For most people, when asked where they would like to be cared for and to spend their last days, their wish is to be at ‘home’. Home means so much more than just the physical structure you live in; it’s a place of emotional support, safety, shelter. A place to retreat to at the end of the day and somewhere to take shelter from the world when you are unwell.
It is estimated that at least 150 million people across the world do not have a place to call home. Instead, they live their lives on the streets, or staying in insecure or temporary accommodation. These environments are often ill equipped to support someone whose health is deteriorating.
For people experiencing homelessness who are in need of support for cancer or other life-limiting illnesses, there can be many barriers to care. These barriers can be systemic and due to inflexible and fragmented health systems that are difficult to navigate. Add to this individual vulnerabilities, such as complex trauma, mental ill health or addiction issues, and you have layers of multiple disadvantage emerging.
These experiences demonstrate Hart’s inverse care law;
those most in need of support have the most difficulty accessing care (Hart, 1971).
Sadly, this results in high rates of multi-morbidity and early mortality, with research finding that people affected by homelessness often die 30 years younger than people who are housed. These deaths are commonly as a result of treatable medical conditions, and happen in unacceptable situations with very little support. Palliative care is unsurprisingly very unusual.
A different approach
At St Ann’s Hospice in Greater Manchester (UK), we envisioned a different approach to care in order to reach people who might not traditionally access our services. We always want to provide support in a way that is best tailored to people’s individual needs and wishes, and recognise that a hospice building isn’t always right for everyone.
In my role as Homeless Palliative Care Coordinator, I go out into the community to reach people where they are – no matter where they are. This could be a homeless day centre, on the streets, in a hostel, or in someone’s own accommodation.
Our service helps people make informed decisions about their care, challenges inequity and advocates for their rights, and supports them through challenging times. We can help people reconnect with loved ones, and when needed, ensure the provision of specialist end of life care too.
I also work with and train organisations who support people experiencing homelessness, to better identify those in the last year of life. When we reach people earlier in their illness, we can build trust and relationships and support people to live well – whatever that may mean for each individual.
When we identify that someone may be in the last year of life, we work closely with the individual and the people closest to them – their friends, staff in hostels and other professionals who know them well. By working together and keeping the individual at the centre of the decision-making process, we can make sure their support and care is appropriate, person-centred, and delivered in the right place and in the right way for them. We can support people to die well, with dignity, and support those around them when the time comes.
Sharing experiences and best practice
With funding from the National Lottery Community Fund, St Ann’s Hospice commissioned a new film to bring together voices from across the hospice and homelessness sectors. The short film raises awareness of the barriers people experiencing homelessness face in accessing palliative care, and highlights best practice from services across the UK.
Some of the models of delivery that are highlighted in the film include:
- Hospice in-reach to homelessness sector services, like St Ann’s Homeless Palliative Care service
- Twinning hospices and hostels, which supports multidisciplinary working and training across teams
- The Housing First model of care, which provides wrap-around support
- Peer advocacy, people with lived experience working with clients to improve engagement with health services
- Primary care services which are consistent, build trust and are flexible to people’s complex needs and wishes.
Leading voices from the sector, including Dr Caroline Schulman, Dr Ruth Eldson, Dr Kathryn Mannix and Sir Ed Davey, share some of the structural causes of homelessness and explore circumstances which may make people more vulnerable to homelessness, such as the impact of trauma, adverse child experiences, bereavement and relationship breakdown.
The film features interviews with people who have lived experiences of homelessness, including peer advocates who now support others to access and engage with health services. They share their experiences of homelessness and what it means to them to now help others live well and have dignity in death.
The film is dedicated to Bobby, who sadly died shortly after filming. He was interviewed amongst some of his paintings and artwork, and shared his experiences of homelessness and illness, accessing healthcare and what ‘living will until the end’ meant to him.
What can hospice and palliative care organisations do?
It’s not realistic, fair or compassionate to expect someone to change at the end of their life, to fit in to a service or culture they have spent their lives living outside of. We need to accept people for who they are, where they are, and support them without judgment.
One of the only ways to do that is by providing care in an environment that someone is familiar with – by upskilling hostel staff or creating environments within the homeless sector where someone could approach the end of their life or die there with dignity.
There are several more steps that hospices and palliative care professionals can take which are highlighted at the end of the film. They outline ways to improve equity of care for this underserved population, whether that’s in a hospice setting or by working across sectors:
- Consider your training needs, and how to make your service more inclusive and trauma-informed
- Build relationships and collaboration between health, palliative care, drug and alcohol, social, housing and voluntary sectors in your area
- Develop specialised services for people experiencing homelessness with high support needs.
The short film, ‘Homeless, young and dying: we can do better’ is freely available online for professionals to watch and share, with signposts to other relevant resources. I hope it gives hope that by working together, we can continue to effect change and improve the lives of thousands of people who need specialist care at a vulnerable time in their life.
Everyone deserves to die with dignity. As professionals working in palliative care, we can’t ignore the barriers that people affected by homelessness face when approaching the the endof their lives. We can and must do better, together
Watch the film here.
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