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How family caregivers' medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study
  1. Katja Kuehlmeyer1,
  2. Gian Domenico Borasio2,
  3. 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

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.

  • Neuroethics
  • psychology
  • clinical ethics
  • care of the dying patient
  • definition/determination of death

This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and http://creativecommons.org/licenses/by-nc/2.0/legalcode.

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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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