Marshall Allen

Dying on the waitlist: Doctors forced to decide who gets lifesaving COVID-19 care — and who doesn’t

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Series: Coronavirus

The U.S. Response to COVID-19

In early December, Miguel Fernandez lay unconscious in the intensive care unit at a Los Angeles area hospital. A mechanical ventilator pumped oxygen into his lungs, which had been ravaged by COVID-19. The 53-year-old was dying.

The best, and likely only, chance of Miguel surviving was a therapy calledextracorporeal membrane oxygenation, better known as ECMO. It would allow his lungs to rest while a machine infused his blood with the oxygen he needed. But PIH Health Whittier Hospital, where he had been admitted, didn't have any ECMO machines or the highly trained staff needed to run them. Only a handful of hospitals in southern California did, and they were overrun with COVID-19 cases.

Since the beginning of the pandemic, public health experts had been warning about the need to “bend the curve" — to prevent the number of COVID-19 cases from spiking so hospitals wouldn't get overwhelmed.

But starting in early November, the daily number of COVID-19 hospitalizations surged in Los Angeles County, rising eightfold between then and the wave's crest, which arrived just after New Year's Day. Within weeks, overflowing hospitals faced exactly the types of care-rationing decisions experts had feared. Hospitals set up tents to increase capacity, and ambulances circled for hours as they waited for beds to open. By early January, Los Angeles County emergency medical personnel were directed to conserve supplemental oxygen by only administering it to the neediest patients, and to stop transporting to hospitals cardiac arrest patients who couldn't be revived in the field. State officials dispatched refrigerated trucks and thousands of body bags to the region.

Inside the hospitals, for patients like Miguel, a dire situation unfolded out of public view. Critically ill patients who might survive with ECMO could not get the treatment. Doctors had to choose who received the therapy based on who they thought had the best chance to survive. Some were approved, but had to be put on a waitlist. Many patients died waiting.

“I don't think we ever thought we'd get to this point, not in California," said Dr. Jack Sun, who oversees the program that includes ECMO at UCI Health in Orange County, 30 miles southeast of Los Angeles. “You know if you don't have a bed for somebody, they are going to die."

In some parts of the country, doctors can tap into centralized systems to quickly find any available bed for ECMO at any hospital in the region. That's not the case in Los Angeles. Miguel's caregivers and family would have to hack through red tape and navigate an opaque, disconnected and sometimes unfair system to try to save his life.

Miguel, the oldest of seven siblings in a family of Mexican immigrants, was always the one who fixed things. If someone needed a job, he would help them find work. If a car broke down, he would repair it. His sister, Margarita Rodriguez, described him as a “big cuddly bear" who gave her hugs and always made her smile. Just before he was hospitalized, he had stopped by to patch a leak in her roof.

Now the family had to find a way to fix Miguel.

They scoured the internet with searches like “What do you do when a ventilator fails?" One night, Margarita found a success story from San Diego about the use of ECMO. An ECMO machine takes over the work of a patient's lungs. It extracts blood from the body and circulates it through an artificial lung that removes carbon dioxide and adds oxygen before returning the blood to the body. One study of patients at 68 U.S. hospitals found that critically ill COVID-19 patients like Miguel “had a considerably lower risk of death" if they received ECMO during their first seven days in an ICU.

Miguel was relatively healthy other than having COVID-19. He didn't smoke or have any preexisting illnesses like diabetes. He was overweight, but below weight cutoffs used by ECMO centers to determine eligibility. Across the country, patients like Miguel who had been near death on a ventilator one day were alive and leaving a hospital weeks later after undergoing ECMO.

Miguel's oldest son, Miguel Jr., knew from his conversations with doctors that his dad wasn't going to get better by staying on the ventilator. “ECMO was his last hope, his best chance to survive," Miguel Jr. said. “It was ECMO or death."

A Desperate Search

Miguel and his family had tried to protect themselves from the virus. Three of his four adult children live in his home, and when they got infected in the fall, the family isolated as much as possible. Miguel stayed distanced on some nights by sleeping in an old RV he had in the backyard.

The pandemic had forced the extended Fernandez clan to cut back on family gatherings. Before COVID-19, Miguel had often organized get-togethers at his home on the southeastern side of Los Angeles, for birthdays or graduations, or to watch football or grill. After his only daughter, Jeannette, was accepted by UCLA last year, he proudly walked around her send-off bash in a “UCLA Dad" T-shirt.

But Miguel had to keep working. He and two of his brothers owned a construction business that bought and renovated homes. They had flipped hundreds of properties, starting 12 years ago with an $80,000 fixer-upper in Compton and more recently a $2.5 million project in Pasadena. Two of Miguel's three sons worked with him. Even after COVID-19 struck his family, Miguel still had to pick up supplies and go to job sites.

In early November, Miguel started to feel sick and went to a coronavirus testing site at a local recreation center. Two days later he received an email telling him what he already suspected: He had COVID-19. By Nov. 15, he had a fever and night sweats and was having trouble breathing.

Even though he was getting sicker, Miguel didn't want to go to the hospital. He knew people like him were dying. Latino Angelenos have suffered the highest COVID-19 death rate in Los Angeles County — almost twice the rate of Blacks and about three times the rate for whites.

But by Nov. 17, Miguel struggled to breathe as he walked from the bathroom to the couch. The family had purchased an oximeter, a device that measures oxygen levels in the blood when clipped onto a finger. His oxygen level had dropped to 77%, dangerously below the 95% considered at the low range of what's normal.

“We realized this was a real emergency," said Jeannette, his 21-year-old daughter. Just before midnight, two of Miguel's sons helped him into the passenger seat of the family's Ford Explorer. Jeannette took the wheel and Miguel's wife, Alejandrina, got in the back seat.

Jeannette headed to PIH Health Whittier Hospital, a 523-bed facility near their home. Outside the emergency room, the staff helped the 275-pound Miguel into a wheelchair and put an oxygen monitor on his finger. It sounded an alarm. His wife and daughter could see fear in his eyes; he didn't say a word as he was rushed into the hospital. Jeannette and Alejandrina didn't even get to say goodbye.

PIH Health declined to make caregivers available for interviews or answer questions about Miguel's care. “PIH Health will not be able to provide a statement for this story," a hospital spokesperson said in an email.

Hospital records show that Miguel was given high-flow oxygen through a face mask and put in a bed that allowed hospital staff to flip him on his belly, boosting his oxygen level to 93%. He was treated with steroids and an antiviral drug. Two days after admission, things were looking up.

Jeannette began providing updates through a group text message labeled “Familia." It included Miguel's brothers, many cousins, nieces and nephews, parents and his four children. Miguel was “doing good," she reported. Miguel spent his days reading messages on his phone, even when lying on his stomach. He sent his family photos of his food, and made special requests of the hospital staff, asking for buttered sourdough toast and prune juice with breakfast.

The family hoped Miguel would be home for Thanksgiving. But the course of COVID-19 is unpredictable.

At 11 p.m. on Nov. 22, Miguel texted his family, letting them know he expected to have a long night. He wrote in a text: “if I want to make it to thanksgiving have stay awake and restore my oxygen levels."

When Thanksgiving arrived four days later, a scan of Miguel's lungs revealed inflammation and scar tissue. Doctors started him on a 10-day course of anti-inflammation medication. “Be out by Christmas," Miguel texted.

The family responded with encouragement. “Hang in there we are all with you," wrote his sister Margarita. “Ten days go by really fast."

But eight days later, on Dec. 4, Miguel's oxygen levels plummeted. The doctors put him on a ventilator.

Miguel was now fighting for his life.

Unable to visit him, the family prayed for his recovery. Every night Miguel was in the hospital, his extended family gathered on Zoom at 7:30 p.m. Miguel's 71-year-old mother, Martha, and 73-year-old father, Salvador, would lead an hour-long prayer session while clutching rosary beads.

The separation was especially difficult for Alejandrina, who had been married to Miguel since 1991. Miguel liked to tease her when she watched her Mexican telenovelas: Why do you watch those shows when you have me? On Mother's Day earlier in the year, Miguel had surprised her by buying a pair of rings, getting down on one knee and proposing again. The couple made plans to renew their vows on their 30th wedding anniversary this summer. When he became sick with COVID-19, Miguel assured Alejandrina he would get better so they could get married again. She promised she would wait for him.

After Miguel was intubated, his family gathered in the parking lot outside the building where ICU patients are treated, to be as close to him as possible. Miguel's mother knelt on the pavement for 40 minutes, her hands clasped in prayer. She told her grandchildren that praying needed to be sacrificial. It had to hurt to be effective.

It was hard for Miguel's family to reach the doctors to discuss treatment options, in part because family members couldn't visit. It was impossible to build a relationship at the bedside or buttonhole doctors on their rounds, the way they could have in non-pandemic times. They called multiple times a day, but it was difficult to get clear information.

When a doctor did call with an update, Miguel's daughter Jeannette would patch in her brother, Miguel Jr., and Miguel's niece, Jhaimy Fernandez, a fourth-year medical student at the University of Vermont's Larner College of Medicine.

Miguel's family members said they were the ones to bring up ECMO, shortly after he was intubated. The ICU doctor treating Miguel told them ECMO was not an option, they recalled. Jhaimy requested a consultation with the palliative care team, which specializes in helping critically ill patients and their families make treatment decisions. The palliative care team, however, agreed with the ICU doctor, she said.

“They just thought it was outrageous for us to even think about ECMO," Jhaimy said of the hospital's doctors.

Miguel Jr. said it seemed as if the doctors were not familiar with his father's medical history. They asked if he had diabetes, Miguel Jr. said, which he didn't. He didn't have any preexisting conditions that typically make patients unsuitable for ECMO. Although some ECMO centers use age cutoffs, Miguel, at 53, was young enough to be considered appropriate for the therapy.

Carlos Fernandez, Miguel's younger brother and business partner, said it was frustrating that the family had to bring the ECMO option to the caregiving team.

“They just kind of wrote him off," he said, adding that it's possible the treatment team was just overwhelmed. “He's an older, Latino, overweight man. That is the demographic the coronavirus is looking for."

In a discussion with Miguel's daughter in the early afternoon of Dec. 7, a doctor called his prognosis “very poor," according to notes in his hospital record.

That update, however, was followed by more hopeful news. The family's insistence had paid off. His doctors had now decided he was, in fact, a candidate for ECMO. The family doesn't know what changed their minds, and the medical records do not describe how the doctors arrived at that decision. The medical team told the family Miguel would be transferred soon to a site where he could receive the new treatment.

A Tangled System

That afternoon, a hospital patient case manager began the effort to find Miguel an ECMO bed.

There is no central database that hospital staff can tap into to quickly figure out where in the greater Los Angeles area an empty ECMO bed might exist. Case managers typically have to call hospitals one by one, navigating each facility's particular bureaucracy and coordinating it all with Miguel's insurer.

“It is a nonsensical, haphazard collection of stakeholders, and the pandemic has found the fault lines in it," said Dr. Douglas White, a physician who directs the program on ethics and decision making in critical illness at the University of Pittsburgh School of Medicine.

A key reason ECMO is being rationed in the U.S. is a lack of regional coordination, White said. “If one hospital has no ECMO [units], but another 50 miles away has one, there needs to be a system in place to connect them," he said. “That's how you prevent the need to ration."

In Arizona, the state health department created the Arizona Surge Line early in the pandemic to coordinate care statewide for critically ill patients, said White. More than 4,000 patients, including many from hard-hit Native American reservations, have been transferred through this clearinghouse, according to White. The system is focused on capacity for all critically ill patients, so it's broader than just ECMO treatment. But it's an example of how to connect patients to the resources they need in real time, he said.

In Washington and Oregon, ECMO program directors can log in to a document that displays the availability of ECMO beds throughout the region.

In 2016, the directors of Minnesota's six ECMO centers created a consortium to help with pandemic and emergency operations, said Dr. Matthew Prekker, a pulmonologist and critical care specialist at Hennepin County Medical Center in Minneapolis. The consortium established uniform eligibility guidelines to make sure all critically sick patients get a fair chance at the therapy.

If half the state's medical centers reach capacity, it triggers an emergency conference call between the ECMO center directors, who steer patients to open beds. “We are well organized," said Prekker. “We don't work in silos."

Los Angeles has vast academic medical centers, but no real-time coordination on finding ECMO beds. Before COVID-19 there had not been a need to coordinate such a high volume of patients, said Dr. Peyman Benharash, director of the adult ECMO program at UCLA Health. He said when COVID-19 hit, ECMO doctors created an informal group chat so they could coordinate patients and resources, but it's not something case managers can access. Benharash said his center does not use a waiting list, because he wants case managers to continue searching for any hospitals that might have a bed available. If UCLA is full, it tells case managers to call back in 12 hours.

The lack of a centralized system in Los Angeles can result in a scramble for case managers and doctors as patients' lives hang in the balance.

On the afternoon of Dec. 7, Miguel's medical records show, the PIH Whittier case manager called Miguel's insurance company. There was no guarantee the insurer would agree to a therapy that can easily run into the six figures. Insurance company rejections of ECMO are not uncommon, according to ECMO directors. But in Miguel's case that didn't seem to be an obstacle. The insurer told PIH that the University of Southern California's Keck Hospital, the Ronald Reagan UCLA Medical Center and Cedars-Sinai Medical Center might be options. The case manager left a message at USC and provided UCLA with Miguel's information. Cedars-Sinai came back with a no, saying Miguel didn't meet its criteria for ECMO therapy.

The case manager, after talking to Miguel's insurer, tried two more hospitals. One, UCI Health in Orange County, didn't have any ECMO beds available. A second, Providence Saint John's Health Center in Santa Monica, said it would review Miguel's records.

During the COVID-19 surge, ECMO centers were screening the growing number of patients to prioritize those with the best chances of survival. At 5:08 p.m., after three hours of working the phones, the case manager turned over the search to a colleague. Soon after, UCLA called to say it wouldn't take Miguel because he had a hematoma and blood clotting.

A Prayer Answered

As the case managers searched for an ECMO bed, Miguel's mother was back in the hospital parking lot holding a vigil for her son. This time, she hid a prayer card and string of rosary beads underneath the green leaves of a day lily to protect Miguel when she was not there.

The search for an ECMO bed did not make progress for most of the day on Dec. 8. The longer Miguel depended on a ventilator, the greater the chance he would either die or suffer complications that could disqualify him for ECMO. Even without complications, extended ventilator time could rule out ECMO. By now, he had been intubated for four days. Some programs will not take a patient who has been intubated more than a week.

“When it comes to somebody needing ECMO, they can fail very quickly," said Sun.

The next day, on Dec. 8, the palliative care team offered a grim prognosis in a telephone call with Miguel's family: “We told them that Mr. Fernandez was not likely to recover at this point," according to hospital records. The family said it still wanted the hospital to make every effort to save Miguel if his heart stopped.

Throughout the day on Dec. 8, a staffer at the Saint John's transfer center was trying to reach someone at PIH to discuss Miguel's case. At 8:33 that evening, a case worker at PIH wrote that she had received a call from Saint John's. The transfer contact said he had “been trying to get in contact with [case manager] all day and left VMs but no one called back."

The next day, a PIH case worker noted in the records that she had missed messages from Saint John's because it was her day off.

Saint John's had been calling PIH with good news: The hospital had accepted Miguel for its ECMO program and would admit him as soon as a bed became available. Over the next few hours, paperwork was faxed back and forth between the hospitals, and the insurance company was contacted for approval.

“Great news!!!" Jeannette announced in a message to the family group chat, adding a heart emoji. “My dad got accepted to St. John's hospital in Santa Monica!!"

The plan, she informed the group, was for Miguel to be moved later that day.

A Life-Saving Therapy

At Saint John's, Dr. Terese Hammond was receiving up to three requests a day to use ECMO to treat patients like Miguel. Hammond had been instrumental in starting the hospital's ECMO program after she was recruited in 2018 to oversee critical care. She had worked with the therapy at USC, where she headed up the pulmonary critical care fellowship.

Community hospitals like Saint John's don't typically have the budget or specialized staff for an ECMO program. Even in the United States — which spends about twice as much per person on health care as other developed nations — more than 90% of hospitals do not offer ECMO. In Los Angeles, the established programs are located at big academic medical centers like USC, UCLA and Cedars-Sinai.

At Saint John's, private donors came up with the money to buy a dozen ECMO units, which can cost up to $85,000 each, Hammond said. The hospital can care for as many as eight ECMO patients at once, depending on staffing.

Hammond was an early believer in using ECMO to help COVID-19 patients whose lungs were failing. Nearly every one of the COVID-19 patients treated with ECMO at Saint John's transferred in, some from more than an hour away.

“We have to validate there is benefit, and we have been able to do that," she said. “I have people alive today because of ECMO."

Miguel's family didn't have to look hard for those success stories. Los Angeles Police Department detective Michael Chang was an early ECMO patient at Saint John's whose near-death experience was featured in local news reports.

Chang had been assigned to robbery and gang investigations but was shifted early in the pandemic to working in uniform at COVID-19 testing sites, food giveaways and supermarkets. On March 30, he was admitted to a small Orange County hospital near his home with COVID-19. Six days later, he was intubated and placed on a ventilator.

As soon as Chang was intubated, his wife, Dana Chang, tapped into a network of police contacts in search of more advanced care. A captain put her in touch with an LAPD reservist who is also a surgeon, she said. That doctor told her about Saint John's and its ECMO program. He called Hammond, and a transfer was arranged.

“He was going downhill fast," Dana said of her husband. “If I left him there, he would have died."

Chang arrived by ambulance at Saint John's on April 7 and was immediately hooked up to an ECMO machine. On the evening of April 12, he was removed from the machine. He left the hospital five days later.

Michael Chang sometimes still experiences shortness of breath and bouts of a dry cough, but he credits ECMO with saving his life. “Prior to me getting it, I had never heard of ECMO," he said. “I had no idea what this thing is. The world needs to know about this."

Of the 39 COVID-19 patients placed on ECMO at Saint John's since the start of the pandemic, 15 are alive today. Hammond said most of them almost certainly would have died without ECMO.

Hammond is the first to caution that ECMO is not a miracle cure. About half the COVID-19 patients undergoing ECMO die in the hospital, according to a registry of more than 3,400 COVID-19 patients worldwide, though some centers have reported survival rates of as high as two-thirds.

Miguel's family said they knew ECMO wasn't a guarantee, just a chance, something the doctors at PIH were telling them he didn't have there. If it didn't work, they said, they would take comfort in knowing everything possible had been done to help him.

The Waiting List

The news of Miguel's pending transfer to Saint John's quickly gave way to a larger reality: There were lots of patients like Miguel in Los Angeles.

COVID-19 was surging. The number of COVID-19 patients in intensive care units had doubled in the three weeks since Miguel was hospitalized. At PIH Whittier, two weeks before he was admitted, 17 patients had COVID-19. The week Miguel arrived, that number swelled to 47. By the time he was intubated, there were 76. By Dec. 7, when the ECMO search began, there were 93.

At Saint John's, the ICU was full and unable to take in any new patients. While Hammond had approved the transfer of Miguel and had an ECMO machine to treat him, there were no beds available.

The waiting list was not something the family could see or monitor. There was no way to know who was ahead of Miguel, or why, or how fast people were moving up the list. At least at the deli counter or DMV, they could see numbers on a board, monitor their progress and make sure no one jumped the line. With Miguel's life in the balance, his family was completely in the dark.

“My dad didn't have anybody that would call to make him a priority," said Miguel Jr. “There was no way for us to hold anyone accountable for what they were saying. We just had to take them at their word."

Hammond said the waiting list is not influenced by a patient's wealth or social status, only whether they are medically qualified and “likely to survive this therapy." In the case of Miguel, she had approved him for ECMO when other hospitals said either they had no room or he didn't meet their criteria.

On Dec. 10, Miguel Jr. shared the bad news on the family chat that his father's transfer had not taken place the night before as hoped. “We have been calling my dads transfer case manager at the hospital and we even called saint johns and spoke to one of their case managers to try to speed up the transfer process but there is not much we can do but wait for a bed to open," he texted to the Familia group.

The next two days brought more waiting. “Call to Providence St Johns to follow up on ECMO spoke w/ Rachel, still no bed. no movement yet, same status," Miguel's caseworker at PIH wrote in her notes for Dec. 11.

By now Miguel had not been breathing on his own for a week and was becoming “more and more difficult to ventilate," according to hospital records.

The family didn't understand what it meant when hospitals said they had “no beds" in their intensive care units. Jeannette and Miguel Jr. called Saint John's to ask if they could buy a bed for their father. They did research to find out if donations were allowed to fund additional beds at the hospital, but were told it doesn't work that way.

Jeannette imagined ways to get inside the hospital and see with her own eyes that every one of its 266 beds was occupied. She looked into becoming a volunteer at Saint John's and found an application online.

Hammond said the phrase “not having a bed" was a euphemism for lacking enough nurses, respiratory therapists, perfusionists and doctors to care for patients who need intensive care. Saint John's expanded its ICU capacity from the normal 23 beds to 40, but adding beyond that meant stretching the staff too far.

On the morning of Dec. 12, nearly five days after the search for an ECMO bed began, the case manager told Miguel's family that he was in “the top 3" of those waiting for an ICU bed at Saint John's, according to the medical records.

Less than an hour later, a team of doctors and nurses hurried to Miguel's room at PIH. The hospital had called a Code Blue. Miguel's heart had stopped. The team started chest compressions and administered drugs to restart his heart. It worked, but Miguel had suffered damage to his kidneys and other organs.

The next day around noon, someone from the Saint John's transfer center called a nurse at PIH Whittier to say that once again no beds were available. The PIH case manager told Saint John's that Miguel was in multi-organ failure, and might not survive the ambulance ride to the other hospital. Two hours later, Saint John's informed PIH it would no longer take Miguel as a patient “due to change in condition."

At 5:23 p.m., another Code Blue alert was sounded. This time, Miguel did not survive. In his room, a hospital worker gathered items left behind after his 26-day stay: an Apple laptop, an iPhone and a pair of cracked black-rimmed glasses.

“People Are Dying Waiting"

The story of Miguel's death and his family's scramble to get him potentially life-saving care has become a familiar one for Hammond.

She said she has had as many as seven people on her waiting list at one time, all in similarly desperate situations.

“Part of the PTSD I have, the nightmares I have, are as much having to say no and having people die on a waiting list," she said. “Those are all things that represent a lot of moral injury for physicians. We know the limitations the surge placed on our ability to do the best we can. People are dying waiting."

The rationing is not limited to Los Angeles. It is playing out across the country.

In Dallas, the ECMO unit at Baylor University Medical Center receives daily requests from across Texas and neighboring states on behalf of desperately sick COVID-19 patients. Their last chance at survival could come down to whether Baylor has a bed. “A few days ago I had five patients on my waitlist," Dr. Gary Schwartz, a lung transplant surgeon who leads the ECMO program at Baylor, said in an interview. “Two passed away while waiting. It is absolutely terrible."

Schwartz said his center, one of the busiest in the country, averaged about 120 ECMO patients a year before COVID-19. In 2020, that number grew to 158, and the number would have been higher if he had had additional capacity. “Quite honestly, there was an additional 50 to 100 who were appropriate but there were no resources for them," he said.

National guidelines created by the Extracorporeal Life Support Organization, a consortium of hundreds of ECMO centers, essentially call for rationing as the demand for ECMO spikes in regions saturated with COVID-19 cases. As surge levels escalate, “we recommend that selection criteria become more stringent to use this resource for those most likely to benefit," according to the guidelines.

Some centers have moved to implement an age cutoff for ECMO, or lower the age in existing guidelines. At Baylor, the maximum age of those considered appropriate for ECMO was dropped to 60 from 75 before COVID-19, Schwartz said. He said another center in the region reduced its age range to 50 or younger because it was overwhelmed with requests. “Many of the patients in the beginning were elderly, and we were afraid that if we had lots of those people that the younger people, 30 to 40, wouldn't have that available," he said. Schwartz said he has colleagues in Europe who think an age restriction is unethical. “In a perfect world, we would be using [ECMO] for the people most likely to survive," he said.

Schwartz and the directors of other ECMO centers in Dallas created an ad hoc group chat on WhatsApp to try to keep track of where beds were available as hospitals filled to capacity. “The real question is do we learn from this and change in the future to some kind of centralized process?" Schwartz said.

Hammond said the ECMO directors in Los Angeles have a similar arrangement where they text each other to find empty beds. The surge in Los Angeles is waning, and cases throughout the country are also going down. But new variants of COVID-19 are emerging, posing a threat of fresh surges. Hammond hopes the experience with COVID-19 will prompt the creation of a formal, permanent network to coordinate the care and movement of critically ill patients in Southern California.

Miguel's niece, Jhaimy, will become a doctor in five months and has been interviewing to do her family medicine residency training in Los Angeles. She's always been aware of health care disparities, and went to medical school to find ways to improve the system.

“It just pains me to see how typical a case my uncle was," she said. “He was Hispanic, mid-50s, an essential worker, not trusting of the health care system. He fit all the checks."

On Dec. 30, Jhaimy was one of dozens of family members who gathered to bury Miguel in a sprawling cemetery near his home.

A family friend organized a fundraiser to help defray the cost of the funeral. Miguel was his family's primary source of income, and since his death, bills have mounted.

A blue and white floral arrangement spelling out “PAPA" was placed on a stand near his grave. Underneath it was a photograph of a younger Miguel, wearing a white button-down shirt and a leather jacket.

The specter of COVID-19 hung over the graveside service. Everyone wore a mask. Miguel's mother slumped over his casket, gripping it with hands covered in clear medical gloves. She wore a face shield and a cloth mask.

The burial did not bring Miguel's family members much closure. Jhaimy said she has wondered what would have happened if her uncle had not been so afraid to go to the hospital. Would he have survived if he had been treated sooner?

Miguel Jr. and Jeannette are troubled that Miguel's doctors didn't present ECMO as an option, and then resisted the idea when the family suggested it.

The family still thinks about what would have happened if an ECMO bed opened up in time.

“I believe with ECMO he would still be here today," Miguel Jr. said. “He never got the chance to fight."

Experts explain how your brain tricks you into taking risks during the pandemic

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It was mid-February and Maria Konnikova — a psychologist, writer and champion poker player — was on a multicity trip. From her hotel room in New Orleans, she called her sister, a doctor, to discuss the emerging COVID-19 pandemic. Konnikova saw there were early cases in Los Angeles, where she was headed for a poker tournament.

The odds of Konnikova getting infected or spreading the virus by participating in a large indoor event were unknown. But as a poker player she had a lot of experience thinking through the probable risks associated with different decisions. So she played it conservatively. She cut short her trip and went home to quarantine in New York.

Konnikova's psychology expertise tells her that most people have a hard time thinking through the uncertainty and probabilities posed by the pandemic. People tend to learn through experience, and we've never lived through anything like COVID-19. Every day, people face unpleasant and uncertain risks associated with their behavior, and that ambiguity goes against how we tend to think. “The brain likes certainty," she said. “The brain likes black and white. It wants clear answers and wants clear cause and effect. It doesn't like living in a world of ambiguities and gray zones."

Many months into the pandemic, even as the nation faces its highest average daily case counts to date, people still don't agree on how to live in the era of COVID-19. We know how to protect ourselves — washing our hands, wearing masks and staying socially distant — but many people still take unnecessary risks, even at the highest levels of government.

In late September, the White House hosted an indoor party celebrating the nomination of Judge Amy Coney Barrett to the Supreme Court. It became a possible superspreader event because attendees did not wear masks and ignored social distancing recommendations. Former New Jersey Gov. Chris Christie didn't wear a mask at the event. He also went without one when he helped President Donald Trump prepare for his first debate. Christie later spent a week in intensive care with COVID-19 and then wrote an opinion article in The Wall Street Journal titled “I Should Have Worn a Mask." “I let my guard down," he wrote.

The U.S. Centers for Disease Control and Prevention called on Americans to wear masks in July. So why is it so hard for people to mask up and practice other established behaviors to prevent the spread of COVID-19? The problem, experts who study the way we think say, is that the unprecedented nature of the pandemic makes us vulnerable to subtle biases that undermine how we process information and assess risk. Our brains can play tricks on us. That causes some people to underestimate their risk, the experts said.

When Las Vegas reopened, crowds showed up without masks. An estimated 365,000 people attended the annual Sturgis Motorcycle Rally in South Dakota. Many didn't wear helmets or masks. The festivities included a non-socially distanced concert by Smashmouth. And even though masks were distributed and required at a recent Trump campaign rally in Erie, Pennsylvania, some attendees did not wear them, and the campaign packed people into crowded buses.

It may not always seem like it, but people are rational and weigh the costs and benefits when they make decisions, said Eve Wittenberg, a decision scientist at the Center for Health Decision Science at the Harvard T.H. Chan School of Public Health. “People are not stupid here," she said. But they have no experience thinking through a pandemic and are also getting mixed and conflicted messages from leaders, she said. That creates uncertainty and can lead people to rely on patterns of risk perception that may not be accurate.

The Power of Social Norms and Personal Experience

People may be more likely to participate in riskier activities because they tend to behave according to the norms that surround them, said Lisa Robinson, a senior research scientist at the Center for Health Decision Science. If we're surrounded by people who behave a certain way, she said, we are more likely to behave the same way.

At this point the facts about COVID-19 are well established. It's extremely contagious and transmitted via droplets that come from an infected person's mouth or nose. This can happen during speech, coughing, sneezing or breathing — whether a person is experiencing symptoms or not. Older and sicker people are at higher risk of serious illness or death. But young, healthy people can still become infected and sick, and they can also put others at risk by spreading the virus.

A well-known historical example of people being directed by social norms is smoking, Robinson said. For decades the societal norm said smoking was cool, even after it was known to kill people. That contributed to a lot of people smoking, willing to take the risk. Then the norm flipped and smoking became uncool, and fewer people smoked. “We take a lot of cues from our environment," Robinson said. “If I see a lot of people wearing a mask, I wear a mask."

Betsy Paluck, a professor of psychology and public policy at Princeton University and MacArthur “Genius" Fellow, studies how these social norms are formed and how they shift over time.

“There's a lot of competing information out there," Paluck said. “Your individual decisions are very real to you, of course, but they need to be validated by other people in your neighborhood, your organization."

Paluck said everyone is influenced by social norms, including her. She has a newborn and elderly parents, so she's been cautious during the pandemic. But it's getting harder to be careful as people broaden their social lives.

She talked recently to a friend who is holding her kids out of school, opting for all virtual instruction. The friend's decision felt like a huge relief because it affirmed Paluck's own feelings. It showed her how much we all rely on our shared reality. “Holding the line on your own is just not tenable," she said.

Personal experience also has an outsized role in decision-making. People who were in the hot zones of New York City and New Jersey during the initial spread of COVID-19 witnessed the effects of the virus. They may have become infected themselves or known others who became sick or even died. They might have known health care workers who cared for the sick, potentially exposing themselves in the process. Meanwhile, people in parts of the country that have not been hit hard by the virus might not have had that experience and therefore fail to appreciate the risk.

Poker players, along with folks like meteorologists, horse race handicappers and lawyers who work on a contingency basis are routinely rewarded or punished based on the odds. This gives them a rare visceral, experiential understanding of percentages and lets them short-circuit a cognitive effect called the “description-experience gap," which leads people to underestimate risk based on their own personal experiences.

Even Nobel Prize-winning economists are susceptible to it. The pandemic is beyond the limits of human intuition, said the psychologist and economist Daniel Kahneman on Konnikova's podcast.

Wittenberg pointed to the work of Kahneman and Amos Tversky, who coined the term “availability" to describe how we base our thinking on what we've seen or experienced. We see it show up when a person assesses his or her risk of a heart attack by recalling instances among acquaintances, the two researchers wrote in their 1974 paper, “Judgment Under Uncertainty."

The researchers also noted how some instances might come to mind more easily than others and thus get more heavily weighted in decision-making. Other instances might be more salient or may have happened more frequently, so they come to mind faster. Relying on “availability" to make decisions introduces biases, according to Kahneman and Tversky. “It is a common experience that the subjective probability of traffic accidents rises temporarily when one sees a car overturned by the side of the road," the researchers wrote.

The Need for Leaders and Institutions to Guide Us

The confusion surrounding COVID-19 was magnified by a lack of testing in the early days of the pandemic and then delays in test results, Wittenberg said. That meant people didn't have clear data to anchor their risk assessment.

The confusion called for leaders to guide the public with clear public health messages, but instead they have exacerbated the problems. It was well known relatively early in the pandemic that wearing a mask could help prevent the spread of the virus, but it took until July before Trump wore one in public for the first time. Some governors have downplayed the risk posed by the virus, others have emphasized it. That's left the public “grappling with mixed and conflicted messages," Wittenberg said.

Baruch Fischhoff, a psychologist who studies risk and decision-making at Carnegie Mellon University, said people are good at perceiving risk if they are getting information from a trustworthy source. But the risks associated with the coronavirus, which is invisible, are not intuitive, he said. It's hard for people to project the exponential spread of the virus, he said. Our minds don't easily extrapolate it, so we need leaders to help protect us from ourselves, he said.

The situation could be compared to how the government protects people at train crossings, Fischhoff said. Drivers are good at estimating the speed of other cars. But research from accidents at train crossings has shown that drivers are not good at estimating the speed of oncoming trains, which are much bigger. “Our brains are calibrated to treat a train like a car," he said, “but it's going faster than it looks."

To stay safe from an oncoming train, drivers either need to go against their intuition, have someone warn them in a way they will remember or have something block the crossing when a train approaches. “Somebody needs to protect you," he said.

Good public health communication requires testing messages to make sure they are interpreted correctly by a wide range of people, Fischhoff said. “Our official communicators have dropped the ball, and they have been undermined by people who don't have the public's interest at heart," he said.

Paluck, the social psychologist, said certain leaders and influencers stick out like bright colors. They're charismatic and we look to them when we check our own behavior. “What they say and do becomes the anchor we use," she said.

People also put faith in trustworthy institutions, she said, even when they may not agree with what the institution is saying. She and a colleague found something suprising when they studied the effect of the Supreme Court legalizing same-sex marriage. A greater number of people supported same-sex marriage because of the Supreme Court's decision, even if they had not changed their personal views. “They thought that there was a bigger consensus in the United States that same-sex marriage was a good thing," Paluck said. “So that's the power of an institution."

Optimism Bias and Why Institutions Failed to Act

Optimism bias is a pattern of thinking that causes our brains to see future outcomes as rosier than they really are. It transcends gender, culture and age. It turns out to be incredibly helpful in most situations. There's only one subset of the population that doesn't experience optimism bias, Konnikova said — people suffering from depression.

“This is actually something that's very psychologically protective," she said. “It ends up that seeing the world as it is makes you clinically depressed."

When it comes to institutional behavior, however, optimism bias can lead to poor planning and risky decision-making.

Dr. Eric Toner is a senior scholar at the Johns Hopkins Center for Health Security and says that the pandemic has taught him about the power of denial. The global public health community learned in mid-January about the extent of community transmission of the novel coronavirus in Wuhan, China, Toner said. The most obvious sign of concern, he said, came when China took the dramatic step of locking down Wuhan, one of its largest cities. Something really bad is happening, he thought to himself.

And yet, public health officials in the United States were slow to sound an alarm. “People have trouble recognizing when they're facing a catastrophic threat and on the other hand they exaggerate minor threats," Toner said. “We needed messaging from the top of the government that says this is a serious threat."

“Until you hear the message from somebody who is in a position of authority, I think there is a tendency to really want to not believe it. People don't want to believe really bad news."

Toner said the Center for Health Security heard over and over again that hospital CEOs would not be convinced of the dire threat posed by the pandemic until the federal government decided to say something. But by then much time had been lost.

When public health officials did sound an early alarm, their voices were squelched. Dr. Nancy Messonnier, one of the senior leaders at the CDC, warned on Feb. 25 that there would be community spread of the virus, and that protective measures might include school closures and working from home. As ProPublica previously reported, her comments caused the stock market to drop, which infuriated Trump. Vice President Mike Pence was installed as communicator-in-chief, and the CDC officials were sidelined. “When it mattered most, they shut us up," a senior CDC official told ProPublica.

Toner's group is in charge of designing pandemic preparedness exercises. Some of them are eerily similar to our current situation. He said he's often asked how it's possible that we did all these exercises and still had such a bad response to the COVID-19 pandemic. His answer: The exercises advanced the field, but they had their limits. “They didn't inoculate us against really bad decision-making," he said.

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