Experiences and perceptions of affected individuals, families, caregivers and healthcare professionals regarding end-of-life planning in Huntington's disease: A narrative synthesis.

Abstract

IntroductionPeople with Huntington's disease (HD) are encouraged to consider end-of-life planning early on to mitigate future challenges. Initial evidence shows that undertaking planning discussions around this subject presents various barriers; however, a comprehensive evidence synthesis has not been completed to date. Accordingly, we here synthesise evidence regarding experiences of end-of-life planning discussions (EOLPD) among people with HD, their families and familial caregivers, and healthcare professionals supporting them.MethodsFive databases were systematically searched for peer-reviewed articles addressing the research question. After screening, eight articles meeting the inclusion criteria were identified, and a narrative synthesis undertaken to develop key themes.ResultsFour themes were developed. "The value of EOLPD" details the perceived effectiveness of such discussions. "To talk or not to talk" reflect motivations to seek out or avoid EOLPD. "A clear vision of the future" encapsulates how EOLPD may provide comfort for some but fear and anxiety for others. The final theme highlights the importance of those engaging in EOLPD accessing "The right people at the right time".DiscussionEnd-of-life planning in HD remains inconsistently implemented and often process-focused, with a need for more holistic and patient-centred discussions. Further research is necessary to explore needs, expectations and experiences among HD families, and to support healthcare professionals to successfully lead on introducing these discussions. Additionally, much of the literature addressed euthanasia rather than natural death, highlighting a need for more research in the context of natural death.