End-of-life Care

Part of the debate – in Westminster Hall at 10:30 am on 19 July 2005.

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Photo of Sandra Gidley Sandra Gidley Older People, Non-Departmental & Cross Departmental Responsibilities 10:30, 19 July 2005

I congratulate Mr. Field on securing the debate, but I should say that when I prepared for it last night, I was not quite sure what it was going to be about. Would it be about palliative care? Would the thrust of the argument be about physician-assisted dying? The debate has been about more than that, which makes it difficult to answer—and it feels completely inappropriate to respond to it as the representative of a party, because every Member in this place will have a view on the subject. Some of my remarks will inevitably be personal, but I shall try to divorce them from what might or might not be the view of my party on any of these matters.

I have been presented with five challenges, and the thrust of the debate seems to be that control is a bad thing. Perhaps that was not intended, but that was certainly how the argument came across to me. I must pose the question: what is wrong with control? The logical extension of the argument against control is that we should not have control over the progress of an illness. Why should death be different? That is a wider debate, which society should have, but I must ask the question.

I shall say a few words about palliative care before I get into the more philosophical aspects of the debate, because that subject has not been covered much today. It is most people's stated wish to die at home, in familiar surroundings with their family, but that presents a huge challenge to health and social care services—a point that was highlighted in the Health Committee report. I shall return to that subject in a moment.

Hospices are often a preferred place to go, if people are lucky enough to have one in the area—access is often difficult—because they deal with death very well. The debate is often about palliative care and drugs so that someone does not suffer, but to repeat a point that was made earlier, we often do not deal very well with the emotional aspects of dying that affect the person and their family. That, however, is the hospices' strength.

It is worth noting that hospices contribute about £300 million to health care in England each year, and, as has already been mentioned, volunteers do work worth about £100 million. There is, however, a huge gap in provision. Some 95 per cent. of people in hospices have cancer, but 300,000 people die annually of other diseases, and their end of life is probably not handled in such a considered manner. Not so much work is done to manage their deaths, and attention needs to be paid to that problem. The National Institute for Clinical Excellence, as it was then, examined palliative care, but made the mistake of concentrating almost exclusively on cancer. That was a missed opportunity. We must widen our focus.

In their recent manifesto, the Government pledged to double their spending on palliative care, so it would be useful to know how much money is currently spent, how it is allocated, how much extra money will be available in the next few years, and how that will be phased in. It would also be useful to know whether the Government will ensure that hospices can recover some of their costs from primary care trusts if someone ends their days outside their area.

We have not yet talked about the carers, to whom I pay tribute. We should acknowledge that the debate is not only about respite care. What hospices do so well is to deal with the emotional needs of the carers. That is neglected in other sectors, not through malice but because of other pressures and priorities.

Mrs. Spelman described death as an unknown. I agree. It is almost the last taboo—something we never talk about. She said that people did not wear black, and that various other changes had been made. Sadly, as I grow older I seem to attend more and more funerals, but I have noticed recently that they have increasingly become a celebration of life rather than an expression of misery and gloom. I have recently been to some positive and heart-warming funerals, which were more like rites of passage. It is a positive move if that attitude returns in the last days of life.

We have limited experience of death. That is why we are strongly affected by the experiences that we have. However, the people whom we come across in their dying days can have different attitudes. I recall the contrast between two old gentlemen, one of whom was depressed and asking, "When am I going to die?". The other one was positively looking forward to death. He had a faith, and was asking, "When am I going to see Jesus?" He could not wait to get out of here. The difference that that attitude made to the people around was remarkable. There is a lot to be said for taking steps to prepare people with the idea that death might not be entirely negative.

It is a sad fact that although nearly three quarters of people would prefer to go home to die than to die in hospital, only 25 per cent. achieve that. However, the situation also depends on the hospital. For instance, a small community hospital can deal with the problem well. Sadly, there are often moves to close such beds, in an attempt to encourage care at home, but unless that care is good, we could lose something fundamental. If the death takes place in a busy district general hospital, however, although attempts are made to provide a personal input, that is often difficult.

I suppose that what affected me most personally was the death of my father. All my assumptions about the end of life were completely turned around. My father was the person whom I mentioned earlier who wanted to die. In the end, death came quickly—more quickly than expected—and the family could not get there. I often think that it would have been nice if we could have been involved, because my father desperately wanted to end his days that way. However, I also question whether I would have wanted that. Again, this comes down to what the individual wants, in conjunction with what the family wants, but the individual wish must come first.

I want briefly to mention assisted dying. Since 1977, Oregon has had the Death With Dignity Act, which allows a doctor to write a prescription for medication for a competent, terminally ill adult to self-administer, with the purpose of ending their life. There are strict safeguards. What I found fascinating—this relates to the story about Barbara Wootton—were the figures. Some 17 per cent. of terminally ill patients discussed hastening their death using the Act with their families, and 2 per cent. made a formal request to their doctors for assistance, but only 0.14 per cent. took the full step of using the prescription.

We must consider such options. It is our responsibility to have a wider and fuller debate in the House, and reflect on whether they could be considered. There appears to be no evidence that the law in Oregon has been misused. We talk about choice in other areas of life; perhaps we also need to talk about choice in death.