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

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Serval ID
serval:BIB_0D43AC8BE924
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
How family caregivers' medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study.
Journal
Journal of Medical Ethics
Author(s)
Kuehlmeyer K., Borasio G.D., Jox R.J.
ISSN
1473-4257 (Electronic)
ISSN-L
0306-6800
Publication state
Published
Issued date
2012
Volume
38
Number
6
Pages
332-337
Language
english
Notes
Publication types: Journal ArticlePublication Status: ppublish
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.
Pubmed
Web of science
Open Access
Yes
Create date
14/06/2012 17:19
Last modification date
20/08/2019 12:34
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