Dying well: what works
This blog was originally published on Dyingwell.uk, a website owned by Clair Fisher.
In Clair’s words: “Dying Well was my retirement project. A space for me to document my personal journey, to explore the evidence around wellbeing in terminal illness and test out some of the theories.”
I am a self confessed policy geek; my whole professional career has been about developing public policy. I love research, information, evaluation. It makes complete sense to me on both a personal and professional level that if we are going to make an intervention we should do something that we know will work. Where we innovate and experiment we should b e designing in the collection of data that will aid future decisions.
So when I was diagnosed with stage 4 bowel cancer in 2018 I wanted to know about the treatments I was receiving and how I could live well. While there is a huge research base for the clinical interventions, it became apparent very quickly that there was much less emphasis on and evidence about wellbeing. A terminal diagnosis impacts every area of your life; relationships, finances, career, self esteem. It places a huge burden on you as patient expected to project manage your own care, and on those around you as they struggle with their own emotions and the extra burden of care.
An approach that focuses solely on medical interventions and not on the holistic life is unrealistic. It’s deeply unhelpful for the individual and also from a public policy point of view.
Why aren’t wellbeing services focused at helping people live well routinely offered to those living with terminal diagnosis? Why is it that I can avail myself of various expensive surgeries and clinical trials at the taxpayers expense, but my hospice care has to be funded by a charity? We know how important work is for wellbeing so why are so many people with a terminal diagnosis immediately signed off work rather than being supported to continue if they want to?
My retirement project has been about exploring these questions personally, but also agitating for a change in public policy. So I was absolutely delighted this week when the Health Secretary Matt Hancock said at the All Parliamentary Group for Dying Well (no relation) that he would support a ‘What Works’ approach to Death and Dying.
This blog (based on my twitter thread) gives a bit of background about What Works Centres, why I wholeheartedly support this approach, and how we’ve already got started.
What Works Centres aim to improve the way government and other public sector organisations create, share and use (or ‘generate, translate and adopt’) high quality evidence in decision-making. They support more effective and efficient services across the public sector at national and local levels. There are currently nine What Works Centres covering various policy areas, based on the principle that good decision-making should be informed by the best available evidence.
For something that will literally affect us all end of life and palliative care has some significant evidence gaps.
We don’t even know how many people of working age are living with a terminal illness. What we measure matters, because it changes what we do. Without evidence and appropriate measures we can’t be sure that our interventions work, we can’t plan to deliver effective or sufficient services.
Where there are measures in palliative end of life care they don’t always capture quality of life in a way that could drive meaningful improvement in services. I believe a Wellbeing approach could really help us better integrate end of life and palliative care into the mainstream health system, and could deliver better patient outcomes.
In collaboration with the What Works Centre for Wellbeing we’ve made some baby steps towards getting this conversation going. In a series of conversations with Practitioners, Academics and Policy Professionals we’ve begun to build a network around this concept of ‘Dying Well’.
As Parliament begins to debate the future of the Health and Care system and as society confronts the reality of provision for those who are dying it matters more now than ever that we have robust evidence and meaningful measures. We’ve made a start at building the network and identifying where the gaps are. We’re excited about the possibility of a What Works approach being brought into this space and hope that Matt Hancock’s enthusiasm is matched with a commitment for funding.
Read more about how a wellbeing approach could improve end of life services in my blog for Marie Curie.