COVID-19 Communication—The Need for Humanity, Empathy, and Grace | Humanities | JAMA | JAMA Network
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A Piece of My Mind
February 23, 2021

COVID-19 Communication—The Need for Humanity, Empathy, and Grace

Author Affiliations
  • 1Department of Family Medicine, University of Michigan Medical School, Ann Arbor
JAMA. 2021;325(8):725-726. doi:10.1001/jama.2021.0119

On Sunday, November 8, my 69-year-old mother was taken to the emergency department of her local hospital after fainting. She tested positive for coronavirus disease 2019 (COVID-19) 3 days prior and was feeling quite ill. Following her admission, she gave me one job—to send daily updates about her condition to a group of friends and family members. She felt that I could translate the oft-complicated medical information into digestible bits and contextualize this for the myriad recipients. With her request, I became the family’s sole source of information, a mini chief medical information officer, sending out information to about 22 people. My mother’s instructions were clear: send twice-a-day updates on her condition.

After sending my first update, on Sunday evening, the response I received, though well-intentioned, was poorly executed.

“Did you know that in a study published by JAMA this Monday, physicians in Italy reported that 90% of 1300 critically ill patients with COVID-19 were intubated and put on a ventilator; one-quarter died in the ICU; 58% were still in the ICU, and 16% had been discharged?”

I tried to receive the message as it was intended—a show of concern for my mother. Nevertheless, I found it unsettling. I had read these articles and I knew the statistics—as a cancer survivor with an autoimmune disease my mother’s outlook was grim. I took a deep breath and replied, “Thank you for your continued concern, we know how much you love her.”

Responses to my daily updates grew more disconcerting. Three days after she was hospitalized, my mother was struggling to breathe on 100% oxygen. Suddenly everyone was an armchair intensivist.

“My neighbor’s girlfriend’s friend is a nurse and says a lot of people have oxygen saturations in the 70s for days. She's even had a patient 'sat’ in the 40s and do just fine.”

There were requests for blood levels and the type and dosage of her antibiotics. There was an abundance of medical information—but a scarce amount of empathy. My mom’s condition worsened.

“What about the latest experimental drug—the one the president got?”

My replies grew curt: “She’s being given an appropriate course of medications.”

By this time, I had developed an overwhelming desire to scream at the top of my lungs, “ARE YOU KIDDING ME?” “QUIT WATCHING TV!” “QUIT READING MEDICAL JOURNALS!”

Suddenly my small “communications” task had become a full-time job. The unsolicited medical advice and requests for specifics about my mother’s treatment was taking up precious time. I knew I needed to reserve my energy for the communication with her physicians and other health care professionals.

By Thursday, COVID-19 day 7, my mom was transferred to the intensive care unit (ICU); things were not going well. I jumped into my car and drove the 18 hours to Florida, setting up a “base camp” in a hotel directly across from the hospital. Everything became overwhelming. A simple drive to the store to get water and necessities revealed a COVID-19–optional world, where wearing a mask was more of a light suggestion vs a mandate, adding insult to the very real injury of knowing my mother would likely die as a result of someone’s carelessness. I found myself wanting to scream again, this time—“WEAR A MASK!” But I was numb, void of the energy to feel, a single tear making its way in slow descent from my tired eyes to the ground signaling that everything was not OK.

I spent the next 2 days living in the hotel room, unable to visit or even talk to my mother. Her texts would arrive once a day, “It’s getting bad. I don’t think I can do this anymore.” My updates to others stopped. I couldn’t bring myself to respond to ongoing inquiries.

The ICU staff made themselves available to me 24/7 to interpret test results, describe treatment plans, and help me manage expectations and prepare for every stage of treatment. The communication with them was decidedly different from those of my mother’s extended family and friends, and I found solace in my calls with these frontline workers. First, came empathy. At the beginning of each call, I was comforted:

“Hi Lisa, my name is nurse X, and I have the privilege of taking care of your mother today. I just want to tell you how sorry I am that you and your family are going through this.”

Their words struck a different chord, fine-tuned by the experiences of the last year and cognizant of the human in their care, beyond the articles, beyond the statistics. It seems that the physicians and nurses in the ICU remembered a key tenet of medicine—first treat the person, not the disease—this care and attention to the patient, my mother, was also extended to me as a family member.

Fortunately, I have the privilege of working with amazing pulmonary and critical care physicians. Members of the “home team” at my institution were among the kindest. They patiently answered my questions, did not offer unsolicited advice, and did not cite the latest articles or ask for test results, despite the fact that they were well qualified to speak to my mother’s condition. They listened to me weep and held space for me to be vulnerable. I was no longer viewed as their colleague; they understood that I was a scared daughter who desperately wanted to hold her mother.

Those closest to the pandemic, the physicians and nurses on the frontline of caring for seriously ill patients with this unrelenting disease, have been tasked with tapping into the deepest core of their humanity. On a daily basis, they pronounce death, hold the hands of loved ones whose families are precluded from being at the bedside, and witness disparities in outcomes linked to the color of their patients’ skin, disability status, and historical access to health care. Every day, as they enter the wards, instead of becoming immune to the death and despair, they dig deeper. In the middle of the worst crisis of our time, they are back at the bedside delivering medicine with humanity, humility, and grace.

The kindness these “ICU angels” show their patients and families is critical if we are to get through this cruel pandemic. While medicine is important—humanity must come first. Each conversation must begin with empathy and understanding. Over the span of 7 days, I shared some of the most intimate conversations of my life with strangers—the ICU angels who brushed my mother’s hair, shared her tears, and calmed her fears.

In the early morning hours of November 16, COVID-19 day 10, they held her hand, lifted the phone to her ear, and stood in the background bearing witness to the intensely intimate and desperate last words between a mother and daughter. I remained in a hotel room, 50 yards away, never getting to see my mother.

I share more than my mother’s smile and zest for life. I share her genetics and her vulnerability to this virus. As a result, I live in constant fear of contracting COVID-19. I am thankful, however, that should I need medical care I will be surrounded by health care professionals who practice humanity and empathy first.

As the pandemic enters the new year, people are dying in larger numbers than ever before. They often die alone, frightened and away from loved ones. As we head towards the light promised by the availability of vaccines, we must remain vigilant. We must protect ourselves and our communities by taking the recommended precautions. For all the mothers, fathers, and loved ones—please continue to wear a mask, maintain social distance, and wash your hands. But above all, should you find yourself communicating with family about COVID-19, lead with humanity and empathy, not statistics.

Section Editor: Preeti Malani, MD, MSJ, Associate Editor.
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Article Information

Corresponding Author: Lisa M. Meeks, PhD, University of Michigan, Department of Family Medicine, 1018 Fuller St, Ann Arbor, MI 48104 1213 (meeksli@med.umich.edu).

Conflict of Interest Disclosures: None reported.

Additional Contributions: I thank my colleagues and friends who provided valuable support and medical knowledge during this time: Elizabeth Viglianti, MD, MPH, MSc; Steven Gay, MD, MS; and Caroline Richardson, MD, University of Michigan Medical School; Christopher Moreland, MD, MPH, Dell School of Medicine, University of Texas at Austin; Rahul Patwari, MD, Rush Medical College; and Gilles Pinault, MD, and Lina Mehta, MD, Case Western Reserve University School of Medicine. I thank especially the physicians and ICU nurses at Viera Hospital in Viera, Florida, and the many frontline workers who care for and hold many hands of patients across the world.

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    2 Comments for this article
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    First Treat the Person
    Ilyssa Golding, MD MPH |
    Thank you for sharing this deeply moving story. I am so sorry for your loss and so grateful for the health care professionals who demonstrated such extraordinary sensitivity and compassion toward both you and your mother. I hope and pray that your experience is not an isolated one, and that we all remember to "first treat the person" and her loved ones.
    CONFLICT OF INTEREST: None Reported
    Compassionate Care in a Pandemic
    Halima SalisuKabara, CCRN, MPA, FWACN, PhD | Aminu Kano Teaching Hospital, Kano. Nigeria
    I feel for your loss because I can relate with it - I lost my favorite sibling too to COVID-19 in May 2020. I appreciate your kind words for the front line staff, colleagues who are always there through thick and thin, with or without adequate resources, giving their best to the critically ill.

    All it takes is being humane in caring, being compassionately caring, and above all caring 'holistically.' This is our call as intensivists. Carrying along the patient's relatives is a responsibility that weighs heavily upon us, using all our empathetic feelings, thinking of the patient as
    a whole family entity. Bless you all the 'angels' out there! Keep safe!
    CONFLICT OF INTEREST: None Reported
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