Abstract
Background:
models of care based on the hospice model have delivered effective support to dying people since their inception. Over the last 20 years this form of care has also been introduced into the prison system (mainly in the United States) to afford terminally ill inmates the right to die with dignity.
Aim:
the aim of this review is to examine the evidence from the United States and the United Kingdom on the promotion of palliative care in the prison sector, summarizing examples of good practice and identifying barriers for the provision of end-of-life care within the prison environment both in the USA and UK.
Design:
an integrative review design was adopted using the Green et al. model incorporating theoretical and scientific lines of enquiry.
Data sources:
literature was sourced from six electronic databases between the years 2000 and 2011; the search rendered both qualitative and quantitative papers, discussion papers, ‘grey literature’ and other review articles.
Results:
the results highlight a number of issues surrounding the implementation of palliative care services within the prison setting and emphasize the disparity between the USA model of care (which emphasizes the in-prison hospice) and the UK model of care (which emphasizes palliative care in-reach) for dying prisoners.
Conclusion:
the provision of palliative care for the increasing prison population remains under-researched globally, with a notable lack of evidence from the United Kingdom.
Even in the free world, hospice is often ill understood. Without careful explanation, provided in an atmosphere of trust, a referral to hospice can be seen by the patient as evidence that the physician has given up and withdrawn care. A prison inmate often feels more vulnerable than a patient in the free world: the professionals who care for him are part of the institution that imprisons him.
1
Introduction
The contemporary model for hospice care is associated with St. Christopher’s Hospice in London, which was opened in 1967, the vision behind it being to deliver care and support to dying people ‘when they need it, wherever they need it and whoever they are’.
2
This philosophy is echoed in the recent UK End of Life Care Strategy, which states
3
People who are detained in prison, or under the Mental Health Act in secure hospitals, should be treated with dignity and respect and given as much choice as possible about the care they receive as they approach the end of their lives (p.103).
The aim of effective end-of-life care is to provide physical, psychological, social and spiritual care to those with life-limiting conditions. This review aims to examine just how far the theory extends in practice in relation to those dying in prison settings, with particular emphasis on comparisons between the UK and USA. These two countries were chosen as comparison sites primarily due to pragmatic reasons, such as the relative wealth of literature regarding the USA prison system, the relatively few prison hospice systems operating in Europe, the similar healthcare and human rights ethics between the two countries and the increase in lengthy prison sentences occurring in both settings leading to a greater emphasis on palliative care services. Recently the issue of prisoners with advanced cancer dying in prison was brought to the fore with the release of Abdelbaset al-Megrahi (the Libyan citizen commonly referred to as the ‘Lockerbie bomber’, imprisoned on 31 January 2001 for life on 270 counts of murder, and freed on compassionate grounds on 20 August 2009 after doctors discovered advanced prostate cancer suggesting a prognosis of approximately three months). The decision was controversial and demonstrated the gap in opinion existing between those who supported the decision and those who did not. 4
In 2009 there were an estimated 90,000 people imprisoned in the UK; 5 of these, approximately 7000 were aged over 50 years. 6 In the USA there are an estimated 2.29 million people imprisoned; 5 this higher figure is believed to have grown exponentially due to the ‘War on Drugs’ campaign, which saw an even higher proportion of the population jailed due to the implementation of the 100 to 1 sentencing law surrounding the possession and supply of crack cocaine, 7 whereby possession of 1 g of crack cocaine was treated under the same sentencing laws as 100 g of powder cocaine. This has since been reduced in 2010 to the ‘18 to 1’ federal law. If the length of prison sentences continues to increase in both countries it is clear that many inmates will end their life within a prison setting. The intention behind prison hospices was to afford terminally ill inmates the right to approach death with dignity, unshackled and supported in the most appropriate way possible. Prison hospices were introduced in the USA in the 1980s, the first being Springfield, Missouri, which opened in 1987, followed closely by Vacaville, California. Since the introduction of the Springfield hospice there has been an estimated 69 prison hospice programmes established across the USA, 8 as well as guidance to aid the implementation of end-of-life services in this environment. In comparison, according to the literature sourced, the UK has only one prison hospice, which began operating in 2004 in Norwich Prison and contains a 15 bed end-of-life unit.
Eligibility for hospice care in prisons reflects that in the free world, usually requiring a life expectancy of no more than six months, although on occasion this can be as little as three months. Many hospices across the USA illustrate similar organizational structures and practices as hospice services elsewhere (Table 1). Wright and Bronstein 9 found that, ‘Among the 14 programs surveyed, at least one social worker, nurse, chaplain, dietician, and physician (sometimes a psychiatrist) compose the core disciplinary team’ (p. 399). Louisiana State Penitentiary (commonly known as Angola), which was one of three recipients gaining the Circle of Life Award 1 for a prison hospice, often involves the inmate and his ‘family’, consisting of direct relations, friends or other inmates, in the caring process. 10 In other institutions the prisoner does not attend meetings in which professionals discuss his/her case, however they are always consulted, as they would be normally. Interprofessional partnerships and a shared understanding of what it means to provide effective models of hospice care are vital; however, as will be discussed later, there are also specific challenges posed by the prison environment, including barriers for staff who can struggle to adapt their role from prison guard to a more carer-focused role.
Principle components.
Although there has been a rise in the amount of prison hospice facilities in the USA, Hoffmann and Dickinson 8 found that the average capacity for a prison hospice appears to be between two and three beds, a relatively small number if one considers that prisons such as Angola house over 5000 inmates. It was noted in much of the available literature that prison hospices are cost efficient, 11 with the programmes funded from the existing monies supplied for USA healthcare. However, to provide extra comfort, the hospices do rely on some donations, and inmates may also help with decorating, painting and artwork to provoke positive feelings and a brighter atmosphere.
The limited available literature on prison hospices may suggest an attitude of less value being placed on end-of-life care for incarcerated individuals. The prison hospice movement is currently more proactive, better defined and perhaps more openly supported in the USA than in the UK. As previously noted in Hoffmann and Dickinson’s study
8
surveying prison hospices in the United States, 69 prison hospice programmes operate at present across the country, many of which are guided by the GRACE Project (Guiding Responsive Action in Corrections at End of Life), set up as a working group to aid the implementation of hospices in North America. With the help of the GRACE Project prison hospices have grown exponentially over the last decade, with Ratcliff and Craig
12
noting that only 20 prison hospice sites were in existence in 1998. Speaking of GRACE, Ratcliff and Craig state The project succeeded in meeting its three objectives. The resource centre provided consultation and materials to more than 130 correctional facilities over the 2-year period and disseminated its newsletter to an additional 500 individuals. (p.378).
It continues to guide prison hospices on how to get the best out of the facility in the safest way.
The USA has also implemented hospice facilities within prisons where inmates are serving shorter sentences or are awaiting transfer. Broward County was the first to begin this in 1995, 13 with two cells used specifically for hospice care. Whilst their philosophy follows that of other prison hospice programmes, their approach is somewhat more lenient with the belief that if someone is serving ‘time’ for a minor misdemeanour, early release to a community hospice is recommended so that the person does not have to die in prison.
Aim
The aim of this integrative review is to examine the nature of evidence for widening access to prison groups for hospice-focused services and to summarize examples of good practice, together with barriers to prison hospice facilities. The work will provide the reader with an overview of end-of-life care within the prison environment in the USA and the UK and clarify whether there is a case for further research in this area.
Design
The integrative review used a narrative overview design 14 to synthesize the literature related to end-of-life care within the prison environment. The integrative review appeared most appropriate as it combines not just qualitative and quantitative work, but also theoretical and discussion papers, 15 which were important when exploring the philosophy and implementation of prison hospices. The following online databases were searched: CINAHL, Web of Knowledge, Social Care Online, King’s Fund Library, Pubmed and the Cochrane Library. Key terms used included palliative care, hospice, end-of-life, compassionate release, prison, penitentiary, imprisonment, jail and custody.
Due to the relatively small amount of literature in this subject area it was not necessary to combine search terms. Efforts were made to obtain all relevant studies. The preliminary search parameters were English-only published research papers, commentaries and discussions, reviews and policy documents from 2000–2011 concerning end-of-life care for the prison population. This search strategy (Figure 1) rendered qualitative and quantitative peer-reviewed journal papers, discussion papers and reviews.
Screening process.
The initial search strategy generated 350 titles and abstracts using preliminary inclusion criteria. Twenty-one papers met the full inclusion criteria which were: (a) end-of-life/palliative care or hospices were discussed in relation to the prison/jail population; (b) included analysis, assessment, case studies or professional opinions of end-of-life care in prisons/jails; (c) were inmate/prison focused. Two members of the research team separately assessed the original sourced material against the inclusion criteria. Any works that were not agreed upon were discussed and passed over to the third member of the research team for a conclusive decision. The vast majority of papers were drawn from data stemming from the USA. Empirical papers were compiled together and analysed, followed by a building of conceptual frameworks stemming from the theoretical texts. The ideas that emerged from the papers were discussed at length by the research team and designated into common themes or ‘intellectual bins’ 16 and key points highlighted and agreed upon. The 21 texts (Table 2) that met the inclusion criteria were then used to draw a conceptual map (Figure 2) detailing the issues emerging from hospice care in the prison setting and analysed using narrative analysis. Using the guidance by Whittemore and Knafl, 15 quality appraisal of the literature was not deemed appropriate or necessary; therefore, all studies that met the inclusion criteria, regardless of methodological quality, were included. To ensure clarity and transparency, the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) model was used for guidance in framing the integrative review. What follows are the results of this analysis and thematic material.
Characteristics of included papers.
Conceptual map.
Results
The role of volunteers
In the bulk of the literature from the USA, volunteers have been important throughout the hospice movement and across every prison hospice organization volunteers appear as a central component.1,9–11,17 In many of the prisons the volunteers are drawn from inmate populations rather than lay people. This, it is suggested, is because they ‘are able to offer patients a level of empathy that cannot be achieved by free people regardless of intention or training’ (Evans et al., 1 p.556). The volunteers themselves are also seen to gain valuable ‘psychological rehabilitation’ 18 through giving their time to terminally ill inmates, creating a renewed sense of responsibility and care.
To ensure that volunteers are eligible, a screening process is used. Due to the nature of the environment security is of paramount importance therefore inmates who already have responsible roles within the prison, for example as orderlies and trustees (inmates who have earned special privileges through good behaviour), are the first choice, alongside offenders who are seen to be rehabilitated/reformed.
19
As Linder and Meyers
17
note Prison hospices employ stringent guidelines in the selection of inmate volunteers, including having records free of disciplinary action for one or more years, committal offenses unrelated to substance abuse, and lower security classifications. (p.20).
The volunteers are required to be committed to the hospice for a period of at least one year; they are also given training over time by hospice professionals lasting approximately 40 hours. 11 In terms of volunteer involvement their work is varied, involving assisting the patient with daily activities, interpreting/translating, clerical work, general errands, companionship and mediation. These tasks reflect voluntary hospice participation in the free world. Guidance is also offered by social workers/pastors/nurses to aid and support the volunteer. On average approximately 20–30 volunteers are usually working within a prison hospice programme in the USA. 9
Challenges
Throughout the literature certain challenges appeared to be important with the introduction of prison hospice services.
Pain relief
One of the core philosophies behind end-of-life care is to ensure a peaceful and comfortable death. Pain relief forms a central tenet of care for all terminally ill people; however, within the confines of the prison prescribing practices are far from simple. Yampolskaya and Winston, 18 in their study of 10 US prison hospices, identify a ‘conservative’ approach by prison staff physicians when prescribing narcotics, leaving the inmate in physical pain rather than risk narcotics filtering through to the general prison population. Turner et al. 20 also note that the fear is endemic amongst prison staff in the UK concerning the selling of drugs intended for the management of pain; however, within the UK prisoners are normally transported out of the prison to palliative care services if the level of pain requires this. From many of the studies a culture of suspicion emerged concerning the illicit drug trafficking of narcotics intended for pain relief from the healthcare teams involved in their care and the prison staff.
An interesting observation appeared in the work of Tillman,
11
who describes ‘Angola’s’ prison hospice from the perspective of the hospice case manager: Within the prison culture, being able to deal well with pain is considered to be a mark of strength. For this reason prisoners may not admit to feeling pain, and many times the nursing staff have to rely primarily on nonverbal signs to assess physical pain. (p.519).
This gives another dimension to the difficulties of pain relief illustrating the ‘macho’ culture that may affect clinicians’ judgement. The problem is therefore twofold: not only are healthcare workers wary of drugs being used illegally behind bars, but according to Tillman, prescribing practice is made more complex by prisoners’ attitude and expressed norms to pain. However, there is a lack of detailed research exploring this issue at present.
Yet another opinion is heard, however, in the work of Lin and Mathew,
21
who interviewed 102 US prisoners undergoing treatment for cancer. This study appears to contradict the findings of Tillman, noting: Eighty-three IPs [prison inmates] (81%) reported a worst pain score of 7 or above (severe pain) in the past 24 hours, and 50 IPs (49%) reported an average pain score of 7 or above in the past 24 hours. (p.468).
By speaking to the prisoners directly an alternative picture emerged, one in which prisoners were denied effective pain relief. The expected normative/stoical attitudes to pain in prisoners are also challenged as inmates talked openly about the lack of appropriate medication. Interestingly, and in contrast to the views of the prisoners, 66% of US primary care practitioners believed that prisoners were receiving adequate treatment for their pain. 21 It is unclear where the misconception emerges, whether it is the prison ‘culture’ of silencing pain or rather the clinician under-prescribing for fear of the inmate abusing the system. Granse 22 is of the opinion that some prison healthcare staff may believe that prisoners ‘may deserve their suffering’ (p.361) or ‘exploit’ the system. The prescribing of pain medication is a complex subject within the prison environment and a problem that appears difficult to deal with without more detailed research.
Trust
Issues surrounding trust are not, however, only experienced by the prison staff but also by inmates themselves, as Granse
22
notes: Dying inmates tend to be very sceptical about decisions to limit care and permit death, especially when such decisions are not preceded by a full range of efforts to extend and support life. (p.364).
Interestingly, Phillips et al.
23
undertook a study in the US of treatment preferences and found that inmates who were ‘non-lifers’, those from a minority racial group or who reported high death anxiety expressed a greater desire for a feeding tube to prolong life when eating and drinking became difficult, whilst ‘lifers’ and Caucasians expressed a greater desire for palliative care. In summary, prisoners who had a chance of release desired life-prolonging treatments, whilst those with little chance were more likely to choose the alternative. The issues surrounding trust are rarely touched upon in the current body of literature and are somewhat compounded by the use of do-not-resuscitate (DNR) orders. In the lay population a DNR order is considered a choice made during an Advanced Care Directive or in end-of-life situations: it is not a prerequisite of treatment. For the US prison population, however, Hoffmann and Dickinson
8
found that Do-not-resuscitate orders were a requirement for admission in 55% of the hospices, showing that prison hospices have departed from the normative community hospice model. (p.7).
There are practical reasons for this, as discussed by Tillman, 11 such as lack of appropriate resuscitation equipment; however, unless fully explained to the inmate it is understandable that they may view a DNR order with suspicion.
There is a question as to whether these issues are communicated effectively to the prisoner. Enders et al. 24 undertook a study with 113 female inmates in a Californian prison to look into the perceived barriers of decision making and advanced directives: ‘Their responses during the focus group discussions revealed a limited understanding of medical terminology and normal and abnormal biological processes’ (p.434). The female prisoners in this study were unsure what questions to ask and felt there were ‘time limits’ in terms of minutes for interaction with a doctor and a ‘lack of continuity of care’. To remove the barrier of language might serve to instil a greater level of trust amongst inmates. Being informed that one is coming to the end of life is challenging enough without the added complexities of incomprehensible treatment processes. The work of Enders and colleagues resulted in endeavours to make the process of end-of-life care more manageable and fluent for this inmate population. It also highlights the ways in which adaptations can be made for this unique population through the use of more comprehensible information material.
A grey area: the UK perspective
As noted previously the majority of the literature cited here emerged from the USA, where the predominant practice is the establishing of within-prison hospices. In the UK there appears to be only one prison hospice in operation. The most commonly used method for end-of-life care at present appears to be the transfer of prisoners to a hospital or hospice within the community, or the granting of compassionate release that entitles inmates to early release on special grounds, for example terminal illness. Some community palliative care teams also accept referrals to assess prisoners requiring expert support. Turner et al.
20
note that: Prison healthcare teams are starting to make links with providers of specialist palliative care in their locality in order to plan and deliver end-of-life care to prisoners who require it. (p.473).
However, for those who may be deemed in need of hospice care, the difficulties in moving prisoners are clear, especially for those who have been incarcerated long-term being moved back and forth (or permanently) to a hospice. For some the prison and its inhabitants are all that is familiar due to institutionalization. In other cases, Turner et al. 20 discuss the problems of medication for those moved between the hospice and the prison, where delays may occur due to the cross-over between the two areas, coupled with the impracticalities of sending prisoners to hospices, which are often situated many miles away from the prison. 25 Establishing effective links between hospice and prison staff seems to be the first stage in a process of providing in-house palliative care for prisoners with life-limiting conditions. Studies report that the British system is lagging behind the US in the delivery of end-of-life care in the form of on-site facilities.20,22,25
A recent study undertaken by Davis et al. 26 used information from the Thames Cancer Registry between 1986 and 2005 to identify the number of cancer cases and the place of death for the London prison population. The results show that 28% (7) died in hospices, the majority 48% (12) died in hospital and 16% (4) died in a nursing home. This serves to highlight the problem in the UK that the majority of terminally ill prisoners are not given access to hospice services and are dying within an acute hospital environment. The authors conclude that, according to their statistics, inmates are not dying within the confines of the prison walls, yet they are still not being given the appropriate access to end-of-life care within a hospice environment.
One limitation of Davis et al.’s 26 work is the relatively small sample size, the study being conducted only for the London prison population and the information the research team were able to access limited to the Thames Cancer Registry, where some inmates may have been registered under a home, rather than the prison, address. It would be interesting to see how these figures compare across the UK, but as yet no literature has emerged detailing this. The fact that the majority of inmates are dying within hospitals is a cause for concern.
Discussion
The purpose of this paper was to provide an overview of end-of-life care for prisoners across the UK and the US. What emerged was the dominance of evidence from the USA and a distinct lack of evidence for any such services in the UK, as illustrated by fewer published papers.
Although the US have led the way through the provision of within-prison hospice care in the UK, Colleran and O’Sìoráin
27
created guidance programmes and support for both the prison and hospice staff, and illustrated the benefits of their programmes to examine barriers and inconsistencies in the delivery of care. The general picture that emerges from the majority of papers is that the within-prison hospice model is seen in a favourable light, yet Granse,
22
a social worker in a Minnesota prison, paints an altogether starker picture: This locked and isolated medical unit provides no particular amenities or advantages other than basic nursing care and medical attention. Safety and security concerns mandate uncovered barred windows, bare walls and Spartan furnishings. Two heavy grey metal doors guard the entrance. Each medical cell does, however, have a television and radio. (p.366).
In essence it is not only concerns of comfort that have to be considered when it comes to a prison hospice, but also containment and support in a safe environment. Given the range of prison settings across the world the fact that any hospice-based care has been created at all, and that the systems that have been put in place and seem to be functioning with minimal resources, is a more favourable outcome than having people dying shackled to a hospital bed.
So the question remains, why is the UK, the pioneer of the hospice movement, reluctant to incorporate these facilities within prisons? According to a BBC news article only 48 people have been granted compassionate release in England and Wales in the last five years. 28 There is a distinct lack of research into this area yet the little there is illustrates a lack of care, with the Prison Reform Trust 29 (an independent UK charity interested in the humanity of prison systems) highlighting that some inmates within the UK are left to die unaided.
In a case note given by one interviewee to the Prison Reform Trust,
29
an inmate speaks of a prisoner diagnosed with terminal cancer who was neither moved to a hospice or hospital. The inmate states: We sat with him in his cell when we could and helped him to move and the nurse kept popping in to see him – she was upset that he had to stay there. He wasn’t allowed any morphine to kill his pain and died a few days later in agony in his cell and alone. (p.4).
How often this happens is unknown. Palliative care liaison services do exist with a number of prisons in the UK, but these do not seem to have been subjected to robust evaluation.
The US has shown that within-prison hospices can be cost efficient, such as the Angola Prison hospice, which was created with current resources and no extra budget; 1 they can also be emotionally rewarding for both the patient and the inmates supporting them, highlighted through the various discussions concerning volunteers in the programmes, and involving the staff resources already in place. From the small body of literature available from the UK, compassionate release or hospital/hospice transfers seem to be the preferred method at present, yet the reasoning behind this stance, or how the policy is applied or evaluated, is unclear.
This integrative review aimed to deliver a compact evaluation of the prison hospice systems in place both in the USA and the UK, by raising awareness of the barriers and challenges to implementing end-of-life systems within the prison environment alongside the benefits that are born out of them. It also served to highlight the discrepancies between policy and practice and the need for further research into this area. As stated, only two prison systems were concentrated upon, which serves to limit the findings. Further, this being an integrative review, the methodological quality of the 21 included works was not checked; however, in our view, this does not diminish their importance.
Conclusion
Hospice programmes for the prison population are still in their infancy, and like all new services there are problems to consider, in particular with the use of narcotics for pain release and issues of trust both on the part of the inmates and the healthcare professionals. On occasion the attitudes of prison staff may also have formed a barrier to the establishing of an effective interprofessional palliative care environment. However, their further exposure and participation in the hospice programme appeared to reduce the initial skepticism. 30
The provision of end-of-life care is increasingly being made available for the prison population, at least in the USA. Recent publicity about the human rights of prisoners in the UK has focused on the provision of voting powers. However, when other needs are considered, in this case effective palliation and supportive care towards the end of life for prisoners with life-limiting conditions, it is notable that less attention has been paid.
The release of Abdelbaset al-Megrahi confirmed the need to examine the provision of palliative and end-of-life care in all prison settings, as release can become intensely controversial and politically sensitive when high-profile prisoners are involved. 31 At present the Gold Standards Framework (GSF), an initiative set up to improve palliative care endorsed by the UK Department of Health, is currently in the process of developing a workbook for end-of-life care within the prison setting. 32 This appears to be an important attempt to move forwards in this area. The UK Prison Reform Trust 29 stated in 2008 that for the prison population the lack of palliative care ‘is a major concern’ (p.4) and the findings compiled in this integrative review echo this point.
Footnotes
Funding statement
This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
Conflict of interest statement
None declared.