The perceived need to “fight” cancer and remain positive is having a negative effect on people living with the disease, especially those with a terminal diagnosis who are not getting the right support for the end of life, a charity has said.
Research by YouGov found that three-quarters (76%) of people with cancer said they had thought about the fact they may die from the disease. But Macmillan Cancer Support said its research showed there were a number of barriers preventing honest conversations about dying from taking place.
It said one of the biggest barriers to introducing conversations about dying was the pressure to stay positive, even when patients received a terminal diagnosis.
Of the people surveyed who had spoken to their healthcare team about dying, only 19% said the conversations were initiated by a health or social care professional.
Furthermore, a quarter of people with cancer said they had not shared their thoughts about death and dying with anyone due to the pressure to see themselves as a “fighter”.
More than one in four (28%) said they found it difficult to talk honestly about their feelings around the disease, and a similar number (28%) said they felt guilty if they could not remain positive.
Macmillan said this gulf in communication meant many cancer patients were not having vital conversations about end-of-life preferences until it was too late, and thousands of people were unnecessarily dying in hospital against their wishes.
The charity highlighted the case of Salina Bowen’s mother, who died of cancer in 2010. Bowen, 50, from Yorkshire, said her mother had been unwell for some time and had gone from being a sprightly 71-year-old to having no energy and having trouble eating.
It took a year of GP and hospital visits before a cancer diagnosis was given. “It felt like there was a lot of pressure to keep her going and to fight on, even though she clearly had advanced cancer,” Bowen said.
“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.”
Adrienne Betteley, a specialist adviser on end-of-life care at Macmillan Cancer Support, said: “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.”
