‘Patients not prisoners’: Palliative care nursing behind bars

The UK’s older age prison population is growing, and with it the number of nurses providing specialist palliative care in a prison environment.

Madeleine Anderson looks at how this care is provided and how it compares to the services delivered in more-typical hospice or hospital settings.

She asks why prisoners may choose to die in prison rather than moving to a hospice, and how care can be adapted to ensure each patient has the best death possible.

The UK’s older-age inmates are the fastest growing group in the prison population, with 17% of inmates in the UK’s prison estate being aged 50 or above. Strikingly, the number of prisoners aged 60 and over has also increased by 82% in the last decade, and 243% since 2002.

The Dying Well in Custody Charter

The Dying Well in Custody Charter is used by healthcare workers and wider staff as a framework for delivering high quality and end of life care within prison settings.

The guidance was introduced in April 2018 in England, but it is not mandatory, and it is hard to know how many prisoners are impacted by the Charter at any one time.

It aims to ensure every member of the prison population has access to dignified, equal and compassionate care at the final stages of their life.

The Charter is divided into six points, each with instructions for how the ambition should be achieved.

It pushes healthcare staff to centre patients in a prison environment, to provide personalised care which is delivered through collaboration between prison and health professionals.

The six ambitions of the Dying Well in Custody Charter:

Each person is seen as an individual, including flexibility in prison regimes to meet individual needs.
Each person gets fair access to care, providing needs assessments which consider protected characteristics.
Maximising comfort and wellbeing, delivering timely, qualified care assessments.
Care is coordinated, with individual care plans shared across teams.
All staff are prepared to care, with staff training and supervision on palliative care provision.
Each community is prepared to help, providing emotional and practical support for families, staff and peers.

What impact has the Charter had?

Maria O’Neill is a specialist palliative care nurse working across prisons in Cambridgeshire. Prior to her current role, she worked as a hospice nurse for over two decades and was one of the original contributors to the Charter.

She recalls how when she first joined prison nursing, very few of her patients required palliative care services, but that this quickly changed as the number of older prisoners increased.

‘I went to prison for a change, and when I joined there was no cancer in the prison at the time. Very quickly, after about 18 months, we started seeing the elderly population become bigger and bigger,’ she told Nursing in Practice.

This was because of a rise in prisoners being convicted for historical crimes. This included prisoners being recalled for breaching their release conditions or increased convictions for historic crimes, such as sexual offences.

Ms O’Neill now solely focuses on palliative care and has her own caseload across three different prisons.

She says the Charter should be used as a ‘fantastic guideline on how everybody should be treated’.

She explained how the Charter is now central to her approach as a specialist palliative care nurse and described how she built upon her previous hospice work to develop her role in prisons.

‘I was able to take what I had learnt as a hospice nurse into prison and pilot it. So, I took it through from the very beginning to the very end, and now for me it’s just part and parcel of what and who we are at the prison,’ she said.

‘Whether you’re in prison or a hospice, you use your clinical observations and questioning to find out how that patient is actually feeling, and actually communicating with the patient is one of the biggest things that you can do,’ Ms O’Neill added.

The care ‘will never be equal’

While praising the difference made by the Dying Well in Custody Charter, Ms O’Neill cautions that the palliative care provided in prison ‘will never be equal’ to care given in hospice settings.

One key reason for this is that few prisons provide 24-hour care, despite this being one of the goals of the Charter. So, healthcare professionals are often unable to stay overnight at facilities so cannot provide the consistency and length of care in prisons that they may otherwise give at end of life.

‘I find that really heartbreaking, because I want to be able to be there for my patients,’ Ms O’Neill shares.

Summarising her approach, she said: ‘we’re all human’, regardless of what we’ve done in our lives and said she is not there to punish prisoners for the crimes they have committed.

‘It’s not for me to judge. They’ve been judged; they’re already in prison,’ she says.

Despite the challenges of her role, Ms O’Neill encourages ‘compassionate’ nurses to join prison nursing.

‘There are opportunities to grow, you can have the chance to do the best and be the best,’ she says.

Working in a prison cell

Deanna Mezen has worked in the English prison system for almost two decades, and values the independence the role encourages. She is currently an advanced clinical nurse practitioner at HMP Oakwood in Wolverhampton.

Ms Mezen provides a range of services, including trauma care, pre- and post-surgery care, stroke rehabilitation, and palliative care.

‘We do every type of nursing you could imagine,’ she says.

‘Prison nursing is very nurse-led, so you’re very autonomous in your practice,’ she adds.

Many people living in the prison population have multiple co-morbidities and conditions that are ‘challenging’ to manage in a prison environment, she says.

Ms Mezen has seen firsthand the difference that the Charter can bring to palliative care prison services and has worked for the charter to be adopted at HMP Oakwood.

‘Having the charter in place, working alongside the prison authorities, really makes a massive difference to the patients,’ she says.

Choosing to die in prison

Many prisoners choose to die in prison, rather than transferring to a hospice, especially if they have been serving a long sentence and have built a community within the inmate population.

Ms Mezen recalls how in the last five years, she has only worked with two men who have chosen to die in a hospice rather than return to the prison setting.

‘The rest of them have all decided that they want to stay with us, because they see us as family. They’ve been in prison for quite a long time.

‘They might have lost family contact, so their peers are their family and their friends; they want to stay where they are,’ she explains.

When patients do attend appointments or receive care in hospice settings, they are accompanied by plain clothed officers and, as a rule, are not restrained and do not have to wear handcuffs when they are at the end of life.

‘Obviously, the [other] patients and families won’t know that they’re a serving prisoner,’ Ms Mezen says.

A prison officer’s perspective

Carol Barnes, a senior prison manager at HMP Five Wells says the Charter has encouraged her to ‘think outside of the box’ as a prison officer.

‘I’m a caring person anyway, but it does make you feel more compassion to inmates as people and as patients, rather than just as prisoners.’

She also believes the Charter has improved how the prison officers and approaches as well.

‘It’s made them look at us that, actually, we are human beings, and we do care, and we’re not here to lock people up and throw away the keys.’

She recalls how, before the Charter was introduced at the prison where she works, care could be ‘cold’, whereas now it is more likely to be guided by ‘care and compassion’.

‘This helps inmates realise that actually a lot of staff do come into work and do show a lot of thought towards them all, rather than just those that are dying.’

Making sure the prison is onside

Beyond improving the relationship between the nursing staff and prisoners, Ms Mezen says the Charter has also been helpful in ‘making sure the prison is onside’ and recognising that the inmates are ‘patients’ in the nurses’ eyes.

‘Unless you’ve got the governors and the officers on your side, it will never work,’ she warns.

She explains how the Charter helps give prison nurses the confidence to explain the needs of their patients to wider prison staff, such as when expressing where the patient wants to die.

‘As a nurse, it’s given me a lot of self-value in the work that we do as nurses to make sure that our patients are at the centre of our nursing care.

‘So, I think the Charter embeds that strength to be able to say to the officers, “No, you know that they don’t want to go to hospital. This is where they want to be”.

‘Prison officers don’t come into prison expecting to be looking after people that are dying, so it’s giving them the education to understand that this is their home.’

Adapting the prison

Ms Mezen recalls an example of how, beyond clinical care, the prison environment had recently been adapted to make the final days of one patient more comfortable.

She described how the nurses and officers worked together to change the table layout in the halls so that no one would walk past the door of the cell where the man was based, which was located in a typically very busy and noisy area.

‘We made sure it was really nice and quiet for him. So, it’s not just our carers that get involved. It’s the whole population of the wing that gets involved.’

Caring for the wider prison population

The Charter also focuses on the follow-up care that the wider prison population may need after the death of an inmate, not only on the direct care for the patient themselves.

At HMP Oakwood, this includes providing memorial services, where prisoners can be given support when grieving the loss of a friend who they may have lived with for a very long time.

Ms Mezen is also involved in a buddying service, through which prisoners receive support from other inmates, or for dying inmates to receive companionship from a friend who can sit with them in the final days of their life.

Ms Mezen believes this also helps build trust between prison staff, healthcare professionals, and the prisoner population.

‘It is a massive thing for them to see that, if they were to die with us, that they would also get the same support,’ she concludes.