Second Reading

I beg to move, That the Bill be now read a Second time.

Like many other hon. Members, I have been through the experience of losing a much loved relative in the sometimes undignified setting of a hospital ward. So my motivation in proposing this Bill is to secure a better quality of life for the final days of people's natural lives.

The Bill aims to confer on patients a right to choose where to receive end-of-life care. I want to make it clear at the outset that "palliative care" should be understood as palliating all types of advanced, progressive and incurable conditions, and not just cancer. The well respected Birmingham cardiologist, James Beattie, came to see me to impress on me the inadequate nature of the provision for his patients with heart failure. That includes those who have undergone a transplant and those who have chosen not to undergo a transplant, who are often seen as not needing palliative care.

I also pay tribute to the work of Dr. Keri Thomas, a GP who decided to specialise in palliative care through her own experience as a GP and realising that more could be done for her patients. She has been responsible for drawing up the gold standard framework for palliative care, which all mainstream parties now accept as something that should be integral to the health service that we provide. However, the provision of palliative care to that standard is still patchy.

The Bill is necessary for several reasons. First, palliative care provision is likely to affect most people in the country. Secondly, as I have said, the commissioning and provision of end-of-life care services is still patchy.

Palliative care depends heavily on the voluntary sector. It is provided in all settings across all sectors by multi-professional teams. Co-ordinating those teams is crucial, and I believe that it requires this legislative pressure.

Palliative care has been on the parliamentary agenda for a number of years. Hon. Members introduced private Member's Bills on the subject in 2005 and 2006 and Baroness Finlay of Llandaff presented a private Member's Bill in the other place in 2007. Mr. Field has consistently raised the issue of end-of-life care, and although he is unable to be with us today, all hon. Members know how strongly he feels on the subject. He recently articulated those feelings in an Adjournment debate in Westminster Hall, in which he most generously shared part of the very limited time available with me.

My own interest in this subject has been fuelled by the work of the Leveson centre for the study of ageing, spirituality and social policy in my constituency. Dr. James Woodward, who was until recently the director of that research facility, has written thoughtful and original papers on the subject of how we treat those who are nearing death.

Research carried out by the Marie Curie Cancer Care charity shows that the majority of people with a terminal illness want to die at home, yet only one in five achieve that. There were 503,000 deaths in England and Wales in 2006 and 290,000 of those took place in hospital. Those are the most recently available statistics.

Does my hon. Friend recognise that palliative care is not only about the elderly as they approach death, but about children? The work of children's hospices in my area shows just how incredibly important palliative care can be for children nearing death, and it shows how much those hospices can provide to avoid those children being hospitalised at the end of their lives.

I thank my right hon. Friend for that intervention. The untimely death of a younger person or younger member of the family is always difficult for parents who outlive their children and for other members of the family. We all have constituents who have been deeply grateful for the existence of specialised children's hospices and the specialised palliative care that they offer. I am sure that my hon. Friend, too, shares my concern about the security of funding for children's hospices, which I shall come on to later in my speech.

It is stating the obvious to say that we only die once, but it is essential that end-of-life care is provided consistently and to a high standard for all. Although it is very expensive to keep a patient in an acute hospital bed, there is still no adequate lever to enable the funding to follow a patient out of hospital and into the community when they go back home, enter a hospice or return to the care home from which they emanated before their admission to hospital. My Bill aims to ensure that the money follows the patient and is not tied to the bed.

As I am sure is the case for many of my hon. Friends, countless constituents come to my surgeries to tell of the distress caused by inflexible care provision at the end of the life of a loved one. I should explain that the lady whom I am about to mention is content for me raise her case in the House. Very recently, Mrs. Anita Gee of Marston Green came to see me. Her husband, Malcolm, died from a terminal illness and was able to spend his last days at home with his wife. Sadly, the care package that had been promised on his discharge from hospital never arrived, and Mrs. Gee was left to struggle on her own. To make matters worse, she received a bill in the post from the council a short time after her husband's death, charging her for the care that he never received. She has stated:

"It's an extremely vulnerable time in your life. I'm usually on top of things but my brain just stopped. There needs to be something in place so that you don't have to scrabble around making phone calls to ensure your loved one receives the care they need."

That is a poignant reminder to us all of the shortcomings in the present situation. Mrs. Gee's dearest wish is that other families do not have to experience what she did. In raising her case, she hopes that the situation can be improved. I, too, hope that it can be improved not only for my constituents, but for the constituents of all hon. Members.

Surely we are not a country where bureaucracy and pragmatism prosper in the place of flexibility and deep concern for the wishes of individuals. Many terminally ill patients find themselves in a care home setting. Funding of places in care is a vexed issue that can affect the ability of the care home to fulfil the wish of residents to end their days in the place that has become home for them. All too often, through inadequate funding or lack of training, a care home has to get a resident admitted to hospital to ensure that the resident's medical needs are, in their view, better met.

Most residents and their families are unaware that in moving between a care home and a hospital, they make a perilous journey between two Government Departments, whose funding streams are quite different. Many care homes are dependent on local authority funding, which often needs to be topped up by family members to provide a standard of care regarded as acceptable. There is a real crisis in adult social care provision. Costs are increasing at the rate of 6 per cent. per annum, but local authorities receive an average grant increase of 2 per cent. per annum. That needs resolving if care home residents are to secure their wish to receive palliative care in that setting.

The Bill does not extend to Scotland, but the Scottish Commission for the Regulation of Care commissioned a report on the quality of palliative care in care homes, which highlights a number of the issues. Not least of those issues is the fact that 43 per cent. of residents did not have their palliative care needs met. I would be very interested to know the comparable figures for England and Wales; perhaps the Government will make them available. It is good practice for care home managers to discuss with a resident and their family preferences for end-of-life care before the crisis, but it can then be a great disappointment to the resident and the family if expectations so raised cannot be met.

I am not talking about unachievable ideals when I state that every patient should be able to choose where to receive end-of-life care. Marie Curie Cancer Care had a "delivering choice" programme, which ran from September 2004 to September 2008 in Lincolnshire. That important pilot provided a package of solutions to increase the number of people who achieve their wish not to die in an acute care setting. A palliative care co-ordination centre, discharge community link nurses and a community-based rapid response team were set up. There was also training for health care professionals in end-of-life care, and greater support for carers to combat the main problems in the system that keep patients in hospital. A King's Fund report concluded that

"the project in Lincolnshire has significantly increased the proportion of deaths at home and decreased the proportion of deaths in hospital, while keeping the overall combined cost of acute and community care stable for patients with cancer receiving palliative care in the last eight weeks of life."

During this pilot, the percentage of people who achieved their wish to die at home rose from 19 per cent. in 2005-06 to 42 per cent. in 2006-07, so the dream of making every death dignified is achievable, if the money follows the patient to where they want to receive palliative care. Many of those involved in palliative care have pointed out that the fact that Jade Goody managed to achieve the death at home that she wanted has raised awareness that that is achievable.

As laid out in clause 3, "palliative care" means

"care given with the intention of improving the quality of life of persons with a terminal illness", with an awareness not only of a person's physical needs, but of their psychological, social and spiritual needs. Palliative care is most commonly provided in hospices. There are 153 charitable hospices in England, six of which are run by Marie Curie and six by Sue Ryder Care. In addition, there are 36 NHS hospices.

As hospices are generally the place where palliative care is provided at a consistently high standard, I want to discuss their survival in the current economic climate. In a survey carried out by Help the Hospices in January 2009, only 2 per cent. of responding hospices said that they were not worried about the financial situation.

Another constituent of mine, Mr. William Marjurey, wrote to me last month to express his concern that the Acorns children's hospice in Birmingham is experiencing severe financial difficulties. That hospice published a report in January this year entitled, "Surviving the Recession", to combat the very real threat of the financial crisis. On average, hospices receive only 30 per cent. of their funding from statutory sources. That makes the huge drop in cash donations—down 49 per cent.—a very worrying trend. A further 16 per cent. of hospices said that they were considering closing or reducing their services.

If my Bill were enacted and the money could genuinely follow the patient from an acute care setting back to a hospice where they chose to spend their final days, this would undoubtedly help our hospices through the present difficult economic climate. Such worrying figures highlight the lack of adequate Government funding for the hospice sector. The end-of-life care strategy, which I welcome, promised that

"any new services which are agreed as part of a local strategy should be fully funded from statutory sources", but it did not address the continued underfunding of current services.

Sue Ryder Care, a leading third sector provider of specialist palliative care and long-term neurological care in the UK, raises funds voluntarily to provide extra services, such as a bereavement centre, and it would ask health care commissioners to pay the true cost of the care that they choose to purchase. I was dismayed to learn, for example, that my local Marie Curie hospice, Warren Pearl, is receiving bills, which it simply cannot meet, for MRI scans for patients in its care from the local NHS trust.

The current palliative care force is equivalent to just 5,233 full-time nurses and 208 doctors. With the annual number of deaths forecast to rise from 503,000 in 2006 to 586,000 by 2030, this number of trained professionals is clearly not adequate to meet the need. In the west midlands, we have struggled, even at the level of specialist provision, to find a pain consultant for a population the size of Denmark's. Dr. Mark Taubert, a palliative care registrar in south Wales, who has undertaken research in this area, has informed me that some out-of-hours GPs fear palliative care issues and often feel out of their depth.

Without adequate training for all health care professionals, access to palliative care for all terminally ill patients will simply never be possible. Across-the-board training is required for the medical profession, professions allied to medicine and those involved in social care, because no one can be sure when they will be the one who will be accountable for a dying patient. The wrong words can stick like a cracked record in the minds of grieving relatives for years afterwards, not to speak of the hurt that the patient may take to the grave. That situation can be avoided by giving adequate end-of-life-care training across the whole spectrum of those helping someone through to the last days of their life.

It is training in not only delivering palliative care but talking about death that is required. This is a subject on which I know that the right hon. Member for Birkenhead feels strongly. Patients can make an informed choice only if they are themselves informed clearly and sensitively about their prognosis. Death is an area that our death-defying society would happily choose to ignore or brush under the carpet. It has become clinical and awkward to discuss, which does not help to achieve the aim of enabling every person to choose where they die. I welcome the General Medical Council's plan to publish guidance entitled, "End of Life treatment and care: Good practice in decision-making", consultation on which is under way.

The opening sentence of the NHS constitution, which is referred to in the new Health Bill, states:

"The NHS is there to improve our health and well-being...and when we cannot fully recover, to stay as well as we can to the end of our lives."

A shift in our thinking about death and care of the dying is required. The social, health and family affairs committee of the Council of Europe published a report in November 2008 on palliative care, which states that the protection of fundamental rights is a Government task and should not be left to the pushing and pulling of pressure group politics.

I hope that in introducing the Bill discussion will not be unduly guided away from the matter in hand towards the idea held by some that it is our right to choose not only where to receive palliative care but when life should be ended. I want the House to concentrate on how to provide dignified end-of-life care, so that people do not feel that they have to resort to ending their life prematurely. I firmly commend the palliative care charities, such as Macmillan, Marie Curie and Sue Ryder Care, and the many independent hospices that are working through the recession to deliver an invaluable service to their community. I commend the Bill to the House.

I congratulate Mrs. Spelman on bringing forward a Bill on this important and entirely relevant topic. I support passionately palliative care and, like her, I have profound doubts about euthanasia. To some extent, successful palliative care gets the Government and the nation off the hook in the euthanasia debate, because one of the strongest arguments for euthanasia is the avoidance of unbearable and unnecessary pain, and without good palliative care models that simply is not possible. Where there are good models, it may be possible.

The reality is that we all die and most of us will die undergoing some sort of medical treatment, and there is normally a ready equation of medical treatment with cure. Doctors and hospitals are people and institutions that fix us; that is how we usually look at the matter. However, it is a sad truth that most people die in hospital and it is a truth that, by and large, hospitals seek to avoid and to disguise. They avoid acknowledging that people die, and people die on wards opposite people who may well get better.

I spent a short period as a hospital porter, and one chore that I had to do from time to time was to remove people who had died from the wards. It was always interesting to see how they were moved closer and closer to the door and then to the side wards, and that other patients were told that they had been moved somewhere else. It was never actually explained that they had been moved on to the mortuary, because that obviously had a bad effect on the morale of other patients, if nothing else.

Hospices, however, are predicated on the opposite assumption—that people die and can, in theory, die well. When someone is in imminent prospect of dying, the Bill tries to give them a right to quality palliative care. That is what the Bill is fundamentally about, and, having read it, I presume that the model is to provide state funding for it and to make available a type of care that is appropriate to, or in line with, the patient's will. That, as such, is completely admirable, and I do not have a problem with the objective. There are some problems, however, which I shall highlight, and in summing up perhaps the hon. Member for Meriden can address my concerns.

First, candidates for palliative care are not always as easily identifiable as we might think. Terminal cancer patients with metastases, secondaries and so on are fairly obvious candidates, but what about the elderly and the infirm? On a hospital ward, there can be genuine differences between relatives, medics and individuals as to whether they are on a short, irreversible journey to death or have a faint prospect of recovery. There is often an unwillingness on either side—relatives and medics—to recognise that there is a case for palliative care.

Secondly, it is not clear whether the Bill has effectively dealt with, thought through or addressed another question: who would make the choice when, as in some cases, the patient is barely conscious and incapable of making the choice themselves? Does their right transfer to relatives and, if so, under what circumstances? There are, therefore, two grey areas: who qualifies; and who chooses in cases when choice is not a realistic concept that can be applied to the condition of an individual patient who may be slipping in and out of a coma—or in and out of consciousness, anyway.

I am surprised to raise this, my third problem. What I ordinarily understand by palliative care is making a patient comfortable, enabling autonomy so that they can arrange their affairs without being distracted by pain, and alleviating pain and depression. Those are services that carers and medics are used to delivering and can deliver, but perhaps do not deliver as well as they should at times; none the less, such services are within their capacity.

Included in the Bill's definition of palliative care, however, is spiritual help, and I have two problems with that. First, from the left field, I should hope that spiritual help is more than, and possibly different from, palliative care, because they are not the same thing. Secondly, there may be some doubt about the capacity of the national health service, a local authority or whoever to fund or provide spiritual help, enlightenment and so on, and the desirability of their doing so. I totally accept the model of the hospital chaplain, but the hon. Lady seeks to put in place much broader arrangements, so I simply question whether the state would be prepared to fund every action, counsel and pre-funerary right of a person's religion in all circumstances—whether it might not create difficulties and some doubt about whether that was appropriate for a public body.

I say that as someone who believes that such activity is an integral part of a good death, who sympathises with the laudable emphasis on psychological, social and spiritual help and who applauds the Bill's objective. The Bill is about the good death—about making death as good as it can be—and ascribing the state a role in achieving it. That is entirely laudable, but the issue for me is whether it is within the state's competence.

I should begin by saying that my brief appearance in the Chamber without a tie was not an expression of extreme Cameroonian modernism, but merely an oversight on my part; I do not have a mirror in my office. I hope that it will be recognised that I am now perfectly attired.

This Bill, brought forward by my hon. Friend Mrs. Spelman, is enormously valuable and I want to speak about three of its elements. I take entirely into account the thoughtful observations of Dr. Pugh about some of the practical issues, but my first point is that there are severe strains in the current palliative care system. I mentioned the case of children's hospices in my intervention, as did my hon. Friend in her speech; it does not conform to the general pattern for hospices, which receive, as my hon. Friend said, about 30 per cent. of their support from the state. In many instances, very little support from the taxpayer is available to children's hospices at all.

I have associated in my constituency with two children's hospices that have had particular problems in recent months. That is due partly to the peculiar circumstances of the Icelandic banking crisis and partly to the decline in giving that has inevitably resulted from the recession. The lack of serious taxpayer funding is a significant problem under such circumstances, and my hon. Friend's Bill would do much to help address that practical issue. The two children's hospices that I mentioned serve my constituents, so I have looked into the issue at some length. I am not persuaded that, when all the sums are done, there will be a saving to the taxpayer as a result of the current arrangements. On the contrary, I suspect that the taxpayer would, in a hidden way, meet considerable additional costs if the provision from children's hospices were to decline as a result of the current problems.

Although she is now at the Department of Health, the Minister has been a distinguished occupant of a Treasury post; what I have mentioned may be a case of immediate Treasury control causing additional fiscal problems at a time when the nation certainly cannot afford such problems. Discussion of the Bill offers fertile ground for combining a prevention of decline in quality of life with, unusually, savings in public expenditure. I hope that the Minister can use her good offices and her past record in the Treasury to try to disentangle all that, and that as a result the Bill ends up benefiting both the taxpayer and those who most need the services.

My second point is wider and more human. Both my hon. Friend the Member for Meriden and the hon. Member for Southport mentioned the phrases "a good death" and "dying well". What my hon. Friend said about the importance of the moment of death and the approach to death is enormously welcome. The hon. Gentleman mentioned that our natural attitude to medicine, hospitals and so on is that they are "fix you" places, and that was also welcome. There is a significant and large-scale issue, of which that concern is one part. We have all had the experience of relations and others close to us dying at one time or another. Because of my father's condition, I also have experience of the incredible ability of our national health service to intervene and sustain life in a way that would have been impossible in previous eras.

However, as a result of those various experiences, I also have, unfortunately, a pretty acute sense that there is a great gulf. On the one side, there is our current concentration on the ability to fix things, even to the extent of restoring life when it would otherwise have disappeared; that is something enormously impressive, to which huge resources are devoted and in which the techniques employed are now staggeringly effective. On the other side, there is the extreme paucity of provision for quality of life once someone has been rescued from near death, or once someone is kept in being for a period leading to their death.

It would be wrong to say that keeping someone alive lacks all value if the quality of life is less; there is a value in life. However, the truth is that if one imagines oneself in the position of the person involved, mere life is not enough. There is an increasing problem of an imbalance between our attention to the question of keeping people alive, and our relative lack of attention to the question of the quality of life they enjoy while alive. At no time is that question more acute than as people approach death. It is therefore enormously welcome that we should focus not only on the Bill's technical characteristics, but on the points it raises about the need for a reorientation of our concerns away from the invasive and remarkable ways in which we can keep people alive and towards the question of how we can, as a nation, ensure that people have a quality of life, even right to the end, that is in accord with what we would wish for ourselves and for those we love and care for.

The third and final point that I want to make is this. Having quite frequently visited friends, relations and constituents in hospices, and having also, as we all have, seen people approaching the end of their lives in hospitals, I have noticed a remarkable contrast. Of course, the level of care in hospitals is frequently admirable, as is the level of medical attention, but there is something about the way in which the patients feel and are treated in a hospice that is peculiarly suited to this very strange time of life—perhaps, in some ways, the most important time of life, as one approaches the end. There is nothing that I fear, particularly, about being dead, but we all fear the process of coming to death.

I accept the points made by the Liberal Democrat spokesman about the difficulty of the state having a role in spiritual and psychological counselling. Nevertheless, my hon. Friend the Member for Meriden is surely right that there is, as one approaches the end of life, a need for something that goes way beyond what is usually perceived as medical support. It is almost inevitable that hospitals will focus largely on medical activity. That is not a failing of our hospitals; I cannot see what else a hospital would ever do. We demand of our hospitals that they are brilliantly good at fixing people—we hope, at least, that they will be good at doing it—and, by and large, they are. However, we cannot ask them at the same time to put the amount and quality of effort that a hospice can afford to put into the kind of support that—even if we do not describe it as spiritual, which is perhaps quite a long way down the track—is psychological. A hospice can provide the degree of psychological support that can make an enormous difference to the quality of those last days and weeks of a person's life. It is a good idea to enable people to transfer from a setting in which it is intrinsically difficult to do that to one in which it is intrinsically easier to do so. That is a large part of the gist of my hon. Friend's Bill, and I strongly support it.

I begin by warmly congratulating my hon. Friend Mrs. Spelman on selecting this subject for her private Member's Bill. She made a strong and lucid case for prioritising the needs of patients receiving palliative care. I am sure that the House will agree that her compassion shone through her wonderful speech, which covered the ground comprehensively and cogently, particularly with regard to asserting the right of those undergoing end-of-life care to choose the setting in which they are treated.

I am sure that all hon. Members present, and those who will read our proceedings, will agree with my hon. Friend that each individual deserves to die with dignity, in the place where they feel most at rest and comforted, be it at home, in a hospice or in a hospital. I echo the tributes that other hon. Members paid to the hospice movement, and in particular I pay tribute to St. Luke's hospice in Winsford in my constituency. It is one of the many hospices around the country working tirelessly to provide a place of refuge for people who are undergoing the ordeal of terminal or life-threatening illnesses and conditions, and for their families, friends and other loved ones. Its cause, and that of every hospice, is close to my heart. Through the work of my wife as a nurse at St. Luke's I have come to know a great deal about the tremendous commitment and dedication and the special skill, which my right hon. Friend Mr. Letwin mentioned, of those who work in hospices and all the ancillary workers. It is a wonderful form of work.

As my right hon. Friend said, we need to bear in mind the fact that there is something extraordinarily special about those who engage themselves with people coming towards the end of life. It is care in all its contexts and meanings. It is care for individuals, their families and communities, and it is available in all settings and geographies and in relation to all illnesses and conditions. There is no greater compass of the word "care" than applies to palliative care and, above all, care as people approach the end of their lives. It ensures that pain control, comfort, confidence and good counsel are available.

The issues raised by the Bill prompt the question of what it means to die well. In fact, Dr. Pugh, who spoke for the Liberal Democrats, used the term "a good death". I dare say that if we track back only a few years, we as politicians would have been extremely chary about using that sort of phrase in the public domain. People recoiled from that slightly. It is a remarkable sign of how much we have come to understand the issues that surround this important matter that we are able to use a term such as "a good death" to help inform and shape the approach that we as policy makers, and society itself, take towards the extraordinarily important issue of giving people confidence through their lives that there is a process by which they can aim to have a good death and die well.

If we are to have a choice about where we receive care at the end of our lives, the Government, the NHS and social care services must seek to understand the preferred circumstances in which an individual wants his or her life to come to an end. For most of us, dying well would entail spending our final moments free of pain, surrounded by loved ones in an environment of our choosing. As my hon. Friend the Member for Meriden asserted, the majority of us do not wish to die in hospital, yet there are those who would prefer to be cared for there than place the burden of their care on their family and friends.

I am sure that hon. Members agree that legislation must ensure that the fulfilment of patients' wishes for the end of their lives is not impeded by patchy delivery of palliative care resources and care services. If patients are to be given choice over the location of their palliative care, the palliative care sector must become a priority for the Government. It has remained the NHS's poorer cousin for perhaps too long. The Government shower the work of palliative care services with praise, and I pay tribute to them for that, yet we are all aware that it has been a problem for the Department of Health and other organs of government to match that expression with the action that is required to put in place the policies and other actions that will ensure that that work is adopted as part of mainstream thinking in care services. It is about not just putting in resources but removing barriers both cultural and active.

The Government's long-awaited end-of-life care strategy goes some way towards acknowledging that the palliative care agenda must be prioritised in the coming years. I welcome that. Prior to the strategy, however, the Government had, to some degree, sidelined—although that is probably too strong a word in this context—palliative care, dismissing it as a lower priority sector. Indeed, the strategy admits that, describing palliative care's profile as "relatively low" in the NHS and social services.

Hon. Members will be aware that, despite the strategy, palliative care still lacks its own payment-by-results tariff and relies on charitable donations to provide many of its services to patients. The Treasury, under the reign of the Prime Minister when he was Chancellor of the Exchequer, promised that by April 2006 charities would not subsidise the taxpayer. That pledge was made in the 2002 cross-cutting review of the role of the voluntary and community sector in service delivery. Since 2004, however, Government spending on hospices has actually fallen by 3 per cent. Figures from Help the Hospices show that today only 31 per cent. of hospice expenditure is Government funded, compared with 34 per cent. in 2004.

indicated dissent.

I see the Minister is nodding her head negatively.

The hon. Gentleman made a point but then gave different evidence. He said that Government investment in hospices had fallen. It has not: it has increased. The hospice movement, including St. Peter's in Bristol, with which I am very closely connected, has already made it clear to me—and, I am sure, to him—that it wants to be able to maintain its independence, while also seeing a stream of financial support from the Government, and the Government are delivering that.

I am grateful to the Minister and glad that she took the opportunity to clarify the position. I was quoting the figures from Help the Hospices, as I am sure she is aware, and from the Sue Ryder Care briefing. Her answer might have indicated that there has been an increase in the absolute number, whereas I was focusing on the percentage of expenditure that is Government funded, but perhaps I paused for breath too quickly in the middle of a sentence before I could do so. None the less, the fact that there has been a percentage drop is an important point, even if the Government have clearly put it on the record that there has been an absolute rise.

The National Audit Office has also emphasised the fact that nearly a quarter of PCT contracts with hospices are for one year only. Therefore, not only do the Government have to try to match their rhetoric with results, but we need to be careful that there is no watering down of any commitment to palliative care as each year passes. In order to fulfil the Government's pledge on palliative care, the Department of Health promised in 2004 to provide a tariff for palliative care by 2008-09. That tariff would ensure that palliative care services outside the NHS had their costs met in full by NHS funding. However, five years on and after that intended deadline, there is no sign of the tariff appearing. I hope that the Government will take the opportunity that this private Member's Bill provides to set that pledge right, because it is now both needed and desired.

However, it is not the specifics of palliative care funding that I want to focus on today. Rather, I want to highlight how a collaborative approach to care from health and social services can enable palliative care to exceed the bounds of hospitals and hospices and become rooted in the community. I am grateful to the people at St. Luke's in Winsford for briefing me on how they are trying to move beyond those bounds. The Bill highlights the need for co-operation among NHS bodies, social services and voluntary organisations in the delivery of palliative care. Durable partnerships between those authorities will be instrumental in providing choice for palliative care patients and in opening up more opportunities to be cared for in the home, which is what we need to focus on.

My hon. Friend has frequently drawn our attention to the fact that out of the 75 per cent. of people who die in hospital, 25 per cent. express a wish to die at home. Opinion polls from Marie Curie also suggest that 65 per cent. of the population would like to die at home. The desire for community based end-of-life care is clearly widespread, and if the public's call for more community care were not evidence enough to convince Ministers of the need for action, the stark demographic fact of our ageing population must surely persuade them.

My right hon. Friend the Member for West Dorset talked about children's hospices, particularly those in his constituency. There is an important need for co-operation between social services and health provision in this context. Co-operation between social services and adult health is easier to achieve than similar co-operation with child health provision. Adult social services now come under the remit of the Department of Health, whereas the Department for Children, Schools and Families is responsible for children's social services. Work must be done to ensure that palliative care in the home is an option for children as well as for adults. The Government must ensure that the departmental divisions in responsibility for health and social care do not impede the co-operation between the services. The NHS and social services should investigate ways of working together to identify children in need of home care, and to deliver that care when it is requested and appropriate. I hope that the Government will take the opportunity, either today or shortly, to give us some clarification and hope on that matter.

Turning back to the demographic changes and challenges that we face, the annual United Kingdom death rate is set to rise from 503,000 in 2006 to 586,000 in 2030—an increase of 17 per cent. It is an indisputable fact that demand for palliative care will increase. If health and social care services are to stand a chance of meeting that demand, palliative care services will have no choice but to filter out of hospitals and hospices and to permeate homes and communities. The terms of the Bill raise certain questions. What measures are the Government taking to plan for the emerging needs of our ageing population in regard to palliative care? When will they act? How will they ensure that a patient's wish to be cared for at home can be honoured?

In recent years, I have investigated and championed the treatment of dementia in the NHS and beyond, and I am pleased to see that my hon. Friend Jeremy Wright is with us today. He is the chairman of the all-party parliamentary group on dementia, and has done a tremendous amount of work to raise the profile and understanding of this great demand facing society. Dementia has no known cure, and palliative care comes heavily into play in this context. Figures suggest that a large proportion of the elderly do not access specialist services, and that palliative care is confined largely to those suffering from cancer. Indeed, 95 per cent. of palliative care patients suffer from a cancerous disease, while elderly people with conditions other than cancer account for but a small fraction of service users.

The number of elderly people receiving palliative care would surely increase if services were made more widely available in the community and in the home. Dementia sufferers are rarely treated in hospital for long periods, and their care is often undertaken by relatives and friends. Bringing palliative care to the doorstep of the patient, whether in a care home or a private home, would benefit the patient and greatly aid the relatives and friends devoted to their care. I hope that the Minister will tell us what measures the Government will put in place to ensure that those who are not in a mental position to make an informed choice about their palliative care will not be discriminated against. The hon. Member for Southport touched on that point earlier. I also call on the Government to promote palliative care options to patients diagnosed with dementia, so that palliative care services can become more widely available and are not limited to cancer patients. That underpins the argument put by my hon. Friend the Member for Meriden.

My hon. Friend was right to say that thought must be given to the work force requirements needed to accommodate this approach. She drew our attention to the limited scale of the palliative care work force, which comprises just over 5,000 nurses and 200 doctors nationwide. We need to recognise that these are very specialist professionals; they are trained doctors, nurses, therapists and auxiliaries.

It is important not to confuse this work force with those mentioned in this week's Budget, and the major demand for more people to work in social care generally. Here, we are talking about the specialist qualities and training required to give people palliative care and help them and their families through the process as they move towards the end of life. If the NHS is to offer more choice to patients, the skills to help deliver such care must infiltrate the wider care professions and disciplines. These professionals, along with social workers, will also be key to identifying the individuals in need of palliative care. A closer relationship between the NHS and social services with regard to the palliative care strategy could enable the services to identify individuals who could benefit from palliative care and ascertain their preferred care setting so that services can be commissioned accordingly.

The Government recognise in their end-of-life strategy the desire among patients for a choice of settings in which to receive palliative care, so I hope that they will use this Bill, promoted by my hon. Friend the Member for Meriden, as a vehicle to enable the NHS and social care work forces to be upskilled in order to offer choice across the country. Palliative care should not be sidelined into its own sector or specialism. If access and availability are to increase, it must enter the mainstream of NHS treatments. We offer significant medical and emotional support whenever life begins, so we now need to give careful thought to why we do not attend to the end of life with the same sense of reverence and expertise.

As the Bill asserts, the definition of palliative care constitutes much more than just the supply of medical treatment. The term includes the provision of psychological, social and spiritual health and support. Some patients who value such support may well feel that it is best delivered outside the hospital. Individuals and families who have made use of hospice services often comment on the enhanced pastoral support they are able to receive once they leave the busyness of the hospital setting and can gain the time and space for reflection and rest.

If patients are to be given the option of receiving care at home and if hospice services are to be extended to be part of the community and delivered in homes, neither their pastoral support nor medical treatment should suffer neglect. Home care must not be allowed to become a guise for inaction or cost cutting, whether on the part of the Government or of any other public service organisation. Although delivering palliative care in the home will inevitably take some pressure off hospital beds and staff—a benefit highlighted in the end-of-life care strategy itself—this outcome should be a by-product of a service that is driven by the needs of the patient.

There are three potential areas in which legislating for choice for patients could be abused, all of which my hon. Friend's Bill would safeguard against. First, patients must not be coerced into receiving care at home if they would prefer to be treated in hospital. We do not want to reach a situation in which patients who have elected to be cared for in hospital are made to feel burdensome or undervalued. We must guard against pushing patients down an avenue of care that they are unhappy with; it is that issue of choice that lies at the heart of my hon. Friend's Bill.

Secondly, relatives sharing the care of patients must not be made to feel isolated and unsupported outside hospital. Measures must be instigated to ensure that palliative care in the home or care home meets the same standards as care in the hospital or hospice. Even as I spoke that sentence, it was clear that a great deal of variation is evident to all. We have excellent care in some hospitals, but in others, the care for those approaching the end of life is not well regarded or renowned.

Thirdly, as I observed earlier, choice entails co-operation between the health, social care and voluntary sectors. The need for collaboration between the organisations must not detract from the pressing need for a palliative care tariff. The Government cannot continue to assume that the voluntary sector will come in to fill the services cut or withdrawn. I hope that the Government will again view this Bill as providing a wonderful opportunity to bring forward the tariff that they have promised.

Recently, the rather ill-defined euphemism "local work" has been used to refer to the delivery of end-of-life care for the elderly in the dementia strategy. In using that term, there is a danger that the strategy could seek an absolution from responsibility for any real push for improved dementia services. I therefore hope that the Minister will assure us that the right to choose the location of palliative care will not become ensnared by attempts to avoid being blamed. I do not say that to the Government alone, as there is a broader culture of anxiety and concern about the possibility of being blamed in our public services and society in general. That is driving a lot of policy, which is unhelpful to attempts to take positive steps forward, such as through the measures in my hon. Friend's Bill.

Choice must be accompanied by a clear set of standards and responsibilities. My hon. Friend's Bill rightly accentuates the need for these standards to be put in place for each palliative care setting on offer to patients, including home care. It also makes provision for assigning responsibility for the care of patients in each setting, and it would mandate the Secretary of State to issue guidance on the funding of patient choice, so that palliative care capital could be passed from one palliative care services provider to another, depending on where the patient chooses to be cared for.

I was interested to hear the comments of my right hon. Friend the Member for West Dorset about this area offering the best example of the "spend to save" argument. Given that all of us on the Opposition Benches have to try to get our policies past him on those grounds, that was most encouraging and helpful—and I hope that the Government will have recognised the great force and impact of what he said, and will respond accordingly, not least on children's hospices.

The Bill would ensure that funding followed the patient. It would lessen the financial advantage gained by hospitals whose patients choose home care over hospital care and ensure that, whatever the care setting, the needs of the patient are prioritised.

I had considered referring to the discussions about end of life in recent debates on organ donation and the organ donation taskforce. I will not do so, however, as that has not really cropped up as a matter of debate today, and I will not stray outside our remit. There is a debate to be had, however, about the impact of some of these issues in relation to our recent organ donations debates.

There is no direct mention of the introduction of an NHS payment by results tariff for palliative care in the Bill, but the provisions would, by default, necessitate action by the Government in this area. The introduction of ubiquitous patient choice will require careful budgeting and a tariff that ensures that the palliative care sector can cover the cost of providing care in a number of settings. The Conservative policy paper, "The patient will see you now, doctor", draws a clear link between enabling choice and creating a tariff; the two go hand in hand.

It is time for this Government to cash in on the promises they have made, and to treat the tariff as something that is now required and that can be put in place, rather than as an elusive pot of gold at the end of the rainbow. We want this to be put in place now. I hope the Bill will be viewed by Ministers as an opportunity to change gear from neutral to fast forward, so they can fulfil their palliative care pledges.

On a point of order, Madam Deputy Speaker. On today's Order Paper, the Leader of the House, who is also the Minister for Women and Equality, has given notice of the presentation of her Equality Bill, and that is all well and good. The Bill is not available in the Vote Office until Monday, so Members will not have the opportunity to furnish themselves with an idea of its contents until then. Unfortunately, this morning's The Times contains details of its contents. The relevant article states that the details will

"come as a shock to company directors, most of whom will hear about the new law when they read about it in The Times."

Sadly, the same is true in respect of Members. There is also a story on this matter in the Evening Standard and, worst of all, The Guardian contains direct, on-the-record quotes about the Bill from the Leader of the House.

If the Leader of the House, who is supposed to be the guardian of the rights of this House and of Back Benchers, acting on behalf of our constituents, cannot even make details of legislation available to the House before she personally briefs the press, I do not know what the Government are coming to. Have you received any notice from the Leader of the House, Madam Deputy Speaker, that she intends to come to the House to apologise for this behaviour? It would be preferable if she did so today, while the House is still sitting. If not, what can we do to hold the Government to account?

I thank the hon. Member for his point of order. Mr. Speaker's views are indeed well known on such matters. I have not received any notice from any Minister in respect of their coming to the House. The hon. Member's comments are on the record, and the Minister on the Treasury Bench will have heard them.

I congratulate Mrs. Spelman on securing a Second Reading debate for this Bill. It is a very worthy Bill, with a worthy intent, and it raises important issues that affect every single one of us.

It strikes me that there is nothing more personal than one's experience of death and dying, whether in respect of our own death or sharing the last moments with our loved ones. If we can talk about the age of truly personalised services—services that afford people genuine choice and control over their futures—its ultimate test must be the care and support that we provide for people at the end of their lives. As the hon. Lady said, how people die also remains in the memories of those who live on. These are clearly principles that we all hold dear, and indeed it informs the end-of-life care strategy that the Government published last year, about which I wish to say a little more later.

As hon. Members will appreciate—they have touched on this—the support that people need towards the end of their lives will vary enormously depending on so many factors: their medical condition, religious beliefs, family background, personal character and so on. We must be equal to that diversity in the provision that we make for palliative care, and it is important to say from the outset that in many cases we are equal to it. Many people do receive excellent end-of-life support; many are cared for with tremendous dignity and respect, surrounded by family and friends in surroundings where they feel comfortable and safe; and they get support that is well co-ordinated and holistic, and that pays regard to their personal beliefs and care preferences. Many receive such support, but, as the hon. Lady rightly says, not everyone does so. I agree with hon. Members who say that we need to do everything we can to ensure that they do so in future. That means overcoming some pretty big challenges, and I wish to deal with some of the specifics in a moment.

There are major obstacles to better end-of-life support, many of them with historical foundations in the way in which our society and the health and care services that we use have developed over the years. Traditionally there has been a bias in provision and access to specialist palliative care services. The modern hospice movement is excellent—I support entirely the comments made about the respect in which we hold those services. The very idea of modern palliative care emerged from that movement, which continues to focus primarily on care for cancer patients. As Mr. O'Brien mentioned, consequently some 95 per cent. of referrals to specialist palliative care services are of terminal cancer sufferers, yet they represent only 25 per cent. of deaths. The second biggest obstacle, to which he, like Dr. Pugh referred, involves wider issues about appropriate care.

The hon. Member for Eddisbury specifically raised the issue of dementia, and I would say to him that St. Christopher's hospice is running a three-year palliative care in treating dementia project, which will look specifically at how to provide to meet the palliative care needs of people with advanced dementia, and their families. It involves outreach services provided by specially trained nurses and support from consultants. That needs to inform the development of such services.

The second big obstacle—and the hon. Member for Southport also touched on it—is public recognition. It is a cliché, but death is still the final taboo. As a society, we find it hard to talk about death. It was not always that way. We rarely stop to think about the experience of death and how it has changed in our society. We live in an age when chronic diseases are pre-eminent and the vast majority of deaths follow a protracted period of sickness or failing health. We might have thought that that would give people more opportunity to plan more carefully the circumstances of their death, but what actually happens—especially since the advent of improved medical technology—is that death becomes almost hidden from view, a forbidden topic. Only a third of people say that they have discussed their death with anyone. There is a similar reluctance among health and social care professionals to talk to people about their end-of-life care as the time comes closer.

As the hon. Member for Eddisbury also suggested, that issue is reflected in the number of hospital deaths. Surveys tell us that between a half and three quarters of people would prefer to die at home, but the reality is very different. Only about one fifth of people die at home, with about one in six dying in a care home, which, for many, is their home. Nearly three fifths—57 per cent.—end up dying in hospital.

So the third big issue is the extent to which end-of-life care has been sidelined by an understandable focus on curing and clinical treatment. Tremendous advances in medical science over the past 50 years have led to the tendency to see death as a medical failure. That can cause an unwillingness on behalf of professional staff to accept that someone is dying, leading to the administering of invasive, uncomfortable treatments right up to death, as well as a failure to provide appropriate holistic care at a difficult time for patients and their families.

Finally, there is also a general problem that it is difficult to pin down precisely when someone will die. The diagnosis of terminal conditions does not necessarily mean imminent death. As hon. Members have said, doctors can do a great deal to extend life, sometimes beyond the initial prognosis. For many patients, it is hard to pinpoint when they want such interventions to be stopped.

It is important to acknowledge all those complexities when we consider the specifics of the Bill. In fairness, the hon. Member for Meriden did that in introducing it. The conundrum is that on the one hand we want greater provision for palliative care, but on the other we recognise how much work needs to be done to ensure that that care is available now. No one would argue with the basic tenets of the Bill, and everyone agrees that end-of-life care should be provided. However, the argument that I want to make today is that the Bill is not the best way to deliver better end-of-life care. It could be argued that while the principle and the purpose of the Bill are right, the timing is not.

It is tempting to see a statutory right as the appropriate stick to whip errant trusts and councils into line. In this case, however, I think that the problem is not so much that councils and trusts are erring, but that they are not yet in a position to deliver a full range of options that people could conceivably request if a right to choose were formally conferred. We do not want to reach a position where the formal right exists but the services cannot be provided. Such a situation would raise expectations at a very difficult time when the services cannot be there. It is because of those complexities that the Government's approach has been, essentially, to invest in all the things that the hon. Lady and other hon. Members have mentioned: the provision of services; the provision of training; and the co-ordination of work.

The Bill essentially duplicates the efforts that we are already making to improve end-of-life care through the implementation of the end-of-life care strategy. Both share the same ends: to extend far greater choice and control to people over what happens to them as they approach their death. Leading up to that, the Government have supported a range of initiatives. For example, over three years from 2003 we invested an additional £50 million to tackle inequalities in access to specialist palliative care. That was made recurrent in primary care trust baselines in 2006-07. As part of the dignity for older people measures, we have made a £40 million capital grant available to hospices over the past two years. Those and other early efforts paved the way for last year's end-of-life care strategy, which is the means of fulfilling our election manifesto to double the investment in palliative care and to provide people with the choice to die at home. For instance, the strategy has a strong focus on the very matters identified by the hon. Lady, such as developing community services so that people are effectively cared for and supported in their own home and in care homes—for many people, care homes are their homes.

The strategy emphasises the importance of training the health and social care work force and ensuring that hundreds of thousands of staff who come into contact with dying people have the necessary skills. It highlights the benefit of utilising hospice expertise by encouraging the development of the hospice community outreach programmes.

So we are doing a lot to improve delivery on the ground. It is important to stress that the strategy is a joint venture between central Government and local agencies. The next-stage review charged the strategic health authorities with developing visions for eight key pathways for care, including at the end of life. Clinical groups have been established to put that in practice.

PCTs are developing strategic plans to deliver on those visions, working with local partners, including local authorities and hospices. We have made available £286 million centrally over the next two years to support the implementation of the strategy. We are committed to monitoring this investment carefully through the resources and applications planning form. Working with the strategic health authority clinical leads, we are developing a set of quality markers for end-of-life care to support the commissioning, provision and audit of services. We are also funding the national end-of-life care programme to disseminate best practice and to work with organisations and professionals to develop better guidance and models of care.

We are supporting training and development in a number of ways. We are developing competences and core principles in end-of-life care and we are also developing communications skills training, with 12 pilot schemes selected to test these approaches. We have also asked e-Learning for Healthcare to develop an e-learning programme for health and social care staff.

Another key concern is the need to tackle societal attitudes to death and dying. We are working with and providing funding for the National Council for Palliative Care. It is establishing a national coalition to promote public discussion and awareness of the issues around death and dying.

We are doing precisely what the hon. Member for Meriden says is necessary, and I agree with her on that. We are holding discussions and enabling people to be better informed about the decisions that they can take about their end-of-life strategy. We are investing in training to make sure that the professionals with whom people come into contact are properly trained and are able to deal with the issues. We are investing in the appropriate resources that need to be there to support people in their homes.

I have set out why I feel that it is not appropriate, and not the right time, to put in place a legal right establishing access to palliative care. It is not the right time to do so; it is not a question of being against the principle of the proposals. They may be put in place at a later stage. I conclude by thanking hon. Members for their contributions. I want to make it clear that the Government view end-of-life care as an incredibly important issue, and we are committed to giving it the prominence and due attention that hon. Members have mentioned. Through our end-of-life care strategy, we are already making better care and support for the dying a mainstream issue in local services. I am confident that all that work will reach fruition, and we will deliver the progress that we all want. Rather than offer promises that cannot be kept at present because of capacity, it is far more appropriate to focus all our energies on implementing the strategy and building the infrastructure, skills and cultural change needed to break down the barriers to choice. That is why the Government intend to oppose the Bill.

I thank all hon. Members who contributed to this debate about palliative care. They made thoughtful contributions and helped me in the cause of trying to move the issue up the agenda.

I want to pick up a couple of points from the discussion. Dr. Pugh asked who would choose the right setting in which to receive palliative care. The Bill makes it clear that the patient should choose, but obviously the advice of those in the medical profession is indispensable in making that choice, because they have professional expertise. Doctors who have seen many lives end bring an understanding to the issue that is required by the patient and their family, if they are to make a good decision. It is important for the medical profession, as far as possible, to have a clear understanding of the patient's preferences, because if preferences are not established prior to the point of crisis, they can be very difficult to establish.

I clearly did not make myself as clear as I would wish. Mr. O'Brien raised the issue of people who suffer from Alzheimer's. I raised the general issue of people who ought to have the choice, but who are probably not competent to make a very good choice. I asked whether, under the hon. Lady's legislation, that right would transfer to relatives, guardians or whoever.

That is much clearer to me now. That aspect—the fine point about the competence of the person empowered to choose—needs to be debated in Committee. We need to discuss the point at which responsibility transfers to a named family member, a relative, the spouse or the next of kin.

A number of hon. Members have made points, which it is right for the House of Commons to debate, about where society has travelled to in coping with death, and about the impact on the extent of medical intervention at the end of life. There are qualitative judgments to be made. Obviously, such judgments should be informed by the medical profession, but we also need to weigh in the balance the quality of life that ensues following further and further interventions. We all understand that that issue needs to be addressed.

I particularly thank my hon. Friend Mr. O'Brien, who raised the important point that my Bill would enable children to receive their palliative care at home. It is one thing for an adult to have enough understanding to appreciate what it might mean to be admitted to hospital for one's last days, but such maturity is often lacking in a child, who may have had very little experience of a hospital setting and may fear a setting with which they are not familiar. The opportunity to provide more palliative care for a child in a familiar domestic setting is very precious indeed.

I listened carefully to the Minister, who was very kind in her remarks about the aims and objectives of my Bill. I appreciate that, but we shall have to differ on the question whether there is a need for my Bill. I heard all she had to say about the end-of-life care strategy, but it is just that—a strategy. It is not yet delivery. It is work in progress, and I am firmly of the view that the Bill would increase the likelihood that real progress is achieved. For that reason I hope the Bill will proceed to Committee.

Question put, That the Bill be now read a Second time.

The House divided: Ayes 13, Noes 26.

Question accordingly negatived.