For whom, the right to die?
Challenge after euthanasia verdict is to ensure dignity to the poor.
Supreme Court of India
Six months ago, Pramila came to the government hospital I work in with sudden abdominal pain. A CT scan revealed intestinal gangrene; we immediately operated on her. We had to remove around 80 per cent of her intestine. After a prolonged recovery from the surgery, Pramila was left with a massive deficit of bowel, which meant that only a small fraction of what she ate could be absorbed. This wasn’t enough to support her nutrition. During hospitalisation, we administered her daily nutritional needs through a special intravenous formula. One bag of this solution costs around Rs 4,000. Pramila was a homemaker, her husband a daily wage labourer and she had three kids to look after.
In the hospital, we managed to procure the bags through a special sanction. Pramila showed gradual improvement. After two months when it was time for her to go home, the only way to maintain her nutrition was to keep on administering the bags at home through a special device called an intravenous port. In the developed world, such patients lead reasonably normal and long lives with what is called home parenteral nutrition. Some also get small bowel transplants. We managed a donation to fund Pramila’s nutrition bags for a few weeks and as a compromise, advised a bag on alternate days. Pramila and her family, who lived in a nearby slum, somehow managed to administer the solution for another three months.
When I saw her last month, Pramila was beginning to look emaciated. She pleaded, “Please stop this. I am making my family bankrupt; my husband can’t go to work. Please let me go.” We promised to help with more funds but knew this couldn’t go on for long. She was requesting withdrawal of care.
The Supreme Court’s judgment on euthanasia is indeed a leap of imagination. It addresses the question faced by many countries as to how far should one go in an effort to keep a patient alive. In a country where public discourse is gradually dumbing down ideals like autonomy and dignity, free will being upheld by the highest court of the land is both reassuring and elevating. But as someone who treats sick patients on a daily basis, I am afraid the difficult part begins now. When lofty but nebulous concepts like advanced directives, passive euthanasia and end-of-life care intersect with the rather desensitised and uneven terrain of Indian healthcare, the challenges are not only immense but also treacherous.
A crude version of passive euthanasia is already practised in India. But it is arbitrary, inconsistent and executed by stealth. In the current judgment, Justice Chandrachud quotes from what I wrote in the aftermath of the Aruna Shanbaug ruling in 2011: “One of the reasons for passive euthanasia is that the patient or his family could be running out of money. In some cases, this overlaps with the incurability of the disease. In others, it may not. Costly medication and intervention is often withdrawn as the first step of this passive euthanasia process. Sometimes patients are transferred to smaller (read cheaper) institutions or even their homes, with the tacit understanding that this will hasten the inevitable.”
Another bizarre form of withdrawal of care — common in private hospitals — is to carry out what is clumsily termed “discharge against medical advice”. When costs become unbearable, in a joint plan of sorts between the family and the doctors, the patient is disconnected from life support, put into an ambulance often to die on the way or at home. Adya, the young girl who died at Delhi’s Fortis hospital after a prolonged and costly battle with dengue, breathed her last under such circumstances.
A substantial number of patients die of illnesses in this country either because they don’t get care in time or cant afford treatment. Those with terminal illnesses suffer needlessly because of poor palliative care services, including lack of access to painkillers. Against this background, “terminal illness” and “withdrawal of care” acquire a different context. Even the SC judges refer to this faultline. In a worrying but candid admission, they state that since the state cant assure a right to dignified life, it cannot curb the right to die.
The biggest challenge, I see, is to define terminal illness in the non-cancer setting. Even in cancer, the goalposts are changing. If the threshold for passive euthanasia is lowered to include potentially treatable diseases, this could be a setback to the more urgent struggle for universal affordable healthcare, including humane palliative care.
I spent 20 years at the KEM Hospital where Aruna Shanbaug lay in a persistent vegetative state. When I saw the pictures of Aruna Shanbaug flashing across media, I remembered Pramila. I asked my colleagues whether there was any news about her. “Yes her husband came last week,” one of them said. “She passed away. She refused to take the intravenous solution. They got exhausted running from pillar to post to get the bags.” While Aruna’s story is well known there are many like Pramila’s, which will never reach the public space. While sensitively offering withdrawal of care to those who need it, we have to respect the dignity of a larger number of our fellow citizens who due to the accident of their birth suffer a structural form of euthanasia. That’s the challenge we have to confront.
The writer, a Mumbai-based surgeon, is the chairperson of the Indian Forum For Medical Ethics
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