My Patient Didn’t Die From Covid. He Died Because of It.
Lucas Callender told me that after cheating death, he had become kinder. When he was a teenager, an aggressive tumor had gnawed through part of his thigh muscle. After surgery and chemotherapy, his cancer was undetectable. He became the type of guy who would dress up as a princess for his niece’s birthday, or go to five different stores to find his dog’s favorite chew toy.
In January 2020, he celebrated ten years cancer-free. But a few months into the pandemic, his back began to ache. He figured he’d slept funny or overdone it when moving furniture for his mother. But his back soon throbbed with such intensity that he started biting his pillow whenever he sat up in bed. Normally, he’d have made an appointment with his doctor or gone to the emergency room. Instead, he watched doctors on the news warn people to stay away from hospitals unless they couldn’t breathe. Afraid of catching the coronavirus and joining the escalating number of the dead, he stayed home.
But in June 2020, when he began to feel as though putting any weight on his right leg would shatter it, his mother drove him to the emergency room. His cancer had returned and spread throughout his pelvis and spine. This time, it was incurable.
As a palliative care physician, I was called to help manage Lucas’s pain. We met in the I.C.U., where he needed such high doses of pain medication that I had to monitor his heart rate and breathing closely. He died a year and a half later, after a series of harsh, unsuccessful chemotherapies and risky surgeries. His mother, inconsolable, told me she wished her son’s cancer had returned in 2019, when he would never have hesitated to call his doctor, instead of 2020, the first year of the Covid pandemic.
One million Americans have died of Covid-19. And while many researchers believethat this is an underestimate, intense effort has been made to catalog each death as meticulously as possible.
But my patient didn’t die of Covid-19. Instead, he almost certainly died because ofCovid-19.
It is unclear exactly how many people like Lucas died as a consequence of the pandemic’s disruption of health care. Their stories drew too little public attention, and their deaths, in the shadows, will probably remain uncounted forever. The pandemic limited access to mental health services and routine care, leaving their depression and hypertension untreated. We may never know how many people with chest pain died away from the hospital because the news that night was filled with images of Covid patients gasping for air in crowded E.R. hallways. But health care systems and government officials still must make every effort to understand the reasons these people died shadow deaths if there is to be any hope of preparing a humane and equitable response for the next public health emergency.
Between March 2020 and January 2021, over 500,000 more people in Americadied than had in the same period a year earlier, an estimated 28 percent of them from causes other than Covid, such as heart attacks, strokes and Alzheimer’s. Visits to clinics providing primary and specialty care plummeted, often in concert with stay-at-home orders. Patients of color suffered a disproportionately high number of excess deaths because of longstanding barriers to care made worse by the pandemic.
In the eyes of many, the pandemic transformed places of care into places of contagion. More than 40 percent of adults surveyed by the Centers for Disease Control and Prevention decided in the early months of the pandemic, as my patient had, to forgo medical care because they feared exposure to the virus; 12 percent even avoided emergency care.
Some patients suffered evolving symptoms until a crisis arose. Many felt forced to self-triage. My patients’ decision making suddenly required intense cognitive gymnastics: I have to get a CT scan before chemo, but what if I come home with Covid and infect my family? If I go the E.R. with stomach pain, and they’re busy, do I wait it out or come home to avoid getting infected?
While fumbling through the dark landscape of tragedy, my colleagues and I have often mourned the stories of patients who sought out medical care despite their fears about contracting Covid, only to become casualties of an overburdened system. Early in the pandemic, a colleague told me about an elderly patient with heart disease who died in the emergency room while waiting nearly a day to be admitted to a hospital filled with Covid patients. During the 2020 winter surge in Los Angeles, another patient developed a terrible headache at home, and by the time paramedics arrived an hour later, blood had flooded her brain. She never regained consciousness.
Around the same time, a woman with cirrhosis began to drink more heavily and couldn’t get a timely appointment with her usual physician, who’d been deployed to treat Covid patients in the hospital. Shortly after she went to an urgent care center, she died from liver failure.
The families of these people suffered the singular ache of wondering whether they had pushed their loved ones hard enough to go to the hospital or advocated sufficiently for them to get the care they needed. Their doctors often wondered the same.
I’ve thought about whether listening to patient stories earlier in the pandemic might have improved health care systems’ responses to their needs during these tumultuous years. In April 2020, leaders at Adventist Health Lodi Memorial, a community hospital in central California, noticed that visits to the emergency room dropped by around 50 percent shortly after California issued its first stay-at-home order. Paramedics reported a record number of cardiac arrests outside the hospital, and patients with strokes almost uniformly waited to seek help until the severity of their symptoms worsened.
A team of researchers mainly from the University of California, San Francisco, interviewed patients and physicians in Lodi about their health care experiences during the early months of the pandemic and reported, “the overarching theme from these interviews was fear.” To feel safe, patients said they needed to understand the hospital’s efforts to minimize transmission of the virus as well as clear guidance about when to go to the emergency room and reassurance that they would receive care.
The hospital responded swiftly. Patients with respiratory symptoms that could signal Covid were evaluated in one part of the emergency room, a safe distance away from others. Patients received emails about the measures taken to keep the hospital clean, the prevalence of Covid cases in the community and what symptoms should prompt an immediate visit to the emergency room. People soon began to return to the emergency room, and lives were potentially saved.
The health care system should emulate Lodi Memorial’s approach and pursue the stories of those who died shadow deaths in order to prevent such deaths from happening amid the next crisis or surge. Researchers and policymakers must investigate and learn from the experiences of people like my patient and the patients in Lodi to understand how to minimize obstacles to getting care even amid the tumult of a pandemic — particularly emergency care for people suffering heart attacks and strokes.
There is, of course, no way to plan for every permutation of disaster. But acknowledging fallibility cannot subvert the urgency of translating these stories into change, which can begin at the local level. Individual hospitals should calculate their system’s excess deaths, compare their data with that of other hospitals and survey patients and families to understand what factors influenced their medical decision making. Local research should inform state and national public health messaging, balancing a need for caution with guidance about when to seek emergency care, and where. And, as always, access to primary and preventative care must increase in order to minimize deaths from chronic illnesses.
Our health care system must act now, before the next crisis strikes. There may be no list of people who died in the shadows of the pandemic, but decreasing their future numbers is a powerful way to memorialize them.
As Lucas grew sicker, I found myself rewriting his story, swapping the reality unfolding before me for an ending I thought he deserved. I imagined it was 2019 and he was dancing with friends at a holiday party when he felt a bolt of pain in his back. He toughed it out for a few days, then went to his doctor. On his CT, tumor glowed in just one place; after surgery, it vanished, and he was healed once again. A few months later, he’d ask out the woman he met at the party. He’d roughhouse with his dogs, carry his niece on his shoulders so she could see the world from his point of view.
In my version of his life, he would never be my patient."