Rethinking palliative care for people affected by homelessness

Well-timed palliative intervention can be a game-changer for people affected by homelessness facing advanced ill health, says Karita Razzell, palliative care manager at the charity St Mungo’s

UK homelessness has reached record levels in recent years, with many of the people affected not accessing the healthcare they need.

As palliative care manager at St Mungo’s, the leading homelessness charity, I work with people who have been homeless for a long time and are dealing with life-limiting health conditions.

The outcomes are often not promising for people in this situation. The average age of death in the UK for people experiencing homelessness is 45 for men and 43 for women.¹ Evidence shows that there is a high incidence of chronic illness in people affected by homelessness, much higher than the general population.² A report by Crisis found that those experiencing homelessness are twice as likely to die from cancer, seven times as likely to die from alcohol-related causes, and seven times as likely to die from infectious diseases – such as HIV or hepatitis – as the general population.³

There are various reasons behind the stark health disparities faced by people experiencing homelessness. Barriers to accessing testing and treatment are significant. Many individuals are living with serious mental health conditions, substance use issues, undiagnosed neurodiversity, and chronic physical illnesses – all of which can make clinical environments like hospitals particularly challenging for them.

Treatable conditions in people affected by homelessness often go undiagnosed until they reach an advanced stage

There are also digital hurdles: appointment systems and prescription services are increasingly online, yet many people without stable housing lack access to mobile phones or the internet. Public stigma around homelessness further erodes trust between people affected by homelessness and their healthcare providers, making it even harder to build the relationships necessary for effective care.

Related Article: Analysis: The vital role of health visitors in empowering homeless families 

As a result, treatable conditions in people affected by homelessness often go undiagnosed until they reach an advanced stage. Even if treatment begins, many will struggle with intensive courses of therapy. This all contributes to the higher mortality rates often seen within people affected by homelessness – and further complicates clinical decisions around determining when palliative care is appropriate.

So, how should clinical teams make this judgement for patients affected by homelessness, and what considerations need to be taken into account?

I work with nursing professionals across health inclusion teams, oncology, renal, hepatology, palliative care and rapid response services to ensure St Mungo’s clients access palliative care at the right time, and that their wishes are adhered to.

Parallel planning

Identifying that somebody needs palliative care is often the first hurdle, especially when that person is dying from what may usually be a treatable condition. Take, for example, the case of a homeless 50-year-old with a history of substance use who is receiving dialysis for kidney failure. While they are attending dialysis three times per week, they can seem to be doing quite well. But there are many reasons – rooted in the trauma of their homelessness – why this person might not continue with their treatment.

The optimum way of working is for the curative pathway and the palliative care pathway to run alongside each other

If that happens, the optimum way of working is for the curative pathway and the palliative care pathway to run alongside each other, in what’s known as parallel planning. I’m often met with surprise when I suggest this to clinical teams, and I understand why. The person’s condition is manageable, if they commit to their treatment. Isn’t it too soon to be considering a palliative course? But this fails to recognise the additional, trauma-informed challenges of homelessness itself.

It’s about hoping for the best but planning for the worst. Because if we don’t plan for the worst, somebody could die without the care they need.

By introducing palliative care interventions early, we can focus on building a trusted relationship with the person, which is particularly important and difficult to do with people affected by homelessness who typically experience stigma and discrimination.

By investing time to build that trusted relationship early on, people can be encouraged to speak freely with their clinicians without fear of judgement. This can help them to deal better with difficult situations, because they feel understood by the people supporting them.

Prioritising control and choice

People affected by homelessness aren’t used to having their voices heard and their choices respected. For a large part of their lives, major choices like where they can live and whether they can work have been stripped away from them. These are things most of us take for granted, but they are crucial to our sense of control over our own lives. Advancing ill health can only magnify this sense of loss for people affected by homelessness – and drive them even further away from engaging with their clinicians.

This is where palliative care comes into its own, because control and choice are at the heart of it. By prioritising these aspects of the palliative care pathway early on, and placing it alongside the curative pathway, we can more effectively encourage people affected by homelessness to engage with the curative model.

By honouring people’s choices, we can encourage people to commit to the recovery model – and even find a way to manage their condition and cope with their curative treatments for a long time.

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But it’s also important to recognise that not everybody is going to be able to choose to change their lives. Even then, we must respect those choices and focus on quality of life. As anyone working in the homelessness sector can attest, it’s likely to be a very changeable road where a person could move from the curative pathway to the palliative care pathway, and back again.

Even if they do disengage from the hospital team, or from treatment and the doctors’ appointments, it’s important their symptoms are still being treated palliatively, with dignity. It’s about keeping that access always open.

Changing language

Language matters, and the word palliative holds close associations with end of life and dying. But for people affected by homelessness, palliative intervention can be appropriate at an earlier stage when curative treatment is still available.

So, perhaps we would be better talking about advanced ill health when it comes to people affected by homelessness – and focusing on what it means to live well with advanced ill health to direct those conversations around wants and needs for their care.

Listening is key

A recent client of mine was adamant that she wanted to die in the hostel where she lived. It was the closest thing to home for her. Although I knew she’d do best in a care home, I didn’t try to change her mind. Instead, we sat and talked together. I listened to what she had to say, and at the right time, I slowly and carefully explained things to her so we could build up trust. Eventually, she decided for herself that the care home would be the most comfortable place for her end of life.

This really encapsulates the importance of listening and giving people space to talk. I understand everybody is working with limited time. Perhaps this is where the palliative care intervention can help. If you can carve out time to listen to people, and to give them space to express their choices even if it’s not what you think is best for them, you can start to build trust. When people know they are not being judged, they are more likely to listen and start making choices that will benefit them.

To find out more about St Mungo’s, visit mungos.org

References

Related Article: Over one million children living in homes causing asthma and chronic illness

1 Deaths of homeless people in England and Wales – Office for National Statistics

2 Morbidity and mortality in homeless individuals, prisoners, sex workers, and individuals with substance use disorders in high-income countries: a systematic review and meta-analysis – The Lancet 2018

3 Crisis. 2012. Homelessness kills: An analysis of the mortality of homeless people in early twenty-first century England. crisis_homelessness_kills_es2012.pdf