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  1. How family caregivers' medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study.Katja Kuehlmeyer, Gian Domenico Borasio & Ralf J. Jox - 2012 - Journal of Medical Ethics 38 (6):332-337.
    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 (...)
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  • 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.
    Background: The increasing number of elderly people in nursing homes with failing competence to give consent represents a great challenge to healthcare staff’s protection of patient autonomy in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation. The lack of national guidelines and internal routines can threaten the protection of patient autonomy. Objectives: To place focus on protecting patient autonomy in the decision-making process by studying how relatives experience their role as substitute decision-makers. Design: A qualitative descriptive design with analysis (...)
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  • "He got his last wishes": ways of knowing a loved one's end-of-life preferences and whether those preferences were honored.A. R. Wittich, B. R. Williams, F. A. Bailey, L. L. Woodby & K. L. Burgio - 2013 - Journal of Clinical Ethics 24 (2):113-124.
    As a patient approaches death, family members often are asked about their loved one’s preferences regarding treatment at the end of life. Advance care directives may provide information for families and surrogate decision makers; however, less than one-third of Americans have completed such documents. As the U.S. population continues to age, many surrogate decision makers likely will rely on other means to discern or interpret a loved one’s preferences. While many surrogates indicate that they have some knowledge of their loved (...)
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  • Responsive Care Management: Family Decision Makers in Advanced Cancer.Mary Ann Meeker - 2011 - Journal of Clinical Ethics 22 (2):107-122.
    The purpose of this prospective study was to develop a grounded theory explaining the process that family decision makers use to make care decisions with or for a family member with advanced cancer. Adult surrogate decision makers were recruited for multiple interviews over the patient’s care trajectory: 40 surrogates provided 80 semi-structured interviews. Analysis of these narratives revealed a process of responsive care management that is inclusive of, but not limited to, decision-making roles. Monitoring, buffering, and taking over comprise the (...)
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