DETROIT - More than 95 percent of patients treated in an Emergency Department mistake their emergency contact as the designated medical decision maker for end-of-life care, according to a new study by Henry Ford Hospital in Detroit.
The study is being presented Wednesday at the 20th International Congress on Palliative Care in Montreal.
Erin Zimny, M.D., a Henry Ford Emergency Medicine and Palliative Care physician and a study co-author, attributes the misunderstanding to health care practitioners routinely asking patients for their emergency contact information without explaining what that information really is and means.
As a result, practitioners are reinforcing the emergency contact as "having more importance" than the medical decision maker in an advance directive, Dr. Zimny says.
"What happens is a patient in respiratory distress or heart failure is too sick to tell us what they want, and when you look up their information in the medical record, most of the time nothing is documented," Dr. Zimny says. "So we end up doing things in the most invasive way to keep them alive."
In 1991, the Patient Self-Determination Act was enacted to protect patients from unnecessary suffering, family hardship and inappropriate use of unlimited resources and requires hospitals to inform each patient about their right to a natural death.
Despite the importance of advance directives for all adults that describe their preferences for end-of-life care, completion rates are low. A 2013 study in the American Journal of Public Health found that while more than 60 percent of adults 18 and older wanted their end-of-life wishes to be respected, only about a third of them had completed an advance directive.
Henry Ford researchers sought to determine whether there was a correlation between the role of an emergency contact and advance directive. At various entry points into the health care system, patients are repeatedly asked to provide emergency contact information even though the health care industry doesn't universally define what that is.
For its study, researchers surveyed 308 patients who were treated in Henry Ford's Emergency Department in Detroit between December 2012 and April 2013. Of that number, 34 patients had an advance directive but only half of them provided a copy of it to their primary care physician.
Highlights of the survey:
- 99 percent said their emergency contact should be able to come to the hospital if needed.
- 97 percent of patients said they wanted their emergency contact to notify important family members if they were sick and could not do so.
- 97 percent of patients said their emergency contact should know what type of care they would want if they could not voice it.
- 95 percent expected their emergency contact should be able to tell the medical team what their wishes were if they could not.
When asked why they chose their emergency contact:
- 80 percent of patients said the emergency contact was the best way to get in touch with them.
- 43 percent said they were the designated medical decision maker.
Dr. Zimny says health literacy, which is one reason cited for low advance directive completion rates, did not play a role in their study.
"We're using an antiquated vocabulary in medicine," she says. "We should be asking and educating patients about the importance of an advance directive instead of defaulting to the emergency contact world."
The study was funded by Henry Ford Hospital.