by Anne Seidlitz

NPHA staff members, along with Larry Farrow, Executive Director of the Texas and New Mexico Hospice Organization, recently visited the hospice program at the women’s Federal Medical Center-Carswell in Fort Worth, Texas, and interviewed Melissa Johnson, LMSW, the hospice coordinator.

MC-Carswell houses over one thousand inmates, many of whom are assigned there to help run the facility and support patient services. The Bureau of Prisons (BOP) purchased the hospital and surrounding acreage when the Carswell Air Force Base became a naval air station/ joint reserve base. Since then, the BOP has been building and renovating extensively to accommodate the increase in patients throughout the system. Patients receive treatment for a wide variety of health problems, from difficult pregnancies to advanced heart disease. There are two skilled nursing units: one medical/surgical and one long-term care unit. In addition, one of the floors of the renovated hospital houses chronically ill patients who are able to perform most of their activities of daily living. One floor will be set up for inpatient and transitional psychiatric services.

Two years ago, Carswell added a hospice program for female inmates facing end-stage illness.

When the program was first set up as a result of Johnson’s pioneering efforts, the women were not at all open to entering it–even those who would benefit from it the most. Johnson was baffled: the women she counseled seemed to understand the purpose of hospice and how it would help them through the dark days ahead, but they still refused. What was she doing wrong?

“We finally found out from the inmate volunteers what the obstacle was: the women just didn’t want to be separated from their surrogate ‘families’ out in general population,” Johnson said. “They didn’t want to die without the support of their prison ‘mothers,’ ‘grandmothers,’ and ‘sisters.’ So we brought these individuals into the program too, and then the hospice really took off.”

Johnson discovered that the hospice needs of female inmates are different from those of men. In getting the hospice program up and running, she had studied the only models she was aware of–from men’s prisons. These, she discovered, were based on assumptions which did not necessarily apply in a women’s prison. “Women have a tendency to define themselves from their roles as mother, daughter, sister, or friend–how they are in relation to those around them.” By cutting the female hospice patient off from her “family” support group in the prison’s general population, the program was severing a lifeline.

“In my experience,” Johnson added, “women are more emotionally open to staff involvement and interaction. They are more likely to ask for help when they need it and to look to others for guidance. In prison their spiritual life becomes very prominent; in dealing with a crisis they look to others for spiritual support.”

Hospice patients are allowed to live on any unit of the hospital. This is a decision they make along with their physicians. “We try to keep them in the ‘natural surroundings’ as long as medically possible,” Johnson noted. “There are situations, however, when the medical care they need cannot be given in their housing unit and we have to move them to the inpatient medical unit. In such cases, of course, we allow them maintain access to their established support network.”

While increased visitation by peers is often a component of hospice programs in men’s prisons, Carswell went one step further by incorporating surrogate family members into the hospice team. Identified in the Hospice Program Procedures Manual as the “institutional support network,” Carswell “family” members are trained and counseled to work with patients. “Because we’re a medical referral center, women come to us from all over the country, from federal prisons usually much closer to home,” Johnson explained. “And most of our inmates are from underprivileged backgrounds, so their families rarely have the resources to make it to the prison often or for any extended length of time. Once the patients are here, they are not getting regular family visits anymore, and this contributes to the strength and importance of surrogate families at Carswell.”

With the surrogate family network in place, the latest project for the hospice social work staff is convincing patients to join the program earlier. Johnson and her associates feel that currently the program is required to concentrate almost exclusively on crisis-oriented care, since patients are entering hospice at the very end of their illness. Entering earlier would afford patients the necessary time to prepare spiritually and emotionally for death. Johnson hopes that the recently established terminal illness support group will help patients come to terms with their illness, and consider hospice at an earlier stage.

Crucial questions come up in the support group. Frequently patients ask whether entering hospice means that all attempts at curative treatment will be abandoned. Johnson assures them that once they are in the program, all clinically appropriate measures will be taken to treat their illnesses. She cites the example of a young woman transferred to Carswell in advanced stages of AIDS; she was put into the hospice program and at the same time started anti-retroviral therapy. After a reversal of her symptoms, she was transferred into general population, served her time, and went home.

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In the months since the interview, the Carswell program has shown signs of lively growth. Fifteen new inmate volunteers have received training from Johnson, Cheryl Owens, RN, Linda Ford, LMSW, and Chaplain John Berry. Johnson herself is slated to take a nine-day certification course at Hospice of the Florida Sun Coast in Largo; she will then be qualified to provide training in all aspects of hospice care. This will facilitate needed improvements in staff education. In particular, attention will be given to integrating the corrections staff into the program by furthering their understanding of hospice aims and methods and by finding ways to improve their functional cohesion with other staff members.