Dying with dignity in a hostel
A nurse-led training initiative has given staff in a hostel for homeless people the skills and confidence to care for clients at the end of their lives.
A nurse-led training initiative has given staff in a hostel for homeless people the skills and confidence to care for clients at the end of their lives
Homeless people are dying in unsupported and unacceptable situations with inadequate access to palliative care, a recent study found.
Those with advanced ill health rarely receive adequate care and support in the community, resulting in repeated unplanned and emergency hospital admissions, according to the researchers from the Marie Curie palliative care research department at University College London, Pathway, St Mungo’s and Coordinate My Care.
The study also said hostel staff often end up caring for some of the most unwell homeless people, despite not having had palliative care training or support to do so.
Researchers found that a conflict between the recovery-focused nature of homeless services and the realities faced by homeless people during illness often results in a lack of person-centred care.
An innovative nurse-led approach to reducing the inequalities experienced by homeless people at the end of life is already addressing the issues raised by the researchers.
Gilly Barringer, a clinical nurse specialist in palliative care at St Luke’s Hospice in Plymouth, has trained hostel workers, healthcare professionals and soup kitchen staff in the basic principles of end of life care.
'People have a right to die in the place they call home'
Sean Mitchell, manager of the George House hostel in Plymouth, explains how the training provided by Gilly Barringer has transformed his views of end of life care for homeless people
‘We had difficulties offering end of life care to residents at our hostel before the training and support offered by Gilly.
‘We had experienced two or three deaths, which affected the staff team and prompted a meeting with St Luke’s Hospice nurses.
‘Offering end of life care to our client group was a challenge for me personally, having directly dealt with unexpected deaths. I also had a client with cancer say he wanted to die in the hostel, but I was very clear in my mind that we were not a hospice. He was subsequently moved to a hospice, where he later passed away.
‘I have worked with homeless people for over 25 years and never thought a hostel would have to consider becoming a preferred place of death. Hostels and their staff have been about working with people to help them gain the skills to move on into independent living, not a place to die.
‘Some hostel staff see it as challenging, but understand there are no options available for this client group and will do their best to support them in the hostel at the end of their life.
‘Others feel very strongly, understandably, that they have not signed up to deal with dead bodies and the levels of distress that this can bring to all concerned, and believe that these clients should be supported elsewhere.
‘I was in the first cohort to undertake the excellent and thought-provoking end of life training Gilly offered, and most of my staff have now completed it. I feel strongly that this should become a core part of any homelessness provision, whether in day centres or in the (hostel) accommodation itself.
‘Going out to challenge people like this is really brave work. There are so many barriers to overcome, but Gilly is passionate and determined’
RCNi Nurse Awards judges
‘The end of life conversation is a vital and extremely supportive, honest validation of the homeless person’s situation that prompts them to tell their life story. It also supports people to try to meet family and create positive closure where possible.
‘Service providers and commissioners need to embrace and talk more openly about this area so they can support the teams directly dealing with clients at the end of life. We have a national problem talking about, dealing with and supporting dying and death.
‘Gilly has introduced drop-in sessions at the hostel to enable conversations about end of life with clients and support staff.
‘We have become more aware as a team of the issues around death and talk more openly about it. The views of the staff who feel a hostel is not a place to die are acknowledged and respected.
‘There are still challenges. Resources are limited and we have had to learn they are not available on tap, or for 24 hours a day. We only have two staff on after 5pm and at weekends, so it presents a challenge when a death happens at these times.
‘However, Gilly has gone over and above to support me and my team to make end of life support manageable. She understands the challenges in the hostel and the need to try to minimise spreading distress around end of life in the homeless community – which is rather like a big goldfish bowl.
‘Her monthly support sessions and one-to-ones have been invaluable. She is always at the end of the phone and provides a rapid response.
‘I have learned, and feel strongly, that people should have the right to die in the place they call home, and if that is a home for homeless people then so be it.
‘Dealing with a dying person is difficult, challenging and at times distressing, and each one affects people in a different way, but with support and training provided by Gilly, the team has pulled together.’
Clinical nurse specialist Gilly Barringer launched the training programme for healthcare professionals and support workers when the rapidly growing homeless population in Plymouth made it impossible for St Luke’s Hospice to provide end of life care to everyone in this community who needed it.
She used a £10,000 grant to create and train a network of 30 end of life ‘ambassadors’ equipped with the basic skills needed to support their clients or signpost them to people who could help.
The four-day programme includes advance care planning and explores bereavement and spirituality, as well as basic communication skills. It highlights physical changes that might offer opportunities for interventions and access to end of life and palliative support.
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 they did not talk about it or about advance care planning.
‘When I asked volunteers and clients to write down what they would like to change in an ideal world, they said communication,’ says Ms Barringer.
‘This is a very complex client group. There are multiple services involved in their care, but none were talking to each other.’
A fortnightly drop-in centre at the George hostel, attended by a GP, was set up to coordinate care.
‘These clinics have been crucial in identifying those who may be at the 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.’
Ms Barringer has just finished a second round of teaching, increasing the number of end of life ambassadors to 65.
She was highly commended in the Superdrug-sponsored Community category of the RCNi Nurse Awards 2017.
‘Going out to challenge people like this is really brave work,’ said the judges. ‘There are so many barriers to overcome but Gilly is passionate and determined.’
Elaine Cole is managing editor, Nursing Standard
Read more about the project and some of the homeless people it has supported at end of life here
Reference: Shulman C et al (2017). End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care. Palliative Medicine. doi: 10.1177/0269216317717101