Chronic Disease—A Clinician’s Perspective

Avinash Jain, MD DM (SGPGIMS), IRF (UoB, UK)
Assistant Professor, Mahatma Gandhi University of Medical Sciences

Mr. A must be coming to your clinic every three months since time immemorial as you have given him a ‘name.’ I mean his disease a name! [Naamkaran]. Then there is Mrs. B coming every six months for renewing her prescription. They are unique in their own way and their own world. But they have one thing in common. They suffer from a‘chronic disease.’The word chronic is like tinnitus—it keeps ringing in your ears every time a patient comes with a hope that this will be his or her last visit. Do they look forward to seeing you? Well, the answer is like a relationship—complicated. It needs nurturing. Nothing prevails like prevalence.

It is a substantially heavy term or rather a long term. We all face this situation day in and day out. A seemingly less ‘severe’or mild disease still needs to be delineated. Numbers, scores, and PGA do not work here. They are all digits in the scheme of a quantitative world. A quality world needs much more. It is more difficult to come to terms with the nature of the disease, and it is equally painful to explain the disease course. The intensity of this tinnitus depends on how well a patient has been ‘educated.’ Does that depend on the patient's background education or our number of degrees or the number of relatives/care-givers? I feel the answer to the first two questions is a definite NO. It depends on our sharing and communication skills. As they say, a better doctor heals more with his vocal cords and expressions than his or her pen. The pen is just a medium to jot down some random chemicals on a piece of paper, but a gesture by welcoming the patient with a touch,expressions through face, and ‘vaani’ emanating from ‘true’ and ‘false’ vocal cords are much more rewarding.

In one of the interviews conducted, a patient reported saying is it better to suffer from an ‘incurable’ disease and take medications life-long or is it better to suffer from a ‘curable’ cancer? This is the bearing of chronic disease. It is the most challenging part of the consultation. Some may escape by avoiding it, but it will keep coming back to you. It gets more abstruse with subsequent visits. Give them hope but with a pinch of veracity. A patient has built his or her own vision of disease around the web of symptoms that have entangled him or her. This vision is complicated by the near and dear ones, beaming with knowledge and ready to give their expert opinions. They are sometimes as sinister as the auto-immune nature of the disease; driving a patient’s mindset (Disease is like a plane with two or more pilots and an auto-pilot and all of them want to keep you safe and take you to a destination but……). But is it their fault? They all are seeking an answer and cure to the ailment. Even we fall prey when our relatives advise us from their experience. Some of them may work. They worked for me. What does it say indirectly? It tells us that it isimperative to establish a bond with the patient, else the lingering and protracted course of the disease will make them tread on a path of nonadherence and poor compliance making the disease activity calculators jump up drying the ink of our pens as we fill up more pages.

It needs a lot of conviction. It is easy to get agitated as they ask you the same question duringevery visit, but the burden of chronic disease can be metamorphic. They need continuous reinforcement. No matter how knowledgeable the patient is.

We don't need an RCT to prove a point that time spent with a patient is one of the best DMARDs. Behavioral changes associated with chronic diseases transcend categories of illness and need modulation. We need to educate the patient, family members, and relatives. Confront their agony and doubts with tender, love, and care. Reciprocal determinism is essential—what it implies is the influence of a group (family members) on the individual and vice versa. Discussing their disease is just one aspect; it is essential to enhance their health behavior, address the co-morbidities and the family. Low perceived social support can induce an inconceivable cytokine storm. Have a vision wider than a tunnel vision and walk together with the patient in his or her journey.