Ever have a “Twilight Zone” moment? Not as in Stephenie Meyer’s Twilight books but the classic black and white TV series when something unexpected always happened.
It doesn’t have to be horrific or alien. It can be that weird feeling you get when someone says something you had just thought about and you think, “Wow, is that a coincidence, or was he or she just inside my mind?”
At a social event in the Spring of 2007, Scott Brown pulled Jeff Zucker aside and said, “Can I talk to you?” Scott was an international corporate securities lawyer, and Jeff was a finance and marketing guy who had been involved in some startups. Their kids were classmates in the same school, their wives were friends, and they sat on a non-profit board of directors together, so of all the things Scott could ask Jeff about, it never crossed Jeff’s mind that Scott was about to push him into a “Twilight Zone” moment.
Scott related to Jeff that he and his wife had followed the horrific media charade that unfolded in 2005 around Terri Schiavo, the 26-year-old American woman in who went into cardiac arrest and collapsed in 1990. Ms. Schiavo spent the next 15 years in a persistent vegetative state while all sorts of people who knew her, and many others who never did, opined as to what medical treatment outcome was best for her.
Scott and his wife’s perspective was colored by their own life experiences: one family member with a deteriorating chronic condition that nobody was talking about and another elderly relative who’d ceased to be able to communicate but who’s back-and-forth to hospitals was causing lots of anguish for the family.
As a lawyer, Scott felt the legal document that should be able to help families avoid this confusion and stress - advance medical directives - needed to be easier to create, and they needed to be stored somewhere they could be more easily found.
He filed papers and formed a company and, in his spare time, tried to figure out what to do next.
That’s when Scott triggered Jeff’s Twilight Zone moment . . .
Not too long before, Jeff had two family health experiences that didn’t go well. He had started to wonder what would happen if his parents had a health crisis. Would he agree with his siblings as to what to do? If something had happened to his wife, would he and his in-laws be on the same page?
So, when Scott asked for help, Jeff heard Rod Serling’s voice in his head.
What Jeff and Scott realised was the solution couldn’t be a quick fix – society had already tried that multiple times over the prior 40+ years and failed each time.
After careful focused research and conversations with “experts” from across the field, a strategic assessment began to emerge.
Lots of issues, not just a legal form, needed to be addressed and resolved. Difficult concepts of consumer behavior, marketing, perception and reality on top of the privacy, security and difficulties of the healthcare technology ecosystem all needed careful consideration.
People didn’t create paper advance directives for lots of reasons: no awareness such documents existed, no sense of urgency to record their wishes, hiring a lawyer was too expensive, there was no desire to confront some difficult thoughts or to make decisions to favor one family member over another and, deep down, they had no confidence their document would ever be found in a crisis or, in any event, the right version of the document, because someone might want to change his or her mind as time passed.
Depending on where a person lived, there seemed to be so many different rules and pieces of paper that it was impossible, literally, to get everyone on the same page. Procrastination was the easier option.
Five plus years of more research, development and testing, and MyDirectives.com went live in 2012, followed by MyDirectives MOBILE (exclusively with Apple) in 2015.
Now, ten years later, ADVault (the creator and operator of the MyDirectives platforms) has processed millions of queries from healthcare providers and has users in more than 40 countries.
In 2016, ADVault had enough clinical evidence and momentum to start attaching hospitals to its database (more than 45 in the USA, and the first international sites are expected to be turned on soon), so that the company could meet consumers’ expectations that their plans – their voices – could be found . . . and when we say “voices,” that is what we mean. Video and audio files for the first time attached to a digital document can give people the chance to be seen and heard at some point in the future if there is a crisis and they can’t communicate.
Clinical evidence now shows these messages can turn errors into better outcomes.
The first time the TEDx folks asked MyDirectives to speak about our innovation, we declined – still more focused on getting it right because, to us, getting it wrong was not an option.
MyDirectives was honored when they asked again, and it has sparked some interesting conversation. We challenged the world to use smartphones to make the “most unselfish selfie.”
Shortly after, the first academic article to focus on the impact of digital advance care planning was published – a prerequisite in the uber-ego-sensitive worlds of healthcare and academia where, sometimes, academic analysis can seem to trump common sense (no political subliminal messaging here please!).
It seems obvious now, but until very recently, health records were only meant to be used by doctors to store and share information.
Consumer groups cried out for the right to let people view, download and share their own information; that was considered bold. But a group of us in the industry pushed for something bigger and, to us, more meaningful: allow people to put their information into their own health record.
To us it is simple: nobody knows better what individuals want for themselves than they do. If we’re in a crisis, how can we express ourselves?
After lots of patient (pun intended!) and painstaking work, we are thrilled to see that just a few months ago, the first technical standards were released in the healthcare industry showing how to get information from a person’s emergency, critical and advance care plan into the electronic medical record.
ADVault has come a long way in 10 years. We have only just begun.
We see a world in which everyone over the age of 18 has a quality plan they’ve started and that they update annually to make sure their thoughts and wishes, people to contact and how, are all up to date.
Thanks to advances in the cloud-computing industry, everyone’s plan will be linked to hospitals and doctors via health information exchanges and electronic health records platforms with security and clinical integrity so the plans can be found in a crisis and respected by medical professionals without family disagreement and confusion.
We see a world in which people, if they have a health crisis, get care that reflects their personal values, goals, preferences and priorities. With better care, people can heal faster, get discharged and go home. For those who can’t, we wish for them a passing that honors their thoughts and one that doesn’t leave behind dejected doctors, a demoralized nursing team and a family fraught with guilt.
ADVault wants people to live with confidence they will have a voice in their care if there’s a crisis no matter where they are. 24/7.
To us, this vision has always been surprisingly simple. Shockingly obvious.
Now, thanks to the millions and millions of people who are proactively making sure they have a voice in their care, our entire team is thrilled to see it is a reality. It’s really real. In other words, it’s not the Twilight Zone anymore.