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The Pandemic Should Change the Way We Talk About Dying

My patients and their families are facing the sudden decline that can occur in people with COVID-19, and many are not prepared.

The Atlantic

I am a resident emergency physician in New York City, and I’ve lost count of the number of times I’ve had to pick up the phone to inform the family of a patient with the coronavirus that their loved one was close to death. Recently, when an elderly woman arrived with what my colleagues and I identified as severe COVID-19, her prognosis was grave. I went to the ambulance bay, away from the cacophony of the emergency department, to call her relatives to tell them that even our most advanced interventions would not help her. The news was understandably difficult to absorb. The family reflexively asked us to “do everything,” rather than heeding the gentle recommendation that we focus on preserving her comfort.

We placed a tube in her throat to connect her to a ventilator, inserted catheters in her veins to administer medications that would sustain her heart, and performed chest compressions to temporarily supply blood to her vital organs. Our team tried for 45 minutes to resuscitate the patient as her lungs and heart gave out.

The number of coronavirus cases in New York City has declined, but COVID-19 is on the rise in many other states. Doctors across the country are in the same situation I was in just a few weeks ago—overwhelmed by a large number of patients whose conditions deteriorate rapidly, and responsible for guiding relatives who must make incredibly important decisions over the phone. I wonder whether people are receiving the type of care they truly wish for in their final moments of life and what can be done to preserve a dying patient’s autonomy during this pandemic. Advance directives are one of the most important gifts people can give to their loved ones before they die. But few people actually have them in place.

Discussing our own death with those we love and with health-care providers, let alone confronting it ourselves, is difficult. Yet death is a part of life, and planning for it can help those you love.

My family’s confrontations with unexpected death inform the way I think about caring for critically ill patients. When I was 9, complications from a perforated intestine, sudden lung failure, and multiple strokes nearly killed my father. In the face of tremendous odds, he survived to lead a semi-independent life, before dying from a heart attack 15 years later.

That experience shaped how my mother and I approached her own advancing liver disease as I entered adulthood. We took time to discuss what it meant to her to be alive: to laugh with others, share a drink or meal together, and meaningfully interact with the world. She decided that, if her condition was irreparable, she wouldn’t want to be kept alive on life support. Days before she was supposed to board a flight to New York City for specialist care, she suffered a massive stroke. A helicopter transported her to a hospital with neurosurgical capabilities as I rushed to be with her.

When I arrived, she was different, not “there”—dependent on the same machine to breathe and medications that my COVID-19 patients are now on. Even so, her heart kept pumping as her breathing was maintained by the ventilator.

I was an emergency medical technician at the time, able to grasp the reality of her dire condition, and yet I still doubted myself. As her only child and legal next of kin, was I to allow her to die when there was even an infinitesimal chance that things could be different? Could she survive like my dad did years before?

I didn’t have to make any of these heart-wrenching decisions. My mom had prepared me for the worst day of my life. I was equipped with her advance directive, stating that after a short trial of invasive measures, she did not wish to remain on life support. She was made comfortable with medications. After the machines were disconnected and her heart stopped beating naturally, doctors did not perform chest compressions or any further interventions. For the rest of my life, I’ll live in gratitude for her last, invaluable gift—readying us both for her death before it happened.

Six years later, my patients and their families are facing the sudden decline that can occur in people with COVID-19, and many are not prepared. Before the pandemic, my colleagues and I conducted end-of-life conversations or delivered bad news over the phone only in very rare circumstances. I would take a patient’s family to a quiet room, sit face-to-face with them, and offer a hand to hold. Now the comfort I can offer the family, in some cases living mere blocks away, is limited, since relatives are rarely allowed in the hospital during coronavirus surges. Such restrictions exist for everyone’s safety, but they can make end-of-life decisions that much more difficult. When family members see the physical condition of their loved one, that’s often when the gravity of an acute situation truly sinks in. Without witnessing this reality, disbelief is common. “You can’t be talking about my dad,” one family member said to me over the phone. “There’s no way you have the right person. Please tell me this is a mistake.” No one should be making decisions about end-of-life care under such stressful circumstances.

In the absence of an advance directive, physicians always “do everything” to save someone’s life; it is our ethical and legal mandate. But in the final days or hours of an illness, when the body is permanently failing, disrupting the dying process without an advance directive in place can feel especially troubling. CPR is not like it is in the movies. Effective chest compressions, for instance, regularly break ribs. Invasive measures are justified when a patient has decided that they want them—and many patients choose that route. But they aren’t what everyone might wish for as they lie dying. When I know a patient’s wishes, I can work with a family to achieve them, even over the phone. In the end, I want my patients to die with dignity, whatever that means to them.

End-of-life conversations are hard. Yet the coronavirus is with us, and we should use this period of collective grief and suffering to reflect and plan. A patient’s wishes, written in the form of an advance directive and made known to those who would make decisions for her in the event she’s unable to, can empower those she loves most and offer some certainty during one of the most challenging times in their life.