M. R. Rajagopal's "Walk with the Weary" is a call-to-action for a Death with Dignity

"(The) primary duty of care (as officially defined in India) is to 'mitigate suffering. It is to cure sometimes, relieve often and comfort always.... There exists no exception to this rule.'"

This sentence comes about quarter into the book, "Walk with the weary : Lessons in humanity in health care" by Dr. M. R. Rajagopal. A telling statement that makes you think how Indian healthcare compares with what it should be as per the definition above? I think we fall very short. Current norms are more in line with - try to cure always, relieve when asked and comfort rarely.

Padmashri Dr. M. R. Rajaopal, widely regarded the 'Father of Palliative Care' in India, has many achievements to his credit, the foremost of which is his stellar work in the area of Palliative Care. He was instrumental in the development of Palliative Care government policy in the country. He is the Founder and Chairman of India's most reputed Palliative Care Institute, Pallium India.

The book is a recounting of the situations of several of Dr. Rajagopal's patients over the years through which he brings out beautifully, often poignantly, the cultural issues that exist around Palliative Care in the world today. His mischievous use of humour at times (sample this - The reluctant families joined the modest ceremony (there was no wedding feast!), which had all the cheer of an average funeral), serves to make the narrative less intense. But make no mistake, this book is a reminder that we will all have our tryst with the Grim Reaper at some point in time. How that tryst turns out is unfortunately, rarely in our hands.

That is where, Dr. Rajagopal argues, brilliantly, about the need to treat the patient, not the disease. "This kind of disease-focused treatment has become the order of the day. It ignores human suffering and concentrates its attention on a beating heart, ventilated lungs or a functional kidney even when a cure is not possible. The voices that describe the incongruity of it are too few and far between."

Medical science has become too focussed on organs and their working and less on the well-being and most importantly, the wishes of the patient. ICUs are where many people end up spending their last few days. "...when they need a human touch, companionship of loved ones and rational measures for the management of pain, breathlessness, delirium or other symptoms, they are condemned to rigorous solitary imprisonment in air-conditioned intensive care units (ICU)."

Dr. Rajagopal goes on to give some terrifying facts about ICU stays.

"Such disconnection comes to be at its worst when an elderly person is transferred to an intensive care unit. Delirium, which can progress to agitation, happens in up to two thirds of the elderly spending more than a day in an intensive care unit. Then they get tied up so that they do not pull the tubes and wires out. Nothing could be worse. Physical restraint increases the chance of delirium by as much as 44 times."

Dr. Rajagopal estimates that despite all the progress Medicine has made in the field of Pain Management, only about 2-4% of Indians have access to Pain Management therapies. The rest suffer needlessly.

Who is to blame for this sorry state of affairs? "You and I cannot shift the blame to “governments” and “systems” and escape from the responsibility. When millions are in cruel, needless pain because we fail to adopt obvious and simple inexpensive solutions to the problem, the blame rests squarely on every healthy citizen in every democratic country."

In the last chapter of the book, "Celebrating life; celebrating death", Dr. Rajagopal gives us a peek into his mind. It is a fitting end to the book. Naturally, the reader would like to know the author's personal thoughts about death. He hopes his family will respect his wishes and not "drag me along in the direction that they decide on ....(because) a beating heart is more valuable than a soulless existence....I fervently wish that I am not imprisoned in a cold intensive care room, isolated from my family when I need them most."

It is unforgivable that India does not have a legal provision for Advance Directives. Such a system would put in place a legal mechanism by which an individual would sign a document which would state explicitly how they wish to be treated in case they are not fit enough to make their wishes known. Things like whether they should be connected to a ventilator, or be given antibiotics, whether they should be revived in case their heart stops beating and so on. Atul Gawande has talked about it in his book, "Being Mortal: Medicine and What Matters in the End".

Currently, if an individual is in such a position in a hospital, their family has the ultimate authority on the way forward. Why should a family get to decide and not the individual? This results in families unknowingly inflicting torture on their loved ones against their wishes in their last days. Instead of dying peacefully at home with their family around them, they die alone in a cold ICU connected to gazillion different machines and tubes inserted in every orifice of their body, with broken ribs as a result of revival attempts.

What could be more barbaric?

Personally, I always worry about my end. How will it come? Where will I be? I have told my family to absolutely not move me to a hospital if I am not in my senses. But who knows how they will react to such a situation? Will the possible guilt in the future of 'not having done enough' make them disregard my wishes? I hope not.

People who have been treated by doctors like Dr. Rajagopal are truly blessed. They have been fortunate to have a man dedicated to the cause of reducing suffering. This book should be mandatory reading for all healthcare professionals and anyone who has an interest in humane healthcare.


Anonymous said…
Why not have a discussion about euthanasia, why does it need to reach a stage of no return. To live and to die with dignity should be discussed. What is free will at the the of the day? Should chat about this someday.
Parth Wankhede said…
Truly thought provoking.
I can’t wait go through the book soon. I had the luxury of having listened to his talk a few years ago at MD Anderson Cancer Center. I vividly remember his famous quote: Treat the patient and not the disease. I totally suppor his contention that patients who are suffering from pain should die with dignity. Kudos to Dr, Rajagopal and his esteemed team for their exsemblary palliative care in India.
Moshe Strugano said…
Despite all the advancements in medicine related to pain management, according to Dr. Rajagopal, only about 2-4% of Indians have access to pain management medicines. Others endure needless suffering.
India does have ancient foundations for dignified exit of "samadhi" (समाधी) and the "vanaprasthashrama" (वनप्राष्ठाश्रम).

For those who can afford, there is http://dignitas.ch/index.php?lang=en

Famous author Terry Pratchett had done a documentary: https://www.youtube.com/watch?v=xsvwhuOSApI
Kamal D Shah said…
Thank you for the links BloggerGodfather!
Anonymous said…
Sort of related - when my no late father had his triple bypass in 2015, I was impacted by anxiety about his life and read and watched much about the matter of death.

This book by Irvin Yalom https://www.amazon.in/Staring-Sun-Overcoming-Terror-Death/dp/0787996688/ was impactful.

Worth a read.