At the beginning of March, the Rare Cancers patient platform organized ‘the week of rare cancers’. A collection of orphan diseases that together represent approximately 20 percent of all cancer cases in the Netherlands. According to research, one in three patients appears to be preceded by a long medical search. The platform suggests early academic reference. I see some misunderstandings.
Diagnostic delay is not yet a medical miss. We must be careful not to reinforce the already prevailing fear of this in both patient and doctor. That only leads to even more defensive medicine. And: more diagnostics – scans in the blind and extensive blood tests – does not guarantee a correct diagnosis.
Dealing with risks and weighing up against costs and interests is a key point in medicine. This professional attitude is under a magnifying glass in our society, where the inevitability of the phenomenon of risk seems to have become unacceptable. That is another underlying basis for the defensive medicine already mentioned. The definition of rare cancer (<0.1%) outlines the low probability of it. You could therefore call the fact that doctors make the diagnosis of rare cancer less often or more easily as a circular reasoning.
Finally, the patient platform’s wish for academic referral. That is also less simple than is suggested. After all, rare cancer is not a diagnosis, but an a-posterior constitution in an advanced diagnostic process for cancer. Centralization of care is desirable for rare conditions, whether malignant or not. And, of course, it can be referred once a rare cancer has been diagnosed or at a halting diagnostic process.
No misunderstanding: a delayed or missed diagnosis is a personal drama, especially in the case of a malignant disease. But it is not necessarily a medical malpractice or malpractice.
Dr. Jik Nihom, neurologist not practicing, Enschede
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