The first prison based hospice was established in the United States in the late 1980’s. Since then 75 hospice programs are in place in prisons and jails across the country. Most of these programs were established within the agency’s existing budget. One of the distinguishing features of the programs in correctional facilities is the use of inmates as hospice workers. Inmate hospice workers may assist patients with activities of daily living (ADLs), provide companionship, assist with relaxation techniques, run errands, provide translation or interpretation for deaf and non-English speakers and perform clerical work (MaAdoo, 2012). Hospice practices that have been adapted for use in prisons and jails include:
- Increased family involvement made possible by modified visiting rules
- In addition to nurses and other health care professionals the interdisciplinary treatment team includes the chaplain, a social worker, one or more members of the correctional staff, the inmate, and family as well as the hospice workers.
- An individualized plan of care that includes structured, documented discussion about treatment options in the form of advanced care planning.
- Skilled clinical management of pain and other symptoms as evidenced by access to analgesia used to manage pain, protocols for proper administration, and training of clinical staff in palliative care.
- Bereavement services for patients, family, other inmates, hospice workers, and staff to cope with death and associated grief.
- Modification of the physical environment to increase comfort and provision of special food (Craig & Ratcliff, 2002).
Nurses have often been the change agent responsible for bringing hospice care into correctional facilities and they continue to be instrumental in the adaptation of hospice practices to this population and setting. One of these nurses is Tonia Faust CCNM, RN the hospice program coordinator at Louisiana State Prison who is featured in The American Nurse by Carolyn Jones (2012). Her interview was featured in a segment about the book done recently on the Newshour on the Public Broadcasting Service.
Is hospice care available at your correctional facility? What are some of the challenges you have experienced in providing end-of-life care in the correctional setting? The following are some challenges in developing hospice programs in correctional facilities that have been described.
There is conflict between priorities of caring for the patient and ensuring security. This includes challenges related to trust for both inmates and staff. Staff voice concern that an inmate in pain will over-report distress to obtain narcotics or other medication that is then misused. Inmates see health care providers, including nurses as serving the goals of the criminal justice system instead of meeting the patient’s needs. Inmates may not have sufficient health literacy to fully engage as members of the treatment team and be wary of asking for assistance. Special consideration must be given to the role of correctional officers so that they can support of end-of-life care and maintain safety and security. Unaddressed these conflicting priorities can result in delaying access to appropriate, clinically responsive end-of-life care.
The environment is a deterrent to quality at the end of life. Housing hospice patients in a specific location such as part of the infirmary or a housing unit can create stigma, increase isolation, reduce access to programming and other privileges, prevent the patient from receiving support from friends living in general population. Another challenge with regard to the setting is that the location, even the infirmary, may not have proper equipment or supplies to deliver hospice care.
Comfort measures may be prohibited or too restrictive. Most correctional systems prohibit staff from touching prisoners except as necessary to perform a duty. The use of touch by staff to provide comfort in health care is usually not allowed or very restricted. In addition staffing ratios in most correctional health care programs are not rich enough for nurses to spend time comforting dying patients. The use of inmates to provide hospice care has enhanced the ability to provide comfort but this may be limited by operational needs such as lockdowns, restricted line movements, and other security measures which can reduce access to hospice workers when comfort care is most necessary.
Expression of grief is restricted. Inmates and staff are concerned that expression of grief within the correctional setting makes them vulnerable to being taken advantage of by predatory inmates. Cultural practices within the correctional setting may not acknowledge vulnerability especially as it relates to emotions like loss and grief. Many inmates have experienced the loss of a family member and because of their incarceration were not able to make a deathbed visit or participate in the funeral or other memorial service. The inability or failure to grieve loss contributes to depression, anxiety and the inability to cope with subsequent losses.
Clinical care is inconsistent with standards for hospice and palliative care. The normal operation of the health care program may limit the time providers can spend with patients and the patient may experience frequent changes in the care provider they are assigned. Further some facilities limit the number of problems an inmate can bring to a health care appointment. End-of-life care requires a different kind of patient provider interaction to discuss choices about life prolonging interventions, to make decisions about limiting care and to develop a plan of care that anticipates and addresses symptoms quickly and responsively. Another challenge is to ensure access to the full complement of analgesics including controlled substances and other medications used to manage pain and other distressing symptoms. Finally health care staff must be knowledgeable and skilled in the practices of palliative and end-of-life care along with all of the other areas of expertise that a correctional health care provider must have to care for this population.
What successes have you had as a correctional nurse addressing these challenges to delivery of end-of-life care? Please share your experience by responding to this post in the comments section. To order a copy of The American Nurse go to www.welcomebooks.com/americannurse. Proceeds from the sale of the book will support a scholarship fund for nurse education. For more on nursing and end-of-life care in the correctional setting see Chapter 8 in the Essentials of Correctional Nursing. The text can be ordered directly from the publisher and if you use Promo Code AF1209 the price is discounted by $15 off and shipping is free.
Craig, E. & Ratcliff, M. (2002). Controversies in correctional end-of-life care. Journal of Correctional Health Care, 9, 149-157.
Howe, J.B., Scott, G. (2012) Educating prison staff in the principles of end-of-life care. International Journal of Palliative Nursing. 18(8): 391-395
Jones, C. (2012). The American Nurse: Photographs and Interviews by Carolyn Jones. Welcome Books
Knox, C. (2012). End-of- life care. In Schoenly, L. & Knox, C. Essentials of Correctional Nursing. Springer. NY.
Loeb, S.J., Penrod, J. Hollenbeak, C.S., Smaith, C.A. (2011) End of life care and barriers for female inmate. Journal of Obstetric, Gynecological and Neonatal Nurses. 40: 477-485
McAdoo, C., Price, C. (2012) Models of Care: End-of-Life Care in Prisons. Presented at Updates in Correctional Health Care. National Commission on Correctional Health Care. May 2012. San Antonio TX. Accessed 8/12/13 at http://ncchc.sclivelearningcenter.com/index.aspx?PID=4622&SID=128752
Stone, K., Papadopoulos, I., Kelly, D. (2011) Establishing hospice care for prison populations: An integrative review assessing the UK and USA perspective. Palliative Medicine. 26(8):969-978
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