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To say that he had a good death may seem like small comfort, but in one respect Ian was fortunate: he lived in Buckinghamshire, an area served by the Iain Rennie Hospice at Home charity, which provides palliative care for those who are terminally ill and wish to die at home. During the last three weeks of his life the charity’s nurses visited him each day, controlled his pain and supported his family. “His death was far too quick but the nurses made him comfortable and he was where he wanted to be,” says his wife, Linda.
June Proffitt talks about the death of her husband, Den, with the same sense of sadness but also with a sense of struggle. Den had been suffering from heart disease for 27 years when he died in 2001, at the age of 75, so his death was not unexpected and June remains angry at the lack of specialist support they received from the services in Swindon. She nursed him throughout much of his illness, and there were many moments when he was in pain and without dignity, she says.
“He felt neglected and used to sit and cry sometimes. For heart patients there’s nothing, no help and discussion about the fact that he was dying.”
As the debate about having a good death, and about euthanisia, continues, Petron and Proffitt’s stories are instructive. Why do some patients get the palliative care that enables them to die peacfeully while others die in pain and distress? One answer lies in a survey of 1,500 people questioned about their attitudes to death — and the experiences of their family and friends — for How to Have a Good Death, a BBC programme to be shown on Thursday. Dying in old age is often neither peaceful nor dignified, and cancer patients are more likely to have a good death than those with heart disease, it appears: pain and distress were better controlled for patients with cancer, and these patients were more likely to have talked with health professionals about the management of their final days.
This finding does not surprise doctors. Palliative care, pioneered in 1967 by Cicely Saunders when she founded St Christopher’s Hospice in Sydenham, grew up around cancer and retains this association, says Professor Charles Coombes, who runs the Cancer Research UK laboratories at Imperial College, London, and heads its department of cancer medicine.
“It’s a measure of the greater acceptance by cancer carers that cancer can kill you — when it gets to a certain stage it’s obvious that this outcome is highly likely if not inevitable, and people want to be reassured that their death is not going to be painful. So one of our jobs is to try to give people a good death, which may mean advising on pain control, on home care, and will mean briefing relatives and carers.
“Whereas with cardiac and other chronic illnesses there isn’t a tradition of accepting that death is a possible outcome. When you specialise in cardiology you’re less likely to have training or experience of talking to people about dying. The rest of the medical profession is more focused on prolonging life than on death.”
As the director of prevention and care at the British Heart Foundation, and a part-time GP, Mike Knapton has a different perspective. While it is usually obvious when a patient with cancer can’t be cured, with heart disease that may not happen, he says. “It’s relatively easy for a clinician to identify when cancer has not been cured and when we’re moving into a palliative phase,” he says.
“It’s much harder to do that in the context of heart disease because people often recover well after a heart attack and then have episodes in which they lose function. But there’s never a point at which you say they have moved from cure to care. So it’s difficult to start a conversation about planning ahead for death because you don’t want to appear to be throwing in the towel on behalf of the patient.”
Heart disease is also more prevalent than cancer, which makes widespread palliative care less likely, Dr Knapton points out. “With the best will in the world it’s unlikely that palliative care teams could take on that volume of work. Then there’s the business of skilling up the general healthcare workforce in palliative care.”
This is expensive. Two years ago the Government commited £12 million to its End of Life programme, through which staff who work with those who are terminally ill are to be trained. Yet the BBC survey confirms the widespread feeling that a good death is far from being a normal experience in Britain and that few people have access to palliative care. Most people would like to die at home, but only 20 per cent do so.
The majority die in hospital — an institution that focuses on life-prolonging treatment rather than on contemplation or spiritual values. And while hospice care is widely applauded, Britain has only 3,000 hospice beds and so relatively few people die there. Ironically, elderly people are least likely to have access to palliative care, and only 33 per cent of those reported in the survey were said to have experienced a good death.
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