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Validation of Preferences for Life-Sustaining Treatment: Implications for Advance Care Planning

Donald L. Patrick, PhD, MSPH; Robert A. Pearlman, MD, MPH; Helene E. Starks, MPH; Kevin C. Cain, PhD; William G. Cole, PhD; and Richard F. Uhlmann, MD, MPH
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From the University of Washington and Veterans Affairs Puget Sound Health Care System, Seattle, Washington. Acknowledgments: The authors thank Jeremy Sugarman, Bruce Psaty, and J. Randall Curtis for their helpful comments on earlier drafts of this manuscript. Grant Support: In part by grant HS06343 from the Agency for Health Care Policy and Research, Department of Health and Human Services. Requests for Reprints: Donald L. Patrick. PhD, MSPH, Department of Health Services, Box 357660, University of Washington, Seattle, WA 98195-7660. Current Author Addresses: Dr. Patrick: Department of Health Services, Box 357660, University of Washington, Seattle, WA 98195-7660.

Copyright ©2004 by the American College of Physicians

Ann Intern Med. 1997;127(7):509-517. doi:10.7326/0003-4819-127-7-199710010-00002
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Background: Treatment preferences established before life-threatening illness occurs may differ from actual decisions because of changes in preferences or poor understanding of the link between prospective preferences and outcomes.

Objective: To evaluate the validity of prospective treatment preferences by examining their concordance with ratings of health states.

Design: Survey of seven cohorts of persons with diverse health status. Home- and hospital-based interviews were conducted at baseline and at 6, 18, and 30 months.

Setting: The greater Seattle area.

Participants: Younger and older well adults; persons with chronic conditions, terminal cancer, or AIDS; stroke survivors; and nursing home residents.

Measurements: Concordance between six treatment preferences and five health state ratings (on a seven-point scale) was assessed by using logistic regression to measure the increase in odds of treatment refusal for each one-point change in health state ratings. Preferences were considered concordant if treatments were refused in health states rated as worse than death and were accepted in health states rated as better than death. Reasons for discordance were elicited at the final interview.

Results: The probability of refusal of prospective treatment was strongly related to health state ratings. Odds ratios ranged from 1.7 to 1.9 (P < 0.001) for every treatment. When patients were shown their discordant preferences, they had a coherent explanation or changed their health state rating or treatment preference to make the two concordant.

Conclusions: Prospective life-sustaining treatment preferences show high convergent validity. For most persons, treatment preferences are grounded in a consistent belief system. Concordance and discordance between treatment preferences and health state ratings offer clinicians the opportunity to explore patients' values and reasoning.


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Figure 1.
Model for exploring the validity of treatment preferences.

Preferences are concordant when patients refuse treatments in health states considered worse than death and accept treatment in health states considered better than death (A and D). Discordant preferences (B and C) should be discussed to clarify misunderstanding or explore patient values.

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Figure 2.
Sample of the visual aid used to elicit treatment preferences.
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Figure 3.
Relation between treatment preference and rating of health state.P

For each treatment, ratings for all five health states were combined. White indicates participants who accepted treatment; diagonal shading indicates participants who were unsure whether to accept or reject treatment; and black indicates participants who rejected treatment. Each treatment preference was associated with the strength of the health state rating ( < 0.001).

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