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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.

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    Abstract

    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
    Creators/Authors:
    CreatorsEmailORCID
    Pope, Sarah M.Sarah.M.Pope@gmail.com
    ETD Committee:
    ETD Committee TypeCommittee MemberEmailORCID
    Committee ChairMeisel, Alanmeisel@pitt.edu
    Committee MemberChaitin, Elizabethchaitinek@msx.upmc.edu
    Committee MemberFlannery, Jamesflannery@law.pitt.edu
    Title: Personal Assistants and Collaborative Decision Making: Promoting a Better Balance of Autonomy and Well-Being for Adults with Moderate, Mild, and Borderline Mental Retardation
    Status: Unpublished
    Abstract: 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.
    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; The work is available for access worldwide immediately.
    Patent pending: No
    Institution: University of Pittsburgh
    Thesis Type: Master's Thesis
    Refereed: Yes
    Degree: MA - Master of Arts
    URN: etd-04272007-032217
    Uncontrolled Keywords: Cognitive Disability; Ethics; Independence; Intellectual Disability; Interests; Self Determination; Shared Decision Making; Values
    Schools and Programs: Dietrich School of Arts and Sciences > Bioethics
    Date Deposited: 10 Nov 2011 14:42
    Last Modified: 05 Jun 2012 14:36
    Other ID: http://etd.library.pitt.edu/ETD/available/etd-04272007-032217/, etd-04272007-032217

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