Living and Leaving Well : Author Jerry Pinto's latest book dives into the realm of palliative care

Death is a topic many approach with denial. But writer and journalist Jerry Pinto who won the Best Book on Cinema Award at the 54th National Film Awards has spent nearly two years doing something most people avoid: listening to stories about illness, pain, caregiving and the inevitable death. His new book, A Good Life (699, Juggernaut), is the result of this long, emotionally demanding journey into the world of palliative care in India. Through conversations with patients, caregivers, doctors, nurses and families, Pinto opens a conversation that society has kept on hold for too long. Behind the book was a strong will. His close friend, painter-illustrator Mehlli Gobhai, before his passing, had left money for childrens charities and named Pinto as one of the executors. While searching for the right cause to support, he came across the paediatric palliative care unit at a childrens hospital in Mumbai. They wanted to hire a librarian who would read to children and keep them entertained in their hospital beds, he shares. It touched something deep inside me. It fitted in with who I am a great believer in the power of the story, and with what Mehlli would have wanted, he reminisces. This discovery led him into the larger world of palliative care. He soon met doctors from the Cipla Palliative Care network who encouraged him to write a book on the subject, which was when he realised that palliative care was universal. At some point, we will be caregivers or we will need care. We are never going to be just bystanders, he says. Later, across visits to Mumbai, Hyderabad, Bengaluru and Goa, Pinto encountered many stories that reshaped his understanding of illness and mortality. To his dismay, he discovered from Dr MR Rajagopal that only 4 per cent of India has access to end-stage pain relief, despite the country being one of the worlds leading producers of legal morphine. Another moment came when a doctor told him that modern medicine can only cure 15 to 20 per cent of diseases. However, the stories that stayed with him were the ones where compassion went beyond protocol. He recounts how a Bengaluru doctor tracked down a patients estranged son so the mother, who was dying, could speak to him one last time. The doctor becomes a detective. That, to me, is the real art of medicine caring about people, he says. For Pinto, stories are essential to change how one views dying. Only stories can create any shift. One misconception is that people will not be able to take the news of a life-threatening disease, so families keep them in the dark. When we begin to accept that death is part of life, that it can be made beautiful or easy, that is when the stories make an impact, he said. In Goa, he met a 28-year-old man who had spent two decades lying in bed because no one had told him he could sit up. Through steady visits and reassurance, a palliative care team helped him sit, use a wheelchair and re-enter the world. A life was changed by this one intervention, Pinto points out. On choosing the title, he notes, Palliative care is associated only with the last stage of life, as if you should wait for the last two weeks. But palliative care is about helping you lead a good life. Additionally, writing the book changed him, too. My fear of death has gone, he says, adding, It wasnt death I feared, but indignity and hopelessness. Through A Good Life , he hopes readers and policymakers absorb that everyone has the right to live and leave well with dignity.