Access to Palliative Care Bill [HL]
(9 years, 1 month ago)
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Baroness Finlay of Llandaff (CB)
My Lords, I declare my interests as palliative care lead for Wales, chair of the National Council for Palliative Care and chair of the National Mental Capacity Forum.
The only certainty is that every one of us will die. Nothing else in healthcare in the UK applies to 100% of our population. About three-quarters of us will need palliative care input at some level when we are dying. The UK seems to be a good place to die. It was ranked top of 80 countries in the recent Economist Intelligence Unit report. We can be unashamedly proud of our hospices and palliative care services. I am grateful to them all for their support of my Bill.
Let me explain why my Bill is needed, what it will do and why it will not incur costs but will free up resources in the system. The Parliamentary and Health Service Ombudsman’s report, discussed yesterday in the excellent debate of the noble Lord, Lord Farmer, shows all too clearly that provision of palliative care in England is unacceptably patchy. The Minister spoke of our transparency, and although he cited that many report good or excellent care, he admitted that a quarter of bereaved relatives reported that end-of-life care was not good enough. The memory of that experience remains in the minds of bereaved relatives and can blight their lives, particularly if they are children.
The ombudsman reported that in its casework:
“End of life care is, sadly, a recurring and consistent theme”.
Inadequate care is not a few isolated incidents. National audits by the Royal College of Physicians and Marie Curie, and the recent House of Commons Health Committee report on end-of-life care, and many others, all say the same: many places provide excellent care but provision is patchy and varies in quality, accessibility and reliability.
In response to the report More Care, Less Pathway, the Leadership Alliance for the Care of Dying People set five priorities of care in its report One Chance to Get it Right. The Bill is a chance to finally get it right for all. It meets the recommendations that appear consistently in reports, in particular the Health Committee report, What’s Important to Me: a Review of Choice in End of Life Care, which is awaiting the Government’s response, Ambitions for Palliative Care and End of Life Care, from a wide coalition of 27 lead providers and charities, published just this month, and the ombudsman’s report. It would narrow the widening gap in hospice provision between affluent and poorer areas. It would ensure access to hospice care for those with non-cancer diagnoses.
The NHS Confederation describes the NHS as “at a cliff edge” and points out the need to transform the way that the health service provides care. David Behan, reporting on the state of health and social care in England, points to the need for more collaboration between organisations and services; to evidence that person-centred care is better for the individual and can be more economical for service providers; and that safe services require the right staff and skills mix.
We all know what to do—we have strategies, working parties and reports galore—but we are just not doing it all the time, everywhere. Why not? The demands on clinical commissioning groups are great. They are well intentioned, but drowning. They need a clear, simple template to bring up the standard of services. Importantly, patients and their families, faced with all the fears and uncertainties of discovering that this is likely to be their final illness, need and deserve the assurance that their care will be good and that they will not be abandoned or failed in their hour of need, wherever they are, whatever the time or day of the week.
In 2008 we had the End of Life Care Strategy for England and a similar national strategy in Wales that we implemented pan-Wales. Both were reinforced by the NICE guidance on what high-quality palliative care should look like, including that patients’ physical and psychological needs are safely, effectively and appropriately met at any time of the day or night, including access to medication and equipment, and that those whose needs may benefit from specialist palliative care are also offered it at any time of the day or night.
In Wales, we developed a funding formula for palliative care services in 2008 to correct the wide variation in availability. We developed seven-day services, with specialist advice to any healthcare professional at any time of the day or night. We set a benchmark of provision of one actual bed, or a virtual hospice-at-home bed, per 15,000 population; a standard of responding rapidly to urgent referrals; out-of-hours “just in case” boxes for medication for patients at home; a single core palliative care IT record; and staff education initiatives. I am not claiming that we are perfect, but we know that patients consistently rate their experience of care from palliative care providers in Wales as over 9.5 out of 10 across domains of dignity, being listened to, having their concerns addressed and timely care. Indeed, scores of seven out of 10 or below set an alert.
In preparing for today I sent a freedom of information request to all 209 clinical commissioning groups. One hundred and twelve gave information about the number of beds they commission. Benchmarking against Wales on a population basis, 49 have fewer dedicated palliative care beds than Wales and 66 have more. The beds are probably there already, overall. Subject to data validation, clinical commissioning groups’ spend ranged between £15 and £10,504 per patient with palliative care needs, with an average spend of £886 per patient.
Regarding levels of services commissioned, there was wide variation—a true postcode lottery. Some 78% commission 24/7 specialist palliative care advice, but what happens to patients in other areas when staff get stuck and do not know what to do? Only 29 clinical commissioning groups knew how many people they had with palliative care needs, although the Palliative Care Funding Review showed that 0.75% of the population have palliative care needs at any one time.
Narrative from the bereaved and professionals, reported in Every Moment Counts, highlights failures in co-ordinating and personalising end-of-life care, particularly pain relief. Such care is, and should be, delivered by and large by generalists, but often they lack training and confidence to open up difficult conversations, to know how to respond appropriately to distress, or to manage pain urgently.
Actions for End of Life Care set policy aims for 2014 to 2016. It is packed with words such as “promoting”, “supporting”, “facilitating partnership” and “working together”. Its aims are laudable and it would deliver better care if they were all fully implemented. But we do not live in an NHS of plenty; we hear daily of cash-strapped services, of deficits, of failing to meet priorities. There are 15 million people living with one or more long-term conditions. Their admission to hospital is often avoidable.
Cicely Saunders Institute research showed that early integrated specialist palliative care significantly improved quality of life for patients with severe respiratory disease at no additional cost. Sue Ryder’s Bedfordshire partnership provides out-of-hours support, resulting in lower emergency hospital admission rates.
Cancer patients receiving palliative care are half as likely to attend the emergency department in the last month of life. Those with pain and poor care are more likely to have multiple emergency department visits in the last two weeks of life. The Nuffield Trust estimates that over that last three months of life the cost of end-of-life care in a hospice is around £550 per person, compared with £4,500 per person in a hospital—an increase largely due to emergency admissions that could have been avoided.
A new palliative care service for people with severe multiple sclerosis improved pain and care-giver burden, at a total cost saving of almost £2,000 per patient over three months. Coordinate My Care, developed by the Royal Marsden, has ensured that three-quarters of those who died while on the programme did so in the place of their choice, with an average saving of more than £2,000 per person.
Let me explain what my Bill would do. It would ensure that wherever a dying person is, whatever the time of day or night, whatever day of the week, they can receive high-standard care. How would it do this? It would do so by ensuring that commissioners commission a level of service for their populations to meet need. If you are a patient with complex needs and things become difficult, you cannot access a specialist service if it is just not there. You cannot expect staff to meet your needs if they do not know what to do and have no one to ask for help. You cannot access medication at home if your needs change, if there is no local way to get that medication urgently, and if the out-of-hours provider does not carry even the basics because they will not pay £4,504 to be licensed to hold an emergency stock. If you need equipment, you cannot wait days or weeks for it. Electronic palliative care communication systems promote better co-ordinated timely care, avoiding inefficiency and duplication. They need to be everywhere. My Bill would ensure co-ordination so that help is accessible, efficient and can meet needs. It is often said that good care costs less than bad care. Sensitive attitudes and caring behaviours by staff cost nothing, but they transform the quality of the patient and family experience.
Health Education England has indicated that it would welcome this Bill to ensure core education and training everywhere. Currently, only one-fifth of trusts have mandatory training in care of the dying. And research is essential to drive forward improvements; it is not a bolt-on.
There are around 500,000 deaths a year in England. Although three-quarters of people have an expected death, the way the deaths of the other quarter are managed can be improved by lessons from palliative care being applied to ways that family members are informed and supported, and how the critically ill and rapidly dying patient is managed.
The stories of people dying at home in distress through failures of commissioning have to stop. We know what to do but we are just not always doing it. At the end of the day, no amount of nice words will make commissioners ensure that they have in place the services to meet their population’s needs.
Why legislate for this and not for other services? It is simply because everyone will die. No other area of healthcare has 100% certainty, so this will not set a precedent. This is the time to make the good care of everyone who is dying a given. I beg to move.
Baroness Hollins (CB)
My Lords, I congratulate my noble friend on introducing this very important and timely Bill.
I will speak mainly about mental health and well-being for people who are terminally ill. To achieve a comfortable death, it is imperative that psychological distress is understood and attended to as well as treating any physical symptoms. Parity of esteem for physical and mental disorders was mandated in law for the first time in the Health and Social Care Act 2012 and it applies at the end of life, too. Depression, which can be defined as pervasive low mood lasting more than two weeks, is a common co-morbid condition of pain and advanced illness. A systematic review of the evidence in 2006 found that up to 80% of people with cancer experienced clinically diagnosable depression, as did up to 70% of people with chronic lung disease. A considerable proportion of such mental illness remains undiagnosed and untreated, thus pointing to the need for an integrated psychiatric service in hospice and palliative care teams. Another study published in 2014 found that out of 444 advanced cancer patients in the study, 160 patients reported moderate or severe depression, often linked to anxiety. Of these 160 people, 56% showed a significant improvement in their anxiety or depression after just one supportive palliative care consultation.
Three barriers to excellent psychiatric care at the end of life have been described by the Academy of Psychosomatic Medicine: first, the challenge of diagnosing mental disorders in the presence of serious physical illness; secondly, confusion about the threshold of clinical significance—when is distress part of a process of normal psychological adjustment and when is it pathological?—and thirdly, the commonplace but unnecessary nihilism about the potential benefit of treatment for mental disorders at the end of life.
I suggest that psychiatric teams with a specialist understanding of mental health in palliative care have a crucial role to play in the provision of truly holistic end-of-life support. Research points to stigma as a barrier to diagnosing depression. One paper reported that,
“patients were ashamed to admit to psychological symptoms of depression because of their fear about the stigma attached to it”.
Stigma leads to both a reluctance by individual patients to seek help and a reluctance by healthcare professionals even to broach the subject. It will be through effective training in communication and in diagnosing mental illness that these barriers will be broken down, and psychiatrists need to be involved in supervision and reflective practice with the multidisciplinary team.
The Oxford Handbook of Psychiatry in Palliative Medicine, published in 2009, described the multifactorial function of the psychiatrist: first, as a clinical consultant contributing to direct patient care, liaising with other palliative care clinicians and working with families; secondly, as an educator to leverage knowledge about mental health issues and teach communication skills when difficult dynamics are involved; and, thirdly, as an investigator undertaking and supervising research about what works best at the end of life.
My noble friend’s Bill explicitly includes a clause specifying that Health Education England should ensure that health and social care providers deliver good- quality training to all healthcare professionals in four specified fields related to palliative care: pain control; communication skills; the appropriate use of the Mental Capacity Act; and how to support families and carers of people with palliative care needs. I would ask my noble friend if the Bill’s provisions adequately include a mandate for training in mental health and for the provision of specialist mental health care, and whether her intention would be to emphasise the importance of parity for mental and physical health care in guidance.
The Bill is not just about care for the dying person. The legacy of a traumatic death can have lifelong negative repercussions for those left behind. The Childhood Bereavement Network estimates that around 33,000 children under 18 are newly bereaved every year. Being open about death and allowing them to understand what is happening can reduce otherwise negative sequelae. My own research with Dr Abdelnoor found that, compared with their peers, parentally bereaved children scored an average of half a grade lower in their GCSEs. Other researchers found that bereaved children are one and a half times as likely to have a mental disorder and three times more likely to have physical health symptoms in the clinical range.
As I said in this House yesterday, access to palliative care services does not require just geographical equity but equal access for all individuals in our society. People with learning disabilities, children and individuals with severe mental illness may all need reasonable adjustments to be made to their care and treatment. My research with people with learning disabilities has shown that collaboration between services is the most effective way to ensure that they receive satisfactory palliative care. The problem is not people’s inability to communicate but our inability to understand their way of communicating. We know that in general health services, people with learning disabilities die earlier than they should and face disproportionate barriers to care. Unsurprisingly, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities found problems in advance-care planning, poor adherence to the Mental Capacity Act, and carers not feeling listened to. These areas are also identified in the Bill as needing improvement in end-of-life care. If we could get it right for people with learning disabilities, we would probably get it right for everyone.
I was grateful to the Minister for his response to yesterday’s Question for Short Debate in the name of the noble Lord, Lord Farmer, and his announcement of the planned thematic review by the CQC of inequalities in end-of-life care. Such initiatives will help improve services but legislation is needed to make a significant step change in the availability of adequate palliative care services. I support the Bill wholeheartedly.
Baroness Walmsley (LD)
My Lords, I, too, congratulate the noble Baroness, Lady Finlay of Llandaff, on introducing this Private Member’s Bill. Its admirable intention is to ensure that everyone receives the best possible care when they are at their most vulnerable, usually towards the end of life.
There have been a number of reports in recent years highlighting the failings in palliative and end-of- life care. Notable themes have included: serious concerns about staff numbers and competence; poor communication between clinicians and patients, their relatives and carers; the lack of a named senior clinician accountable for end-of-life care; poor access to specialist care out of hours and at weekends; and inadequate care of patients in their own homes. In addition, we have received numerous briefings containing very disappointing statistics.
By the way, I find it very disappointing that some of these highly paid lobbyists think it is adequate to send us their briefings the evening before the debate—I often even get them on the same morning just before I come into the Chamber. It is both irritating and frustrating because they often contain really useful information that is too late to be used. Somebody is paying these people to fail to influence us.
Having got that rant over, to return to the actual statistics, there seems to be an imbalance between the percentage of the medical research budget that is spent on understanding how to improve matters for people at the end of life and the amount their deaths cost the health service. Either we need to spend more on research or spend less by giving more people what they want. As the noble Baroness, Lady Finlay, said, it does not cost more; it costs less to do it properly. Supporting families and carers to care for dying people at home—where they want to be—is far cheaper, even when a package of excellent services is provided, which I am afraid is rare. I was also concerned at the Royal College of Nursing survey, which told us that over 58% of nurses said that patients’ wishes could not be fulfilled because of a lack of time or training.
The Bill seeks to resolve many of these issues and we on these Benches support its principles and call for the wide implementation of the standards and procedures contained in it. However, we would like to discuss whether it is right to enshrine these in primary legislation rather than ensuring that they become the standard best practice everywhere. There is a danger of a legal minefield here but I am sure we will talk about that at later stages.
There is just one item missing: the Health Select Committee’s recommendation that a senior named clinician in each NHS trust is given responsibility for monitoring how end-of-life care is being delivered within their organisation. We might consider laying an amendment to that effect at the next stage of the Bill and I hope that the noble Baroness, Lady Finlay, would support that.
The Bill contains many important elements but I particularly welcome Clause 2(2)(c) and (i) and Clause 3(1)(d), which all refer to support for those who care for the patient. Clause 2(2)(c) refers to support for other health and care workers looking after the patient other than the clinicians. Clause 2(2)(i) refers to a point of contact being available at all times for those looking after patients in their own homes. Clause 3(1)(d) requires health workers to be trained in,
“ways to support families and carers”,
and to involve them in decision-making.
I particularly support those elements of the Bill because, in a Bill which focuses mainly on the medical aspects of palliative care, it would be all too easy to forget that the patient’s well-being and the peace or otherwise of their death depends very much on the ability of those around them to be confident about what they are doing. That confidence only comes from knowing that further support is there when they need it. If that support is not there, families, and even some professionals, will reluctantly agree for patients to be taken to hospital, even when they know that this would not be their preferred place to die. By the way, this would of course also take up time in A&E and/or an acute bed unnecessarily and add to the burdens on the health service when things could have been done better in a different way. Back in the day, people used to die at home—that was the norm. Perhaps we should go back to the future.
There is some very good practice and some very poor practice. I have a friend whose mother and mother-in-law had totally different experiences at the end of life. Her mother-in-law was diagnosed with terminal cancer some years ago. She was immediately given the support of a Macmillan nurse, who identified her wishes and helped the family put them in place. She wanted to die in her own home and, because everything was planned carefully ahead and they were fully supported, this was achieved. In stark contrast, her own mother and the family had a terrible experience, which I mentioned in my speech yesterday in the debate in the name of the noble Lord, Lord Farmer, in the Moses Room. The patient had multiple conditions, the course of which, although not as simple to predict as a single disease, should have been possible to plan for. However, there was no forward planning and care was reactive—slowly. Bureaucracy, inflexibility, lack of communication, slowness of services to respond, inadequate use of modern technology and complete lack of support for the family characterised their experience. It was a complete nightmare, which I would not wish on anyone else, and I am grateful to my friend for bringing these shortcomings to the attention of the House through me.
I wish the noble Baroness well with her campaign to highlight the shortcomings in our provision of these important services and look forward to further debates on the Bill in due course.
Baroness Byford (Con)
My Lords, I welcome the opportunity to speak in this Second Reading debate, so ably moved by the noble Baroness, Lady Finlay, which deals with the whole question of palliative care. Looking down the list of noble Lords taking part, I am again reminded of the depth of knowledge in this House on this and so many other subjects. My contribution will reflect on current healthcare provision that I and my family received some two years ago when my husband was taken ill. Where it was due, and in fairness, I give great credit to the service that we received, but I question, as others have and will continue to do, why you get a good experience in one place and a poor one in another one.
The noble Baroness, Lady Finlay, has given us detailed proposals to improve the current position and to stop failures. Clause 1 sets out to ensure that health and social care providers provide appropriate support to people with palliative care needs, including,
“access to pain and symptom control … support to meet their preferences in care”,
and “information regarding their condition”. I would add to that the importance of making sure that those family members involved in caring fully understand and are kept in the loop at all times, as they are the ones coping. It is an overwhelming experience to be told there is nothing more that can be done and that the end of life is drawing near.
We were lucky enough to receive great kindness from the Leicester Royal Infirmary. Doctors and nursing staff were available to give us time to talk through our options, and when the final decision was reached, my husband decided that he would like to return home to die there rather than go into a hospice. The Macmillan nurses put in a practical plan, and it happened very quickly. Two days later, my husband came back home with all the supplies that we needed and the team of carers arranged. I know from that experience how well co-ordinated our support was, but I am also too well aware that not everyone has the same experience.
In Clause 2(2)(h), the noble Baroness, Lady Finlay, wishes to,
“enable healthcare professionals to access essential medication at all times for palliative care patients being cared for in their own homes”.
Again, I cannot state how important this is. No one should be left in dreadful pain when medicines are available to ease their discomfort. The one thing that helped us as a family to see my husband’s fight against bowel cancer was the knowledge that pain could be relieved. Surely, quality of life at the end of life, and dignity in dying, is something to which we all aspire. The Bill calls for advancing education, training and research into palliative care, which is dealt with clearly in Clauses 3(1)(a) to 3(1)(d). My earlier observations reinforce the advantages that having good clinical communications and skills benefits both the patient and those caring for them.
I could not speak yesterday, as I was attending yet another friend’s funeral. I pay tribute to the work done in our care homes and, particularly, in the hospice movement. In Leicestershire we have a long-standing hospice, LOROS, and a newer one, Rainbows, which specialises in helping families with young children. Nor would I want this opportunity to go by without thanking most sincerely the Macmillan and Marie Curie nurses for the wonderful support that we had. I add to that the important link with the district nurses, who have not yet been mentioned, but may well be later. They were available 24 hours a day and always said to me, “If in the night your husband really is in trouble, pick up that phone and ring us”. So we had someone, and I wonder how many others did.
As has been said, about 350,000 deaths are expected each year, of which about 170,000 will require specialist palliative care. Some of those are young at heart, others are young children. All should have respect in the way that we deal with them in future. In yesterday’s debate, the Minister concluded that the Government were building with reference to their wish to give more control over healthcare services. The Bill of the noble Baroness, Lady Finlay, gives practical ways in which improvements could be achieved, and I am very happy to support it and wish her well.
Baroness Butler-Sloss (CB)
My Lords, I, too, congratulate the noble Baroness, Lady Finlay, who has led a number of wonderful campaigns to try to improve healthcare in this country.
I am a vice-president of Hospiscare, which is based at the Royal Devon and Exeter in Exeter. It looks after about 1,000 patients a year in Exeter and its environs. About 42% of the patients looked after by our hospice care die at home. Although not every patient should die at home, it is impressive how well our local community volunteers, as well as nurses, are looking after the people of that area. The bed occupancy in our hospice is generally only between 10 and 15 days at the very latter end of patients’ lives, which again is a tribute to our community nurses. We have two day centres, one new, but only 19% of the cost of keeping this going comes from a grant, so I can tell you that we are all kept pretty busy trying to raise the rest of a very substantial amount of money.
The point I want to make from this is the enormous importance of community nurses, whether the district nurses which the noble Baroness, Lady Byford, mentioned or the nurses and volunteers from the local hospice. The particular point made to me by the chief executive when I asked her what I should be saying was her concern at the inequality of provision even in our area. She estimates that another 1,700 people would benefit from help by those who are trained to recognise, assess and triage palliative care needs—not necessarily coming through the hospice, but by people who actually know how to look after those people. That is lacking.
As you can imagine, our hospice, like all the other hospices in the country, as I understand it, is enormously supportive of the Bill. I would like to raise two particular points. The first is the importance of the duty to commission. That is crucial. The other, perhaps even more important, which again was raised by the noble Baroness, Lady Byford, concerns education, training and research. They come back to the work of those on the ground identifying who needs help and helping them. I wish the Bill well.
Lord Davies of Stamford (Lab)
My Lords, the Bill is an excellent initiative, and I congratulate the noble Baroness, Lady Finlay, on bringing it forward. I cannot imagine that anyone would object to the substantive provisions of the Bill. Some people might think that it is too prescriptive, that it overrides local initiative and clinical commissioning groups and forces everyone into the same Procrustean bed, but there will always be a trade-off between having some local autonomy in the health service and having a national health service and avoiding a postcode lottery. If we have to err—and one does always have to err in human affairs—we should err more on the side of having a national service, because that is both what the public expect and what the consensus in this country has believed that we have, ever since the 1946 Act and the 1944 White Paper.
One of the great problems of the NHS is the complete lack of external accountability. It is a platonic system in which the experts—or supposed experts; mostly they are no doubt genuine experts—provide for the public as a whole, the hoi polloi, what they think the public need. There is no accountability and no way in which to second-guess that. In the private sector you can of course shop around and go elsewhere, but in the public sector—in the NHS—that does not work. The experiment with GP commissioning, allowing GPs supposedly to commission secondary healthcare all over the country, never worked. We do not even have the indirect democratic accountability that we now have with the police service, with elected police commissioners setting out what should be the strategy and priorities in their own area. In those circumstances, Parliament has a very important role, and an initiative like today’s Bill is a very good idea, because we are at least accountable to the public in Parliament and it is important to make sure that we set down the sort of standards and norms that the public are entitled to believe will be applied in the health service.
There is one thing that I believe should be in the Bill—and if the Bill goes forward to its next stage, as I profoundly hope that it does, I might venture an amendment of my own along these lines—which is that in this matter of palliative care, above all, the patient must be sovereign. There must be an absolute obligation or condition, so long as the patient is conscious, to explain fully the facts of the patient’s diagnosis and prognosis and the implications of any change in treatment or proposed change in treatment, and implications of any change in venue. For example, being downgraded from an intensive care bed to a general ward or acute bed will reduce considerably the chances of a successful resuscitation, if it is to be attempted. If a patient leaves a general hospital—I totally agree with the argument put forward in favour of often doing this and in favour of a hospice in the last moments of a patient’s life—the patient will be in a facility that probably does not have certain means of life support such as dialysis or ventilation. Indeed, I once asked staff in a hospice whether it had drips for providing intravenous hydration and nutrition to their patients. They looked at me rather strangely and said that they had them but they rarely used them. The implications were fairly obvious.
If I am ever in a hospice, I shall be absolutely terrified every time I receive an injection. I shall wonder whether it is the last one and it is the moment when I am going into palliative sedation, as it is euphemistically called—I tend to call it a palliative coma—from which I shall never awake. I want to be in charge and I want to know what is going on, and so long as I have breath in my body and a mind that is working I want to be able to conduct a dialogue with my clinicians. Above all, I want to be able to choose. If a patient wishes to choose to have the full apparatus of medical science apply to maximising his or her longevity, the patient should be entitled to that. If he or she wants to choose palliative sedation along the lines of the Liverpool or some other pathway, he or she should be entitled to that. If he or she wants to choose the exact moment, timing and method of his or her death, with all the legal safeguards set out in the late and much lamented Bill of my noble and learned friend Lord Falconer, in my view he or she should have that—and that is a matter that remains open, to which Parliament must return. I hope that it will, in the next Parliament.
Lord Ribeiro (Con)
My Lords, I too thank the noble Baroness, Lady Finlay, for introducing this important Bill. I shall address Clause 3, on education and training. In the debate proposed by the noble Lord, Lord Farmer, on palliative care yesterday, we noted the many harrowing accounts of treatments delayed, patients’ wishes to die at home denied and junior doctors unable to provide timely device and treatment. As a house surgeon in 1968—a long time ago—I felt well supported, not only by my medical colleagues but by the wise ward sister who provided immediate care and support for me. It is best to remember that nurses are much closer to patients and their advice on treatment should never be ignored.
However, times have changed. We no longer work an average of 100 hours a week or are resident on call. We now require junior doctors to work shifts of an average of 48 hours a week. Continuity of care has become a big problem, and handovers of the care of patients mean that some are occasionally overlooked. This is not the sort of care terminally ill patients require. The Parliamentary and Health Service Ombudsman’s report makes the need for education and training in palliative care mandatory, yet a report in the BMJ in 2013 found that 63% of doctors felt that they required specific training in palliative care. A national audit on care of the dying found that mandatory training for doctors occurred in 19% of trusts and for nurses in 28% of trusts. Given that only 21% of the sites audited had access to face-to-face palliative care services seven days a week, it is clear that we have a long way to go, and I hope that this Bill will help to accelerate the process.
A review of the Liverpool care pathway in 2014 found that medical training in palliative care was inconsistent and often inadequate and left many junior doctors ill prepared to care for dying patients. Breaking bad news and managing dying patients are difficult to learn and often require trainees observing how more senior staff or consultants do it. Part of learning is to reject practices which lack compassion and sensitivity. I agree with the noble Baroness, Lady Finlay, that end-of-life care should be part of all medical school curricula, as it is in the Intercollegiate Surgical Curriculum Programme—ISCP—for surgical trainees. The MRCS exam tests candidates’ ability to manage patients in need of palliative care. It uses actors in examination bays to play of the role of patient and challenge candidates to manage them not just correctly but with compassion and care.
My hospital—Basildon University Hospital—employs a care pathway for terminally ill patients which has an escalating treatment plan. It is established on admission. If there is an expectation of deteriorating health, agreement is reached on whether the intensive care unit is to be used or a programme of palliative care is to be introduced. The end-of life pathway should be consistently applied across all trusts, and I believe that the purpose of this Bill is that that should be the case.
It is also important to remember that not all patients who enter hospices go there to die. My wife, a physiotherapist, worked in a hospice for 10 years. She saw many patients come in and go out again having had their pain controlled, their anxieties, which have been referred to, alleviated and relieved and having been helped to mobilise, if they had previously been unable to do so.
We need to shift the balance from dying in hospitals to dying in hospices and at home in the community, as the noble Baroness, Lady Byford, so clearly explained. Providing access to palliative care seven days a week, 24 hours a day, will encourage more GPs to use those services rather than relying on acute hospitals for their dying patients. In doing so, we can reduce the cost in hospital because caring for patients in hospital is expensive and most terminal patients spend an average of 30 days in the acute hospital sector, which we should seek to avoid.
The Lord Bishop of Carlisle
My Lords, I declare an interest as a fairly active patron of Eden Valley Hospice in Cumbria and of Hospice at Home Carlisle and North Lakeland. They work together to provide outstanding end-of-life care for people in the community as well as for those in a hospice bed. Like so many others, I am also most grateful to the noble Baroness, Lady Finlay, for initiating this significant Bill.
Reflecting on the now defunct Liverpool care pathway, several medical practitioners of my acquaintance suggested that the real problems lay not in the principle behind it, which was essentially a good one, but in the lack of training given to staff who used it and in the sometimes inadequate way they communicated what was going on, especially to relatives.
Interestingly, training and communication are two of the issues that emerge most clearly from the plethora of recent documents on palliative care, including the ombudsman’s report and those briefings from charities that most of us will have received, however belatedly. They are also two of the issues that are addressed head-on by the Access to Palliative Care Bill, and they have already been mentioned several times today by your Lordships. That is why I want to make training and communication the focus of my brief remarks today.
First, I shall address training. Like end-of-life care itself, as the noble Baroness, Lady Finlay, mentioned in her introduction, and as the noble Lord, Lord Ribeiro, has just explained, the training offered to generalists in this whole area is distinctly patchy. In some trusts it is excellent: indeed, one of the main tasks of a consultant friend of mine who is an end-of-life lead is to educate the whole workforce in her huge hospital. That includes training in electronic care planning and advanced decisions. In other trusts it is not so good and, as a recent article in the Nursing Standard pointed out, a lack of training can be exacerbated by staffing shortages and the stress that results. No wonder the chief executive of Marie Curie says that,
“the government must make training in care of the dying for all health and social care professionals a priority”.
This is addressed in Clause 3 of the Bill.
I should also mention in this context the importance of providing training for prison staff that addresses the particular needs of prisoners and their families. In yesterday’s debate on palliative care, my right reverend friend the Bishop of Rochester indicated that there is some very good practice on this in prison but, as in the wider population, it is inconsistent. With an ageing prison population, it is important to recognise that prison staff and prisoners need some basic understanding of palliative care needs. It would be helpful if this ultimately could be mentioned in the Bill.
I turn to communication. This applies in part to communication across trusts and between members of multidisciplinary teams. Without good communication and close collaboration, people can easily miss out on good end-of-life care plans and specialist support. But it also applies to communication with patients and with their families, which, as the ombudsman’s report makes clear, is sometimes woefully inadequate. The importance of this sort of communication is highlighted by the House of Commons Health Select Committee report, which makes it the second priority of care and indicates that there is occasionally a reluctance on the part of healthcare professionals to talk about end-of-life issues. There is of course an overlap here with training. It is vital that staff should be able to recognise and acknowledge the spiritual dimension of palliative care. In yesterday’s debate I referred to the close link between spirituality and compassion.
Then there is the crucial matter of communication with, and care for, children and adolescents at the end either of their own lives or of the lives of their parents and friends. Palliative care for children has often been neglected in the past, and some major children’s hospitals still have no palliative care team. There is much more that can and no doubt will be said on this very important subject.
I am very glad to give this valuable Bill my warmest support and that of the Church of England. A relatively small initial financial investment, combined with more effective use of existing resources, could make a huge difference to the cost, consistency and overall quality of the care that one day every one of us will need.
Lord Mackay of Clashfern (Con)
My Lords, in this country we have a very high level of skill in palliative care as a specialty in medicine, which I think is unique in the world. However, as the noble Baroness, Lady Finlay, said in opening this debate, the question is how to get that care to the people who need it, because they are spread across the country. The noble Baroness, whom I congratulate on bringing the Bill forward, knows much more than I do about the practical steps that are required to bring that about. The Bill gives a good level of practical scope to achieving what we want to achieve: that patients everywhere, as they approach the certainty of death, will have proper palliative care. Of course, sometimes one of the difficulties is knowing how long care may have to last. As we know from other studies, it is quite difficult to predict when death will happen, unless you bring it about artificially in some way. Therefore, sometimes the strains of palliative care have to go on for much longer than might have been anticipated at the beginning.
It would be completely wrong to leave out of this account the terrific work of the hospices. I remember going to a hospice in Edinburgh and meeting a lady who said to me, “If you have to die, this is the best place to do it”. My noble friend Lord Howard of Lympne is president of the national hospice body and I am sure that he will have more to say on this than I. It is also important to notice the need for palliative care, not only for cancer patients, where there is a degree of concentration on that, but also for people with heart disease and other illnesses which require specialist treatment.
I am particularly concerned with the area of giving palliative care to people in their own home in remoter areas far from centres, which is extremely important. Hospices have developed a way of dealing with these points in their own areas; the help of the Macmillan nurses in particular in that connection is very important. However, we know that it is difficult enough to get GPs in these areas, never mind elaborate palliative care. On the other hand, the palliative care may be done by instruction and principle, and the nurses are certainly vitally important in that.
One of the problems that exists in the general area of palliative care, particularly as between hospitals and your own home or a hospice, is the social care and funding of the service of health as distinct from the mode of funding social care. The problem of elderly people receiving palliative care in hospital who could have it equally and more comfortably at home has to do to some extent with that divergence of funding. It is a difficult issue, which I hope in due course may be addressed. It is disappointing to see people kept in a hospital bed at considerable expense when they want to be at home and—with the arrangements that can be made there—are fit to go home, simply because a care plan or whatever else you like to call the arrangements has not been made. They can therefore remain in the hospital for an unnecessarily long time.
The practical steps that are indicated in the Bill by the noble Baroness, Lady Finlay, are extremely valuable and important, and must go some way to achieving the aim which her Bill sets out to achieve. I congratulate her very warmly on that.
Lord Crisp (CB)
My Lords, I, too, congratulate the noble Baroness on introducing this Bill and on her very eloquent speech, in which she drew out all the essential points.
The provisions of the Bill are important in themselves but the Bill is also important in raising issues of dying with dignity and good care at the end of life, not all of which, of course, can be legislated for. However, it is significant in another way in that it is about some of the wider changes in priorities in health that are beginning to take place. We are beginning to see both globally and nationally much more focus on disability and on mental health, which I am pleased to see is keeping the Minister busy in this House. There is much more focus on social care, on care more generally and on what are called non-communicable diseases or long-term conditions, where the task is not to produce curative effects but to help people to live with disability and limitations. As the noble Baroness, Lady Finlay, said, it is also about quality, care and costs.
There are things that all those emerging or renewed priorities for health have in common, and I want to mention three of them. The first is the very strong individual, and indeed family, focus. The point has already been made that palliative and end-of-life care needs to be about what individuals want. It is not just about offering a menu of choice; as the noble Lord, Lord Davies, said, it is about control. I am reminded of my father, who, in the last year of his life in his 90s, discharged himself from hospital against the advice of the medical staff. I was quite sure, as I believe were the medical staff, that that act of rebellion—or, if you like, bloody-mindedness—was very good for his morale and probably affected the length of time that he subsequently survived. Therefore, this is about control as well as about a menu of choices, but it is also about families.
Although I agree with the provisions of the Bill, it is a question not just of having a professionalised death but of people being a bit more willing to talk about death, having those sorts of conversations and thinking about death in a much wider way. I am aware of the important point made by the noble Baroness, Lady Hollins: that the person who is dying dies but there is often a serious aftermath, which I guess all of us know something about.
The second important point is variation, and it keeps coming up. We have some absolutely excellent practice—I am sure we all wish to congratulate the UK on coming top of the palliative care table in a recent Economist Intelligence Unit survey—but we also have some awful care. Therefore, it is important to manage variation. The other point that needs to be brought out here is that we need to understand who misses out. We often talk about averages and so on in healthcare but we need to know who is likely to miss out by disaggregating the data and gaining an understanding of whether it is men or women, poorer people or less educated people. Interestingly, in palliative care there is some evidence that one of the groups that seems to miss out is the very elderly—the over-85s. Again, this is a global issue. In the recently agreed sustainable development goals, the great phrase was “Leave nobody behind”, and that must be true of where the noble Baroness, Lady Finlay, is taking us with palliative care.
My final point, which joins up all these emerging priorities, concerns technology—not just assistive technology, pharmaceuticals and so on, which are all extremely valuable, but IT and communications technology. My noble friend Lady Lane-Fox, who is not able to be in her place today, is happy for me to say that her new organisation, Doteveryone, believes that digital health and new technologies can radically transform services. Importantly, Doteveryone will be working on a project focused on older people at the end of life, reaching those traditionally seen as the most excluded—the over-85s. It will be very interesting to see where that project takes us.
I want to make a couple of specific points. First, I know that we have all been lobbied about children’s palliative care. We have not really mentioned it so far in the debate, although I do not know whether others will raise it. It seems important that there is some reference to the particular and specific needs of children when we talk about palliative care.
Secondly, I agree very strongly that this is about all health and social care workers; it is not just about the specialist few. It is about everyone understanding this holistic approach to care.
Finally, in her opening remarks the noble Baroness, Lady Finlay, said that it is time to act and that the Bill is about saying, “These are some mechanisms to make something happen”. That is very important in the context that she and others have articulated—that improving quality is very often about eliminating waste and wasteful procedures. Getting it right and therefore improving quality in many cases also has a beneficial effect on costs. For all those reasons, I very much support the introduction of the Bill to this House.
Lord Howard of Lympne (Con)
My Lords, I declare my interest as chairman of Hospice UK, the umbrella organisation for all hospices in the United Kingdom.
The concept of a good death has, in recent years, been increasingly recognised, and recognised as something that should be available to all. This Bill will go some way towards achieving that objective in this country, and I add my thanks and congratulations to the noble Baroness, Lady Finlay of Llandaff, for bringing this forward.
The Economist Intelligence Unit survey, which placed the United Kingdom top of the 80 countries surveyed in terms of the quality of their palliative care provision, has already been referred to. It is worth noting that the previous survey carried out by the Economist Intelligence Unit, in 2010, five years ago, reached a similar conclusion—the United Kingdom was again rated as the best in the world. I hope that I can be forgiven for emphasising the contribution of hospices to that achievement, and I am grateful to those who have already spoken in the debate who have expressed their appreciation of what the hospice movement does. It is a movement, of course, that started in this country. People still come from all over the world to see how we do it. I am proud to stand here and say, without any fear of contradiction, that the care provided by hospices, both in hospices and for people who die at home looked after by hospices, is second to none. The recent ONS survey found that 85% of bereaved people whose relatives had died in a hospice or at home looked after by a hospice thought that the care they had received was “excellent” or “good”. The Care Quality Commission has rated more than 90% of hospices “good” or “outstanding”. In yesterday’s debate, the Minister referred to the observation of the chief inspector of the CQC, who said:
“I know from what my inspectors are finding”,
that,
“hospices provide amazing care and support for people at the end of their lives”.
To take up a point made by the noble Lord, Lord Crisp, hospices do not deliver professionalised care. Of course many of the people who work in hospices are professionals, but there are very many volunteers too. To illustrate the difference between hospices and hospitals, I tell the story of a man who was very reluctant to go into a hospice. Eventually, he was persuaded to by his family. When he got there, the first thing they said to him was, “Is there anything you really want?”. He said, “The one thing I would really like is a bowl of porridge”, and, within half an hour, he was provided with a bowl of porridge. With the best will in the world, no one can imagine that happening in any of our hospitals.
The ratings for hospices, which I have mentioned, are far superior to those that hospitals receive. So I repeat today my call to the Minister for help in reducing the number of people who die in hospital. Most people do not want to die in hospital—they do not need to die in hospital and they should not have to die in hospital. It would actually save the NHS money if these people were not in hospital but were transferred instead to hospice care. Many hospices work closely with the NHS trusts in their areas to achieve this. One example was quoted by my noble friend Lord Farmer in yesterday’s debate. We want to evaluate the best way of doing this so that we can put forward to the Government the most effective arrangements for taking the 50,000 people a year who currently die in hospital out of hospital and into hospices or hospice care at home. To carry out that proper evaluation would cost what in this context is the paltry sum of £250,000. I repeat my call to the Minister to make that available.
I particularly welcome the provisions in the Bill which would place a duty on clinical commissioning groups in relation to the funding of palliative care. Three-quarters of hospices have had their NHS funding, which on average provides only a third of their costs, either cut or frozen in 2014-15. The record of hospices in meeting the shortfall from charitable sources is breathtaking. Collectively, 200 charitable hospices in the UK raise £1.9 million a day from local charitable sources. It is an extraordinary achievement, but if that shortfall is increased, as it has been, it will be increasingly difficult for hospices to continue their successful work.
Finally, I draw attention to the briefing that we have received—I hope, in time—from Together for Short Lives, which looks after babies, children and young people with life-threatening conditions and is affiliated to Hospice UK. It has asked for some amendments to the Bill which no doubt we will return to and which I hope will receive sympathetic consideration when we get to Committee stage.
The Economist Intelligence Unit survey quoted the words of the national director for hospice care at Hospice UK. She said:
“The things that make a better death are so simple … It’s basic knowledge about good pain control and conversations with people about the things that matter”.
This Bill will help bring about a better death for many people. On behalf of the hospice movement, I whole- heartedly welcome it.
Lord Howarth of Newport (Lab)
My Lords, it is a pleasure to follow the noble Lord, Lord Howard of Lympne, whose work on behalf of hospices I admire just as I admire the hospices themselves. I add my congratulations and thanks to those offered to the noble Baroness, Lady Finlay of Llandaff, for tabling this Bill, which I fully support.
I shall start by talking about the needs of children in palliative care, responding to the urging by the noble Lord, Lord Crisp. I am sure that all noble Lords have received the briefing from the admirable charity, Together for Short Lives, which tells us that, in the United Kingdom, some 40,000 children live with life-threatening or life-limiting conditions.
Children’s palliative care is different and needs to be different, if only for one important reason: because it may well, sadly, be needed for the whole of a child’s life. Yet the availability of resources for children’s palliative care is even more inadequate than it is for adult palliative care. Clinical commissioning groups contribute on average 10% of the cost of children’s hospices compared to 30% of the cost of adult hospices. Thirty-five per cent of children’s hospices had their funds frozen between 2013 and 2015 and 23% had their funding cut. Some families in remote rural areas have no access to specialist children’s palliative care. There is a dearth of people with the skills and knowledge to care for children who suffer from complex and life-threatening conditions.
The Health Select Committee noted also that a wide variety of childhood conditions can cause death before adulthood. Many of them are rare and, therefore, the requirement for diversified specialist care is all the greater. A Royal College of Nursing survey in 2015 found that nearly a third of children’s nurses said that they did not have the resources to deliver adequate care in a home setting, which of course is what most families want; and 31% of nurses acknowledged that they lacked the confidence to discuss end-of-life issues with children and their families.
The RCN calls for a greatly increased number of undergraduate training places to address what it describes as,
“massive gaps in children’s nursing”.
Only 17 community children’s nurses were due to qualify in 2014-15. Many consultants in this field are approaching retirement; too many are not trained to level 4. The training of general practitioners in paediatrics and in physical and mental healthcare for children needs to be improved. There is a 15% vacancy rate among children’s social workers. The commissioning of children’s palliative care is patchy and inconsistent, insufficiently integrating the various disciplines and agencies that need to be involved. The Bill addresses this range of problems. I do not know whether the noble Baroness intends in due course to provide model guidance, but guidance would be preferable to amendments to the Bill.
As to the predicament of children who are bereaved or face bereavement, the Childhood Bereavement Network, to which the noble Baroness, Lady Hollins, referred, has again briefed us extremely helpfully. Its 158 members are supporting children before and after bereavement. The network estimates that some 30,000 children under 18 lose a parent each year and, of course, more lose a sibling or a grandparent. It is a very sensitive issue and it is very difficult for children, parents and professionals to communicate in these situations.
Gillian Chowns, writing in Bereavement Care and reporting on her research among adolescents facing the death of a parent from cancer, quotes those children. We hear their own voices describing their struggle with their isolation, their anxiety—who is going to care for them when a parent is gone? They want to know the full truth and they need the opportunity to release strong emotions. All such children should have access to well-organised support, proper information, a plan as to who is to do what, and advice and support for other family members, carers, their peers and their teachers. Only 65% of local authorities have an open-access service for bereaved children and most of those services are provided by the voluntary sector through charities such as the wonderful Winston’s Wish.
As the noble Baroness, Lady Hollins, also mentioned, children who suffer bereavement typically face worse outcomes in their future lives, including earlier mortality, mental health problems and entanglement with the criminal justice system. It is not only better but cheaper to ensure that these children come through the emotional crisis of losing a parent or someone important to them without being traumatised.
Many noble Lords will have read the beautiful book by Atul Gawande, Being Mortal, in which he argues that the role of those caring for the terminally ill is not to fight death to the ultimate but to ensure well-being—to ensure what the noble Lord, Lord Howard, called good deaths.
I will make one final point. The arts have an important contribution to make in palliative care. Music therapists, storytellers and those practising other art forms are able to help terminally ill people to prepare mentally, emotionally and spiritually for crucial transitions; to turn depression into hope; to have a sense of agency; to integrate feeling with cognition and sensation; and to gain insight and a sense of meaning and value in what would otherwise be a deeply unhappy and traumatic situation. The arts provide a safe opportunity to organise intense, confusing and contradictory thoughts and feelings; to find self-expression; to share important information that has previously been too difficult to talk about; and to mitigate isolation.
Lord Maclennan of Rogart (LD)
My Lords, it is a privilege to follow the noble Lord, Lord Howarth, who focused very much on the area I intend to speak about, which is children. I am grateful to the noble Baroness, Lady Finlay of Llandaff, for bringing forward this Bill because I believe that the best palliative care is helpful to families as well as to dying people. We need to spread this form of care, which at its best can be very good, across the country.
The Royal College of Physicians points out that only 21% of sites have access to face-to-face palliative care seven days a week, which is a recommendation that has long been advanced. It also shows in its National Care of the Dying Audit—Hospitals, which was completed in 2014, that mandatory training in care of the dying was required for doctors in only 19% of trusts and for nurses in 28%, despite national recommendations that such training should be provided. That is not satisfactory and this Bill should help the position considerably. The audit also mentions that 53% of trusts have a named board member with responsibility for care of the dying, but 47% do not. That seems unacceptable, and I hope that it will be taken into account in the implementation of this Bill.
The clinical reader in palliative medicine at Oxford University, who no doubt sent his letter to most Members of the House, points out that there needs to be an awareness that palliative care is a form of emergency medicine and intensive care. It needs to be proactive to prevent crises as well as reactive to cries for help, and that sensitive communication skills embedded within a holistic approach is key to quality palliative care.
On the issue of children, we have had an extensive and thoughtful briefing from the charity Together for Short Lives. It is somewhat disturbing that the number of children with life-threatening and life-limiting conditions has gone up from 30,000 10 years ago to 40,000 today. It is clear that we need to be specific about how to help children and young people. The noble Lord, Lord Howarth, was very specific and I embrace what he had to say. However, we have heard that between 2013-14 and 2014-15, 23% of children’s hospices have had their funding cut as a result of financial restrictions on NHS commissioners. I hope that that will be noted by the Government and that their response will be positive. The treatment for young people with the expectation of short lives is clearly different from that for older people reaching the end of their normal lives. It requires specialist education, and I hope that that will be considered. The professional skills, experience and competencies needed to care for children and young people are not adequate, and should be a necessary part of the education of nurses and doctors.
Lord Suri (Con)
My Lords, not long ago I made one of the most difficult choices that I have been asked to make in this place. I speak of voting against the Assisted Dying Bill, sponsored by the noble and learned Lord, Lord Falconer. I voted against it because I believed that it was an absolute affront to our creator to take our own lives. I felt this self-murder to be a crime against nature and I could not support the state allowing it to happen. This all informs my view on the legislation that has been set before us. While those who are in intense pain may wish to kill themselves, they must also be allowed to access the services that could help them maintain their dignity despite their suffering.
This Bill will ensure that those with complex needs will be able to get support and will focus end-of-life care back on the patient. The case studies explored by the Parliamentary and Health Service Ombudsman show how badly some people have been let down at the end of their lives. I am not for one moment criticising the work done by the health service. I have used the NHS for many years, as have my family. I have been lucky enough to see its excellent work up close.
It is the systems of end-of-life care that are to be reformed through this Bill, not the people. On reading the report, what struck me was how unclear the instructions for communication were at this critical stage. One subject, Mr N, suffered unnecessary pain due to a lack of clear instruction for co-ordinating a response between specialists. This will be remedied by the new requirement for a single point of contact, as proposed in the Bill. The new responsibility that the CQC checks the provision of palliative care during inspections will also serve to uphold standards, as will the requirement for medical professionals to receive additional training in pain control and communication.
As ever with new legislation, there will be sceptical voices demanding to know how we will pay for it. I agree with the noble Baroness, Lady Finlay, that this Bill, if implemented properly, can save money. Promoting better standards of care and making the decision-making process more streamlined will save the time of our medical professionals and generate efficiencies that can be harnessed.
I urge this House to think of the gigantic human cost involved. To lose a relative is a devastating emotional blow in itself but to see them die in agony, devoid of the dignity with which they were born, is even more crushing. The considerations of the families are, to my mind, enough to justify the passing of this Bill. For that, and the other considerations, I urge noble Lords to approve this Bill.
Lord Warner (Non-Afl)
My Lords, as this is the first time on which I have spoken from this position in the Chamber, perhaps I could clarify my status. I am not a Member of the Cross-Bench group at this stage but a non-affiliated Member of your Lordships’ House. Let me reassure your Lordships that I have not had a personality transplant because I speak from this place—some may say that that is a shame.
One of my long-established views is to improve the end-of-life experience and, in particular, to give people more choice on how and where they end their lives with the maximum dignity. Clearly, good-quality, affordable and accessible palliative care is an important part of the end-of-life choices we should all be able to exercise when our time comes. That is why I strongly support the Bill and warmly congratulate the noble Baroness, Lady Finlay, on her initiative in bringing it forward.
I have no problems with the Bill’s structure and I very much support the points made by the noble Baroness, Lady Finlay, and others about the need to tackle the huge geographical variation in access to good-quality palliative care. However, I will explore in more detail a particular aspect and think about bringing forward amendments in Committee. I hasten to add that the issue I shall raise is not assisted dying. I still strongly support legislation on assisted dying along the lines of the Bill proposed by the noble and learned Lord, Lord Falconer. I gently say to the noble Lord, Lord Suri, that good palliative care is a partner with choice on assisted dying. They are not rivals, but part of the end-of-life choices that many people would like to have.
That brings me to the area I would like to strengthen: the choice to die at home, or the place that people regard as home. I have a Private Member’s Bill on this, the Right to Die at Home Bill, which is unlikely to be reached in this Session. As drafted, my Bill does not sit well with this Bill. It is no purpose of mine to damage this Bill by trying to force it into the structure of my Bill.
Here I turn briefly to the excellent briefing from the End of Life Care Coalition. The bull point to emphasise is one made by a number of other people: about 50% of people in the UK continue to die in hospital, despite this being the place where most people would least prefer to be. It is also the most expensive in care cost terms and is rated substantially lower than care at home, in a hospice or in a care home. We have achieved something quite remarkable in this country. Each year we allow half the people who die to do so in the place they least want to be, which provides the least acceptable care and is the most expensive for the taxpayer. That is no mean achievement when the NHS is in such a parlous state financially and needs to care for far fewer people in hospital.
I want to explore with the noble Baroness, Lady Finlay, how we might frame an amendment that captures the spirit of my Bill without damaging the structure or purpose of hers. After a helpful discussion with the clerks, I think that this might be done by giving patients a right to receive palliative care at home right up to the point of death. I believe that this would effectively provide people with an effective right to die at home or the place they regard as home. It would help to change some of the cultural and professional problems that we have in this area, which a number of other people have drawn attention to, in particular the noble Lord, Lord Crisp. It would prevent what happened to my father, who was discharged from a hospice to die in hospital—in my view, quite unnecessarily. I have an instinctive feeling that that is going on from time to time in some parts of the country, apart from for the people who get to receive hospice care.
Before I sit down, I shall touch briefly on money—a subject that I know is dear to the heart of the Minister. Allowing more people to die at home will save the NHS money, but some of those savings—this is a point I want to emphasise—will have to go to boost social care, which is still scandalously neglected by all the political parties. Macmillan has shown that palliative care delivered to people’s home is about a third of the cost of that delivered in an institution. Let us have a bit of sensible, integrated public policy-making. I hope that we can give this Bill a prompt passage.
Lord Cavendish of Furness (Con)
My Lords, it is a pleasure to follow the noble Lord, Lord Warner. I have always listened to him with great respect and, however he describes the seat he is in now in this House, I will continue to do so. I wish him well. However, I regret that, along with the noble Lord, Lord Davies, he chooses to keep alive the question of the Assisted Dying Bill following the rather conclusive vote in the other place recently.
I can only guess at the amount of work that goes into drafting a Bill such as this. I pay tribute to the noble Baroness, Lady Finlay, not just for this Bill but for all the pioneering work that she does for palliative care in the widest sense. It speaks volumes for the cause as well as the high regard in which the noble Baroness is held that so many of us are mustered in your Lordships’ House this Friday afternoon.
In the time available to me, I want to make three points: one general and two specific. I need first to declare an interest. Referring noble Lords to the register of interests, I merely say that whatever small value I might add to the debate stems from a very close involvement with St Mary’s Hospice in south Cumbria since its inception some 25 years ago. What a long way we have come since then, but there are still pockets of ignorance. I still occasionally hear a doctor saying that palliative care is no more than common sense—just give the patient a jab of morphine. I still hear people in care homes claiming that they can do the job as well as hospices. But death, dying, loss, grief and bereavement have been largely demystified in the last 10 years or so. They are discussed much more openly than they used to be. I look forward to what has been described as “the cultural aversion to talking about death” being entirely a thing of the past, a point which was eloquently made in the powerful contribution of the noble Lord, Lord Crisp. The culture is changing and changing for the better, even if we have a long way to go.
Earlier this month I participated in a conference organised by the Cumbrian hospices, with which the right reverend Prelate the Bishop of Carlisle is associated. In the morning we heard from, among others, Professor Allan Kellehear. In a compelling talk delivered with blunt Australian succinctness, he emphasised that responsibility for all end-of-life issues lay with everyone—with all of us. He called for leadership in the community to achieve these goals.
In this connection I think it is worth my saying that when we started at St Mary’s all those years ago, I felt that we should never look for, or accept, more than the cost of the clinical costs which we were incurring, which was then, and remains, I think, about 30% of the whole. Of course, it was a very long haul, with great financial crises along the way and some quite difficult moments, but the result was real ownership by the community. Huge benefits flowed from that ownership. It attracts money, as the noble Lord, Lord Howard, mentioned, and it attracts volunteers. The staff develop a sense of accountability to their local community and feel proud and happy to have that. It gives the trustees confidence that they are no longer alone in carrying the financial burden. In a very real sense ownership is shared. My contention is that this sense of community ownership adds force to the aims of this Bill. A group of local worthies asking for something is one thing, a united community demanding it is quite another, and by magnitudes more powerful.
The afternoon session of the conference was dedicated to motor neurone disease. Three MND spouses spoke to us with huge courage and answered our questions. Two of the suffering partners were living and one had recently died. We heard moving and harrowing tales of living with this awful condition. We heard that the NHS provision was excellent but we also heard, with great sadness, that the agency provision, as reported, was absolutely shocking, with untrained, underpaid, overworked and unreliable staff; and always in a great hurry.
I subsequently spoke to the husband of a wonderful and inspiring neighbour who suffers from MND. He confirmed that their experience with the local NHS was excellent but that the care provided by the agency carers was deplorable. I hope and believe that this experience is not universal but I wonder whether such companies will fall under the provisions of this Bill. Perhaps my noble friend the Minister will be able to comment when he responds on the position of agency staff in general and whether or not it applies to the Bill before us. The same gentleman also told me that the generous provision of equipment was withheld from his wife on the grounds that she was over 65 when diagnosed. If that is correct, it seems very unfair and arbitrary. Again, I wonder if my noble friend could help with this. I have not given him any notice of this question but I would be very grateful if he could write to me.
To my mind, the advances in palliative care and the progress of the hospice movement in my lifetime rank among the great achievements of this country. That there is powerful demand for the best palliative care to be universally available is not unreasonable. The Bill represents another milestone in the long march towards that goal. It deserves our wholehearted support.
Baroness O'Neill of Bengarve (CB)
My Lords, this is a Bill on the right topic—on assisting the dying. That term has been used recently for a quite different Bill which was aimed at only a very narrow number of those who sought death and was about assisting their suicide. Here we have something that speaks to the many who die each year. So it is the right topic—and quite necessary.
It is also the right time, as the demography shows. We are going to have more deaths each year in the fairly near future. That may sound depressing but it arises out of a rather happy fact. Currently we have about half a million deaths in England each year, about 30,000 in Wales and about 55,000 in Scotland—so in round numbers, 550,000. The figure that has been referred to of 350,000 is the number of so-called expected deaths. But that figure of 550,000 will rise. Although we are all living longer, this increase in life expectancy is not a promise of immortality for any of us. The number of people who are likely to die is projected—it is only a projection but it is significant—to rise over the next 20 years to about 670,000 per annum in England, Scotland and Wales. That is a big increase on 550,000.
Every death will be sad in its own way but every death could be well or badly managed and it is clear that we know how to do it well in this country. The finding of the Economist Intelligence Unit is very reassuring in that respect. As my noble friend Lady Finlay of Llandaff said, the problem is the patchy availability, not the standard that we reach in many cases—not just exceptional cases. The quality of the best is excellent but it is availability at the time of need that is very bothering.
Unsurprisingly, availability at the point of need is less good for certain communities in the inner cities and for certain ethnic minorities, but I have personal experience of the fact that it is less good in many places that do not fall into those familiar categories. My brother died in leafy West Sussex. He was a well-organised person and when he knew he was dying, he contacted the local hospice and made arrangements to die there when the time came. When the time came and my sons and I could no longer look after him at home, I rang the hospice. They said, “Oh yes, we can take him in three weeks”. As he observed to me, “I shall be dead then”—as he was. We then turned to the GP, who was about to go on his Christmas holiday, and arranged admission to a care home. I cannot fault the standard of care given in that care home but the staff were not permitted to increase the dose of painkillers above what had been prescribed initially. It was Christmas weekend. He died on the day of the tsunami, in very great pain.
The continuation of that sort of event tells us that we are not doing it right at present and that it would not be complex to improve matters. Among the Bill’s many sensible provisions, those that focus on the unavailability of adequate pain relief at the point of need are particularly important. Pain comes in waves, as many people know. It does not wait for working hours, the end of bank holidays or for other events. He died with good care but appalling pain relief.
The problem is not that we do not know how to do it or that we cannot afford it—it would save money. It is a question of a will and a way, and this Bill points the way. I hope we can support it on to the statute book.
Lord Haskel (Lab)
My Lords, in the years that the noble Baroness, Lady Finlay, has served in your Lordships’ House, she has been a fighter and a champion for better palliative care, particularly in her home country of Wales. As a result, Wales has a system of seven-day specialist palliative care which many organisations say is good and successful, and when the noble Baroness wants to bring this to us here in England, we should sit up and take notice.
As the noble Baroness explained, here in England it is up to the clinical commissioning groups to allocate resources to palliative care departments in hospitals or to buy it in from hospices and other organisations—not only beds but their expertise. Apparently there are many guidelines, and many separate agencies—as well as doctors, nurses and the carers themselves—are involved. There are new ways of controlling the pain, as the noble Baroness, Lady O’Neill, just told us about. The Bill seeks to bring order and lay down a more comprehensive approach. The Care Quality Commission is required to examine and evaluate this. This requirement for better care, better organisation and better targeting surely must be welcomed because, as the noble Baroness, Lady Finlay, said, the variation between what is done and what should be done is quite large. This month’s report from the Economist Intelligence Unit points out that such improvements in end-of-life care need not cost more—it just has to be managed and organised better, which is what the Bill seeks to do.
I therefore welcome the Bill; but does it go far enough? For my part, I would welcome a clearer framework for people approaching the end of life to make their own decisions. Other noble Lords have referred to this. The Bill refers to advance decisions to refuse treatment and the Mental Capacity Act, but conversations and discussions need to start early. The Bill deals with patients once they have been confirmed as being end of life. But would discussions and earlier identification not help? That would enable more input from the patients themselves, so that people can have the end-of-life care that they wish for and which is right for them. I welcome the briefing from Compassion in Dying—yes, it did arrive in time—which supports, and even provides, advance decision forms. Can the noble Baroness, Lady Finlay, say how her Bill will help earlier identification and help people to make choices for end-of-life care and know that their choices will be respected?
I congratulate the noble Baroness on the Bill. The changes it proposes and the standards it lays down for the best palliative care possible deserve the support of all noble Lords.
Lord Elton (Con)
My Lords, I begin, as we all do, with thanking the noble Baroness and congratulating her on getting this slot. I also thank her for the enormous dedication, expertise and persistence with which she has pursued this task—this calling—of easing the way out of this world for so many hundreds of people. I should say that I come to this debate as a learner, not as a teacher. I am far from certain that I have grasped all the issues—I have certainly not grasped the final solution—but I would like to make a couple of observations and one suggestion.
My noble friend Lord Crisp was advocating greater openness in discussion about death. I reflect that, to initiate that, you need a largish community with a high average age containing a number of medical professionals and a scattering of clergy. Indeed, here we are, doing what he asked.
My interest and motivation, apart from that which all of our age share, comes from having contrasted the experience of a close friend of mine, whose death at home I observed, wonderfully supported by the local palliative care team, and a report from another friend of an appalling end of life where the person was for several days in such pain that, whenever the person was conscious, the bed was vibrating. That is an inequality which is absolutely insufferable in a civilised society.
Two images float into my mind that suggest how compassion enters into this. The first is the telephone answered after midnight for the noble Baroness, Lady Byford, when her husband was dying. The other was the bowl of porridge mentioned by the noble Lord, Lord Howard of Lympne, brought to a man coming from a hospital into a hospice and, I fear, on the way out.
The number and diversity of people involved in evolving a proper, coherent service seems to me one of the biggest difficulties, and there is the question of establishing communications between them, one with another. We are talking about professionals, who have the royal colleges, and clinicians, who have endless conferences around the world, all of them highly productive, but we are also talking about non-professionals, non-clinicians —care workers, paramedics, sometimes policemen or prison officers, all of whom have been mentioned. There is no forum for them.
It would be wrong to try to attempt that in legislation, but an early focus of attention after the Bill either goes on to the statute book or does not ought to be how to remedy that. How good are communications between different clinical commissioning groups? Should there not be a central, national forum for them—perhaps there is, I do not know, I am a novice—in which each group or cluster of groups could exchange notes on their practice? From the evidence that we have been sent and the stories we have been hearing, practice differs violently between one area and another.
There should be an established, respected and, I think, independent but supervised forum that could begin to generate a corpus of accepted best practice that could be shared around the country—indeed, across the nations; we have three nations represented here, and how much other groups seem to be able to learn from the Welsh groups. This is the beginning of that process. How it gets carried down to the next level of the variety of people involved is for another debate, and certainly for someone more learned in these things than I am, but I hope that we can get the fertilising cross-flow of experience between groups to begin.
Lord Quirk (CB)
My Lords, of course I, too, must begin by joining those who have thanked my noble friend Lady Finlay for presenting Parliament with this authoritative and timely Bill. There can be no one in this House, no one in this country, so well qualified in the whole area of palliative care, and we can be sure that every single detail in Clauses 2 and 3 of the Bill, for example, addresses issues that have been expertly identified by my noble friend in her personal experience as a clinician.
About 500 years ago, Francis Bacon memorably noted:
“Men fear death as children fear to go in the dark”.
He was using “men” in the gender-inclusive sense, of course. But I wonder why pharmacological progress in pain management, especially in the last half-century, does not seem to have mitigated or reduced this primeval fear of death. Perhaps it is because so little is known or understood of the comfort and relief that can be afforded by the current standard of palliative care when it operates at its best. Why else is there this trickle of desperate folk to seek terminal help in Zurich? Why else does a steady majority in this country, identified by opinion polls, favour the assisted suicide advanced by the noble Lord, Lord Joffe, and, in recent months, persuasively, by the noble and learned Lord, Lord Falconer of Thoroton.
The sad fact is that those with a good knowledge of current standards in palliative care know also how “patchily”, as my noble friend said, a high standard of such care is available in this country. We should, of course, be proud of our enviable record in this field—proud to be voted this very year, 2015, as the best in the world, just as we were in 2010. We should be proud of such selfless trailblazers as Sue Ryder and Cicely Saunders. Indeed, one of my own proudest moments as vice-chancellor of the University of London came when both these ladies accepted honorary degrees.
We can be proud, too, of our great charities, as the noble Lord, Lord Howard, noted. When in the late 1960s Dame Cicely approached Sir Isaac Wolfson, he and his trustees were enthused and began at once to join in the funding of this new wave of hospices. His son and successor as chairman, Leonard, later Lord Wolfson, was equally enthusiastic, as were a succession of trustees, such as the noble Lords, Lord Turnberg and Lord McColl of Dulwich, right down to the present, to the tune of many millions of pounds. The Wolfson Foundation has supported no fewer than 130 hospices across the UK, all reducing the fear Bacon spoke of, as, whether children or adults, we make our way into the dark.
Proud as we can be of this litany of praise and success, we have a very long way to go, and the rest of the world has relatively further still. Even in such a relatively well-provided area as London, the variation in provision from borough to borough is alarming. Such variation is gravely amplified when we look at the UK as a whole. In some quite extensive areas, patients seek in vain palliative care of the kind they need. This Bill specifies succinctly and authoritatively what needs to be done as a matter of urgency, and it surely deserves our wholehearted support.
Lord Carlile of Berriew (LD)
My Lords, I apologise to some noble Lords who spoke earlier, whose speeches I unavoidably had to miss. The noble Baroness, Lady Finlay, and I have stood side by side on the legislative battlefield on numerous occasions. I have always been willing to serve as her Baldrick, but when I use that comparison I do her an injustice because she is most certainly no Blackadder. Indeed, on all subjects, but especially on this one, she is very wise and knowledgeable, and I know that there are Members of your Lordships’ House other than myself to whom she has generously given private time when they have had issues around what we are talking about today. I support this Bill wholeheartedly.
This Bill is, of course, essentially about death. We should not have to feel gloomy about death in the way that seems so traditional in our country. I carry in my mind memories of my father’s death. I was lucky as I had a wise and wonderful father and his death was therefore a great sorrow to me. As I recall the last 24 hours of his life, every moment of which I witnessed, I can get almost a precise replay in my mind’s eye of everything that happened, everything that he said and all the thoughts that we exchanged before he was no longer able to speak, and it brings me great joy.
Today, 2,000 families in this country will face a death in the family. I wish that they could enjoy what I and, I believe, my father enjoyed on that day more than 25 years ago. My father did not want to die, but he was not afraid of dying. What occurred was almost the perfect end to life, but I am well aware that that does not happen everywhere.
Settings for death differ, and I have witnessed some of them. They include hospitals, nursing homes, residential homes and homes. I agree with the noble Lord, Lord Warner—wherever he cares to sit in your Lordships’ House—that if at all possible people should be able to die at home as long as home is the right place for them to die and the circumstances are there. Wherever possible, those circumstances should be provided. That is much of what this Bill is about.
Let us face it: in most cases death is predicted, at least within a relatively narrow timeframe. We prepare for birth over a period of nine months. We do not know exactly when the birth will occur, in most cases, but we are ready for it. We are ready to move as a family; we are ready to drop everything; we are ready to be part of a great family event at which we rejoice. I wish that we could do the same about death. In many cases, we can prepare for it and be at the side of the loved one who is departing from the family.
What has happened is that there has been almost a postcode lottery in relation to the way in which death is managed. In some parts of the country, provision has been very good and holistic; in other parts, and I have seen this too in my own family, it is, frankly, haphazard and disconnected, and you depend on the chance that there is at least one nice and sympathetic person present as the relative dies.
The Bill is about creating much wider knowledge and of creating training so that people are ready to deal with death. Dr Twycross, emeritus clinical reader in palliative medicine at Oxford University, wrote a very compact and telling letter to me about this. One of the things he said was that lectures are not enough, and that apprenticeships of an appropriate length and intensity are vital, particularly for doctors training to become specialists in gerontology, oncology, respiratory medicine, cardiology, neurology and pain medicine. I agree with him absolutely that training is about much more than lectures; it is about creating standards and knowledge. I believe that the noble Baroness’s Bill would help to achieve those high standards and good knowledge.
Viscount Bridgeman (Con)
My Lords, I am the last of many speakers today to congratulate the noble Baroness, Lady Finlay of Llandaff, on this, her latest contribution in her distinguished record of palliative care treatment in this country. I declare a non-pecuniary interest in having been for 11 years chairman of the hospital of St John and St Elizabeth in St John’s Wood, London, which, unusually for the hospice movement in this country, has within it St John’s Hospice, forming part of the same charity. In common with most other hospices of similar size—in this case, 22 beds—St John’s has contracts with a number of adjacent health authorities, in its case seven in north and west London. I have to say that patients who are near the end of their lives, whether they wish to spend their last days at home, in hospital or in a hospice, are liable to find themselves participants in a postcode lottery —rather surprisingly, in such a small area of London.
I shall give your Lordships some examples. Hospice at home is developed by many hospices. It is vital but it has administrative problems. Statistics show a slow but steady increase in end-of-life patients wishing to spend their final days at home. Some of the health authorities in the group pay for hospice at home but some do not. Some commissioning groups, which are the flagship of the innovations in the 2012 Act, pay great attention to palliative care but, regrettably, others—again, this is the experience of the hospice with which I am familiar—have palliative care low down on their list of priorities, a point that has been raised many times in this debate. Again, I refer back to hospice at home: here there are, more than ever, likely to be continuing problems of communication as most are elderly patients, many with varying degrees of dementia and of course in dispersed locations. In the catchment area of St John’s, several CCGs do not include in their team the post of palliative lead GP, a GP who, being especially experienced in palliative care, is ideally placed and qualified to ensure good communication with patients at home, and indeed good communication between hospice and CCG. Here again, some CCGs have this very important post and some do not.
A final example of the postcode lottery is the matter of contracts between hospice and health authority. In the St John’s group, only two out of seven health authorities have contracts for more than one year —in both cases, for three years. This is probably outside the scope of the Bill but the advantage to both parties is obvious with regard to long-term planning, and it is surely likely to be reflected in the treatment and facilities available to end-of-life patients with the right postcode.
How, therefore, is all this addressed in the Bill before your Lordships? I suggest that that very point I have sought to raise is addressed directly or indirectly in the Bill under Clause 2(2). In its 10 paragraphs there is in effect a series of minimum benchmarks of performance which I am confident should serve to raise minimum standards across the board and thereby go some way to eliminating the more glaring effects of the postcode lottery to which I have referred.
In conclusion, I must say a word about funding of the hospice movement, which has been referred to, particularly by my noble friend Lord Howard of Lympne. Traditionally the funding of hospices by Governments of all parties has varied widely, from 50% of operating expenses down to percentages in the 20s. The noble Lord, Lord Howarth of Newport, has of course referred to children’s hospitals, where funding is even lower than that. Therefore the shortfall has to be found from appeals and other fundraising events, and £1 million a year is probably the bottom-line requirement. I suggest that there is degree of cynicism on the part of government in all this. This is not a party-political point—it is common to all Governments. Every Government know that in the end virtually every hospice always gets its operating costs funded from somewhere.
I therefore say to the Minister: what a marvellous opportunity for the Government to show their appreciation for this marvellous movement, which, as the noble Baroness, Lady Finlay, has reminded us, leads the world, by at least raising across the board the average percentage of support which they are able to give.
Baroness Scotland of Asthal (Lab)
My Lords, first, I thank the House for allowing me to speak in the gap in support of the most marvellous Bill of the noble Baroness, Lady Finlay. She will know that I have been figuratively speaking by her side through all this, but rarely have I had an opportunity to add my voice, so I thank the House for that.
The expertise of the noble Baroness, Lady Finlay, has given us a great treat, because we have an opportunity to do that which will make a difference to so many. One of the tragedies, of course, is that so many of us fear death because of the possibility of dying in pain or alone. Yet each of us aspires to die with those who are with us, love us and care for us, and we hope to die without pain. The Bill, therefore, enables us to derive hope that those who will care for those in need at the moment of their death will have the skill and expertise to be able to give that which is needed. I agree with the noble Baroness, Lady O’Neill, that this is the right topic and at the right time. As the noble Baroness, Lady Finlay, said in opening, whoever a dying person is, whatever the time of day or night or day of the week, they will be able to receive high-standard care. That is the aspiration, and the Bill will help us to deliver it.
Both my parents died after having suffered a severe stroke and after a long period of illness—one for more than a year and the other shortly before that. Yet, as we have heard from the noble Lord, Lord Carlile of Berriew, for me it was the most extraordinary journey to go on with them. I saw strength, care and love, and I too will never forget that. However, both my parents did not die in this country but in the country of my birth, Dominica, where they had no benefit of the National Health Service, and where my family had in effect to create a hospice. I would like to see us here in the United Kingdom make sure that every individual has an opportunity to die not in fear but surrounded by those who love and care for them. The Bill will enable us to do that if we choose to do so. I hope that this House will choose to do that.
Lord Hunt of Kings Heath (Lab)
My Lords, the Opposition warmly welcome the Bill. I hope that it can make progress and get to the other place in time to get on to the statute book this Session.
Clearly, we have much to be proud of in palliative care—in the hospice movement, in particular, but also in parts of the NHS. However, the ombudsman’s five key themes make salutary reading. Frankly, in many places people are not recognised as dying and therefore the service is not responding to their needs. There is poor symptom control and poor communication. There are also inadequate out-of-hours services, poor care planning and delays in diagnosis and referrals for treatment. As my noble friend Lord Turnberg said in yesterday’s palliative care debate, there is no shortage of guidelines. An enormous number of guidelines is available; the conundrum is that they are not being implemented consistently. The question that we want to put to the noble Lord, Lord Prior, is: what can be done to ensure much greater consistency? I know that NHS England has established palliative care networks across England which are meant to support improvements in palliative care and share good practice, but I hope that the noble Lord, Lord Prior, will be able to report on progress.
I also want to ask the Minister about staff training, which a number of noble Lords have mentioned. We often depend on many young doctors, nurses and care workers, but inevitably they may be ill prepared to deal with death. They certainly need support. I thought that the BMA’s submission to noble Lords on that was very interesting. It says:
“Caring for dying patients will always be difficult for doctors, regardless of their level of experience”.
It continues by saying that,
“doctors are not being equipped with the right tools to provide this care”,
and it refers to the review undertaken into the Liverpool care pathway, which,
“found that medical training in palliative care was inconsistent, and often inadequate, resulting in a large number of junior doctors feeling ill-prepared to care for dying patients at the beginning of their careers”.
That could also apply to nurses and other care workers. Again, I should like the noble Lord to say what the Government can do to get consistency in training.
My third point concerns leadership. The Health Select Committee in the other place recently said that evidence provided to the committee showed a clear lack of leadership at national level—at the centre of government —in relation to end-of-life care. It recommended that:
“The Department of Health and NHS England should ensure that end of life care is prioritised and embedded in future planning at all levels”.
Noble Lords have already mentioned the other recommendation concerning the identification of,
“named individuals who will be responsible for ensuring that the new approach to end of life care … is delivered nationally”.
Again, I ask the noble Lord whether the Government accept that recommendation.
The noble Lord, Lord Prior, in a very sympathetic response yesterday, put a lot of eggs into the CQC basket. Of course, we will have to wait to see the outcome of this work, but I was struck by the fact that he did not mention clinical commissioning groups. A number of comments have been made today about commissioning. Clearly, there is an inconsistency. We have to be honest and say that the capacity of CCGs to commission services is often very limited—they do not have the people with the expertise to do it. Does the noble Lord think that the situation might be better solved by having a national strategy in which a template as to what should be commissioned locally is required by CCGs? That would be entirely consistent with the terms of the noble Baroness’s Bill.
On funding—a point referred to by the noble Lord, Lord Howard, and the noble Viscount, Lord Bridgeman, in particular—there are two issues. One is the level of funding and the second is what I would call stability. The points on the level of funding have been well made, but my experience is that one of the problems—I speak as a supporter of Birmingham St Mary’s Hospice—is that hospices often do not know very much in advance how much they are going to get. Indeed, often they do not know until after the start of the financial year. I would have thought that one instruction that Ministers could give would be that hospices should be entitled to a three-year rolling contract so that they know exactly what they are going to get and can plan ahead. The figures given to them are, frankly, so low compared to the entire NHS budget that I do not believe it is unreasonable to ask clinical commissioning groups to do it. I think they often forget what it is like to be an organisation that is not certain of its funding. They get their funding—it might be tight but there is certainty of funding—but for hospices, there is no certainty of funding. At the very least, they ought to know and be able to plan ahead.
Time presses on, but I hope that the Minister will say that the Government are also going to accept the recommendations of the Health Select Committee on free social care, and I echo the point raised by my noble friend Lord Warner.
One thing I would ask the noble Baroness, Lady Finlay, is about the implications of the duty in the Bill compared to the general duties laid on the NHS in other Bills. If I were a Minister I would probably ask her what the hierarchy of importance is. I do not know whether we could explore this in Committee or whether the noble and learned Lord, Lord Mackay, and my noble and learned friend Lady Scotland might perhaps be able to help with an appropriate amendment in relation to that.
We wish this Bill well. I hope that we will have time for a proper Committee stage, as there are clearly a number of issues to be discussed. However, we wish to send this Bill on, with progress, to the other place.
The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con)
My Lords, first, I join with everybody else in thanking the noble Baroness, Lady Finlay, for raising this issue and bringing the Bill before us. She has a long history of passion, commitment and experience in this area, and we all recognise that. There seems to be violent agreement from all sides of the House on the substance of her Bill, and so I congratulate her on the support that she has garnered, which of course goes way beyond noble Lords in this House.
Before I address the Bill directly, I want to draw out three themes that have emerged out of the debate today. The first is that, despite the report from the ombudsman and some very upsetting individual stories, the UK does pretty well in this area. My noble friend Lord Howard referred to the report in the Economist. For the second time—the first being five years ago—out of all 80 countries surveyed, the UK came top, and that includes all the richer nations. We come significantly higher than most other European countries. In part, that is because the hospice movement in the UK has been extraordinarily successful. My noble friend Lord Howard referred to the CQC report. It is quite extraordinary that 90% of all hospices inspected have been “good” or “outstanding”.
However, in praising the hospice movement and the care that it delivers at home, let us reflect for a minute on how difficult it is to provide good-quality palliative care in a very busy acute hospital. It is true that they probably do not do it as well as it is provided in hospices, but, given the circumstances, they often do a remarkable job. My noble friend referred to the bowl of porridge that was provided in a hospice. I refer him to the Wrightington Hospital, where a lady coming near to the end of her life said that her one last wish was to see her horse. They brought the horse to the hospital and wheeled her down to see it. We do see these extraordinary acts of kindness and compassion in NHS hospitals as well. That is the first point that I would like to make: the UK does this pretty well.
Secondly, the most important point to come out of today’s debate is the patchiness of how we do it. Variation, I am afraid, is a problem that runs right through the NHS. The noble Lord, Lord Davies, went right back to 1946. Whether it is in end-of-life care, orthopaedics, stroke care or cancer care, there has been this level of variation since the inception of the NHS in 1946. The way that this Government have decided to try to confront this level of variation is through transparency.
It is a fact that, outside healthcare, the only way to drive out variation is through a market—we all know that. If you have choice and competition, they will drive out variation. It is much more difficult in an area such as healthcare, where there is such imperfect information and such imperfect choice. Our approach is to try to confront this issue of variation through transparency. It is not just through CQC reports but through having a much more open culture within the NHS. I say to the noble Lord, Lord Warner, that choice is also a key factor in that, where it is possible.
The third key theme to emerge from this debate is the importance of out-of-hospital care. Where we can deliver good-quality, safe care outside hospital, it tends also to be at lower cost. If it is at lower cost, we have more resources to spend elsewhere in the system. I say in response to my noble friend Lord Howard that I know that Hospice UK is in discussions with NHS England about whether it can help us deliver more care outside hospital. Other noble Lords referred to the huge importance of district and community nurses. Delivering out-of-hospital care to people who are at the end of their lives requires considerable expertise; you need district and community nurses on hand to administer pain relief and the like. In the case of my own mother, who died very recently in an NHS hospital, it was essential to have people there all the time who could adjust the level of pain relief, oxygen and the like.
Those were the three general points that I wished to make. I am afraid, however, that the Government cannot support the Bill and I will set out the reasons why. The most important reason is not that we disagree at all with the underlying intention of the Bill—we are in full agreement with it—but that we do not feel that primary legislation is the right way of tackling the issues raised because it could lead to unintended consequences. Most importantly, we feel that it attempts to deal with issues that, in the main, are best tackled by clinicians, ideally together with patients, carers and loved ones, based on a combination of the patient’s individual condition, preferences and the clinician’s professional expertise.
There is no other part of the healthcare system, be it cancer, stroke, maternity—the beginning of life as well as the end of life—where we have the mandated system that is proposed in the Bill. I will withdraw the following analogy if it is not fair. When the Liverpool care pathway was introduced—I was a huge supporter of it—there many parts of the country and many hospitals where it was implemented sensitively and where it contributed greatly at the end of many people’s lives. Yet, because in some parts of the system it became a tick-box solution where people were ticking the box and missing the point, I sometimes feel that a top-down, central directive, be it through legislation or from another source, can interfere with best-practice decision-making. That is the primary reason why we oppose the Bill.
However, there is a second reason—it is probably less strong, but it is strong nevertheless. It is that we feel that the Bill goes against the whole concept and principle of local autonomy that was established in primary legislation through the Health and Social Care Act 2012. I accept that clinical commissioning groups are still in their infancy—they have only been there for just over two years—but they are bound by a duty to commission health services based on the assessed needs of their local population, and palliative care is included in that stipulation. There is also concern that legislation on this issue as set out in the proposed Bill could stifle local innovation by NHS bodies, including commissioners, as they seek to improve the quality of care and provision.
As well as the responsibilities given to the local commissioning bodies, the 2012 Act also enshrines specific responsibilities for health education and training on Health Education England. This Bill would supersede those provisions, thus undermining the role and responsibilities of Health Education England, which works in partnership with local training and education boards to commission and deliver appropriate training and education.
I could go on and talk about what the Government are doing in this area, but that is the fundamental point and I should probably leave it there. We have huge sympathy for the underlying intent of the Bill.
Lord Elton
My noble friend has put local autonomy at the centre of his argument. If local autonomy results in unacceptable variations between localities, will the Government be on the look-out for this? It has only been running recently, as my noble friend says, but will he keep it at the forefront of his watch? If it increases or does not diminish, then something will have to be done about local inequalities.
Lord Prior of Brampton
My noble friend makes a good point. There is tension in the health service between local autonomy, local accountability and the National Health Service. There has always been this tension. We believe that in driving up standards it is best to have the local autonomy. However we must also have transparency so that we know who is falling behind and who is forging ahead. As to transparency at a clinical level, I was talking to a former president of the Royal College of General Practitioners recently—she comes from a different political background from myself—and she said that within the DNA of all doctors is a huge sense of competition: they want to deliver better care than the next-door doctor. That is true of surgeons probably more than anyone, but also true of GPs, physicians and hospitals, and increasingly it will be true of CCGs as well. My response to my noble friend is that we are embedding a much higher degree of transparency into the system and it is through that transparency that we will drive improvement by highlighting the best and the worst.
Lord Davies of Stamford
On the matter of transparency, does the Minister agree with my point that it is important that the commission should be transparent vis-à-vis the patient and that there should be a policy of full disclosure to the patient of the diagnosis, prognosis and any implications involved or deriving from changes in treatment or changes of venue from, for example, hospital to hospice or otherwise?
Lord Prior of Brampton
I accept and agree with that. One should not underestimate that even sophisticated, well-informed people put huge trust in their clinicians. How many of us, confronted with a difficult diagnosis, say, “What would you do?”. That is the question that most people put to their doctors. Of course individual choice is extremely important, but the role of the clinicians and the trust that we as patients put into them should not be underestimated.
In conclusion, let me reiterate how much we support the underlying intent of the Bill but that we do not believe that legislation is the right way to address the problems that the noble Baroness has outlined.
Baroness Finlay of Llandaff
My Lords, I am most grateful to everyone who has spoken in this debate. They prepared for it carefully and highlighted the inequities in provision. I thank all those who support the Bill. I believe that patients and relatives out there, hearing that the Government do not support legislation that would drive up standards of palliative care provision, will be horrified. This has not been plucked out of the air. In Wales we have been doing this for seven years. It is a template as the result of a natural experiment between England and Wales. Through the Bill, we are trying to share best practice.
The Bill is indeed only skeletal. Since coming to this House, I have learnt that you do not put into a Bill what can go in guidance. The issues that have been raised by Peers over possible amendments I would certainly expect to see set out in guidance because that is the right place for them. The reason is that systems change over time, healthcare professional responsibilities change, and you do not want to be locked into something that becomes archaic.
This is not the Liverpool care pathway in another guise. In fact, I have to say publicly that we did not adopt the Liverpool care pathway in Wales because we predicted that it would run into trouble. We developed a slightly different, modified system of our own.
The principles of the Health and Social Care Act 2012 have to work out, and over time they will, but this Bill will not stifle innovation. In fact, it will make sure that there is innovation because research has set out in the Bill. It will make sure that those who provide specialist care have to keep up to date with what is going on and participate in research. No longer will they be able to duck out of it using all kinds of weasel words and excuses about wanting to protect patients from people who want to find better ways of care and thus improve it. Those people are called researchers who, like those at the Cicely Saunders Institute, have delivered most of the data to provide the transparency the Government want. I am greatly indebted, particularly to Dr Felicity Murtagh, Professor Irene Higginson and other colleagues there, who have provided me with an enormous catalogue of evidence to check out what is in my Bill.
As for consent and control, we already have the framework in place. No one should be treated against their wishes, so we have a framework that enables people to make advance refusals and statements of wishes. They can do it now, when they are well and long before disease strikes, and they can make changes if they change their mind. That is what the Mental Capacity Act 2005 is all about. It ensures that no one is treated against their will. I know that I now have an uphill struggle in trying to get it properly implemented, but it is a challenge that I take on willingly and I am humbled at being given the chance.
I am also alarmed at the thought of care being discriminatory against people on the basis of age and so on. As for people wanting to be cared for at home, I am cautious about anything that tries to put into legislation specific pathways of care because people change their mind. I have had patients change their mind about what they want and where they want to be in their dying moments—not about the place of care, but even about trying chemotherapy or asking for a second opinion about surgery. We have to be flexible all the time with our patients until they are dead because they may change their mind about what they want in the last few minutes. It may be a minor issue, such as whether the family is in the room or out of it, but those wishes need to be respected.
I am saddened that some have tried to link this Bill with the debate on the Assisted Dying Bill. The House of Commons looked at the proposal for physician-assisted suicide very comprehensively and has spoken very clearly. That Bill is unsafe and should not be brought back into either House of Parliament. It is actually an abuse of the House even to think about doing so. If people want assisted suicide, then go away and write a Bill that is safe, but do not saddle doctors in palliative care with it. They are the group that wants to provide better care and do not want to be involved in such a process. Those doctors also have the right to behave ethically and to do what they want for their patients; they do not want just to give in to demands.
I am also saddened that the Government have been so blunt; they will not even look at ways to improve the situation. We will watch the position over time. I hope that the Bill will have a Committee stage because I want to debate some of these issues further, and I also want transparency. But above all, I want every person dying in this country to be secure in the knowledge that they will get the care they need, but I am afraid that the response I have had today from the Government does not give me that assurance.