Title End-of-life care for older people in acute and long-stay care settings in Ireland Author(s)

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End-of-life care for older people in acute and long-stay care
Title
settings in Ireland
O'Shea, Eamon; Murphy, Kathy; Larkin, Philip; Payne, Sheila;
Author(s) Froggatt, Katherine; Casey, Dympna; Ní Léime, Áine; Keys,
Mary
Publication
2008
Date
End-of-life care for older people in acute and long-stay care
Publication
settings in Ireland, Dublin, National Council for Ageing and
Information
Older People
Publisher National Council for Ageing and Older peeople
Link to
http://www.icsg.ie/sites/www.icsg.ie/files/personfiles/103_end
publisher's
_of_life_care_report.pdf
version
Item record http://hdl.handle.net/10379/3204
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Some rights reserved. For more information, please see the item record link above.
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Hospice Friendly Hospitals National Council on
Programme Ageing and Older People
Irish Hospice Foundation 11th Floor
32 Nassau Street Hawkins House
Dublin 2 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
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-of-
life, 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
2.7 Initiatives to Improve End-of-Life Care in all Settings 53
End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland 
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
2.8 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