Cancer patients denied last wish to die at home because of shortage of nurses

May 30, 2011 Cancer, Carers

70,000 cancer patients in England and Wales die in a hospital bed every year, despite wanting to be at home

Denis Campbell, health correspondent guardian.co.uk, Saturday 28 May 2011 20.04
Only 27% of cancer patients are able to die at home, even though a survey suggests 73% would prefer to do so.

Tens of thousands of cancer patients are dying in hospital, despite wishing to end their lives at home, because of a “shameful” lack of NHS nurses, campaigners say.

Only 56% of primary care trusts (PCTs) in England offer around-the-clock community nursing care, which helps those approaching the end of their lives remain among family and friends.

Macmillan Cancer Support has found that 73% of the 157,000 cancer patients who die every year in England and Wales would prefer to spend their last days at home.

But data from the Office of National Statistics shows that 51% of these patients (80,070) die in hospital and another 17% (26,690) in a hospice, with only 27% (42,390) dying in their own surroundings. Care homes account for the remaining 5%.

The mismatch between patients’ wishes and their eventual place of death affects 72,220 people. Some of those who die in hospital do so because their illness means that they cannot remain at home, but campaigners say that many or most of them could have ended their days there with loved ones if there was sufficient nursing support.

“It is a tragedy that, each year, tens of thousands of cancer patients are not able to get their dying wish – to die in their own home, surrounded by their loved ones – because they do not have the support they need. We know that with the right support, 73% of cancer patients would prefer to die at home, but only 27% actually do,” said Mike Hobday, Macmillan’s head of policy.

“It also costs the NHS more money to have them in hospital, where they don’t want to be, showing how badly needed around-the-clock community nursing is. Twenty-four/seven nursing care can significantly reduce emergency admissions and allow patients the end-of-life care that they want, yet it is only available in just over half of England’s PCTs.”

Conservative MP John Baron, the chairman of the all-party parliamentary group on cancer, said: “It is shameful that so many people with cancer cannot die where they wish – in their own homes – because of a lack of community nursing provision. Those areas that currently do not provide out-of-hours community nursing should make plans to address this issue.”

Their calls for action came as research revealed how much time many cancer patients spend in hospital as they near the end of their life.

The study, in the European Journal of Cancer, found that in 2006 in England, 58% of 147,000 people with the disease in the last year of their lives had been admitted to hospital during that time, and 25% had spent more than 10% of their time as an inpatient.

“This research shows that a considerable number of cancer patients are spending significant amounts of time in hospital in the last year of life, despite many patients telling us that they want to die at home” said Ciarán Devane, the chief executive of Macmillan. “It is wrong to deny people the choice about where they die.”

Health minister Paul Burstow accepted that existing provision was inadequate. “People deserve care at the end of life that is compassionate and gives them the choice over where they die and how they are cared for. Progress is being made in improving end-of-life care, but I know more needs to be done. We want to make sure everyone gets the highest quality of care, in the place of their choice,” he said.

More is being done to improve training, promote best practice and ensure that proper end-of-life care exists across NHS and social care services, he added. “The government believes that people should be given a choice about where they receive end-of-life care. I am determined to increase the pace of change to make this choice a reality,” he said.

Joe Levenson of the National Council for Palliative Care said: “Every minute someone dies in the UK, but many people each year, including tens of thousands with cancer, are still not receiving the type of end-of-life care they want and need. Much more needs to be done to improve access to 24/7 palliative care, including in people’s own homes, where so many people would prefer to die.”

Sue Brooks, a retired health and safety officer in Berkshire, lost her husband, David, to cancer. She has called for better round-the-clock NHS nursing care so that terminally ill people can die at home: “David was diagnosed with lung cancer in July 2005 and by that December he was very, very ill. We agreed with the doctor that he would spend some time in a hospice to give me a break and let me get out and buy Christmas presents for our three children. But by the time he was ready to come home, he was too sick to be moved.

“The hospice was wonderful, and I was with him when he died. But we weren’t at home, and he strongly wanted to die at home. He had even drawn a sketch of how he wanted the room at home to look when he died.

“If we’d been able to get 24/7 nursing cover, maybe he wouldn’t have had to go into the hospice at all. Sadly, it’s a postcode lottery as to who gets that. But that’s actually costing the NHS more money, as it’s cheaper to nurse someone at home than keep them in hospital.

“Most terminally ill people want to die at home, but the majority don’t get the chance. Do you not deserve some respect at that time of your life, when you have given everything? It’s a tragedy that people who are sick and know they are dying can’t have their very last wish.”

Sue Brooks, a retired health and safety officer in Berkshire, lost her husband, David, to cancer. She wants better round-the-clock NHS nursing care so that terminally ill people can die at home.

“David was diagnosed with lung cancer in July 2005 and by that December was very, very ill. We agreed with the doctor that he would spend some time in a hospice to give me a break and let me get out and buy Christmas presents for our three children. But by the time he was ready to come home, he was too sick to be moved.

“The hospice was wonderful, and I was with him when he died. But we weren’t at home, and he strongly wanted to die at home. He had even just drawn a sketch of how he wanted the room at home to look when he died.

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