As a part of our interview series with industry leaders, End Well spoke with Reimagine founder’s Brad Wolfe and Dr. Jeannie Blaustein
Before becoming a nonprofit, Reimagine was initially inspired by OpenIDEO’s End of Life Challenge and was led by Brad as part of an OpenIDEO project exploring art and end of life. Brad also founded the Sunbeam Foundation for pediatric cancer research in memory of friend, Sara L. He has an MA in Sociology from Stanford and an MBA from UC Berkeley, where he has served as a lecturer on the topics of innovation and design. His band Brad Wolfe and the Moon has been featured on MTV, though his fondest moments have been writing and performing songs for other young people facing terminal cancer.
Dr. Jeannie Blaustein is the founding board chair of Reimagine End of Life. Jeannie has spent her professional career as a psychologist, pastoral counselor, and community leader supporting people in the work of having difficult conversations about love, loss, and conflict. Over the last 15 years, Jeannie’s work has gravitated toward the field of end of life, and in particular, the work of advanced care planning, perhaps the most difficult conversation we must each have with our loved ones, yet by far one of the most important. Jeannie is a licensed clinical psychologist, with a PhD from City College, CUNY, and has a D. Ministry degree in pastoral care and counseling from Hebrew Union College — Jewish Institute of Religion.
How is your organization innovating in the field of serious illness care and the end of life experience?
Reimagine innovates by focusing on the transformational power of bottom-up cultural interventions and community activism. What does it look like when an entire community bands together to explore death and celebrate life?
Recently deemed a world-changing idea by Fast Company Magazine, Reimagine is a nonprofit organization that elevates hundreds of incredible partners — inside and outside the medical sector — including those in the arts, spirituality and social services. These partners then work with Reimagine as collaborators in creating experiences and large community festivals focused on death, bringing tens of thousands of diverse participants together, face-to-face, to deepen the experience of living and improve the experience of dying.
What are your top priorities in this work?
As an organization aiming to ferment culture change, our priority is to curate inspirational experiences that shift our individual, family and community relationship with death, dying, grieving and living. We bring people together across diverse demographics to rejoice in life and to consider the emotional and practical questions associated with death. This creates a ripple effect whereby event attendees move out into the world with an enlivened perspective and clearer set of end-of-life action steps.
How is Reimagine incorporating human-centered design into its service development?
Reimagine champions the emerging discipline called “community-centered design.” Whether there’s a Reimagine program in an assisted living facility, a Black church, a Jewish temple, a science museum, a hospital, a comedy club, or a city hall, Reimagine experiences are designed by our partners for the communities they serve. We listen to and empower partners to connect more deeply with their own communities, encouraging them to realize what we can accomplish when we think big, dream creatively and work together across lines that have more often divided us.
Please share why you chose to transform serious illness and the end of life experience as a priority for you/your organization?
Brad: I was 21 when I found myself turning to my favorite hobby and playing regular bedside concerts for my dear friend Sara as she died from a rare pediatric cancer at Stanford Hospital. That’s when I learned about the true power of art and creativity as a means for transformation and connection. Sara inspired me to leave academia and pursue my passion for songwriting more deeply. Through my own subsequent journey, which also included founding a cancer research organization in Sara’s memory, I’ve wondered why we need a 9/11, a mass shooting, or the death of a loved one to motivate us toward what matters most. What if we could collectively hold impermanence in our minds and appreciate what we have every moment? How might life, death, our communities and our planet look different? What might we create together? Reimagine is a humble response to those questions. Life is precious, so why wait.
Jeannie: I grew up in a family that had experienced traumatic loss, and as a result, never talked about death. As I grew older, I began to feel that living with the truth of our situation as mortal beings would bring greater joy and meaning to my life than I’d experienced pretending that death didn’t exist. I shifted my professional focus from working as a clinical psychologist, returned to school to pursue a Doctorate of Ministry and Clinical Pastoral Education, and began working in end-of-life care through pastoral counseling in hospice, hospital chaplaincy and advance care planning. It was then that I began to learn about the staggering gap between what people say they want and the general reluctance to engage in the kinds of behaviors that could best insure that their wishes are honored at end-of-life. Why is that? Because neither the medical system nor our broader cultural approach to death and dying hold space for the agonizing realities of aging, death and dying. Instead, we continue to avoid frank conversations about death and dying. We privilege youth, shun our ill and elderly, and sanitize death; too often we prioritize cure and longevity over patients’ wishes, whatever they may be.
When I met Brad Wolfe in 2016, he had just launched Reimagine’s first iteration in San Francisco as an initiative of IDEO’s innovation arm, OpenIDEO. My first experience of Reimagine was at a performance venue where hundreds of other event attendees (spanning the generations, from 20s to 80s) gathered together, laughing, reflecting, and connecting around the topic of mortality. I recognized instantly that Reimagine’s innovative model of generative conversations and creative, transformational experiences developed by and for community members themselves offered an exciting new way to bring death and all our feelings about the topic into the open, and to support the behaviors that could actually change not only end-of-life care and outcomes, but our entire experience of living. I wanted people in cities across the US to have the opportunity to come together in this way. With this shared vision, Brad and I together founded Reimagine End of Life as a not-for-profit in 2017.
What has been most surprising so far and where have you found unexpected challenges?
Brad: Many people still shun conversations about end of life, whisper when diagnoses are given, and generally avoid the topic of death. And yet, what’s been both surprising and heart-warming is that when given the chance, people actually want to talk about death. As humans, we are inherently driven by curiosity and wonder. It is in our nature to share experiences; people want to tell their stories, share their fears, and hold each other in grief and connection. Through community-based activities and events, Reimagine participants report feeling more grateful for their lives and the people in them, more likely to speak about death with friends and family, and more likely to engage in end of life preparation such as naming a Health Care Surrogate, completing an Advanced Directive and speaking with family and physicians about their end of life wishes.
Given this positive surprise, the biggest challenge has been to meet the demand to scale these urban interventions to new locations across the country. This is where we are currently innovating as an organization, to determine an approach to more effectively empower new communities to host Reimagine End of Life convenings.
If you could wave a magic wand, what would appear?’
Brad: Poof! We all acknowledge our mortality and impermanence, and in turn, embrace life and one another more fully. Fear becomes acceptance, isolation becomes community, anger becomes love, and pain becomes art.
In your organization’s long-range planning (5+ years out), what does caregiving, serious illness care and the end of life experiences look and feel like to a consumer and their circle of caregivers?
Brad: Medical professionals as well as patients and families demanding medical care that consistently prioritizes patients’ goals and wishes first and foremost. We believe that the mythic heroism of the savior doctor will begin to be replaced by images of responsive professionals who privilege comfort over cure and quality of life over quantity of time lived. Caregivers will be better compensated financially and will be less socially isolated as society finds better ways to recognize and honor their work and their grief. Finally, we envision a public engaged in its own healthcare, taking active steps to ensure that our own care wishes are honored through to the end of our lives by, for example, completing Advanced Directives and having honest conversations with our Health Care Surrogates, families, and friends about how we want to live and die.
What advice would you give to other leaders interested in changing serious illness care and the end of life experience?
Brad: Dear Friend, Thank you for your leadership. But through that leadership, try to hold in your heart and mind that everyone is a leader in their own end-of-life (and life) experience. If we respect everyone in this way, we will indeed move the needle (no pun intended).
For each of us — clinicians, advocates, and community members alike — to fully know and experience this, we must bring death and dying out of the shadows by inviting people to engage in transformational experiences that lessen fear, decrease isolation, and deepen comfort with the topics of serious illness and dying. In so doing, we will increase the public’s ability to accept that serious illness and dying are a part of the natural cycle of life; we will educate the public regarding the nature of serious illness care; and we will empower individuals and communities to advocate for the care we each want.
As a leader in the healthcare industry, can you share 3–5 changes that need to be made to improve the overall US healthcare system? Please share a short story or example for each.
Brad: By 2029, all Baby Boomers will be 65 or older, and will require enormous amounts of professional care and attention as chronic and long-term illnesses increasingly define our lives. Medical education needs to be redesigned to include mandatory (rather than optional) training as well as more fellowship funding for all medical, nursing, chaplaincy and social work trainees at both the graduate and postgraduate levels in order to meet the psychologically and medically complex elements of the geriatric, serious illness and end-of-life care landscape.
- People are confused about hospice care. Data show that hospice mitigates suffering, eases caregiver burden, and can even prolong life. But many people associate hospice with death, believing that hospice is appropriate only when death is very imminent, and/or that a referral to hospice means that their medical team is “giving up” on them. Consequently, many patients avoid hospice enrollment or enroll so close to the end that they miss out on its benefits. We need a new and robust public health campaign that clarifies that early enrollment in hospice care enables people to live out their days with greater comfort and more support, and may even result in extending life longer than predicted.
- Patients and families resist recommendations for palliative care because they confuse palliative care with hospice, and further, because they believe that they must relinquish all curative treatments while receiving palliative care. We need a better informed medical team and public information campaign to educate and reassure patients that palliative care is for anyone who is suffering with serious or advanced illness, that this care does not require that we give up curative treatments, and finally, that patients receiving palliative care do not have to be approaching end of life.
- There are many efforts nationwide to encourage and support planning for one’s end-of-life care. We need Advance Care Planning needs to be widely implemented at every possible juncture, much like organ donation has become part of driver registration. Additionally, however, many of us live in cities with multiple medical systems, and/or, are so mobile that we can’t be sure that we will be anywhere near the medical center which happens to hold our records when we face a healthcare emergency. We need a national database of healthcare information that includes our Advanced Directives so that our goals of care and our Health Care Surrogates can be immediately accessed by any treating healthcare professional.
- It is common knowledge that this country faces a crisis as the costs of medical care, prescription drugs, and health insurance premiums continue to increase. Millions of Americans must make impossible choices between medication or health care, and other vital necessities. We need a national health insurance program which guarantees affordable health care to every American. As the US population ages, the basic human right to medical care for all will become even more vital.
What are your favorite books, podcasts, or resources that inspire you? How can our readers follow you on social media? Have we missed anything? Let us know if there’s anything else you would like to share. Include a short bio (300 words or less) to accompany the written piece.
A Beginners Guide to the End, co-authored by journalist Shoshana Berger and palliative care physician BJ Miller, MD, is an accessible and immensely practical guide to dying — and living fully while you do it. Chock full of helpful guidance, professional wisdom and tips for navigating everything from housecleaning to medical decisions, this new book is a comprehensive, intimate and uplifting guide to some of life’s most difficult moments.
The Four Things that Matter Most; A Book About Living, Dr. Ira Byock. In this now classic book, author Ira shares dozens of engaging stories drawn from his decades of working in emergency medicine and palliative care which help readers envision how their most important relationships can be transformed by speaking directly to our deepest longings for connection and love.
Awake at the Bedside: Contemplative Teachings on Palliative and End-Of-Life Care, by Koshin Paley Ellison and Matt Weingast (eds), offers essays, poems, Buddhist teachings and illuminating vignettes drawn from personal experience of being with the dying. With the promise that proximity to death will bring greater lightness and joy into our lives, this book helps readers develop a deeper relationship with mortality, and provides a wise and thoughtful framework for how we can accompany each other through the dying process.
When Breath Becomes Air, by Paul Kalanithi, MD, with an Epilogue by Lucy Kalanithi, MD. This exquisite memoir written by Dr. Paul Kalanithi following his diagnosis of stage IV lung cancer speaks to the real, challenging and poignant moments of living fully in the face of imminent death, and the opportunities for meaning and love even as we mourn.
The Summer Day, poem by Mary Oliver: Oliver’s poem reminds us that every small action is an opportunity for joy and meaning, and that we’re only here for a precious and brief amount of time.
The Nocturnists, created by Dr. Emily Silverman, MD. This engaging podcast (and occasional live performance) offers doctors an opportunity to reflect on their most challenging and sometimes shocking patient encounters. These stories enable the public to get a glimpse into the inner lives, struggles and feelings of medical professionals, thereby opening up the possibility of more mutuality and symmetry in the doctor-patient relationship.
The On Being Project, created by journalist and author Krista Tippet, is a “media and public life initiative” that probes deeply into the moral and creative imagination of our time. Tippet deftly invites listeners into her intimate conversations with thought leaders from all fields, and inspires us to explore our common humanity even as we interrogate what it is that enables us to live fully.
Coco, directed by Lee Unkrich and Adrian Molina, is a beautiful film about death for children and adults that illustrates the power of remembrance and how to honor family and loved ones. The film invites us to live meaningfully and with continued inspiration from all those who have come before.
Extreme Measures: Finding A Better Path to the End of Life by Dr. Jessica Nutik Zitter, describes in poignant and humane detail the ways in which well-intentioned medical interventions morph into decisions that put patients onto “the end-of-life conveyor belt”. Charting her own journey from ICU/critical care to palliative care, Zitter opens readers’ eyes to the slippery slope of treatment and the challenge of resisting “the fantasy of perpetual life”.
How can our readers follow you on social media?
Have we missed anything? Let us know if there’s anything else you would like to share.
It is never too late to participate in the death positive movement! Join Reimagine in SF as it kicks off 250 events across the city this week running through November 3rd.