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Background: Huntington's disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become lost as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). To improve ACP for HD patients, there is a need to better understand how these patients face their poor prognosis., Aim: To gain insight into the views of HD patients who receive outpatient care regarding their future and the way they deal with the poor prognosis of their disease., Methods: A qualitative study using semi-structured interviews with 12 patients with HD (7 outpatient clinic, 3 day care, 2 assisted living facility). Audio-recorded interviews were transcribed verbatim. Through reading and re-reading interviews, writing memos and discussions in the research team, strategies were identified., Results: Three strategies emerged for facing a future with HD. Participants saw the future: 1) as a period that you have to prepare for; 2) as a period that you would rather not think about; 3) as a period that you do not have to worry about yet. Participants could adopt more than one strategy at a time. Even though participants realized that they would deteriorate and would need more care in the future, they tried to keep this knowledge 'at a distance', with the motivation of keeping daily life as manageable as possible., Conclusions: Official ACP guidelines recommend discussing goals and preferences for future treatment and care, but patients tend to want to live in the present. Further research is needed to elucidate the best approach to deal with this discrepancy.

Background: Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. This study aims to get insight in the range of underlying goals that comprise the legitimacy of ACP., Methods: Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library. Articles on normative aspects of ACP were included, based on title and abstract. Due to the quantity of inclusions, of which many had similar content, purposive sampling was used to select articles for full text document analysis. Analysis stopped once saturation was reached., Results: In total, 6497 unique articles were found of which 183 were included. Saturation was reached after document analysis of 55 articles (30%); this yielded 141 codes concerning goals of ACP and also 70 codes about objections against ACP, which shed light on the underlying goals of ACP as well. We identified five underlying goals: respecting individual patient autonomy, improving quality of care, strengthening relationships, preparing for end-of-life, reducing overtreatment., Conclusions: Five distinctive underlying goals of ACP were identified, each with corresponding objections that need to be considered. Specifying underlying goals of ACP may direct the debate on definitions, methods and preferred outcomes of ACP. This study was funded by the Netherlands Organisation for Health Research and Development, grant 839120002.