Challenging the entire architecture of Indian medical culture
In our model, doctors are gods, patients are passive, and families are collateral damage
We treat end-of-life care as a taboo, something to be whispered only when all hope has evaporated and the hospital bills have begun to feel like ransom notes. Istock
Unlock Exclusive Insights with The Tribune Premium
Take your experience further with Premium access. Thought-provoking Opinions, Expert Analysis, In-depth Insights and other Member Only Benefits
Advertisement
WHAT does it mean to be alive in a society that treats information as privilege, choice as optional, and dignity as negotiable?
It is a question most Indians avoid, perhaps because the answer exposes the uncomfortable truth about how we deal with illness, ageing, pain, and — most of all — death. We treat suffering as a private embarrassment. We treat medical authority as unquestionable. And we treat end-of-life care as a taboo, something to be whispered only when all hope has evaporated and the hospital bills have begun to feel like ransom notes.
But at the wonderful Godrej Literature Live! The Mumbai LitFest, at the launch of ‘A Good Life: The Power of Palliative Care’, where the crowds outside were so thick they almost broke the doors down trying to enter, Jerry Pinto shattered that silence.
There are writers you read. And then there are writers you return to — like rituals, like homecomings, like comfort food for the soul. Jerry Pinto has always been that writer for me. I watched Jerry rise to speak as the lovely Faye D’Souza looked on.
He spoke about palliative care with a calm, almost radical, clarity. Something shifted. Because what he was really talking about wasn’t medicine. It was humanity.
Jerry began with a deceptively simple story: a young paralysed man who finds meaning in making decorated envelopes, supported by a palliative care team that gives him agency rather than pity. It wasn’t dramatic. It wasn’t cinematic. And yet, the story carried the weight of a manifesto. Here was a man who could not move his body, and yet — through care rooted in dignity — he could move through the world with purpose.
This is the quiet revolution Jerry is arguing for: that palliative care is not about dying well, but about living well — even within limitation.
This idea alone challenges an entire architecture of Indian medical culture. We are a country obsessed with “doing everything possible”, often in ICUs where machines hum louder than human voices. We confuse ventilators with victory. We mistake prolonging life for preserving it. And we equate acceptance with surrender, even when acceptance may be the truest form of compassion.
One of Jerry’s most devastating stories is about Uncle M — a man who loses his voice after cancer surgery, without warning, without preparation, without even the dignity of being told what to expect. His family is too dependent on the surgeon to question him; the doctor is too arrogant or hurried to explain; and the man himself is left to scribble jokes on pieces of paper at parties, tolerated but not understood.
Jerry’s provocation is sharp: if information is power, why do we deny it to those who need it most? If choice is central to democracy, why does it evaporate in hospital corridors? If dignity is sacred, why does illness so easily erase it?
The answers are systemic and cultural. We have inherited a deeply hierarchical medical model where doctors are gods, patients are passive, and families are collateral damage — sucked into a vortex of fear, guilt, debt, and impossible decisions. Add to this our national discomfort with talking about mortality, and you get the perfect recipe for suffering that could have been avoided.
Jerry’s call, therefore, is not just medical. It is moral. He urges us to reconsider what care means. Not as charity. Not as protocol. Not as the final step before the curtain falls. But as a philosophy of living — one that prioritises communication, comfort, companionship, and clarity.
What Jerry’s work demands is emotional literacy: the ability to discuss uncomfortable truths with grace, to hold space for pain without turning away, to redefine strength not as fighting endlessly but as choosing wisely.
And perhaps most importantly, Jerry asks us to dismantle the shame around needing help. Because palliative care is not defeat. It is presence. It is the scaffolding that holds a person when life becomes fragile. It is, in its purest form, love made practical.
When Jerry Pinto spoke that day, he didn’t offer easy hope or melodrama. He offered perspective, vocabulary, a way to live that honours the full arc of being human right till the end. If we listen to voices like Jerry’s, perhaps it can mean this — To be alive is to insist that care is not a privilege. To be alive is to demand that pain not be borne alone. To be alive is to make dignity non-negotiable.
And to be alive, truly alive, is to walk each other home with honesty, clarity, and love.
— The writer is an acclaimed author
Advertisement
Advertisement