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Issues in Palliative Care Research$
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Russell K. Portenoy and Eduardo Bruera

Print publication date: 2003

Print ISBN-13: 9780195130652

Published to Oxford Scholarship Online: November 2011

DOI: 10.1093/acprof:oso/9780195130652.001.0001

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Assessing Decision-Making Capacity in the Setting of Palliative Care Research

Assessing Decision-Making Capacity in the Setting of Palliative Care Research

(p.243) 16 Assessing Decision-Making Capacity in the Setting of Palliative Care Research
Issues in Palliative Care Research

Russell K. Portenoy

Eduardo Bruera

Oxford University Press

This chapter begins with a discussion of why concerns about informed consent are warranted in palliative medicine research and why procedures for informed consent should be considered a key methodological challenge. Next, it discusses procedures for assessing decision-making capacity, followed by an outline of provisions that can be made for patients who lack capacity. The chapter concludes with recommendations to guide the judicious use of these procedures in the design of palliative care studies. The goals of good end-of-life care are to relieve suffering and to improve quality of life. However, access to palliative care is poor, and standards to guide palliative care have not been clearly established. At least in part, these deficiencies exist because of a lack of solid evidence on which to base clinical decisions. Therefore, there is an urgent need for a standard of care and increased access to quality care.

Keywords:   informed consent, palliative medicine, quality care, end-of-life care, decision-making capacity

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