Mayo patient's 'escape' underscores a rare but growing problem

A carefully plotted escape from Mayo Clinic last year — by a young woman and her parents who clashed with her doctors — was a bizarre example of a growing concern: patients leaving hospitals against medical advice.

Few such incidents are as dramatic as the one reported this week by CNN, in which a southern Minnesota woman named Alyssa Gilderhus was taken from her room under false pretenses by her stepfather, who wheeled her to the parking lot and then hustled her into the family car before nurses could stop him.

Medical ethicists who reviewed the case said it is a cautionary tale nonetheless, revealing breakdowns in doctor-patient relationships that can compel patients to leave even before they are stable.

"Mayo is an outstanding institution. I'm shocked this kind of case got as far as it did there," said Arthur Caplan, a former University of Minnesota medical ethicist who now works at New York University and reviewed some of the case documents at CNN's request.

The incidents, known as AMA for "against medical advice," are rare; they account for 1 to 2 percent of discharges from U.S. hospitals. And they're less common in Minnesota, where the state hospital association reported that they occurred in .68 percent of discharges in 2017.

But recent studies suggest they are becoming more frequent. Often the reasons are simple, according to local doctors — patients who insisted on leaving the hospital early for a wedding, for example, or because they had ailing loved ones who needed them at home. Another cause may be the increasing complexity and cost of medical care.

"They see these bills and big copays and say, 'I don't have this money,' " Caplan said.

In most AMA incidents, doctors grudgingly agree to the discharge; they have patients sign forms acknowledging they are leaving against medical advice and then help them plan their return home.

Yet they can produce high emotions and conflict, said Dr. David Alfandre, a medical ethicist for the U.S. Department of Veterans Affairs, who published a book last month on AMA discharges.

"As you've seen from this sensational example, there's often a lot of frustration and outright anger, even on the part of the treatment team, and there's a real break in the doctor-patient alliance," he said.

Gilderhus, 20, and her parents, Duane and Amber Engebretson, disagree sharply with Mayo on what happened in early 2017, when she underwent a series of lifesaving surgeries to treat a brain hemorrhage and then spent weeks in rehabilitative care in the Rochester hospital.

In CNN's account, the Engebretsons felt that a head doctor in the rehab unit treated them rudely and ignored their concerns about weaning Gilderhus off opioid painkillers. Mayo officials countered that Amber Engebretson was physically aggressive with staff and unwilling to learn about her daughter's post-discharge care. Mayo eventually ordered that she have no contact with Gilderhus at the hospital.

Mayo officials at "the highest level" had discussed concerns regarding the parents, according to statements from the hospital, and sought "judicial advice" about appointing a substitute decisionmaker for Gilderhus. At the time she left, she had cognitive deficits, a wound from a breathing tube that was recently removed, and a feeding tube that the family hadn't been trained to manage at home.

"We … made decisions based on what we felt is best for the future of this patient," Mayo's statement said.

Mayo officials aren't sure they would characterize the escape as an AMA case. They initially considered it an abduction and notified Rochester police, who tracked the Engebretsons until they reached a Sioux Falls hospital, Sanford USD Medical Center. At that point, police halted the pursuit and Mayo backed off because the fragile woman was at least in another hospital.

Mayo officials found a signed AMA form in Gilderhus' room, but only after she left, said Mayo spokeswoman Ginger Plumbo. "It wasn't like we knew about the form and ignored it," she said.

Dr. Rahul Koranne, chief medical officer of the Minnesota Hospital Association, said he believes Minnesota has a lower rate of AMA cases because the state has emphasized training doctors and nurses on how to discharge patients so they stay healthy once back home.

"It's a rarity where a patient just up and leaves," he said.

While there have been few studies on preventing AMA discharges, Alfandre said the common thread in almost all cases is that patients or relatives feel upset or powerless.

"Hospitals can be infantilizing and restrictive," he said. "Sometimes the only thing [patients] can do is say, 'I'm out of here. I'm leaving.' "

Minnesota's patient bill of rights allows adult patients to refuse treatment or leave hospitals if they have the mental capacity to make such decisions, and to designate relatives to participate in treatment planning.

The Engebretsons have reportedly consulted an attorney, though they haven't sued. Supporting their case is the fact that police did not arrest them for fleeing, that Gilderhus received prompt care at the Sanford hospital — and that doctors there sent her home days later with simple aftercare instructions.

Gilderhus recovered to the point that she graduated from high school in Sherburn this year and will enter Southwest Minnesota State University, according to the CNN report.

Her parents did not reply to interview requests for this story.

Court records show that Duane and Amber Engebretson have separated since the February 2017 Mayo incident. In a filing in Martin County Court last month, the couple's five minor children were placed in Duane's emergency custody due to allegations of neglect and drug abuse against Amber.

Mayo officials argued this week that they were correct to notify authorities to pursue the family because the patient fit the definition of a "vulnerable adult" who needed protection given her fragile health and the uncertainties over where her parents were taking her.

While leaving Mayo early may not have worsened Gilderhus' health, research has found that AMA patients are at heightened risk of death, disability or hospital readmission.

The Mayo case underscores the need to study AMA incidents more closely, Alfandre said.

"This is a pretty sensational account of an AMA discharge," he said, "but you walk into any hospital, and it's happening."

Jeremy Olson • 612-673-7744