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Why Doesn't a Family Member of a Person With Advanced Dementia Use a Substituted Judgment When Making a Decision for That Person?

From the School of Nursing, Division of Biobehavioral and Health Sciences (KBH), Department of Medicine, Division of Geriatrics (JMK, JHTK), Institute on Aging (KBH, JMK, JHTK), Alzheimer's Disease Center (JHTK), Leonard Davis Institute of Health Economics (JHTK), Center for Clinical Epidemiology and Biostatistics (JHTK), and the Center for Bioethics (JMKP, JHTK), University of Pennsylvania (KBH, JMK, JHTK), Philadelphia, PA.

Objective: The objective of this study was to identify what standard of decision making a family member uses when making medical decisions for their relative with advanced dementia.

Methods: Thirty family members of patients with advanced dementia from an Alzheimer disease center and a suburban long-term care facility were interviewed using a semistructured interview. All interviews were audiotaped, transcribed, and analyzed using qualitative data analysis techniques.

Results: Family members were split almost evenly in the standard they used when making medical decisions for their relative: substituted judgment (43%) or best interests (57%). However, few who used the substituted judgment standard viewed it as distinct from best interests. Instead, both standards were taken into consideration when making medical decisions. In addition to not having discussions about healthcare preferences, the reasons for not using a substituted judgment included: the need for family consensus, unrealistic expectations of the patient, the need to incorporate their relative's quality of life into the decision, and the influence of healthcare professionals. Family members who did not have discussions about healthcare preferences identified various barriers to the discussion, including waiting too long, avoiding the topic, and the patient's denial of dementia.

Conclusion: These data suggest several reasons why surrogate decision-makers for persons with advanced dementia do not use the substituted judgment standard and the potential value of interventions that would allow patients with early-stage dementia and their family members to discuss healthcare preferences.

Key Words: Substituted judgment • decision making • Alzheimer disease • caregiver

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