Designing Death with Jefferson Innovation
Death hovers over everything in medicine, maybe American medicine most of all. Our healthcare system’s traditional focus on the acute incident has implicitly put the focus on preventing death. That doesn’t make it any easier to talk about or deal with.
It might make it harder.
In our culture, death is seen as a failure. We talk about the “battling” cancer and laud the courage of the “fight.” But we can’t always win—actually, we’ll always lose, even you Peter Thiel—and one wonders whether the struggle against death affects the quality of both our deaths and our lives.
Last Thursday, I had the opportunity to attend a workshop on designing death hosted by the Health Design Lab at Jefferson University Innovation. It was a traditional design workshop, structured as an accelerated version of the double divergent process we use at Benjamin & Bond. What made the experience sing was the incredible variety of perspectives that somehow found their way into the basement. We were broken into teams to complete the workshop, and my group included a designer (me), an architect working on vertical farming in urban areas, a woman who had prematurely lost her husband the year before, a nurse, a visiting undergraduate student from Bangladesh and an elementary school teacher. Other groups included clergy, performance artists, mental health professionals and more.
After the introduction, a rabbi in the room posed the question, “I know we’re in a medical setting, but I wonder whether this is a medical problem?” It set the tone for the evening. Both the problems and the solutions the groups worked through tended to be cultural or personal rather than medical. It was fascinating to see the huge variety of ideas generated. Everything from rituals and holidays to new classes in middle school curricula was discussed.
On the drive home, I spent a lot of time thinking about my perspective on how the medical community deals with the end of life, and I see a few major problems.
The first I’ve touched on. Americans are stubborn and they don’t cede to anything. I believe that we artificially extend lives of diminished quality and treat patients with no prognosis for recovery simply because they are in front of us. This is a cultural construct, and nothing fights change more ferociously than culture. This soldier’s attitude permeates everything we do, even the way we educate doctors. “You don’t learn how to cope with death because it’s not addressed,” a medical student told me. “It’s super taboo.”
Talking about death is uncomfortable; talking about money and death feels slimy. Remember the death panel hysteria? There is considerable debate over how much we really spend on end of life care. I have my own thoughts on the systemic effects, but on a case-by-case basis, know this: there is a financial incentive for providers to continue to provide care for patients with little to no hope of recovery and little to no quality of life. What do we do about it? I have my thoughts. What are yours?