“Oh wow.” – Steve Jobs’ last words.
Of the more than 70% of Americans who state they want to die at home, only 25% actually do. While the reasons for this are multicausal, the fact that a paltry 20% to 30% of adults in the US have documented their end-of-life wishes in the form of a living will is contributing factor. Put simply, end-of-life conversations are not happening until it is too late, if at all. Consequently, family members are all too frequently forced to make treatment decisions for their loved ones with little insight into the person’s actual wishes.
New research published in JAMA Internal Medicine shows that we frequently error on the side of more treatment, beneficial or not. The study found that nearly 11% of ICU patients received treatments the medical team considered futile. Senior author Dr. Neil S. Wenger attributes this, in part, to a lack of communication. “There has to be far better communication between patients and doctors, families and doctors, patients and families. This ought to be a wake-up call that patients are at times receiving advanced medical treatment that is not benefiting them.” According to Dr. Wenger, patients and families are paying the price of the lack of communication. “It’s costing patients in terms of a prolonged death, and the families in terms of acting on inappropriate hope.”
Fortunately, there has been a surge in initiatives geared towards provoking these crucial conversations and breaking through our collective discomfort with death. Below are a few of my favorite initiatives and ways to get involved.
Let’s Have Dinner and Talk About Death
In a serendipitous conversation with two doctors on a train from Portland to Seattle, Michael Hebb was shocked to learn that while nearly 75% of people wish to die at home, only 25% do. The doctors affirmed Michael’s supposition that, “how we end our lives is the most important and costly conversation America is not having.” Inspired by this experience, Michael started the online multimedia project, “Let’s Have Dinner and Talk About Death” to help spur these conversations. The website allows the dinner host to choose 3 works on death to inspire conversation: one to read, one to watch, and one to listen. They range from a selection from Charolette’s Web, where Charlotte contemplates the cyclical nature of life with Wilbur, to a commencement speech given by Steve Jobs entitled “How to Live Before You Die”. After the 3 pieces are chosen they are sent via email along with an invitation to those attending the dinner.
That the conversations happen over a meal is unsurprising given Michael’s background as a restaurateur, though it confers other benefits as well. According to the website, “The dinner table is the most forgiving place for difficult conversation. The ritual of breaking bread creates warmth and connection, and puts us in touch with our humanity.” Go to deathoverdinner.org to learn more and host your own dinner.
My Gift of Grace
A project of the Action Mill, a group that “designs human-centered solutions for organizations focused on late life and end-of-life care,” My Gift of Grace is a card game designed to provoke thoughtful conversations about the practicalities of dying and our own values surrounding death. Cards feature questions about “end-of-life decision making, advance directives and other issues related to life, death, and dying.” It won the California Healthcare Foundation’s End of Life Challenge, which was designed to find creative solutions to entice more people to “complete advanced directives and document their end-of-life wishes.”
I had the opportunity to play a prototype of the game at the Rebellious Nursing Conference last September. Not only did it provide me with space to reflect on my own death, but it gave me an opportunity to learn from others. This allowed me to consider end-of-life alternatives I hadn’t previously and refine my own end-of-life plans and values.
My favorite part about the game is the alternative way to play where each player writes their answers directly on the cards, creating a permanent record of each players end-of-life ideals that can be referred to later by their loved ones. My Gift of Grace turns the tediously daunting task of creating an advanced directive into a fun, thought-provoking, and shared experience.
Death Cafés
Death Cafés seek to “increase awareness of death with a view to helping people make the most of their (finite) lives’”… all over tea and cake! What makes Death Cafés unique is that rather than a close group of friends or family gathering, it is often strangers who join together to build community and mull over matters of mortality.
As so much of public life revolve around commerce, I personally appreciate the (almost) explicitly anti-capitalist nature of the organization. It is “on a not for profit basis,” has “no intention of leading people to any conclusion, product, or course of action,” and the website states there will be no association with or sponsorship from large private sector organizations within the death industry.
According to the website, there have been more than 415 Death Cafes in multiple continents with more than 3000 participants. Visit the website to find a Death Café near you.
The Radical Nurse 