DOI: https://doi.org/10.20529/IJME.2016.054
Thirty-five years ago, when my father died of a massive heart attack at the age of 61 after lingering for three days in a hospital, the family suffered no guilt – was he diagnosed early enough? Was good treatment provided? The answers were in the affirmative, given the quality of healthcare provided to a middle-class citizen in India at that time. Our (read middle-class) attitude to death, when we face it, is now complicated. As in the West, we prolong life even when its quality has decreased dramatically, we medicalise situations like pregnancy, scoffing at centuries of women’s wisdom, and we refuse to allow dignity in death. We now watch our dear ones as they linger for days in the intensive care unit (ICU); sometimes, the hospital does not declare death for a couple of days, but claims payment, unwilling to keep an unoccupied bed. We watch 90-year-olds living their last days in the terrible confines of the ICU instead of within the warm walls of their own homes, surrounded by their loved ones. We watch lives being prolonged by the intubator and other invasive devices even when there is no hope of recovery and when the patient is clearly suffering.
This is a grotesque charade like much else in India where lakhs of rupees are spent on maintaining breath in a dying body. I suggest that we look at death and dying in different ways today. Helping us do this are four major literary interventions in health – all made by Indians in the West. In 1994, Abraham Verghese wrote, My own country: a doctor’s story of a town and its people in the age of AIDS – a compassionate doctor’s account of the early days of AIDS. Not much later in 2010, came Siddharth Mukherjee’s The emperor of all maladies, a magnificent laying out of the history, diagnosis and treatment of cancer, and more importantly, presenting the physician’s dilemma in treating cancers. In 2014, Atul Gawande wrote Being mortal and what matters in the end, questioning allopathy’s vision of healthcare of the elderly and the issue of quality of life. Now in 2016 comes When breath becomes air, by Paul Kalanithi, which asks what a dying man can do in the face of near-certain death. There have been other Indian doctorwriters in the West too – Sandeep Jauhar for instance (Intern: a doctor’s initiation, 2009), making us wonder at the proliferation, in the last two decades, of the Indian doctor-writers who are laying bare issues of the healthcare system in the West. Is it that raised in one culture, transported to another head-on, has given them the capacity to see life and death with fresh eyes?
As I write this, Paul Kalanithi’s book continues in the New York Times bestseller lists, despite being a dark memoir. A literature student-turned-neurosurgeon, Kalanithi grew up in an Arizona desert town. His father a Christian, his mother a Hindu, condemned on both sides for their love, the couple fled to the USA. While his father was a cardiologist, his mother a physiologist, and both his brothers doctors, Kalanithi chose literature, but turned to medicine when literature did not satisfy his urge to explore the relationship between meaning, life and death. Kalanithi sees medicine as “the heroic spirit of responsibility amid blood and failure”.
Confronting death in the form of lung cancer, Paul Kalanithi wrote the book in the last year of his life. He and his wife Lucy – also a doctor, chose to have a child at this time. The baby and Kalanithi’s parents and brothers lightened his last days. Kalanithi remained fully alive. Despite physical collapse, he remained full of hope, not for an unlikely cure, but for days that were full of purpose and meaning. Probably much of this was due to his Indian family that surrounded him closely. His parents came down to stay in his town, taking a house on rent close by, so that they were not a burden on their son’s nuclear family, but were available for all help. Despite the great love surrounding him, Kalanithi’s account shows how difficult it is to look death in the eye and to face death with integrity, and also how possible it is. What makes life meaningful, and how one determines what is most important when little time is left – Kalanithi forces the reader to face these issues.
The epilogue by his wife Lucy is riveting. Plainly written, yet poignant and thoughtful, she details the course of the illness, explains Kalanithi, his suffering – their suffering, and yet conveys what lifts all this above the mundane. She tells us that Kalanithi’s book is not just about dying alone; it is about life and how to live it, the closeness of death lending it urgency.