The research found that surrogates are virtually split when it comes to how much guidance they want to receive from physicians in making end-of-life medical choices on behalf of critically ill patients, according to lead author of the paper, Douglas B. White, of the University of Pittsburgh Medical Center.
"In fact, what we found was that, while a slight majority did prefer doctors to help them make those difficult decisions, many felt that it was a decision they wanted to make without guiding input from doctors other than an explanation of the options," said Dr. White.
At the end of life, critically ill patients frequently require surrogates to make their medical decisions for them, who, in the absence of advance directives from the patient, must rely on what they believe would have been the patients' desires. "This puts an enormous emotional burden on surrogates; not only are they losing a loved one, they also may feel burdened by guilt about allowing the patient to die." said Dr. White. "It was therefore assumed by some in the medical community that a doctor's dispassionate advice could reduce some of that burden and help surrogates make a good decision with less second-guessing themselves. However, there was little or no research to support this assumption."
Dr. White and colleagues set out to test that assumption, recently formalized as a recommendation by a number of critical care societies, by asking surrogates of critical care patients to watch and respond to two videos. The videos depicted a hypothetical ICU "family conference" in which surrogates must decide whether to continue or withdraw life support from a loved one who has a small chance of survival with continued intervention, but a high likelihood of severe functional impairment in the long-term, including dependence on a ventilator. Both videos were identical in all ways except one: in one version, the doctor says that the most important thing is for the surrogate to "make the choice that's consistent with [the patient's] values," but states that only the surrogate could make that decision; in the alternate version, the doctor offers his opinion that the patient would likely not have wanted to continue aggressive treatment given the likely outcome.
A total of 169 surrogates who were recruited from four ICUs at the University of California San Francisco Medical Center to watch the films in randomized order and respond to it. The researchers used a multi-method analysis to code the responses and validated their analyses with the surrogates themselves to ensure an accurate and complete qualitative assessment of the data.
To their surprise, Dr. White and colleagues found that only a slight majority, 56 percent, of surrogates expressed a preference for the version in which the physician offered an opinion to limit life support. A slight minority, 42 percent, preferred no recommendation, and the final two percent had no preference.
"This is an important article that has changed my clinical practice," said J. Randall Curtis, M.PH., M.D., president of the American Thoracic Society and Professor of Medicine Pulmonary and Critical Care Medicine Section Head, Harborview Medical Center in Seattle, WA"I had previously assumed that almost all families would want physicians' recommendations, but these findings indicate that there is no such consensus among surrogates. I suspect that physicians can do more harm by withholding a recommendation that is desired than by providing a recommendation that is not desired, but this study suggests we should ask rather than assume."
Just over half (51 percent) of the surrogates expressing a preference for receiving their doctors' advice believed that it was the doctor's role to provide that opinion, whereas nearly four of five (79 percent) who preferred not to receive the advice saw it as overstepping.
"A very important part of American bioethics is respecting patient's choices," said Dr. White. "The family's most important job when acting as a surrogate decision maker is to give voice to the patient's values. I think our research highlights that the physician's job is to be flexible enough and insightful enough to respond to the surrogate's individual needs for guidance.
"It is rare that a research paper changes clinical practice, and I think this one will," said Dr. Curtis.
Published in the August 15 issue of the American Journal of Respiratory and Critical Care Medicine.