We read with great interest on the content, “What is in the name? Understanding terminologies of patient-centered, person-centered, and patient-directed care!“ by Raman Kumar et al. It is an excellent content by the author as this is an important aspect when it comes to the stigmatized disease management. After going through the content we tried to explain with a scenario that actually is more in streamline with what the authors have explained. A 26-year-old female was referred to our institute (CLTRI) by a private dermatologist for getting drugs free of cost in spite of its free availability at nearby government health care center. The patient was diagnosed and documented in private prescription as a case of borderline lepromatous disease with mild erythema nodosum leprosum (ENL). During the interaction with the patient we came to know that the patient was not informed about her disease and was only intimated to her in local native language that it was an allergy due to bacteria. Further she was also advised that she has to take drugs for 12 months without interruptions. From the prescription it was known that she had been prescribed the drugs, namely, clofazimine, rifampicin, dapsone in loose tablets for a week excluding rifampicin. Based on the request by the patient to get drugs free of cost and from far off place, she had been referred. The patient was thoroughly examined and was advised to continue and to get the drugs from our institute at free of cost. The patient strongly perceived it was an “allergy to bacteria“ like “allergy to sea food“. Since, it was already infused to the patient mind that she had only allergy to some bacteria we felt informing the diagnosis in terms of Medical Named Diagnosis either in local language may/will definitely create a disaster in her current and future life. So we tried to follow the same “diagnostic terminology“ of “allergy to bacteria“. But the worst part of this patient scenario was that “she was actually aware about her illness“. She had kept on informing us that she knows a few disease that mimic like her condition through other sources like awareness program, picture displayed in hospitals. She is also intelligent in knowing the nomenclature of our institute that was also told by the auto rickshaw's person who brought her to the hospital. She had also informed us regarding the skin signs pertaining to her illness as like the cases she saw in the premises with increased numbers of disability and non healing ulcers. So we were so much aware that the patient knows the diagnosis by herself. But the patient did not want any of the doctors to tag her as a case of “leprosy“ by the “Named diagnosis“ either in local term. She was also repeatedly informing us that “She has only having allergy to bacteria“ “allergy like sea food“ and not willing to hear anything new from our institute. So this case is a very good example of stigma to her and to the society. But the role and duties of doctor is to maintain the medical ethics. We were taught and learnt to inform the patient regarding their diagnosis and it is their right to know. But here in this case the patient did not want the doctor to reveal her any diagnosis even though she was so much aware. She wanted doctors to inform her desired diagnosis as allergy only. We the treating doctor faces difficulty in maintaining the medical ethics as first time exposing to the situation. Since the patient is illiterate we informed her as per her wish as “allergy“, but the document was clearly mentioned with the diagnosis and for registry. The patient was also advised to continue and finish the drugs at our institute. We have provided her a small card with details in it for further emergency management if needed in her area. To our good surprise, the patient had completed her regime completely.
From this case, we came to know that tagging a person with diagnosed stigmatized disease may not have much impact in relation to the life in terms of morbid management. Treating a person with the essential drugs needed for the disease without making any approved diagnosis in situ ation like this is also a part of medical ethics. As the “autonomy“ is considered the one of the pillar of the clinical ethics. We end with a small suggestion that can be written in the special cases where patients were super intelligent “Leprosy or Can it be Called “Acquired Bacterioneuro Cutaneous Infection“ – For the Sake of Ethical Consideration“
In conclusion, after the article by Raman Kumar et al. this case is a patient centered and they have the more deciding authority in even reviling their diagnosis. Thanks to the authors to bring a topic like this for clarification.
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1. Kumar R, Chattu VK. What is in the name? Understanding terminologies of patient-centered, person-centered, and patient-directed care! J Family Med Prim Care. 2018;7:4878