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Westminster Hall
Tuesday 19 July 2005
[Mr. David Marshall in the Chair]
End-of-life Care
Motion made, and Question proposed, That the sitting be now adjourned.—[Mr. Roy.]
9.30 am
Mr. Frank Field (Birkenhead) (Lab): May I first say how pleased I am that we are having this debate today? I shall give a history of the reasons for it. I wrote to Mr. Speaker to ask for a debate on dying, as did my hon. Friend the Member for Meriden (Mrs. Spelman)—I shall happily call her my hon. Friend today; no doubt we shall both say in our own way why we wanted the debate. It is significant, however, that the title of the debate that appeared on the Order Paper was "End-of-life Care".
One of the main points that I shall make is that dying has largely been taken away from us and from society, and has been privatised and hidden away. That is a huge loss for us. In the past, most of us would have lived in families in which we experienced other family members dying, and we would have learnt from that dying. In helping those individuals, we would have learnt some of the great truths about living. If there is one idea that I want to advance, it is that we should view life as a great play—but that we have now got ourselves into a habit of mind whereby most of us leave the theatre before the last act. That being so, it is very difficult for most of us to make sense of why we are here, and what our purpose is.
As I said, the request was for a debate on dying—a subject that I hope we shall easily be able to include under the title "End-of-life Care". The request was made because my hon. Friend and I want there to be greater public recognition that dying is one of the most crucial parts of our lives. That simple fact needs to be recognised and given the place in our lives that it warrants. I hope that the debate, with hon. Members of very different views and backgrounds contributing, will challenge the view that dying is a private event that most people negotiate alone. It will be a debate that questions why most people die alone. I suggest that it is out of embarrassment and more that most of us shy away from this simple but crucial event in all our lives.
The Minister will be relieved to know that I am not asking for any major Government initiatives on this subject. It is not that sort of debate, and it is not that sort of issue. There is, of course, a role for Government. That official role is to help us to see the extent to which our full humanity is often and mysteriously completed in the process of dying.
Why have this debate at this time? For me, the first and perhaps most important reason is that my own mother died a few weeks ago. I was struck by how unprepared I was for that event, but also by how well prepared she was. Looking back on it, I am appalled at how much she needed to teach those of us around her about the process that was going on, and what she wanted from the process of dying.
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The debate was also initiated because of the work of a constituent of my hon. Friend the Member for Meriden—James Woodward, the priest warden of the Foundation of Lady Katherine Leveson. Part of the debate is about not only the celebration of dying itself, but the fact that there can be a centre of such excellence, which is trying to help us to address this key question. James Woodward recently published a book entitled "Befriending Death". In other words, although it is the natural response of many of us, we should not be frightened of death but regard the process as a friend, and a crucial part of our lives.
It is appropriate that we are having this debate now, because in the last week we have heard of the death of Dame Cicely Saunders, who did so much to transform the care of people who are dying and to deal with, and wherever possible eradicate or minimise, their pain. She thought, as her foundation continues to teach, that there is also a spiritual side to our nature that needs to be recognised in the process of dying. The spiritual side does not have to be attached to any religion. People can be highly spiritual and have no formal religion—and as we know, there are also those who are highly religious yet still manage to disguise any spiritual side of their nature, whether they are living their lives fully or in the process of dying.
James Woodward's book is, in its own unique way, a response to a best-selling Consumers Association pamphlet published 40 years ago, "What to do when someone dies". Forty years later, the book asks an even more pertinent question: what do we do before someone dies? In posing that question, I do not suggest that we do not need to be prepared when somebody dies, but I am trying to get back into the public debate the fact that the process of dying is the last great act of the individual play that each of us has to enact in this world. While I draw a great deal on James Woodward's work, I also draw on the work of Dr. Anne Richards, a member of the Archbishop's Council team who has written profoundly on this issue.
Let me suggest five reasons why some of us find dying such an uncomfortable issue to deal with. The first, and most obvious, is that we live in what has been called a death-denying society. Most of us gear our lives to the future: we plan what we are going to do at the end of our Session—where we will go, what holidays we will take, what is happening in our constituencies and what we will do with our families. The crucial point about dying is that we have to give up thinking about the future, and take on a different frame of mind. The first reason why dying is such a difficult topic for us is that it strikes at the basis of the society that we enjoy being part of but which, because it is so death-denying, is a significantly impoverishing society.
The second reason is that the process of dying is immensely important, and each of us needs to learn how we are going to do it. For most of our lives, we do not question how our bodies live. We take that for granted until we come to the final stage, at which we somehow deny that our bodies have a right to do their dying in their own way. The second challenge, therefore, relates to the process of how we die and how we surrender to our bodies, to allow them to continue doing the work for which they were created.
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The third challenge to our death-denying culture is that our society is very bound up with the body beautiful. Practically every advertisement for the things that people think we need to lead happy lives would lead one to think that everyone in our society was aged between 15 and 25, and possessed remarkable beauty. The body-beautiful culture is reinforced by the status that we have surrendered to celebrities, or built up around them, in our everyday lives. The debate is about the fact that it is all too easy to overlook the way in which we indwell in our bodies, and that our bodies have a right to die in the way that they wish, rather than in the way that other people might find convenient.
The fourth challenge that a debate on dying poses to our common culture is that it is a full frontal attack on the view that we are not proper people unless we are in control of everything in our lives, including the people who make our lives worth while. Each of us has to face the crucial fact—indeed, some of us are facing it now—that our bodies grow old and change, often in ways that we cannot control. Again, however, there is individual and collective denial of the whole process of living and indwelling in our individual bodies. Our bodies therefore behave in a way that offends our modern view of how we and the society around us should operate.
The fifth challenge is to our abhorrence of the possibility that our frail bodies, which our modern culture somehow despises, should become the final arbiters of the relationship that we have had, and will have, with what is known as the process of our own lives.
The debate is about those fundamental challenges. I hope that others will talk about the palliative care that we rightly offer to people who are dying, because we too might live out our last moments on this earth in such circumstances. I do not want to minimise the importance of that issue in any way, but I am trying to draw the debate slightly wider. Given your background, Mr. Marshall, you will have recognised from the beginning that this debate challenges the growing voice in favour of euthanasia. The euthanasia lobby is now much more slick at presenting its arguments, but the debate is a challenge to members of that lobby, because from their angle, the idea is that we should be able to control the final parts of our lives and decide when they will be completed. I question whether we should have that view of control, and, indeed, whether we should have a right to have such control.
Joan Ruddock (Lewisham, Deptford) (Lab): May I offer my right hon. Friend my condolences on the death of his mother? I identify very much with his opening remarks, in particular. However, when he speaks about the fact that people's bodies change, he must, I think, allow that people's attitude to their death may change too, that even the best palliative care available may not satisfy the person who believes that their time has come, and that they should be in a position to make that decision. No one wants to impose that on others, but my right hon. Friend has spoken much about the individual's spirituality and philosophy, and I would want that choice—only the choice.
Mr. Field : I do not want to dispute the genuineness or the legitimacy of the views expressed in the debate, or to
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suggest that we should not engage with them. I do not want to narrow the debate—not that you, Mr. Marshall, would allow that—or to deny the legitimacy of what is being argued, but I question whether people's views are constant over time.
By way of an example, a great friend of mine, Barbara Wootton, proudly announced to me one day that she had joined EXIT. At the time, one of its members was in court; the case concerned events in which a daughter returned home and heard her mother in enormous distress in the bedroom. She rushed upstairs where the EXIT member, wearing a woolly hat, was eating a banana, having thrust a plastic bag over her mother's head.
No one is suggesting that most people will ever be in that position, but I allude to it because Barbara said that she had joined EXIT. She was a Member of the other House, with very talented and knowledgeable doctors, and she had persuaded one to give her knock-out pills should she ever, as my hon. Friend the Member for Lewisham, Deptford (Joan Ruddock) describes, feel that her life was unsatisfactory and want to draw it to a conclusion.
The next part of the story is that during a summer recess I received a message that Barbara was in a geriatric ward, and I went to see her, thinking that during that meeting she would ask me to go and get those drugs. On the way to the hospital I had made up my mind that although I disagreed with the approach, my great friend had every right to end her life in the way that she wished, even though I would be guilty of such an offence that if the matter became public knowledge I would lose my seat. I believe that she had that right—but what struck me was that she never once asked for those knock-out pills, and that she struggled right to the end, in a way that my mother did not, to stay alive.
I am just sounding a note of warning about whether our views remain constant. When the Mental Capacity Bill was going through the House I voted for living wills, but because some members of the public thought that I must have voted against them they wrote me abusive letters, saying "Why do you deny me the right to determine when my life should end?" I wrote to each of them saying "I am pleased to hear you have a living will. Do you know what the words 'withdrawal of care' in your living will mean?"
I explained that it means the withdrawal not just of medical support, which most of us would understand, but food and liquid, which can lead to a horrible death. I sent for the leaflets that four of the societies most concerned with promoting living wills produce. Only one of them, in a footnote small enough to make glasses better than mine necessary to read it, explained that withdrawing care would mean the withdrawal of food and liquid.
I welcome my hon. Friend's intervention, because we need to debate more widely the rights of people in the circumstances that she described, and also the products on offer from groups promoting such an exit from life through the agency of living wills.
Joan Ruddock : I think that my right hon. Friend is making a case for choice, and for choice that is reliable and safe—if safe is not an odd word to use in such circumstances. That is why some of us support the
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concept, which certainly needs further debate, of physician-assisted dying. No one wants to put anyone through the terrible circumstances that he has described, but there are alternatives. That is the debate and the choice that we want. When the House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill took evidence, it found that people who had that choice—as my right hon. Friend's friend did—often chose not to use it.
Dr. Evan Harris (Oxford, West and Abingdon) (LD) rose—
Mr. Field : I want to take the next intervention, but I will come back to the point made by my hon. Friend the Member for Lewisham, Deptford.
Dr. Harris : I am grateful to the right hon. Gentleman for allowing me to intervene, and for the tone of his remarks. I want to question his evidence about cases in which care—nutrition and hydration—is withdrawn either because the patient rejects it, as every patient is entitled to and as many do, or because, in the case of incapacity, it is felt not to be in the best interests of the patient for it to be maintained. On what basis does he believe that such deaths are horrible? Is he not aware that steps are taken by those looking after people medically to ensure that death is easy, whatever happens?
Mr. Field : My hon. Friend the Member for Oxford, West and Abingdon (Dr. Harris) is making, I hope, the point that I am trying to make—but if medics are bound by a living will, and we have so crudely defined what treatment is, they may not have the choice of looking after someone and giving them a good death in the way that we would all welcome. I am not in any way trying to argue for less choice, or to close the debate down. I am grateful that my hon. Friend the Member for Lewisham, Deptford is here to make those points, because it pushes the debate and makes us think more clearly about this crucial area. She makes an eloquent plea for choice, and for people having the right to make the decision themselves—but I want to counterbalance the importance of that view with how older people feel about the burden that they might be. In some of the papers produced by James Woodward's foundation, it is reported that older people talked about the process of dying in terms of wanting to die without being too much of a burden on other people—as if it could ever be too much of a burden to look after someone who is dying.
My worry is that although talking about choice makes a powerful debate, if we are not careful we could build up a culture that leads old people to feel that they are such a burden that they ought to take the opt-out clause earlier rather than later. I know that my hon. Friend in no way supports that view. It is just that sometimes when we operate the law or make new laws in this place, there are unforeseen consequences, and I am anxious that that should not be one of them.
I am making a plea in opposition to the euthanasia lobby. The body has a right to die in its own time and in its own way. That thought goes against the modern view that we can move swiftly from life to death and wipe out the intervening stage—the process of dying. Dying well is about putting aside control, which, as I have tried to
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explain, is bound up with the essence of what we think of as a proper life. Dying well is about sometimes helping people to face the terror of dying and, by being with them when they die, learning some of the important lessons about the significance of life that become only too apparent at that stage. People might find themselves in a situation similar to the one in which I was recently with my mother, in which she was doing all the teaching and we were doing all the learning. On reflection, I feel that I came to my mother's deathbed inadequately prepared to meet her in the process of her dying.
In conclusion, the main point that I have been trying to make is about bringing dying back into life. However, the dying process is also about gathering the fragments of our lives together, and trying to make sense of our lives. If our society continues to make dying a private affair, in which so many people die on their own—or, if they are lucky, with a nurse by their side—we are taking away what I described as the last act of the great play of their lives. Sometimes, dying is an opportunity for people to make amends for events that they have regretted in their lives, but it can also be a time of celebration, when people can thank others for the friendship and love that they have had during their lives. Dying is also, as those fragments are brought together, essentially about letting go of the future, and letting our bodies take control of us. Those are the comments that I wanted to make in opening this debate, and I am grateful to Mr. Speaker for choosing this as our topic.
9.57 am
Mrs. Caroline Spelman (Meriden) (Con): I begin by paying tribute to my right hon. Friend the Member for Birkenhead (Mr. Field), whose commitment in the House to the needs of the elderly has been unparalleled, in my experience. It was my right hon. Friend's idea to hold this debate, and when he first approached me about securing it I felt honoured to be asked. As far as I know, it is unprecedented for a Conservative Front Bencher and a Labour Back Bencher to secure a debate jointly. The nature of the subject warrants a cross-party approach, and I hope that that will help to improve the quality of today's debate.
My right hon. Friend approached me specifically because, as he said, the Foundation of Lady Katherine Leveson for the study of ageing, spirituality and social policy is at a place called Temple Balsall in my constituency. If hon. Members ever have the time, when travelling north from London and passing through the very middle of England, they should visit that remarkable foundation. It was built by the Knights Templar in the 12th century, and makes a significant contribution to the care of the elderly. Interestingly, it is also integrated with a primary school, so at times the elderly are brought together with the very young to share their experiences. That in itself is remarkable.
As my right hon. Friend said, the centre is run by the Rev. James Woodward. It was his experience as a chaplain at the Queen Elizabeth medical centre in Birmingham that first galvanised him into writing, and then into directing a centre for the study of ageing and death and how we cope with it. I do not know whether he coined the phrase a "death-denying society", but that is a fact of modern life.
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As a mother, I am very aware that because infant mortality has declined, there is less awareness of death among children. It therefore comes as a rude shock to young mothers when things do go wrong in pregnancy and childbirth, as they sometimes do. Such things are not talked about in our society. These days, people do not tend to wear black after losing a member of their family. In times gone by, such habits were a way of helping society come to terms with the reality of death. These days we hide it away, which makes it much harder for those who are dying and for their loved ones.
I add my recommendation to that of my right hon. Friend for the book "Befriending Death", which I have read cover to cover. It is a useful book if one has friends or family in that position, and it is not a heavy read at all. Some hon. Members might have felt nervous about attending this debate, which could be seen as being on the heavy side, but in a way death is a celebration of life. That is the important point about trying to bring the positives out of it, which is a strong feature of the book.
Mr. Field : One review of that book, written by one of my hon. Friend's constituents who lives at the foundation, said what a wonderful book it was, but then asked, "Who could I possibly give it to?" Her reason for saying that was that in our society people might take it amiss if one wanted to discuss with them the business of dying.
Mrs. Spelman : I assure you that we are not advertising the book, Mr. Marshall—but in general we do not talk about dying because it is not something that people like to discuss, which makes it very difficult when death comes to a person, or to a member of their family, and there is a need to deal with it.
The debate was applied for last week, but today is a most timely moment to hold it, because it has now also become a tribute to the work of Dame Cicely Saunders, the founder of the modern hospice movement, who passed away last week. Her story is very interesting: she trained as a nurse, became an almoner and then a medical secretary, then went on to become a doctor, before opening a hospice. That remarkable application to learning all the requisite skills for the care of others is to be commended.
Dame Cicely set out to cater for cancer patients in particular, after the Marie Curie Foundation identified a gap in NHS provision for their needs, as long ago as 1952. She advocated an approach to pain relief demonstrating that intermittent reactive sedation was far less effective than achieving a steady state in which the dying patient could still maintain consciousness and enjoy some quality of life. That was revolutionary at the time, but is now well accepted.
It is interesting that for herself, Dame Cicely Saunders preferred the idea of a death that had some forewarning, giving her time to reflect on life and put practical and spiritual affairs in order. For someone who saw many people depart this life it was an interesting conclusion to draw, and it is in that respect that her life has been taken up and pursued by the Leveson centre in my constituency, which is constantly considering how palliative care can be improved and the quality of life in our last days made better.
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I expect that all those present have some direct personal experience of losing a loved one. We are lucky if in the natural order of things our first experience is to lose someone who has led a full life—perhaps a grandparent who has reached the proverbial fourscore years and 10. But for others the experience may come much earlier and unexpectedly in the tragic loss of young life, which leaves us smarting at the perceived injustice. Sadly, because of what happened on 7 July many families are experiencing great pain now, and will do so in the weeks and months to come. When I went to sign the book of condolence in Embankment gardens and saw the flowers I was struck by how many young women had lost their lives.
When someone close passes away, one starts on a journey of grief, which feels strange the first time round, with shock and numbness followed by anger and great sadness, finally giving way to acceptance in most cases. However, for some people that journey never progresses to the healthy outcome of acceptance. We need to do more about helping grieving relatives to understand that process. Odd though it may sound, a successful grieving process is a rite of passage, and when it comes around again, as it usually does, we can recognise the stages in ourselves—but the lack of preparedness the first time is hard for everyone.
Both my parents passed away some time ago in hospital, and that made me acutely aware of the difference that health personnel can make. It was a shock to discover on my mother's notes the dreaded words, "Not for resuscitation", without any discussion having taken place with a member of the family. It might have been the right course of action, but it was the wrong way to help those who are affected. If one has never seen someone dying, it is a shock. It was only hearing about my sister's nursing experience by telephone afterwards that made any sense of it all to me.
With my father things were different. I was there at the end, supported by a nurse who explained what was happening and who kindly confirmed when the moment had come, because it can be hard to know. In both cases, however, the hospital setting provided only the barest scrap of dignity, and the drawn curtains were no shield against the routine noises of life on the ward. That led me to feel that we could surely do better. Death is such a monumental experience for most relatives that the environment in which it happens has a considerable effect.
Some 64 per cent. of hospital patients express a wish to go home to die, but only 25 per cent. achieve that. Once people are in the system, the health service seems reluctant to let them go. Many people fear going into hospital precisely because they worry that they might never get home again. A particular ward in my local hospital suffers from the connotation that it is a place from which people may not emerge again. We need a better solution to such problems.
The hospice movement is still stretched, and is dependent on the good will of voluntary donors. Of the £450 million spent annually on hospice and specialist care services in England, the NHS contributes only 35 per cent., while the value of the work undertaken by volunteers in hospices is estimated at £100 million. We must bear in mind the fact that the dedicated work of the hospice movement covers a multitude of jobs. While 30,000 people die in hospices each year, there are
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41,000 new admissions and 110,000 new patients, who are seen by palliative care home care nurses. The care that they provide gives the patient options at a limiting time of life.
In their manifesto, the Government promised to double funding for palliative care in England, yet we do not have published figures for what they spend on it now, so it is difficult to know how much extra funding will be available. I am sure that the Minister will be able to pick that point up when she responds.
We do know, however, that current NHS expenditure includes contributions to adult hospices, adult community palliative care services, children's palliative care services and general palliative care services. None the less, the Health Committee report noted that there are still gross deficiencies in palliative care provision in the UK. The National Audit Office reports that half of all hospital patients experience moderate to severe pain, with only a quarter of them feeling that hospital staff did all they could to relieve it.
Care can vary even from ward to ward within a hospital. There are inequalities in provision around the country. The need and demand for provision is not uniform, so a one-size-fits-all approach to palliative care will not work. For example, northern cancer networks need 60 per cent. more service provision than Thames Valley. Out-of-hours provision, too, is distinctly patchy.
Question marks over the security of funding mean that there are difficulties with the availability of palliative care. Funding for palliative care in cancer networks is ring-fenced until 2006–07, but the ring-fencing will then be removed, and there is a danger that the funds will be used to meet primary care trusts' financial deficits. Careful thought needs to be given to that possibility.
There is an excellent hospice called Warren Pearl in my constituency, run by the Marie Curie Foundation, but it is located in Solihull. For constituents who live on the Chelmsley Wood estate, which is well to the north of Solihull, getting to the hospice involves a difficult journey by public transport. Culturally, Solihull is not the town towards which they are orientated. There is, therefore, still a difficulty with localised provision of palliative care.
That highlights some of the severe inequalities experienced across England, particularly found from one PCT to another. When I last visited St. Mary's hospice in Birmingham—it is, of course, much larger because it serves a much larger city—I was disturbed to find that we do not have a pain consultant in the whole west midlands region, although it has the same population as Denmark. That is simply because Birmingham is not a designated centre of excellence for pain consultants.
That may partly explain the long delays that my constituents experience in waiting for a referral to a pain consultant. A recent answer to a parliamentary question states that almost 1,000 patients have not yet been seen after 13 to 17 weeks of waiting for a referral to a pain consultant. More than four months is a long time for a cancer patient to wait for such essential help. Furthermore, the Association for Palliative Medicine is concerned that only a quarter of the number of consultants needed to fill the places are enrolled in the four-year training.
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From that, I conclude that as a nation we do not do death very well. That could be one reason why there is such a rise in interest in euthanasia and living wills. I urge the Government to consider the issues that my right hon. Friend and I have raised about the need to engage with the quality of death, which is a problem in our country. Chronic conditions and pain relief tend not to be the subject of Government performance targets, with the result that they slip down the agenda.
It is not easy to live in this death-denying society. People find death difficult to talk about, and are not sure what to say to the bereaved. The Government could do more to help both those whose lives are ending and those who must live on with the memory.
10.11 am
Peter Bottomley (Worthing, West) (Con): I congratulate my right hon. Friend the Member for Birkenhead (Mr. Field) both on the idea of having this debate and on introducing it together with my hon. Friend the Member for Meriden (Mrs. Spelman). I hope that he is right to say that the debate will go wider than just the issues of euthanasia and death on request.
As it happens, last night I was at a dinner where the person introducing the speaker collapsed and fell flat on the ground. He did not die; the electricity for his pacemaker had stopped working, and afterwards he got back on his chair and carried on with the rest of the evening. However, it was an amazing example of what could be seen as a sudden small death—although he has now come back to life—and it is the second time that I have seen that happen. It is an aspect of death or near death that makes us realise how our bodies work, and sometimes do not work.
Normally when discussing such issues, people are talking about the elderly and those who have some understanding that their life is coming to an end, but it is not always like that. One of the most useful things that I have heard was from a mother—I forget whether her child was three or 13 years old—who said when the child died, "I have to look on it as a life completed." Death is as natural as life, and when bodily death comes it is a life completed. It sometimes happens in circumstances that are mucky, unpleasant and awful—but then birth can be like that as well. We need to recognise that death is as natural as birth, and to be able to talk about that.
My wife—my noble Friend—opened the first exhibition for the funeral service. She is a patron of, or has some honorary title in, Cruse Bereavement Care, and she came away from the exhibition in Birmingham saying that we should all pay more attention to our deaths and funerals than to marriage. Not all of us will marry, but we will all die. All of us can die only once, while some of us marry more than once—I have not done so yet, but who knows what is in the future?
My wife has started talking about how people can prepare. For example, instead of waiting until someone dies, why do they not prepare a piece of plywood covered in pictures of life that can be easily screwed on to the side of a coffin? That would be a way of being open about death. My father-in-law always used to have his coffin stools ready, although in fact he died in Greece—by mistake, as it were—so they could not be used. What I am trying to say is that people can put in as much effort and time and, in a way, have as much fun in preparing
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for the events that go with death as they do in preparing for a wedding party. My wife also says that 100 years ago, people were very good at death but not very good at sex, and asks why, as it is now all hanging out, we do not tuck it back in again, zip it up and bring death back into the conversation in a more open way.
My mother thought that it would be sad to miss the party after her funeral, whenever that came. She had no understanding that she might be close to death, but she saved up her old-age pension for a time to give the most marvellous party, and invited all the people whom she hoped would be there for the funeral. In fact, her experience was that after the benefit of a misdiagnosis, she died within three days of finding out that she was terminally ill. She had time to bring her children together, and while she was unconscious a senior member of my family—I hope that he will not mind my saying so—said, "Virginia, you had better get out your diary, because you are going to have to arrange the funeral." I hope that that sounds hearted rather than hard-hearted.
In 1978 I went to San Salvador as part of a human rights delegation. As I remember it now, our aim was to try to delay the assassination of Archbishop Oscar Romero. I asked him how he felt about the likelihood that he was going to be assassinated. He said, "Well, it has happened to some of my priests. Death comes, and I am going to get on with doing what I want to do before it comes." Tragically, and predictably, he was killed 18 months later, while celebrating mass in a hospital chapel. I went as part of the British representation to his funeral, representing the British Council of Churches, and at his funeral 14 more people died. They were crushed rather than shot, but when one sees 14 people laid out dead on a cathedral floor, who were alive an hour before, one begins to become rather more accepting of death. One does not accept the reason or the cause, but one accepts that death is a natural thing.
The problem nowadays is that many people do not see a dead body until they are about 60, when one of their parents dies. I am not suggesting that people should just go and find the nearest dead person, but there is something to be said for children finding it perfectly natural to see a dead body in a casket. They will become less frightened of what it is like to see someone who is dead. When I am dead, people who see me will see someone who is natural but lifeless. That is one of the points that my right hon. Friend the Member for Birkenhead was trying to get across in saying that we should open the subject up.
I do not want to spend much time on what I call the "death on request" debate, because that will continue. However, when people start arguing for that choice, I always remind them of the story that my right hon. Friend told us about Barbara Wootton. When I first heard it in the Chamber of the House of Commons, I thought to myself, "That's something I shan't forget." Although people can draw various lessons from it, that story is one that we should bear in mind: decisions are not decisions until they are carried out. Advanced suggestions should not necessarily be taken as the last word in people's minds.
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I understand that in the Netherlands they started by saying, "Let's allow an accelerated, deliberate death in rare cases," but I think that in the Netherlands now, more people are put to death—or rather, as I do not want to be pejorative about it, I should say meet their deaths—at their request, than commit suicide.
It is not the rare hard cases that are in question; the practice is becoming close to what people call tidying up, or, I suspect, creating a pressure to say, "I'm in the way; put me down"—or rather, as I do not want to speak of people as if they were animals rather than human beings, "End my life." That is why I shall not vote for death-on-request provisions. I am not an expert on when the ability to end one's own life shifts enough to become the ability to put someone else's life to an end, but if I am asked whether I believe that death on request should be made lawful, I answer no.
I would like to add one more point about palliative care, which I made to the Healthcare Commission at its meeting yesterday. The Government need to work out the level of funding that they expect to provide to the hospice movement, assuming that there is not some gross overprovision somewhere. No one wants great cathedrals of hospice care that are not properly used, but as for hospice care at home, day care and residential hospice care, it is time for the Government to move forward to the time when they can come to an agreement with the hospice movement about the level of funding that it can expect. Again, it is my wife—and noble Friend—who has taken an interest in such matters. The movement should be told, "We value the voluntary contributions of time and dedication and we value the support and money that are given, but a basic level of state funding for hospices will be given in the three categories of hospice care at home, day care and residential hospice care."
There is a duty to make hospice care possible at the end of life, and to provide that kind of comfort—and, for that matter, to relieve the acute services. People might otherwise be in hospital, where they should not be if they are not going to be cured. When it is not possible to cure, it is possible to care, and people can be helped to cope.
10.21 am
Dr. Evan Harris (Oxford, West and Abingdon) (LD): I welcome the debate and the speeches of the right hon. Member for Birkenhead (Mr. Field) and the hon. Member for Meriden (Mrs. Spelman). We are all grateful for the opportunity to debate the issue. Some of the points that have been made are reasonably philosophical and sociological, and it is not easy to give an immediate response. We need to read the record first, and think further about them. However, I shall respond now to some of the points that have been made.
I am a former hospital doctor, and for the past few years I have been a member of the British Medical Association's medical ethics committee. I do not speak on its behalf in this debate, but obviously my views are informed by discussions there. The BMA, of course, recently changed its stance on assisted dying, which has already been touched on in the debate, to argue that the
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question is one of ensuring that there are safeguards rather than of actively opposing or supporting a change in the law.
Peter Bottomley : Would it be fair to say that it is not certain that the BMA decision was taken at quite such a representative forum as people might have expected, and that debate may continue at the BMA about it?
Dr. Harris : As I understand it—and I am a long-standing member of the BMA and have held office there in the past—the annual representative meeting, which was where the policy change took place, is the sovereign policy-making body. It includes many representatives elected from the divisions and the crafts—the various types of doctor in the BMA. The meeting was quorate too, so the procedures were voted on by the quorate, sovereign policy-making body of that trade union. Some political parties make policy in a way far less democratic than allowing the sovereign policy-making body, in a quorate meeting, to debate and discuss such things openly with the support of the majority of those present. Perhaps the hon. Gentleman, or others who make the point that he was making, could be more specific about their concerns.
However, the hon. Gentleman is right to say that the debate will continue within the medical profession. Nevertheless, the majority view was clear. That does not mean that there will not be views held on both sides of the debate, and that is why the BMA was probably right to choose neutrality. It will never be able to please all parties. I think that it was right to choose a motion from the Oxford division of the BMA in my constituency—a motion that I confess I had something to do with—as the basis for the position that it took.
The right hon. Member for Birkenhead said that he felt that dying had been in some way privatised and taken away from society. I do not think that he meant privatised in the commercial sense; I thought that he was going to say that dying had been too medicalised, with the advances in palliative care—and, indeed, the heroic efforts that are made to keep people alive. Many people die now surrounded by doctors and nurses struggling to keep them alive, although a significant number die with good palliative care.
I note that the right hon. Gentleman applied for a debate with the title "Dying", but that was not allowed. I understand that the rules are that debates must be about things that are the Government's responsibility, and the Government might argue that they are not responsible for death—at least not directly—so I understand the difficulty of the House authorities in arranging a debate with that title. None the less, we have had the opportunity to raise a number of issues in this debate.
I agree with those who have said that we as a country and a society—including the House—do not deal with this subject well and that we shy away from it. There is a huge "yuck factor". People feel uncomfortable, perhaps because of their own memories or because they are concerned for others who might be worried. That is understandable, but as a society, and certainly as a legislative body, we have a responsibility to address these issues sensitively and to tackle them. Because the issues are not party political and it is unlikely that they
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would be subject to whipping, business managers do not want them to be discussed, debated or voted on, but there is an urgent need for both Houses of Parliament to discuss, for example, medically assisted dying. That issue does not affect many people, but for those whom it does affect, it is a profound issue. Those of us in this Chamber might disagree about what we would like to see, but I do not think that it can be argued that we do not have a right to debate the issue—or to vote on it, for the first time in many years.
The private Member's Bill promoted by Lord Joffe, the Assisted Dying for the Terminally Ill Bill, is a step forward. It has just come from a House of Lords Select Committee with a recommendation that it be given an automatic Second Reading and sent to a Committee of the whole House for detailed scrutiny. I hope that if and when that happens, and if the Bill has a Third Reading in the House of Lords and comes to this House, time will be found for us to debate it.
I shall now deal with a couple of points raised in the debate. With respect, I was not entirely sure what the right hon. Member for Birkenhead was trying to say with his story about Barbara Wootton. I think that he was showing that people can change their minds, even if they are supporters of assisted dying, and that they have, and should have, control and the ability to change their minds right until the end. In Lord Joffe's Bill, there is a specific requirement for any desire for assisted dying to be repeated, consistent and checked, not only between the doctor and the patient but by another doctor and others. I think that the right hon. Gentleman also said that he would have been willing to break the law, with the consequences that flowed from that, to assist the suicide of a friend, even in the generality, without the urgency of a terminal diagnosis, great pain or indignity. I think that that suggests that it is probably a common practice. Indeed, surveys have suggested that some doctors do break the law, and that a law to prevent something like that is not a safeguard against that happening, because people are willing to break the law to act compassionately.
I think that such things should be done above board; they should be regulated, controlled and counted. That is what the Dutch have found, and that is why when they introduced their system it proved popular and has been supported. Indeed, studies have suggested that the number of deaths in which people are assisted to die, or voluntary euthanasia takes place, has been reduced because of the regulation.
The hon. Member for Meriden made a point about "do not attempt resuscitation" orders. Those are misunderstood, and again we need to ensure that we have a debate on this subject. It is appropriate that such orders are discussed with the patient, but it is for the patient to decide and not, in my view, for relatives to take a view unless invited to do so by the patient. It is a private matter. That discussion needs to be had with people in a sensitive way as they enter hospital, because anyone in a hospital is liable to die. If someone is liable to die, a crash call will go out and they will probably spend their last few moments undergoing quite serious medical intervention. If they do not wish heroic efforts to be made to resuscitate them, that idea needs to be broached with them carefully and addressed.
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There are strong arguments for us to move towards legalising assisted dying. The issue is all about ensuring that people have the choice, and that it is not forced on people who do not want it. If people are terminally ill and in pain or suffering indignity and have had the option of palliative care, they should be entitled to have their autonomy respected on that important issue. I agree with the right hon. Gentleman that this does not involve many people, but for those people it is one of the most important decisions. I hope that in due course we will have a chance to debate, and vote, on that issue within this important subject.
10.30 am
Sandra Gidley (Romsey) (LD): I congratulate the right hon. Member for Birkenhead (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
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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.
The hon. Member for Meriden (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
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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.
10.40 am
Mr. Simon Burns (West Chelmsford) (Con): I begin by offering my condolences to the right hon. Member for Birkenhead (Mr. Field). I also thank him for securing the debate and giving us the opportunity to discuss a deeply personal and emotional issue that also has a practical side—the care that should and must be provided for those in the last days, months and years of their lives.
I must confess that I found the right hon. Gentleman's speech deeply moving and extremely thought-provoking. I am not qualified emotionally or from practical experience to enter that debate or to discuss some of the deep issues that he raised. I do not have the experience, through good fortune and probably because like many other people I have failed, or refused, to confront the issue. That is why I will read very carefully what the right hon. Gentleman said when Hansard is published tomorrow. It made me think and wonder a great deal about an issue that we must all confront and consider, rather than brush under the carpet.
In many ways, caring for the dying is similar to caring for the elderly: we should ensure that the most appropriate and individual care is provided and that help is provided for family members and/or carers. Many people's immediate reaction is to reflect on the tremendous work of the hospice movement and to see the hospice as the bedrock of support for members of their families who may be suffering from terminal illness. Most of us, I suspect, are fortunate enough to have hospices in or near our constituencies that provide that help for adults.
It goes without saying that hospices do a fantastic job, supported by the whole community through fundraising and other assistance. This Government, and previous Governments, have introduced a level of funding that covers a significant proportion of the day-to-day running costs. However, two issues connected with adult hospices need to be addressed.
Supporting the hospice movement is tremendously hard work, which is done with great devotion by many members of the public who raise funds week in, week
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out. Now the costs of hospice care are escalating dramatically, and that is becoming even harder work. The Government have reflected that fact and increased funding—but I would like to see funding increase from 34 to 35 per cent. of day-to-day costs to a flat rate of 40 per cent. I certainly would not want any Government to pay more than 50 per cent. of hospice costs, and neither would the hospice movement; it feels that that would threaten its independence. However, we still need to provide extra money.
On the subject of assisting the hospice movement and making its life easier, I appeal to the Minister about the practical problem caused by the fact that many hospices are covered by a number of primary care trusts rather than one. With the devolution of funding to local level, PCTs play more of a role in assessing their contribution to the hospice movement. If as with my hospice, nine PCTs are involved, it is time-consuming and frustrating to have to deal individually with each of them. If anything could be done on a practical level to make them into a united single unit for dealing with hospices and resolving matters of funding, that would be a tremendous boost.
It is not only adult hospices that provide that valuable service; sadly, young children die too. There has been a dramatic growth in children's hospices, yet their funding from the state is on average just under 5 per cent. of their costs, which puts even greater pressure on individuals to raise funds.
As hon. Members have said, and as was highlighted in the report of the Health Committee, of which I was a member, there is no uniform consistency in the quality of palliative care. More has to be done to bring that up to a universal high standard. The National Institute for Health and Clinical Excellence should look into and further encourage the development of standards in that area of both health and social care. I fully support the roll-out of the gold standard framework for palliative care, but I should like it to move on at a quicker pace if that is feasible and sensible. I also strongly support greater interaction between the NHS, social services and the voluntary and charitable sector to provide a seamless service.
I should like to draw to hon. Members' attention a pilot scheme known as the Lincolnshire project, which is being run for a three-year period by Marie Curie Cancer Care as part of its delivering choice programme. All the statistics show that the vast majority of people, given the choice, would prefer to die at home, but as we have heard, only about 25 per cent. achieve that. More has to be done to provide schemes with full back-up services to help support family and carers in giving people the dignity to die in the familiar secure surroundings of their own homes if that is their wish.
Although it is only part of the way through its three years, the Marie Curie pilot scheme has concentrated on the best possible palliative care, equality of access for all, appropriate support, and a choice of care and assistance. The results so far show that it is an encouraging, positive and successful project, which has been able to ensure that, judging by the national figures elsewhere, the needs and the wishes of individuals have been met far more than happens outside the project.
We have a lot to learn from that project. We must learn those lessons and confront our own individual demons on this deeply sensitive and personal subject.
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We must also break down the barriers of the dread and the fear of confronting the issue, thereby becoming more open and more able to work together to ensure that palliative care, and the care of all those who are involved in the vital back-up and support for those who are dying, reaches the highest standards that we would expect for our constituents' families and everyone else in our society.
10.49 am
The Minister of State, Department of Health (Ms Rosie Winterton) : I, too, thank my right hon. Friend the Member for Birkenhead (Mr. Field) for giving us the opportunity to debate this profoundly important issue. I also offer him my condolences on the death of his mother. This has been an interesting and thoughtful debate. As the hon. Member for West Chelmsford (Mr. Burns) said, it has been a mixture of the personal and the practical.
My right hon. Friend began the debate by saying that most people negotiate dying alone, and that that has been the traditional approach. He and the hon. Member for Meriden (Mrs. Spelman) referred to the work of James Woodward and to the idea that ours is a death-denying culture. I do not know whether this is the experience of other right hon. and hon. Members, but that made me think that as Members of Parliament, we write letters of condolence quite often—perhaps more than most people—and when I write to someone about the death of their mother, father or husband, my pen always pauses after the words, "I'm so sorry to hear . . . ". The problem is whether to say that someone has "died" or has "passed away", or that the person to whom we are writing has "lost" a relative. Part of what my right hon. Friend was saying is that we have an inability to find different words. I do not know whether that is to do with British embarrassment, but there is something that makes it difficult for us to express ourselves when confronting death, because we are conscious of the other person's reaction.
We have talked about the roles of the state, the individual and the community, including friends and family. The debate also touches on the many developments that have taken place in the medical profession. Those developments mean that we can, I hope, provide better care nowadays for people who are dying, but they also raise the issues touched on by the hon. Member for Oxford, West and Abingdon (Dr. Harris) and my hon. Friend the Member for Lewisham, Deptford (Joan Ruddock). Those issues were raised during consideration of the Mental Capacity Bill, and will obviously be raised during consideration of Lord Joffe's Bill. They often touch on deep debates, and lead to deep debates in Parliament. Obviously, the Government are, as ever, listening to those debates.
I am glad that this debate has given us the opportunity to pay tribute to Dame Cicely Saunders, whose work has made us a world leader in palliative care. All hon. Members—particularly the hon. Members for
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Worthing, West (Peter Bottomley) and for Romsey (Sandra Gidley)—talked about how we can extend palliative care. This is not an appropriate debate in which to exchange figures for Government spending on palliative care, but there has been increased investment, including in the care provided by hospices. I am sure that many right hon. and hon. Members will say that it is not yet enough—but our manifesto commitment to increase spending on palliative care gives us an opportunity to consider some of the issues that have been raised. I have had responsibility for this matter since the general election; until now, the provision of palliative care has concentrated on cancer services, and I feel strongly about that.
We now have an opportunity to look further at the issue. The hon. Member for Meriden mentioned the work of the Marie Curie Foundation and the hon. Member for West Chelmsford (Mr. Burns) talked about the work going on in Lincolnshire. We have also been looking at the work of the British Heart Foundation.
We need to bring things together and consider what it has been possible to achieve—in the Lincolnshire project, for example, in which the Marie Curie nurses have been co-ordinators of the available care. It has been possible to keep people out of hospital, and, as right hon. and hon. Members said, people increasingly prefer not to die in hospital; they want to die at home with their loved ones. Another example is the Liverpool care pathway, in which it has been possible to identify the support needed in what are likely to be the last two days of someone's life. If we can build on the initiatives that are in place and give support to their carers, people will be able to go home, and die in the place of their choice.
As for out-of-hospital services, there is a big opportunity in primary care consultation. That is when we should consider our commitment to increase palliative care services, and take note of the feedback from such consultation on people's choices and find out how to spread best practice in the available services. I assure my right hon. Friend the Member for Birkenhead that we are considering how to ensure that the gold standard framework is consistent throughout the country. We are also considering how PCT commissioning is done, because sometimes it would be better for one PCT in a group to take the lead.
We are also examining the different aspects of palliative care, which the hon. Member for Meriden mentioned. The approach if someone has heart disease or heart failure is slightly different from that taken if the patient has Alzheimer's disease, for example. We should ask what exactly we expect from palliative care services so that we can extend the range, rather than seeming to concentrate only on cancer.
I congratulate my right hon. Friend on raising this extremely important issue. The debate has been fascinating and some vital matters have been raised for the future. I hope I have been able to reassure hon. Members that we are giving the matter our attention, especially at the moment. We will be making proposals shortly.
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