Aging, incarcerated populations often have poor end-of-life care experiences, with a lack of trained hospice workers at the crux of the issue.
The end -of-life experience looks very different for seniors in prison, with many lacking access to support around the most basic human needs, according to David Garlock, a national public speaker. He is a formerly incarcerated criminal justice reform advocate and reentry expert.
“It’s terrible how many men and women are experiencing their last days or hours of life in prison,” Garlock told Hospice News. “Imagine you’re dying, laying in a bed you can’t get up from without any human contact for several hours in a day. I don’t think there are enough hospice programs in prisons around the country. A lot of times these programs are run by the incarcerated men and women, with nurses and doctors having a very small part in taking care of them.”
Garlock previously provided prison-based hospice care to fellow incarcerated individuals at the Kilby Correctional Facility, part of the Alabama Department of Corrections system. He currently speaks on health equity among prison populations.
Quality issues are tied to a limited supply of clinicians who are trained to provide hospice care in prison settings, Garlock indicated.
Not only do clinicians have limited windows of time at the bedside with incarcerated patients, but they also may not be able to provide the full scope of interdisciplinary services involved – including basic comfort and pain management, he stated.
Incarcerated hospice caregivers must abide by certain rules and processes when it comes to providing others with assistance, depending on the prison, Garlock explained. This means they can be limited in providing end-of-life care support with things such as changing sheets or diapers, bathing or moving the dying person, he stated.
“These are things that you technically had to have a nurse present to do in many cases,” Garlock said. “But it really depends on nurses as far as how much they could do, too. There were certain times they’d lack just doing the basics for people. In some prisons, they have only a couple areas and limited beds for people on hospice could go. It’s also just not having nurses who are trained specifically for hospice care in prison settings. I think what’s necessary is having at least one hospice person at every prison to provide the necessary care that incarcerated people can’t provide or aren’t supposed to do.”
Few prisons in the United States have hospice programs that are well-staffed, according to Lisa Deal, executive director of the Humane Prison Hospice Project. The California-based humanitarian organization helps train incarcerated peer caregivers in providing end-of-life care support.
Part of the understaffing issues is that geriatric populations are swelling “dramatically” in prison settings, with more seniors facing the end of life behind bars without access to hospice services, Deal stated.
Seniors 55 and older represented 15% of the state and federal prison population in 2021, swelling five times past 3% in 1991, according to a report from the Prison Policy Initiative.
Widespread workforce shortages have hospices grappling with the ability to spread strained clinical staffing resources among prison populations, Deal said.
“What’s really at the root of humane hospice in prison is just trying to train these peer caregivers as hospice providers face competing demands for their care in the outside world,” Deal told Hospice News. “It’s about increasing access to care and being able to expand these training programs using caregivers who are really focused on the needs of folks at the end of life in prison.”
Providing caregiver training among incarcerated individuals can increase access to hospice and improve quality outcomes, she indicated. An important part of this training is familiarizing peer caregivers with the nature of hospice care and how this support differs in prison systems compared to other settings, Deal said.
Serious and terminal illnesses can have very different trajectories among incarcerated seniors, especially for those with mental health and addiction issues that can require additional care and support, she stated.
Dementia, trauma and chronic stress are the most common health issues among much of the country’s prison population, the National Institute of Corrections reported. More than 3,000 individuals with these conditions die annually in prison.
“We tend to see people age faster with more physiological and medical needs when they’re behind bars,” Deal said. “Training caregivers can provide a lot of hands-on care alongside nurses, and it can be very tailored towards prison populations that often have very traumatic experiences around death.”
In addition to expanded training, more investment is needed to build structural support systems for dying incarcerated individuals, according to Garlock.
“More money is needed for hospice support behind bars to where it can provide some sort of comfort and peace to dying people,” Garlock said. “Hospices also really need a better understanding of who these people are, what abuses they may have endured and how to help them cope with those experiences. It’s taking risks to take care of these people. Someone on their deathbed isn’t much of a threat to society.”
Companies featured in this article:
Alabama Department of Corrections, National Institute of Corrections, Prison Policy Initiative, The Humane Prison Hospice Project