28 April 2017
THOUSANDS OF CANCER PATIENTS DIE IN HOSPITAL AGAINST THEIR WISHES
End the taboo: We need to talk more about death so people can die where they choose and free from pain, says Macmillan Cancer Support
New findings in Macmillan’s report include:
- Just 1% of people with cancer want to die in hospital. Yet 38% of people – more than 62,000 – who die from cancer die in hospital each year in the UK
- Most people with cancer (64%) want to die at home
- Almost one in four people with cancer have thought about dying from the disease ‘constantly’ or ‘often’
- But more than a third who have thought about death haven’t shared these feelings with anyone
- Well over half of the UK population think we don’t talk enough about death
- Macmillan calls for next government to prioritise end of life care and for people to have more open and honest conversations about death
More than 62,000 people die of cancer in hospital each year in the UK[i] – despite a significant majority of people with cancer stating that they would like to die at home, according to a new report published today by Macmillan Cancer Support. It shows that just 1% of people with cancer want to die in hospital, with most (64%) preferring to die in their own home, or in a hospice (18%)[ii].
In ‘No Regrets - How talking more openly about death could help people die well’, the charity warns that a ‘crisis of communication’ about death is preventing people from having their dying wishes met, but Macmillan believes that having earlier conversations could be key to improving this.
‘No Regrets’ reveals the challenging obstacles people – and especially cancer patients – face when discussing death, and argues that this is seriously harming people’s access to the right care and support when they die. The research, carried out by YouGov, found almost one in four (23%) people with cancer think about their death ‘constantly’ or ‘often’[iii] during treatment, but less than one in 10 (8%) have shared their feelings with their healthcare team[iv]. The charity warns that more than a third (35%) of people with cancer affected by thoughts about death are ‘suffering in silence’ and haven’t shared their feelings with anyone at all[v] – with more than a fifth (22%) of this group saying this is because they didn’t want to bother anyone[vi].
In No Regrets, Macmillan argues that talking more about death could help people plan for their final days. This is crucial because when healthcare professionals have a record of where someone would like to die, that person is almost twice as likely to die in the place of their choosing[vii]. The report outlines the benefits of planning for a person’s future care – known as advance or anticipatory care planning.
Macmillan is calling for people to have more open and honest conversations about death, as research carried out by ICM found almost two-thirds of the UK population (64%) believe we don’t talk about it enough[viii]. As a country, however, we are extremely unprepared for death, with 48% of us having made no preparations at all, and 62% not having written a will[ix].
The importance of talking was something Vivien Lee, age 55, from Merseyside, discovered when her father, Peter, was dying of lung mesothelioma – an asbestos-related cancer – last year. In the months before he died, Peter talked frankly with his healthcare team and daughter about his wishes.
Vivien says, “Talking about dad’s worries was so important and I will be forever grateful that we had those conversations. Together, we discovered that his biggest fear was that he would die in pain, so we worked through this issue with his care team.
“Because he was honest and open, we could make sure that his last few days were as pain-free as possible. We didn’t leave anything unsaid and this brought us closer together. I knew exactly what he wanted and what he was scared of, so, when it came to the end, I knew that he got what he wanted. This made it so much easier to cope with his death.”
Lynda Thomas, Chief Executive of Macmillan Cancer Support said, “At Macmillan, we believe there is such a thing as a ‘good’ death, which is possible when someone has the right care, their pain is managed, and – where possible – they have choice about where they die.
“The only certainty in life is that we will all die. What is less certain is where and what experience we will have when it happens. It’s only by talking about dying that we can agree what is really important to us, and put plans in place to make that happen.
“It’s vital that the next Government prioritises care for people at the end of their lives, so more people can have a say about what matters to them at the end.”
Macmillan Cancer Support is urging the next Government to commit to improving end of life care so that people approaching the end of their lives receive the right care and support, in the place of their choice.
-Ends-
For further information, please contact:
Eleanor Wilkinson, PR & Media Officer
02070912467 (out of hours 07801 307068)
ewilkinson@macmillan.org.uk
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
[i] In 2015 in England and Wales, 37% of people aged over 28 days who died from cancer died in hospital (55,256 people), 30% died at home, 17% died in a hospice, 14% died in a care home and 2% died elsewhere. ONS, Deaths Registered in England and Wales in 2015 (Released November 2016, accessed April 2017) https://www.ons.gov.uk/file?uri=/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/datasets/deathsregisteredinenglandandwalesseriesdrreferencetables/2015/drtables15.xls ISD Scotland. Place of death for cancer. http://www.isdscotland.org/Health-Topics/Cancer/Cancer-Statistics/Place-of-Death/ (accessed April 2017). In 2015 in Scotland, 43% of people who died from cancer died in a hospital (6,983 people), 30% died at home, 19% died in a hospice and 8% died in a care home or elsewhere. Equivalent data not available for Northern Ireland. On this basis we estimate that more than 62,000 cancer deaths occur in hospital each year in the UK.
[ii] Yougov Plc. (2017). Macmillan commissioned YouGov Plc. to survey UK adults with a cancer diagnosis. Total sample size was 2005 people with a previous cancer diagnosis, and 1878 people answered our questions relating to death and dying. Fieldwork was undertaken between 20th - 29th March 2017. The survey was carried out online. The figures have been weighted and are representative of the population of those living with cancer in the UK.
Yougov Plc. (2017). Respondents were asked: “If the right care and support was available in any of these locations, where would you prefer to spend your final days?”
[iii] Yougov Plc. (2017. Respondents were asked: “Have you thought about the possibility that you may die of your cancer?” Answers included constantly (6%), often (16%), sometimes (27%), occasionally (26%), never (24%) and prefer not to say (0%)
[iv] Yougov Plc. (2017). Respondents who had thought about the possibility they may die from their cancer were asked: “Since you were diagnosed, have you ever shared your thoughts or feelings about death or dying with any of the following people? Please tick all that apply.”
[v] Ibid iii
[vi] Yougov Plc. (2017). Respondents who hadn’t shared their thoughts or feelings about death with anyone were asked: “You said that you have not ever shared your thoughts or feelings about death or dying with anyone. Could you tell us why this is? Please select all that apply.”
[vii] 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 and to whom the bereaved believed that staff had a record of where the cancer patient would like to die, 74% died in their preferred place. Of people dying with cancer and to whom the bereaved believed that staff did not have a record of where the cancer patient would like to die, 39% died in their preferred place. 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
[viii] ICM Unlimited (2017). Macmillan commissioned ICM Unlimited to survey the UK general public. Total sample size was 2096, and 1786 answered our questions about death and dying. Fieldwork was undertaken between 22nd-24th March 2017. The survey was carried out online. The figures have been weighted and are representative of the UK adult population.
ICM Unlimited (2017). Respondents were asked: “To what extent would you agree or disagree with the following statement about death? We don't talk about death and dying enough in this country”. 18% strongly agree, and 47% somewhat agree.
[ix] ICM Unlimited (2017). Respondents were asked: “Have you prepared for your death in any of the following ways?”