Background When there is no advance care planning (ACP), relatives feel uncomfortable and ambivalent when deciding on behalf of someone who has lost decision-making capacity. The aim of this study was to understand proxies’ needs and gather experts’ views on how to improve ACP in Switzerland.
Methods We conducted 20 interviews with proxies and four with experts in the three linguistic regions of Switzerland.
Results Half of the proxies were not familiar with ACP and spoke about living wills, testaments, and financial and organizational challenges of daily care. Only four people had the opportunity to advance decisions about healthcare with their kin when s/he was diagnosed with a neurocognitive disease. Most interviewees became proxies by the circumstances and did not discuss their role further with the patient or other relatives. For most people, ACP was made difficult by caregivers not being explicit about disease progression and potential complications and proxies’ role in future decision-making. When patients were very sick but still competent, professionals tended to exclude proxies albeit decisions had huge impact not only on the patient but also on their families. Communication and coordination with professionals and money are major concerns for most interviewees, in particular parents of disabled children. Experts’ views are consistent with interviewees’ experiences.
Conclusions Recommendations to improve ACP in Switzerland include increasing awareness in both professionals and the public, improving communication and coordination between professionals, patients and their proxies, better supporting relatives in their most urgent needs, and broaching ACP when discussing ongoing care plans.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.