TTwelve months ago I received a phone call that is familiar to many migrants with family members spread all over the world. Naked Daddy was seriously ill in intensive care in our Indian hometown. In Hindi, Naked Daddy (pronounced Ba-rey Papa) means Older Father. He was a father figure to my father after the boys lost their father and an anchor for our entire family.
My cousins reported that Naked Daddy looked worse by the day. There has to be a diagnosis, I insisted. We don’t know, they said somberly, in a story repeated in so many hospitals around the world. One glimpse of him on a video call and I sensed trouble. He was listless and thin, one limp arm hijacked by an IV. Take me home, he groaned through parched lips.
I understood he had bronchitis, but at 90, with compromised lungs and kidneys, the truth was more complicated. So when the doctors suggested bronchoscopy and ventilation, I took the next flight to India and signed him off. The sheer relief on his face was unforgettable. At home, he was bedridden; when he spoke, it was to cheer that I had snatched him from the jaws of death, an ironic way to think of my “healing” profession.
If he survived his near-death experience, it was because his family had mitigated the most brutal risk factor of old age: isolation. Their love and inclusion gave him the energy to walk to his armchair, from where he could fulfill his world of children, grandchildren, and great-grandchildren. I once answered his “urgent” phone call with a racing heart, only to be tasked with 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 healthy. So when my cousins reported a sudden relapse, I saw it as the inevitable end. The hospital ran a bunch of tests to confirm what no one wanted to say.
As his body wobbled, I was horrified to see him being fed through a tube, hydrated through an IV, and pumped full of powerful antibiotics, diuretics, and tonics. Screenshots of his faltering vital signs did little to help.
My cousins asked me what to do Real do. Take him home, I said. Throw away the feeding tube. And the IV. Keep the oxygen. Let him rest. Show him love.
But my well-meaning advice backfired. My cousins couldn’t understand how a dozen expensive medications could be as pointless as I claimed. They protested that while doctors were trained to be impartial, “normal” people equated eating with thriving—“starving” him was unthinkable. And keeping tabs on poor vital signs was hard, but wasn’t not knowing worse?
A cardinal rule in medicine is that one must be prepared to give advice And showing empathy when that advice is not readily followed. Sympathizing with their dilemmas, I gave my cousins space.
Naked Daddy came home without the tubes.
But then, in a stark demonstration of how important it is for trained palliative care professionals to support families in making important decisions, the family was struck by a bolt of concern when he fell unconscious and they considered returning to the hospital. Their trust in doctors to “do something” was as moving as it was misplaced.
The doctors in our family who lived in rich countries longed for Naked Daddy to get the morphine he needed to take the edge off his terminal restlessness. Instead, we had no choice but to suffer with him.
Morphine is on the World Health Organization’s list model list of essential medicines since 1977, but it is virtually impossible to access it in India.
Besides economic gains, India has also much progress in health care. Maternal mortality has fallen by 70% in the last 20 years. The widespread availability of advanced machinery, world-class interventions and rapid adoption of digital technology have benefited citizens and medical tourists.
During Covid, the Serum Institute of India has been impressively seen as the world’s largest vaccine manufacturer. And nowdelivers a groundbreaking malaria vaccine to Africa.
But when it comes to terminal care, progress has been woefully slow.
Why would this be important?
India has the largest diaspora in the world: 18 million citizens live abroad, of which 1 million in Australia.
When my sick patients in Australia want to return to their home country of India, I am usually supportive, but if I think they need palliative care, I warn them against travelling. That is hard to say and hard to hear.
Of the 1.4 billion Indians, 10 million are eligible for palliation. Tragically, an estimated 25,000 (a staggering 20%) of annual suicides are believed to be due to health reasons, including lack of effective palliative care.
The state of Kerala is an exception, as are its scattered hospitals, but elsewhere in India (and indeed in China and parts of Africa) access to opioids is virtually non-existent. warrior of Indian palliative care, MR Rajagopalattributes this to limited supplies, complex legal barriers, and a lack of professional training, and therefore trust, in dealing with opioids at the end of life.
But one misplaced fear of opioid addiction and distraction rather than a nuanced understanding of its benefits for palliative care comes at the expense of the suffering of the patient and all involved.
The policy of “leave it to God” is not a health care policy, but a burden on people at the end of their lives.
Happy, Naked Daddy made the final decision to breathe his last at home. Along the way, I learned another lesson in grief. The right words to say are “I’m sorry for your loss,” not “But he had a good life.” I made this mistake while comforting and apologizing to my father.
My father ponders the message he could take from his brother’s experience: when the mission of life is accomplished, you must leave in peace. Soon our family will gather for the wedding that Naked Daddy had blessed happily – indeed, his mission in life was accomplished. As for passing away in peace, he is fortunate that he died quickly.
But for the millions of people facing a slow and painful death, Indian medicine must take action.