Families haunted by end-of-life decisions

The burden of making medical decisions for a loved one can cause distress and even post-traumatic stress disorder, according to a report published in the Annals of Internal Medicine.

When a patient is physically or mentally unable to make medical choices, his or her fate falls into the hands of others, usually family members or friends.  They ultimately choose whether to start dialysis, have a risky surgery or put a person on life support.

The prevailing logic is that family members know the patient best and can make the most appropriate medical decisions.

“We’ve been relying on surrogates,” said author David Wendler, who heads the Unit on Vulnerable Populations at the National Institutes of Health’s Department of Bioethics.  “We think how else are we going to do this when people can’t do it for themselves?  It turns out the number of patients who can’t make decisions are particularly high. Especially in the end of life when 50% of the patients can’t make those decisions.”

That leaves the family with heavy responsibilities.  In research interviews, family members agonized over the dilemma.  This decision haunted them months and even years later.

“They feel like they’re being asked to be the agent of the demise of someone they really care about,” Wendler said.  “Not surprisingly, that’s really stressful and hard.”

One respondent said: “I don’t want to kill. That’s the part that I agonized over a lot.”

Family members felt they let their loved ones die by removing life support.  Those who left patients on life support felt responsible for prolonging their suffering.

“In the paper, people said things like, ‘I wouldn’t wish being a surrogate on my worst enemy,’ and ‘I felt like I was the jury to sentence to death the person I loved most in the world.’ You read that, you can see how traumatic it was for them,” Wendler said.

After examining  40 studies, Wendler estimated that the about a third experienced substantial distress, another third felt moderate distress and less than 10% had a positive experience.  Because the various studies used different measures, it’s hard to give precise estimates, he said.

The people who did not feel scarred by the experience, usually expressed confidence that they knew what the patient would’ve wanted.

One respondent reported: “Thank God Mom and Dad had a living will made. I’m glad I was not the person who had to make that decision.”

Another said, “That’s why I basically have no regrets. I was carrying out her wishes.”

Without prior conversations or an advance directive, families may have a false confidence. A different study found that surrogates correctly predicted the patient’s preferences in only two-thirds of the cases.

Having an advance directive that specified the patient's treatment preferences significantly reduced family stress, the report found.