Palliative care is often a nebulous concept. To the better informed, the phrase usually conjures up images of cancer or terminal illness. Jerry Pinto clears that misconception right at the outset, emphasising that palliative care is life-affirming and is about caring and love. This is reflected in the title of this book: A Good Life, not a good death. It goes without saying, though, that a good death is the perfect way to end a good life. A good life is one that is relatively pain-free despite chronic disease. The book also clarifies that hospice and palliative care are not necessarily synonymous.

Palliative care was established as a distinct medical discipline in England in 1967 when Cicely Saunders founded St Christopher’s Hospice in London. It was introduced in India in 1986 when the surgical oncologist Dr Luis Jose de Souza (Dr Luzito) started Shanti Avedna Sadan in Bombay (now Mumbai). The early 1990s saw the setting up of more such organisations, including Karunashraya (disclosure: I have been a volunteer and donor for two decades) in Bangalore (now Bengaluru). As the book makes clear, there are now organisations across India that provide sterling palliative care. Furthermore, palliative care has been embraced by public hospitals, NGOs, and the pharmaceutical major Cipla.

For this slender volume of real-life stories, Pinto interviewed several palliative care physicians and healers across the country. You will meet many truly committed individuals: nurses, social workers, counsellors, rehabilitation specialists, psychologists, volunteers, support staff, and doctors. Doctors may be the face of the palliative care team and the ones who negotiate with the hospital administration, but it is the nurses who are key to care. Teamwork is the norm, possibly more so in palliative care because there are many diverse aspects of care to be considered: the time period may be long—or devastatingly short—and the hopes and needs of patients vary. You will also meet patients who are often a doctor’s best teachers. Witness, for instance, 14-year-old Rohit from rural Bihar who quotes William Ernest Henley’s “Invictus” and itches to get back to school, minus one cancerous eye.

It is emphasised during our medical training that we as physicians can only promise care, never cure. To promise a cure is unethical but to fail to deliver care is equally so. Palliative care takes this promise seriously. However, many doctors view anything less than a cure as a personal failure. Thus, as I see it, one of the messages of the book will probably take some time to come to fruition in India: that palliative care should be a part of the treatment schedule from the time of diagnosis. Accepting at the very beginning that not all patients can be cured, and informing them kindly about this, is key. Resilience and dignity are essential. Having been both doctor and patient, I can vouch for the latter.

Empathy, communication, and ethics

Medicine is a social science as well as a hard science. One cannot directly apply the lessons of one group of people to another. Take the case of patient autonomy: it is sacrosanct in the West but has different shades of grey in India. And yet, people are more similar than dissimilar. When Harmala Gupta returned to India from Canada in 1991, having survived cancer, her attempts to create a peer-based support group were initially dismissed by oncologists, who believed that Indians had supportive extended families, unlike the nuclear families and lifestyles in the West. However, Gupta persisted and prevailed, and “Cancer Sahyog” was born. In retrospect, it is obvious that the vast majority of people benefit from such support groups.

Literature on palliative care is abundant, yet most doctors and medical students lack awareness of its basic concepts. The Medical Council of India has introduced the concept of AETCOM (Attitude, Ethics and Communication), but I am told these subjects exist largely in theory. Empathy, communication, and ethics remain a pipe dream in medical colleges that are already struggling under the weight of poor planning and inadequate infrastructure. If the medical students of today are to truly contribute to the nation’s health as the doctors of tomorrow, our governing bodies need to act fast.

This book is targeted at the layperson and is written in an easy, flowing manner. However, given that AETCOM teaching often lacks the anecdotes that make up life, I would recommend it to young (and not-so-young) doctors as well. Certain nuances will not strike even the brightest of students or the most empathetic of people. For example: “Would you like to be eye-to-eye with your doctor or would you rather have the doctor loom over you?” I remember a similar statement made by the redoubtable Mr Kishore Rao, one of the founders of Karunashraya, at a lecture that he gave in Bangalore in 2001. Another philosophy that all hospitals could adopt is that of having patient navigators who guide anxious patients through the various loops in a hospital, such as the KEVAT Patient Navigation Programme in Tata Memorial Hospital, Mumbai, and Suhrids at the Dr Bhubaneswar Borooah Cancer Institute, Guwahati.

There are many, many miles to go. One should take heart from the fact that at least a beginning has been made, but also let us remember that well begun is only half done. In this case, we are nowhere near half done. Out of 820 medical colleges in India, there are only 45 with courses in palliative care and 17 that offer postgraduate courses on the subject. And this, despite the exponential increase in the number of medical colleges in India (which should itself be the subject of much introspection).

If I have anything to quibble about, it would be the back cover blurb. The recommendation should be from “Dr M.R. Rajagopal, Padma Shri awardee” and not from (as the cover states) “Padma Shri Dr M.R. Rajagopal”. These awards are not supposed to be used as a prefix. Finally, the message of this book is too important for it to be restricted to English. It should ideally be translated into other Indian languages, perhaps starting with Marathi since Jerry Pinto is comfortable with both English and Marathi. It would be fitting if he did the translation himself. 

Dr Sanjay A. Pai is a Bengaluru-based surgical pathologist and amateur medical historian.

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