Leaving All Your Big Medical Decisions to Your Family Isn’t Very Nice
The point of naming a medical surrogate is to have someone around to express your preferences about care when you can’t. But not providing surrogates with enough information ahead of time can cause them emotional distress that may last for years.
That, at least, is the finding of a review of existing literature on the impact on surrogates, most of them family members, of making treatment decisions. The 40 papers analyzed in the review,published in the Annals of Internal Medicine, aren’t perfect, the authors say right up front. Many of the study populations weren’t representative of the general population, for example, and there was sometimes a big time delay between when the decisions were made and when the study was conducted.
That said, the authors write they were able to identify several stressors that go along with being a surrogate, some which can be prevented or alleviated and others that are tougher to deal with. First on the list: being unsure of a patient’s preferences. Advance directives provide one possible solution, write the authors, who are from the National Institutes of Health and the University of Zurich.
While advance directives are often highlighted as a way to guide your own care, “we found that patients might also be encouraged to document their treatment preferences as a way of reducing the burden on their surrogates,” the authors write. Here are some questions helping you to organize your thoughts on this topic, from the nonprofit Engage With Grace, which we’ve written about before.
While those questions are tilted towards end-of-life decisions, a few of the papers in this new analysis covered surrogates making placement decisions, such as moving someone with Alzheimer’s to a special care unit.
Other stressors identified by the review authors were uncertain prognosis (a tough one to address), discomfort with the hospital environment, decision-making logistics, poor communication by clinicians, insufficient time, conflict with clinicians and family, a sense of sole responsibility and uncertainty or guilt over decisions.
At least a third of surrogates experienced a negative emotional burden due to making decisions, and those negative effects were “often substantial and typically lasted months, or in some cases, years,” the study authors write.