by Craig Klugman, Ph.D.
In the 1979 novel Sophie’s Choice by William Styron, the reader meets a Holocaust survivor who was forced in the camps to choose which of her two children would die immediately. Making the choice led to a life of alcoholism, depression, and self-destructive behavior. One interpretation of this novel, later made into an Academy Award winning film (1982), is that having choose whether a loved one lives or dies is a spirit-wrenching decision.
And yet, everyday, health care providers and bioethicists ask legally appointed health care power of attorneys and other designated surrogates to decide whether an incapacitated patient has surgery, receives a feeding tube, is resuscitated, or is intubated. One metanalysis of 40 studies, showed that over one-third of surrogate decision-makers experienced a “negative emotional burden as the result of making treatment decisions.”
Not only can surrogate decision-making harm the surrogate, but it also turns out that they are not very good at choosing what the patient would want. To test whether patients and surrogates would make the same choices, several studies have conducted interview studies surrounding specific scenarios. The “patient” and “surrogate” are given a scenario and questioned separately. Their answers are correlated to see if there is agreement. Obviously this is a very artificial set up, but asking incapacitate patients who need a surrogate about agreement in choices is fairly difficult (if not impossible) to do. One study showed that there was good correlation in stroke treatment but bad correlation on research participation. “The degree of surrogate agreement is dependent on the type of decision being made.”
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.