More than two decades ago, an elderly gentleman in my wife’s family asked me if medicine will be able to cure HIV quickly. Back then, the AIDS epidemic was at its peak and was receiving tremendous attention and research funds. I was a trainee at the time and hesitated, not just because I was unsure of the answer, but also because I knew that the prober was a staunch believer in science and any lack of optimism in my response would be construed as lack of belief in the very science that I hoped to practice for the rest of my life. Nevertheless, I responded honestly and stated that it will take a lot to curb the mutating virus.
Today, about 30 years after I entered medical school, I am even more convinced about the shortcomings of medicine. I experience these at close quarters on a daily basis, both in practice and in research.
These deficits are exemplified by a survey a colleague and I undertook and published in the Journal of Child Neurology in 2013. The survey was aimed at understanding the variability of approach to managing a relatively common condition called childhood absence epilepsy. Epilepsy affects about 0.5-1% of all children and childhood absence epilepsy accounts for about 10% of all pediatric epilepsies. As the name suggests, the condition is characterised by unresponsiveness for a few seconds. These seizures can occur 50-100 times a day if untreated.
Just prior to our survey, a government-funded seminal study had compared three most-effective drugs head-to-head and come up with very specific recommendations. The study design and methodology were scientific and most epilepsy centres of repute around the US ensured a seamless conduct of research. It also lacked any conflict of interest since the patents for the drugs that were being tested had already expired. Not surprisingly, the endeavour was hailed as monumental. The New England Journal of Medicine published the results.
My colleague and I instinctively knew that not everyone in the US treated this epilepsy with the protocol that the study employed. But even we were not ready for what the licensed, board-certified child neurologists in practice around the US had to say.
After a medication is started to treat this epilepsy, typically the assessment of seizure-control is evaluated in three stages. First, parental feedback is valuable and if they are still noticing seizures then it is obvious that more aggressive treatment is necessary. Second, children are asked to hyperventilate in office and, this being a provocation, can induce seizure when otherwise the epilepsy seems to be under complete control. This by no means is a foolproof test and high percentage of false-positive and false-negatives have been documented even when the assessor was an epilepsy expert.
Finally, an electroencephalogram (EEG), which is used for initial diagnosis, is repeated to ensure that it is completely normal both at baseline and after hyperventilation. This third method is the best measure of seizure-control and was utilised for the seminal study. The follow-up EEG becomes even more important if the child is not performing well in school.
Our survey results showed that almost 43% of those surveyed did not utilise a follow-up EEG to assess seizure control. Moreover, some of those who obtained a repeat EEG did not adjust medications even if the test was abnormal. Interestingly, our survey also showed that a significant minority did not even utilise hyperventilation to assess seizure-control.
What explains this variability in practice and the reluctance to follow the protocol of seminal research? There are several possibilities.
The study showed that the best medication for this epilepsy fails in about 55% patients at one year and the second-best medication, though efficacious, causes side effects that lead to discontinuation in 33%. The study also noted that neuro-attentional problems persisted even if patients had complete control of seizures. The dictum “statistics don’t lie” is quoted often by medical researchers but an insightful clinician knows that research data lumps individuals together to come up with conclusions. However, these individuals often behave uniquely and that extrapolation of study results needs improvisation on a case-by-case basis. This is where the art of medicine comes to play.
Vinod Khosla infamously once called modern medicine witchcraft. He stunned an audience full of doctors into silence at innovations in health summit in San Francisco. He further stated that 80% doctors will soon be replaced by technology and the resultant healthcare will be superior.
What Khosla discounted in his assessment of medicine is the unpredictability of the human body and the art necessary to make the best of the situation. The technological advancements and bludgeoning research will continue to improve our ability to diagnose and treat. However, I do not anticipate that the unpredictability aspect will be taken care of anytime soon. Moreover, medicine faces new challenges on an almost daily basis with lifestyle changes while many age-old diseases remain poorly addressed. The pace of advancement lags far behind as things stand now. Unfortunately, I am pessimistic about the science that I have chosen to practice all my life. But I remain very bullish on the art.
Jay Desai is a neurologist.