‘Transforming’ Hospice Access for Terminally Ill Prison Populations

The Nebraska Department of Correctional Services (NDCS) has launched a volunteer-based hospice service for terminally ill incarcerated individuals. The program is part of a wider trend to improve end-of-life experiences as swelling aging inmate populations increase demand.

Volunteers in NDCS’ hospice program provide bedside companionship, emotional support and assistance with daily activities of life. Participants who meet the hospice program’s patient eligibility criteria are selected from the general population at NDCS’ Reception and Treatment Center.

Volunteers in the new program work in collaboration with NDCS team members and health care providers to address the physical, emotional and spiritual needs of incarcerated individuals with a terminal diagnosis.

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The hospice program is designed to increase opportunities for self-development among incarcerated individuals and improve access to care, according to Lori Palik, director of nursing at the Reception and Treatment Center.

“This program truly brings humanity behind the walls of this prison,” Palik told Hospice News in an email. “This program not only addressed the immediate need for compassionate care for terminally ill patients, but also gave incarcerated individuals a chance to grow and gain a sense of purpose by offering them a meaningful role in helping others during a critical time.”

NDCS developed the hospice program after receiving “a heartfelt phone call” from a patient’s family member, Palik explained. Building the infrastructure for an interdisciplinary care model came with multifaceted considerations.

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Community partnerships were an important aspect of designing volunteer training for the hospice program as well as developing technical support. NDCS collaborated with several organizations including the Nebraska Health Care Association, which helped foster connections to local skilled nursing facilities.

A primary consideration was ensuring a robust training model that would equip the volunteers with the interdisciplinary skills needed to provide quality hospice care, Palik stated. Volunteers go through a 10-week training period that spans topics such as pain and symptom management, and emotional and psychological support. Trainees also learn the importance of self-care. The program saw its first cohort of 16 volunteers who recently completed the training.

The hospice program is overseen by a multidisciplinary team of unit staff, security, medical personnel, social workers, religious services and volunteers. The team is responsible for monitoring the care provided, offering guidance and ensuring the program’s safety and effectiveness.

The new program is part of NDCS’ TRANSFORM Nebraska initiative, which is designed to meet the complex needs of individuals in the correctional system and foster personal growth and behavior change.

“This will help add another layer of dignity to the dying process,” Palik said. “Our goal is to promote reentry for terminally ill hospice patients when it is safe and appropriate. The need for these types of programs is especially pressing given the aging prison population. By offering incarcerated individuals the opportunity to serve as hospice companions, the program … provides them with a meaningful, redemptive role, fostering a sense of purpose and responsibility while also contributing to the well-being of others. The hospice program serves as both a transformative experience for the volunteers and a vital service for terminally ill patients.”

Seriously ill seniors are driving demand for hospice in prison settings. Nearly one-third of the nation’s prison population will be 55 and older by 2030, according to research from the Prison Fellowship.

Individuals in prison environments often lack access to end-of-life support, an issue resulting with inmates dying alone in isolated conditions.

Researchers have uncovered common threads fueling these disparities including economic pressures, workforce shortages and a lack of hospice awareness.

Many states have policies that allow patients with serious life-limiting illnesses to apply for an early medical release from prison in order to die in the community. However, studies show these policies are rarely used or relatively unknown among incarcerated populations, creating barriers to their utilization.

Many medically complex incarcerated patients do not understand the full scope of their end-of-life care options, recent research found. Roughly 89% of incarcerated individuals had more than one chronic illness in a 2019 survey of male patients across two state prisons and one large urban correctional facility, according to research published in the Journal of Pain and Symptom Management.

Respondents included seniors roughly 64 and older, with less than a quarter (22%) who demonstrated no relevant knowledge about early medical release options, the research found.

Efforts are ramping up to improve end-of-life outcomes among prison populations, including other volunteer-based hospice and palliative care programs.

Case in point, the California Department of Corrections & Rehabilitation’s Medical Facility (CMF) in July unveiled a new palliative spiritual care training model. The two-week spiritual training program is designed to assist CMF’s clinical and nursing staff caring for patients at the facility’s hospice, correctional treatment center and memory care units. 

A main goal of the training is to ensure terminally ill patients are aware that spiritual care resources are available to them.

“Incarceration is a life-changing experience, and spirituality helps individuals make sense of the things happening around them,” California Correctional Health Care Services CEO Joseph Garland previously told Hospice News. “It becomes even more important for patients facing an existential crisis, especially at the end of their lives.”

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