Affiliations: Leiden University Medical Centre (LUMC), Department of Neurology, Leiden, The Netherlands | Department of Medical Ethics and Health Law, LUMC | Centre for Human and Clinical Genetics, LUMC
Note:  Correspondence to: Suzanne J. Booij, MD LLM, LUMC, Department of Neurology, PO Box 9600, 2300 RC Leiden, The Netherlands. Tel.: +31 71 526 2197; Fax: +31 71 524 8253; E-mail: [email protected]
Abstract: Background: In the literature there are few reports on euthanasia or physician-assisted suicide (PAS) or other matters concerning the end-of-life in patients with Huntington's disease (HD), although clinical experience suggests these issues do arise. Objective: To obtain in-depth information about patients' thoughts on and attitudes to euthanasia, PAS and the use of advance directives in HD. To assess the difficulties patients encounter when thinking about end-of-life wishes. Methods: Semi-structured in-depth interviews with 14 unselected HD patients from our out-patient clinic based on a topic list. Qualitative analysis of the interviews based on grounded theory. Results: We identified three patterns in our group of respondents: patients with distinct wishes, with general wishes and ideas and patients with no wishes. The most important frame of reference regarding end-of-life wishes in HD patients or known gene carriers is the experience with an affected parent. Family is important when thinking about the end of life and advance directives, even more so than the patient's physician. Knowledge about the (requirements of) law is limited. Conclusions: The majority of interviewees expressed some kind of wish regarding end of life, probably more than they had revealed to their physician, but were sometimes hesitant to discuss it. Knowledge on how to deal with wishes, advance directives and response shift is limited. In general, patients underestimate the requirement for sound professional support when considering euthanasia or PAS and the value of an advance directive. In an attempt to improve knowledge and communication about end-of-life issues, physicians should ask the patient directly about their wishes.