Bill Love reflects on how organisations view and support living at the end of life.
Many of us will face times in our lives when we reflect on the things that we want to do before we die. I’ve twice found myself thinking seriously about my bucket list. The first time was ten years ago while waiting to find out if an oncologist had been skillful with his scalpel (he had). The second was over the last couple of months while waiting to be cleared in a cancer diagnosis programme.
Bucket lists aren’t really about dying, they are about doing some important living.
Whilst some bucket lists need fast thinking, others may turn out not to be needed for a while but instead have offered some great life goals. Talking to friends who have been in a similar position it seems that lists tend not to be about the big gestures beloved by sentimental films but rather about places to see, experiences to be had, people to be reconnected with, books to be reread, etc .
Whilst waiting, I found myself having similar conversations with people I greatly respect who run support services to understand their experiences of helping people have and fulfil their bucket lists. To my surprise, most had none.
Digging deeper it seems that the question just isn’t asked. Reflecting on why not, I don’t think that these organisations are uncaring nor have they discussed it and identified it as too challenging, expensive or risky. I simply think it’s that ‘the system’ (planning, commissioning, providing, quality checking) doesn’t have the same aspirations for people receiving care as for the wider community.
What services do seem to do is make and deliver end of life care plans that keep many people safe and comfortable. For me, this wouldn’t be enough. This addresses the function of dying rather doing some last bits of living.
So, my challenge to the providers and commissioners of support services is to ask what is in place to ensure that when people get a difficult diagnosis they have the opportunity to think about and undertake some important last bits of living?
This isn’t about developing a soul destroying ‘person centred bucket list tool kit’? It’s probably about a bonfire of paperwork, permission and risk assessments. It’s definitely about ensuring that the right people ask questions, listen and commit to the person.
Thinking about this raises a second question (indulge me, I don’t write blogs that often) that’s aimed at the wider ‘system’ and is more difficult. And that is to wonder why we would wait until someone is dying before we support them to have a really great life?