By Dr John Middleton
- Director of Public Health for Sandwell, West Midlands
- Vice president UK Faculty of Public Health
- Twitter: @doctorblooz
Dr Feelgood was the first band I knew before they were famous, before I bought the album that got them to number one. I did a support to Wilko Johnson at the Dog and Trumpet in Coventry in 1983. Our band does a passable ‘Down to the doctors’. The outstanding rockumentary ‘Oil City Confidential’ sparkles with Wilko’s anarchic narration.
So Wilko’s recent interview for Front Row was a bitter-sweet moment for me, another occasional collision of my personal and professional lives: the blues and public health. For the maestro of blues machine-gun guitar, the Canvey Island rocker, the blues legend of the Thames Delta was describing his reaction to being diagnosed with pancreatic cancer.
The cancer was inoperable. The specialist told him he had 9 or 10 months to live. With a carefree chuckle Wilco said: ‘with chemotherapy he might stretch it out to a year’.
Rejecting chemo and embarking on a farewell tour, his reaction to his condition was one of feeling ‘vividly alive, an elation of the spirit. Why didn’t I work this out before?’ The question he wanted the specialist to answer was ‘How long am I going to feel like this? If the cancer kicks in, I can’t go on stage – I don’t want to present a sorry spectacle’.
Wilko didn’t know it perhaps, but what he was describing in his predicament was the time trade-off analysis – enshrined in the reviled technocratic calculation of life and death, the Quality Adjusted Life Year, the ‘QALY’.
Bureaucrats, scientists and politicians pretend it is dispassionate. It contains the subjective value judgements of people who have been asked to say how much ‘normal’ life they would trade for different states of disease and disability, and by implication how much more value a treatment might have which preserves ‘normal’ life.
For health systems, the QALY makes decisions explicit and enables society to compare different treatments for different conditions. If money is spent on one patient it simply isn’t there to spend on another treatment which may be of more value to more people in terms of quality and length of life.
All health systems make these judgements – better to be an explicit rationing decision of government than a back-door, small-print insurance underwriter’s ruling.
The QALY can appear cold – a statistic with the tears washed off – but it embodies the pain or survival decisions individuals and their doctors need to reach. There are other considerations – risk and benefit, for instance. All powerful treatments carry risks; all drugs are poisons. The difference between the drug and the poison is the dose – the drug may work, but the side effect may kill.
In Wilko’s case the two months’ extra life gained might just be spent in a hospital bed. The side effects of some of the poisons are severe – a longer life with severe diarrhoea perhaps? Or a greatly shortened life through overwhelming blood poisoning? Life-saving wonder drugs are not all they seem.
Over 300 public health specialists are daily involved in life and death decisions on end of life high cost drugs. They are regularly vilified by the Daily Mail as faceless apparatchiks, denying patients their last chance of a life saving drug. NICE too, though it is the National Institute for Clinical Excellence is known only as the stopper of last-hope drugs. And yet these people are all trying to make sense of the time trade-off, and the risk-benefit, and the value of both. It is technical work but not without compassion. And yes, the family and friends test does get applied: I wouldn’t wish some of these treatments for anyone or me.
Wilko’s story personifies the public concern over too much treatment at the end of life, over-medicalisation to the detriment of the spirit. ‘The moment you are in is what matters – worrying about the future or regretting the past is a foolish waste of time. You can’t always be threatened with imminent death but it takes that to knock a bit of sense into our heads.’
Not everyone can express it, or live it, like the artist. Some though will feel emboldened to express the same desire, to not be sucked into the deadening experience of life preservation at all costs. Not every patient wants to spend their last days in the cold clinical confines of the treatment room, when they can be experiencing the beauty of the sky or the cold breeze on their cheeks.
How much has the danse macabre of end of life treatment denied people their chance for life enhancement at a time when they most need it? Sinking into dependency, professionally controlled, fuelled by hi-tech and Big Pharma interests? When they need to be reaffirming old friendships and loves, seeking reconciliation, redemption, elation, setting their affairs in order, saying their goodbyes?