My colleagues in health seem to have been asking this question for many years and come up with numerous different statistical models for balancing quality of life against the cost of maintaining life.
It’s something I’ve always been interested in and lately, since I developed my own life limiting health condition, I have become not just an interested observer but someone with a stake in what quality of life versus the cost of keeping me alive means to me.
Sitting in the cancer day centre the other day with a raised temperature and pain on my right side exploring whether or not I was well enough to have treatment this week, brought the whole consideration of my quality of life to the fore. As one of the nurses said to me, ‘Jim this is all about your quality of life, if you need to take painkillers, it’s okay to take them.’
This led me to wonder whether quality of life versus the cost of maintaining life is the wrong way to be thinking about people with any form of long-term health condition or any health condition, disability or other need for support or treatment from social care and health.
Should we be driven by a values based approach to quality of life versus the cost of maintaining life? Merging the values of the person we are supporting with our own knowledge and experience about the things that contribute to making life worth living.
So what do I mean by this? I think there’s always a danger when we’re thinking about quality of life versus the cost of maintaining life, to assume that our values, attitudes and way of living are the ones that constitute good quality. And, that if somebody else’s values and attitudes don’t align with our own, than their quality of life isn’t as good as our’s.
A long time ago when I was working in a rural community, one of the people I used to regularly visit was an elderly man (let’s call him Bill) who lived in a tumbledown house in the middle of nowhere. Bill’s family had owned the house for generations, he had been born there and he had lived there all his life.
The house had running water from a nearby stream, a long drop toilet in the garden, a great big fireplace that seemed to be continually in use burning wood all year round and hundreds of resident cats that all lived indoors and were never allowed outside. This meant that the house was not only full of cats, but also full of cat poo. It was everywhere; on the dining table, on the chairs, on the floors… Honestly, there was nowhere you could sit or step without encountering cats and cat poo.
Now I’d been asked to visit Bill with the express instruction that I was to persuade him to move into sheltered housing. However in conversation with him, I discovered the joy Bill got from his life. It was evident that he loved living in the middle of nowhere surrounded by his cats. He earned enough each week through labouring jobs on local farms to live comfortably and he had no intention of changing his lifestyle.
Over time we built up a good relationship and I was able to persuade Bill to start using litter trays for his cats, to have mains water connected and to get a flushable toilet. I didn’t manage to persuade Bill to have a bath, but I did manage to persuade him to wash himself once a month, which he did outside with the use of a bucket.
You could argue that I was imposing my values on Bill. However, what I was trying to do was to help him to maintain his quality of life in a way that worked for him and at the same time prevent others who were breathing down my neck, from kicking Bill out of his home and moving him into sheltered accommodation. Bill’s, mine and other people’s values about what constituted a good quality of life didn’t match up and what we needed to do was to find compromises that enabled him to retain complete control over his destiny and stop him from being pushed around by different services. My goal was to help to improve Bill’s quality of life by reducing the risk of him becoming unwell or being evicted from his home and to enable Bill to live in the way that felt right for him.
Unfortunately when I moved on a couple of years later, the next person to support Bill didn’t see it in the same way. Very quickly Bill was pushed to move into sheltered housing and he was only allowed to take two of his cats with him. This didn’t work out well for Bill and his quality of life. Sadly within a year he had died.
So to bring this back to how we measure quality of life. I think we have to be very careful that we aren’t judging people’s quality of life by what matters to us rather than what matters to them. If we focus on imposing our own values individually or corporately on other people, chances are we aren’t improving their quality of life. We are disrespecting them and probably creating ill health for them rather than good health.
So for myself, my goals and quality of life have certainly changed in the last three years. Quality of life for me now is waking up every morning feeling well, at home and not in hospital. It’s going out cycling or to the gym and telling my consultant that the strength training I’m doing is starting to make me look quite buff haha (I swear she rolled her eyes at me:). It’s spending time on video calls in meetings and writing stuff that I hope is useful to people. It’s enjoying the electronic company of friends and colleagues around the world, spending time with my grandchildren who come round every day, (sometimes interrupting Teams meetings) whilst we work our way through my music collection and old episodes of Doctor Who together (missing out some of the really scary episodes when we’re watching with the six-year-old), discussing football with my eldest son and sharing music discoveries with my youngest son and still worrying about them (even though they’re adults) every time they go to football together. And very important to me, it’s spending time in the company of my life partner, my soulmate, my best friend and wife Alison.
I don’t get to travel much at the moment I do get to exercise when I’m well. I do miss seeing people face-to-face, but I also know that my quality of life is pretty damn good and I have much to thank those around me for for not imposing their values on me when thinking about quality of life decisions. We should all aim to do this in every aspect of our lives all of the time.
Jim thomas
April 2025
Leave a Reply