‘Thinking ahead’: Advance Care Planning

Healthwatch Norfolk wanted to understand people's attitudes to planning for end of life care. They  surveyed members of the public and conducted a number of focus group sessions with under-represented groups. They received 1613 responses to the survey and 69 local people took part in focus groups.

Most people surveyed said they were comfortable talking about death (74%) and most people said they want care to focus on quality of life and being comfortable, even if it means they have a shorter life (72%). Focus groups with black and minority ethnic communities also supported findings from the survey, that people less comfortable talking about death are more likely to express a preference for longevity over quality of life. Whatever their preferences, nearly half of respondents (46%) had not discussed their end of life wishes with anyone else, including their friends and family.

Healthwatch also found that even when people make a Will, it is very rare for them to go on to arrange either a Power of Attorney for Health and Wellbeing (11%) or to complete an Advance Decision to Refuse Treatment – a ‘Living Will’ (5%).

People in Norfolk said that there are two major prompts to Advance Care Planning, being given a prognosis of a life-limiting illness (51%) and the fear of losing capacity through dementia (62%). A significant proportion of people surveyed felt it was ‘difficult to know if their wishes would be respected’ (44%) and a further 42% expressed a preference for discussing wishes informally rather than writing them down. Significantly, 29% worried that if they wrote down their wishes, doctors would stop treatment too soon. 

Focus group sessions indicated that people with disabilities or longterm conditions were perhaps less likely to engage in ACP, whilst parents of people with learning disabilities appeared the most likely to plan ahead. Local LGBT people also shared concerns in focus groups that their partners would not be recognised as next of kin. 

Professionals working with homeless people described the challenges of ACP for vulnerable patients with mental health problems. They also found that whilst end of life care in local prisons was likely to be very good in the dedicated elderly care unit, the processes for ACP were not consistent.