Feargal Quinn (Independent) | Oireachtas source

The Minister of State is very welcome and the step she has taken in withdrawing the amendment is also welcome, because it means this debate is welcomed by the Government. I know something of the Think Ahead project, which is part of the Irish Hospice Foundation's forum on end of life in Ireland. It is a fantastic initiative which aims at awareness-raising, planning and promoting public debate on issues related to death, dying and bereavement. It is a difficult subject to raise, but if people do not have an open conversation about it, that can bring many problems for families. I was present at the death of my sister-in-law in Our Lady's Hospice. It was a very pleasantly well-planned departure. Her children were with her. For years we had been afraid to talk about death. That was the only occasion on which I came across the work of the hospice and it was what one could call a happy death.

Prior to the 20th century, in Western culture, being without preparation for even a sudden death was considered a huge tragedy. It is amazing to discover that people have gradually moved away from talking about death, because it became a taboo subject. The simple fact, however, is that many studies have shown that there is a much greater satisfaction for patients' families at the end of life when time is devoted to end-of-life discussion.

At present, conversations about end-of-life wishes happen all too often for the first time at the patient's bedside, prompted by daunting questions such as, "If your father's heart stops, do you want us to start it again?" What if one's children had to answer that question? This is the last question someone wants to take responsibility for, particularly for someone they love. Family members, including one's children, may disagree, decisions can be delayed and regrets over the things that should have been said and done surface.

It is also, obviously, much better for the patient when planning takes place. Patients at the end of life who are unable to communicate and who have not documented their treatment preferences through an advance directive are vulnerable to receiving unwanted treatment. This vulnerability is heightened for patients without family or recorded preferences. To take one example, according to the Irish Hospice Foundation, when end-of-life care preferences were recorded in nursing and medical notes, dementia patients were less likely to be transferred to acute care or have unnecessary invasive procedures.

Mr. Des O'Neill, a consultant in geriatrics and stroke medicine, pointed out that "contrary to popular opinion, the greatest danger at the end of life is not that you will be over-treated, but that you will be under-treated, in a system that has strains of ageism and prejudice against disability, in particular dementia."

Studies of surrogate decision makers such as family or doctors have found that surrogates and patients often do not agree about the use of life-sustaining measures for patients. One medical study from the United States which reported discussions between patients and family care givers about treatment preferences found that in 60% of cases there was not agreement between patient and care giver about life-sustaining measures desired for the patient who is near death. That is a scary thing to consider. Therefore, on a policy level, we should do much more to ensure that younger people also plan for the future. It was interesting to hear the points made. I appreciate the tabling of the motion. It is helpful, as it gets us all thinking about the issue. Senator Marie-Louise O'Donnell has given us the opportunity to think about things we would not necessarily have thought of otherwise. There is a significant chance if something does happen to a person that one might not get the treatment one wants.

I wish also to draw attention to the need for more public awareness about a proper document on end of life. A form devised by Think Ahead allows people to record the location of key legal and financial documents. That might be the wrong thing to think of at this stage but it is very important. I would love to see a situation in which such a form will be as normal as a doctor giving a routine check-up. In terms of financial issues, unfortunately, a lot of people are still not making wills to ensure their affairs will be taken care of according to their wishes. A will is also helpful in avoiding disputes. The fact is that the less family members, especially children, have to deal with financial issues, the more easily they will be able to put their lives back together. We have heard something in that regard in the course of the debate. The grieving process will be less difficult if the family's or the children's financial future is clear and secure.

I am very glad this subject is also opening up the conversation about organ donation. This is a subject that has been close to my heart. I brought legislation before the Seanad some years ago on presumed consent. The more people who record their preference for donating organs, the more lives can be saved. I am concerned that the Bill never became law. It should be enacted. I hope the Government will return to it.

We have an obvious problem in that many people cannot afford adequate end-of-life care, yet they have capital locked up, for example, in their house. The Government must look at ways to allow the elderly to free up more of the capital locked into their homes, thereby better providing for themselves. The UK-based charity the Joseph Rowntree Foundation has piloted a scheme in the United Kingdom with three local authorities in which elderly people can sell a stake in their home which buyers would reclaim after their death to pay for modifications such as a walk-in shower that would help them remain in their homes rather than go into a nursing home. The idea is to free some of the money locked up in the property. Perhaps we could take similar steps in this country. I am aware of several older people who on paper are not badly off because they own their own house, but they want to stay in the house and not sell it. However, they need to free up some cash to survive more comfortably on a day-to-day basis. I would love to see us look at some of the best international practice in this area. There is much potential in this regard when considering end-of-life care.

Perhaps the Minister of State could indicate where we stand in terms of the provision of specialist training in end-of-life care for family doctors. Are there any plans to introduce that?