Palliative Care NSW Volunteer Support Services Programme

Within Prisons

In the 10 year period from 2000 the population of prisoners in NSW over the age of 65 increased about two and a half times (by 151.6%) (Browning et al, 2011:2).

This trend creates an ongoing resource challenge for prison administrators in supporting the health and palliative care needs of inmates. One of the options for supporting the delivery of palliative care in the prison setting is the engagement of fellow inmates as palliative care volunteers.

Much can be learnt from the US correctional system which has 17 years or so experience of engaging volunteers in prison hospices in some prison facilities. We should bear in mind though that the US community has a more regulated hospice system which includes a funding requirement that the hospice engage volunteers (NHPCO, 2015:1). This has perhaps facilitated and normalised the uptake of hospice services and hospice volunteering within their correctional system.

Currently health and palliative care services in correctional facilities in NSW are managed through collaboration between Corrective Services NSW and the NSW Department of Health (Justice Health). A centrepiece of these services is the Long Bay Hospital, an 85 bed facility located within the Long Bay Complex site operated by Corrective Services NSW with all health services provided by Justice Health. The hospital includes the 15-bed Aged Care and Rehabilitation Unit (Justice Health, 2009:18).

Research on the experience of aging offenders in NSW is scarce although some work is being undertaken by the NSW Centre for Health Research in Criminal Justice (CHRCJ) in collaboration with the Monash University Criminal Justice Research Consortium (CJRC). Existing commentary on prisons in Australia notes a dearth of suitable facilities and resources for older offenders, which has the effect of creating a form of ‘double punishment’ for people experiencing the effects of aging (Browning et al, 2011:4).

The availability of palliative care volunteers to people in NSW (Hansen & Huntir, 2014:2) suggests that access by the prison population to palliative care volunteers is an issue of equity of access if ‘double punishment’ is to be avoided for prisoners in end of life care.

The 2014 report Dying in America (IOM, 2014:2-14) notes the correlation between volunteering, quality and equity in relation to the US prison hospice approach:

…Hospice programs with the greatest use of volunteers had the highest overall ratings for quality of care. Using volunteers also can increase access to hospice care in some circumstances. For example, prison volunteers have helped make hospice a viable service for fellow inmates who are dying, including elderly prisoners serving long sentences and prisoners with AIDS (Mitchell, 2013; Casavecchia, 2011). 

One of the successful hospice programs in the USA is at the country’s largest prison, the Louisiana State Penitentiary (also known as Angola). Angola has about 5,000 inmates of which 85% are expected to end their life in prison while serving their sentence (Open Society Institute, 1998). The hospice service includes nursing, medical, pastoral care and bereavement services, social work services, volunteer services and security services. Initially the volunteers were selected based on the recommendations of ‘inmate leaders’ within the prison population. Training and resourcing is provided by staff within the facility.

The prison hospice has been successfully operating since 1997 and has been the subject of much media scrutiny.

Understandably the likely media and public attention is one reason why prison authorities might be circumspect about introducing a hospice-style palliative care volunteer program in NSW. Another might be economies of scale, with the largest prisons in Australia having populations of only about 2,000 inmates. For example in 2009 NSW Justice Health reportedly cared for 10,450 full-time adult inmates (Justice Health, 2009:5) but the percentage of these who would be likely to be expected to end their life in prison is unknown.

One aspect of the prison hospice volunteer experience in the USA has been the self-reported enriching of the life of the volunteer through their contribution to the care of a fellow inmate. In one video interview inmate Leslie Williams said:

I did a lot of wrong and I hurt a lot of people out there, and when I heard about hospice it was in my heart to join because I said ‘this will be my way of giving back to society’, I can’t tell those people that I’m sorry for what I did, you know the ones who are living, they wouldn’t want to hear it, so instead of talking about it I’d rather do something about it…the hospice program enabled me to let go of a lot of anger, animosity, hate, you know…the hospice program got me to tear (my barriers) down (OSI, 1998)

Given the US experience, and the NSW Government’s support through the Volunteer Support Services program for advancing the role of palliative care volunteers, the time seems right for us to develop a framework for prison-based palliative care volunteering in NSW suitable to the Australian context.

References

Australian Institute of Criminology http://www.aic.gov.au/criminal_justice_system/corrections/facilities/nsw.html#longbay (accessed 13 January 2015)

Browning, C., Baidawi, S., Collier, P., O’Connor, D., Sheehan, R., Trotter, C. & Turner, S. (2011) Older Prisoners: A challenge for Australian corrections, Australian Institute of Criminology: Canberra

Casavecchia, K. 2011. Inside view. http://npha.org/2011/11/29/inside-view/ (accessed March 11, 2014).

Hansen, L. & Huntir, A. (2014) A Snapshot of Palliative Care Volunteering in NSW 2014, Palliative Care NSW: Surry Hills

Institute of Medicine (IOM) of the National Academies (2014) Dying in America, USA) (http://www.nap.edu/download.php?record_id=18748) (accessed January 13, 2015)

Justice Health (2009) Health Services Brochure, Justice Health: Malabar

Mitchell, K. 2013. Colorado prison hospice program helps inmates die with dignity. Denver Post. February 17. http://www.denverpost.com/ci_22607208/colorado-prison-hospice-program-helps-inmates-die-dignity (accessed March 10, 2014). 

National Hospice and Palliative Care Organisation (NHPCO) (2015) Survey readiness initiative: Medicare hospice conditions of participation subpart C s418.78, http://www.nhpco.org/sites/default/files/public/regulatory/418.78_Volunteers.pdf (accessed 13 January 2015)

Open Society Institute (OSI) (1998) Angola Prison Hospice: Opening the Door https://www.youtube.com/watch?v=mMLjANwBRDk (accessed 13 January 2015)