Readers have responded to a recent article on the urgent need for palliative care reform, with several arguing that improving end-of-life care and legalising assisted dying should be pursued together.
A personal story of suffering
Liz Wilson from Coventry shared the story of her husband, John, who died in March aged 43 after nearly six years of bowel cancer treatment. He endured more than 70 rounds of chemotherapy and spent his last three months in a hospice receiving the best palliative care available, yet still suffered terribly.
“Some pain cannot be controlled quickly, and some suffering cannot be treated at all,” she wrote. One evening he screamed in agony while stranded in a bath for nearly an hour before relief took effect. As the cancer swelled his torso, he slowly suffocated, and no drug could prevent it. He was fully aware throughout and told her repeatedly that he could not go on.
Wilson argues that most hospices are charities receiving very little state funding, and that must change. Better palliative care will spare many people needless suffering, but it cannot spare everyone. “No amount of funding would have given John what he wanted: the chance to face the inevitable on his own terms,” she said.
Funding and savings
Stephen Kirkham from Lytchett Minster, Dorset, a former consultant physician at an NHS hospice for 20 years, highlighted the financial case for investment. He cited Nuffield Trust figures showing the UK spends £6.6bn on emergency hospital care in the last year of life, compared with only £1.1bn to run all 204 UK hospices, including 24 NHS hospices.
He noted that it now costs around £5m annually to provide a comprehensive specialist palliative care service to a population of 250,000 across all settings, implying a total cost of around £1.4bn for the UK population of 70 million. If planning helped avert only 10% of emergency admissions in the last year of life, the money saved would more than fill the funding gap.
The limits of medicine
Sophie Blake from Hove, East Sussex, who is living with incurable secondary breast cancer, raised the question of those whose suffering even excellent palliative care cannot relieve. She is allergic to opioid painkillers, and after the birth of her daughter, her pain could not be properly controlled.
“When I am told that better palliative care will remove the need for assisted dying, I have a very simple question: what if it cannot?” she asked. She stressed that since the fall of the terminally ill adults (end of life) bill, terminally ill people have not become less frightened about what lies ahead.
“Excellent palliative care can transform many deaths. It cannot guarantee that every dying person’s suffering can be relieved,” she concluded. The question for those who opposed assisted dying remains: what is the answer for those people?
