate interventions[343] (Level EO). Such interventions may include
referral to an appropriate allied health practitioner such as a social worker, should the agedcare team member feel that more in-depth information or counselling is required (based on
the completion of the first three steps). While the tool is helpful in providing an assessmentof the resident’s sexual needs or issues, its reliance on self-report requires that the resident is
cognitively intact; thus the tool may not be appropriate for many residents. However, Davies
and Colleagues (1998)[346](Level EO) have suggested that the tool can be used with the partnersof resident’s with Alzheimer’s Disease. Intervention studies are required to determine whether
the PLISSIT model is an appropriate tool for assessing the sexuality and intimacy needs ofresidents, particularly those with advanced dementia who would likely require a proxy member
such as family to be involved in the assessment.

138 		 Guidelines for a Palliative Approach in Residential Aged Care

9.2.2

Management

Imaginative programming and provision of leisure pursuits in RACFs leads to many andvarious opportunities for social contact between the aged care team, residents and families, as
illustrated by the following story.

Vignette 11: The masquerade ball
It was the evening of the masquerade ball. The facility’s lounge was a blaze of colour, themusicians were playing and the wheelchair dancing commenced. Ethel and Doris weresitting together, their respective husbands too ill and frail to join the festivities. Ethel andDoris, each in her early 80s, visited their husbands daily, returning to their empty homes,
experiencing the emotional and physical impact of ‘pre-widowhood’. “Would you like todance?” one of the aged care team asked Ethel. “Who, me?” Ethel replied, overcome bysurprise. Linking arms, staff member and relative danced to the old tunes, Ethel flushedwith excitement and stimulated by her memories. “Do you know, Fred and I used to go
dancing every Saturday night? Since his stroke, we’ve never even been able to embrace.
I think that’s the first time anyone has put their arms around me for months. Thanks somuch.” Doris plucked up courage to join hands with a male resident in a wheelchair. Joe,
usually passive and uncommunicative, tapped his feet as Doris twirled him around, daring
to give him a hug at the end. “Thanks for the dance”, she said. Joe seemed to grow tallerand straighter in his chair, beaming a rare smile.

Although there needs to be a positive acceptance of residents’ need for intimacy and sexuality, it
should also be acknowledged that any coercive or unsafe behaviours are unacceptable. Measuresneed to be taken to ensure the protection of any resident who is deemed vulnerable on thisbasis. Similarly, cases of hyper-sexuality should also be addressed immediately for the sake of
all concerned. For example, public masturbation is unacceptable because it can affront otherresidents’ sense of dignity; therefore, any resident wishing to engage in this activity should bedirected to their own room (if private) or to a room designated for private purposes. The agedcare team needs to acknowledge that even behaviour that is unacceptable is driven by someunmet need. The challenge is to seek to understand the message in order to help the resident tofulfil this need in acceptable ways.
Although companionship and intimacy between two residents may appear benign at firstglance, these relationships may be objectionable to their spouses or adult children[337] (Level
QE). Researchers found that residents and spouses were less tolerant than staff of residents
masturbating, engaging in sexual relationships, viewing sexual materials, and making sexualapproaches to staff.[337] Privacy was the primary determinant of appropriateness for behaviours
for all groups. Staff and spouses were more likely than residents to endorse counselling for
behaviours perceived as inappropriate.
It would appear that any form of intimacy between residents may be problematic.[341] A simple
problem-solving framework offers a process for addressing these types of concerns:
1.

Describe and document the behaviour in objective terms. Then ask “Is this really aproblem and, if so, for whom?” If it is a problem that exists for a resident, the aged careteam, family members or the facility then further assessment is required to identify thetriggers of the problem or the real issue; and2.

Develop a plan of care to be implemented and evaluate it to determine its effectiveness.
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139

Advocacy for residents should be foremost during this process. Therefore, a great deal of
education and counselling of the aged care team, families and other residents may be required
to assist them in accepting the need for residents to express intimacy and sexuality[339,345,347](Level QE; Level EO; Level EO). Members of the aged care team invariably project their own
sense of personal morality in these situations and thus their spiritual and cultural standards may
be challenged[337] (Level QE). The complex issues of intimacy and sexuality should be included
in staff orientation programs and in ongoing education and training programs for the aged careteam[341] (Level QE). Members of the aged care team may also need to air their concerns aboutclose relationships among residents, and a process to facilitate this discussion should be available
as required. Residents and families are generally left out of training programs; families who haveconcerns about these issues deserve an opportunity to discuss their feelings.

9.3 Confidentiality
Although most members of the aged care team are trained in the importance of confidentiality
throughout their various careers, issues of sexuality require an additional reminder ofconfidentiality requirements[341] (Level QE). It is normal practice for a staff member to sharewith their co-workers information about the resident’s care. Although this information-sharing
is valuable in promoting teamwork within a palliative approach, discretion is required whenit comes to sharing information with colleagues about a resident’s intimacy and sexuality
needs[341] (Level QE). Two key questions to ask before sharing such confidences are:1)

Do I need to document this?

2)

Do I need to tell my colleagues this information?

This process should prevent any unnecessary disclosures, thereby maintaining the resident’s dignity.
Consideration of residents’ sexuality should be a routine component of care; however, inpractice it is often neglected[341] (Level QE). There may be an assumption that as the resident
is receiving a palliative approach their sexuality needs are not important. Although this may
be the case, the aged care team needs to be aware of any cues regarding needs for intimacy orsexuality from residents and to facilitate support for these needs as appropriate.

140 		 Guidelines for a Palliative Approach in Residential Aged Care

Guideline:

Social Support, Intimacy and Sexuality
Ref No.

Evidencelevel

Social Support
60.

A lack of social support may lead to deteriorating psychological wellbeing,
depression, and diminished functional health. Therefore, a thoroughassessment of the resident’s social network is required, including theresident’s perception, appraisal and interpretation of the contact that ismost important to them. Appropriate interventions can then be undertakenwith a view to arresting / improving the resident’s condition.

332, 333

IV

290, 338

IV

336

QE

336, 337,

QE

Intimacy61.

The use of comfort touch (e.g. massage, hand-holding) by the aged careteam can enhance residents’ sense of well-being and self-regard, improve
communication between aged care team members and residents anddecrease residents’ levels of pain.

Sexuality
62.

Aged care teams who have received ongoing education regarding theimportance of residents’ intimacy and sexuality needs and who are
discrete when sharing such information with their colleagues, provide
residents with more holistic care; thereby improving residents’ well-being.

341

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141

CHAPTER 10

ABORIGINAL AND TORRESSTRAIT ISLANDER ISSUES

The values underpinning both a palliative approach and aged care in Australia are strongly
grounded in the non-Indigenous culture that dominates health and social services. Meetingthe needs of Indigenous Australians requires that non-Indigenous Australian controlled RACFs
adopt a respectful attitude and be directed by the unique values, beliefs and experiences ofIndigenous Australian residents, their family members and community[348,349] (Level EO;
Level EO). For example, a recent study on terminal illness in rural Indigenous Australiancommunities found that participants were aware of the availability of health services[350] (Level
QE) but preferred care to be provided by the family for as long as possible, and for some people
dying on their home country had considerable spiritual significance. Willis (1999)[349] (Level
EO) discusses Indigenous Australians’ strong preference for care to be provided by particular
relatives and the importance of traditional healers. Complex family relations may mean that theappropriate decision-makers are not the immediate caregivers.
From the perspective of a member of the aged care team adopting a palliative approach, thedecisions of Indigenous Australian residents and their family and significant community
members may not be consistent with the views of some team members. However, consistent
with a palliative approach, the role of the aged care team is to work with the resident, family,community members and relevant services to find ways to enable the resident’s goals tobe achieved. A recent assessment of Indigenous Australians requiring a palliative approach
identified a number of examples of services being able to improve the quality of palliative
services while respecting residents’ wishes to die in a particular community[133] (Level QE).

10.1 BACKGROUND
In addition to their distinct culture, other aspects of Indigenous Australians’ experience have led toa large burden of unresolved grief and loss that is inherent in Indigenous Australian communities
as a result of premature death, family separation and community breakdown. This can have farreaching effects and impact significantly on the dying and bereavement experience of Indigenous
Australians and their family members. It also affects the ability of Indigenous Australian healthworkers to provide ongoing care. With a life expectancy of 20 years less than non-Indigenous
Australians, and a high burden of chronic illness, health problems usually associated with people
in their seventies or eighties are more prevalent among much younger Indigenous Australians.[133]A consequence is that Indigenous Australian residents requiring a palliative approach are likely tobe relatively young compared with non-Indigenous Australian residents.
The delivery of a palliative approach among Indigenous Australians is a largely underdevelopedarea of health care. Indigenous Australians tend to access both mainstream palliative services
and RACFs infrequently. Factors associated with this infrequent use of palliative services

Guidelines for a Palliative Approach in Residential Aged Care143

include lack of information about these services, culturally inappropriate care provided, and thelack of availability of the services in rural and remote areas where Indigenous Australians are
more likely to live than non-Indigenous Australians.
Indigenous Australians’ access to primary health care has gradually improved through theestablishment of Indigenous Australian community-controlled health organisations that areable to offer culturally appropriate and accessible care. However, across Australia few services
are funded specifically to provide a palliative approach to Aboriginal or Torres Strait Islander
peoples[133] (Level QE). Nevertheless, there are Indigenous Australian residents and staff inmany RACFs.

10.2 PROVIDING APPROPRIATE SUPPORTMembers of the aged care team need to be proactive in their efforts to provide appropriate
support for Indigenous Australian residents and family members.
First, this requires being aware of the resident’s cultural identity, that is, whether the
resident and the resident’s family identify themselves as Aboriginal or Torres Strait Islanders.
Importantly, Indigenous Australian residents may have non-Indigenous Australian family
members. Additionally, family members of non-Indigenous Australian residents may be
Indigenous Australians.
Second, the use of Indigenous Australian aged care team members, Indigenous Australian
health workers and liaison officers are an important though often under-used resource
for consulting with the individual resident, their family and other significant cultural orcommunity members[133] (Level QE). Sullivan recommends initiating protocols to involve anappropriate cultural broker (such as an Indigenous Australian health worker) in the care team,with the resident’s and family members’ consent[133] (Level QE).
Third, RACFs will be better placed to meet the needs of Indigenous Australian residents andfamily members if they establish dialogue and relationships with the local Indigenous Australiancommunity and particularly the relevant Aboriginal Community Controlled Health Organisation.
These groups can provide valuable referral services and advice about local cultural issues regarding
dying to ensure that Indigenous Australian residents’ and families’ total needs are met.
Finally, Eckerman and colleagues (1992)[351](Level EO) warn about transporting simplistic
views of traditional values into rural and urban settings. Traditional Indigenous Australianculture is far from simple. Adopting a standard view of Indigenous Australian culture andexpecting it to ‘fit’ every Indigenous Australian does not do justice to a complex culture.
Indigenous Australian populations are not, of course, homogenous. Indigenous Australians
live in a wide spectrum of ecological zones, speak several hundred languages and have varying
religious and healing practices, diets, family traditions, political structures and economic
strategies. Eckerman and colleagues take this even further with an exhortation “to be aware…
of differences within cultural groups [and] see Aboriginal people as individuals”.[351, p. 9] Allmembers of the aged care team should receive locally delivered cultural awareness training.

144 		 Guidelines for a Palliative Approach in Residential Aged Care

In March 2002, the Australian Government Department of Health and Ageing commissioned
a study, led by Dr Kate Sullivan, into the palliative care needs of Indigenous Australians acrossAustralia. This study identified significant issues in the delivery of a palliative approach to
Aboriginal and Torres Strait Islander people and made recommendations about how these gaps
in service might be addressed[133] (Level QE). The following guidelines have been extrapolated
from this study’s findings.
Guideline:

Aboriginal and Torres Strait Islander Issues
Ref No.

Evidence level

63.

Respectful attention to the individual needs of Indigenous Australianresidents, taking into account their beliefs regarding illness, healing,
comfort, care practices, location of care, and death and dying is required
to provide Aboriginal and Torres Strait Islander residents with culturally
appropriate and satisfactory care.

133

QE

64.

Aboriginal health workers, liaison officers, other Indigenous Australian
health care practitioners and community organisations have important
knowledge about local cultural values and individual situations andshould be involved when developing protocols and when working with
Indigenous Australian residents to deliver the best possible care.

133

QE

65.

Regular review of Indigenous Australian residents’ needs is required
because their needs may change over time. Communication in theresident’s own language will enhance understanding and attention to
his / her needs.

133

QE

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CHAPTER 11

CULTURAL ISSUES

Australia has a rich multicultural population. According to the 2001 census, 22% of Australia’s
population was born overseas representing over 200 different ancestries.[352] Recent statistics
indicate that 25% of permanent residents in RACFs were born overseas and 13.6% were fromcountries or regions other than Oceania, the UK, Ireland and North America. Almost 60% of
these residents live in either New South Wales or Victoria.[353] As migration to Australia is as
old as European settlement itself, many other residents would have had parents or grandparents
born in these other regions, although a statistical enumeration is not available. Residents andfamily members from culturally and linguistically diverse populations may have particular needs
that members of the aged care team should address in order to provide compassionate andeffective palliative approach to care.
Definitions of culture refer to a set of beliefs, values, norms and practices that are learned,
shared, and dynamic and which influence individuals’ thoughts, expressions and actions in apatterned way. Culture is not static; it changes over time and place and between and within
persons. No individual can be reduced either to a simplistic set of cultural norms or to a set of
exotic or quaint rules.
Multiculturalism is now a defining characteristic of contemporary Australian life. Not only
are there many cultural groups but, importantly, many relationships exist between groups.
Within nations, societies and communities there are dominant and marginalised cultures. The
dominant culture of an RACF may favour certain styles of behaviour and ways of talking andinteracting, and privilege certain residents over others.
Conflicting points of view often centre on what the notions of equality and equity involve. Someargue that it means treating everyone in the same way. Others argue that it means acknowledging
difference, especially when that difference is associated with disadvantage. However, one of theissues that is clear in Australia is that power is not distributed evenly within or between cultures.
The dynamics of power relationships and the way they affect individuals and groups must be an
integral part of our understanding of cultures. Such an understanding is essential for the creationof RACF environments and guidelines that will value diversity, and thus promote the emotional
and physical health of all members of that community.
All residents require careful assessment to ensure that assumptions are not made for culturalneeds based on a resident’s language abilities alone. The need for the aged care team tounderstand the health and caring perspectives of different cultural groups is especially
important in the context of a palliative approach. It is often at this stage that residents andfamilies turn to more culturally familiar and comforting beliefs and practices. It is consideredthat the aged care team cannot provide a sensitive palliative approach to minority ethnic groups
unless there is a greater understanding about the meaning of death and dying from the cultural

Guidelines for a Palliative Approach in Residential Aged Care147

perspective of these communities[354] (Level EO). When the aged care team responds sensitively
to the cultural beliefs and practices of residents and families, their satisfaction with care isincreased[355] (Level EO).
Unfortunately, evidence suggests that members of the aged care team frequently experience
communication difficulties with those they care for if they are from different cultural andlinguistic backgrounds. These team members can experience stress and frustration caring
for ethnic minority patients[356] (Level QE). Communication difficulties are reported tocompromise the provision of holistic care, including psychosocial support. Furthermore,
physical care may be sub-optimal as well[357] (Level QE). Nurses have been shown toconsistently rate the level of pain experienced by individuals differently if they do not share acommon language or if the person being cared for is from another culture[348] (Level EO).

Vignette 12: Cultural understandings
An older woman from Pakistan was admitted to a hospital with malignant bowel
obstruction. The family, who had limited English, had indicated they did not want more
cancer treatment and surgery was not an option. While her symptoms were well controlled
she was deteriorating and it was likely that she was going to die in a few days; this was
explained to the family. Some members of the aged care team became upset when they
saw a family member trying to force-feed a mixture of rice and broth to their mother. An
explanation of why their mother could not be given food was given and the family was
shown how to give good mouth care. The family yet again was seen force-feeding theirunresponsive mother. This time when staff talked to the family they asked them why they
were continuing to feed their mother. They explained that they were disturbed by the cold
water and ice chips being given and were afraid that they were weakening her further. To
counteract the cold fluids they wanted to give her something warm. Together, staff andfamily agreed that the mother would be given warm water for mouth care, supplemented
by occasional use of the clear broth. All parties were satisfied and there were no more
conflicts between the family and aged care team.

Hall and colleagues (1998)[358]11.1 TRANSCULTURAL COMMUNICATION
Whenever possible, information about a palliative approach should be provided to culturally
and linguistically diverse residents and their families in their own language[359] (Level II).
To adequately respond to the needs and concerns of residents and families of other cultural
backgrounds, explicit efforts must be made to identify a shared understanding and negotiate asolution. Sensitive communication of this kind can diffuse conflict about care by pointing toalternative strategies that are culturally acceptable to the resident, their family and the aged careteam[358] (Level EO).
It is important to recognise that consent to medical treatment cannot be given unless theresident (or their proxy) demonstrates that they have a clear understanding of what thetreatment involves. One-way conversations consisting of ‘explaining’ procedures are notevidence that communication or understanding has taken place. Within this context, theimportance of using interpreter services cannot be over-emphasised.

148 		 Guidelines for a Palliative Approach in Residential Aged Care

11.2 Assessment
The best approach to identifying the residents’ cultural needs is to assess their individual
practices and beliefs. This could be done at the same time as the spiritual assessment,
depending on the resident’s ability to do so, because cultural and spiritual beliefs can overlap.
Whenever possible, involvement of the resident’s family should be sought, to assist the team’s
understanding of the resident’s cultural beliefs. For some cultures it is the family, rather than
the resident, who make decisions and this needs to be clearly determined[360] (Level EO). Any
assessment needs to be mindful of the comfort level for the resident regarding their ability totalk about death or dying[360] (Level EO).

11.3 Management
Cultural sensitivity requires that the aged care team be aware of how culture forms residents’values, beliefs and basic assumptions; the team must also acknowledge that difference exists
and have respect for these differences[361] (Level QE). ‘Cultural competence’ refers to the agedcare team’s knowledge and skills rather than their attitudes[361] (Level QE). To be culturallycompetent, an aged care team needs to have cultural sensitivity, skills in communication, use ofinterpreters, and an awareness of non-verbal communication[361] (Level QE).
An alternative term to cultural sensitivity and competence is ‘cultural brokerage’[358] (Level EO).
The principles are the same as for cultural competence, but some steps have been articulated
that may be beneficial for RACFs to consider when developing appropriate cultural support.
These steps are:• having an awareness of one’s own framework of attitudes, values and beliefs, and of its
potential impact on the care provided to residents receiving a palliative approach;• establishing open, non-threatening relationships;• using effective communication skills to elicit important aspects of other people’s frameworkof attitudes, values and beliefs;• using effective communication skills to share important aspects of one’s own framework; and• negotiating common ground.
(Adapted from Hall et al., 1998)[358] (Level EO)
To help the aged care team in becoming cultural brokers, education on cultural diversity is
recommended[356,361] (Level QE; Level QE).
Privacy issues are also relevant and have different levels of importance for varying cultural groups.
For example, some Chinese residents receiving a palliative approach may experience a cultural
conflict with the aged care team[362] (Level EO). ‘Face’ is a term commonly used within Chinese
cultures and refers to respect not just from family and friends but also respect from others, inthis case the aged care team[363] (Level IV). To ‘save face’ (maintain respect), any attempt at
open discussions between family members and the aged care team will involve very little input
or discussion from family members[363] (Level IV). This behaviour is sometimes referred to as ‘aconspiracy of silence’ and may lead to frustration for the aged care team and family members[362]

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(Level EO). This silence is based on a belief that to discuss dying is the same as wishing that
person dead, and such discussion may even lead to their death[362] (Level EO). Other cultures may
also have beliefs and practices that will direct how privacy is to be handled. Most importantly,
individuals within a cultural group may not share these beliefs, highlighting the importance of anindividualised assessment of the resident’s and their family’s culture.

11.4 INTERPRETER SERVICES
When involving an independent interpreter, the aged care team should explain the interpreter’srole and the issues of confidentiality to the resident and/or their family. The resident’s consent
for the interpreter to be involved during decision-making processes must be obtained before
commencing. In rural and remote areas, using telephone interpreter services is recommended.
The National Accreditation Authority for Translators and Interpreters (NAATI) is also
recommended, depending on availability, particularly for rural and remote areas.
Generally, the involvement of family members, friends or other unqualified people to assist
with interpreting is not considered prudent practice because family members and/or friends
may inadvertently or deliberately censor or alter information. Additionally, as with unqualified
people, their language skills may be inappropriate to enable them to work effectively under suchcircumstances. The issue of the interpreter’s gender also needs to be considered, because formany cultures it is inappropriate to speak with the opposite gender about health care issues.
Guideline:

Cultural Issues
Ref No.

Evidence level66.

Education about cultural diversity is recommended for aged careteams to enhance understanding of care preferences of residents
from varying cultural groups. Efforts to accommodate these
preferences promote individualised care that benefits the residents’and their families’ well-being.

356, 361

QE

67.

Where possible, provide information about a palliative approachto residents from culturally and linguistically diverse backgrounds
in their own language because this enhances cultural sensitivity
for residents and their families and ensures adequate andappropriate care.

359 356

II150 		 Guidelines for a Palliative Approach in Residential Aged Care

QECHAPTER 12SPIRITUAL SUPPORT

Dein and Stygall (1997)[364] (Level EO) explored whether being religious helped or hindered
in coping with a chronic illness, and distinguished between religion and spirituality. Theirreview showed that religion is a common coping mechanism that may have a positive effect.
The importance of an effective coping mechanism is that it could reduce the psychologicalmorbidity associated with chronic and terminal illness, and therefore, to overlook the spiritualcomponent of a palliative approach by ignoring spiritual matters would be an omission ofcare[365] (Level EO).
Spirituality’s role as a coping mechanism was supported by a review of studies dealing withreligion and spirituality[366] (Level EO). The reviewers found that most studies have shownthat religious involvement and spirituality seem to be associated with positive health outcomes.
Six themes associated with spirituality have been identified: needs for religion, need forcompanionship, need for involvement and control, need to finish business, need to experiencenature and need for a positive outlook[367,368] (Level QE; Level EO).
Spirituality was found to be an important predictor of the quality of life of individuals receiving
a palliative approach[367,369,370] (Level QE; Level QE; Level QE). Indeed, impending death isconsidered a powerful stimulus for reflection on the significance of life and destiny for residents
in RACFs[371] (Level IV). Providing spiritual support is a responsibility of the aged care teamthat must be fulfilled to enhance a resident’s quality of life[367] (Level QE).
Research indicates that people are receptive to carefully worded inquiries about their spiritualand religious beliefs[372] (Level QE) and that providing spiritual support was an area identified
as important by families[373] (Level QE). Aspects of spiritual support included staff talking
about religion and spiritual matters, visits from clergy, and prayers.[373] Additionally, early
assessment of the spiritual needs of residents is important and should not be relegated to a laterstage of the illness.

12.1 ASSESSMENT
Spiritual assessment is an ongoing process. Understanding the resident’s current or desired
practices, attitudes, experiences and beliefs assists in meeting their spiritual needs[367] (Level
QE). Unfortunately few spiritual assessment tools have been validated; however, one tool thathas been validated is the System of Belief Inventory (SBI).[374] The SBI is a self-report inventory
that measures two domains: 1) Presence and importance of religious and spiritual beliefs andpractices, and 2) the value of support from a religious / spiritual community.[374]
The SBI originally contained 54 questions and was developed for use with cancer patients;
however, the tool was revised to broaden the applicability to people with non-cancer diagnoses
and to shorten the number of questions to 15 (SBI-15R) to reduce participant burden[375]

Guidelines for a Palliative Approach in Residential Aged Care151

(Level IV). Subsequent studies using the SBI-15R found it was a valid and highly reliable
assessment tool that was appropriate for use with people who had non-cancer diagnoses, wereolder, and from other cultures, such as Australian, German and Israeli [375–378] (Level IV; Level
IV; Level IV; Level IV).
Irrespective of whether a validated spiritual assessment tool is used or not, the aged care teamneeds to determine whether a resident embraces some form of spirituality and the ways inwhich they practise this belief. Simply asking a resident which religion they belong to is not anadequate means of determining spiritual needs. Some suggestions about how the aged care teammight begin discussions of spiritual needs are given in the following table.
Table 19: How to assess spiritual needs

Possible questions:
How are you in yourself?
What is your source of hope and strength?
What are your spiritual needs?
Are there ways we might help with your spiritual needs or concerns?
Things to look for:Social Isolation;
Depression;
Resident questioning meaning of their existence;
Resident seeking spiritual assistance;
Resident attendance at spiritual services; andReligious items.

Reprinted from GERIATRIC NURSING, 20(3), Hicks, T.J.J., Spirituality and the elderly: nursing
implications with nursing home residents, 144–146, [379], © 1999, with permission from Elsevier.
Similarly, obtaining a comprehensive social/family history that includes these issues from theresident or family at time of admission may help identify the resident’s own past and present
resources for their spiritual care[367] (Level QE). Spiritual assessment is best conducted ina trusting environment by a person with adequate interpersonal skills who can engage theviews of the resident and the family through a conversational style rather than a fact-finding
interrogation[367] (Level QE).
Whether a resident’s spiritual care involves public or private practices, their privacy needs to berespected and an opportunity given to carry out their practices[367,373] (Level QE; Level QE).
Spiritual counselling and support are essential to a palliative approach and may help give accessto rites and rituals that offer symbolic meaning to residents[380] (Level QE). Social isolation,questions on the meaning of life, depression or a search for spiritual assistance may indicate thata resident requires spiritual attention.
A regular review of spiritual needs will guide practice, ensuring that spiritual care is flexible
and adaptable[367,373] (Level QE; Level QE), meeting the needs of the resident and family,
particularly when needs change (e.g. when death is imminent)[371] (Level IV). Also evidence
indicates that people who profess stronger spiritual beliefs are able to resolve their grief more
quickly after a death of a close friend or relative[381] (Level QE). The following story illustrates
the importance of a regular review.

152 		 Guidelines for a Palliative Approach in Residential Aged Care

Vignette 13: Jack’s story
Jack was quick to respond to the question on admission regarding religion. “Just put downnil”, he said. “I’ve never been interested and it’s too late now.” Over the next few months,
Jack became more and more acquainted with the new chaplain, who would always
acknowledge him on her visits to his roommate. When his roommate died, Jack went to thefuneral in the chapel and was very comforted by the way the chaplain acknowledged his
roommate’s life and his place in the facility. She acknowledged the grief of other residents,
stopping to speak to each one present at the funeral. A few days later Jack asked thenurse, “Do you think I could have that chaplain visit me when my time comes? She does agood funeral and I’d like her to do mine!” And so, a relationship of trust was establishedbetween Jack and the chaplain. She listened to Jack and took careful note of his requests,
so that when the time came for Jack’s funeral there was a distinctively personal element.

12.2 MANAGEMENT
Spiritual care involves assisting residents to articulate those things that are important to them
personally. Spiritual care involves sensitive listening, rather than providing answers. It is notnecessary for the aged care team to share the same spiritual beliefs as the resident in order tounderstand the resident’s spiritual needs, nor is the aim of spiritual care for members of theaged care team to impose their own views[382] (Level QE). This care includes an awareness ofthe feelings of isolation the resident may experience at the end-of-life[39] (Level QE). Table 20
provides an overview of spiritual interventions for the aged care team.
Table 20: Spiritual interventions to support residents

1.

Allow the resident to guide all interventions.

2.

Silent support:
Be with the resident;
Provide a supportive presence;
Avoid judgment.

3. Liaison:
Coordinate services and people (e.g. chaplains/pastoral care workers, family, friends) as requested by theresident;
Ensure access to spiritual activities (e.g. Bible study, worship ceremonies);
Obtain requested spiritually related items (e.g. books, rosaries, statues, videos, music);
Avoid interrupting the resident during spiritual activities.
4. Active listening:
Engage in conversation with the resident;
Be alert to the resident’s comfort level — watch for eye contact, bodily movement (turning away,
restlessness) and disengagement from conversation;
Repeat themes of the conversation to ensure accurate interpretation.

Reprinted from GERIATRIC NURSING, 20(3), Hicks, T.J.J., Spirituality and the elderly: nursing
implications with nursing home residents, 144–146, [379], © 1999, with permission from Elsevier

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12.3 CHAPLAINS AND PASTORAL CARE WORKERS
Chaplains and pastoral care workers can provide spiritual care to people in a variety of settings.
Chaplains usually have been ordained into their religion, though this may not always be thecase. The inclusion of either a chaplain or pastoral care worker in an aged care team creates apalliative approach that considers each resident’s spiritual care needs.
In a recent UK study, 73% of residential facilities surveyed (N = 1,500) had requested theassistance of someone from the Christian faith to help care for a dying resident[380] (Level
QE). Fourteen percent had asked for support from other faiths, such as Judaism, Baha’ism andHumanism. External help was sought because 67% of the RACF managers felt that it would
benefit the resident. This suggests that the aged care team may perceive increased spiritualneeds at the time of death and readily seek assistance from people who are well trained in thearea of spirituality.[380] These findings point to the relevance of access to chaplains and pastoralcare workers for residents requiring a palliative approach. However, unless the resident wants
such spiritual support, a visit from a chaplain or pastoral care worker can be considered as an
intrusion, as is illustrated in the following story.

Vignette 14: Alison’s story
Alison had never learned to read or write, having been considered too ‘slow’ for normal
schooling. After entering the RACF aged 89, her life flourished. She made friends withanother resident, entered into all the social events and attended the weekly chapel service.
The pastor would visit twice a week and read Bible stories to Alison. Although she would
remain politely attentive, the aged care team who knew her well perceived that she was
not interested despite the pastor’s best efforts to engage her. The aged care team wasunsure whether to act on Alison’s behalf, as they were reluctant to intrude into ‘religious’
territory. However, one time Alison was also able to speak on her own behalf when the
pastor asked if she would like to have further visits from him. “No thank you” was her
response to the query and the pastor respected her preference.

To be effective in providing spiritual support, the chaplain or pastoral care worker shouldhave experience and knowledge about spiritual issues and should be an integral part of amultidisciplinary team[367] (Level QE). However, other members of the aged care team are often
asked questions relating to spiritual matters by residents and these are best addressed at the timeby the aged care team in an open, non-judgemental manner[367] (Level QE).

154 		 Guidelines for a Palliative Approach in Residential Aged Care

Guideline:

Spiritual Support

68. A multidisciplinary aged care team that responds in an open, nonjudgmental manner to residents’ questions regarding spiritual needs,
and that involves a chaplain / pastoral care worker with experience andknowledge of spiritual issues, is likely to provide appropriate spiritualsupport to residents, which will enhance their quality of life.
69. A palliative approach supports residents and families to express theirunique spirituality. Respecting their privacy and providing an opportunity
for them to continue their spiritual practices enhances a resident’s
spiritual care and their quality of life, as does spiritual counselling.
70. Understanding the resident’s current or desired practices, attitudes,
experiences and beliefs by obtaining a comprehensive history, assists inmeeting the spiritual needs of a resident, as does a regular review.

Ref No.

Evidence level

371

IV

367, 380

QE

371

IV

367, 369

QE

371

IV

367, 373

QE

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CHAPTER 13

VOLUNTEER SUPPORTPalliative care services have historically relied on the involvement and contribution ofvolunteers, contributions that are considered valuable to the success of these services[383,384](Level QE: Level IV). Volunteers have been found to be helpful in providing personal support,
and to possess adequate interpersonal skills,[383,385] as is illustrated in the following story.

Vignette 15: Joyce and Miss Walker“She just crept into my heart.” This comment was made by Joyce, a volunteer, whospontaneously offered to give a eulogy at Miss Walker’s funeral. Joyce had been assigned
to assist Miss Walker with her meals whenever she could spare the time. Now bed-boundwith little independent movement, experiencing the inexorable decline of Alzheimer’s
disease, Miss Walker seemed to recognise Joyce at each visit. “I think it’s the perfume. I
always wear the same perfume and talk to Miss Walker about it. I just chatter on when
I’m feeding her. She probably doesn’t understand a word I say, but I carry on anyway.
I also think she likes my singing! Although she never says a word I’m sure she knowsme.” At the funeral, the priest referred to Miss Walker as “a person we know little about”.
Joyce, one of the four people present, disagreed: “I know a lot about her. May I say a
few words please?” Unknown to the aged care team, Joyce had pieced together someof Miss Walker’s past, so that she could talk to her about her early life as a dancer and adressmaker. Joyce’s contribution transformed an impersonal, perfunctory funeral into alively celebration of Miss Walker’s life.

RACFs’ access to volunteers varies widely, as does the role volunteers play within a facility.
However, as volunteers are an integral part of palliative teams providing support and assistanceto clients[384] (Level IV), it is suggested that residents in RACFs would similarly benefit[386](Level EO).

Coordination of volunteers
Effective inclusion of volunteers requires appropriate support and supervision. To facilitate
the inclusion of volunteers into the facility, the aged care team may require education in
managing volunteers in an RACF setting, or preferably, a coordinator of volunteers’ position
could be introduced.
A coordinator who has the requisite experience and/or training in volunteer support[385] (Level
EO) can provide ongoing supervision and support. A coordinator of volunteers is a person
responsible for the recruitment, training, placement and ongoing support of volunteers and for
liaising with members of the aged care team to ensure volunteer roles are clearly defined andmeeting the needs of residents[384] (Level IV). The criteria considered important for selecting asuitable candidate for the role of coordinator of volunteers are maturity and highly developed

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interpersonal and leadership skills[385] (Level EO). For success in this role, it is important for thecoordinator to have autonomy and authority, and for the position to be salaried[385] (Level EO).
Coordinators of volunteer services have reported that a wider range of volunteers is entering
the unpaid palliative workforce[385] (Level EO). The potential contributions of this varied groupof volunteers are valued. However, there is a notable gap in the literature related to how toscreen, train, monitor and evaluate volunteer services. Given the magnitude of the volunteer
work performed, the vulnerability of residents receiving volunteer services, and the relatively
unsupervised support provided by volunteers, greater attention to personal issues, standards ofvolunteer care, and related management issues for this unpaid workforce is needed. Policies andprocedures relating to volunteer recruitment, selection, orientation and training can informvolunteer involvement and ensure that volunteer roles are clearly defined. It is suggested that
RACFs contact organisations such as Volunteering Australia to review their standards on thesematters (see Appendix I ‘Resource List’).
The education and ongoing supervision of volunteers who may provide support to residents andtheir families can help provide a service that is valued by residents and carers[384,387] (Level IV;
Level QE). Following a suitable recruitment, orientation and matching process, volunteers may
act as a companion and confidant to the resident and their family[382,384] (Level QE; Level IV).
Volunteers may also provide bereavement care if they have been trained in this area, and receive
ongoing support and supervision[388] (Level QE).
Two issues raised in the literature that need to be addressed via the orientation and ongoingsupervision of volunteers is the lack of commitment by some volunteers and volunteers
not knowing the appropriate boundary between themselves and family members after the
bereavement period[388,389] (Level QE; Level EO). These issues are paramount, particularly ifvolunteers are to be involved in providing bereavement support.
Another factor that needs to be considered by the coordinator of volunteers is that a wider
range of volunteers is entering the unpaid palliative workforce; significantly, those who havebeen actively serving as a volunteer for 4 years or less are more likely to be working full-time orpart-time[390,391] (Level QE; Level EO).
The following vignette illustrates the appropriate involvement of a volunteer with a resident
who was dying.

Vignette 16: Frank and Andrew
Frank had been admitted to an RACF on discharge from hospital. His condition
deteriorated rapidly and the staff contacted the local palliative service for support. As
Frank had limited family support, Frank agreed that he would like Andrew, a volunteer fromthe palliative service, to sit with him. On his last visit, Andrew found that Frank was nolonger responsive, but appeared agitated and restless. Andrew sat with Frank for several
hours, playing his guitar. “I don’t know if it was any help but he seemed calmer while I was
there,” said Andrew. The staff reported that Frank did in fact settle while Andrew was withhim. Frank died peacefully several hours later.

158 		 Guidelines for a Palliative Approach in Residential Aged Care

Guideline:

Volunteer Support
Ref No.

Evidencelevel

71. The integration of trained volunteers into multidisciplinary teams canenhance the provision of a palliative approach to residents.

384
383

IV
QE

72. Ongoing support and education from a trained coordinator ofvolunteers will increase the effectiveness of volunteers as members of amultidisciplinary team providing a palliative approach.

384
383

IV
QE

384
383, 388

IV
QE

73. Suitably screened and matched volunteers may act as companions andconfidantes, which can help residents and their families to feel more supported.

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CHAPTER 14

END-OF-LIFE (TERMINAL) CARE

How people die remains in the memories of
those who live on.[392]This chapter focuses on care of the residents and their families when death appears imminent.
The key points are discussed, but other publications — such as the Oxford Textbook of Palliative
Medicine,[56] Therapeutic Guidelines: Palliative Care[109] and Care of the Dying Patient: A Pathway
to Excellence[393] — should also be consulted to complement the information given here. Manyof the symptoms discussed should also be considered alongside other references to symptom
management in this document.

14.1 WHAT IS OPTIMAL END-OF-LIFE CARE?
The quality of end-of-life care can vary from person to person, due to differing beliefs, values,
culture, spirituality and basic assumptions. This makes the term ‘optimal end-of-life care’ difficult
to define, and even more difficult to accurately measure. Despite these obstacles, various theories
abound as to what are the common factors that exist when optimal end-of-life care is achieved.
The following list should help aged care team members raise their awareness about some of thesecommon factors for optimal end-of-life care. Residents who are dying may need to:• know when death is coming, and to understand what can be expected;• be able to maintain a sense of control and have their wishes given preference;• be afforded dignity and privacy;• have control over pain relief and other symptom control;• have choice over where their death occurs (RACF, home or elsewhere);• have access to information and excellent care;• have access to spiritual and emotional support as required;• have access to a palliative approach;• have control over who is present and who shares the final moments;• be able to issue advance care plans, which ensures that their wishes are respected;• have time to say goodbye; and• not have life inappropriately prolonged.
(Adapted from the Centre for Policy on Ageing, 1999)[394]

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This list may serve as a reminder for the aged care team to assess these issues each time they areaware of a resident’s imminent death, so they can take comprehensive steps towards optimal
end-of-life care. The list may also act as an agenda for a family conference, prompting theresident and their family to express their ideas of what optimal end-of-life care means to them.
It is also important at this time to determine the appropriateness of unwanted or unhelpfulinterventions (also known as ‘clinical futility’) for residents who are dying. Determining clinicalfutility is a step towards providing a successful palliative and end-of-life approach[24] (Level
QE). For residents without an established advance care plan (see Chapter 4, ‘Advance careplanning’), particularly when discussions regarding end-of-life wishes have been unfruitful or
have not occurred, clinical futility can be an issue for the resident, their family and carers, andthe aged care team[23] (Level QE).

14.2 RECOGNISING WHEN A RESIDENT IS DYING
Yedidia and MacGregor (2001)[395] (Level QE) have identified seven themes that characterise
the attitudes and perspectives that people may confront when dying. These themes are; struggle(living and dying are difficult), dissonance (dying is not living), endurance (triumph of innerstrength), coping (finding a new balance), incorporation (belief system accommodates death),quest (seeking meaning in death), and volatile (unresolved and unresigned). Aged care teammembers familiarity with such life and dying themes may facilitate their provision of more
appropriate care and support for residents.
The capacity of individual’s who are dying to accept their impending death seems to bepositively affected when their primary caregiver accepts death and the terminal prognosis isappropriately communicated[396] (Level QE).
End-of-life care refers to the phase where death may be expected within a period of hours toseveral days. Determining when the terminal phase has commenced may be difficult. Most
residents have multiple clinical diagnoses involving multi-system pathology, and the diagnosisof dying is often made only by exclusion.[397] There are different illness trajectories for people
with cancer, organ system failure and dementia (as shown in Figure 4):• Cancer. Residents diagnosed with cancer have a more predictable course and can usually
perform activities of daily living until quite late in their disease process (see Section 2.2.1,‘Prognostication’, for further details).
• Organ system failure. Residents dying of chronic organ system failure tend to follow a second
trajectory. With conditions such as heart failure, obstructive lung disease and cirrhosis, thoseaffected may be ill for many months or even years, with occasional exacerbations. Eachexacerbation may trigger fears of death, with uncertainty regarding the resident’s ability torecover from the most recent episodes.
• Dementia/frailty. A large and increasing number of people with progressive disabilities such as
strokes, dementia and frailty due to old age may experience a third trajectory and need longterm help with activities of daily living; they will generally experience a more gradual decline
in health[13] (Level QE). The most common symptoms during the last year of a person’s life
with dementia are mental confusion (83%), urinary incontinence (72%), pain (64%), low162 		 Guidelines for a Palliative Approach in Residential Aged Caremood (61%), constipation (59%) and loss of appetite (57%)[77] (Level QE). Symptoms
commonly experienced during the last 48 hours of a resident’s life include pain, dyspnoea,
respiratory congestion, delirium, dysphagia, fever and muscle twitching (myoclonus)[398](Level IV).
Figure 4: General trajectories of function and wellbeing over time in eventually fatal
chronic illnesses

A CancerC Dementia/Frailty

B Organ System Failure

Function

High

Low
Time

Death

Time

Death

Time

Death

Permission to reproduce this figure received from the Author[13, p. 930]
Recognising when the death of a resident without cancer is imminent is more difficult todetermine due to co-morbidities[38] (Level IV). The aged care team and families need to bemade aware that for some residents death may occur more quickly than expected, while forothers the dying process may be longer than expected. However, immediately before death(within hours to days) several of the following symptoms and signs may be present:• peripheral shutdown and cyanosis;• changes in respiratory patterns (e.g. ‘Cheyne Stokes’ breathing);• drowsiness or reduced cognition (e.g. not responding to verbal and/or physical stimuli);• uncharacteristic or recent restlessness and agitation;• retained upper airway secretions; and• cardiac — hypotension, tachycardia.
If a resident’s death appears to be imminent, the resident’s doctor should be informed
immediately and an assessment conducted to determine if there are any reversible causes. Whena decline is unexpected, assessment should be aimed at identifying causal factors, which could
include assessment of temperature, heart rate, bowels, urination, respirations, blood pressure,urinalysis, hydration status and level of response.
Where death is imminent and reversible causes have been excluded, all interventions should
be reconsidered in terms of benefit versus harm, and the resident’s comfort should remain theultimate goal. Consideration should be given to ceasing interventions such as oxygen, parenteral

Guidelines for a Palliative Approach in Residential Aged Care163

therapy, blood glucose monitoring, PEG/nasogastric feeding, and unnecessary medications.
There is no single description of an individual’s last hours of life, and the aged care team needs
to be alert to individual differences and the resident’s reactions to their impending death. The
family may also require more support at this time and the aged care team needs to be able toprovide this. The aged care team is in a unique position to assist families in coping with the lossof a relative during the dying process and after death has occurred[373] (Level QE). This support
may need to be practical as well as emotional[399] (Level QE). (See Chapters 8 ‘Family support’,and 15, ‘Bereavement support’, for further information).
The following story highlights some of the responses residents and their families may have whenfacing imminent death.

Vignette 17: Ann and Mr Wells’ family
Ann, the nurse in charge, was aware that Mr Well’s death was imminent and she phoned
the family accordingly. Knowing the family, through her many discussions with themover the previous year, she was aware of the difference of opinion between some family
members regarding the palliative approach to care and she knew that one daughter wasconcerned about the recent introduction of opioids. Ann’s colleague thought it was “toolate” to call a family meeting: “Anyway, it’s not our business to get involved in their family
dispute!” Ann knew otherwise and gave the family this option: “You realise your father’s
condition is deteriorating, and as I’ve explained before, we can never predict precisely
when death will occur. I’m aware some of you are uncomfortable with the morphine
infusion, so I wonder if you’d like to meet with the doctor and myself about 2.30p.m. It’s
important that the whole team, which includes the family, agrees with the plan of care. It’s
also important, particularly at this stage, to ask ourselves again, what is in your father’s
best interests? This meeting will give you the opportunity to openly discuss any questions
and concerns.”

14.3 MEDICATION ISSUES
Practical comfort measures are very important in managing end-of-life symptoms, and areoften more effective than other interventions. Medical intervention is, however, frequently
required for specific symptoms. Several medications are recommended in the next section, but
for specific information such as dose levels relevant resources such as the Therapeutic Guidelines:
Palliative Care[109] or the Australian Medicine Handbook Drug Companion Aged Care[147] should
be consulted.
RACFs, in consultation with GPs and local pharmacies, should develop strategies to ensure that
residents who are approaching death have ready access to common terminal phase medications.
It is best to have the relevant medication orders and prescriptions ready for possible symptoms
in the end-of-life phase.[109] For example, restlessness, delirium and excessive respiratory
secretions are common symptoms that can develop quickly, so relevant medications should bereadily available, with sufficient ranges of dose to deal with a worsening of symptoms; theseshould be ordered by the GP.
When the resident is approaching death, the use of oral medications should be reviewed. Some
medications, such as hypoglycaemics, anticoagulants and antihypertensives, may no longer

164 		 Guidelines for a Palliative Approach in Residential Aged Carebe relevant, and may even worsen symptoms if continued[146] (Level EO). However, suchdecisions should be made through negotiations between the resident and/or the family andthe doctor. The Guidelines for Medication Management in Residential Aged Care Facilities[400]should be consulted when making any decisions about medication management; althoughthese guidelines are neither evidence-based nor specific to palliative care they provide sufficientguidance regarding medication management in general in RACFs.
Oral administration of medications is not feasible if there are swallowing difficulties, nausea,
intestinal obstruction and decreased level of consciousness. Some medications are amenable
to being crushed for ease of swallowing; however, many result in adverse effects. Therefore,
it is recommended that the Guidelines for Medication Management in Residential Aged Care
Facilities[400] is first referred to because it contains a list of medications and their effects
when crushed altered. For example, when Oxycodone (Oxycontin) is crushed its absorption
characteristics become altered.[400, p. 51]
Alternatively, some medications may be administered in transdermal, sublingual or rectal routes;
however, in most circumstances subcutaneous administration will be required for effective symptom
management. The subcu taneous route is preferred to other parenteral routes (intramuscular,
intravenous and epidural) because it is less invasive and has fewer risks of infection.
Syringe drivers (e.g. the Graseby Pump) are commonly used for a palliative approach in thehome-care setting to administer subcutaneous medications when death is imminent and otherroutes of administration (e.g. oral) are not appropriate. However, their use should be governedby the need for 24-hour administration of a medication and/or staff resource considerations.
Common issues regarding the use of syringe drivers, including practical advice and drug
compatibilities, are discussed in the Therapeutic Guidelines: Palliative Care.[109] RACFs needto develop strategies to facilitate ready access to a syringe driver (should one be required) andinformation on relevant medications. If more than one syringe driver is being used in a facility,
they should be of the same make and model to reduce the risk of error.
Where appropriate, members of the aged care team (including GPs) should be selected fortraining in the setting up and maintenance of syringe drivers. Local community palliative
services and the syringe driver manufacturers should also be contacted where necessary to assist
in developing syringe driver strategies and protocols.

14.4 MANAGEMENT OF END-OF-LIFE CARE
Although most end-of-life care can be provided in the RACF, if a resident’s symptoms remain
uncontrolled the aged care team should consult the nearest community palliative service. It isalso important to clarify the wishes of the resident and their family concerning hospitalisation.
Ideally, residents should remain in their familiar environment (i.e., the RACF), provided theaged care team has access to the necessary resources for optimal symptom management. (See
Section 2.3, ‘Where can a palliative approach be provided?’ for further information on thesuitability of RACFs to provide a palliative approach).

14.4.1 Pain and discomfort
When death is imminent, the resident’s comfort is paramount. However, it is a myth that
uncontrollable pain frequently develops in the last hours of life when it has previously not been
Guidelines for a Palliative Approach in Residential Aged Care165

a problem[401] (Level EO). (Information on the pharmacological and non-pharmacologicalmanagement of pain has already been provided (see Section 6.2, ‘Pain management’) and is
not restated here). All residents who are dying are at risk of rapid skin breakdown, and theassociated discomfort should be avoided by proactive management. If turning the resident
to relieve pressure causes them distress, then turning should be avoided, unless the positionchange ultimately leads to greater levels of comfort[402] (Level EO). (See also Section 6.10, ‘Skin
integrity’, for further discussion of skin care and the use of special mattresses). However, it isalso important to consider the close tactile comfort of gentle repositioning. For a very small
number of residents with advanced cancer there is a risk of catastrophic terminal haemorrhage(e.g. erosion of a large artery). Planning for this event is important so that if haemorrhage
occurs then medications to lessen pain and agitation are readily available. An opioid such asmorphine and/or a benzodiazepine such as midazolam are recommended.[109]14.4.2 Delirium, restlessness and sedation
Delirium is commonly associated with agitation or restlessness. However, there are difficulties
with defining restlessness and delirium[403] (Level EO). (See Chapters 5, ‘Advanced dementia’ and7, ‘Psychological support’ for further discussion of issues relevant to cognitive impairment). Yet, if
delirium goes undiagnosed or is poorly managed then the family and health care practitioners will
have unpleasant memories of the resident’s death[327,404] (Level QE; Level III-2). Common signs ofdelirium and restlessness include:• pulling at bed clothes;• frequent changes of position (being unable to relax physically);• myoclonus;• moaning; and• calling out (often incoherently)
Management of delirium involves addressing reversible causes (such as urinary retention andconstipation) and medication side effects.[404] The common pharmacological intervention fordelirium is haloperidol and the benzodiazepine drug, clonazepam.[109] Clonazepam is a longacting agent and can assist in easing restlessness. It can be administered in droplet format
sublingually or subcutaneously. Sedation in end-of-life care is warranted when symptoms
are unrelieved (including existential or psychological distress). There are, however, various
levels of sedation, and medications should be titrated according to effect[405,406] (Level III-3;
Level EO). For recommended doses of sedating medications see the Therapeutic Guidelines:
Palliative Care.[109]14.4.3 Respiratory secretions
Respiratory congestion — the ‘death rattle’ — is usually evident when residents approaching
death cannot clear upper respiratory tract infections. This occurs in approximately 92% of
people who are dying[407] (Level EO). Although most residents who experience respiratory
congestion are likely to be unconscious, it has been suggested that uncontrolled respiratory
congestion may contribute to dyspnoea and restlessness.[403,405] Furthermore, uncontrolled andexacerbating respiratory congestion can cause distress to families [240,405] (Level IV; Level III-3).

166 		 Guidelines for a Palliative Approach in Residential Aged Care

Treatment involves changes in positioning and use of medications[159] (Level EO). Althoughsuctioning may be appropriate where there are copious thick secretions in the upper airways,
routine suctioning is not recommended. Medications such as hyoscine hydrobromide or
atropine sulphate may be helpful.[109] If respiratory congestion is present in a resident who does
not appear to be imminently dying, then a diagnosis of cardiac failure needs to be considered.

14.4.4 Dyspnoea and changes in breathing patterns
As the resident’s death approaches, breathing patterns may alter significantly, ranging fromslow to irregular to rapid. Cheyne-Stokes breathing is usually associated with apnoea,
followed by a period of rapid breathing. Family members need to be advised that thesechanges in breathing are a normal part of the dying process, and should be reassured thatthe resident is not necessarily distressed by these changes[239,241] (Level II; Level QE). A small
proportion of residents may benefit from oxygen therapy; however, the need for this should
be comprehensively assessed before commencement and its effectiveness closely monitored[243](Level EO). The decision to administer oxygen should be made by the GP, who should alsoprescribe the appropriate rate. Recommendations on the use of oxygen therapy for end-of-lifecare are given in the Therapeutic Guidelines: Palliative Care.[109] (See Section 6.12, ‘Dyspnoea’,
for a further discussion of oxygen therapy).

14.4.5 Elimination issues
Urinary output decreases as death approaches. Urinary retention should be considered if theresident is restless. If catheterisation is required to relieve retention, it does not necessarily
follow that the catheter should remain in situ. Routine catheterisation for residents who are
dying should be avoided as it may cause unnecessary discomfort. Incontinence can usually be
managed with absorbent pads[408] (Level QE).
The other important consideration is the resident’s dignity; for example, what does ‘dying with
dignity’ mean to this particular resident and their family? Wherever possible, even when death
is imminent, the aged care team should arrange a family conference to explore the resident’s
and/or family’s wishes, fears and anxieties. Cultural and spiritual needs should also be formallyevaluated, particularly if a frank discussion of death is culturally inappropriate.

14.4.6 Family conference
It is important for the resident and the family to be prepared for the resident’s death, and forthis a family conference is recommended[308] (Level III-2). Such a conference needs to takeplace in privacy and in an appropriate setting for discussion to occur. During the conference
the resident and family need to understand that the emphasis at this stage of life is on ensuring
comfort and that the palliative approach does not mean withdrawing care[309] (Level QE).
Families appreciate when aged care team members are ‘doing everything’ for a person who isdying such as comfort care, educating and informing the family, and providing appropriate
medications[241,409] (Level QE; Level QE). Care encompasses knowing what to do as well as
how to stay present during suffering[409] (Level QE). The conference also permits a reciprocal
exchange of information and can help educate family members on what to expect. Typicalquestions that families may have include:

Guidelines for a Palliative Approach in Residential Aged Care167

• What are the signs that death may be imminent?
• What are the usual changes to the body when dying?
It would be appropriate to initiate a discussion of the common changes that occur when death
is imminent, if the family have not already raised these questions.
Other important issues to raise include the following signs that may be observed in the person
who is dying:• a decrease in consciousness;• an inability to swallow;• changes in breathing patterns;• peripheral shutdown; and• incontinence.
Assurance should be given that the resident’s comfort will be the primary goal of care. Somequestions the family may ask at this point include:• Can we talk to them? (It should be presumed that the resident can still hear them even when
death is imminent.)• Can we hug them (or hold hands, touch, play music, bring the grandchildren, etc)?
• What will happen to their body after they’ve died? (Assurance needs to be given that the
body will be cared for in a dignified and culturally appropriate manner).

14.4.7 Site of care
When the resident is in a shared room, the aged care team need to ensure that the choices of
the resident and their family, and of other residents and their families, are respected wherever
possible. Often the resident and family members may prefer to maintain the company andcomfort of others in the same room. A resident who is dying should not be moved without
prior consent of the resident and/or the family, except in an emergency.
Other options may include transfer to:• an inpatient hospice if appropriate care is not available in the RACF;• a single room in the RACF (depending on resident’s or family’s choice and availability of rooms);• a more private space for selected periods of the day or night (depending on resident’s orfamily’s choice and availability of space); and• their home for the final days (as long as there is adequate community support services, e.g.
palliative care, and making sure to keep the RACF bed open, within the requirements of thelegislation, in case re-admission is needed. Home care may be an important option to explore
for some residents and families, empowering them in their decision-making role. For others,of course, it may be inappropriate to discuss the option of home care).

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14.5 PREPARING FOR IMMINENT DEATH — PRACTICALCONSIDERATIONSFormalised plans aid the provision of optimal end-of-life care. To this end, the following list
contains various tasks or concerns that may require attention from the aged care team. The list
is only a suggested guide and provides a starting point for RACFs needing to develop policies
and practices on preparing for a resident’s death:1.

Check for documentation of advance care plans, particularly regarding preferences for siteof care and resuscitation orders.

2.

Check availability of the GP, including after hours. If pertinent ask that the GP visit toconfirm the likelihood of imminent death.

3.

Determine if the local community palliative service has the capacity to provide a
consultancy service if required.

4.

Check that all equipment, drugs, etc, are readily available and accessible, especially after hours.

5.

Consider dignity issues (e.g. What is the most appropriate clothing for the resident— day clothes or bed attire — and would they prefer to remain in their bed or betransferred to a chair?).

6.

Consider the physical comforts and needs of family members and other visitors.
This might include information and assurance regarding 24-hour visiting.

7.

Confirm the proposed funeral plans with key family members.

8.

Confirm contact details and the family’s preferences for visiting (particularly at the time ofdeath and/or immediately after death).

14.6 SIGNS OF DEATH
The following list provides a guide to the common signs of death. These may be particularly
beneficial for family members or carers who ask for an explanation of the signs of death. Not all
the signs should be discussed, only those that seem appropriate to the particular circumstances.
Near the time of death:• there is an absence of pulse;• breathing ceases;• the pupils are fixed and dilated;• the body becomes pale;• body temperature decreases;• muscles and sphincters relax;• urine and faeces may be released;• eyes may remain open;• the jaw may fall open; and• trickling of fluids internally can be heard from the resident’s body.
(Adapted from Ferris, von Gunten and Emmanuel, 2003)[401] (Level EO)

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14.7 CARE AFTER THE RESIDENT HAS DIEDThe aged care team needs to be familiar with the details of relevant legal requirements, whichvary among the States and Territories. The Therapeutic Guidelines: Palliative Care[109, p. 106]
indicate that when a death has occurred:• a determination must be made that life is extinct. This may be performed by a GP or an RN
in some states, or only by a GP in other states;• a Certification of Death must be completed. This does not have to be done by the GP who
pronounced life extinct, but the treating medical practitioner is usually the one to complete
this document; and• if there is uncertainty about the cause of death (e.g. if there has been a fall that may havecontributed to the resident’s death), then the coroner may need to be informed.
However, as the legal requirements do vary throughout Australia, each RACF should
formulate their own policies and procedures, depending on legal requirements and theirlocal circumstances. These should be developed with a view to being sufficiently flexible toincorporate diverse cultural and spiritual issues. Policies and procedures might include:• determining that death has occurred;• notification of death (dependent on State or Territory legislation, cultural issues, and RACF
policy). This may also vary according to the RACFs proximity to an acute hospital and/or
other services. The procedure would include the order in which people should be notified(e.g. GP, family, funeral director, senior management);• notifying other residents, family members and the aged care team about the resident’s death;• the role of the GP (e.g. in relation to signing the death certificate);• care of the resident’s clothing and belongings;• giving the resident’s family and the aged care team the chance to say their farewells before
the resident’s body is removed (cultural practices and personal wishes should also be given
preference). The need to provide formal debriefing for the aged care team should also be
included when drafting policies and procedures;• how to care for the resident’s body after death, including acknowledging cultural sensitivities
and family wishes, removing equipment from the body, and removing the body from the
RACF (having first determined that the coroner does not need to be involved);• funeral preparations; and• evaluating outcomes of care delivery.

14.8 SUMMARY
There is no one approach to caring for someone whose death is imminent. Although various
strategies and interventions have been suggested, the circumstances will always vary. However,with comprehensive assessment and a multidisciplinary team approach, residents dying in RACFs
can receive the best of care. This does not occur without advance planning and appropriate

170 		 Guidelines for a Palliative Approach in Residential Aged Care

education of the aged care team and families, supported by clear policies and procedures. Theseelements contribute to family members’ increased confidence that the aged care team will meetthe needs of residents who are dying by respecting their choices wherever possible.
In order to respect the resident’s and family’s end-of-life choices, it is important to reassess thesituation when death seems imminent. With careful planning, a conference can be arranged
with the aged care team, the GP and the family to make sure the goals of care are agreed on,
and to check that the resident’s preferences are respected. The time spent ensuring there is areciprocal exchange of information will contribute greatly to satisfaction with the outcome forboth the aged care team and the family, leaving positive memories for those who remain.
Guideline:

End-of-life (Terminal) Care
Ref No.

Evidence level74.

To be actively “doing everything” for a dying resident, in terms of
medication, positioning, and other medical and nursing interventions,
together with talking to, and spending time or being present with theresident helps family members cope with the dying process.

241, 409

QE

75.

Well planned family conferences, conducted in private and attended
by the GP and other members of the aged care team, provide an
opportunity for building trust and discussing end-of-life issues of concern,
which improves the family’s satisfaction with the care that is provided.

308
309

III-2
QE

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171

CHAPTER 15

BEREAVEMENT SUPPORTWhen a resident dies, loss and grief may be experienced by the aged care team, the family, and otherresidents. To assist in understanding bereavement, the following definition of terms is provided:• Loss is the severing or breaking of an attachment to someone or something, resulting in achanged relationship.
• Grief is the normal response to loss. It includes a range of responses: physical, mental,
emotional and spiritual. These are usually associated with unhappiness, anger, guilt, pain andlonging for the lost person or thing.
• Bereavement is the total reaction to a loss and includes the process of healing or ‘recovery’
from the loss. Although there are similarities in people’s responses, there are also marked
differences. Each person will grieve and recover in their own way.

15.1 CHARACTERISTICS OF GRIEF, LOSS AND
BEREAVEMENT
The models that are frequently used for grief assume that it is an illness; hence, grief reactions
become outcome focused (e.g. ‘the person will recover’). Such assumptions focus interventions
on an individual’s ‘deficits’, suggesting there is something ‘wrong’ with the person who isgrieving. However, grief can be unresolved, complicated or delayed and should not be regarded as
something to get over or recover from. The aim of grief counselling is not to prevent stress or totry to get the person to ‘let go’ or ‘leave the past behind’. Rather it aims to promote competence;
grief should be considered as a process that occurs during a person’s life cycle, so it is assumed thatpeople already have skills and abilities they can use to help them through the process.
Grief is a beneficial process as it can provide continuing bonds with the person who has died, andthese bonds are dynamic and changing. These bonds can provide continuity, comfort and solace.
It is impossible to predict how an individual will respond to the death of someone for whomthey cared. The following table provides some guidance as to how people make meaning of
their grief, loss and bereavement.

Guidelines for a Palliative Approach in Residential Aged Care173

Table 21: Grief, loss and bereavement indicators

Grief is felt according to
the individual’s:

Loss varies for each person, but
may include feelings of loss of:

Bereavement is not a simple
reaction to a single event, it is:•

Culture•A life•Emotional•

Family•A relationship•Social•Personality•

The role (their concept of ‘self’)
they had in a relationship•Economic•

Developmental stage(development neverstops — it is where you
understand self in relation
to others)•

A way of life•

Spiritual

The following table shows psychological characteristics of grief, though not all these will be
experienced by those who mourn.[410]
Table 22: Psychological characteristics in grief

Characteristic:

How it may be expressed:

Numbness or denial“This hasn’t really happened.”

Guilt“If only I had…” “I should have …”

Anger“Why did she do this to me?”

Sadness(Under denial, guilt, and anger is often a pervasive sadness.)“I am alone, and life will never be okay now.”

Ambivalence

Fluctuating between love and anger

Anxiety

Feeling of loss of control Tears flow with little
or no provocation A nervousness or sensitivity
to what others say, do, or do not do.

Unfairness“It’s not fair!”Intense yearning“I wish, I wish — Oh how I wish!”174 		 Guidelines for a Palliative Approach in Residential Aged Care

The following table outlines other common reactions to grief.
Table 23: Common grief reactions

MentalEmotional

Physical

Behavioural

Spiritual• Disbelief/
confusion• Preoccupation• Sense of thedead person’spresence• Hallucinations• Anxiety• Fear• Sadness• Anger• Guilt• Inadequacy• Hurt• Relief• Loneliness• Hollowness inthe stomach• Tightness in thechest (chest pain)• Tightness in thethroat• Digestive andrelated problems• Over-sensitivity• A sense of depersonalisation• Breathlessness• Muscle weakness• Lack of energy(or a deep andtotal fatigue)• Dry mouth• Insomnia• Loss of appetite• Crying• Sleep disturbance (eithera lack or an increased
need for sleep)• Sighing• Restlessness and overactivity• Appetite disturbances• Absent mindedness• Social withdrawal• Dreams of the deceased• Avoiding reminders ofthe deceased• Searching and callingout for the deceased• Visiting places andcarrying remindersof the deceased, ortreasured objects which
belonged to them

• Feelings ofanger• Feelings ofalienation fromGod
• Feeling thathope appears
lost• Feeling thatlife has lost its
meaning(See Chapter 12, ‘Spiritual support’, for further information about spiritual matters)

15.2 EXTREME GRIEF
People naturally experience grief after a death, but for some the reaction is so strong that it
moves beyond ‘normal’ grief to what is known as pathological or ‘complicated’ grief. In recent
years the criteria for complicated grief have been redefined.[411] Horowitz and colleagues(1997)[411] argue that some prolonged and turbulent grief reactions include symptoms thatdiffer from the DSM-IV[273] criteria for major depressive disorders. Consequently, the authors
have developed observer-based definitions of 30 symptoms[411] (Level QE). Complicated griefdisorder was characterised by a smaller set of the assessed symptoms. These include bereavement(loss of spouse, other relative or intimate partner) occurring at least 14 months ago (12 months
is avoided because of possible intense reactions around the anniversary date).
The following common experiences were also identified as characteristic of complicated griefdisorder:[411]• intense intrusive thoughts;• pangs of severe emotion;• distressing yearnings;• feeling incredibly alone and empty;

Guidelines for a Palliative Approach in Residential Aged Care175

• excessively avoiding tasks reminiscent of the deceased;• unusual sleep disturbances; and• maladaptive levels of loss of interest in personal activities.
However, it was suggested that the definition of complicated grief and the distinction between
complicated (or pathological) grief and normal grief is not straightforward and that there
is a critical lack of evaluation.[412] Given this lack of agreement of definitions, rather thandetermining the individual’s grief response it would be more appropriate for the aged care team
to be aware that some people require more support than others do when grieving.

15.3 ASSESSMENT
The risk factors identified for the need for bereavement support were circumstances; factors nearor at the time of death such as personal and social issues.[413] Kissane and colleagues (1997)[413](Level QE) suggest that bereavement support should start with assessment of family functioning
and promoting healthy functioning before the death occurs. This is supported by a study thatused measures of bereavement symptoms and psychological morbidity to predict symptoms ofgrief [414] (Level IV). Despite the importance of bereavement assessment, the evidence indicatesthat bereavement follow-up in palliative care services in various countries were less than idealand formalized risk assessment procedures were even less so[415,416] (Level QE; Level QE).
Assessing those who might need more bereavement support is essentially a ‘balancing act’, basedon observations, with clinical judgment and input from the aged care team, other residents, andfamily. The aged care team may feel that a person needs further support if:• the death was traumatic;• the death is less ‘real’ for them for some reason (e.g. unable to attend funeral, the deathoccurred overseas or interstate);• they believe the death was preventable;• they are ambivalent towards the person who died;• there is decreased role diversity;• they have decreased social support;• there are pre-existing factors (e.g. psychiatric disorder);• they are facing other crises at the same time; and• it was an overly prolonged death.

15.4 MANAGEMENT
The literature supports the effectiveness of bereavement services indicating increased emotional,
mental and physical stability of those who survive the death[417] (Level EO). For example,
spouses of patients who died in a hospice showed fewer signs of depression and anxiety andgreater social involvement at 12-months bereavement than hospital survivors[418] (Level QE).
However, there are few such services found in aged care facilities in Australia.

176 		 Guidelines for a Palliative Approach in Residential Aged Care

Kellehear (2002)[419] argues that the current focus of bereavement care puts the emphasis on
personal control and the ability to adapt to loss (Level EO). A new direction in bereavement
care stresses the importance of creating a supportive environment in the communities inwhich bereaved people live and encourages a renewal of meanings through transformation
instead of the previous ‘letting go’ of the attachment. In this light, skilled but unprofessional
bereavement workers can adequately manage bereavement care, if coordinated and supervised
by a professional bereavement worker. Social workers were found to be effective grief work
facilitators.[420] However, the role of the social worker in palliative care still needs to be qualified
by service receivers[323,420] (Level QE; Level QE).
Bereavement care in rural and remote areas has additional challenges to overcome such aslevels of stress due to role conflict and definition, and poor debriefing opportunities forcare providers, poor access to health services, poor quality of services for residents and theirfamilies[350,421,422] (Level QE; Level QE; Level IV). The evidence suggests that a bereavement
service that encompasses bereavement support and follow-up for any cause of death works wellin country areas[423] (Level QE).
Focused management of bereavement support reduces risk and improves bereavement
outcomes,[413,414] whereas untargeted support may not have such an overall beneficial effect[315](Level EO). Similarly, the aged care team will require increased awareness and knowledge about
grief and loss issues for residents, their families, and for other staff involved with the resident whodied. This increased awareness can enhance early identification of distress and implementation of
appropriate support[415] (Level QE). Cultural differences may also affect the ways in which people
respond to death (see Chapter 11, ‘Cultural issues’, for further information).

15.4.1 Public acknowledgment of death
Death is the ultimate rite of passage and needs to be marked in a public way[424] (Level EO),
such as a memorial service[425,426] (Level EO; Level EO). There is considerable anecdotal
evidence that suggests that a chance for family members to say ‘goodbye’ is crucial, especially
if they were not present at the death[315] (Level EO). This is also true for friends of the person
who has died, other residents of the RACF, and the aged care team[427–429] (Level EO; Level EO;
Level QE). Cultural differences may also affect the ways in which individuals respond to death[361,430] (Level QE; Level IV) (see Chapter 11, ‘Cultural issues’).
A WorkCover NSW report (2000)[431] (Level EO) indicates that a significant source of stressfor members of aged care teams was the issue of unresolved grief. Mourning rituals facilitate
psychological recovery and are helpful to aged care team members, who do not often attend to
the task of mourning because they are busy attending to the next resident’s admission[432,433](Level EO; Level QE). Memorial services are effective for facilities providing a palliative
approach. The evidence suggests that these services are a valuable resource for residents, family
members, the aged care team and volunteers and that memorial services are appropriate for thegrieving process[429,433] (Level QE; Level QE). The following story provides an example of amemorial service that included the use of a reflections book:

Guidelines for a Palliative Approach in Residential Aged Care177

Vignette 18: Reflections
When provided with a small reflections booklet after each resident’s death, staff welcomed
the opportunity to make a personal comment. Examples included, “Anna was a kind andaffectionate soul who despite her pain was grateful for the comfort we could provide.”“I remember Anthony was a trial at times, though I understood his frustration. I enjoyedhim very much on his good days and I’ll miss him and Leila.” “I will always remember Noelfor his huge smile and his beautiful, kind manner.”

However, formalised grief and bereavement services in RACFs are limited. One study foundthat 55% of RACFs sent sympathy cards, and 64% attended the funeral if the resident
died while in the facility[434] (Level QE). Most RACFs surveyed did not offer any follow-up
bereavement support, either in the form of information, referrals or phone calls[415] (Level QE).
Although families find bereavement support a positive experience[433,435] (Level QE; Level QE),
it has been suggested that if the focus is on ensuring the best care possible, families are more
likely to cope well with the death of their family member[413] (Level QE).

15.4.2 Bereavement support for other residents
The evidence suggests that the support needs of residents is often centred on practical andemotional support[429] (Level QE). It is interesting to note that, in addition to the expected
negative consequences, there can be benefits for other individuals who witness a death. For
example, hospice patients who witnessed a fellow patient’s death found this awareness of dying
to be both comforting and distressing[436] (Level III-3). The authors found that those that had
witnessed a death were significantly less depressed than those patients who had not had thisexperience. This finding is relevant for RACFs where concern has been expressed regarding theimpact of a resident’s death on those sharing the same room.

15.4.3 Bereavement support for the aged care team
The aged care team will likely experience loss following the death of residents with whom they
have established meaningful relationships[314,409] (Level QE; Level QE). Therefore the teamshould be provided with opportunities to formally acknowledge the loss, and have access toadequate bereavement support[429,437] (Level QE; Level QE). One study reported that membersof an aged care team who had experienced many deaths of residents reported being significantly
more comfortable when thinking and talking about death to residents who were dying[438](Level IV). However, these same people still had high levels of death anxiety when measured,
which led the authors to conclude that these members of the aged care team were more able toseparate their own anxiety from their willingness to discuss death and dying with residents. This
would appear to indicate that even members of the aged care team who have experienced many
deaths might still require access to support services in order to discuss their own anxieties[438](Level IV).
Emotional support for the aged care team could include bereavement support services, stressmanagement training, and debriefing sessions[22] (Level IV). Volicer (1997)[439] (Level EO)
argues for the inclusion of bereavement support in the aged care setting, as is the practice inmany palliative services (e.g. memorial services, debriefing meetings for the aged care team,178 		 Guidelines for a Palliative Approach in Residential Aged Carefollow-up visits to bereaved family members). For example, a simple ceremony, held annuallyin the RACF chapel (or lounge) can provide an opportunity for aged care team members to
acknowledge the life and death of the residents who died in the last 12 months. This represents
a public acknowledgment that each resident’s life and death has not passed unnoticed, but
remains recorded in the RACFs history.
These types of bereavement support should take into consideration all personnel that work at
the facility, as well as other residents and families. However, not everyone will feel the need toparticipate and this should also be respected.

15.4.4 Bereavement support for residents with advanced dementia
The mourning process is not exclusive to those who are cognitively able to manage the grieving
process. Residents with advanced dementia are also affected by grief and loss, but may nothave the cognitive skills to resolve or make sense of their grief. A resident’s fluctuating lucidity
may make it difficult for the aged care team and family to determine what the resident knows,
understands or comprehends regarding the death of another resident. Benbow and Quinn(1990)[440] (Level QE) recommended that the aged care team be honest and consistent withresidents, allowing them time to grieve even if they forget the details. Protecting residents fromthe truth can create greater confusion, because the story will not match the reality. Residents
with advanced dementia may need bereavement support for an extended length of time before
they can accept the reality of the loss.

15.4.5 Bereavement support for family members
Davidson (2003)[441] (Level EO) formulated an evidence-based protocol for family bereavement
support before and after the death of a resident that includes a number of bereavement support
interventions. One study assessed a range of psychosocial variables on family functioning
covering the experience of the illness, death and funeral, spousal health, family coping, sourcesof support, use of ritual, and completion of estate duties[413] (Level QE). The authors concluded
that the nature of family functioning was a key aspect of social support in influencing theoutcome of bereavement[413] (Level QE). In other words, the more social support the family
had access to, the better they could cope with the bereavement[399,414] (Level QE; Level IV).
Grief responses are more likely to be difficult for spouses of residents due to recent multiple
losses such as friends or family[442] (Level QE). Additionally, for those spouses who were notdepressed prior to the death of their partner are more likely to be vulnerable to depression postbereavement[324,443] (Level III-3; Level IV). A further concern is the development of emotional
loneliness, particularly for those older family members who have difficulty in making new
personal contacts due to social anxiety[444] (Level IV). These studies indicate the importance of
bereavement follow-up for family members, particularly when the resident has a spouse.
Often, listening to and understanding the multiple losses that a family member may haveexperienced acknowledges their loss and validates their feelings[409]. Providing families with theoption to stay with the resident during the night can help reduce their concern that the resident
will die alone. Having been present with the resident during the last stages of the illness may
also provide them with a sense of comfort as they will have witnessed the care provided, they

Guidelines for a Palliative Approach in Residential Aged Care179

may have been able to contribute to the care, and knowing that their family member did not
die alone[409] (Level QE). Accommodation, such as a portable bed, may be all that is required
to meet this need. The following story indicates the need for RACFs to formulate a systematic
approach to bereavement so that family expectations are clear.

Vignette 19: Mollie
Mollie had cared for her husband at home for eight years until his dementia made him
increasingly dependent and debilitated. She felt nothing but guilt and remorse becauseof the decision to have him admitted to residential care. Spending many hours of every
day assisting with her husband’s care, Mollie also made herself available to assist otherresidents, particularly with leisure activities. When her husband died, the aged care teamwondered how Mollie would cope, as she had no close family. Her husband, and now the
RACF, had become her whole life. “I used to feel guilty that I’d put him in here”, she said.
“Now I feel guilty that I didn’t take the step much earlier. He’s received such wonderfulcare, much better than I could have done at home. This is my second home.” When she was
asked, Mollie indicated that she had no need for formal bereavement counselling.
“No, I don’t want to talk to anyone, particularly a stranger. Everyone here understandsme.” Mollie continued to come to the RACF each day for several months, until she felt
ready to reshape her life in another context.

Many families also mourn the loss of relationship with the person with advanced dementia
and may require support in dealing with this ‘double death’. People with dementia have often
been termed ‘the living dead’ and family members, in particular spouses, find the progressive
degeneration difficult to watch and the grieving process is often protracted and painful[317,325](Level QE; Level QE). So difficult is the loss of relationship for a spouse whose partner has
advanced dementia they may classify themselves as a “married widow”[317,318] (Level QE;
Level QE).
RACFs that have a dementia support group in place where issues of grief and loss are addressed
may help provide families with the support they require. One study found that support groups
for bereaved seniors enhanced satisfaction with support given, diminished feelings of lonelinessand positively increased their emotional wellbeing[331] (Level IV). This study was conductedwith widows living by themselves in the community, so the findings, while pertinent to this
discussion, might not be applicable to males and younger people (e.g. children of residents);
hence there is a need for further research. Further research is also required to determine thesuitability of support groups in communal settings, such as RACFs, to assist residents to copewith the deaths of other residents.
Access to a confidant has also been found to be one of the best indicators as to whether a person
will require bereavement support[445,446] (Level EO; Level QE). If a person has at least one friend
in whom they can confide this enhances their resilience in successfully adjusting to bereavement.

180 		 Guidelines for a Palliative Approach in Residential Aged Care

Guideline:

Bereavement Support
Ref No.

Evidence level

76. Members of the aged care team can experience loss following thedeaths of residents with whom they have established meaningful
relationships. Therefore, they may require opportunities to formallyacknowledge their loss and access to adequate bereavement support
to reduce their levels of death anxiety and their risk of complicatedgrief. Aged care team members who have experienced many deaths
may still require access to these support services.

429,
433,
437

QE

77. A memorial service is a useful ritual to assist in bereavement
support of residents, family members, aged care team members,
and volunteers, because it facilitates the grieving process byacknowledging the lives and deaths of residents, which reduces levelsof death anxiety and the risk of complicated grief.

433, 435

QE

78. The greater the level of social support that a family can access, thebetter their ability to cope with the bereavement of their family
member; however, it is the quality of the support rather than thequantity that enhances this resilience.

414

IV

399, 413

QE

Guidelines for a Palliative Approach in Residential Aged Care

181

CHAPTER 16

Management’s rolein implementing apalliative approach

Managing an RACF requires a significant set of business and organisational skills. Regulatory
requirements have led to many facilities using management and business frameworks thatenable the processes of control, feedback and development to be handled systematically.
Frameworks such as business cycle planning and quality management systems enableorganisations to focus on their responsibilities and can lead to improved performance in thefacility[447] (Level QE).
Quality management systems aim to assure customers a consistent and improving level ofservice, while business planning ensures that operationally the organisation formally assesses
needs, revenues and resources. Integral to both processes is the role of communication withcustomers and with the aged care team.
Introducing a palliative approach is a strategic decision for an RACF in providing continuingcare for their residents through to the end-of-life. This will require the organisation to include
a palliative approach in their formal planning and monitoring cycles, and to commit theappropriate resources to its implementation. Among the resources required are aged care teammembers, management time, training and education costs, appropriate facilities, reporting
requirements and access to external supports.
Although education and training are essential elements of successful implementation of apalliative approach they may not, by themselves, bring about the desired change[448,449] (Level
QE; Level EO). Other factors have been identified as influencing the success of changing
practices. For example, a commitment of adequate resources is fundamental to implementingchanges in practices[6,450] (Level QE; Level QE). The organisational culture and leadershipin the operational area can also be important in introducing and sustaining change[451–453](Level EO; Level EO; Level EO). Therefore, boards of management should be included whentraining in a palliative approach is undertaken by RACFs, to ensure that the entire organisation
understands the philosophy of providing a palliative approach.
The context for the change and the process of facilitation can also affect the change
environment[373,454] (Level QE; Level EO). Time restrictions and a lack of appropriate members
for an aged care team have also been identified as impediments to change. Implementing apalliative approach in an RACF requires attention to these potential barriers, as well as focused
problem-solving.

Management structures and processes
There are many RACFs whose management has embraced a palliative approach to care. Some
examples of these include:

Guidelines for a Palliative Approach in Residential Aged Care183• having a section about a palliative approach in the RACFs public relations material(e.g. brochures);• advising all residents upon admission about the policies and procedures for implementing apalliative approach;• setting up relevant systems to enable referral to specialised palliative teams when required; and• developing formal mechanisms for involving all visiting GPs in formulating andimplementing palliative approach policies.
Guideline:

Management's role in implementing a palliative approach
Ref No.

Evidencelevel

79. Implementation of formal management systems in RACFs that support
the introduction and maintenance of a palliative approach through theallocation of appropriate resources will improve residents’ and families’
satisfaction and enhance the quality of care that the aged care team isable to provide.

184 		 Guidelines for a Palliative Approach in Residential Aged Care6, 447, 450

QE

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451. Kitson, A. (2001). Nursing leadership: bringing caring back to the future. Quality in
Health Care, 10, (Suppl. 2), 79–84.
452. Locock, L. & Dopson, S. (2001). Commissioning: when push comes to shove. HealthService Journal, 111, (5737), 28–29.
453. Manley, K. (2000). Organisational culture and consultant nurse outcomes: part 1.
Organisational culture. Nursing Standard, 14, (36), 34–38.
454. Rycroft-Malone, J., Harvey, G., Kitson, A., McCormack, B., Seers, K. & Titchen, A. (2002).
Getting evidence into practice: ingredients for change. Nursing Standard, 16, 38–43.
455. Commonwealth Department of Health & Ageing. (2002). Residential care manual.
Retrieved January 17, 2003, from the Australian Government Department of Health &Ageing Web site: http://www.health.gov.au/acc
456. Commonwealth of Australia. (2002). Draft national model care documentation system forresidential aged care. Canberra, Australian Capital Territory: Commonwealth Department
of Health & Ageing.

214 		 Guidelines for a Palliative Approach in Residential Aged Care

Glossary

acetaminophen
Acetaminophen is a non-opioid derivative analgesic for mild pain, which is more commonly
known in Australia as paracetamol. Because acetaminophen refers to paracetamol, this term
does not include other non-opioids such as Aspirin, Salicylates, or Naproxen.
advance care plans
Advance care plans are written documents that explain to aged care team members what a
resident has decided about how they want to face their own death. They are called advancecare plans, because the resident lets people know his / her wishes in advance. Ideally an
advance care plan involves an ongoing discussion with the resident, family, doctor andfacility to ensure that the resident’s and / or family’s wishes are current.
advance directives
Advance directives are formal, legally endorsed documents (usually termed ‘living wills’) thatstate instructions for care to be implemented in the event of future decisional incapacity.
advanced dementia
Advanced dementia is a neurologic disease characterised by severe cognitive decline ofan irreversible nature that is associated with poor prognostic factors such as swallowing
disturbance, weight loss, dysphagia, anorexia, bowel and bladder incontinence, and often
being bedridden.[83] This definition therefore, would include many of the residents in RACFs
because of their complete dependence on others for their activities of daily living.
aged care team
The term ‘aged care team’ includes non-professional workers in RACFs, such as careassistants, and professional workers, such as RNs, GPs and allied health practitioners(social workers, physiotherapists, diversional therapists, podiatrists, chaplains/pastoral care
workers, music therapists, etc). Volunteers may also provide aspects of care or play a rolein supporting residents and / or their families and as such volunteers or the coordinator ofvolunteers are considered part of the aged care team.
bereavement
Bereavement is the total reaction to a loss and includes the process of ‘recovery’ or healingfrom the loss. Although there are similarities in people’s responses, there are also marked
differences. Each person will grieve and ‘recover’ in her / his own way.

Guidelines for a Palliative Approach in Residential Aged Care215

cachexia
Cachexia is usually associated with a serious illness, such as cancer. The symptoms include
general ill health and malnutrition, marked by weakness and emaciation.
care assistants
When the term ‘care assistant’ is used in the guidelines, it refers to the wide range of nonprofessional workers in RACFs undertaking the direct care of residents. These workers have
many titles such as ‘assistant in nursing’ (AIN), ‘personal care assistant’ (PCA) or ‘aged
person carer’, depending on the State or Territory in Australia in which they are employed.
care plans
Care plans are dynamic documents that comprise a statement of the resident’s care needs
determined during assessment, with the addition of resident-centred goals, together
with strategies, interventions or actions that are intended to help the resident achieve or
maintain those goals.[455]carersCarers are usually family members and sometimes friends. Their work is based on a preexisting relationship and is unpaid and often unrecognised. The primary carer is the person
who has provided the most informal assistance to the resident in relation to self-care, mobility
and communication. When the word ‘family’ is used in the guidelines, it also includes carers.
chaplain / pastoral care worker
A chaplain / pastoral care worker is a person who works within a holistic approach to healthto enable individuals and groups to respond to spiritual and emotional needs, and to theexperiences of life and death, illness and injury, in the context of a faith or belief system. It
is considered best practice for such a person to be incorporated into the management ofresidents.
chronic illness
A chronic illness has a sudden or slow onset that is characterised by significant
exacerbations and a long, drawn-out duration.
cognitive behavioural intervention / therapy
Cognitive behavioural intervention is a psychological therapy (often known as CBT) that is
focused on changing particular thoughts or behaviour patterns, or acquiring specific coping
strategies. Included in this category is muscle relaxation training, hypnotherapy, systematicdesensitisation, biofeedback, and behaviour modification or reinforcement.
continuity of care
Continuity of care refers to the aged care team member’s maintenance of knowledge
about the resident and his / her family through consistent palliative practices to ensure that
optimal staff, resident and family outcomes are achieved.

216 		 Guidelines for a Palliative Approach in Residential Aged Care

coordinator of volunteers
A coordinator of volunteers is a person who is responsible for the recruitment, training,
placement and ongoing support of volunteers. The coordinator of volunteers also liaises withaged care team members to ensure that volunteer roles are clearly defined and meet theneeds of residents. (See also ‘volunteers’.)
copingCoping is the extent to which a resident is able to deal with the stress of daily life activities
and unusual challenges presented by chronic disease, disability, pain, frailty or other issues
brought about by the ageing process.
coping style
A coping style is the particular manner in which a person deals with stress, as is evidenced
by their behaviour, thoughts and feelings.
counsellingCounselling is a generic term that is used to cover the number of processes of interviewing,
testing, guiding, advising, which are designed to help an individual solve problems, plan for
the future, etc. There are differing levels of expertise depending on the practitioner’s training
and experience.
depression
Depression is a pervasive and sustained lowering of a person’s mood and demeanour.
Clinically, it is a cluster of symptoms which include tearfulness, guilt, irritability, loss of interestin life, loss of energy, poor concentration, poor sleep and either a gain or loss in weight.
dysphagia
Dysphagia is medical term for an inability to swallow food and / or liquids. Dysphagia
is associated with a large number of neurological conditions, such as cerebral vascular
accidents, Parkinson’s disease, dementia, multiple sclerosis and motor neurone disease.[104]The risk factors identified include neurological conditions, an altered state of consciousness,decreased cognitive ability, decreased alertness and attention span, increased impulsivenessor agitation, some medications, and advanced age.[104] Dysphagia should be managed inaccordance with the agreed goals of care as determined in collaboration with the resident,
their family and carers.
dyspnoea
Dyspnoea is an awareness of uncomfortable breathing that can seriously affect quality oflife and is frequently associated with the end stage of life.[160] The experience of dyspnoea
comes from multiple physiological, psychological, social and environmental factors that can
result in secondary physiological and behavioural responses.[239] Dyspnoea directly affects
all aspects of a resident’s activities of daily living, limits mobility, increases anxiety, and canleave residents feeling fearful and socially isolated.[239] Dyspnoea can also be a sign of adeteriorating condition in residents receiving a palliative approach.
Guidelines for a Palliative Approach in Residential Aged Care217

emotional adjustment
Emotional adjustment is the extent that a resident and / or her / his family has adapted
to the resident’s current circumstances, such as the process of ageing or living in an RACF,
and whether they have developed the resilience required to enable them to cope with thisadjustment. Emotional adjustment includes the resident’s and / or his / her family’s moods,
fears, anxieties, depression, self-esteem, sense of control, satisfaction with care, otherattitudes, personality traits, and various types of emotions or distress.
empathy
Empathy is the ability to acknowledge and understand another person’s feelings, needs,
experiences, and suffering.
end-of-life (terminal) careEnd-of-life (terminal) care is a form of palliative care that is appropriate when the resident
is in his / her final days or weeks of life. End-of-life care requires that the resident’s caredecisions are reviewed more frequently and that the goals of care are more sharply focusedon the resident’s physical, emotional and spiritual comfort needs, and support for the family.
familyFamily can be considered as any person who is part of the central core in the support
network of an individual, including carers. A definition of family is those individual’s who areclosest to the resident in knowledge, care, and affection. This definition, therefore, includes
the biological family, the family of acquisition (related by marriage / contract), and thefamily of choice and friends (not related biologically nor by marriage / contract). Based on
this definition, family could include carers, friends, neighbours, or the aged care team andextends the boundaries beyond biological and legal relationships. When ‘family’ is used in
the guidelines, it encompasses all the previously mentioned people.
genogram
A Genogram is a visual representation of who a resident considers they are close to andwhich people are the resident’s more distant supports. A Genogram helps the aged careteam to determine a resident’s prior social history, which can be helpful in understanding
the resident’s social networks.
geriatrician
A geriatrician is a specialist doctor who deals mainly with the physical aspects of a resident’s
condition, including function, cognition, and the social context. Geriatricians can assist withsymptom control for the resident who is dying, though a palliative specialist may have more
specialised knowledge in some circumstances. Involving Geriatricians as part of the careteam is most appropriate for those residents who are delirious, or who have a myriad of
medical problems.

218 		 Guidelines for a Palliative Approach in Residential Aged Caregeropsychologist
A geropsychologist is a psychologist who specialises in the assessment and management ofolder persons. Geropsychologists provide assessment, consultation and intervention services
related to psychological adaptations in later life (e.g. adapting to age-related changes,
bereavement), psychopathology (e.g. affective disorders, dementias), behavioural problems(e.g. wandering, aggressive behaviour, behavioural aspects of incontinence); problems indaily living (e.g. marital and family problems, coping with acute and chronic stressors);
medical and legal decision-making capacity (e.g. legal guardianship); independent living
arrangements; behavioural competencies (e.g. driving, management of medications, selfcare skills, financial management); and socio-cultural and socioeconomic factors influencing
the experience and expression of psychological problems. Distinctive interventions include
reminiscence and life review therapies, grief therapy, expressive therapies and psychoeducational programs for family caregivers.
graseby pump
A Graseby pump is a battery-powered syringe driver designed to administer a predetermined dose of injectable medication, usually opioids, over a specified period.
informed consent
In Australia, no medical services can be provided without the consent of the person
concerned. This consent is considered informed consent when the person agrees to atreatment without duress, voluntarily gives their consent after a reasonable time, and has
been provided with adequate information. The only exception to this is when the person’s
capacity to consent is impaired by a serious mental illness, in which case the relevant State
Mental Health Act can be invoked. If a family member has been granted a legal right tomake decisions for the resident, then the form stating this must be sighted by a member of
the aged care team and its powers and limitations noted on the resident’s record. The agedcare team can then be directed by this document as to how much information they are able
to share regarding the resident. As the legislation may vary regarding the responsibilitiesof people who are authorised ‘in advance’ by the resident as ‘Enduring Power of Attorney’(financial or medical) or ‘Enduring Power of Guardianship’, it is incumbent upon each RACF
to check legal requirements.
medical power of attorney
Medical power of attorney is the title given to a person who is legally appointed to makedecisions relating to the medical care of another. Managers of RACFs are directed to seek
independent legal advice regarding medical power of attorney.

Guidelines for a Palliative Approach in Residential Aged Care219

multidisciplinary teamMultidisciplinary teams consist of a mix of aged care, health and social welfare disciplines.
Team members share common goals, collaborate, and work interdependently in planning,problem-solving, decision-making, implementation and evaluation. Members of amultidisciplinary team could include GPs, surgeons, medical or radiation oncologists,
Aboriginal health workers, nurses, care assistants, coordinators of volunteers, dentists,
optometrists, psychiatrists, psychologists, social workers, physiotherapists, chaplains /pastoral care workers, volunteers, pharmacists, occupational or speech pathologists, or
palliative care specialists.
National Consultative Information-Sharing Network (NCISN)
The National Consultative Information-Sharing Network (NCISN) was a network of people
who provided services in the aged care or palliative industry and who indicated that they
were willing to be involved in the APRAC Project. NCISN members elected to contributeonline their experiences and thoughts regarding a palliative approach for residents in
RACFs. To participate in the NCISN, individuals completed an online registration at www.
apracproject.org.
non-pharmacological interventions
Non-pharmacological interventions are treatments that do not use drugs to alleviate
symptoms of the disease. Examples of non-pharmacological interventions include musicor art therapy, exercise, transcutaneous electrical nerve stimulation (TENS), massage,
aromatherapy and support groups.
nursesIn Australia there are currently two levels of nurses, the Enrolled Nurse (EN —trained
through the vocational education and training sector) and the Registered Nurse (RN— university trained). The development of a higher level within the RN group, the nurse
practitioner, is also at varying stages of development depending on the State or Territory.
Its distinctive traditions, skills, knowledge, values and qualities define nursing practice. The
use of the title ‘nurse’ is legally protected in all states and territories. When the term ‘nurse’is used in this document, it refers to anyone appropriately qualified as a nurse, such as thefollowing groups (this list is not exhaustive):• Nurse practitioners, nurse managers, nurse educators• RNs (general, specialist, Div 2), and•	ENs (RN Div1 in VIC).
oncologist
An oncologist is the specialist title of a doctor who treats cancer.

220 		 Guidelines for a Palliative Approach in Residential Aged Care

opioids
Opioid is a specific term used to describe drugs (natural and semi-synthetic) that are derived
from the juice of the opium poppy.
palliative approach
A palliative approach aims to improve the quality of life for individuals with a life-limiting
illness or who are dying due to the ageing process, and their families, by reducing theirsuffering through early identification, assessment and holistic treatment of pain, physical,
psychological, social, cultural, and spiritual needs. A palliative approach is not delayed until
the end stages of an illness or the ageing process. Instead, a palliative approach provides a
focus on active comfort care and a positive approach to reducing an individual’s symptoms
and distress, which facilitates residents and their families understanding that they are being
actively supported through this process. Underlying the philosophy of a palliative approachis a positive and open attitude towards death and dying.
palliative care
The World Health Organization’s (2003)[1] most recent definition of palliative care describes
this type of care as a palliative approach.
pharmacological interventions
Pharmacological interventions are treatments that involve the administration of drugs toalleviate symptoms.
problem-solving technique
Problem-solving technique is a strategy that involves developing a sequence of alternatives
leading to an intended goal or solution to a problem.
psychiatric disorders
Psychiatric disorders are mental disorders diagnosed by a psychologist or psychiatrist,
according to the Diagnostic Statistician’s Manual (DSM).
psycho-geriatrician
A psycho-geriatrician is a specialist doctor who deals mainly with the psychiatric aspectsof a resident’s condition. This would be particularly important when medication formed
part of a psychosocial intervention such as for a resident with clinical depression and the
management of disruptive behaviour secondary to dementia.
psychosocial needs / support
Psychosocial needs / support are the culturally sensitive provision of psychological, social,and spiritual care.

Guidelines for a Palliative Approach in Residential Aged Care

221

qualitative studies
Qualitative studies are usually descriptive and their aim is provide a context for people’s
experience and behaviours through analysis that is detailed, ‘rich’ and integrative. Examplesof qualitative studies include observational or case study methods that explore comparisons
within a group to describe and explain a particular phenomenon (e.g. comparative casestudies with multiple communities).
quality of life
Quality of life is defined as an individual’s perception of his / her position in life in thecontext of the culture and value systems in which he / she live, and in relation to her / hisgoals, expectations, standards and concerns. It is a broad-ranging concept, incorporating in
a complex way the person’s physical health and psychological state, level of independence,social relationships, personal beliefs and relationship to salient features of the environment.
quantitative studies
Quantitative studies generally use random assignment to compare the effect of anintervention between otherwise equivalent groups (for example, comparing a randomly
assigned group of aged care team members who took part in a palliative approachtraining program with those who did not). However, quasi-experimental studies, which
are also quantitative studies, make comparisons between groups that are not equal or
make comparisons within a group over a period of time (such as an interrupted time series
involving a pre-test and post-test).
randomised controlled trials (RCTs)
Randomised controlled trials (RCTs) are trials that are conducted using participants selectedin such a way that all known selective or biasing factors have been eliminated. The trial
involves the comparison of an experimental group with another group of participants, equalin all respects, who do not undergo the treatment being trialled.
residential aged care facilities (RACFs)
Residential aged care is for older persons who, for various reasons, can no longer live at
home. Residential aged care facilities (RACFs) are owned and operated by organisations
which have approval from the government to provide the personal and nursing care that aperson requires in accordance with their aged care assessment and the relevant legislations.
self-esteem / self-regard
Self-esteem or self-regard is how people perceive themself. This self-evaluation is generally
thought to influence an individual’s thoughts, feelings and behaviours.

222 		 Guidelines for a Palliative Approach in Residential Aged Care

specialised palliative team
A specialised palliative team is trained in the provision of a palliative approach. The
individuals work as a multidisciplinary team, providing specialist advice, education andsupport to residents requiring a palliative approach and / or aged care team members
providing this care.
support groups
Support groups are groups composed of people with similar problems or illnesses. A formallytrained, professional leader may lead these groups; however, depending on the purpose of
the group, this may not always be the case.
support network
A support network is a group of people who the resident considers provides for his / heremotional, psychological and practical care needs. A support network usually includes
family members and carers (see glossary definitions for ‘family’ and ‘carers’ for further
explanation).
therapeutic diets
Therapeutic diets are diets ordered by a doctor as part of a resident’s treatment to:•	Eliminate or decrease certain substances in the diet (e.g. sodium);•	Increase certain substances in the diet (e.g. potassium); or• Provide food that the resident is able to eat (e.g. a mechanically altered diet).
Examples include diabetic, low salt, low cholesterol, and renal diets.[178]volunteers
Volunteers are people who provide practical and emotional support for residents and theirfamilies. They undergo recruitment, orientation and training and may fulfil such roles as
making personal visits to the resident, listening, providing companionship and a supportive
presence, and general support. (See also ‘coordinator of volunteers’.)
Xerostomia
Xerostomia is an abnormal dryness of the mouth resulting from decreased secretion ofsaliva. Xerostomia can be caused by a number of things, including rheumatoid arthritis,
diabetes, kidney failure, infection with HIV (the virus that causes AIDS), drugs used to treat
depression, and radiation treatment for mouth or throat cancer.

Guidelines for a Palliative Approach in Residential Aged Care

223

APPENDIX A:

Working Party of the Australian Palliative
Residential Aged Care Project

LEAD CHIEF INVESTIGATOR
Professor Linda Kristjanson

The Cancer Council of Western Australia Chair of Palliative Care
Edith Cowan University

CHIEF INVESTIGATORS
Professor David Currow
Associate Professor Paul Glare
Professor Judith Parker AM
Associate Professor Kate White

Chair of Palliative and Supportive Services
Flinders University
Head, Palliative Care
Central Sydney Area Health Service
Head, School of Nursing
University of Melbourne
Head, School of Nursing & Public Health
Edith Cowan University

ASSOCIATE INVESTIGATORS
Professor Judith ClareMs Elizabeth Douglas
Mr Paul Cook

Ms Karen Glaetzer

Ms Pamela Harris
Dr Peter Hudson
Ms Yasmin Naglazas

Ms Ellen Nightingale
Ms Debbie Parker

Dr Jeff Rowland

Professor of Nursing
School of Nursing and Midwifery
Flinders University of South Australia
Director
Sir James McCusker Training Foundation
Chief Executive Officer
HN McLean Memorial Retirement Village (Currently working in residential
aged care)
Nursing Coordinator
Community Palliative Care Service
Southern Adelaide Palliative Services
Coordinator of Volunteers
Melbourne CityMission Palliative CareHead, Centre for Palliative Care Academic Nursing Unit
University of Melbourne
Director, Residential Care
Churches of Christ Homes and Community Service (Currently working inresidential aged care)
Palliative Care Consultant
Western Australia
PhD Candidate
School of Medicine
Flinders University of South Australia
Director of Aged Care
Liverpool Hospital

Guidelines for a Palliative Approach in Residential Aged Care225

Ms Wendy Shiels
Dr Jane Sims

Dr Christine Toye

Ms Helen Walker

Dementia Consultant
Victoria (Currently working in residential aged care)
Senior Lecturer in Primary Care
Department of General Practice
University of Melbourne
Postdoctoral Research Fellow in Palliative Care
WA Centre for Cancer & Palliative Care
Edith Cowan University
Manager, Palliative Care Education Centre/Volunteer Service Development
The Cancer Council of Western Australia

RURAL AND REMOTE PORTFOLIO
Associate Professor Ann Larson

Director
Combined Universities for Rural Health

TAFE PORTFOLIO
Ms Eugenie Jelly
Ms Diana Purcell

Central TAFE, Western Australia (Currently working in residential aged care)

PROJECT MANAGER
Mrs Jayne Walton

WA Centre for Cancer & Palliative Care
Edith Cowan University

PROJECT STAFF
Dr Margaret Behrndt

Mrs Ros Casey

Ms Penny Connellan

Dr Karen Cooper

Project Coordinator (Jul–Oct 2002)
WA Centre for Cancer & Palliative Care
Edith Cowan University
Secretary to the Project TeamWA Centre for Cancer & Palliative Care
Edith Cowan University
Research Officer, Literature Review
Southern Adelaide Palliative Services
Flinders University
Research AssociateCompetency Development Consultant
New South WalesPROJECT OFFICERS
Ms Jennifer Cooper (Aug–Nov 2002) Southern Adelaide Palliative Services
Flinders University
Ms Rhonda Devine (Sep–Dec 2002) Medical Psychology Research Unit
University of Sydney
Ms Kris Dwyer
Combined Universities for Rural Health Western Australia
Associate Professor Rosalie Hudson Aged Care Consultant
Victoria
Dr Elizabeth Lobb (Sep–Dec 2002) Medical Psychology Research Unit
University of Sydney
Ms Jennifer Tieman
Southern Adelaide Palliative Services(Nov 2002 onwards)
Flinders University

226 		 Guidelines for a Palliative Approach in Residential Aged CareRESEARCH ASSISTANTS
Ms Lara Andrews

WA Centre for Cancer & Palliative Care
Edith Cowan University

Ms Tara Blanchard
Ms Eva Cooper
Ms Natalie D’Abrew
Ms Address Malata
Ms Aurora Popescu
Ms Karen Rooksby

Guidelines for a Palliative Approach in Residential Aged Care

227

APPENDIX B

The Australian Government Project
Reference Group —Terms of Reference and Membership

TERMS OF REFERENCE
The project reference group will assist the project to achieve its objectives by:
1.
Providing comment and input to the overall project plan2.
Providing appropriate guidance and support for the project by ensuring the needs of their sectors arebeing addressed
3.
Providing comment on reports and other deliverables.

MEMBERSHIPDr Joanne Ramadge (Chair)
Ms Maria Bohan
Mr Michael Darragh
Ms Rita Evans
Associate Professor Sally Garratt
Emeritus Professor Ian Maddocks
Professor Margaret O’Connor
Ms Jill Pretty
Ms Alma Quick
Mr Ian Reed

Advisor, Ageing and Aged Care Division Australian Government
Department of Health and Ageing
Executive Director
Carers Victoria
Representing Australian Nursing Homes and Extended Care Association
Director, Palliative Care Section
Australian Government Department of Health and Ageing
Representing Royal College of Nursing Australia — Aged Care Nurses
Flinders University of South Australia
Representing Royal College of Nursing Australia — Palliative Care Nurses
Manager, Policy and Consultancy
Aged Care Services Australia
Director, Strategic Support Section
Australian Government Department of Health and Ageing
Representing Palliative Care Intergovernmental Forum

ADDITIONAL CONTRIBUTORSMr Chris Forsey

Ms Jeanne Mansbridge

Ms Chris Pusell

Assistant Director (2004)
Palliative Care Section
Australian Government Department of Health and Ageing
Assistant Director (2003)
Palliative Care Section
Australian Government Department of Health and Ageing
Assistant Director
Strategic Support Section
Australian Government Department of Health and Ageing

SECRETARIAT
Ms Wendy Cook

Project Officer
Palliative Care Section
Australian Government Department of Health and Ageing

Guidelines for a Palliative Approach in Residential Aged Care

229

APPENDIX C

An evaluation tool for
quantitative studies

APRAC GUIDELINES: EVIDENCE EVALUATION
Quantitative Study
Article No.________________________________________
Aim of the study: ___________________________________
Study design:______________________________________
Level of evidence:_________________

I
systematic review of all relevant RCTs
II
at least one properly designed RCT
III-1 well-designed pseudo-RCTs
III-2 comparative studies with concurrent controls and allocation not randomised,case-control studies or interrupted time series with a control group
III-3 comparative studies with historical control, two or more single-arm studies,or interrupted time series without a parallel control group
IV case series, either post-test or pre-test and post-test
Quality of methods used:43
2
1

excellent level of scientific merit and rigor
good level of scientific merit and rigor
fair level of scientific merit and rigor
poor level of scientific merit and rigor

Strength of evidence:
432
1

Evaluator/s:_________________

very highhighlowvery low

Relevance to APRAC project:
4321__________________________________

very relevant
relevantof some relevanceof little or no relevance

Guidelines for a Palliative Approach in Residential Aged Care231

APRAC GUIDELINES: EVIDENCE EVALUATION
Quantitative Study
Inclusion criteria:• Evidence based• Published in a peer-review journal, book chapters, government and non-government reports,• therapeutic guidelines, standards of care and other guidelines• Published between January 1990 and September 2004
• Published in English language• Originating in country with comparative health system to Australia• Originating in country with social or cultural similarities to Australia• Originating in a country where the residential care facilities fit with those in Australia
Exclusion criteria:• Articles not meeting the inclusion criteria above• Articles relating to community based programs rather than residential, aged or long term caresituations
Scoring:
Each article will be assigned a Level from I–IV as in the first section of the evaluation sheet.
The article will be rated regarding the quality and strength of the evidence as it relates to theparticular study cited — quality and strength will each be given a score out of 4.
The article will have a final rating score out of 4 according to its relevance to the Australian
Palliative Residential Aged Care project.
References:
Critical Appraisal Skills Program: 10 questions to help you make sense of Qualitative Researchwww.public-health.org.uk/casp/qualitative.html
National Health and Medical Research Council (2000) How to use the evidence: assessment andapplication of scientific evidence, Biotext, Canberra, Australia
The General Practice Section and Program Evaluation Unit (2000) The relative effectivenessof population health interventions in the general practice setting: Appendix C: Literature
Review Summary Appraisal, Department of General Practice & Public Health, University of
Melbourne, Victoria, Australia.

232 		 Guidelines for a Palliative Approach in Residential Aged CareAPPENDIX D

An evaluation tool for qualitative studies

APRAC GUIDELINES: EVIDENCE EVALUATION
Qualitative Study
Article No.
Yes = 1 No = 0
Aim of the study: Is the aim clear?

.......................

Paradigm: Is the paradigm appropriate for the aim:.......................

Quality of evidence:
Methodology: Is the methodology appropriate for the paradigm?

.......................

Methods: Are the methods used appropriate for the methodology?

.......................

Checking methods: Did checking methods establish rigor?

.......................

Sample: Did the sampling strategy address the aim?

.......................

Data Analysis: Was the data analysis appropriately rigorous?

.......................

Findings: Are the findings clearly stated and relevant to the aim?

.......................

Strength of evidence:4very high

3

high

2

low

1

very low

Relevance to APRAC project:4very relevant

3

relevant

2of some relevance1of little or no relevance__________________________________

Evaluator/s:

Guidelines for a Palliative Approach in Residential Aged Care233

APRAC GUIDELINES: EVIDENCE EVALUATION
Qualitative Study
Inclusion criteria:• Published in a peer-review journal, book chapters, government and non-government reports,
therapeutic guidelines, standards of care and other guidelines• Published between January 1990 and September 2004
• Published in English language• Originating in country with comparative health system to Australia• Originating in country with social or cultural similarities to Australia• Originating in a country where the residential care facilities fit with those in Australia
Exclusion criteria:• Articles not meeting the inclusion criteria above• Articles relating to community based programs rather than residential, aged or long-term caresituations
Scoring:
The article will be rated regarding the quality of the evidence as it relates to the particular study
cited — it will be given a score out of 8.
The article will have a strength and relevance (to the APRAC project) rating score, each ofwhich will be out of 4.
References:
Butler, T. (2002) personal communication, July.
Clare, J. (2002) personal communication, August.
Critical Appraisal Skills Program: 10 questions to help you make sense of Qualitative Research,
www.public-health.org.uk/casp/qualitative.html
National Health and Medical Research Council (2000) How to use the evidence: assessment andapplication of scientific evidence, Biotext, Canberra, Australia.
The General Practice Section & Program Evaluation Unit (2000) The relative effectivenessof population health interventions in the general practice setting: Appendix C: Literature
Review Summary Appraisal, Department of General Practice & Public Health, University of
Melbourne, Victoria, Australia.

234 		 Guidelines for a Palliative Approach in Residential Aged CareAPPENDIX E:

Summary of the stakeholder
participant groups

Employment category

Aged Care

Palliative Care

Both

Total

Aged Care (group submission)

12

-

-

12

Aged Care Representative

13

-

-

13

Care Assistant

8

-

-

8

Chaplain / Pastoral Care Worker

10

-

-

10

Clinical Nurse Consultant

3

10

5

18

Complementary Therapist

4

-

-

4

Consumer

6

2

-

8

Coordinator of Volunteers

5

9

1

15

Dementia Consultant

3

-

-

3

Director of Nursing / Care Manager

77

-

-

77

Diversional Therapist

4

-

-

4

Domiciliary Care Nurses

-

-

2

2

Educator / Trainer

4

-

2

6

Enrolled Nurses

11

-

-

11

Executive Officer / Senior Administrator

20

1

1

22

General Practitioner

-

-

8

8

Geriatrician

1

-

-

1

Government Department Representative

4

1

5

10

Medical Practitioner

-

7

6

13

Multicultural Specific Service

3

1

-

4

Nurse Educator

-

2

3

5

Nutrition Consultant

-

-

2

2

Peak Body (group submission)

3

-

2

5

Peak Body Representative

8

1

2

11

Policy / Project Officer

1

2

7

10

Registered Nurse

23

2

3

28

Registered Training Organisation

1

-

4

5

Volunteer

4

2

-

6

Wound Care Consultant

-

-

2

2

Not Specified

6

-

-

6

Total

234

40

55

329

Guidelines for a Palliative Approach in Residential Aged Care235

APPENDIX F:

Summary of the frequency with whichstakeholder groups participated in theguideline refinement process
Employment category

Focus#1 web

Useability

Newspapergroup(a)feedback(b)trial(c)feedback(d) feedback(e)#2 web

Total

Aged Care(Group Submission)

-

4

-

2

6

12

Aged Care Representative

8

2

-

-

2

13

Care Assistant

3

-

10

-

-

13

Chaplain / Pastoral Care
Worker

5

1

2

1

2

11

Clinical Nurse Consultant

14

1

-

-

3

18

Complementary Therapist

4

-

-

-

-

4

Consumer

4

3

-

-

1

8

Coordinator of Volunteers

8

2

1

-

4

15

Dementia Consultant

3

-

-

-

1

4

Director of Nursing /Care Manager

42

21

3

-

11

77

Diversional Therapist

2

-

2

-

-

4

Domiciliary Care Nurses

2

-

-

-

-

2

Educator / Trainer

4

1

-

1

1

7

numberEnrolled Nurses

4

-

6

-

1

11

Executive Officer /Senior Administrator

14

3

1

3

1

22

General Practitioner

7

1

-

-

-

8

Geriatrician

-

1

-

-

-

1

Government Department
Representative

8

2

-

-

-

10

Medical Practitioner

10

1

-

-

2

13

Multicultural Specific Service

3

1

-

-

-

4

Nurse Educator

4

-

-

1

-

5

Nutrition Consultant

-

-

-

-

2

2

Peak Body(Group Submission)

-

3

-

1

1

5

Peak Body Representative

5

1

-

-

5

11

Policy / Project Officer

6

2

-

-

2

10

Registered Nurse

12

2

9

1

4

28

Registered Training
Organisation

-

-

-

-

5

5

Volunteer

4

-

2

-

-

6

Wound Care Consultant

-

1

-

-

1

2

Not Specified

-

1

-

2

3

6

TOTAL:

176

55

36

12

58

337

Guidelines for a Palliative Approach in Residential Aged Care237

(a) FOCUS GROUP

Face-to-face meetings with stakeholder groups wereconducted in all states and territories. Rural and Remotestakeholder participation was obtained via teleconferences.

(b) WEB FEEDBACK

Responses that were received from stakeholders when the
Guidelines were first posted on the Project’s Website.

(c) USEABILITY TRIAL

Three RACFs were specifically chosen to include facilities
from metropolitan or rural and remote areas and which
offered either high or low care and ageing in place.

(d) NEWSPAPER FEEDBACK

As part of the NHMRC approval process, the APRAC Project
team was required to advise the public of the availabilityof the Guidelines and to request their feedback on thisdocument.

(e) #2 WEB FEEDBACK

Responses that were received from stakeholders when the
Guidelines were posted on the Project’s Website for thesecond and final time.

238 		 Guidelines for a Palliative Approach in Residential Aged CareAPPENDIX G:

An example of how the guidelines were
presented to focus group participants

GUIDELINES FOR THE PROVISION OF
PSYCHOSOCIAL SUPPORTPreamble: Palliative care focuses on the psychological, social and physical wellbeing of
the individual. There is evidence indicating that people with significant levels of physicalimpairment experience a clinically important depression with the prevalence being between
25% and 45% being reported [261,263]. There is also evidence that clinical depression among
the terminally ill may be under-treated because of beliefs that: all terminally ill patientsare depressed, depression is “understandable” and therefore not pathological, and treating
depression in the terminally ill is ineffective or may lead to intolerable side effects [64,261].
Guideline

Generally

Support withsupportrevision

No Support

Other comments

Providing for thepsychosocial needs ofpeople receiving palliative
care promotes improved
quality of life [263,271].
Psychosocial counsellingand psychiatricinterventions can improve
the psychological wellbeingof individuals in thepalliative care phase of theirillness [263,283].
Assessment and treatment
of depression and anxiety isan essential component ofpalliative care [58,63,64].
The provision of
personalised end of life
care in aged care facilities
can lead to improved
psychological care for the
resident [271,299,300].

Guidelines for a Palliative Approach in Residential Aged Care

239

APPENDIX H:

Useability trial — participant questions

Guideline 1: Families of residents with cognitive impairment need to be involved incare planning and provided with the opportunity to participate in decisions
about their family member.
Please indicate your response to the above proposed guideline by ticking yes, no, or not
sure (only chose one) for each of the following questions (you may also provide a commentshould you wish):NO.

QUESTION

1

Is the guideline clearly written?

2

Can you easily understand theguideline?

3

Is the guideline complete?

4

Does the guideline need any changes
before it is introduced? (If so, what
do you suggest?)

5

Is there anything that would stop
this guideline from being applied
where you work?

6

Does your facility already havesystems/programs in place thatwould make it easier to introduce
this guideline?

7

Could you begin to apply thisguideline to your work in the next 12months?

8

Would you need further education/
training before you could apply thisguideline to your work?

9

Would other staff need further
education/training before they could
apply this guideline to their work?

10

Would management need to change
before this guideline could be
introduced at work?

YES

NO

NOT SURE

COMMENTS

Guidelines for a Palliative Approach in Residential Aged Care

241

APPENDIX I:

Resource list

PALLIATIVE CARE SERVICES
National Office of Palliative Care Australia
Suite 2, 37 Geils Court
DEAKIN ACT 2600(02) 6232 4433
pcainc@pallcare.org.au
www.pallcare.org.au

AGED CARE SERVICES
Aged and Community Services Australia
Level One, 36 Albert Road
South Melbourne VIC 3205
(03) 9686 3460
info@agedcare.org.au
Australian Nursing Homes and Extended Care Association (ANHECA) Limited
Level 1, 25 Napier Close
Deakin ACT 2600(02) 6285 2615
office@anheca.com.au
www.anheca.com.au

PUBLICATIONSPalliative Care
Commonwealth of Australia. (2000). National palliative care strategy. A national framework for palliative care service
development. Retrieved August 28, 2002, from the Australian Government Department of Health & Ageing
Web site: http://www.mentalhealth.gov.au/programs/palliative/strategy.htm
O’Connor, M., & Aranda, S. (2003). Palliative care nursing: A guide to practice (2nd ed.). Melbourne, VIC: Ausmed
Publications, www.ausmed.com.au.
Palliative Care Australia (2004). Palliative care national directory 2004: palliative care services and hospices inAustralia, www.pallcare.org.au.
Bereavement risk
Aranda, S., & Milne, D. (2000). Guidelines for the assessment of bereavement risk in family members of people
receiving palliative care. Melbourne: Centre for Palliative Care.
Multicultural
Die-Trill, M. & Holland, J.C. (1993). Cross-cultural differences in the care of patients with cancer: a review. General
Hospital Psychiatry, 15(1), 21–30.
Hall, P., Stone, G., & Fiset, V.J. (1998). Palliative care: How can we meet the needs of our multicultural communities?
Journal of Palliative Care, 14(2), 46–49.
McNamara, B., Martin, K., Waddell, C., & Yuen, K. (1997). Palliative care in a multicultural society: perceptions ofhealth care professionals. Palliative Medicine, 11(5), 359–67.

Guidelines for a Palliative Approach in Residential Aged Care

243

Spiritual
Hermann, C.P. (2001). Spiritual needs of dying patients: a qualitative study. Oncology Nursing Forum, 28(1), 67–72.
Hume, S. K. (1991). Support in a time of need. The team approach at Mercy Medical Hospice addresses medical,
emotional, and spiritual needs. Health Progress, 72(7), 40–5, 54.
Thomson, J.E. (2000). The place of spiritual wellbeing in hospice patient’s overall quality of life. Hospice Journal,
15(2), 13–27.
Resources for both palliative care and aged care facilities
Hockley, J. & Clark, D. (Eds.) (2002). Palliative care for older people in care homes. Buckingham, UK: Open University
Press (enquiries@openup.co.uk, www.openup.co.uk).
Paris, M., & McLeod, A. (1999). Consider the options: end stage clinical care for chronic degenerative disorders.
Resthaven Incorporated (PO Box 327, Unley SA 5061, (08) 8373 0211).
Indigenous
Sullivan, K., Johnston, L., Colyer, C., Beale, J.,Willis, J., Harrison, J. & Welsh, K. (2003). Indigenous palliative care needs
study — final report. Canberra, ACT: Commonwealth of Australia.
Willis, J. (1999). Dying in country: implications of culture in the delivery of palliative care in Indigenous Australiancommunities. Anthropology & Medicine, 6(3), 423–35.
Multicultural
Palliative Care Australia. (1999). Multicultural palliative care guidelines. (Suite 2, 37 Geils Court, Deakin ACT 2600,(02) 6232 4433, www.pallcare.org.au)
Crawley, L.M., Marshall, P.A., Lo, B., & Koenig, B.A. (2002) Strategies for culturally effective end-of-life care. Annals ofInternal Medicine, 136, 673–79.
Jewish customs and practices, contact Mrs Vera Link, Vera_link@hotmail.com.
Volunteering
Volunteering Australia. (2001). National standards for involving volunteers in not for profit organisation(2nd ed.). Author. (Suite 2, Level 3, 11 Queens Road, Melbourne VIC 3004, (03) 9820 4100, www.
volunteeringaustralia.org, volaus@volunteeringaustralia.org)
Resources specific to aged care facilities
Outside looking in: A resource kit for aged care facilities. Carers Victoria (Level 5, 130 Little Collins Street, Melbourne
VIC 3000, (03) 9650 9966)
EthicsCode of ethical standards for Catholic health and aged care services in Australia. Catholic Health Australia (PO Box
330, Deakin West ACT 2600).
Department of Health and Ageing (2001) Code of ethics and guide to ethical conduct for residential aged care.
CommonwealthAvailable from www.health.gov.au.
Fleming, J.I., Tonti-Filippini, N. & Pike, G.K. (2001) An ethics handbook for aged care facilities. Adelaide, SA: South
Australia Network for Research on Ageing.
Nutrition
Bartl, R., & Bunney. C. (2004). Best practice food and nutrition manual for aged care facilities. Nutrition Department,
Central Coast Health (PO Box 361, Gosford NSW 2250, (02) 4320 3691).
Pain management
Australian Pain Society. (2004). APS Residential aged care pain management guidelines. Crows Nest, New South
Wales: Australian Pain Society.

244 		 Guidelines for a Palliative Approach in Residential Aged Care

Psychological
Challenge Depression—resource kit for meeting the challenge of depression in residential aged care.
Hammond Care Group (Sydney NSW, (02) 9825 5081).
NSW Health. (2000). Best practice model for the use of psychotropic medication in residential aged care facilities
and guidelines on the management of challenging behaviour in residential aged care facilities in New South
Wales. Available from www.health.nsw.gov.au.
Spiritual
Ronaldson, S. (Ed.) (1997). Spirituality: the heart of nursing. Ausmed Publications ((03) 9375 7311, ausmed@
ausmed.com.au).
Hicks, T.J.J. (1999). Spirituality and the elderly: Nursing implications with nursing home residents. Geriatric Nursing,20(3), 144–146.
MacKinlay, E. (2001) Health, healing and wholeness in frail elderly people. Journal of Religious Gerontology, 13(2),25–34.
Orchard, H., & Clark, D. (2001). Tending the soul as well as the body: spiritual care in nursing and residential homes.
International Journal of Palliative Nursing, 7(11), 541–546.
Wound care
Guidelines for Wound Care. Australian Wound Management Association ((08) 9431 2605, www.awma.com.au,
prentice@cyllene.uwa.edu.au).

PUBLISHERS
A series of books covering various topics on palliative care:
Oxford University Press
GPO Box 2784Y
Melbourne VIC 3001
1300 605 616
www.oup.com.au
Source National Breast Cancer Centre
PO Box 572
Kings Cross NSW 1340
Fax: (02) 9326 9329
www.health.gov.au/pq/cancer/nbcc.htm
Palliative Supportive Care
Cambridge University Press
Print ISSN: 1478-9515
Electronic ISSN: 1478-9523
www.cambridge.org
Insite: The Aged Care Industry Newspaper
DPS Publishing
433 Goodwood Road
Westbourne Park SA 5041
(08) 8272 5554
St Luke’s Innovative Resources
137 McCrae Street
Bendigo VIC 3550
www.stlukes.org.au

Guidelines for a Palliative Approach in Residential Aged Care

245

ENDURING POWER OF ATTORNEY AND GUARDIANSHIP
AUSTRALIAN CAPITAL TERRITORY
Office of the Community Advocate
PO Box 1001, Civic Square
Canberra ACT 2608
(02) 6207 0707
oca@act.gov.au
www.oca.act.gov.au
NEW SOUTH WALES
Office of the Public Guardian
Level 15, Piccadilly Tower
133 Castlereagh St
Sydney NSW 2000(02) 9265 3184
www.lawlink.nsw.gov.au
informationsupport@opg.nsw.gov.au
QUEENSLAND
Department of Justice and Attorney General(07) 3239 3520
mailbox@justice.qld.gov.au
www.justice.qld.gov.au/guardian
TASMANIA
Tasmania Department of Justice
The Guardianship and Administration Board is located at:
99 Bathurst St
Hobart TAS 7000
(03) 6233 3085
guardianship@justice.tas.gov.au
www.justice.tas.gov.au
VICTORIA
Office of the Public Advocate
5th Floor, 436 Lonsdale Street
Melbourne VIC 3000
(03) 9603 9500
WESTERN AUSTRALIA
Department of Justice
Office of the Public Advocate
1st floor, 30 Terrace Road
East Perth WA 6004
(08) 9278 7300 or 1800 807 437
www.justice.wa.gov.au

246 		 Guidelines for a Palliative Approach in Residential Aged CareAPPENDIX J:

Examples of advance directive
documents currently used invarious states

NOTE: These are examples only — please refer to your own State or Territory legislation.
THE ‘GOOD PALLIATIVE CARE ORDER FORM’[456]Include the names of family members and staff members who have been involved in discussions
regarding the patient’s condition and future care plan.
Under the Guardianship and Administration Act 1993 family members are able to makemedical decisions should there not be a guardian or medical agent. A family member includes
spouse, official de facto, parent, child over eighteen and sibling over eighteen.
Describe the patient’s condition and likely prognosis.
Identify if the patient is competent, that is, able to make decisions regarding their medical care.
Under the Consent to Medical Treatment and Palliative Care Act, patients can also write
down their wishes regarding their future medical care which come into effect only if they
are not able to make decisions regarding that care. Once sighted, these documents, called
anticipatory directions or advance directives, must be followed.
Select the option which best conforms to the patient’s, or delegate’s, desire for future medical
treatment. Should none of the three written options be appropriate, provision is made for
specific instruction under point four.
Identify how long you wish this document to be in force for and when you believe that itshould be reviewed.
Date the document, sign it and clearly print your name. This document should be signed by a
medical practitioner. It is expected that the care team will be consulted as part of its completion.
If using the accompanying sticker to indicate the existence of the Order in the notes, affix it to
the front of the case notes and note the date the Order is completed.

Guidelines for a Palliative Approach in Residential Aged Care

247

Good Palliative Care Order Form
Anticipatory Direction

Circle one of the options:_______________________________________We have agreed that in the event of further
deterioration in the patient’s condition:_____________________________________________________________________________________________________________________
I have discussed with patient_______________________________________
or with their medical agent_______________________________________(Please ensure the medical power of attorney, authorising
agent, is sighted.)

and/or family members or attending persons_____________________________________________________________________________________________________________________

1. 	Full cardiopulmonory resuscitation with total bodysupport as required will be undertaken
2. 	Intensive medical support will be undertaken, but
cardiopulmonory resuscitation will not be initiated,and no long-term support measures, including
ventilation or dialysis, will be undertaken
3. The emphasis of management will be on Good
Palliative Care, highlighting the relief of symptoms
and discomforts. No artificial measures designed
to supplant or support bodily function will be
undertaken
4. 	Other. Please specify:____________________________________________________________________________________________________________________________________________________________
This form will be in force for:_______________________________________

1 weekand with staff members

1 month_______________________________________

3 months_______________________________________

12 months
indefinitely_______________________________________or until revoked by the patient_______________________________________

Date: ___________________________________

the patient’s current condition, which can be
described as______________________________________________________________________________

Signed:__________________________________

Print name of legally qualified medical practitioner_____________________________________________________________________________________________________________________The patient is competent
Incompetent248 		 Guidelines for a Palliative Approach in Residential Aged Care

Schedule 1

MEDICAL POWER OF ATTORNEYCONSENT TO MEDICAL TREATMENT AND PALLIATIVE CARE ACT 1995
1. 	I,_ ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________(insert name, address and occupation)

appoint the following person(s) to be my medical agent(s):a._________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
b._________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
c._________________________________________________________________________________________________________________________________________________________________________________________________________________________________________(Set out name, address and occupation of the agent. If 2 or more agents are appointed, the order of appointment must be indicated byplacing the numbers 1,2,3…beside each name. This indicates that, if the first is not available the second is to be consulted, if the firstand second are not available, the third is to be consulted and so on. It should be noted that a medical power of attorney cannot provide
for the joint exercise of power. (See Section 8 (6) of the Consent to Medical Treatment and Palliative Care Act 1995)

2.	I authorise my medical agent to make decisions about my medical treatment if I should be unable to doso myself.
3.	I require my agent to observe the following conditions and directions in exercising, or in relation to the exercise
of, the powers conferred by this power of attorney:__________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________(here set out any conditions to which the power is subject and any directions to the agent)

4. This is an enduring power of attorney made under the:Consent to Medical Treatment and Palliative Care Act 1995______________________________________________________________________________(Signature of the person appointing the agent)

DATED the ______________day of ____________________________20_____

Guidelines for a Palliative Approach in Residential Aged Care

249

Acceptance of Power of Attorney
1. 	I,_ ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
2. 	I,_ ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
3. 	I,_ ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________(here set out name(s), address(es) and occupation(s) of medical agents(s))

accept appointment as a medical agent under this medical power of attorney and undertake to exercise thepowers conferred honestly, in accordance with the conditions and directions set out above, and, subject to that,in what I genuinely believe to be my principal’s best interests.
__________________________________________________________________________________________________________________________________________________________________________________________________________________________________________(Signature(s) of the medical agent(s))

Witness’s certificate
I, _____________________________________________________________________________(here set out name and address of the witness and the qualifications of authorised witness)certify:(a) that the grantor and grantee of the power of attorney signed it freely and voluntarily in my presence; and(b) both appeared to understand the effect of the power______________________________________________________________________________(Signature of JP, solicitor, member of clergy, pharmacist; or proclaimed bank manager, postal manager or police officer.)

DATED the ______________day of ____________________________20_____

250 		 Guidelines for a Palliative Approach in Residential Aged CareAPPENDIX K

An example of a Genogram

Died of breast
cancer aged
50

Died in the
war aged 30
Died of breast
cancer aged
45

Died of lungcancer aged
63
Georgia (38) Mary (45)John (45)SB

Jane (40)

Gilly (15)Key to symbols
Affected maleUnaffected male

Affected female

Unaffected female

One person, sex unknown
Dead
Identical twins

Nonidentical twins

Minimally or unaffected carrier or proven transmitter
No offspring, sterility, sterilization or reproductive period endedSB

Stillborn

ID

Infant death

Guidelines for a Palliative Approach in Residential Aged Care251

APPENDIX L

An example of an Ecomap

KEY:
thick line = strong connection
thin, broken line = tenuous connection
jagged line = stressful connection

Caregiving
Unit

Considerations:• who is in the network?
• proximity• what the do/could do• frequency of contact• quality of relationship• satisfaction with help
• changes in network

Family supports• immediate family—
spouse, parents, children• extended family—
siblings, cousins,
nephews/nieces, inlaws, former partners,
grandchildren, etc

Non-family informal
supports• friends, neighbours• work colleagues• community groups

Formal supports
For example community,
medical, private, volunteer,
residential.

Guidelines for a Palliative Approach in Residential Aged Care253

INDEX

Abbey Pain Scale 64, 71, 78
Aboriginal and Torres Strait Islanders
13, 73, 143–145
acupressure 11, 115, 86–87
acupuncture 11, 112, 115
acute care 40, 56
advance care planning 8, 56–60
advance directives 56, 247
advocacy 140
Aged Care Act 1997 15
aged care assessment teams 123–124
Alzheimer’s disease 3
analgesics 63, 73, 74, 79, 81
anorexia 69, 96
antibiotics 65
antidepressants 81, 121
antipyretics 65
anxiety 12, 38, 48, 117, 122–123, 127, 178
APRAC project see Australian Palliative
Residential Aged Care project
aromatherapy 112, 115

Australian Palliative Residential Aged Care
project — Reference Group 32, 33, 34,
229
Australian Palliative Residential Aged Care
project — Working Party 32, 34,
225–227
behavioural disturbances 112, 126
beliefs 143, 145
bereavement support 4, 173–181
bowel care 10, 106–108
bowel problems 69, 70
breakthrough pain see pain, breakthroughbreathing difficulties see dyspnoea
Brief Pain Inventory 77
cachexia 10, 96–97
CAM see complementary therapies
Campbell Collaboration 6, 20, 22
cancer 4, 42, 86, 162, 163
care planning 43
care plans 39
carers 38

artificial nutrition see enteral nutrition

catheterization 167

Assessment of Discomfort in Dementia
protocol 64

Certification of Death 170

attitude to death 4, 51, 119
Australian Medical Sheepskins 104

cerebrovascular accident 3
chaplains 154, 155
Cheyne-Stokes breathing 167

Australian Medicines Handbook 80

chronic obstructive lung disease 3

Australian Medicines Handbook Drug Choice
Companion: Aged Care 80

cleanliness 38
Cochrane Collaboration 6, 19, 20, 22

Australian Palliative Residential Aged Care
project 1, 5

Code of Ethics 55
codes of professional conduct 52

Guidelines for a Palliative Approach in Residential Aged Care255

cognitive ability 49
cognitive behaviour therapy 86

dementia 4, 8, 12, 57, 69, 91, 123, 124,
125, 126–127, 162, 163
assessment 62, 67

cognitive impairment 113
cognitive stimulation therapy 113–114

management 65–66

communication 7, 12, 37, 47, 55, 57, 65,
117, 130prevalence 61
pain 62–64, 73, 78

communication difficulties 4

symptoms 126

communication skills 70, 122, 149

dementia, advanced 61–67

communication, transcultural 148

D-E-N-T-A-L questionnaire 102

Community Services and Health Industry
Skills Council 34

depression 11, 38, 51, 70, 88, 117,
118–123, 127

co-morbidities 4, 38, 98

assessment 119–121

complementary therapies 11, 111–115

management 121–122

confidentiality 52, 140

prevalence 118

conflict 41

symptoms 118, 119

confusion 4, 117, 123–124

desire to die 51, 119constipation 69, 106, 107, 108

diet 90

continence 47

dignity 7, 49, 53, 169

continence see also incontinence

see also dying with dignity

coping mechanisms 151

Dignity-Conserving Care Model 47

Cornell Scale for Depression in Dementia
120

disabilities 37

corticosteroids 97

Discomfort Scale for Dementia of the
Alzheimer’s Type 63, 64

counselling 121

distress 9, 12, 48, 71, 88, 117, 127

CPOD see chronic obstructive lung disease

dying with dignity 42, 47

CSDD see Cornell Scale for Depressionin Dementia

dysphagia 10, 66, 70, 99–101

CSHIC see Community Services and HealthIndustry Skills Council

eating difficulties 66

cultural diversity 13
cultural issues 4, 13, 73, 144, 145, 147–150
death 169, 170, 177
decision making 40, 41, 55, 58
dehydration 9, 93–96
see also rehydrationdelirium 12, 123, 124–125, 127, 165

dyspnoea 11, 38, 69, 70, 109–111, 167
ecomap 131, 253
Edmonton Symptom Assessment Scale 71
end-of-life care 8, 14, 38, 56, 57, 65,
161–171
enduring health advocate 58
enduring power of attorney 52, 58
enduring power of guardianship 52
enteral feeding 9, 59, 60, 88, 90, 91–92, 93
ESAS see Edmonton Symptom
Assessment Scale

256 		 Guidelines for a Palliative Approach in Residential Aged Careevidence levels 5, 6, 20, 21, 22
evidence-based guidelines 4, 15

hydration 9, 94
see also dehydration and rehydration

exercise 86

hypnosis 11, 112, 115

Expert Opinion 23

illness, acute 65

FACES Scale 78

imagery 112

families 12, 57, 59, 66, 88, 96, 129–133,
150, 179

incident pain see pain, incident

family conferences 12, 14, 130, 132,
167–168, 171

independence 49

fatigue 9, 38, 69, 70, 85–87
feedback 33
feeding techniques 10, 100, 101
feeding techniques see also enteral feeding
fluid therapy 9, 94, 96
focus groups 28, 30, 31, 32, 239
food refusal see refusal of foodFreedom of Information Act 1986 52
Functional Incidental Training 108
Functional Pain Scale 77
GDS see Geriatric Depression Scale
genogram 131, 135, 251
Geriatric Depression Scale 11, 120
Geriatric Oral Health Assessment Index 102
gingko 11, 115
GOHAI see Geriatric Oral Health
Assessment Index
grief 14, 173, 174, 175, 177, 178, 179
Guide to Ethical Conduct for Residential
Aged Care 55
Guidelines for Decision Making at the Endof Life 55
Guidelines for Medication Management in
Residential Aged Care Facilities 165

incontinence 38, 108, 167
Indigenous Australians see Aboriginal andTorres Strait Islanders
infections 65, 67
informed consent 91, 92, 148
insomnia 70
intermittent pain see pain, breakthroughinterpersonal skills 41
interpreter services 148, 150
interventions 38, 88, 100, 121, 125, 163
intimacy 13, 136–141
intravenous fluids 88
Joanna Briggs Institute 19
language 148
laxatives 10, 107, 108
levels of evidence see evidence levels
link nurse 45
literature review 15–25, 231–234
living will 58
loneliness 38
loss of appetite 38
malnutrition 87–93
management roles 183–184
massage 11, 12, 13, 112, 115, 123, 141
mattresses 104

Guidelines on Privacy in the Private Health
Sector 52

McGill Pain Questionnaire 77

herbal remedies 113

memorial services 177, 181

Hopkins Symptoms Checklist 122

Mental Health Inventory 119–120

medication 164–165

Hospital Anxiety and Depression Scale 122

Guidelines for a Palliative Approach in Residential Aged Care

257

Mini Mental State Examination 123, 124,
126

Pain Assessment in Advanced Dementia
Scale 63, 64, 78

Mini Nutritional Assessment 90

Pain Descriptive Scales 78

morphine 11, 73, 110, 111

pain management 7, 8, 9, 11, 63, 69,
71–74, 79–84, 112, 114

mouth care 10, 60, 101–103
mucositis 69
multiculturalism 147
multidisciplinary team 43, 44
music therapy 112–113
nasogastric feeding see enteral feeding

family concerns 39, 130
pain rating scales 73
PAINAD see Pain Assessment in Advanced
Dementia Scalepalliative approach 3, 4, 21
in rural areas 42

National Consultative Information-Sharing
Network 27, 30, 31

management’s role 14, 183–184

National Health and Medical ResearchCouncil 5, 6, 26–27, 35, 40

when to implement 7, 37, 40, 41

National Palliative Care Strategy 1

who can provide 7, 43, 45

where to implement 7, 41–42, 43

nausea 70, 89–99

palliative care 3, 37

NCSIN see National Consultative
Information-Sharing Network

palliative care guidelines 25–26, 29, 32,
33, 34, 35, 241

NHMRC see National Health and Medical
Research Council

palliative services 38

non-steroidal anti-inflammatory drugs
81, 82

pastoral care workers 154, 155

NSAIDS see non-steroidal anti-inflammatory
drugs
Numerical Rating Scales 77
nurse practitioner 45
nutrition 87–93
nutritional problems 70
nutritional supplements 91
oedema of limbs 105
opioids 81, 82, 83, 107, 110
oral health see mouth careoral hygiene see mouth careorgan failure 162, 163
oxygen 110, 167
pain 38, 69, 72, 74, 75, 76, 77, 78, 79
pain assessment 8, 9, 62–64, 77, 78

paracetamol 81
PEG feeding see enteral feeding
Piper Fatigue Scale 85–86, 87
PLISSIT model 137–138
pneumonia 65
power of attorney see enduring power ofattorney
pride 49
privacy 50, 52, 139
Privacy Amendment Act (Private Sector) 2000
52
privacy legislation 52
prognosis 40
psychological support 117–133
psychostimulants 121
qualitative studies 21
quality of life 3, 7, 9, 12, 47, 50, 53, 89,
112, 151

258 		 Guidelines for a Palliative Approach in Residential Aged Carerandomized controlled trials 5, 21

System of Belief Inventory 151

RCT see randomized controlled trials

TENS 11, 84, 112, 115

rebreathing 11

terminal care see end-of-life carerefusal of food 59–60, 87, 89

Therapeutic Guidelines: Palliative Care 69,
74, 84, 165

refusal of treatment 55, 56
Registration Acts 52
rehydration 94, 95
see also dehydration
relationships 135, 180
relaxation 11, 112, 115
religion 151
Residential Aged Care Pain Management
Guidelines 63
resilience 49
respiratory congestion 166
restlessness — in end-of life phase 165
restraints 8, 66, 67
rural areas 31, 32, 42, 127, 130, 177
rural stakeholders see stakeholders
SBI see System of Belief Inventory
sedation 165
self-reporting 73, 74, 77, 85

transfers 42, 56, 58, 59, 130, 168
treatment options 56–57
ulcers 10, 69, 104, 106
unconsciousness 39
urine retention 167
Verbal Rating Scale see Pain Descriptive
Scale
Visual Analogue Scale for Acute Confusion
123
Visual Analogue Scales 78, 122
volunteers 14, 157–159
vomiting 98–99
weakness 39
weight loss 10, 39
WHO Analgesic Ladder 80, 81
workshops 34
wound care 105–106

sexuality 13, 136–141
side effects of drugs 82, 83, 88, 98
skin integrity 10, 104–106
social support 12, 14, 50, 135–136, 141
spiritual support 13, 49, 151–154
spouses 133, 180
staff skills 44
stakeholders 26, 31, 32, 33, 235, 237–8
standards 15
strength training 84
suicide 11, 51
support groups 180
swallowing difficulties 39
Symptom Assessment Scale 71
symptoms, management of 8, 41, 69–71

Guidelines for a Palliative Approach in Residential Aged Care

259

Guidelines for a Palliative Approachin Residential Aged Care
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