How do you write about dying when you’re still trying to learn how to live? It’s a bit like writing about a blinking halogen light that shuts off even before it has achieved brilliance. It’s caught in a loop of attempting brightness and shutting down, light and dark.

You wish the halogen light blinded you and blue-grey clouds floated before your eyes, the kind you see when you’ve stared into the sun for too long. Then, you’d have something concrete to hold on to, something to write about. But dying is the great unknowable of our existence, just like the hours before our breathing finally stops.

As I read American surgeon-writer Atul Gawande’s Being Mortal: Medicine and What Matters in the End again, I kept returning to a line I’d written in a review of the book five years ago. What matters in the end is not how we die but how we live. Before we die, that is.

I kept wondering: What must the time leading up to our breath finally leaving us be like? How do we endure the pain of a terminal illness, the anxieties of leaving people behind, and the fear of the great unknowable? I kept thinking of severely ill Covid patients quarantined in ICUs, alone and deprived of physical touch. Could they say goodbye to their families in the little time they had left?

The great unknowable

Earlier this month, Gawande told the Financial Times that at his hospital – the Brigham and Women’s Hospital in Boston – they saved gowns for family members of Covid-19 patients, especially those nearing their deaths. “The dying have to have access to a family member. Just out of sheer humanity.” This even though many hospitals banned visitors because of the risk of infection or to preserve personal protective equipment (PPEs).

What Gawande said reminded me of the story of an American woman whose last interaction with her quarantined husband was on FaceTime. He was fighting Covid-19 and the doctors said they’d done all they could for him. He was approaching the great unknowable. She spoke to him from the screen of a cellphone someone took into his room.

He lay unconscious; she thanked him for love letters, coffee, their years together. She played their wedding song. His pulse weakened, then stopped. (I’ve paraphrased closely the version of the story told by doctor-writer Dhruv Khullar in a medical dispatch for The New Yorker. He’d first seen the woman’s video on CNN.)

I began thinking of the last hours of people with Covid-19 in Mumbai’s hospitals. The thing is: many didn’t make it to the hospital and died before they could even get a bed. Among them was 57-year-old Vishal Jangam from Ramabai Ambedkar Nagar in Ghatkopar East and 59-year-old Dilip Purohit, an administrative clerk at a small garment factory.

Mohamed Padvekar (name changed), 62, from Byculla, couldn’t find a hospital that would admit him initially and when he did find one, he couldn’t get a ventilator. Their anguish, it seems, didn’t stem from separation from family but had more to do with helplessness they felt from being failed by an unprepared and inadequate public health system.

There were others, in different parts of the country, whose last hours may have been anguished for similar reasons. Krishna Devi, a homemaker, was rushed to a Delhi hospital in an ambulance, but it had no oxygen. The hospital’s oxygen cylinder only lasted five minutes, said her son, Tilak Raj, a software engineer. “My mother died in front of my eyes,” he said.

Jamal Khan, a 41-year-old farmer, was misdiagnosed initially and tested positive only after he was shifted to a Delhi hospital. It was ten days after he had started showing symptoms and his lungs were badly damaged. He died soon after. Mohammad Ashraf Baba, a shopkeeper from Srinagar, didn’t get the kind of medical care he should have, according to his daughter Humera Ulfat. “[Doctors] never came close to my father to examine him,” she said. “Eventually, he died.

The final days

Why I am recounting these stories? Because since March, when the pandemic hit India, deaths from Covid-19 have remained a number that keeps increasing every day. Just a number. There’s a certain facelessness to the deaths and we seem to have become immune to their rising swell now. The poignant stories of the decline of the terminally ill and infirm in Being Mortal made me wonder whether the people behind these numbers were also struggling, like the characters in the book, to be the authors of the rest of their lives. Or is the pandemic making this impossible? We’ll have to visit the ICUs and ask the doctors and patients.

The anxiety and fear that initially surrounded the coronavirus – “It’s everywhere, I could be next!” – seems to have dissipated, and we’re relieved that restaurants are open for business and gyms will be too. Now that our individual liberties have been restored, we’re no longer locked in and IPL is on, Covid deaths have become just another statistic flashing on our phones. Nearly 700 deaths every day in India and almost 50 in Mumbai daily. Have we forgotten to collectively mourn the passing over into the great unknowable of so many?

Being Mortal showed me what life might be like near the end: the pain, the fear and the decisions about medical treatment. The book stirs you, shakes you up, makes you wonder about what’s really important when life is slipping out of you or someone you love.

Gawande takes us into the hospital and the hospice-at-home, and we encounter debility and slowly approaching death from the point of view of patients and their doctors. He says that modern medicine has, by insisting on conserving life and fighting against nature’s limits – inevitable death – failed many at the ends of their lives. Gawande appeals to the medical community to embrace end-of-life care with greater empathy so that the elderly and terminally ill may become the authors of their lives, and asks questions about what mortality means in the world of medicine.

It’s not an easy book to weather if the worldwide deaths from the pandemic are giving you nightmares. Or if you’re worried for your ageing parents. But it helps you glimpse, even momentarily, the anxieties that come up when death is near and the trade-offs people are willing to make to live a little before they die.

However, Covid-19, because of the sheer speed of its spread and rate of elimination, seems to have deprived health workers, patients and their families of the time they would otherwise have had to prepare for death. It is the slowly-becoming-known of our time, and governments, science and the world of medicine are racing to reduce the infection and mortality rates.

Ensuring agency for the dying

Doctors, Gawande says, do what they’ve been taught: saving lives. But do they tend to the demise of the elderly and the terminally ill? This is one of the central questions Gawande asks – and finds that most doctors don’t know how to do it. “The waning days of our lives,” he writes, “are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit.” For death cannot really be staved off despite the advancements in medicine and public health. And “lacking a coherent view of how people might live successfully all the way to their very end, we [in modern medicine] have allowed our fates to be controlled by the imperatives of medicine, technology and strangers.”

Not just that. Gawande says that we have allowed medical professionals to define the course of treatment for the terminally ill and decide how they should live out their last days. While the job of the doctors has always been to repair our health, they haven’t been able to understand our desire to “write the stories of our lives” even in of face of debility and old age, and to exercise agency over our bodies and our futures.

Over the course of the book, Gawande tells us about his father’s slow decline and eventual death from a rare, incurable tumour inside his spine. The very last time his father ends up at the hospital, he knows that all he wants is for his end to come at home. Gawande says, “In a hospital built to ensure survival at all costs and unclear how to do otherwise, he [my father] understood his choices would never be his own.” He wanted to wrest the control over the rest of his life from the hands of doctors into his own. There is much courage in this final decision to confront the reality of his own mortality.

As I read this book, I asked myself how Covid-19, for which there isn’t a cure yet and a vaccine is awaited, complicates the discussion. Can we raise questions about how we want to be treated for Covid-19 in hospitals and ICUs, how we want to make decisions about our care when access to treatment itself is contested, both in the US and in India? Must we submit ourselves to our medical institutions, their decision-making about our care, and our woefully inadequate public health systems? Do we really have any other choice right now?

Many people I’ve spoken to in Mumbai, especially the working poor, say that when it comes to the pandemic, things are not really in our hands. Uparwale pe nirbhar hai or Jo likha hai vahi hoga. It’s up to god or whatever is fated will be. Is this a fatalistic view or simply the reality of our unequal systems of care? I really don’t know.

All that said, medical professionals have been working non-stop on the frontlines of the pandemic, at a very high personal cost, sometimes death. But many have tried to make hospital quarantine for Covid patients and their limited time before death just a little easier.

Like the folks at the New York-Presbyterian Hospital, who wanted to make treatment more personal and mitigate the loneliness of their patients. They distributed hundreds of iPads so patients could see their doctors on video calls. Or this nurse in Santiago who played the violin for her patients in isolation, all the while making eye contact with them through transparent plastic sheets. She wanted to let them know that they were still connected.

The efforts of these health workers remind us that more is needed than drugs and quarantine for people being treated for Covid-19. We must ask ourselves, as palliative care specialists do, what is needed if the end is nigh and one is in the hospital, cut off from family, without oxygen cylinders or ventilators, without adequate healthcare. How can we comfort patients with near-death anxieties when we don’t necessarily have medical solutions to save their lives? Is this too much to ask in overburdened hospitals or of exhausted healthcare workers?

Not from what experience shows. They’ve done it without being asked to by their superiors. They’ve done it without a mental health professional being needed. They’ve done it because that’s what humanity demands.

What we can ask is for the medical establishment and the government to get their affairs in order. To correct the inequity and corruption in Covid care and make access to treatment possible. To not promise free vaccinations when a cure becomes available in order to secure votes in an election. To reach out to the elderly, who are crippled by hypochondria and the fear of landing up at the hospital – many have voluntarily jailed themselves at home. To rethink the 1.2 percent of GDP spent on healthcare.

And perhaps, as Gawande suggests, to train medical professionals not to behave in a Doctor Knows Best manner, but to involve patients in the path towards recovery, or tragically, in “the sustenance of their soul” when they near the end of their lives, when their halogen light finally goes out.

This series of articles on the impact of the coronavirus pandemic on publishing is curated by Kanishka Gupta.