Providing care and dignity in dying to the homeless community
UCL research has highlighted the lack of care for homeless people who are approaching the end of their lives, leading to new national policy emphasising compassion, choice and dignity.
28 April 2022
Most people experiencing homelessness remain in hostels or temporary accommodation even when they are dying, due to a lack of an alternative place of care. Barriers to mainstream services include ongoing addictions, mental health difficulties and the comparatively young age of many of those who need palliative support.
Research undertaken at the Marie Curie Palliative Care Research Department at UCL highlighted the unmet needs of people approaching the end of their lives while experiencing homelessness, and the lack of support for the frontline homelessness staff who are often left to support them.
The view from London and worldwide
The team, including Drs Caroline Shulman, Briony Hudson, Megan Armstrong and Professor Paddy Stone, carried out a large qualitative study exploring palliative care access for people who are homeless or vulnerably housed in London and a systematic review of international qualitative literature. The research identified the specific factors that made the provision of palliative care particularly challenging in the context of homelessness, including their additional needs such as mental health and addictions and the difficulty in predicting the trajectory of their condition.
By studying the aging of a population in a homeless hostel in London, the team together with a geriatrician, Dr Rafi Rogans-Watson, revealed massive early ageing and frailty in the homeless population. Although the average age of residents was 55 their frailty scores were equivalent to people in their late 80s. On average, individuals had seven medical conditions, higher than any other sector of the UK population. The UCL team also found that few hostels had visits from health and social care providers, leaving hostel staff to support extremely vulnerable and sick people at the end of their life.
Towards a new model for end-of-life care
The team made several recommendations for change, and with support from Pathway, St Mungo’s and Marie Curie, went on to develop and evaluate a training programme and online toolkit for hostel staff. More than 4,000 frontline and policy staff and commissioners of services have subsequently received training based on UCL research and at least 5,000 more professionals are accessing the learning through the online homeless palliative care toolkit. The team also developed a successful model for connecting palliative care teams with homeless hostels.
The findings from this research are informing changes to national NHS policy around access to palliative care for homeless people, led by the National Clinical Director for Palliative Care at NHS England. The UCL team co-authored the Care Quality Commission’s (CQC) November 2017 report on end-of-life care for homeless people, the first time a separate report has been written about the needs of this particular vulnerable group. The research has also been central to the homelessness section of Hospice UK’s seminal report ‘Care Committed to Me’ published in 2018 for commissioners, health care and service providers.
During the COVID-19 pandemic, Dr Shulman supported the Healthy London Partnership’s pan-London COVID response (involving some 7,000 homeless people). She advised London’s Homeless Health Integrated Systems Partnership and the Rough Sleeping Strategy Group and supporting the development of clinical protocols and referral pathways.
Improving the quality and co-ordination of palliative care for people experiencing homelessness
Research at UCL has highlighted the UK’s failure to provide care and dignity in dying to the homeless community.
The recommendations and outputs from the UCL team have been adopted into policy and practice at a national level. As a result, support towards the end of life for people experiencing homelessness has been reframed and enhanced with an emphasis on compassion, choice and dignity.
- Dr Caroline Shulman’s academic profile
- Dr Megan Armstrong’s academic profile
- Professor Paddy Stone’s academic profile
- UCL Division of Psychiatry
- UCL Marie Curie Palliative Care Research Department
- UCL Faculty of Brain Sciences
- UCL Faculty of Brain Sciences - REF 2021
- Improving the quality and co-ordination of palliative care for people experiencing homelessness video
- Image credit: istock / kieferpix