After many years in the ICT industry I was looking for a new and entirely different intellectual challenge – a perhaps wacky idea that led me to start a PhD in Neuroethics at the University of British Columbia. Neuroethics examines the ethical, legal and social consequences of our increasing knowledge of how our brains and minds work, and, clinically, the ethical issues raised by the increasing range of neurological and psychiatric interventions now routinely employed.

As part of my studies, I read the scientific literature on what happens when we can no longer make decisions for ourselves. In particular I was very influenced by two authors:

Sharon R. Kaufman, a professor at UCSF, wrote the book “… …And a Time to Die: How American Hospitals Shape the End of Life” in 2005, chronicling how our medical system reduces all of us – patients, families, nurses, physicians – to cogs in a machine.

Susan P. Shapiro, now a Research Professor at the American Bar Foundation, spent years observing how families actually made decisions for their loved ones in ICUs. Her 2015 article, “Do Advance Directives Direct?” identifies the heart of the problem: families know “the right outcome; it is the process that haunts and paralyzes them.”

In addition to these two key authors, I found over one hundred more scientific papers that documented how people are routinely over- or under-treated against their wishes, how families are left suffering clinically significant PTSD or depression, how doctors and nurses are burned out by being required to provide treatment they know is futile, and how the cost of unnecessary medical care continues to escalate. Angela Fagerlin and Carl E. Schneider wrote the most conclusive summary: “Enough: The Failure of the Living Will”.

As a baby-boomer in my late 60’s these problems really concerned me in a very direct and personal way. Recently, both my wife and I had to make these types of decisions for our mothers. I personally don’t want to lose control if I should be incapacitated by a stroke or a brain injury. And, most importantly, I don’t want to subject my wife to the trauma of having to make such decisions for me.

An initial spark of an idea in late 2015 led me to discuss possible solutions with many of my colleagues and friends. These discussions led to the understanding that any solution has to incorporate three elements: Clarity, Communication, and Support. Equally important, any solution has to empower the patient and family – it can’t be something provided by the health care system or an insurance company.

Several academics have also proposed solutions to the Failure of the Living Will, but none are practical because their authors didn’t also solve the problem of how to pay for the solution. Because I’m an entrepreneur – not an academic – my thoughts immediately ran to creating a company so the solution could be self-sustaining and the client – hopefully you who are reading this – could remain in control. And thus was born ADX.

We have a quick two-minute survey that will help us ensure we are meeting the needs and concerns of families like yours.
Please take our survey