Hospices: Funding Debate
Full Debate: Read Full DebateLord Farmer
Main Page: Lord Farmer (Conservative - Life peer)Department Debates - View all Lord Farmer's debates with the Department of Health and Social Care
(4 weeks ago)
Lords ChamberTo ask His Majesty’s Government whether they plan to review how the state funds hospices.
My Lords, I thank all noble Lords contributing to this important and timely debate. Hospice care, which of course includes hospice-at-home care, began 60 years ago and is one of the UK’s greatest achievements. The first voluntary hospice in 1967 paved the way for the modern hospice movement, which spread across the UK and around the world. This movement has profoundly, and I hope permanently, changed how people are treated when they have an incurable condition.
Dame Cicely Saunders’s hands-on medical experience taught her the need for a dedicated place where end-of-life care could be provided. She pioneered and oversaw St Christopher’s Hospice in London where, I believe, my noble friend Lord McColl, the eminent surgeon and professor, who is in his seat today, also practised.
Voluntary sector beginnings are still very much in evidence, with many good partnerships between charities and the NHS alleviating much pressure on the latter and giving freedom to the former. A review of funding would find a highly variable model for hospices; some are run by the NHS, with large annual charitable grants from local friends of the hospice, and others are run by a charity that gets some funding from the NHS. A common hallmark is a holistic, bespoke and patient-centred approach that values their relationships.
Dame Cicely said:
“You matter because you are you, and you matter to the last moment of your life. We will do all that we can not only to help you die peacefully, but also to live until you die”.
We should not forget that all receiving hospice care are on the edge of eternity, and dying peacefully also requires spiritual palliative care.
Why do people matter until the last moment of their lives, and why should we spend scarce resources to help them live until they die? It comes down to human dignity, a word that occurs five times in the United Nations Declaration on Human Rights and refers to the special value of human beings. However, the way it is used needs to be teased apart as it can be deployed to argue both for and against hastening death. Logically, hastening death cannot mean the same thing as helping a sufferer live until they die. The American medical ethicist Daniel Sulmasy identified three different basic meanings of dignity. For time and simplicity, I will focus on the two that can end up being used antithetically to each other in debates over whether end-of-life care should focus on hospice care or assisted dying. Many will say, “But it’s not either/or” and I will come to that. Sulmasy describes intrinsic dignity as the worth or value that a person has by virtue of being human. It is the basis of human rights, equal across all people and, as he says,
“does not admit of degrees”.
Attributed dignity, on the other hand, is a value that we confer on others or ourselves and very much admits of degrees. People can have varying amounts of it, as it depends on the esteem in which they are held in their or other people’s eyes. Importantly, attributed dignity would not have any ethical basis or exist at all without its root in intrinsic dignity.
When those who support assisted dying argue that dependence, loss of control and their self-perception of being a burden diminish that sufferer’s dignity, they are referring to attributed dignity. Opponents of assisted dying do not downplay that threatened loss of attributed dignity but give primacy to a sufferer’s intrinsic dignity. They uphold the moral obligation to bolster their humanity to the utmost, regardless of double incontinence, uncontrolled dribbling and the like. They reduce as much as possible the suffering, but not the sufferer.
Assisted suicide and euthanasia turn a somebody into a nobody. Those who morally justify eliminating a human on the grounds of concern about their attributed dignity undermine the foundation of human rights—namely, respect for the intrinsic dignity and worth of human beings. This is the basis for palliative care and why hospices were set up in the first place. The philosophy of palliative and hospice care over 60 years rests on a sound and logical understanding of the relationship between attributed and intrinsic dignity. It is precisely because the dying’s sense of self-worth and significance can be so ruthlessly challenged when the end of life draws near that their intrinsic dignity needs to be just as, if not even more, ruthlessly reinforced.
Hospice and palliative care professionals’ central concern is to improve, sustain or slow down the loss of quality in a dying person’s life, and that quality is multi-dimensional. When they sense that they are experiencing unconditional love, perhaps for the first time in their lives, that quality might be priceless despite severe pain. In 2023, however, Quebec passed provincial law mandating that medical assistance in dying be available in all hospices. Not only is this one of many measures that bulldozed medics’ conscientious objections, but it is a warning that, down the line, hospices could lose any state funding that they receive if they are not willing to evolve into a completely different service.
Given the financial pressures on the hospice movement, and of course the wider NHS—I am sure that many speakers will articulate that very clearly—we really could be looking at a brave new world where choice for ordinary people to end their own lives today becomes necessity for them tomorrow. Poorer people and those from ethnic minorities already have far less access to hospices than wealthy celebrities and other elites. Yet, if these elites change the law, they will still have choices but might inadvertently narrow them down even further for the less well-off, if hospices and other palliative care begin to wither on the vine. This has happened in jurisdictions such as Canada that have introduced and widened access to assisted dying.
Earlier this year, a report by the All-Party Parliamentary Group on Hospice and End of Life Care found that many hospices and the essential support they provide to dying people, their families and the wider health system are already in funding famine. The Health and Care Act 2022 legally requires integrated care boards—ICBs—to commission sufficient palliative and end-of life care for their population. However, the report found that the funding that hospices receive from ICBs still varies significantly across the country, and hospices describe it as “stubbornly insufficient” and “flat”, while costs rise. Where hospices had seen a change in their funding following the change in law, this had been for the worse, with some reporting a deterioration in funding from commissioners.
Notwithstanding the high value that many hospices place on the independence that flows from being mainly or partly charitably funded, will the Minister explain what her Government will do to ensure that ICBs uphold the Health and Care Act in this important regard? Further, what progress are they making to implement recommendations of the APPG report, particularly the development of
“a national plan to ensure the right funding flows to hospices”,
requiring a review of the state’s own role and responsibilities?
I will finish with an observation from a hospice matron with 20 years’ experience in end-of-life care. She has found that a decision about how someone wants their life to end taken when they were still well, or not too ill, can change when faced with the nearness of death. Paradoxically, the human spirit, she says, often wants to fight on. At present, and most thankfully, hospices facilitate that choice to fight. Will this Government commit to sustaining that choice, and improving how it is delivered, as long as it is within their power to do so?