Local care, global epidemic

Book review of Enduring Cancer: Life, Death, and Diagnosis in Delhi

“In India, where patients are almost always diagnosed at late stages of disease progression, pain is an overwhelming part of cancer,” writes Dwaipayan Banerjee in his book Enduring Cancer: Life, Death, and Diagnosis in Delhi, published by Duke University Press. His research focuses on palliative cancer care — “a biomedical specialisation founded in the possibility of understanding, intervening in, and easing pain” — and what it offers the urban poor in India’s capital. Their attempts to live with, and alongside cancer, while negotiating the infrastructural failures of the public health system, are at the heart of this volume.

The ethnographic fieldwork for Mr Banerjee’s study is located in the cancer hospital at the All India Institute of Medical Sciences (AIIMS) as well as home visits with about 120 cancer patients served by Cansupport — “the city’s largest cancer care NGO.” Though the book comes across as hyper-local, it intends to contribute to a global conversation about medical humanities, public health, and urban poverty. After all, as the author points out, “the global cancer epidemic is now a key target of intervention in the UN Sustainable Development Goals, the World Bank’s Disease Control Priorities, and the 2013 WHO Global Non-Communicable Disease Action Plan.”

Building on the work of scholars such as Susan Sontag, Lawrence Cohen, Veena Das, Sarah Pinto and Lochlann Jain, this book shows how pain is experienced and understood when cancer gets embedded within fragile social relations. Mr Banerjee seems aware that his work could easily slip into romanticising the superhuman resilience of an underserved population, so he approaches the analysis of patients’ survival strategies with remarkable caution and sensitivity. He focuses on demonstrating how they “seek treatments and maintain networks of social support” in circumstances that are described as “hostile to their survival.”

A moving example in the first chapter involves a young couple, Malika and Madanlal, whom the author met on a home visit with Cansupport. Malika was depressed, and in pain, after being diagnosed with breast cancer. While she was hospitalised, Madanlal — a construction worker — painted their room with Malika’s favourite colours and designs. He also covered the walls with framed photographs from their honeymoon. Borrowing money and materials from his employer, he was able to transform the home environment to “ameliorate her pain”. This example highlights the crucial role that families can play in creating “a livable life.”

The “burden of cancer” plays out differently in families with a history of domestic violence. Women who are expected to shoulder additional responsibilities of care towards abusive partners have to also find ways of addressing their own trauma. This is evident from Mr Banerjee’s example of a cancer patient named Shyamlal, whose wife Deepa used the home visit from the Cansupport team as an occasion to narrate different episodes from “three decades of marital abuse” in her own life. The pain of conjugality gets enmeshed with the pain caused by cancer.

Enduring Cancer 

Author:  Dwaipayan Banerjee

Publisher: Duke University Press

Pages: 240; Price: $25.95 (Paperback)

Even in contexts where everything is hunky dory within the family, cancer patients have to oscillate between disclosure and concealment in their neighbourhoods, communities and workplaces. The sharing of medical information can possibly evoke pity, unsolicited advice, gossip, or even recollections about deaths of other cancer patients, instead of empathy.  

Mr Banerjee does an excellent job of investigating these relational complexities and trust deficits that palliative care providers have to deal with as part of their job.

He writes, “For patients diagnosed with certain types of cancer, pain is inescapable. Tumors may compress the spinal cord, damage nerves, press upon organs, or spread to bones. At times, pain is also an outcome of cancer’s highly debilitating treatments — surgery, chemotherapy, and radiation.” Instead of going into various types and stages of cancer, he examines how coping is enabled when specialists at AIIMS are able to translate “social, spiritual and psychological distress into physical pain, and vice versa.” He attempts to find out what “culturally appropriate modes of empathy” might look like.

Mr Banerjee is critical of the belief that cancer is a “Western disease” or “a disease of a prosperous urban elite” because this framing can be used to legitimise the absence of cancer care for people who incur financial debt or sell their assets to pay for hospitalisation and treatment. This point is noteworthy as “the current National Institute of Cancer Prevention and Research guidelines emphasize how new lifestyle choices such as alcohol consumption, overwork, meat eating, and sexual promiscuity are primary risk factors for cancer.” Does this amount to victim-blaming? Mr Banerjee thinks so.

Another striking aspect of this book is the author’s intellectual humility. His reflections on being an ethnographer in a setting where “the pervasive reluctance to talk directly and transparently about cancer posed productive challenges” would be helpful for researchers who struggle in their search “certainty and closure.” Instead of viewing this as a failure of his intellectual project, the author supplements his ethnographic work with insights from cancer memoirs and cancer films. This approach strengthens his analysis, and gives it greater emotional and intellectual depth.