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Personal Assistants and Collaborative Decision Making: Promoting a Better Balance of Autonomy and Well-Being for Adults with Moderate, Mild, and Borderline Mental Retardation

Pope, Sarah M. (2007) Personal Assistants and Collaborative Decision Making: Promoting a Better Balance of Autonomy and Well-Being for Adults with Moderate, Mild, and Borderline Mental Retardation. Master's Thesis, University of Pittsburgh. (Unpublished)

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Autonomy is a core value of American tradition and is promoted in health care through the doctrine of informed consent. The notion underlying informed consent is that patients should have the right to decide, and are often in the best position to know, what will enhance their own well-being. Although this ethic has been extended to incompetent patients, by employing surrogate decision making, providing surrogate decision makers for adults with moderate, mild, and borderline mental retardation ("M-BMR"), who could potentially make their own decisions if adequate supports were offered, unreasonably restricts the autonomy of such individuals and often results in disregard for the patients' human dignity.This thesis recommends that health care institutions provide a personal assistant for all health care visits involving adults with M-BMR. In her role as an advocate for the patient, the personal assistant would offer a less restrictive means of promoting the patient's autonomy in medical decision making than has limited guardianship, thus furthering the goals of guardianship reform that limited guardianship has been unable to do. Serving as an educator and translator, the personal assistant would provide a means to equalize the patient's opportunity to understand the diagnosis, treatment options, and risks and benefits of those treatments. Alternatively, in cases where a surrogate decision maker is required, the personal assistant would aid in equalizing the patient's opportunity to understand what is happening during medical procedures by ensuring continued communication with the patient with M-BMR. Finally, having training in ethics, the personal assistant would foster a collaborative approach to medical decision making that recognizes the importance of incorporating both the physician's experience and knowledge and the family member or caregiver's unique understanding of the patient in the medical decision. Together, the personal assistant and the collaborative decision making approach will enhance discussion between the physician, patient, and family member or caregiver, thereby helping balance the autonomy and the well-being of the patient with M-BMR, while also ensuring that the patient's dignity is respected.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Pope, Sarah
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairMeisel, Alanmeisel@pitt.eduMEISEL
Committee MemberChaitin,
Committee MemberFlannery, Jamesflannery@law.pitt.eduJFLAN
Date: 20 June 2007
Date Type: Completion
Defense Date: 13 April 2007
Approval Date: 20 June 2007
Submission Date: 27 April 2007
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Institution: University of Pittsburgh
Schools and Programs: Dietrich School of Arts and Sciences > Bioethics
Degree: MA - Master of Arts
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: Cognitive Disability; Ethics; Independence; Intellectual Disability; Interests; Self Determination; Shared Decision Making; Values
Other ID:, etd-04272007-032217
Date Deposited: 10 Nov 2011 19:42
Last Modified: 19 Dec 2016 14:35


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