Delivering end of life care in prison

The community nursing team at St Luke’s Hospice in Plymouth are running an award-winning project that is improving end of life care for inmates at Dartmoor Prison. Here specialist nurse Martin Thomas tells us about the unique challenges of delivering care in a Victorian prison.

How did the project come about?

 We have been working with the prison for the best part of 15 years because Dartmoor prison is about 15 miles away, in the middle of nowhere but firmly on our patch. We would generally see two or three patients a year who were diagnosed with advanced cancer and support them as much as we could.

Dartmoor is a male category C prison with 630 prisoners, and generally prisoners have a higher than average incidence of chronic disease such as lung and heart disease, diseases associated with a lifestyle that is not the healthiest. We’d expect to see at least seven or eight people a year diagnosed and die from chronic or life limiting illnesses, we thought, why are we not seeing more people?

Around 2013/14 the prison Ombudsman and Macmillan said we should increase the care provision in prisons, so we had more of a dialogue with them and found that they were really up for trying to do things differently. In 2014-15 the matron of the prison, Derek Hart, the clinical specialist working with St Luke’s who covers Dartmoor, and the local Macmillan Living With and Beyond Cancer project got their heads together and drew up a process by which the Macmillan team would do more for people at the prison rather than them have to come offsite.

What are the biggest challenges to delivering end of life care in a prison?

 The prison is very self-contained and does what it can within its system by having a sick bay. It is very nurse-led with GPs under contract coming in to support them, and they provided a limited care provision during the day.

If the prisoner needed anything they would be escorted to the local hospital 15 miles away in Plymouth and be seen in clinic like anyone else, but with two guards. That is a challenge in itself for the prisoner and the prison, because if two of the prison warders are escorting a prisoner to the local hospital that is two they haven’t got to help round the prison. If you have three or four prisoners having to go to clinics then you can end up having to lock down the prison. That meant they would historically ship people out, so they would move them to a facility where they have a hospital wing, like Exeter prison.

 When you began the project almost a third of prisoners did not have an advance care plan to support them with terminal illness – why was this?

The primary function of jail is justice and punishment so when it came to having discussions with prisoners about what their end of life advance decision making might be, it wasn’t happening. If someone had an illness the focus would be on security and management of moving them to a place where it looked like their needs were going to be met better.

What we realised was that it could be different, and the big question was where could we, in a normal run of the mill old Victorian prison like Dartmoor, do things differently with end of life. Could we increase the knowledge of the healthcare staff, warders, the governor and all the support structure around them? Could we, by increasing their knowledge and understanding of end of life, equip them to have these discussions, equip the healthcare team to be able to cope with more complexity and look at where the prison could do things differently with maybe increasing the amount of care someone could have in their cell? Could it actually mean that there are more options for prisoners approaching the end of life?

How receptive were staff to this?

They were amazingly receptive. The average age [of prisoners] is increasing, and they could see that moving people wasn’t the best thing for the system or the prisoners, and looking after people for longer at Dartmoor was better for everybody, so they started putting in more of a care structure.

Dartmoor has three main wings, two of them are big five-storey wings like on Porridge where you’ve got a central well, balconies and skylights. They accommodate the lion’s share of the prisoners, and then you’ve got one smaller wing called F-wing which is only two storeys high and is a quieter place they decided to turn into more of a social and healthcare residential wing. As people were diagnosed with illnesses or their needs increased they moved them there and they had warders who volunteered to work on that wing who’d be prepared to help.

What have the project’s main successes been?

Both the prison’s management and healthcare team have really engaged and have a fantastic can-do attitude. When we’ve been faced with challenges like setting up end of life and palliative nurse-led clinics they’ve said yes. Now every first Wednesday of the month there’s a nurse-led clinic where prisoners can be booked in and seen by our nurse Derek.

If they’re too frail he can visit them in their cells and work with the prison team to look at what their health and psychological needs are approaching the end of life, so that’s fantastic. At both clinics advance care planning is discussed, so a big change is that there is dialogue now about prisoner’s wishes.

The priority will always be security and justice, but because we now know what the prisoners are thinking, instead of saying that because they’re increasingly frail and they’ve got more pain maybe we should shift them to Exeter, the question is what are the prisoner’s wishes, do they want to stay here and then the team decides if that is possible, and it has been in a lot of cases.

We actually had a prisoner who had cancer and he was quite complex in his symptom management, but we looked after him and he died in his cell on F-wing. If he could he wanted to stay at Dartmoor till the end. The prison did really amazing work, making adjustments like putting a drug cupboard and a hospital bed in his cell.

If we hadn’t been doing what we were doing with this project, the chances are he would have been transferred to hospital where you’re talking a lot of money to put two warders with him around the clock, whereas if he’s in his prison cell and you’re putting in a care package for a few days that’s a lot cheaper. It’s a great possibility for saving the prison service a lot of money, which will catch people’s attention, but I don’t want it to be the main part of what we’re saying.

What was it like to receive the Burdett Nursing Award?

We were sitting there not knowing what was going to happen, they read our name out for the first category which was Delivering Dignity and we thought that’s fantastic! Then we came to the last award which is the overall winner and they read our name out again, so we sat there shocked. It’s fantastic to look at what we’ve achieved with Dartmoor and the prisoners. To have this recognition, it catapults you into the spotlight for a while and we want to make the most of that and engage as much as we can nationally to get the word out.