Kaiser Health News recently carried an article encouraging people to create videos to help explain what’s in their advance directives, which are often overly complex legal boilerplate or overly simplistic checkbox forms.
One thing I like about the article, Straight From The Patient’s Mouth: Videos Can Clearly State Your End-Of-Life Wishes, is the discussion of how different situations that might arise could impact an individual’s treatment decisions.
The article starts with an individual:
For years, Wendy Forman, considered how to make her wishes known if she became horribly ill and couldn’t speak for herself.
She prepared a living will refusing cardiopulmonary resuscitation.
She assembled orders instructing medical personnel to refrain from putting in a feeding tube or placing her on mechanical ventilation.
She told her husband and her daughters “no lifesaving measures” under any circumstances if she were unconscious and incapacitated.
“I was terrified of losing control,” this 70-year-old Philadelphia therapist said.
Then, earlier this year, Forman heard of a Pennsylvania physician who was helping people prepare “video advance directives” — videotaped statements expressing their preferences for end-of-life care.
The article links to a few organizations that have video projects or resources for advance directives, and the formats vary. Here’s one of them described in the article:
The Institute on Healthcare Directives’ videos are carefully scripted and usually last 45 to 90 seconds. The goal is to convey essential information to physicians making crucial decisions (perform manual chest compressions? insert a breathing tube?) in time-pressed emergency medical situations.
[Institute founder Dr. Ferdinando] Mirarchi helps draft scripts after taking a careful medical history, explaining various types of medical situations that might arise, and discussing clients’ goals and values in considerable depth.
And here’s my favorite part of the article:
After consulting with the doctor, Forman realized her “do nothing” instructions could prevent her from being treated for medical crises that she might recover from. Now, her video states that if someone witnesses her having heart attack and she can receive medical attention within 15 minutes, resuscitation should be tried.
“I came to see that in my zeal to have my wishes known and respected, I was going to an extreme that didn’t really make much sense,” she said.
It’s fortunate that Ms. Forman went to Dr. Mirarchi, who’s done several studies on the implementation of advance directives, including their misinterpretation and other concerns that might result in people being denied treatment they would actually want. (Too bad it’s not quite as straightforward to explain how people find out by experience why it’s good to Live On! with a disability when many used to think it would be better to be dead than disabled!)
NDY covered some of Dr. Mirarchi’s work in a 2015 blog that ends with a very nice music video on the subject by his colleague Dr. Michael Barton. Readers can learn more about their work at Institute on Healthcare Directives.
I remain as skeptical as ever about the preparation, uses and abuses of treatment specific advance directives (as distinguished from appointment of a proxy), but our society is stuck with them, so videos may be a chance for improvement. Mine would start out, with my motorized wheelchair and breathing mask visible, “Yes, no kidding, I really love my life!” – Diane Coleman