The American Thoracic Society and American Geriatrics Society has issued a new policy statement addressing decision-making for unrepresented patients in the intensive care unit (ICU).1
“This is an even more prevalent issue in clinical ethics, yet one with even less existing guidance. Guidance on this issue is urgently needed,” says Thaddeus Mason Pope, JD, PhD, the policy statement’s lead author.
These individuals 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. Yet we aren’t doing a very good job of protecting them from the risks of either undertreatment or overtreatment,” says Pope, director of the Health Law Institute and professor of law at Mitchell Hamline School of Law in Saint Paul, MN.
The policy statement recommends institutions prevent patients from becoming unrepresented in the first place by offering advance care planning. Conduct thorough capacity assessments and search for potential surrogates before assuming patients are unrepresented.
When making medical decisions, seek input from a diverse multidisciplinary committee as opposed to ad hoc decisions made by individual clinicians. Factor in everything that is known on the patient’s preferences and values when making decisions. Finally, use a fair process that comports with procedural due process, even when state requirements are less stringent.
Pope says ethicists should use this policy statement to benchmark their own institutional policies. These are important questions:
- How carefully does the hospital assess capacity?
- How hard does the hospital search for potential surrogates?
- How diligently does the hospital offer advance care planning?
The fairness of the decision-making process also should be scrutinized. “For example, can the attending authorize her own treatment plan?” Pope asks. “Or must there be vetting through a multiprofessional committee?”
There is a perceived lack of consensus on the best way to make decisions for unrepresented patients, says co-author Mark D. Siegel, MD. Clinicians struggled on whether to offer CPR, intubation, or mechanical ventilation. “Many critically ill patients can’t make decisions on their own behalf for a variety of reasons, including sedation, delirium, and chronic neurocognitive and psychiatric disorders,” says Siegel, director of Yale’s internal medicine traditional residency program.
When patients have a surrogate decision-maker, such as a spouse or other family member, the ICU team can turn to that person to make decisions on the patient’s behalf.
“But this option is not available for unrepresented patients, who are, by definition, vulnerable because they are ill and have no one to represent their wishes,” Siegel cautions.
The policy authors wanted to provide ICU clinicians with guidance on how to handle these difficult cases. “We clinicians are obliged to respect patient’s preferences when we make clinical decisions,” Siegel notes. “In general, this respect for autonomy takes precedence over other ethical considerations.”
Patients’ preferences supersede clinicians’ assumptions about which treatments are in the patient’s best interest (e.g., whether a patient should be resuscitated if he or she suffers a cardiac arrest). “Unfortunately, if the patient can’t exercise autonomy and has no surrogate to represent them, the concern would be that respect for the patient’s preferences will not be prioritized as it would when surrogates are available,” Siegel explains.
This means patients might receive treatments they never would have chosen. “This concern could become additionally problematic in populations that are already vulnerable,” Siegel warns.
This includes the homeless, the uninsured, and those belonging to racial and ethnic groups that have historically suffered from discrimination. The policy statement recommends ensuring a diligent search is made to find potential surrogates, assembling multidisciplinary teams to ensure diverse input, and ensuring due process in decision-making.
“Just by creating a policy, I think we may be able to raise awareness that these patients require extra consideration when making ethically challenging decisions,” Siegel says.
- 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. Am J Respir Crit Care Med 2020;201:1182-1192.