Recently, researchers interviewed 25 healthcare, social service, and legal professionals who worked with unrepresented adults — those who lack capacity to make medical decisions and have no identified surrogate. Participants listed prioritizing autonomy, varying safety thresholds, distributing resources fairly, and the moral toll on stakeholders as ethical challenges.1
Adults who have lost (or perhaps never had) decision-making capacity and do not have either an advance directive or an identifiable, capable, and willing surrogate “are some of the most marginalized and at-risk members of society,” says Margaret R. McLean, PhD. “They are, arguably, our most vulnerable patients.”
The decision-making process assumes that patients can make treatment decisions, relying on their own reasoning, values, and choices, says McLean, associate director and director of bioethics at the Markkula Center for Applied Ethics at Santa Clara (CA) University. Failing this, clinicians assume a loving family member or caring friend will step in to make decisions on the person’s behalf.
“But what happens when there is no identifiable surrogate decision-maker, no loving family, no caring friend, no court-appointed guardian?” McLean asks, adding that medical decision-making then becomes a problem that is “difficult, if not impossible, to solve.”
Clinicians may have little or no knowledge of the person. “A large number of people and opinions are involved, including the medical team and administrators — but notably, not the patient,” McLean observes.
The economic burden is large if hospital length of stay is prolonged due to the lack of a decision-maker. “Medical decisions for these patients are often matters of life and death,” McLean says.
What is needed, according to McLean, are “ethically informed policies that structure decision-making in a way that is consistent, transparent, workable, timely, deliberative, and in the best interest of the patient.”
Years ago, the Santa Clara County Medical Association’s bioethics committee developed a policy on healthcare decisions for incapacitated patients without surrogates. A version of this policy has since been adopted by 10 hospitals in the region. The policy’s goals are twofold:
- to make and effect healthcare decisions in accordance with a patient’s best interest, taking into consideration the patient’s personal values and wishes to the extent that these are known;
- to establish uniform procedures for medical decision-making for unrepresented patients.
In cases where there is no valid advance directive, valid POLST, or willing and capable surrogate, the policy empowers the ethics committee to act as the decision-maker. “Acting as the surrogate in this particular instance importantly changes the role of the ethics committee from advisory-only to that of decision-maker,” McLean says.
The ethics committee provides timely decision-making independent of, but informed by, the attending physician and members of the medical team. “Ethics committees are, by design, multidisciplinary and able to weigh both medical and nonmedical considerations in determining the best interest of a particular patient,” McLean observes, adding the committee approach means the decision rests on many shoulders, not one individual clinician’s.
“It extends the practice of shared decision-making to unrepresented patients,” McLean says.
The policy also allows time and resources for social workers to search diligently for a surrogate decision-maker. Family members have been located in far-flung locations including Canada, Mexico, and India. “This often results in more information and, at times, a willing and grateful surrogate decision-maker,” McLean says.
- Verma A, Smith AK, Harrison KL, Chodos AH. Ethical challenges in caring for unrepresented adults: A qualitative study of key stakeholders. J Am Geriatr Soc 2019;67:1724-1729.