Oxygen mask as part of artificial lungs ventilation machine in surgery room, closeup.

Pandemic Highlights Need for Quality and Equity in End-of-Life Care

By Elizabeth Clayborne

I was a little less than six months pregnant when the COVID-19 pandemic hit in 2020. As an Emergency Physician, I am well aware of additional risks that my job often exposes me to on a daily basis. We frequently face physical and emotional strife from unstable psychiatric patients, critically ill nursing home residents, sexual assault victims, and newly diagnosed cancer patients.

People who work in an emergency department tend to understand what comes with the territory: a lot of hard work, unexpected outcomes, and daily traverses of the human experience, from the best emotions you can imagine, to lowest depths of human despair. This is what accompanies caring for every ailment for people from all walks of life. I actually love this part about my job! I never know what I’m going to see when I walk through the doors.

That said, being a frontline physician during COVID-19 has provided me with a profoundly different lens on the pressures surrounding health care workers. And experiencing this while pregnant was pretty terrifying.

When the pandemic first began, I knew that the patient population that I care for would be hit hard, but I don’t think any of us really imagined what was coming.

At the time, two of my female physician colleagues were pregnant, and we all decided to keep working as long as we thought we could reasonably protect ourselves with appropriate PPE. Being pregnant is not really conducive to anything we do in emergency medicine anyway. We don’t sleep at appropriate times, are often on our feet running around, and rarely have opportunities to eat, drink, or use the bathroom. Still, my fellow super moms and I stepped up to the task, since it was apparent we were going to need all hands on deck.

As the first wave began to swell, I often walked into work to find a line of ambulances waiting to get patients into negative pressure rooms and would frequently be asked to run out to the ambo bay in order to intubate or stabilize patients for whom we couldn’t find a bed. It was horrifying to see so many people becoming critically ill in such a short period of time and many dying despite our best efforts and understanding of how to treat coronavirus at the time. I immediately noticed the morale of the staff begin to sink, especially following the death of a staff member, which clearly illustrated just how risky our work had become.

I work with a largely African American patient population who was already struggling before the pandemic with long-standing health disparities. As a physician with a background in bioethics and an academic focus on health policy, end of life care, and inequities in health, I was not surprised to see how COVID-19 adversely affected our communities of color. Many minorities are already living on the brink, and any slight push, be it financial, physical, or emotional can land families in a destitute position which ultimately leads to significantly higher morbidity and mortality.

However, I was surprised how normalized death from COVID-19 has become both in my hospital and across the nation. What has never normalized for me is the frequency in which patients die in manners that are the opposite of what many of us ask for at the end of life; they die scared, alone, and in pain.

During the height of the first wave, I was featured in a news interview about my experience as a pregnant physician and was asked what my recommendations were as someone who had a front row seat to how COVID-19 was unfolding in our country. I spoke about something that I thought had not gotten enough attention in the news, advance care planning. The importance of advance care planning is immeasurable should a health crisis arise, and especially when we must face the formidable challenge of creating protocols for scarce resource utilization.

This interview opened up a new national platform that I have utilized to highlight why everyone must plan ahead, especially those who are from disadvantaged and at-risk communities. I’ve had to make countless phone calls to frantic family members who too often cannot answer the question, “What would your loved one want done in this emergency?”  These topics are sensitive, personal, religious, and impacted by an individual’s values, culture, and beliefs. Discussing them for the first time with me during an active emergency is not ideal. For myself and my patients, I recommended going to CDC.gov to find state specific forms, or an online platform such as MyDirectives.com to create an advance care plan that can be easily and securely updated to keep everyone on the same page.

COVID-19 forced me to sit down with my husband to have a difficult conversation about what I would want for myself should I become sick, and ways to best protect our baby. I was determined to lead by example and made sure my advance directive was updated and electronically accessible.

Fortunately, I gave birth to a healthy baby girl in May of 2020. Since then, I have reflected on what lies ahead for us post-pandemic. I know that we must grow and learn from the immense grief and loss that has occurred across the globe. Health care workers are fatigued, and new diseases and pandemics will continue to plague us in the future. I hope that we rise from the ashes of COVID-19 with the motivation necessary to improve care for our critically ill and near-death patients. Our health care workforce, as well as patients and their families, deserve better medicine in the sensitive and tenuous time at the end of life. And this is especially necessary for our communities of color, who have suffered a disproportionate loss of life due to this virus.

For me, the experience of COVID-19 as a woman of color, an emergency physician, and a mother has emphasized the need for our society to discard our antiquated discomfort with discussing death and dying. It will happen to all of us, you can choose to have a voice in your care and help those of us who are doing our best to respect the individuals we are caring for. We deserve better, you deserve better, and our society must do better.

Elizabeth P. Clayborne, MD, MA Bioethics is an Adjunct Assistant Professor in Emergency Medicine at the University of Maryland School of Medicine. Watch Dr. Clayborne’s TEDx Talk, “How to protect your body and your doctor’s soul during Covid-19,” and learn about steps you can take to begin the process of advance care planning. Follow her on Twitter and Instagram @DrElizPC.

This post is part of our digital symposium, In Their Own Words: COVID-19 and the Future of the Health Care Workforce

The Petrie-Flom Center Staff

The Petrie-Flom Center staff often posts updates, announcements, and guests posts on behalf of others.

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