End-of-Life Care in Prison
By Sue Coyle, MSW
Social Work Today
Vol. 18 No. 6 P. 16

When hospice care is offered in prison, patients, volunteers, and the prison staff experience compassion and humanity.

Most people don't think about dying in prison, if they think about prison at all. But for many of the individuals incarcerated across the United States, dying is more than a possibility or passing thought. Given their sentences, their age, and, often, their health, dying in prison is inevitable.

The circumstances of the death vary based not only on the person but the facility as well. For some, dying in their cell with their cellmate nearby is the best of terrible options.

"They die in their 'homes,' where their cellmates are, their friends are," says Marvin Mutch, associate director of the Humane Prison Hospice Project and director of advocacy at the Prisoner Reentry Network. Mutch was imprisoned for 41 years after a wrongful conviction in 1975 and was released in 2016.

Dying in one's cell, however, is difficult, not only for the prisoner but also for their cellmate, Mutch says. "In San Quentin [State Prison]," where Mutch was, "there were many times when guys died on their cell floor. If you die in your cell, your cellmate goes to segregation until the autopsy is completed. Most of these guys have lived together as lifers for years, [and] now their grief process must start in total isolation."

In other circumstances, when the individual goes to the infirmary and end-of-life services are not available, the prisoner is often faced with dying completely alone. From what he has observed and experienced, Mutch says dying individuals are commonly locked in a cell where a nurse looks in but cannot be there constantly.

Documentary filmmaker Edgar Barens (Prison Terminal: The Last Days of Private Jack Hall), whose film Angola Prison Hospice: Opening the Door has been used as a training tool for prisoners, concurs with Mutch. "Most people either die alone in their cells, in the prison infirmary, or they get sent off to a state or university hospital where they are shackled to the bed. If there's a nurse in there when you're dying, you're lucky," he says.

Fortunately, individuals, such as Mutch and Barens, and organizations throughout the country, are working to implement hospice services in prisons. In doing so, the prisoners—the people—are able to die with dignity and compassion.

Silver Wave
One of the reasons why end-of-life services are so vital in prisons today is the increasing age of prisoners. "The prison system is a microcosm of society in general," says Jamey Boudreaux, MSW, MDiv, executive director of the Louisiana-Mississippi Hospice and Palliative Care Organization.

In the general population, the number of older individuals is quickly growing. It is expected that by 2035, there will be more people over the age of 65 in the United States than children under age 18. Similarly, in U.S. prisons, individuals older than 55 are the fastest growing age group, according to the Bureau of Justice Statistics.

"We are seeing the graying of prisons," Boudreaux says, a fact that is even more relevant given sentence length. Many of the men and women in prison are serving life, without the opportunity for parole. For example, "In Louisiana, we are 1 of 5 states where life is life. In Mississippi, if you get a life sentence, you're there for 20 years. In Louisiana, you're there for life," Boudreaux says.

"Inmates say 'I'd rather have 500 years than life,' because with 500 years, there's still a chance," he explains. Boudreaux further notes that of the approximately 5,600 men incarcerated at Angola (Louisiana State Penitentiary), 4,500 are serving life sentences. According to the The Sentencing Project, more than 206,000 individuals nationally are serving life or virtual life sentences. (Virtual life sentences are sentences in which the number of years exceeds the expected length of life.)

As the population continues to age, prisons are faced with the challenge of caring for elders and the dying. To date, however, many of the facilities appear unprepared. Mutch recalls a prisoner in his late 90s. Every few days, the man would ask someone where he was and learn, all over again, that he was in prison.

"Does punishment require an awareness that you're being punished for something?" Mutch says. "[The prisoner] ended up getting transferred to a veteran's home. They knew they needed to deal with it. Plus, San Quentin is not equipped to take care of old people like that."

Even when age is not a concern, health may be. "They [prisoners] committed an egregious offense, for which they're paying with the rest of their lives. So they come into the prison system, and they still have all of the medical and psychosocial issues they had prior to coming into Angola," Boudreaux says.

"At Angola," he says, "we probably have three or four patients with a life expectancy of six months or less. But there are 5,600 men at Angola. Out of those, maybe 40 are dealing not with end of life but with some sort of chronic condition."

Hospice Staff
With all this in mind, palliative care and hospice services seem like an obvious addition to the prison system. To date, there are approximately 75 prison hospice programs in the United States. There are more than 1,000 state prisons.

From facility to facility and state to state, the hospice services vary depending on the facility's resources. Some hospices are onsite, while other hospices require the prisoner to be shipped to an alternate location. For example, in California, male prisoners are sent to a hospice at the California Medical Facility.

The professional team at most prison hospices, however, is similar to those outside of prisons with a physician, nurse, and case manager and/or social worker on staff. Their roles, again, are similar to that outside of prison. For example, social workers help connect prisoners and their families with the resources and support they need.

"One of the big things that social workers do," Boudreaux says, "is try to reconnect family members with inmates. It's not easy to do at all. A lot of times, you can't find family members. A lot of time, family members have already died. They don't have any contact with them any more. They're sort of abandoned by their families."

"If they have family, they [the prisoners] can be released to their family," says Laura Bronstein, PhD, LCSW-R, dean of Binghamton University College of Community and Public Affairs in Binghamton, NY, and executive director of the Institute for Justice and Well-Being. "If that's the case, the social worker can help that occur."

If a release is not possible, some prison hospices allow the family to come sit with their family member in their final days. That creates an opportunity for a social worker to speak with the family members and offer assistance. "I love that," says Kandyce Powell, RN, BSN, MSN, executive director of the Maine Hospice Council and Center for End of Life Care. "I can take them out in the hall, and we can sit down and have family meetings. That's what case managers do, too. They [take care of] issues that come up that are related to family or outside resources."

They act as any other social worker would, "with a different twist," Powell says.

In addition to the standard team, there's security. "Prison is all about security," Boudreaux says. "The difference between hospice in the prison and hospice in the free world is two more folks: security and classification.

"Classification is more like the intelligence officers inside of the prison system—the part of the administration that is supposed to know everything there is to know about each of the inmates there."

It can be difficult to include security in the hospice program. Despite multiple invitations, Powell, who trains prisoners as hospice volunteers, has had limited success with getting security members to join team meetings and her trainings. However, when security does buy into the hospice, the services are more ably delivered.

"Everyone has to be on board when hospice gets implemented," Barens says.

Volunteers
Barens spent a significant amount of time in two prison hospices while filming Prison Terminal and Angola Prison Hospice. Each film focused on a different program. He saw first-hand how a team with nurses, doctors, case managers, and correctional officers could work to create a compassionate hospice experience.

However, he says, it is not only the staff that makes hospice services possible. It is also—and perhaps even more so—the volunteers.

In any hospice, volunteers are a key aspect of the program. Bronstein was a hospice volunteer herself. "I worked with a number of different people that were on hospice—that were dying—mostly in their homes," she says. "There were teams of professionals that worked with them, but as a volunteer, I would go and sit with them and talk with them."

In the majority of the prison hospice programs, the volunteers come from the community. They offer support and do all that they can. But the reality is they lack an understanding of what it means to be a prisoner. They lack the ability to comprehend the complex emotions surrounding dying in prison.

For this reason and others, many prison hospices, including Angola, have chosen to train fellow prisoners to serve as volunteers. Both Boudreaux and Powell provide trainings to volunteers within their state's prisons, and Mutch, with the Humane Prison Hospice Project, offers training to groups of men within San Quentin, though there is no onsite hospice program there yet.

The application process and trainings themselves vary. But once trained, these volunteers are able to provide an invaluable service to those nearing the end of life.

"A lot of the staff are very surprised when they see these guys step up and do all the work they're doing," Barens says. "When there's vigil, they stay 24/7. Once [the prisoner] passes away, they prepare and wash the body for the coroner. They're trained to do everything until the very last second. A lot of the staff are blown away."

To best support the volunteers, many of the hospice programs have incorporated opportunities for the prisoner/volunteers to process and acknowledge the difficult work they do and the loss they experience when a fellow prisoner dies.

Both Powell and Barens spoke of memorial services designed to help the volunteers cope and grieve. "There's usually a bereavement ceremony about a week after the death," Barens says. "Everyone gets together in the chapel to reminisce. The family members are also invited to the ceremony."

He adds that a therapist was made available at the Iowa State Penitentiary where Prison Terminal was filmed and that the men are able to request a break from hospice duties when needed.

Benefits
The benefits to having a hospice program onsite, particularly one maintained by volunteers who are also prisoners, is multifaceted. For one, it means that the individual will not die alone. Not only are the volunteers able to remain by the bedside 24/7 during vigil but many facilities allow family members to do so as well.

Beyond that, the presence of end-of-life services brings humanity and compassion into the prison. "Outside of the prison walls, hospice is a caring environment whether it's based in a hospital or based at home," Bronstein says. "In the prison, this is seen often as the caring environment. [The hospice] is a primary area that is a compassionate, caring place to be."

For the volunteers, it gives them a chance to find their own ability to care for others. "For many of them, it's the first time in their lives that they have this purpose to get out of bed," Powell says. "It's not all about them. It's about someone else. This gives them incredible purpose, and they see the reward by seeing the peacefulness of the person who is [dying].

Boudreaux agrees. "When we are convicted of a crime, the system has a way of trying to dehumanize us, turn us into a number, a statistic, into an 'animal the state has to control,'" he says. "When you bring hospice into prison, they share a humanity. It changes the way they start thinking about themselves."

What's more, he continues, hospice allows for a shift in the prison culture. "There is this paradigm shift that takes place inside of prisons that start up hospices. Not only are inmates reminded [of] and display their humanity but the correctional officers see that and they are forced to respond likewise," he says. "The work that they're doing is not just for the patient but for themselves and the rest of the general population to observe. The general population sees this sense of caring, and it changes them."

For the patient, Mutch says, the experience is equally beneficial. "These men become a lamp of hope," he says of the volunteers. "There's this darkness inherent in the prison system that enwraps you and seeps into your bones until all the light you have in you is gone. If you don't have a purpose, a way to keep at least one lamp lit, you are going to become as dark as the place you are in. These men tend the lamp and bring the light of compassion into an otherwise very dark, very violent, very surreal place.

"Some of the most violent people you've ever talked about are inside San Quentin," he says. "[But] you find that once you sit and talk to them, you're able to see there's this lost person at the core of their being. Once that emerges in an individual and you're able to connect with them at that level, it's transformative."

Changing Mindsets
Despite the many clear and palpable benefits to having a hospice within a prison, there are some who resist the idea. As mentioned, members of the prison's security team are not always keen on participating. Bronstein attributes that in part to their role, contrasting it with that of service professionals.

"Social workers are supposed to mediate, advocate, and provide support. Correctional officers are supposed to maintain order. I don't know what their training is like, but it is about much more than controlling prisoners," she says. When the correctional officers see the patients and the volunteers in a hospice setting, caring for each other, holding each other's hands, for example, and offering emotional support, "it's almost a cognitive dissonance," she says.

Beyond correctional officers, administration and society at large are often hesitant to allow such a program into a prison—rejecting not only the change it would require but also the premise. When Barens presents his films in certain settings, he is often asked why society should care about these imprisoned men and women. He, along with Powell, Boudreaux, Bronstein, and Mutch, know that the answer is that we are humans and how we care for others is a reflection of both their humanity and our own.

"When speaking on end-of-life care, no one should be excluded," Mutch says. "Dying with dignity is an essential component of our humanity and needs to be extended even into the shadows of our society, where far too often there are those who will die all alone."

— Sue Coyle, MSW, is a freelance writer and social worker in the Philadelphia suburbs.