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Current and emerging practice of end-of-life care in British prisons: findings from an online survey of prison nurses
  1. Irena Papadopoulos1 and
  2. Margaret Lay2
  1. 1Research Centre for Transcultural Studies in Health, School of Health and Education, Middlesex University, London, UK
  2. 2Freelance Researcher, London, UK
  1. Correspondence to Professor Irena Papadopoulos, Research Centre for Transcultural Studies in Health, School of Health and Education, Middlesex University, The Burroughs, London NW4 4BT, UK; r.papadopoulos{at}gmail.com

Abstract

Background There are concerns about prisoners and detainees not having equal access to end-of-life care while in prison. There is a lack of existing literature about the standards of end-of-life care in UK prisons.

Objectives The aim of this study was to investigate the views of current and former prison nurses with regard to the end-of-life care being provided in UK prisons.

Methods Prison nurses were invited to participate in an online survey and asked about their role in the prison, prisoners’ access to healthcare facilities, and any barriers and good practices to end-of-life care. The survey included open-ended and closed questions. The closed questions were analysed using descriptive statistics. The open-ended responses were coded and grouped into themes.

Results 31 (N=31) prison nurses responded to the survey. The reported barriers to end-of-life care included some prison regimes, lack of appropriate care and visiting facilities, lack of privacy and inadequate visiting hours. Respondents also reported examples of good practice, including having access to specialist palliative care and specialist equipment, and being able to receive visits from family and friends.

Conclusions The findings suggest that there is considerable variability in the end-of-life care provided to prisoners in the UK. Further research is needed in order to reduce the health inequalities and improve the quality of end-of-life care experienced by prisoners in the UK.

  • Terminal care
  • Nursing
  • Prisons

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Introduction

Within the UK and Europe, there have been growing concerns about prisoners’ health and healthcare. A number of initiatives have been instituted in England and Wales, the most significant of which was the transfer of responsibility for commissioning healthcare from the Criminal Justice Service to the National Health Service (NHS) via primary care trusts (PCTs) in 2006. In April 2013, ‘NHS England’ took over from the PCTs.

The prison population in the 60-plus years age group in England and Wales has nearly doubled since 2002, and it is the fastest growing age group.1 Consequently, it has been recognised that demand for end-of-life (EOL) care is likely to increase due to higher rates of chronic diseases in the older prison population.2 Prisoners are reported to experience accelerated ageing resulting in age-related disorders occurring from 50 years of age onwards, and 85% of older prisoners have a long-standing disability or illness.3

In order to overcome the barriers in meeting prison healthcare standards, prisons have been included in the national EOL care strategy.3 Other guidance on EOL includes The Route to Success in EOL care—achieving quality in prisons and for prisoners.4

EOL care in prisons has received scant attention from researchers in the UK compared with that received in the USA.2 ,5 ,6

The existing evidence suggests that although there are examples of good EOL care, this is not consistent across the system.7 An investigation of deaths from terminal or incurable diseases in prisons in England and Wales, between January 2007 and October 2012, reported that the average age at death of the 214 prisoners reviewed was 61 years; with 58% being aged 60 years and over. The review also stated that prisons varied in the level of EOL care provided to prisoners. It was noted that 29% of prisoners in the sample did not have a palliative care plan.8

A number of pilot initiatives have recently been established in prisons in England and Wales. The King's Fund is leading a programme called Enhancing the Healing Environment, which aims at improving environments for EOL care.9 Since the launch of the 2010 programme, 34 prisons have joined the programme.

A 15-bedded unit has been developed for older people in Norwich prison, which is unique in the UK. Staff members were trained by the local hospice and can refer to hospice medical and nursing staff for advice and support. The Gold Standards Framework and Liverpool Care Pathway for the dying were implemented in the unit.

Additionally, in 2010, the National End-of-life Care Intelligence Network (NEoLCIN) was established to improve the collection and analysis of national data about adults’ EOL care in England.10

It was within the context of these major developments and shifting responsibilities for healthcare commissioning in prisons, that the authors undertook an exploratory survey of current and former prison nurses in England and Wales.

Methods

An online survey was undertaken with a 19-item questionnaire. Target respondents were nurses (of any grade) working in prisons in England and Wales, and former prison nurses who had left these posts within the previous 2 years. The survey was distributed via email to key professionals who were requested to email it with the covering letter to affiliated networks of nurses. Data were collected between February and June 2014.

Findings

A total of 31 people responded. Most of the respondents were female: (25/31: 81%) and had worked or were working in prisons from category A (maximum security; n=6) to D (open prison; n=7), though most worked in category B (mainly holding people on remand; n=23) and C (prisoners who cannot be trusted in open prisons; n=16). One respondent worked in another category of prison.

Respondents were, or had been, employed in prisons in all regions in England, apart from the East of England; there were no respondents from Wales.

The prison populations with whom our respondents worked ranged in size from 189 to 1650 with a median of 1320 prisoners; two respondents worked in prisons accommodating small numbers of female prisoners. Table 1 shows the nursing roles of the respondents.

Table 1

Respondents’ role within the prison

Over half of the respondents reported being NHS employees (n=18). Almost a fifth were still employed by the prison service (n=6) and a further fifth, by a private healthcare provider (n=6). One respondent was employed by another type of employer.

Most respondents (24/31: 77%) reported having worked for at least 2 years and almost half of them (14/31: 45%) reported working in their role for more than 6 years. None had worked for <6 months in their current or former prison nurse role.

Most (21/31: 68%) reported having undergone some training in EOL care practices or palliative care. The two most cited types of training were (1) previous experience as a community nurse and (2) short courses being delivered at or by a hospice.

When asked whether the prison they work in—or used to work in—has/had a written policy for EOL care, 12 (n=12) said it did, 4 (n=4) said it did not and 7 (n=7) were not sure.

Respondents were asked if their prison had any special EOL facilities or resources. Table 2 shows the special facilities that were reported.

Table 2

Special healthcare facilities or resources

Most respondents reported that there were some special considerations or privileges given to terminally ill prisoners. The most common were: less restricted visiting times (n=15), compassionate leave outside prison (n=10) and an open cell policy (n=9). However, less than one-fifth (n=4) reported that children of any age were allowed to visit.

Respondents reported the following barriers and examples of good practice in EOL care.

Barriers to EOL care

  1. Environmental barriers

    • Not having a palliative care/EOL care suite

    • Lack of a hospital wing

    • Lack of a quiet environment

    • Dying prisoners being nursed in a single cell ‘where they may die alone’

  2. The prison regime

    • Prohibition of pets being brought in

    • Family or close friends not being allowed to visit for long periods

    • Lack of flexibility and privacy

    • Absence of special facilities for close relatives/friends to use on extended visits

    • Restrictions on children of any age visiting

  3. Security issues

    • Lock down periods and no open door policy

    • Lack of willingness of senior staff to recognise that a terminally ill prisoner would no longer be a threat to society.

Good practice in EOL care

  1. Access to specialist palliative care

    • Providing closer attention to a prisoner following a terminal diagnosis

    • Accessing community palliative care services, to attend to the patients within the prison, or provide advice particularly in relation to symptom control

    • Good communication links with local hospices, and coordination of care through interagency case conferences and regular meetings to discuss patients

    • Releasing of prisoners to receive hospice care when required or admittance into a side ward of a hospital

    • Opportunities for training through hospice links

  2. Specialist equipment/environment

    • Availability of syringe drivers and air wave mattresses

    • ‘Kings Fund’ bedrooms in an inpatient unit

    • A specifically upgraded nursing area for the provision of palliative care

    • Quiet ‘older person wing’ with ground floor shower, grab rails and shower seat

  3. Policies

    • ‘Named Nurse’ policy

    • EOL care policy

    • 24 h Unlock policy could be instituted (risk assessment permitting), giving prisoners round the clock access to nursing care

  4. Inmate and prison staff support

    • Prisoners having access to a ‘Buddy system’ whereby care is provided by fellow prisoners who are trained for the role and supported by nursing team

    • Having the assistance of prison wing staff

  5. Greater access to family and friends

    • Good liaison with family members

    • Allowing terminally ill prisoners greater (sometimes unlimited) and more flexible access to family visitors.

Discussion, conclusions and limitations

Our findings suggest while there are examples of good practice, some terminally ill prisoners are still being nursed in their cells without 24 h access to nursing care. This contravenes the recent WHO directive, stating that ‘prisoners share the same right to health and well-being as any other person’.11

As the numbers of prisoners requiring EOL care are increasing, transferring prisoners to die in hospitals or hospices may not be the prisoner’s choice and it will, most likely, be more expensive. Ensuring prison nurses have relevant expertise may enable more prisoners to die in prison among familiar people, if this is their wish.

Indicating a future commitment to improving prison healthcare, a partnership statement has been drawn up between the National Offender Management Service (NOMS), NHS England and Public Health England, that details the shared principles and priorities for future prisoner healthcare.12

There are some limitations to our study. For the sake of anonymity, and in the hope of eliciting frank responses, we chose not to ask which prison each respondent worked in. Consequently, we do not know whether more than one respondent reported on an individual prison. This, along with the small sample size, means our findings must be interpreted with caution.

References

Footnotes

  • Contributors IP designed the study, managed the study, designed the questionnaire, contributed to analysis and drafting of the article and revised the article for important intellectual content. ML contributed to data analysis and drafted and revised the article for important intellectual content.

  • Funding This study was supported by a small grant from the Department of Mental Health Social Work and Integrative Medicine, School of Health and Education, Middlesex University.

  • Competing interests None declared.

  • Ethics approval This study received ethical approval from the School of Health and Education ethics subcommittee, Middlesex University.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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