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IIR 02-224 – HSR Study

IIR 02-224
A Culturally Sensitive Values-Guided Aid for End of Life Decision-Making
Ursula K. Braun, MD MPH
Michael E. DeBakey VA Medical Center, Houston, TX
Houston, TX
Funding Period: April 2004 - September 2009
End-of-life decision-making is an important aspect of providing quality healthcare, especially for the elderly population. Increasingly, the appropriateness of many of these decisions is being questioned. The explicit identification of values that guide medical decision-making could improve the decision-making process for end-of-life care for patients of all races/ethnicities.

Phase I: 1) To directly compare, critically assess, and revise two Values Histories on the basis of qualitative data derived from individual interviews with racially/ethnically diverse patients and surrogates, and explore patients', surrogates', and physicians' values, preferences and concerns that guide decision-making about medical interventions at the end-of-life. 2) To then adapt the existing Values Histories into a clinically practical tool, the Values Inventory discussion aid.
Phase II: 3) To conduct preliminary testing of this tool to be used in physician-patient or physician-surrogate encounters to improve and facilitate decisions about end-of-life care.

Cross-sectional qualitative study using individual interviews with racially-ethnically diverse seriously ill patients and surrogates, and focus group interviews with physicians. Seriously ill eligible patients were at risk for 6-12- month mortality. All (patient) participants age 55 years or older were recruited through the clinics/wards at the Houston VAMC. Surrogates were surrogates of patients with such conditions; physicians were generalists and medical subspecialists. To achieve objective 3, a small randomized trial to test the feasibility of using the developed Values Inventory discussion aid in clinical practice was done.

33 surrogates and 38 patients completed structured interviews; 26 physicians completed focus group interviews. Regardless of race/ethnicity, surrogates for seriously ill patients appeared to experience increased significant, multidimensional burdens of decision making under conditions of uncertainty about a patient's preferences, which may not be fully appreciated by physicians. Physicians should be especially attentive to strategies used by surrogates, which may vary by race/ethnicity, to reduce the uncertainty about a patient's preferences and thus the burden of surrogate decision making. Among patients, depending on their decision making style and their communication with potential surrogates, several pathways seemed to lead to life-sustaining treatments by default. By recognizing these pathways, physicians could potentially prevent such default treatments.
The Values Inventory discussion aid was revised and refined and a more culturally sensitive instrument was presented to participants in Phase II.
Ten generalists and ten subspecialists were enrolled for phase II, together with 128 of their patients (64 in the 'usual care' group, 64 in the 'values inventory' group). The Values Inventory was well accepted by patients, but did not increase discussions with physicians significantly. Even though many have promoted primary care settings as ideal setting for end-of-life care planning, we found this setting inadequate to achieve this goal. However, the tool facilitated and increased patients' conversations with potential surrogates about end-of-life care.

This project explicitly identified values that guide the decision-making process for end-of-life care with particular emphasis on the role of ethnic, racial and cultural factors. The study resulted in several publications, making strong contributions to the literature on surrogate decision making and the physician's role in assisting surrogates make end-of-life decisions for others. We also identified pathways for patients that can potentially result in receiving life-sustaining treatments by default, and we propose preventive strategies to avoid such default treatment. Future research will examine interventions specifically designed to interrupt pathways to life-sustaining treatments by default.

External Links for this Project

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None at this time.

DRA: Aging, Older Veterans' Health and Care, Health Systems
DRE: none
Keywords: Decision support, End-of-life, Minority
MeSH Terms: none

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