Living with a terminal illness can be a profound situation. Add life behind prison walls into the mix and the situation becomes even more difficult.
Researchers from Penn State University are studying strategies for improving formal end-of-life (EOL) care in prisons, which is offered at some prisons across the country. Susan J. Loeb, PhD, RN, associate professor of nursing, is conducting a study with employees from six Pennsylvania prisons and the Pennsylvania Department of Corrections (DOC) to refine the delivery of EOL care.
Along with fellow principal investigators Janice Penrod, PhD, RN, FGSA, associate professor, school of nursing and department of humanities, and Christopher S. Hollenbeak, PhD, associate professor of surgery and public health science, Loeb is developing an interventional toolkit to improve EOL care that can be used by staff at any prison across the country.
Loeb explained a request for applications was released in 2009 by the National Institute of Nursing Research (NINR) soliciting research proposals focused on "Interventions to Improve Palliative Care at the End of Life." Loeb and Penrod discussed the possibility of developing a grant application to conduct the study.
"This seemed like a great opportunity to bring together Janice's expertise in end-of-life research and qualitative methodologies with my background in conducting research in state correctional institutions and expertise regarding older inmates with chronic health conditions," Loeb stated. "In addition, we approached Christopher to join us and contribute his expertise in economic evaluation."
Who Will Participate
Armed with $1.27 million from the NINR for the 3-year research, the Penn State team is utilizing the "participatory action research" model to go forward. This model will employ prison workers, including healthcare professionals, chaplains, volunteers and corrections officers to provide information on current limitations and strengths they see, existing perceptions of EOL care among prison stakeholders, and areas of EOL care that can be improved. The research team has already visited the six PA prisons for 3 days each, and expects to visit again numerous times before the study is done.
"Focusing our work on the delivery of end-of-life care in prisons is appropriate because, on average, incarcerated people face health issues associated with non-incarcerated people who are 10 to 15 years older," explained Loeb. "Using the data, we will create a set of educational strategies that will be used internally by prison staff, which can be tailored to fit an individual prison's needs," explained Loeb.
The group expects to make recommendations on improvements to EOL care in prisons and to study the effects of their suggested changes.
The researchers selected Pennsylvania prisons representing the diversity of prisons in the country. They include varying levels of racial/ethnic concentrations and security (from minimum to maximum), and ones that house both male and female inmates. Additionally, the study includes a prison with an oncology unit, another with a primarily geriatric population, two prisons that house inmates facing death penalties, and a prison with a mental health unit
The older population of inmates is growing rapidly. The study focuses on numerous medical concerns facing this prison population.
"Chronic illness, health promotion/disease prevention education and education about normal aging changes are all areas of focus," said Loeb. "We are also taking a look at accommodations for functional limitations. For example a bottom bunk and housing closer to essential services such as infirmary, chow hall and commissary; all these issues are being addressed."
She added they are also seeing more chronic illnesses as outcomes of insufficient healthcare, substance abuse and environmental stressors prior to incarceration. "Studying the delivery of EOL care in prisons will provide great insights into not only the delivery of healthcare in a large, complex organization, but to end-of-life care in general."
Loeb pointed out healthcare in prisons operates on a fixed budget. Care is paid for through internal funds instead of insurance plans - a major contrast to the reimbursement system used by most healthcare consumers outside of prison in the U.S. Prison medical costs are increasing at a rate of around 21 percent each year, which puts tremendous strain on prison healthcare budgets.
"With fixed budgets, prisons have to make hard choices about what sort of care to provide, and, perhaps more importantly, not to provide," Loeb added. "One goal of the study is to examine the feasibility of different EOL care measures on that fixed budget."
"Findings regarding prioritized needs for inmates facing end-of-life are pending because we are still analyzing data from our initial interviews" added Loeb. Follow-up sessions with key informants will occur in the near future,"
Loeb and her team believe the study's benefits are three-fold. First, is to improve EOL care for inmates in PA. Second, engaging stakeholders at the prisons will ensure sustainable changes in practice get diffused throughout the DOC to improve EOL care for inmates in PA. And third, findings from this study will lay essential groundwork needed for future research aimed at infusing generalist end-of-life strategies into other complex organizations like veterans' facilities and nursing homes.
"Using the participatory action model in correctional settings is an important innovation that holds promise to promote humane EOL care for inmates with advanced chronic health conditions; greater satisfaction for prison staff caring for inmates at the end of life; and more cost-effective care for the institution, the broader system and ultimately society," concluded Loeb.
Leslie Feldman is a frequent contributor to ADVANCE.