Should we talk about death?

Our Palliative Care Coordinator Andy Knee poses this important question and highlights the innovative ways our Palliative Care Service is supporting clients who are at risk of death or in need of bereavement support.

Should we talk about death? In St Mungo’s Palliative Care team, we think the simple answer to this question is yes.

Death is something that affects us all, that does not discriminate against gender, race, sexuality, culture, or religion. Many of us are fortunate to talk about death and our wishes with loved ones. But what if you don’t have a home? And what if you don’t have family or loved ones to have these conversations with?

This is a sad reality for lots of people who experience homelessness. A reality where many of their deaths will be preventable, undignified and untimely, with no planning for their wishes, and sadly many will be forgotten.

In 2017 there were an estimated 597 deaths of homeless people in England and Wales, which represents a 24% increase since 2013. The NHS has recently reported a rise in homeless patients returning to the streets with many observing a surge in serious illnesses in the past decade such as respiratory conditions, liver disease, and cancer. Without someone to be their voice and their advocate, many individuals will be trapped in a harmful cycle of being admitted to hospital and discharged to the streets. This is something we can change.

Dying Matters Week 2019

‘Are we ready?’ is the poignant theme of this year’s Dying Matters Week, which helps to raise awareness around this issue. At the end of 2018 we responded to the increase in homeless deaths and continue to pave the way in making change for people experiencing homelessness. We know the importance of providing end of life care and support to our clients, and we are using creative and innovative new ways to provide this service.

Our Palliative Care Service

To mark Dying Matters Week, we’re shining a light on our Palliative Care Service. This service is the only one of its kind in the homelessness sector and has benefited from dedicated funders over the last five years.

The purpose of the Palliative Care Service is to coordinate a flexible and responsive care pathway to support clients who have a terminal prognosis or acute and potentially fatal health conditions, and to provide them with options that protect their quality of life. The service works to ensure that our clients can access healthcare and that we provide appropriate support to help them approach the end of their life with dignity and respect.

We meet with local health services, lead change with research, and continue to develop tools and support structures for St Mungo’s. We’re also here to support staff across St Mungo’s to feel empowered and discuss death as openly as possible.

Our aim is to ensure that everyone experiences a ‘good death’. We are also working to destigmatise this term, which holds so much power and importance.

New Befriending Service

This year the service has expanded to include our Palliative Care Volunteer Coordinator, and in June 2019, St Mungo’s will launch a new Befriending Service.

The Befriending Service will serve to support clients that are at risk of death, or clients who need bereavement support for a recent or historical loss. In addition, the Befriending Service will support colleagues and teams around loss and bereavement, reinforcing our message: “you are not alone”.

In response to the theme of Dying Matters Week – “Are we ready?” – St Mungo’s can proudly say “We are, and will continue to be.”

Find our more about our Palliative Care Service.

Hope from terrible tragedies

Niamh Brophy is St Mungo’s Palliative Care Coordinator. We are the only homeless organisation to have such a person, supporting both clients and staff with ‘end of life’ experiences.

For most of us, I hope Dying Matters Week is an opportunity to talk to our loved ones about death and the things that feel important to us: where we’d like to be cared for (for most of us it would be at ‘home’), and how we’d like to be remembered by our loved ones.

But what if you don’t have a home? And what if you don’t have a family or support network to have these conversations with?

This is the reality for the rising numbers of people experiencing homelessness. For many, their death will go ignored, not given the dignity or respect they are due, and with little planning given to their end of life wishes or preferences.

This year’s Dying Matters Week (14-20 May) comes at a particularly poignant time. Recently, news that the number of deaths of people sleeping rough has more than doubled in the past five years shocked the public.

These are individuals dying in car parks, on street corners and park benches, with no one around to support them as their lives draw to a close. This is desperately sad, and something most of us would think completely unacceptable in our society today.

But from these terrible tragedies has sprung some hope. Campaigns have been launched to address and prevent these deaths from happening in future such as the #makethemcount campaign.

Ed Davey MP has also proposed a new Homelessness End of Life Care Bill that aims to ensure people do not die homeless and alone on the streets, but have access to care and accommodation for the end of their life.

At St Mungo’s we contributed to both of these initiatives. But more work is needed to ensure people get access to the care they need. That’s why we’re calling on the Government to ensure a review is carried out every time someone dies on the street, as part of their new rough sleeping strategy. This would ensure deaths no longer go ignored, and that lessons can be learnt to ensure such tragedies are not repeated.

St Mungo’s were also involved in research published last year that explored the unique challenges in providing end of life care to people in hostels. What emerged was a picture of great complexity, but also plenty of opportunity to improve the experience of residents and staff when faced with such difficult situations.

It’s now a decade since St Mungo’s first acknowledged the importance of providing end of life care to people who are homeless by establishing a Palliative Care role.

In response to the increase in need of our residents, and the growing numbers of people dying on the streets, we will be expanding the service in 2018 and recruiting another member of staff to ensure all residents can be supported and cared for in the way that feels right for them.

We continue to work every day to ensure our residents can access healthcare and be supported to approach the end of their life with dignity and respect. This Dying Matters week, we would encourage everyone to start a conversation on how we as a society can prevent the unnecessary deaths of people sleeping rough, as well as how we treat homeless individuals with dignity as they approach the end of their life.