End Well 2024 Program Recording
End Well is a nonprofit organization working at the intersection of healthcare and popular culture. We host events and conversations, offer online resources, conduct research and build relationships with content creators to encourage the creation of popular media that educates audiences about the choices and challenges related to end of life, caregiving, grief and loss. Your donation today helps fuel our work.
End Well is a 501(c)3 nonprofit, EIN 82-3405496
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Agenda
Please note, lunch session are only for in-person attendees.
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01 MORNING SESSION: BEING THERE
9:00 AM – 10:30 AM
Time To Grow
Ira Byock, MD, FAAHPM
During his early training, physician Ira Byock discovered that when managed with care, the process of dying allows for profound personal and collective growth. This understanding shaped Ira’s journey in emergency and palliative medicine where his own experience, and the data, show that exceptional hospice and palliative care is both feasible and affordable. Yet challenges arise from America’s profit-driven healthcare system. Our work ahead entails fostering cultural maturation, empowering people to imagine and realize their human potential for well-being through the end of life.
In The Meantime: The Cost of Systems Change
Adimika Meadows Arthur
What happens when systems change takes so long that the “meantime” lasts a generation or more? Health policy change agent Adimika Meadows Arthur examines the amount of time the 85.6 million adults enrolled in Medicaid are expected to spend qualifying for, maintaining and accessing care; and, why this matters if we hope to unlock human potential and make the meantime a little bit kinder to us all.
Time After Time
Hadley Vlahos, RN
When Hadley Vlahos began her journey as a hospice nurse, she was skeptical about fellow nurses’ claims of patients conversing with their departed loved ones. However, witnessing it firsthand changed her perspective. Now, Hadley perceives dying as a profound moment of mystery and a bridging to a comforting dimension we can’t quite quantify or describe. By sharing this revelation, she aims to offer solace to those apprehensive of life’s inevitable conclusion and diminish our shared unease of the vast unknown.
Brotherly Love
Harry Hudson, Remington Rhodes, Simon Davies
Singer-songwriter Harry Hudson seemed destined for success until his life took an unexpected turn at the age of 20, with a diagnosis of Hodgkin’s lymphoma. This diagnosis not only disrupted his life but also became a profound challenge for his brother, Remington, who had to navigate the complexities of the healthcare system to ensure Harry received the best care possible. In this conversation, Harry and Remington reflect on the strong bond they formed during this challenging period, shedding light on the unique hurdles that young people with serious illnesses face in accessing the emotional support and encouragement they desperately need during this fragile stage of life. Joining them is Simon Davies, the Executive Director of Teen Cancer America.
02 MORNING SESSION: KEEPING PROMISES
11:00 AM – 12:00 PM
Seeding Joy
Darnell Lamont Walker
For most people, childhood seems far away from the person they’ve become. Darnell Lamont Walker sees things differently. As a children’s television writer, he infuses qualities of curiosity, vulnerability, joy and empathy into the characters he creates. Qualities that as a death doula, he believes serve us well at the end of life.
The Long Arc of Loss
Laurel Braitman, PhD
After years of attempting to use work and achievement to elude her deepest grief, Laurel Braitman realized that she was hiding from what scared her most: love at the cost of loss—a price she’d paid as a teenager when her father died and then repeatedly over the next 25 years. It was only by engaging with her grieving younger self that Laurel was able to create a life in which she now defines bravery as the vulnerability it takes to love big in the face of loss.
Practitioner, Parent, Patient
Hui-wen Sato, RN, MSN, MPH, CCRN
Clinicians are trained to compartmentalize their personal from their professional lives. Hui-wen Sato challenges this notion by questioning who we’re really leaving out when we leave part of ourselves at the door. By bringing her full experience as a nurse, mother and patient into the room, she creates compassionate spaces of healing for her pediatric patients, their families, and herself.
Healing Without Hurt
Stefan J. Friedrichsdorf, MD, FAAP
In healthcare, pain, even among children, is frequently seen as an unfortunate byproduct of treatment. Stefan J. Friederichsdorf firmly believes this shouldn’t be the case. As the medical director of the Stad Center for Pediatric Pain, Palliative, and Integrative Medicine, he blends modern techniques with timeless treatments to minimize pain, be it from a procedure, illness, or a chronic condition. These are expertise one would wish every healthcare professional possessed, regardless of their patient’s age.
FIRESIDE CHAT
12:00 – 12:30 PM
Getting Real
Tig Notaro with Dr. Shoshana Ungerleider
The night Tig Notaro first shared her breast cancer diagnosis with an audience she said, “With humor, the equation is tragedy plus time equals comedy…I am just at tragedy.” Since then, Tig has manifested great success as a writer, an actor, and a comedian. Famous for literally and figuratively baring herself on stage, Tig hopes that by sharing her vulnerability she can inspire a more open and honest culture around serious illness and survivorship, and invite a few laughs along the way. Tig will be in conversation with End Well’s founder, Dr. Shoshana Ungerleider.
LUNCH
12:30 PM – 2:00 PM
03 AFTERNOON SESSION: CHALLENGING CONVENTION
2:00 PM – 3:15PM
Visual Healing
Louie Schwartzberg
After decades of hearing from viewers that his images of nature changed their lives, filmmaker Louie Schwartzberg embarked on a mission to develop Visual Healing to bring life-like natural environments into the hospital setting. With several research studies completed and underway, Louie is working closely with healthcare providers to better understand how images of nature may be introduced into clinical care to help lessen physical, emotional and existential distress.
Conscious Caring
Claire Bidwell Smith, LCPC
Having lost both parents in her twenties, therapist Claire Bidwell Smith is no stranger to grief. Lately, numerous clients reveal that their anguish stems not only from the loss of their dear ones but also from distressing encounters within the medical system. A problem-solver by nature, Claire shares her insights into how empathy, effective communication and kindness can reshape care, making the journey of loss a bit more bearable.
See One, Do One, Teach One, Be One
Anthony Back, MD
In 2018, Tony Back became the first (and, so far, the only) physician to publish a first person account of his experience with psychedelic medicine. Since then, he’s gone on to lead a clinical trial into the benefits of psilocybin-assisted therapy for clinicians suffering from burnout and is now designing a trial for people with metastatic cancer. We love how Tony is taking the medical adage of “see one, do one, teach one” to the next level by being the change he hopes to see in the world.
Hello, It’s Me: Befriending Your Future Self
Hal Hershfield, PhD
We’re all occasionally guilty of picking immediate gratification over the choices we know might make our future selves healthier and happier. Pioneering psychologist Hal Hershfield shares his groundbreaking research into how envisioning our older selves with affection can help us make better long-term choices now, and maybe get us a bit closer to living and dying as the people we hope to become.
Earthly Vessels: Body Composting
Katrina Spade
Driven by the idea of a sustainable alternative to conventional death care, designer Katrina Spade invented human composting and has worked tirelessly to bring the process to the world. From perfecting the composting vessel and mix of wood chips, alfalfa and straw, to advocating for changes in state policy, to creating space for ritual, Katrina believes that every aspect of her work must embody the deep reverence and awe she holds for the human body and its capacity to gift itself back to the world.
SPOTLIGHT
3:15 – 3:30 PM
Common Ground
Pieter Deknudt
How do we create a healthy culture around death? For musician and movement builder Pieter Deknudt, the answer is by building it from the ground up. What initiated as a solitary concert in a neighborhood cemetery has now expanded throughout Belgium, giving rise to the vibrant “Mourning Revolution.” Pieter advocates for the arts as the secret to breaking down the barriers that can isolate people in their times of need.
04 AFTERNOON SESSION: FUTURE FOCUS
4:00 PM – 4:55 PM
Beside You In Time
D.S. Moss
As the thought-provoking host of the podcast The Adventures of Memento Mori, D.S. Moss deeply understands that we’re all on the clock. Now serving as the chaplain to a man on death row, D.S. is finding that spiritual care is not what we say that matters so much as bearing witness to the very human struggle to make peace with life—particularly when one’s death date looms large on the calendar.
Healing Through Story
J.J. Duncan
Having mothered a child through his dying, J.J. Duncan is now focused on helping our culture “grow up” about death. The showrunner for The Gentle Art of Swedish Death Cleaning, she knows that the stories the media presents are powerful agents for change. J.J. believes that each of us has a story to tell that can help those around us learn from the deaths we’ve witnessed, the pain we’ve borne and the lessons we’ve learned along the way.
The Care Economy
Ai-jen Poo
While working at a domestic violence call center, Ai-jen Poo recognized that many women were confined in abusive relationships because their wages as caregivers were so low they couldn’t afford to leave. This realization propelled Ai-jen to spearhead a significant movement championing the rights of domestic workers and promoting support for both paid and unpaid caregivers. Ai-jen emphasizes that by prioritizing care at the heart of our economy, we can envision a future where every individual has the opportunity for a dignified life and a gracious end.
Back To The Future
Andrew MacPherson
Health policy expert Andrew MacPherson delves into the evolution of hospice and palliative care since Elizabeth Kubler Ross’s seminal 1972 Senate testimony. He reflects on the unchanged landscape of end-of-life care against today’s complex healthcare system, emphasizing the need for policy reform that aligns with changing demographics, healthcare economics, and personal narratives. Andrew underscores the power of personal stories in driving policy changes and fostering a more empathetic, effective approach to end-of-life care.
CLOSING CONVERSATION
4:55 – 5:20 PM
Public / Private
Amanda Kloots, Yvette Nicole Brown
Navigating the tension between public and private can be difficult at the best of times but when grieving the loss of a loved one or caring for someone who is ill, knowing what to share can be particularly difficult. TV host and fitness star Amanda Kloots and actor and director Yvette Nicole Brown discuss why they chose to become advocates and what they’ve learned from lending their voices and personal stories to advance social change.
NETWORKING RECEPTION
BOOK SIGNING
5:30 PM – 6:30 PM
