Informed consent usually refers to conversations between patients and clinicians. It also is necessary when surrogate decision-makers are involved.
“Improvement of the informed consent process for surrogates is achievable by emphasizing the healthcare decision is being made on behalf of this patient,” says Gavin Enck, PhD, a clinical ethicist at OhioHealth.
There are two standard models of judgment for surrogates. One is substitute judgment (i.e., making a decision as the patient is likely to have made).
“The central ethical question is whether a surrogate’s judgment for consenting or refusing a medical intervention on behalf of a patient is consistent and congruent with this patient’s preferences, interests, and values,” Enck explains.
Another model is the best interest standard (i.e., making a decision that is in the best interest of the patient). “The informed consent process could be started by clearly stating at the onset that the surrogate is not being asked to make a decision for this patient,” Enck offers.
Instead, the surrogate must indicate which healthcare decision best honors the patient’s values and commitments. But surrogates might not know what those are. “The process can be flawed when a surrogate is appointed by a patient, but the patient never has a serious discussion with them regarding their own preferences and values,” says G. Kevin Donovan, MD, MA, director of the Pellegrino Center for Clinical Bioethics at Georgetown University Medical School.
In other cases, it is clear the patient would have wanted to withhold or withdraw life-sustaining interventions, but the problem is the surrogate is incapable of making those hard decisions.
Erica K. Salter, PhD, an associate professor and PhD program director of healthcare ethics at Saint Louis (MO) University, says the “known wishes” standard (i.e., basing decisions on oral or written advance directives communicating a patient’s treatment preferences) is challenging for a few reasons.
First, not too many people complete advance directives in the first place. Even if they do, people cannot always predict future treatment decisions well enough to give specific enough guidance. “Advance directives are difficult to interpret and apply to specific clinical situations,” Salter notes.
Completed advance directives are not always accessible at the right time, and surrogates might not know what they contain.
“As it turns out, patients rarely discuss treatment preferences with family members,” Salter observes. “Perhaps as a result, proxy decision-makers are typically no better than the flip of a coin at predicting patient preferences.”
Surrogates also might not be good at predicting a patient’s quality of life, either. Clinicians might worry surrogates cannot separate their own emotions from the decision at hand, or make decisions driven by guilt or conflicts of interest. “These expectations may be unfair to surrogates by setting an unrealistic standard for the ‘ideal’ surrogate, one that is not allowed to have their own complex psychological and emotional response to a loved one’s critical illness,” Salter explains.
Ethicists can help by inviting surrogates to share their own feelings, thoughts, and concerns about the situation, and acknowledging the immense difficulty of the situation. To fulfill their role, surrogates need extended, multiple conversations about goals of care and treatment options; enough time to process new information; affirmation of their emotional responses; and guidance on how to apply the patient’s wishes to a specific clinical decision. “Surrogate decision-makers should be viewed as partners, not adversaries,” Salter stresses.