Better End of Life Care for People Who are Homeless in Plymouth
26 June 2018 | Gilly Barringer and Elizabeth Lawley, St Luke's Hospice
In Plymouth, as in many other cities, homelessness has increased in recent years.
People experiencing homelessness have an increased risk of premature death that is well documented. Despite this, according to recent research by Queen’s Nurse Wendy Webb, Caroline Shulman and others, people who are homeless face extensive barriers to accessing the end of life care they need.
Gilly Barringer, a Community Clinical Nurse Specialist working for St Luke’s Hospice in Plymouth, picked up this challenge and set about developing better support to homeless people at the end of their lives.
Gilly, with the support of St Luke’s Deputy Clinical Director, Gail Wilson, met with local homeless hostel staff, volunteers in soup kitchens, street pastors and rough sleeper teams to talk about how to spot terminal deteriorations in health. These conversations identified that homelessness workers needed more confidence to talk about the possibility of dying and how to access support.
Thanks to a grant from Health Education England, Gilly started a project aimed at increasing care and choice for people who are homeless in Plymouth at end of life. Gilly and Paula Hine from the hospice education team began by leading a four day education programme for staff and volunteers from 15 different organisations in the city supporting homeless people. This programme created a network of 35 end of life ambassadors with the necessary skills to support clients at end of life or to signpost them to the people and services that could help them.
The programme included: recognising opportunities for interventions as health deteriorates, advance care planning, bereavement and loss, spirituality and communication skills.
Evaluations demonstrated increased levels of skills and knowledge in these areas, as well as respecting dignity, privacy and choice and supporting others after a death. The volunteers involved reported greater confidence in feeling able to start difficult conversations and signpost in situations where they had previously been concerned, but had felt powerless to act.
Hostel Manager Sean Mitchell received the training and became an ambassador. He recognised the challenges of taking on an end of life care role but felt empowered by the programme. With Gilly’s support he felt that the hostel could be a safer and more familiar environment in which to die, for someone who had come to see the place as their home.
Sean’s new-found confidence was put into practice when a hostel resident of three years, who had been drinking alcohol since the age of eight, was supported to die in the hostel. District nursing visits, a package of care, installation of a safe for his medication and bereavement support for his girlfriend were components of the teamwork which enabled this to happen.
Key elements contributing to the success of the project were workshops and focus groups, where participants were asked to identify gaps in local service provision and consider how local services could work more effectively together to support people experiencing homelessness. Local services involved included GPs (through their GP lead Dr Jameson), local drugs and alcohol services, hospital hepatology, hospice nurses and homeless hostels.
A strong theme emerging from the evaluation workshops and the focus groups was the need for clearer communications between primary and secondary care to improve continuity and equity of care and avoid vulnerable clients ‘falling through the gaps’.
This also led to professionals wanting to intervene earlier, targeting not just the homeless but anyone in situations predisposing them to becoming vulnerable and ensuring that a healthcare professional who knows the individual well is identified as their care co-ordinator, to prioritise referral and access to appropriate services. With this in mind, a multi-disciplinary group, involving members of the focus group worked together to develop a Health Intervention Alert and Risk Assessment Tool.
During a pilot phase, all clients presenting to one of Plymouth’s homeless hostels are being assessed against the colour coded matrix. After identification of a care co-ordinator, a plan is instigated according to the colour code: red indicating urgent need (probably in last months of life); amber indicating intermediate need (probably in last 6 – 12 months of life) and purple indicating a need to monitor (probably in last 12 – 24 months of life).
Assessment of an individual as ‘in urgent need’ will trigger referral to the specialist palliative care team, application for healthcare funding, involvement of end of life support care workers in the hostel and liaison with GP and hepatology services (if the latter is still involved). Conversations with the individual about their possible prognosis and their wishes and options are fundamental, whatever the evaluation of need.
Early evaluation suggests that staff find the tool useable. A care co-ordinator has so far been allocated for 100% of those assessed, who are also reviewed at monthly drop in clinics run by Gilly and Dr Jameson, allowing a picture of individual need to build.
Plans are underway to roll out use of the assessment tool across Plymouth in settings such as hepatology departments, GP surgeries and drug and alcohol teams and to bid for funding to allow for a more robust evaluation to be undertaken. Gilly and the St Luke’s education team are also planning further education programmes to consolidate the End of Life ambassador network across the city as part of a Compassionate City initiative. Gilly and Sean have also recently contributed to a soon to be published Hospice UK report focusing on the end of life care needs of the homeless.
The importance of person-centred end of life care, supporting individual dignity and choice regardless of the person’s social situation or location, has been at the core of policy for the last decade (DOH 2008). Gilly describes the work she is doing alongside her colleagues at St Luke’s, the professional multi-disciplinary team and the army of volunteers supporting homeless people across Plymouth as ‘small steps’. However, they are very significant ones in recognising the needs of this vulnerable and previously neglected group of people at the end of their lives.
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Shulman, C., Hudson, B., Low, J et al. (2018). End of life care for homeless people. Palliative Medicine. Vol 32, (1) pp 36 – 45. Available online at: https://www.ncbi.nlm.nih.gov/pubmed/28672115
Webb, W., Mitchell, T., Nytanga, B et al. (2018). Nursing management of people experiencing homelessness at the end of life. Nursing Standard. Vol 32, no 27, pp 53 – 62