The need for palliative care in prisons

A blog post written by Isabelle Schaefer, an author from our Latest Australian Research series

When we think of palliative and end of life care, we usually imagine care that is provided to people at home, in a Residential Aged Care Facility, or in hospital. However, palliative care is also needed in institutional settings such as prisons, which is often overlooked.

We don’t know a lot about how people in prison perceive palliative and end of life care in prisons, and their experiences. This study (Schaefer et al., 2021) systematically reviewed existing evidence about the perceptions and experiences of people in prison about palliative and end of life care during incarceration.

Two broad analytical themes emerged from the data: the expectations versus experiences of palliative care, and the profound impact of the prison environment on the access to and provision of palliative care.

Expectations versus experiences

People in prison expected to receive the same basic support at the end of life as people in the community, but many related experiences that did not match their expectations. This was expressed in four main areas:

• Expectation of equitable palliative and supportive care: People in prison expected to receive palliative care of the same standard as in the community, including basic care such as timely primary care consultations, proactive assessment and management of symptoms, a supportive doctor-patient relationship and prompt crisis response. When talking about their experiences, patients often described instances where they felt care had not met their needs, or care was inaccessible to them.

“I was in my cell when I heard . . . “Get a guard! Get a guard! She’s foaming at the mouth!” The guard went running in there, looked in the door and said, ‘I want you to roll over and shut up! I am tired of hearing you beat on this door.’”(Deaton et al., 2009, p60)

• Differentiation between just and unjust punishment: People in prison felt that being kept in prison with an advanced, life-limiting illness caused additional, unfair punishment as restrictions of the prison regime disproportionately affected people with palliative care needs, restricting both their access to care and their capacity to make choices.
• Building a connection within clinicians while in prison: It was difficult for people in prison to build a normal therapeutic alliance with their clinicians because of the difference in status and power. Participants noted that some clinicians were supportive, helpful and responsive to their needs, while others were dismissive of self-reported pain or medical emergencies.

“I just wish you could step into my head for a minute to see what I’m feeling. Then you could understand the helplessness I feel, but you don’t understand. I feel like, don’t just look at my number, look at my face. I have a spirit.” (Enders et al., 2005, p437)

• Capacity to make choices is severely limited: People in prison with palliative care needs had very limited capacity to make choices about their treatment, care setting, end of life care preferences or their healthcare providers.

Prison context complicates access to and provision of palliative care

The second analytical theme focuses on the barriers imposed by the prison system on access to and provision of palliative care.

• Physical environment complicates access to care: The physical and social environment of prisons is mostly oriented to young men, and can provide a significant barrier to care access. Limitations such as lack of medical equipment, medications, insufficient mobility aids and access to hygiene facilities have a disproportionate impact on people in prison with palliative care needs.

‘I can just waltz upstairs and get my meds [medications], but you see guys trying to get up the stairs and ... they just can't do it.’ (Turner et al., 2018, p165)

• Dying in prison adds complexity to mortality: Dying in prison was complicated by feelings of fear, shame, grief and regret. Patients were distressed at the thought that they might die alone, in pain, or without their families.

Conclusion

Providing palliative care in prisons is a difficult task, and more work is needed to understand the need for palliative care in prisons, how palliative care is currently provided, and the best model for care provision.

In Australia, the National Palliative Care in Prisons Project, a Commonwealth-funded National Palliative Care Project at the University of Technology Sydney, led by Professor Jane Phillips is seeking to better understand these questions, and design a National Framework for Palliative Care Provision in Australian Prisons.

Isabelle Schaefer, 
Project Officer and PhD Candidate, National Palliative Care in Prisons Project, 
University of Technology Sydney, on behalf of authorship team
 

References

Deaton, D, Aday, R H & Wahidin, A 2009, 'The effect of health and penal harm on aging female prisoners' views of dying in prison', Omega: Journal of Death & Dying, vol. 60, pp. 51-70.

Enders, S R, Paterniti, D A & Meyers, F J 2005, 'An approach to develop effective health care decision making for women in prison', Journal of Palliative Medicine, vol. 8, pp. 432-439.

Schaefer, I, DiGiacomo, M, Heneka, N, Panozzo, S, Luckett, T & Phillips, J L 2021, 'Palliative care needs and experiences of people in prison: A systematic review and meta-synthesis', Palliative Medicine, vol., pp. 02692163211068278.

Turner, M, Peacock, M, Payne, S, Fletcher, A & Froggatt, K 2018, 'Ageing and dying in the contemporary neoliberal prison system: Exploring the ‘double burden’ for older prisoners', Social Science and Medicine, vol. 212, pp. 161-167.