Nearly one in ten people who died with cancer in England in 2014 spent the last 48 hours of their lives in pain, according to the latest results from the National Survey of Bereaved People.
The shock findings equate to more than 12,500 people spending their last days in pain, Macmillan Cancer Support estimates.
New analysis by Macmillan, based on ONS data also 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 shows that most (73%) of people with cancer would prefer to die at home4, and yet recent figures from the ONS tells us only a minority (30%) are able to do so.
Macmillan is concerned that a lack of support at home, including pain relief, means that people with cancer at the end of 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.
Macmillan is urging the government to fix England’s ‘dismal’ variation in the quality of end of life care, by funding improvements recommended in a major independent review of choice at the end of life published in February 2015.
Ann Osborn, 63, from London, cared for her father when he was diagnosed with terminal bowel cancer in 2010.
She says: “The experience was awful, a lot of the time he was in terrible pain. My father wanted to die at home but there just wasn’t a way to make that possible.
“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. A proud man, he was uncomfortable with me being his nurse, seeing things no daughter should.”
Lynda Thomas, Chief Executive of Macmillan Cancer Support, says:
“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. It is tragic for the individual and distressing for family and friends who witness their loved one in pain.
“The last days of someone’s life are precious and it is completely unacceptable that people lose the little control they have at this important time, simply because they are not being cared for in the way that they should. In many cases, family and friends are being given an unfair ultimatum: keep your loved ones at home, where they want to be, without the resources to make them comfortable, or take them to hospital against their wishes, where their pain will at least be kept under control. No one should have their last memories of a loved one defined by these sorts of impossible choices.”
“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. The government must fund and implement the recommendations of the review; we cannot carry on with the way things are.”
Recommendations from the independent review of choice at the end of life include access to 24/7 nursing, a record of a person’s preferences and fast and free access to social care.
These figures emphasise the need for such measures, as Macmillan’s analysis found that people with cancer who receive good or excellent out-of-hours care are 55% more likely to die in their preferred place compared with people who have poor out-of-hours care.