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J Med Ethics 38:332-337 doi:10.1136/medethics-2011-100373
  • Clinical ethics
  • Paper

How family caregivers' medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study

Open AccessPress Release
  1. Ralf J Jox1
  1. 1Institute of Ethics, History and Theory of Medicine, University of Munich, Munich, Germany
  2. 2Centre Hospitalier Universitaire Vaudois (CHUV), Université de Lausanne, Lausanne, Switzerland
  1. Correspondence to Katja Kuehlmeyer, Institute of Ethics, History and Theory of Medicine, Ludwig-Maximilians-University Munich, Lessingstr. 2, Munich D-80336, Germany; katja.kuehlmeyer{at}med.lmu.de
  1. Contributors KK designed the interview grid, conducted the sampling, collected the largest part of the data, verified the interview transcripts, analysed the data, drafted and revised the paper. She is guarantor. RJJ initiated the project, revised the interview grid, participated in the data collection, revised the results, drafted and revised the paper. GDB supported the initiation of the project, revised the interview grid, revised the results and revised the paper.

  • Received 14 November 2011
  • Revised 11 January 2012
  • Accepted 16 January 2012
  • Published Online First 28 February 2012

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 and sample 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.

Footnotes

  • Funding The study was funded by the German Ministry of Education and Research.

  • Competing interests None.

  • Ethics approval Ethics approval was granted by the research ethics committee of the Medical Department of the University of Munich.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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