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Cohen AB, Trentalange M, Benjamin AZ, Fried TR. Characteristics of Patients With Professional Guardians in the Department of Veterans Affairs Health Care System. JAMA Intern Med. 2019;179(1):107–108. doi:10.1001/jamainternmed.2018.4849
Among the most vulnerable patients encountered by health care professionals are those with impaired capacity who are represented by a professional guardian, defined as a paid official who is a stranger and is selected by a judge to act as a surrogate. Recent articles in the national media have documented abuse by professional guardians,1 and case reports have suggested that professional guardians often fail to make high-quality medical decisions.2 Even rudimentary information about patients with professional guardians is not known, however, because data about guardianship are not kept.3 How many patients have professional guardians, who these patients are, why they are impaired, and why the court becomes involved in selecting surrogates for them remain unclear. We sought to identify and characterize a population-based sample of patients with professional guardians using records from the Department of Veterans Affairs (VA), because courts in many jurisdictions are required to notify the VA when a guardian is appointed for a veteran.4
We obtained electronic notes and administrative data for patients receiving care at VA Connecticut Healthcare System facilities from January 1, 2003, through December 31, 2013. Using SQL Server (version 12.0; Microsoft Corporation), we searched standardized note titles and identified patients with note titles containing forms of guardian or conservator, such as Guardianship Note or Notice of Guardianship. We searched for the same words in the SPatient File, a database that contains information about relationships between veterans and their next-of-kin. We reviewed the medical records of patients flagged through these searches, determined whether a professional guardian made medical (rather than purely financial) decisions, and collected additional information, including the primary reason for incapacity and the reason a professional guardian had been selected. We used χ2 and t tests to compare characteristics of patients with and without professional guardians. Analyses were performed using SAS software (version 9.4; SAS Institute, Inc), with P < .05 (2-tailed) used to indicate statistical significance. Data were analyzed from December 11, 2015, through April 19, 2017. The research plan was approved by the institutional review boards at Yale University and the VA Connecticut Healthcare System with a waiver of informed consent.
Among 134 241 patients who received care at VA Connecticut Healthcare System facilities, 219 (0.2%) had professional guardians (Figure). Compared with other patients overall, those with professional guardians were older (mean [SD] age, 73.8 [13.9] vs 65.7 [19.7] years; P < .001), less likely to be married (24 of 209 with data available [11.5%] vs 63 012 of 121 410 [51.9%]; P < .001), and more likely to be male (211 of 219 [96.3%] vs 119 582 of 133 955 [89.3%]; P < .001) and nonwhite (38 of 208 with available data [18.3%] vs 14 191 of 113 634 [12.5%]; P < .001). As shown in the Table, psychotic disorders (81 [37.0%]) and dementia (78 [35.6%]) were the primary reasons for incapacity, and 121 patients (55.2%) were nursing home residents. Fifty-three patients with professional guardians (24.2%) had named another person as health care agent in an advance directive. Only 83 (37.9%) had no living family or no relationship with their family members.
In a large, population-based sample, professional guardianship was rare but tended to involve patients for whom medical decision making can be highly challenging: older adults with prolonged incapacity, more than half of whom were receiving long-term care. One reason to identify a trusted decision maker and to formalize that selection in an advance directive is the hope that these actions will obviate the need for a stranger to make decisions. More than 25% of patients with professional guardians had named a health care agent, however. Professional guardians were necessary not just for individuals with extreme social isolation but also for many others whose potential surrogates were unavailable or inappropriate.
Our study has several limitations, including the use of data that are limited to veterans from a single state, as well as our reliance on information in the medical record. Nevertheless, our findings suggest that some adults will require strangers to make decisions for them, even if advance care planning is optimized. The number of such persons is likely to rise as the US population with Alzheimer disease grows.5 Empirical work on decision making under guardianship and rigorous investigation of the alternatives that have been proposed6 are needed to ensure the best possible care for these patients.
Corresponding Author: Andrew B. Cohen, MD, DPhil, Section of Geriatrics, Yale School of Medicine, 333 Cedar St, PO Box 208025, New Haven, CT 06520 (email@example.com).
Published Online: November 5, 2018. doi:10.1001/jamainternmed.2018.4849
Author Contributions: Dr Cohen had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Cohen, Fried.
Acquisition, analysis, or interpretation of data: All authors.
Drafting of the manuscript: Cohen.
Critical revision of the manuscript for important intellectual content: All authors.
Statistical analysis: Cohen, Trentalange.
Obtained funding: Cohen.
Administrative, technical, or material support: Benjamin.
Conflict of Interest Disclosures: None reported.
Funding/Support: This study was supported by training grant T32AG1934 and Grants for Early Medical/Surgical Specialists’ Transition to Aging Research award R03AG053278 from the National Institute on Aging (Dr Cohen) and by grant P30AG21342 from the Claude D. Pepper Older Americans Independence Center at Yale University (all authors).
Role of the Funder/Sponsor: The funding sources were not involved in the design and conduct of the study; the collection, management, analysis, and interpretation of the data; or the preparation, review, and approval of the manuscript.