Communicate With Your Caregivers Before You Can’t

An “advance health care directive,” also known as a living will or advance directive, provides a legal mechanism for individuals to specify what actions should be taken for their health in the event that they are no longer able to make such decisions due to illness or incapacity.

These instructions can prevent the need for anyone to “guess” what to do. By appointing a person or persons in this capacity, individuals can let their physician, family and/or friends know their health care preferences, including the types of special treatment they may want at the end of life, their desire for diagnostic testing, surgical procedures, cardiopulmonary resuscitation, and/or organ donation.

While many people go so far as to name a medical surrogate, too often they fail to provide adequate information about their health care preferences. A recent publication in the Annals of Internal Medicine concludes that the failure to provide these specific instructions to a medical surrogate in advance may lead to years of emotional distress.

In identifying several stressors that accompany the role of medical surrogate, the authors reviewed 40 studies. First on the list of stressors, according to the study, was being unsure of a patient’s preferences.  According to the authors: “We found that patients might also be encouraged to document their treatment preferences as a way of reducing the burden on their surrogates.” The nonprofit Engage with Grace has a LIST of some questions that may assist in this process, before the medical surrogate must make uninformed decisions.

Other stressors included uncertainty with a prognosis, discomfort with the hospital environment, poor communications with the health care professionals, insufficient time, disagreements with the medical staff, and feelings of uncertainty or guilt.

In conclusion, the study notes: “Making treatment decisions has a negative emotional effect on at least one third of surrogates, which is often substantial and typically lasts months (or sometimes years). Future research should evaluate ways to reduce this burden, including methods to identify which treatment options are consistent with the patient’s preferences”