Close to 600,000 people die in the UK annually – a figure that was higher during the pandemic, but has since fallen back. More than half are at home or in a care home; most of the rest are in hospital. But for about 28,000 people who need specialist end-of-life care (nearly 5% of all deaths), a hospice is where they receive it. A much larger number receive palliative care from hospices in the community (more than 80% of hospices’ work is delivered in this way, through partnerships with the NHS). Staff also support the relatives of those who are dying, including children. But their valuable work is now in jeopardy as the sector faces its worst funding crisis in 20 years.
Hospices are well-regarded and rightly so. The Care Quality Commission noted in 2017 that they provided more outstanding care than any other service it regulated. Many more people would choose to die in hospices if they could. Yet, palliative care has traditionally not been a high-status area of medicine. And like so much that is associated with death, hospices tend to stay out of sight and out of mind until people need them.
Having emerged from the voluntary sector, hospices rely on a combination of NHS contracts and donations. But rising costs and other pressures have led to overspends, and left fundraisers unable to plug gaps. Last month, Birmingham Hospice cut the equivalent of 45 full-time posts and closed a third of its beds. The sector’s umbrella charity, Hospice UK, says most of its 211 members find themselves caught between NHS England and integrated care boards – with the former insisting that local commissioners are responsible for end-of-life provision, while the latter complain of not having enough money. (In April, the Welsh government responded to shortfalls with an additional £4m for Wales’s 12 hospices.)
Last week, Lord Darzi was tasked by the health secretary, Wes Streeting, with investigating the state of the health service. So far, Mr Streeting has signalled an intention to invest in primary and community services – which now receive less than 10% of the overall £165bn NHS budget in England – as well as a determination to get hospital waiting lists down. But if local surgeries are the crucial way into the health system (its “front door”, as Mr Streeting says), hospices are an important way out. With annual deaths predicted to rise by about 130,000 by 2040, the need for end-of-life care is growing. Lord Darzi should view the NHS’s relationship with hospices as part of his remit.
Palliative care is not a sexy subject. But a more open discussion of the needs of dying people, now and in future, would be beneficial. New national standards for end-of-life care have been called for by the sector and in a recent report by MPs. This could provide clarity and an impetus for improvement. But a complete solution will require engagement from policymakers in the government and the NHS across all four nations. As the palliative care doctor Rachel Clarke put it in her book Dear Life, a “cradle-to-grave” health service should take responsibility for helping people to die in peace.
