Palliative Care for Disenfranchised Populations
Palliative Care for Disenfranchised Populations: Lessons Learned in Prisons and Jails
Whatever one may think of the burgeoning corrections industry in the United States, almost no one would disagree that the psychosocial and physical plight of incarcerated individuals is daunting. Writing in Large Jail Network Bulletin in 2000, Krane and Miles put it this way:
These individuals are disproportionately poor and members of racial minority groups. They have been medically disenfranchised prior to incarceration and have high rates of infectious disease, substance abuse, high-risk sexual activity, and other health problems. Due to high-risk behaviors, many are at risk for acquiring sexually transmitted diseases, including HIV and hepatitis. Furthermore, they are at increased risk of tuberculosis, asthma, cardiovascular disease, and other chronic diseases. (Krane and Miles, 2000, p. 12)
In 1999, more than 2,800 people died in U.S. prisons from natural causes (Camp and Camp, 2000). In the same year, more than 22,500 prisoners tested positive for HIV; 7,000 confirmed AIDS cases were reported; and 324 prisoners died from AIDS—about 10 percent of inmate deaths (Camp and Camp, 2000). Nearly 78,000 prisoners tested positive for tuberculosis (TB) infection; active TB was detected in 385 prisoners; and 186 cases were under treatment (Camp and Camp, 2000). In 1996, more than 1 million people with chronic hepatitis C virus (HCV) were released from U.S. prisons and jails; in fact, the prevalence of HCV in corrections is about 17 percent higher than in the general population (Nerenberg, Wong, and DeGroot, 2002). The estimated total of prison and jail releasees with AIDS in 1996 is almost 39,000, with 36,000 occurring in jails. Seventeen percent of the estimated 229,000 persons living with AIDS in the United States in 1996 passed through a correctional facility that year (Hammett, Harmon, and Rhodes, 2002, p. 17). Although there has been an ongoing response to the needs of prison inmates for several years, with several notable accomplishments, the broad-based approach to the needs of those in jails is just beginning and faces many challenges.
The death of my brother, who died of AIDS in 1993, introduced me to end-of-life care. As his health deteriorated, my family met with our local hospice organization because we needed help managing his care—specifically, his pain. Unfortunately, they could not enroll him in hospice because of his relentless attempts to prolong his life, if only for days or weeks. However much they wanted to help, they could not do so: In my brother’s case, palliative care was regarded as an alternative to life-prolonging treatment rather than as an important treatment component to be integrated into his overall care. It was not until his death was imminent that he finally stopped treatment and enrolled in hospice. But by then it was too late; he died the day before hospice was scheduled to initiate services. Nonetheless, the hospice staff provided important support to our family; if only we could have taken advantage of them sooner. This process showed me the need for hospice, or palliative, care for terminally ill patients and their families as well as some of the barriers to accessing it.
I came to work in this field through caring for my brother. Although he was never incarcerated, one of his caregivers began working on a project to introduce hospice into prisons after an inmate at a Federal medical center who had observed fellow inmates die without effective pain management asked friends on the outside to begin advocating hospice care in prisons.
Early Concerns About Palliative Care in Prisons and Jails
- Some corrections personnel and outside observers questioned whether compassionate care of the dying can occur in such a hostile environment, especially if inmates were involved in providing care. They argued: “You can’t do that in a prison!”
- Many wondered whether inmates deserve compassionate care.
- Some corrections institutions feared that incorporating palliative care could expose them to legal action if families of inmates claimed that their relatives who died while incarcerated were victims of neglect.
- Few corrections systems would pay for the cost of training staff and inmate volunteers in palliative care.
Prisons and Jails
The differences between prisons and jails must be reflected in the health care models for each type of corrections facility. Prisons have a constant population of inmates serving sentences of at least 2 years; many reside there for 10, 20, or 30 years. An in-house hospice program makes sense in this environment and has been the focus of our efforts. Jails, however, are short-term institutions for people who are awaiting court dates or transfer to another institution or who are serving sentences of anywhere from a few days to 12 months. Here, a more flexible approach is needed, one that entails linkages between jails and other venues.
Hospice in U.S. Prisons
The AIDS epidemic was the catalyst for the development of hospice programs in prisons. In the mid-1980s, mortality in prisons increased, mostly from AIDS. Inmates, corrections staff, administrators, and hospice organizations in the community began working together to develop prison hospice programs. As awareness of the need has spread, so has the inspiration to remedy it. We now know of some 44 programs in the United States. Program components of successful prison hospices include
- adoption of the hospice philosophy of care for the dying,
- use of an interdisciplinary care team,
- linkages with community hospice agencies,
- increased family visitation and support, and
- use of hospice-trained inmate volunteers.
When palliative care was first introduced into corrections settings, a culture clash occurred. Some corrections personnel and outside observers protested, saying “You can’t do that in prisons!” They said that compassionate care could not happen in such a hostile environment, especially if inmates had a crucial role in providing it. Many people feared that families would claim inmates were neglected if they died while incarcerated and that legal action would ensue. Cost was also a factor: Few prison systems would pay for hospice training for staff and volunteers, much less for additional personnel. As a result, pioneering efforts had to be implemented within existing prison health care budgets.
Fortunately, those barriers were overcome. Somehow, people began to see that dying inmates were human beings deserving of a dignified and loving environment. Providing hospice care became “the right thing to do.” In nearly all programs, inmate volunteers provided supportive care, as did health care and security staff. Inmates connected with the program took the news out to the general prison population that the corrections staff was providing good care to dying inmates—an unanticipated benefit. Hospice agencies helped create prison-based hospice programs, in many cases without charging for training and policy development services.
Seriously Ill Inmates: Two Approaches to Palliative Care
Volunteers of America, a national, nonprofit, spiritually based organization, using funds from the Robert Wood Johnson Foundation’s Promoting Excellence in End-of-Life Care initiative in 1998, introduced a project called Guiding Responsive Action for Corrections at End-of-Life (the GRACE Project). The GRACE Project demonstrated the feasibility of quality end-of-life care programs in prisons, through the collaboration of corrections and hospice organizations. The pioneers in this effort were able to advise and encourage others who wished to set up similar programs. Standards of care and a handbook have codified this experience (Volunteers of America, 2000, 2001).
|
Philadelphia |
New Orleans |
Los Angeles |
|
|---|---|---|---|
|
(AD) Census |
7,121 |
5,899 |
19,121 |
|
# Bookings |
40,000 |
66,391 |
162,014 |
|
HIV/AIDS |
208 |
462 |
458 |
|
HIV/AIDS (%) |
2.9% |
7.8% |
2.4% |
|
Deaths |
14 |
4 |
37 |
Source: Faiver, Campau and Associates, 2002. |
|||
More recently, the GRACE Project in Jails, funded through the Ryan White CARE Act Special Projects of National Significance program, has been testing transitional case management programs in two large U.S. jails to reach inmates who are seriously ill with AIDS and other life-limiting illnesses and link them to services in the community. The GRACE Project in Jails implemented this intensive transitional case management approach to care for seriously ill jail inmates in two demonstration sites: New Orleans, Louisiana (Orleans Parish), and Los Angeles, California. GRACE Project case managers assist clients in identifying the individual’s current case management needs, developing a plan for life after their release, and detailing medical and other needs and how they should be met. The case managers also help implement the plan once clients are discharged from jail, and they maintain contact with the clients during their transition to their new location, whether home, prison, a homeless shelter, a treatment program, or the streets.
Released prisoners generally exhibit poor compliance with medical prescriptions, often because of more pressing needs, such as food and shelter and struggles with alcohol and drug abuse. Intensive transitional case management works to meet the wide—sometimes overwhelming—variety of client needs. Upon release, clients may need housing, health care, employment, drug and alcohol rehabilitation, occupational therapy, emotional and religious support, transportation, legal services, food and clothing vouchers, and family support. Services provided to clients while still in jail can include contacting family, advocating for appropriate health care in the jail or city hospital, and securing adequate legal representation.
Some Corrections Systems Provide Palliative Care
A few jail systems provide palliative care for dying inmates. The Philadelphia Prison System, as well as the Broward County Sheriff’s Office in Ft. Lauderdale, Florida, operate hospice programs for seriously ill patients. Both programs more closely resemble the model of prison hospice programs in that they focus on providing comprehensive palliative care to patients while they are incarcerated. They offer a successful delivery model for in-house palliative care, which includes pain and symptom management, use of an interdisciplinary care team, support for compassionate release, expanded family visitation policies, and psychosocial and spiritual care.
Sources: Focus on jails: the Philadelphia Prison System Hospice and Comfort Care Program. GRACE Project Newsletter. 2002; 1-2. Tighe FP. Broward County cares for terminally ill inmates: Hospice in the jail. LJN Exchange. 2002; 5-8.
In the Orleans Parish Prison (which corresponds to a county jail in other jurisdictions), approximately 66,400 bookings take place each year. The average daily census in 2001 was 5,899, and the average length of stay was 27 days. Although the sheriff has gone to great lengths to get terminally ill inmates released from jail custody before they die, four such inmates died in jail in 2001. In Los Angeles, between 19,000 and 20,000 people reside each day in the several facilities that constitute the Los Angeles County Sheriff’s Department jail, and around 162,000 bookings take place each year. The average length of stay is 43 days. Thirty-seven people died in the jail in 2001, and the medical director estimated that five people with terminal illness reside there at any given time (Faiver, Campau and Associates, 2002).
In many cases, people have not sought medical care prior to their incarceration, and they often do not stay in jail long enough to receive more than token care. Seriously ill inmates may pass through the jail to die later in community hospitals or hospices—or on the streets. Because of the short length of stay and general diagnostic limitations, all incarcerated individuals in need of palliative care or intensive transitional care management cannot always be identified. This is the environment in which the GRACE Project has been attempting to identify people who need palliative care services (Faiver, Campau and Associates, 2002).
Services in the community available to this population upon their release from incarceration vary but are generally considered scant. In Los Angeles, Volunteers of America operates a drop-in homeless center, which is a destination for some GRACE Project clients. In New Orleans, a similar level of community support is not available, although the HIV Outpatient Program, known locally as the HOP clinic, provides tremendous support to any HIV/AIDS patient, including those in the jail system.
Lessons Learned
Deaths that occur in correctional settings often raise questions. As one administrator of a successful program explains,
Any death in the jail gets investigated, which at times feels like an inquisition. Actions and decisions get questioned, the medical examiner becomes involved, and the investigation wears on staff at every level. A strong support structure must therefore be in place for a jail hospice program to succeed (Tighe, 2002, p. 8).
Corrections health care providers must receive training in end-of-life care if they are to identify patients needing palliative care and advise them on program options. Communication links must be established within the jail (among health care staff, custody staff, administration, and the inmate population) as well as with outside community and public health agencies, such as health care clinics, hospices, providers of food and shelter. AIDS service organizations often have established linkage programs, and any program working with access to palliative care should build on those relationships.
Transitional Case Managers Link Clients With Needed Services
- Benefits: Supplemental Security Income, Medicare, Veterans Administration, employment
- Housing: hospital, hospice, shelter
- Health care
- Rehabilitation: drug, alcohol, occupational therapy
- Emotional support
- Transportation
- Religious services
- Legal services
- Subsidies: transportation or meal vouchers
- Family support
- Job development.
Communication between the corrections institutions and postrelease caregivers is especially important when a terminally ill inmate is making the transition back into society. For example, the lack of medical information on most inmates leaves health care providers who work with this population asking such questions as: What medication is the patient taking? Has he or she received health care services in community clinics? In addition, inmate releases occur at all hours of the day and night, and often without warning. If discharge planning and placement in the community are to work, intensive transitional case management needs to occur before the individual leaves the institution.
Challenges for the Future
The challenges of prisons differ from those of jails. We have been extremely successful in setting up hospice programs in prisons. That is the good news; but in light of fiscal constraints, how will these programs be sustained? More programs need to be created to serve an inmate population that is growing older and sicker. Where will the resources come from?
The jail population is more difficult to serve because of the transitory nature of jail inmates, the prevalence of drug and alcohol addiction, the shortage of available beds and other services in the community, and the lack of funding with which to hire case managers. Drug and alcohol treatment services need to be increased exponentially within and outside of corrections institutions, because substance abuse—directly or indirectly—is what usually brings people back into jail. Most pressing is the need for cooperation among all those who work with inmates and releasees. As Thomas Conklin (1998) wrote in the American Journal of Public Health, “These are public health problems that demand effective management and close coordination between correctional health, community health, and public health” (p. 1249).
A remaining task is that of reaching terminally ill patients who have entered the hospital as wards of the criminal justice system and have been released from custody but remain in the hospital. They have passed through the jail system and now need palliative care outside of corrections institutions. Often, they have no family, and no one in their lives knows that they are dying in a hospital. Much work needs to be done to identify these people and connect them with the end-of-life care they may require.
Bibliography
Camp CG, Camp GM. Corrections Yearbook. South Salem, NY: Criminal Justice Institute; 2000.
Conklin T. A public health model to connect correctional health care with communities. Am J Public Health. 1998;88:1249-50.
Faiver, Campau and Associates. Review of transitional case management programs and end-of- life care programs at three large urban jails. Report for the GRACE Project; 2002. Unpublished report.
Focus on jails: the Philadelphia Prison System Hospice and Comfort Care Program. GRACE Project Newsletter. 2002; 1-2.
Hammett TM, Harmon P, Rhodes W. The burden of infectious disease among inmates and releasees from correctional facilities. In: The health status of soon-to-be-released inmates: a report to Congress. Vol. 2. Chicago: National Commission on Correctional Health Care; 2002.
Krane KM, Miles JR. Why public health must go to jail. Large Jail Network Bulletin. 2000;12.
Nerenberg R, Wong M, DeGroot A. HCV in corrections: Frontline or backwater? HEPP News. 2002;5(4):1.
Tighe FP. Broward County cares for terminally ill inmates: hospice in the jail. LJN Exchange. 2002;5(8).
Volunteers of America. Standards of practice for end-of-life care in corrections. Alexandria, VA: Volunteers of America; 2000.
Volunteers of America. End-of-life care in corrections: A handbook for caregivers and managers. Alexandria, VA: Volunteers of America; 2001.
