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Projection of Care Partners’ Preferences in the Proxy Assessments of Everyday Preferences for Persons With Cognitive Impairment

  • James M. Wilkins
    Correspondence
    Send correspondence and reprint requests to James M. Wilkins, M.D., D.Phil., Division of Geriatric Psychiatry, McLean Hospital, 115 Mill Street, Belmont, MA, 02478.
    Affiliations
    McLean Hospital (JMW, BPF), Belmont, MA

    Harvard Medical School (JMW, JJL, TGI, BTH, DB, BPF, OIO), Boston, MA
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  • Joseph J. Locascio
    Affiliations
    Harvard Medical School (JMW, JJL, TGI, BTH, DB, BPF, OIO), Boston, MA

    Department of Neurology (JJL, TGI, BTH, DB, OIO), Massachusetts Alzheimer's Disease Research Center, Massachusetts General Hospital, Boston, MA

    Harvard Catalyst Biostatistical Consulting (JJL), Harvard Catalyst/CTSA, Boston, MA
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  • Teresa Gomez-Isla
    Affiliations
    Harvard Medical School (JMW, JJL, TGI, BTH, DB, BPF, OIO), Boston, MA

    Department of Neurology (JJL, TGI, BTH, DB, OIO), Massachusetts Alzheimer's Disease Research Center, Massachusetts General Hospital, Boston, MA
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  • Bradley T. Hyman
    Affiliations
    Harvard Medical School (JMW, JJL, TGI, BTH, DB, BPF, OIO), Boston, MA

    Department of Neurology (JJL, TGI, BTH, DB, OIO), Massachusetts Alzheimer's Disease Research Center, Massachusetts General Hospital, Boston, MA
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  • Deborah Blacker
    Affiliations
    Harvard Medical School (JMW, JJL, TGI, BTH, DB, BPF, OIO), Boston, MA

    Department of Neurology (JJL, TGI, BTH, DB, OIO), Massachusetts Alzheimer's Disease Research Center, Massachusetts General Hospital, Boston, MA

    Department of Psychiatry (DB, OIO), Massachusetts General Hospital, Boston, MA
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  • Brent P. Forester
    Affiliations
    McLean Hospital (JMW, BPF), Belmont, MA

    Harvard Medical School (JMW, JJL, TGI, BTH, DB, BPF, OIO), Boston, MA
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  • Olivia I. Okereke
    Affiliations
    Harvard Medical School (JMW, JJL, TGI, BTH, DB, BPF, OIO), Boston, MA

    Department of Neurology (JJL, TGI, BTH, DB, OIO), Massachusetts Alzheimer's Disease Research Center, Massachusetts General Hospital, Boston, MA

    Department of Psychiatry (DB, OIO), Massachusetts General Hospital, Boston, MA
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Published:December 10, 2022DOI:https://doi.org/10.1016/j.jagp.2022.12.005

      Highlights

      • What is the primary question addressed by this study?— To what extent do care partners project their own preferences onto surrogate assessments of everyday preferences for persons with cognitive impairment and dementia?
      • What is the main finding of this study?— Significant projection was noted within preference domains of autonomous choice, personal growth, and keeping a routine. More significant cognitive impairment was associated with increased projection within the preferences domains of autonomous choice and personal growth.
      • What is the meaning of the finding?— From a bioethical standpoint, the goal of surrogate decision-making is to align surrogate decisions with what persons would choose for themselves; these data highlight decisional areas where extra attention is needed by care partners to improve the fidelity in the decision-making process.

      ABSTRACT

      Objective

      Bias in surrogate decision-making can occur when proxy decision-makers overestimate the degree to which their preferences are shared by others, resulting in a projection of their beliefs onto others. The purpose of this study is to assess projection of care partners’ preferences onto surrogate assessments of everyday preferences for persons with cognitive impairment (CI) and to address clinical and demographic factors as predictors of projection.

      Methods

      The sample included 116 dyads of persons with CI (Clinical Dementia Rating Scale score ≥ 0.5) and their care partners. The Preferences for Everyday Living Inventory (PELI) was used to assess importance of preferences among persons with CI. Care partners completed two separate PELI assessments: one from the perspective of the persons with CI (i.e., acting as a surrogate decision-maker) and one from their own perspective. To assess for projection of care partners’ preferences onto surrogate assessments of preferences for persons with CI, two-step regression with multivariable-adjusted general linear models was used.

      Results

      Significant projection was noted within the PELI domains of autonomous choice, personal growth, and keeping a routine (p < 0.005). More significant cognitive impairment was associated with increased projection within the PELI domains of autonomous choice and personal growth (p < 0.05).

      Conclusion

      The results of this study suggest that projection of care partners’ own preferences may be a significant source of bias in proxy decision-making regarding everyday preferences for persons with CI, particularly for those with more significant CI.

      Key Words

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