Twelve months ago, I received a call familiar to many migrants with relatives spread around the world. Bare Papa was gravely ill in intensive care in our Indian home town. In Hindi, Bare Papa (pronounced Ba-rey Papa) means Elder Father. He was a father figure to my dad after the boys lost their father and an anchor for our whole family.
My cousins reported that Bare Papa was looking worse every day. There must be a diagnosis, I pressed. We don’t know, they said glumly, in a story that is repeated across so many hospitals around the world. One glimpse of him on a video call and I sensed trouble. He was listless and gaunt, one limp arm hijacked by an IV. Take me home, he groaned through parched lips.
I gleaned that he had bronchitis but at 90, with impaired lungs and kidneys, the truth was more complicated. So when the doctors broached bronchoscopy and ventilation, I took the next flight to India and signed him out. The sheer relief on his face was unforgettable. At home, he was bedbound; when he spoke, it was to exult that I had snatched him from the jaws of death, an ironic way of thinking about my “healing” profession.
If he survived his brush with death, it was because his family mitigated the most brutal risk factor in old age: isolation. Their love and inclusion gave him the stamina to walk to his armchair from where he purveyed his world of children, grandchildren and great-grandchildren. Once, I answered his “urgent” call with a racing pulse only to be given the task of finding a husband for his beloved granddaughter. I assured him that my patients were my real emergency!
To my medical mind, the whole year was borrowed time but his unexpected recovery lulled the others into believing he would stay well. So when my cousins reported a sudden downturn, I saw it as the inevitable end. The hospital did a bevy of tests to confirm what no one was willing to state.
As his body faltered, I was dismayed to find him fed by a tube, hydrated by a drip and pumped with powerful antibiotics, diuretics and tonics. Screenshots of his wavering vital signs didn’t help.
My cousins asked me what they should really do. Bring him home, I said. Ditch the feeding tube. And the IV. Keep the oxygen. Let him rest. Show him love.
But my well-intentioned advice hit a snag. My cousins couldn’t fathom how a dozen costly drugs could be as futile as I claimed. They protested that while doctors were trained to be dispassionate, “normal” people equated eating with thriving – to “starve” him was unthinkable. And monitoring dismal vital signs was hard but wasn’t not knowing worse?
A cardinal rule of medicine is that one must be prepared to give advice and empathise when that advice is not readily taken. Sympathetic to their dilemmas, I gave my cousins space.
Bare Papa came home minus the tubes.
But then, in a stark demonstration of how important it is for trained palliative care professionals to support families making consequential decisions, a lightning strike of worry pierced the family as he became unconscious, and they pondered returning to the hospital. Their faith in doctors “to do something” was as moving as it was misplaced.
The doctors in our family who lived in wealthy countries longed for Bare Papa to have the touch of morphine he needed to take the edge off his terminal restlessness. Instead, we had no choice but to suffer with him.
Morphine has been on the World Health Organization’s model list of essential medicines since 1977, but it is nearly impossible to access in India.
Alongside economic gains, India has made many strides in healthcare. Maternal mortality has dropped 70% in the past 20 years. The widespread availability of sophisticated machines, world-class interventions and keen adoption of digital technology have been good for citizens and medical tourists.
During Covid, the Serum Institute of India was on impressive display as the world’s largest vaccine manufacturer. And now, it is delivering a game-changing malaria vaccine to Africa.
But when it comes to end-of-life care, progress has been depressingly slow.
Why should this matter?
India has the largest diaspora in the world: 18 million of its citizens live in other countries, 1 million of them in Australia.
When my sick patients in Australia yearn to be back home in India, I am usually supportive, but when I think they might need palliative care I caution against travel. This is difficult to say and hard to hear.
Of 1.4 billion Indians, 10 million qualify for palliation. Tragically, an estimated 25,000 (a staggering 20%) of annual suicide cases are said to be due to health-related reasons, including the failure to access effective palliation.
Kerala state is an outlier, as are scattered hospitals, but elsewhere in India (and for that matter in China and parts of Africa) access to opioids is close to nonexistent. The warrior of Indian palliative care, MR Rajagopal, attributes this to restricted supply, complicated regulatory barriers and a dearth of professional education, and hence confidence, in managing opioids at the end of life.
But a misplaced fear of opioid addiction and diversion rather than a nuanced understanding of its merits in palliation comes at the cost of patient suffering and that of all involved.
The “leave it to God” policy is no healthcare policy, but rather an impost on people at the end of life.
Fortunately, Bare Papa made the final decision by drawing his last breath at home. Along the way, I learned another lesson in grief. The right words to say are “I am sorry for your loss”, not “But he had a good life”. I made this mistake while consoling my dad and apologised.
My dad reflects that the message to draw from his brother’s experience was that when life’s mission is complete, one should depart in peace. Soon, our family will convene for the wedding that Bare Papa had happily blessed – indeed, his mission in life was complete. As for departing in peace, he is fortunate to have died quickly.
But for the millions facing a lingering and painful death, Indian medicine must step up.
Ranjana Srivastava is an Australian oncologist, award-winning author and Fulbright scholar. Her latest book is called A Better Death
