The current debate about assisted dying poses a challenge for the UK’s internationally renowned hospice movement. Its founder, Dame Cicely Saunders, was adamantly opposed to “voluntary euthanasia” as it was called in the 1960s, while admitting that unless one took physical pain seriously for those suffering from advanced or terminal illness, the right to choose the time and place of one’s death was understandable. “We have a responsibility to work so that no one should reach the desperate place where they feel they have to ask for that sad way out,” she said in 2015. Saunders pioneered the strategic use of palliative medication in hospices, writing early on that developments in clinical pharmacology were “waiting to be understood and used”.
When St Christopher’s Hospice was opened by Saunders in south London in 1967 – the first of its kind in Britain – it was to address a systemic public health failure in the care of the dying. Today more than 220 hospices operate successfully across the UK as independent local charities. Yet end-of-life care remains inadequate. A recent Ombudsman report concluded: “The experience of people who are dying, and their loved ones, of the care provided by the NHS is a recurring theme in complaints.”
Provision for elderly social care, now largely in the private sector, can no longer be easily extricated from the renewed discussion about the “right to die”, especially in an ageing society. As Rowan Williams suggested in the 10 May issue of the New Statesman, some may choose to end their lives rather than face the prospect of spending their last days in an underfunded care home, staring at the walls and waiting to die. A difficult question for any new government will be how the economics of social and palliative care and the ethical choices associated with the right to die are to be untangled.
“We want to remain independent because we need freedom of thought and action,” insisted Saunders. While some elements of hospice care are eligible for NHS funding, two-thirds of operating costs are raised locally. Yet what is regarded as a public health success story is struggling in some places to retain the independence which secured the original achievement. Even before Covid struck in 2020, a number of hospices were experiencing financial difficulties. According to Dr Heather Richardson at St Christopher’s: “It is clear that hospice care looks very different post-pandemic.” During the 2020 lockdown, visiting stopped, volunteers were sent home, and the hospices became processing centres for rising numbers of dead, forgoing all the rituals of personal care that had become central to their culture. “Care became wholly transactional and no longer relational after Covid,” she said. “Don’t go too near, don’t hug or touch, don’t return to the close relationships and rituals of last farewells or the slow unfolding of bereavement.”
The pandemic made people fear institutional care, especially once high Covid death rates in care homes caused a public scandal. Hospices came under pressure to increase peripatetic home care and decrease in-patient and day-patient services. Transitioning to more extensive “hospice at home” schemes may cut costs, but threatens the foundations of the hospice ethos. For Saunders, treatment at home was never enough; only a new kind of building could guarantee whole-person palliative care, distinct from the hopelessness of the workhouse or geriatric ward. A new architecture of care was required, combining clinical quality and security with a life-affirming spirit of place, and that is what St Christopher’s and its successors have achieved.
The symbolic power of the hospice building was demonstrated in 2014, when 500 people attended a meeting protesting the proposed closure of Pilgrims Hospice in Canterbury. “It’s only bricks and mortar,” advocates of closure argued, suggesting that hospice care could be provided just as meaningfully at home. John Harries, resident-researcher at St Christopher’s, followed the saga closely. The arguments against closure, he saw, came from families of those who had died within hospice walls, and for whom the building had “achieved the status of a sacred place”: for them, “closure was seen as an act of desecration”. For Harries, “Care is an invisible abstraction, but for many it is symbolised and made concrete by the building.”
The consequences of reducing the debate about palliative and social care to a choice between public sentiment and economic efficiency is evident from the story of hospice care in America, now almost entirely home-based. Writing in the New Yorker in 2022, the journalist Ava Kofman noted: “For-profit providers made up 30 per cent of the field at the start of this century. Today, they represent more than 70 per cent.” Originally modelled on Cicely Saunders’s vision of an independent, self-funding palliative care movement, the hospice, she wrote, “has evolved from a constellation of charities, mostly reliant on volunteers, into a 22 billion-dollar juggernaut funded almost entirely by taxpayers”.
California had recently suspended new hospice providers after “state auditors raised alarms about a raft of tiny new hospices, some with fictional patients and medical staff, that were engaged in ‘a large-scale, targeted effort to defraud Medicare.’” In Los Angeles county alone, “there are more than a thousand hospices, 99 per cent of them for-profit”. The situation grimly recalls Dead Souls, Gogol’s satirical novel in which estate lists of dead or dying serfs are purchased as collateral by the enterprising Chichikov in order to raise a bank loan that will restore his fortunes. When private equity steps in, the “dignity in dying” ethos rather goes out of the window.
We may think it couldn’t happen here, but it already has. Some 80 per cent of care homes, once the province of local authorities, are now in private hands, inadequately regulated and leveraged for debt by private equity companies. “At the moment it is the Wild West out there,” admitted the former health secretary Jeremy Hunt, in a 2021 Panorama television interview, which revealed that one home investigated was paying back £148 in interest every week on each bed. This is why hospices have been dragged against their wishes into the assisted dying debate, offered up as the only alternative to a flight to Switzerland, given the declining reputation of mainstream social care. Yet they are needed now more than ever.
It was the design of St Christopher’s as a prototype – commissioned from architects Stewart, Hendry & Smith – that kick-started a new era in the architecture of residential and palliative care. Since then, other providers in the field of palliative care, such as Maggie’s Cancer Care Centres, have followed suit. These non-residential, drop-in centres offer counselling, friendship and support in buildings described by Maggie’s founding partner, Charles Jencks, as “an emergent building type that is not quite a museum, church, hospital or home but has aspects of each.” Today there is a revival in almshouse provision, currently exemplified by Witherford Watson Mann’s new Appleby Blue Almshouse in Bermondsey, of which the architectural critic Carolyn Steel has written: “Appleby Blue exudes a quality that all great buildings share: a sense of humanity that reminds us of what all architecture is ultimately about: helping people to lead good lives.”
Of all these new and re-invented building types, the hospice nevertheless retains a special place in the modern imagination. Its telos is unequivocal: this is where you come to die and where you will be loved and remembered. No town or city in the UK is now complete without its hospice, a new and worthy iteration of that “serious building on serious earth”, commemorated by Philip Larkin in his poem “Church Going”. It is the ultimate house at the end of life: a house that has become a home.
A new edition of Ken Worpole’s “Modern Hospice Design: the Architecture of Social and Palliative Care” is out now.
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