‘Fighting talk’ can leave cancer patients unable to talk about death and dying

Originally published: 15 May 2018

Reluctance to talk honestly about death is preventing people with cancer from dying ‘well’, leading charity warns

Findings in Macmillan’s report include:

  • The perceived need to ‘fight’ cancer often means people with a terminal diagnosis aren’t getting the right support to plan for end of life
  • More than one in four people with cancer (28%)ᶦ have difficulty talking honestly about their feelings around cancer
  • Gulf in communication means thousands of people with cancer unnecessarily die in hospital against their wishesᶦᶦ
  • Advance Care Planning, discussing end of life wishes, can significantly improve end of life experiencesᶦᶦᶦ.

The need to ‘fight’ and remain positive could be having a negative effect on people living with cancer, a new report from Macmillan Cancer Support has revealed.

According to research by YouGov for Missed Opportunities, three quarters (76%)ᶦᵛ of people with cancer have thought about the fact that they may die from their disease. However, in-depth conversations with health and social care professionals and people with cancer reveal there are a number of barriers preventing honest conversations about dying from taking place.

Health and social care professionals report that one of the biggest barriers to introducing conversations about dying is the pressure to stay positive and support people to ‘fight’ cancer, even when they have received a terminal diagnosisᵛ.

In fact, of those people surveyed who had spoken to their healthcare team about dying, only 19%ᵛᶦ of conversations were initiated by a health or social care professional.

A quarter of people with cancer (25%)ᵛᶦᶦ also admitted to not sharing their own thoughts about death and dying with anyone due to seeing themselves as a ‘fighter’. More than one in four (28%)ᵛᶦᶦᶦ find it difficult to talk honestly about their feelings around cancer, and a similar amount (28%)ᶦˣ feel guilty if they cannot stay positive about their disease.

For many, this gulf in communication means vital conversations — particularly about end of life preferences and wishes for things such as where they would like to die — are not had until it is too late. This means thousands of people with cancer are unnecessarily dying in hospitalˣ against their wishes.

It is a commonly held belief that describing people with cancer as ‘fighters’, keeps a person’s spirits high and instils in them a sense that the professionals supporting them are helping them to ‘fight the battle’.

Although some may find this language helpful, Missed Opportunities highlights the challenging contradiction of this fighting talk for people at the end of their lives.

Salina Bowen’s mother died of cancer in 2010. The 50-year old from Yorkshire said:

“Mum had been unwell for some time and had gone from being a sprightly 71-year-old to someone who had no energy and had trouble eating. It took a year of GP and hospital visits before finally we found out it was cancer.
“It felt like there was a lot of pressure to keep her going and to fight on, even though she clearly had advanced cancer. She was started on chemotherapy but after one session it proved too much.
“Mum died in hospital waiting for further tests. It has really shaped my feelings about the importance of talking about how I want to die.”

Macmillan wants to encourage and support health and social care professionals to facilitate more open and honest conversations about end of life using a process known as ‘Advance Care Planning’ˣᶦ.

This allows people to discuss their individual worries, values and preferences for their care and can significantly improve people’s experiences of care at end of life.

Adrienne Betteley, Specialist Advisor for End of Life Care, at Macmillan Cancer Support says:

“We know that ‘battling’ against cancer can help some people remain upbeat about their disease, but for others the effort of keeping up a brave face is exhausting and unhelpful in the long-term. We need to let people define their own experiences without using language that might create a barrier to vital conversations about dying.
“For health and social care professionals, there is often a fear that the person is not ready to talk about dying. We know, however, that making plans while receiving treatment allows people with cancer to retain a sense of control during an emotionally turbulent time.
“Future planning before a person’s health deteriorates is also strongly associated with lower hospital death rates. When staff have a record of where someone would like to die, that person is almost twice as likely to die in the place of their choosingˣᶦᶦ as well as have other care preferences met and fewer emergency admissions at the end of their life.”

Macmillan Cancer Support is urging Governments across the UK to honour their commitments to ensuring Advance Care Planning is used as an important part of a person — centred health service, so that people approaching the end of their lives receive the best care possible and their wishes for death and dying are fulfilled.

To read Missed Opportunities please click here.

-Ends-

Notes to editors

There are 2.5 million people living with cancer in the UK. One in two people are likely to get cancer in their lifetimes. Cancer can affect everything, including a person’s body, relationships and finances.

Macmillan Cancer Support provides practical, emotional and personal support to people affected by cancer every year. The charity is there to support people during treatment, help with work and money worries, and listen when people need to talk about their feelings.

Macmillan receives no government funding and relies on generous donations from the public. People up and down the country show their support for Macmillan — from hosting or attending a World’s Biggest Coffee Morning to running a marathon or giving up alcohol — so the charity can help more and more people affected by cancer every year. Life with cancer is still your life and Macmillan is there to help you live it.


References

ᶦ Unless otherwise stated, reported statistics are taken from Macmillan commissioned YouGov Plc. to survey UK adults with a cancer diagnosis. Total sample size was 2005 people with a previous cancer diagnosis, from which we have used the responses of the 1878 people that 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.

Respondents were asked: “To what extent do you agree that these statements apply to your feelings about your experience of cancer? — I sometimes find it hard to be honest about how I feel about cancer?”

ᶦᶦ 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)
Place of death for cancer, Scotland (accessed March 2018). 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.

ᶦᶦᶦ Macmillan Cancer Support, No regrets: how talking more openly about death could help people to die well, April 2017.

ᶦᵛ 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%).

ᵛ Findings from qualitative research involving visits by to five sites across the UK including England, Wales, Scotland, and Northern Ireland. During these visits researchers observed and interviewed professionals in different health and social care setting such as hospices, oncology units and support groups.

ᵛᶦ Yougov Plc (2017 as above). Respondents were asked, ‘You said you shared your thoughts or feelings about death or dying with your healthcare team. Could you tell us who started the conversation?’

ᵛᶦᶦ YouGov Plc. (2017). Respondents 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?’

ᵛᶦᶦᶦ Yougov Plc (2017 as above) figures taken from questions asked of whole sample of 2005 adults. Respondents were asked, ‘To what extent do you agree that these statements apply to your feelings about your experience of cancer? I sometimes find it hard to be honest about how I feel about cancer?’

ᶦˣ YouGov Plc. (2017 as above) figures taken from questions asked of whole sample of 2005 adults. Respondents were asked, ‘To what extent do you agree that these statements apply to your feelings about your experience of cancer? I feel guilty if I am not able to stay positive about my cancer?’

ˣ YouGov Plc. (2017). figures taken from section on death and dying which 1878 people answered. 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?’ 64% responded that they would like to die at home with palliative care support”.

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)
Place of death for cancer, Scotland (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.

ˣᶦ Advance Care Planning is also known as Anticipatory Care Planning in Scotland.

ˣᶦᶦ Macmillan analysis of Office for National Statistics, NHS England. (2015). National Survey of Bereaved People, 2014.