(Editor’s Note: There was much more to the Expo than what I wrote about here. If you saw any of it, please tell us about your experience in the comments below. — KTB)
I spent most of last weekend at the Beautiful Dying Expo, a virtual event running Friday through Sunday with speakers, workshop presenters, panelists, performers, artists, and attendees from around the world. The entire event was a bold experiment, taking what was usually an in-person convention into cyberspace using the Hopin platform, complete with virtual versions of a stage, workshops, panels, a reception area, behind-the-scenes networking, and booths by over 25 exhibitors.
To set the stage for the event’s international flavor, an opening ceremony began with drumming by Brazilian percussionist Gui Vitali, followed by the New Age vocals of German-born 2020 Grammy nominee Deva Premal, who rose to international fame by bringing Tibetan and Sanskrit mantras to mainstream music. Finally, multiple Emmy-winning composer Gary Malkin shared his Graceful Passages: A Companion for Living and Dying, featuring spoken messages from visionaries of diverse spiritual traditions such as Ram Dass, Thich Nhat Hanh, and Zalman Schachter-Shelomi, among others.
Ken Ross is the son of psychiatrist and hospice pioneer Elisabeth Kubler-Ross, whose 1969 book On Death and Dying introduced the world to the five stages of grief. Ross currently leads an international foundation, which was named after his mother and continues her work. His keynote presentation on her life, her work, and their unique relationship was equal parts inspiration, information, and entertainment.
Saturday was an emotionally charged day focusing on grief support. Widows and widowers of all ages discussed techniques for learning to live without the person you planned to grow old with. Pediatric nurse practitioners, child psychologists, and bereaved parents offered insights into coping with the ultimate loss from the death of a child. On the other end of the emotional spectrum, financial advisors, real estate investors, and attorneys from Fortune 100 firms shared their collective expertise in keeping family wealth in the family.
Final Exit Network (FEN) was particularly well represented during Sunday’s offerings. Early in the day, FEN co-founder Faye Girsh and board member Gary Wederspahn joined palliative care physician Bob Uslander in a panel discussion about options beyond Oregon’s medical aid in dying model, which set the standard for similar laws. Gary did his usual excellent job of describing FEN’s services, Faye (representing Hemlock Society of San Diego) compared California’s End of Life Options Act with Canada’s national program, and Dr. Uslander covered Voluntary Stopping Eating and Drinking (VSED). Rounding out the afternoon, I had the pleasure of acting as moderator for a workshop by Rob Rivas about FEN’s signature Supplemental Advance Directive for Dementia.
In addition to Rob’s workshop and the panels with Gary and Faye, FEN had a booth where visitors could engage in live chats when a moderator was available, sign up for a free one-year membership, and view one or both videos created for the event. I tried to be in our booth for at least the first part of each hour, but I also wanted to network with others at the Expo, since it was technically an outreach event. Special thanks to Gary for bringing the Expo to FEN’s attention, and to Rob Rivas, Brian Ruder, and Jay Niver for stepping in as booth moderators so I could take some breaks
One of the first visitors at our booth was Jane Asher, who hosts The Next Room podcast. Jane also attended Rob’s workshop and exchanged several emails with Gary. We must have done something right, because Jane is now scheduling interviews with Rob, Gary, and me for her podcast. Stay tuned.
As a hospice chaplain, I was initially drawn to Ken Ross’ presentation simply because On Death and Dying is required reading for any hospice professional. It turned out to be a highlight of the Expo for me. Ross shared some lesser-known facts about his mother, such as her uncanny ability to “listen with more than her ears.” He related a story in which she sat with a patient who could barely grunt. Nobody else thought the sounds were intelligible, but after a while Kubler-Ross asked someone to bring the patient an apple. The patient quietly caressed the fruit and smiled. Kubler-Ross then explained that the patient had been a school teacher and had a dying wish to hold an apple just once more as if it were a gift from one of her students.
Ross also shared that On Death and Dying was originally supposed to have another chapter but the publishers convinced the author that it would reduce sales. A draft of the discarded chapter was likely lost in a fire that destroyed a building that Kubler-Ross had built for abandoned terminally ill children with HIV. The fire was classified as arson, widely believed to have been caused by opponents of her work with AIDS who were afraid they would contaminate the groundwater.
The focus of that lost chapter was the author’s strong belief in life after death. She was particularly interested in near-death experiences, which she wrote about in the 1991 book On Life After Death after extensive interviews with over 20,000 people who crossed over and came back. I can personally attest to at least some validity in those claims after numerous conversations with my own patients, who reported strikingly similar experiences regardless of their religious background. With rare exception, the experience was always of seeing dead relatives in their prime and of having an indescribable sense of peace.
Ross spoke at some length about the fact that many people think the five stages of grief are fixed and sequential. If you’re not familiar with the stages, they are: denial, anger, bargaining, depression, and acceptance. But there were never just five. Each of those stages gets a chapter heading in On Death and Dying, but a comprehensive graphic in the book describes at least ten stages, including shock, disbelief, and guilt.
In a July 2020 article for BBC News, Ross reminded readers that, “The five stages are meant to be a loose framework – they’re not some sort of recipe or a ladder for conquering grief. If people wanted to use different theories or different models, she didn’t care. She just wanted to begin the conversation.”
And start the conversation she did. The fifth stage in the original model was acceptance, partly because of her initial conviction that intervening in a natural death would prevent the patient from completing “unfinished business.” She eventually expanded her model to include any kind of loss, such as the end of a relationship, loss of a job, or being convicted of a crime. When dealing with such temporary losses, the final stage of grief is no longer acceptance, rather it is hope, such as hope of a more loving relationship, of more fulfilling work, of freedom.
If you’re a FEN client, you have likely already experienced at least the first four stages of grief. You may have even experienced acceptance simply by accepting the fact of your diagnosis. But instead of accepting a lingering death and all that comes with it, you have the hope that comes with reclaiming the ultimate ownership of your life.
The initial purpose of being part of the Beautiful Dying Expo was to make more people aware of FEN’s existence. Attending the Expo reminded me of everything that FEN offers in the hope of a beautiful death.
Thanks, Kevin, for the good reporting on the EXPO. I’d only highlight the benefit it had for the end-of-life, death-with-dignity movement by creating an environment in which to meet and establish relationships with new colleagues and allies.