Frequently asked questions
Humane Prison Hospice Project is developing a humanitarian, cost-effective, and restorative justice solution to ensure that those aging and dying in prison receive compassionate care.
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 individuals experiencing incarceration 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 people experiencing incarceration 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].
“It is said when one of us is chained that none of us are free; and I believe when one of us changes we all do. The cycle of pain can end — when we care for one of us, we begin to heal all of us.”
– Sandra Fish, Co-Founder of the Humane Prison Hospice Project