The Culture of Illness

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All belief systems have constructed explanations for illness, its management and those qualified to give opinions on them. UK healthcare is provided on the back of ‘evidence-based’ medicine; a highly educated system that the layperson may struggle to understand, and some individuals refuse to comply with.

A study on individuals with no formal education showed that treatment compliance related directly to their understanding of how medicines and the body worked.

Patient education is a basic principle that seems to be overlooked amongst the glitz and glamour of ionizing radiation, genetic testing, gel electrophoresis and laboratory testing prevalent in the Western world. We might consider blood tests routine and not bat an eyelid at someone irradiating our thoraxes but how many people really understand what happens to the results? We undergo the procedure, the results go off to some sort of medical fairyland and we get a letter or phone call to say “come back” or “all clear”. We trust these invisible well-wishers to know what they are talking about, even though these humans have never seen us, spoken to us or examined us. We proffer up tourniquet-ed veins like plump, sacrificial lambs and wait to see if this has pleased our gods.

This probably seems completely bonkers to half the world’s population; attributing everything from sudden death to yellow skin to seizures to molecules smaller than a piece of dust. Moreover this attribution comes at the recommendation of a faceless human likely hundreds of miles away who doesn’t even know your name. There might be a blue pill at breakfast along with 6 different pills at lunch, along with a pink one and a half at dinner and then another once a week on a Tuesday. Some are to be taken with food, some before and some after, and some must be skipped after another faceless command following a blood test. I’ve met tens if not hundreds of patients who cannot name all their medication and who do not know what it’s for, dementia or no dementia.

“Nah, not sure what that little one there is for, take him sometimes but don’t feel any different with or without…”

My toes curl into the floor and I look heavenwards as I look at the ophthalmology referral letter on the screen, the half-full box of statins on the table in front of me, and the nice old man who is going blind because his diabetes is out of control and he isn’t taking the drugs that fix it. The frequency of uncontrolled diabetics I saw in general practice over the course of just 6 weeks made me seethe. The end result is definitively heart and kidney failure as surely as smoking causes lung cancer – but none of these patients understood how or why. I think they thought we were just scaremongering. One such reluctant patient only started taking his insulin because he was ‘itching like mad’ all over and agreed to try it as a last resort (it helped) despite 18 months worth of borderline kidney function tests and a dying optic nerve (he said that was part of normal aging; he was barely past 50).

Two conversations over Christmas also made me think about the lack of communication between doctors and patients. One lovely lady had back pain “the doctor was rubbish, he just said it was muscular, just gave me painkillers and exercises to do.” Well, most back pain at her age is muscular. The alternatives are slipped discs (treatment also painkiller and physio), cancer metastases (no other risk factors or symptoms in this lady), TB abscess in the spine (no other symptoms), an aortic aneurism (rare in her age, very severe, no risk factors, different kind of pain), osteoporotic vertebral collapse (she’d had her calcium checked), a tumour (no other symptoms) and other vanishingly rare alternatives. Muscular back pain takes months to go away and lo and behold, pain relief and gentle exercise is key. Once I’d explained this, she was happy, and said she’d just felt fobbed off with the muscular excuse as her GP hadn’t really asked any questions or explained the diagnosis. She wanted some sort of ‘test’. I think this a) is the reason private healthcare does so well, they do every ‘test’ under the sun b) sums up the modern attitude towards medicine; doctors are just imperfect humans and the laboratory knows all. The latter is untrue as no test result is 100% reliable and some are useless without the clinical picture. For example a positive D-dimer test result if a doctor suspects a pulmonary embolism means a pulmonary embolism, and it is an emergency, and a positive D-dimer test with no symptoms barely raises an eyebrow. If looking at test results was all that made a decent physician we would not require 6 years of medical school, my bank account would be considerably less malnourished and I wouldn’t have to embarrass myself trying to use a tendon hammer.

The other example is the ever present request for antibiotics when one has a cold. I saw five patients in 6 weeks adamant the doctor was just being cruel by withholding the proper treatment (and doing what? Stockpiling/selling off the antibiotics? Enjoying their pain?) Unfortunately colds are viral, and unlike bacterial infections, do not respond to antibiotics, because antibiotics kill only bacteria by cunningly damaging parts of their walls, membranes or DNA. You use a stake in the heart for a vampire and a silver bullet for a werewolf: different villain, different method of execution. Most patients are happy after a little bit of explanation and what’s more, will not then come back and ask next time or frisk all the GPs in the area for unnecessary antibiotics. When there’s scope for it, antibiotic resistance should be explained, as it is partly wily-nily prescribing of antibiotics that landed us with drug resistant bacteria in the first place.

The key take-home message? Doctors should put more effort into explanations and patients should take more time to try and understand their illness. Patient satisfaction seems to be higher when both patient and doctor agree on the underlying cause and its treatment. In Amazonian tribes this may well be evil spirits requiring an exorcism, in the UK it may be a rapidly growing lump requiring excision. Try explaining to the tribesperson why you’re attacking them with a scalpel and to the Brit why you’re painting them with chicken blood and you might start to understand just why so many people refuse to try or to maintain highly-developed industrialised treatments that seem to be utterly irrelevant to them.

Humans are for the most part rationalists. If it makes sense; it’s good.

So whether it’s a microscopic germ or the whim of an omnipotent deity, understanding illness means beating illness, and it’s increasingly important to remember that as technology becomes more intricate, our populations more culturally diverse, and our newspapers spew various medical untruths into the public eye.

IMAGE: My name’s axel, flickr.

 

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