3 March 2023
Solving whole problems for people – why we’re expanding our service
What people have told us about using advance decisions (living wills) and LPAs, and what we’re doing to help.
Working in the open
We want to solve ‘whole problems’ for the people we support. So, whilst historically we’ve focused on helping people complete advance decisions (living wills) and lasting power of attorneys (LPAs), we’re now spending more and more time helping people (or usually their family and friends) who are having trouble ‘using’ the documents when they need to.
Over time, this has evolved in to our new ‘in-depth support’ service.
It’s just like a blank wall, the busy stressed people who don’t want to listen to you. And that, that was such a shock. I mean, obviously I’m dealing with my mum dying, which is also quite a shock, but to be faced with that right up until the moment when we moved into palliative care, then it was fine. I just had no idea. I had no resources. I had no strategy. I had no idea what to do.
A quote from our user research
Thousands of people turn to us each year for help to talk through and document their end-of-life wishes. Our focus has largely been on supporting people to create robust documentation to help ensure when it matters – it is clear what they do and, crucially, do not want. Our focus on recording wishes, alongside conversations, stems from the experiences people tell us about – that past conversations alone can’t be relied upon to ensure someone’s wishes are respected, especially when these decisions relate to life sustaining treatment.
But for some time now, people have been telling us that despite their loved ones explicitly documenting the treatments they refuse or deciding who should make decisions for them if they no longer can, they’re faced with barriers that undermine this planning at the crucial point that it’s needed.
Policy vs. practice
The people we support are consistently reporting a worrying disconnect between policy (what should happen) and practice (what does happen) when it comes to how decisions are made at the end of life. This has really caught our attention. Supporting people to remain in control of decisions at the end of life is at the very heart of what we do. But to do this meaningfully, and if we are to acknowledge this disconnect properly, we have realised that we need to extend the way we work.
The issues people are coming to us with are pretty broad and range from ensuring a relative’s applicable and legally binding advance decision (living will) is followed, to people struggling to be heard despite being appointed as a health and welfare attorney.
The common thread always relates to a break down of communication and understanding (by both relatives and the clinical team) in terms of how decisions are made when someone is critically ill and unable to make decisions for themselves.
Insights from the people we support
We did user research with people we’ve supported, here’s what we found:
- Many people are having an awful time trying to exercise their decision-making authority as attorneys
- Relatives often feel like their motives are being questioned when they push back against treatment decisions that don’t align with a loved one’s wishes and values
- People were going through what they’ve described quite agonisingly as a ‘double-trauma’ of a relative dying AND fighting the healthcare system
- Disagreements relating to treatment decisions and poor communication lead to a breakdown in the relationship with their clinical team
People seem to come to us organically for this support, but it still feels as though they’re stumbling across us and often say they wish they’d found us sooner. So, as we’re building a new website, we thought it was a good time to share more about how this new service helps to combat the problems people are encountering.
Enabling works better than advocating
We learnt pretty quickly that stepping in as a third party to advocate on behalf of the person calling us, isn’t usually very helpful.
Instead we focus on enabling the people we support to feel more confident and in control. How this happens varies depending on the situation, but can involve:
- Coaching people on how decisions should be made, drawing on the relevant parts of the Mental Capacity Act 2005 legislation
- Broadening their understanding of what should be happening and what they should be expecting from the clinical team, all within the context of their situation
- Drafting letters to healthcare teams (that reference key parts of the legislation)
- Multiple calls and emails to understand the situation and identify the decisions and conversations that have led to someone’s love one’s wishes potentially being not known about, overlooked or ignored
We spend a lot of time coaching health and welfare attorneys to better understand their role and how they can fulfil it. They come to us feeling helpless and desperate but the process of this coaching changes that – which is incredibly rewarding.
I had no idea. I didn’t know anything about great, big mad hospitals. And I just knew that I was, I was being pushed, pushed away and I wasn’t able to get what I, by that stage I knew my mother wanted, which would be to be allowed to die as soon as possible.
A quote from our user research
At Compassion in Dying we are driven by what people tell us. What better way to illustrate both the significance of this problem and the value of this service by hearing directly from someone we’ve supported.
So by the end of the second week, before she had a second stroke, it was clear to me what she wanted. Then it was a sort of all out fight with the hospital for two weeks. And that was when I really needed you because I was just completely overwhelmed by this dysfunctional system that I was not coping with, feeling just abused by it and me with all my education and resources and backup and people. I just couldn’t… I just, if I hadn’t found you at that point, I don’t know what I would’ve done, but it was awful.
A quote from our user research
Our new service is here for anyone who needs support to help ensure their loved ones end of life wishes are respected when it matters.
Our specialist nurse can give you the expert knowledge, skills and confidence to fight for the right care and treatment for your friend or relative.
Other blogs in this series