The most formidable is widespread enthusiasm among patients and their concerned, to understand disease and its various management options.
It’s been more than 35 years since I started practising medicine. Three and a half decades ago, medicine was a fine mix of “science and art”. Those were the days when specific knowledge about ailments was insufficient but confidence about prescription of therapy was high. The contemporary situation is rather reverse—knowledge about disease is high but confidence about suggesting various forms of treatments is, at best, tentative.
What’s the reason for this paradoxical tentativeness despite increasing knowledge?
The reason for this is multifactorial. In my opinion three major factors contribute. The first is advancement of knowledge and understanding that any disease in a human being is different from another similar case. Medical progress over the past few decades has predominantly been towards understanding newer mechanisms of disease and newer ways to diagnose them, resulting in a more targeted approach to therapy. This has replaced a cohort like treatment followed during times gone by, when all patients with one disease could be treated in a similar fashion. Now, particularly in the field of oncology and immunology, presence or absence of disease specific markers and genes determine how a patient will get treated.
The second contributing factor is the rapid augmentation in scientific information and its direct dissemination into public domain. We all observed this during the Covid pandemic. There was an era when scientific progress would follow the staid path of case reports, scientific trials (including randomized controlled trials), recommendations by specific society and finally textbook information. Now, a study is available on all forms of social media, for all to read—even before domain experts have had time to assimilate and understand the relevance of a particular scientific finding. This, of course leads to hesitation in recommendation of treatment strategies, because one never knows which new study will contradict your recommendations.
A third and an equally potent, and perhaps the most formidable factor, is widespread enthusiasm among patients and their concerned, to understand disease and its various management options. While this leads to a more meaningful discussion between a doctor and his patient, it also results in doctors being questioned —sometimes rightly so.
This is where I want to introduce Hearty Marty (HM)—the ever-so-“hungry for knowledge” kind of patient. He is well-informed and well-read, tries to understand his illness and generally a delight to interact with. For a “willing to learn and get corrected” doctor like me, HM compels you to educate oneself a bit more, thereby hugely contributing to self-growth.
So what’s wrong with being a Hearty Marty?
Absolutely nothing! Hearty Marty is a good thing to be. It’s only when Hearty Marty (HM) becomes Opinionated Hearty Marty Smarty (OHMS) that things tend to get strained. In any field of life, including medicine, information is good, knowledge is better but preconceived opinions are not.
Unfortunately, as happens with most fields in our lives, opinionated information is usually due to a flaw in both the source of information as well as methodology of assimilation.
What’s the usual source of information for patients?
We all like to listen to stories. Nothing interests a human mind more than a good story. A story about a single old woman rendered homeless in an ongoing war, is likely make a far greater impression than details about the ammunition used, numbers of dead or financial implications of this war. Data does not move a human mind as much as a story does. Stories tend to stay with us much longer.
Similarly, patients like to listen to stories and life experiences. And what’s the commonest source of stories for them? Social media and personal experiences of family and friends.
Definitely, there’s nothing wrong in gathering information from the social media or social contacts. What’s wrong is relying on them as your only source? While individual experiences serve a lesson in awareness—and maybe a cautionary purpose—they cannot be deemed as knowledge. They are anecdotal and personal experiences. They should not be extrapolated to the general population. Also, because human beings generally tend to recount unfavourable experiences more clearly than favourable outcomes, they have a strong negative bias.
So what one needs is a clear, objective, cold, logical and third party statement of facts (and data) and not individual experiences.
HOW TO NAVIGATE THE VAST SEA OF INFORMATION
The internet of all things comes with huge advantages. It has all the answers, you must only know how to ask the right question.
Many hospitals and universities in the West have disease specific patient education pages. Many hospitals in our country are also adopting this and I’m sure, in years to come, reliable and contextual information will be available at these sites. I often encourage my patients to search such sites and look for the right answers. Additionally, if your query does not figure in the list of pre-answered questions, the websites often have “ask an expert” kind of a facility.
Another source for obtaining correct information is consulting another domain expert. This is now possible with a formal video consultation—booked with a prior appointment through a hospital website. Most such consultations offer the ease of uploading relevant reports and prescriptions. In order to make it a meaningful interaction, I also advise patients that seeking a second opinion is not a debate, where one opinion has to win. The idea is to arrive at a consultative and conclusive line of management and the best way forward in a particular case, rather than to look for differences of opinion. Towards that end, it is often a good idea to inform the doctor being consulted that the purpose of a consultation is to seek a second opinion. I also like to advice patients to note specific written questions before seeking such a consultation, so that responses can be more specific. When I am the one being consulted, I make sure to enquire the purpose of a video consultation right at the beginning.
GET TO KNOW YOUR DISEASE, ASK RIGHT QUESTIONS
During consultations, I encounter individuals who have garnered information (and pre-conceived notions) about a disease that are irrelevant for them. This also applies to treatment strategies, where patients gather information and fear complications of procedures and surgeries—which are not even intended, applicable or planned for them.
Hence, as an individual, it is extremely important to “Know Thyself”. Understanding one’s ailment in as much detail as possible—is the first step before adopting a line of management. This will help in deciding the correct approach to a problem rather than being judgy about an individual or an institution offering a specific line of treatment
Only after one has gathered enough information about one’s own disease can one ask the right and relevant questions from an expert.
STATISTICS ARE A SCIENTIST’S PERSPECTIVE
During counselling, patients often ask me about complication rates, chances of survival, side effects etc. It is my usual practice to first elucidate and enumerate the complication rates and then qualify the information by clearly stating that these figures are from a doctors’ perspective. When I see 100 patients of a particular disease or perform 100 procedures of the same type, I am likely to encounter a certain percentage of complications. From a patient’s perspective, it is often an all-or-none rule. In an unfortunate event of a complication happening in a particular patient or during a particular procedure, the frequency of this event in a general group of patients is irrelevant. So, patients while being armed with figures and statistics, must always be made to understand that the relative one-sided dimension of this particular information.
A professional journey in medicine is often a humbling experience of self-awareness (awakening) about one’s own paltriness of complete knowledge. As one progresses down the path from MBBS (graduation) to specialization (Doctor in Medicine) and finally the academic summit of super-specialization (Doctorate of Medicine), a realization dawns that while knowledge and experience advances manifold, it is still minuscule relative to the whole. Nowhere, as in medicine, could Steve Jobs have been more appropriate—it always pays to “stay hungry, stay foolish”.
Dr Hemant Madan is an interventional cardiologist.