How family caregivers' medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study
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|
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
|Through your library||Configure|
Similar books and articles
Gastone G. Celesia (1997). Persistent Vegetative State: Clinical and Ethical Issues. Theoretical Medicine and Bioethics 18 (3).
Greg Clarke, Robert T. Hall & Greg Rosencrance (2004). Physician-Patient Relations: No More Models. American Journal of Bioethics 4 (2):16 – 19.
Roy Gilbar & Ora Gilbar (2009). The Medical Decision-Making Process and the Family: The Case of Breast Cancer Patients and Their Husbands. Bioethics 23 (3):183-192.
Catherine Rodrigue, Richard J. Riopelle, James L. Bernat & Eric Racine (2013). Perspectives and Experience of Healthcare Professionals on Diagnosis, Prognosis, and End-of-Life Decision Making in Patients with Disorders of Consciousness. Neuroethics 6 (1):25-36.
Arthur R. Derse (1999). Making Decisions About Life-Sustaining Medical Treatment in Patients with Dementia. Theoretical Medicine and Bioethics 20 (1):55-67.
Joseph G. P. Paolillo & Scott J. Vitell (2002). An Empirical Investigation of the Influence of Selected Personal, Organizational and Moral Intensity Factors on Ethical Decision Making. Journal of Business Ethics 35 (1):65 - 74.
J. Schildmann, M. Grunke, J. R. Kalden & J. Vollmann (2008). Information and Participation in Decision-Making About Treatment: A Qualitative Study of the Perceptions and Preferences of Patients with Rheumatoid Arthritis. Journal of Medical Ethics 34 (11):775-779.
Nicholas Shea & Tim Bayne (2010). The Vegetative State and the Science of Consciousness. British Journal for the Philosophy of Science 61 (3):459.
Alan Schwartz (2008). Medical Decision Making: A Physician's Guide. Cambridge University Press.
Neil Levy & Julian Savulescu (2009). Moral Significance of Phenomenal Consciousness. Progress in Brain Research.
Donnie J. Self (1983). A Study of the Foundations of Ethical Decision-Making of Physicians. Theoretical Medicine and Bioethics 4 (1).
Jukka Varelius (2013). Pascal's Wager and Deciding About the Life-Sustaining Treatment of Patients in Persistent Vegetative State. Neuroethics 6 (2):277-285.
Isabella Paoletti (2001). Membership Categories and Time Appraisal in Interviews with Family Caregivers of Disabled Elderly. Human Studies 24 (4):293-325.
Elke U. Weber & Jessica S. Ancker (2005). Towards a Taxonomy of Modes of Moral Decision-Making. Behavioral and Brain Sciences 28 (4):563-564.
Ho Mun Chan (2004). Informed Consent Hong Kong Style: An Instance of Moderate Familism. Journal of Medicine and Philosophy 29 (2):195 – 206.
Sorry, there are not enough data points to plot this chart.
Added to index2012-02-29
Total downloads2 ( #245,680 of 722,745 )
Recent downloads (6 months)0
How can I increase my downloads?