Making Medical Decisions for Incapacitated Patients Without Proxies: Part II

Abstract

In the United States, there is no consensus about who should make decisions in acute but non-emergent situations for incapacitated patients who lack surrogates. For more than a decade, our academic medical center has utilized community volunteers from the hospital ethics committee to engage in shared decision-making with the medical providers for these patients. In order to add a different point of view and minimize conflict of interest, the volunteers are non-clinicians who are not employed by the hospital. Using case examples and interviews with the community members, this paper describes how the protocol has translated into practice over the years since its inception. Members reported comfort with the role as well as satisfaction with the thoroughness of their discussions with the medical team. They acknowledged feelings of moral uncertainty, but expressed confidence in the process. Questions raised by the experience are discussed. Overall, the protocol has provided oversight, transparency, and protection from conflict of interest to the decision-making process for this vulnerable patient population.

Ethical Considerations in Clinical Trials for Disorders of Consciousness

“…For example, while surrogate consent is perhaps the most ubiquitous approach when conducting research involving incapacitated persons, the ability of a surrogate to provide consent may be precluded by restricted time windows to enrollment, or may be compromised by psychological stress induced by a high-acuity brain injury in a loved one. Moreover, surrogate decision-makers are often unknown or unavailable in acute settings, and where they are available, they may not be familiar with the participant’s wishes [ 86 , 87 , 88 , 89 , 90 , 91 , 92 , 93 ].…”

Making Medical Treatment Decisions for Unrepresented Patients in the ICU. An Official American Thoracic Society/American Geriatrics Society Policy Statement

“…Whenever possible, the interprofessional, multidisciplinary committee should include three to five members, including a physician, a nurse, and one person who is neither (e.g., a chaplain or social worker). Whenever possible, this committee should include representation from social work, the ethics committee, and the community (83,84). The committee should not include members of the primary treatment team or its medical consultants (23).…”

Public Guardianship: Policy and Practice

“…Studies in intensive care units revealed that 16 percent of patients admitted have no family or friend guardian (White, Curtis, Lo, & Luce, 2006), and these patients account for 5.5 percent of deaths annually (White et al, 2007). For those assessed in acute care settings, a large proportion of individuals without a family or friend guardian are admitted from nursing homes (Cohen, Benjamin, & Fried, 2019; Courtwright, Abrams, & Robinson, 2017; Griggins, Blackstone, McAliley, & Daly, 2019). Research estimates that older adults under public guardianship comprise 3 to 4 percent of the nursing home population, an estimate based on anecdotal information from focus groups of healthcare leaders (Karp & Wood, 2003).…”

“…They note that while there are various decision‐making mechanisms, there is little understanding of the implications of these different approaches on patient/client health outcomes. Professional societies, state legislation, and hospital policies all vary on how to care for patients whose wishes and preferences might be unknown (Blackstone, Daly, & Griggins, 2019; Pope, 2017).…”