Palliative care for people experiencing homelessness
Homeless people encounter barriers in accessing health care services, experience poor health outcomes and early mortality. The mean age of death among single homeless people is in their 40's with recent evidence that all-cause standardised mortality rates among people with extreme social exclusion (homeless, sex working, substance misuse disorder or prisoners) were significantly increased at 7·9 in male individuals and 11·9 in female individuals
"Homelessness" includes people sleeping on the streets (rough sleeping) and in insecure or temporary accommodation, including hostels, squatting and sofa surfing. In 2017-2018, 8,108 people were identified sleeping on the streets (sleeping rough) in London. This is more than double the number in 2010.
This area of research is now in its second phase.
During the first phase, we explored the growing concern that many homeless people are dying in unsupported, unacceptable situations. This qualitative research was undertaken in 3 boroughs in London. From this work we have provided recommendations regarding how to improve access to palliative care for this group.
We have now moved into the second action research phase of this work, piloting an intervention bringing palliative care staff into homeless hostels and day centres.
Phase one of this research project included
- A systematic review
- A large qualitative study exploring barriers in providing palliative care and challenges to discussing palliative care with people who are homeless
- Development and evaluation of training for hostel staff informed by the research
- Creation of an online training resource for frontline homelessness staff
- Development of a short film outlining some of the challenges experienced by people who are homeless with advanced ill health, and recommendations for improving access to care for this
Key findings of Phase One
- There are complexities around identifying who is palliative as many people who are sick with deteriorating health and at high risk of dying have illness such as advanced liver disease, with often uncertain illness trajectories
- There is a lack of appropriate places of care for people who are homeless with high care and support needs, particularly if this is in combination with substance misuse and/or mental health difficulties or when ill at a young age.
- Due to the lack of alternatives, homeless people with advanced ill-health often remain in hostels. Hostel staff are not trained to support people who are unwell, and currently receive little support.
- There is often a conflict between the 'recovery' focused nature of many services such as hostels (ie their aim being to support people to move out of homelessness and out of addiction), and the realities of health and illness for homeless people.
- Conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Challenges to such conversations included; attitudes to death, the recovery focused nature of services; uncertainty regarding prognosis; lack of options regarding place of care; denial and fear of negative impact on people who are already very fragile and vulnerable.
- Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.
Phase two of this research project
Our current project aims to develop, pilot and roll out a sustainable model for embedding multidisciplinary, person centred care and support for sick homeless people by bringing together palliative care and multidisciplinary support into homeless hostels and day centres.
Evidence of impact
Invited oral presentations at over 35 national conferences (palliative care, public health, drug and alcohol and homelessness).
Supported MP Sir Ed Davey developing his proposed Homelessness (End of Life Care) Bill
NHS England Webinars:
· Homeless Palliative Care Toolkit webinar
Research team for Current Phase:
|Dr Caroline Shulman||Principle Investigator - GP in homeless and inclusion health, Kings Health Partners and Pathway, Honorary senior lecturer, Marie Curie Palliative Care Research Department, Division of Psychiatry UCL|
|Dr Megan Armstrong||Research associate, Pathway and Marie Curie Palliative Care Research Department, Division of Psychiatry UCL|
|Niamh Brophy||Palliative care coordinator, St Mungo's|
|Julian Daley||Expert by Experience and Care Navigator, Pathway|
|Dr Nigel Hewett||Medical director, Pathway, Secretary to the Faculty of Homeless and Inclusion Health|
|Dr Briony Hudson||Research associate, Pathway and Marie Curie Palliative Care Research Department, Division of Psychiatry UCL|
|Peter Kennedy||Former palliative care coordinator, St Mungo's|
|Professor Paddy Stone||Marie Curie Chair in Palliative and End of Life care, Marie Curie Palliative Care Research Department, Division of Psychiatry UCL|