When her chest pains morphed into cardiac arrest in the Regions Hospital emergency room two years ago, doctors saved Beth Bedell’s life.

She has mixed feelings about that.

Bedell, 67, of St. Paul, is happy to be alive. But she’s troubled that caregivers did not follow her health care directive for no resuscitation, a document drafted after she was diagnosed with a brain tumor.

Frustration built this spring when Bedell made a subsequent trip to the emergency room. Concerned what would happen if her condition took a turn for the worse, she asked staff to look up her end-of-life care wishes in the hospital’s electronic health record system.

They couldn’t find the document.

“They need to be able to get to that and know exactly what I want,” Bedell said. “If I have chest pains again, I’m not sure that I would go back to the hospital.”

Electronic health records are now ubiquitous in hospitals, and the systems give patients what could be a better way to communicate their wishes on treatment options at the end of life. But in too many cases, physicians using the systems struggle to find the documents.

“Weirdly, there is not a handy or consistent place to put these things in an electronic health record,” said Marian Grant, an associate professor at the University of Maryland School of Nursing who studies end-of-life care issues.

Over the last decade, the federal government has offered big incentives to hospitals and clinics for the adoption of electronic health records. The systems are meant to improve care while making it more efficient by providing easy access to critical patient data.

About 96 percent of U.S. hospitals last year were using an electronic health record system, with total spending on the systems in the neighborhood of $3 trillion, estimated Ross Koppel, a researcher at the University of Pennsylvania.

Record systems can store advance directives, where patients can explain preferences on end-of-life care options such as avoiding resuscitation, feeding tubes or ventilators. The documents can help physicians understand a patient’s wishes when the patient can’t talk.

But less than one-third of ER doctors feel very confident they could locate information in the electronic record, according to a survey published by medical researchers in May. It also found that most physicians surveyed said advance care planning documents are important for patient care.

A 2013 report found that information on end-of-life care preferences often was stored in multiple locations within health records, making the documents difficult to find.

If the location isn’t obvious, harried physicians just won’t find the information, said Dr. Joshua Lakin of the Center for Palliative Care at Harvard Medical School.

“We have had a challenge in that electronic medical records … are not really built to optimize finding plans about end-of-life wishes,” Lakin said.

One of the best systems for displaying documents, Lakin said, is at Gundersen Lutheran Medical Center in La Crosse, Wis. — a community that made a big push in the 1990s for residents to file written advance directives.

When Gundersen Lutheran adopted an electronic medical record in 2008, the hospital worked with its vendor to make sure advance care planning documents could be easily found, said Danielle Rathke, the hospital’s coordinator for advance care planning. Every page in the health record has a banner that includes a tab for advance care planning information.

Gundersen’s vendor is a Madison-based company called Epic Systems Corp., which also sells health record software used by most major hospital systems in the Twin Cities. The company says a version of its software launched last year is designed to more prominently display end-of-life care plans.

Hospitals in the Twin Cities are in the process of installing the updates, but they’re not all there yet, said Karen Peterson, executive director of Honoring Choices Minnesota, a group that is modeled after community work in La Crosse to promote advance care plans.

“There’s going to still be some variability, but over time it’s going to be less and less,” Peterson said. “It’s much easier now than it was five years ago.”

Bedell hopes the situation is improving but wants to spotlight the issue where she can. In May, she told her story during a question-and-answer period at the annual meeting for HealthPartners in St. Paul.

“Please figure out a way to fix your medical records,” Bedell told executives at the Bloomington-based health system while standing before a crowd of more than 500 people.

In late 2012, Bedell was diagnosed with an inoperable brain tumor that damaged her trigeminal nerve, a condition that causes chronic pain in unusual ways.

She feels jolted by a snowflake touching her cheek. When the temperature gets below 50 degrees and a slight breeze touches her face, she feels like she’s going to throw up or pass out. Sometimes, she’s laid up for days.

It’s one of many reasons Bedell decided to create an advance directive to tell doctors she didn’t want to be resuscitated following cardiac arrest.

When she thinks about resuscitation, Bedell reflects on cases like Terri Schiavo, the Florida woman who lived for years in an irreversible persistent vegetative state. Too many people have bad outcomes, she says, following resuscitation.

More broadly, Bedell says she’s watched too many friends suffer through too many treatments in the quest to prolong life.

“These things scare me,” she said. “I think every day is a blessing — and I want to always think that.”

When Bedell went to the emergency room at Regions Hospital with chest pains in 2014, caregivers didn’t discuss the advance directive before she went into cardiac arrest.

Doctors made the right call in resuscitating Bedell, said Dr. Tom von Sternberg, a senior medical director at HealthPartners, which operates Regions. The chances with resuscitation are much better, he said, when a patient is being monitored in the ER.

Afterward, Bedell contacted Honoring Choices Minnesota and learned physicians might take more notice of a document called a “POLST,” which stands for “provider orders for life-sustaining treatment.” It’s a medical order that carries more weight.

Bedell isn’t married and doesn’t have children, so she’s informed siblings, nieces and nephews about the long list of medical interventions she wants to avoid. When she landed in the emergency room at Regions this spring, she was dismayed caregivers couldn’t find the POLST in the health record.

“I was thinking: Oh, come on guys, really? I’ve done all this work. I sat down with my doctor. I’ve gotten this notarized. I’m a HealthPartners patient, and this is a HealthPartners hospital,” Bedell said. “It was utter frustration and disbelief.”

The problem, Von Sternberg said, is that Bedell was treated in the ER by a physician who had missed training on where advance care plan documents are located. They had been placed in the computer system under a tab labeled “administrative,” he said, but were moved in November to a different tab called “media” — not exactly an intuitive label.

This fall, the health record at Regions is scheduled to be updated with clearer links to advance care planning documents.

“It is critical that all of our clinicians know where to look and that process is simple and quick,” Von Sternberg said Thursday in a statement. “We failed to do that for this patient. Her experience and courage to call this out to us has helped accelerate our work in this area.”

 

Twitter: @chrissnowbeck