Question for Short Debate
My Lords, I am glad to have this opportunity today to focus our attention on patient choice at the end of life. I would, of course, have preferred not to have it at the end of the parliamentary week.
Although I continue to be a staunch supporter of legislation on assisted dying, and will certainly support a Bill along the lines proposed by the commission chaired so ably by my noble and learned friend Lord Falconer, that is not my main purpose today. However, the right to assisted dying in this country should be part of the choice agenda for that minority of people who want it, are terminally ill and have mental capacity. We all like to exercise as much control and choice as possible over the way we lead our lives. As citizens, I believe we should be allowed also to exercise the maximum choice on the way we leave our lives. That is the issue I want to explore today.
Around half-a-million people die each year in England, two-thirds of them over 75. A century ago, most of us would have died in our own homes; today, most of us will die in hospital. Despite the findings of the Gomez report published in January this year showing an increase between 2004 and 2010 in the proportion of people dying at home, only 20.8 per cent of deaths took place at home. This is a lower proportion than the US, Canada and parts of Europe, such as the Netherlands. We also face the prospect of increasing numbers of people dying with more complex medical conditions which could, if we are not careful, push our healthcare system towards more people dying in institutions.
This Government, like the previous Government, deserve great credit for recognising the importance of patient involvement in decisions about their health and social care. I congratulate the Government on their commitment to the principle of “no decision about me without me” and on continuing the end-of-life strategy published by Labour in 2008. That document was a major political initiative in the sense of opening up the issue of death and dying for public debate. Today I wish to explore, in a non-partisan way, the progress made since 2008. In doing so, I will draw on the extensive, 73-page 4th annual report on the end-of-life strategy published by the Department of Health last month, together with the excellent briefings that many of us have received from Marie Curie, the Alzheimer’s Society, Sue Ryder, Dignity in Dying and others.
It is clear that considerable progress has been made on many of the issues identified for attention in the 2008 end-of-life strategy. There have been many local initiatives, some of which are described in last month’s annual report. I do not have time to go into detail on these developments but they increase our understanding of how we can improve the prospects of a good death, with dignity, respect, relief of pain, a preference for familiar surroundings and the company of close family and friends, when we want it. These considerations are being better addressed as a result of the 2008 strategy and all the work that has been done since then. However, we still have a long way to go.
There remains the difficult issue of with health professionals over striving to keep alive people who simply want to let go of life, without pain, in a place of safety and familiarity and at a time of their choosing. That can sometimes produce a difference of view between the patient and the relatives, as well as with professionals. In these situations, I regard the wishes of the individual person dying as paramount. It is their views that should take precedence over whatever professionals and families think. That informs the rest of what I have to say.
I have an uneasy feeling that this issue has some bearing on the current strife over the Liverpool care pathway. I will be clear: I am a strong supporter of the pathway. Properly applied by trained personnel, it does not hasten death but ensures that the right type of care is available in the last days or hours of life. It does not preclude the use of clinically assisted nutrition or hydration. Frankly, if 22 highly respected patient and professional organisations, including three colleges, can publicly sign a strong endorsement of the pathway, I know which side of the argument I am on; and it is not that of the Daily Mail.
Turning to the place of death, I have an opportunity to pay tribute to my favourite medical tsar, Professor Sir Mike Richards, who, as national clinical director for cancer and end-of-life care, has done so much to take forward the end-of-life strategy. In his excellent farewell letter, in the fourth annual report, Professor Richards identifies:
“Deaths in usual place of residence”,
“the main marker of progress for the Strategy”.
He also says that:
“While this does not necessarily capture individual patient choice it is nonetheless a good proxy”.
He reported that, nationally, by April 2012, 42.4% of people are now dying at home or in a care home. This is an improvement from about 38% four years ago, which is an improvement of about 1% a year. On present trends, it will take until at least the end of the decade before half of deaths occur in the place of usual residence.
This improvement and this national figure conceal considerable regional variations. If you live in the south-west, with 48% of deaths occurring in the place of usual residence, you have more choice than in London, where only 35% of deaths take place there. The Marie Curie briefing cites the Office for National Statistics data for 2008 to 2010, which across the UK show 55% of people dying in hospital. However, there is a huge variation from 39% to 70% between local authority areas for the number of people dying in hospital. That is a huge range. This kind of regional and local variation is totally unacceptable and strongly suggests that there is considerable variation in professional and organisational practice and attitudes to allowing people to die in their place of choice.
Ministers and officials are to be congratulated on securing better measurement in this area, but they now have to confront the fruits of their labours—after all we have a National Health Service. It is not just a matter of fairness and patient choice. There is also a matter of cost, which, as Sir Humphrey Appleby would have said, is, “Not an inconsiderable consideration, Minister”. Again, Marie Curie has performed a public service with its publication on understanding the cost of end-of-life care in different settings, which suggests that a week of palliative care in the community at the end of life costs about £1,000 a week, whereas a week of hospital in-patient specialist palliative care costs virtually £3,000. I am not suggesting that costs should be the only consideration, but we need to reflect on these figures because they suggest that we could offer more choice on dying at home and also save the public purse.
What is to be done? I have three suggestions to help speed up people’s right to have their preferences on where they die implemented, although I make it clear that I am not trying to dragoon people into dying at home and recognise some of the concerns that Marie Curie has expressed about people’s views changing. My first suggestion is to bring end-of-life choice into the Secretary of State’s mandate to the NHS Commissioning Board, as many parliamentarians have suggested.
Secondly, it is no good just rewriting the NHS constitution to give people more rights. The Government need to be bolder. The right should be written into the constitution clearly, in order to deal with the postcode lottery in patient experience and professional practice around the country. Thirdly, we should consider going further and provide citizens with a statutory right to exercise such a right, either in government legislation or in a Private Member’s Bill—an option I would certainly contemplate bringing forward. I look forward to hearing other peoples’ views in this debate, including the Minister’s, and I hope I have given him something to chew on.
My Lords, I begin by declaring my interest as chairman of Help the Hospices, the national charity for the hospice movement, supporting more than 240 hospices across the United Kingdom. I congratulate the noble Lord, Lord Warner, on securing this debate. I find myself agreeing with much of what he says and, as best I can, I shall endeavour to avoid repetition.
Of course, we all bring to our consideration of this question our personal experiences. My father died more than 50 years ago at home, looked after by us his family and by the most wonderful of nuns from the nearby convent, of whom I have never been able to speak too highly. My mother died much more recently at the age of 98 in a care home in which she had spent the last few weeks of her life. They looked after her very well, assisted in the management of her pain by help from a nearby hospice. My mother-in-law died in hospital. I have no doubt at all that the best death, if one can use that phrase—and I believe one can—was that of my father; and the worst death was that of my mother-in-law. There is no doubt at all that far too many people die in hospital. That is the central truth of this debate. The central fact of this debate is that 63% of people say they would like to die at home and a far smaller proportion actually does so. This is what needs to change and I hope that the Minister will give us hope that the Government intend to help bring about this change.
In the time that remains, I want to say some words about the role of hospices in caring for people as they approach the end of their life. I referred in my declaration of interest at the outset of these remarks that there are a number of hospices in the UK. In your Lordships’ House, I need hardly pay tribute to the extraordinary work which the hospice movement carries out. I regard it as an enormous privilege to be associated with it in the way I am. However, there is a misconception about the role of hospices which is highly relevant to this debate and which I want to try to correct. I suspect that when they think about hospice care, most people—certainly very many—think about the care provided to in-patients in our hospices. Yet most hospice care is not so provided. Fully 70% of hospice care is provided for people living in their own homes. Indeed, “hospice at home”, as it has become known, is the fastest growing part of hospice care. So if, as we all hope, more people are going to die at home, the role of hospice care in looking after them is likely to grow significantly. That brings me to my last point. Hospices collectively have to raise £1.5 million a day from charitable sources if they are to keep going. On average, only about a third of their costs are met by the state.
I am sure that the Government do not want to do anything to damage that extraordinary movement, which is the subject of so much admiration both here and abroad and which has been held up by the Prime Minister himself as a superb example of the big society, but the new arrangements for the National Health Service have—I am sure, accidentally—introduced a considerable and unwelcome element of uncertainty into the continuation of even that very modest level of government support. The absence of end-of-life care from the draft NHS mandate, to which the noble Lord, Lord Warner, referred, has, I fear, increased that uncertainty and aroused a good deal of concern.
I wrote to the Secretary of State some time ago to ask for a meeting to discuss all that and, sadly, it has not yet been possible to arrange such a meeting. I do not expect the Minister in his reply to offer me a date, but I hope that he will be able to say something about the future of public funding for hospices that will provide a degree of comfort to those involved in that wonderful work and will enable them to continue to play a growing role in helping those people who wish to die at home to do so.
My Lords, I congratulate the noble Lord, Lord Warner, on instigating this most timely debate.
It is in memory of my late husband that I find it important to speak to your Lordships today. I know that he would have wished to have died at home, but it was not to be. My husband, in his last years, had several complicated conditions. He was diabetic; he had had strokes; he had Parkinson’s disease; and a wound that would not heal due to a tumour that was cancerous.
I live in a rural area, and I take this opportunity to say that rural healthcare is different from urban healthcare. I think that that should be recognised in the NHS Constitution. So many health problems seem to happen at weekends, and one is dependent on the out-of-hours service. I feel that there should be a register in each out-of hours-area of people with long-term complicated conditions, so that the out-of-hours doctors know which patients are at risk. There is no way to retrieve individual health records at weekends or at night.
As it was on a Friday evening when my husband had problems, I got the out-of-hours duty doctor to come out. She had to make the 24 mile journey from Harrogate and, because my husband had a swallowing problem, she prescribed a liquid antibiotic. We had great difficulty finding a supermarket which could provide that and, over the weekend, his swallowing became more difficult. On Saturday, I spoke to another out-of-hours doctor who did not come out and rather inferred over the telephone that all was all right. On Sunday, I had to represent my husband at his church lunch, which he would have gone to. On my return, things had got worse. After another agonising wait for another out-of-hours doctor to ring back, an ambulance was sent and my husband was taken to hospital with me and my helper following behind by car.
I have tried to get an antibiotic given to him by drip, but this was not to be and is still not available in the community in a rural area. I had carers for my husband who could have managed a drip.
He died in the A&E department with me with him. If only more help was available in the community, all the stress and trauma would be removed. As it was, two young and inexperienced police officers arrived at the hospital and nobody seemed to know what to do. My husband died of pneumonia, which can develop very quickly.
I tell this story as I hope that more people can die at home with the comfort of knowing that all that can be done to help is forthcoming. With the economic situation, this is very doubtful but I was pleased to read over the weekend that the Secretary of State for Health is doing something which I hope will give hope to people who have become very concerned at the treatment and care of the dying because of the Liverpool care pathway. I cannot think of a more cruel practice than being denied fluids or food if one wants them. I often wake in the early hours with a very dry mouth and I keep a bottle of water next to my bed. To keep the mouth moist and clean should be a basic care need. Many people now fear having to go to hospital and many doctors feel guilty at having used the Liverpool care pathway, which seems to have gone down the wrong road and, instead of care, it has become a way of speeding up death in an underhand way.
I hope that the Secretary of State for Health, Jeremy Hunt, will make it clear, with his colleagues, that not only should everyone concerned be involved in end-of-life care but that the patient should not be starved to death. They should be allowed to die in as much comfort as possible when their time comes. This should be made clear in the NHS Constitution and I agree that there should be no decision made about me without me, be it in the community or hospital.
I join in congratulating my noble friend Lord Warner on having achieved this debate.
As a society we are not normally good at talking about death and in some areas it is still almost a taboo subject, so it is even more welcome that we can talk about it frankly and openly. We are talking about choice. There are many people who contribute to end-of-life care and they should be acknowledged—doctors, nurses, health care assistants, social workers and of course the family of the person who is nearing the end of his or her life.
I understand that there is controversy about the Liverpool care pathway. I do not know that much about it but I disagree with the noble Baroness. I do not think that it is such a reprehensible approach and there is a lot to be said for it but perhaps that needs to be debated on another occasion.
Of course it is important to enable more patients to die at home if that is their choice. We know that most people still die in hospital. The figures I have are 51% in hospital, 21% at home, 22% in a care home and 6% in a hospice. Although in commenting on the quality of the care, 92% said that a hospice provides excellent care, or their relatives said that. So when asking people about whether they would choose the place of death, only 44% expressed a preference but of these the vast majority said that they wanted to die at home.
My contention is that it is a matter not just of choice but of informed choice. It is very easy to say that home is the only place but I do not believe that it is quite like that. It may not always be practical to die at home and the hospital or residential hospice may provide the best care for people with complex needs and for managing pain. People need to be better informed about the reality of dying at home. If there is a large supportive family that is one thing but suppose there is not; suppose the person does not have a family to support them. How can they then die at home? It is not practical. It is understandable that, where there is a family, people want to be surrounded by the family as they reach death and normally that will be all right but that also puts a heavy burden of caring on the family, which may not be in the best position to do that. Although the onus must be on choice to enable people to die at home, I am just uttering a word of caution that it may not be the most appropriate decision for them. Indeed, if one is getting near death, at the outset, one may say, “I want to die at home”, but as one’s condition deteriorates, that may not, in fact, be the choice one wants to make, so there always needs to be the opportunity for people to change their minds. What is important is that all healthcare professionals should inform the patient of all care and treatment options so that the patient knows the consequences of any decision they make.
As most people die in hospital, most complaints about hospitals relate to end-of-life care. That is understandable, but that may not be the only matter for consideration. Funding is a problem, and one does not want a situation where people choose an option because it is free. Hospitals are free, I think hospices are free, but at home, financial support for care may be needs-tested and means-tested. One does not want a situation where people choose on the grounds of finance not on where they will be happiest and more at peace with themselves.
Dying at home, in a hospital or in a hospice should be an informed choice, and I would like the NHS Constitution to reflect that, but I add, as my noble friend Lord Warner did, that I feel that assisted dying should also be one of the informed choices. I hope that palliative care will not always be seen as an alternative to assisted dying but rather as complementary to it. In that way, patients would have a happier set of choices and a better path on the road to death.
I am pleased to support the arguments made by the noble Lord, Lord Warner, and I am grateful to him for giving us the chance of this debate.
This is a very difficult area in which to bring about change or certainty, and one of the themes of what I say will be its complexity and confusion. I hope it is not too unrealistic to say that we should be aiming, perhaps in the long term, for simplicity and honesty. Despite that, I believe considerable progress has been made recently with, among other things, the Liverpool care pathway. We have heard about the scale on which it has been adopted to massively positive effect, but with some few negative instances and, as the Times editorial said recently, some mischievous controversy.
Research shows that poor communication around the LCP is not the norm. National Care of the Dying Audit – Hospitals assessed the LCP and found that 94% of relatives and carers were given a full explanation of it and that healthcare professionals discussed it with 56% of dying people. The LCP is a helpful process to minimise suffering at the end of life.
We should be grateful for what Marie Curie Cancer Care has done in this field, particularly in terms of highlighting the timing and cost of hospital in-patient care versus home care. Even with the clear cost advantage of home care, it is known to be quite difficult to set up all the elements satisfactorily, particularly for a patient or family already under stress. We have been given figures on the shortfall between those wishing to die at home and those actually able to do so: 60% want to, but only 21% achieve their wish. According to the National Audit Office, 40% of end-of-life patients had no medical need to be in hospital. In that respect, the message of this debate should be clear. On the NHS Constitution, while I broadly support the recent firming-up of some wording, it might be providing another level of complexity in shared decision-making.
How patients become active and equal partners with their clinicians about their care is still hard to define in any great detail, but that might be the direction in which we should be going. In complex cases, it may be that consultants might be too frightened of being sued to give advice or take action. We have heard tell of what might be called the Shipman effect seeming to inhibit common sense action. Maybe until recently there was a problem of nurses or health workers giving any response to patients who wanted what you might call a normal conversation or guidance on end-of-life matters. The LCP would seem to open the door to some sensible discussion, but it might be difficult for a passing nurse to know the medical status of the person who is asking questions. On the particular matter of assisted dying, I understand that the Royal College of Nursing has given some guidelines in a booklet, but they are understandably not exhaustive. Similarly the GMC has produced useful written guidelines to treatment and care towards the end of life. In understanding and researching this subject, as I said at the beginning, I am struck by the confusing multiplicity of differing sources of advice in this field. It is encouraging that discussion and dialogue are taking place but, for an individual trying to understand what options are available, choices are indeed complex.
In recording and co-ordinating patients’ wishes, we learn that there is something called advanced decisions, lasting power of attorney, advance statements and advance care planning. We learn that in the primary care field, care can be centred on the gold-standard framework, which sounds desirable. There are electronic palliative care co-ordination systems—recording a patient's wishes, one example of which is Coordinate My Care, which is being apparently implemented in London, and is available in addition to about half of ambulance trusts.
With some of this available, and most highly commendable, it is understandable that research shows that patients' misunderstanding and confusion is widespread, as to what their real choices are. I believe, however, that we are moving along with the NHS Constitution, in the right direction. It may be that in advancing the debate and options in this difficult area, such imperfect language and choices are bound to be complex and confusing. Finally, one of the welcome new additions to the NHS Constitution, apparently from April, is what is called the “duty of candour”; meaning that staff must be open and honest if things go wrong or mistakes are made. I hope that this candour might eventually spill over to a more general honesty in end-of-life discussions about achieving a good death.
My Lords, I, too, thank the noble Lord, Lord Warner, for tabling this important debate. It could not be more timely, in the light of the Government’s plans announced this week to strengthen the NHS constitution. In life, we are largely trusted and enabled to make decisions for ourselves. There is no reason why people should be denied this right and responsibility when they are dying. As we have heard, surveys indicate that there is a large gap between where people say they would prefer to die and where they actually do die. One survey on behalf of Cicely Saunders International found that 60% of people would prefer to die at home, but in 2010 only 21% actually did so, with 53% of people dying in hospital. This is not a slight on hospitals and their dedicated staff, though misplaced ethics of keeping people alive in the teeth of the inevitable and conservative protocols on pain relief for fear of being accused of hastening the end mean that palliative care is not always all that is claimed for it. As Prue Leith so movingly testified in the Spectator article of 27 October, rather it is a comment on the benefits of dying in your own home. At the end of life it is often unquantifiable things which can greatly increase somebody’s comfort—being in your own surroundings with those you love—though, again, the importance of good palliative care cannot be overstated. The latest figures for 2010-11 show that whereas just one in five people nationally died at home, a third of those receiving specialist palliative care did. This demonstrates the importance of specialist care in enabling people to die at home with appropriate support and the variation in what is available in different areas.
Of course, some people would prefer to die in hospital. For others, with complex care needs, it may be impractical for them to die at home. However, when someone does want to die at home, we must strive to do all we can to respect and act on their wish. Specifically, we need to remove the barriers that prevent patients from dying in their preferred place of care: patients’ treatment wishes not being recorded, poor co-ordination of information, inappropriate emergency admissions, lack of effective discharge from hospital, and not having a specialist palliative care team in place.
With this in mind, I greatly welcome efforts both by this Government and their predecessor to improve access to good quality, patient-centred end-of-life care, as set out in the End of Life Care Strategy. Since the publication of the End of Life Care Strategy in 2008, there has been considerable progress in identifying patients nearing the end of life, planning for their care and recording their medical preferences. I am particularly impressed with Coordinate My Care, the electronic end-of-life care register to which the noble Viscount, Lord Craigavon, has just referred, and which was piloted in Sutton and Merton and is now being rolled out across London. Coordinate My Care records patients’ end-of-life preferences and can be accessed by all relevant professionals. The tool ensures that patient information is shared effectively. Alongside this, it prevents unnecessary hospital admissions and allows patients to have the kind of death they want by enabling healthcare professionals to deliver the level of medical intervention decided by the patient. Preliminary audit shows an increase in the number of patients dying in their preferred place of care. Indeed, the tool appears to have had quite a dramatic impact, with people dying in hospital falling from 66% to 21% in the pilot areas. If the success of the scheme is confirmed, I hope that it can be rolled out across the NHS.
That brings me to the NHS constitution and the proposed changes announced this week. On this, my glass is half full. I welcome changes to ensure that patients and, where appropriate, families and carers, are consulted on end-of-life care decisions. I also welcome the underpinning of compassion, dignity and respect as central values of the NHS. However, the constitution could go further. Specifically, the proposal that people should be given information about test and treatment options should be extended to ensure that patients are made aware of their care options, including the use of patient preference tools. This could encompass advance care-planning tools, such as Coordinate My Care, which allow patients to state their treatment preferences and a preferred place of care, and to decide in advance, with legally binding effect, that they do not wish to receive treatment. Good care and treatment go hand in hand, and this should be reinforced by the constitution. The development and provision of end-of-life care has come a long way in a relatively short space of time. The efforts of all involved should be applauded. However, we can do more and should do more in the knowledge that choice and control are central to ensuring dignity in dying.
My Lords, I am grateful to the noble Lord, Lord Warner, for securing this important debate. We should probably all declare an interest as speakers since the one certainty is that we shall all die. We speak of dying as a process which occurs in the last stages of life but since, each day, we are moving nearer to the moment of our death, we could be said to be dying all the time. Living and dying are not separate experiences, and we want those in the last stages of life to live well so that they may die well.
It is an entirely understandable human desire to die at home, which I am sure is an aspiration we should meet, while recognising that not all who wish to die at home will die best at home for them or their relatives, as the noble Lord, Lord Dubs, has illustrated.
Many years ago, when I was a newly ordained curate, an elderly lady of great faith and serenity said to me, “I don’t fear death but I’m scared of the mechanics of dying”. It is a frequently repeated sentiment. If anything, the mechanics now concern people even more, given the complexity and range of possible medical interventions. The longing to die at home is understandable if the fear is of a long, drawn-out and possibly distressing process in a hospital ward where there is not even the comfort of familiarity.
Therefore, it is no surprise that hospice care for the dying rates so highly among bereaved relatives. As we have heard in VOICES’ national bereavement survey, 92% of relatives of those who died in hospices rated it as good or excellent care, which is a very high rate of satisfaction in any sphere of activity, let alone one as sensitive as this. Yet if I interpret those figures correctly, that same survey revealed that 71% of those relatives said that the dying person had wished to die at home and that their own desired place of death would be similar.
How is the contrast in the figures explained? I think that even relatives who are highly satisfied with hospice care of their loved ones know that only a small number of people die in a residential hospice—just 6%. Even the best hospice experience does not replace a natural longing for our home as the most reassuring place to spend our last days. The challenge must be to ensure the best approximation of the quality of the hospice experience at home, which is possible, as the noble Lord, Lord Howard, has illustrated.
My wife is a palliative care nurse and I observe how, alongside excellent pain relief and medical care, she and her colleagues include relatives very effectively in the practical care of patients. The freedom from prescribed times of visiting and the ability of relatives to stay overnight are important but the unforced inclusion of relatives in the practical care of patients is liberating and humanising both for them and for the patient. The hospice context gives the relatives confidence that the whole person is being cared for and helps them to be effective carers.
Such things are possible in the home environment but it can be much more testing for the relatives and the patient. That will be especially the case if we encourage dying at home at a time of financial stringency because it is cheaper. It will need considerable investment; yet in Norwich there have been recent cutbacks in the provision of palliative care at home. We seem to be going the other way. I hope that the Minister can give us a crumb of comfort. Many relatives are glad to be volunteer carers, but without good induction, support and respite, they can easily become overextended and exhausted, and their anxiety or disappointment in themselves disturbs the loved one for whom they are caring.
Earlier this week, I was told of a patient who was sent home to die from hospital while in the last stages of lung cancer. His family had not been warned that the cancer had enveloped his pulmonary artery. A slight bleed led to him being hospitalised again. A few hours after his relatives had left, he had a catastrophic bleed, which flooded his bed immediately and rendered him unconscious. Had it happened at home, it would have been horrendous for the family and would not have provided the sort of death which lay behind their corporate desire for him to die at home.
Just over 30 years ago, Philip Toynbee, the writer and literary critic, died of cancer. He kept a sort of spiritual journal of his final months, which was published after his life as End of a Journey. He had come under the influence of a community of contemplative Anglican nuns in Wales whose calm, ordered and prayerful life was a big but attractive contrast to much of his own. In his last weeks, Philip Toynbee was concerned that he might die on the operating table when a last procedure was suggested. He said he did not want to be deprived of the proper stages of dying. He said, “I want to learn all I can from it.”. I have never forgotten that rather deep and unexpected phrase. If we approach the dying as we would the living, enabling them to learn from the experience rather than believe they have nothing left to learn, then we will always treat them with immense dignity.
My Lords, I need to declare an interest, in that I was a member of the Commission on Assisted Dying chaired by the noble and learned Lord, Lord Falconer. It was a very moving experience; it was also a very educative experience. I do not think it was something to which I had given much thought. I was a bit in agreement with Woody Allen, who said, “I don’t mind dying; I just don’t want to be there when it happens”. The Bill will be brought forward by the noble and learned Lord, Lord Falconer, in the new year. The right to die at home—the subject of this debate—seems to be just one small part of thinking about our approach to death.
First, I want to reflect on something said at a Dignity in Dying conference in July, which I was asked to address as a member of the commission to discuss its findings. It was followed by a lobby of Parliament, which noble Lords may remember. One of the speakers said that after anti-slavery, women’s rights, the abolition of capital punishment, the legalisation of abortion and gay rights, thinking of ways to die, to ease death and to give more choice about death is the next great liberal cause. I agree with those sentiments. I note that the chair of one of the major medical bodies recently said that a botched death should now rank with a botched abortion as a medical disaster.
Ann McPherson was a wonderful Oxford general practitioner who founded the organisation Healthcare Professionals for Assisted Dying before she was diagnosed herself with pancreatic cancer. She gave evidence to the commission, but died at the end of May. Ann’s daughter has written an account of her death at home; it is available on the internet. It was a terrible death, but the important point that she wrote about was that it was at home. If a death as complicated as that could be managed at home, then that is the point of this debate.
Being able to choose to die at home or where people live should be a first starting point in the end-of-life care. I support the views put forward by many noble Lords, particularly by the noble Lord, Lord Warner, in this debate. Norman Lamb MP, Minister for Care and Support, recently stated that a review in 2013 of progress in the end-of-life care strategy,
“will inform us when a right to choose to die at home, including a care home, might feasibly be introduced”.—[Official Report, Commons, 30/10/12; col. 149W.]
I hope it comes soon.
Above all, I think we need to talk about this a lot more. Very few people who came before our commission seemed to know about the choices mentioned by the noble Viscount, Lord Craigavon, of advance decisions, lasting powers of attorney, advance statements and advance care planning. Not enough people seem even to know the term “palliative care”, let alone be able to access it. It is a common saying that the only two certainties in life are death and taxes. It seems to me that in this great Chamber, we spend a much greater amount of time talking about taxes than we do about death. As the noble Lord, Lord Dubs, said, we should talk about it more. As the Times put it in the leader already referred to this week:
“Without discussing how we die, we have not truly explored how we live”.
I thank the noble Lord for organising this debate and I look forward to further discussions about these matters when the Bill to be put forward by the noble and learned Lord, Lord Falconer, enters this House.
My Lords, for this timely debate, I draw on the information that I have from the Cicely Saunders research institute, of which I am an external international adviser, and my role in chairing the palliative care strategy board in Wales. The topic of licensing doctors to prescribe lethal drugs at lethal doses is complex, and I do not think that it falls within the title of this debate, but I would simply say that from many conversations that I have had with Dutch doctors many have said that they got it the wrong way round. In Holland, one in 38 of all deaths are by euthanasia, but they still have not established specialist palliative care.
I turn to patients’ desire to die at home. About two-thirds wish to be cared for at home and go on to die at home, followed by a preference for inpatient hospice care, which runs at about 29%. That is an important, large number of people who would like to access inpatient hospices when they feel that home care is not an option for them. The wishes tend to remain constant, but not always; the reversal in trends away from home deaths happened after 2004, when the end-of-life care was instigated, and the numbers have risen to over a quarter for those with cancer who are now at home, but hardly risen at all for those dying from other diseases, only going up from 16.7% in 2004 to 18% in 2010.
For those patients accessing hospice at home services, who provide high levels of hands-on care in patients’ homes, the results are dramatically different. Of those referred to hospice at home services in Wales, 92% of St David’s Foundation patients remain at home. In Pembrokeshire, 89% of Paul Sartori Foundation patients, 32% of whom have non-cancer diseases, remain at home. In Gwynedd, those referred to the domiciliary palliative care teams have achieved 45% home death rates overall in 2010-11. So things can be very different very easily.
The conversation around care and wishes happens early and is dynamic and ongoing as the patient’s condition changes. The conversations must address fears and what is likely to happen, what the family feel that they can cope with and what they feel they cannot—and also dispel illusions around what is not likely to happen.
It is worth noting that the Cochrane review of the literature showed that when palliative care services are available the chance of dying at home is doubled. The impact of patient-focused services aimed at supporting those at the end of life is key. The most important factors that enable home death in the UK are receiving home care and intensive home care, living with relatives, having extended family support, being married, being affluent, and being younger. Interestingly, functionally less able patients seem to be able to be at home more often, probably because home care services find it easier to fit to the needs of a bed-bound patient than an ambulant one.
Socioeconomic status is inversely related to home death rates, and lower rates are also seen in the Chinese, black African and Caribbean populations, probably for multiple cultural reasons. But for NHS policy, two other factors emerge that are crucial. First, when GP visits are more frequent, as rated at three or more visits during the terminal illness, home death rates are higher. So if a guiding principle of the NHS is to aspire to put patients at the heart of everything that it does, then continuity of primary care and the ability for home visiting of the terminally ill across seven days a week will need to be addressed, because disease respects neither the clock nor the calendar.
Secondly, there is a relationship between time that relatives can take off work and their ability to provide home care support. The Canadian compassionate care benefits system warrants looking at carefully in the context of our changing NHS as it may well prove to be the most cost-effective way to support the terminally ill at home. Relatives’ satisfaction with care is greater when home care is achieved; this seems important for children who find hospital or hospice visiting difficult, although I could find no specific study of the long-term effects of hospice at home on the bereaved child’s morbidity.
There are also sound financial reasons to help patients to remain home. The cost benefit is clear: the average length of care is almost 38 days, which in a hospital bed would cost over £16,000. In Wales, as in England, we have estimated hospice at home costs to be nearer one-third of hospice in-patient costs, even when some overnight care is provided.
This debate has looked at home death rates, perhaps because they are easy to measure, but we need to know where people want to live during their final illness and ensure that services are rapidly responsive to need. Above all, staff attitudes must focus on patient need. Attitude costs nothing but the right attitude is of infinite value. If patients do not feel safe and confident in care, they will not be able to stay at home.
We must also reassess some of the insistence of services to have a hospital bed in the home. Many people want to be in their own bed and could be moved quite easily on a sliding sheet. The evidence for the ubiquitous provision of a large invasive hospital bed warrants looking at. It is not patient focused and can effectively destroy a home atmosphere. How can a relative be easily cuddled on a large hospital bed in a small cramped living room? We as healthcare professionals have to be risk aware and not risk averse and prepared to take informed risk to meet patients’ needs. One area that we have instigated in Wales has been to put “just in case” boxes into patients’ homes so that, if symptoms become difficult, fluids can easily be set up and drugs given. Investigations at home should be easy.
I will say a very brief word on the Liverpool care pathway because of the preceding speeches. This important guidance is aimed to roll out the best of hospice care into other places of care. It is not a protocol. It is not rigid. It is important that people assess whether the person is irreversibly dying, whether it is an anticipated and expected death and, absolutely crucially, whether the family know and accept that the person is dying. Is regular review in place? Does the patient need fluids for comfort? Do they need their drugs altering? The planning of regular review is crucial. It is the regular review that detects the person who is not irreversibly dying when people think again. Happily, these patients have so-called come off the pathway. It is not a one-way street. However, if it is being badly implemented at a local level, it warrants investigation. This is crucial.
I quote from a patient’s husband about hospice at home. He said:
“The support we received from St David’s Hospice Care was incredible. Their nurse arrived and co-ordinated everything when my wife came out of hospital and another nurse came overnight: I was amazed at the care and support we as a family received. My wife died at home 16 days later surrounded by her family and a Hospice Care nurse”.
We can provide good care but we have to be flexible.
My Lords, I congratulate the noble Lord, Lord Warner, on initiating this debate. I agree with the points that he made and I am very sorry to have arrived a couple of minutes after he started. I hope noble Lords will forgive me. Most points have been made so I will be very brief.
We have possibly all in this House had experience of people dying well and people dying badly. My most distressing was perhaps some time ago with a relative dying of cancer in an open ward of a hospital. There was a lack of access to loved ones, a lack of privacy and dignity and an abuse of human rights that today—because we have made progress—would be recognised as such. There are still improvements that we have to achieve if we are to get this right.
More recently I experienced wonderful palliative care at home for an elderly woman. A team visited her eight times a day, sometimes through snow and ice, to ensure that she died well. This was amazing and showed what can be achieved. Even more recently someone else who was dying experienced bed sores and ankle swelling just before dying and the palliative care team were unable to give adequate morphine because they were still frightened, after Harold Shipman, of this being interpreted the wrong way. We still have improvements that we must make sure are made because the right to decent, compassionate end-of-life care is something to which we all aspire and must achieve.
Sadly, end-of-life care has in some respects become a bit crisis-driven and responsive. We ought to be able to plan it so that this is not the case in future. The National Bereavement Survey suggested that levels of dignity were highest in hospices and lowest in hospitals, as we know, but that improvements still needed to be made in certain areas. I agree with the noble Lord, Lord Low, that the gold standards framework for recording people’s wishes, preferences and priorities is very important and should be adopted. I was a signatory to a letter only this September about the proposed NHS mandate, which, sadly, made no reference to end-of-life care. Many people signed that letter. It is appalling that this issue is not higher on everybody’s agenda. However, we have to consider certain issues in relation to this matter. Physicians are still not adequately trained as regards end-of-life knowledge as well as end-of-life care. They will not all be actively involved in this sort of care but they should all know more about it, not just the specialists. We need to develop and standardise the systems for recording people’s wishes. There is a pressing need to ensure that information follows patients across different settings because people often want to die with relatives and it is still difficult to get all the information in the right place at the right time. We need to develop the system for recording and establishing the best interests of patients. We also need to introduce better training for dealing with grief among the family and other parties.
The noble Viscount, Lord Craigavon, talked about the lack of knowledge that people have about the Mental Capacity Act, advance decisions, lasting powers of attorney and the legal implications of going down the road of using any of those. The public need to be much more aware about these matters. Despite concerns about confidentiality and privacy, which I think can be overcome, we need a national register which is accessible and ensures that people’s wishes prevail. I agree with the noble Lord, Lord Warner, on that. Of course, it is essential to talk to the family but the person’s wishes must prevail.
My Lords, this has been a fascinating debate with uniformly high-quality contributions. I, too, am very grateful to my noble friend for initiating it and have a great deal of sympathy with the thrust of his argument.
As we have heard, some people die as they would wish but many do not. Some people experience excellent care but, sadly, many do not. We know that many people experience unnecessary pain at the end of their lives. Although we have made progress and although the current Government are carrying on where the previous Government left off in relation to this matter, we know that much more needs to be done. We are faced with the fact that a large majority of deaths, following a period of chronic illness, occur in NHS hospitals yet many people would prefer to die at home.
My noble friend Lord Warner was right to say that an increasing number of people will have more complex medical needs and that that might push them into the hospital system unless we are very careful and are determined to provide the choice and service required if one is to die in the community or in one’s own home. That means responding not just to the requirement to improve health and social care services but also to the points raised by the noble Lord, Lord Howard, and the right reverend Prelate, particularly in relation to support for the hospice movement. This has been a recurring problem. We have to face up to the real issue of the reluctance of NHS bodies properly to fund hospices in the past and, indeed, the reluctance to give them certainty of funding for two or three years ahead as opposed to funding on an annual basis.
I would like to ask the noble Earl, Lord Howe, about the implications of the White Paper and the draft Bill in relation to care and support. My understanding is that it has some words of comfort around certain free end-of-life care services. I should be grateful if the noble Earl could provide some clarification on that.
This is not the time to debate the Liverpool care pathway, but I was moved by what the noble Baroness, Lady Masham, said. However, I did not recognise the issue of the Liverpool care pathway in what she said. I would draw a distinction between the philosophy that the noble Baroness, Lady Finlay, gave about how it should work and what may be the problems in practice in some parts of the country. It is important to distinguish between the pathway as it should be and poor practice, which of course must be rooted out and investigated.
An important point made by my noble friend Lord Dubs and other noble Lords is that in seeking to help people to die at home and to help their relatives, it is important to educate people on the reality of that. People who wish to die at home surrounded by their family have a desirable aim but, as Sue Ryder has pointed out to us, often the family can get very consumed with caring responsibilities and issues can arise that make end-of-life care at home more stressful. We therefore need to understand the implications of choosing to die at home.
We should not forget the contribution of social care. A recent Nuffield Trust survey showed that this is a significant part of the care that needs to be provided for people in the final months of their life. However, there is a great variation in the use of social care from local authority to local authority; it matches the NHS variations in different parts of the country in terms of how many people are able to die at home, as my noble friend mentioned. That is not acceptable and comes back to the Government’s response to this.
I know that the noble Lord, Lord Howard, and other noble Lords have raised the issue of the mandate, and I am aware that there is a consultation on the NHS constitution. It is proposed that the constitution be amended, in relation to patient choice and involvement in healthcare, to state:
“You have the right to be involved fully in all discussions and decisions about your … health and care, including in your end of life care”.
That is welcome. I ask the noble Earl: is that enough, because it does not actually mean that the kind of services that would enable choice to be exercised will be made available?
I also say to him that the consultation document states that the report from the NHS Future Forum made it clear that there is a problem with the constitution in terms of whether the health service is sufficiently cognisant of the constitution and what it means. I know that in the consultation there are proposals to make NHS staff more readily aware of it. The point that I would put to the noble Earl is: if it turns out that that is not sufficient, will he be prepared to consider my noble friend’s suggestion that a legislative solution may be required to ensure that the services provided are sufficient to enable people to exercise real choice and to have the kind of end-of-life care in their home that we would all wish people to have?
My Lords, I congratulate the noble Lord, Lord Warner, on securing this debate and on his excellent speech. Indeed, we have listened to a series of moving and powerful speeches throughout the debate, which I, for one, greatly appreciate. We have heard of a number of excellent experiences of care for people approaching the end of their lives. Unfortunately, there have also been reported some much less happy experiences, not least those referred to by the noble Lord, Lord Blair, and the noble Baroness, Lady Masham.
I know that the noble Lord, Lord Warner, is a keen supporter of better end-of-life care services, and I confirm to him immediately that the Government are committed to developing and supporting end-of-life and palliative care services, to ensure that the care people receive, whatever their diagnosis and wherever they are being cared for, is compassionate, appropriate, good quality and supports the exercise of choice by care users. That position is common to all speakers this afternoon.
As noble Lords have so eloquently said, we know that most people would prefer to be cared for and die at home, in familiar surroundings, with their family and friends, and this can also mean a care home where that has become someone’s home. However, we also know that most people die in hospital, the place where many would least prefer to be. Realistically, as the noble Lord, Lord Dubs, pointed out, many people will continue to die in hospital. They may be too ill to be anywhere else, they may need specialist care, they may have an illness that quickly takes hold, or it may be their choice to do so, following discussions with their families and care professionals about their health and care needs. Because of this, we continue to work to ensure that hospital care improves and much encouraging work is being done on this, including through the National End of Life Care Programme’s Transform programme for acute trusts. This will really improve services, integration and, ultimately, people’s experiences.
However, as the noble Baroness, Lady Masham, movingly reminded us, many people die in hospital unnecessarily and more could be cared for and die at home if resources were in the right place and if systems enabled services to be provided where and when they were needed. We made the commitment in the White Paper, Equity and Excellence: Liberating the NHS to,
“move towards a national choice offer to support people’s preferences about how to have a good death”.
Liberating the NHS: No Decision About Me, Without Me reiterated our commitment to introducing a right to choose to die at home, including a care home, when services are well enough developed to allow that to be a realistic offer so that people have access to appropriate, high quality care. Responses to the Liberating the NHS: Greater Choice and Control consultation demonstrated strong support for this.
This choice has, of course, to be within the current legal framework. For choice to become a reality, commissioners and providers need to ensure that quality services, especially in the community, are available. A lot of work is needed in order to enable this to happen, but we are making steady and encouraging progress. The latest data show that 42.4% of people now die in their usual place of residence—that is, at home or in a care home—where people say they want to be. I take the point of the noble Lord, Lord Warner, about local variation, which we must certainly tackle and will, through the strategy, but we can compare that figure to 2008, the year the Department of Health’s end-of-life care strategy was published, when 38% of people died in their usual place of residence. In contrast to that, just over half die in hospital. Again, that’s a big improvement from 2008, when about 58% of people died in hospital. This means that almost 30,000 extra people have been able to die in the community, where they wanted to be. For each of those people, for each of their friends and family members, that is a huge comfort.
The steady progress has been the result of much hard work by many health and social care professionals, all underpinned by our ongoing work to implement the end-of-life care strategy. Your Lordships will know that the strategy received cross-party support when published in 2008. It aims to improve care for people approaching the end of life, whatever their diagnosis and wherever they are, including enabling more people to be cared for and die at home if they wish. On 16 October, we published the strategy’s fourth annual report, which describes in detail the work being undertaken. This can be found on the department’s website and I commend it to your Lordships as a good and encouraging read, but I want to highlight two key areas.
Electronic palliative care co-ordination systems allow people to express their preferences for care, to ensure proper care planning and for that care to be co-ordinated. The noble Lord, Lord Low, and the noble Baroness, Lady Masham, in particular, will welcome this. The EPaCCS contain key patient information and are intended to be accessible to all appropriate service providers, including ambulance services, out-of-hours services, A&E and community services. I believe that they have the potential to improve communication, co-ordination and the planning and delivery of care. More than 30 EPaCCS are now implemented or in development around the country and the rollout is continuing.
I also want to mention VOICES, the first ever national survey of bereaved relatives, helping us to understand how people actually experience care at the end of life and giving commissioners an invaluable critique of services. A critical common theme of these and other activities is communication between services, between organisations and, most important, between patients, their families and health and social care professionals. The noble Baroness, Lady Finlay, was wholly right in drawing attention to this, as she was on so much else in her excellent speech. I cannot overemphasise the part it plays in improving care at the end of life to the benefit not only of the patient, but of the bereaved.
On Monday, the Government launched a consultation on a range of proposals for strengthening the constitution, drawing on the recommendations of the NHS Future Forum. I was particularly appreciative of the comments of the noble Viscount, Lord Craigavon, on those proposals. One of the forum’s recommendations was that the constitution should be much stronger on patient involvement and shared decision-making. We agree. Our proposals make several important changes here—strengthening principles, rights and pledges. In particular, I say to the noble Baroness, Lady Masham, that we also set out a new responsibility on NHS staff to involve patients, their families and carers and to treat patients not only well but compassionately. But we go further by proposing to include end-of-life care in the constitution for the first time.
First, as mentioned by the noble Lord, Lord Hunt of Kings Heath, we propose to strengthen the right of patients, their families and carers to be involved fully in discussions and decisions about their health and care, including their end-of-life care. This draws on the new statutory duties on commissioners to promote the involvement of patients set out in the Health and Social Care Act 2012.
Secondly, we propose to introduce a new pledge on care planning. This sets out a commitment by the NHS to involve patients in discussions about planning their care and to offer them a written record of what is agreed if the patient wants one. This would apply to patients with long-term conditions or at end of life.
The Government believe in and fully support the constitution. We have identified a range of proposals to strengthen it. As part of this, we feel it is helpful to make clear to patients what they are entitled to expect from the NHS at the end of life.
The noble Lord, Lord Blair, the noble Baroness, Lady Greengross, and the noble Viscount, Lord Craigavon, among others, drew attention to the need for there to be awareness of people's wishes at the end of life and to give informed choice to patients. To be able to have real choice, people need to understand what their options are and have proper discussions about the issues around end of life care. But that is constrained by our general lack of willingness to discuss death and dying. That is why we are supporting the Dying Matters Coalition, which is encouraging discussions among the public and raising awareness of end-of-life care issues. That is a particularly welcome development.
A number of noble Lords referred to the draft mandate, including the noble Baroness, Lady Greengross, the noble Lord, Lord Warner, and my noble friend Lord Howard of Lympne. We are aware of the concerns that have been raised during the consultation process that the draft mandate did not include end-of-life care. It is being given careful consideration as we come to finalise the mandate over the coming days.
My noble friend also referred to uncertainty over the future of state funding for hospice care. I would like to acknowledge today the important role of the hospice sector, particularly its valuable contribution to care in the community such as hospice at home services. My noble friend will be familiar with the work that we are taking forward on the development of a per-patient funding system. The aim of the department’s work on palliative care funding is to develop a per-patient system. The work will build on that of the independent palliative care funding review. The new funding system that we are aiming to develop and introduce will cover care regardless of which organisation provides it, encourage more community-based care so that people can remain in their own homes and be fair and transparent to all organisations involved in end-of-life care. The aim is to have a new system in place by 2015, which I hope is of some reassurance to the right reverend Prelate the Bishop of Norwich.
The noble Lord, Lord Hunt, asked about free social care at the end of life, as recommended by the palliative care funding review. In the care and support White Paper we stated:
“We think there is much merit in providing free health and social care in a fully integrated service at the end of life”.
The White Paper went on to say:
“We will use the eight palliative care funding pilot sites to collect the vital data and information we need to assess this proposal, and its costs, along with the Review’s other recommendations. A decision on including free social care at the end of life in the new funding system will be informed by the evaluation of the pilots, and an assessment of resource implications and overall affordability”.
The noble Lord, Lord Low, mentioned his wish that the constitution should cover test and treatment options and care planning. On this, as on a number of other issues, including the Liverpool care pathway, I am afraid that time prevents me from replying as I have just been reminded of the clock. However, I assure noble Lords that I shall write on points that I have not covered.
For the future, we have committed to undertake an evaluation of the progress we have made. This will take place in 2013. It will inform us when the introduction of a right to choose to die at home, including a care home, might realistically be feasible. We are currently considering how this evaluation might best be undertaken. I will ensure that your Lordships are kept fully up to date with this work once it has commenced. Your Lordships can be reassured that we remain committed to continuing our work to improve quality and choice in end-of-life care.
House adjourned at 6.27 pm.