Homelessness and end of life care
People who are homeless often face severe health problems and early deaths – on average 30 years younger than people who are housed. Deaths are often not predicted, not planned for, and perceived as unexpected and unanticipated. As a result they are often crisis led and occur in hospital. Advance planning and the involvement of palliative care services is rare.
Pathway, in collaboration with St Mungo’s, Marie Curie, University College London and Coordinate My Care published research to explore the challenges for people who are homeless with deteriorating health. The research was led by
- Dr Caroline Shulman, a homelessness GP and researcher
- Dr Briony Hudson, a health psychologist and researcher
- Julian Daley, a Care Navigator for homeless health charity Pathway. Julian was homeless for many years, but now supports homeless people in hospital.
The research team spoke to 127 people, including people with experience of homelessness, doctors, nurses, healthcare providers, and workers in hostels and day centres. All professionals had experience of supporting homeless people with advanced ill health. The researchers uncovered clinical and social complexities and many challenges to providing care for homeless people towards the end of life.
“It was really important that we talked to everyone about this. Not just doctors and nurses and people working in hostels, but to people who’ve lived on the streets and in hostels, who know what it’s really like.”
Julian, Care Navigator and homelessness expert by experience
Links to published research papers can be found at the bottom of this page.
The research highlights inequalities in palliative care and the growing concern that many people who are homeless are dying in unsupported, unacceptable situations. Key barriers to high quality care and support at the end of life for homeless people included:
Lack of choices and services
Many traditional sources of palliative care, such as hospices and care homes, struggle to support people with complex needs at a young age, especially if the person has addictions or behavioural problems (commonly as a result of adverse child experiences). Hostels are often left to support people who are seriously ill.
Hostel workers are trained to help people move out of homelessness and engage with health, drug and alcohol services and preparation for employment. It is not their role to provide the intimate personal care that many seriously ill people require, such as washing and dressing or dispensing medicines. However, at the moment many hostel staff are having to support people with high needs, without adequate support from health and social services.
Predicting who may die
It is not always easy to determine if, or when, someone is approaching the end of their life. The trajectory of many chronic illnesses affecting people who are homeless (e.g. liver disease) can be influenced by substance use or not engaging with health care services. Many homeless people may benefit from palliative care, but currently this is often not considered or implemented.
All professional groups who took part in the research found it difficult to talk about death and future care preferences with people who were homeless. This was partly because many of the patients involved were young. Professionals also feared upsetting people who were already vulnerable. They worried that people might lose hope of recovery or feel that workers had given up on them. They were also concerned that discussing death could increase drug or alcohol use, if people turned to them to cope.
It is essential that this situation changes. Drawing upon the expertise of the people they interviewed, the researchers made three key recommendations that could help services better support homeless people with advanced ill health.
Recommendation: Parallel planning, hope for the best, but plan for the worst
In dealing with uncertainty, researchers recommend that when people are concerned about someone’s health, this could be considered an entry point to begin thinking and talking about future options and wishes.
Exploration of a person’s insights around their health and illness, what might help them feel better now, and what they might like for the future, may mean people could be supported in more person-centred ways. Palliative care services are experienced in having these conversations and can be very supportive.
Involving palliative care does not mean active treatments and recovery focused options have to stop. A parallel planning approach means that multiple future courses are considered, taking into account different things that might happen. Talking about options means people have the chance to discuss what is important to them, how they can be supported to live well and what they would like to happen if they became very unwell.
Recommendation: Work together, multi-agency meetings to support care planning
As professionals, palliative care for people who are homeless is everyone’s job. We need to work together to provide responsive, person centred care towards the end of life.
One way of achieving this is establishing regular review meetings to discuss people that you might be concerned about. The meetings could be attended by representatives from a range of services as well as the person’s key worker.
Within these meetings ways to support the person in line with their wishes could be discussed, leading to shared understanding and realistic parallel plans.
Recommendation: Reach out, increase in-reach into hostels and day centres
Many homeless people with advanced ill health remain in hostels. Until alternative places of care are available, greater in-reach into hostels from health and social care services is needed to support both hostel staff and residents. In reach into hostels could help with:
- Identifying people whose health is a concern
- Having conversations with residents about health, not just issues for the very end of life, but about living well
- Supporting the development of care plans
- Optimising pain relief and other symptom control
- Increasing access to social services package of care and NHS Continuing health care funding
- Training for front line staff
- Bereavement support for staff and residents
Recommendation: need for greater provision, access and choice
There remains a need for a range of options including a bespoke service providing 24 hour support for people who are homeless and dealing with serious health problems.
Getting involved – resources that may help
In collaboration with Marie Curie Palliative Care Research Department at UCL, and St Mungo’s, the researchers have produced a toolkit to help frontline staff identify and communicate with people they are concerned about and access support from other services . This has also been found to be useful for health and social care providers.
The toolkit is free to access and can be found at: https://www.homelesspalliativecare.com/
If you are a clinician or palliative care practitioner interested in supporting your local homeless services, you can find out what services are available in your borough by visiting www.homeless.org.uk or https://lhf.org.uk/atlas/
Watch the short film at the top of the page about the experience of being ill in a hostel.
There are great examples of collaboration between hospices and hostels. For more information see this detailed CQC report. https://www.cqc.org.uk/news/stories/second-class-ending-end-life-care-people-who-are-homeless
Publications from this work
You can find a range of research papers into end of life care, and homelessness and respite care on the Pathway and Faculty publications pages.
Key publications resulting from the research are also listed below.
Hudson BF, Flemming K, Shulman C, Candy B. Challenges to access and provision of palliative care for people who are homeless: a systematic review of qualitative research. BMC Palliative Care. 2016;15(1):96
Shulman, C., Hudson B.F., Low, J., Hewett, N., Daley, J., Kennedy P et al. (2017) End of Life care for homeless people: a qualitative analysis exploring the challenges to access and provision of palliative care. Palliative Medicine. 0 (0):02692163177101
Hudson BF, Shulman C, Low J, et al Challenges to discussing palliative care with people experiencing homelessness: a qualitative study BMJ Open 2017;7:e017502. doi: 10.1136/bmjopen-2017-017502
Shulman, C., Hudson, B.F, Brophy, N., Kennedy, N., & Stone, P (2018). Evaluation of training on palliative care for staff working within a homeless. Nurse Education Today Sep 29;71:135-144. doi: 10.1016/j.nedt.2018.09.022.
NHS England End of life care Webinar: Palliative care toolkit for people experiencing homelessness – https://www.england.nhs.uk/eolc/resources/
This webinar provides an overview of the complexity of the needs of people experiencing homelessness as well as the health impact. Findings from work which looks at complexities and gaps in provision are shared, the toolkit developed (to overcome challenges) is then explained.