A study published last week in Palliative Medicine shows that although the majority of people in Europe want to be involved in decision making around their care, a sizeable proportion prefer to have no involvement in advance decision making.
Researchers on behalf of PRISMA, asked 9344 adults in England, Belgium, Germany, Italy, The Netherlands, Portugal and Spain about whether they would want to be involved in decision making about their care at the end of life.
Across countries, 74% of people said that they would want to be involved in decision making. However, only 44% said that they would still want to be involved in making decisions about their care when they lost capacity to do so, through, for example, a living will written in advance.
Dr Barbara Daveson, the lead author of the paper, said: “Our findings remind us of the importance of asking patients and families what they prefer and then proceed with their wishes.”
The researchers have made three policy recommendations, based on their findings:
- Family representatives (spouses, partners and other relatives) should be consulted before adopting advance directive legislation.
- Funds should be allocated for research into the factors involved in decision-making at the end of life, to help safeguard against potential inequities.
- Public education campaigns should raise awareness of the option of choosing to not be involved in decision-making at the end of life, and prepare families for future surrogate decision-making.
‘To be involved or not to be involved: a survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe’, by B Daveson et al was published by Palliative Medicine online on 20 February 2012.
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