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

7. Experiences of care planning

• Members of the public asked about care planning related to death and dying thought it was most appropriate in relation to wills and funerals. People spoke about hoping for good pain management if they were dying but other aspects of care were too difficult to anticipate or control. However, lack of planning could cause conflicts within families.
• Limited public knowledge and information that was confusing or inaccessible meant many people thought that ‘advance’ care planning for when a person is not able to make decisions had little personal relevance and risked causing emotional distress. Lack of engagement was increased by fears, mistrust and misconceptions about the purpose and scope of care planning. A minority of people said they value maintaining autonomy by expressing their goals and preferences.
• People were ambivalent about confronting an uncertain and problematic future, opting to focus on being positive by keeping up familiar routines, doing everyday activities and prioritising relationships. Others expressed a fatalistic attitude and saw no point in planning. Feeling reasonably well was taken to mean ‘being well’ and far from dying.
• Maintaining personal autonomy did not make sense for individuals who preferred to share responsibility and decision making with people who were important to them.
• Preferences for treatment and care and place of care when the person was dying were variable and depended on an evolving illness and the capacity of family and carers to cope at home. The desire to avoid ‘being a burden’ was expressed strongly.
• Carers were more interested in care planning if it included their current needs and those of the person and extended family. Personal conversations were the best way to help people think and talk about planning. Worries about legal fees put people off planning.