Western society has a digital mentality; digitality is everywhere. What is not digital, simply does not exist. This derives from the “calculative mindset”, for which only what has a name – and can either be calculated in money or can be rationally described – has a right to citizenship. This is evident in medicine: only mental diseases that are in the DSM exist, because they have a name, the others don’t; only the causes of pain described in some textbook exist, the others can wait. In other words, healthcare is done “for the healthy”. I use this term as a paradox, meaning for “healthy” those who have a disease, but it is a “normal” disease, namely the adult, autonomous and self-sufficient patients: the frailest, those who cannot be categorised, and those who exceed the norm or have rare and uneconomic diseases should wait. This is the consequence of calculative thinking: who is not categorizable, and who cannot claim and describe his/her pain is kept silent. What would happen if, once in a while, we’d dare make some unusual effort, taking some further commitment toward those patients and situations that are strange, difficult, hard to categorize? Here I propose to open doctors’ job to a new term: medical exuberance.
Example: Pain exists only for the healthy
Pain is something that cannot be understood, or treated in rational terms, as you can do for other sensations like a smell or for something you have seen. It cannot be described or calculated: it is just “felt”. Yes, we can measure it, but we also are overwhelmed by pain, that remains a mystery even to our eyes. You cannot understand pain for four reasons. 1) it is subjective, it is indefinite, if you try to say what pain is you cannot, even though you are sure you know it. It is the same of talking of time or of space: if you do not reflect, you are sure of knowing what they are; if you try to define them, you remain speechless. 2) it is a sort of nightmare: it is the only sensation that cannot be recreated with the mind, unlike a face or a smell. 3) It is scary: it is highly irrational, it has no moral explanation, it is unjust, unfair. 4) It is a privilege: pain is the pain of those who can speak, self-determine and self-manage. Pain for medicine exists only for the healthy, healthcare only exists for the healthy, for those whose disease is within a describable range. Pain exists only for those who can be described by words, or for those who can describe it. Only two years ago, the IASP came to change the definition of the word pain, including at last those who cannot describe their body or who also cannot speak. Up to date, these categories of people were officially excluded from the definition of pain: babies, the mentally disabled or subjects in coma.
Example: The child does not exist because he/she is not measurable
Children have the same destiny as pain: they cannot be dealt with in rational terms, neither their feelings are measurable. Adults have measurable thoughts, predictable reactions, they use reason, whose semantic origin is the word ratio, that is measure; on the converse, children do not measure, they are totally irrational. Even the adolescent who appears to be a semi-adult is still irrational due to the absence of the prefrontal cortex. Children do not measure and are not measurable: for them a bottle is not just a bottle as it is for an adult, but also a cannon, a sword; his little brother is his little brother, but also a toy, a bug, a pillow. So, doctors do not know how to recognize children’s needs, their pain, because they use to recognize well-defined, measurable diseases and symptoms.: “he always screams so much”, “anyway it will pass” “anyway, he will not remember”, “as long as he does not sue me, all is under control”. This has led to prolonged diseases and to deaths, as pointed out at the British Parliament by a non-profit organisation. All this is calculative thinking. Girls’ mental anorexia which is an affective disorder confused with a disorder of appetite; children’s hyperactivity disorders confused with neurologic diseases just because they are not measurable.
Healthcare for the healthy
From these examples, we see that what cannot be quantified or counted is simply ignored, as is the case with people with mental disabilities, described as “invisible” to the health system. To be curable it is necessary to be “normal” that is, to be able to be describable and classifiable, or to be able to describe and classify oneself. Those who do not fall into these categories – e.g., those affected by rare diseases – must begin a journey like that of Ulysses between one specialist and another to arrive – perhaps – at a diagnosis. Most doctors and nurses fall within this mindset: who is within their expertise is welcome, who is “strange” is commonly referred to some other specialist: most treat only those they previously know they can decode. In a society ruled by the principle of performance, they are requested only to behave well in their role, within their expertise, and to not dare to adventure in something beyond their strict job protocols.
It is therefore necessary to abandon a calculative medicine and move on to a medicine of exuberance. Exuberance does not mean cheerfulness or optimism, but etymologically means “giving more than just the milk that comes out of the breast”. Because children want to thrive, but do not only want food, as Harry Harlow’s experiments demonstrated; they want relationships: they do not live without the attachment with their parents. Similarly, “Medicine of exuberance” means not only giving the drug, but creating an architecture of relationships, of hospital environment, of time dedicated to the sick, which bases the treatment of sickness on a serene ground, fertile for the use of pain relievers. A holistic approach to the patient’s care is needed, as I recently illustrated: doctors should manage both drugs and hospital architecture, psychology and sociology. And should stand by those patients who cannot claim their pain and their rights, those at the margin of current medicine. Nowadays this rarely happens: doctors are reduced to their role and their strict office.
Calculative medicine is the “medicine of the healthy”, but it is the medicine of the past. It is done for the average adult. It is not the medicine of those who are strange, who are different; the disabled, the child, the rare disease. Western healthcare is not inclusive. It is an “autocratic” medicine, namely a medicine of those who are autonomous, free of speaking, self-describing. Most people don’t have these features. We’d rather have a medicine of exuberance.
Carlo V Bellieni, MD is an Associate Professor of Pediatrics at the University of Siena, Italy.