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Dying Well Strategy

Volume 487: debated on Tuesday 27 January 2009

Through you, Mr. Gale, may I thank Mr. Speaker for choosing today’s debate? I am particularly pleased to see my hon. Friend the Member for Meriden (Mrs. Spelman), who I know wishes to catch your eye.

It is a particular pleasure to open this debate, because I come to praise the Government. That may not last all day, with the Welfare Reform Bill to be debated in the main Chamber later, but certainly in relation to the dying well strategy, my praise is without limits for the way in which the Government have not only raised the issue and tried to give it a public profile, but begun a conversation with those of us in the wider community who have a particular interest in it. Full marks to the Government there and full marks to them for holding the line against those who believe that an appropriate way for people to end their lives is to meet up with some form of death squad. The Government have resisted those easy, beguiling solutions, which again is cause for praise. It is also a pleasure to see the Minister of State, Department of Health, my hon. Friend the Member for Corby (Phil Hope), who has, over a long period, taken an interest in the issue and approaches it with the sensitivity that it deserves. Today, I come to praise Caesar, rather than to undertake any other activity.

The initiative that the Government are attempting to build on is clearly strengthened in Parliament by the fact that we have the all-party dying well group. That group is led admirably by Lady Finlay and my hon. Friend the Member for Heywood and Middleton (Jim Dobbin). My interest in the issue and in initiating the dying well group, along with my colleagues, was prompted by the death of my mother just after the last general election. As the Government have said on a number of occasions, this is not a topic that we normally talk about, so death steals up unexpectedly and takes us unawares. What happened with my mother reinforced to me a number of lessons, which I want to lay out for the Minister’s consideration because they have wider significance.

My mother was blessed for the last five years of her life in that she was looked after by the Little Sisters of the Poor. There are only two establishments that I have ever attended in which I would be happy to die; most of the others fill me with foreboding. The Little Sisters of the Poor is one of those establishments and I would consider myself fortunate if, at the end of my days, I were able to gain admittance to it.

However, in the last week of her life, my mother was in hospital and was treated there by a doctor of considerable skills. He diagnosed that the drugs that she had been on for four years were ones that were meant for four weeks and that they had solidified her lungs, hence the difficulty in combating the lung disease that finally killed her. However, that doctor, who, just by listening to my mother’s chest, began an analysis that led to an understanding of the cause of that death, was totally unprepared to allow her to die in the way that she wished. Indeed, when I told the doctor that my mother wanted to go home to the Little Sisters, he said, “You can’t move her. She’s dying.” I said, “But she’d be really happy to die at home” and he said, “No, no. She’d die on the way home.” I said, “Don’t you realise how happy she would be even to die on the way home? That, to her, would be a success, even though you regard it as a failure.” He said, “No, to move her out of her bed risks her death.” I said, “But why can’t we just borrow your bed. As we can get on to the moon, surely there are ambulances we could hire that could take her and the bed back to the Little Sisters. Maybe she would die in the ambulance, but as I say, that would be an enormous success.” I was asked, “What written agreement do you have with her on how she wishes to end her days?” I said, “We have discussed the matter with the Little Sisters, and they know perfectly well what my mother wishes.” He said, “But it’s not written down?” I said, “No, it is not written down.” Of course, he was worried that if things turned out as we all knew they would, legal action could be taken.

On one of their regular visits, some of the nuns from Little Sisters spoke to the doctor about allowing my mother to return home. He asked whether they knew about people dying and whether they would be prepared for it. The nuns told him that they specialised in helping people come to the end of their lives successfully and happily and that, to them, dying was part of living well. That doctor, so talented, did not know about the Little Sisters, an organisation that is brilliant in looking after people towards the end of their days. That suggests that the Government have set themselves a gigantic job in trying to change not only the attitudes of lay people, as death takes us by the hand, but of those who are professionally trained to help us in the last stages of life.

The figures speak for themselves. Most wish to die at home; but most die in hospital. To have your last conversation—you have to have that last conversation—in a public ward in a well-run hospital and in front of other people, some of whom are thoughtlessly watching their televisions, is not good for the person who is dying nor for those with them. My mother was in a four-bed ward. The old lady opposite her, who knew the score, took off her hearing aid so that she could not hear what we were saying. I am sorry to say that the other two, the younger members of that establishment, did not have those good manners or that sensitivity.

I wish to put four questions to the Minister. First, what steps are the Government taking to try to give effect to people’s wish to die where they want? Secondly, I again ask the Government to share their ideas on the next steps in having a conversation not only with the professionals but with us lay people, who also will die at some stage? Just as the Victorians specialised in talking about death but would not talk about all sorts of other phobias, so we have rid ourselves of the other phobias but find it difficult to talk about dying. How do the Government hope to break through that barrier?

Thirdly, given that in important areas the Government sometimes ring-fence funds, what plans do they have in this respect? I do not want to develop that line, because I know that if my hon. Friend the Member for Meriden is able to catch your eye, Mr. Gale, she will want to say more about that. Fourthly and lastly, the Government, like no previous Government, attach considerable importance to this part of our lives. My hon. Friend has a private Member’s Bill going through the House. To what extent might the Government give protection and fair passage to that Bill, so that it gets on to the statute book?

I end as I began, by praising the Government. When the record of our Administration is written up, I fear that it will not be the huge increases in public expenditure and the fantastic targets that the Government have set that will occupy the history books: I think it will be those changes that begin significantly to change the quality of our lives and the culture in which we live. It is those areas that cost the taxpayer nothing but bring a huge amount of happiness and encourage the verities to which most of us subscribe and which increase happiness and faithfulness—I think of the Government’s reform of civil partnerships—that will merit considerable note in the history books. I also believe that the Government have tried to break through the nation’s phobia—the fear of talking about last things—thus ensuring that our last wishes can be given better effect.

I am glad to have had the opportunity to open the debate, and I am grateful to Mr. Speaker for allowing it. I know that other hon. Members wish to contribute and, having spoken for 10 minutes, as I said I would, I shall now sit down.

In the same vein, I praise my right hon. Friend Member for Birkenhead (Mr. Field) for the way he has championed this cause and for articulating both the needs of people at the latter stages of their lives and the needs of their relatives. I thank him for calling for this debate, thereby making it possible for me to contribute to it.

I, too, care passionately about this subject, not least because both my parents were unable to die at home, although they wished to do so, and because, in my constituency, there is a centre for the study of ageing and spirituality, which is led by the Reverend James Woodward, who spoke to us only last night in another place about what more could be done to improve the quality of the end of people’s lives. I share my right hon. Friend’s view that, if only we did more to improve the quality of life at end of life and to make people’s ending better for them, they would be less afraid and less likely to resort to ending their lives prematurely.

As my right hon. Friend said, there is a stark contrast between the 75 per cent. of people who say that they would like to die at home and the 25 per cent. of people who manage to do so. We as legislators have something to address here in respect of an aspiration that is completely unmet. However, this issue is even more important than that. As a Member of Parliament—I am sure that you experience the same thing, Mr. Gale—I have noticed the number of times that relatives have come to my surgery burdened with a sense of guilt and grief about not being able to provide the best end for a loved one, because all their efforts to bring a loved one home or to make them more comfortable in dignified surroundings were thwarted. That is what has motivated me so strongly.

We hear also from professionals working in this area how difficult it is for them to help to meet the wishes of the person who is dying and the wishes of their relatives. One professional nurse relayed how she had to make 10 or 12 phone calls a day over a prolonged period to ensure that her mother did not go into accident and emergency but went instead into a nursing home with a visiting palliative care nurse. I am sure that plenty of people who read the report of this debate will be able to relate to the difficulty of trying to secure for people what they really want.

It is difficult for the terminally ill patient to find out what their choices really are. If they are not fully informed and given all the information available, almost by default they find themselves swept into the system and swept into a hospital bed, which, often, they are unable to get out of to go back to where they would like to die or into palliative care, which has the specialist provision that they need.

It is vital that palliative care teams are fully integrated into hospitals, so that at the point of decision, when a terminal prognosis has been gently and clearly given to the patient, they can be presented with the choice of dying elsewhere—in a hospice, for example—or being able to go home. It would be no good asking a patient if they wanted to go into a hospice when it had not been made clear to them that they had only weeks to live. As my right hon. Friend says, we are, as a society, for whatever reason, not good at talking about such matters to the people who really need to know. I ask the Minister, what could the Government do to facilitate that?

One reason why people do not wish to talk about death is that it raises huge existential questions, but we would help those facing their end if we shared their options with them and helped them to plan their last days. I, too, am grateful to Lady Finlay for helping me to understand better the needs of terminally ill patients through her own professional background. She was present at the talk given last night by Reverend James Woodward. At that talk, we heard from Lady Neuberger, who is also well-informed on the subject. She pointed out the stark contrast between this country, where our default setting is to put people in hospital beds and expect them to remain there until they die, and the Netherlands, which interestingly has gone further down the road to euthanasia, but in some respects has better end-of-life provision. We need to address the culture surrounding someone’s last needs and consider how to enable them to continue to accomplish tasks, until their dying day and hour, that confer on them a sense of human autonomy, which we do not relinquish until our last.

People are very afraid of the process of dying when faced with limited choices and forced to remain in a hospital bed where there is little that anyone can do for them. I tend to understand that. I encourage the Minister to address the question of what more we can do to enable people in their last days to lead a normal life. I am concerned, at this economic juncture, about the position of our hospices, which on average receive only 30 per cent. of their funding from statutory sources. Sue Ryder Care estimates that it is subsiding primary care trusts by about £6 million a year due to the shortfall in funding. In this recession, there is a genuine threat to hospices that depend so much on charitable funding.

Hospices and the Government have explored the possibility of a tariff negotiated with the NHS, so that a patient expressing a wish to die at home or in a hospice could bring with them the necessary funding from the acute setting. That would help many hospices to survive—hospices on which we depend, in partnership between the third sector and the state, for the provision of palliative care. The Secretary of State announced last week an increase in patient rights. Will that extend to the rights of terminally ill patients? Does the Minister see that as a means to secure the funding, so that the money could follow the patient back to a hospice or into the home, where they could end their days?

As a result of the out-of-hours contract with general practitioners, some terminally ill patients are less sure of being seen out of hours by the GP attending to their needs into the last stages of their illness. In light of last week’s announcement, have the Government any thoughts about helping to ensure that a GP who, over time, has built a relationship of trust with a terminally ill patient may be with them at the end? Good 24-hour nursing provision, supplemented by organisations such as Marie Curie Cancer Care and Macmillan Cancer Relief, and the comfort of the familiar face of the family doctor would help to improve people’s experience of their last days.

As the Minister will know, the gold standards framework is aimed at improving the standards of end-of-life care. Although it has come into being as an example of best practice, there are concerns that those in palliative care feel that its provision is patchy. What plans do the Government have to ensure that the framework is not patchy, but more consistent, and something on which everyone in the country can rely to ensure that our experience of palliative care at the end of our lives is to that standard?

To conclude, the distribution of specialist palliative care across the country needs to be fair and even. There are pockets of good provision and pockets of weaker provision. I shall endeavour to address more of that issue when I introduce my private Member’s Bill. However, I am grateful to my right hon. Friend for initiating the debate, and I feel that we have a chance today to ask the Government some of the key questions on which so many people—perhaps even us, one day—will depend.

I congratulate my right hon. Friend the Member for Birkenhead (Mr. Field) on securing the debate, and thank him and the hon. Member for Meriden (Mrs. Spelman) for their remarks. Both spoke of their personal experiences. As Members of Parliament we are not only the representatives of our constituents; we also bring our personal experience to such debates. I believe that this is the first time we have had a debate on the end-of-life care strategy. In a way, we have even more reason to thank my right hon. Friend for enabling the debate to take place: because end-of-life care affects us in the way that has been explained, it is not debated very widely in the community, as he said. The all-party group on dying well, which he has mentioned, is part of the process of encouraging that wider debate.

Some people end their lives with dignity and respect, with family and friends around them and in comfortable safe surroundings that they have chosen to be in. However, I think that my right hon. Friend and the hon. Lady are right to suggest that many people do not, and that provision of such experiences is at best patchy. That is why we published the end-of-life care strategy last July. It sets a clear direction for the future of adult services in that respect and builds on previous work, not least the NHS cancer plan of 2000, in which resources were allocated. However, there is clearly more to do, and we need wider public debate. In a way, we are starting that today.

As my right hon. Friend and the hon. Lady have said, we need to get not only the public, but health and social care professionals, to engage with death and dying and to understand the content of the strategy, as well as the philosophy and principles behind it, and the practical action involved. Critically, it is right to focus on choice and to suggest that people’s preferences and needs for care are not fully elicited from them at an appropriate time, and are not fully planned or revised as those individuals experience the end of their life.

We need to be a lot better at ensuring that such planning becomes the norm and not the exception. The aim of the strategy is to raise the profile of the concepts—the idea of choice in end-of-life care and what the quality in question would look and feel like. Possibly it should go further and look at changing societal attitudes towards death and dying. Most people do not want to think or talk about death or engage with it. That is part of the problem, and why there is a lack of choice and a lack of the experiences that we would like for everyone.

An initiative that we are taking to get the debate going and deal with the point raised by my right hon. Friend is the establishment of a new national coalition of organisations to raise the profile of end-of-life care. It will be led by the National Council for Palliative Care and will develop a national tool to measure public awareness and assess public attitudes to death and dying. The strategy deliberately avoids targets and recommendations, but it gives excellent case studies and clear advice about what works and what represents the best we can provide at the end of someone’s life. It builds on the strategic health authorities’ visions of what end-of-life care should be like, and I am pleased to say that it has been well received by the national health service and by the voluntary and third sectors, which play such an important role in the relevant sphere.

I want to pick up on something that my hon. Friend the Member for Meriden (Mrs. Spelman) said earlier, which I hope the Minister will be able to deal with. If not, perhaps he will write to us. One aspect of having a strategy involves helping the nation to get its mind around this issue, but death sometimes trips us up quickly and unexpectedly. My hon. Friend’s proposal is really an extension of what the Secretary of State was saying last week. If the organisations that would help us to die at home knew that the bills were going to be paid at some stage, it would ease our transfer at that vital stage of our lives.

I think my right hon. Friend is referring to last week’s announcement that we are to pilot personal health budgets, which we already have within social care, to see whether that principle can be applied to the health service. We will announce those pilots shortly, and they will be flexible enough to encompass a range of services. I cannot pre-announce something that is coming up shortly, so he should listen out for that announcement. There might be opportunities in those pilots to explore this area into the future.

I agree with my right hon. Friend and the hon. Lady about the importance of choice. Personal health budgets might work as one approach to choice, but the whole system should respond to the need for choice. Care plans are a key feature of the strategy and a key part of good practice. Individuals produce, discuss and write care plans, which are then available as they enter their end-of-life period. The figures that the hon. Lady has given on what the public want and what is happening in practice are absolutely right. That is because we have not yet engaged many people in writing care plans. If that process were universal, those figures would change dramatically.

Having a care plan is a critical part of recording a person’s preferences, so that those who support and care for them during their end of life can refer to it. The plan can be revised, depending on the circumstances, and having one means that that person’s wishes are much more likely to be met. To do that, we need to co-ordinate care across a range of sectors, including health and social care and out-of-hours and emergency care services. We also need a local register and a helpline.

For a care plan to become reality, we need the architecture for co-ordination of those services to be in place. If both of those parts of the service are created and delivered consistently across the country—the hon. Lady made a good point about patchiness—many more people will get the choices that we want them to have.

We need services to be 24/7 if people want to die at home, and we need rapid response community nursing, which the strategy describes as being part of the answer. Also, multi-agency care must be seamless, with people working together around the needs and choices of the patient. That requires staff to have proper training, not least in communication skills, for end-of-life care.

On implementation, I want to make a couple of points about how these great strategies and this policy will become reality in every part of the country. As my right hon. Friend and other hon. Members will know, we are committed to spending an additional £286 million to promote end-of-life services, through the strategy, in the next two years. He will also know that most cash is sent to PCTs, which commission the services, so money is not ring-fenced in that way because that is the overall policy. However, we have told PCTs that we expect that extra investment to be properly detailed through the resources and applications planning form. That means that we can work with strategic health authorities to understand exactly how that extra money is being translated into investment in end-of-life care services at PCT level.

Many issues have been raised, and I have not been able to address them all. I certainly hope that the gold standards framework, which the hon. Lady mentioned, is something that we want delivered throughout the country. We are putting extra resources in place for that, with capital funding available as well. Some £12 million was in the NHS end-of-life care programme, rolling out key tools such as the gold standards framework and initiatives such as the Liverpool care pathway, with which she will be familiar. We are taking prompt action now to ensure that we deliver the kind of outcomes that we need.