On June 22, 2018, The New York Times ran a story titled “The Positive Death Movement Comes to Life.” Death discussion movements are now generating coverage in major news media outlets. Here’s an overview of the most popular movements, in order of when they were started in the United Kingdom or the United States.
Dying Matters 2009
In 2009, the National Council for Palliative Care (NCPC) set up the Dying Matters Coalition to promote public awareness of dying, death and bereavement among the citizens of the United Kingdom (UK). The National Health Service England and Hospice UK now fund this effort.
A US equivalent would be if the Medicare program and the National Hospice and Palliative Care Organization got together to promote death discussion. Instead, we had an uproar in 2009 about “death panels” in regard to Medicare reimbursing doctors to discuss end-of-life care issues with their patients. Fortunately, this has since changed. Doctors who see patients under Medicare are now reimbursed for time spent at least starting this conversation.
Dying Matters encourages people to talk with friends, family and loved ones about wishes regarding end of their life, including where they want to die and their funeral plans. Every year in May, Dying Matters and their coalition members host an Awareness Week, an opportunity to place the importance of talking about dying, death and bereavement firmly on the national agenda. The first event in 2010 featured just a handful of events.
How it has grown! In 2018, Dying Matters Week ran from May 14 to 20, with more than 500 events and 10,000 participants in England, Wales and Scotland. Events included speakers and panel discussions, Death Cafes, theatre performances, field trips to anatomy labs, funeral homes, and other related places, grief resources, art shows, and more. Dying Matters Week resulted in multiple news stories, such as a Daily Mirror article on How to Pay for a Funeral.
Dying Matters Week uses an open source approach to listing any event that could be considered relevant. Their website features a page with tips on how to host your own Dying Matters events, including how to prepare, market, and hold an event. Their website is www.DyingMatters.org.
Death Cafes 2011
The Death Cafe movement started in England in September 2011, when Londoner Jon Underwood and psychologist Sue Barsky Reid, his mother, held the first such event at Jon’s home. Based on the work of Swiss sociologist Bernard Crettaz, the Death Cafe objective is “to increase awareness of death with a view to helping people make the most of their (finite) lives.”
The sessions offer a group-directed discussion of death with no agenda, objectives or themes. This is a discussion group rather than a grief support or counseling session.
Death Cafes are a “social franchise,” where those who want to hold such events agree to follow the guidelines of holding a Death Cafe. The guidelines include presenting Death Cafes on a not for profit basis in an accessible, respectful and confidential space, with no intention of leading people to any conclusion, product, or course of action. Most events are free or donation-based. Hosts always offer drinks and food, such as tea and cake or coffee and cookies.
From the first event in 2011 to mid-2018, more than 6,465 Death Cafes have been held in 56 countries around the world. Lizzy Miles in Columbus, Ohio and Gail Rubin in Albuquerque, New Mexico held the first two US Death Cafes in 2012.
In a cruel irony, Jon Underwood died unexpectedly at the age of 44 on June 27, 2017. He had a brain hemorrhage from undiagnosed leukemia. His mother Sue Barsky Reid and sister Jools Barsky continue to run the movement’s website, www.DeathCafe.com.
In 2013, death discussion movements exploded on the public scene, with Before I Die Festivals, Death Salons, and Death Over Dinner events.
Like the Death Cafe movement, Before I Die festivals originated in the United Kingdom. Before I Die festivals boldly take death out of the closet through a host of entertaining and engaging free or low-cost activities. These events help participants to think about, talk about, and plan for our eventual mortality.
The first one was held in 2013 at Cardiff University in Wales. A second festival was held in 2014 at the University of York, part of a network of events across the UK for Dying Awareness Week.
After 2014, no one held another Before I Die festival until 2016, when the idea resurfaced in the United States. The University of Indiana School of Nursing received a grant to hold a Before I Die festival April 15-17, 2016. The festival was scheduled to align with National Healthcare Decisions Day on April 16. In Indianapolis, 800 people attended 28 activities over three days.
The second US Before I Die festival was held October 2016 in Louisville, Kentucky. Coordinators were Kel McBride, the ‘Lively Death Lady’ of Clearly Depart, Justin Magnuson, a death educator with Living Fully, and Deb Tuggle, a clinical nurse specialist with Critical Care Consultants. Their first festival drew over 700 people to 17 events over the course of a month. www.BeforeIDieLou.com.
The first US Before I Die Festival west of the Mississippi was held October 20-25, 2017, with 22 events held at multiple locations around Albuquerque, New Mexico. Six hundred attendees participated over the six-day festival, coordinated by yours truly, Gail Rubin. A second festival is being planned for October 30 to November 4, 2018 in more New Mexico communities, including Santa Fe. www.BeforeIDieNM.com.
Death Over Dinner 2013
The United Kingdom does not have sole title to the creation of events and movements for discussing death. The Death Over Dinner movement launched in the United States on August 24, 2013 with over 500 dinners in 20 countries on a single night. Since then there have been more than 100,000 dinners around the globe.
It started with a University of Washington graduate course called Let’s Have Dinner and Talk About Death, taught by Michael Hebb and Scott Macklin. They recognized that how we end our lives is the most important and costly conversation America is NOT having.
The project provides a simple set of tools to help families and friends address the fact that we are all, at some point, going to die. We suffer more when we don’t communicate our wishes; we suffer less when we know how to honor the wishes of our loved ones. The online platform now has different versions for specific demographics: an Australian Edition, a Jewish Edition, and a Doctors and Nurses Edition.
Death Over Dinner facilitates difficult conversations over the comforting ritual of breaking bread. Tools are available at www.DeathOverDinner.org.
Death Salons and the Death Positive Movement 2013
Perhaps you’ve heard of Caitlin Doughty. She’s described herself as a mortician, activist, and funeral industry rabble-rouser. She’s a New York Times bestselling author and star of the YouTube series, “Ask a Mortician,” which as of this writing has nearly half a million subscribers.
In 2011, she founded the death acceptance collective The Order of the Good Death, which spawned the Death Positive movement.
She is the moving force behind Death Salons, “events that bring together intellectuals and independent thinkers engaged in the exploration of our shared mortality by sharing knowledge and art.” They “aim to subvert death denial by opening up conversations with the public about death and its anthropological, historical, and artistic contributions to culture.”
The first Death Salon events were held in Los Angeles in October 2013. Other Death Salon events have been held every year since in diverse locales, including Seattle, London, San Francisco, and Houston. The next one is slated for the weekend of September 28, 2018 in Boston. www.DeathSalon.org.
Reimagine End Of Life Festivals 2016
Reimagine End Of Life is a nonprofit organization that hosts a week of public conversations exploring life and death, living life to the fullest, and preparing for the time we won’t be here anymore. Reimagine started in 2016 as a prototype of OpenIDEO’s End of Life Challenge, investigating the intersection of art, community and end of life.
The inaugural Reimagine End Of Life festival in San Francisco offered 175 free and paid events all around the Bay Area April 16-22, 2018. Events included art shows, film screenings and theater performances, speakers and field trips, workshops and panel discussions, and concerts. They estimate more than 10,000 attendees participated over the course of the festival.
This fall, there will be another such festival in New York City October 27 to November 3, 2018. There may also be a festival in Cleveland, OH October 8 to 14, 2018. The organization draws upon local partnerships to make these events happen. www.LetsReimagine.org
If there’s no festival in your area, check into local Death Cafes opportunities or host a Death Over Dinner event. It’s well worth your time to hear what thoughts real people express on death and dying. FBA
Gail Rubin, Certified Thanatologist, is the author of three upbeat books on end-of-life issues: A Good Goodbye: Funeral Planning for Those Who Don’t Plan to Die; Kicking the Bucket List: 100 Downsizing and Organizing Things to Do Before You Die; and Hail and Farewell: Cremation Ceremonies Templates and Tips. She’s a Certified Funeral Celebrant and coordinator of the Before I Die NM Festival. Download a 50-point Executor’s Checklist from www.AGoodGoodbye.com.