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

Editorial

Death is no stranger to prisons. Inmate suicides, homicides, and executions account for over 300 deaths a year.¹ Prison is also "home" to seriously ill inmates, expecting to face their final days in confinement.

With longer sentences and limited use of medical parole and compassionate release, the number of terminally ill inmates is expected to grow as the 85,000 federal and state inmates age 50 and over "age in place." Compounding this, while the number of AIDS deaths has dropped in the last few years, the rate of AIDS cases continues to be high.²

Over 2,500 inmates died of AIDS and other natural causes in 1997.³ Yet, few prisoners actually die "inside the walls" of the prison. "Traditionally, there has been great discomfort and reluctance in allowing death to occur on-site for fear that the death would be equated with neglect. Often to avoid potential legal, ethical, and medical complications facilities have found it easier to send all dying patients out of the facility."⁴ As one correctional professional explained, "Inmates are expected to go to the hospital ‘in shackles’ to die, and not die behind bars."⁵

But is there an alternative? Can quality end-of-life care be provided behind bars? The Circle of Life Award-winning Louisiana State Penitentiary Hospice and a growing number of other prison hospice and palliative care programs clearly demonstrate that it can be. This article reviews the history and context of prison hospice programs and shares findings and observations about promising practices, on-going challenges, and unresolved dilemmas.

In the mid-1980s, the number of inmate deaths, especially those resulting from HIV/AIDS, rose dramatically. At the prodding of inmates, chaplains and other correctional professionals, corrections administrators began to respond. In 1987 the U.S. Medical Center for Federal Prisoners, Springfield, Missouri, opened a prison hospice program; a few months later a hospice was established at the California Medical Facility at Vacaville. A decade later, 20 jurisdictions (both state and federal) reported formal hospice programs either in place or under development, and another 12 were considering the development of hospice programs.⁶ At least three jails now have hospice programs.

Providing quality end-of-life care in prisons is not a simple undertaking. A number of characteristics of America’s prisons combine to pose enormous challenges:

• Prisons promote conformity to administrative rule rather than allowing for individual choice.
• Crowded conditions and the sheer scale of prison facilities diminish opportunities to treat inmates as individuals and to involve families.
• Concerns about drug abuse restrain efforts to provide state-of-the-art pain management and symptom control.
• Concerns about liability and litigation create pressure to use aggressive treatment even when a patient does not elect it.
• Communication and delivery of services are complicated by the need to involve correctional personnel who must emphasize security and institutional efficiency.
• Treatment plans are frustrated by crowding and inmate classification.

To increase understanding of current correctional end-of-life care practices and to develop guidance and support for future programs, The Robert Wood Johnson Foundation’s Excellence in End-of-Life Care program funded the GRACE (Guiding Responsive Action in Corrections at End-of-life) Project in late 1998. A collaborative effort of correctional and hospice organizations, led by Volunteers of America, the project collected information on formal end-of-life care programs in the Federal Bureau of Prisons and 14 state departments of corrections. A diverse range of practices came to light, as well as some consistent elements.⁷

Through a series of meetings and visits to prisons, the GRACE Project identified what practitioners consider the most challenging issues for prison end-of-life care programs. These include:

• Pain and symptom management. The challenges include the attitude of health care and security personnel about the use and abuse of narcotics; prison formularies that severely limit available medications, possibility of theft and trafficking, and assurance of effective dosages.
• Family visitation and involvement. The challenges include the identification and reunification of families; the definition of other inmates as "family" and arrangements for their visitation; visitor access to inmates who are unable to be transported to visitation areas (especially for children), and extended and off-hours visitation.
• Training. The challenges include orienting and training a diverse group that includes medical and nursing staff, security and other administrative staff and volunteers; changing negative staff attitudes; adjusting staff assignments; and conflicting demands for staff time.
• Inmate isolation. The challenges include care for high security level inmates; transfer of inmates from one facility to another to access the program; and lack of family or inmate-family.
• Volunteer involvement. The challenges include securing administrative approval and security staff support for involvement of inmates as volunteers, as well as community volunteer engagement.
• Attitude: The challenges include creating what Tanya Tillman refers to as a "neutral zone" where anger, fear, and prejudice of inmates and staff can be set aside.⁸

The project also compiled a profile of program components that constitute best practices. These practices are reflected in the End-of-Life Care Standards of Practice for Inmates in Correctional Settings, developed by the GRACE Project; and will be supported with resource materials. These practices include:

• Involvement of inmates as volunteers
• Increased visitation for families, including inmate family
• Interdisciplinary Team, including physician, nurse, chaplain and social work, at a minimum
• Comprehensive plans of care
• Advance Care Planning
• Training in pain and symptom management
• Bereavement services
• Adaptation of the environment and diet for "comfort"

The group also observed that the most successful programs, like the Louisiana State Penitentiary program, shared several characteristics. First, they had a tireless champion for the program. Second, they had administrative support, at the highest level. Third, they had included security staff in planning and operations. Finally, they had support from their community hospice organization.

Developing quality end-of-life programs in prisons across the country will require more than providing a cookbook of resources. Certain characteristics of the system and environment will shape what is possible. Key variables include the number of terminally ill inmates in a facility, the level of medical services available on site, the use of contract medical services vendors, and the geographic location of the facility.

Providing quality end-of-life care in correctional settings also includes several dilemmas, endemic to corrections settings:

• Involvement of family. In the rare cases when family is located in the same community as the prison, family involvement in decision making, especially in the event that the inmate is unable to express his own wishes, is limited. Simply put, seriously ill inmates are still prisoners first and patients with concerned families second. The dilemma that arises regularly is that patients are far removed from family. Inmates are housed according to custody levels and other factors. This issue is particularly acute for women, who compose a small, burgeoning segment of the prison population. For example, the Federal Medical Center-Carswell in Fort Worth, Texas, which has a well-developed and well-respected hospice program, serves terminally ill women from throughout the country.
• Care at "home": For those inmates for whom prison has become "home" through long periods of incarceration, especially those with close knit inmate families, leaving general population for special care isolates them. While a few states, like South Carolina, offer palliative care in all their prisons, most provide comprehensive medical care in selected sites. Even if the inmate is relocated to a special housing unit or infirmary at the prison, he/she may be leaving "home." The challenge is to develop palliative care at all prisons. An ideal perhaps, but the Oregon Department of Corrections, a GRACE Project demonstration site, is working to implement this approach.
• Advance Directives: The requirement for advance directives, including Do Not Resuscitate orders, is common among prison hospice programs; it allows the patient to remain in the prison to complete his plan of care rather than being removed, in shackles, to a hospital. While this option may prevent unnecessary indignity and suffering, the inherent power disparity between the inmate and the care team and administration also has the potential for imposed, rather than freely chosen care options.⁹

The Louisiana State Penitentiary Hospice Program demonstrates that quality end-of-life care can occur "inside the walls" in what appears to be "an impossible environment for hospice care."¹⁰ While celebrating this inspiring and innovative program, let us also question the laws and their implementation that make it necessary. Indeed, does public safety necessitate the continued incarceration of men and women, who are unable to walk, and perhaps even breath, unassisted?

References:

1. Camp CG, Camp G M. Corrections Yearbook. South Salem, NY: Criminal Justice Institute, Inc. 1998:30-35.
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2. Ibid: 24.
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3. Ibid: 30-35.
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4. May JP. Improving the Quality of End-of-Life Health Care within a Managed Care Model. Presentation at First National Conference on Death and Dying in Prisons and Jails, November 16, 1998. New York, New York.
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5. Unpublished Notes from GRACE Project Charette, Washington, D.C., March 1999.
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6. Special Issues in Corrections: Hospice in Palliative Care in Prisons. Longmont, CO: U.S. Department of Justice, National Insititue of Corrections Information Center. September 1998.
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7. Ratcliff M, Cohen F. Hospice with GRACE: Reforming care for terminally ill inmates. Corrections Today. February 2000;64-67.
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8. See Featured Innovation of this issue: Hospice in Prison: Louisiana State Penitentiary Hospice Program by Tanya Tillman
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9. Dubler NN, Heymann B. End-of-Life Care in Prisons and Jails. In: Clinical Practice in Correctional Medicine. M. Puisis, ed. St. Louis: Mosby, 1998. pp355-364.
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10. Craig EL, Craig RE. Prison hospice: An unlikely success. American Journal of Hospice & Palliative Care. 1999;16:725-729.
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