NEW YORK (Reuters) - People who have to make treatment decisions for a seriously ill family member, including whether to continue or withdraw life support, may suffer emotional consequences as a result, according to a study.
At some point, nearly all critically ill people will become unable to make their own decisions about medical care. In those cases, the decisions fall to the next of kin by default, or to a healthcare “proxy” the patient has named in legal documents known as advance directives.
“We found a strong suggestion that it (making decisions) has a profound effect, and unfortunately it’s often a negative one,” said David Wendler of the U.S. National Institutes of Health, who led the research team.
For the study, published in the Annals of Internal Medicine, researchers reviewed 40 previous small studies on the emotional effects of such healthcare decisions.
In some studies, a small number of decision-makers — most often a first-degree relative — said the experience was positive, because they had been there to support their loved one.
But more often, family members felt anxiety, guilt or doubt about whether they had made the right choice.
Across all studies, at least one-third of decision-makers reported some type of emotional burden, in some cases months or even years after the fact.
But Wendler said none of that should discourage people from naming a healthcare proxy. In fact, family members were less likely to report negative emotional effects when they knew their loved one’s preferences for end-of-life care.
“If anything, this should encourage more people to do” advance directives, he added.
One type of advance directive is a “living will,” which lets people spell out the types of life-prolonging measures they do or do not want — whether, for instance, they want to be put on a ventilator if they cannot breathe on their own.
In one U.S. study of 105 people who made treatment decisions for a terminally ill person, two-thirds reported moderate to severe stress at the time. But significantly lower stress levels were seen in cases where an advance directive was in place.
It is estimated, however, that only about 30 percent of U.S. citizens have a living will, for example — perhaps, Wendler said, because people don’t consider that this sort of thing might help their families.
“We’ve been trying to get people to complete advance directives for 20 years,” he said.
“It is for you, but not only for you. It is also for your family.”