Compassion in Dying and St Mungo’s, in partnership with their residents, have developed an advance statement for people who have experienced or are experiencing homelessness (PDF, 123KB). This is a joint blog authored in partnership and published on both organisations’ websites.
Recognising the past when planning for the future
We know that when people are able to consider and record their preferences for treatment and care, and are supported to do so, it can have a positive effect on their end-of-life experience. It also provides peace of mind and reassurance to people in the present, knowing that steps have been taken to ensure their wishes will be respected in the future.
For people experiencing homelessness, there is often little support available to plan ahead. As the CQC reported, the needs of homeless people are not well understood or considered by health and care services and where services do exist, they are often fragmented and work in relative isolation.
In light of this, Compassion in Dying and St Mungo’s worked in partnership at their registered care homes, to co-develop the advance statement for people experiencing homelessness. St Mungo’s care homes provide care and support to individuals with a range of complex needs, all of whom have experience of homelessness. The aim was to work with St Mungo’s residents to find out what information they needed to enable them to make a decision about if planning ahead was right for them, and what support they needed to do so.
A form that resonates and better conversations
Through a series of workshops and one-to-one conversations with residents at two St Mungo’s homes, we learnt a lot about how people who have experienced homelessness feel about the notion of choice and making decisions about the future.
Some people found thinking about advance care planning hard and others felt it was pointless. Some people did want to plan ahead because they had been affected by the deaths of others, and found doing so gave them confidence in what might happen in the future. People shared deeply personal experiences and insights into what would make an advance statement feel relevant to them.
We are publishing the form so that other people who have experienced homelessness can have access to a way to record their wishes that has been designed by people who have walked in similar shoes to them. And so that professionals who might be having such conversations understand how some people who have experienced homelessness perceive advance care planning, and why some might not want to have such conversations.
Starting a conversation by exploring identity
We asked people to bring one thing to a conversation that was important to them and their identity. Suggesting day-to-day items like warm socks if they feel the cold, a favourite record or a book they’ve enjoyed.
People spoke passionately about what mattered to them. They discussed music they enjoyed and watching TV. They also chatted about the foods and drinks they liked, this was particularly important to many.
“Things like having access to TV and Wi-Fi can make a big difference to our lives.”
“I like Strongbow and a large Whiskey.”
The importance of the past
Talking about the important things in their lives now, made many people reflect on their history and experiences. Some shared stories from before they became homeless and the important parts of their identity back then, such as religion, family and socialising.
Some talked about their achievements and the people they had met along the way. Times they were proud of were important to share. One person spoke about spending time writing about their past as a way of processing and that looking back was a cathartic way of living in the present.
I write autobiographical stuff, people I have met in my life.
Other people mentioned their addictions, and one talked about how his experience as a homeless person made him realise he likes to help other people.
Current needs were often more important than thinking about the future
When thinking about their health and care wishes for the future, many people instead wanted to talk about their current needs. A common theme was how they struggled to get the care they needed and suffered from ill health with little support.
At the moment some people don’t feel listened to and feel that their needs are not being fulfilled.
This often led on to speaking about the multiple struggles people were contending with, such as financial troubles and benefit support: “people have a lot of different problems to cope with right now”. For some advance care planning was, understandably, low on the list of much more pressing things that needed addressing in their lives.
What’s the point? We need to change the bigger picture.
It’s important to acknowledge that for many people who have experienced homelessness, advance care planning may be challenging and emotive and they may not want to engage in it. This should always be respected.
The absence of choice
The concept of having choice felt alien and therefore difficult for some people to engage with. For most, they said that they are not offered a lot of options in their life, be that where they live, what they eat or how they choose to spend their time. A common response to questions about what matters to them was “I don’t mind”.
The sessions also brought out some deeper feelings that people were grappling with, with many reflecting on the independence they once had. Similarly, some talked about the lack of agency they continually felt.
Independence is very important, and it can be frustrating to feel you may have lost some control of your life.
For some people, being asked about what they would want to happen to them in certain situations in the future therefore felt more like a confrontation of choice, rather than the considered process of planning that was intended.
The feeling of absence of choice is not unique to those experiencing homelessness when it comes to health and care services. This has been echoed throughout Compassion in Dying’s work supporting other community groups to plan ahead, and people navigating the healthcare system with long-term or terminal conditions.
A new advance statement
Some residents did have preferences for their care in the future or wanted to make sure people caring for them knew what mattered most and therefore wanted to complete an advance statement. We used Compassion in Dying’s template form as a starting point. As expected, it soon became apparent that this form did not meet the needs of most people we spoke to in this project. So we worked with St Mungo’s residents to develop the new form based on what resonated with them. Here’s what they told us:
- ‘Family’ can be triggering: We removed the words ‘friends’ or ‘family’ from the entire form, as the majority of people were estranged and therefore found being asked to write about them triggering.
- Removing jargon: Some didn’t understand the term ‘healthcare professional’ so we changed this to ‘doctor’, which people did understand. We also renamed the form ‘My health and the future’ because people didn’t understand what advance statement meant.
- Providing a space to talk about the past: the majority of people wanted space to write about the time in their lives when they had more independence. And to tell the story of who they are in terms of what they’ve done and their achievements. So we added a new section, which is an improvement to our form that we believe many people could benefit from.
- Talking about hospitals differently: Most people spoke positively about being in hospital, as it presented a comfort that they don’t always have elsewhere. This is in contrast to the majority of people we support through our information service, who often want to avoid hospital if possible.
- More space to talk about food and drink: most people spoke enthusiastically about food and drink and how this brought joy to their lives. This needed to be reflected in the form and so we built greater emphasis into this section adding more space and prompts.
- Deprioritising Compassion in Dying’s logo: some people didn’t like to be confronted with the word ‘dying’ from the outset, so we moved our logo to the back page. We also added the St Mungo’s logo to give the residents ownership over the form they were helping to create.
Residents felt the new advance statement better reflected their values and interests. St Mungo’s told us they were glad that staff and residents in these specialist services were able to contribute to the development of this work. Their Life Changing Care Report published last year, highlighted the growing need for more specialist care placements for people with experiences of homelessness and this form is supporting their existing staff teams in their aim to help people to live and die with dignity in the place they call home.
Let us know if it works for the people you support
The ‘My Health and the Future’ form (PDF, 123KB)’ is available for anyone to use. We hope it will make recording what matters to you easier for people with experiences of homelessness and want to plan ahead. We also hope that sharing the experiences of the people who took part in this project will enable a better understanding of the complexities of making health decisions for many.
If you have reflections on the work or feedback on the form we’d love to hear from you.
Thank you to the residents, staff and volunteers at St Mungo’s Hilldrop and Chichester Road homes, who contributed their expertise, experiences, time and enthusiasm to this work.