A plea for end-of-life discussions with patients suffering from Huntington's disease: the role of the physician.

Euthanasia and physician-assisted suicide (PAS) by request and/or based on an advance directive are legal in The Netherlands under strict conditions, thus providing options for patients with Huntington's disease (HD) and other neurodegenerative diseases to stay in control and choose their end of life. HD is an inherited progressive disease characterised by chorea and hypokinesia, psychiatric symptoms and dementia. From a qualitative study based on interviews with 15 physicians experienced in treating HD, several ethical issues emerged. Consideration of these aspects leads to a discussion about the professional role of a physician in relation to the personal autonomy of a patient. Such a discussion can raise awareness that talking about end-of-life wishes with an HD patient is part of the legal, professional and moral responsibility of the physician, and that a letter of intent on behalf of the physician can improve active participation in the process. Discussion of these issues can help to advance the debate on euthanasia and PAS in HD and other neurodegenerative diseases.

Euthanasia and advance directives in Huntington's disease: qualitative analysis of interviews with patients.

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.