Continuing our new series is about palliative care in the context of being ‘homeless’ which may include sleeping on the streets, living in a hostel or ‘sofa surfing’. In the coming weeks, we look at the implications of providing palliative care and bereavement care for people who are homeless and how the hospice and palliative care community can offer appropriate support.
Niamh Brophy is Palliative Care Coordinator of St Mungo’s, a UK charity that provides accommodation and support to people experiencing homelessness in London and the South of England. Here, Niamh explains the challenges that face homeless people and how St Mungo’s is working through health, housing, social care and drug and alcohol services to improve access and quality of care to one of the most vulnerable and marginalised groups in our society.
Sadly, homelessness is on the rise in the UK. (1) The numbers of deaths of homeless people sleeping rough on the streets or in temporary accommodation has also risen sharply in recent years. (2) This leads one to ask the question, how are these people dying, and what does palliative care for the homeless look like?
The answer to this question is complex. Access to palliative care for many vulnerable groups is inequitable, with traditional models of care struggling to meet the needs of those who are not in the mainstream. Homelessness is a stark example of this. For this group, and those supporting them, access to care and support as one’s health deteriorates remains poor. Deaths are often found to be undignified, sudden but not unexpected, and with little or no opportunity given to advance care planning. (3)
“I’ve lost on the way to this journey, I’ve lost the special thing that most of us want … Dignity.” Hostel Resident with terminal illness
Such inequalities have been recognised for many years, and led to the development of the St Mungo’s Palliative Care Service in 2008. As Palliative Care Coordinator I have experienced these challenges and inequalities first hand while supporting clients with an advanced illness.
In many cases clients face deteriorating health due to advanced liver disease, the most common cause of death amongst our residents. These illnesses are often compounded by other co-morbidities, with substance use adding an extra layer of complexity.
As a result, mainstream care services struggle to meet the needs of these individuals, with age and substance use issues often leading to exclusion from services. A lack of alternative options for people with such complex needs means individuals often remain in hostels or temporary accommodation until they die, simply because there is nowhere more suitable for them to go. Where they may meet the criteria for residential care or nursing care services, because of their young age, substance use issues or perceived challenging behaviour, they are often excluded.
Recent research affirmed these experiences, highlighting the challenges in accessing specialist care and the lack of options for those who are insecurely housed (4). Common themes emerged reflecting individual, practical and systemic issues that need to be acknowledged and addressed for care to be improved.
At St Mungo’s we aim to support clients to make informed choices about their care. We support staff and other clients affected by the practical, psychological and emotional aspects of approaching the end of life on the street or in a hostel environment. We also train staff to feel more confident in dealing with end-of-life issues including identifying when a client may be dying, having conversations about end of life and bereavement support.
“It’s difficult when someone is dying in such a sad situation – no family, no support, feeling alienated from services. They’ve only got us you know, and we aren’t medically trained. Who is out there that can help us?” Hostel staff.
In the absence of specialist services, we have fostered a multidisciplinary approach to care involving health, housing, social care and drug and alcohol services. This way of working has improved client outcomes by enabling coordinated, realistic, flexible and creative support that clients can relate to. It has also had a significant impact on hostel staff by reducing stress through sharing responsibility for management of risk and concerns, and improving access to advance care planning so clients’ wishes can be respected.
Over the years, we have collaborated with Marie Curie on a resource pack for frontline homeless sector staff and Dying Matters to publish guidance on supporting advance care planning conversations with those experiencing homelessness. This year, we developed a new online toolkit for staff and health professionals working with people who are homeless and require palliative care.
With homelessness rising, and the health needs of individuals experiencing homelessness becoming more complex, we must continue to develop and test interventions and models of care that promote choice, respect and dignity. I hope to see continued discussion about how best to improve access and quality of care to one of the most vulnerable and marginalised groups in our society.
- Ministry for Housing, Rough Sleeping Statistics Autumn 2017, England. Download the PDF of this document.
- Greenfield P, Marsh S. Deaths of UK homeless people more than double in five years, The Guardian, 11 April 2018.
- Thomas, Bethan (2012) Homelessness Kills. Crisis Report.
- Shulman C, Hudson BF, Low J, Hewett N, Daley J, Davis S, et al. End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care. Palliative Medicine. 2018 Jan; 32 (1): pp.36–45. Published online 2017, July 3. doi.[10.1177/0269216317717101]
- Contact Niamh Brophy by email.
- Read personal stories from staff and clients on St Mungo’s blog.
- Download a copy of the Homelessness And End Of Life Care Resource Pack for staff working with people who are homeless.
- Download a copy of the Dying Matters resources for homeless people.
Look out for more posts on the EAPC blog about Palliative Care and Homelessness. You can read an earlier post by Professor Kelli Stajduhar about a new study in Canada and next week Anna Felber will tell us about VinziDorf-Hospice in Austria.