Medically unexplained symptoms
In 2004 I spent 8 months working in a rural clinic in North West Afghanistan supervising 2 local doctors and seeing up to 100 patients a day in a tiny concrete room. The area was desperately poor. There was no clean drinking water, sanitation or electricity. Approximately 3 quarters of children were chronically malnourished, almost half died before the age of 5 and the chance of dying from the complications of childbirth was over a thousand times that of dying from childbirth in this country. Malaria, typhoid, dysentery and tuberculosis were seen daily. Among the misfits, missionaries and mercenaries that work in places like Afghanistan are a fair few doctors who believe that in places with such overwhelming levels of poverty and disease, doctors must spend all their time dealing with genuinely sick patients instead of the chronically anxious, so called ‘worried-well’ that demanded their attention at home.
Imagine their surprise and disappointment then to discover that up to half the patients who attended the clinic had ‘medically unexplained symptoms’. Studies of primary and secondary care in the UK have shown that between 40 and 60 percent of patients have medically unexplained symptoms. This is not to say that their symptoms cannot be explained; a 23year old mother of 3 surviving children who has seen 3 of her own children die in infancy, who lives in a cramped, smoke filled mud house with the sound of constant hungry crying, whose husband is 3 times her age and whose parents were both killed in the war that constantly threatens to reignite, is bound to suffer, and given the presence of a doctor whose purpose is to relieve suffering, it should be of no surprise that she comes to see what he has to offer. It is usually a surprise that the proportion of people in whom there is no medical explanation is the same in such different places as rural Afghanistan and urban England. The history of medicine is interesting. The ancestors of modern doctors were priests, shamen, sorcerers and healers. They had not developed our biomedical model to categorise illnesses and so were far less likely to deny suffering on the grounds that it could not be explained.
The risk of reducing suffering and the causes of suffering to a biomedical model is that only those that fit the model are legitimized. And when health is commodified, only what is legitimized is paid for, and when healthcare is subject to the market, only what is paid for gets cared for.
Science deals in the general, it is a process of sorting the world into categories such as those types of suffering that can be medically defined, for example; what may be divided into infections, growths and degenerative processes. Art deals in the specific, the personal subjective nature of suffering; the library is a better place to study human suffering than the laboratory.
Medicine is art guided by science and doctors are presented with the subjective experience of suffering and the measurable effects of disease every day. We separate what we can of the illness from the patient:
“On a psychological level recognition means support. As soon as we are ill we fear that our illness is unique. We argue with ourselves and rationalise, but a ghost of the fear remains. And it remains for a very good reason. The illness, is an as yet undefined force, is a potential threat to our very being and we are bound to be highly conscious of the uniqueness of that being. The illness, in other words shares in our own uniqueness. By fearing its threat, we embrace it and make it specially our own. That is why patients are inordinately relieved when doctors give their complaint a name. The name may mean very little to them; they may understand nothing of what it signifies; but because it has a name; it has an independent existence from them. They can now struggle against it. To have a complaint recognised, that is to say defined, limited and depersonalised, is to be made stronger.” John Berger: A Fortunate Man
Naming the illness doesn’t make the patient disappear, and in most cases the relief described above is short-lived; the depression becomes the patient’s exhaustion, loss of libido and insomnia; the cancer their loss of career, hair and fertility. The 50 percent or more of illnesses that cannot be named and the degenerative diseases of our time cannot be cured or separated from the patients’ experience of life lived. A great deal of what we do was described by Voltaire; ‘The art of medicine consists of amusing the patient while nature cures the disease’. The art of medicine is not what we do once our science has been tried and found wanting, nor is it mere amusement; as a result of the therapeutic relationship that develops between a carer (be they doctor, nurse or other) and a patient, we develop trust, relieve anxiety, make sense of fear, anger, hopelessness, frustration, sorrow, guilt, and shame and support. And that is how we care for our patients throughout their suffering.
Kant, Human dignity and the subjective nature of suffering
One hundred years after Voltaire, Emmanuel Kant defined dignity as the intrinsic worth of a person. Human beings, unlike things, have a kind of intrinsic worth that should be respected. Unlike relative worth which has a value which may be exchanged for something else, intrinsic worth can have no equivalent. A commodity has relative worth, a person has intrinsic worth.
Respect for human dignity requires that we cannot generalize a patient’s subjective experience. Respect for dignity also means that one should “Act in such a way that you treat humanity, whether in your own person or in the person of any other, always at the same time as an end and never merely as a means to an end”. To treat others as beings who have ends is to be motivated by their ends as well as our own, so that their interests become our own. The logical conclusion from this is that we have a duty to help and care for others.
Commercial healthcare
When healthcare is commercialized, human health is commodified; that is, people are broken down into diagnostic categories and biological parameters that can be quantified, i.e. given a relative worth which is given a financial value. So doctors are paid for reductions in the weight or blood pressure of their patients, for diagnoses made and for tests carried out. The relief of suffering becomes a secondary end, achievable only if it occurs as a consequence of treating the illness. Many treatments, such as drugs to treat hypertension and high cholesterol, screening for breast cancer and immunisations cause as well as relieve suffering. Though their ultimate aim is to prevent future suffering, the markets for preventative services (screening, statins and so on) are greater than those for curative services because far greater proportions of the population are ‘at risk’. This results in a shift of emphasis from cure to prevention, i.e. from caring for the ill, towards medicating the healthy[1].
According to the logic of capitalism, only commodities count because only they can be counted. When a patient comes to see me I am reminded by my computer of a list of biometric data that I need to collect. If I fail to collect the data my practice will lose money. You may wish to discuss your failing memory or the side effects of your chemotherapy, but we’re only going to get paid for measuring commodities, not for listening. Listening is too hard to measure, but not time; if I keep you waiting I’ll be fined, and if I give you the time you need I’ll be fined for keeping the next patient waiting.
For Kant, an act should be done for the sake of duty. It must be done out of a concern for what is morally right; not out of some self serving motive. It must be done for what is right for the patient, not what pays.
[1] Disease mongering is the increasingly widespread practice of widening disease parameters and thereby extending treatment thresholds ‘in order to expand markets for those who sell and deliver treatment”. Selling Sickness: The Pharmaceutical Industry and Disease Mongering. Ray Moynihan, Iona Heath, David Henry. BMJ 2002;324:886-891
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