Abstract
This study aimed to evaluate health professionals’ views about palliative care provision in prisons in the counties of Cumbria and Lancashire in the North West of England. Seventeen prison healthcare staff and nine specialist palliative care staff participated in semi-structured interviews and 16 prison healthcare staff completed a questionnaire designed to measure knowledge, skills and confidence in relation to palliative care. The findings highlighted tensions between the philosophies of care and custody, and the many challenges in providing palliative care in a custodial setting. This paper presents two illustrative case study examples, and suggests ways in which some of these challenges can be overcome in practice.
Background
This paper will explore some of the challenges inherent in providing palliative care to people in custody, drawing on a study that was conducted with staff from prisons and hospices in the North West of England.
Approximately 10 million people are currently held in prisons across the world, 1 and the numbers vary considerably from country to country. The United States (US) has the highest prison population rate in the world, with 756 prisoners per 100,000 of the population. Two thirds of countries have rates above 150 per 100,000; the United Kingdom (UK) rate of 151 per 100,000 is the third highest in Europe after Spain (160) and Luxembourg (155), and is 60% more than Belgium, France, Germany, Ireland and Italy. 1 There are currently 140 prisons in England and Wales housing over 85,000 prisoners 2 and this figure is projected to increase over the next 5 years to as much as 93,900. 3
The contrast between dying in prison and dying in a hospice is stark. In the UK, hospices provide a wide range of services, and exist to make the last phase of life as comfortable and peaceful as possible; the concepts of holistic care and ‘total pain’ are fundamental to the hospice movement. 4 Prisons, on the other hand, exist for entirely different reasons. According to its statement of purpose, Her Majesty’s Prison Service in England and Wales serves the public by holding prisoners securely, reducing the risk of re-offending through rehabilitation and providing safe and well-ordered establishments ‘in which we treat prisoners humanely, decently and lawfully’. 5 It is important to note that the concept of punishment, which is central to prison philosophy in many countries, is conspicuously absent from this statement of purpose; despite popular misconception, the stated primary purpose of prisons in the UK is rehabilitation, not punishment.
A recent report from the Prisons and Probation Ombudsman for England and Wales (the independent body responsible for investigating all deaths in custody) documented a total of 181 deaths in custody in the year 2008–2009, of which 107 (59%) were from natural causes. 6 As the rising prison population is ageing in line with the wider population, the number of deaths from chronic disease or simple ageing is expected to rise, and there is likely to be a corresponding increase in the number of cases in which prisoners would benefit from planned end-of-life care. Since 2004 healthcare in prisons in England and Wales has been the responsibility of the National Health Service (NHS), and prison healthcare staff are now employed by Primary Care Trusts (PCTs), rather than the Prison Service.
In recent years the attention of healthcare policy makers and clinicians in the UK has increasingly focused on the care and support needs of people approaching the end of life. In 2008 the first national End of Life Care Strategy was published, 7 outlining a 10-year strategy for improving care at the end of life. The document highlights the need for high-quality end-of-life care to be delivered in all care settings, including prisons. In the same year, the Department of Health also produced guidance on prison health. 8 However, this document makes no reference to palliative or end-of-life care. Similarly, a Prison Service Order on clinical governance and the quality of prison healthcare, 9 which makes explicit prison Governors’ responsibilities for healthcare, does not refer to palliative care at any point. These omissions raise questions about the provision of care for prisoners whose death is anticipated. In addition, there is very little published research evidence about palliative care in prisons; a comprehensive search of seven electronic databases revealed only eight empirical papers and three literature reviews published during the past 20 years. This study, commissioned by Lancashire and South Cumbria Cancer Services Network and conducted in 2009, aimed to evaluate current end-of-life care provision for prisoners in the counties of Cumbria and Lancashire in North West England.
Methods
The study used mixed methods to gain the perspectives of prison healthcare staff and hospice staff about end-of-life care in prisons. Semi-structured interviews were conducted with both groups of staff, and a questionnaire was completed by prison staff to measure their knowledge, skills and confidence in providing end-of-life care.
Sample and recruitment
All six prisons for adult males in Cumbria and Lancashire were invited to take part in this evaluation. These prisons vary greatly in size (the smallest has capacity for 240 prisoners and the largest can accommodate 1150 prisoners) and are geographically diverse (ranging from city centre prisons to one of the most geographically remote prisons in England and Wales). Together they house over 4000 prisoners. Four hospices were also included in the study; they were selected because of their geographical proximity to the prisons.
Senior staff at the prisons and hospices were approached by the researchers to recruit participants into the study. The Governors at each prison facilitated contact with the prison Healthcare Manager, with whom a researcher was able to arrange a convenient time to visit the prison’s healthcare department. Three members of staff were identified in each prison with the help of the Healthcare Managers, and they were invited to take part in the study; those who agreed to be interviewed were also invited to complete a questionnaire. Specialist palliative care staff were recruited into the evaluation via the Chief Executive Officers (CEOs) of each of the four hospices, who provided the researchers with names and contact details of possible participants.
Data collection tools
Two interview topic guides were designed (one for prison healthcare staff and one for specialist palliative care staff); these are shown in Figure 1.
Interview topic guides.
The questionnaire focused on assessing the knowledge, skills and self-rated confidence in palliative care of prison healthcare staff, and was adapted from one used previously. 10 It consisted of 13 items designed to collect data about the experience, knowledge, skills and confidence of prison healthcare staff in relation to palliative care. The questionnaire asked respondents to rate their level of skill in relation to nine aspects of end-of-life care as either complete beginner, novice, quite skilled, competent or expert.
Data analysis
The interviews were transcribed verbatim and then analysed using a framework analysis. 11 Each transcript was scrutinized for any content relating to the aims of the project, from which frames of analysis were constructed. The researchers also remained open to the emergence of other themes not encompassed in the project aims.
Data from the questionnaires were entered into the computer programme PASW Statistics 17.0 (formerly known as SPSS – Statistical Package for Social Scientists). Numerical data were analysed for frequencies. The self-ratings (complete beginner to expert) were given scores from one to five, and mean scores were then calculated. Open-ended data from the questionnaire were subjected to a thematic analysis.
Ethical considerations
The study was approved by a Research Ethics Committee at Lancaster University on 17 June 2009. In order to access the study sites and comply with research governance frameworks further permissions were obtained from the North West Regional Psychologist for Her Majesty’s Prison Service, Prison Governors of each of the six prisons, Research and Development Managers from each of the three PCTs employing prison healthcare staff and CEOs from each of the four hospices. All study participants were provided with written information about the study and gave written informed consent before participating.
Findings
Characteristics of the sample
Characteristics of study participants
Case examples
This paper will focus on data that highlight some of the challenges inherent in providing end-of-life care in prisons, and in particular the tensions between care and custody. To begin with, two case examples are presented in Figures 2 and 3 to provide a context for the findings.
Case Example 1. Case Example 2.
The environment of prisons
The interview data provided strong evidence that, because of the need to maintain security, the prison environment (including the culture, norms, languages and practices) is far removed from that of hospices, and this presents specific challenges in bringing the two spheres together to provide palliative care to prisoners. In the case of George (Case Example 1), initial barriers had to be overcome before hospice staff were allowed to visit and assess George in the prison, highlighting the fact that access to prisons is not always straightforward. There were also concerns about how people in the hospice would react to having a prisoner in day care. For people unused to the prison environment, some of the language and practices common in prisons can appear alien, as illustrated in the following extract from one of the hospice nurses who cared for Paul (Case Example 2): What is also the issue, and I didn’t understand the terminology, he said ‘I am not getting my canteen sorted out’, and he explained that he fills in a form for stuff that he wants to buy from his money [for additional items such as sweets and tobacco] on a Friday. Because all of his [hospital] appointments were on a Friday, he was missing his canteen form, and he was being told ‘well tough, you weren’t here’. Initially I couldn’t believe I was having to do this for someone who was terminally ill with cancer. [H2]
Not only are the two environments of hospice and prison quite separate, but the data revealed that for the most part staff working in one environment had little or no experience of the other. Prison healthcare staff reported minimal experience of providing palliative care, and some lacked knowledge, skills and confidence in this speciality. Analysis of the self-rated skills scores (Figure 4) revealed a range of responses for each aspect of palliative care (indicated by the lines); mean scores are also presented (indicated by the triangles). Further analysis revealed that the areas where staff felt they had less expertise (such as bereavement support and spiritual support) were areas where less training had been undertaken.
Self-rated scores of prison healthcare staff on key palliative care skills.
However, the data also provided many examples of ways in which prison staff and palliative care staff were working to overcome the challenges inherent in providing palliative care to prisoners. Fundamental to this was the belief expressed by many of the interviewees that, as far as possible, prisoners with palliative care needs should receive care that is equitable with the wider community. Providing such care was at times challenging for staff, but could also be rewarding, and this was illustrated by a prison healthcare manager who discussed the care of one man who died in the prison: Initially some [staff] thought, ‘We can’t manage this [patient] here.’ But a lot of people got a lot out of it – they remembered why they became a nurse. [P1]
It was clear from the data that in some areas strong links between prisons and hospices were developing. One area had three geographically close prisons, all served by one hospice. In order to develop links and improve palliative care for prisoners, staff from the three prisons and the hospice established monthly meetings to discuss any patients who may have palliative care needs. Again, positive outcomes from this model of partnership working were reported; for example, one prison nurse was able to undertake a short placement at the hospice, thus improving her knowledge and skills in palliative care.
Access to medication
A major challenge identified by this study, and illustrated by Paul’s case, concerned the provision of medication for dying prisoners. Several interviewees mentioned this issue as problematic, because drug misuse is widespread amongst prisoners. One hospice doctor, for example, reported anxiety amongst prison staff that a prisoner may convince them that he needs a drug, simply so that he can then sell or share it with fellow prisoners. Even when there was agreement that a prisoner did indeed need drugs to manage his condition, interview respondents reported difficulties in administering it ‘on the wing’ (i.e. in the prison cell rather than in the healthcare unit), and fear that other prisoners may pressurize a dying prisoner into passing the drug to them: Obviously patient needs come first, we have gone through the options, and we have managed to find a dose of medication that is below the threshold at the moment, obviously if he needed it stronger… but then if we gave him strong painkillers… they [other prisoners] are all potentially pressuring. [P12]
There were also evident practical challenges in getting prescriptions written by a doctor and then filled by a pharmacist; at times this took several days, for example in the case of Paul: Another thing that has been particularly challenging and difficult for me in the prison is that it takes longer for them to get the medication in when there is a change of prescription, so when I go in and advise that a drug needs to be changed or increased on a Wednesday, that might not happen until the Saturday, it takes them that long to get the drugs [from the regional prison service pharmacy], whereas I am used in the community to advising it and starting it the same day. [H2]
As can be seen by this extract, connections between prisons and the wider healthcare systems were sometimes problematic; doctors and pharmacists were not always immediately available when needed.
Place of death
The issue of where prisoners should die is highlighted by this study. Some interviewees felt that the environment of the prison was not suitable for a dying person. One prison nurse discussed the difficulty of trying to transfer a package of care into a prison cell, commenting that: It would be nice if we had somewhere that was slightly more therapeutic than just a prison cell. [P17]
There were also particular difficulties for older and less mobile prisoners housed in old buildings, often without suitable access.
The question of how much choice dying prisoners have about where they die was also discussed by one respondent: I’m sure their preferred place of care is anywhere but the prison, isn’t it, but they don’t have that choice, or much less choice about where they die than perhaps people in the community. [H3]
The complexities surrounding place of death and choice are illustrated in both case examples. George was initially excited about the prospect of release; however, with no family or friends to support him on the outside he quickly found himself socially isolated and would have preferred to die in prison amongst people he knew. Once released, however, he no longer had the option of remaining in the prison. By contrast, Paul very much wanted to be released so that he could die at home with his family and friends around him; one nurse reported that he was very worried about his children and ‘desperately’ wanted to spend time with them. Yet his appeal for compassionate early release was refused because his oncologist considered that he might have more than three months to live (the limit required under Prison Service rules for compassionate release).
Discussion
This study provides rich evidence of the contrast between the philosophy and environment of hospices and that of prisons. It has been suggested that hospices are places outside of normal society where the ‘dirty’ business of dying is dealt with; 12 similarly, it can be argued that prisons are also places on the margins of society. The general public and most healthcare staff have little knowledge of both environments, yet there needs to be a meaningful interface between the two if prisoners are to receive high-quality palliative care. Encouragingly, the study uncovered examples of good practice, where staff from hospices and prisons have begun to develop partnerships and to share knowledge and skills. However, it also revealed significant challenges.
To begin with, the issue of where prisoners should die raises important questions about how much choice they should have about their preferred place of care at the end of life, and whether or not they should be granted compassionate release. Although the NHS strongly promotes choice for patients, those in prison are obviously subject to certain restrictions. In addition, two recent high-profile cases in the UK have added to the debate about compassionate release. 13 Both Abdelbaset Ali al-Megrahi, who was convicted of the Lockerbie bombing, and Ronnie Biggs, the ‘Great Train Robber’, were released from prison during 2009 on compassionate grounds. Neither was expected to survive for more than three months and they were therefore both eligible for compassionate release; however, over a year later both are still alive. The case examples in our study provide further evidence of the complexities surrounding this issue.
The study also highlights the need for staff training and support. Findings from the questionnaire revealed specific areas of palliative care where training would be useful; however, it could be argued that not only prison healthcare staff but also custodial staff would benefit from such training. Two research papers from the US identify a prevailing view amongst custodial staff that all aspects of the prison experience should be focused on punishing prisoners. 14,15 As previously noted, this is not typically the culture in British prisons; however, one British paper 16 identified the concept of ‘institutional thoughtlessness’, referring to the prevailing culture that all prisoners should be treated the same and there should be no special treatment just because someone is dying. Prison staff have a paramount duty of care to do everything possible to prevent a death in custody. For most custodial staff, their experience of death is likely to be suicide or other violent death; they may therefore be fearful of death in custody, not least because all deaths in custody in the UK, whether from suicide, murder or natural causes, must be investigated by the Prisons and Probation Ombudsman and have a coroner’s inquest. Awareness raising, education and support for prison security staff about managing anticipated deaths may therefore help to promote good palliative care in prisons.
In this sample we found few prisoners with palliative care needs (only three out of over 4000 prisoners at the time of the study), and some palliative care staff raised concerns about putting time and resources into improving end-of-life care in prisons for the benefit of very few people. However, with an ageing population and rising prison population, the need for end-of-life care to be provided to prisoners is likely to increase. There is also an imperative to provide high-quality palliative care to everyone who needs it, which arises from the End of Life Care Strategy. 7 Healthcare providers therefore need to find ways to implement the strategy for all prisoners who need it, even those classified as ‘Category A’ prisoners (those whose escape would pose grave danger to the public or national security).
Limitations of the study
This study was undertaken only in the North West of England and the findings therefore may not be generalizable to other areas. The sample consisted of prisons for adult men as there are no prisons for women in this geographical area, nor are there any Category A high security prisons in the sample. The study sought the views of healthcare staff from prisons and hospices; no prisoners or their families took part in the study, and further research is therefore needed to explore their perspectives. It was decided not to include doctors in the prison healthcare staff sample, as in the UK medical care in prisons is provided by local General Practitioners who spend a limited proportion of their time in prisons; however, it would be valuable to seek their perspectives in future research.
Footnotes
Acknowledgements
We offer our grateful thanks to all the staff from prisons and hospices who took part in the study. We also acknowledge the contribution of Dr Hugh Kidd in assisting with data analysis.