FINITE LIVES DYING DEATH AND BEREAVEMENT AN EXAMINATION OF STATE SERVICES IN IRELAND SENATOR MARIE LOUISE O’DonneLL 2017 FINITE LIVES DYING DEATH AND BEREAVEMENT AN EXAMINATION OF STATE SERVICES IN IRELAND SENATOR MARIE LOUISE O’Donnell 2017 Design: Maeve Kelly Design Cover: Wicker Weave by Barry Noyce, Birr, Co Offaly Photographs: All photographs by Donal Moloney except: Tribute to Anthony Foley, page 177 - courtesy of Billy Stickland Funeral of John Clarke, Co Longford, page 59 – by James Flynn Defence Forces at Garden of Remembrance page 68 – by Cpl Neville Coughlan, Irish Defence Forces Press Office Wicker Weave, cover - by Brian Redmond Defence Forces assisting during flooding page 69 – by Irish Defence Forces Special thanks to: Pupils of St Mary’s NS, Donnybrook, pages 74 & 75 Robert O’Sullivan, page 48 Report Printed by: Doggett Group Exhibition Photographs Printed by: Print Depot This report can be accessed on www.marielouiseodonnell.ie PAGE 2 | FINITE LIVES CONTENTS Acknowledgements 4 Introduction 6 Methodology 8 A Vision 10 Recommendations 16 Chapter 1 25 Government Departments Quantitative Research Findings and Recommendations: Department of Agriculture, Food and the Marine 28 Department of Arts, Heritage, Regional, Rural and Gaeltacht Affairs 36 Department of Children and Youth Affairs 48 Department of Communications, Climate Action and Environment 58 Department of Defence 68 Department of Education and Skills 74 Department of Finance 88 Department of Foreign Affairs and Trade 98 Department of Housing, Planning, Community and Local Government 106 Department of Jobs, Enterprise and Innovation 118 Department of Justice and Equality 126 Department of Public Expenditure and Reform 144 Department of the Taoiseach 152 Department of Social Protection 160 Department of Transport, Tourism and Sport 176 Office of Public Works 186 OfficeChapter of the Revenue2 Commissioners 199192 A Survey of TDs and Senators Experiences 2016 Chapter 3 211 Qualitative Interviews 211 Interviewee’s Suggestions 233 Bibliography 238 FINITE LIVES | PAGE 3 ACKNOWLEDGEMENTS This report is the result of a process of discussion, research, collaboration and concentrated work. I have been ably supported in researching and writing the report by a number of individuals and organisations. Caroline Lynch, the lead researcher, who with impeccable attention to detail, guided, steered, and held me within the realm of politics and of possibility.My first thanks She focussed are due tome constantly and consistently on the remit and the brief. Her commitment, professionalism, interest in and passion for the subject is unparalleled. She is gracious and patient and carries her brilliance very lightly on her shoulders. She has reinforced my belief that things can be better – and that being the case –we must make them so. She was an outstanding skilled colleague throughout this whole process. It would not have been possible without her. I wish to acknowledge the contribution of my Parliamentary Assistant, Jane Lehane. Her professionalism is boundaryless and her dedication unparalleled. Her talent has been central to the success of this venture. Without her calm, patient, intelligent and artistic work with her on a daily basis and even more privileged to count her among my friends. influence, much of the richness of the report would have been lost. I am privileged to Dr. John Weafer provided invaluable assistance in devising the questionnaire to the Government Departments and members of the Oireachtas. My thanks are also due to him for assessing the responses from the Deputies and Senators. I wish to acknowledge Angela Edghill, Advocacy and Public Engagement Manager of the fact that dying is everyone’s business. She brought that belief, persuasion and momentumthe Irish Hospice through Foundation, the corridors who ofwith politics, passion culminating and belief in first it being planted heard a seed and aboutacted upon, and is one of the true forces behind the publication of this report. I wish to thank the 33 interviewees from diverse disciplines: the arts, law, psychology, advocacy, ethics, philosophy, specialist palliative care, sociology, social work, the funeral services industry, criminology, the coronial service and architecture. They understood the value of the study and engaged with me readily, giving generously of their time and their expertise. Their voices were passionate, acute, practical, and humane. They are reflectedThanks are here. due to the Secretaries General and staff of the Government Departments and Agencies who engaged with the study and returned the questionnaires. I also wish to thank my colleagues in the Dáil and the Seanad who completed the questionnaire and shared their experiences of working with their constituents on issues relating to dying, death and bereavement. They also contributed some interesting and imaginative ideas on how we could improve our services and responses on end of life issues. PAGE 4 | FINITE LIVES My gratitude is due to the remarkably talented photographer Donal Moloney. Thirty of the photographs in this report are his originals and he has captured the departments of State in a way that is above and beyond words. Finally, I reserve very special thanks for An Taoiseach, Enda Kenny TD. He recognised and understood that issues around dying, death and bereavement challenge us all and possibly need a comprehensive whole-government response. I thank him for seeing the value in investigating that possibility and entrusting me with the conversations, research and production of this report. It is a vital first step in a process which can only have Senator benefit Marie for Louiseus all. O’Donnell FINITE LIVES | PAGE 5 INTRODUCTION This report is the second in a programme of my research into end-of-life care in Ireland and how the State supports people who are facing dying, death and bereavement. Commissioners were involved in this study. The Department of Health was not included. Government Departments, the Office of Public Works and the Office of the Revenue This study found its beginning and origins in the series of public hearings on end-of-life care before the Oireachtas Joint Committee on Health and Children, chaired by then Deputy Jerry Buttimer. From 24th October to 14th November 2013, experts informed the Committee of the current arrangements around end-of-life care in Ireland and importantly how it could be improved. Following those hearings, I tabled a motion on End-of-Life Care and Bereavement in Seanad Éireann on 16th April 2014. The motion was carried and called on the Government to explore the components of an overarching strategy on end of life and bereavement, which would look at the wider societal issues including legal issues, finance,Following economics, that motion, education An Taoiseach and culture. invited me, in a letter on 26th March 2015, to review the end-of-life services provided by Government Departments to the public. A report on how the Departments support their own staff was completed in 2015 and following the 2016 general election, work commenced on reviewing the Departments’ support to the public. The research was primarily conducted from September 2016 to May 2017. From An Taoiseach’s initial invitation on 26th March 2015 until the launch of this report on 17th May 2017, an estimated 63,440 individuals, of all ages, have died in Ireland and 634, 400 people have been bereaved1. These deaths have ranged from being expected following a long life, or anticipated after illness, to deaths which were accidental and violent. This report has attempted to look at how the State cares for people in these circumstances before and upon their death. It has also looked at what supports the loves ones of the deceased need from the State and what they receive. A series of recommendations are made in an effort to close the gap between expectations (if any) and reality. The report looked at issues around dying, death and bereavement in Ireland today but it did not consider any demands to introduce euthanasia or assisted suicide in this country. When exploring issues affecting people who are dying, the study considered what (non- health) supports a person might need in the weeks, months or indeed years they live there were 793 days between 26th March 2015 when An Taoiseach 1. wroteThese figuresto Senator are basedO’Donnell on an inviting average her of 80 to people conduct dying the eachstudy day to andthe launch of the final report on 17th May 2017. PAGE 6 | FINITE LIVES with declining health, following a prognosis of a life-limiting condition. The needs of an actively dying person are obviously beyond the scope of this study or indeed the expertise of this author. The report is divided into a number of chapters: the study and my perspective of the issues to be addressed. The vision also includes • overallThe vision recommendations provides an overview that need of theto be key considered themes that in orderemerged to secure over the comfort course and of dignity for individuals and their bereaved loves ones at end of life. methods approach was adopted with departments completing questionnaires, a • surveyThe methodology of TDs and Senators,chapter qualitativeexplains how interviews the report and awas desk approached. analysis of work A mixedof the Departments and relevant issues. • structureThe research of this chapter section captures involves the responsea brief outline of each of Department, the work of the each Office Department of Public includingWorks and its the mission Office statement. of the Revenue An outline Commissioners of the Department’s to the questionnaire. response is thenThe provided. Following this outline some end-of-life issues relevant to the Department and recommendations are proposed. The Department questionnaires are followed third section outlines the key issues raised during qualitative interviews with 34 interviewees.by a section presenting the findings of a survey of 112 TDs and Senators. The Finally, this study was an examination of end-of-life issues outside the health arena.