Access to Palliative Care and Treatment of Children Bill [HL]
Thursday 9th January 2020
(4 years, 10 months ago)
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Access to Palliative Care and Treatment of Children Bill [HL]
Friday 7th February 2020
(4 years, 9 months ago)
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Baroness Finlay of Llandaff (CB)
My Lords, I declare my interests in palliative care, including as vice-president of Marie Curie and of Hospice UK and other roles declared in the register. I particularly welcome the noble Lord, Lord Brownlow of Shurlock Row, who has chosen this Bill for his Maiden Speech.
Let me make it clear: this has nothing to do with assisted dying. My Bill aims to solve two problems for the Government. The first is the ongoing variable access to hospice and specialist palliative care, with even less available out-of-hours. The second is to try to avoid some of the very distressing cases that have gone to court where there is disagreement between the clinical team and deeply distressed, loving parents over the best course of action in the management of a child with a serious life-limiting condition.
I will start with palliative care, which the Conservative manifesto committed to support. Last year, over 492,000 people died in England. It is estimated that, at any time, about 0.75% of the population will have palliative care needs, because the majority of those dying will have a significant terminal phase to their illness. Yet about one-third do not receive palliative care when they need it, particularly those with non-cancer diagnoses, or who are from marginalised communities, LGBT+ or of black and ethnic minority heritage. Those facing death are not just older people. Currently around 49,000 children and young people under 18 and over 55,000 young adults aged 18 to 40 are living with a life-limiting or life-threatening condition; almost 13,000 are aged 18 to 25. Even excluding oncology patients, this prevalence had risen by one-third in a decade, yet palliative care support for these young people is even more patchy than for older adults or small children. That is why the Bill covers all ages.
We know what to do, but we are just not doing it. I am grateful to the Minister for meeting me. I fear she will say that the Government feel they can achieve improvements without legislation, but it has not happened for decades. Major health improvements sometimes need the jolt of legislation and this is one of them. Two examples are smoking cessation, which needed a ban on advertising and smoking in public places, and wearing seat belts in cars. In recent years, many reports have highlighted deficits in palliative care provision, referred to in the many briefings which have been supportive of the Bill. The ombudsman’s report, Marie Curie’s research into inequitable care, and the BMA’s qualitative, in-depth study into end-of-life care are examples. Despite 20 years of strategies and policies, my own inquiry five years ago revealed a 40-fold variation in indicative budgets from clinical commissioning groups, ranging from under £50 to almost £2,330 per palliative care patient per annum. Yet almost half the respondents had no plans to update or review their palliative care provision.
Now it is no better; the End of Life Care Coalition found that 18 of 44 sustainability and transformation plans do not even mention end-of-life care, let alone how they would improve it, and only 40% of clinical commissioning groups provided Marie Curie with data on fast-track packages of care. Following Second Reading of a previous iteration of the Bill, the Minister kindly wrote to me confirming that there is a statutory duty to provide maternity services. Indeed, the duty is far wider than only for the ubiquitous experience of being born. In Section 3(1) of the NHS Act 1977 the general duty on the Secretary of State to provide
“to such an extent as he considers necessary to meet all reasonable requirements”
has a list which includes
“such other facilities for the care of expectant and nursing mothers and young children as he considers are appropriate as part of the health service.”
A notable aspect of the way this list is written is that it focuses on the diagnosis, treatment and aftercare of those who have suffered from an illness. In 1977, there was a deep culture of death denial. When services only strived for cure, death was a failure. Indeed, only 10 years earlier Cicely Saunders had opened her hospice—St Christopher’s—and had begun to shine a bright light on the need for medical research to improve the care of the dying. From that beginning, the hospice movement came about outside the NHS and gradually, as the benefits of all it does became evident, the specialty of palliative medicine was recognised in 1989, 12 years after the 1977 NHS Act mandating maternity care. Now it is time to update the obligations of the NHS and end excessive reliance on voluntary donations to provide care for the only other universal experience after birth, which is death.
Hospices renowned for excellent care have sprung up across the UK. Outreach teams go into people’s homes and hospital support teams transform patients’ experience when faced with a terminal illness. All too often, that is at the time of diagnosis. We all recall our much-loved colleague Lady Jowell and her powerful advocacy for research moving the frontiers of knowledge to improve care and outcomes. Systematic reviews, including one I co-authored, have shown the outcome benefits and cost efficacy of palliative care teams. These services are concerned with far more than just the last days of life.
NHS England has estimated that improved recognition of palliative care needs and services outside hospital could improve care and reduce hospital costs by £180 million a year. Previous iterations of this Bill contained more detail—detail that is better in accompanying guidance. The Bill would ensure that those commissioning services meet the duty to reduce inequalities, as required in Section 1C of the National Health Service Act 2006. It reinforces current strategies, such as the “Ambitions” framework, to meet the Government’s commitment, in “Our Commitment to you for end of life care” and the comprehensive personalised care model, to end variation by 2020. It fulfils the pledges of the NHS constitution and the rights of patients to care appropriate to their needs.
Last August’s announcement by the Prime Minister of a welcome £25 million to be administered through sustainability and transformation partnerships is a one-off grant. Unless changes are incorporated in strategic plans, as Clause 4 of the Bill requires, improvements will not be sustained. Clause 2 would ensure that a hospice with in-patient beds can access supplies from the drug tariff. There is a wide variation in how hospices access the medication and supplies they need, especially out of hours. Hospices with adequate pharmacy support can provide expert advice on medicine management, particularly for complex treatment regimes, reduce prescribing errors and ensure safe medicine supply and disposal.
Some 27 years ago my hospice was the second in the UK to take on a part-time pharmacist; in her first two years she saved more than the cost of her salary. Now, although many hospices have pharmacy support, the arrangements with CCGs are very variable, ranging from nil to more than 67 hours a week, but many cannot access GP or hospital records. I have been given examples of hospice drug costs being halved when supply was transferred from an FP10 model to a full hospital pharmacy supply.
I turn to the difficulties and tragedy of children who are imminently dying, where conflict results in an application to the High Court under the Children Act 1989. The wording of the Bill has been developed following several publicised cases where the parents of a child with a life-limiting prognosis sought other treatment options. Sometimes, communication broke down to such an extent that court action was instigated over proposed treatment or treatment-withdrawal decisions, or to prevent transfer of the child’s care to another reputable provider. I am grateful to Chris Gard and Connie Yates, here today, who generously shared their experience to try to prevent others going through what they experienced, when a polarisation of views made it all the harder for clinicians and Charlie’s parents. They had sought a three-month trial of an oral supplement costing £3,000, with a suggested chance of success of more than 50%. They knew it could fail, yet legal fees of more than £l million, a media circus and acrimony ensued. Three years after Charlie’s death, his mum says, “I just wanted to know we’d done everything we could.” Such grief does not fade.
Legal action has many detrimental effects. It exacerbates failures of communication, increases stress and has long-term mental health sequelae. Clause 2(2) states that independent mediation must be offered early by the hospital when views are diverging before proceeding to court. Mediation, voluntarily undertaken and with information shared openly between clinicians and the parent or parents, can ensure that parents feel listened to and are less intimidated by the power differential of clinicians with complex medical knowledge. Options for a second opinion can be discussed. Of course, if mediation fails for whatever reason or the child needs urgent life-saving interventions or abuse is suspected, subsection (2) would not apply.
Some major clinical decisions are terribly difficult. Overall, treatment or an intervention is ceased because no therapeutic goal is being achieved or the intervention has become excessively burdensome. Similarly, a proposed intervention that poses disproportionate risks of significant harm would be withheld or the risks minimised by transferring the child to a more suitable setting. However, often things are far from clear-cut. They must be carefully weighed in the balance of harms against benefits, but risk aversion must not deny realistic hope. Prognosis is an inexact science and the ways a child adapts to progressive disability are unpredictable.
When deciding the best interests of the child, all aspects of the child’s life and experience must be considered. When the child can express wishes and feelings, these are paramount. When they cannot, it is the parents who normally know the child extremely well, and are aware of the child’s wishes and feelings, aspects that comfort the child and the way that the child feels valued. While the child is alive and therefore has interests, those interests are unique to that child; but all interests cease on death.
Clause 2(4) would give appropriate weight to parental views in the court process, in line with societal and medical norms, in the weighing up of the benefits and disbenefits of a proposed course of action. I am most grateful to the noble Baroness, Lady Jolly, for sharing with me a draft amendment that may help clarify this in relation to disproportionate risk of significant harm and improve this subsection, which I know has caused some concern. The subsection does not form a court direction. It is compatible with the Children Act, which emphasises the crucial importance of the child’s interests, wishes and feelings. It allows the healthcare provider to have the chance to show that a different treatment plan is in the child’s best interests. It does not give precedence to one parent’s view over another; the court must decide on an individual basis, as at present.
This Bill solves two major problems for the Government. First, it can show that they are determined to ensure good palliative and end-of-life care for everyone, everywhere, at all times of the day or night. Secondly, it would resolve some distressing disputes between loving parents and clinicians, rather than proceeding to court. I beg to move.
Lord Ribeiro (Con)
My Lords, it is a pleasure to follow the noble Baroness, Lady Finlay, who has devoted a lifetime to the care of the dying. I thank her for initiating this important debate. It is a pleasure to be able to support this Bill.
As a surgeon, one of the most difficult tasks in cancer surgery was deciding how best to approach a patient on whom you have operated in the hope of achieving a cure, only to discover that their tumour is inoperable. One can buy time and offer radiotherapy or chemotherapy, but inevitably the cancer will win through and the patient will face an uncertain future.
I faced this dilemma in my first month as a surgical house officer when I did not know how to control a patient’s pain after surgery. In those days, we called it an open and shut laparotomy because of the inoperable cancer in the abdomen. Distraught by his suffering, which did not respond to the four-hourly doses of pethidine I prescribed, I turned to the ward sister for help. There was a pause. “Morphine”, she said. It eased the patient’s pain, and they died peacefully.
Dame Cicely Saunders founded the first St Christopher’s Hospice in south-west London in 1967 —the year I qualified. In 1958, she wrote:
“It appears that many patients feel deserted by their doctors at the end. Ideally the doctor should remain the centre of a team who work together to relieve where they cannot heal, to keep the patient’s own struggle within his compass and to bring hope and consolation to the end.”
We would all wish that hope and consolation for ourselves at the end, and that is precisely what the hospice movement has endeavoured to provide over the last 60 years.
As our population ages, more people are reaching an age where the demand on emergency services grows. It is estimated that in 2016 there were 1.6 million emergency admissions for people in the last years of their life. This is a huge burden on hospitals since they account for 30% of all admissions, costing the NHS £2.5 billion. Hospitals should be places for treating patients and, hopefully, curing them. They are not hospices for the care of patients needing terminal care. The provision of hospices nationally is such that many hospitals cannot avoid becoming hospices, for lack of these services.
We need more community-based care to support demand. The Bill is welcome, as it rightly asks for such care to be commissioned in the same way as other care, by the clinical commissioning groups—CCGs. Marie Curie, to which I am grateful for its briefing, estimates that without properly commissioned palliative care by CCGs, the cost of providing emergency admissions for patients in the last year of life is likely to increase by £1.6 million by 2041. We do not have the capacity to meet the extra beds required to support this need, particularly when innovations in medicine and surgery are designed to reduce patients’ length of stay, and while maintaining staffing levels is a continuing problem.
There is no clear national strategy for end-of-life care, and, despite the early pioneering work of Dame Cicely Saunders, hospitals are supported in the main by charities and the public, with the NHS providing about a third of the cost of adult hospices. I believe there are 200 hospices in the UK collectively caring for 225,000 people and their families per year, 80% of which is delivered in the patient’s home. It is time to provide a comprehensive nationwide service from which all can benefit, through the CCGs.
The Bill will ensure that access to hospice care is not determined by a postcode lottery where some areas are better provided for than others. It is important to recognise that many hospices will be running a deficit budget in 2019-20. As the noble Baroness, Lady Finlay, observed, the Prime Minister’s announcement in August 2019 that £25 million will be made available to hospices and palliative care services in England is to be welcomed, but it is non-recurring. It will fix the roof while the sun is shining, but without sustainable funding it is unlikely to fix the roof long term.
A National Health Service which delivers care to all at the point of need should also be able to do so for those at the end of their lives through a better-funded and provided-for hospice service. Perhaps the phrase “from cradle to grave” should have renewed meaning as we all get older and the demand for end-of-life care increases. I believe that the Bill will go a long way to deliver these aims, and I am delighted that it has wide and strong support from the BMA, Marie Curie, Hospice UK and, I hope, your Lordships.
On Clause 2, which has been mentioned, earlier this week, along with the noble Baroness, Lady Finlay, and the noble Lord, Lord Sheikh, I met Connie Yates and Chris Gard, who is here today. They are the parents of Charlie Gard. I was impressed by their quiet determination to avoid legal challenges in these cases which serve only to divide and entrench opinion. Their plea for mediation before litigation, put so eloquently by them on the “Victoria Derbyshire” programme yesterday, puts a human face on a problem that one must address to prevent others suffering the same fate. The BMA has raised concerns about Clause 2(4), believing that any medical treatment proposals put forward by any person holding parental responsibility for a child are in the child’s best interests. It believes that this may expose children with life-limiting illnesses to unproven or sub-optimal treatments. It is important to be clear where the balance of responsibility for treatment lies—with the doctors responsible for the child’s care or with the parents. I am sure that we will return to this thorny issue in Committee and I look forward to considering the amendment to be tabled by the noble Baroness, Lady Jolly.
With those reservations, I am pleased to give this Bill my full support and I thank the noble Baroness, Lady Finlay, for introducing it.
Lord Hunt of Kings Heath (Lab)
My Lords, it is a great pleasure to follow the noble Lord, Lord Ribeiro, and to lend my support to the Bill. I declare an interest as a supporter of St Mary’s Hospice in Birmingham. I will focus on palliative care, but I also support the second part of the Bill in response to the heartrending cases that the noble Baroness, Lady Finlay, mentioned, where disagreement arises between doctors and patients over the treatment of life-threatening illnesses suffered by children. She makes a powerful case for parents and doctors to have early access to mediation. Perhaps the Minister might agree to the possibility of funding a pilot programme to examine whether this might be a sensible way forward.
Like other noble Lords, I have received a briefing from the organisation, Together for Short Lives, which has some reservations about the wording of Clause 2(4). Its initial analysis is that this provision might qualify what we understand as the child’s best interests. I think that the organisation has been in subsequent discussions with the noble Baroness and that it now understands the motivation behind what she is offering, but it would be helpful if she could say that she will be in further discussions with it between now and when we reach Committee.
On palliative care funding, I support the main thrust of what the noble Baroness and the noble Lord, Lord Ribeiro, have said. We have a problem with palliative care in this country which is not confined to the funding of hospices; it is about the way the NHS organises palliative care and what happens in care homes. Overall, we do not have a comprehensive palliative care service, and the way I see it, the Bill aims to do just that.
The noble Baroness made some important points about access by palliative care providers to pharmaceutical services. Again, the BMA supports that, and I support its comment that clinicians providing general palliative care advice should have access to specialist care at all times. The other evidence I have looked at is from the Association for Palliative Medicine, which certainly knows what it is talking about. It has warned that access to palliative care services are poor for those of black, Asian and minority ethnic backgrounds and for older people. This is a well-remarked concern about palliative care which, again, argues for a much more consistent approach, and the noble Baroness’s Bill points us in the direction of how we might achieve that.
I will refer to St Mary’s Hospice in Birmingham because the challenges it is facing are very relevant to those being faced in all parts of the country. Over the past 12 months this extraordinary place has supported 1,756 individuals living with a terminal illness. That case load has risen by 30% over the past five years. The hospice has looked at future projections and it expects demand to rise again over the next decade or even longer. The problem is that NHS funding has not risen to the same extent. Birmingham has had to reduce its service and the number of in-patient beds from 20 to 15 as a result. It costs £8.5 million per year to run the hospice; NHS funding amounts to 36% of this. Rising costs, particularly of drugs and pharmacy services, are not fully covered by the grant that comes from the NHS.
I said that St Mary’s Hospice is a wonderful place. I should have said it is a wonderful concept, because most of the work it does is in the community. It has developed the concept of satellite sessions, particularly in the inner city of Birmingham. The noble Lord, Lord Howard, came and spoke about this exciting new development to a reception we held in your Lordships’ House a year or two ago. It has a case load of 500 patients living in the community at any one time. When you compare the wonderful service it gives with the fact that too many people—the estimate we have at the moment is 54% of people—are dying in hospital, when most people express a wish to die at home, we clearly have some major problems.
I pay tribute to the NHS, because there is a pan-Birmingham approach. St Mary’s Hospice has been given a leadership role across Birmingham and Solihull Clinical Commissioning Group to work with partners to plan and transform the delivery of palliative care and address some of the challenges I have talked about. They have a shared vision which aims to identify everybody who might benefit from palliative care, to enable more people to live independently and to reduce overreliance on specialist and acute resources. That is just in the right framework. I think the Minister will agree that it fits into the philosophy of the NHS long-term plan and is something to be supported. I hope that Birmingham and Solihull CCG and STP will be able to look at this carefully and provide the wherewithal to enable it to happen. Clearly, at the moment patients in acute hospitals or the care sector are really missing out on the kind of service we know could be delivered if we could only shift the resources around in a more effective way.
The Prime Minister’s announcement in August of an additional £25 million investment was, of course, very welcome indeed, but I echo the noble Lord, Lord Ribeiro: it would be very helpful if this could become an annual payment rather than a one-off. The Government are reluctant to intervene in the NHS but in this area they need to tell the NHS to get real about funding, to stop having annual contracts and to have long-term, running contracts so that hospices know three years ahead the amount of money they have. When we come to the Second Reading of the NHS Funding Bill, the Minister will talk about the certainty she has given the NHS over five years. I think the Government should give certainty to hospices as well. I very much support the Bill.
Baroness Jolly (LD)
My Lords, I, too, support this Bill. I endorse what the noble Lord, Lord Hunt of Kings Heath, has just said and congratulate the noble Baroness, Lady Finlay, on coming so high in the ballot and getting an early slot in the parade of Private Members’ Bills. I am grateful for the many briefings that I have received. I warn the Minister that the noble Baroness, Lady Finlay, is a tenacious individual. Should the Minister decline the Committee stage, for which I have an amendment ready to go, the noble Baroness will return next year, as I am sure will many of the noble Lords speaking today. We will not let this issue drop. The response from the Government last June was unconvincing and disappointing. I fail to see how the Minister today can come up with something that will not satisfy.
As has been stated, Clause 1 of the Bill applies to palliative care and support. Midwifery services are available from the state and mandated in legislation. They are freely available to all women. It seems strange and anomalous that end-of-life services do not enjoy the same ease of access and availability of medication to treat pain and prevent suffering. Why should those of us who choose to end our lives in hospices be treated differently from those who find themselves at home or in a hospital when they die? At the end of our lives, we should all have care that is totally person-centred, not one size fits all, whatever our age, colour or creed. Hospices should have the same level of access to pharmaceutical support as settings where NHS clinicians provide care. That should be the responsibility of the local commissioning body—the CCG—as recommended by the noble Baroness, Lady Barran, when she summed up the last Second Reading debate on this Bill.
I was struck by the point made by Marie Curie that 6 million of us will die within the next 10 years. Commissioners need to face that and plan accordingly. It is not something that should just happen. It is a really big number—I think that it is something like 20,000 a day, which is an awful lot. Many of us would choose to die at home, but for many reasons that is not an option.
As a society we must think more about our deaths than we do currently. Good end-of-life care is expensive and not always available from some CCGs. That should not be the case. A good death should not be a lottery. It should be a right, not an accident of where you die. That anomaly needs sorting and I hope that the Minister will not disappoint. A clarification of the department’s thinking on this would be appreciated. If the Minister is not able to offer that now, I would be grateful if she could add it to my letter.
Clause 2 clarifies the situation when treating children with a life-limiting illness. In advance of the previous incarnation of this Bill, I had the privilege of meeting the parents of Charlie Gard, who died so tragically, in the gaze of the public in a media storm, nearly a week short of his first birthday. They were determined that no family should be put through the torment that faced them when there was an impasse between the interests of the child and parents and the clinician and hospital. There was no mediation. Noble Lords will remember the tragedy unfolding on our screens almost hour by hour. Dignity and mutual respect vanished for the dying child, his parents as helpless witnesses, and the clinicians. The Bill of the noble Baroness, Lady Finlay, remedies that, but I am sure that the Minister will tell us that it should be happening anyway. We know that and I am sure that in hindsight everyone involved in Charlie’s care knows that, too, but it could happen again unless there is legislation that states clearly how such a situation should be better handled.
I hope that the Bill is committed after this Second Reading debate, as I have an amendment ready to table. The noble Baroness knows that and believes that it sits well within her Bill—I am grateful for her endorsement today. Many organisations in their briefings have expressed concerns about Clause 2(4). My amendment would insert after Clause 2(4):
“Any medical treatment proposals put forward by any person holding parental responsibility for the child must be considered by the court, unless contrary evidence is established that the proposed treatment poses a disproportionate risk of significant harm.”
The amendment would ensure that the court is able to prevent a proposed action where it is not in the best interests of the child—in other words, when it is clearly established that the proposed action or medication would cause significant harm. Such harm should be clearly established to outweigh the harms from the alternate proposed course of action.
Fortunately, very few of us have found ourselves in the position of watching a child die. I lost a cousin before his first birthday, well over 60 years ago when I was a small child, and I still remember the impact that it had on the extended family. My mother never forgot his birthday and his parents still remember it now. We owe it to society that any palliative care that is given is properly commissioned. In the case of children receiving palliative care, mediation should be readily available in all situations where parents and clinicians fail to find a meeting of minds and the court should be able to prevent the proposed action when it is not in the best interests of the child.
I am sure that the Bill, when amended in Committee, will offer a way forward that is practical and workable and offers dignity in dying to the individual and their family. The Prime Minister has announced that £25 million will be provided to hospice and palliative care services. That must be commended but, as the noble Lord, Lord Hunt, said, a one-off is fine and dandy, but it needs to be sustained. We need to make sure that facilities remain open and that the quality of end-of-life care is improved. We eagerly await the Minister’s response. I hope that we are not disappointed.
Baroness Meacher (CB)
My Lords, it is always a great pleasure to follow the noble Baroness, Lady Jolly, who made an excellent speech. I rise to support the first aim of this Bill, which is to ensure the provision of adequate funding for palliative care services, including hospices, across the country. Who could disagree with that? Hospice UK tells us that the NHS currently provides only 32% of the cost of adult hospice care and just 17% of the cost of children’s hospice provision. It is extraordinary that hospices still depend upon charitable funds to support such a high proportion of their vital services. Of course, hospices must have access to pharmaceutical services on the same basis as any other NHS-commissioned service. I hope the Minister can give the House some assurance that progress can be made on some of these injustices.
Adequate funding is certainly a necessary condition for the provision of high-quality services, but it is by no means a sufficient condition. The NHS Long Term Plan rightly talks about the need to give patients
“more control over their own health”.
Of particular relevance to today’s debate is the NHS commitment to personalise care in order to improve end-of-life care. Probably the most distressing feeling of anyone facing death is a sense of helplessness, a lack of control. We all know how much more suffering we can bear if we suddenly realise we have some control over it. I cannot be the only person who has had toothache and found that, the minute I booked an appointment with the dentist, the pain somehow did not seem quite so bad. That applies very strongly, and I suggest that the greater the pain and the greater the suffering, the more it applies.
Your Lordships will not be surprised—here I need to declare my interest, as stated in the register, as chair of Dignity in Dying—that I will argue from evidence of the experience in other countries that one of the most effective ways to increase the funding and quality of palliative care, most importantly the latter, is to give terminally ill, mentally competent patients the right to control the timing and circumstances of their own death if they are suffering unbearably: the right to decide for themselves when, despite high-quality palliative care, their suffering has reached the point where they cannot stand it any longer. It is no accident that nearly everyone—84% of people generally and 86% of disabled people—wants this right. We all fear an unbearable death—I certainly do—and would lead happier lives, as well as die better, without the need for that fear.
Surely relevant to the need for funding was the cash injection of 72 million Australian dollars in Victoria to increase the number of palliative care beds and access to home-based palliative care when assisted dying legislation was passed in 2017. In Western Australia, where assisted dying was legalised last year, the Government provided 17.8 million Australian dollars for palliative care. In California, where assisted dying has been legal since 2016, doctors say that the conversations that health workers are having with patients are leading to patients’ fears and needs around dying being addressed better than ever before. The whole point of the assisted dying process and safeguards is that the patients are at the centre. They are the decision-makers, they are consulted at every turn and the result is better palliative care.
Probably the most powerful evidence of the link between legalised assisted dying and enhanced palliative care provision comes from Oregon, where assisted dying was legalised 22 years ago. Oregon is considered to have the best palliative care services in the whole of the United States, and that is not an accident.
An important lesson from Oregon is that patients’ experience of palliative care depends not only on funding, as I have already indicated. Studies of Oregon’s palliative care services show that the Death with Dignity Act has resulted in more open conversations about death and dying, and more careful evaluation of end-of-life options. In the UK, the—in my experience, massive—taboo attached to dying is inhibiting doctors, and indeed relatives, from having those open conversations. The dying person therefore feels far more alone with their suffering than they should. The safeguards attached to the Oregon model of assisted dying, which we plan to introduce in the UK, with a few adjustments, ensure that patients facing death are encouraged to talk about their wishes, fears and treatment options. Nearest relatives are required to have a conversation with the patient’s doctor about their wishes for the patient. Doctors say that since the passage of the legislation, they have made the effort to learn more about the treatment options available. The quality of palliative care increases as a result, and that is what this debate is all about—better palliative care.
It is understandable that many palliative care doctors oppose assisted dying until the relevant law is passed. Then, as they experience their services improving and their patients being more involved in their care, the patient-centred doctors change their minds and support the freedom of dying patients to choose precisely how and when they die. We have evidence of this shift in the attitude of palliative care doctors from Oregon, Canada and elsewhere.
Along with other noble Lords, I want to see the best possible palliative care funding in the UK. However, until patients have some control over their own dying process, their experience of palliative care services will not be as good as it could be and, for a minority, dying will continue to be an utterly intolerable experience, however good the funding. That is what the report The Inescapable Truth illustrates in agonising detail. I could read it only in bits, as it was so painful to see what people had gone through before they died.
I turn briefly to Clause 2 of the Bill, which concerns the treatment of children with a life-limiting illness. In general, I am a great supporter of mediation as an excellent way of resolving disputes. However, I am profoundly concerned about this clause and, in particular, subsection (4). It assumes that parents will put the best interests of their child first, but it fails to take account of the very powerful need of any normal parent to keep their child alive. I argue that it is an animal instinct in us all and is essential for the preservation of the species. It is that strong—the feeling that “We just must keep that baby alive.” My heart goes out to any parent faced with the dilemma that Clause 2(4) seeks to address—misguidedly, I believe.
In my humble opinion, as the mother of four children, Clause 2(4) is very dangerous for anyone really committed to ensuring that the child’s best interests always remain paramount in these almost impossibly difficult situations. No assumption should interfere with the fundamental principle of the primacy of the child’s best interests.
Lord Brownlow of Shurlock Row (Con) (Maiden Speech)
My Lords, it is an honour and a pleasure to follow the noble Baroness as I rise, slightly nervous and daunted, to give my maiden speech.
As patron of and donor to the Prince of Wales Hospice in Pontefract and the new Thames Hospice build in Windsor, and as a donor to the Alexander Devine Children’s Hospice in Maidenhead, I strongly support the Bill and thank the noble Baroness, Lady Finlay, for bringing it to the Chamber. It is worth noting that, according to Marie Curie, end-of-life care is £280 per day per patient more expensive when delivered in a hospital compared to in a hospice.
I thank everyone in this House from all sides for their kindness, support and advice—as well as Black Rod and her staff, the Clerk of the Parliaments and his staff, our fantastic doorkeepers, the attendants and police officers. All have been incredibly helpful and given me so much guidance and direction. I cannot thank them and all other parliamentary staff enough. I also thank my supporters, my noble friends Lady Chisholm and Lord Callanan, as well as my noble friends Lord Cormack, Lord Leigh and Lady Rock, and the noble Lord, Lord Donoughue, who have all helped me further understand the workings of your Lordships’ House.
My journey to this place started modestly in Anfield in Liverpool, where I was born. Noble Lords will know that Liverpool has gained renown over decades for musical genius, football prowess, sharp wit and a generosity of spirit. I leave it to others to suggest which of these I bring to your Lordships’ House, but I admit to being an avid crime fiction reader and, curiously, a builder of complex Lego models, my latest project being the Taj Mahal.
By the time I was 14, my father’s job had taken us to Doncaster and then Southport. I read economics at Newcastle Polytechnic, where I was a contemporary of my noble friends Lord Callanan and Lord Bates in student and Conservative politics. After graduating, I became a police officer in Slough. I left the Thames Valley Police in 1988 and became a recruitment consultant, with time spent working around the Home Counties and in London.
In 1996, I started my own business. There were just two of us on day one. Today, that business employs thousands of people and works with clients all over the United Kingdom. We provide specialist resources focusing on governance, compliance and regulation. A few years ago, we passed the milestone of having paid over £1 billion in tax, proudly contributing to the British Exchequer as well as creating jobs and opportunity directly.
To date, I have started or invested in 16 companies, from pubs and restaurants through housebuilding and fashion to travel, technology, documentary filmmaking and education and, most recently, two green technology companies. Between them they operate throughout the UK as well as in Sydney, Shanghai, Singapore and Toronto. A thread that weaves its way through my portfolio is people. While I believe that an invisible hand works best in the market and the economy, I think there needs to be a more visible, gentle hand to protect vulnerable and less aware people.
While legislation and regulation exist to protect these and others, an essential problem is the failure of some organisations to comply. It cannot be right that an employee of the BBC has to go to an employment tribunal to have it ruled that she was denied equal pay on the basis of gender when a male colleague earned six times more than she did; nor that millions of bank customers can have financial products mis-sold to them. These are just two examples of the failure to comply with existing rules, but I believe there is scope to legislate and regulate further to protect people and resolve injustices without trampling on personal freedoms. That is why I look forward to the introduction of the online harms Bill and the much-needed domestic abuse Bill. But more needs to be done as part of our collective duty of care.
It cannot be right that a TV viewer can be enticed through advertising to take out loans that carry interest rates of over 1,000%. It cannot be right that a tenant justifiably granted a council house continues to stay there having married somebody earning £40,000 per year, and is still there today with an even bigger joint salary, as the original tenant is now also earning. It cannot be right that a person can become a fully trained nurse within the NHS only to leave, move abroad, become an agency nurse, commute to the same hospital and earn in two weeks what an equivalent employed nurse earns in a month, allowing the contractor to spend two weeks a month off duty and in the sun. It cannot be right that for the same train journey a passenger can more than halve the cost of a ticket by splitting the train journey into smaller chunks with multiple tickets, compared to one ticket bought for the whole journey.
I am very proud of my own charitable foundation, which works to help individuals or communities where there is an element of disadvantage, locally to me and across the country. It is through my foundation that I first started working with my Member of Parliament, Theresa May, as my foundation worked on projects throughout her constituency. Today that work continues, and she and I are also working together on a number of green initiatives as part of the UK’s trailblazing goal of achieving net zero emissions by 2050. So my final thanks are to our former Prime Minister, who nominated me to join your Lordships’ House. I know I have a lot to live up to.
However, my thanks are tinged with regret—regret that the challenges and circumstances of the last three years have meant that we have not fully benefited from the ideas and initiatives that she had in mind when she stood on the steps of Downing Street wishing for a fight against burning injustices. As she said, if you are born poor, you will die on average nine years earlier than others; if you are black, you are treated more harshly by the criminal justice system than if you are white; if you are a white working-class boy, you are less likely than anyone else in Britain to go to university; if you are at a state school, you are less likely to reach the top of your profession than if you are educated privately; if you are a woman, you will earn less than a man; if you suffer from mental health problems, there is not enough help to hand; and if you are young, you will find it harder than ever before to own your own home.
Much progress has been made over the past three years but these burning injustices remain. That is why, with an inherent sense of optimism, I hope that the Government, with their majority, will deliver on levelling up our society and create one nation that is fairer and more just. I thank noble Lords for the immense courtesy that they have shown me today.
Baroness Stroud (Con)
My Lords, it is a pleasure and a privilege to be able to congratulate the noble Lord, Lord Brownlow, on his excellent and deeply thoughtful maiden speech. The compassion and care with which he has approached this debate are testament to the wisdom and experience that he will bring to this Chamber. His professional success and entrepreneurial track record are matched, as we have heard, by his compassion and philanthropy. His personal charity has been an important driver in addressing disadvantage across the UK, including support for the Alexander Devine Children’s Hospice and the Prince of Wales Hospice, showing his deep, long-term commitment to the issues raised in today’s debate. It is a pleasure to be able to welcome someone with such experience to this Chamber, and I look forward to his continued contribution to this House.
I support this important Bill. As we have heard, Marie Curie estimates that one in four people in the UK does not get the care and support that they need at end of life. It is estimated that over the next year 118,000 people will die not having received adequate care. If their voices and those of their families could be heard in this place today, it would be declared a national crisis. So I thank the noble Baroness, Lady Finlay, for introducing the Bill and for her tireless work fighting for the dignity and respect of all who are dying.
The Bill does two things: it addresses the concerning gap in our healthcare system around end-of-life care; and it would ensure mediation in instances of conflict between parents and health professionals over the withdrawal or the giving of treatment. Following on from the NHS’s 10-year plan, published in January last year, the Bill addresses the failure to include palliative care as a core service of the NHS. This omission has created an unequal system whereby the standard of treatment at end of life is influenced far more by geographic postcode than a commitment to manage suffering and dignity in someone’s final days. The Bill addresses this issue by ensuring access to specialist palliative care in hospital, in the community and in places of usual residence.
Without the Bill, the crisis of care will become only more acute. Over the next 25 years, demographic changes will increase the need for end-of-life palliative care, as more people pass away each year with more complex needs. A recent analysis published in BMJ Supportive & Palliative Care found that clinical commissioning groups had significantly varying budgets for palliative care services, from approximately £51 to £2,300 per patient per annum. This is largely the result of a consistent failure to build a broad institutional approach to palliative care, as individual founders and local organisations have historically been the dominant forces in creating and funding hospices, for example. This issue is compounded by the fact that, as we have just heard, many hospices do not receive pharmaceuticals from the NHS, meaning that hospice budgets are consumed largely by the provision of essential medicines—a further inequality skilfully addressed by the Bill.
The Bill also addresses the issues raised by the tragic incidents involving the families of Charlie Gard and Alfie Evans. To lose a child is a tragedy that I believe every parent dreads, but I cannot imagine what it is like to lose a child under the glare of intense media scrutiny, with the public and professionals debating your intentions as a parent for your child. I offer those families my sincerest condolences.
For Chris Gard and Connie Yates, the pain and anguish they experienced with Charlie’s illness was exacerbated by the feeling that they simply were not being listened to. When they requested mediation and it was refused, and Charlie’s treatment was escalated to the courts, they not only felt powerless but were legally unable to access Charlie’s medical records to obtain a second opinion.
If mediation was the expected conflict-resolution pathway, the suffering of all families involved in these types of cases could be greatly eased. A recent Dutch study published in the official journal of the American Academy of Pediatrics found that, when there were conflicts regarding end-of-life decisions, by postponing these decisions until the 4% of conflicts within the administering team and 12% of conflicts between medical practitioners and parents were resolved, a consensus was ultimately met in all cases.
When our court system is so strained by parents who are failing their children, surely we want to support as much as possible those who seek to do everything right. Mediation is a crucial instrument in aligning the love and empathy of a parent and the practical medical reasoning of a practitioner. The goal of medicine is to heal and relieve suffering. As Eric Cassell warns in The Nature of Suffering and the Goals of Medicine,
“failure to understand the nature of suffering can result in medical intervention that (although technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.”
Our adversarial court system is not conducive to the relief of suffering. Charlie Gard received months of intensive care that health professionals felt was contrary to his interests, all the while without receiving the nucleoside treatment that his parents desired. This treatment, I might add, did not involve any invasive surgery but was a simple powder that was to be added to his milk formula. Nobody got the outcome they wanted, and it is evident that the suffering of Charlie and his family was greatly prolonged. The mental anguish in these situations is of a traumatic nature. For Charlie’s parents, not a day goes by when they do not wonder whether, if the circumstances around decision-making had been different, they could have done more for their son. This situation could have been avoided with a focus on mediation and by ensuring that consensus was reached before any decisions were made. The Bill will stop this happening again.
Over the course of this Parliament, more than 3 million people will die in the UK. Of these, around three-quarters will have an expected death. They have the right to know that they will get the care they need when they need it and, where there is conflict over that care between parents and physicians, that mediation will be available to them. I commend the noble Baroness, Lady Finlay, for introducing this Bill, which has the power to ensure that children and adults alike receive the dignified and respectful care they deserve.
Lord Berkeley of Knighton (CB)
My Lords, it is a pleasure to follow the noble Baroness, Lady Stroud, and I agree with a great deal of what she said. It is also a privilege to have heard, and be able to salute, the excellent maiden speech of the noble Lord, Lord Brownlow of Shurlock Row. The points he touched on suggest that he will be a valuable addition to your Lordships’ House.
I am delighted, too, to support my noble friend’s Bill for a variety of reasons. I hope that the Government will find our deliberations constructive, whichever way they feel they must go at the end of our debate, because there is considerable room for improvement in end-of-life and palliative care. My noble friend Lady Finlay is absolutely right about that. I hope she will forgive me but I must say that, curiously, I come to support her through our divergence of views over assisted dying. My noble friend eloquently opposed assisted dying because, as with so many of the medical profession, she felt it incompatible with her role as a doctor but also—perhaps more importantly, relative to our discussion today—because she feels that in this day and age no one should die in pain, given the palliative care that is potentially available. That is at the crux of her Bill.
There was, as I recall, a fairly widespread desire in the assisted dying debate to see better palliative care. I completely accept that assisted dying is a matter of principle that goes well beyond the scope of this Bill; nevertheless, there are several areas where the two debates intersect. They intersect because though no one should now die in agony, the fact is that they sometimes do. Even if that is seldom the case, which of course we all hope, what is beyond contention is that palliative care and hospice availability is something of a postcode lottery, as we have heard.
Before going any further I pay tribute to the many quite exceptional staff, up and down the country, who provide absolutely wonderful care and support, which amounts to love and compassion. I have been privileged to witness this and was deeply moved by the generous commitment of staff. We hear all too often about abuse and cruelty in the care of the elderly and vulnerable, and of course that is terrible, but not often enough about examples of best practice in our hospices or the dedication of doctors such as my noble friend. To find oneself at the end of life in one of these hospices with an enlightened consultant is great fortune indeed. But it should not be a question of good fortune or luck, or depend on where you live.
One thing that is certain in this world—even in your Lordships’ House—is that every one of us will die. Many of us will not need neurosurgery, cardiac treatment or a new hip but we will, as sure as night follows day, vacate our perch. We should face that unavoidable fact, not morbidly, but with imagination and creativity. We will not all die in our sleep, quietly and peacefully, however much we might wish for that—although palliative care can help. Surely the one thing we all want is the best possible medical assistance to lead us gently from one world to the next, even if the next is only the unquiet grave.
It is odd, as my noble friend has pointed out, that this area of medicine suffers in comparison with other healthcare services. It is good, as we have also heard already, that the Prime Minister announced in August last year that £25 million would be provided for hospices and palliative care services. Unfortunately, spread over these combined care facilities, that does not go terribly far, so I ask the Minister, as others have done, whether there will be a similar figure for 2020 and possibly for succeeding years.
I turn to the second part of the Bill. Clearly, the painful cases—and, oh, how painful they are—where medical advice goes against the wishes of the family of children receiving treatment that doctors might wish to withdraw or alter, and where a High Court application has to be made, are circumstances that we should seek to limit as much as possible. Whether mediation, a necessarily rather amorphous and pliable concept, could assist in reducing such applications I am not quite sure—fortunately, I shall be followed by a much greater legal mind than mine—but anything that helps the relationship between the parties has to be welcomed.
Both these subjects are sensitive, even taboo to some, but airing them with clarity and compassion can only help us to find better ways of living and, indeed, dying.
Baroness Butler-Sloss (CB)
My Lords, I declare an interest as a vice-president of Hospiscare Exeter, mid and east Devon, which works successfully to keep terminally ill people at home, usually to the last week—often, they die at home. We are appealing for money to make this a 24-hour service; currently, it is daily and we hope to do it overnight. The ideal situation for our hospice is where most people die at home.
The hospice work is wonderful. I strongly support the Bill put forward by the noble Baroness, Lady Finlay, except in one matter to which I shall come in a moment. This Bill has absolutely nothing to do with assisted suicide, despite the powerful speech of the noble Baroness, Lady Meacher, supported by the noble Lord, Lord Berkeley. I put it on record yet again that I do not agree with either of them, and I strongly support the way in which the noble Baroness, Lady Finlay, puts this matter forward. I belong to her cohort—I ought to say that because I do not think that the issue of assisted suicide is helpful in our discussions on this Bill.
I entirely support Clause 1 but I am concerned about Clause 2 and an issue that has not been raised, which I shall explain in a moment. Despite what the noble Lord, Lord Berkeley, has just said, mediation is an excellent idea. It works in family matters. These cases come before the family courts. I cannot see why we cannot try mediation. The Government might put a little money forward for a pilot scheme, as the noble Lord, Lord Hunt of Kings Heath, has recommended. I support what he said about that.
As a family judge and then President of the Family Division, I tried numerous, probably several hundred, cases in the years that I sat as a family judge. Those cases were sensitive and often tragic—in the two about which we have heard today, my heart goes out to the families concerned; I have to say to them that I lost a son aged 50 last year and, although he was adult, it was as painful as if he had been a child. For a son or daughter to be cut off as a baby or a young child must be absolutely appalling, and I really feel for them. But it is important when looking at this Bill to remember that the Children Act 1989 makes it the job of the judge trying a child case to regard the welfare and best interests of the child as paramount.
I recognise the trauma for families of going to the court and, I have to say, the great distress of many doctors who are faced with parents with whom they cannot agree. If it is necessary to go to the court, there is a problem for me with Clause 2(4), which says that “the court shall assume”—not the medical profession—
“unless the contrary is clearly established, that any medical treatment proposals put forward by any person holding parental responsibility for the child are in the child’s best interests.”
If I were sitting as a judge, I would feel that that constrained me from the utmost flexibility that I would need in deciding what, in my judgment, the best interests of the child were. That is what really worries me about this clause. I understand the motivation, but I wonder whether the noble Baroness, Lady Finlay, has really put her mind to how a judge would try such a case. “Clearly established” is a higher standard of proof than the first-past-the-post, more than 50%. It is not as high as a criminal requirement, but it would require a standard that would lead me, if I were sitting as a judge, to wonder whether I had the power to say that I did not really think that the parents had got it right.
It is very important to remember, as the noble Baroness, Lady Meacher, was telling us, that some parents are desperate to keep alive their seriously ill child with the most appalling birth injuries or distortions—we have some like that; the doctors here will know what I am talking about. I have had endless cases of children with absolutely no chance of living beyond two whom the parents wished to keep, and the older children were left at home with somebody while the parents sat at the beside until the child died. These are very sad cases but if they have absolutely no chance of survival, it may be that the doctors have got it right, and that is where the judge has to come in. That would not be the point at which I would want parents to put forward a medical treatment proposal. If it is an individual matter, one would hope it would be cleared by mediation, but I am very concerned about cases where the court has to make the decision.
One also has to bear in mind that it is not just about the parents. There are teenage children with extraordinarily serious medical problems who ought to be heard. They are not covered in Clause 2(4). We really must bear in mind that children—including young children—are people, not packages, as I said when I did the Cleveland child abuse inquiry. They really have to be consulted, particularly if the parents’ proposal would put them through a great deal of pain and discomfort, in order to reach a stage where a successful outcome may be less than 50% likely. I have had teenage children say, “I don’t want it; let me die in peace”, but the parents say, “No, no, you must keep the child alive”. This is a problem on which the judge must decide, and Clause 2(4) must not inhibit their exercising their discretion as to what is in the best interests of the child as they see it. That is what worries me about this clause.
I would be very interested in discussing the amendment of the noble Baroness, Lady Jolly, with her. I am not sure I agree with it, but I did not really have the chance to consider it properly. At the moment, I have to say, I would like to see Clause 2(4) deleted in its entirety. Maybe before Committee, we can consider something that does not impede the absolute discretion of the judge to make what he or she thinks is the right decision. With that one reservation, I strongly support the Bill and hope that it goes forward.
Lord Balfe (Con)
I begin by congratulating the noble Baroness, Lady Finlay, an assiduous campaigner who has left her mark on this, the great dividing subject of our age, and will continue to do so. I welcome my noble friend Lord Brownlow and his excellent speech. We heard the voice of responsible capitalism—of a capitalism that pays its taxes, looks after its workers and benefits its country. I am delighted that he has joined us on these Benches and look forward to many future contributions from him.
I shall speak mainly about mediation. When I retired from the European Parliament, I took a course and became a commercial mediator. There is a distinction: a commercial mediator mediates commerce, while a family mediator mediates various bits of family law. The most important thing I learned as a trained commercial mediator was that when we got an agreement, the two parties signed something called a Tomlin order, which had the force of law and could be enforced. My group of mediators saw that one of the weaknesses of family mediation was that it often gave rise to second thoughts within hours of the agreement being reached. Some of our family mediators found it very frustrating that they could spend a huge amount of time coming to an agreement which then did not sustain itself for very long.
In this excellent Bill, there needs to be a clear determination of what is being mediated. Is it the treatment, the future or a particular point of the treatment? If you do not have the question “What are you mediating?” to put before the mediator, it will not work. Once you have decided what is being mediated, the second question that has to be answered is “Who decides the mediator?”. In commercial mediation, it is normally the two parties who have to agree. In our corner of the world in East Anglia, the judge in the Peterborough court was very fond of sending things to mediation. He would say to the parties, “If you bring this to court, you will have two sets of barristers’ fees for a least two or three days. In the end, I will make a decision; one of you will be dissatisfied because I can make a decision only on what is before me. If you take part in mediation, you can adjust what is decided; you can make a decision between you. You can have a legal basis for that decision, but you have to decide on the mediator.” There were panels from which mediators could be chosen. I never quite worked out what my USP was, but I did not go too short of work. I think it was because of having been in European institutions. People said, “He knows beyond East Anglia.” I do not know, but the important thing is that you have a clear perspective on how the mediator is to be chosen. Coming out of that, a question that needs addressing—I do not propose to table amendments—is the extent to which an NHS panel of mediators will automatically be acceptable, or whether something wider is needed. That will be quite important.
I take the point about Clause 2(4), but it is always very difficult to decide whose interest is there. A mediator cannot determine something in anyone’s interest. The first thing you have to do is sit people down and listen, generally completely separately in the beginning. My first stage was always a listening session, and it could go on for a couple of hours. The important thing was the people poured out their heart and said what the basis was. You could not cut them off; if you tried to do so, it would not work, because they did not feel committed or that you were listening. They felt you wanted to get home for tea, or something. You had to listen, and only after you had listened to both sides might you bring them together.
You might talk to them separately, but one of my key points is that mediation has to be a flexible weapon. You cannot just say, “You have to go and mediate”, because I would find that in about 7% or 8% of cases, people would walk into the room determined not to settle, and they would not settle. I found that in about 15% of cases, they walked into the room thinking that they certainly were not going to settle, but once you had coaxed them along, they often would. There was another percentage beyond that where, if you had handled it wrongly, they would have walked out on you and you would not have got anywhere.
I make these points about mediation because I think they are incredibly important for us to take on board. I would be very surprised if the Minister were to jump up and say, “This is a marvellous Bill. Don’t bother with Committee—I accept the lot”, but within the department I ask her to look at local experiments, as I think of them, or local actions, to see whether the basic principles are roadworthy, to what extent they could work and to what extent we can get feedback. Part of the reason for doing things locally—for experimenting—is to find out whether they work.
I hope that the Minister will at least give the Bill a good welcome and commit, in some form or other, to find a way forward, with the noble Baroness, Lady Finlay, and everybody else, to move this along the road. I end where I started: this is the great debate of the next 30 years. It is about senior citizens, the end of life and how we deal with perhaps the biggest scandal we have today: the lonely elderly.
Lord Stirrup (CB)
My Lords, I support the Bill and I thank my noble friend Lady Finlay for her persistence in seeking improvements to this crucial but neglected area of care. My father spent his final days in a hospice, and while his death was, of course, a matter of great sadness, the care he received, mental as well as physical, helped not only him but his family to deal with an inevitable but always traumatic aspect of life. This last point is crucial. Death is an inevitable, inescapable part of everyone’s life, and we, as a society, should recognise that quality of death is an integral part of quality of life.
In considering human rights, we talk about the right to life. I have some difficulty with that notion, since we cannot guarantee life, but we can and should guarantee our citizens help with the experience that every one of them will have to undergo. This seems to me an important part of human rights. There is no doubt that in this country there are many areas of excellent practice in this regard, but it is also clear that much more needs to be done to level up our approach to palliative care. The Bill is an important step in that regard.
The Government’s response to previous attempts to introduce similar legislation seems to have been to say that primary legislation is not the best way to deal with the issue. Frankly, that would be a more persuasive argument had they taken the matter forward effectively through some other route. While there has been some progress, I am not persuaded that it has been sufficient.
This is just one aspect of a wider debate over the need to consider physical and mental care holistically rather than as a series of separate issues. Just as social care needs to be considered alongside and be consonant with the provision of health services, so end-of-life care should be a integral part of the way we provide for the physical and mental well-being of our citizens.
Yesterday the noble Lord, Lord Hunt of Kings Heath, initiated in this House a very good debate on the NHS and social care. In it, I said that we were asking too much from the NHS and that this was creating unsustainable pressure on the system. It might therefore seem rather perverse for me to support a Bill that asks it to do even more, but that is not my intent. I am quite clear that the NHS does not and never will have the resources to permit it to do everything it might, but choosing what not to do at random or excluding services because they were the last to be proposed is no way to run any public enterprise, let alone one of such importance.
The evidence shows that the approach of clinical commissioning groups to the provision of palliative care is very uneven across the country, driven, I assume, by budgetary pressures rather than by strategic decisions. This cannot be right, but it is no good simply blaming the CCGs for this. The lack of a proper strategy for the provision of healthcare in England is, as I suggested yesterday, at the root of the problem.
Nevertheless, something needs to be done in the short term to address some of the most serious deficiencies in palliative care. Given the excellent work done by hospices, and considering the burden they lift from the shoulders of our primary and secondary care systems, it seems nonsensical to deny them access to the pharmaceutical services available within the NHS and to patients being treated at home.
If difficulties in accessing palliative care for adults approaching the end of life are distressing and unwelcome, how much worse must they be for children and their families? Yes, we are all going to die, but we expect and hope that it will be the conclusion of a fulfilling life. The death of a child must bring with it an anguish that simply cannot be understood by those who have not gone through the trauma. I accept that parents undergoing such stresses will not always be the best judges of what is right for a child, but sometimes they will have insights crucial to the provision of the best treatment. Cases of dispute between families and medical practitioners will sadly always arise from time to time and resolving them satisfactorily will always be difficult.
I understand some of the concerns that have been raised with certain aspects of the present Bill, but these can surely be addressed in Committee and on Report. It seems indisputable to me that attempts to reach a conclusion to dispute through mediation must be preferable to immediate court action.
The Bill will perhaps require some amendment if it goes forward and it is no substitute for a proper, non-partisan debate on a strategy for the provision of holistic physical and mental care in England. But unless and until we have such a national debate, the Bill of the noble Baroness, Lady Finlay, is a good vehicle for addressing some important shortcomings in the present system and I support its Second Reading.
Lord Sheikh (Con)
My Lords, I begin by saying that I support this tremendously important Bill. I commend the noble Baroness, Lady Finlay, on her tireless dedication to the improvement of palliative care across the country and on introducing the Bill in your Lordships’ House. As someone who has supported the hospice movement for many years, I am glad that we are putting palliative care on the agenda and ensuring that it receives the recognition it rightly deserves.
Death is the only certainty we have in life. However, I believe that life is sacred. We have a duty not to give up on those who are suffering in any way. I therefore feel that we should not debate the ending of lives. This is why I have previously spoken in opposition to the Assisted Dying Bill in your Lordships’ House and in other places. The right to die can easily become a duty to die, but no life is less worth living than another.
Dying is an important stage of life, and, unfortunately, almost everyone will experience the passing away of someone close to them. It is regrettable that dying is made difficult for some people, their families and their carers. I therefore believe that our time should be spent discussing how we can better take care of adults and children or the vulnerable in their final part of life.
I am pleased that the Bill rightly places a duty on clinical services commissioners to ensure that palliative care is accessible to all patients of all ages, all over the country. In the next 10 years, over 5.5 million people in England will die, and around 75% of them will need some form of palliative care. For three-quarters of people, death is not sudden but expected. In the National Survey of Bereaved People, published in 2016, patients’ families recorded that 81% of patients expressed a wish to die at home or in a hospice. Despite this, nearly half of all deaths occur in hospital, while only 23.5% in England take place in the home.
It is important that we focus on recognising people who would benefit from receiving care in the community and move them away from hospital settings. If the increased palliative care needs are not met, acute and A&E services will take the burden. Indeed, around 30% of emergency admissions are for people in their last year of life, which amounts to 11 million bed days, costing the NHS over £2.5 billion. That is projected to double by 2041, and an additional 8,000 hospital beds will be needed. Therefore, we must actively pursue sufficient access to 24-hour general and specialist palliative care services in homes and care homes that provide the same standard of care as hospitals. We should all recognise that we have a duty to provide palliative care in the same way that we do for maternal health, because we are born and therefore we will at some stage die.
Community end-of-life care allows for a holistic approach that emphasises collaboration between the various health providers. Our hospices and the voluntary sector do not have the resources and capacity to provide palliative care for people of all ages who need it. Some hospice services are running on as little as 10% NHS funding, with the rest being raised by charitable means. In some cases, the funding received by voluntary organisations has not risen in 20 years. I note that the Government have pledged £25 million to protect hospices and palliative care services which support around 200,000 people. This cash boost will be distributed by clinical commissioning groups. I would like to see that sum being paid annually—I reinforce the point made by my noble friend Lord Ribeiro and the noble Lord, Lord Hunt.
We need to ensure that the postcode lottery of access to palliative care services must end. Figures from Marie Curie suggest that each year around 150,000 people in the UK do not receive the care and support they need at the end of their life. Furthermore, its fast-track continuing healthcare analysis found that only 22% of clinical commissioning groups were delivering palliative care packages that fell within the guidance timeframe of two days. We must have parity in accessible palliative care across the country and ensure that hospices are treated on the same basis as any service commissioned by clinical commissioning groups.
I am glad that the Bill would entitle hospices providing palliative care services to access pharmaceutical services on the same basis as other services commissioned by clinical commissioning groups. It has been brought to my attention that people are less likely to receive palliative care if they are over 65, have a non-cancer diagnosis, are from a BAME background or are single. I am therefore pleased to note that the Bill provides for general and specialist palliative care services that are consistent with the duty to reduce inequalities. I am also pleased that it contains a requirement for clinical service commissioners to produce end-of-life statistics that include the provision of specialist palliative care and hospice plans to meet the needs of patients.
I find it shocking that Hospice UK identified that in May 2016, 25% of clinical commissioning groups did not have a strategy to address end-of-life care. While preparing for this speech in support of the Bill, I communicated with various hospices, as well as the Rainbow Trust Children’s Charity, which provides emotional and practical support to families where a child has a life-threatening or terminal illness. I have been made aware that the number of children and young people requiring palliative care is rising. This is due in part to advances in medical science which mean that more seriously ill babies are surviving birth and children are living longer with complex conditions. Children’s conditions are also more unpredictable than those of adults.
Another challenge in palliative care for young people relates to the giving up or withdrawal of medical treatment. I am satisfied that the Bill emphasises mediation, with an independent mediator to reduce and resolve any differences that may arise when a child is ill. Mediation is a transparent and holistic process. I worked as a mediator in disputes relating to contracts, so I am a great believer in the mediation process. I stress that a child suffering from a life-limiting illness has an impact on the entire family—parents and siblings. Court cases in this environment can be traumatic for everyone involved and can often be a lengthy process. I emphasise that children are best when they are alive. Furthermore, court cases can lead to high costs for the NHS if a case is not resolved in time.
I feel that this Bill solves many problems, especially concerning the approval of treatment for children. It is significant that it has provision for an independent mediator, as I feel it is important to have an aspect of impartiality in mediation so that a solution can be found.
I end my contribution today by recognising the contribution of Dame Cicely Saunders to palliative care. She was a pioneer of the modern hospice movement, which takes a holistic approach to palliative care, managing physical symptoms and tailoring care to meet the social, emotional and spiritual needs at the end of a person’s life. I met Dame Cicely Saunders and had conversations with her regarding the important role that hospices play in palliative care. In fact, I have a connection with St Christopher’s Hospice, which she founded. She emphasised to me that there is so much more to be done to improve palliative care. I agree with her and I certainly do all I can to support hospice movements in this country.
Palliative care focuses on maximising quality of life, and to me it seems inhumane that specialist and generalist palliative care is not accessible for everyone. So I am grateful to the noble Baroness, Lady Finlay, for providing us with an opportunity to remedy this inequality. I hope that this discussion can be continued by this Bill’s progression, so that palliative care receives the recognition and support it so greatly deserves.
Baroness Hollins (CB)
My Lords, I congratulate my noble friend on her much-needed Bill. I have been so impressed by the many thoughtful contributions today, including the compassionate maiden speech by the noble Lord, Lord Brownlow. It is a pleasure to follow the noble Lord, Lord Sheikh. Recollections of Dame Cicely Saunders remind me that she taught me when I was a medical student.
Before my retirement as an academic psychiatrist in learning disability, my own research and clinical practice included a focus on end-of-life issues, including decision-making for people with learning disabilities and autistic people. Research at Kingston University and St George’s led by Professor Tuffrey-Wijne, the first professor of palliative care and intellectual disabilities, has shown that—just as in life—people with learning disabilities are discriminated against in death. In countries where physician-assisted suicide has been legalised, there is growing evidence that despite the rhetoric of choice, this is just one more situation in which there is a lack of respect and understanding and the wishes, rights and decision-making capacity of people with some developmental disabilities are ignored. I declare an interest as a co-author of peer-reviewed publications on this issue.
Most people with learning disabilities still do not get equitable end-of-life care, despite a decade of inquiries and recommendations. Personalising end-of-life care for everyone is in the NHS long-term plan. The multisystem, multidisciplinary approach needed to get end-of-life care right for people with learning disabilities would almost certainly get it right for everyone else too and should be a benchmark for all services. I hope that my noble friend’s Bill will ensure equal access for everybody, including people who are made vulnerable by the ignorance of clinical staff about the reasonable adjustments they can put in place to ensure that this group too can die a peaceful death—a point that I shall spend more time exploring in my QSD on Monday about mandatory training for all health and social care staff on treating people with learning disabilities and autistic people.
I am so pleased that the needs of children such as Charlie Gard and their parents are being considered in the Bill. I have met Charlie’s parents several times and applaud their courage in drawing to public attention what happened to Charlie and themselves. To have a dying child and be in conflict with your child’s doctors is the worst kind of nightmare—a nightmare that can have long-term emotional consequences for those left behind. No parent should be put through that, especially not in the public glare of the media. Mediation is the least that can be offered. I commend that initiative most strongly and look forward to participating in further debate about how that can work most effectively.
I do not recognise the research quoted by my noble friend Lady Meacher, who is not in her place—I can assume only that we read different journals; nor can I accept that assisted suicide has any place in this Bill. But I thank my noble friend for admitting that she is afraid of an unbearable death. She is not alone, but it should make her a passionate advocate for better services rather than looking for a quick way out. The truth is that some people may feel fearful and helpless at the end of life; indeed, depression and anxiety are quite common. The excellent book With the End in Mind: Dying, Death and Wisdom in an Age of Denial by the former palliative care physician, Dr Kathryn Mannix, illustrates that beautifully. The fact is that mental health conditions are treatable and both psychological and spiritual healing are possible, even and perhaps especially when someone is dying. Parity for mental health applies at the end of life too. The well-known author and surgeon, Atul Gawande, says that a life worth living would be possible right to the very end if only we knew how to talk about what really matters and how to make it happen.
In a public lecture that I hosted at the National Gallery in 2018, Dr Mannix chose six works of art depicting death and dying for us to discuss. But she started by asking the audience how many had been present when a person died. About a third raised their hands. Then she asked how many had been present when five people died and I raised my hand. Then she asked how many had been present at 1,000 deaths and hers was the only hand raised. I am sure that my noble friend Lady Finlay is the only one here today who could say the same. We know that fear and unfamiliarity colour perception. Her experience is that many people are afraid of death.
As childbirth approaches, some women are afraid too, but easy access to midwifery and obstetric services reassures most, giving them the confidence that they can manage and that their pain will be well managed. Many women will choose to give birth at home with community midwifery provided by the NHS. Some women will need specialist obstetric help in hospital and some will need help from mental health-trained midwives and liaison psychiatry teams; for example, because of maternal anxiety related to their own past trauma such as a previous stillbirth, unresolved relationship problems and other worries. Childbirth classes are offered to both parents. The importance of family support is well recognised.
Much the same could be said for dying. It is going to happen so, as the noble Baroness, Lady Jolly, said, how will we prepare for it? How will we resolve our own complex unfinished business? Just as in the transition to motherhood, the transition from this life will need varying amounts of support. Some of us will be confident enough to want to die at home with the right support. Many people will die in a nursing home, and too many people will die in hospital. Some people will need specialist palliative care in a hospice and at home, and most people will need death education for themselves and their families. However, unlike at the beginning of life, we as a society do not seem to be shocked by the paucity of provision of end-of-life care. I suggest it is because we live in an age of denial and still fail to understand the nature of death. Last year, when responding on behalf of Her Majesty’s Government to a Second Reading debate, the noble Baroness, Lady Barran, argued that no other area of clinical care was mandated in primary legislation, but she was at a loss to disagree with me when I suggested that maternity care was surely mandated. Why cannot end-of-life care be accessed with the same degree of commitment as that provided at the very start?
On 23 July 2019, the noble Baroness, Lady Barran, wrote to my noble friend saying that I was correct. She said that,
“there are a small number of NHS services that are mandated in primary legislation, including midwifery services. These were set out in the NHS Act 1977, was updated by the NHS Act 2006 which replaced certain provisions, and most recently significantly revised by the health and social care act 2012.”
Can the Minister still defend the Government’s position that mandating care at the end of life is less important than mandating it at the beginning? I suggest it is time for a piece of mature, grown-up legislation. Is it not time that we accept our responsibly as a mature society? Will Her Majesty’s Government please support the Bill?
Lord Kerr of Kinlochard (CB)
My Lords, my fox has just been shot: I was going to make exactly the same point that the noble Baroness, Lady Hollins, made at the end of her speech. I, too, congratulate the noble Baroness, Lady Finlay, on her persistence. I, too, looked back to see what happened the last time we had this debate; it was in June. I, too, was struck by how the noble Baroness, Lady Barran, ended by saying that no other area of clinical care was mandated in primary legislation. I had not spotted that that was wrong. I had spotted that the argument she went on to make was rather bad. She said that to put such care in primary legislation would set a dangerous precedent. I recognised that move very well because I used to work in Whitehall and I know that when one could think of no good argument to defend one’s department’s position, one would resort to “dangerous precedent”, “unripe time” and, if one was in the Treasury, which I was for a time, “outwith the ambit of the Vote”. Actually, that is the best one because nobody understands what it is and nobody can challenge you on it.
How would it set a dangerous precedent if this Bill were to pass into law and lay this duty on commissioners in primary legislation? I do not understand what Trojan horses will gallop out if one opens that Pandora’s box. It seems to me that it is in no way dangerous. It would correct an anomaly. It is clearly the case, and clearly scandalous, that palliative care is so unevenly distributed across the country and that the level of investment in it is wildly uneven. That should be put right. It seems to me that it would not be a dangerous precedent and that the time is ripe. After all, this House has twice passed previous versions of the Bill.
I congratulate the noble Baroness, Lady Finlay, on this time getting the Bill on to our agenda so early in the Session. It seems to me that this time, we are going to get it on to the statute book. I very much hope that the Government will assist.
Baroness Brinton (LD)
My Lords, I thank the noble Baroness, Lady Finlay, for bringing this Bill back with some amendments, which have undoubtedly strengthened the one that we debated in this House in June last year.
For far too long, patients across England have been victims of a system of palliative care that lacks not only consistency but the resources to help them. I join noble Lords in being delighted that the Government have announced that they will provide £25 million for hospice and palliative care services, but I am concerned that the Library briefing tells us that the purpose of this investment is to
“help keep facilities open and ‘improve’ the quality of end-of-life care”,
as that is well below the target of this Bill. The Bill seeks to absolutely mainstream palliative care throughout the country. Given the debate and the comments from expert colleagues in the House today, I am sure that if that happens, money will be saved in the acute hospital system as well. What is not to like?
Noble Lords have covered an enormous amount of ground. From the Liberal Democrat Benches I confirm that we consider virtually all the Bill to be important and correct, and it certainly needs to be found a space so that it becomes legislation. I urge the Government, and particularly the Minister, to move us forward from the statement on 29 October that the Government would work with patients, families, local authorities and voluntary sector partners to ensure equity of access to general and specialist palliative care throughout England. My grandmother often used to say, “Fine words butter no parsnips”, and the problem with that statement is that you cannot ensure that equity of access unless the resources are there to support it. Therefore, I apologise to the Minister because, once again, I am going to say that we must have the resources to enable the Government to deliver on their extremely strong words. Let us make sure that Clause 1 is enacted as fast as possible.
Your Lordships will know that I have a particular interest in palliative care services for babies, children and young people. The briefing from Together for Short Lives has a brilliant opening statement:
“If passed by parliament, this bill would help to overcome many of the barriers children and families face. This bill could also help to make sure that parents of seriously ill children and the professionals and services caring for them resolve conflicts about what is in a child’s best interests by mediation and not in court”.
Hear, hear—we on these Benches echo that, as does the British Medical Association.
The Liberal Democrats have long sought to fund palliative care and the hospice movement through NHS funding, so we are pleased to support Clause 1 in its entirety. I thank the noble Baroness, Lady Finlay, for putting back on the face of the Bill the stronger form of the legal duty for the relevant bodies—“appropriate health services”—to provide and commission palliative care and psychological supports for patients and their families. That is extremely welcome.
There is still no method of accountability to ensure that CCGs and other health bodies serve patients to the best of their ability. The situation is begging for a catalyst that will empower CCGs and hold them to account in the work that they do. Your Lordships know that I have spoken often about the position of parents with young children in Hertfordshire who need palliative care. We saw a CCG close the respite care centre 100 yards down the road from my house without making arrangements elsewhere for these children. Eighteen months after the provision closed, the alternative beds have only just opened 20 miles away in Hertfordshire, but these beds do not in any way replace the ones that were closed. The standard of variation between the lowest and highest budgets allocated for some patients by CCGs is extraordinary. No patient deserves to receive care so lacking that it is not palliative care at all.
Focusing again on children and young people, the provision in the Bill regarding pharmacies is important. However, we remember that NICE has stated that children with life-limiting conditions should be cared for by multidisciplinary teams. Together for Short Lives has found through its surveys that across England this is sometimes, rarely or never the case. It talks about a number of other facilities but there is not time this afternoon to go through them all.
However, I want to point out one absolutely chronic problem for the children who require these services that has worsened considerably over the last six months. There is a major discrepancy between the services planned and funded between 8 am and 6.30 pm from Monday to Friday, and services commissioned to provide care outside those hours. Some 93% of clinical commissioning groups commission community children’s nursing teams but only 67% provide out-of-hours care. This has resulted in parents frequently having to call an ambulance to take their child to A&E—the last place these children need to be—to have their feeding tube reinserted. This is so short-sighted; it needs to be remedied.
Nikki Lancaster, mother to Lennon, who died nearly two years ago, said:
“Nine to five, my community nurses were amazing, but come five o’clock in the evening, you’re very alone. It’s a massively overwhelming responsibility keeping a child alive. When you’re out there on your own and you’ve got no support it’s hard—emotionally hard. If you were in hospital, it would be a consultant making those decisions. When you are at home, it’s you.”
Following the death of her son Lennon, Nikki Lancaster faced the other problem that bereaved parents in receipt of benefits face: she got absolutely no benefits from the day he died because they were all linked to his care. During the passage of the parental bereavement Bill, I specifically asked the Minister to talk to DWP to make sure there was comparable provision for parents who had had to give up work to look after their chronically or terminally ill children. That has not happened. So, while we celebrate the parental bereavement Act, there is unfortunately a cohort of parents who are still being left high and dry.
Like other noble Lords, I had a problem with Clause 2(4). I am grateful to the noble Lord, Lord Balfe, for his comments about mediation, which were excellent. Before I came into the Chamber today, I was thinking, “An ACAS for the NHS and patients”; the noble Lord absolutely got that point. The noble Baroness, Lady Butler-Sloss, has taken most of the wind out of my sails but, as somebody who has been a UNICEF trustee, I point out that Article 3 of the UN Convention on the Rights of the Child says:
“In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.”
The problem with Clause 2(4) is that, no matter how loving the parents are, their views should not come before the interests of the children. That is why I very much welcome the family courts using children’s guardians to make sure that the voice of the child is heard, particularly in the case of very small children, who have no voice of their own.
Another, related issue, concerning teenagers, was briefly touched on. I am reminded of the importance of the Gillick competence. What do we do about teenagers, or perhaps even younger children, who could consent to and fully understand the medical treatment proposed? Which would come first—the Gillick competence or the relevant clause in the Bill? I am delighted that my noble friend Lady Jolly has proposed an amendment for Committee stage. I am not quite sure that I support it in its entirety; I do not believe that it passes my two tests of the UN Convention on the Rights of the Child and the Gillick competence. But I hope that the noble Baroness, Lady Finlay, will be open to discussing how we might best improve the Bill to ensure support and satisfaction for parents who are clearly suffering at an extraordinarily difficult time, and support for the rights of the child, which must always remain paramount.
I hope that this Bill will have further space in the Government’s schedule and, even if it does not, that it is sufficiently high up in the system. Please can the House authorities make sure that it is scheduled swiftly for Committee and subsequent stages? I hope the Minister can reassure us that there will be more than £25 million available for palliative care, and that the Government will take to heart the detail of this Bill in seeking to mainstream palliative care and ensure that it is available for absolutely everybody in this country who needs it.
Baroness Thornton (Lab)
My Lords, I congratulate the noble Baroness, Lady Finlay, on getting her Bill here and being persistent, which counts for a great deal in this House. I welcome all the contributions today, particularly that of the noble Lord, Lord Brownlow. I echo other noble Lords in saying I am certain that he will make a great and valuable contribution to your Lordships’ House. I also thank organisations for their briefings. Like many speakers today, I have had experience of dealing with and accessing palliative care for loved ones, in my case at least twice in the last 10 years.
It is important to focus, as this Bill does, on addressing shortcomings in end-of-life care provision by ensuring that all NHS commissioners make arrangements for general and specialist palliative care services to be available to all those who need them. At this point I probably need to draw the House’s attention to my entry in the register of interests as a member of a clinical commissioning group. We all know that there are examples of excellent end-of-life care being provided throughout the UK, but as other noble Lords have said, particularly my noble friend Lord Hunt, there is considerable and unacceptable variation between locations relating to whether people are being cared for in hospital or in the community and their medical condition. The Bill would help in addressing those variations and ensure that high-quality generalist and specialist palliative care is available to all who needed it, as it should be.
We on these Benches welcome the Bill’s ambition to place hospice provision on an equitable footing with all other healthcare services provided in a local area. We are pleased to see the Bill specifically mention hospice access to pharmaceutical services. Pain and other uncontrolled symptoms are frequently cited as the main concern about death and dying. We support the Bill’s provisions that would ensure that clinicians providing general palliative care had access to specialist palliative care advice at all times.
I am grateful for the briefing that I received from Together for Short Lives. I commend it for its wonderful and hard work in this area. I draw particular attention to the fact that it says the growing shortage of skilled children’s palliative care doctors and nurses across England has now reached crisis point so that even the good services are in jeopardy, which is leading to seriously ill children and their families missing out on crucial out-of-hours care and vital short respite breaks. It says that there are too few skilled children’s nurses to fill vacant posts in children’s hospices, with more than half of children’s hospices citing an overall lack of children’s nurses as a significant factor in the vacancy rates they are experiencing. I feel bound to ask the Minister why this clearly-needed service that should be available across the country is not being driven by the NHS and the plans outlined in the long-term plan—or is it going to be? Is it possible to take urgent action to address both adult and children’s palliative care workforce issues in the NHS people plan?
It is of course Clause 2 that raises the most concern for us, as it did for many noble Lords. I was very struck by the briefings that I received from both the BMA and Together for Short Lives expressing their concerns. I will say that everyone will welcome the Bill’s important ambition to support the resolution of differences of opinion through mediation as a non-adversarial approach, although I think the remarks by the noble Lord, Lord Balfe, were pertinent. We would welcome an accompanying commitment from the Government to properly resource mediation and ensure that it is readily accessible across the NHS, because no one wants to end up in court.
The concerns centre on the proposal in Clause 2(4) to change the way that courts consider cases when there are differences of opinion as to what treatment is in a child’s best interests. I absolutely understand how painful and difficult these issues are. The BMA says about Clause 2(4):
“We believe the current approach is preferable and does not need changing. The current approach ensures the court’s starting point and focus is on a child or young person’s best interests, taking into account all relevant factors, including the views of parents.”
Following the remarks of the noble Baroness, Lady Brinton, I think that simply has to be right.
If the current approach is to be changed, we will need to take account of a number of issues. The courts would surely have to consider the views of all those who have a parental responsibility for a child. What happens when people who hold parental responsibilities disagree on what is in the child’s best interests? How would the situation of foster carers holding parental responsibility alongside birth parents be dealt with? That may be fraught. I can see that there might be increased conflict if one person’s parental responsibility is deemed to hold more weight than others. The way the Bill is drafted could lead to one parent’s views being discounted in favour of those of another. The noble Baroness, Lady Brinton, also mentioned the Gillick competence of a 16 or 17 year-old, who may very well wish to cease medical treatment when their parents want to continue it.
Finally, what weighed heavily with me is what Together for Short Lives had to say about this:
“We have concerns that the level of proof required by this Bill to ‘clearly establish’ that ‘any medical treatment proposals put forward by any person holding parental responsibility for the child’ are not actually in a child or young person’s best interests would be too high. Parents’ views and wishes about the treatment of their children are extremely important and, where possible, should always be sought and discussed.
Where disagreements cannot be resolved and the court is approached for a view, courts frequently support parental decisions that are within the range of what could be considered in the best interests of a child. Where disagreements reach the courts, parents need to be able to access support to ensure their views and wishes are adequately represented. Whilst it is entirely understandable for parents to want to prolong their child’s life for as long as possible, we believe the court has a responsibility to ensure that children with life-limiting illnesses are not exposed to unacceptable, painful, unproven, or suboptimal treatments.
We believe that there is a greater risk of children and young people being exposed to these kinds of treatments if this new approach is adopted.”
That is very serious and has to be weighed in the balance when considering this clause.
We on these Benches offer our support to this Bill. We hope that the problems in Clause 2(4) can be resolved and look forward to the Minister’s remarks.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Blackwood of North Oxford) (Con)
My Lords, I thank all noble Lords who have taken part in what has been an important and moving debate. I particularly thank the noble Baroness, Lady Finlay. Her passion and commitment to improve the quality and experience of end-of-life care for everyone in this country are well known, both in this place and outside these walls, where her experience is known for not just the passion that she expresses but the way she has touched individuals’ lives. I also congratulate and pay tribute to my noble friend Lord Brownlow on what was an outstanding and moving maiden speech. It is quite clear that he has a great deal to contribute to this place and I look forward to his contributions in many debates to come.
Obviously, the provision of high-quality end-of-life care is an issue that each of us will care very personally about, and I therefore understand the intention of the Bill. It is the third time I have spoken on this matter in as many parliamentary Sessions. In responding, I shall address the provisions of Clause 1, and then Clause 2, which addresses a separate and equally important matter.
In common with previous Bills tabled by the noble Baroness, Lady Finlay—I would like to call her my noble friend—Clause 1 of this Bill seeks to introduce a range of measures relating to the provision of palliative and end-of-life care services, which have already been rightly tested in debate. These would create new primary legislation and amend existing legislation in Section 3(1)(c) of the National Health Service Act 2006, to create new duties on CCGs to provide some specific measures listed in the Bill.
Although I take the points raised by the noble Lord, at the moment, no other clinical area is provided for in such a detailed, prescriptive way as this Bill would create, although there are measures which were noted by the noble Baroness, Lady Hollins. As the noble Baroness, Lady Finlay, will know from responses to her previous Bills, legislating in this kind of detail on what a local commissioner must provide with regard to a clinical area is contrary to the principle of the autonomy of a clinical commissioning body, which was established in the Health and Social Care Act 2012, to determine what services it will commission based on the assessed needs of its local population. CCGs are already subject to the duty to commission health services based on local needs and palliative care is covered by this general stipulation. In addition, there is existing national commissioning and clinical guidance on the delivery of high-quality end-of-life care, which I know many in this House will be very familiar with.
Concerns have also been raised that legislating that care should be provided in a range of locations for patients—essentially, legislating for choice in end-of-life care—risks creating some tension between patients, clinicians and families, where patients cannot receive specialist palliative care in their home or care home because of their level of clinical need or the suitability of the accommodation. That may be debated further.
The Bill contains a separate provision which would mean that hospices can access drugs that would be available on the NHS on a no-cost basis, and that commissioners should pay for this. Currently, a CCG pays for a hospice resident’s medicines only, first, where it has commissioned the hospice care or, secondly, where they are prescribed by a GP and the cost has been allocated to that CCG under Schedule 12A to the NHS Act 2006. This would represent an expansion of CCGs’ liability—
Lord Kerr of Kinlochard
The duty as defined in Clause 1(1) would require clinical services commissioners to arrange for the provision of palliative services,
“to such extent as it considers necessary and appropriate”.
That is not a particularly specific duty in relation to anything else in the Bill. I do not quite follow the argument that if something as specific as the Bill was put into primary legislation, it would create a dangerous precedent—an anomaly, or whatever. The duty is widely expressed here and not particularly specific: they must consider it necessary and appropriate.
Baroness Blackwood of North Oxford
It has been seen that this duty would contradict the other legislation, as it stands, where it allows for autonomy for the CCGs. We have already expressed that we are happy to discuss this further with the noble Baroness, Lady Finlay, to explain it. On the question regarding prescription medications, I was going on to explain—
Baroness Butler-Sloss
I am sorry to interrupt the Minister but, following on from an earlier question, would it be possible to have a more wide-ranging discussion and invite other people to attend, so that the NHS team, plus the Minister and the Department for Health and Social Care, could meet them to discuss this? Currently, I think the Government have got it wrong.
Baroness Blackwood of North Oxford
Given that this discussion would be with the lead Minister for Social Care and the lawyers, I am very happy to make that commitment on their behalf. I am sure that we could drill down into the legal detail of exactly where the conflict occurs to understand that issue. Perhaps I might go on to explain some of the reasons why we think that some of the provisions have been overtaken in trying to improve palliative care, subsequent to the previous presentation of the Bill. That may be reassuring as well and might help in the debate. Would that be helpful? I will also explain the concerns on the requirement around prescriptions; that was my intent in progressing.
The issue around this representing an expansion of CCGs’ liability for the cost of medicines is that it would encompass the medicines needs of all privately funded hospice residents as well. As it is written, there is a concern. It arguably gives special treatment to one group of privately funded health service users over everybody else with some form of privately funded healthcare. This would require CCGs to fund the cost of drugs, which also risks CCGs choosing to stop funding beds through contracts. If that were to be an unintended consequence, it needs to be considered carefully. I am sure that there will be further debate on this.
This Government are committed to ensuring that we improve end-of-life care and recognise many of the issues that have been raised. They published an end of life care choice commitment in 2016, which I know has been debated previously, in response to an independent review of choice, and it sets out what everyone should expect from their care and the actions taken to reduce variation, which has also been raised here. It also sought to make more personalised care a reality. Since its publication, NHS England, health system partners and stakeholders have worked through the national End of Life Care Programme Board to provide more data, more tools and more evidence, support and guidance to local areas to highlight unwarranted variation, to improve policy development and to provide better commissioning. The end-of-life care atlas of variation, published by Public Health England, highlights variation across a broad range of measures and indicators such as place of death, admissions, the proportion of patients and identification recorded on a GP register. This allows CCGs to be benchmarked across services against one another and to draw on advice, best practice and guidance to improve service quality. This is a significant improvement and promises to be helpful.
This has led to new investment to support the NHS long-term plan, with new actions to help drive further improvement in end-of-life care and support choice. They include accelerating the rollout of personal health budgets, with up to 200,000 people, including those with palliative care needs, benefiting by 2023-24 and rolling out of training to help staff identify, and provide care for, those in their last year of life. I know that the noble Baroness, Lady Thornton, wanted some numbers on that. The latest available show that more than 600 doctors are qualified in palliative medicine—this is almost 200 more since 2010; there are 1,300 nurses and health visitors working in palliative medicine, which is over 300 more since 2010, and the people plan will have a holistic approach to how we can attract clinicians of all the different levels into the harder-to-recruit areas. We have discussed that a number of times over the Dispatch Box, so I shall not go into more detail now.
A number of Peers asked about funding. We are making £4.5 billion of new investment to fund expanded community multidisciplinary teams, providing targeted support to those identified as having the greatest risks and needs. That is important because the majority of palliative care is provided in the community, as the noble Baroness will know, and it is important that we make sure that GP and community care is properly funded. On the £25 million announced by the Prime Minister in August, this was provided to CCGs in October 2019. It has already been allocated to hospices. The 2019 manifesto set out a commitment to build and provide further support for this, which I hope reassures your Lordships. The reason that the money was provided for hospices and palliative care services was that, as was rightly said, hospices do not exist in all areas, so the intention is to make sure that we can drive down variation and improve services across the system.
In addition, we are upgrading NHS support to all care home residents with the enhanced health in care homes model rolled out across the whole country over the coming decade. We are also making end-of-life care one of the new quality improvement areas for the revised GP quality and outcomes framework to support early identification and personalised care planning. I know that the noble Lord, Lord Sheikh, asked me specifically about those who wish to die at home. We know that most patients express a preference to die at home. Currently, around 47% of patients die in hospital. This has improved since 2007, when the figure was 56%, but it is important to note that there are occasions when admission to hospital may not be preventable because, as a situation progresses, some patients may want to be in hospital as death approaches because they feel safer at that point. In other cases, the family or care giver may not be able to cope at that point, but we are working hard to improve choice.
I turn to Clause 2, relating to the treatment of children, and the issues raised by the noble Baroness, Lady Finlay, my noble friend Lord Ribeiro, the noble Lord, Lord Hunt, my noble friend Lady Stroud and a number of others. The noble Baroness, Lady Finlay, has set out proposals calling for mediation in the tragic cases where there is a disagreement in the giving or withdrawing of any form of medical treatment for a child with a life-limiting illness. Decisions around withdrawal of treatment are never easy and it is difficult for any of us to imagine the pain and suffering that families in such situations go through. At the heart of each of these difficult cases, as the noble Baroness, Lady Brinton, said, is the well-being of the child. That must remain everybody’s focus. It is important that we do all we can to ensure that families and medical experts communicate and, where possible, reach agreement on the best interests of the child. My deepest sympathies are of course with any family facing such a difficult decision and trying to navigate the challenges of our healthcare system in such a distressing moment.
Mediation can and does play a vital role in facilitating better communications and creating a space where voices on both sides of a dispute can be heard in a non-adversarial way, which is of course what we all want to achieve. It is certainly important that the legal framework is considered as part of this. The evidence shows that, unfortunately, it does not provide a solution in every dispute, particularly those most serious cases where there is a breakdown in communication or trust between the clinicians in the hospital and the parents, which may lead to animosity and lengthy court battles. It is incumbent on us all to do what we can to prevent these difficult and sad cases reaching court in the first place, which is extremely distressing for all parties—we have seen those cases.
The Government are very supportive of the many excellent mediation schemes available, including those run by charities and the private sector, and we pay tribute to those who run them. We are not sure that legislation is the answer to making sure that they exist everywhere. They are thankfully rare cases, but none the less extremely tragic. We believe that the lack of statutory prescription so far means that mediation can be tailored specifically to meet the individual needs of families and their children, clinicians and hospitals, reflecting the unique circumstances of each case. We are working with NHS England and the Nuffield Council on Bioethics to look at the effectiveness of mediation and of clinical ethics committees in managing disagreements and at how this could be improved. At this time, there does not appear to be a strong call from experts in the field to make mediation or clinical ethics committees a mandatory requirement. My honourable friend the Minister of State for Care has agreed to attend the Nuffield Council on Bioethics round-table discussion on disagreements in the care of critically ill children. This will bring together high-level health policymakers aiming to agree a set of actions reflecting what NHS leaders should do and further support the creation of healthcare environments that foster good collaborative relationships between parents and healthcare staff.
We absolutely believe that healthcare professionals have a duty to act in the best interests of their patients. When doctors and families do not agree about the best interests of a child, as in the tragic cases we have seen in recent years, the courts can be asked to make an independent judgment on the best interests of the child. We are concerned about the issues raised and that legislating in the way set out in the Bill would create a presumption that, unless it is clearly established not to be the case, the views of the parents represent the child’s best interests. There may be instances where this is not necessarily the case. This would be a significant departure from the current situation, which requires the court to make no assumptions and to consider the child’s best interests with an open mind. Establishing a default presumption would override the court’s sole focus on the interests of the child.
In almost every case of dispute, families and clinicians are able to reach agreement. The rare occasions when cases end up in court are picked up and amplified by the media. They are heartbreaking, which is perhaps why they appear more common than they are. Legislating for those rare but difficult cases would not be appropriate at this time. Our efforts are best directed at ways to avoid them in the first instance. My honourable friend the Minister of State for Care would like to offer to meet the Gard family, or representatives of the Charlie Gard Foundation, to discuss how we can focus our efforts on this important area, if that would be welcomed.
To conclude, I would like to thank the noble Baroness for raising the important issues in the Bill and every noble Lord who has contributed to this significant debate. However, I must advise that the Government have expressed their reservations and will move to oppose.
Baroness Finlay of Llandaff
My Lords, I thank all noble Lords who stayed behind on a Friday to contribute and who have done so much research behind the speeches they gave in support of my Bill. I can confidently say that the first part of the Bill has full—from many, completely overwhelming—support. I am extremely grateful for that, as will be all those who are trying to provide excellence in end-of-life and palliative care. I single out the noble Lord, Lord Brownlow, for his amazingly warm maiden speech, in which he showed his understanding of vulnerability and of the fundamental principle of the duty of people in society to look after each other. All noble Lords gained a great deal from it.
I know that the hour is late and we all want to move on, but I will turn briefly to the concerns expressed over Clause 2(4). I am delighted that so many noble Lords want to discuss it. I am more than happy to do so, and to amend it. We have to get things right; this was my humble start. We have fantastic expertise. I reassure the noble Lord, Lord Hunt, that I am in conversation with Together for Short Lives. The noble Baroness, Lady Jolly, has been incredibly helpful to date and I am sure would join me when I say that we should expand the discussions to include the noble and learned Baroness, Lady Butler-Sloss, the noble Lord, Lord Hunt, the noble Baroness, Lady Brinton, and my noble friend Lady Hollins, all of whom have enormous experience. There is no conflict; the wording in the Bill is not right. However, we do need to rebalance the way that the voice of the parent who is genuinely concerned can be heard—probably in the pre-court time—and is then represented by barristers speaking on their behalf.
I take slight issue with the noble Baroness, Lady Meacher, over parents always wanting their child to stay alive. I have had in-depth conversations with parents who have said: “Enough is enough. Can we withdraw? Can we stop?”. I have been involved in extubating children and looking after them as they die peacefully and gently in their parents’ arms. I have helped parents lay out their child after death. It is such an anguishing time, but their overriding concern is to prevent the suffering of the child they love and to have their views and culture respected in the way that that is done.
I am grateful, too, to the noble Lord, Lord Berkeley of Knighton, for highlighting the need for open conversations. I declare an interest in Dying Matters; it is part of Hospice UK and I was part of the group that set it up. It has done an enormous amount to lift the lid off the taboo. People now talk openly about dying. If you go in to any out-patient department, people will sit and talk openly with clinicians about their death and dying. In the gap, the noble Lord, Lord Kerr of Kinlochard, rode into the debate like a shining knight to blow apart the reasons for not legislating for access to palliative care. I would welcome further advice from his vast experience on how we drive this forward. I am sure that that will be in conjunction with the noble Lord, Lord Ribeiro, who brought his experiences and salutary tales of how it used to be. He and I know how awful it was and how it does not need to be like that.
On mediation, the noble Lord, Lord Balfe, made a point about the great importance of listening. Nearly always, things go wrong when people have not listened early on—listened to what people say, listened to their expectations and tried to understand things from their point of view. How true that is. If only people spent 80% of their time listening instead of talking, we might have less misunderstanding.
The noble Lord, Lord Sheikh, brought his experiences of the hospice world and his wide support for it, and also his experience of mediation, to support this. I do think a pilot would be most welcome, as the noble Baroness, Lady Stroud, said in talking about the need for mediation. In fact, there is a Court of Protection pilot going on at the moment over mediation, run by a group of solicitors. There is something to be said for the complete independence of somebody coming in, rather than the clinical team that is already involved and can be perceived as having already taken some kind of stance. Certainly, any kind of pilot needs evaluating, so all those comments were very welcome.
Finally, the noble Baroness, Lady Brinton, highlighted that resources are not just money but also people, and the noble Baroness, Lady Thornton, pointed out that you need people to address the variations: money does not do it, you need trained people. She asked about the number of people in palliative medicine. I just sound a tiny note of warning because, as the shape of training changes, there will be fewer doctors for a time, unless we put the numbers up: they will be doing a lot more in acute medicine and supporting acute medical services, bringing their skills there—but we cannot think that, just because the numbers have gone up from the early days, we have got there yet.
I hope that I have adequately paid tribute to the fantastic contributions of everybody in the debate and I look forward to discussions with the Secretary of State and the Minister with responsibility for this area, because I feel we are at the point where sometimes it needs a jolt. I go back to the analogy with seat belts and tobacco control. Perhaps I have still got too much in the first part of my Bill; I am happy to take it down. But laws send messages, and the variation, as seen in the atlas, despite all the work that so many of us have done over decades, shows that it is now time for that jolt to happen. I beg to move.