About us
Our mission
To transform the that way prisoners die, through education, advocacy, and training to support fellow prisoners as caregivers and grief companions.
What we do
We are developing a humanitarian, cost-effective, and restorative justice solution to ensure that those aging and dying in prison receive compassionate care.
We focus on:
- Community engagement
- Direct-in-prison training
- Training others to replicate our model
- Policy advocacy and outreach
Meet the team
About the team
We are passionately committed to improving the experience of dying — and living — while incarcerated.
Lisa Deal, RN, MPH, ScD
Executive Director
As a community health nurse caring for AIDS patients in Boston during the late 1980s, Lisa discovered her passion for being with the dying. Following that profound experience, Lisa’s life took her down a variety of paths as a clinician, research associate, policy analyst/editor, and grants officer. She earned master’s degrees in public health and nursing from the University of Washington and a doctorate in public health from Harvard University. She spent several years working on child and family policy issues with the David and Lucile Packard Foundation in Silicon Valley before stepping away to raise her three children and engage in community volunteer work. After the tragic deaths of her younger brother, her dear friend and pastor, and her father — all within a three-year span — Lisa felt called to return to caring for the dying.
In 2010, Lisa joined Mission Hospice & Home Care as a hospice and palliative care nurse, and worked in clinical and leadership roles for the next nine years, directing the Palliative Care Program and the Community Outreach Program, and serving as Chief Clinical Officer and finally Chief Executive Officer until 2019. It was during this time that Lisa became involved with Humane Prison Hospice Project. Under her leadership, Mission Hospice became the clinical sponsor for Humane’s work to train the Brothers’ Keepers prisoners at San Quentin State Prison to be compassionate end-of-life caregivers. Visiting with the men at San Quentin was another life-changing experience for Lisa, and today she feels honored to be able to combine her passions for working with the dying and serving those behind bars through the Humane Prison Hospice Project. In her role as executive director, Lisa focuses on strategic planning, fundraising, program development and administration, and supporting the incredible Humane team as they seek to ensure that those dying in prison receive compassionate end-of-life care.
In addition to her work with Humane, Lisa serves on the Board of Directors for GAIA Global Health and Peninsula Volunteers, Inc., and she is a lay chaplain for the Santa Clara County jails. In her personal life, Lisa treasures time with her husband and three adult children and long walks on the beach.
Susan Barber
Program Director, Palliative Care Initiative
Susan’s work in end-of-life care happened by accident during the AIDS epidemic when dozens of her friends became ill and many died. The support she found in the Center for Attitudinal Healing, a group of Buddhist monks and nuns, and Stephen and Ondrea Levine’s work on death and dying allowed her to enter into these deaths with compassion and less fear. After spending 10 years caring for friends and family who were dying, Susan became a hospice volunteer coordinator. She spent 25 years, first at Sutter Care at Home and then at Mission Hospice & Home Care, training more than 600 people in San Mateo County, California, to provide bedside hospice care to thousands of people.
At Mission Hospice & Home Care, she founded, grew, and managed the Community Education Program. The work that resonated with her most deeply during her tenure there was the partnership with Humane Prison Hospice Project’s pilot program to train 16 prisoners in Compassionate End-of-Life Care at San Quentin. A second cohort completed training just one week prior to California’s shutdown due to COVID-19.
For Susan, working with incarcerated people and training them in compassionate end-of-life care and grief companionship is the realization of a dream she has had for almost 20 years. She is grateful to support Humane Prison Hospice Project, and looks forward to the day when all those dying in prison will receive great palliative and hospice care with volunteer support from their compassionately trained incarcerated peers.
Laura Musselman
Outreach & Events Manager
Following the deaths of both of her parents, Laura Musselman felt compelled to begin work in end-of-life care and left her career in higher education as a college philosophy instructor. Upon her departure from academia, she trained with the International End-of-Life Doula Association (INELDA) as an end-of-life doula and became a hospice volunteer for Hinds Hospice in Fresno, California, in 2018. At Hinds, she took on roles as a patient care volunteer, a home hospice volunteer, and a vigil volunteer; soon, she began training other volunteers to sit vigil for patients, which led to working with the Comfort Care volunteers at the Central California Women’s Facility located in Chowchilla, California.
As a former teacher of ethics, and as a human being, Laura believes deeply in the accessibility of compassionate end-of-life care, and that the right to die with dignity is an essential human right. As such, she is proud and grateful to serve the Humane Prison Hospice Project in this role.
Marvin Mutch
Co-Founder / Advisor / Advocate
Marvin is Humane Prison Hospice Project’s spokesperson, advisor, and general hero advocate. Marvin’s biography is an extraordinary one. Through the combined efforts of USC’s Post Conviction Justice Project and The Golden Gate University Innocence Project, he was released from prison February 17, 2016, after serving 41 years on a wrongful conviction suffered in 1975.
In 2008, Marvin was injured and sent to a state prison hospital, California Medical Facility, for treatment. While there, he witnessed its full-service prison hospice program — the only one in the state — shepherd no fewer than 10 of his dying brothers, and he became a fervent supporter.
Marvin created a plethora of advocacy and reform programs while incarcerated. Learn more of his story in the KQED documentary, The Trials of Marvin Mutch.
Edgar Barens
Documentarian / Spokesperson
As a documentary filmmaker, Edgar has a notable record of successful production in very stressful prison environments. His Academy Award-nominated (2014) documentary, Prison Terminal, has screened in more than 60 prisons and at more than 80 colleges, universities, and community centers. Edgar takes great satisfaction in his ability to tackle large-scale problems within the American criminal justice system and present them on a very personal level so that the destructive impact of a dysfunctional correctional system can be made more palpable to the viewer. He took on the mission to document one of the few positive programs behind bars that exists today in the hope that other facilities will emulate Iowa State Penitentiary’s prisoner-run hospice program and instill much-needed dignity to dying in prison for all concerned.
Sandra Fish
Co-Founder / Advisor / Death Row Advocate
Sandra co-founded Humane Prison Hospice Project in 2016, however her work in support of the organization’s mission dates back to 2007. At that time, Sandra was working in the office of criminal defense attorney Michael Satris and asked him: “How are they dying in San Quentin?” His response was: “Badly.”
Sandra is an actor, writer, and advocate. She has decades of passion for prison reform, stemming from a role in the play, Getting Out, which required a great depth of research into prisons. Over the years, she taught in Riker’s Island Prison, worked as an employment specialist for newly released incarcerated people in Manhattan, attended support groups for those formerly incarcerated, sat in on parole hearings, and visited Sing Sing to observe classrooms there.
While Sandra worked with older newly released prisoners, they told her time and again, “I’ll never go back. If I go back, I’ll die in prison. I don’t want to die in prison. I don’t want to die in prison.” Sandra heard the tones of absolute fear and dread in their voices, and they instilled in her an urgency to make sure there is end-of-life care — with prisoners trained in giving the volunteer care — in every prison.
Sandra is co-chair of the San Francisco End-of-Life Network and has trained and worked as a hospice volunteer with added training in pediatric hospice and vigil. She volunteered inside San Quentin, assisting with the initial Brothers Keepers’ end-of-life training sessions. Currently, her focus is advocating for end-of-life care and training on Death Row in San Quentin.
Sage Jeffries
Intern
Sage is currently an undergraduate student at the University of California, Santa Cruz, majoring in Community Studies, and an intern with Humane Prison Hospice Project. She became interested in working with the dying at age 18, when she traveled to Kolkata, India, to volunteer at Mother Teresa’s Home for the Dying. This experience, along with supporting her grandfather through hospice, shaped Sage’s belief in the importance of dying well — and the desire to help this happen. The opportunity to work with Humane aligns with Sage’s interests in becoming a social worker, a prison reform advocate, being with those at the end of life, and engaging in important social change work.
Our advisory board
Ladybird Morgan, RN, MSW, BCST practitioner
Co-Founder / Advisor
Ladybird, one of the co-founders of The Humane Prison Hospice Project, formerly served as the initial Executive Director while being responsible for program development and primary facilitation and supervision of the Brothers’ Keepers Peer Support Crisis Counseling and Compassionate End-of Life-Program.
In addition to her more than 20 years working in hospice and palliative medicine, she has a wealth of experience dealing with trauma, mental health, and the painful repercussions of sexual violence. Ladybird has guided medical practitioners, families, private caregivers, and directors of programs and institutions around the world on how to be present to experiences that may be hard to hear or bear witness to. She has worked with Doctors Without Borders and The Zen Hospice Project.
Ladybird is currently a private palliative care consultant with Mettle Health where she co-facilitates discussions about the practical, emotional, spiritual, and existential elements of chronic and terminal illness. She offers similar support as a staff member at Commonweal’s Cancer Care Help Program. Ladybird’s other primary interest is in supporting the work of psychedelics as tools for healing. She is a co-investigator/study therapist with a University of Washington study of psilocybin-assisted psychotherapy and a Learning Facilitator for Synthesis Retreat Psychedelic Practitioner Training.
BJ Miller, MD
BJ is a hospice and palliative care physician at UCSF. He is also an educator there, and advocates for moving healthcare toward a more human approach. BJ’s 2015 TED Talk, What Really Matters at the End of Life, has been viewed more than 9 million times. Oprah Winfrey interviewed him in 2017 for her Super Soul Sunday program. The New York Times profiled BJ in a Sunday Magazine feature, “One Man’s Quest to Change the Way We Die.” BJ’s first book, co-authored with Shoshana Berger, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, was released in July 2019 (abgtte.com).
BJ has met with the Brothers Keepers’ graduates at San Quentin Prison to teach during their “Compassionate Care at End-of-Life” training.
Eldra Jackson III
After living most of his life devoid of emotions and coming face-to-face with the reality of dying behind bars, Eldra came to a point of self-inquiry, seeking answers as to how his life had spiraled into a mass of destruction set upon self and others. Finally, the space was made to save his life. Today, Eldra is co-executive director of Inside Circle, a nonprofit organization that empowers system-impacted people to lead change from within by providing opportunities for incarcerated and formerly incarcerated people to heal and serve both themselves and others. Inside Circle works to reduce recidivism and all forms of violence — physical, emotional, and psychological — in our prisons and communities.
As a facilitator, leadership coach, and speaker, Eldra works to bring his spiritual medicine into the world while simultaneously guiding others to identify wounds and tap into their own internal salve. In his work as a facilitator, Eldra actively surrenders to what he calls spirit. This surrender supports an empathetic listening and clarity that engenders trust and depth in participants and enables him to dive directly to the heart of the matter. Eldra served 24 years of a life sentence; he spent the last eight sitting with Inside Circle at New Folsom Prison. Today, he is dedicated to giving incarcerated people and the public what he received.
Ken Ross
Ken is the founder and current president of the EKR Foundation, a photographer by trade, and the son of Dr. Elisabeth Kübler-Ross. Ken was the principal care provider for his mother in the last nine years of her life until her passing in 2004.
Ken is proud to serve on the board of directors for Open to Hope as well as on the advisory board of the Humane Prison Hospice Project. Elisabeth Kübler-Ross was a passionate advocate for dignity at death for prisoners. Among her efforts for humane end-of-life care in prisons, she was instrumental in the creation of the still-vital prison hospice unit at California Medical Facility. Her spirit continues to infuse such efforts with the boundless inspiration she has given to generations to create care for all of us as we die, wherever we are.
Nate Hinerman, PhD, LMFT
Nate is an associate professor of psychology and former dean of undergraduate studies at Golden Gate University, San Francisco. He is also on the faculty at the University of San Francisco, where he teaches in the nursing school and the religious studies department. His research intermingles philosophical and psychological approaches to topics such as human suffering, dying, and loss.
Some of Nate’s books include: On Suffering: An Interdisciplinary Dialogue on Narrative and the Meaning of Suffering; New Perspectives on the End of Life: Essays on Care and the Intimacy of Dying, The Presence of the Dead in Our Lives; New Perspectives on the Relationship between Pain, Suffering, and Metaphor; Blunt Traumas: Negotiating Suffering and Death; and Care, Loss, and the End of Life.
The international conference on hospice and palliative care that Nate organizes, the largest of its kind, is in its 18th year. He serves as chair of the San Francisco End of Life Network, a community-based support and education group for hospice and palliative care professionals and patients, now in its 21st year.
Nate has been a trainer for the Brothers’ Keepers Program at San Quentin. He is also a psychotherapist, helping clients transition amidst loss.
Katherine Pettus, Ph.D.
Katherine is the advocacy officer for human rights and palliative care at the International Association for Hospice & Palliative Care (IAHPC). She holds a PhD in political theory from Columbia University and a master’s degree in health policy and law from the University of California, San Diego. Her PhD dissertation appeared as a book, Felony Disenfranchisement in America, now in its second edition with SUNY Press. Katherine is Human’s international contact.
Ira Byock, MD
Ira Byock, MD, is a leading medical authority and public advocate for improving care through the end of life. Ira is an active emeritus professor of medicine and community & family medicine at the Dartmouth Geisel School of Medicine.
He is founder and chief medical officer of the Institute for Human Caring, a component of Providence Healthcare System. The Institute drives transformation in clinical systems and culture to make caring for whole persons the new normal. Its change strategies produce measurable and scalable improvements in health care quality and efficiency.
Ira has been involved in hospice and palliative care since 1978. His research has contributed to conceptual frameworks for the lived experience of illness; measures for subjective quality of life during illness; and counseling methods for life completion. He is a past president of the Academy of Hospice and Palliative Medicine.
From 1996 to 2006, Ira directed the Robert Wood Johnson Foundation’s Promoting Excellence in End-of-Life Care national grant project, which developed prototypes for concurrent palliative care within mainstream health care. From 2003 to mid-2013, he led the palliative care program at Dartmouth-Hitchcock Medical Center and the Dartmouth Health System based in Lebanon, New Hampshire.
Ira has authored numerous articles in academic journals. His first book, Dying Well, has become a standard in the field of hospice and palliative care. The Four Things That Matter Most is widely used as a counseling tool within palliative care as well as pastoral care. The Best Care Possible presents the potential for health care transformation. Ira lectures nationally and internationally.
Ira became interested in supporting incarcerated people who are ill and facing the end of life even before studying medicine. As a draft dodger, he couldn’t escape the feeling that “if not for the grace of God” (and white, middle-class privilege) that could be me. As an early meditator, he subscribed to the monthly prison hospice newsletter that Fleet Maul and Ram Dass published. He learned that for people destined to die in prison, freedom is possible within, and that this work goes to the heart of what it means to be human.
Diane Mailey
Diane has more than twenty years of business development, fundraising, and marketing experience on behalf of mission-driven organizations. Diane’s work with Humane is a natural progression of her commitment to transform our approach to end-of-life care for all.
She has worked with Zen Hospice Project for more than a decade, providing leadership in strategic planning, program development, and fundraising. At Presidio Graduate School, Diane played a major role in the development of the largest and fastest growing graduate school dedicated to sustainable management. She has worked in social sectors from affordable housing to international development on both coasts and in communities located in Africa and Asia, including the Institute at the Golden Gate, BRIDGE Housing Corporation, World Learning, and the Global Security Institute. She holds a bachelor of science degree in Business Administration from Northeastern University and studied architecture at the Boston Architectural Center.
Venerable Professor Geshe Phelgye
Venerable Phelgye, a former member of Tibetan Parliament in Exile and founder of Universal Compassion Foundation and Buddhist Studies and Meditation Center in Spokane, is the Global Scholar and mentor at Eastern Washington University.
In 2006, while on his U.S. teaching tour — well before Ladybird Morgan met Marvin Mutch — Venerable Phelgye visited San Quentin, shared a healing meditation with prisoners, and went on a tour led by Marvin. Marvin requested that he make a personal visit to a prisoner who wanted to die instead of going to death row; He did, and the prisoner passed away peacefully within the next 24 hours. As fate would have it, more than a decade later, Marvin shared photos from this visit and Ladybird recognized Professor Phelgye as the very same cherished teacher leading a Buddhist Sangha supported by her family in Spokane.
In memoriam
Michael Satris, March 25, 1950–July 29, 2020
Mike’s sudden death on July 29, 2020, sent a ripple of deep sorrow throughout the prison, legal, and private communities who knew him. It was in The Law Offices of Michael Satris where the first seed of the Humane Prison Hospice Project was planted. For decades, he ran his private law firm emphasizing post-conviction remedies, prison law, and capital litigation. In 1976, Mike co-founded the highly regarded and still operating Prison Law Office — a nonprofit corporation providing legal services to the prisoners at San Quentin. He was the director there until 1984.
We thank you, Mike, for your support, guidance, and life’s work. Your dauntless spirit will continue to elevate our mission.
Frequently asked questions
Frequently asked questions
What is hospice care?
Hospice care is comfort care without the intent to cure. It is a type of palliative care concerned with the whole person at his or her end of life. The focus of hospice care is on alleviating a terminally ill person’s pain and symptoms while also attending to their emotional and spiritual needs. Hospice care prioritizes quality of life — right to the very end of that life — and supports a dignified death. Typically, hospice care is provided within the last six months of a person’s life.
What is palliative care?
Like hospice care, palliative care is comfort care. However, palliative care may or may not have curative intent. Palliative care may accompany treatment and be offered to a person at any stage of disease.
How many prisons have hospice programs?
Fewer than 5% of prisons in the United States provide hospice or palliative care.
How do prisoners die when hospice care is not available?
Outside prison, a dying person typically receives support from loved ones. However, a person dying in prison usually does not have access to the same support network and cannot choose to die at home, surrounded by family and friends. Most incarcerated people die in their cells, in a prison infirmary, or in an outside hospital while chained to their beds. When prisoners die in their cells, this can be a traumatic experience for their cellmates.
Prisons in the U.S. without hospice programs — the majority — violate the right to health as stipulated in the International Covenant on Civil and Political Rights, the International Covenant on Economic, Social, and Cultural Rights, the Convention of the Rights of Persons with Disabilities, and the Inter-American Convention on the Human Rights of Older Persons; and the UN Standard Minimum Rules for the Treatment of Prisoners (The Nelson Mandela Rules, Rule 1), which states that:
“All prisoners shall be treated with the respect due to their inherent dignity and value as human beings. No prisoner shall be subjected to, and all prisoners shall be protected from, torture and other cruel, inhuman or degrading treatment or punishment. . . .”
Is dying in prison a big issue? How many people are affected by this?
Today, the U.S. has the highest incarceration rate in the world, with more than two million people living behind bars. This population is rapidly aging, reaching crisis numbers. As a result of tough sentencing laws during the past several decades, by 2030, the “elderly” — typically defined as those over age 55 because prison physiologically ages people at a faster rate — are expected to account for one third of the prison population. U.S. prisons will essentially become nursing homes for the ill, the frail, and the dying in the decades to come.
The expense of caring for an aging person who is incarcerated can cost up to five times that of caring for a younger incarcerated person. There are also the immeasurable spiritual costs associated with our collective failure to show humanity. As Marvin Mutch has said, “The way prisoners die says more about us and our humanity than it does about the crimes of the imprisoned.” With the graying of the prison population, the need for more compassionate and effective end-of-life care is acute.
For further information, we suggest:
- KiDeuk Kim and Bryce Peterson’s Aging Behind Bars, Urban Institute, 2014
- The Legal Information Institute at Cornell University
- The Human Rights Watch report Old Behind Bars: The Aging Prison Population in the United States, 2012
Why provide hospice and palliative care in prison?
Providing hospice and palliative care in prison is an expression of compassion for some of the most wounded and troubled members of our society — those who are dying behind bars. These services also prove meaningful to peer caregivers, the families of those dying behind bars, prison staff, and the larger community. Fellow incarcerated people trained as caregivers have an opportunity for spiritual redemption as they are called upon to act with kindness toward the elderly and the sick and come to bear special witness to the value of each human life. Families and friends who are unable to provide direct care are comforted knowing that their loved one is receiving thoughtful attention from his or her fellow incarcerated peers. Prison staff members, as they observe the positive changes in the dying members of the prison population and their caregivers, are moved to see incarcerated people differently. Once released from prison, peer caregivers rejoin their communities as accomplished human beings who possess a much-needed skillset.
What do Humane’s hospice and palliative care programs look like in prison?
In many ways, hospice and palliative care inside prisons look the way they do outside prison walls. An interdisciplinary team composed of nurses, doctors, therapists, spiritual leaders, volunteers, and other laypersons and specialists coordinate to provide care to those who are ill or dying. In Humane’s model, people who are incarcerated and trained in end-of-life care function much like volunteers in community hospice programs: they provide companionship. One difference between prison hospice and community hospice is flexibility: Medicare regulations do not apply to prison hospice and palliative care programs.
Why train incarcerated people as peer volunteers to help deliver care?
Humane’s model of training incarcerated people in compassionate end-of-life care and grief companionship is transformational for the incarcerated person receiving the care; the trained peer caregiver who may for the first time in their life have the opportunity to extend compassion, empathy, and grace to another human being; and the prison correctional staff who witness this incredible act of humanity.
Fellow incarcerated caregivers are, in many ways, the ideal people to help deliver care. The men and women dying in prison often have developed friendships with their caregiving peers and feel more comfortable with them than unfamiliar medical staff. These peer caregivers, who themselves may have received little emotional support in their lives, are encouraged to discover their feelings of empathy and ability to show love.
What is your training curriculum like?
Humane’s curriculum trains incarcerated peer volunteers in end-of-life care and grief support, and trains prison correctional staff on the right to palliative care, the needs of the aging incarcerated population, and how to respond to their needs.
Where is Humane Prison Hospice Project active?
Since 2017, Humane’s team has been active in San Quentin State Prison in California, where we train incarcerated persons as peer support counselors and compassionate hospice caregivers. We will begin hospice care training at California Medical Facility (CMF) in early 2023, and palliative/hospice care training at San Quentin later in 2023. These are two of the largest prisons in California.
Additionally, the Humane team is working to take its palliative care training program to Central California Women’s Facility in mid-2023.
Can your team start a hospice program at the prison where I work?
Our aim is to grow the number of Humane team members in order to train more incarcerated people to provide hospice care. We regret we cannot meet all needs at this time.
However, we believe our “train the trainer approach” can serve as a catalyst for the implementation of end-of-life peer support programs at prisons across the U.S. We can offer guidance. Contact Lisa Deal at [email protected].
Can someone from your team come speak to my organization?
Yes. We regularly book virtual screenings of “Prison Terminal” and discussions facilitated by one or more members of the Humane Prison Hospice Project team. To schedule an event, contact Laura Musselman at [email protected].
I’m a member of the media. Whom can I contact to schedule an interview?
Reach out to Lisa Deal at [email protected].