Guardianship Before and Following Hospitalization.

When ethics committees are consulted about patients who have or need court-appointed guardians, they lack empirical evidence about several common issues, including the relationship between guardianship and prolonged, potentially medically unnecessary hospitalizations for patients. To provide information about this issue, we conducted quantitative and qualitative analyses using a retrospective cohort from Veterans Healthcare Administration. To examine the relationship between guardianship appointment and hospital length of stay, we first compared 116 persons hospitalized prior to guardianship appointment to a comparison group (n = 348) 3:1 matched for age, diagnosis, date of admission, and comorbidity. We then compared 91 persons hospitalized in the year following guardianship appointment to a second matched comparison group (n = 273). Mean length of stay was 30.75 days (SD = 46.70) amongst those admitted prior to guardianship, which was higher than the comparison group (M = 7.74, SD = 9.71, F = 20.75, p < .001). Length of stay was lower following guardianship appointment (11.65, SD = 12.02, t = 15.16, p < .001); while higher than the comparison group (M = 7.60, SD = 8.46), differences were not associated with guardianship status. In a separate analysis involving 35 individuals who were hospitalized both prior to and following guardianship, length of stay was longer in the year prior (M = 23.00, SD = 37.55) versus after guardianship (M = 10.37, SD = 10.89, F = 4.35, p = .045). In qualitative analyses, four themes associated with lengths of stay exceeding 45 days prior to guardianship appointment were: administrative issues, family conflict, neuropsychiatric comorbidity, and medical complications. Our results suggest that persons who are admitted to hospitals, and subsequently require a guardian, experience extended lengths of stay for multiple complex reasons. Once a guardian has been appointed, however, differences in hospital lengths of stay between patients with and without guardians are reduced.

Unrepresented Adults Face Adverse Healthcare Consequences: The Role of Guardians, Public Guardianship Reform, and Alternative Policy Solutions.

Persons without family or friends to serve as healthcare agents may become "unrepresented" in healthcare, with no one to serve as healthcare agents when decisional support is needed. Surveys of clinicians (N = 81) and attorneys/guardians (N = 23) in Massachusetts reveal that unrepresented adults experience prolonged hospital stays (66%), delays in receiving palliative care (52%), delays in treatment (49%), and other negative consequences. Clinicians say guardianship is most helpful in resolving issues related to care transitions, medical treatment, quality of life, housing, finances, and safety. However, experiences with guardianship are varied, with delays often/always in court appointments (43%) and actions after appointments (24%). Policy solutions include legal reform, education, and alternate models.

"I worry about this patient EVERY day": Geriatrics Clinicians' Challenges in Caring for Unrepresented Older Adults.

Unrepresented older adults are at risk for adverse outcomes, and clinicians who care for them may face ethical dilemmas and unique challenges when making person-centered care recommendations. However, little is known about their perspectives on clinical challenges in caring for this population. An online survey was used to assess issues around providing care for unrepresented patients. Ninety-two American Geriatrics Society members working with older adults in inpatient and/or outpatient settings completed the survey. Descriptive qualitative analysis of narrative survey responses identified five broad themes: (a) health risk characteristics of patients, (b) care decisions facing the team, (c) psychosocial considerations by the team, (d) patient outcomes, and (e) burden of the provider and/or health system. These findings demonstrate that geriatrics clinicians face challenges in working with unrepresented adults in both inpatient and outpatient settings. We interpret these results in light of existing literature and propose collaborative approaches that may improve outcomes.

End-of-Life Care for Persons Under Guardianship.

CONTEXT: Guardians are surrogate decision makers appointed by a court when other health care decision-makers are unable, unwilling, or unavailable to make decisions. Prior studies suggest that persons under guardianship may experience delays in transitions of care. OBJECTIVES: To compare quality of end-of-life care for persons under guardianship to a matched group on objective indicators and to identify narrative themes characterizing potential obstacles to quality end-of-life care. METHODS: One hundred sixty-seven persons under guardianship who died between 2003 and 2019 within the Veterans Healthcare Administration in Massachusetts and Connecticut matched on a 1:1 basis to persons without guardians. The groups were compared on treatment specialty at death, days of hospice and intensive care unit care, and receipt of palliative care consultation. Additionally, patient narratives for those under guardianship with extended lengths in intensive care unit were subjected to qualitative analysis. RESULTS: Overall, <1% were under guardianship. Within this sample of persons who died within the Veterans Health Administration, persons under guardianship were as likely as patients in the comparison group to receive palliative care consultation (odds ratio [CI] = 0.93 [.590-1.46], P = .359), but were more likely to have ethics consultation (odds ratio [CI] = 0.25 [0.66-0.92], P = .036) and have longer lengths of ICU admission (ß = -.34, t = -2.70, P = .009). Qualitative findings suggest that issues related to family conflict, fluctuating medical course, and limitations in guardian authority may underlie extended lengths of stay. CONCLUSION: Guardianship appears to be rare, and as a rule, those under guardianship have equal access to hospice and palliative care within Veterans Health Administration. Guardianship may be associated with health-care challenges in a small number of cases, and this may drive perceptions of adverse outcomes.

Caring for Unbefriended Older Adults and Adult Orphans: A Clinician Survey.

Objectives: Unbefriended older adults are those who lack the capacity to make medical decisions and do not have a completed advance directive that can guide treatment decisions or a surrogate decision maker. Adult orphans are those who retain medical decision-making capacity but are at risk of becoming unbefriended due to lack of a completed advance health care directive and lack of a surrogate decision maker. In a follow-up to the 2016 American Geriatrics Society (AGS) position statement on unbefriended older adults, we examined clinicians' experiences in caring for unbefriended older adults and adult orphans.Methods: Clinicians recruited through the AGS (N = 122) completed an online survey about their experiences with unbefriended older adults regarding the perceived frequency of contact, clinical concerns, practice strategies, and terminology; and also with adult orphans regarding the perceived frequency of contact, methods of identification, and terminology.Results: Almost all inpatient (95.9%) and outpatient (86.4%) clinicians in this sample encounter unbefriended older adults at least quarterly and 92.2% of outpatient clinicians encounter adult orphans at least quarterly. Concerns about safety (95.9%), medication self-management (90.4%), and advance care planning (86.3%) bring unbefriended older adults to outpatient clinicians' attention "sometimes" to "frequently." Prolonged hospital stays (87.7%) and delays in transitioning to end-of-life care (85.7%) bring unbefriended older adults to inpatient clinicians' attention "sometimes" to "frequently." Clinicians apply a wide range of practice strategies to these populations. Participants suggested alternative terminology to replace "unbefriended" and "adult orphan."Conclusions: This study suggests that unbefriended older adults are frequently encountered in geriatrics practice, both in the inpatient and outpatient settings, and that there is widespread awareness of adult orphans in the outpatient setting. Clinicians' awareness of both groups suggests avenues for intervention and prevention.Clinical Implications: Health care professionals in geriatric settings will likely encounter older adults in need of advocates. Clinicians, attorneys, and policymakers should collaborate to improve early detection and to meet the needs of this vulnerable population.

Making End-of-Life Care Decisions for Older Adults Subject to Guardianship.

This Article addresses end-of-life decision-making by guardians of older adults. First, the Article presents current definitions of hospice and palliative care and describes several common end-of-life disease trajectories. This background information introduces the diverse contexts in which guardians may find themselves when making end-of-life care decisions. The next section sets forth results of our recent research focusing on end-of-life care for unbefriended adults subject to guardianship. "Unbefriended" adults are thoses who lack decision-making capacity, have no advance directive, and have no family or friends to serve as a surrogate decision-maker. As such, professional guardians may be appointed when health care decisions are needed. Making health care decisions for such adults, particularly end-of-life care decisions, can be challenging. Little to nothing may be known about the person's values prior to guardianship and the patient may be unable to convey his or her wishes and goals to the guardian. The third section provides practical guidance to guardians. We discuss the assessment of values-with some thoughts about what to do when it is not possible to assess values. Finally, we discuss several common end-of-life health care decisions that may confront guardians-a code status change, a do not transfer order, and deescalating care within an intensive care unit. For these situations, we provide information from the perspective of our interdisciplinary team for the purposes of supporting guardians who face these challenging decisions.

Ethical Concerns and Procedural Pathways for Patients Who are Incapacitated and Alone: Implications from a Qualitative Study for Advancing Ethical Practice.

Adults who are incapacitated and alone, having no surrogates, may be known as "unbefriended." Decision-making for these particularly vulnerable patients is a common and vexing concern for healthcare providers and hospital ethics committees. When all other avenues for resolving the need for surrogate decision-making fail, patients who are incapacitated and alone may be referred for "public guardianship" or guardianship of last resort. While an appropriate mechanism in theory, these programs are often under-staffed and under-funded, laying the consequences of inadequacies on the healthcare system and the patient him or herself. We describe a qualitative study of professionals spanning clinical, court, and agency settings about the mechanisms for resolving surrogate consent for these patients and problems therein within the state of Massachusetts. Interviews found that all participants encountered adults who are incapacitated and without surrogates. Four approaches for addressing surrogate needs were: (1) work to restore capacity; (2) find previously unknown surrogates; (3) work with agencies to obtain surrogates; and (4) access the guardianship system. The use of guardianship was associated with procedural challenges and ethical concerns including delays in care, short term gains for long term costs, inabilities to meet a patient's values and preferences, conflicts of interest, and ethical discomfort among interviewees. Findings are discussed in the context of resources to restore capacity, identify previously unknown surrogates, and establish improved surrogate mechanisms for this vulnerable population.