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%) have difficulty talking honestly about their feelings around cancer
- Gulf in communication means thousands of people with cancer unnecessarily die in hospital against their wishes
- Advance Care Planning, discussing end of life wishes, can significantly improve end of life experiences
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%) 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 diagnosis.
In fact, of those people surveyed who had spoken to their healthcare team about dying, only 19% of conversations were initiated by a health or social care professional.
A quarter of people with cancer (25%) 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%) find it difficult to talk honestly about their feelings around cancer, and a similar amount (28%) 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 hospital 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’.
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 choosing 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.