As a little girl I remember watching life’s unending procession from our second floor balcony overlooking Bombay’s busy Nepean Sea Road: Bauls whose soulful melody still rings in my ears, the fishmonger holding aloft fresh paaplets for housewives to examine, the raddiwala, the blind violinist, the boys with a chaddar into which we’d throw down a few coins for their Haj collection, the women bartering rice for old clothes. And the funeral biers.
Ram Naam Satya Hai, the mourners would chant, walking briskly, as if keen to offload the burden of their load. Sometimes the bier would be decorated with balloons and flowers and my mother would explain it was an old person who had died, a death worth celebrating at the end of a life well lived. Then, she’d admonish me for whiling away so much time on the balcony instead of doing homework or going down to play.
Some 40 years later, both the street and the city had new names. I was back in Mumbai because my mother was dying. She had turned 84 during a brief visit to the city in January this year and now I was watching her breathe, watching her struggle to remove the Ryle’s tube through which she was fed 200ml of nutrition from a tin box eight times a day.
I watched her subjected to a countless indignities as doctors and nurses poked and prodded, a life reduced to a series of numbers: oxygen saturation, creatinine, blood pressure, urine output, sodium.
The evening before she had fallen ill, she had met an old friend and they had sat on a bench overlooking Worli Sea Face, talking, laughing about memories and experiences that would soon cease to have relevance to anyone else. By the next morning she had stopped eating, by evening she refused to speak—or could not.
A dozen doctors of various specializations ordered tests, examined results and scratched their heads. In the end, the internist—the one conducting this elaborate orchestra—said she was suffering from multiple factors of old age, diabetes, impaired kidney, a not-so-great heart. He was a good man, a caring man, not yet old enough to be a cynic, no longer young enough to be unsure. Take her home, back to Delhi, he advised. There is nothing we can do for her here. Left unsaid was her actual ailment. It was mortality.
Over the next few weeks after we brought her back on a stretcher to Delhi, my mother clung on, fading slowly. Visitors came to say farewell, she looked at them in silence as they held her hand. I replanted her lawn, as if she would by some miracle suddenly get up and sit there to listen to birdsong.
At what point do you tell the doctors that you cannot bear to hear the struggling breath of your mother? How do you decide that it’s OK to feed her through a tube but not OK for doctors to cut a hole and insert a tube so that a ventilator can breath for her? Home or hospital? Dialysis or do nothing?
How do you decide the fate of a life? When that life belongs to a parent—ironically, the person who gave you life—the dilemma is unbearable. Does any human being have the moral right to decide? Even a child?
And then the worst question: Does wanting my mother to die quickly, unwilling to have her linger on and fade away make me a bad daughter?
The purpose of medical school, writes Atul Gawande in his best-seller On Mortality, “was to teach how to save lives, not how to tend to their demise”. Thanks to the massive advances in medical science, human beings now live longer and better and yet, “There’s no escaping the tragedy of life, which is that we are all aging from the day we are born,” writes Gawande.
My father had died of cancer nearly a decade earlier and my mother had insisted on living alone, growing older, physically frailer and mentally less certain with each passing year.
She would inject herself with insulin and forget to eat. She would spend her mornings asleep. At night, she’d eat oily parathas, forbidden to her. She had a few bad falls, though luckily no broken bones. She became more and more forgetful.
But who was going to tell her that she was no longer capable of living alone, of taking rational decisions about her life? And, more importantly, how to tell her this without diminishing her as a person?
Her doctor urged her to move in with me. I made yet another appeal: Do it because it will make my life easier, I said, not wanting to demean her inability to lead an independent life. She did not reply. But I knew what that stubborn pursing of her lips meant. She was not about to give up her freedom even in the face of death.
We know that the process of dying begins from the minute of our birth. And yet, it would be beyond morbid to be consciously acutely aware of this.
“As a society we’ve often said that death is an inevitable finality,” says Pinak Shrikhande, director, critical care medicine at Delhi’s Fortis Flt.Lt. Rajan Dhall Hospital. “Yet, we’re not at all open about discussing death within families.”
When it comes, as it must, end of life becomes a societal issue. “We want to do the best and we want to show that we are doing the best,” says Shrikhande. This desire to “show that we are doing the best” for our loved ones often takes precedence over their sustained suffering. “You don’t want to be seen taking the crucial decision of pulling the plug.”
Corporate hospitals are the immediate beneficiaries with beds filled with people trying to die. “End of life has been commercialized,” concedes Shrikhande. “But while corporate hospitals have benefitted from this mentality, they have not created it.”
Laws are not supportive of end of life either. For instance, once a patient is on a ventilator then it cannot be withdrawn in the hospital without a court order that must be approved by a three-member committee.
Doctors, too, are trained to save lives. “In an emergency, there is an implicit consent that you have to do everything to save the life of the patient,” says Shrikhande. This could mean even attempting a heroic surgery on a 75-year-old stroke patient. “Doctors don’t have guidelines on when to de-escalate care. There are so many grey areas where nothing is written, so they simply go by gut.”
Along with longer lives, modern medicine has also resulted in fewer quick deaths. “Healthcare was designed with diseases, not people, at its centre,” says palliative care physician B.J. Miller in a 2015 TED talk. He calls this bad design. We need, he says, “to rethink and redesign how it is we die”.
Shrikhande’s advice is simple: have a discussion in advance. How do our parents want to die? In a hospital or at home? With the maximum medical intervention or the least? What about organ donation? But, he warns, this is a discussion for families to take at an appropriate time, when the going is good, not when confronted with a sudden decline in a parent’s health.
“The experience of death is increasingly unknown to younger people with more and more parents dying in hospitals, away from sight,” says Mathew Cherian, chief executive officer of HelpAge India, a non-governmental organization that works with the disadvantaged elderly. “Most people want to die at home with their families and not in hospital ICUs. What they need is palliative care so that there is dignity in death.”
Medical science has ensured longer lives and India with its focus on its young “demographic dividend” will find that by 2050 its over-60 population will have increased from 8% of the population to 19%, finds a 2015 report by HelpAge India. Average life expectancy then will be 74 years. To measure how far we have come, consider that life expectancy at Independence was just 39.
At the same time, fertility rates will have declined from 5.9 children per woman at the time of Independence to 2.6 children per woman by 2050. What this simply will mean is more older people with fewer children to take care of them—and that’s just the impact on families without factoring in the implications on public healthcare that increased longevity will inevitably pose.
To cater to the elderly who lived apart from their children, Epoch Elder Care was started in 2012 to provide home care services. It would, for a fee, send staff to people’s homes to provide company and companionship to elderly parents—helping them Facetime grandchildren, buy groceries or accompany them to the bank. Today, Epoch runs two assisted living homes, one in Gurgaon and one in Pune, for seniors who require help with day-to-day living but are not yet in need of full-time medical attention.
The 12-room home near the Medanta Hospital in Gurgaon is already full. “Elder care is a sociological problem and not a marketing issue,” says Neha Sinha, a clinical psychologist who runs Epoch. “When we take people in, we are aware that we are frequently making a commitment for life.”
The service—private room with an attached bathroom, 24x7 nursing care, meals—doesn’t come cheap. A single room works out to Rs80,000 a month plus taxes. Yet, at least for those who can afford it, it offers the best alternative for children who live far away. “All of our residents depend on us for everything,” says Sinha. “Many have dementia and need specialized care and close supervision.”
Senior residential homes like Epoch could be the new sunrise industry. “While the concept of old age homes or retirement homes still hold a social stigma of abandonment attached to it, such mindset is slowly changing,” states a 2013 report on real estate trends by consulting firm EY. But more than the business opportunity, senior living, or spending out the rest of our years, is a social problem. Are we even beginning to think about how we want to get there?
Once we brought my mother back to Delhi, my sister and I decided to not put her on kidney dialysis. That meeting with her doctor, the one where we told her that we wanted to let my mother go without aggressive medical intervention was more difficult than we could have imagined.
At the back of my mind lurked the very Indian fear: what will the doctor think? Will she think I’m a bad daughter?
There was no guidance, no counsellor. A family friend, a doctor, said only this: “Be guided by your own conscience.” A friend’s mother, herself in her eighties, sent a message: “Do not put her in a hospital.”
So, stumbling, agonizing, unsure and weary, we drew up our checklist. Yes to round-the-clock nursing at home and the occasional doctor visit for palliative care. Yes to the feeding tube. Yes to oxygen supply. Yes, even to daily blood tests that would tell us just how rapidly her kidneys were failing.
But absolutely no dialysis. We were simply not prepared to take the risk of allowing my mother to die on a hospital bed, surrounded by strangers, bleeping machines and the white overhead light.
It was heart-breaking to think that during an occasional moment of lucidity—such as when she opened her eyes and called out to her dog or when she turned her head towards the window when I told her that her lemon tree had finally flowered—she might wake up on a hospital bed, confused and alone.
While we waited at home, I Googled what to expect. I read about the “death rattle”, that awful rasping sound that those close to death make at the back of their throat. There were questions to which I will never know the answer. What was my mother feeling? How aware was she? Was she in pain?
Then, just like that, early in the evening, I had come home and was in the shower when I got the call. “Come. Quick.”
My mother looked calm, eyes shut, as the doctor administered CPR. “I’m sorry,” she finally said placing a compassionate arm around my shoulders. And just like that, it was over.
Namita Bhandare is gender editor of Mint.
Her Twitter handle is @namitabhandare