Who Are “Unrepresented” Patients and What Count as “Important” Medical Decisions for Them?

Abstract

Unrepresented patients are hospital patients who lack decision-making capacity but have no advance directive and no one to serve as a legally authorized surrogate. An important first step in efforts to change the law and develop organizational policies that help respond to these patients' needs is determining which patients should be considered unrepresented and which aspects of hospital care should receive attention. This article proposes working definitions of unrepresented patient and important medical decisions based on the work of one statewide initiative, the Unrepresented Patients Project for Illinois.

Refusal of Representation in Advance Care Planning: A Case‐Inspired Ethical Analysis

“…Such teams can remain the same throughout a patient's hospitalization, reducing the inconsistency generated by the frequent rotation of treating physicians. In our region, we watch with interest the Unrepresented Patients Project for Illinois, 30 which aims to standardize mechanisms for interdisciplinary team‐based decision‐making across hospital systems, with the eventual hope of introducing state law that permits such teams to act as a legal surrogate.…”

Jewish Values in Medical Decision-making for Unrepresented Patients: A Ritualized Approach

“…Many American hospitals care for an alarmingly high number of these patients. They are often referred to as “adult orphans,” or “unbefriended,” “isolated,” or “incapacitated patients without advocates,” 2 , 3 but the most common term is “unrepresented.” 4 Such patients currently account for over 5% of deaths in intensive care units, and the numbers are increasing, particularly amongst the elderly, homeless, and mentally disabled. 5 The situation became even worse during the COVID-19 pandemic due to patients’ confusion and isolation as a result of strict visitation policies, causing significant moral distress to clinicians.…”

“…In addition to that, because physicians often rotate and each one may have different views about proper care plans, unrepresented patients may be exposed to a lack of continuity of care and further arbitrariness in treatment decisions. 4 Moral guidance is needed to support these patients and their healthcare providers, and although traditional Jewish law does not afford unlimited decision-making autonomy to patients, their own goals and preferences can often be relevant in determining appropriate interventions.…”

“…2 Although it is essential to ensure a decision-making process that is accessible, quick, convenient, and cost-effective, utilizing the values outlined above for cases which are neither urgent nor routine would seem to require engaging in the most rigorous safeguards of expertise, neutrality, and careful deliberation. 4 I therefore believe that in decision-making for unrepresented patients, Jewish ethics would advocate for following the more demanding process of involving a diverse interdisciplinary committee, comprising not only the treating clinicians, but also individuals representing that patient’s own religious or cultural community, whenever necessary and possible.…”