Dying in Ireland has been the subject of sustained interest during the last 2-4 months. This is a good thing. In the order of 30,000 of us will die over the next 12 months, and the evidence would suggest that though dying in Ireland has improved during recent years, there is still much we can do to make it a better and easier experience for ourselves and those we care about.
The Ombudsman (Peter Tyndall) launched his own report into the experience faced by Irish citizens’ as they shuffle off their mortal coil in the post Celtic Ireland state. His report was focused on complaints by patients and family members on their experiences with the health care service arising during end of life care.
Separately, The Irish Hospice Foundation funded a documentary entitled ‘Way to go – Death and the Irish,’ which provided a different perspective. The Oireachtas Committee on Health and Children reported on its own hearings on End of Life Planning and Palliative Care – highlighting regional disparites, and a need for co ordinated thinking and strategy in the areas of Palliative Care, End of Life Planning and Bereavement. In this, it was noted that the estimated cost of caring for Irish citizens who were dying was 1.3 billion euros per annum. It was observed that this spend was largely un-co ordinated and unplanned. This is in marked distinction to other countries, particularly Scotland, for example, where GPs and community services report individual cases into a central register of patients who are likely to die within 12 months, which in turn serves well for planning services, and researching the care provided.
Last week, An Taoiseach Enda Kenny launched Think Ahead II. This is a personal end of life planning tool, initially devised by The Forum on The End of Life and The Irish Hospice Foundation in 2011, and now increasingly used by citizens as an aid to reflecting and planning their own end of life care. Since 2011, over 17,000 copies of Think Ahead have been supplied. Its use has been researched, users have been surveyed for their experience, and this is now incorporated into Think Ahead II. Much international evidence would suggest that if you spend some time on reflecting and writing down your preferences regarding the key end of life decisions, it is likely that your passing will have less uncertainty and confusion about it. The best time to do this is now, using a good roadmap or planning tool such as Think Ahead, and when you are well. It becomes far more difficult when you are in the grips of uncertainty, and perhaps bothered by symptoms, as your time draws closer.
In launching ‘Think Ahead II,’ An Taoiseach reflected on his own personal and professional experiences with individuals as they counted down their remaining time. Like most political representatives, he is evidently no stranger to the life changing impact a serious diagnosis or an unplanned death can have on the lives of family and friends left behind. He says: “You know for sure that in the very moment the diagnosis is made, their whole universe, right down to the very vocabulary they use, is changed forever for that family.”
Like many GPs and Public Health Nurses working in communities, he observed a large difference between individuals who were well prepared and the many who still are not. He committed his support for Think Ahead, thanking The Irish Hospice Foundation and The Forum on the End of Life for making available a very useful and practical tool.
The use of Think Ahead by stable patients attending GPs, and its use in the Nursing Home environment have both been explored as part of a programme of research conducted through The Department of Public Health and Primary Care at Trinity College Dublin, and by GP Registrars on The TCD HSE GP Training Scheme, working with K Doc, a Kildare based GP co-operative. An electronic cloud based version of Think Ahead is now under development, and future research planned includes its integration as a module as part of a complete patient held electronic medical record system (Patients Know Best). Its use will also be studied among frailer, more complex patient groups in the Acute Hospital Setting, and in patients who are judged by their GP to be at high risk of dying within 12 months. A simpler version of Think Ahead (Think Ahead Essentials) is also planned for individuals with learning disabilities. Feedback from all of these studies will continue to inform the ongoing development of Think Ahead.
So, your time will inevitably come. It is desirable that you give it some thought, and reflect on your questions and wishes with those people who care about you, and possibly your own medical advisors if your life is already complicated by illnesses such as diabetes, heart disease or malignancy. If you do this when you are well, it is likely to be useful, easier and effective. It may also be curiously reassuring and pleasing. It might cause you to take a keener interest and enjoyment in what you can do tomorrow. If you delay, and become fatigued, troubled and distressed through illness, and your family and friends become fraught with concern for you, the task becomes rapidly more difficult, indeed impossible.
The negative medical default in these circumstances is to sometimes treat aggressively in the absence of clear direction from you. So, the advice is to Think Ahead (www.thinkahead.ie); think, then talk and tell your nearest and dearest about what you would like for yourself when your own time is at hand.
Dr Brendan O’ Shea is a General Practitioner in County Kildare, Ireland. He is Lecturer in General Practice at Trinity College, has a research interest in end of life planning, and has conducted research on the acceptability of the ‘Think Ahead’ planning tool with patients in the community and Nursing Home settings.