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Individuals must have a say in own death

Paul Murray discusses the Forum on End of Life in Ireland, part of the Irish Hospice Foundation

We will soon know what people in Ireland believe about death, dying and end-of-life care. A year-long listening process is nearly complete, and the work of writing up what has been heard and written will then move to draft report stage, then to national consultation.

This project of the Forum on End of Life in Ireland, which is under the Irish Hospice Foundation umbrella, was launched officially by President Mary McAleese on March 11 last in the Royal Hospital Kilmainham.

It has brought light to bear on all aspects of dying and death, and not merely medical ones. This has been done through written submissions, workshops and public meetings.

We have been told about issues surrounding advanced care planning and ‘Do Not Resuscitate’ orders, the settings in which people have had to die, often overcrowded, noisy and lacking privacy. A consistent thread has been the often poor level of communications surrounding death and dying. Who tells who that a person has a terminal illness, how do they tell it, and are they trained to do so? Do we sometimes continue futile treatments, delay palliative care, or fail to respond to the express wishes of the patient? Why are we tolerating unevenness palliative care provision throughout the country?

Most importantly, and this has been borne out by previous research, we know that, if at all possible, people should be facilitated to die in their own homes with their families. Only 20 per cent now do so.

Many issues
It is clear, however, that we have to move beyond thinking purely in terms of the actual end period of life. Before any of us reach that stage there are many issues that should be settled. Have we made a will? Have we indicated preferences on care and medical issues even though they may not be legally enforceable? How have Irish services facilitated non-indigenous people, or met the cultural and religious needs of those outside the Christian majority? For Humanists?

Death, in other words, is not just about how we deal with what might be termed the ‘end game’. It concerns how we prepare for that. One thing we have learned is that every aspect of Irish life has a link in some way with death and dying issues. At workshops we have heard from architects on the importance of good environment for all patients, not just those who are dying. Interpreters and translators have fed into the process with a written submission on the issues they face. One of the most riveting workshops outlined issues surrounding the emergency services and the ‘first responders’ response time to incidents.

Another workshop highlighted the issues facing Travellers: including the disquieting matter of the cost of funerals and the hospitality sometimes expected. It is clear we have to pinpoint death issues for the marginalised, and not just those culturally or financially straitened. Among the disablement and critical illness groups (often the lesser known ones) there can be difficulties in getting official and public recognition.
Most of us will die in old age. However, the Forum has been hearing also about the deaths of children, sudden deaths of the young, and suicide (a higher death rate than from road accidents and high internationally for young males). Gays and lesbians, too, have their particular issues, a major one being the non-recognition of same-sex partners at the consultation stage of a critical illness. The partner whose bereavement is not recognised by the family has a particular burden.

Bereavement generally is a major issue. How do we deal with it? Are there policies and procedures? Who does it?

Ethics, and the need for protocols and procedures were familiar themes. To mention a few: pain control, sedation, hydration, nutrition and PEG feeding. There was also stress that proper palliative care for all would lessen the fear of a painful, undignified death.

And there were many harrowing personal stories involving insensitivity and lack of consultation by professionals, some of which emerged at the nine public meetings held throughout the country in submissions and workshops. These will be reflected in the report being prepared by Bob Carroll, the former director of the National Council on Ageing and Older People. This report will include a proposed action plan for the future.

Listening process
The listening process — involving 23 workshops with presentations from about 90 groups, 142 written submissions and the nine workshops — teaches one vital thing.

We have to regularise the sometimes haphazard way in which we deal with dying and death. We have to ask people what they think about death, one of the most profound aspects of life, along with birth. What treatment do you not want? Where do you want to die? Doctors have an obligation to communicate with families and patients.

It is perhaps ironical that while the cult of the individual is in the ascendant we often fail to consult individuals on issues concerning their own deaths. We duck when faced with the need to tackle the numerous matters around death and dying. We hope that the Forum and its outcome will go some way toward helping Ireland face up to this subject.

Paul Murray is co-ordinator of the Forum on End of Life in Ireland.

Posted in Guests on 11 November 2009
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