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.”
As part of Dying Matters week, I was invited to speak to the Dying Well network of the What Works Centre for Wellbeing on the theme of a ‘good place to die.’ In this blog I’m sharing the content of that presentation.
I was diagnosed with Stage 4 bowel cancer in Nov 2018 – I have spent the time since trying to live well. Dying Well is my retirement project. I am hugely grateful to the What Works Centre for Wellbeing for getting these conversations off the ground and for helping me to agitate for change around the use of wellbeing evidence to improve the lives of those, like me, living with terminal illness.
As a long term associate of the What Works Centre, I’ve been pondering throughout my cancer journey What Works as well at What Matters.
I have to say that the available evidence on wellbeing and terminal illness is incredibly thin. It’s hard to even get to the number of people of working age living with a terminal diagnosis. So the first step has to be to open up the conversations, to talk about dying – Dying Matters week is an important and valuable part of this. I’m delighted to be collaborating with the What Works Centre to really be able to understand what evidence we have, where the gaps and opportunities are – and to build a network of people who like us are keen to do more to use wellbeing evidence to improve the lives of people, like me, living with a terminal illness.
So today – I don’t have the evidence base yet, I just have some some personal thoughts around the theme of ‘a good place to die’.
Health, beyond diagnosis, matters.
Our physical environment matters.
Our support network and connections matter.
Let me say, briefly, a bit more about those 4 things and raise some questions for us to consider together. These are the sort of things that I imagine our Public Policy conversations around terminal illness might start thinking about when we start to look at this subject through a wellbeing lens.
1. Purpose: It has been hugely important for me to keep working, to be able to contribute. To be able to occupy a space in the world beyond my cancer diagnosis. To be able to function as a mum, a friend, a wife.
Why then is it that when people are diagnosed with a terminal illness there isn’t better support for them to keep working as long as they want to?
2. Health: Eating well & exercising has been so beneficial for my sense of wellbeing. I don’t pretend that these things can cure me, but by pushing myself towards greater post-operative mobilization I’ve managed to maintain a good quality of life. Diet has been a massive part of be managing the symptoms of my bowel cancer, but both exercise and diet have never been centre stage of my care plans. And NHS supported rehab seems to end at the point you can walk out of the hospital door.
Why aren’t the tired and tested wellbeing services more routinely offered to those living with terminal illness?
3. Physical Environment: We know that having easy access to green space, levels of crime, feeling safe, our sense of belonging, whether we can access key services and how satisfied we our with our housing – all these things impact our wellbeing. Terminally ill people may spend more time at home than most people. We might need help making some adjustments as our illness progresses, but I believe having a comfortable, happy and safe space to call home really matters. I’ve invested in a reclining chair, adapted my garden to be more manageable, redecorated my bedroom so it is a pleasant place to spend time in. I’ve considered whether there is space in my bedroom for a hospital style bed if I need one.
The Fire Service visit homes to check for Fire Alarms and other safety measures. Could wellbeing home visits become part of the community care package?
4. Our support network and connections matter: I have hugely valued being part of a church community, and am very fortunate in having many family members living close by. Having a community Hospice referral has also given me a sense of connection to a local care team who will be part of helping me to Die Well when the time comes.
Loneliness is a massive burden at any stage in life, but at end of life the practical and emotional burdens can become unmanageable. This speaks to the wider failings in our social care system, but the connections to ensure people are properly supported are too often missing, or patchy and reliant on charitable donations.
So my personal answer to a good place to die? For me, simply – Not in Hospital. I’ve worked hard to try to make sure that doesn’t happen – put my Advance Care Plan and Lasting Power of Attorney in Place. I have a copy of my DNR consent laminated close to the front door and another as copy in my hospital go bag.
It seems so sad to me that because of system failings and because of an unwillingness to have these important conversations early enough, too often people end up dying in hospital, when that’s the last place they want to be, and when the alternatives are so much less expensive and so much better for individual wellbeing. If it’s not too ambitious, I think a better handle on wellbeing evidence could be the key to change things for the better.