| Previous Section | Index | Home Page |
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 The Government cannot continue to assume that the voluntary sector will come in to fill the services cut or withdrawn.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.
Mr. Mark Harper (Forest of Dean) (Con): 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?
Madam Deputy Speaker (Sylvia Heal): 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.
1 pm
The Minister of State, Department of Health (Dawn Primarolo): I congratulate the hon. Member for Meriden (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 the hon. Member for Eddisbury (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 the hon. Member for Southport (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.
1.16 pm
Mrs. Spelman: 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. The hon. Member for Southport (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.
Dr. Pugh: I clearly did not make myself as clear as I would wish. The hon. Member for Eddisbury (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.
| Next Section | Index | Home Page |