Supported Decision Making in Serious Mental Illness

Abstract

Objective: Making decisions is central to the exercise of control over one’s well-being. Many individuals with serious mental illness (SMI) experience limitations in their decision-making capacity. These individuals have often been placed under legal guardianship and substitute decision makers have been appointed to make decisions on their behalf. More recently, supported decision making (SDM) has emerged as a possible alternative in some cases. SDM involves recruitment of trusted supports to enhance an individual’s capacity in the decision-making process, enabling him or her to retain autonomy in life decisions. This overview examines issues associated with decision-making capacity in SMI, frameworks of substitute decision making and SDM, and emerging empirical research on SDM. Method: This is an overview of the medical and legal literature on decision making capacity and supported decision making for persons with SMI. Results: Many but not all individuals with SMI exhibit decrements in decision-making capacity and skill, in part due to cognitive impairment. There are no published data on rates of substitute decision making/guardianship or SDM for SMI. Only three empirical studies have explored SDM in this population. These studies suggest that SDM is viewed as an acceptable and potentially superior alternative to substitute decision making for patients and their caretakers. Conclusions: SDM is a promising alternative to substitute decision making for persons with SMI. Further empirical research is needed to clarify candidates for SDM, decisions in need of support, selection of supporters, guidelines for the SDM process, integration of SDM with emerging technological platforms, and outcomes of SDM. Recommendations for implementation of and research on SDM for SMI are provided.

FUNDING AND ACKNOWLEDGMENTS

This work was supported, in part, by National Institute of Mental Health (NIMH) grant 5R01 MH094151-04 (Jeste), the NIMHT32 Geriatric Mental T32 Geriatric Mental Health Program MH019934 (PI: Jeste), UC San Diego’s Stein Institute for Research on Aging (Director: Jeste), a cooperative agreement (PI: The Quality Trust for Individuals with Disabilities) with the U.S. Administration for Community Living (ACL), Department of Health and Human Services, Washington, D.C. 20201, and a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), within ACL (PI: Blanck), and Battery Powered (PI: Saks). Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy or other government agencies.

Additional information

Funding

This work was supported, in part, by a National Institute of Mental Health (NIMH) grant (5R01 MH094151-04; Jeste), the NIMH T32 Geriatric Mental Health Program MH019934 (PI: Jeste), UC San Diego’s Stein Institute for Research on Aging (director: Jeste), a cooperative agreement (PI: The Quality Trust for Individuals with Disabilities) with the U.S. Administration for Community Living (ACL), Department of Health and Human Services, Washington, DC 20201, and a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), within ACL (PI: Blanck), and Battery Powered (PI: Saks). Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy or those of other government agencies.

Notes on contributors

Dilip V. Jeste

Dilip V. Jeste, MD, and Graham M. L. Eglit, PhD, are affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; they are also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla. Barton W. Palmer, PhD, is affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; he is also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla, and the Veterans Affairs San Diego Healthcare System in San Diego. Jonathan G. Martinis, JD, and Peter Blanck, PhD, JD, are affiliated with the Burton Blatt Institute at Syracuse University in Syracuse, New York. Elyn R. Saks, JD, PhD, is affiliated with the Gould School of Law, Saks Institute for Mental Health Law, Policy, and Ethics, at the University of Southern California in Los Angeles.

Graham M. L. Eglit

Dilip V. Jeste, MD, and Graham M. L. Eglit, PhD, are affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; they are also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla. Barton W. Palmer, PhD, is affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; he is also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla, and the Veterans Affairs San Diego Healthcare System in San Diego. Jonathan G. Martinis, JD, and Peter Blanck, PhD, JD, are affiliated with the Burton Blatt Institute at Syracuse University in Syracuse, New York. Elyn R. Saks, JD, PhD, is affiliated with the Gould School of Law, Saks Institute for Mental Health Law, Policy, and Ethics, at the University of Southern California in Los Angeles.

Barton W. Palmer

Dilip V. Jeste, MD, and Graham M. L. Eglit, PhD, are affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; they are also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla. Barton W. Palmer, PhD, is affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; he is also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla, and the Veterans Affairs San Diego Healthcare System in San Diego. Jonathan G. Martinis, JD, and Peter Blanck, PhD, JD, are affiliated with the Burton Blatt Institute at Syracuse University in Syracuse, New York. Elyn R. Saks, JD, PhD, is affiliated with the Gould School of Law, Saks Institute for Mental Health Law, Policy, and Ethics, at the University of Southern California in Los Angeles.

Jonathan G. Martinis

Dilip V. Jeste, MD, and Graham M. L. Eglit, PhD, are affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; they are also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla. Barton W. Palmer, PhD, is affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; he is also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla, and the Veterans Affairs San Diego Healthcare System in San Diego. Jonathan G. Martinis, JD, and Peter Blanck, PhD, JD, are affiliated with the Burton Blatt Institute at Syracuse University in Syracuse, New York. Elyn R. Saks, JD, PhD, is affiliated with the Gould School of Law, Saks Institute for Mental Health Law, Policy, and Ethics, at the University of Southern California in Los Angeles.

Peter Blanck

Dilip V. Jeste, MD, and Graham M. L. Eglit, PhD, are affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; they are also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla. Barton W. Palmer, PhD, is affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; he is also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla, and the Veterans Affairs San Diego Healthcare System in San Diego. Jonathan G. Martinis, JD, and Peter Blanck, PhD, JD, are affiliated with the Burton Blatt Institute at Syracuse University in Syracuse, New York. Elyn R. Saks, JD, PhD, is affiliated with the Gould School of Law, Saks Institute for Mental Health Law, Policy, and Ethics, at the University of Southern California in Los Angeles.

Elyn R. Saks

Dilip V. Jeste, MD, and Graham M. L. Eglit, PhD, are affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; they are also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla. Barton W. Palmer, PhD, is affiliated with the Department of Psychiatry at the University of California, San Diego, in La Jolla; he is also affiliated with the Sam and Rose Stein Institute for Research on Aging at the Univeristy of California, San Diego, in La Jolla, and the Veterans Affairs San Diego Healthcare System in San Diego. Jonathan G. Martinis, JD, and Peter Blanck, PhD, JD, are affiliated with the Burton Blatt Institute at Syracuse University in Syracuse, New York. Elyn R. Saks, JD, PhD, is affiliated with the Gould School of Law, Saks Institute for Mental Health Law, Policy, and Ethics, at the University of Southern California in Los Angeles.