The Humane Prison Hospice Project 

 By the Humane Prison Hospice Project Team

May 2, 2024

At nearly every presentation we give to the public, our team here at the Humane Prison Hospice Project consistently hears the following phrase: “I’ve never thought about hospice in prisons.”  We’re never surprised to hear this. After all, conversations around aging—much less around death and dying—are often avoided in the United States. Conversations pertaining specifically to our marginalized community members also tend to be avoided by many. It makes unfortunate sense, then, that the need for equitable access to compassionate end-of-life care in our nation’s prisons is often overlooked. 

The aging and ailing of our citizens who are experiencing incarceration is an important issue, and one that continues to increase in severity year after year. It's no secret that the United States incarcerates its citizens at a higher rate than any other nation worldwide.  The number of people incarcerated doubled during Ronald Reagan’s presidency (1980–1988) and didn’t slow down through the 1990s with the passing of legislation, such as “Three Strikes” laws, that encouraged states to incarcerate at a much higher rate. As a result, the United States currently houses nearly 2 million people in its prisons

Notably, of that number, approximately 55,000 are serving life without parole, and half of those 55,000 are considered elderly while 1 in 4 is at least 60 years old. 

It’s astonishing that aging wasn’t taken into consideration decades ago as these legislative changes took effect. After all, people experiencing incarceration are just that: people. People age. People die. Although the 1976 Supreme Court case, Estelle v Gamble, ruled that denying incarcerated people of satisfactory health care constituted cruel and unusual punishment, access to compassionate care remains unreachable − if not altogether unobtainable − in the vast majority of our country’s correctional institutions. 

At Humane Prison Hospice Project, we’ve spent the past few years working to develop a Palliative Care Training Program to address the lack of palliative and hospice care for aging and dying incarcerated people. Our team envisions a society that treats its citizens with equitable, compassionate care, a society that offers empathy, understanding, and support. Our mission, therefore, is to transform the landscape of end-of-life care in our nation’s prisons: A transformation from something barren and isolated to something communal, collaborative, and kind; something that can pave the way for human transformation, not only for incarcerated people receiving care, but for their peers providing that care and the correctional staff members who witness care.

Last year, with the support of Dr. Michele DiTomas and her staff at California Correctional Health Care Services (CCHCF), we completed work on a 15-module training curriculum that provides peer caregivers with the knowledge and support to care for those enduring chronic and terminal illnesses while incarcerated and piloted that training at both the California Medical Facility (CMF) and the Central California Women’s Facility (CCWF). 

With the intention to carry forth the excellent hospice model established at CMF, our curriculum encompasses much of what one might expect to find in a hospice volunteer training, but importantly, is informed by the lived experiences of justice-involved individuals. Piloting this training at institutions with preexisting hospice or palliative care support programs such as CMF was essential; we had to know if the material would be applicable in a carceral setting, and the insights and suggestions of our participants have been critical. We were delighted to receive positive feedback as well as thoughtful recommendations. Altogether, we graduated 39 peer caregivers from these pilot programs, each of whom are eager to serve and improve their communities.

In 2024, we hope to expand our training to three more prisons statewide and continue exploring opportunities for expansion in several other states. We are scheduled to begin training at the first of these prisons, the California Health Care Facility (CHCF) in Stockton in May, and we are eager to meet new participants, hear their stories, and collaborate on the development of a sustainable care program that works for them. Additionally, we regularly receive interest from other states. Currently, we are discussing expansion of our work to states such as Washington, Oregon, and Michigan. 

To that end, we are hard at work developing a model of our Palliative Care Training Program that can be used across the nation. We know that a “one-size-fits-all” approach won’t be successful; our human-centered approach necessitates the careful consideration of individualized needs at every level. Our goal, therefore, is to work with each community to build local capacity so this work can move forward in a way that meets the specific needs of each unique population and suits − and improves − individual institutional cultures. 

What happens in our prisons is a reflection of who we are as a society: what we believe our fellow citizens deserve, how we treat our neighbors, and how we repair harm in our communities. We know that acts of kindness and compassion beget further acts of kindness and compassion,  creating a beneficent ripple effect. Not only does this “ripple effect” improve care for patients, it promotes healthier living and working environments for incarcerated people and correctional staff alike. 

Although it may take some time to truly observe the results of these acts of compassion, they are no less significant and worthwhile. We know that meaningful, comprehensive changes are possible, and fortunately, it’s fairly simple to begin the metamorphosis we imagine: Let’s begin by thinking about it.