Palliative care, homelessness, and restricted or uncertain immigration status

• Published in: Palliative care and social practice Vol. 17; p. 26323524231216993
• Main Authors: Hudson, Briony F., Dzeng, Elizabeth, Burnett, Angela, Yeung, Michelle, Shulman, Caroline
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01-01-2023; Sage Publications Ltd; SAGE Publishing
• Subjects: Focus groups; Homeless people; Immigration policy; Original Research; Palliative care; United Kingdom > UK; survey; hospices; homelessness; qualitative; palliative care
• ISSN: 2632-3524; 2632-3524
• DOI: 10.1177/26323524231216993

Background:
People experiencing homelessness have limited access to palliative care support despite high levels of ill health and premature mortality. Most research exploring these challenges in the United Kingdom has focused on people living in hostels or temporary accommodation. People with uncertain or restricted immigration status are often unable to access this accommodation due to lack of entitlement to benefits. There is little research about the experiences of those in the United Kingdom who cannot access hostels or temporary accommodation due to restricted or uncertain immigration status with regards to palliative and end-of-life care access.
Aim:
To explore the barriers to palliative and end-of-life care access for people with uncertain or restricted immigration status, who are experiencing homelessness and have advanced ill health, and the experiences of UK hospices of supporting people in this situation.
Design:
A multi-method cross-sectional study.
Setting/participants:
An online survey for hospice staff followed by online focus groups with staff from inclusion health, homelessness and palliative care services, charities and interviews with people experiencing homelessness.
Results:
Fifty hospice staff responded to the online survey and 17 people participated in focus groups and interviews (focus groups: n = 10; interviews: n = 7). The survey demonstrated how hospices are not currently supporting many people with restricted or uncertain immigration status who are homeless and that hospice staff have received limited training around eligibility for entitlements or National Health Service (NHS) care. Interview and focus group data demonstrated high levels of unmet need. Reasons for this included a lack of consistency around eligibility for support from local authorities, issues relating to NHS charging, and mistrust and limited knowledge of the UK health and social care system. These barriers leave many people unable to access care toward the end of their lives.
Conclusion:
To advocate for and provide compassionate palliative and end-of-life care for people with uncertain immigration status, there is need for more legal literacy, with training around people’s entitlement to care and support, as well as easier access to specialist legal advice.
Plain language summary
Palliative care, homelessness and restricted or uncertain immigration status
Most research from the UK about access to support at the end of life for people who are homeless has looked at the experiences of people who are staying in hostels or temporary accommodation. People that are not UK nationals are not entitled to the benefit which pays for hostel or temporary accommodation. There is a group of people in the UK who are very unwell, who are homeless and are not able to access hostel accommodation due to their immigration status. This project explored the experiences of this group around access to palliative care. We spoke to professionals from health and social care services, charities and local councils and people who are in this situation themselves. Hospice staff were also surveyed to see if they had experience of supporting people in this situation. The survey showed that hospices are not currently supporting many people with restricted or uncertain immigration status who are homeless, and that they have limited training around supporting people in this situation. In the interviews and focus groups, opinions were heard about challenges to palliative care support for people with uncertain or restricted immigration status who were experiencing homelessness. Professionals described how it can be hard to obtain support from local authorities, and also understanding rules about who has to pay to receive NHS care. People with uncertain or restricted immigration status who were also homeless did not always know how to access the UK health and social care system and had negative experiences of doing so in the past. As a result, many people are unable to access care towards the end of their lives. To provide compassionate palliative and end-of-life care for people with uncertain immigration status, there is need for more legal literacy, with training around people’s entitlement to care and support, as well as easier access to specialist legal advice.