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Review: A Good Life by Jerry Pinto
A book that uses stories of patients, doctors and caregivers to raise awareness about inclusive approaches to medical care for those suffering from serious illnesses
Jerry Pinto’s books hit the market with such astonishing frequency that it is hard to keep up with his growing body of work. One marvels at his ability to bring profundity, humour and a loving gaze to whatever subject he touches, whether it is mental health, disability, caste, queer life, or cinema.
His latest book, A Good Life: The Power of Palliative Care, is a powerful work of non-fiction that uses stories of patients, doctors and caregivers to raise awareness about “an inclusive approach to medical care for any serious illness, at any age, right from the moment of diagnosis”.
The thrust here is on care rather than cure because the latter is not possible for many individuals. In such cases, palliative care focuses on enriching the quality of their life with holistic support and helping them “be as pain free as possible” so that they can “find joy and peace”. Pinto busts the myth that palliative care is only for cancer patients, and for people who are about to die. It is important to correct this perception as it prevents people from accessing what can benefit them.
This book seems like a ray of hope in a bleak scenario where needless tests, prolonged hospital stays and exorbitant costs have become commonplace, making people approach doctors with suspicion rather than trust as they feel that profits will be prioritized over patient welfare.
Etymology enthusiasts would be tickled to learn that ‘palliative’ harks back to the Latin word ‘pallium’, meaning cloak. Pinto notes, “It suggests the warmth and protection of such a garment. In its ordinary English sense, it means to make something better by making someone feel better.”
In a span of 10 chapters, and 250-odd pages, Pinto introduces the reader to what palliative care offers, why it exists, and how it can benefit people. According to the World Health Organization, it “prevents and relieves suffering through the early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial or spiritual”.
The reader is encouraged to think beyond the pain that the body experiences. Pinto accounts for numerous kinds of pain that go unacknowledged, and therefore unaddressed, in the interactions that patients and their caregivers usually have with the mainstream medical-industrial complex.
Drawing from the work of Dr Cicely Saunders, the founder of the modern palliative care movement who worked as a nurse during the Second World War and later as a social worker in a hospital, Pinto writes about the “social pain” that originates from the stigma associated with various illnesses, and the “economic pain” that builds up due to expensive treatments.
Added to this is the “bureaucratic pain” of navigating complicated and unfriendly systems, the “spiritual pain” of wondering what one did to deserve such excruciating suffering, and the “psychological pain” that results from having one’s routine disrupted and dignity undermined.
Pinto writes with the empathy that a book of this kind warrants. His emotional investment in the subject makes him seek out and tell stories that not only inform and educate but move deeply. He deserves kudos for expanding the reader’s understanding of pain, and for providing a vocabulary that views the patient as a full human being and not just a diseased body that needs to be fixed.
The author maps out the landscape of palliative care in India, making readers aware of organizations across the country that are doing this work, including the Cipla Palliative Care Centre in Pune, CanSupport in Delhi, the Wadia Hospital for Children in Mumbai, Novi Survat in Goa, Dr Bhubaneswar Borooah Cancer Institute in Guwahati, Homi Bhabha Cancer Hospital and Research Centre at Visakhapatnam, the Thiruvananthapuram Institute of Palliative Care, St John’s Hospital in Bengaluru, and the Pain Relief and Palliative Care Society in Hyderabad.
The stories gathered from these places serve to emphasize the five main precepts guiding palliative care — patient autonomy, beneficence, non-malfeasance, justice and collaboration.
Pinto does not probe more than is necessary, extending respect for privacy that must be at the heart of any research assignment that witnesses and records vulnerability. His sensitivity also stems from his own experience as a caregiver to his deceased mother, which is shared in the introduction to this book. She was diagnosed as bipolar and made numerous suicide attempts.
“What if my mother had access to palliative care? What if there had been someone she could call when she was depressed and found it hard to breathe, when she did not want to breathe?” he writes, attempting to bridge the distance between him and his subjects with utmost sincerity. This book is a great example of how one can transform suffering into an act of beauty and generosity.
Further, he says, “What if my sister and I had had a place where we could go to talk about our anger and our hurt — and the attendant guilt we felt when we prayed or wished or longed for a ‘normal’ mother? What if I had had someone to look me in the eye and say, ‘This is not your fault’?” Pinto’s brilliance as a writer lies in articulating the uncomfortable thoughts that many people have but are hesitant to air because they either judge themselves or feel judged by others.
He talks openly about caregiver burnout, compassion fatigue faced by people working in hospitals, and gaps in the medical curriculum with respect to training about pain management. He also draws attention to the tireless labour often expected unfairly of women as caregivers.
Pinto keeps the language serious but informal, never overwhelming the reader with data. This book deserves to be read by everyone who is curious about how health care is being humanized.
Chintan Girish Modi writes about books, films, art and music. He can be reached @chintanwriting on Instagram and X.
