For Surrogate Decision-Makers, Psychological Distress Is Common

By Stacey Kusterbeck

Many surrogate decision-makers struggle with making decisions on life-sustaining treatments for a loved one with serious illness. Clinicians and ethicists typically encourage surrogates to make these decisions based on an understanding of the patient’s values and preferences, using substituted judgment. “It is hard for people to make good decisions when they are in distress. Clinicians and ethicists need to be aware of just how challenging this process can be for the family members asked to make these decisions,” says Darin Zahuranec, MD, an assistant professor of neurology at University of Michigan Medical School.

As the population ages, and more individuals survive severe illnesses, there will be a greater role for caregivers, says Lewis B. Morgenstern, MD, a professor of neurology, epidemiology, emergency medicine, and neurosurgery at the University of Michigan Medical School and School of Public Health.

Morgenstern, Zahuranec, and colleagues wanted to explore what barriers surrogates face when attempting to apply patient values to medical decisions after a serious stroke if the patient is not able to speak for him- or herself. In one study, the researchers surveyed 301 surrogates who had made decisions about life-sustaining treatments between 2016 and 2020 to assess post-traumatic stress, at the point of discharge from the hospital and again at three-, six-, and 12-month intervals.¹ Between 17% and 28% of surrogates reported high scores on measures of psychological distress. The study’s findings revealed that psychological distress was worse in Mexican Americans compared to non-Hispanic whites, found the researchers.

The researchers conducted another study examining barriers to surrogates applying patients’ values to decisions on life-sustaining treatments.² The researchers interviewed 42 surrogates about six months after a family member’s hospitalization for stroke. The surrogates reported these barriers: struggling to apply the patient’s values and preferences, feeling guilt or burden even if they knew a decision reflected the patient’s values or preferences, and having never discussed what the patient wanted. Mexican American surrogates were more likely to report feeling guilt or burden and more likely to report spending time with family as an important priority, compared to non-Hispanic white participants.

Some surrogates reported having prior conversations with the patient about their wishes. However, surrogates later found that it was insufficient to guide decision-making during the actual hospitalization. “Few people have advance care planning conversations,” notes Zahuranec. “Our data would suggest that even when these conversations had occurred, they were not always helpful to the surrogates in guiding the types of decisions that needed to be made in the setting of an acute serious illness like stroke.”

Traditionally, physicians tend to focus on the patient as their primary responsibility. “However, with the increasing evidence of how surrogates can face adverse outcomes, we may need to expand our scope to consider the impact on the entire family,” says Zahuranec. For clinicians, Zahuranec suggests these steps are needed:

• Helping surrogates to translate prior vague statements that a patient made into an understanding of what is the best decision for that individual;

• Approaching surrogates with empathy and understanding;

• Obtaining education on best practices for basic serious illness communication.

The health system needs to find better ways to care for caregivers, asserts Morgenstern. When patients are sick, medical teams are appropriately focused on the patient. “Compassionate members of the team also reach out to make sure grieving family members are well, but that may not be sufficient. There are growing family-centered care programs at many hospitals. Hopefully, that will improve this situation,” says Morgenstern.

F. Daniel Davis, PhD, HEC-C, a professor of bioethics and associate chief of clinical ethics at Geisinger Health in Danville, PA, offers these strategies to mitigate surrogates’ psychological distress:

• Clinicians can make every effort to understand the preferences and values of the patient. “This is an important first step,” underscores Davis.

• Clinicians can explore any conflicts between the patient’s desires and the surrogate’s views and attempt to resolve them.

• Clinicians can educate surrogates about their role. “The surrogate’s role is to advance the patient’s known preferences and values, and if they are not known, working to ensure decisions are aligned with the patient’s best medical interests,” explains Davis.

• Clinicians can normalize the anticipatory grief that surrogate decision-makers may feel in participating in decisions entailing the withholding or withdrawing of life-sustaining treatment. “Clinicians can respond with active listening and empathy,” says Davis.

• Clinicians can adequately inform surrogates of diagnostic, prognostic, and therapeutic information to aid in decision-making.

“Ethicists can help to facilitate all of these steps,” says Davis. “Ultimately, skilled, compassionate, honest communication is the priority.”

In Davis’ experience, good advance care planning can mitigate the burden faced by surrogate decision-makers. Patients’ advance care planning sometimes is unclear, resulting in surrogates having to step in and make treatment decisions on behalf of the patient. In other cases, no one knows if the patient has completed advance care planning, and no documentation or documents can be located. At Geisinger, all advance care planning notes and documents are located in one place in the electronic health record. “It is the ultimate ‘source of truth,’ especially if the patient loses capacity,” says Davis.

Clinicians also can implement reliable systems to identify whether patients at key points in the hospitalization, such as admission and discharge, have completed advance care planning. Clinicians can verify if patients have advance care plans or documents (such as powers of attorney, living wills, Medical Orders for Life-Sustaining Treatment forms or Provider Orders for Life-Sustaining Treatment forms). If so, clinicians can confirm that the information accurately reflects the patient’s current wishes. For patients without any documents, it is an opportunity for clinicians to initiate the advance care planning process.

Conducting advance care planning with both patients and surrogate decision-makers present is ideal. “This is a good strategy to prevent future conflict with a surrogate,” says Davis.

REFERENCES

1. Morgenstern LB, Becker CJ, Lank R, et al. Long-term psychological distress among surrogate decision makers for Mexican American and non-Hispanic white patients with severe stroke. Neurology 2024;102:e207960.
2. Lank RJ, Morgenstern LB, Ortiz C, et al. Barriers to surrogate application of patient values in medical decisions in acute stroke: Qualitative study in a biethnic community. Neurocrit Care 2024;40:215-224.