Everything everywhere all at once
I have worked with Compassion in Dying for over a year now on trying to understand how and why so many people’s wishes for a less intervention heavy, crisis driven approach to healthcare at the end of life are disregarded. During this time, I have had my heart broken, my mind expanded and my spirits lifted.
What people experience
I have had my heart broken by listening to what people talk about when they call Compassion in Dying’s information line – opportunities missed to surface and document people’s wishes, people’s preferences dismissed, family members accused of wanting to end their loved ones’ lives just for fighting for what they know they’d want. It is high time we call these care failures what they are: infringements of people’s rights and their legitimate expectation that healthcare should, above all, be kind (first: do no harm). These are all unforgivable situations – we can never put right the bad death someone experiences, and their loved ones witness.
What clinicians experience
I had my mind expanded when the team at Compassion responded to these extremely poor experiences with curiosity rather than judgment. We commissioned in-depth interviews with professionals who routinely look after dying people outside of specialist palliative care.
And what we found out was enlightening: Professionals repeatedly describing how of course they don’t want to provide unwanted treatment or disregard a person’s wishes, but how unsafe it feels in reality to make these decisions, when you have never met the patient, when the paperwork that arrives with them is patchy, confusing or inaccessible, and when you don’t have a strong sense of how to stand up a reliable, timely response to this person’s needs for personal care or pain relief or oxygen in the community, and in their own home.
It was so instructive to hear about these experiences, and to understand that as long as ordering another test, admitting, or escalating care feels safer to frontline professionals than respecting people’s individual wishes, we will not shift the dial.
How to drive changes
And I finally had my spirits lifted when we convened a group of thoughtful and clear thinking policy experts to discuss how current health reform processes (neighbourhood health, single patient record, the modern service framework for palliative and end of life care) could and should be used as levers for changing this culture and these organisational contexts which make it so hard to hear what people say, and to act on it.
Dr Vinnie Nambisan, Dr Minal Bakhai, Jacob Lant and Dr Sophy Gretton set out how this system in flux could and should be shaped to respond better to the needs of people nearing the end of their lives. We discussed how these different strands of reform are mutually dependent: we need to build coherent community teams, across sectors and partnerships, but they can only work if they can see and share the same patient record and that record shows clearly what decisions a person has made. We need to shift to new service models – person centred, community based, preventive – but that can only happen if we invest in the skills and support for professionals who are asked to move beyond the safe boundaries of organisational protocol as they listen to what the person actually wants and does not want.
We need to work for culture change both in the medical professions and institutions, but also in communities and families to make it feel more normal to think about and record our wishes, preferences and decisions as we face life limiting illness.
All of us emphasised the need to foreground people’s choice and agency in this transformation work – in neighbourhoods, in the MSF, in the development of the SPR – whether the evidence for advance care planning comes up to the standard of a randomised control trial or not. These changes are not going to come about if we treat people like they do not have agency, like they need to be told by professionals what the right thing to do now is. People’s ambition and agency is what will help make the change happen.
But most importantly, I feel we realised and made real that it’s us, people from different sectors and with different networks and assets who, only together, can make the changes happen that we all want to see.
System change is complicated because everything needs to change everywhere: medical education and training, organisational policies, support for both professionals, patients and their families to have better conversations, the connectivity of data and records, the reliability of community services. But system change therefore also means that we can start in all these places to affect change. Start anywhere, and go everywhere.
We will share insights from the valuable conversation at this webinar with the policy teams of the MSF, neighbourhood health and the SPR. We will then also respond to what some attendees asked – to make the policy calls come alive and feel practical for practitioners – by organising a second webinar, early in 2027. This will focus on best practice examples, and tangible steps professionals, teams and providers can take to ensure they can better hear and promptly act on the wishes of people to have deaths aligned with what matters to them.
If not us, then who, if not now, then when?