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.¹

The shock findings equate to more than 12,500 people spending their last days in pain, Macmillan Cancer Support estimates.²

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.³

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 so⁵.

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.⁶

Reference

1. Office for National Statistics, 2015. National Survey of Bereaved People 2014 (VOICES).  9.4% of all respondents disagreed or strongly disagreed that the cancer patient had sufficient pain relief in the last two days of life (Q35).  http://www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=tcm:77-407293 (accessed January 2016)

2. Ibid. Macmillan estimation of 12,500 people each year calculated by applying 9.4% to England 2014 cancer mortality figures of approximately 137,500 deaths (ICD-10 codes C00 to D489). Office for National Statistics. Mortality statistics: Number of deaths with an underlying cause of cancer, deaths registered in 2014, England and Wales: http://www.ons.gov.uk/ons/about-ons/business-transparency/freedom-of-information/what-can-i-request/published-ad-hoc-data/health/november-2015/number-of-deaths-with-an-underlying-cause-of-cancer.xls (accessed January 2016)

3. Office for National Statistics, 2015. Bespoke analysis for Macmillan Cancer Support of the National Survey of Bereaved People 2014 (VOICES). Our interpretation of the analysis found that people with cancer who receive poor (partial or no) pain relief at home are twice as likely to not die where they wanted to compared to those who received complete pain relief (some or all of the time) (49% vs 23%). http://www.ons.gov.uk/ons/about-ons/business-transparency/freedom-of-information/what-can-i-request/published-ad-hoc-data/health/december-2015/index.html

4. 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.

5. Office for National Statistics. Mortality statistics: Deaths registered in England and Wales in 2014.

6. Office for National Statistics, 2015. Bespoke analysis for Macmillan Cancer Support of the National Statistics National Survey of Bereaved People 2014 (VOICES). Our interpretation of the analysis found that of people dying with cancer, three in four (75.2%) people who receive good or excellent out-of-hours care die in their preferred place, compared with just half (48.5%) of those who receive poor out-of-hours care http://www.ons.gov.uk/ons/about-ons/business-transparency/freedom-of-information/what-can-i-request/published-ad-hoc-data/health/december-2015/index.html

Source: Macmillan Cancer Support