Hospice care is a right, not a luxury
The surreal tranquillity of 2020’s lockdown spring, long walks, enforced peace, was shattered by my husband’s diagnosis. Simon, my happy, strong soulmate, had stage 4 lung cancer; unusual, in a non-smoker. What followed, described by one doctor as “a truly awful litany”, included a stroke, which left this bear of a man unable to walk, with fractured speech, poor swallow and impaired sight. Five months later, he died; his cancer responsive to treatment, his body otherwise irreparably broken.
But our pandemic hell held a fragment of gold: hospice care. Often thought of as places, hospices provide multidisciplinary support, mainly in people’s homes. Clinical expertise in palliative care – symptom control where treatment is exhausted – is dispensed, alongside practical, emotional, social and spiritual support, for the ill and their loved ones. Day care, respite or in-patient provision (vital, despite the mantra that most of us want to die at home) are there if needed.
As with my mother, who died in London’s Marie Curie hospice decades ago, Simon’s care was a mix of extraordinary competence and compassion. Initially at home, co-ordinated by a wonderful community palliative care nurse, and then, for his last week, in Dorchester’s Weldmar hospice, with me by his side. We were lucky: a Marie Curie survey of carers of people who died at home during the pandemic (40% more than usual did) revealed that most didn’t get all the help they needed managing pain (64%) or out-of-hours support (65%). Overall, 76% didn’t get the support they needed.
Covid stress-tested a struggling system; palliative care was compromised because it is not recognised as essential. The NHS website states: “Hospice care is free, paid for through a combination of NHS funding and public donation.”
True, but to be clear: the state contributes under 30% of the £1.6bn hospices spend, there is no formula for how much each hospice gets (they negotiate individually), and the rest is charitable. Provision is thus patchy: wealthy areas are better served than poor, and some places have no specialist service.
Dame Cicely Saunders, founder of the modern hospice movement, opened London’s St Christopher’s hospice in 1967, essentially outside the NHS. Baroness Finlay, crossbench peer and professor of palliative medicine, tells me that Saunders took this approach because “getting the NHS to take hospice care seriously would have been like turning a tanker around”.
With the number of people dying in the UK with multiple and complex conditions projected to increase by 42% by 2040, and about half of all who need palliative care now not getting it, the tanker must be turned. The health and care bill going through parliament will determine how the NHS works for the foreseeable future, and has the power to pull palliative care out of the shadows.
As Finlay told me: “The government could improve care without increasing overall cost, by explicitly requiring commissioning of specialist palliative services. The bill will launch 42 integrated care systems in England, new geographically defined health and social care partnerships, yet doesn’t mention palliative care.”
Good care costs less than poor care: avoidable crises lead to emergencies and inappropriate hospital admissions
Good care costs less than poor care: avoidable crises lead to emergencies, inappropriate hospital admissions, people stuck there, and, later, mental health problems in those both grieving and traumatised.
The government has called palliative care “after-care”. This is chilling, reminiscent of Dr Rachel Clarke’s book, Dear Life, where she quotes an oncologist saying of a patient: “Send her to the palliative dustbin.”
Baroness Finlay agrees: “After-care implies nothing can be done. There’s always something, but you must get in early to treat pain, nausea, or other exhausting symptoms. Attend to their needs, and give people back the life they have left.” Her words echo Saunders’s wisdom, that “time is a matter of depth, not of length”.
The amendment to the bill proposed by Finlay, due to be debated next month, is that all areas must have multi-professional specialist palliative care services, specified and funded, determined by population needs. It is accompanied by criteria defining what this service does, and that it must be available wherever people are, from their homes to the streets, prisons to hospices, all day, every day. It is supported by charities for people living with terminal illness including Marie Curie, Sue Ryder, Together for Short Lives and Hospice UK.
By accepting Finlay’s amendment, or bringing forward their own, the government must, for the first time, enshrine palliative care as a statutory service, committing to fund the core clinical support needed to prevent a pandemic of painful death and anguished bereavements. Hospices can then continue fundraising for their softer but essential work, alongside time given freely by volunteers.
When Simon reached Weldmar, he was speaking little, but smiled, and said: “This is a good place to be when you’re not feeling well.” Within the loving embrace of a hospice, I received the support he was so desperate to see I had, he the compassionate safety he deserved, as well as a last breakfast of whisky gently sipped from a teaspoon.
Dr Sophie Olszowski is a former NHS director of patient involvement