A new lesson in dying: Prison hospice program gives inmates sense of dignity
More programs are needed, but implementation not an easy task
A solitary man lies dying in his hospital bed. His wife and children are conspicuously absent and the man has no hope that they will stand vigil in his final hours. His condition has deteriorated precipitously, requiring him to be moved from a setting that had become familiar to him. In desperation, he calls for a nurse, Tanya, with whom he has developed a friendship.
"Miss Tanya, save me," he cries.
But she is not working that day. A stranger reassures the lonely man that everything will be all right. Hours later, the man dies from complications brought on by hepatitis C. Perhaps more significant than the way he died is where he died — alone, in prison.
"It has always bothered me that I wasn’t there," says Tanya Tillman, RN, who was a nurse at the Louisiana State Penitentiary in Angola at the time — the same nurse that the inmate cried for that day. Since then, the prison has established a hospice program to ensure that terminally ill inmates die with dignity, including having family and friends around them.
"He had believed something I told him and trusted me," says Tillman, who now serves as the hospice case manager and inmate volunteer coordinator at the prison. "We formed a bond. He did not have a DNR [do not resuscitate order], and he was being transferred to a hospital where he did not know anyone."
Angola moves from worst to first
In May, the Louisiana State Penitentiary, nicknamed Angola, was given the American Hospital Association’s Circle of Life award, which recognizes innovations in end-of-life care. Labeled one of America’s most inhumane prisons three decades ago, the prison now serves as a model for caring for terminally ill patients.
"Two-thirds of the men who are here will be here until they die," says R. Dwayne McFatter, assistant warden over treatment. "They’ve seen a lot of their fellow inmates die. Other than not wanting to go to prison, their next greatest fear is dying alone. They [inmates] see hospice as a solution."
According to the National Prison Hospice Association (NPHA) in Boulder, CO, of the more than 1,300 state and federal prisons in the United States, there are only 20-25 active hospice programs in prisons. Those numbers alone suggest a need for hospice care in prison. Consider also that many inmates die before being released, and hospices are confronted with a population of dying patients whose needs are not being met.
"Hospices should see this as a community service, serving a population that is underserved," says Fleet Maull, MA, PhD, founder and director of the NPHA.
McFatter encourages other prison officials to establish hospice programs by noting how Angola has redeemed itself from its past dubious reputation. "I was here 25 years ago when we were called the worst prison in the country and we earned it," he says. "If we can do this, anyone can."
Not your typical hospice
Typically, hospices work with prisons in an advisory capacity, says Maull. Rarely do hospices provide palliative care services within a prison. For security reasons, prisons generally frown upon outside contractors coming and going from prison facilities. But hospices can provide prison personnel with expertise and ongoing training so that prison officials can implement a hospice program of their own.
But hospices must understand that prison hospice programs have unique challenges that do not exist outside prison walls. "You just can’t take . . . the traditional hospice model and transplant it in a prison," Maull warns.
First, traditional hospice is geared toward providing care, support, and training in the home. Prison, on the other hand, is as far removed from a homelike atmosphere as caregivers will encounter.
Hospice prison programs must exist despite a number of limitations to ensure the security of inmates, staff, and visitors. In short, hospices need to design a program that is patient-focused, but accounts for a prison’s austere, institutional atmosphere and culture.
As an example, officials at the Federal Medical Center at Fort Worth, TX, adhered to three fundamental principles when it formed its hospice program:
1. Care. The program implemented palliative care and hospice principles. It uses an interdisciplinary team approach with staff physicians, nurses, social workers, and inmate volunteers.
2. Cost. The program needed to help reduce health care costs within the prison facility by focusing on palliative care and educating dying inmates about advance directives that include DNR orders.
3. Corrections. The hospice program cannot affect prison security. Logistical concerns, such as transfer in and out of the facility and increased family visitation, include policies and procedures to ensure security.
According to Maull, whose organization helped Angola prison officials design its program, the above formula is a good model to follow. Angola’s hospice program is similar, and its inmate volunteer program is an essential part of the program’s success.
Inmate volunteer program
Tillman says Angola’s inmate volunteer program is the difference between a working program and one that smacks up against the anger and mistrust inmates have for prison staff.
Volunteers are the hallmark of community hospice care — individuals giving a few hours a month to provide supportive care. While inmate volunteers provide the same kind of care, they are also called upon to assume caregiver status, much like a family member without the responsibility of dispensing medication. Because inmates mistrust and exhibit anger toward prison staff, inmate volunteers are in a unique position to care for their fellow prisoners.
"The success of a prison hospice is in direct correlation with how it uses its resources," McFatter says.
According to Tillman, inmate volunteers bridge the chasm between prison staff and inmates by providing:
• A feeling of security. As a terminally ill inmate declines in health and his or her ability to carry out activities of daily living, he or she fears for personal safety. The inmate volunteer can assist with activities of daily living, and ensure protection from violence and manipulation by other inmates.
• A sense of belonging. Dying inmates want to feel needed and not feel as if they are a burden. The loss of family ties may become the patient’s greatest loss. Members of the "altered community" of the prison environment become the dying patient’s "family" — even when the traditional family is present.
• A need to feel loved. Usually, even simple gestures are discouraged in a prison environment, but inmate volunteers are encouraged to touch a patient’s hand or shoulder to show empathy and to begin building trust.
• A need to discuss the disease and the dying process. Traditional prison roles as "captors" and "captives" dehumanize both patient and prison staff, and may convey the misconception that the patient does not deserve the same explanation given to patients on the outside. As part of their caregiver status, inmate volunteers are called upon to communicate the disease and dying process. By openly communicating through the volunteer, prison hospice workers can breakdown barriers of mistrust and anger.
It would seem that there is a limited pool of candidates to choose from when filling the volunteer ranks in a prison. But like any city or neighborhood, prison is a community, complete with service groups and organizations, and prisoners have exhibited leadership in those groups. At Angola, prospective volunteers are subjected to an extensive screening process and rigorous training.
Excluded from consideration are those inmates who have been convicted of crimes against children, to protect children who come into the hospital ward to visit a dying relative. Prisoners who fail drug screens are eliminated from consideration as well, along with prisoners who have had a history of wrongdoing while in prison.
Selection for service
The selection process begins with a letter written by the inmate to Tillman requesting an assignment to the hospice unit. Tillman passes along potential volunteers’ letters to the warden, security leaders, and mental health workers. Each approves or eliminates prospective volunteers based on their knowledge of the inmate.
The other half of the volunteer equation is training. Volunteers are put through a 40-hour training program. Because they go through so much training, says Tillman, inmate volunteers often excel beyond volunteers on the outside.
The training program includes education in topics such as:
• introduction to hospice;
• role of the volunteer;
• concepts of death and dying;
• communication skills;
• care and comfort measures;
• diseases and medical conditions;
• psychosocial and spiritual issues related to death and dying;
• the concept of the hospice family;
• stress management;
• bereavement;
• infection control;
• safety;
• confidentiality;
• patient rights;
• role of the interdisciplinary team.
The hospice program itself mirrors hospice in the outside world, but implementation requires a set of policies that may be entirely foreign to most hospice leaders. Maull says hospices and prison officials need to work closely together to establish policies that allow hospice care to address dying prisoners’ health, emotional, and spiritual needs without compromising security. (See criteria for admission, p. 86.)
Because patient care is paid for by the state-funded budget for prison health care, prison hospices do not receive reimbursement from Medicaid, Medicare, or private insurance funds, and do not face the same regulatory restrictions that outside hospices must deal with.
The Angola hospice houses patients in its 40-bed medical dormitory in the prison infirmary. The program is staffed by physicians, nurses, social workers, and chaplains who integrate hospice care among their other responsibilities for inmate health and well-being. Tillman is the only medical staff person employed full-time to provide hospice care.
Decision making is key
However a prison hospice program is funded and implemented, it should promote patient involvement in decision making, especially, Tillman says, when physical dependence on others increases.
Tillman says dying inmates are encouraged to view their remaining days as a time of self-review. "This may be the first time the patient is willing to accept responsibility for his actions, including his crime," Tillman says.
Other areas to consider include:
• How a person dies and the subject of advance care planning are monumental decisions, especially to a person who is told when to eat, sleep, and work on a daily basis. He may find the prospect of making those decisions overwhelming.
• The patient’s status as a ward of the state does not interfere with the patient’s right to make medical decisions.
• Policies should allow honest communication with family and caregivers, and confidence that the patient will receive the best possible care. Inmates traditionally view staff members as untrustworthy, and vice versa. This "us-against-them" prison environment makes honest, effective relationships more difficult to maintain. The inmate population may generally believe that the medical care its members receive is substandard.
According to Tillman, since the program’s inception on Jan. 1, 1998, 35 patients have been admitted to hospice care and 25 of those patients have died. Of the 35 who received care, 15 were diagnosed with various types of cancer; 10 were diagnosed with AIDS; five with end-stage cirrhosis; and the remaining five with diagnoses of various disease processes, including amyotrophic lateral sclerosis, cardiac disease, and chronic obstructive pulmonary disease.
Five of those admitted to the hospice were discharged because they had a remission of symptoms sufficient to allow them to return to their previous prison living quarters. In such instances, a discharge procedure is initiated with the patient’s agreement and with the goal of helping the patient resume his former activities as much as possible.
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