Sheela could barely walk the three steps across our clinic threshold without gasping for air. She was in her late thirties, pale, fragile, and drowning in her own lungs. Beside her, half-carrying her frame, was her husband, David, thin, exhausted, with dark hollows beneath his eyes. Eight years earlier, just after the birth of their second child, her immune system had turned on itself. The diagnosis was systemic lupus erythematosus. Within two years, it had destroyed her kidneys.
“From the time we got the SLE, we would visit the government hospital clinic every month. We even made friends among other young women her age and their spouses” said David. Through the years they saw several of their SLE-sisters slowly fade away with kidney disease, go on dialysis, and ultimately die within a few years. Even before she developed kidney disease, she knew what could eventually happen.
“Nothing is more horrible than waiting for the inevitable to happen to you. We would spend sleepless nights worrying about how we would manage the expenses? How we would manage the household? Everything was confusing” Sheela added.
The bad news arrived during one of the visits and the doctor advised her to go on dialysis. Initially they had inserted a tube into her neck veins to perform the dialysis. She recollects how she could not move her neck for that entire 15-day period. The neck was so stiff that her children would make fun of her that she was like “Chitti robot”. Though she would laugh with them, the pain was irritating. She couldn’t swallow food. She felt sick and tired all the time. Then they removed the tube after creating an arterio-venous fistula over her left wrist. When the wrist fistula clotted after three months, the hospital blamed her. They claimed she had ruined it by lifting a heavy vessel of cooked rice. Whether it was the rice or careless cannulation didn’t matter to them. She was yelled at, labeled reckless, and a new central venous cannula was driven into her thigh. They had to go for dialysis once in three days. Initially David would accompany her every time, but after a few visits he could not get time-off from work and so she would go all alone. Soon, she couldn’t walk, clean, or cook. She could not even get herself to the dialysis center for the treatment. She had become, in her words, “a living zombie waiting for a merciful end”.
“It was in the heights of such a miserable life that we decided we don’t want dialysis anymore. We know from the experience of our friends that dialysis ultimately leads to slow and progressive death. But the process of dialysis was giving us a miserable life which we did not want. There was no difference between the suffering of sickness and the suffering of the treatment. We decided to stop dialysis” David said.
They came to me for help for her severe breathlessness, chest pain, lack of sleep and poor appetite. Ours is a primary care clinic with very limited facilities to help her. We did not even have an oxygen cylinder to give her oxygen which she badly needed. I started explaining to David that she is in end stage renal disease and that I have nothing to offer her at the primary care level. He gave a paradoxical laughter. “Don’t worry doctor. We know all this. This is what they say when we go to the medical college hospital also. Even the big nephrologists have nothing to offer us. We have even gone to a private hospital and spent close to 2 lakh rupees. They are also saying the same thing. They have nothing to offer us. Do whatever you can.”
Sometimes people are insensitive and judgmental. Even as David was narrating all this, one of our housekeeping staff who happened to hear this butted in and said, “If you really loved your wife, you would somehow take her to the hospital and get her the dialysis. You are coming here because you must be waiting for her to die, so that you can marry a new one.” What was already a distressed conversation suddenly became an emotional wreck and David broke down and started crying. “I love my wife and I don’t have to prove that to anybody. I will move the sky, moon and stars to bring comfort and health to her. I want the mother of my children to be around to see them grow. I cannot handle life all on my own” he said and became unconsolable. She knew, and she just held his hands like she was holding on to her dear life. That moment of raw and unadulterated love and absolute sadness moved me, and I found myself crying with them. We all composed ourselves after a few minutes. Then she spoke in a feeble raspy voice, “Please help me with whatever you can do here doctor. We cannot do dialysis. I know I will die soon without dialysis. But I want to die. I don’t want to be a burden on him. I know he needs to move on for himself and for my kids. Look at him…I cannot see him like this”
That was an immense responsibility. I decided that I will try my best to do what I can. I made her lie down in a propped-up position in our treatment room and started making frantic phone calls to my friends who were nephrologists. Four phone calls later, the collective wisdom of modern nephrology offered only an ultimatum: 'Convince her to get back on the machine.' This is the quiet brutality of modern medicine. When a patient accepts our technology, our compassion is boundless. But the moment a patient says, 'I cannot endure your cure anymore,' the system turns cold. We do not see a mother choosing a dignified death over mechanical torture; we see 'non-compliance.' We treat refusal as betrayal. Having run out of algorithms, we decide we have run out of care. Our empathy is conveniently conditional!
A senior and highly empathetic kidney specialist, one of the kindest I have interacted with, told me that I could try high doses of a medicine that is used to push the kidney to drive away all the water from the body and relieve the water-logging that is causing her breathlessness and give her oxygen support. I discussed this with the couple, and started the treatment. She became more comfortable with that briefly. Within two weeks she stopped responding to that treatment, worsened and died at home. This episode moved me profoundly.
Medicine that is not informed by patient stories is not good medicine; it is merely veterinary science practiced on human beings. It treats the damaged organ while ignoring the broken soul who carries it. For years, I assumed narrative medicine was simply the art of writing compelling stories about clinical practice. Now I know better. Narrative medicine is clinical practice! It is the discipline of listening to what cannot be measured by a lab report, understanding what an illness means to a family, and having the courage to act on their truth rather than our institutional rules.
Every clinical decision in my practice is now shaped by these unspoken realities. I have gathered these encounters, tales of defiance, impossible choices, and profound love in the face of medicalized suffering, in my latest book, Hearing the Unspoken: Stories of Health, Illness and the Human Condition.
It is an invitation to look past the charts, the machines, and the lab values, and finally sit with the human being.
Please do read Hearing the Unspoken on Amazon and share your opinions.
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