‘I wish I had known earlier’: Jerry Pinto on palliative care and making peace with death

Indian author Jerry Pinto keeps writing about the things people would rather forget about or supress in a box in the bowels of their mind. In Em and the Big Hoom it was a mother’s mental illness; in his translation of Swadesh Deepak’s memoir I Have Not Seen Mandu A Fractured Soul, the same subject was explored from the inside; in A Book of Light, he looks into what it takes to look after someone chronically unwell, and in his new book, A Good Life: The Power of Palliative Care (Juggernaut, 2025), takes him to a ward where people already know they are at death’s door.

In this conversation, Pinto talks about the stories that have stayed with him, the people who keep India’s caregiving system running, and how writing about death finally eased his own fear of it. Excerpts:

You open the book with the stark admission, “I wish I had known about palliative care earlier.” How did this realisation become the emotional engine behind A Good Life?

A project like this needs an emotional engine, and it is a wonderful way to put it, thank you for that. But it must find multiple engines and these were available in the form of the other stories I encountered. I think one of the things about being a writer is that one becomes an evangelist for the story. As someone tells you a story, its shape begins to form in your head and you want it to go out into the world and perform its unique magic. Whether it was a story about a counsellor in a paediatric cancer ward ranging the city for manga comics because a young Kashmiri boy wanted to read them as Joanna Pinto of Bai Jerbai Wadia Hospital did or it was the doctors at Karunashraya playing detective to reunite a dying woman and the son she had abandoned thirty years ago, I could feel the pulse and throb of these stories pushing the project further. You see, palliative care ceased to be about death but about a celebration of life.

The new book, A Good Life: The Power of Palliative Care. (Generated using AI)

2. You introduce the idea of “total pain” — physical, psychological, social, spiritual and economic. Which dimension of pain do you believe remains most invisible in India today, and why?

I believe almost all pain is ignored, discounted, neglected and even gaslighted. We don’t understand the value of pain. It is an evolutionary tool that we developed in order to keep ourselves healthy. Without pain to warn us that something was wrong, we would not take steps to avoid it. And so pain is inevitable in the physiological sense but it must be dealt with. We are at a turning point in the life of the health systems of the country. We now even have patients coming from the developed nations for surgical interventions in India. Our hospitals are world-class, our doctors top-notch, our pharmaceutical companies competitive…and our health system is broken. Only four per cent of India has access to good reliable pain control mechanisms and drugs while we remain the country that exports the largest amount of legal morphine. We must do better and palliative care demands that we do better. And it can be done. Kerala has done it, taken palliative care down to the village level. A novelist friend of mine said that he mentioned in passing that a relative of his had cancer and he had no money. By the next day, he had two lakhs in the bank. People saw economic pain and knew that they wouldn’t be able to solve the whole thing but this five-hundred rupee note? This is going to help and they built up the money. Can we all do this? Can we commit to helping? Can we say to the sick person, ‘I don’t know what you’re going through but if you need me to cook you a meal or clean your house or watch your kids, here I am.’ We must all be available to each other and we must all demand that our medical systems are made accountable to us and gentler in action and in deed.

Your earlier works, from Em and the Big Hoom to your translations and poetry, often engage with suffering, memory, family, and the emotional textures of everyday life. How did your past writing prepare you, or perhaps haunt you, as you approached this book on palliative care?

Books generate books. That’s one of their functions. Em and the Big Hoom was a fictionalised account of how my family dealt with bipolar disease from which my mother suffered. From it grew A Book of Light where caregivers talked about their pain and grief and how they hold on to love in the storm. That led to my translation of Swadesh Deepak’s landmark memoir, I Have Not Seen Mandu; A Fractured Collage which is an account of mental illness told by a patient. Each of these books has been a milestone in my personal journey of understanding. A Good Life was however vastly different because it meant I walked into the ward, I sat with people who knew they were going to die. I will never forget the face of the thirteen-year-old who had been told that her leg had to be amputated. She had been through counselling but she wanted to be a dancer and she could see no future now. I sat by her bed and suddenly it occurred to me: Naache Mayuri with Sudha Chandran in the lead. I fired up my phone and looked up the song and played it for her and watched some light break on that young and tragic face.

You travelled across India meeting patients, caregivers, doctors and volunteers. Which encounter most transformed your understanding of palliative care?

I find it difficult to think of one. I know there were so many. There was that heart-breakingly beautiful workshop for the ayahs and mamas of Wadia Hospital on washing dead babies. There was the young engineer in Bengaluru with brain cancer, the only son of a cobbler, his sister estranged, his father an alcoholic…alone and holding on to the nurse’s visits to his bedside. There was the young man who wanted to go back to Bihar to sit for his exams because he wanted to return to normal life, even if he had lost one eye to cancer. There was the Muslim woman with a son who was fourteen years old and weighed thirteen kilos who told us that she was calmer during the holy month of Ramzan when the Holy Quran had been brought down to earth…here, I had assumed that the month of fasting would be an additional stressor but no, she said that she might need some counselling support when it ended. I was left marvelling at the human spirit.

5. The book highlights the immense, often unseen burden of caregiving, especially for women in Indian families. What did speaking to caregivers make you reconsider about the ethics and economics of care at home?

Susan Sontag puts it well when she says the land of the ill and the land of the well are two different countries. So when you fall ill, specially with a life-threatening or life-limiting illness, you move from the land of the well to the land of the ill. This is stressful enough but when you are in hospital, you are suddenly subject to an immutable routine. You will be woken up at five in the morning for a bath because that is the time when everyone on the ward gets a bath. Of course, medical science will say that sleep cures, sleep is important, sleep equals health but a hospital ward’s routine doesn’t take that into account. You will be roused from a healing sleep because doctor is coming and doctor must see that all the patients have been bathed and the doctor is the presiding deity of the ward.

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At home, if you are sleeping, they will let you sleep. But then someone must do the work. That someone is the woman of the house, the mother, the sister, the daughter-in-law. It is likely that she is already over-stretched but everything that must be done, the new routine, the changing of bandages, the sponge bath, the special diet, all of this will become part of her duties.

This must change or something will snap. Men must be involved in care-giving for their own sakes. To give care is to give love and to give love is one sure way of not having regrets later. For their own sake, for the sake of their mental health, men must be made to participate in the caring of the sick.

And finally, we need more caregiver support groups where caregiver burnout can be discussed, where others can tell you that they have been there, that they have felt the same anger and sorrow and guilt.

If you could make one policy change tomorrow to transform palliative care access in India, what would it be and why?

I would make it compulsory for every hospital to have fully-funded palliative care ward and every post-graduate medical college to offer palliative care as a specialisation.

And finally, many of the stories you recount are ultimately about reclaiming dignity and reconciling with pain, both others’ and your own. After writing this book, do you feel any closer to forgiving the past, or understanding it more fully?

I have always been afraid of death. I think it was because it made so many fleeting guest appearances in our lives when my mother tries to kill herself on various occasions and using different methods. This book helped me rid myself of the fear of death. When you talk to a child who knows he has very little time left but wants to go to the beach and plays on the sand with the energy and enthusiasm which tells you he is in the moment, he is inhabiting life in a way that you have not, you begin to make peace with the inevitable. There was fear of pain and indignity; that too has ebbed a little. To know that pain is on the palliative care agenda, to know that pain is being seen and recognised and understood, to know that indignity is only about the vulnerability of the body and our dependence on the kindness of others…all this has forced me to climb a steep learning curve.