20 hospice programs for 3000 prisons
It would be easy to disregard the needs of those incarcerated in prisons. The anguish these murderers, rapists, and drug dealers have heaped upon their victims and communities is often viewed as reason enough to imprison our own sympathies. Yet, some who will likely spend the remainder of their lives within the walls of places like Angola Penitentiary in Louisiana still cling to a sliver of humanity as they stand vigil with dying inmates, holding their hands, offering comforting words, and helping the dying prisoner avoid a lonely death.
Programs in which prisoners are trained to provide hospice care are cropping up around the country. In most cases, prison officials are turning to their local hospice to provide the training. In other instances, hospices are approaching prisons to inquire about the need for hospice care. In either case, the benefit of these programs extends beyond the prison walls, says Jamey Bodreaux, MSW, MDiv, executive director for the Louisiana Mississippi Hospice and Palliative Care Organization in Natchez, MS, and New Orleans.
"Hospice care is being delivered more purely in prison," says Bodreaux. "Whenever I take hospices on a tour of the Angola prison hospice, someone will say, if only we could practice hospice the way they do at Angola.’"
Unencumbered by market demands, insurance rules, and Medicare regulations, all invariably tied to reimbursement, prison hospices operate under the sole premise of helping a fellow inmate die among those closest to him or her rather than being transferred to an unfamiliar institution.
There are an estimated 20 correctional facilities with hospice programs that center around a volunteer inmate component, according to Volunteers of America in Alexandria, VA, which established the GRACE (Guiding Responsive Action in Corrections at End-of-Life) project, an initiative that seeks to improve end-of-life care in America’s prisons. The GRACE project serves as a resource for prisons interested in starting hospice programs. Inmates are usually supervised by a social worker, nurse, or chaplain employed by the prison, according to Volunteers of America.
The National Prison Hospice Association in Boulder, CO, says there are more than 3,000 prisons in the United States, but only 20 to 25 have active hospice programs. The ratio of prison hospices to prison facilities alone suggests that there is a need.
According to Margaret Ratcliff, MSW, vice president of research and development for Volunteers of America and director of the GRACE Project, there wasn’t a priority for end-of-life care in prisons two decades ago because of the small number of terminally ill patients in prisons. But with the advent of HIV/AIDS and passage of tougher sentencing laws and guidelines, the number of terminally ill patients incarcerated in prisons has grown.
All inmates need is the training
Because prisons have a unique culture, inmates themselves are the most qualified to provide hospice and palliative care to fellow inmates. In many cases, inmates themselves represent the only family dying inmates have. All inmates need is the training that will provide the skills needed to ensure dying prisoners’ physical, emotional, and spiritual needs are met.
The Volunteers of America has established the following seven steps for organizations interested in starting a prison hospice:
- Research the need.
- Identify resources and allies.
- Convene a planning group.
- Study other programs.
- Design a hospice program
- Put it in writing.
- Monitor and evaluate.
While the need for hospices to help prisons care for their dying inmates is evident, hospices that set out to establish programs and train inmate volunteers must be committed to a long-term partnership with the institution, says Carol Evans, LCSW, social worker for University Hospital Community Hospice. Evans provided training for the first two groups of volunteers at Angola.
"If you’re not committed because there isn’t enough money or there isn’t enough time, don’t even bother," Evans warns. "These men have heard a lot of promises that aren’t followed through, they have seen people come and go, and they don’t need that kind of pain."
In many ways, training inmate volunteers is much like training volunteers in the free world. The curriculum is almost identical, with a few additions to account for the unique characteristics of the prison volunteer and patient.
To begin, inmate volunteers must become familiar with the hospice philosophy. Fulfilling this requirement takes more than a few simple statements read by hospice trainers. Hospices need to develop a program that exposes inmates to the interdisciplinary team approach to care and that teaches what the volunteer’s role on the team is. The Bill Moyers TV series On Our Own Terms has become a popular introduction to hospice used by prison hospice programs and outside hospices, as well.
Traditionally, hospices approach this task by holding a series of sessions lasting one to three hours. Because inmates do not have the same time constraints, responsibilities, and distractions that normal volunteers have, sessions can be longer and more intense. In many respects, inmate volunteers are more motivated than volunteers on the outside and are more eager to learn quickly, says Evans.
A training program should cover the following subjects:
- the hospice mission;
- the hospice concept (the key features of the benefit, including the emphasis on palliative care over curative care);
- the medical perspective (interdisciplinary team approach and specific pain management methods);
- grief and bereavement;
- spirituality;
- caring for the family;
- patient care techniques.
New volunteers participate in mentor program
Inmate volunteer training programs are generally 35 to 45 hours. The facility providing the education should be committed to providing ongoing training to broaden and sharpen the skills of volunteers who have already completed introductory training. Following completion of introductory training, volunteers should be required to complete a 12-hour mentor program in which they follow an experienced volunteer to get hands-on training prior to being assigned a patient.
Like outside volunteers, Evans says it is important for volunteers to work through their own feelings of death and grief. Many will have grief experiences that are extreme or unusual to the average person. For some, their first experience with death may have come from their own crime. Nonetheless, volunteers need to learn the signs and symptoms of dying and to understand how their preconceptions of death can affect the care they provide when death is imminent.
For example, the idea of allowing someone to refuse basic needs may be hard for some people. A group discussion in the training program about death and dying can help bring about a greater understanding of personal biases. The group discussion allows volunteers to get in touch with their own views on death and dying and allows them to relate it to the hospice’s mission. More importantly, they learn that their views should not be imposed on those they are trying to help.
In the end, inmate volunteers have to be rooted in the notion that hospice care provides comfort, not a cure, and learn the importance of staying within the boundaries of hospice care.
If a patient refuses to eat or drink, for example, the volunteer is told that these are signs of the body shutting down. Rather than intervening because food and water are basic needs, the volunteer understands that the patient’s body is preparing to die. This is especially important in the prison setting, where mistrust is rampant. Volunteers must be aware that withholding food and water in the waning hours of life is not an act of cruelty, but allows the dying process to take its course.
At the California Medical Facility in Vacaville, volunteer inmates are asked to spend a day walking around with pebbles in their shoes, their fingers taped, and wearing a mask that makes breathing difficult and uncomfortable. At the end of the exercise, a hospice patient describes what it’s like to live with pain and the stigma attached to being terminally ill.
"After walking around and listening to the hospice patient, they can understand the loss of identity, dyspnea, and neuropathy a dying patient experiences," says Keith Knauf, MDiv, director of pastoral care at the facility, which serves California prisons. The facility started the first prison hospice in the United States in 1987. Today that hospice is operated by 50 volunteers, 11 inmate workers, and five community staff members.
While training inmates to deliver hospice care is the focus of any hospice-led training program, hospice workers who go into prisons expecting to teach must also be prepared to be taught. Before a hospice can help design a training program, it must understand the culture and rules that exist inside a prison. For example, most prisons have a long-standing rule against prisoners touching other prisoners, and prisoners touching visitors is categorically forbidden.
So how does a hospice trainer design a palliative care program where inmates aren’t allowed to touch one another? "We added an entire session on visitor and inmate interaction," says Evans. "It was hard to do hospice under those conditions." Officials at Angola, however, were eventually willing to bend the rules so care would not be compromised.
In addition, hospices will have to fight the appearance that staff are being replaced by inmate volunteers, an illegal practice that hearkens back to the bad old days of poor prison health care. Hospices will have to combat mistrust by showing that inmate volunteers are actually supplementing the care provided by current staff.
Finally, hospice workers will have to fight their own preconceptions of prison life. It is not a pleasant life and can breed, anger, mistrust, deception, and violence as skills needed to survive in a hostile environment. But, according to Evans, many inmates are trying to find meaning in their lives behind bars, and they cling to their humanity tenaciously.
"When you go into a prison it’s easy to pass judgment on these men," says Evans. "Don’t pass judgments, because there is a lot you don’t understand about life in prison."
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