Palliative care reform urgently needed for people experiencing homelessness

• Written by: Dr Joy Rafferty — Marie Curie
• Published: 29th June 2021

Dr Joy Rafferty, a speciality doctor in palliative medicine, reflects on homelessness and end of life care.

Gemma was 36 years old.  Many difficult experiences and complex trauma led to her experiencing homelessness and problem alcohol use.  Following an emergency hospital admission, she was diagnosed with alcohol-related liver disease and told it was end-stage.  Over the next year she had multiple episodes of deterioration and crisis admissions to hospital.  As soon as Gemma started to feel better, she would self-discharge from hospital, return to her homeless accommodation and start drinking again.

Each time her health became poorer.

One day her support worker found Gemma collapsed in her homeless accommodation and an ambulance was called.  She died in hospital a few days later*.

Each year in Scotland over 200 people die while homeless, often in shocking and difficult circumstances.  The average age of death is just 39 for women and 43 for men. Scotland has the highest rate of homeless deaths in the UK, almost three times that of England and more than three times that of Wales.

Despite those experiencing homelessness having significantly worse health and more complex needs than the general population, they have poorer access to palliative and end-of-life care when they need it most, and it’s often unclear what, if any palliative care, they have received at the end of life.

Palliative care supports people who are terminally ill – meaning that they have a condition that will likely lead to their death. It supports people to have a good quality of life by helping to meet people’s physical, emotional, psychological, practical and spiritual needs and enabling them to live as well as possible in the time they do have left.

Cicely Saunders, the founder of palliative care, said:

‘You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.

So how can we make this a reality for people like Gemma?

A new report co-authored by Marie Curie and myself, Dying in the Cold: Being homeless at end of life (this link will take you away from our website) explores the significant challenges faced by those experiencing homelessness when accessing palliative care and calls for urgent reform from the Scottish Government and Health and Social Care Partnerships:

• Providing specialist palliative care teams who can work flexibly, across geographical boundaries and collaboratively with existing services caring for people experiencing homelessness and other severe multiple disadvantages
• Closing the digital poverty gap by increasing access to up to date devices for remote consultations
• Increasing the provision of Community Link Workers
• More proactive identification of people experiencing homelessness admitted to hospital with advanced ill health
• Partnership working between palliative care providers and homeless accommodation providers to provide community palliative and end of life care beds as an alternative to hospital admission.
• Palliative care training and support for homelessness services
• Development of bereavement support services specifically for those experiencing homelessness and staff supporting them

There are many challenges involved in how we identify, engage with and best support those experiencing homelessness with advanced ill-health, but doing nothing is not an option. Urgent reform is needed to ensure that people experiencing homelessness can get the palliative support they need to live as well as possible.

* Gemma’s story comes from patients we have known

Dr Joy Rafferty is a specialty doctor in palliative medicine at Strathcarron Hospice. You can read the full report co-authored with Marie Curie here (this link will take you away from our website).

Please do share the report into your networks, Marie Curie and Dr Rafferty welcome any feedback or opportunities to collaborate:

E: Ellie.Wagstaff@mariecurie.org.uk

E: Joy.Rafferty@nhs.scot

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