Characteristics of Patients with Professional Guardians in the Department of Veterans Affairs Health Care System

Introduction

Among the most vulnerable patients encountered by clinicians are those with impaired capacity who are represented by a professional guardian — 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 they 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 It is unclear how many patients have professional guardians, who these patients are and why they are impaired, and why the court becomes involved in selecting surrogates for them. We sought to identify and characterize a population-based sample of patients with professional guardians using records from the Department of Veterans Affairs (VA), since courts in many jurisdictions are required to notify the VA when a guardian is appointed for a veteran.⁴

Methods

We obtained electronic notes and administrative data for patients receiving care at Connecticut VA facilities from 2003–13. Using SQL Server 12.0 (Microsoft Corp., Redmond, WA), we searched standardized note titles and identified patients with note titles containing forms of the words “guardian” or “conservator,” like “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 charts 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. Chi-square and student’s t-tests were used to compare characteristics of patients with and without professional guardians. Analyses were performed using SAS version 9.4 (SAS Institute, Cary, NC), with p <0.05 (two-tailed) used to indicate statistical significance.

Results

Among 134,241 patients who received care at Connecticut VA facilities, 219 (0.2%) had professional guardians (Figure). Compared to patients overall, those with professional guardians were older (73.8 [SD 13.9] years versus 65.7 [SD 19.7] years; p<0.001), less likely to be married (11.5% versus 51.9%; p<0.001), and more likely to be male (96.3% versus 89.3%; p<0.001) and non-white (18.3% versus 12.5%; p<0.001). As shown in the Table, psychotic disorders (37%) and dementia (35.6%) were the primary reasons for incapacity, and 55.3% were nursing home residents. Nearly one quarter of patients with professional guardians had named another person as health care agent in an advance directive. Only 37.9% had no living family or no relationship with their family members.

Figure.

Identification of patients under guardianship

Table.

Characteristics of patients with professional guardians

	Patients with professional guardians (n = 219)
Reason for incapacity, n (%)a
Psychotic disorder	81 (37.0)
Dementia	78 (35.6)
Substance abuse	29 (13.2)
Organic brain lesionb	16 (7.3)
Other	11 (5.0)
Unable to determine	4 (1.8)
Place of residence, n (%)
Nursing home	121 (55.3)
Private home	62 (28.3)
Other residential settingc	32 (14.6)
Homeless	4 (1.8)
Professional guardian’s background, n (%)
Lawyer	189 (86.3)
Social worker	6 (2.7)
State agency employee	12 (5.5)
Other	12 (5.5)
Document appointing a different health care agent present in medical record, n (%)
Yes	53 (24.2)
No	166 (75.8)
Reason for professional guardianship, n (%)
Patient had no relationship with any family member	83 (37.9)
Family members were not appropriate	56 (25.6)
Concern for elder abuse or neglect	24 (11.0)
Lived too far away	9 (4.1)
Had own medical issues	9 (4.1)
Patient refused to involve them	8 (3.7)
Not available consistently to medical team	3 (1.4)
Disagreed among themselves	3 (1.4)
Family members were unwilling to make decisions	25 (11.4)
Family members involved with care, but not chosen	29 (13.2)
Insufficient information to determine	26 (11.9)

^aColumn percentages.

^bRefers to patients with acute stroke, traumatic brain injury, and metastatic disease to the brain.

^cIncludes assisted living facilities, state veterans’ homes, and rest homes.

Discussion

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 in 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. What these findings suggest is 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 population of Americans with Alzheimer’s disease grows.⁵ Empirical work on decision-making under guardianship, and rigorous investigation of the alternatives that have been proposed,⁶ are needed to ensure the best possible care for these patients.