Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Hospice in Prison:

The Louisiana State Penitentiary Hospice Program

Tanya Tillman, RN

Tanya Tillman, RN, is the hospice case manager and inmate volunteer coordinator at the Louisiana State Penitentiary Hospice Program in Angola, Louisiana. In the following article, she describes the major features of the program, which was honored on May 2, 2000 with the Circle of Life Award from the American Hospital Association. In addition, she offers recommendations for others seeking to set up or sustain a hospice in a prison environment. [Citation: Tillman, T. Hospice in Prison: The Louisiana State Penitentiary Hospice Program. Innovations in End-of-Life Care, 2000;2(3), www.edc.org/lastacts]

The Louisiana State Penitentiary Hospice Program is an interdisciplinary team program designed to provide palliative care to inmates housed at the state's all-male, maximum security prison at Angola, Louisiana. Known as "the farm," the Louisiana State Penitentiary (LSP) is located on 18,000 acres of prime agricultural land 53 miles northwest of the state capitol in Baton Rouge and is surrounded on three sides by the Mississippi River. Currently, 5,108 men are incarcerated there.

The majority of these men are serving long sentences, including life in prison. In Louisiana, a sentence of life in prison means life without the possibility of parole. An estimated 85 percent of the men who live in the LSP will die behind bars.

In January 1998, a hospice program was established at the penitentiary to meet the needs of terminally ill prisoners who choose to have palliative care near the end of life. The hospice program is part of the prison health system. Hospice patients are housed in a forty-bed medical dormitory in the prison infirmary. The interdisciplinary care team includes members of professions traditionally represented in a hospice team in the "free world", including physicians, nurses, social workers, and chaplains, as well as bereavement, dietary, and ancillary personnel. One of the innovative features of the LSP hospice program, which is unusual even among prison hospices, is the extensive participation of specially trained inmate volunteers, who provide dying prisoners with emotional support, companionship, and assistance with activities of daily living. They also assist hospice staff with program development.

The inmates who volunteer for the hospice program have a personal investment in its success. Because of the length of their incarceration (sometimes 10, 20, or 30 years), many inmates have lost all outside contact with their families. The prison at Angola is their home, their community, and other inmates have become their family. Therefore, many inmates see their participation in the hospice program as a way to prepare for how they themselves will die or as a means of giving back something to others, a way of repaying their debts.

Another unusual aspect of the hospice program is the support and participation of many prison security and classification personnel.¹ The relationship between those charged with maintaining security in prisons and those who are imprisoned has long been characterized by mutual suspicion and distrust. Prisoners' distrust extends to medical personnel, who are not generally perceived as acting in incarcerated patients' best interests, but, rather, as another arm of the prison system controlling their bodies and persons. This attitude of "us" against "them," built up over many years and historically rooted in the use of brutality as a primary tool of control in the prison, is difficult to overcome.

In an environment in which the primary function of the facility is at odds with personal choice, comfort, and family unity, the LSP Hospice Program offers inmates, medical care providers, and security personnel a rare opportunity to work together in a "neutral zone", with a common goal of providing humane care to the dying. The medical staff, security staff, and inmate volunteers have united around a set of integrated goals:

• to provide quality, compassionate end-of-life care to our patients and their families;

• to redirect efforts at end of life to palliation of distressing symptoms rather than extension of life (at all costs) as indicated by vital signs;

• to improve the institution's previous practice of withholding a patient's right to make health care choices for himself;

• to recognize and acknowledge those relationships formed by the patient that he finds meaningful and life-affirming.

The first two goals are similar to those of any community-based hospice program in the "free world". The latter two goals reflect and respond to the particular constraints imposed by the prison environment.

In its goals, philosophy, and modes of operation, the LSP hospice program is in keeping with the premise that criminals are incarcerated as punishment and not for punishment. Modern prisons are not designed to be places where substandard care and brutality are the mechanisms of punishment. Rather, the mechanism of punishment is the removal of the offender from society, his loss of freedom, and the structure and restriction of his activities. For a person serving a sentence that is less than life, there also is a societal expectation that the prison experience will modify his behavior and decrease recidivism. Based on my interaction with the public, I believe that the average citizen really does not have an idea of what prison life is like. Many people have told me that they would describe a prison as a place where men are sent to live in cages, fed meager rations of food, and frequently subjected to brutality from staff as part of standard operating procedures. Although the training of prison employees includes necessary information about guarding against manipulation by inmates and the proper use of necessary force, there are standards of care governing every aspect of prison life. These standards are based on general community guidelines as predicated by state and federal law.

The average citizen also has a misconception about who and/or what a prisoner is. To redress this misconception, I might ask someone to envision a moral continuum of human beings, ranging at one end from everyone's idea of a compassionate, spiritual family man who gives time and effort to improve his community to, at the other end, their idea of the most despicable, violent person they have ever heard of or met. I might then ask, "Which type of person would you most likely find in prison and which type would you most likely find living in your neighborhood?" The answer might seem simple, but it's not. In my experience, one would be no more likely to find that each and every inmate incarcerated today falls at the negative extreme of the human continuum than to find each and every "free" person at the positive extreme. One would be likely to find a mixture of both in each environment. Moreover, the same factors that motivate the average citizen to improve, often motivate the incarcerated citizen to improve. Although an incarcerated person is deprived of many of the rights of a citizen, he is still a member of a community, albeit an "altered" community.

In keeping with the community view of the prison environment, for many years the LSP administration has sanctioned the operation of such inmate organizations as Toastmasters, Alcoholics Anonymous, the Angola Civics Project, and Human Relations clubs, as well as various religious organizations. These groups exist to meet the societal needs of the members of the inmate community and operate much like Rotary Clubs or Moose Lodges. A rarity in many correctional facilities, these inmate clubs should not in any way be confused with gangs or gang activity. They have a formal structure with by-laws, missions, and officers, and must have a prison staff sponsor to operate. Through support for individual hospice patients and the hospice program as a whole, the clubs are helping to ensure the acceptance of the program by the inmate population. In addition, this kind of prison community participation is an important mechanism to assist with the hospice patients' social functioning and well-being.

The LSP hospice provides an opportunity for men who live in the altered community of the prison and who have worked to move themselves closer to the positive end of the moral continuum to show themselves in new light as compassionate citizens who give their time and effort to improve their community. The program uses the institution's respect for prison culture and community to maximize the positive effects of personal change.

In the following sections, I describe some of the major features of the LSP Hospice Program, how it started and is sustained within the confines and culture of prison life, and how the challenges to implementing a hospice program within a maximum security prison environment are being met.

Implementing the LSP Hospice Program

From the outset, the LSP hospice has had high-level administrative support from the prison warden, Burl Cain, and the assistant warden for treatment, R. Dwayne McFatter. After reading about hospice in the newspaper and in response to interest expressed by two longtime community-based hospice staff, Carol Evans, a social worker, and Colleen Lemoine, a registered nurse and hospice manager then working at the state-affiliated University Hospital Community Hospice in New Orleans, Warden Cain asked Ms. Evans and Ms. Lemoine to research the feasibility of setting up a hospice on the penitentiary grounds. The background research included visits to some of the few existing prison hospices in this country, including one in Texas. Based on their findings and recommendations, Warden Cain then asked Assistant Warden McFatter to work with Ms. Evans, Ms. Lemoine and the prison staff to set up a hospice program at the Angola prison.

The hospice program was started and is maintained under the existing state-funded budget for prison health care. Patients admitted to the hospice program, therefore, are cared for without the benefit of Medicaid, Medicare or private insurance funds. The hospice houses patients in the existing forty-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.² As a registered nurse who provides direct patient care as well as serving as the hospice case manager and inmate volunteer coordinator, I am the only medical staff person employed full-time to provide hospice care.

Since the program's inception on January 1, 1998, 35 patients have been admitted to hospice care and 25 of these patients have died. Of the 35 who received care, 15 were diagnosed with various types of cancer (predominantly lung), 10 were diagnosed with AIDS, 5 with end-stage cirrhosis and the remaining 5 with diagnoses of various disease processes, including amytrophic 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 assisting the patient in resuming his former activities to the degree possible.

Patient Referral and Admission to the Hospice Program

The main source of formal patient referral to the hospice program is the attending physicians who are assigned to each inmate incarcerated at LSP. Informally, the hospice may receive self-referrals from inmates. As part of advance care planning with inmates who have received diagnoses of terminal illness, we encourage these inmates to explore the availability of hospice services. Nursing staff plays an important advocacy role for our patients, who address this issue prior to formal referral.

Although the LSP hospice program occasionally receives inmates from other prisons in Louisiana, we discourage other institutions from transferring dying patients to our institution unless that facility cannot provide the medications necessary for adequate symptom management. Largely because sending patients to our institution means taking them away from the social support systems they have formed over the years, we prefer to share resources and assist the staff of other institutions in determining ways they might alter their current operating procedures to provide better end-of-life care in their own facilities. Currently, one other Louisiana correctional facility has established a hospice program, two others are under active development, and other penal institutions are exploring the issue.

Prisoners who are in the terminal stages of a life-threatening disease or condition are eligible for hospice care. The criteria for admission to hospice care at the penitentiary are listed in Table 1. Among the criteria are that the patient must have a diagnosis of a terminal illness or other condition with a life expectancy measured in weeks or months; a prognosis of less than six months; and no further solely curative treatment of the disease is feasible or the patient refuses such treatment. We only admit a patient when we are confident that he understands the hospice philosophy and that our focus is on comfort rather than cure, and when the patient and staff are satisfied that our goals are congruent. The patient can have any person he wishes present for the admission process, including counsel if he so chooses. We then help him share his decisions with any family members he wishes to involve. Because inmates at our facility are wards of the state, family members or other health care proxies are not allowed to serve as surrogate decision makers for our patients. However, we encourage the patient's family to participate with (rather than instead of) the patient in the formation of the plan of care.

Currently, it is the practice of our institution to have a patient sign a Do-Not-Resuscitate (DNR) directive as a condition of participation in hospice. We are aware that requiring a mandatory DNR order is subject to question by outside professionals who may be concerned that this puts the patient at risk for coercion or limits his ability to make other medical decisions. Our decision to require the DNR order is based on several factors, which are thoroughly explained to the patient prior to admission to the hospice program. Among the reasons for requiring a DNR order is that our prison does not have a hospital on site, even though we have doctors and nurses available twenty-four-hours a day. We do not have twenty-four-hour laboratory or X-ray capabilities nor do we have cardiac monitoring on our nursing units. We cannot administer blood products. Unless the patient has signed a DNR order, institutional policy requires that we transport any patient who is in serious or critical condition to an outside facility for stabilization, even though the nearest hospital is twenty miles away. Thus, if we were to admit a patient for hospice care without a DNR order, as his condition deteriorated we would have to transport him out of the environment in which we can ensure him the greatest psychosocial support. Due to custody requirements, at an outside hospital the patient may be cuffed to a bed during his last hours, and family members may not be allowed to visit him nor to stay there with him until he dies.

At our facility, admission to the hospice program does not prohibit patients from receiving surgery or blood products if recommended by the specialists who are following their care. In addition, and in contrast to some traditional hospice programs, we do not prohibit chemotherapy and/or radiation therapy if the attending physician feels that the treatment is in any way palliative. Even if the treatment is only emotionally palliative, insofar as it helps a patient feel in control of his disease, we support and advocate for his right to receive it.

Sometimes an outside hospital physician will offer a patient a cure-oriented treatment (chemotherapy or radiation therapy), even if the success rate is minimal. We are honest with the patient about the likely outcome of pursuing a given treatment and help him arrive at a decision with which he is comfortable. We try never to take away his hope. Few of our patients choose to receive radiation or chemotherapy, but in one case, a patient had an unexpected remission after receiving chemotherapy and was discharged from hospice care back into the prison population.

Radiation and intravenous chemotherapy are provided, usually on an outpatient basis, at a charity hospital in Baton Rouge. The patient is sent by ambulance to the hospital for treatment and then returned to our facility. If the condition of one of our patients deteriorates while he is outside the prison for a follow-up or routine treatment at a medical facility, we have the option to request that he be sent back to LSP so that he might be surrounded by friends and family during his last hours.

Providing a Safe Space for the Care of Hospice Patients in the Prison

Living facilities at LSP consist of dorms and camps, which operate separately from one another in some ways, under different chains of command. However, they operate within a common administrative structure under the overall authority of Warden Cain and his administrative staff. The inmates are assigned to these dorms and camps based on security classifications and medical needs. When a patient is admitted to the hospice program, he is reassigned to live in the forty-bed medical dormitory in the prison infirmary.

The medical dormitory was established to respond to two main needs. First, there is currently no safe mechanism to administer narcotic analgesics in individual living areas in the prison. Legal guidelines and safe practices in a prison environment prohibit inmates from controlling or administering medications to one another. Second, when a patient becomes debilitated to the point that he requires maximum assistance with activities of daily living, his safety is at risk in some areas of the penitentiary.

Unlike a hospital unit designed for acute care, the medical dormitory is set up to meet patients' recognized needs for socialization with other inmates and his "outside" family. An innovative aspect of the program is that rather than being moved automatically to separate visiting areas, patients may receive visitors at the medical dormitory. A patient is also allowed to attend church and social functions in another area of the prison if his health permits.

The Role of the Inmate Hospice Volunteers

The thirty-four-member hospice volunteer staff consists entirely of inmates. They participate without inducement of monetary reimbursement. As one volunteer put it, "What I get from this, money can't buy." An extensive screening process has been established to provide members of the inmate population with an opportunity to participate while choosing those persons who seem likely to have the most to offer another human being.³ Only those who meet certain criteria are asked to participate. Offenders with recent drug convictions, serious disciplinary write-ups while incarcerated, or previous convictions of sexual crimes against children, and those who are housed in administrative segregation, are prohibited from participating.

We ask any inmate who wants to volunteer to commit to do so for at least one year. After a year's service, he can withdraw in good standing and can cite his participation as a volunteer to the parole board.

Hospice volunteers are provided with forty hours of initial training, based on the topics listed in Table 2. The training is provided in five eight-hour days during one week. Because we believe it is important to maintain community standards as established in the "free world", we ask hospice professionals from area hospices to participate, as well as prison staff, in giving instruction and sharing ideas and experiences. The four-hour monthly volunteer meeting is a time to discuss program issues, problem solve, and provide instruction to the volunteers from both prison staff and outside guests, who provide continuing education through in-services.

Areas of volunteer participation include assisting patients with activities of daily living, providing inmates who are hearing impaired with interpretation, and translating and interpreting for Spanish speakers. Volunteers also provide program support, such as clerical work, errands, photography, design of educational materials, and peer education. But their most important role is to be a companion and friend to the dying patient. Inmates in our facility believe and often express the idea, "If an inmate or a family member isn't with you when you die in this prison, then you die alone." This is often no reflection on the care a person has received, but rather a cultural aspect of socialization within the prison walls.

Not only do different racial, ethnic, and religious subcultures make up the inmate population, the very fact that these men are incarcerated from the rest of the world brings about a subculture all its own. The common circumstance of incarceration is a stronger tie among these men than the divisive force of any prejudice that exists within the prison world.

The inmate hospice volunteers at times become mediators, especially for the patients who have been imprisoned the longest and are therefore the most steeped in the prison culture. A patient will often reveal needs and thoughts to an inmate volunteer that he would not reveal to a "free" person caring for him. As Hospice Volunteer Michael Smith put it, "How can you tell me about doing time when you've never been there? I know that I might have to die here." The volunteer often brings this concern to the team and as a result, the outcome for the patient is improved greatly.

Encouraging the involvement of inmate volunteers in the prison hospice has made the difference between success and failure of our program. Moreover, participation in the hospice experience has provided unique opportunities for emotional and spiritual growth for the inmate volunteers. Although prison life offers other means for inmates to learn to be responsible or to interact socially in positive ways, for example, through attending school, participating in church groups, or becoming affiliated with the inmate clubs, only the hospice experience teaches inmates about respect for life. Many of the inmates convicted of violent crimes have said that their first experience with death was that of their victims, or the violent death of a friend or enemy. As hospice volunteers, they are exposed to death as a natural part of life and can understand that it is possible to have a "good death"⁴ surrounded by loving friends and family.

Involvement of Security and Classification Officers

Another seemingly unlikely partner in the improvement of end-of-life care is custody staff, consisting of security and classification officers, who have become important members of the hospice team because of the environment in which we live. It can be truthfully said that our program's success can be attributed to a strong team effort. Custody staff, in particular, must and do evaluate their own roles in providing improved end-of-life care in the prison environment. To a large extent, our program works because of security and not in spite of it.

When the hospice program began, it was necessary to establish a "neutral zone" of compromise in which security and health care staff could come together in the decision-making process to ensure that the primary goals of each discipline are met. This process led to the development of more integrated goals. We work to accomplish our joint goals and to maintain this area of compromise.

Security officers can effect change quickly and efficiently, or they can inhibit the provision of services simply by the way in which they manage movement of inmates within the institution. Prisons are quasi-military operations and change is often slow and laborious. Having security staff who participate in the improvement of end-of-life care has had astounding positive effects within our institution.

To illustrate, "John," a fifty-five-year old cancer patient, was referred on a Thursday afternoon for hospice services. On Friday morning, another team member and I went to assess the patient and discuss hospice care with him. We found him to be debilitated and fatigued, and although he could understand and communicate with us, he was simply too tired to engage in any meaningful discussion of hospice philosophy and the extensive questions and answers required in the intake process. It was evident that John had taken a dramatic turn for the worse in the past twelve hours, and we had little time to do anything meaningful for the patient unless we could identify his immediate needs. We asked him if there were one thing, anything, we could do for him at that very moment. He told us he wanted to see his brother-in-law, who was also an inmate at our facility. All he could tell us was where this man lived in the prison and his "inmate nickname" and then he fell asleep. I went back to my office with little to go on other than that I was looking for an inmate called "Face Maker" who lived in a neighboring dormitory.

A security colonel making his rounds in the medical facility stopped in my office to say hello and asked me if there were anything I needed or anything he could do for the program. With no more to go on than the information I gave him, in less than thirty minutes he had John's brother-in-law identified, located, pulled off his job assignment, and transported to the patient's bedside. Before he died, John was able to spend three hours with his brother-in-law as he requested.

Although every man in the prison population has an opportunity to be reviewed for approval to visit someone in the hospice program who asks for them, at best it still takes several days for the request to be processed. It was the teamwork with security staff and the willingness of a security officer to step outside of his traditional role to meet the need of a dying man that accomplished John's last wish.

The hospice interdisciplinary team (IDT) develops the patient's plan of care with input from the patient and his family. Once the patient identifies what is distressing to him, palliation is provided by prioritizing the needs for intervention. In this process, the medical staff take their cues from the patient, who is encouraged to express his wishes and, to the extent possible, to retain some control over the plan of care. On an ongoing basis, the patient's wishes are re-evaluated, and he is encouraged to communicate any changes in his wishes to the staff.

Formal symptom assessments are made twice a day by nursing staff and include physical, emotional, spiritual, psychological, and social functioning. The team meets weekly to re-evaluate the plan of care and to alter it when necessary to improve management of symptoms or meet the patient's other needs.

Social workers are available on site twenty-four hours a day to work with the patient and his family and to provide individual or group counseling. The social worker makes the initial contact with family members identified by the patient and is often the person most successful in reuniting estranged families.

In my role as the hospice case manager, I am responsible for coordinating the provision of services identified through the plan of care to the patient and family. It is my responsibility to interact with the hospice patients on a daily basis, assist the interdisciplinary care team to provide continuity of care, and coordinate services and information with team members including, but not limited to, the attending physician and the inmate volunteers. It is often necessary to mediate problems that arise between medical staff, security staff, and inmate volunteers to maintain the integrated goals that underlie our program.

The hospice medical director functions as the attending physician for each hospice patient, with a primary focus on pain and symptom management. This physician helps to educate other team members who may feel uncomfortable prescribing or administering large doses of narcotics for pain management.

Within the prison culture, being able to deal well with physical pain is considered to be a mark of strength. For this reason, prisoners may not admit to feeling pain, and many times the nursing staff have to rely primarily on nonverbal signs to assess physical pain. This is at direct odds with the "drug-seeking behavior" that many people (even those working in a prison) believe might occur among men who are perceived to have a higher incidence of drug abuse than the general "free world" population.

The types of narcotic analgesics available in our facility vary little from what you would expect to be available in a hospital or through a community hospice program. The differences lie mainly in the mode of administration. Modes of administration that are more easily tampered with, such as analgesic patches and lollipops, are not used. Intravenous administration of narcotic analgesics is provided on rare occasions only by IV push. Our facility does not currently have PCA pumps or any type of lock-out intravenous pumps. Sustained release narcotic analgesic pain medicines are used frequently in spite of the risk for misuse. It is impossible in any environment to prohibit misuse of medications. We recognize this and take reasonable precautions, but we have not withheld pain medicine from any patient due to security concerns or issues concerning long-term drug abuse. Medications specific for neuropathic, muscle, and bone pain are also readily available, as well as medications for the pharmaceutical management of other physical and mental health symptoms.

By necessity, prison inmates are separated from society and family members. This means that at times of crisis due to grave personal illness, when they need the support of others most, they are often isolated. The LSP hospice's focus on palliation of symptoms, including emotional, social, and spiritual needs of dying patients, has led to efforts to reunite families that have been out of touch for years, as well as to help patients maintain friendships with other inmates. As a consequence, the Angola prison hospice has the most liberal inmate visitation policy of any in the country. Because current parole and compassionate release laws in Louisiana mean that few terminally ill inmates will be released solely because they are dying, the hospice program tries to bring "home" to them, through providing special items, music, pictures, visits, and within the constraints of prison security, whatever patients identify as "life affirming" experiences.

Our experience has taught us that social needs seem to far outdistance the other needs identified by our patients and their families. The years of separation from family do not dampen the patient's need for or hope that his "free world" family will rally around him during his illness. Sometimes we are very successful in helping bring this about. In any event, the issues surrounding years of family separation and estrangement only strengthen the importance of helping the patient to maintain his support systems within the institution and to honor them.

Because inmates are wards of the state, the prison staff functions as primary caregivers to the hospice patients. A prisoner's family and friends sometimes express frustration that they cannot take loved ones home near the end of their lives. To address their frustration, hospice staff strive to maintain contact with family members (as identified by the patient), communicate changes in the plan of care or the patient's status to them, provide feedback that allows them to feel secure that their loved one is being well cared for, and incorporate the family into the caregiving process whenever possible if both the patient and family wish. To this end, we allow families to be in contact with hospice staff members twenty-four hours a day.

Prior to the creation of the hospice program at Angola, medical staff were allowed only to notify a family in the event that a death was expected. Visitation schedules were very limited, and the remote geographic location of the penitentiary sometimes deterred families from making the effort to visit. Now, staff members are encouraged to interact with the family and, if the patient wishes, see them as part of the unit of care from the time of the patient's admission to hospice. As part of the hospice program, we partnered with a church organization that provides free rides to family members who have no other way to get to Angola. When a patient is dying, family members, including children, are allowed to be with him around the clock. They frequently share this vigil alongside inmate friends and "family" and inmate volunteers. This is facilitated through the cooperation and support of the prison security personnel, who must assume added responsibility for protecting the family within a secure environment.

The LSP hospice has a formal bereavement program that starts with a bereavement needs assessment early in the hospice admission process in order to begin anticipating future needs. The bereavement program follows a hospice patient's family for up to one year following his death and is tailored to the needs of family members. Bereavement support to family includes writing them cards and letters, telephoning, and making referrals to counselors outside this institution.

Many of LSP's hospice patients have been buried on the prison grounds because the family does not have the financial means to bury them. As a result of the hospice program, funerals at the prison have improved and are more in keeping with an individual's faith and with "free world" community standards. Friends and family, including both inmates and "free" persons, are allowed to attend the funeral and arrangements are made for gravesite visitation whenever a family member requests it.

Hospice volunteers assist with the preparation of the unembalmed body for burial on prison grounds. The body is placed in a handmade satin-lined casket made by inmate craftsmen, who make each one with love and care. One of the casket makers reported in an interview, "I make them all the same and I do a good job. I never know if the casket I'm working on will be mine." Inmates participate as pallbearers. Each role is filled by a man who see the process as part of his own closure. Their close proximity to death, even a "good death," necessitates an expanded bereavement program to include the inmate volunteers. Plans are under development to have inmate chaplains help prison staff solidify the support system for those inmate volunteers at greatest risk for burnout.

Sometimes an "outside" family member will want little or no contact with prison staff after the patient's death because the death itself is seen as closure to the period of incarceration. Continued contact with prison personnel is sometimes seen as a continuation of that negative experience. In those instances, the family's wishes are honored.

A yearly memorial service is held to celebrate the lives of hospice patients who have died. The service is planned by the inmate volunteers and includes participation by the prison choir. Currently, by necessity, the memorial services are held in an area inaccessible to outside family. However, when a hospice prison chapel, now under construction, is completed, we plan to invite outside family to the memorial services, which will be held in the new chapel.

Barriers to Implementing a Prison Hospice Program

In undertaking the LSP hospice program, we encountered and, to a large extent, overcame several barriers, each of which is addressed below.

A major hurdle we encountered when we embarked on the creation of our hospice program was the prejudice against an inmate's right to health care congruent with community standards. Employees and citizens often believe that an inmate "doesn't deserve to die comfortably and with dignity when his victim didn't." Overcoming this hurdle remains an ongoing battle. We have seen, however, an acceptance of hospice care by staff who previously opposed it because they held this belief. Only education will help society conceptually separate the men from their crimes.

Another large hurdle was the misconception that providing hospice care would pose an unacceptable risk to the security of the institution. Over time, we have learned that the inclusion of security staff as members of the interdisciplinary hospice care team facilitates the safe provision of hospice care in the prison environment. The security of the institution remains only as good as it was before program inception.

Prejudice against Use of Inmate Volunteers

There was great resistance in accepting the inmate volunteers as team members. This problem has been eased because the inmate volunteer coordinator is on staff and serves as a liaison among the inmate volunteers, other health care providers, and the security staff. Although the inmate volunteers are not yet accepted by everyone, the general consensus is that they are an asset and the primary reason for our program's success.

The provision of medical care to prison inmates brings with it a host of ethical and legal concerns. LSP does not currently have ethics consultants employed to mediate end-of-life issues. Ethical issues are mediated primarily by the interdisciplinary hospice team, with input from palliative care professionals from other hospices in our state.

Some hospice professionals working outside correctional settings fear that prison hospices will become dumping grounds for hard-to-treat patients who would otherwise benefit from curative care but instead are relegated to "designated death units."⁵ To prevent this, our patients are seen by a specialist in the applicable area of practice prior to referral to hospice care. In addition, our practice of evaluating each patient individually regarding the provision of chemotherapy and radiation therapy provides a check-and-balance system to ensure the best outcome for the patients in our facility.

The concept of patient autonomy is difficult to uphold in the prison setting. The loss of autonomy is a natural fear and an expected result of incarceration. For example, one of the most dramatic and significant losses relative to autonomy is that of free choice of one's health care provider and medical facility. Safety and security practices do not allow inmates the ability to leave the institution to see the physicians of their choice, nor can they have their care provided at a specific facility other than those that contract for services with this prison.

We encourage inmates to exercise their autonomy through advance care planning. Advance directives are explained to patients both in writing and verbally by the attending physician. Making an advance directive at the time of admission for hospice care allows the patient to specify those treatments or actions he wishes to have withheld. The nursing case manager and a social worker participate as patient advocates in the process of advance care planning with a patient to ensure that he has a thorough understanding of the concept of advance directives and has made his wishes known to the medical staff.

To ensure that the inmate's rights are protected and that his voice is heard, the LSP has an Administrative Remedy Procedure, which is a formal three-step legal process, which inmates can initiate themselves or have inmate counsel initiate on their behalf. It is simple, costs the inmate nothing, and is often a precursor to more traditional litigation. The hospice program has a specific grievance procedure for its patients and their families to address any problems that may arise. Patient satisfaction surveys are also an important part of our evaluation of services and a tool for improving patient care.

These were initially perceived to be a major barrier to setting up the hospice. We do not have a separate budget and were instructed to build a program by necessity without any funds. For instance, no special unit was built, and staff was not added. Care is provided to hospice patients in existing areas by existing staff.

Given the budgetary constraints, we had to be very creative in finding ways to provide for the needs of the hospice program, and enlisted the support of our inmates and the outside community. The inmate organizations donated a refrigerator, special treats for the patients (such as pizza and ice cream) that they might not otherwise receive, books for our hospice library, and various personal care items.

In addition, we made formal and informal linkages with other medical facilities and community hospices in Baton Rouge and New Orleans, which provide preventive, acute, chronic care, and end-of-life care. Inmates also have access to specialty clinics that are held by staff physicians and contract physicians from the Louisiana State University medical facilities. The University Hospital Community Hospice in New Orleans provided the LSP with both initial hospice program planning as well as staff and volunteer education. They continue to provide education, support, and networking opportunities to the prison hospice staff. Our base of support now includes the Louisiana Hospice Organization and many of its partnering programs. Their mentoring, which includes sharing of materials and on-site education of our hospice staff, has been provided to us as a community service without any cost to our institution. The Prison Hospice Project was established by two community hospice professionals to raise money for the LSP hospice chapel, now under construction at the prison. Project Lazarus, a nonprofit residential AIDS facility in New Orleans, donates equipment they have in surplus. This practice has been followed by nursing homes and hospices across Louisiana under the direction of Jamey Boudreaux, executive director of Louisiana Hospice Organization.

While it is true that few guidelines govern prison hospice care, it has been our experience that the best measure of success is through feedback from the patients and their families. A Quality Improvement Program was established within the penitentiary, which solicits feedback from patients, families, and the inmate population through letters, verbal testimonials, videotaped reflections, and patient and family satisfaction surveys.

We strive to provide care that meets community standards. Currently, we are preparing for licensure review by the Louisiana Department of Health and Hospitals. Although this is not required by the state for our institution and is usually sought simply as a means for obtaining Medicare reimbursement for hospice services, we are not eligible for those funds and seek licensure only as a means to ensure quality of care consistent with community standards. Licensure will not prohibit us from continuing our current practice of allowing treatments deemed appropriate by medical staff, including provision of chemotherapy or radiation therapy.

When we began our program, we really did not envision the full scope of its impact. Our primary concern was to improve the lives of our dying inmates. However, we have seen that the experiences generated through the hospice program touch the other men who come in contact with it, the volunteers, the friends, the staff and the inmate family. Hospice care touches the families who have lost their sons, fathers, and brothers behind the gates of this prison. This has made me aware that they are victims too. I'm rarely asked anymore why I do this work or what makes me think the men I care for "deserve" dignified, palliative care. I hope it's because people look at our program and understand, just one person at a time, that the care inmates receive while in our charge says much more about society than it does about the inmates.

One outcome of the hospice program is that now there is less distrust of the medical staff by inmates. This should result in fewer frivolous lawsuits against the institution.

The hospice program has had an impact not only on dying prisoners and their family members outside the prison walls but has also touched other inmates who come in contact with the program, including volunteers and the patients' inmate "family" and friends. By respecting the dignity of the inmate, regardless of his crimes, and by offering humane care to both inmates and their families, the LSP Hospice Program has the ongoing support and participation of the inmate population and many of the security staff.

Our inmate volunteers continue to be our major source of strength and are our greatest hope for continued growth. They are the heart of the care we provide.

Persons who wish to provide hospice care in prison settings may feel more confident in knowing that delivering quality care in prisons is possible and can be accomplished without added funds.

Here are some things to keep in mind:

• Remember that your most valuable resources are your people and the ideas they contribute.
• Get backing from the highest level of prison administration.
• Incorporate security staff into every aspect of the program.
• Network with your local hospice care providers. In many instances, they are not aware of your need for assistance. Our program would not exist without the interest and dedication of community partners.

• Be creative. What works for one institution may not work for another.

There are now many different models of prison hospice. Programs that meet the general guidelines of the National Hospice Organization and correctional organizations such as the American Correctional Association and the National Commission on Correctional Health Care can be tailored to meet the needs of different prison patient populations and different institutions. Contact the National Prison Hospice Association and Volunteers of America (the GRACE Project) to learn more about how different institutions have built successful prison hospice programs. [See the Resources and Tools section of this journal for website links to these organizations and access to tools that can facilitate your work in implementing a prison hospice program.]

References

1. Classification personnel are prison officials who work with security personnel to assign inmates to living areas, job assignments, and custody status. These officials work closely with a variety of prison boards, including job boards, custody boards, and hospice boards.
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2. See "The Psychological Needs of the Terminally Ill Patient in a Prison Environment," a tool adapted by Tanya Tillman from World Health Organization Cancer Pain Relief and Palliative Care: Report of a WHO Expert Committee, Technical Report # 804. Geneva: World Health Organization, 1990.
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3. See Establishing an Inmate Hospice Volunteer Group by Tanya Tillman for details on criteria for volunteer selection and other elements to consider when designing a hospice program in a prison.
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4. Webb M. The Good Death: The New American Search to Reshape the End of Life. New York: Bantam Books, 1997.
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5. Dubler NN, and Heymann B. End-of-Life Care in Prisons and Jails. In: Clinical Practice in Correctional Medicine. M. Puisis, ed. St. Louis: Mosby, 1998. pp. 355-364.
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