There are a number of diseases that are completely curable and there are some other diseases which are controllable with lifestyle changes and medication, such as diabetes and hypertension. Yet, there are ailments that are hard to control, such as most of the cancers and genetic diseases. For this category of diseases, even professionals are helpless. They can only provide some help and probably offer some comfort. We live in an era where people want instant and definite results; they want easy solutions for convoluted problems. However, in medical world, there are no easy solutions. A 9-year-old boy was recently diagnosed with Addison's disease.
This is a life-long disease and the patient needs to take regular medicines. The boy and his parents struggled for months to get this disease under control, but eventually it was achieved. Then a few months later, the patient developed autoimmune hepatitis, another difficult-to-treat disease. Why should he suffer another blow? Medically speaking, the two diseases can happen together in a patient. But for that child and his family, it was devastating. Emotionally one starts to think how could a child have two life-long, difficult to treat? But that does not change the reality that it happens. The child belongs to a four-member family; a caring father, a worried mother, the patient, and his 4-year-old sister.
The couple had first child two years after their marriage, who died in a few years following his birth. The child reportedly developed darkening of skin and died silently. Thinking retrospectively, the child, it seems, had the same Addison's disease. It means no cortisol is produced in the body. Cortisol is a crucial hormone for life. If this hormone is not replaced sooner enough, the sufferer might lose his or her life. So, when this boy developed darkening of skin, his mother instantly got it that something was wrong. She took him to a doctor, who rightly suspected Addison's disease and referred him to an endocrinologist. It took a few months for the family to cope with the diagnosis. After the initial shock, they did well in terms of bringing the disease under control, by administering medicines timely.
The child began to put on body weight back, which he had lost over the last few months. He begun to play with other children as before and act "normally". In November last year, he developed loss of appetite and began to lose weight again. Initially, we thought he was missing prescribed cortisol pills. Following his parent's assurance it was not the case, we run a battery of related tests and investigations on him, again. The report was gloomy. His liver enzymes had elevated. We knew autoimmune hepatitis can be associated with his first disease. Following few other specific tests and liver biopsy, a definitive diagnosis of autoimmune hepatitis was reached at.
This was second blow to his parents. It was hard for us to explain them why did it happen to him. Patients need to know the truth, good or bad. If we feel they are expecting some kind of miraculous cure, we must balance their hope with reality. We must be honest and provide enough information with utmost sensitivity and compassion. But, this is not always as black and white as it seems. There are often grey zones. "Will his hepatitis go completely with treatment?" asked his mother. Speaking in real terms, we are hopeful but not certain. He may or may not improve or if unlucky, it may worsen over the period of time. Only time will tell. "Medicine is a science of uncertainty and an art of probability," said Sir Willium Osler, who was a renowned physician. We face many kinds of uncertainty in medicine: uncertainty about diagnosis, tests, treatments, and outcomes.
Quest for certainty is central to human psychology. We are always wishing for certainty in the universe of uncertainty. However, this quest for certainty, both guide and misguide us. Unless we learn to make friends with uncertainty, this conflict is going to create great tensions. While dealing with uncertain situations, we must discuss this uncertainty with the patients or their care-takers so that false hopes are not raised. It is always better to live in gloomy reality than in false wonderland!
Dr M Shafi Kuchay