Palliative Care specialists bring support to hostels in new pilot project, helping staff to better assist patient choice in end-of-life care.
The majority of deaths among people experiencing homelessness occur with little or no palliative care support. It often falls to frontline homeless hostel staff, who are not health or social care professionals, to support people with very complex needs who are extremely sick. People living in hostels are often referred to hospital rather than asked about their preferred place of care. This project has enabled hostels to better facilitate greater patient choice.
In the first undertaking of its kind, researchers at the Marie Curie Palliative Care department at UCL (University College London) and the homelessness charity Pathway, partnered four homeless hostels in London with palliative care specialists from St Christopher’s and St Joseph’s Hospices.
The palliative care specialists were trained in some of the unique complex issues affecting people experiencing homelessness to become homelessness champions. These champions then attended the hostels for a couple of days a month to provide support for staff and residents in facilitating access to palliative care and other key services for people with deteriorating health.
The Marie Curie Palliative Care UCL researchers provided in-reach support by helping hostel staff to:
- identify palliative care needs
- refer patients to dedicated palliative care teams and one-to-one health care provision
- refer patients to other care professionals
- provide specialist care equipment
- advocate for social care
- refer to high support nursing homes when necessary
“I’ve seen so many people die, so much of it over the last 19 years. We have been working in isolation for such a long time and people don’t really know how hard it is to work here.”Hostel staff
At the beginning of the project, the champions underestimated the needs of people living in the hostels and were shocked by residents’ lack of access to care.
One of the champions from St Christopher’s reflected:
“I felt confusion when I first went in. I was shocked at the high level of need at the hostel and how much the staff in the hostel were expected to do. There were residents with physical care needs, emotional care needs, mental health needs, financial needs, needing a collective cross agency approach but hostel staff were left to do it. I couldn’t get my head around it as it’s not a residential home it’s not a care provider, it’s a homeless hostel.”
Some hostel workers were initially sceptical about the potential benefits of the partnership with the hospice.
A Service Manager from one of the hostels said:
“I had pre-judgements about us allowing people to die within the service, as I was concerned about the impact it would have on staff. Now, I can’t see our homelessness champions not being part of our support network. We’ve gained so much knowledge and confidence, particularly in practical tools that we now regularly implement, such as monitoring our residents’ health and recording information. What we have learnt during the partnership is vital to the work that we do and the training we received has been invaluable.”
This project has demonstrated how supportive this partnership has been for hostel staff and how isolated they had previously been when supporting residents with complex needs and advanced ill health. The collaboration has helped develop a person-centred approach to care and a recognition of when more health or social care input is needed. Hostel staff have been empowered by support from the champions. This has increased their knowledge and understanding about health and social care issues and rights, and has enabled them to advocate more effectively for what residents need.
Briony Hudson, Senior Research Manager at Marie Curie, said:
“This research demonstrates one model of how palliative care professionals can support people experiencing homelessness in their local area by providing in-reach support to both staff and residents. By becoming a familiar face within the hostel, opportunities for engagement and developing the trusting relationships that are so important when supporting people who have experienced exclusion emerge. What was clear from this research is that supporting people with complex needs is not just a role for palliative care, but requires input from a range of professionals and services to truly be able to offer person centred care and support for people towards the end of their lives”.
Caroline Shulman, General Practitioner in Homeless and Inclusion Health, Pathway research fellow and Honorary Senior Lecturer at UCL, said:
“People residing in UK homeless hostels experience extremely high rates of ill health, with multiple complex needs, frailty and age-related conditions at a young age. However, they seldom receive palliative care with the burden of support often falling to hostel staff. This was why it was crucial we carried out this project, to try and get support for hostel staff and for residents with complex or advanced ill health. We are delighted with how input from the palliative care specialists from St Christopher’s and St Joseph’s hospices have enabled residents to receive a more person-centred approach to their care. Building on experience from the Covid-19 pandemic, we are now exploring how we can extend and enhance this work to include a remote platform for sharing learning, within a multi-professional group, to improve support for this marginalised group.”
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NOTES TO EDITORS
Homeless people die on average 30 years younger than people who are housed. In 2019, the Office for National Statistics (ONS) reported that 778 people who were street homeless or in emergency shelters died in England and Wales with the mean age of death being 45.9 for men and 43.4 for women. This is more than 30 years younger than the general population.
While this project represents promising first steps in reducing inequity in palliative care access for people experiencing homelessness, there is a need for this marginalised group to have real and meaningful choice over the care they receive and where they receive it.
The research paper is now available to view on SAGE Journals here. The Oak Foundation funded this research.
For further information contact:
Dr Caroline Shulman, General Practitioner in Homeless and Inclusion Health, firstname.lastname@example.org
Dr Briony Hudson, Senior Research Manager, Briony.Hudson@mariecurie.org.uk
Pathway is the UK’s leading homeless healthcare charity. Pathway works to improve the quality of healthcare homeless and excluded groups receive by developing and sharing best models of care like the Pathway hospital teams; increasing specialist skills of workers in healthcare; influencing policy; and reducing stigma in healthcare against people experiencing multiple exclusion.
The Marie Curie Palliative Care department at UCL works to develop and evaluate new ways of improving the care of people with terminal illnesses.
The Oak Foundation commits its resources to address issues of global, social and environmental concern, particularly those that have a major impact on the lives of the disadvantaged. With offices in Europe, India and North America, they make grants to organisations in approximately 40 countries worldwide.