The end of life isn’t a topic people generally like talking about, but according to Jeff Zucker, it’s a topic better discussed at the kitchen table than on the operating table.
Zucker is CEO of a company that’s trying to empower consumers to make sure they get what they want, and deserve, in their end-of-life care. Last year, his company ADVault launched MyDirectives.com, a site where anyone can go to create a digital advanced care plan that’s stored in the cloud, so they can edit or access it at any time, from anywhere.
The idea is that, if someone is in an accident or struck by a terminal illness or injury that leaves them unable to communicate, their wishes for how they’d like to be cared for have been documented and can be accessed by the care team.
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But the idea isn’t just to digitize existing advance care plans. It’s to change the way people think about them altogether.
Before creating MyDirectives, Zucker and co-founder Scott Brown talked to doctors, lawyers, consumers and technology experts and found that a plethora of hurdles stood in the way of great end-of-life care planning. One is that people don’t realize they should have advance directives until they’re in an emergency situation and either unable, or not in the right mindset, to communicate their preferences. Or, if people do think about creating a directive, they don’t think anyone would ever be able to find it if something happened — because there’s a good chance no one would.
“Even if you do have one and the care provider could find it, what happens if the family walks in and doesn’t agree with them?” Zucker questioned. “We needed to make something that was actionable for doctors.”
They did that by creating a system that’s HIPAA compliant, meaningful-use certified and aims to address many of the gray areas in end-of-life care. Users set up an account and fill out the directive, which consists of multiple-choice and free-text questions. (It took me about 10 minutes.)
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Along the way, users can click on discussion guides if they’re not sure how they feel about a particular question (for example, in which scenarios would you want CPR administered?). Zucker said there’s also an algorithm built in that alerts users if they’ve responded to a question in a way that conflicts with a previous answer they’ve given. Two questions that ask about a person’s joys and fears allow for video or audio files to be attached.
It’s all free to consumers and hospitals. In the U.S., it’s health plans that foot the bill to offer the service as a tool for their beneficiaries.
Those are all great features for creating a more clear and thorough directive, but Zucker said the real innovation isn’t in the technology — it’s in the process. “It wasn’t about making a technology solution to a problem; it was about figuring out the hopes and challenges of consumers, and the obstacles in changing consumer behavior and creating a system that doesn’t beat them into (making an end-of-life care plan).”
Zucker wants to see advance care planning become something like becoming an organ donor or buying life insurance — something most people make decisions about in advance.
How will MyDirectives make that happen? “We’re working on this, but there’s no one-size-fits-all solution,” he explained, pointing to a few different places he imagines a person could be prompted to create an advance directive. “It could be when you’re signing up for health insurance, or when your health plan is re-enrolling you, or when you become a patient at a hospital for a standard procedure.”
That would only solve some of the problem, though. If more people made care plans, how would doctors know about them when the situation presented itself? For now, MyDirectives prompts people who complete their plan to print a wallet card. Down the road, though, Zucker said integrating the technology with hospitals’ electronic medical records systems will become a priority. “That’s a later phase of our growth; right now we just want to build on the database,” he said.
“We want to continue to drive toward normalizing this topic. We think everyone over the age of 18 should have a great quality plan that’s stored in the cloud available, and we should have a system that truly respects the consumer’s voice.”
[Screen shot from MyDirectives]
