Shades of Gray
An elderly woman came into a rural government hospital recently, complaining of a bothersome gynecological problem. I looked into Hirabai’s weathered, wizened face, and I detected only the slightest trace of worry behind her grin. She was merely being cautious. She did not anticipate any major problems. I hoped she was right, as I watched her climb onto the exam table where she bashfully untied the knot of her petticoat.
During the exam, my hopes for Hirabai were dashed. The initial examination revealed a mass on her cervix. A second, more experienced doctor conducted a follow-up examination. Based on his intuition, he determined that not only was there a tumor present, but that it was malignant. Of course, to confirm the diagnosis, further testing would be needed as the current diagnosis was based only on visual and manual evidence. But in all likelihood, Hirabai has cervical cancer.
Cervical cancer is not necessarily a death sentence as is the case with many forms of the disease. With immediate chemotherapy and radiation, the cancerous cells can be prevented from spreading and even eliminated. But for Hirabai, this curable disease may very well be a death sentence. Treatment for cervical cancer is costly everywhere and such services are simply not available in low-cost government clinics. She and her husband barely manage on a meager subsistence drawn from their half-acre plot of land; there is little chance that she will be able to cover the costs of chemotherapy and radiation offered at large hospitals in the city, not to mention travel expenses and lost wages. Knowing this, we inquired if her son resides nearby, in the hopes that perhaps he’d be able to cover the expenses.
“He’s in Mumbai,” she responded. Hirabai’s circumstances became clear.
Indian tradition mandates that the eldest son take responsibility for the care of his elderly parents. In earlier days, this was quite natural to accommodate as the joint-family structure necessitated that a son’s parents lived under the same roof as the younger man. But these days, as village livelihoods become less and less sustainable, sons (and daughters) are migrating to big cities to find work, leaving behind the frail and elderly. Though many migrants do send remittances to their native villages, the physical separation has created a growing rift, which makes it more difficult for the younger generation to properly look after their parents. Knowing this history, the doctors who had examined Hirabai refused to disclose their diagnosis unless and until the son returned to the hospital with her.
The ethics of this situation are messy. In the United States, withholding information would be a major breach of the medical ethics code, end of story. But here, there are complicating factors. The power dynamic and relationship between doctor and patient seems hugely skewed in many cases. Even in the US, the balance of power lies with the doctor, in the same direction as the balance of knowledge and expertise. But the skew is minimized as patients have become increasingly empowered by the accessibility of information and laws protecting their rights. The same laws and access to information does not seem to exist in many Indian villages, as a result, the balance of power strongly favors doctors. Particularly for rural and poor patients, doctors come to represent an unquestionable authority, to be approached with fear and reverence, which allows them to act beyond the scope of their real authority. Whereas it is a doctors responsibility to diagnose, advise, and treat a patient, in this case, the doctor is also able to determine when and how information about the patient herself will be disclosed, potentially barring her from seeking treatment.
Despite being firmly steeped in the ethical framework purported in the West, I still found myself sympathizing with the doctors’ tricky predicament; I found it is hard to judge the doctors’ decision as inherently wrong. Without her son’s support, it is very unlikely that Hirabai will be able to get treatment for her cancer. And without it, she’s likely to die. It seems almost cruel to subject the woman to the burden of knowledge of her impending demise, knowingly fully that there’s nothing she can do about it. Ignorance is, as they say, bliss. Why ruin what bliss she has remaining? What I would have judged in the past as a betrayal of trust and breach of professionalism, was perhaps also a gesture of kindness. What seemed so clearly black and white suddenly became muddled.
As I sorted through the shades of gray in my mind, the examination came to an end. Ignorant of her sealed fate, Hirabai hiked up her sari and adjusted the pleats, and flashed me a sheepish grin once more before walking out of the hospital.
Bindu Reddy, August 2009 Indicorps Fellow