SPECIAL REPORT: Hospice in Prison
(Editor’s note: About 1.8 million people are incarcerated in the United States, and the prison population has been increasing by 50,000 to 80,000 people a year. Even more striking is the statistic that the nation’s incarceration rate has quadrupled since the mid-1970s to 445 per 100,000, and nearly 1,000 prisons and jails have been built within the past 20 years.1 This special report details a variety of efforts made across the nation to provide hospice care to dying federal, state, and county prison inmates. Inside this issue, you also will find articles about prison hospice volunteers, a Pennsylvania hospice’s training program, and a model Texas prison hospice.)
Growing prison populations will need hospice care
Hospice brings a little compassion to inmates
More than 20 states have or are planning programs that will incorporate the hospice concept in prisons and prison hospitals. Experts say this type of hospice work will increase the next few years as the prison population grows dramatically, resulting in many inmates dying behind bars.
The National Commission on Correctional Health Care (NCCHC) in Chicago and the National Prison Hospice Association in Boulder, CO, have had an increase in phone calls from hospices and prisons interested in starting new programs.
"The hospice movement is growing and becoming more important," says Judith A. Stanley, MS, CCHP, director of accreditation for NCCHC. "Because of the increased number of long sentences and life sentences, and the increased number of individuals coming into the system with HIV-positive status or cancer, the prison population is a particularly vulnerable population."
The National Prison Hospice Association (NPHA) has been developing guidelines for prison hospices to help organizations meet the growing need for end-of-life care among the inmate population, says Elizabeth Craig, executive director of NPHA.
The increasing number of prisoners has also meant more people are dying of diseases in prison; some hospice officials say this points to a need for hospice care.
With the advent of AIDS, the death rate of prison inmates rose sharply between 1990 and 1995. However, this has dropped in recent years because of the success of protease inhibitors and combination antiretroviral therapies, according to Allen J. Beck, PhD, chief of Corrections Statistics at the U.S. Department of Justice in Washington.
Prison hospice work is being conducted in a wide variety of ways. Some freestanding hospices provide full hospice services to prisoners. Others only provide volunteer or training services. Still in other cases, the prisons themselves or their health care providers have formed their own hospices that serve the prison population.
Some prison hospices are funded by federal or state funds or are part of the prison medical services contracts. Other hospices contract to provide services to prisons. Others provide these services at no charge. Prison hospice experts say that no matter what the financial arrangement between a hospice and prison, this is not a money-making enterprise.
Bringing hospice inside
Hospice Care of Broward County in Fort Lauderdale, FL, has perhaps one of the most evolved prison hospice programs, which it provides at no charge. The agency formed a partnership in 1989 with Broward Correctional Institute, a maximum security state prison for women in Pembroke Pines, FL. (See related stories, pp. 23-24.)
"We identified an unmet need and started out slowly by providing a support group and education for HIV/AIDS residents at the institute," says Pat Byrnes, administrative assistant with the hospice. "Then we increased that effort and prepared inmates for the Impaired Inmate Program, where we trained inmates in the facility to be caregivers for inmates who were ill in the infirmary."
This evolved into a full-fledged hospice program after the hospice worked with prison officials, including Elizabeth Vogt, MA, human services program director. Now nurses and other hospice staff, including aides, social workers, and chaplains, regularly visit dying inmates, providing the same services they would provide to a dying person in the community.
State money to pay for hospice care is scarce, so the hospice’s voluntary help is appreciated by both inmates and the prison administration, says John A. Anderson, correctional superintendent for the Broward Correctional Institution.
"It helps the whole prison community by dealing with significant health issues that are most likely terminal," Anderson says. "We do have to create a humane environment within prison, and this helps us meet that mission."
Volunteers among the inmates are given eight hours of hospice training and are closely supervised as they begin to help the dying women in activities of daily living, such as eating, ambulation, and housekeeping duties, Vogt says. The hospice training also dispelled some of the inmates’ ignorance and hysteria about terminal diseases.
Hospice tailored for prison
Inmates who volunteer for hospice work have no external motivation, and choose to volunteer only to gain some personal satisfaction from the work, Vogt says. "They all have a full-time job in the prison, and they do this in addition to that."
The prison has about 20 inmate hospice volunteers, and the dying population has fluctuated between one and five inmates.
"We took the hospice model and tried to tailor it to fit into the prison system," Vogt says. "We provided a lot of time and energy into educating medical and security staff into the concept of having other inmates caring for dying inmates."
The prison staff has responded quite positively to the hospice work, says Anne Watts, RN, a patient family care coordinator and nursing supervisor. Watts visits the dying women prisoners.
"The prison nurse practitioners have conferred with me on several occasions to see if they were doing the right thing as far as managing symptoms or problems," she says.
One big challenge is educating the prison staff about the hospice concept and its approach to palliative vs. curative care.
"You also must understand the safety and security issues involved in working with inmates," Watts says. "You cannot bring anything in with you; so you can’t bring a hospice patient a little something, and you can’t bring anything out of the prison."
Also, hospice nurses cannot reveal any information to prisoners. For example, if a hospice nurse knows that a dying inmate will be transferred to an infectious disease unit, the nurse cannot mention this to the patient.
Vogt and other prison mental health workers provide an escort to hospice staff in the prison. Dying inmates are housed in the infirmary when they need medical attention. When they’re medically stable, they stay in the regular dormitories, which they would not be able to do if hospice staff were unavailable to monitor their health, Vogt explains.
When hospice workers visit terminal inmates who are living in the two-bed dorm rooms, the patient and hospice employee can meet privately in a mental health office, Vogt says.
Finding staff who are willing to visit patients in a prison setting also can be difficult.
"Some people wouldn’t go into the prison if you offered them a million dollars," Watts says. "Then there are others whose eyes light up, and they say, I’d like to do that.’"
The hospice employees’ presence has been a great service to the prison staff and inmates, Vogt says.
"They provide some expertise on death and dying and pain management, and they consult regularly with our physicians," she explains. "And just the fact that someone from an outside agency is coming to see these dying inmates helps their morale and helps them improve physically."
Watts, who formerly worked as a corrections nurse, has experienced some personal benefits from this service. Last Christmas, she had a 38-year-old terminal patient with eight children. The woman’s family was very poor and she was concerned her children, ranging from ages 5 to 18, wouldn’t have any Christmas gifts.
"We put together a big basket of gifts for her children," Watts recalls. The hospice staff chipped in to buy the gifts and took photos of the presents before sending them to the patient’s family hundreds of miles north of the prison. The hospice staff then obtained permission from the prison to show her the photographs.
"That was one of the few times I saw her smile," Watts says. "It lifted her whole spirit, and she was a different person; it even contributed to her condition improving somewhat."
Reference
1. Schlosser E. The prison-industrial complex. The Atlantic Monthly 1998; 12:51-77.
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