Palliative care strategy - lived experiences and public views: research studies - key findings summary

4. Knowledge and understanding about palliative care

• There is general awareness among members of the public of ‘hospice care’ and ‘palliative care’. Fewer people have heard of ‘specialist palliative care’. People have a much greater understanding of palliative care if they have experience of receiving it themselves, for relatives and friends, or through working in health or social care. Despite efforts to explain ‘palliative care’ and show it is much more than care of people who are dying, many members of the public still think the offer of palliative care means someone is near death.
• Around 69% of survey respondents in a 2021 UK poll were aware of the term palliative care; 68% hospice care, and 31% specialist palliative care.
• More people with cancer, heart failure or severe dementia had received palliative care so had greater insights than those with lung or kidney disease.
• People had variable ideas about the value of talking about death and dying, and the concept of a ‘good’ death. Talking about what happens in an abstract way is not the same as thinking about your own life and circumstances. Over time, there is a general shift towards more open discussion about these topics.

“I just think anything that can be done to destigmatise it as a conversation just eases the way, unlocks all those tensions and negativities about it and gets people talking. …”

• Barriers to discussion include ways of coping, fear of upsetting self or others; and general difficulties of talking about sensitive topics with people close to you or with staff.
• Older people with frailty put changes in health down to ageing and worried more about going into a care home or having dementia than about dying and knew little about palliative care.
• People living with multiple progressive conditions (multimorbidity) described themselves as ‘falling apart’, focused on coping with the challenges and uncertainties of daily life, and often associated palliative care with dying.

“Her death was totally unexpected. The GP did say to me, just after Christmas, she is on a knife edge…it could happen anytime. Well, I'd say, for the past year and a half.”