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Chemotherapy bags in a hospital cancer ward.
Chemotherapy bags in a hospital cancer ward. Macmillan says too many patients do not have enough choice over where they end their lives. Photograph: Christopher Thomond/The Guardian
Chemotherapy bags in a hospital cancer ward. Macmillan says too many patients do not have enough choice over where they end their lives. Photograph: Christopher Thomond/The Guardian

Thousands who die with cancer spend last days in pain, study finds

This article is more than 8 years old

Macmillan says patients in UK should not be spending end of life in pain simply because of poor medical support at home

Nearly one in 10 people who died with cancer in England in 2014 spent the last 48 hours of their lives in pain, according to a survey.

The findings from the National Survey of Bereaved People (Voices) equate to more than 12,500 people spending their last days without adequate pain relief, Macmillan Cancer Support estimates.

The charity said a lack of support at home, including pain relief, means that people with cancer at the end of their life do not have enough choice over where they would like to be cared for and many are spending their final days in oversubscribed hospital beds against their wishes.

“Quite simply, in the 21st century people should not be spending their final hours in pain in this country because the support is not there,” said Lynda Thomas, chief executive of Macmillan Cancer Support. “It is tragic for the individual and distressing for family and friends who witness their loved one in pain.”

Macmillan urged the government to fix England’s “dismal” variation in the quality of end-of-life care by funding improvements recommended in an independent review of choice at the end of life published in February 2015.

The review from the Choice in End of Life Care Programme Board concluded that a meaningful level of service improvement could be achieved for a relatively modest investment of £130m in social care and NHS commissioned services to deliver a national choice offer in end-of-life care.

It recommended that every local area establish 24/7 end-of-life care for people outside hospital and for details of people’s choices to be held electronically in a palliative care coordination system.

“The review of choice at the end of life published last year set out a comprehensive set of recommendations that would help improve the end-of-life care in England,” said Thomas. “The government must fund and implement the recommendations of the review; we cannot carry on with the way things are.”

Macmillan has developed a care at home model in Midhurst, West Sussex, which includes clinical interventions from blood/blood product transfusions to IV antibiotics being provided at home or in a community setting. A team led by a consultant is responsible for the patient.

Analysis by Macmillan, based on Office for National Statistics data, found that people with cancer who receive inadequate pain relief at home are twice as likely to die somewhere they did not want to, compared with those who received complete pain relief. Previous Macmillan research showed that 73% of people with cancer would prefer to die at home. Yet recent figures from the ONS showed that only 30% are able to do so.

Ann Osborn, 63, from London, cared for her father when he was diagnosed with terminal bowel cancer in 2010.

“My father wanted to die at home but there just wasn’t a way to make that possible,” she told Macmillan. “Alone in the early hours of the morning, he would call me in agony and I was eventually given the liquid morphine to make him more comfortable. Near the end, he was scared. We couldn’t cope and had to put him in a residential care home. I appreciate people should have the choice to be at home but there needs to be better social support to make this happen.”

The 2014 survey was sent to approximately 49,000 people. More than 21,000 (21,403) returned the survey, of which 6,703 were from relatives and carers of people who died from cancer.

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