Less than half of the patients who underwent a risky heart surgery at one medical center completed advanced directives to guide their care in the event they could no longer articulate their wishes, according to a new study.
In addition to ensuring patients receive care that's in line with their wishes, the study’s senior author said advanced directives reduce the burden on family members who would otherwise make those decisions.
“It’s really hard on loved ones to make those decisions if there has been no planning,” said Dr. Paul Mueller, chair of general internal medicine at the Mayo Clinic in Rochester, Minnesota.
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Family members are often relieved when patients have already filled out an advanced directive, he said. “The patient has already articulated what he or she wants.”
There has been increasing attention in recent years toward encouraging people to make their end-of-life preferences known, including an annual National Health Care Decisions Day.
But researchers have found the message is only getting across consistently to patients with certain diseases or under certain circumstances, and even then the rules and paperwork are not always clear.
For the new study, Mueller and his colleagues focused on patients with a severe condition known as aortic stenosis that occurs when the main artery to the heart does not open all the way. The problem causes poor circulation and can lead to death.
The condition can be treated by opening the patient’s chest and replacing the artery, or with a less invasive procedure known as transcatheter aortic valve replacement (TAVR), which is often reserved for people not strong enough to have the full surgery.
In both cases, Mueller and his colleagues write in a research letter published in JAMA Internal Medicine that patients are at risk for death and other complications related to the surgery, such as stroke and heart rhythm problems.
Recent studies suggest about a third of people who undergo either procedure will die during the two years after surgery. The high death rate suggests many people will face difficult decisions following the procedures, Mueller said.
“We wanted to understand what kind of advanced planning people with severe disease have,” he said.
The study team looked at data from 251 patients who had TAVR performed at the Mayo Clinic between January 2008 and December 2012.
About 47 percent had advanced directives. Only about a third of those advanced directives addressed life-sustaining treatment, such as whether the patient wanted to be resuscitated or to be fed through a tube.
“Fortunately, most patients who had (advanced directives) listed surrogate decision makers in their (advanced directives),” the researchers wrote.
In the study group, most people with a designated surrogate to make healthcare decisions chose a child or spouse and 23 percent chose friends or other family members.
Unlike other studies, Mueller said, they did not find differences in who did and did not have advanced directives based on other health problems, such as heart attacks, high blood pressure and stroke.
He said it could be that they did not have enough people included in this study to pick up on those differences.
Each state differs in how they require advanced directives to be filed, but Mueller said barriers – such as the complexity of the documents – should be eliminated as much as possible.