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Access to Palliative Care and Treatment of Children Bill [HL] - Second Reading

Part of the debate – in the House of Lords at 1:45 pm on 7th February 2020.

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Photo of Baroness Meacher Baroness Meacher Crossbench 1:45 pm, 7th February 2020

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.