End-of-life care in prisons

The number of older people in prison has been rising in many countries. Their health and social care requirements are not always compatible with prison regimes and infrastructure. In this blog, Lynn Saunders, former governor of HMP Whatton in England, describes some of the challenges in providing health care to older persons in prison, including end-of-life care.

There is no global data on the number of older persons in prison. Known rates vary from 1.8% of the national prison population in Indonesia to as high as 20% in Japan, and in many countries the number has been growing at a faster rate than the general prison population. This poses specific challenges for health and age-related policy and practice in prisons, as older people in prison are more likely – compared to both younger people in prison and people of the same age living in the community – to have disabilities, multiple, chronic health conditions or age-related cognitive impairment such as dementia.

The physical prison environment and layout – particularly buildings which are very old – may be challenging for an older person, including poor lighting or ventilation and uneven flooring. Older persons often suffer from physical disabilities, mobility problems, sensory and/or cognitive impairments which make day-to-day life more challenging in a prison setting.

The prison estate in England and Wales consists of a number of older buildings with associated access issues. Buildings that had been built in the 19^th century still hold people in overcrowded, cramped and less than hygienic conditions, and even more modern prisons have comparatively small cells, and limited facilities for people with mobility or complex health needs.

Governors have the responsibility to ensure that people in their care receive the same standard of health and social care services as people in the community

The prison service has been described in recent years as the biggest care home (residential home for people with special needs) provider in the country. This was in recognition of the growth in the number of older people in prison. There are a number of reasons for this growth: judges giving longer sentences, including a rise in life sentences, some people being sent to prison later in life (in part due to the prosecution of non-recent sexual offences). Although the number of people serving whole-of-life sentences in prisons in England and Wales is small (approximately 64), there has been an increase in the overall number of people serving indeterminate sentences. Over time, this growth in the number of older people in prison has resulted in significant challenges for governors of prisons with high numbers of older people. Governors have the responsibility to ensure that people in their care receive the same standard of health and social care services as people in the community.

In parallel to this growth in older people in prison in England and Wales, there have been a significant number of people in prison dying from natural causes. Although there are provisions for the release of people on compassionate grounds, this is not commonly utilised, particularly for people with high profile offences or for people who are considered to be a continuing danger to the public. The release of people from prison on compassionate grounds is also politically sensitive and requires a range of people based in the prison (including clinicians and security staff) where the individual is held to agree that they are terminally ill, that they no longer pose a risk to the public and that there is suitable provision for their care in the community. Because of these difficulties, it has been necessary for individual prisons to adapt their accommodation to provide dignified and supportive palliative care services to people in prison. Due to the length of their sentences and sometimes the nature of the crime for which they were sentenced, people in prison do not always have family connections and support. This means that their friends and supporters are other people in prison.

Providing a service – Challenges and solutions

I became the governor of HMP Whatton, a large 841 place site for people with sexual convictions, in 2008 where I was governor for some 13 years. Whatton is a specialist treatment site providing a range of cognitive behaviourally based treatment programmes. It provides 40% of the programmes in custody for the whole of the prison service. Eighteen percent of the population is over 60 years of age and 58 people are over 70. During my time in Whatton, the oldest resident was 93. In my 13 years as governor of Whatton there were 69 deaths. Some of these were sudden unexpected deaths (heart attacks, strokes, etc) but the majority were expected, largely due to cancer, chronic obstructive pulmonary disease, or other long-term conditions.

Compassionate release was not an option for many people serving long-term sentences for serious crimes, because of their continued risk of reoffending, and potential political concerns about the perceived reduction in the credibility of the justice system. In addition, many older people in prison have limited community support available. Transfer to a hospice was often difficult due to the nature of the offences and the availability of hospice beds. But more importantly, terminally ill people leaving prison could be left isolated in their last days of life with no friends or family to visit and care for them.

A group of staff and people in prison approached me as governor to consider whether people in prison should be given the choice to die in prison, to be around their friends and familiar and supportive staff in their last days. Although I had some reservations about the practicalities of this arrangement, I agreed that we would earmark a downstairs area of one of the residential units on a trial basis for end of life care. This arrangement had its challenges, even on a very practical level. For example, the hospital beds needed to be dismantled and to be reassembled in order to get through the cell doors. The lack of space was also problematic as a palliative care patient often needs a significant amount of equipment, such as oxygen cylinders or syringe drivers.

despite the limitations of the environment, terminally ill people in prison should be offered the choice of dying in prison and the opportunity of a dignified death

There was also the issue of privacy and safety for the terminally ill person on a residential unit with twenty-three other people. As the prison “locks up” people at 20.00 until 8.00 the following day (meaning people are locked in their cells overnight), there was also the issue of healthcare staff having access to the palliative care patient during the night to be able to provide care support and reassurance in their final days. Despite these challenges staff and managers were keen to ensure that despite the limitations of the environment, terminally ill people in prison should be offered the choice of dying in prison and the opportunity of a dignified death – i.e. One without pain and with the opportunity to make peace with the world. This was especially significant for people who had committed very serious crimes, opportunities to reflect on their lives were important and the prison chaplaincy service, volunteers and wing staff were key to enabling this.

Risk assessments needed to be agreed with the security department and the Prison Officers Association to allow the cells where palliative care patients were housed to be unlocked overnight (this is not something that is usually allowed in a secure prison, due to reduced staffing levels and security and safety concerns). There were also additional challenges when a palliative care patient’s loved ones wanted to visit him in his final days. Visits needed to take place on the wing as the patient was often too frail to move to the visitors hall. This posed potential problems for the safety and well-being of both the visitors and the other people in prison.

A further challenge occurred when the person passed away. All deaths in prison custody are investigated by the coroner and it is not possible to move a body until the police are satisfied that there are no suspicious circumstances surrounding the death. In the intervening period the cell needs to be secured as a crime scene (even if death was expected) with the body in situ. This obviously causes some concern for the other people living on the unit, and some disruption to the prison regime. In 2010, Whatton applied for capital funding from the Kings Fund to convert a storeroom in the healthcare centre into a palliative care suite. This was modelled on a hospice to provide a safe, dignified end of life facility away from the main prison wing but within the confines of the prison. Thus, enabling people in prison (and if applicable family members) to visit, and to enable the facility to be secured as a crime scene following the death of the person, thereby avoiding additional stress and pressure on other people resident on the unit.

The “Retreat” end of life facility opened in 2011. It has an outdoor area with a pond. This area allows occupants of the facility access to the open air (weather permitting). The Retreat also has a staff area and space for medication to be stored safely. Access to the facility is restricted and monitored when in use to ensure that the occupant is kept safe. Specially trained family liaison officers were recruited and trained to liaise with the next of kin (if there was one) to ensure that family members were supported and given advice about the process following a person’s death in prison (there is always a police investigation and an Inquest).

After death, the funeral is often the opportunity for friends and family members to pay their respects and to celebrate the life of the deceased. After the death of a person in prison, this inevitably takes place outside the prison usually at the local crematorium, often with only prison staff in attendance as friends who were resident in the prison are not permitted to attend the funeral. To compensate for this and to ensure that fellow people in prison are given the opportunity to say their goodbyes, memorial services inside the prison utilising either the prison chapel or the visitors hall (depending on numbers) are organised.

a safe and dignified death can be achieved with caring staff, compassion, some imagination and enthusiasm to overcome challenges

In conclusion, palliative care in prisons can be challenging not least because of the restrictions of the environment. But a safe and dignified death can be achieved with caring staff, compassion, some imagination and enthusiasm to overcome challenges brought by the very nature of prison settings.