According to your readings, what is a “good death?”
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
Hospice Friendly Hospitals
Programme
National Council on
Ageing and Older People
Irish Hospice Foundation
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Dublin 2
11th Floor
Hawkins House
Hawkins Street
Dublin 2
www.hospicefriendlyhospitals.net
www.ncaop.ie
End-of-Life Care
for Older People
in Acute and
Long-Stay
Care Settings
in Ireland
End-of-Life Care for Older People
in Acute and Long-Stay Care
Settings in Ireland
Eamon O’Shea, Kathy Murphy, Philip Larkin, Sheila Payne,
Katherine Froggatt, Dympna Casey, Áine Ní Léime and Mary Keys
Irish Centre for Social Gerontology, National University of Ireland, Galway
Hospice Friendly Hospitals Programme
Irish Hospice Foundation
32 Nassau Street
Dublin 2
National Council on Ageing and Older People
11th Floor
Hawkins House
Hawkins Street
Dublin 2
© Hospice Friendly Hospitals Programme and
National Council on Ageing and Older People, 2008
ISBN 1 900378 54 X

End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
Foreword
The National Council on Ageing and Older People (NCAOP) and the Irish Hospice
Foundation (IHF) are pleased to present this report, End-of-Life Care for Older
People in Acute and Long-Stay Care Settings in Ireland. The report details the
results of research that focuses, for the first time in Ireland, on the quality of
life and quality of care at the end-of-life for older people in various care settings
including acute hospitals, public extended care units, private nursing homes,
voluntary nursing homes and welfare homes.
The report provides a new model for care at the end-of-life which goes beyond
specialist palliative care provision to embrace a compassionate approach that
supports older people who are living with, or dying from, progressive, chronic and
life-threatening conditions, and attends to all their needs: physical, psychological,
social and spiritual.
Every person’s end-of-life trajectory is different and needs differ in intensity and
quality over time. The NCAOP and the IHF believe, therefore, that end-of-life care
must adapt to the varying and changing needs of the individual over time and that
it cannot be limited to certain settings or services. The provision of good end-of-life
care should be driven primarily by the concern to enhance quality of life at end-oflife, and should encompass all of its determinants and components.
The report also provides a comprehensive account of current legal issues
surrnounding end-of-life decision-making in Ireland. In this regard, the NCAOP and
the IHF agree that a robust legal framework is required to guarantee autonomy in
decision-making, which is important for quality of life at end-of-life.
The study raises many important issues for policy-makers and for service planners
and providers. Most fundamentally, however, it raises the question of the value
placed by our society on how its members are supported and cared for at the
end of their lives. The process of dying is reflective of broader social values and
the study findings suggest that neglect of end-of-life care for older people may
reflect ageist attitudes in our society. Clearly, the eradication of ageism in all its
manifestations must be a primary concern for leaders in society and all those
charged with promoting equality of treatment for all.
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland

The NCAOP and IHF would like to thank Prof. Eamon O’Shea, Prof. Kathy Murphy,
Mr Philip Larkin, Prof. Sheila Payne, Dr Katherine Froggatt, Dr Dympna Casey,
Ms Áine Ní Léime and Ms Mary Keys for their commitment and dedication to
this study. Thanks are also due to the members of the Consultative Committee:
Ms Breda Hayes, Ms Orla Keegan, Dr Mary Cosgrave, Dr Michael Loftus, Mr Pat
O’Toole, Ms Julie Ling, Dr Davida de la Harpe, Ms Mo Flynn, Mr James Conway,
Mr Pat Quinlan, Ms Caroline Connelly, Mr Peter Gerard Lawlor, Mr Mervyn Taylor,
Mr Bob Carroll and Ms Gabrielle Jacob.
Finally, the NCAOP and IHF would like to extend their sincere thanks and gratitude
to all those who participated in the study, and particularly the older people and staff
members who shared their thoughts, stories and experiences so generously.

Dr Ciarán F Donegan
Mr Denis Doherty
Chairperson
Chairperson
NCAOP
IHF
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
Authors’ Acknowledgements
The researchers would like to thank the NCAOP and the IHF who jointly funded
this project, as well as the Consultative Committee associated with the project
who provided support throughout the research process. We would also like to
thank the participants at the seminar during which the preliminary findings were
presented.
Special thanks to Karen King who was project manager on the project. Thanks also
to Sinead O’ Hara who provided support with the statistical analysis. Thanks to
the following colleagues from the School of Nursing and Midwifery at NUI Galway
who provided research support and assistance: Laura Dempsey, Sinead Hahessy,
Bernard McCarthy, Bronagh Mooney, Claire O Tuathail and Claire Welford. Thanks to
Larri Walker and Natasha Rusfkikh who provided support with data input.
Finally, we would like to thank staff in acute hospitals and long-stay units who
facilitated access to residents and gave time for interviews, and to all the facilities
that returned questionnaires. We also wish to thank all the older people who
participated in this project.
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland

End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
Contents
Executive Summary
15
Chapter One: Introduction
23
1.1
Opening Remarks
24
1.2
Purpose of the Project
25
1.3
Defining End-of-Life Care
25
1.4
Older People and End-of-Life Care
27
1.5
Dying and Death in Ireland
29
1.6
Policy Developments
31
1.7
Structure of this Report
35
Chapter Two: Quality of Life and Quality of Care at the End-of-Life for Older People
37
2.1
Introduction
38
2.2
Quality of Life for Older People
38
2.3
Quality of Life of Older People at End-of-Life
40
2.4
Quality of Care for Older People at End-of-Life
42
2.5
What is a Good Death?
45
2.6
Barriers to End-of-Life Care
48
2.6.1 Continuity of Care
48
2.6.2 Organisation of Care
49
2.6.3 Education and Training
49
2.6.4 Cultural Awareness
50
2.6.5 Staffing
50
2.6.6 Physical Resources
51
2.6.7 Spiritual and Psychological Support
52
2.6.8 Communication
52
Initiatives to Improve End-of-Life Care in all Settings
53
2.7
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland

2.8

2.7.1 Liverpool Care Pathway
54
2.7.2 Gold Standards Framework
55
2.7.3 Preferred Place of Care
55
2.7.4 Respecting Patient Choices Program – Advance Care Planning
55
2.7.5 Hospice to Hospital Programme
56
2.7.6 Guidelines for a Palliative Approach in Residential Aged Care
56
2.7.7 My Home Life
56
Conclusion
57
Chapter Three: The Legal Framework
59
3.1
Introduction
60
3.2
Human Rights
61
3.3
Equality and Non-Discrimination
62
3.4
The Right to Decide and Consent to Treatment
63
3.4.1 Legal Capacity in Irish Law
64
3.4.2 Disclosure of Information and Consent to Treatment
70
3.4.3 Voluntary Consent
72
3.5
Confidentiality of Medical Information
73
3.6
Advance Healthcare Directives
73
3.7
Proxy Decision-Making in Irish Law
78
3.7.1 Ward of Court System
78
3.7.2 Enduring Power of Attorney
79
3.7.3 Individual Care Plan
80
3.7.4 Do Not Resuscitate Orders
81
3.8
Law Reform Commission Proposals
84
3.9
Conclusion
85
Chapter Four: Methodology
87
4.1
Introduction
88
4.2
Research Design
89
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
4.3
Ethical Approval
89
4.4
Survey of Acute and Long-Stay Facilities
89
4.4.1 Questionnaire Design
91
4.4.2 Pilot Survey
91
4.4.3 Main Survey
92
Resident, Patient and Staff Interviews
93
4.5.1 Selection of Study Sites
94
4.5.2 Gaining Access
94
4.5.3 Visits to the Study Sites
95
4.5.4 Sampling Strategy
96
4.5.5 Patient Interviews
96
4.5.6 Direct Care Staff Interviews
97
4.5.7 Interview Schedules
98
4.5.8 Qualitative Data Analysis
98
Conclusion
99
4.5
4.6
Chapter Five: Services and Facilities for End-of-Life Care for Older People in Ireland
101
5.1
Introduction
102
5.2
Care Settings
102
5.3
Long-Stay Patients/Residents
104
5.4
Deaths
106
5.5
Services and Facilities for End-of-Life Care
107
5.5.1 Palliative Care Beds
107
5.5.2 End-of-Life Equipment
108
5.6
Staffing Issues
109
5.7
Communication and Liaison with Other Services
111
5.8
Bereavement Support
115
5.9
Policies and Guidelines
118
5.10 Meaning and Understanding of End-of-Life Care
120
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland

5.11 Perceptions of Good End-of-Life Care
123
5.12 Barriers to Delivering Good Quality Care
127
5.13 Conclusion
130
Chapter Six: Living, Dying and Relationships within Acute and Long-Stay Settings
131
6.1
Introduction
132
6.2
The Experience of Increasing Frailty
132
6.3
Activity and Occupation
133
6.4
Personal and Professional Relationships
135
6.4.1 Knowing the Person
135
6.4.2 A Sense of Belonging
137
6.4.3 The Meaning of Loss
138
Conclusion
140
6.5
10
Chapter Seven: Transitions into Dying
141
7.1
Introduction
142
7.2
Older People’s Accounts of Death
142
7.3
Experiences of Symptom Management
144
7.4
Staff Perspectives on Recognising Dying in Older Adults
147
7.5
Sensitivity to the Rituals and Practices Surrounding Death
149
7.6
Conclusion
152
Chapter Eight: Organisation and Ethos of Care
153
8.1
Introduction
154
8.2
Defining End-of-Life Care
154
8.3
Care as a Philosophy and Practice
155
8.4
Physical Environment and Resources
159
8.5
A Learning Culture
161
8.6
Conclusion
163
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
Chapter Nine: Conceptualising New Frameworks for Understanding End-of-Life Care
165
9.1
Introduction
166
9.2
Conceptual Model for Understanding Older People’s Experiences
167
9.3
Framework for Good End-of-Life Care
169
9.4
Levels of Care and Service Provision
173
9.4.1 A Case Example
177
Conclusion
178
9.5
Chapter Ten: Conclusion and Recommendations
179
10.1 End-of-Life Care
180
10.2 Methodological Issues
181
10.3 Legal and Ethical Issues
182
10.4 Facilities, Services and Procedures
184
10.5 Living and Dying Experiences in Acute and Long-Stay Settings
186
10.6 Conceptualising New Models of Care
188
10.7 Recommendations
190
References
193
List of Figures
Figure 4.1: Explanatory Sequential Design (Creswell and Clark, 2007)
89
Figure 5.1: Percentages of Residents by Dependency Category by Facility
105
Figure 5.2: Type of Equipment Available by Long-Stay Facility Type
109
Figure 5.3: Visits by Consultant in Palliative Care
112
Figure 5.4: Visits by Clinical Nurse Specialist in Palliative Care
113
Figure 5.5: Facilities Available for Family/Friends/Carers in Long-Stay Facilities
117
Figure 5.6: After-Death Bereavement Support in Long-Stay Facilities
117
Figure 5.7: Topics Covered by Written Policies/Guidelines by Facility Type
119
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
11
Figure 9.1: An Individual’s Life-Death Trajectory
168
Figure 9.2: Living and Dying Trajectory
169
Figure 9.3: Levels of End-of-Life Care for Older People
173
List of Tables
Table 1.1:
Total Number of Deaths and Deaths in Acute Hospitals for People
Aged 65 Years and Over
29
Table 1.2:
Cause of Death by Age Group
31
Table 4.1:
Questionnaires Administered and Returned by Type of Facility
93
Table 4.2:
Study Sites
94
Table 4.3:
Staff Interviewed for the Study
98
Table 5.1:
Distribution of Respondents by Facility Type
103
Table 5.2:
Long-Stay Beds by Facility Type
103
Table 5.3:
Long-Stay Residents by Facility Type
104
Table 5.4:
Patients/Residents with Dementia by Facility Type
106
Table 5.5:
Number of Deaths by Facility Type
106
Table 5.6:
Location at Time of Death by Facility Type
107
Table 5.7:
Palliative Care Beds by Facility Type
108
Table 5.8:
Number of Full Time Equivalent (FTE) Nursing Staff by Facility Type
110
Table 5.9:
Education and Training in Palliative and End-of-Life Care by Facility Type
111
Table 5.10: Access to Palliative Care Support by Facility Type
112
Table 5.11: Visits by Health and Social Care Providers in Private Long-Stay Facilities
114
Table 5.12: Visits by Health and Social Care Providers in Public Long-Stay Facilities
114
Table 5.13: Visits by Health and Social Care Providers in Voluntary Long-Stay Facilities
115
Table 5.14: Bereavement Support Structures (Before and After Death) in Acute and
Psychiatric Hospitals
Table 5.15: Written Guidelines/Policies on End-of-Life Care by Facility Type
12
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
116
118
Table 5.16: Participation in Quality Initiatives by Facility Type
120
Table 5.17: Meaning and Understanding of End-of-Life Care for Older People
122
Table 5.18: Perceptions of Key Factors Contributing to Good End-of-Life Care
125
Table 5.19: Barriers to the Provision of Good End-of-Life Care
129
Table 9.1:
Framework Required to Ensure Good End-of-Life Care for Older People
170
Table 9.2:
Service and Workforce Requirements for Implementation of the Framework 176
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
13
14
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
Executive
Summary
Executive Summary
End-of-Life Care
This report is an exploration of end-of-life care for older people in acute and longstay settings in Ireland. The focus is on end-of-life care for all types of illnesses and
conditions in acute and residential care settings because this is where the majority
of older people die in Ireland. End-of-life care is broader in scope than palliative
care and allows a longer lead time to death. It takes into account the potential
uncertainty surrounding dying and death, including the possibility that some people
follow complex and non-linear pathways to death. End-of-life care is, therefore,
intimately bound-up with quality of life issues for older people living in acute and
long-stay care settings. Loss and decline are common and recurring features of
life in long-stay care settings, from admission, through on-going care, to death.
The challenge for the future will be to find an equilibrium between the care of the
living and dying in acute and long-stay care settings. This report provides a potential
framework for the development of an integrated care structure for end-of-life care
that embraces living and dying as part of the normal care structures and processes
in all care settings.
Methodology
The purpose of the study is to provide a contemporaneous account of service
provision and care for older people dying in acute hospitals and long-stay settings
in Ireland. The study aims are as follows:
n
To undertake a survey of Irish acute hospitals and long-stay institutions in
relation to contextual epidemiology of death and dying, facilities, staffing levels,
access and liaison with services, and training and education needs of staff
n
To explore key stakeholder and direct care managers’ perspectives on the
current provision of end-of-life care for older people
n
To explore the experience of the older person in receipt of end-of-life care.
A mixed methods approach was adopted for the study based on the application
of quantitative and qualitative methodologies. A total of 592 care facilities were
surveyed as part of the quantitative analysis. The overall response rate to the
survey was 55 per cent. Qualitative interviews were carried out in six randomly
selected sites, chosen to reflect the range of care facilities where older people
die. 35 interviews were conducted with direct care staff and 30 interviews were
16
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
conducted with patients identified by staff as being on a pathway to death, even
if death was not imminent. The mixed methods approach offers the potential of
collecting rich and deep contemporaneous data on older people currently in receipt
of end-of-life care in Ireland.
Legal and Ethical Issues
The key challenge in enhancing quality of life for older people at end-of-life is the
preservation of the person’s surviving autonomy and dignity balanced against
inevitable paternalism. Respect for the person’s dignity and autonomy are at the
core of their human rights and the law on consent upholds these rights. The
current law on decision-making at the end-of-life is based on the principles of
autonomy and self-determination. However, if these principles do not hold during
all of their time in care, beginning at admission, it is difficult to give them meaning
at the end stage of dying and death. The first challenge therefore is to involve older
people directly in all matters related to their care. This means more information and
enhanced communication between providers of care, families and patients.
In Ireland, there is also a need for legislative reform in relation to vulnerable older
people and the key issue of capacity. In the meantime, it should be possible to
have guidance in the form of codes of practice that would incorporate these issues
until legislation is enacted. Beginning with the transition from home, and having
regard to the least restrictive alternative, the person’s wishes should be considered
at all stages of the care process. There is a role for an independent advocate in
assisting the person to make a decision about their care and treatment, if and
when required. In this regard, knowledge of the patient’s wishes or any advance
directive made prior to the onset of incapacity should be central to decisionmaking. While there is no legislation at present to underpin advance directives,
either formal and informal, they are a means of ensuring wishes are respected
following the onset of incapacity and not just at the end-of-life.
Facilities, Services and Procedures
The majority of older people in Ireland die in acute and long-stay settings.
However, the number of designated palliative care beds in the system is extremely
low. While all settings provide end-of-life care, with some patients transferred
specifically for that purpose, there are very few designated palliative care beds
available for patients who need such care. The availability of single rooms at time
of death is highest, as one might expect, in private nursing homes and lowest in
acute and psychiatric hospitals. The majority of care staff across all facilities have
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
17
not received any formal qualifications in palliative care, with less than one third of
all facilities reporting that their qualified nurses hold a post-registration qualification
in palliative care. In relation to other staff, only one third of all facilities responded
that their care/support staff had attended short courses in end-of-life care and
only 12 per cent replied that doctors/consultants in their facility had received any
form of specialised training in palliative care/medicine. These figures suggest a
significant education and training gap in relation to palliative care provision.
There are generally low levels of access to consultant-led palliative care teams,
especially within long-stay facilities, where only two fifths of respondents indicated
that they are connected to the service. Access to 24-hour advice on resident/
patient care from specialist palliative care services is higher, as might be expected.
Routine visiting/service provision within long-stay settings from geriatricians, public
health nurses (PHNs), social workers, psycho-geriatricians, phlebotomists and
counselor/psychologist/CPNs is very low. These providers are likely to visit only
when asked or not at all. Such low levels of provision reflect existing resource
constraints, but may also reflect the sequestration of dying people from living
people by healthcare professionals. Older dependent people receiving end-of-life
care may not only be physically separated from the rest of society through their
admission to long-stay care facilities, but they may be further isolated through the
work practices and work patterns of healthcare providers.
Overall, there is a low provision of formal bereavement support structures available
before and after death within acute and long-stay settings in Ireland. Similarly, the
availability of private space for engaging in confidential consultations with relatives
and friends is scarce in all settings. There is very little internal accommodation
available for family and friends wishing to stay overnight with their loved-ones
when death is imminent.
Written guidelines for end-of-life care are generally more available in the private
long-stay sector than in the public or voluntary long-stay sector. Care in the last
hours of life, last offices and contacting a patient’s priest/minister/spiritual advisor
are well covered in written guidelines, achieving 80 per cent coverage or above
in public, private and voluntary facilities. Symptom control and informing other
patients of the deaths of relatives are less well covered. The existence of written
policies on advance directives is low overall, particularly in public long-stay facilities.
Similarly, coverage in relation to written policies/guidelines on the needs of
residents from ethnic minority groups is low across all sectors.
18
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
Living and Dying Experiences
The qualitative interviews showed that older people were capable of
conceptualising dying and death, but were less willing to talk about their own
position on the end-of-life continuum. There was recognition of loss and transition
upon admission to long-stay care, but no overt willingness to engage in discussion
about dying and death. Some participants appeared unaware that they were close
to death. It is impossible to know if this kind of response was self-deception or
self-protection, or some combination, on the part of patients, or whether they were
genuinely unaware of their own impending death.
Information and openness around dying and death were contentious issues in
all of the sites visited. Only a small number of staff regarded it as part of the
patient’s rights to be informed of their prognosis, in keeping with the general
belief that discussion of death was unsettling for residents and therefore not to be
encouraged. The majority of staff only discussed death and dying if the resident
brought up the topic first and acknowledged that they were dying. Inhibitory factors
against open communication included a perceived lack of knowledge and skills
among staff and finding the right time to raise the subject with them. Strategies
such as keeping cheerful, reassuring the resident that they would be fine and
distraction were used to steer staff-patient discussions away from death.
When death was explicitly acknowledged by patients, being able to achieve a
sense of closure over their life was important. Patients often rationalised their
deaths either through a belief in God as an external influence on the time and
manner of death or as a normal and inevitable pattern of the life-cycle. Some
patients reported that they not only accepted but actually looked forward to death
as a way of meeting again with family members who had pre-deceased them. A
‘good’ death, when articulated, was described generally as one which was neither
protracted nor painful, but allowed for reconciliation with family and friends. Most
participants were aware of the need to balance physical care with the spiritual
dimension of life closure.
The vast majority of staff described care within their facility as person-centred,
individualised and based on resident choice. However, staffing shortages
sometimes prevented the realisation of this model of care. Staff simply did not
always have the time to give dedicated personal care to patients who were dying.
Staff in all sites referred to low staffing levels as a barrier to spending time with
patients, though there were significant differences in staffing ratios across the
sites. There was some recognition of the emotional labour involved in caring for
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
19
those at end-of-life, making it difficult for staff to move seamlessly between care
of the dying and care of the living. The value of education and training in end-oflife care was a constant refrain in discussions with staff during the site visits as a
counterbalance to the physical and emotional needs of the job.
The physical environment was highlighted by staff participants as a real issue in
end-of-life care. Sometimes the lack of physical space meant that patients and their
families could not always have privacy at the time of death. Few of the facilities
that we visited had a single room that could be used when a resident was at the
final stage of their life. Where single rooms were available, they were prioritised in
relation to clinical need (e.g. MRSA infection). Most staff valued the single room as
a resource that created privacy for the patient and enabled relatives and friends to
stay with the person in their final days and hours.
Conceptualising New Approaches to Care
The data identified many barriers to the development of new conceptual
approaches that seek holistic, person-centred solutions over a longer time
horizon than the ad hoc approach allows. There are resource constraints, capacity
problems, infrastructural weaknesses, education deficiencies, and poor attitudes
and expectations in relation to quality of life for older people at end-of-life. Ageism
within society generally and within the health and social care system in particular
makes it difficult to sanction investment in end-of-life care for older people.
Moreover, until recently, there has been little engagement with quality of life issues
for older people in long-stay settings.
The frameworks outlined in this report are based on the view that while older
people should be at the heart of decision-making with respect to end-of-life care,
institutional structures and processes, and social relationships also matter. Thus,
while autonomy and independence for older people are important, so too are issues
of understanding, empathy, information and communication. An understanding of
the human condition is central to good quality care for older people at end-of-life.
Four key dimensions are identified as critical for good end-of-life care: knowing and
revealing needs; expressing values and preferences; interacting with others; and
developing knowledge. These dimensions are important whether the care provided
is fundamental, enhanced, advanced or complex.
End-of-life care must be flexible, contemplative and responsive to need in order to
capture the uncertainty associated with dying and death. Trajectories of dying are
not always linear, as older people move in and out of the zone of ‘living and dying’.
20
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
Neither are losses within long-stay facilities confined to individual dying and death;
older people have to come to terms with many ‘absences’ within long-stay care
and bereavement is a constant feature of life in such settings. Therefore, the neat
separation of end-of-life into a defined period when palliative care services can be
mobilised and administered is not possible. The need for end-of-life care can arise
far away from actual death, depending on the physical, mental and emotional state
of patients and their families.
Recommendations
Six key recommendations arise from this report. The first is for greater consultation
with older people in order to establish needs and preferences with respect to endof-life care. The second argues for an improvement in the physical environment
where people die, particularly with respect to the availability of single rooms
and facilities for families and friends. The third seeks greater cultural awareness
and understanding of dying and death, including consideration of the current
disparity of esteem between younger and older deaths within the health and
social care system. The fourth calls for policy reform to ensure that end-of-life care
is recognised as an important public health issue, separate to palliative care but
inclusive of many of its key elements. The fifth is concerned with measures to
develop practice to ensure that end-of-life care for older people is integrated into
the everyday life and work of acute hospitals and long-stay facilities. The sixth and
final recommendation argues for the testing of new models and approaches that
bring about a greater fusion between end-of-life care and gerontological care within
all long-stay settings in Ireland.
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
21
22
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
Chapter One
Introduction
Chapter One
Introduction
1.1 Opening Remarks
This research project focuses on the quality of life and the provision of care at the
end-of-life for older Irish people in various care settings. These settings include
acute hospitals, public extended care units, private nursing homes, voluntary
nursing homes and welfare homes. ‘Quality of life’ is a complex issue which
includes, but is not reducible, to ‘quality of care’, and needs to be assessed
through person-centred subjective and objective methods. In compiling this
report, quantitative information on the physical environment, facilities, services,
staffing and support mechanisms of acute hospitals and long-stay settings was
gathered. In addition, qualitative investigations were conducted to elicit the views
and experiences of people receiving end-of-life care, as well as exploring the
perspectives of management and staff within care settings to end-of-life care.
Defining the term ‘end-of-life’ care for people in acute hospitals and long-stay
settings is problematic. When does care become end-of-life care? Who decides
this? Does the person who is in the terminal stage of an illness realise or accept
that this is the case? The answers to these questions can vary depending on the
type of illness trajectory the person has, where they are being cared for and who
is providing the care. For many people in late old age, dying may be a protracted
process with a slow decline, making it difficult to delineate patterns or degrees
of care. For example, when does end-of-life care begin for people with dementia
who may survive up to ten years following diagnosis or first signs of symptoms?
And even when agreement is reached on the definition of end-of-life care, patients,
families and care staff may all have different perspectives on what constitutes
quality of care and quality of life in later life.
In this report, the term end-of-life care is used in relation to death and dying, since
the focus of the research is on all conditions leading to death in a wide variety
of care settings, as distinct from palliative care which has come to be associated
with care for people with the particular diseases of cancer and AIDS, and with the
provision of care in a particular setting. The main policy developments regarding
care of people who are dying in Ireland in recent years have, however, been closely
associated with the concept of palliative care rather than end-of-life care. The
challenge for the future is to transfer best practice from hospice settings to longstay care settings and to older non-cancer patients.
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End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland
1.2 Purpose of the Project
The aim of the research report is to map the current status of end-of-life care
for older people in acute hospitals and long-stay care settings in Ireland. Specific
objectives are as follows:
n
To identify levels of palliative care provision in different care settings
n
To map different physical, environmental and social contexts
n
To describe patient experiences of end-of-life care
n
To describe typical ‘patient journeys’
n
To outline legal and ethical frameworks
n
To make best practice and policy recommendations.
1.3 Defining End-of-Life Care
Terminology in respect of the care of p