The report Finite Lives Dying, Death and Bereavement. An Examination of State Services in Ireland by Senator Marie Louise O’Donnell was launched by Taoiseach Enda Kenny on the day he stepped down from his role.
A call for Think Ahead to be adopted by the State and made available free of charge to every citizen is one of the 16 key recommendations made in Senator O’Donnell’s study.
As Mr Kenny launched the Finite Lives reports he said: “I want to wholeheartedly support the proposal to extend awareness of Think Ahead so that people can plan for their futures and that of their families and know where to turn to for advice and support.
“Because when illness and death and grief strike, people want to know and feel they are part of a kind and compassionate nation where the services they need are not just available but are accessible in a way that recognises their humanity and above all their fragility at a very particular time for them.”
The Think Ahead form which was developed by the Irish Hospice Foundation urges people of all ages and at all stages in life to think, talk and tell about their wishes for end of life in the event that they cannot speak for themselves.
Angela Edghill, Irish Hospice Foundation, Advocacy and Public Engagement Manager welcomed the new report and the endorsement for Think Ahead.
Ms Edghill added: “Finite Lives proves dying is everyone’s business. It provides great evidence for a more coordinated and strategic approach to dying, death and bereavement by all of the agencies and Departments of State. Only good can come of this report since the issues it examines affect us all, without exception – but only if the State acts on Senator O’Donnell’s sensible, practical and reasonable recommendations.”
She said the Think Ahead form encourages people of all ages and at all stages in life to think about, talk about, tell, record and review their wishes for future medical and personal care, financial and legal arrangements.
The form includes an area for advance healthcare directives – legally binding documents – through which a patient can record the medical treatments they would not like to receive in the event they are unable to communicate that wish in the future. She said Think Ahead enjoys considerable support from GPs and research on introducing Think Ahead in general practice shows it to be an acceptable and effective tool.
Finite Lives is the first comprehensive analysis of end-of-life issues across all government departments outside health.
Senator O’Donnell said that death affects nearly 1,000 people every day between the estimated 80 people who die every 24 hours and the 800 people directly affected by these deaths.
Amongst the recommendations in the report are:
- The need for a whole-of-government strategy on end-of-life
- A national public consultation process.
- A socio-economic review of the costs of death and bereavement
- An analysis of fuel and funeral poverty
- Regulation of the Funeral Services Industry
Further recommendations include:
- Reinstatement of the Bereavement Grant
- Audit to combat financial abuse of pensions of the elderly
- The Department of Education and Skills to develop guidelines on supporting grieving children within teacher training.
- Fully commence the Assisted Decision Making (Capacity) Act 2015
- Update the Coroners Bill 2007 and enact as a priority
- Increase the Living Alone Allowance
- Promote the Think Ahead planning tool
- Recognise and promote the role of the arts particularly at end of life
Senator O’Donnell has recommended that the State develops a dedicated website outlining all State services that are available to support people at end of life.
Services in the UK such as the “Tell Us Once” service and the Bereavement Service Helpline should be explored and adapted for Ireland in an effort to reduce the administrative burden facing individuals and their families.
Senator O’Donnell has also recommended that the income supports and allowances for people who are bereaved should be reviewed with particular attention paid to the needs of young widows with children.
Anomalies should also be addressed such as the situation facing those who are unmarried with children who lose a partner.
Senator O’Donnell said “The State has a responsibility to secure comfort and dignity for individuals who die each year. This involves:
- developing appropriate income supports,
- planning an accessible public transport system to allow people to go to appointments,
- designing our homes and public buildings with an end-of-life perspective,
- relieving the financial burden on families when the remains of their loved ones are being repatriated by providing funding to the Kevin Bell Repatriation Trust
Senator O’Donnell said: “Much valuable work is being done by the State. The point of the research was to determine what is being done and how supports and services could be improved. This is the beginning of a national conversation with the Government on issues which affect 100 per cent of the population.”
She added: “One of the report’s recommendations is that each Department should now develop its own end-of-life plan while the State starts the process of developing an overarching national strategy. This is an area that is too important to leave to chance. “
“The State is present at our deaths. It counts us in and counts us out. It issues our death certificates – the ultimate bureaucratic full stop. It must be able to create a culture or support a culture, where the issues of dying in all its myriad forms, and the issues of bereavement are dealt with in a more realistic, empathetic and humane way.”
“When people are vulnerable, when they are facing life-limiting illness, death and bereavement, it is then that we as citizens should see the State operating at its very best.
How does the State respond when our citizens are faced with their most challenging times? How and where does the State measure up at the most testing times in all of our lives? And if it does not measure up, is it because of lack of money, staff or services? Or is it because of the absence of policy, foresight, planning or the energy that is necessary for the creativity of vision?”
“This report seeks to answer those questions. It is not accusative. But it does challenge. It challenges the Government to do better, to be better, and to respond better to its citizens facing dying, death and loss at whatever age that occurs. Above all, it challenges the Government to build our dying, our death and our bereavement into policy and practice across all its Departments and Agencies.”
“What it asks is that where State services are required, they will be put in place. And where State services are not required, they will help and support communities to put that appropriate response in place. The State must encourage the brilliant, creative projects that are happening around the country, and use the best of them as templates, for how other towns and villages might operate or imitate, in the best sense of that
“The State cannot take away death. But what we as citizens can legitimately expect, is that the State supports people to cope better with the myriad of practical, social and emotional issues that present before, during and after a death.”
Finite Lives involved a review of questionnaires completed by 15 Government Departments as well as the Office of Public Works and the Office of the Revenue Commissioners. The Department of Health was not included in the study as it was conducting its own review. The research also involved 34 interviews and a survey of 112 TDs and Senators. The report contains an outline of the relevant work conducted by each department and makes recommendations for possible improvements.
This report completes Senator O’Donnell’s programme of research on the State’s end-of-life services. Her 2015 Finite Lives: Part 1- A Report on how the Civil Service deals with dying, death and bereavement among its own members” explored how government departments support their staff who are dying or have experienced a bereavement.
Copies of the Think Ahead form are available here.
The Finite Lives report is available to download here.