Recently, when mother complained of chest pain, a bunch of tests and scans revealed that she had an aggressive type of lung cancer. In spite of the debilitating radiation and chemo therapy, she made a heroic effort to look her best, and wore the usual crisp cotton sari. Given her frailty, one could only imagine how much effort it took to get out of bed and groom herself to look normal. She survived on sheer will power, and a lesser woman would have given up and succumbed to the long list of medical maladies.
In spite of poor health, mother persevered to keep an eye on the household—the crazy cook, the moody maids, and the grumpy gardeners. Most importantly, she was out to disprove the proverb that wealth does not survive three generations. She agonized about the future of her guitar-strumming grandson, the sole male heir to the family fortune, who was more interested in extracurricular activities than studies. In such an overpopulated and fiercely competitive country, where only the brightest and the best can hope to enter the portals of prestigious universities, his poor scholastic performance was disconcerting.
The constant nausea and heartburn, side effects of the chemo, prevented mother from eating even simple items like rice and vegetables. As a result of poor appetite and drastically reduced stamina, she was emaciated. Although aware of her symptoms, instead of cutting back on the dosage of those toxic treatment regimens, the oncologist kept administering the chemo, in the false hope of a recovery. But hope was not a plan. It would have been preferable to stop all chemo and control her pain. At the very least, during the final few weeks of her life, she might have been nausea-free and enjoyed her favorites—dosa, idli or ice cream. But living in a society where everything possible was expected to be done to ‘save’ a patient, mother became a victim of the circumstances and suffered unnecessarily.
Very few patients stoically face a certain death. It is a rare patient indeed who refuses all treatment and awaits the inevitable end. Even the terminally ill patients with a severely limited life expectancy are eager to receive chemo and radiation. It is a sad commentary on our healthcare system that these patients are poorly informed. Time and time again they are told that aggressive treatment might miraculously reverse the course of their cancer. Most terminally ill patients and their families assiduously avoid conversations on death and dying. In a society where Faith supersedes rational and irrefutable facts, where the populace fervently believes that the good lord will help conquer the most incurable illnesses, it is a difficult task to convince patients that they have very limited time on this earth.
But, mother knew the score, and towards the end, she reluctantly acquiesced to her oncologist’s futile treatment regimen.
We live in a cynical and avaricious world where some oncologists do not hesitate to pump toxic medicines even into a dying patient’s blood stream. We live in a world where some oncologists administer exceedingly expensive drugs to terminally ill patients who are almost certain to pass in a day or two. We live in a world where Abraxane costs the government a whopping $16,700, and the doctor is paid $1000. However, a comparable treatment, Paclitaxel, costs the government a mere $201, but nets the doctor only $12 (The Economist, April 16, 2016). We live in a world where billing for procedures trumps compassion. Therefore, it is an uphill task to convince an oncologist to inform a terminally ill patient that any further chemo is not going to help. For many oncologists, it is an anathema to refer a terminally ill patient who has exhausted all treatment options to palliative care. However, it is an irrefutable fact that a timely referral not only alleviates the excruciating pain and suffering, but also saves millions of dollars (Being Mortal, Atul Gawande, 2014).
Best doctors and best therapy were of no avail, and mother didn’t get any better, in fact only got worse. At the end, with severe shortness of breath, she was rushed to the ICU. It was extremely sad to see her on the hospital bed attached to numerous tubes—tube in her mouth, tube up her nose, probes and tubes stuck in her arms. She was heavily sedated and even when she was awake, nobody was sure if she recognized people around her. But for all those machines, she would have faded away, much like a bright red hibiscus which closes up and withers in fading sunlight.
In the end, the machines could only do so much, and it was like installing a new transmission in a badly battered vehicle. She had fought and came out winner in a few battles before, but this last battle was entirely different and unwinnable.
The idea ‘Do Not Resuscitate’, i.e., prolong life by artificial means, is a controversial concept. Although legal, many patients and their families are either ignorant or disagree with DNR.
Grief-stricken as my siblings and I were, none of us even thought of talking to mother about what she really wanted at the end. But, in retrospect, knowing her independent spirit, she would have preferred to pass peacefully in her own bed at home, surrounded by loved ones.
The health care system is flawed. The Hippocratic Oath should incorporate that patients are entitled to pass peacefully, and terminally ill patients should not suffer the indignity of tubes down their throat. It was cruel to keep mother in that vegetative state. She would have preferred a dignified death.