The Burden of Guardianship: A Matched Cohort Study

A central tenet of modern medicine is that patients must provide fully informed consent to receive or refuse medical care offered by their clinical teams.^1–4 If a patient is unable to make and communicate a choice or clearly indicate an understanding of the information presented, then he or she is considered to lack the capacity to make medical decisions and the medical team must seek consent from the patient’s surrogate decision-maker.^2-7 Every U.S. state recognizes a patient’s healthcare proxy (HCP) and a court-appointed guardian as a legally recognized surrogate.^8,9 Most of the states also have statutes or regulations establishing a hierarchy of legally recognized surrogate decision-makers in the absence of a HCP or a court-appointed guardian, such as spouses, adult children, parents, siblings, and grandparents.^8,10 In states that do not have such a statute, hospitals develop their own institutional policies for surrogate decision-making.

However, there are important limitations on the authority of these surrogate decision-makers.¹⁰ For instance, patients may not have a family member or a friend to serve as a surrogate decision-maker, often family members cannot override a patient’s objection, even when that patient lacks decision-making capacity, and certain decisions require a guardian or a HCP.^8-10 In these circumstances, the hospital must petition a court to appoint a guardian as a legally recognized surrogate decision-maker. This can be an involved family member, if one exists, or an independent, typically volunteer, guardian.¹¹ The process of guardian appointment is complex^7,11 and can range from a few days to more than a month, largely dependent on court dates and finding a volunteer guardian. Much of the process occurs during the patient’s hospital stay. This prolongation of hospitalization would be expected to increase health care costs and iatrogenic complications,^12–14 but data quantifying these for patients requiring guardianship are lacking. The goal of this study was to describe the characteristics of patients who undergo the process of guardianship and measure the associated burdens. These burdens include the financial costs to the medical system, the prolonged length of stay beyond medical necessity, and the costs to the patient in the form of hospital-acquired complications. Investigating the burden of guardianship is an important first step in uncovering opportunities to improve the process. We hypothesized that patients requiring guardianship would have lengths of stay and healthcare costs that were at least as large as those for patients whose conditions required similar durations of hospitalization prior to medical clearance, in part due to iatrogenic complications that would accrue while awaiting guardian appointment.

Setting

We conducted a retrospective matched cohort study of adult inpatients at Beth Israel Deaconess Medical Center (BIDMC), a 651-bed academic, tertiary care facility in Boston, MA. The study was approved by the BIDMC Institutional Review Board as a nonhuman subject research consistent with hospital operations.

Population

For this matched cohort study, we identified case patients as those hospitalized for any reason for whom guardianship proceedings were initiated and obtained; only the first hospitalization during which the guardianship was pursued was used. Cases were identified by obtaining the data of all patients for whom the BIDMC general counsel completed the process of guardianship between October 2014 and September 2015. At BIDMC, all the guardianship proceedings are referred to the general counsel.

To determine the postclearance experience for referred patients compared with that for other patients with similar lengths of stay up to those of the referred patients’ point of clearance, we identified up to three matched controls for each case (Supplemental Figure 1). Medical clearance was defined as the date when the patient was medically stable to be discharged from the hospital, and it was determined in an iterative manner. We identified controls as hospitalized patients admitted for any cause and matched to the cases requiring guardianship on discharging service and length of stay prior to clearance. Specifically, we identified patients on the same service as the case whose length of stay was at least as long as the length of stay of the case patient until medical clearance, as defined below. We then determined the total and the excess length of stay, defined as the duration beyond clearance for each case referred for guardianship; for controls, the ‘excess’ length of stay was the number of hospitalized days beyond the corresponding time that a matched case had been provided clearance. To account for seasonal influences and the training level of house officers, we selected the three controls whose discharge date was closest (before or after) to the discharge date of their matched case.

From legal team files, we identified 61 patients hospitalized at BIDMC for whom new guardianship was pursued to completion. Of these 61 patients, 10 could not be matched to an appropriate control and were included in descriptive analyses but not in comparisons with controls.