End Well Speakers: It’s Time to Talk About Death and Life

Since its founding by Dr. Shoshana Ungerleider, the nonprofit End Well Project has always been about the power of words. Whether it is the conversations families need to have as they discuss the end with loved ones, the stories we tell to keep memories alive, or the compassionate but clear language and understanding those in the health care and hospice continuum need as they talk to patients, or the listening that can be the greatest gift of all – there’s a common thread about the importance of language in our relationship with the narrative around death and dying.

End Well’s mission is to “transform how the world thinks about, talks about, and plans for the end of life.” It is in service of that mission that the group holds an annual symposium. For the second time following the pandemic, End Well 2024 brought together speakers from health and palliative care, hospice, education, Hollywood and Broadway entertainment, and beyond – delivering their passion, tragedies, resilience, and experience to a sold-out audience in Los Angeles.

Throughout the day, in many ways and from a wide variety of backgrounds, End Well’s experts shared how opening up the conversation created space for healing and understanding.

The three speakers below all touched on the power of words in different ways: Conversations shared by a high school English teacher helping his seniors learn about death, brief handwritten sentences shared with a hospital chaplain on a form about patient wishes, and an intimate and difficult talk between a doctor with a dear friend who didn’t want anything “sugar-coated.”

Bringing Death Education to High Schoolers

High school English teacher Austin Roy (who brought his class of senior teens to End Well) shared his origin story of his class about Joan Didion’s book, “The Year of Magical Thinking.” Beyond the book, Roy delves into the larger topic of death education. Roy explained that though he thought parents would email him concerned about the curriculum, those parents were universally supportive of educating their kids on this important topic. “I wish I had this when I was in high school,” the parents all wrote to him, he explained. Roy and a colleague then launched adult death education classes where not only do they teach about death but also, he encourages everyone to fill out an advanced directive together. He believes we all need to work to battle the taboos around talking about death and that everyone can work to be informal death educators. “We need to make death comfortable, non-emotional, and education-centered,” he said. He also reminded us all that “there is no greater gift” for loved ones than filling out an advanced directive.

When the Walls Come Tumbling Down

Hospital Chaplain and author J.S. Park talked about how his faith, “once a simple box” became a “misshapen trapezoid” as he struggled with his work. Under the stress of his role, Park began seeing and hearing visions of the dead, symptoms of his death anxiety. Park explained how eventually he found meaning in a hospital form labeled “other instructions.” In that two inches of space, he found inspiring requests from patients that helped him find his way out of his death anxiety. One asked, “Let my dog see me to say goodbye.” Another said, “Bring all my blankets and utensils,” while another said, “Keep all my pictures of my family members near me.” Finally, one said, “Keep putting chapstick on my lips.” He explained the chapstick request was from a woman who did not want to repeat her experience of kissing her own mother’s dried lips goodbye. All of these requests, these words, were crucial for him to grapple with his faith and with death itself. “I think I’ve come to discover that my death anxiety, seeing and hearing the dead, was maybe in some way – that was a gift. Because, instead of letting go of the dead, I’ve learned that grief is letting them in.”

Talk to Me: Inviting Conversations About Death

Anthony Chin-Quee, a doctor turned screenwriter and author, shared a moving story of how while working as a doctor he had felt himself go numb after witnessing so much death in five years of practice. “Death started to look different to me. It lost its mystique… Death was nothing more than a series of mechanical failures.” But when his friend Zach fell ill, he began a journey in which he found his empathy again. Zach asked Chin-Quee to always be honest and never “sugarcoat anything” after discovering his aggressive cancer.

Chin-Quee joked with the EndWell audience that he was able to keep that promise only for about 48 hours. But he had another chance. Because, on the eve of a friends’ trip to New Orleans after Zach had been doing better, he discovered the cancer had made its way to his spine. 

After traveling to be with him, late at night, alone with Zach in his hospital room, Chin-Quee thought about what he could give him.

“The question that my brutal training and my humanity left me uniquely equipped to ask: ‘Do you want to talk about death?’” Chin-Quee knew that this was something his friend could not talk about with his family who had filled the room with talk of hope, prayer, and miracles. And yes, his friend did want to talk about death. “The words just flowed out. It was like an avalanche. I think that freedom to speak about it was because finally, nobody in that room feared death. Death was just the next step.”

Later when Zach died a few months later, Chin-Quee realized too, that he was able to cry and grieve openly after accompanying his friend on this journey. “I cried so hard for the first time in years and years,” he said. 

Chin-Quee wrapped up his talk, by addressing those – who like him – may feel numb after being around death so frequently and explained that the ability to choose when to feel grief, anger, or sadness is a gift. “We are so much better for it,” he said.

“You are not broken. You have gained a gift. You can choose to bring death into the conversation. You can bring it into rooms with you. It is so meaningful for the dying because they want to talk about it,” he said.

You can find more information about the End Well Project on the organization’s website. There’s a video link of the End Well 2024 talks here. You can learn more about having important conversations about the end of life on Afterall.