Four-day programme refreshes approach to end of life care in homelessness
Posted 01 June 2017 - 10:13
RCNi Community Nursing Award 2017 finalist Gilly Barringer is a clinical nurse specialist in palliative care at St Luke’s Hospice in Plymouth, who led a collaborative project with 15 charities to ensure choice at end of life care for a growing homeless community in the city. Here she reveals the motivation behind her passion for this project
‘Paul epitomised the need for a better approach to end of life care for our homeless community. He was a heroin addict and had lung cancer and was sofa-surfing after being kicked out of the hostel twice because he was too aggressive.’
Clinical nurse specialist (CNS) for palliative care Gilly Barringer felt Paul was being denied a choice.
‘After a lot of banging on doors, I got him a room in a flat where he died and where he wanted to be,’ she says proudly.
‘To get to that point there were a lot of problems, miscommunication and preconceptions. It drove me to start looking at how to talk about end of life care for homeless people.’
It was a growing problem says Ms Barringer – St Luke Hospice’s first homeless CNS. The homeless population of Plymouth had risen by 30%
Support clients
The average age of death is 40-44 years old, with advanced liver disease the most common cause. Many revolve between acute hospitals and hostels. Hostels were not seen as ‘home’ and a place to die, with hostel staff and volunteers lacking the skills needed to support their clients or signpost them to people who could help.
The hospice and Ms Barringer secured £10,000 which was used to train and create a network of 30 end of life ambassadors equipped with those basic skills.
‘Paul epitomised the need for a better approach to end of life care for our homeless community’
Her four-day programme teaches basic end of life care to staff including possible physical changes that might offer opportunities for interventions and improve access to end of life and palliative support.
It includes advance care planning, bereavement and spirituality and basic communication skills.
She asked the 15 organisations supporting homeless people to send representatives to the study days.
Empowering people
‘We had housing officers and soup kitchen volunteers attend so we had to pitch it at a level where everyone would gain from it.
‘We were empowering people to signpost clients to the right people, not asking them to be responsible for hands on end of life care with a patient.’
Participants completed a pre and post score knowledge and skills questionnaire. In all 13 areas including respecting dignity, privacy and choice, involving important others and supporting others following a death, their knowledge and skills increased.
Each cohort also took part in an evaluation workshop, identifying their clients’ needs and where the gaps were. These included the lack of equity in end of life choice of ‘preferred care’. Hostel staff were concerned about the safe storage of controlled drugs. End of life was seen as a failure so staff did not talk about it or advance care planning.
‘Staff said that they did not know who to talk to,’ says Ms Barringer. ‘When I asked volunteers and clients to write down what they would like to change in an ideal world they said communication.
‘This is a very complex client group. There are multiple services involved in their care, but none of them were talking to each other.’
Coordinating care
A fortnightly drop-in centre at a hostel, George House, was launched to coordinate care. It is attended by a GP.
‘These centres have been crucial in identifying those who may be at end of life to ensure they get the right support and care,’ says Ms Barringer.
‘It helps to initiate conversations – if the client wants to. I get to know the names and the faces so when the time is right, it is not such a shock for the hospice nurse to talk to them. I have become Gilly rather than a nurse.
‘It is also a chance to meet staff I have been teaching and support them. Relationships are really growing and the information that comes with that is phenomenal.’
‘We had housing officers and soup kitchen volunteers attend so we had to pitch it at a level where everyone would gain from it’
People will disappear – it is the nature of the group. So how does she keep track of the people nearing the end of life?
St Luke Hospice uses RAPA – Risk of Admission Patient Alert – a digital system that passes information between service providers and staff via SMS and email. Clients are rated in relation to end of life – for example ‘amber’ means they are expected to die within one year.
‘The system was in place, but it was not being used,’ says Ms Barringer. ‘It sends the client’s registered coordinator an email to say when a patient moves. It links secondary and primary care. We now have 45 clients on RAPA.
‘The main challenge is with homeless people engaging – death and dying is a taboo subject. They think it is never going to happen. But when people see a physical change there is also a realisation of a deep-seated fear.’
George House support and enterprise manager Sean Mitchell was in the first training cohort. The impact of several unexpected client deaths on him and his team at the hostel meant he found the suggestion they offered end of life care challenging.
‘The main challenge is with homeless people engaging – death and dying is a taboo subject’
When a client with cancer said he wanted to die at the hostel, Mr Mitchell was ‘clear in his mind that we were not a hospice’ and the client was moved out and passed away.
‘However, during and after the training I reflected on my experiences and the homeless client group that I have worked with for over 25 years,’ says Mr Mitchell. ‘Hostels and their staff have been about working with people to gain the skills they needed to move on into independent living, not a place to die.
Confidence building
‘With the support of Gilly Barringer and the training sessions I felt confident that we should be providing a safe and familiar environment for people to die in the place they have come to know as home.’
He now feels strongly this should be a core part of any homelessness service provision.
Ms Barringer was highly commended in the Superdrug-sponsored Community Nursing Award 2017 category of the RCNi Nurse Awards. The judges were impressed with the impact she has made despite the project being in its early days. ‘Going out to challenge people like this is brave work,’ they said. ‘There are many barriers to overcome, but Gilly is passionate and determined.’
The project is growing. A second hostel hosts a drop in clinic, which includes a housing officer. St Luke’s is seeking to create an app so volunteers and staff have service information at their fingertips.
‘Word is getting out that we are there. People are getting to know me and come and talk to me – clients, volunteers and healthcare professionals,’ says Ms Barringer.
‘This project has been about raising awareness for this particular client group and enabling them to have an element of choice’
Ms Barringer has just finished the second round of teaching to increase the number of champions by 35.
It has been stripped back and delivered in one and a half days to improve attendance rates. ‘We are focusing on the people who say they don’t want to do end of life care,’ says Ms Barringer. ‘The feedback has been positive.'
Baby steps
‘We are taking baby steps. The project has been about raising awareness for this particular client group and enabling them to have an element of choice. Enabling them to die where they want to be within reason is not something they have had before – even if they want it to be in a room in a grotty flat.’
Another man she has been supporting is at the end of his life but he is currently ‘in a good space’ – safe, warm and pain free in a nursing home, eating good food regularly for the first time and reunited with his family.
‘These clients have needs and wants and need to have those conversations,’ she says. ‘People, including health professionals, can be judgmental about this group. We have opened their eyes.’
Case study – Andy
Andy had been living at the hostel for three years.
He had been abusing alcohol since the age of eight. ‘He had a horrendous life,’ says Ms Barringer. ‘He had been on the street most of his life, never sustained a job or had a family.
‘I first met him when I started the end of life programme. He was a drop-in centre referral, who the GP recognised from his hospital admissions. His liver had gone so he was at risk of having a horrible death.
‘I used to visit him at 8am – it was the only time you could talk to him sober and I would sit next to him on a cold step, talking.
‘He wanted to die at the hostel, near his friends and did not want to be resuscitated. I worked with his GP and informed her of all of our conversations and talked to hepatology, with which he had disengaged.
‘I saw him every week. I got the district nurses involved. They used to come with me at 8.15am to dress his legs on the step.
‘The staff were the biggest problem – they said we had to move Andy. They didn’t want him there. They were volunteers and there were only two for 52 chaotic men. We told them he had to stay at the hostel but that we would support them.
‘We arranged a package of care for him in the hostel, including installing a safe for the drugs he needed.
‘He was 43 when he died in his sleep. It was less shocking for everyone as we had been building up to it.
‘I have had to deal with the fall out from Andy’s death on other clients. It puts fear into people. He had a girlfriend so I have held supervision sessions with staff to support them to support her.
‘Everything was in place and worked well – I am proud of that. It’s not perfect, but this is the best it could have been.’
The Community Nursing Award 2017 is sponsored by Superdrug