On the Road to End Well with 2019 ePatient and Speaker, Adam Hayden

By Adam Hayden

Living with serious illness and participating as both an End Well ePatient (2018) and speaker (2019), I am keen to pull conversations about death and dying out of the shadows of taboo and invite folks to see how discussing the end of life helps us live better each day. On November 3, 2019, I hosted a film screening and panel discussion using the documentary, End Game, and an interprofessional panel, to engage the public in a meaningful evening. In this post, I share how the event came to be, and I offer words of gratitude for the panelists.

“Adam, it’s great to catch up! What have you been up to?” my friend and philosophy professor asks from across the wobbly coffee shop table. Shifting the weight through my elbow to steady the table, I lean in to pitch the idea.

Five of us meet monthly for what we’ve informally called “philosophers coffee.” I’ve joked that we meet monthly on philosophy-time, which is every six weeks, fifteen minutes late.

“I am going to host a film screening of the Oscar-nominated documentary, End Game,” I begin.

End Game is a film that “weaves together three stories of visionary medical providers who practice on the cutting edge of life and death, helping to change the way we think about both.”

And following, I am moderating a discussion with an expert interprofessional panel.

And I invite people to come-as-they-are and open their minds and hearts to a public conversation on themes dealing with death and dying and humanizing the end of life.

And all that is going to happen in a punk rock bar in the transitioning Indianapolis neighborhood, Fountain Square.

What do you think?

Following a #RoadToEndWell pop-up event I attended with End Well Founder and physician Shoshana Ungerleider at the healthcare startup incubator, MATTER, in Chicago this summer, written up by the MATTER team in this post, I felt immediately driven to raise local awareness both of the End Well Foundation and also of the larger movement to de-medicalize the end of life experience; to make it more human.

The medicalization of life and death has operationalized the most human experience: our own death. What’s more than protocols and full codes, the very act of medical intervention during our most vulnerable moments instructs physicians and patients alike that a diseased body is less than fully human; something to be worked on and written up; charted and surveilled. Death, the ultimate human frailty, is to be avoided at all costs.

Yet there is death.

Knocking.

Beckoning.

Inviting us to leave the laptop at work, silence our phones, and share a meal.

When we look closely, dying is a lot like living. Indeed, dying is living! There is not a threshold where you get your ticket punched, passing the toll gates from the land of the living to the land of the dying. Each of us occupy a place on the full spectrum of humanity, and at times in our lives, we transition from health to illness, different abilities, and competing values. Death is radical life, when each of these dimensions collide.

The important question is not whether to discuss death, but where, when, and how? My spouse and I learned at thirty-four and thirty-five years old, respectively, that when to discuss death is now. A young husband and dad to three boys, aged four, two, and eight months old at the time, with no major medical history, I was diagnosed in 2016 with the aggressive brain cancer, glioblastoma. A disease that is so far incurable, with a grim prognosis. The present moment pressed these important conversations.

End Game provides the how. Supplemented with a discussion guide, this forty minute Netflix documentary encapsulates the mystery, fear, grief, and beauty of ending well, featuring expert clinicians and patients — all people, occupying their space on the spectrum of humanity, and moving forward together.

And that leaves us with where? Where might we approach these personal, sometimes unsettling, often affirming, and human conversations? Where might we leave our laptops behind and share a meal?

I asked my friend Joshua Gonzalez, a recognized bartender and bar owner in Indianapolis. A few years ago, Josh reflected on his life as bar owner and leader in the Indianapolis service industry to acknowledge he was healthier sober, and he’s shared this journey publicly to shine a light on substance abuse in the restaurant and bar scene. I had a hunch that Joshua, interested in discussing taboo topics and growing through them would be on board, and he quickly agreed to host our event.

With the partnership of the End Well team, a venue confirmed, and this vision taking shape, I worried identifying panelists to take a risk on this concept may take a little arm-twisting.

Happily, invitations were quickly accepted, to the credit of those invited and their enthusiasm to take these important conversations from the clinical setting and university lecture hall directly to an informal, public venue.

Our interprofessional panel included specialists and educators from medicine, medical humanities, religious studies, chaplaincy, and psychology. I thank the following friends and colleagues, and I share highlights from our panel discussion.

Tom Fodor, CEO of Morning Light, Inc. that operates the Abbie Hunt Bryce Home, a hospice home for folks who do not have a place to call their own, shared a few minutes about the incredible work they are doing in Indianapolis. This was especially valuable for attendees who saw the Zen Hospice Guest Home detailed in the film.

Emily Beckman, PhD, an Assistant Professor of Medical Humanities and Health Studies at the IUPUI School of Liberal Arts and Director of that program. Professor Beckman is a former professor of mine when I studied Medical Humanities as an undergraduate, and I continue to learn through our conversations.

Prof. Beckman challenged attendees to stretch their moral imaginations through reading both nonfiction memoir accounts of illness, and, maybe more importantly, immersing themselves in fiction and poetry. Prof. Beckman connected moral imagination with neuroplasticity: our brains change as we imagine ourselves into others’ life-worlds.

Rev. Anastasia Holman, MDiv, MBA, ACPE Certified Educator, is Manager of Spiritual Education for IU Health System at Indiana University Health. Her work connects mind, body, and spirit as three dimensions required to be balanced for health and wellbeing. If one of these dimensions is out of balance, Rev. Holman explained, the others will suffer, too.

Andrea Jain, PhD is Associate Professor, Department of Religious Studies at IUPUI School of Liberal Arts, and she is the editor of the Journal of the American Academy of Religion (JAAR). Professor Jain is an expert in history and sociocultural significance of yoga, with two books with Oxford University Press, Selling Yoga (2014) and the forthcoming Peace, Love, Yoga (2020).

After hearing Rev. Holman address theological and spiritual basis of chaplaincy, I asked Prof. Jain to discuss the distinct field of religious studies that takes an analysis of religion in view. “I’m the nerdy, godless professor type,” Prof. Jain joked. Prof. Jain explained that Religious Studies is interested, in part, with defining common characteristics across religious traditions. Their commonality is perhaps their differences! Acknowledging different traditions is integral to respecting the end of life journey, each with their own rites and rituals.

Palliative medicine physician, Lyle Fettig, MD is Director of the Hospice and Palliative Medicine Fellowship program at Indiana University School of Medicine. Dr. Fettig invited me in October 2018 to give a talk to the palliative care fellows, faculty, and staff. Serendipitously it was this essay that I wrote for End Well last year that piqued his interest. Dr. Fettig reminded us that “care for the cancer or pneumonia is not as important as care for the person.”

Shelley Johns, PsyD, HSPP, ABPP is a research scientist at the Indiana University Center for Health Services and Outcomes Research. Dr. Johns left us with this lasting insight, even in serious illness, “You can live taller, and you can live deeper, so you can live larger, even if you do not live longer.”

Attendees asked insightful questions about holding suffering, rather than always seeking to resolve it. Another attendee asked about the relationship between spiritual support and evidence in medicine. A death doula reminded attendees of the healing power of touch during the end of life, and in a powerful conversation I had with a small group following the formal panel, we talked about cognitively, or intellectually, accepting that we die, but not being able to emotionally accept and believe it. That underscores the importance of events like those happening throughout the country on the #RoadToEndWell.