Who Makes Decisions for Incapacitated Patients Who Have No Surrogate or Advance Directive?

Abstract

Unrepresented patients are those who have no surrogate or advance directive to guide medical decision making for them when they become incapacitated. While there is no perfect solution to the problem of making medical decisions for such vulnerable patients, 3 different approaches are noted in the literature: a physician approach, an ethics committee approach, and a guardianship approach. Recent policies and laws have required an approach that is "tiered" with respect to both who is involved and the gravity of the medical treatment questions at issue. In a general sense, some variant of a tiered approach is likely the best possible solution for jurisdictions and health institutions-both those already with and those without a tiered approach-to the challenging puzzle of treating unrepresented patients. Single Greatest Category of Problems Unrepresented patients are incapacitated individuals whom Pope describes as having "no available friends or family to make medical decisions as 'default' surrogates." 1 These patients typically fall into 3 groups: those who are homeless or mentally ill, those who by "choice or life history" do not have family or friends who could act as a surrogate, and those elderly patients who have outlived their family and friends. 2 Indeed, the problem of addressing the "care of decisionally incapable patients" who have no surrogate to engage in the decision-making process is a bioethical puzzle and has been deemed by Karp and Wood to be "the single greatest category of problems" encountered by hospitals and clinicians. 3

Using natural language processing to identify acute care patients who lack advance directives, decisional capacity, and surrogate decision makers

“…Though we found only a small percentage of patients to be INEADS, the absolute number of patients meeting these criteria in the United States is significant [ 9 ]. This phenomenon is worthy of further study, especially considering that decision-making processes for INEADS patients are not well characterized, and available data suggest they may be ethically troubling.…”

“…At the same time, 33–65% of hospitalized adults lack decisional capacity [ 4 – 6 ]. This leaves patients vulnerable to receiving care that is unaligned with their values, goals, and preferences, and places care teams in the difficult position of having to search for patient advocates and navigate an ethically fraught plan of care [ 7 – 9 ]. In the absence of advance directives and appointed healthcare proxies, care teams often identify family or friends who can provide information about patients’ wishes and values [ 10 ].…”

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

“…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. 6 These patients are some of the most vulnerable people in our society, and since so little is known about them as individuals, making medical decisions for them is one of the most difficult and controversial challenges that arises in hospitals and bioethics today.…”

“…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. 6…”