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Guidance for Treating ‘Unrepresented Patients’ in the ICU
Why the Ethical Principles Matter More Than Ever

Article In Brief

A position statement from the American Thoracic Society and American Geriatrics Society suggests that when treating “unrepresented” patients in the intensive care unit, hospitals and doctors should seek out advice from various sources, even the hospital ethics committee. Experts discuss how COVID-19 affects the guideline and may call for unilateral treatment decisions.

Physicians and hospitals should seek input and advice from as wide an array of sources as possible—including, when feasible, the support of a hospital ethics committee—in treatment decisions regarding “unrepresented” patients in the intensive care unit (ICU).

That's one of six policy recommendations for managing patients in the ICU who are incapacitated and have no one to speak on their behalf. The recommendations regarding unrepresented patients in the ICU—also referred to sometimes as “un-befriended”—were developed by an interdisciplinary committee of the American Thoracic Society (ATS) and the American Geriatric Society (AGS) and published May 15 in the American Journal of Respiratory and Critical Care Medicine.

The work of the panel predates the spread of COVID-19, but experts who reviewed the paper told Neurology Today the problems addressed in the joint statement may be heightened in the context of the pandemic when hospitals and physicians in critical care may be more than normally compelled to make unilateral treatment decisions.

“Unrepresented patients in the ICU are among the most vulnerable of patients seen in the health care system,” said lead author Thaddeus Pope, JD, PhD, HEC-C, in comments to Neurology Today.

“They are sick enough to be in the ICU, sick enough to be incapacitated, and are without a surrogate who knows and cares about them. They are vulnerable for all of those reasons, and we aren't doing a very good job of protecting them from the risks of either under-treatment or over-treatment.”

Dr. Pope and experts who reviewed the paper for Neurology Today agreed that a broad base of support and input is one of the most critical of the recommendations for managing a patient who is truly without someone to speak for them. They also concurred that it is rare when somebody cannot be located to at least offer insight into how the patient lived and what he or she may have thought and cared about.

“It's pretty infrequent that someone doesn't have someone in their life who can speak to the way they lived it—a friend at the bar or the golf club or the book club that can tell you about who they were, how they lived and what they thought, “ said Michael A. Rubin, MD, MA, FAAN, associate professor in the departments of neurology and neurotherapeutics and neurological surgery at the University of Texas Southwestern Medical Center. “They may be reluctant to come forward or be making decisions for the patient, but they can at least offer something more than what the attending physician may know.”

In 2016, the ATS and AGS convened a 21-member interdisciplinary panel, including biomedical ethicists, legal experts and physicians from multiple disciplines to propose recommendations for care of unrepresented patients in the ICU.

Existing professional guidelines on unrepresented patients outside the ICU differ substantially with regard to who may speak as a surrogate for a patient, and state laws governing surrogacy also vary markedly.

Moreover, there is little or no data on how unrepresented patients in the ICU are managed in usual care. “It hasn't been studied as well as it should be,” said Dr. Pope. “The dominant model is that the attending physician will just do what he or she thinks is right. That's a purely paternalistic model that medicine has moved away from since the 1970s.”

The working group reviewed known relevant literature, including journals with a focus in medicine, critical care, bioethics, and law, as well as existing policies of other medical organizations. The group then developed the content of this policy through a three-year iterative discussion–based consensus process consisting of face-to-face meetings, teleconferences, web conferences, and electronic correspondence.

A writing committee drafted the policy statement, which the working group members then reviewed on multiple occasions and revised. The policy statement was further modified and ultimately approved by members of the ATS and AGS ethics committees. This statement then underwent a peer review process and ultimately review by both the ATS Board of Directors and the AGS Board of Directors.

The interdisciplinary panel developed five broad ethical goals and six policy recommendations. The five ethical goals of the policy recommendations seek to protect highly vulnerable patients; demonstrate respect for persons; provide appropriate medical care; safeguard against unacceptable discrimination; and avoid undue influence of competing obligations and conflicting interests.

On the basis of these broad principles, the group recommends that institutions should do the following:

  • offer advance care planning to prevent patients at high risk for becoming unrepresented from meeting this definition;
  • implement strategies to determine whether seemingly unrepresented patients are actually unrepresented, including careful capacity assessments and diligent searches for potential surrogates;
  • manage decision-making for unrepresented patients using input from a diverse interprofessional, multidisciplinary committee rather than ad hoc by treating clinicians;
  • use all available information on the patient's preferences and values to guide treatment decisions;
  • manage decision-making for unrepresented patients using a fair process that comports with procedural due process;
  • employ this fair process even when state law authorizes procedures with less oversight.
Figure

“Capacity is determined on a decision-by-decision basis. Patients with neurological diseases may be able to make simple decisions but not more complex decisions. Along with psychiatrists we have a role in advising ICU teams and families about which decisions a patient may have capacity to make and which they dont.”—DR. DAVID Y. HWANG

A Roadmap to Decision-Making

“This provides doctors and hospitals a roadmap for decision-making in cases when decisions are not time-sensitive,” said David Y. Hwang, MD, FAAN, associate professor in the division of neurocritical care and emergency neurology at Yale, who reviewed the paper for Neurology Today.

Dr. Hwang especially emphasized the need—underscored in the second policy recommendation—for a careful assessment of capacity, which may be especially critical in patients with neurological conditions. The ATS/AGS paper states: “With support, time, and good communication, some individuals who initially appear to lack capacity in fact may be able to make their own decisions....Too often, clinicians erroneously assess patients as lacking capacity to make their own treatment decisions.”

“Capacity is determined on a decision-by-decision basis,” Dr. Hwang told Neurology Today. “Patients with neurological diseases may be able to make simple decisions but not more complex decisions. Along with psychiatrists we have a role in advising ICU teams and families about which decisions a patient may have capacity to make and which they don't.”

He also echoed Dr. Rubin in noting that given enough time, someone can be found who is associated with the patient in some way, however tangentially, and can offer some guidance to clinicians. “When patients first come in, we may not even have a name for the patient, much less someone who might represent them,” he said. “But in my own anecdotal experience, after some time we do end up finding a family member or someone associated with the patient.”

Figure

“The take-home message is that decision-making for unrepresented patients is a complicated process that requires time, patience, and an effort to gather as much information as possible. Its a process that significantly benefits from utilizing a hospitals ethics committee, so the critical care clinician has the support they need navigating this significant challenge.”—DR. MICHAEL A. RUBIN

Dr. Hwang added that the principles and policy recommendations are important for institutions in the context of the COVID pandemic, which he said has “skewed hospitals and doctors toward a more paternalistic model and toward making more unilateral decisions rather than fewer.”

And Dr. Rubin noted that advance care planning—emphasized in the first policy recommendation—is especially critical for patients with COVID-19 in the ICU because deterioration of health requiring decisions about care and withholding of care can happen extremely quickly.

Dr. Rubin said the ethical goals and policy recommendations concisely and comprehensively synthesize principles that are discussed in the bioethical and critical care literature in a way that will help institutions develop their own policies.

“This is rooted in the transition medicine has made toward shared decision-making, where the physician offers a clinical recommendation and the patient or surrogate is part of the discussion. We have gotten so accustomed to that now that we don't know what to do when half of that equation isn't there.”

He added, “Most clinicians are well-meaning and will do what they think is best for the patient, but you can imagine situations where there is a risk when someone is time-pressured or not focused and will fail to consider what the patient might choose for themselves.”

Moreover, physicians or hospitals can err by inferring what a patient may want based on age or other socio-demographic factors. “When we know nothing about a patient, we have a tendency to assume that the patient would want what similar patients want,” said Dr. Rubin. “We need the humility to remember that each individual's choices are as unique as they are.”

“The take-home message is that decision-making for unrepresented patients is a complicated process that requires time, patience, and an effort to gather as much information as possible,” Dr. Rubin said. “It's a process that significantly benefits from utilizing a hospital's ethics committee, so the critical care clinician has the support they need navigating this significant challenge.”

Disclosures

Drs. Pope, Rubin, Hwang, and Im and reported no relevant disclosures.

Link Up for More Information

• Pope TM, Bennett J, Carson SS, et al Making medical treatment decisions for unrepresented patients in the ICU. An official American Thoracic Society/American Geriatrics Society policy statement https://www.atsjournals.org/doi/10.1164/rccm.202003-0512ST. Am J Respir Crit Care Med 2020; 201(10):1182–1192.