Caring for people experiencing homelessness in palliative care

Accessing palliative and end of life care can be particularly difficult for people experiencing homelessness. So, it's important for health and social care professionals to know about the type of issues and barriers to care that may affect someone experiencing homelessness. This can help you to provide person-centred care and build links with community services.

What do we mean by homelessness?

Homelessness does not just refer to people living on the street. It also refers to people who have nowhere permanent or stable they can call a home. This includes people who are:

• staying with friends or relatives on a temporary basis (sometimes called sofa-surfing)
• insecurely or vulnerably housed or in temporary accommodation, such as hostels, shelters, women's refuges, B&Bs or squatting.

People experiencing homelessness can face many barriers to accessing healthcare services. These barrers often mean that they do not access primary care. Their health conditions are not well managed and their care is often crisis-led. People who are experiencing homelessness are more likely to use accident and emergency (A&E) and to have emergency admissions to hospital.

Fear of being treated badly

People experiencing homelessness may be worried about how they will be treated. They might have had a negative experience in a healthcare setting in the past. This could make them less likely to trust health professionals. They may also fear that they will be discriminated against.

Substance use

People who use substances and alcohol may not want to use services where substances and alcohol are not allowed. People may find it hard to balance their healthcare needs with other practical or social needs. These include having to find somewhere to live or sleep, managing finances or dealing with challenging personal relationships.

Registering wih a GP

There may be practical barriers to accessing healthcare services, such as difficulty registering wiht a GP. Some GP practices ask for proof of address and personal identification to register with the practice.

NHS guidance for England states that people do not need proof of address to register with a GP or to get an appointment. If someone experiencing homelessness is having difficulty registering with a GP in England, they can apply for a My Right to Healthcare  card to support their case.

In Scotland and Wales you do not need an address to register with a GP but someone experiencing homelessness will need to register as a temporary resident and may need to provide the address of a friend or a day centre. In Northern Ireland, GP resistration forms ask for an address.

Access to palliative care and end of life care services

People experiencing homelessness who have a terminal illness also face additional barriers to accessing end of life care services.

Healthcare professionals can find it difficult to know when someone who is homeless would benefit from referral to palliative care services. This could be because they:

• may have less interaction with healthcare professionals, especially in primary care
• may have complex health needs
• might have conditions with uncertain prognosis, such as drug or alcohol-related liver disease
• on average die younger than most people who are referred for end of life care.

Professionals working with people experiencing homelessness such as hostel staff or outreach workers may not have any training in recognising health needs, particularly at end of life. They may also worry about discussing difficult issues for fear of removing hope in people who are already very fragile, often using substances to block out past trauma.

Because of these factors, advance care planning rarely happens with homeless people, meaning that what they wish for their care towards the end of their life is rarely known and therefore is not met.

Care in hospitals or hospices

For some people with a history of homelessness, staying in a hospice or hospital can be challenging. The medical environment may feel very unfamiliar and uncomfortable. If someone feels that they’re not being listened to or if their needs are not met, they might behave in a way that is hard to manage. People who smoke or use drugs and alcohol may find it difficult to stay in a place where this is not allowed. If addictions are not properly managed they might experience withdrawal.

For these reasons, people who are homeless might want to self-discharge before their treatment is finished. Unplanned discharges can mean that the hospital team is not able to properly communicate a treatment plan with the community team. The person may not receive the ongoing care that they need.

Hospital or hospice staff may find it difficult to support and care for people with these complex needs. Working in partnership with local homelessness and substance misuse services can be helpful. These services can provide support to people who are homeless and also share their expertise with hospice or hospital staff.

Having a person-centred approach to care that ensures the perosn feels heard and listened to and is supported by a multi-disciplinary team, can improve care and support and reduce the risk of self-discharge. Volunteers with experience of homelessness (peer advocates, see below) can be valuable at supporting people to cope in what is often a very challenging environment.

Care in the community

People living in homeless hostels often stay there as their health gets worse. This can be for a number of reasons, including there being no other appropriate place of care, or because they view it as their home. In these environments, there may be little or no input from health or social care teams. Hostel staff try to support people with complex health and social care needs. But they usually do not have any specialist training, and there can be little in reach from healthcare professsionals. They can therefore feel isolated and carry huge burdens of responsibility in supporting people with complex needs.

For healthcare professionals, supporting someone within a hostel is sometimes very different from the care that they usually deliver. There can be issues around a lack of privacy and difficulties in finding a place for safe storage of medicines.

Social support

People experiencing homelessness are less likely to have support from family members or friends. This means they are less likely to have family to advocate for them or manage their practical, financial, physical and emotional needs. Hostel staff or outreach workers often provide some support with these needs and should be included where possible in discussions about the patient's care.

Managing pain with problem substance or alcohol use

People who use drugs and alcohol, or have done so in the past, may have complicated pain relief needs and concerns. Specialist palliative care teams and substance misuse teams should be involved in the person's care.

How can I support a homeless person who needs end of life care?

Be aware of the issues they may have

Understanding the challenges they have faced, and are currently facing, can help you to understand the person’s needs in context. Involving hostel staff or other people who the person trusts can help you provide person-centred care in line with their wishes.

Consider the person's individual circumstances

When planning care for a person experiencing homelessness, think about their living situation, social support network, contact with community services, psychosocial needs, any history of substance use, and barriers to accessing care.

Support people registering for a GP

You can help people 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 or someone close the person, such as their keyworker helps (see below).

Take a multidisciplinary approach and involve staff in the community 

Include a range of services in the community such as health, social care and homelessness services when planning care. You could involve community staff who know the patient well to make sure the care you deliver is person-centred. They can also help to identify changes in the person's health. This could include staff in hostels, day centres, refugess, and homeless teams in hospitals.

You could attend or organise case reviews with community staff for people 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 patients. If you are a trained specialist, you could offer training in end of life care to homeless service staff. You can also ask them to train you on the challenges of caring for people who are homeless. You could also offer bereavement support to hostel residents and staff. This can help you build relationships and raise awareness about the services you can provide, as well as help you to learn from their experiences. 

Providing regular support and training to hostel staff has been found to be useful for both supporting the staff in homeless hostels and ultimately improving access to palliative care for people experiencing homelessness.

Plan early interventions

It’s difficult to know when a person with these complex needs may be approaching the end of their lives, so it can help to star planning care earlier when you notice a deterioration in the person's health, rather than waiting until you think they are dying.

Start conversations about future care earlier

Advance care planning rarely occurs for people experiencing homelessness for some of the reasons outlined above.

Conversations with patients about their health, what living well would mean to them, and their choices for the future, should happen early. This can help you to understand what is important to them. It may also make conversations about end of life issues, further down the line, a little easier. 

You could also attend team meetings at local homeless services to find out whose health might be deteriorating. 

Parallel planning can be a helpful approach when it's hard to make an accurate prognosis of how long someone will live, as can often be the case when a person has addiction issues. Parallel planning means hoping and planning for the best, as well as planning for the worst. It focuses on what living well means to a person, and how we can support them with that, rather than focusing on end of life care wishes.

Supporting people with substance use problems at end of life

Create working partnerships with local drug and alcohol services to provide effective support for people who use substances. A good practice guidance has been created to provide support to healthcare professionals around support, care, and advice on pain and symptom management for people with substance use problems at the end of life.  

Support the people helping the person

Offer support to family, friends, or staff (such as hostel, outreach or day centre staff) who may be able to help the person access care. If the person wants to find family they have been separated from, they could access the Salvation Army’s family tracing service, although this is a paid-for service.

Look into peer advocacy services

Some organisations 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. Advocacy. In London, Groundswell supports homeless people with a Peer Advocacy service.   

Find out more

Researchers from the Marie Curie Palliative Care Research Department at UCL, St Mungo's   and Pathway have developed a resource pack, the Homeless Palliative Care Toolkit  , with practical tools and templates for supporting homeless people at end of life.

The Queen’s Nursing Institute has produced a Homeless Health Assessment Tool   to help nurses make a holistic assessment of the health of homeless people.