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Analysis

Patients' End-of-Life Surrogates Aren't as Ready as They Think

By Christopher Cheney  
   December 04, 2018

Selection of a surrogate for end-of-life decisions is just the starting point for effective advance care planning.

Patients' end-of-life surrogates are overly confident in their readiness to make crucial decisions for their loved ones, recent research shows.

Ill-prepared surrogates at the end of life are a vexing challenge for health systems and hospitals, with care teams often facing a heart-wrenching struggle to determine appropriate care plans in the absence of clear direction. Several studies have shown that surrogates are not well-acquainted with patient preferences, but patients believe that their loved ones already know their wishes.

The lack of surrogate knowledge takes a heavy toll on loved ones when life-or-death decisions arise, researchers wrote recently in JAMA Internal Medicine. "Substantial proportions of surrogate decision makers who have made end-of-life decisions experience burden, expressing stress, guilt, and doubts about having made the right decision."

The researchers focused on decisions related to three health states that could result from treatment of serious conditions: physical disability, cognitive disability, and severe pain. The health states were rated as acceptable or unacceptable by 349 patients and their surrogates.

Although 75% of surrogates said they were extremely confident of their loved ones' wishes, only 21% of surrogates knew the patients' ratings for all three health states.

"Surrogates' confidence in their ability to make treatment decisions based on knowledge of patients' ratings of the acceptability of health states resulting from treatment of serious illness far exceeded and was not associated with their actual knowledge of these ratings," the researchers wrote.

The determination is consistent with the results of an earlier study, which found  79% of surrogates rated themselves as confident or very confident, but only 35% knew their loved ones' wishes.

Preparing surrogates
 

The lead author of the research told HealthLeaders that health systems and hospitals can help prepare surrogates for end-of-life decisions.

"The first essential step is for these organizations to recognize the need to include surrogates in the process of advance care planning. Without this recognition, if any planning happens at all, it is done only with the patient. Unfortunately, healthcare organizations can think their work is done when the patient formally names a surrogate," said Terri Fried, MD, of the VA Connecticut Healthcare System in West Haven, Connecticut.

Once surrogates have been included in advance care planning, programs and tools can facilitate conversations about end-of-life care, she said.

"Respecting Choices is an intensive program utilizing a specially trained facilitator to conduct conversations with patients and their surrogates. Because it requires the commitment of resources, it is probably best suited for patients with advanced illness and a high likelihood of needing a surrogate decision maker in the near future," Fried said.

Christopher Cheney is the senior clinical care​ editor at HealthLeaders.


KEY TAKEAWAYS

Unprepared surrogates pose a major challenge for care teams, who face making treatment decisions without clear direction.

Surrogates struggle with guilt, stress, and doubt when they make decisions without knowledge of their loved ones' wishes.

Health systems and hospitals can help equip surrogates to play their role.

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