When acts of good intention end up in harm

Mrs. C was inconsolable when we saw her in the clinic yesterday. She had lost her vision recently in the past 4 months. It started as a mild blurring of vision and gradually progressed over the past four months and now she is barely able to perceive bright light. Mrs. C is an elderly lady living alone in a small hut in a village near our clinic. She has a son, daughter in law and grandchildren, but they live a few houses down the lane and they give her food three times a day. That is the only contact she has with her family. On Sundays, since it is a holiday, the grandson brings her to the clinic, stays with her and takes her back home. Four months ago, Mrs. C would at least visit some neighbors and have conversations. She would go for the rural employment guarantee scheme labor under which some minimum wage is guaranteed to people who go for work. Now, after she lost her vision, she is completely home bound, dependent on others for even her daily activities and has absolutely no connection with the external world. 

 

Rewind to a year ago, Mrs. C had first come to the clinic referred by our community health worker with complaints of severe dry cough. She looked very sick and tired. Even as I was examining her, she had an episode of dry hacking cough. She was grossly wasted, but there were no specific findings on examination of her chest. I referred her to the nearby Taluk hospital to get a sputum examination and a chest X ray so that I could look for tuberculosis of the chest. The next week she came back, sicker than before, but with both her chest x ray and sputum test negative for tuberculosis. I couldn’t believe that the tests were negative. I wrote a letter to the medical officer of the Taluk hospital explaining that I have a strong clinical suspicion of tuberculosis and so I requested them to initiate treatment for tuberculosis. She was sent back by the officer with just some random prescription for cough suppressing drugs. By now, I had more information from the community health worker that Mrs. C had recently lost her son to lung tuberculosis. When her son was diagnosed with TB, his wife and children had abandoned him and Mrs. C was the sole care giver. She had been under the same roof as her ailing son and had cared for him closely during his dying days. I was now convinced that she had TB of the lungs. I wrote a letter to the medical officer of the Government specialty hospital for chest diseases, which is about 50 Km away from her village and sent her there along with our community health worker.

 

Mrs. C had to go there 3 times, they did some special tests on her sputum, a test called CBNAAT which detects the DNA of tuberculosis bacterium present even in very small amounts and they did a CT Scan of the chest. As both were inconclusive, they sent her back with a note that she does not have TB. Meanwhile, she continued to suffer with the hacking cough and by now it was almost 2 months since I had first seen her. She had started to become breathless. I was becoming restless as my clinical intuition was strongly suggesting that Mrs. C had tuberculosis. I called the District TB Officer, the person in charge of supervising all TB related activities in the district and complained to him that I have this elderly lady whom I clinically suspect to have TB, but the system is not giving her the anti tuberculosis treatment. In the National TB Elimination Program of the government of India there is a provision to start a patient on anti TB treatment even when all tests are negative, based purely on clinical suspicion. He was aware of this. He was a very reasonable gentleman and after hearing out my reasoning, he organized for Mrs. C to start the TB treatment. We had our community health worker closely follow her up and monitor her treatment. 

 

Over the next few months of treatment, Mrs. C gradually improved. Her cough subsided. She also gained some weight. I thought to myself, “I told you guys so…” and rejoiced on achieving something nice for a patient. She became a very good friend of ours and would visit us often, now with stories of how her daughter in law talks ill of her for taking treatment for TB. She did not connect the dots and was blissfully unaware that she had contracted the illness from her son when she was giving him care during the last days of his life. We did not see any reason to tell her that and introduce any negative feelings about her last few days of caring for her son. Mrs. C’s treatment with TB was not a smooth ride. It was quite turbulent. She first developed severe vomiting and couldn’t tolerate any food for 2 weeks. We supported her, treated her and reassured her that it will go away soon. We struggled hard to keep her on the tablets. Then a few weeks later she developed a diffuse skin rash all over the upper part of her chest which was itchy. This was a reaction to the TB drugs due to severe deficiency of one of the essential vitamins, Niacin. We started her on vitamin treatment and slowly the rash subsided. All the while, Mrs. C was very close to giving up on the TB treatment. We kept reinforcing the need for her to take the tablets and kept her on track throughout. 

 

Play forward 6 months after starting the treatment, Mrs. C was cheerful and happy because she had now completely recovered from her cough and her skin rash had also vanished. She visited the clinic regularly and had mild and cheerful conversation with us. She successfully completed 6 months of anti tuberculosis treatment. This was a big milestone for all of us and we celebrated. 

 

Play forward to December 2021. Mrs. C came to the clinic one morning saying that her vision had become blurred. She was finding it difficult to identify people’s faces. Usually patients who are on anti tuberculosis treatment develop visual defects because of the side effect of one of the TB drugs, ethambutol. But Mrs. C had completed her anti TB treatment. She was off the medication for almost a month now. On clinical examination, there did not seem to be any obvious problems in the eyes. She had already undergone cataract surgery in both her eyes in the past. So we referred her to the nearest ophthalmology center in the government hospital. She went back and forth several times and did not have an answer for her eye problems. Then we spoke to a friend of ours who runs an ophthalmology clinic about 50 km away from the village and this friend agreed to see her. We put her on a vehicle with our community health worker and sent her there. They evaluated her eye and reported that Mrs. C had developed irreparable damage of her retina, probably due to a delayed toxic effect of the TB drug. 

 

Now every time I see Mrs. C, I feel a mixed feeling of sadness and guilt. Maybe the medical officers in the Taluk Hospital and in the Chest Hospital were right in deferring anti tuberculosis treatment for her. Maybe, I should have explored an alternative line of treatment. Maybe, I should have believed the tests and the lab reports rather than depending on a clinical intuition that it is TB. If I had not started her on ATT, maybe she wouldn’t be so dependent on others and so miserable now. I don’t have answers and sometimes I cannot sleep at night when I think of patients like Mrs. C. I just wish and pray for wisdom to always do things that are best for the patients. But I guess, that is too much to ask, for we are humans and to err is human!