People who have to make treatment decisions for a seriously ill family member may suffer emotional consequences as a result, according to a study published Monday.
"We found a strong suggestion that it has a profound effect, and unfortunately it's often a negative one," said lead researcher Dr. David Wendler of the National Institutes of Health.
At some point, nearly all critically ill people will become unable to make their own decisions about their medical care. In those cases, decisions — including the choice to continue or withdraw life support — either go to the next of kin by default, or to a healthcare "proxy" the patient has named in legal documents known as advance directives.
In the new study, published in the Annals of Internal Medicine, researchers reviewed 40 previous, small studies on the emotional effects those decisions can have.
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, Wendler's team found, family members felt anxiety, guilt, or doubt about whether they had made the right choice.
Across the studies, at least one-third of decision-makers reported some type of emotional burden. And in some cases, those effects were reported months or even years after the fact.
But none of that should discourage people from naming a healthcare proxy, according to Wendler.
In fact, he said, family members in these studies 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, Wendler said.
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, you want to be put on a ventilator if you cannot breathe on your own, or if you want doctors to attempt resuscitation if your heart stops.
If your family knows what you prefer, Wendler said, that could ease some of their emotional stress.
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.
But few people do fill out advance directives; it's estimated that about 30 percent of Americans have a living will, for instance.
"We've been trying to get people to complete advance directives for 20 years," Wendler noted.
Part of the reluctance, he said, could be because people usually see end-of-life planning as something that will only affect them.
"It is for you," Wendler said. "But it's not only for you. It's also for your family."
That said, more advance planning is unlikely to eliminate the emotional toll that treatment decisions can take, according to Wendler.
Better communication between doctors and families is important, he said. In a busy intensive care unit, for example, families may be overwhelmed by information from different members of their loved one's medical team. Designating one provider as the "contact person" for the family might help, Wendler said.
As far as advance directives, a common misperception is that you have to involve a lawyer, Wendler noted. But people can get the documents for free; state-specific forms can be downloaded from the National Hospice and Palliative Care Organization website, for example.
You can then take the documents to your doctor to ask any questions, Wendler said.
All of that is especially important if you have a terminal illness, but experts recommend that younger, healthy people also consider what they'd want if the unexpected happened.
Even if you do not fill out an advance directive, Wendler said, you can talk with your family about what you think you'd want.
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