In the midst of a busy Monday clinic, I field calls from the nursing facility in India where my aunt is slowly dying. The young doctors there are traumatized by our family’s refusal to have her admitted to a hospital. I have become their counselor and guide.
My aunt was a mother to many nieces and nephews, despite having no children of her own. Over the years, I watched her keep vigil at a sick godson’s bedside, pack lunches for a visiting niece, care for her adopted granddaughter, and stay ever ready for shopping trips, lunches, and highly exaggerated and hilarious retellings of family drama. When my mom was alive, the two of them would watch TV shows together and trade juicy tidbits of family news.
Slowly, she was left alone, first when her husband died, then her siblings. She needed nursing care, and her many family members had her admitted to a skilled nursing facility. For a while she still visited family for festivals and outings, but she gradually lost her hearing, then her speech. Once she could no longer communicate, and seemed confused and lost, the family drifted into their own busy lives and routines, until she grew sick, and I, the doctor-niece, my siblings, and cousins had to guide what we should and shouldn’t do for her.
In America, only about 30 percent of people die at home. In India, more than 65 percent of deaths occur outside hospitals. Our family was united in the decision not to escalate her care or admit her to a tertiary hospital.
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At the nursing home, she was receiving IV fluids, antibiotics, tube feeds, and oxygen. But she was unresponsive, even though her vital signs seemed stable. The doctors and nurses, unsettled by our refusal to admit her, kept calling me. What would a hospital do for her, I would ask gently, besides intubation and ICU care, which we didn’t think she would want?
“She isn’t producing urine,” they would say. “We’ve already given fluids and a diuretic,” I would answer.
The end is near for my ninety-three-year-old aunt. But we medical professionals know only how to medicalize dying. Let us dialyze her. Stick a chest tube in to drain the pleural fluid. Put her on BiPAP or intubate her. Get an MRI.
Why? What outcome are we even hoping for?
It is difficult to make these decisions for an aunt. But through many conversations over the years, we knew her life had lost meaning to her. She carried a quiet dread of her own existence. She disliked hospitals and often grew agitated whenever she’d had to be admitted in the past.
However, who are we to judge whether a life still holds meaning? And yet we do it every day, in every ICU, without ever naming it. We measure a life by its labs, its saturations, its urine output, as if meaning were something that could show up on a screen or panel. Meaning is not in these numbers. It is in the godson’s bedside, the packed lunches, the family gossip. When those things are gone (when hearing goes, then speech, then the ability to know who is in the room), what exactly are we preserving when we preserve the body?
I think of medicine’s oldest promise, to preserve life, and I wonder when that promise quietly became a promise to prolong dying instead. We can keep a heart beating, a chest rising and falling, long after the person who lived inside that body has already, in every way that matters to her, left. We call this saving a life. Sometimes it is. And sometimes it is only postponing a death that has already begun, at a cost the person herself would never have chosen to pay.
I do not know when, exactly, the right time to let go arrives. I don’t think there is a formula for it: no number of organ systems failing, no cutoff on a ventilator-free-days calculator. What I do know is that it is not a moment we get to discover in the ICU, under fluorescent light, with an anxious doctor asking whether to intubate. It is a moment which should have been decided long ago over lunches and ordinary conversations. My aunt told us, long before she could no longer tell us anything. We were only asked to remember, and to have the courage to honor it when it became inconvenient, when the machines in the next room made refusal feel like abandonment.
There is a particular kind of loneliness in being the doctor in the family. I am the one who has to say, gently and more than once, that we are not doing this. I keep second-guessing myself, because after all I am trained to save lives. Today between seeing patients, I wept, I talked to my family members, and I held firm. But I have come to think that this is not a burden so much as a last gift I can give her, the thing my medical training actually qualifies me to offer, which is not another treatment, but permission. Permission for everyone to stop being afraid of her dying and start simply being with her while she does it.
My aunt is still alive as I write this, unresponsive, breathing on her own, surrounded by people who love her, who come to pay their respects, to thank her for being their other mother.
Should we intervene and treat every problem? Should we try our best to save every life? Or should we, as doctors (and as family), do what we are actually meant to do: alleviate pain and suffering, honor the person who is disappearing before the body catches up, and help people live their best lives until the inevitable end?
I don’t think these are rhetorical questions. I think we owe every person we love, and every patient in our care, an honest answer, decided before the crisis, revisited as things change, and honored even when it is hardest to remember them, and let them be enough. And we have to fight our terror and fear that we didn’t do enough. Because at the end our presence and love are enough.
Humeira Badsha is a rheumatologist.
