title: How family caregivers' medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study.
abstract: BACKGROUND
  Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes.
  
  
  OBJECTIVE
  To examine the role of advance directives, orally expressed wishes, or the presumed will of patients in a VS for family caregivers' decisions on life-sustaining treatment.
  
  
  METHODS
  A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis.
  
  
  RESULTS
  The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour.
  
  
  CONCLUSIONS
  Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning.
authors.affiliation: Institute of Ethics, History and Theory of Medicine, Ludwig-Maximilians-University Munich, Lessingstr. 2, Munich D-80336, Germany. katja.kuehlmeyer@med.lmu.de
authors.forename: Katja
authors.initials: K
authors.lastname: Kuehlmeyer
authors.forename: Gian Domenico
authors.initials: GD
authors.lastname: Borasio
authors.forename: Ralf J
authors.initials: RJ
authors.lastname: Jox
mesh_terms: D000328:Adult; D032722:Advance Care Planning / Q000941:ethics*; D016223:Advance Directives / Q000523:psychology*; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D005858:Germany; D006801:Humans; D008297:Male; D008875:Middle Aged; D018458:Persistent Vegetative State / Q000523:psychology*; D010817:Physician-Patient Relations; D036301:Qualitative Research