Heroes Not Zombies

In Eric Cassell’s “The Nature of Clinical Medicine”, he postulates that a key problem with Western Medicine is the focus on disease, at the expense of seeing, hearing and understanding the person who may, or may not, have the disease. At Medical School I was taught it was very bad practice to refer to “the gall bladder in bed 3” or to say “I admitted a case of pancreatitis last night”. Despite that we continue to think of disease as paramount in patient care, and we even create our health care services around the diagnosis and “management” of disease. Whole protocols of procedures are created, distributed and enforced around the concept of diseaes. Doctors and nurses are told what to do with a patient with disease X on the basis of “the best evidence”, where “the best evidence” refers to group studies which seek to “control for” individual factors – a process which prioritises the disease over the individual experience of it.

Eric Cassell enumerates “8 problems with using disease language”.

Disease names, for example, coronary heart disease or carcinoma of the breast, wrongly imply that a disease is a concrete thing (as opposed to an abstract concept) that can be found separate from the patient in whom it is found.

I read the phrase about disease being a concept, not a concrete thing, many years ago, and it had a big effect on me. Disease is exactly that – a concept. It’s a pattern of change which we name. Yet how many people, patients or health care professionals, think of a disease as being a thing? If you look at recent slogans used in health care, and in charity campaigns you’ll see the kind of thing. They are full of war metaphors about fighting this, beating that, kicking cancer’s butt, and so on. 

Disease names, for example, renal cell carcinoma or ulcerative colitis, incorrectly imply that the disease and its behavior are independent of the persons in whom they are found.

There are NO diseases which exist outside of people (or other living organisms). A disease is ALWAYS found in the context and the environment of the person who is suffering. 

Disease names, for example, lupus erythematosis or chronic obstructive pulmonary disease, mislead the unwary into believing that the name refers to one thing whose manifestations in individual patients are more alike than dissimilar. Just as the word tree refers to a class of things whose members are more alike than not, when, unless one wants to use trees or their wood, their variations are more important than their similarities.

What does every patient who attends an asthma clinic have in common? Asthma? How similar does that make them? Is this the most important fact to know about this person who is attending today? It’s individual differences, not the similarities, which are the most important.

Disease names, for example, multiple sclerosis or pneumococcal pneumonia, fool the unsuspecting into believing that what is referred to is a static entity, like the Bible, the Statue of Liberty, or the map of the New York City subways, rather than a constantly unfolding process that is never the same from moment to moment. The history of disease concepts depended on and furthered the classic separation of structure and function in which abnormal function was believed to follow from abnormalities in structure. This distinction seems to have been derived from the idea of form (which goes back to the Greeks) and its consequences that loomed large in 17th- and 18th-century medicine (King, 1978). The hard and fast distinction between structure and function itself is invalid. Structure is merely slower function, in that it changes at a lesser pace than the process called function—put in mind how bony structure changes in response to trauma or age so that it continues to perform its original function. Even the Statue of Liberty and the Parthenon are constantly changing.

As best I can understand, change is the nature of reality. There are no static entities. Even the ones which look static, are just changing more slowly, or less perceptibly. As Cassell says, “structure is merely slower function”.

Having named a disease within the patient, for example, diabetes mellitus or metastatic adenocarcinoma of the lung, physicians may be fooled into believing that they know what the matter is at this particular time and why. The disease may be the sole underlying reason why the patient is sick, but more often other factors—physical, social, or psychological (or all three)—have been crucial in the generation of the details of the illness and its losses of function (Cassell, 1979).

This is a common error. Just because an abnormal reading is found, that does not necessarily mean the explanation for the patient’s suffering has been found. For example, it has been clearly shown that there is no direct linear relationship between a lesion and the pain a patient is experiencing. Pain can change irrespective of the findings in the MRI scanner.

Disease names, for example, amyotrophic lateral sclerosis and psoriasis, inadvertently cause physicians to fall back on definitions of disease that are now accepted as outmoded because they fail to provide an adequate basis for treating the sick.

Disease names can, and do, change as we develop our understanding.

Using disease nomenclature to describe human sickness encourages the belief that only research into (molecular) mechanisms of diseases holds promise for understanding and treating human sickness.

You’ve probably encountered one of the ways in which “patient centred” is being used – pharmacogenomics. The idea that as long as we find not just the genetic code associated with a particular disease, but the genetic codes which seem to indicate responsiveness to certain drugs, then all we need is the genetic code. This isn’t to say that molecular or genetic research is not of value. It’s just not enough.

Finally, focusing on naming the disease takes attention away from the sick person.

Ultimately, this is Eric Cassell’s main message, and if only we made this the foundation principle of health care then we might have better medical education, more useful research, more effective treatments, and even health care organisations constructed around people, not diseases and drugs.