Question for Short Debate
To ask Her Majesty’s Government, in the light of the Parliamentary and Health Service Ombudsman’s report Dying Without Dignity, what steps they are taking to ensure that everyone who needs it has access to good palliative care and a level of social care that ensures the end of life is valued.
My Lords, I am sincerely grateful for the interest you have shown in this issue. To be honest, this is not least because it is the first Question for Short Debate which I have asked in your Lordships’ House, and one is always slightly nervous that it might end up being just oneself and the Minister. I am also appreciative because many of you will be here again tomorrow to discuss the Private Member’s Bill of the noble Baroness, Lady Finlay, on the same deeply important subject.
I hope that our debates will be complementary and not duplicate each other, because I want to range somewhat away from a legislative approach and focus more on the cultural and social aspects of palliative care. Indeed, I am particularly pleased that we have been joined by the right reverend Prelates the Bishop of Rochester and the Bishop of Carlisle because I hope they will touch on the area of spiritual care and comfort, which is sorely neglected in many policy discussions. After all, Jesus spoke more of eternal life than anyone else in the Bible.
This is not a fringe issue but very much at the heart of what it means to be sensitive to the needs of the patient and their family as death draws near. Let us be clear from the outset about the profundity of what we are dealing with here, as individuals approach the moment when they are coming to the end of their human existence in this universe. We might be surprised by how many want this to be acknowledged and are grateful when they are offered spiritual help. “Do you want me to pray for you?” is a question that recognises the fears many are feeling about what is happening.
In my preparation for this debate, I talked at length to palliative care clinicians who have been with many at the end of their lives. One said, counterintuitively, that it is not those who have an active faith who appear most in need of spiritual comfort. The last words of one woman who died a very painful and prolonged death from cancer but who was a fervent Christian were, “God is good, all the time”. It is the people who have a nominal faith, who suspect there’s something out there but have never quite nailed what it is, who often seem to feel confused, anxious and abandoned. Having someone there who can help them make peace with their maker—if that is what they are seeking and, obviously, nothing should ever be imposed— can be incredibly beneficial. In our secular society it is all too easy to brush over this, perhaps especially for clinicians who have so many other aspects of patient care on their minds. The World Health Organization’s definition of palliative care refers to the need for,
“impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”.
Earlier this month, the Economist Intelligence Unit placed the UK at the top of its international league table for palliative care, and I do not want to gloss over the very good work that many are doing across the country. However, this Question for Short Debate highlights the Dying Without Dignity report, which summarises investigations by the Parliamentary and Health Service Ombudsman into complaints about end-of-life care. It identifies important themes that I will touch on here.
The number one priority for improvement, because it is the prime mover of palliative care, concerns the lack of recognition that people are dying and the poor response to their needs. For many people that will mean changing the way they are cared for to focus wholly on relieving pain, but also making sure that they have a real choice about where they are going to die, and about how and with whom they would want to spend their time if they had the foreknowledge that death was close. It would enable families to prioritise and mean that symptom control could become the top priority, with care being better planned and co-ordinated. This, perhaps most importantly, can mean that the wish of many patients to die at home can be respected.
Hospice UK believes that the number of people dying in hospital could be cut by 20%. Can the Government do more to help make it possible for more people to die at home, which is the first choice for so many? Sometimes there is only a very short window of time, but being at home for even the last 24 hours can make all the difference.
In one area in the north-east, a clinical commissioning group is contracting with a hospice to support community teams so that district nurses and GPs can ask them to assess patients within two hours. These hospices are acting as one-stop shops in the community—and, if noble Lords will forgive the phrase, “death hubs”. They do not just help those who come through their doors—and only 5% of people in this country die in hospices—but they take their expertise out to people in the area so that people’s closeness to death can be established and proper care can be given.
This approach has kept people out of hospital—always the most expensive place to be—and could be the answer to inadequate out-of-hours services. Even in hospitals, palliative care teams may not come on duty until 9 am, so extremely ill and dying people may be forced to see out the dark watches of the night while suffering in severe pain, with profound nausea and in an agitated state.
I cannot overemphasise the importance of attentive care, not least because basic nursing care can, in some cases, lead to recovery. The inappropriately applied Liverpool care pathway—or lack-of-care pathway—meant that there were many desperately sad cases where people did not receive this. Earlier this year, the Royal College of Nursing and Macmillan Cancer Support reported that some hospitals had not changed their practices, despite the Liverpool care pathway being officially phased out. A distinguished neurologist who first sounded the alarm about the LCP said only a couple of months ago that he regularly hears from relatives who are desperately trying to obtain “active” care for very ill relatives who have been denied it because they are deemed to be dying.
A compassionate approach asks what will make a dying patient make the most of the life remaining to them and how clinicians can work with family and friends to ensure that that happens. Good-quality and honest conversations between GPs and their elderly and sicker patients are essential. Many clinicians who routinely work with very ill patients are reluctant to commit themselves, either to relatives or patients, as to how long someone probably has left, even though this would enable them and their families to make plans. Surely this has a lot to do with our cultural aversion to talking about death.
Your Lordships may have heard of the Dying Matters Coalition’s community initiatives to help people,
“talk more openly about dying, death and bereavement”,
and to make these issues,
“accepted as the natural part of everybody’s life cycle”.
Until I prepared for this debate I had never heard of these, yet the role of the community is incredibly important. When communities, volunteers and families take on more responsibility for care, the costs associated with hospital stays and emergency admissions can be significantly reduced. I therefore have a specific question for the Minister. What, if anything, is the Department of Health doing to create the incentives and support systems needed to encourage more community involvement?
When a dear friend of mine died recently, his loved ones were able to say that he had a comfortable death. I think that that is what all of us would want for those who are close to us, and obviously even for ourselves. I look forward to hearing from the many other speakers in this debate and from the Minister about how we can get this right as often as possible so that a badly handled death becomes almost like a “never event”—incredibly rare because it defies belief that it should happen in a modern and compassionate healthcare system.
My Lords, I am glad to be able to thank the noble Lord for introducing this debate and giving us the opportunity of a pre-run to the Second Reading debate tomorrow. With all his experience, it has been great to hear from him. Having said that, I should give a word of explanation for why I will not be in the House tomorrow. Paradoxically, the reason is that after several years, tomorrow I will complete my service as president of Hospice at Home West Cumbria. Most unfortunately, our annual general meeting is to be held at exactly the same time as the debate, and of course not only am I expected to preside at that meeting, I want to do so.
What have I learnt from my years as president? They have been fascinating, cheering and, while very challenging, deeply reassuring. One thing I have learnt is that death, a safe and secure death, is very much the responsibility of us all; it cannot be delegated to anyone. We all have our part to play in creating an atmosphere of support for the feelings and morale of everyone concerned. That covers the staff, the volunteers, the supporters and the wider public. What is great about the Hospice at Home charity in West Cumbria is that the staff are all volunteers who work way beyond what could be expected from them in a contract. But I have also learnt that the volunteers are determined to be professionals. They want to maintain the voluntary spirit, but they want all the time to train and improve so that they can make the best possible contribution. Given the opportunity, members of the public love to feel a sense of responsibility. They want to feel that the hospice is their hospice: it belongs to them. The one point I wanted to get over is that this movement depends upon an awful lot of people.
It also depends upon a dynamic working relationship between the hospice and the health service. There has to be a great deal of flexibility and vision. I hope that a message can go out from the leadership of the health service that this is a good thing because it helps the health service to do its job properly. We have had very good experiences of this in West Cumbria and I want to commend it to the hospice movement throughout the country. It also helps to ensure that people really are striving for the best standards in palliative care. About the care, commitment and love there is no doubt, but some careful training and preparation is needed for palliative care, and one wants to make sure that it is happening all the time and that it is available to all the volunteers so that they can do their work properly. From that standpoint, I endorse what the noble Lord said about it being essentially a community affair. Both the community and the cared for can derive great joy and benefit from that spirit.
My Lords, in preparing for this debate, I talked to a friend who had recently been affected by the shortcomings in end-of-life care. Her mother did not have an identified terminal illness, but deteriorated slowly from multiple conditions. She had several stays in hospital and had agency carers at home. She had several assessments from social workers and occupational therapists, but no longer-term planning was done for her inevitable future decline. Care was reactive to the immediate situation only.
In her final few weeks she deteriorated rapidly and her carers struggled without additional equipment, but it took several days to get further assessments. By the time the occupational therapist arrived to assess the suitability of her room for a bed with a hoist, which would have allowed the carers to handle her, the family were at crisis point. My friend, at her wits’ end, tried to get the bed, but it was a Friday morning and she was told that no equipment could be delivered before Monday. By the evening, her mother became unconscious in her chair. The out-of-hours service suggested an ambulance to take her to A&E. The family declined. They were then on their own. My friend’s mother died during the night, but had she survived into the weekend it would have been almost impossible to care for her properly at home.
My friend’s reflections from this episode are as follows. In contrast to the planning following a terminal cancer diagnosis, from which we need to learn, there is a lack of co-ordination and forward planning for the care of elderly people with multiple conditions. Home assessments are time consuming. Using modern technology such as iPads and Skype and a simple assessment sheet, any sensible person could have assessed the room and had direct contact with professionals for instant advice, rather than waiting for a home visit. Essential equipment should be available in much fewer than four days. You can now order almost anything from Amazon online and have delivery the same day.
There needs to be greater support for those caring for the dying person, especially in the evening, the night or at weekends. No professional or other care support was offered to my friend in the final few hours of her mother’s life, so it is not surprising that many people do not feel competent to care at home, even though they do not want their loved ones to die in hospital. If someone cannot be cared for at home, transfer should be directly into a hospice, rather than admission through A&E to a bed on a busy acute ward.
In the July 2014 report Choice in End of Life Care it was recommended that each person approaching the end of life should have a fully interoperable electronic health record to help to ensure their preferences are recorded and shared with everyone involved in their care, and that people should be able to access and add to their own records. Will the Minister say what progress is being made towards having this in place by 2020?
My Lords, I begin by welcoming the report from the Economist Intelligence Unit that was released earlier this month. As my noble friend Lord Farmer pointed out, along with the WHO, it puts the UK ahead of every other country in the world for providing end-of-life care, as it did in 2010. The report praises the “strong hospice movement” in this country. The work of our hospice movement is something for which we can and should be very thankful. I feel passionately about palliative care. Indeed, I have raised it on several occasions in this House. It is important to say that, as a Christian, I believe that every single human being has an intrinsic value and the right to live the life that God gave them, no matter how old, ill or disabled that person may be. God gave us that life, and I believe that God has the ultimate say in when it will end.
Dame Cicely Saunders, who is widely regarded as the founder of the modern hospice movement, shared this Christian outlook. She became convinced of the paramount importance of combining excellent medical and nursing care with holistic support that recognises the practical, emotional, social and spiritual needs of those who are dying. I constantly quote the second great commandment, where we are commanded by God to love our neighbour, and that means in whatever circumstances they find themselves in. Dame Cicely also used another expression, which was quoted at her memorial service:
“You matter because you are”,
who you are,
“and you matter to the last moment of your life. We will do all we can not only to help you die peacefully, but also to live until you die”.
It is often said that a society is measured by how it treats its frailest and most vulnerable members. I want the UK to be a nation that prizes every citizen, not one that treats those coming to the end of life as useless and a waste of resources. I very much welcome the overwhelming rejection of the assisted suicide Bill last month by the other place, and I trust that the vote settles the matter for a long time to come. If assisted suicide or euthanasia were ever legalised, many people would be put under pressure to end their lives for fear of becoming a burden upon friends, family or the healthcare system. Instead, as I have said before in this House, the really humane solution to suffering lies in improving palliative care, not in helping people to kill themselves, as some would have us think.
There is no doubt that much more work has to be done to make our provision of palliative care better, especially in the NHS. The World Health Assembly resolution last year urged its 194 member states to recognise the importance of good-quality palliative care and to ensure its funding. End of life care may be expensive, but the reality is that almost no patient is beyond the help of pain-relieving medicine. If we want to be a nation that truly values every citizen, not just because of their contribution to society, then good care at the end of life is imperative. It can help people who are experiencing physical or mental pain to see that they are valued and that their life is worth living.
My Lords, today’s debate, for which I am also most grateful to the noble Lord, Lord Farmer, has prompted me to take a fresh look at some of the numerous documents on palliative care that have been produced over the past two years, including of course the ombudsman’s report, Dying Without Dignity. As I read the documents, I was struck and impressed by their general agreement that palliative care at the end of life involves more than simply the relief of physical pain, crucial though of course that is. Suffering is not always the same as pain and it is often more difficult to ease, which is why the word “holistic” is often used to describe the kind of care that is needed. I cite as an example the NICE quality standard which is regarded by NHS England as,
“a comprehensive picture of what high quality end of life care should look like”.
In particular, as we have been reminded by the noble Lord, Lord Farmer, reference is made to spiritual and religious support not only for patients but for relatives, carers and staff. Such support is an essential element in end of life care. Religious needs are those experienced by people with specific beliefs, such as Christian, Jewish or Muslim. Spiritual needs are more generic; they are experienced by everyone regardless of belief, and since the early 1990s there has been a growing recognition of the importance of spirituality in palliative care, not least in most of our hospices.
So, at a time when some are questioning the need for healthcare chaplains, I suggest that recent reports actually make a compelling case for their retention. Their special training and expertise equip them to offer compassionate spiritual care to everyone, as well as religious care to those who need it; and “everyone” includes relatives and staff. Compassion is something of a buzzword in the NHS these days, and it has very close links with spirituality. For that to be effective, though, it is essential that chaplains should be included in end of life plans for patients and are treated as full members of multidisciplinary care teams. In many trusts that is already regarded as standard practice. Last week, for instance, I was talking with a palliative consultant who is the end of life lead in a large hospital in the north of England. She mentioned the electronic order sets which automatically trigger requests to the chaplaincy team and to the end of life nurse. That, she said, has made an amazing difference, and has meant that every patient dying in that trust has access to a chaplain. There are also a growing number of chaplains attached to health centres who are able to care for dying patients in the community, which, as the noble Lord, Lord Farmer, reminded us, is where most people want to die, but where at present 50% do not.
However, that is not a universal picture. As the ombudsman’s report indicates, the quality of end of life care is patchy, and that is true spiritually as well as physically. As we have been reminded, there will of course be a further opportunity to consider this tomorrow, but meanwhile I am very grateful for this opportunity to pay tribute to the contribution made by chaplains and their army of volunteers to end of life care in this country, not least by promoting compassion and respecting the dignity of everyone involved. So, may I ask the Minister whether he agrees that it is desperately important that we should take their work seriously if the holistic care we offer to all is not only to remain at the top of the league, but also to go on improving in the years to come?
My Lords, sadly, the ombudsman’s report documents many instances of poor care, poor communication, a lack of active review of cases and inappropriate discharge from hospital. However, I take issue with a statement in the conclusion:
“How we die is part of the core business of the NHS”.
As one who practises medicine and surgery I do not recognise this, as the core business for me was to save lives and prevent death. Death and dying should ideally take place in quiet surroundings with people we love and care for around us. That is at home or in a hospice, as has already been mentioned. We should do more to increase financial support for the nation’s hospices. What are the finances? In 2010-11 we spent £460 million on adult palliative care and end of life care, but there are wide variations with some areas spending £186 per death on specialist care and others £6,213 per death—a wide variation, as I have said. Some 61% of the PCTs at that time spent less than £1,000 per death. Will the Minister say what the latest costs are and whether the variations have been ironed out?
Another issue is that of training for all healthcare workers—doctors, nurses, care assistants and even porters—in dealing with patients who are terminally ill. For doctors, breaking bad news can be a challenge for many. The Royal College of Surgeons in its MRCS examination has a communications bay marked, “Breaking bad news”, where we use actors to simulate patients or relatives so that we can put the trainees through a process where they have to break bad news to patients and react when the patients react adversely. It is important that this is not limited to examinations but is refreshed as part of continuing professional development.
Finally, all of this care must be delivered on a seven-day basis, and preferably with access to specialist palliative advice 24/7. The challenge is how to achieve this without the introduction of a seven-day service, and we know the deliberations that are going on at the moment vis-à-vis the junior doctors’ contract. It was a common occurrence to have dying patients referred by their GPs for admission on a Friday. I recognise that many of the people who were admitted on a Friday would subsequently die. So when we are considering mortality at the weekends, it is important that we bear this in mind. As has been said, one of the drivers for seven-day working is to try to reduce mortality at weekends. Hospital admissions in the last year of life cost the NHS £1.3 billion for adults and £18.2 million for children. Transferring some of these costs to the community and commissioning more hospice care may not only generate savings, but provide for the kind of death that 74% of patients desire. But as the right reverend Prelate said, 58% find that they end up in hospital. I therefore support the words of the noble Lord, Lord Farmer.
My Lords, end of life care must encompass body, mind and spirit. Minimising suffering in the final days, weeks and months of life once a cure is no longer possible is not just a medical task, it is also the chance to support each person to let go of life and experience a sense of completion, which may require support with physical, psychological, cultural and/or spiritual concerns.
If a palliative care service is to be available in every kind of healthcare setting seven days a week, there will need to be changes to the current system. Continuity of support will also be an important ingredient in the recipe, just as it is in the support needed at the beginning of life. In birth and in death, there is a comfort that comes with knowing that the person who is caring for you knows what is important to you. The Liverpool care pathway was an attempt to standardise and improve end of life care. The intention was good but, as we have seen time and time again both inside and outside medicine, where initiatives are not funded properly and are without sufficient training and supervision, protocol-based practice becomes a tick-box exercise and stifles creative thinking. End of life care needs to be flexible and creative. It is about responding to the needs of an individual. Some of those needs will be unexpected, requiring access to 24-hour support, be that telephone advice or access to a doctor or nurse.
There is no doubt in my mind that accessible and equitable palliative care services are required across England, just like other services that are fully NHS-funded. This morning I received some advertising material in the post from Macmillan. It made the point that in the south-east of England, it has only enough nurses to help around 25% of people with cancer. It is raising charitable money to subsidise the care provided for people with cancer at the end of their life.
Wales is a trailblazer and is already providing seven-day specialist care services, but it is critical that geographical equity also translates into equal access for all individuals in our society, not just for those who are better informed or who can shout the loudest. People with learning disabilities, children, individuals with severe mental illness and all those who do not at first come to mind when thinking about someone who is dying need to be explicitly considered. I was teaching some GPs in a hospice, one of whom said, “But people with learning disabilities don’t get cancer, do they?”. There is still quite a lot of ignorance, as the Minister is well aware, and the needs of some people in society are overlooked. Will he reassure us that the needs of these groups will also be taken into account in any new health policy about end of life care?
My Lords, I understand that the noble Lord, Lord Suri, is not able to be present for this discussion, but I promise not to extend my contribution by the minutes thereby freed. I am grateful to the noble Lord, Lord Farmer, for initiating this debate, and I apologise that I am not going to touch on matters that are directly to do with spirituality. I shall leave that to those who have done so—my right reverend friend and others—because I want to focus on one particular aspect of end-of-life care: what goes on in Her Majesty’s prisons, for which I am bishop.
The Justice Committee of the other place produced a report at the end of the previous Parliament on older prisoners. It highlighted a number of matters associated with an ageing prison population, of which palliative care is one. I am glad to say that that report had a generally positive response from the previous Secretary of State, and I have every hope that the current Secretary of State will build upon that.
This is not just about older prisoners, because the health profile of offenders is such that we have within our prison estate a fair number of younger prisoners who are in the end-of-life phase, so it is a matter of significance within the whole of the prison estate. As I visit prisons fairly regularly in my role as bishop to Her Majesty’s prisons and talk to people in the sector, it is clear to me that this is an area of growing concern within the prison estate and that this concern is shared between the Ministry of Justice and the Department of Health. There is some good work going on. I have come across good involvement of voluntary sector agencies, among them Age UK and Macmillan, working across and through the prison gate in various ways. There is also the work of healthcare departments in prisons—I speak as the spouse of a former head of healthcare in the Prison Service—and the chaplaincy, alongside their regular work, is an important aspect of this.
We now have 10 palliative care suites in prisons up and down the land. Last night I was speaking to the governor of a prison about the importance of the palliative care suite in his prison. This leads me to ask the Minister two questions. First, do Her Majesty’s Government intend to report at some stage on progress arising out of the report into older prisoners and the issues that arise as a result of an ageing prison population, and are some of the things that the previous Secretary of State for Justice indicated might happen indeed happening in response to that ageing prison population, with palliative care as one of those elements? Secondly, do Her Majesty’s Government have plans to establish further palliative care suites within prisons such that a sufficient number of prisons have end-of-life care available to prisoners who need it, bearing in mind that for many of our older prisoners, sadly, prison is the place that they regard as home?
My Lords, it is with great pleasure that I offer my support to the noble Lord, Lord Farmer, and thank him for initiating this very interesting debate. Access to the best possible care at the end of life is surely the test of any civilised country and the value it puts on the life of its citizens.
I, too, pay tribute to the splendid work of the hospice movement. My own dear mother died in the Bournville hospice in Birmingham and it was then that I learnt just how important and effective good palliative care can be. Dying without pain and yet retaining full consciousness and the ability to speak to one’s loved ones, as she did, is truly a priceless gift. It gave her peace as she left us and eased the pain of loss for those of us who loved her. As the right reverend Prelate the Bishop of Carlisle said, good palliative care in a Christian hospice such as the one where my mother died deals with much more than physical pain; it deals with the spiritual issues that the dying person is still wrestling with. I also very much welcome the growth of the hospice at home movement and the wonderful work of Macmillan and Marie Curie nurses, which allows people to die with good palliative care at home.
I wonder why the gift of good palliative care is too often denied to those who die in hospital. Too often proper pain relief is not given, or given in such a way that the patient is at best semi-conscious. A death like that lacks dignity and causes lasting painful memories for the bereaved. I cannot see any major obstacles to providing the training and tools for all doctors and nurses, and all hospitals, to raise standards of care for the dying. It is a case of asking not for more money but simply for a change in training and in attitude.
I understand what my noble friend Lord Ribeiro said. Hospitals are about saving lives, not losing them, and in the long term I would love to see a move away from dying in hospital to dying at home or in a hospice. But in the mean time it is apparent that many of us will end our lives in hospital. So while we work to change this, we cannot delay the work of changing the experience now of those who will still face a hospital death.
I have been very moved by the briefing that most of us have received about the needs of children with fatal illness. I have huge respect for the doctors and consultants who must deal daily with such tragic cases, and they need every ounce of support and training to enable them to give the best care to their young patients. Every paediatrician and paediatric nurse should have specialised knowledge of palliative care as, sadly, all will encounter children who cannot be cured. I know that for many who work with children, death is seen as a dreadful failure. It can, however, be turned into a triumph of the human spirit if those last months and days are made into a rich, pain-free cherishing of a young life, every moment of which, to parents and siblings, is, and remains to the end, infinitely precious.
The way in which we die is perhaps the most important part of the way we live. I hope that every action of those who run the health service and the related care services will demonstrate the value of every life to the end. No better way can be given than by ensuring that universal palliative care is available to all.
My Lords, I too congratulate the noble Lord, Lord Farmer, for his immaculate timing in having this debate and for his very wise words. There is little doubt that hospices do a wonderful job, and I for one am lost in admiration for the way they go about caring for dying patients. However, hospices care for only about 3% or 4% of dying patients, and more than 50% finish up in acute hospitals. These hospitals often do a very good job, but they have some problems. For one, they have young doctors and nurses who are ill prepared to deal with death. Too often they have not yet gained the confidence which is needed to give the care and compassion which are so vital. On top of that, they have to deal with their own sense of inadequacy when faced with dying patients. It is not easy. It is no help that they are distracted by having to rush around to deal with seriously ill patients and that they have to focus on saving someone’s life rather than helping someone else to die.
None of that is an excuse for the failing standards, and it is not possible to read the ombudsman’s report with any degree of equanimity. Indeed, as someone who has spent much of his life trying to educate medical students and train post-graduates in the proper practice of medicine, I feel deeply ashamed. As an aside, I should say that there is a peculiar fear that giving adequate doses of morphine for pain relief is somehow dangerous. The correct dose of morphine is that which relieves a patient’s pain, and there is no excuse for withholding it when it is needed. I feel some sympathy for Woody Allen, who said, “I don’t mind dying, but I don’t want to be there when it happens”.
Despite the fact that there is absolutely no shortage of guidelines on how to care for the dying, there is still a huge gap between what we can do and know should be done, and what is actually achieved in too many places. First, it is clear that many patients would prefer to die at home, as many have said. It is obvious that too few social services and primary care facilities can cope with the heavy demand that this sort of care puts on them. Hospices at home can be very successful—as they are in several places, as the noble Lord, Lord Farmer, and my noble friend Lord Judd mentioned—but we need to provide more resources to spread that good practice.
Secondly, we must face an obvious lack of the leadership that is needed in hospitals to ensure that palliative care services are provided in a timely and effective way. We need someone with clout to take responsibility to oversee this service, somebody everyone knows and can turn to when needed. Thirdly, we must place much more emphasis on education and training. This is an area of clinical practice which you cannot just pick up as you go along. You need high-quality training by experts, and it is good to see that tomorrow’s Bill emphasises this. Finally, we have to make sure that CCGs, trusts and those with the money take responsibility for these services being funded, delivered and monitored. Are the tariffs for palliative care adequate? Are these services monitored, and by whom? Many questions are being raised in this debate, and we have to answer them if we are to be judged to be a society that cares for its most vulnerable citizens. I very much look forward to the Minister’s response.
My Lords, first, I congratulate my noble friend Lord Farmer for raising this debate. As my noble friend Lady Perry of Southwark said, the way we die is as important as the way we live. Nothing can be more important. Dying Without Dignity, which was produced by the Parliamentary and Health Service Ombudsman, shed light on a number of cases which were unacceptable and quite shocking, but we should take some comfort from the fact that we have a high degree of transparency. We are prepared to reveal things when they go wrong, and only by doing so can we learn from them and do better.
There are 350,000 expected deaths in England each year. Of this group, many people will require high-quality generalist end-of-life care, and 170,000 will require specialist palliative care. Many of these people receive good care at the end of their life. The fact that there are 12 unacceptable instances in the PHSO’s report should not lead us to believe that that is normal for most people. The most recent National Survey of Bereaved People (VOICES) report showed that three out of four people—75%—rated the overall quality of end-of-life care for their relative as outstanding, excellent or good. I accept that that 75% figure means that 25% of people did not have a good end of life.
Research by the Economist Intelligence Unit, which noble Lords have referred to in this debate, showed that the UK came out top of all 80 countries that were surveyed. Sometimes I feel that those of us who work closely with the NHS tend to beat ourselves up a bit more than we should. However, the fact is that end-of-life care is incredibly difficult. It is very difficult to manage; each case is very different. Therefore, that we come top in that world ranking is very important. One interesting part of that report is that,
“The biggest problem that persists is that our healthcare systems are designed to provide acute care when what we need is chronic care. That’s still the case almost everywhere in the world”.
The CQC has recently begun inspecting hospices. The chief inspector for the CQC said:
“I know from what my inspectors are finding”,
“hospices provide amazing care and support for people at the end of their lives”.
More than 90% of hospices that it has inspected have been rated as good or outstanding.
It is quite easy to think that all deaths in hospital are bad and that somehow all deaths in hospital should be moved to a hospice or to people’s homes. It may be true that that is where most people want to go. However, I can give my experience of my mother, who died quite recently after 14 days in hospital. I can hardly imagine how someone in her state could have been treated at home. She needed constant changes of her oxygen levels, she had to be switched from dry to wet, and her pain relief—diamorphine—had to be changed constantly. You could have that care at home, but it would require 24/7 care at home from trained nurses with a doctor on call. My noble friend Lord Ribeiro referred to seven-day care, and there was seven-day care. In many of our hospitals we provide seven-day care. She had seven-day care with a senior consultant present throughout her stay, including over the two weekends she was there.
Last year, we introduced the five priorities for the care of the dying person to embed these principles in all end-of-life care settings, and we have seen widespread engagement from clinicians across the system to make those priorities a reality. This new approach replaced the use of the Liverpool care pathway, which was comprehensively phased out in July 2014. I echo the words of the noble Baroness, Lady Hollins, who said that many nurses and doctors implemented the spirit as well as the letter of the Liverpool care pathway. Of course, she is right that protocols and tick-boxes can sometimes drive the spirit out of what was originally intended. However, I know from experience that many nurses—Macmillan nurses and palliative care nurses—used the Liverpool care pathway in the way that it was originally intended to be used. On the other point that the noble Baroness raised about inequalities—she referred to people with learning difficulties—the CQC will undertake a thematic inspection that will report next year to look at inequalities and variations in the way that end-of-life care is administered, so she may wish to speak to the CQC and contribute to that.
I know that spiritual concerns, as raised by my noble friend Lord Farmer and other noble Lords, are particularly important to people at this time in their life, and the priorities reflect that importance. They rightly emphasise that care planning at the end of life must take account of the dying person’s spiritual and religious needs as well as their physical, emotional and psychological needs. If we are honest, we do not do dying well, but that is because it is extremely difficult to do well. It raises all kinds of emotions, such as guilt, as well as the sadness that is inevitable around a person’s death.
The right reverend Prelate the Bishop of Carlisle raised the incredibly important work that chaplains do in hospitals, and I agree with him wholeheartedly. Not just chaplains but the whole mass of volunteers who work with them give comfort and support not only to relatives and those who are dying, but also to the staff in hospitals who have to work closely in very distressing circumstances.
I would also like to highlight the work being done by the Dying Matters campaign, which focuses on raising awareness of issues around death and dying and encourages people to plan earlier and think about what is important to them at the end of life. I wonder how many people in this Room have realised only when someone close to them has died that there were things they wanted to say, but never said, and by then, of course, it is too late. I suspect it is part of the human condition.
We know high-quality care relies on good care co-ordination and planning tailored to individual needs and preferences. Electronic palliative care records, “e-packs”, which the noble Baroness, Lady Walmsley, referred to are a very important part of that, so that when someone has expressed a wish it is recorded and does not have to be repeated umpteen times to paramedics, A&E doctors, geriatric doctors and the like. I would like to come back to this in more detail if I can, but I am told that some 70% of CCGs have now got this programme under way.
I am also encouraged by CQC’s new approach to inspection and its welcome focus on end-of-life care. All CQC inspections of hospitals include looking at end-of-life care. Already a number of care providers have been inspected, including hospitals, hospices, care homes and GP practices. Not only has this identified areas for improvement, but it also allows CQC to highlight and celebrate excellent care where it exists. I reiterate that transparency is a very important part of the approach of this Government to all aspects of healthcare.
My noble friend also raised the important issue of guaranteeing access to a level of social care that ensures that the end of life is valued. We recognise the vital role that social care support plays for many people approaching the end of life and their families and carers. Timely access to a high-quality and responsive social care system is critical in supporting people to die in their setting of choice at the end of their life. It also helps to avoid traumatic and unnecessary admissions to hospital. Interestingly, the Economist Intelligence Unit report says,
“People have woken up to the fact that we may be able to save money overall to society by investing in dying better”.
We should perhaps not be talking about saving money. Nevertheless, it is often not only better for the individual, but can be cheaper if we provide better care outside acute hospitals. That is true, of course, in the treatment of many chronic conditions as well.
We want to give people more control over the health and care services they receive, including end-of-life care. We have been promoting greater personalisation in how services can be accessed. This means building support around individuals and providing them with more choice, control and flexibility in the way they access and receive care and support.
Once again, as I conclude, I thank my noble friend for highlighting this vital issue. I think there is a huge measure of cross-party agreement in this area and I look forward to discussing it further in the debate tomorrow with the noble Baroness, Lady Finlay, who is in the Room today. I end by saying that the Government are fully committed to improving standards across palliative and end-of-life care services.