Outlining end of life wishes is not exactly a popular task. But one North Texas company is making it easier.
When people over 65 end up in the hospital, about half of them eventually need someone else in the family to make decisions for them.
End of life decisions.
Still, only a small percentage of people, less than 30 percent in the U.S., have written advanced directives.
My Directives is trying to change that. Co-founders Scott Brown and Jeff Zucker have developed a web-based system they hope will become a sort of Facebook of advance directives.
Right now, Brown says, end of life wishes are still stuck in the era of photo albums.
“That document, once it’s created, it’s placed in a shoe box or file cabinet or safety deposit box or a lawyer’s office, and it’s not available when it’s needed," he says, "People can’t plan their emergencies Monday through Friday 9-to-5.”
Cutting Out The Legal Jargon
The site walks you through filling out a directive, from your interests and wishes, to differences between palliative care and hospice, to the nitty-gritty of life support and Do Not Resuscitate orders (DNRs).
Christine White, 62, is a social worker in Salem Oregon who uses My Directives. She says ten years ago, the first time she filled out a traditional paper advanced directive, she practically went cross-eyed trying to understand the legal jargon.
“[My Directives] helped walk you through more difficult questions,” she says.
And while the process wasn’t exactly fun, White says “there’s an incredible sense of relief once you’ve done it.”
She also liked being able to upload personal messages to her friends and family. In a note to her husband she wrote the following:
“If I precede my husband I want him to know that his incessant whistling was the joy of my life. In fact, every day with him was a gift I cherished.”
I felt so much better he would know how much he meant to me.”
Costs, Savings, And Criticism
In addition to emotional relief, proponents of advance directives say they can save money.
Just look at La Crosse, Wisconsin, where more than 90 percent of its residents have the forms filled out – nationally, the average is around 30 percent. There, the cost of care at the local hospital in the last two years of life is about $18,000, compared with the national average of $26,000.
Still, there are plenty of advance directives critics.
Dr. Henry Perkins has been researching advance directives for 35 years, and he still doesn’t find them very useful.
“They promise more control over future care than is possible, they are hard to implement, and some doctors don’t follow them,” he says.
Perkins thinks advance directives can be useful prompts for patients and families to talk about general values, but warns that the control many people want over their death simply is impossible to plan.
He recommends patients choose one or two people whom they trust a great deal to be their surrogate decision makers in a time of crisis.
“The best we can do is ask people to be there for us,” he says.
Control Through Technology
Dr. Molly Coye, chief innovation officer at the University of California, Los Angeles, envisions a world where talking about the end of life is normal. Perhaps part of signing up for health insurance, getting a driver’s license or applying for a mortgage.
“People are ready to hear this I think,” she says, “It’s just so far there are not a lot of people who have been approached about it.”
Coye says new tools like My Directives make end of life documents more accessible and easier for doctors to follow in emergencies. As for patients, moving the advance directive from the shoebox to a smartphone means making updates is less dusty, and a lot faster.
