13 February 2016
Macmillan Cancer Support says the government must give end of life care a major overhaul to prevent more “pain and heartbreak”.
Nearly one in every ten people who died with cancer in England in 2014 spent the last 48 hours of their lives without adequate pain relief, according to the latest results from the National Survey of Bereaved People. [i]
The shock findings equate to more than 12,500 people spending their last days in pain, Macmillan Cancer Support estimates. [ii]
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. [iii] Previous Macmillan research shows that most (73%) of people with cancer would prefer to die at home [iv], and yet recent figures from the ONS tells us only a minority (30%) are able to do so [v].
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.
Today’s 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. [vi]
For further information, please contact:
Patrick Pringle, Media & PR Officer, Macmillan Cancer Support
0207 840 4891 (out of hours 07801 307068)
Notes to Editors:
About Macmillan Cancer Support
When you have cancer, you don’t just worry about what will happen to your body, you worry about what will happen to your life. Whether it’s concerns about who you can talk to, planning for the extra costs or what to do about work, at Macmillan we understand how a cancer diagnosis can take over everything.
That’s why we’re here. We provide support that helps people take back control of their lives. But right now, we can’t reach everyone who needs us. We need your help to make sure that people affected by cancer get the support they need to face the toughest fight of their life. No one should face cancer alone, and with your support no one will.
To get involved, call 0300 1000 200 today. And please remember, we’re here for you too. If you’d like support, information or just to chat, call us free on 0808 808 00 00 (Monday to Friday, 9am–8pm) or visit macmillan.org.uk
[iv] Statistic taken from Macmillan February 2010 online survey of 1,019 UK adults living with cancer. Seventy-three percent of people with cancer said they would prefer to die at home if all their concerns about dying at home (such as access to pain relief, round the clock care, and support for their family and carers) were addressed.
[v] Office for National Statistics. Mortality statistics: Deaths registered in England and Wales in 2014.