Gaining insight into the views of outpatients with Huntington’s disease regarding their future and the way they deal with their poor prognosis: a qualitative study

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

Association Between Subjective Remaining Life Expectancy and Advance Care Planning in Older Adults:A Cross-Sectional Study

Context: Advance care planning (ACP) becomes more relevant with deteriorating health or increasing age. People might be more inclined to engage in ACP as they feel that they are approaching end of life. The perception of approaching end of life could be quantified as subjective remaining life expectancy (SRLE). Objectives: First, to describe the prevalence of ACP with health care providers or written directives (“formal engagement in ACP”) and ACP with loved-ones (“informal engagement in ACP”) among older persons in the general population in The Netherlands. Second, to assess the association between SRLE and engagement in ACP. Methods: Cross-sectional study using data from the Longitudinal Aging Study Amsterdam (LASA) measurement wave of 2015–2016. Participants (n = 1585) were aged ≥ 57 years. Results: Median age was 69.4 years (IQR: 64.1–76.7), and median SRLE 25.9 years (17.7–36.0). Formal engagement in ACP was present in 32.6%, informal without formal engagement in 45.8%, and 21.6% was not engaged in ACP. For respondents with SRLE < 25 years, there was a nonstatistically significant association between SRLE and engagement in ACP (aOR: 0.97; 95% CI: 0.93–1.01; P= .088), and a statistically significant, small association with formal vs. informal engagement in ACP (aOR: 0.96; 0.93–0.99; P= .009). For respondents with SRLE ≥ 25 years there was no association between SRLE and engagement in ACP. Conclusion: The perception of approaching end of life is associated with higher prevalence of formal engagement in ACP, but only for those with SRLE < 25 years. For clinicians, asking patients after their SRLE might serve as a starting point to explore readiness for ACP