title: Euthanasia and advance directives in Huntington's disease: qualitative analysis of interviews with patients.
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.
authors: Leiden University Medical Centre (LUMC), Department of Neurology, Leiden, The Netherlands Department of Medical Ethics and Health Law, LUMC.
authors: Suzanne J
authors: SJ
authors: Booij
authors: Leiden University Medical Centre (LUMC), Department of Neurology, Leiden, The Netherlands.
authors: Verena
authors: V
authors: Rödig
authors: Department of Medical Ethics and Health Law, LUMC.
authors: Dick P
authors: DP
authors: Engberts
authors: Centre for Human and Clinical Genetics, LUMC.
authors: Aad
authors: A
authors: Tibben
authors: Leiden University Medical Centre (LUMC), Department of Neurology, Leiden, The Netherlands.
authors: Raymund A C
authors: RA
authors: Roos
mesh_terms: D000328:Adult; D016223:Advance Directives / Q000523:psychology*; D000368:Aged; D001293:Attitude to Death; D033101:Euthanasia, Active, Voluntary / Q000523:psychology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D006816:Huntington Disease / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010817:Physician-Patient Relations
keywords: Huntington's disease; advance directives; dementia; end-of-life wishes; euthanasia; neurodegenerative disease; physician-assisted suicide