Vital conversations about cancer patients’ end of life wishes are often not had until it is too late, according to a new report.
Almost two thirds of patients (63%) who took part in a Macmillan Cancer Support study saw themselves as “fighters”.
However, the charity said this could result in many patients not discussing end of life plans as they tried to remain positive.
It wants more research done into how end of life care can be improved.
The study found that maintaining a “fighting attitude” could have a negative effect on terminal cancer patients’ end of life experience.
One in four (25%) patients surveyed said they felt guilty if they could not stay positive about their disease while almost a quarter (23%) reported finding it difficult to talk honestly about their feelings around cancer.
We never think we are going to die
Paul Meisak, who lives in Cumbernauld in North Lanarkshire, is a terminal cancer patient. A year ago, at the age of 56, he was told he had a year to live.
“I should be dead now but I’m still alive and have created all these memories,” he told BBC Scotland.
“We never think we are going to die, but when you suddenly get it at 56, it’s a bit of a shock.”
But he said he and his wife Bridget have a motto – “live each day like its your last and just embrace life, make the best of it.”
“You have no idea how you are going to react until you are in that situation, but I was very fortunate when I was given the diagnosis, I accepted it,” he said.
He said rather than it being about “positivity” it is about “adaptability, adapting to your situation”.
“Everything has been planned, the funeral has been planned, we had to organise all the legal matters early on, and that’s when it is great when you’ve got someone to support you.
“I would say the biggest thing about being in a situation with a terminal illness is making sure you have your pain managed because pain brings you down.”
Paul said talking to people and “opening up” about his illness and prognosis is key.
“When I did that I found out how much everyone loved me and I loved them.
“It has made this journey, not a dark journey, but actually an illuminating journey.”
Macmillan Cancer Support warned the gulf in communication meant often vital conversations – particularly about patients’ end of life wishes – were not had until it was too late.
The report also suggested thousands of cancer patients were dying unnecessarily in hospital and may also have little to no plans in place for other care preferences such as pain management.
Trisha Hatt, strategic partnership manager at Macmillan Cancer Support, said: “Keeping up a fighting attitude can be exhausting in the long-term for those with a terminal cancer diagnosis. People must be able to define their own experiences without using language that might create a barrier to vital conversations about dying.
“For healthcare 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 that they may have felt that they had lost. This can be the pillar of strength in what is an emotionally turbulent time.”
The charity is now calling on the Scottish government to carry out the VOICES survey across Scotland so there is a greater understanding of who is receiving end of life care in Scotland, and what the quality of care is.
Ms Hatt added: “To fully understand how we can improve end of life care in Scotland we must firstly understand where we are now. Further delay to this survey results in terminal cancer patients not having a voice that they have a right to.”
‘Greater discourse around death and bereavement’
The study suggested about two-thirds (65%) of cancer patients have thought about the fact they may die from their disease.
When asked where they would prefer to spend their final days, only 1% said they would like to die in hospital.
More than two-thirds (69%) said they would prefer to die at home while 17% said in a hospice, 3% said in a care home and others said elsewhere or that they did not know.
However, in 2015 in Scotland, 43% of people who died from cancer died in a hospital (6,983 people) while 30% died at home, 19% died in a hospice and 8% died in a care home or elsewhere.
A Scottish government spokeswoman said: “We want to make sure people and their families receive the right end of life care and support.
“We have set out a number of commitments, including supporting greater public discourse around death and bereavement.
“We are also working with a wide range of stakeholders including Marie Curie to help provide a clearer picture of how we can continue to improve palliative and end of life care, including through bereaved carer feedback.”
Macmillan commissioned YouGov to carry out the UK-wide survey of 2,005 people.