What is it like to die in Ireland in 2014? Is it getting better or worse? Have you thought about your death? Have you a friend or family member at risk of dying during the next year? How will it be for them? How will it be for you when your time comes?
These are important and difficult questions, ones many of us don’t want to face. It is often easier for us to park them. Yet one sure certainty in life is that we will die. Each year roughly 30,000 of us pass away in Ireland. GPs see several patients die annually, and we accompany them on this last part of their lives. We are with their families in the months and years afterwards.
Dying in Ireland has improved, but it needs to improve further, and we all have a role to play.
Some people do have a good experience. They have an understanding of what is happening and have reflected practically and emotionally with their important loved ones. They have clear ideas about their medical care, and have their preferences respected and acted upon.
Their dying is often a source of inspiration to those they leave behind, demonstrating courage and a sense of dignity and completeness, particularly to their younger friends and family. They leave a powerful and lasting impression of serenity. Their “affairs are in order”.
But it’s not always like this. A small minority of us will experience sudden unexpected events, leaving no time to prepare. We delay reflecting about our end of life until we become too sick to effectively do so, unable to communicate on this complex subject with our nearest and dearest. Our medical system has a default setting and, in my experience, where the patient has not explicitly stated their intentions, that default is set at treating aggressively in the absence of clear instruction.
One group for whom this area has been particularly challenging is those who have been diagnosed with dementia. When dementia is one of their diagnoses, planning for the future may well seem particularly challenging. But it is important. Best practice challenges both professional and social carers to make an effort to establish if the individual has a point of view, and to ascertain what this might be. An attempt at having the conversation respects the right of the individual to be heard, and maintain some of the control that is otherwise taken from them if no effort is made to reflect and explore. It is their opportunity to express their wishes and preferences about their future, and it is arguable that this opportunity is their entitlement, whether or not they and their carers can have a high level of certainty or clarity in all instances.
The Forum on End of Life in Ireland, a project of the Irish Hospice Foundation, took an important step towards encouraging us to plan for death and dying with the launch by the Taoiseach, Enda Kenny, of phase two of Think Ahead. This is a simple, citizen-led initiative aimed at guiding people on planning for end of life. Using a simple form Think Ahead urges people to think, talk, tell and write down their personal preferences for future medical, financial and personal care.This can then be left in a safe and secure place where it can be easily accessed in an emergency. Even if not fully completed, the form can simply be used as a guide to those things you might want to think about when considering the end of your life, and could help initiate and structure the discussion with loved ones.
Think Ahead was launched in 2011 after consultation and research. It is being re-launched after three years of experience and further research. The form has been slimmed down and made more accessible than the original. The biggest change is a section allowing users create an Advance Healthcare Directive, reflecting changes currently proposed in draft legislation. It was revised after consultation with a wide variety of groups and individuals including legal and healthcare professionals.
It is also exciting that Think Ahead is to be piloted online through Patients Know Best, the world's first patient-controlled digital tool. This will allow people record, store and retrieve their end-of-life wishes and care preferences, including their medical records, online behind a secure server.
So when is the right time to Think Ahead? Well, ideally now. You could do it on your 50th birthday, on receiving an important diagnosis, eg a malignancy, diabetes or heart disease, on your 60th birthday for sure, or on admission to residential care.
Dying in Ireland is improving. Despite incessant negative spinning about healthcare services, we live longer than ever before. There has been a sustained debate on this issue. Present legislation, which serves neither patient nor doctor well, dating from the 1870s, is about to be replaced. This will mean doctors caring for patients will be obliged to make a timely effort to ascertain the wishes of the patient, recording these appropriately. This will apply to all patients, irrespective of any intellectual deficit they may have, an effort to understand what patients would like must be made.
You are going to die. You might check it out for yourself on thinkahead.ie.
Dr Brendan O' Shea is a general practitioner in Co Kildare. He is lecturer in general practice at Trinity College Dublin, he 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.