Survey data identify groups with differing priorities

Surrogate decision makers who were asked about priorities and goals of care in hypothetical intensive care scenarios fell into distinct groups, a U.S. population survey showed.

“Although surrogate decision makers for patients with severe acute brain injury are concerned with respecting patient wishes and minimizing suffering, certain groups highly prioritize other specific decisional factors,” wrote David Hwang, MD, of Yale University and colleagues in Neurology. “These data can help inform future interventions for supporting decision makers.”

Depending on the circumstance, these other factors included family consensus, prognostic accuracy, paying for long-term care, and religious beliefs.

The findings stem from an online survey Hwang and his team conducted with a nationally representative population of 1,588 adults age 30 and older in February 2016. Survey completion rate was 44.6% and the researchers weighted the data to mitigate nonresponse bias.

In the survey, participants acted as a surrogate for a hypothetical patient with severe acute brain injury and were randomized to one of two prognostic scenarios: the patient likely being left with a range of severe functional disability, or the patient remaining in a vegetative state. Each cohort prioritized 12 decisional factors.

In the severe disability cohort, researchers identified four groups of decision makers. Each group ranked, in some order, the following four priorities among their top five: “doing what my loved one would have wanted,” “wanting my loved one to experience as natural and comfortable a death as possible,” “worrying that my loved one would suffer if kept alive with tubes,” and “worrying that my loved one would suffer while dying if tube feeding and IV fluids were stopped.” Their fifth priority distinguished their unique concerns:

  • Group 1: “Worrying that my loved one is too old to be kept alive and severely disabled” (n=272, 34.4%).
  • Group 2: “Getting all of my family members to agree on what to do” (n= 216, 26.4%).
  • Group 3: “The doctor’s opinion that my loved one would not improve is wrong” (n=169, 20.7%).
  • Group 4: “Paying for long-term care for my loved one” (n=135, 18.6%).

In the vegetative state cohort, researchers identified five groups of decision makers. Four of the five groups had similar concern profiles to the severe disability groups, but an additional group prioritized religious concerns:

  • Group 1: “The doctor’s opinion that my loved one would not improve is wrong” (n=226, 29.0%).
  • Group 2: “Getting all of my family members to agree on what to do” (n= 176, 21.1%).
  • Group 3: “Worrying that my loved one is too old to be kept alive in a vegetative state” (n=167, 20.7%).
  • Group 4: “Acting according to my religious beliefs” (n=138, 15.8%).
  • Group 5: “Paying for long-term care for my loved one” (n=89, 13.4%).

In both the severe disability and vegetative state cohorts, the group with prognostic doubts was most likely to choose life-sustaining therapy — 31.1% and 17.5%, respectively.

“The finding that significant proportions of participants in both versions of the survey were concerned about the medical team’s prognostic accuracy is consistent with the literature that many ICU families consider numerous sources outside of clinician opinion in formulating personal impressions of prognosis,” the authors pointed out.

“How best to address surrogates’ doubt regarding clinicians’ prognostic estimates is a complicated problem in neurology, but it is possible that providing a range of best and worst possible outcomes in such discussions may help take the focus of the surrogate off of a concern regarding the clinician’s ability to predict an exact future and direct the surrogate toward working through other important concerns,” they added.

“This work takes an important step forward toward creating a framework in which to view surrogate decision making,” observed Nicole Gonzales, MD, of McGovern Medical School in Houston, Texas and Alexandra Reynolds, MD, of Mount Sinai Hospital in New York City, in an accompanying editorial.

“In all disease processes, identification of patterns or categories helps us to develop targeted treatment,” Gonzales and Reynolds wrote. “The efforts in this study represent an evidence-based approach to end-of-life by obtaining information from a representative U.S. population.”

Though the patterns identified here may not turn out to be the ones that matter, “we won’t know until we start looking,” they added. “Hwang et al. have provided a reference point. We have the awesome privilege of guiding our patients and families through the dying process. It’s time to apply as much scientific rigor to dying as we do to preventing and treating disease.”

Limitations include the lack of real-world data: an online survey does not fully simulate the experience of making these kinds of decision in a limited amount of time. However, more than a third of survey participants (36.9%) indicated that they had made similar decisions at some point in the past.

  1. Patterns of surrogate decision-making for a hypothetical patient with severe acute brain injury suggested four different groups of decision-makers if the prognosis was severe disability, and five groups if the prognosis was vegetative state.

  2. All surrogate decision makers were concerned with respecting patient wishes and minimizing suffering, but depending on the circumstance, certain groups highly prioritized other factors including family consensus, prognostic accuracy, paying for long-term care, and religious beliefs.

Paul Smyth, MD, Contributing Writer, BreakingMED™

This study was funded by an American Brain Foundation Practice Research Training Fellowship, a Neurocritical Care Society Research Training Fellowship Grant, and a philanthropic grant from the Apple Pickers Foundation in Westerly, RI. Research was also supported by the Rheumatology Research Foundation Innovative Research Grant program and the National Institute of Arthritis and Musculoskeletal and Skin Diseases, as well as the National Heart, Lung, and Blood Institute.

The researchers reported no disclosures. The editorialists reported no disclosures.

Cat ID: 130

Topic ID: 82,130,570,130,474,192,925