Caring for homeless people at the end of life
Please be aware - this information is for healthcare professionals
Homeless people may have specific issues and needs that make accessing end-of-life care difficult for them. These things can also make it challenging for health and social care professionals to plan and deliver end-of-life care. By understanding some of the issues homeless people may have, you'll be able to support them better in their last months, weeks and days.
What is homelessness?
A homeless person is anyone who doesn’t have anywhere to live, who doesn’t have a legal right to stay where they live, or whose accommodation is unsuitable to live in. This includes people who are:
- staying with friends or relatives on a temporary basis, sometimes called sofa surfing
- staying in temporary accommodation, such as hostels, shelters, refuges, or B&Bs
- living in insecure housing, such as squats
- in and out of accommodation because it’s an unsuitable environment – for example, there are too many people living in one space or it’s an abusive environment
- living and sleeping on the streets
- voluntarily homeless when they have chosen to live on the streets.
What causes homelessness?
People are homeless for many reasons which are often complicated.
Common reasons homeless people give include:
- not being able to live with relatives or friends anymore
- having a relationship breakdown or bereavement
- not being able to afford accommodation.
There are sometimes individual reasons for homelessness, such as:
- physical health issues
- mental health issues
- financial issues
- alcohol or drug issues
- family problems.
There may also be structural social or economic issues, such as:
- lack of welfare or income support
- lack of housing.
What are the key things to consider when delivering end-of-life care for homeless people?
Complicated health conditions
Homeless people often have more health problems and poorer health outcomes than the general population. They often have less healthy lifestyles than the general population; many have drug or alcohol addictions, and most smoke.
Homeless people have a higher risk of chronic illnesses, such as heart and liver disease, diabetes and cancer. And they have a higher risk of infections, such as tuberculosis (TB), HIV, and hepatitis. Many also have mental health issues.
Some homeless people have drug or alcohol addictions, which can make other health issues worse. Having physical health issues, mental health issues and drug or alcohol addiction is sometimes called a tri-morbidity. This can make planning treatment and care difficult.
The average age of death for homeless people is 47 years old, compared to 77 years old for the general population. These figures are from the records of deaths in England between 2001 and 2009.
Key causes of death for homeless people include:
- drug-related issues
- cardiovascular disease
- alcohol-related issues
- other diseases and disorders
- respiratory illness
- suicide or undetermined intent (when it’s not clear if the cause of death was self-harm, an accident or an assault).
Drug and alcohol abuse cause more than one in three deaths among homeless people.
Homeless people are more likely to experience barriers in accessing healthcare services in general.
They may be worried about how they will be treated. This can be because they don’t trust health professionals and they think they will be discriminated against. Homeless people might have had previous negative experiences when accessing services. Some homeless people find it hard to balance their healthcare needs with other practical or social needs. For example, regularly negotiating somewhere to live, managing finances or managing challenging personal relationships.
There may be practical barriers for homeless people accessing healthcare services, such as difficulty registering with a GP or problems getting and keeping appointments. Some GP practices ask for proof of address and personal identification to register someone with the GP practice. However, NHS England's Patient Registration guidelines for GPs state that people do not need proof of address or personal identification to register with a GP or get an appointment.
Some homeless people have low literacy levels or learning disabilities, which can make it difficult to fill in forms and understand written information. All organisations that provide NHS or adult social care must follow the accessible information standard by law. This means that they must make sure that people who have a disability, impairment or sensory loss get information that they can access and understand, and any communication support that they need.
These barriers often mean that homeless people do not access primary care, and so their health conditions are not well managed. As a result, their care is often crisis led, with homeless people more likely than others to use accident and emergency (A&E) departments and to have emergency admissions to hospital.
Access to end-of-life care
There is evidence that homeless people are interested in accessing end-of-life care services. However, the barriers in accessing general healthcare services stop them from accessing end-of-life care as well.
Healthcare professionals can find it difficult to know when a homeless person needs end-of-life care. This can be because homeless people:
- have complex health needs
- might have conditions with uncertain prognosis, such as drug or alcohol-related liver disease
- may have less interaction with healthcare professionals, especially in primary care
- on average die younger than most people who are referred for end-of-life care.
Because of these factors, advance care planning rarely occurs with homeless people.
Patient concerns about death and dying
Some homeless people have distinct concerns and needs around death and dying. These include being afraid of dying anonymously, separation from family or friends, substance abuse issues, and lack of finances.
Care in hospitals or hospices
Homeless people can find it difficult to stay in a hospital or hospice. They might feel that they are being judged for their lifestyle or feel ashamed. They may also be uncomfortable with the clinical atmosphere or medical environment, and not know what is expected of them in this environment. Homeless people might display challenging or aggressive behaviour, need to smoke, or have drug or alcohol addictions.
Because of these challenges, hospital or hospice staff may find it difficult to care for homeless people. Working in partnership with local substance misuse services can be helpful, as these services can provide support to people who are homeless and to hospice or hospital staff.
Homeless people are more likely to discharge themselves (self-discharge) from hospital before their care is complete. This might be because they are uncomfortable with the environment. For some homeless people, this is so that they can access alcohol or drugs to avoid going into withdrawal while on a ward. Unplanned discharges can cause communication issues between the hospital and community-based health and social care professionals. Having multidisciplinary meetings can help to address the issue of self-discharge. Volunteers with experience of homelessness (peer advocates) might be able to help homeless people cope with a change of environment.
Care at ‘home’
Homeless people often remain in hostels or temporary accommodation as their health gets worse, with little or no input from specialist health teams. They may live in a communal setting, such as a hostel. For healthcare professionals, this can cause issues such as getting access to their home, privacy, safe storage of medicines, and safety of bed-bound patients. Providing end-of-life care can also impact on hostel staff or other residents.
Homeless people are less likely to have support from family members or friends. This means that they are less likely to have people to advocate for them or manage their practical, financial, physical and emotional needs.
Drug or alcohol addiction
Many people who are homeless have alcohol or drug addictions. This can make it difficult to manage their care. For example, they might not be able to stay in a hospital or hospice if they are drinking or taking illegal drugs.
People who are drug users or have been addicted to drugs in the past may have complicated pain relief needs and concerns. Planning pain management must be done carefully and in advance.
How can I support a homeless person who needs end-of-life care?
Be aware of the issues homeless people may have. These issues can make accessing end-of-life care, and having a good death, very difficult for homeless people. It can also make care planning challenging for health and social care professionals. Involving keyworkers or other people who the patient trusts can help you provide person-centred care in line with their wishes.
Consider the patient’s individual circumstances. When planning your patient’s care, think about their living situation, social support network, contact with community services, psychosocial needs, any history of substance abuse, and barriers to accessing care.
Support people registering for a GP. You can help your patient get access to primary care services and help them fill in a form if needed. If it’s not appropriate for you to do this yourself, you could suggest a peer advocate helps.
Take a multidisciplinary approach and involve staff in the community. Include health and social care services when planning care. You could contact community staff to make sure you give consistent care and are able to notice any changes or issues. This could include staff in hostels, day centres, refuges, and homeless teams in hospitals.
You could attend or organise case reviews with community staff for patients whose care is complicated. This would allow you to plan care, be aware of challenges, and avoid crisis admissions to hospital.
Training with local partners. Use the skills and knowledge of different sectors to help you support your patients. If you are a trained specialist, you could offer training on end-of-life care to homeless service staff, or ask them to train you on the challenges in caring for homeless people. You could also offer bereavement support to people affected by death, such as hostel residents and staff. This can help you build relationships and raise awareness about the services you can provide.
Plan early interventions. It’s difficult to know when a homeless person needs end-of-life care. So it can help to start planning care earlier, rather than waiting until you think they are dying. You could refer someone to palliative care or end-of-life care services when you’re concerned that their health is getting worse.
Start conversations about future care earlier. Advance care planning rarely occurs for homeless people. You could try to start conversations earlier, with a focus on general health and choices for the future, and not just end-of-life issues. This could be done for particular patients or by attending team meetings at local homeless services to find out which patient’s health might be deteriorating.
Support the people helping your patient. Offer support to family, friends, or staff who may be able to help the patient to get access to care. If the patient wants to find family they have been separated from, they could access the Salvation Army’s family tracing service.
Look into peer advocacy services. Some organisation link homeless people with volunteers who have experience of homelessness (peers). Peers can help homeless people build the skills and confidence to access health services. In London, Groundswell supports homeless people with a Peer Advocacy service.
Find out more. St Mungo’s and Marie Curie have developed a Resource Pack with practical tools and templates for supporting homeless people in end-of-life care. The Queen’s Nursing Institute has produced a Homeless Health Assessment Tool to help nurses make an accurate and holistic assessment of the health of homeless people.
Is there more support available?
Support for patients
- Crisis provides a list of organisations which can help with housing.
- Groundswell supports homeless people in London with a Peer Advocacy service.
- Homeless Link has a database of homeless services in the UK.
- Pathway has 11 homelessness teams in hospitals. And they host a network of health and social care professionals providing support for homeless people.
- Shelter’s Advice finder can help you find local homelessness advice services.
- Streetlink connects rough sleepers to local support. A homeless person can contact them directly or someone can contact Streetlink on their behalf.
Support for staff
- Frontline Network provides support and resources for frontline staff supporting people affected by homelessness.
- Housing Justice provides training for people working with homeless people about homelessness and advocacy for homeless people.
- The Faculty for Homeless Health and Inclusion is an inclusive membership organisation for people involved in delivering healthcare for excluded groups, including homeless people.
- The Queens Nursing Institute has a homelessness project which provides support for nurses working with people who are homeless.
Points to remember
- Homeless people aren’t just people who are living or sleeping on the streets.
- There are lots of barriers for homeless people in accessing health and social care services, including end-of-life care.
- Planning and delivering end-of-life care for homeless people can be challenging. Get support from health and social care colleagues and consider the patient’s individual circumstances.
- Build your knowledge about services for homeless people in your area.
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