Journal of Medical Ethics 38 (6):332-337 (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
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DOI | 10.1136/medethics-2011-100373 |
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References found in this work BETA
The Minimally Conscious State: Definition and Diagnostic Criteria.Joseph T. Giacino & Childs N. Ashwal S. - 2002 - Neurology 58 (3):349-353.
Functional Neuroimaging and Withdrawal of Life-Sustaining Treatment From Vegetative Patients.D. J. Wilkinson, G. Kahane, M. Horne & J. Savulescu - 2009 - Journal of Medical Ethics 35 (8):508-511.
Clinical Ethics: Autonomy at the End of Life: Life-Prolonging Treatment in Nursing Homes—Relatives’ Role in the Decision-Making Process.A. Dreyer, R. Forde & P. Nortvedt - 2009 - Journal of Medical Ethics 35 (11):672-677.
Substitute Decision Making in Medicine: Comparative Analysis of the Ethico-Legal Discourse in England and Germany. [REVIEW]Ralf J. Jox, Sabine Michalowski, Jorn Lorenz & Jan Schildmann - 2008 - Medicine, Health Care and Philosophy 11 (2):153-163.
Bewusstlos, aber autonom?Unconscious, yet autonomous?Ralf J. Jox - 2004 - Ethik in der Medizin 16 (4):401-414.
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Citations of this work BETA
How Does Functional Neurodiagnostics Inform Surrogate Decision-Making for Patients with Disorders of Consciousness? A Qualitative Interview Study with Patients’ Next of Kin.Leah Schembs, Maria Ruhfass, Eric Racine, Ralf J. Jox, Andreas Bender, Martin Rosenfelder & Katja Kuehlmeyer - 2021 - Neuroethics 14 (3):327-346.
Conscientious of the Conscious: Interactive Capacity as a Threshold Marker for Consciousness.David B. Fischer & Robert D. Truog - 2013 - American Journal of Bioethics Neuroscience 4 (4):26-33.
Ethics of Neuroimaging After Serious Brain Injury.Charles Weijer, Andrew Peterson, Fiona Webster, Mackenzie Graham, Damian Cruse, Davinia Fernández-Espejo, Teneille Gofton, Laura E. Gonzalez-Lara, Andrea Lazosky, Lorina Naci, Loretta Norton, Kathy Speechley, Bryan Young & Adrian M. Owen - 2014 - BMC Medical Ethics 15 (1):41.
To Treat or Not to Treat a Newborn Child with Severe Brain Damage? A Cross-Sectional Study of Physicians’ and the General Population’s Perceptions of Intentions.Anders Rydvall, Niklas Juth, Mikael Sandlund, Magnus Domellöf & Niels Lynøe - 2014 - Medicine, Health Care and Philosophy 17 (1):81-88.
Nonconsensual Withdrawal of Nutrition and Hydration in Prolonged Disorders of Consciousness: Authoritarianism and Trustworthiness in Medicine.Mohamed Y. Rady & Joseph L. Verheijde - 2014 - Philosophy, Ethics, and Humanities in Medicine 9:16.
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