Patient autonomy and end-of-life care: A COVID-19 story

Every health care worker has a coronavirus 2019 (COVID-19) story. We all have intimately witnessed or experienced fear, courage, heroism, bereavement, failure, exhaustion, sorrow, and solidarity. And we each have a story—a moment that plays over and over in our minds—that in itself tells the story of the entire public health calamity. Each of these stories is a valuable perspective of our shared experience through this pandemic.

We each have a story—a moment that plays over and over in our minds—that in itself tells the story of the entire public health calamity.

My COVID-19 story came not from my redeployment shifts in the emergency department (ED), nor from caring for four ventilated patients sharing the same operating room where I would have otherwise been doing surgery. Rather, my COVID-19 story came from a brief phone call with a woman I’ve never met, in April 2020 at the height of New York City’s crisis. As the physician overseeing our hospital’s COVID Community Hotline, I received a phone call at home one evening from a volunteer medical student. The student had just ended a disturbing call with a woman who sounded to be in respiratory distress but refused to go to the hospital.

The patient, a 44-year-old woman with a history of asthma and pulmonary embolism, was nearly breathless when I called her. She had panic in her voice and could not speak in complete sentences without gasping for breath. But she was able to tell me that, despite her symptoms, she did not want to call 911. I explained that she was in a life-threatening condition, and I asked if I could call her an ambulance. Her response stopped my own breath: “But they won’t let my husband come with me, and I don’t want to die alone.” She was correct, of course; at that time, the city’s hospitals were not even allowing women in labor to be accompanied by their partners.

In a few words, broken by gasps, she had articulated the unspeakable pain and suffering of the entire COVID-19 crisis: the patients die alone. I had seen ED physicians scramble to call strangers to tell them their loved ones had passed. I had seen an intensive care unit physician hold his cell phone over a dying patient so that his children, shouting over vents and alarms, could tell him that they loved him before he died. If the patient on the phone with me was going to die, she too would die alone. So, I told her that I could call her an ambulance and ask that they allow her husband to go with her. She agreed.

But when I called 911 and gave the emergency medical technicians (EMTs) her address, I did not make that request. New York City’s EMTs braved enormous risk on the front lines of our mass casualty catastrophe last year, and they necessarily adopted strict protocols both to keep the people of our city alive and to survive themselves. They rightly would have refused any such request, and no New York hospital would have allowed a visitor to accompany a COVID-19 patient anyway. So, for the first—and I hope last—time, I was dishonest with a patient to do what I felt was in her best interests. Of course, a patient can decline medical treatment at any time, and an ambulance arriving at her doorstep would not commit her to any care or hospital admission against her wishes. Yet I could not escape that I was not forthright with a patient.

Lingering doubts

Did my call save her life? Did my call to 911 spare her from an agonizing death of air hunger on a kitchen floor while her husband, forever traumatized, watched helplessly? Or did I rob her of autonomy in her most precious final moments? Did I deny her the dying wish to hold her husband’s hand as she took her last breath?

In the era of COVID-19, we have faced a groundswell of painful questions and impossible choices regarding patient autonomy and end-of-life care. We will remember our COVID-19 stories and struggle with these questions for the rest of our lives, yet we may never arrive at answers. As we wage war in this crisis, we also must one day broker peace with these questions.

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