Suffering transformed into acts of beauty
India, Jan. 3 -- 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 be 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 in cases of this kind. Palliative care therefore focuses on enriching the quality of life with holistic support and helping people live "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, or for people who are close to the end. It is important to correct this idea as it prevents people from accessing what can benefit them.
This book seems like a ray of hope in a bleak scenario where endless 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 prioritised over patient welfare.
Etymology enthusiasts would be tickled to learn that "palliative" has roots in the Latin "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."
Across 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 World War 2 and later as a social worker with 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 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 whole human being and not just a diseased body that needs to be fixed.
The author maps the landscape of palliative care in India, listing organisations across the country, 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 emphasise the five main precepts guiding such care: patient autonomy, beneficence, non-malfeasance, justice and collaboration.
Pinto does not probe more than is necessary, extending the respect for privacy that must be at the heart of any research assignment that witnesses and records vulnerability. His sensitivity stems from his own experience too, as a caregiver to his late mother, an account which is shared in the introduction to this book.
She was diagnosed as bipolar and attempted suicide numerous times. "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 sincerity.
This book is an 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 have but are hesitant to voice because they either judge themselves or feel judged by others. He talks openly about caregiver burnout, the compassion fatigue faced by people working in hospitals, and gaps in the medical curriculum with respect to training on pain management. He also draws attention to the tireless labour often unfairly expected 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 humanised....
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