How is Suhana (name changed) now ?”, I asked, or rather typed a message, to Suhana’s daughter. ” Sir, she passed away a few days back and left for her heavenly abode “, came back her reply the next day. The reply shocked me, as I wasn’t expecting such an outcome. This especially after my conversation with Suhana’s daughter a month back. Suhana reportedly had a flare of her disease recently and was admitted to hospital for treatment. The conversation did seem to suggest that she is recovering and might be discharged.
Now, to give you a bit of context. I am a rheumatologist doctor and as the title suggests, I changed my job around eight months back. After finishing my rheumatology training, I practised as a consultant for a year in India, before moving to the United Kingdom (UK) for a fellowship. For most laymen, rheumatology is a field that deals with arthritis. In reality, we deal with complex multi-system diseases. These are diseases where a part of one’s own immune system starts revolting against its own body. These are usually lifelong, debilitating and can be even life-threatening.
Rheumatologist are often thought of as arthritis doctors. Yes, we deal with many diseases with arthritis. But in reality, most rheumatology diseases are complex, with effect on multiple organs besides joints.
Suhana suffered from a complex disease called Sjogren’s syndrome. Sjogren’s syndrome is a disease which can affect a variety of organs. Its severity can range from having morbid symptoms of dry eye, arthritis etc to involve major organs, which can be life-threatening. Suhana suffered from an aggressive variety of this disease with muscle weakness and kidney involvement. Her muscle inflammation made her shoulder, hip and back muscles very weak. Even seemingly easy activities like wearing her clothes, combing her hair or turning in bed was extremely difficult for her.
She was referred to me for a rheumatology opinion. I remember the first visit well enough. Suhana and her husband were obviously frustrated by the debilitating disease manifestations. Her gaunt features and his worry lines made them both look older than their ages. She was told elsewhere that she had rheumatoid arthritis, but it was obvious that she had a more sinister disease. I counselled them with a plan, which I believe, at least allayed some of their concerns. Subsequently, after diagnosis, we started treating her with high dose steroids and drugs to suppress her overactive immune system. She followed her treatment diligently with timely visits, always accompanied by an ever concerned husband. Her gradual improvement help recede the worry lines (of both) replacing it with warm smiles.
Every patient is different and the same disease can affect different individuals with a varying level of severity. Not only that, but every patient responds differently to same treatment. As any doctor treating patients with chronic diseases, I get familiar with their disease patterns and idiosyncrasies over time. Similarly, in Suhana’s case, it became quite evident that her disease is intensive. It appeared that she will need close monitoring with slow steroid taper to keep up the benefit achieved.
Every patient is different with variable symptoms of same disease and different response to same treatment. Any doctor treating patients with chronic diseases will get familiar with their disease patterns and their idiosyncrasies over time.
I had to depart to UK earlier than expected. I had to expedite the process of wrapping up my practice, counselling patients and switching them to alternative consultants. I and my hospital tried to the best of our capabilities, but obviously, the transition was not smooth in everybody. In India, a group practice is a rarity in private healthcare. Most consultants work independently. As such, switching from a doctor one trusts is emotionally challenging. It gets more challenging when a patient is further exposed to new settings.
As such, switching from a doctor one trusts is emotionally challenging. It gets more challenging when a patient is further exposed to totally new settings of medical care.
I am not sure what happened with Suhana after I departed. Rheumatologists often love and fear steroids equally. At the start, they are game changers in disease response and often save lives. But give them for prolonged courses and their side effects become a big headache. Rheumy’s will always try to use steroids judiciously in their patients and often try to stop them altogether. But given the nature of our diseases, we understand that at least in some, steroids need to be continued in minimum possible doses. Suhana was one such patient. It appeared that her steroids were discontinued and that possibly led to a flare of her disease. She was eventually given steroids, but probably, it was too late for her.
Rheumatologists often love and fear steroids equally. At the start, they are game changers in disease response and often save lives. But give them for prolonged courses and their side effects become a big headache. However, in patients with aggressive diseases, we often have to use them long-term.
At times, I can almost visualise Suhana’s husband with his worry lines, with profound sadness in his eyes, probing my decision to leave. But, again I might be oversimplifying the scenario without exact details. First of all, I am not sure of the exact sequence of events here. Besides, I always elaborate my observations and plan on each visit notes. They should have been ideally been sufficient to gauze her situation. Maybe Suhana was destined for a flare of her disease. Complex rheumatology diseases like Sjogren syndrome can often deteriorate due to unpredictable causes. Despite this possibility, I can’t shed off this awry feeling that maybe, if I hadn’t moved my job, I would be still attending a much healthier Suhana in my clinic. I am not being ostentatious of my capabilities. Suhana might have had difficulty in coping with a new consultant and complexities surrounding it. She might have been around for reasons irrespective of my clinical capabilities. But alas, we will never know and I might always carry the residual guilt with me.
As a doctor, I must refrain from getting attached to my patients and try to prevent their overt dependence on me. I try, but in a field where you deal with chronic diseases, alleviate pain, suffering and at times, save lives, it’s difficult not to. We are human after all.
Since I left Mumbai, I get emails and messages every day from my patients. I make it a point to reply them thoroughly, guide them and try to give cues to their treating doctors accordingly. Most patients have been successfully following with other consultants. However, there remain a few, who massively trust you. These are usually the ones where I made a diagnosis or could manage their life-threatening conditions effectively. More often than not, these are also the ones whom I counselled passionately (when they had totally given up) and made them adhere to their treatments. Their disease management is complicated by apprehensions and inability to establish trust with other doctors. I am not sure where my moral duty stands here. As a doctor, I must refrain from getting attached to my patients. I am not sure if that is possible in real world. We are human after all. One might argue that by supporting them, I am making their process of establishing trust with other consultants difficult. But, I believe that I should continue to empathise and guide them until they get accustomed to their new consultants and vice versa. I, anyway, do not want the guilt of other Suhana again.
Author: Dr Nilesh Nolkha, Rheumatologist
Dr Nilesh Nolkha is a young and dynamic rheumatologist who keeps patients interests at forefront of everything he does.