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I hadn’t hugged Mom for 6 weeks. But then again, there were millions of daughters around the world who could say the same since coronavirus disease 2019 (COVID-19) consumed and changed our lives.
Mom was like so many older patients I’ve taken care of for more than 25 years: frail, vulnerable, but fiercely independent and living at home. She’d been hospitalized only 5 times before: to deliver her daughters and for an aortic valve replacement. When I called her on Mother’s Day this year, she was short of breath and said she had slept terribly. She couldn’t lie flat or speak in full sentences. Mom thought her shortness of breath was an asthma exacerbation, and she only needed a course of steroids, but one of my sisters, who lives nearby, and I weren’t so sure. We wanted to keep her out of the hospital; we’d kept her away from COVID-19 so far and were worried about exposure if we brought her in. But I was well aware that many serious illnesses were being missed as patients stayed away from medical settings.
I live 150 miles away, but when it became clear that Mom was not getting better over a few hours, my sister drove to her house and called an ambulance. Donning a mask and gloves, she helped Mom pack some clothes. The emergency medical technicians put our mother in an ambulance and reported an oxygenation saturation of 80% on room air. My sister couldn’t join Mom in the ambulance or meet her in the emergency department. As it drove off, she couldn’t help but think it might be the last time she saw her. And then Mom was gone. In normal times, we’re a family who takes turns sitting at the bedside when someone is sick. We keep a mostly humorous vigil and prop the patient and ourselves up. But Mom was being sent into illness by herself. The typical uncertainty and anguish of an ill family member was compounded by a most vulnerable aloneness.
When the ambulance pulled away, it seemed she was going into the abyss without us. We envisioned arriving at the emergency department and confronting masked and gloved hospital staff forbidding anyone but patients and frontline workers from entering. Could we cajole or beg to sit next to Mom? It wouldn’t happen.
As I heard about the emergency department workup from my home 2 states away, it sounded familiar, from the hundreds of patients I’ve sent in. A long wait, a lot of tests, no bed available for 20 hours. As a physician, I understood. It’s the way it is. But as a daughter I still wondered why I couldn’t at least be by her side, to talk to the staff, to advocate, to adjust her blanket because she is always cold. Instead, I plaintively appealed to the clerk for word from the nursing staff and waited anxiously for a call. The inherent uncertainty that always accompanies illness was magnified by distance and vicarious loneliness as my mother waited on a gurney.
After being admitted, a day of bloodwork, diuresis, and monitoring unfolded. Then a frantic call came: unresponsiveness, bradycardia, hypotension, dopamine urgently hung. And next, a fusillade of questions. Did we want a temporary pacer placed in the cardiac catheter lab, transfer to the intensive care unit, lifting of the DNR/DNI (do not resuscitate and do not intubate) order that was in place? As her consciousness ebbed, my brave mother mumbled to the bedside team, “I’m ready to die,” but they still requested immediate clarity from me, her medical power of attorney, given the sudden change. I appealed for a moment for a conference call with my sisters, where, with pressured speech, we confirmed that she did not want care escalated. I appealed for the vasopressors to continue on the floor while I drove 3 hours to the hospital, where one sister already had arrived. Finally, I was able to sit with Mom because her management had been changed to comfort care only. One last moment to say goodbye. Mom was dying, but finally I could hold her because in the “COVID-19-era,” as we all say so often now, family can join the patient only when death is near.
As my sister and I gathered in Mom’s room, and other family members joined on the phone, we reached out to the hospital priest to administer last rites. My Catholicism is lapsed but deep-rooted, but my mom remains a believer, and the sight of the solemn man in the clerical collar, carrying a book of prayers, reassures us at the end of life in a way no other ritual can. We waited for him to walk through the door as we sat with Mom, but it soon dawned on us that he wouldn’t be coming either. Instead, the phone rang. Another convention upended by COVID-19: telephonic last rites were given. If I could manage hypertension over the phone, as I had been doing for 6 weeks, why couldn’t we pray on a conference call? It worked: the timeless words of reassurance given, with my sister administering divine unction on our mother’s forehead on the priest’s behalf.
A sense of peace descended in the room when he finished. The vasopressors were stopped, and we turned off the lights, growing quiet while we waited. By this time, Mom had tested negative for COVID-19 twice. I got in bed with her that night and held her for the first time in weeks. I knew she wouldn’t infect me. Since she was dying, I didn’t care about my risk to her.
But Mom didn’t die. She slept soundly. Despite comfort care orders, the next morning her vital signs were taken, showing remarkable improvement. Although not normal, she had stabilized overnight. What was initially thought to be sepsis or another myocardial infarction likely was a vagal episode superimposed on some hypovolemia. After more discussions, we decided to restart the noncritical care she had been receiving the day before and suspend comfort-only measures.
How grateful we were that she lived and that she was improving. But the cruel COVID-19 irony declared itself again. Now that she was getting better, we were once again banished from her side. She was alone again, fighting hard, but alive.
Mom is back home, gaining strength every day—battling her chronic illnesses, but like all of us, still menaced by COVID-19 for the foreseeable future. We made the call to bring her in for a serious but treatable illness while risking infection with COVID-19 but questioned whether we should have until she was placed in the ambulance. Of the cruelties associated with the pandemic, and there are many, the most ironic was that the only way I could be close to Mom was when we almost lost her. We are starved for physical contact with our loved ones, many of the most vulnerable, who must distance like their lives depend upon it. Because of course they just might.
Corresponding Author: Katherine C. McKenzie, MD, Yale Center for Asylum Medicine, Department of Internal Medicine, 367 Cedar St, Yale School of Medicine, New Haven, CT 06510 (email@example.com).
Published Online: June 30, 2020. doi:10.1001/jama.2020.11882
Conflict of Interest Disclosures: None reported.
Additional Contributions: I thank my mother for allowing me to share this story.
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McKenzie KC. A Cruel COVID-19 Irony. JAMA. Published online June 30, 2020. doi:10.1001/jama.2020.11882
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