Sri.Nagaraja Shastri was a musician and dramatist, well-known and respected in his youth. Because of intermarriages between cousins, which is quite common in south India, he was uncle to three generations - my husband's grandmother's, my father-in-law’s and ours. When he and our aunt became too old, they moved to our village so they could be cared for by his daughter. While the village did not have top-notch medical facilities, the old couple didn't seem to need them either, as they were still quite independent and healthy in spite of their age.
The first (and only) sign of problem we saw was many months later, when Nagaraja mama felt easily out of breath. He was taken to a doctor in the next village, who said that he couldn't do anything as he had bradycardia, and he had to go to Bangalore if he wanted treatment. Nagaraja Mama was eighty-six years old and had never been admitted in a hospital. After much deliberation, we brought him to Bangalore and admitted him to a hospital to see what the doctors could do.
It was very clear that he was diminishing by the hour. That didn't prevent the ICU doctors and nurses from putting him on intravenous medication right away, for bringing the heart rate up. He was trying to pull the IV needles out, so they bandaged his fingers together so he wouldn't have an opposing thumb to pull the needles with. He was angry and with his slurring and incomprehensible speech he was scolding the nurses for taking away his freedom. After multiple tests the doctors came to the conclusion that the only way to keep him alive would be to put him on a pacemaker.
Our aunt, on consulting about this, was clear that she didn't want her husband to go through any more pain, and wanted to let him be. Without a pacemaker, he died on the hospital bed a day later, with only the ICU nurses around him. A question that was gnawing at my heart for a long time, was whether we made a mistake in not opting for a pacemaker. Secondly and more importantly, I was thinking whether we made a mistake in bringing him to the hospital at all.
We are confronted with choices all the time. We seem to perpetually hit the forks that diverge on yellow woods, and the path we take makes all the difference. In medicine, they are choices that decide life and death, or Scylla and Charybdis. With the modern medical technologies available, life could be Scylla. It is these hard choices that Dr Atul Gawande talks about in his book “Being Mortal”. Through many case studies and personal experiences, he tries to educate patients and their loved ones about the questions they would need to ask and get answers to, before consenting to treatments that can wreak havoc on the quality of their lives.
Reading this book required courage from me. I have been brought up in a culture where death can but be the next step to liberation; however, talking about my own death is inauspicious. To read this book, I had to confront my own probable sickness and eventual mortality. Through the course of the book, I had to ask myself tough questions - what would I do, what would I have to do if I were in the patient's shoes, or God forbid, in the caregivers’ shoes?
I have been a fan of Dr Gawande’s writing for years. Even if it is not a subject I am not frightfully interested in, (Obamacare vs Trumpcare, for instance), his writing is capable of grabbing and sustaining attention. Being Mortal is about medical facilities of today that let terminal patients live out the remainder of their lives in peace without subjecting their bodies to more pain, especially if the pain is not going to bring about any improvement in the quality of their lives later.
Consider another case. My granddad had had a paralytic stroke at a very young age, probably due to an infection. He had regained the use of his arms and legs later and was active for a long time. However, he had a second stroke which was debilitating. He survived that too with treatment. When he had a third stroke a few years later, the doctor gave up. He asked my parents to take care of him as well as they could for the rest of his life. A few months later, my taata passed away in his own house, with his family around him.
Dr. Gawande cites statistical studies to prove that providing hospice care to terminally ill patients significantly improved their quality of life. For instance, hospice patients who stopped chemotherapy treatment lived 25% longer and had far more fulfilling lives than the ones who underwent chemo. He analyses the fact that 25% of insurance spending goes for 5% of people who are already on their deathbed. Why not divert it to hospice care which will probably be more helpful for patients than more needles and scalpels and isolation?
Of course, everything is a challenge, especially in our country. The first problem is that of greedy hospitals. There have been instances of hospitals performing surgeries on dead bodies to milk insurance money. How do we even get these hospitals on board for something like hospice care?
The second and equally difficult challenge would be to confront the concept of mortality. We have not learnt that, in spite of studying scriptures day in and day out. But if we don't take the first step, who will?