Last wishes: Use video to tell doctors and family what you want at death’s door

When you’re rushed to the hospital in critical condition and unconscious, doctors and family members suddenly have to make all kinds of decisions about your treatment:

Should they put you on a ventilator or a feeding tube? How long should they try to resuscitate you if you stop breathing? How aggressively should they try to keep you alive if you’ve suffered severe brain damage?

About 26 percent of Americans have an advance directive — a legal document that outlines their wishes in those situations.

But a new study suggests there might be something better: video recordings of people talking about the treatment they want before they become patients.

“It is clear based on the research ... doctors are making mistakes interpreting paper-based documents at an alarming rate, and with this video messaging, that can be greatly reduced,” said Jeff Zucker, the CEO of MyDirectives.

Zucker’s Texas-based company has developed a website and a smartphone app to help people record videos and upload them to an online “cloud” that doctors and loved ones can access with a code.

The Center for Practical Bioethics, a Kansas City-based nonprofit, has been following Zucker’s company since 2008, when the center’s current president and CEO, John Carney, authored a report to Congress on advance directives.

“We don’t have any formal relationships yet,” Carney said. “We’re hoping to at some point, basically just because we think his storage program and his retrieval program is the best in the country at this point.”

Even before the latest research on physicians, Carney said the advantage of video was clear. It can defuse high-pressure, emotional situations when a loved one is seriously ill and family members are bickering over what to do.

“Somebody can say, ‘Let’s just listen to mom and hear what she had to say about this,’ ” Carney said.

The latest study was led by Ferdinando Mirarchi, an assistant professor in the University of Pittsburgh Medical Center’s department of emergency medicine.

Physicians in the study were presented with nine scenarios of critically ill patients and asked how they would treat them. All of the 741 physicians at 13 hospitals who participated had access to written advance directives for the patients. Some were randomly assigned a video testimonial from the patient in addition to the written documents.

Mirarchi said the videos were scripted and “primitive,” but the doctors who had them were much more likely to come to the same conclusions about treatment when a patient was “coding” or not breathing.

“The (video) messages can actually change the understanding of code status and the actions to intervene or not intervene,” Mirarchi said.

Through a company called the Institute on HealthCare Directives, Mirarchi is developing a wallet card with a QR code on it that doctors or family members can scan to access a patient’s video.

Christian Sinclair, a professor of palliative medicine at the University of Kansas, said with the ease and accessibility of smartphones and other recording devices now, he sees potential in video advance directives.

“Having a video where someone really shares what’s important to them, it does allow a different level of individualization you can’t always get with boilerplate legal forms,” said Sinclair, who just finished a term as president of the American Academy of Hospice and Palliative Medicine.

Zucker said another downside of paper forms is that they’re often “stuck in a lawyer’s folder or a safe deposit box” when a medical emergency occurs. That’s when a video accessible from any smartphone can take a big emotional burden off a patient’s family.

“We call it the most unselfish selfie,” Zucker said.

This story was originally published April 20, 2017 at 7:00 AM with the headline "Last wishes: Use video to tell doctors and family what you want at death’s door."