Decision aid helps families, clinicians communicate about care decisions

Surrogate decision-makers faced with the difficult task of overseeing loved ones' medical care may find help thanks to a new decision aid aimed at patients with prolonged mechanical ventilation. According to a study conducted by researchers in North Carolina, Pennsylvania and Washington who developed and tested the aid, surrogates reported the aid significantly improved the often daunting decision-making process.

The study results will be presented at the ATS 2011 International Conference in Denver.

The decision aid was developed specifically for surrogate decision makers of patients who require for extended periods, a condition known as prolonged mechanical ventilation (PMV). Each year, about 300,000 U.S. patients are placed on prolonged mechanical ventilation. About 50 percent of those patients die within a year, typically after spending 75 percent of their final days in . These patients have exceeding $20 billion each year in the United States.

"For patients at risk for PMV, challenging decisions must be made about whether to continue a course of or whether to emphasize comfort at the possible expense of survival," said study author Christopher Cox, MD, an assistant professor of medicine and co-director of the medical ICU at Duke University Medical Center. "The burden of life support decision-making rests on family members and other surrogate decision-makers because of patients' severe illnesses. However the quality of this decision-making process is severely deficient."

Dr. Cox said the communication deficit between clinicians and surrogates in the decision-making process has several causes, including difficulty explaining a complicated and its management options to surrogates, particularly in a multi-provider, environment.

"This poor communication quality leads to a dramatic degree of discordance between surrogates and clinicians for expected ," Dr. Cox noted. "These deficiencies also may lead to decisions that are inconsistent with a patient's values, prolonged life support that is extraordinarily costly and ineffective, and psychological distress among surrogates."

Initially designed in a written format, the decision aid integrates clinical data, treatment goals and individualized prognostic estimates.

"The decision aid we developed was designed specifically for the surrogates of patients at risk of PMV to assist them in this complicated process," said Cox.

For their study, the researchers enrolled 30 surrogates of patients at risk for PMV who were being treated in medical and surgical ICUs at three North Carolina medical centers, and divided them into two groups: 20 surrogates who used the decision aid and 10 control surrogates who relied on usual care.

According to their results, surrogates who used the decision aid experienced greater improvements in the agreement between surrogates and both physicians and nurses about expected patient survival , decisional conflict, and both quality of communication and medical comprehension score, compared to controls. Those who used the decision aid also reported a 31 percent decrease in uncertainty about preferred treatment goals and were 44 percent more likely than controls to report that they engaged physicians in discussing long-term patient outcomes. Additionally, decision-aid patients had shorter hospital lengths of stay yet similar mortality to control patients.

"These data provide initial evidence that the PMV decision aid could help to improve surrogate-clinician decision-making quality and may reduce health care utilization," Dr. Cox said.

The results could have an important impact in ICUs around the world, he added.

"We hope that the decision aid can be used to complement, not replace, the physician-family interaction - and in this age of digital information, empower by providing them with useful information to make better decisions," he said.

Since the initial study involved a small sample of and was confined to two medical centers, Dr. Cox said future studies will need to involve larger patient populations and more medical centers to confirm the results.

Additional studies are under way to test both web-based and iPad-based versions of the decision aid, he said.

"We hope these digital versions will allow the decision aid to be widely disseminated to other providers worldwide," Dr. Cox said. "The potential target audience is both large and deserving."

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