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The ARREST study aims to map palliative care for inmates and identify potential gaps and opportunities. To this end, the project team is surveying both patients and caregivers from various professional groups.
A serious, incurable illness can strike anyone at any stage of life—including while serving a prison sentence or under preventive detention. In Germany, dying inmates are generally released early if doing so does not jeopardize public safety. However, there are also people who spend the end of their lives in prison. Whether inside or outside a correctional facility (JVA), prisoners have a right to palliative care. But what does this care actually look like? Little is known about this in Germany so far. A research team from the Institute of General Medicine and Palliative Medicine at Hannover Medical School (MHH) now aims to find out using Lower Saxony as a case study. The study is titled “Dying in the Prison System: Exploring the Experiences and Needs of Inmates and the Reality of Care (ARREST).” The project is funded by the German Research Foundation with approximately 356,000 euros for 30 months.
End-of-life care under special conditions
According to the so-called equivalence principle, inmates are entitled to the same medical care as those with statutory health insurance, which means they are also entitled to palliative care services. In the event of illness, they are initially treated by the prison’s internal medical staff. Larger prisons also have their own infirmaries. In cases of serious illness, prisoners can be transferred to prison hospitals. Despite this structure, medical care for seriously ill prisoners is subject to special conditions: “Prisons are inevitably restrictive and highly regimented institutions with little room for maneuver. Inmates are stigmatized; many suffer from loneliness and conflicts with prison staff and fellow inmates. They have no access to the public health system and are often dependent on the actions of third parties—especially at the end of life,” explains Prof. Dr. Stephanie Stiel, director of the ARREST study.
Scarce scientific data
Data on the number of prisoners with serious incurable illnesses is not available. What is certain, however, is that their numbers are rising. Demographic change is also making itself felt in correctional facilities. There, those over 60 are the fastest-growing group. Consequently, the number of seriously ill and dying inmates will also increase significantly in the coming years. There is hardly any scientific research on the topic. “For example, we do not know how high the number of early releases or deaths in custody is. Furthermore, little is known about the specific palliative care provided both inside and outside correctional facilities. There are no established treatment pathways,” explains Professor Stiel. Nor has research been conducted on who is involved in providing care, at what point, and in what capacity—such as in-house and external physicians, nursing staff, and specialists in psychology, social work, and pastoral care. The psychologist aims to clarify these and many other issues in collaboration with sociologist Dr. Malte Klemmt and criminologist Sarah Barkowski.
A Multiperspective Overview
“With the ARREST study, we aim to present the current state of palliative care in the prison system to identify potential gaps and opportunities and highlight any need for action,” says Dr. Klemmt. The study will include both affected inmates and former inmates, as well as in-house and external care providers. In the first phase of the project, the research team will survey seriously ill and dying inmates as well as those released early regarding their experiences, needs, and wishes concerning their care. The second phase will involve interviews with care providers both inside and outside prisons, such as in hospices and palliative care units. The researchers are particularly interested in their experiences with the reality of care delivery. In the third phase, the results of the surveys will be compared and synthesized to create a multi-perspective overview.
Fixed Structures in the Healthcare System
The empirical studies in the ARREST project are limited to Lower Saxony. The extent to which the study’s results can be applied to other federal states or all of Germany will be discussed within the project. Lower Saxony has 13 independent correctional facilities, including a central women’s prison. Many prison administrations have already agreed to support the ARREST team. “If our research not only depicts the reality of care but also helps to stimulate the development of structures and standards for palliative care for inmates, the goal of our project would be achieved,” explains Professor Stiel. This would benefit both inmates and caregivers.
SERVICE
Further information can be found here: https://www.mhh.de/allpallmed/arrest
For further information, please contact Prof. Dr. Stephanie Stiel, stiel.stephanie@mh-hannover.de.
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Copyright: Julia Diedrich/MHH
End-of-life care in prison: The ARREST team aims to investigate how seriously ill inmates are cared ...
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