%0 Journal Article
%T The views of adults with Huntington¡¯s disease on assisted dying: A qualitative exploration
%A Fiona J R Eccles
%A Jane Simpson
%A Laurence Regan
%A Nancy J Preston
%J Palliative Medicine
%@ 1477-030X
%D 2018
%R 10.1177/0269216317741850
%X Assisted dying is frequently debated publicly and research often includes the views of health professionals on this issue. However, the views of people with life-limiting conditions, for whom this issue is likely to have a different resonance, are less well represented. The purpose of this study was to explore the views of people who live with the inevitability of developing Huntington¡¯s disease, a genetically transmitted disease which significantly limits life, on assisted dying. Using thematic analysis methodology, individual semi-structured interviews were conducted. Seven participants (five women and two men) who were gene positive for Huntington¡¯s disease took part in the study. Four themes were extracted: (1) autonomy and kindness in assisted dying: the importance of moral principles; (2) Huntington¡¯s disease threatens life and emphasises issues relating to death; (3) dilemmas in decision-making on assisted dying: ¡°There are no winners¡± and (4) the absence of explicit discussion on dying and Huntington¡¯s disease: ¡°Elephants in the room¡±. Our findings suggest that talking to patients about assisted death may not cause harm and may even be invited by many patients with Huntington¡¯s disease. The perspectives of those who live with Huntington¡¯s disease, especially given its extended effects within families, add significant clinical and theoretical insights
%K Huntington disease
%K suicide
%K euthanasia
%K neurodegenerative diseases
%K qualitative research
%U https://journals.sagepub.com/doi/full/10.1177/0269216317741850