David Armstrong

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."

Lax states are attracting shoppers and students from stricter neighbors — and sending back COVID cases

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For months after Washington state imposed one of the earliest and strictest COVID-19 lockdowns in March, Jim Gilliard didn't stray far from his modular home near Waitts Lake, 45 miles north of Spokane.

The retiree was at high risk from the coronavirus, both because of his age, 70, and his medical condition. Several years ago, he had a defibrillator implanted. So he mainly ventured out during the pandemic to shop for food.

There wasn't much else to do anyway. Gatherings in his county were limited to no more than 10 people, there was a mask mandate, movie theaters were closed and many nightclubs and concert venues were shuttered because of a state ban on all live entertainment, indoors and out.

An hour away in Idaho, life was more normal. The state left key COVID-19 regulations up to localities, many of which made masks optional. Even in places that required face coverings, enforcement was laxer than in Washington. High school sports, canceled for the fall in Washington, were on full display in Idaho. Most Idaho schools welcomed back students in person, in contrast to the remote learning prevailing in Washington. Businesses reopened earlier and with fewer restrictions. There were concerts and dances.

Weary of Washington's restrictions, thousands of residents made the easy drive over the border to vacation, shop and dine in Idaho. Gilliard resisted temptation until he learned that the annual Panhandle Bluesfest would go on as scheduled near Priest River, Idaho, on Sept. 12. A keyboardist who used to own a blues club just outside Coeur d'Alene, Idaho, Gilliard was buoyed after months of relative isolation by the prospect of hanging out with friends while listening to music on a remote mountainside surrounded by soaring pine trees and thick hemlocks. He decided to go.

A friend took a picture of Gilliard at the festival. Wearing a bandanna fashioned as a headband, a cut-off T-shirt and dark glasses, he was perched on a tree stump and pointing back at the camera. As was permitted by local regulations at the time, he was not wearing a mask, nor were about 10 people sitting together in the background.

As the number of COVID-19 cases skyrockets nationwide, the extent of the public health response varies from one state — and sometimes one town — to the next. The incongruous approaches and the lack of national standards have created confusion, conflict and a muddled public health message, likely hampering efforts to stop the spread of the virus. The country's top infectious disease expert, Dr. Anthony Fauci, said last month that the country needs “a uniform approach" to fighting the virus instead of a “disjointed" one.

Nowhere are these regulatory disparities more counterproductive and jarring than in the border areas between restrictive and permissive states; for example, between Washington and Idaho, Minnesota and South Dakota, and Illinois and Iowa. In each pairing, one state has imposed tough and sometimes unpopular restrictions on behavior, only to be confounded by a neighbor's leniency. Like factories whose emissions boost asthma rates for miles around, a state's lax public health policies can wreak damage beyond its borders.

“In some ways, the whole country is essentially living with the strategy of the least effective states because states interconnect and one state not doing a good job will continue to spread the virus to other states," said Dr. Ashish Jha, dean of the Brown University School of Public Health. “States can't wall themselves off."

A motorcycle rally in August in Sturgis, South Dakota, with half a million attendees from around the country spread COVID-19 to neighboring Minnesota and beyond, according to Melanie Firestone, an epidemic intelligence service officer for the Centers for Disease Control and Prevention, who co-authored a report on the event's impact.

South Dakota “didn't have policies regarding mask use or event size, and we see that there was an impact in a state that did have such policies," Firestone said. “The findings from this outbreak support having consistent approaches across states. We are all in it together when it comes to stopping the spread of COVID-19."

Viruses don't respect geographic boundaries. While some states require visitors, especially from high-risk areas, to be tested or quarantined, others like South Dakota have no such restrictions. Many people who are tired of strict COVID-19 measures in their states have escaped to areas where everyday life more closely resembles pre-pandemic times. There, with fewer protections, they're at risk of contracting the virus and bringing it back home.

After the Idaho concert, Gilliard started feeling ill and was diagnosed with the coronavirus. For about a week, he stayed in bed. As his condition worsened, he was admitted to a Spokane hospital and placed on a ventilator. He died on Oct. 15. His death certificate lists COVID-19 as the underlying cause.

Going to the Idaho festival likely killed Gilliard, his ex-wife, Robin Ball, said.

“If he had been wearing a mask, not shaking hands and keeping distance, he could probably be alive," she said. “He had been careful before that. He shouldn't have been up there."

The degree of coronavirus regulation tends to track political lines. President-elect Joe Biden carried blue Washington state with 58% of the vote, while President Donald Trump easily won red Idaho with 64%. Trump has helped to fuel the patchwork response to the pandemic, criticizing the approaches of some states, praising others and at times contradicting the advice of his own coronavirus task force and Fauci.

“What really struck me [is] how hard it is to take the pandemic strategy as laid out by the White House with every state on its own and ... implement it because every state is not on its own, they are all interconnected," Jha said.

Biden has said he wants to implement national standards, such as required mask wearing, to help blunt the spread of COVID-19 while acknowledging the federal government lacks little power to do so. He hopes to work with governors and local officials to establish consistent standards across the country.

A lack of such consistency is affecting eastern Washington, which appears to be absorbing some of the costs — both human and economic — of Idaho's more laissez-faire approach to the virus. The rate of new cases in and around Spokane, near the Idaho border, is far higher than in Seattle and western Washington, which experienced one of the earliest outbreaks in the country in February. Although slightly more than half of recent COVID-19 cases in Spokane spread among households or personal contacts, Spokane Regional Health District epidemiologist Mark Springer said, “people bringing back COVID-19 from larger events in Idaho" has been a problem. And with Idaho's rate of new cases now doubling Washington's, Idahoans who commute to the Spokane area pose an outsized danger. At the same time, Washington's shuttered businesses have ceded customers to their Idaho competitors.

Public schools in Washington have also suffered. After opening the school year with remote-only instruction, the Newport School District lost about one-fourth of its 1,200 students. Most of them opted either for specialized online-only programs or for nearby private and public schools across the border in Idaho, which offered in-person learning and sometimes didn't require masks or social distancing, said Newport Superintendent Dave Smith. The plunge in enrollment has led to a $1.2 million drop in funding, he said.

In early October, Newport began some in-person learning but had to return to remote instruction after a COVID-19 outbreak in the community. The source was traced to a Christian church and school only a few feet from the Washington border in Oldtown, Idaho.

“It's incredibly frustrating," Smith said. “I certainly think aligned standards across the nation would have changed our situation."

Washington Gov. Jay Inslee recently called on “Idaho leaders to show some leadership" and be more aggressive in combating COVID-19. He blamed the virus spread in Idaho for straining Washington hospitals. For their part, some in Idaho have complained that the rise of COVID-19 there has more to do with the influx of Washington residents over the summer and fall than with a lighter regulatory touch.

Many of those Washingtonians headed to Coeur d'Alene (pop. 52,400), the seat of Kootenai County and the largest city in northern Idaho. Despite some cancellations, many tourism activities went on as scheduled. The Spokesman-Review newspaper in Spokane ran a feature headlined, “A nearby escape: Coeur d'Alene Resort offers amenities for singles and families." The resort, the article noted, was offering special packages for families that include a pizza-making experience, scenic cruise tickets and discount theme park tickets. In the resort garage, most of the license plates were from Idaho or Washington.

“Yes, the coronavirus exists," the article continued. “However, the luxe Coeur d'Alene Resort is open and taking steps to make an experience as safe as possible." While employees wore masks, the article said, they were optional for guests and about two-thirds opted not to use them. The resort did not respond to requests for comment.

At a park in downtown Coeur d'Alene, a weekly concert series called Live After 5 attracted crowds all summer. Though attendance was lower than in prior years, it swelled as promoters targeted marketing to tourists, concert organizer Tyler Davis said. At one show in July, a member of the band surveyed the large gathering and said, “Look around you guys, it feels kind of normal tonight." Groups of people danced in front of the stage, food trucks lined up along one side and vendors set up tents. Masks were “encouraged but not required."

The day after that show, the Panhandle Health District encompassing five Idaho counties ordered a mask mandate in Kootenai. It required masks in indoor and outdoor public places when a social distance of 6 feet could not be maintained.

Springer, the epidemiologist, watched the flow of Spokane County residents to Idaho with concern. “The issue with Idaho is a somewhat significant one for us in that the restrictions are a pretty stark contrast between what is in Idaho and what we have in Washington," he said. “Coeur d'Alene is a sister community to us."

Jim Gilliard was a popular figure in the blues music community around Spokane and northern Idaho. In the 1990s, he operated a music club outside Coeur d'Alene called Mad Daddy's Blues. He was a talented musician himself, playing keyboards in local blues bands, even after losing a finger and badly injuring two others in a table saw accident.

Gilliard was raised in New York City and Pennsylvania. His father, E. Thomas Gilliard, was an acclaimed ornithologist who served as curator of birds at the American Museum of Natural History and was often gone for months at a time on expeditions to New Guinea. After Gilliard met Ball, the two headed to Colorado and enjoyed life as ski bums, moving from resort to resort for a couple of years before eventually settling in Coeur d'Alene, and having a son. After they divorced two decades ago, she stayed in Coeur d'Alene and he ended up in the village of Valley, Washington. (pop. 164).

Gilliard was one of nearly 300 people who paid $25 each to attend the blues festival, which was held 2 miles up a mountain road outside Priest River, Idaho, a tourist town 6 miles from the Washington border.

Bonner County, where the concert was held, is a rural pocket of defiance against government public health mandates related to the coronavirus. When the local library instituted a mask requirement for users, mask-less demonstrators, some clutching small children, protested and tried to enter the library as staff members stood their ground and explained they were only trying to prevent people from getting sick. The county sheriff wrote to the governor criticizing lockdown orders early in the pandemic, alleging that public health officials misled the public and that “COVID-19 is nothing like the plague."

Concert organizers Billy and Patty Mullaley said they waited until the end of June before deciding to go ahead with it. The only potential roadblock was getting liability insurance at an affordable price during a pandemic, which they were able to do after shopping around.

“At the time, there were not any restrictions" on events like theirs in Idaho, Patty Mullaley said. “We did not take it lightly, having the event. We really put thought into it." They bleached outhouses and the area around the concert stage offered plenty of space for social distancing, she said. Among those most grateful they went ahead, she said, were musicians who had been starved for gigs because of coronavirus-related cancellations. Featured acts included Sammy Eubanks, Coyote Kings and Tuck Foster and the Tumbling Dice.

Mullaley said the festival drew Washington residents eager for events banned in their own state. “From my experience, everyone and their dog from Washington was over here," she said. “Our COVID is probably from people coming over here from Washington."

Few of the hundreds of people at the festival wore masks and many didn't stay socially distant, according to attendees. “Part of what made it magical was people were completely free and happy and not fearful at all," said Sylvia Soucy, who had COVID-19 earlier in the summer. People danced barefoot on the soft sand and mingled with friends, she said.

Mullaley said people socially distanced “as much as possible." In the end, she said, “these were all adults" who made individual decisions. Soucy agreed. “It was completely a choice all of us made," she said. The remote setting — no cellphone service, no electricity and surrounded by hundreds of acres of undeveloped forest — added to the temporary joy of escaping from the virus, Soucy said.

Soucy said she talked to Gilliard there and he was in good spirits, “glad that people were not worried about being able to get together there on the mountain." Gilliard also chatted with other friends, including a former girlfriend, according to Soucy. Ball said the former girlfriend was diagnosed with COVID-19 shortly after the festival and notified Gilliard.

“I don't know why he let his guard down," Ball said. “I will never understand that." In the end, she thinks it had to do with “a long summer of not having a lot of stuff to do. He had been so cautious for those seven or eight months. He just didn't feel like it was going to be a problem."

The Mullaleys said they were unaware of anyone else from the concert getting COVID-19 around that time. But some Washington residents who tested positive for the coronavirus told contact tracers that they had attended the blues festival, according to Matt Schanz, the administrator of Northeast Tri County Health District, a public health agency in Washington covering counties near the Idaho border.

That doesn't definitively mean that they contracted the virus at the festival, he said. “We have 550 cases within three counties, and if you read the summary reports, a decent number of those have some affiliation with Idaho," Schanz said.

South Dakota has largely remained open for business during the pandemic. Gov. Kristi Noem, an ally of Trump's, has refused to impose a mask mandate, saying there are questions about its effectiveness. The state has not placed any restrictions on bars and restaurants and officials allowed the 10-day motorcycle rally in Sturgis. Such a rally would have been prohibited in Minnesota. Both Minnesota and South Dakota are in the top five states when it comes to rates of cases per capita over the last week.

The CDC advises that outdoor events are less risky than indoor ones. The Sturgis rally, which featured events in both settings, is now linked to at least 86 COVID-19 cases in Minnesota, including four people who were hospitalized and one death, according to a CDC report released in November. The report said the total is likely an undercount as some of those infected declined to share their close contacts with health officials.

“These findings highlight the far-reaching effects that gatherings in one area might have on another area," the researchers wrote. They added, “This rally not only had a direct impact on the health of attendees, but also led to subsequent SARS-CoV-2 transmission among household, social, and workplace contacts of rally attendees upon their return to Minnesota."

Mike Kuhle, the mayor of Worthington, Minnesota, said South Dakota's approach to the pandemic “is a source of heartburn for me and sleepless nights." His city is close to both the South Dakota and Iowa borders. In addition to worries about the virus spreading from South Dakota, Kuhle said, “during the lockdown people have gone to Sioux Falls for shopping. It's ugly for our businesses."

A similar dynamic has played out in the Quad Cities area at the border of Illinois and Iowa. There, thousands of people cross bridges over the Mississippi River every day to work, visit family and shop in each state.

As cases in Iowa began to surge this summer, Gov. Kim Reynolds dismissed mask mandates as “feel-good" measures that are difficult to enforce. Until recently, Iowa restaurants and gyms were allowed to operate at full capacity as long as social distancing measures were in place. There was no state-imposed limit on the size of social gatherings. Nicknamed “COVID Kim" by her critics, Reynolds changed course in mid-November in the face of surging cases and hospitalizations, requiring masks.

Illinois clamped down earlier and harder, instituting a mask mandate at the end of April. Movie theaters opened in Iowa before those in Illinois. Iowa never closed its golf courses when neighboring states like Illinois did.

For Illinois businesses, the gap between the two states' regulations has been crushing, said Paul Rumler, the president of the Quad Cities Chamber.

“A river runs through it but otherwise this is one community," he said. On the Illinois side, “we have retailers and restaurants who want to be responsible corporate citizens and follow the guidelines knowing they are at a disadvantage from a business literally 3 miles away."

Rumler said the chamber advocated for the two states to have a consistent approach to the pandemic to no avail. “If there was a federal standard, it would eliminate the confusion of our region," he said. “It would make our life a lot easier."

Debbie Freiburg, a volunteer contact tracer for the county encompassing the Illinois side of the border, said the looser restrictions in Iowa offered Illinois residents the chance to “take a break" from the virus.

“It's bad and the differences are huge, unfortunately," she said. “I can be in Iowa in 10 minutes, and there were a lot of us going shopping in Iowa."

Freiburg, who retired to the area after working as a pediatric cancer nurse in Washington, D.C., said cases in her Illinois county have been tracked to Iowa, including several from a large wedding at a hotel just over the border.

Tensions between Washington and Idaho over their divergent responses to the pandemic escalated in October. As the count of COVID-19 cases climbed, the board of the Panhandle Health District in Idaho voted 4-3 to rescind the mask order it had imposed on Kootenai County three months before. Officials in Washington were stunned. Inslee, the governor, refused to rule out restrictions on border traffic.

The move by the health board came amid growing resistance in the state to mandatory public health measures to control the virus and skepticism that COVID-19 was even real.

A group of Idaho politicians, including Lt. Gov. Janice McGeachin, appeared in a video in October urging the state to limit restrictions. Sitting in a truck with an American flag draped over the side, McGeachin placed a gun over a Bible. “We recognize that all of us by nature are free and equal and have certain inalienable rights," she said. A legislator in the video said “the pandemic may or may not be occurring."

State Rep. Tony Wisniewski, who represents Kootenai and also appeared in the video, urged the health board to make masks optional. He compared the mask mandate to what he said was a requirement in Nazi Germany to tell authorities if a neighbor was Jewish.

Health board member Allen Banks said he was “deeply suspicious" of tests for COVID-19. In an email to a senator who had criticized the board's mask mandate, he wrote, “I hope you and the legislators who support your effort will continue to stand for truth rather than the fantasy of a phony disease based on a false test."

Board member Walt Kirby, who had voted in July to approve the mask mandate initially, was the deciding vote. He opposed a mandate because people were “pretty damn nasty" to him for supporting it before, he explained. “I am not going to vote for it, I am just not because no one is wearing the damn masks anyway," Kirby said, adding that he wears a mask. As for people who ignore the advice of public health experts, he said, “I am just sitting back and watching them catch it and die and hopefully I will live through it. You know I am 90 years old already and I am not getting involved in it anymore."

Even as the requirement was rescinded, cases in Kootenai were soaring. The rate of hospitalizations in the border area in northern Idaho is nearly double the rate in the Spokane region. Overall, the number of new cases in Idaho per capita is almost twice that of Washington.

With the county mandate overturned, the city of Coeur d'Alene considered in late October whether to adopt one on its own. Mayor Steve Widmyer and the City Council were inundated with hundreds of emails and telephone calls, many from mask opponents.

“This is Idaho, not Washington or California," wrote one resident. “Let the people decide if they wish to mask up or not." Another told the city leaders, “If you want to live with a mask 'muzzle' on your face move to California or Washington."

Ball, Gilliard's ex-wife, urged Widmyer to support a mandate. “People come here so they don't have to wear a mask and fill our bars and businesses while spreading covid," she wrote.

In Coeur d'Alene, the mayor only votes to break a tie among the city councilors. Widmyer, who had complained that city officials “shouldn't have been put into this position," didn't have to vote, because the council approved the mandate 4-2 on Oct. 26. Protesters outside chanted, “No more masks, we will not comply," and the blowback has been swift. A group of residents is pushing to recall the pro-mandate councilors. The mayor did not respond to interview requests.

While Coeur d'Alene adopted a mandate, nearby Post Falls and Hayden rejected similar proposals. All three cities are less than 20 miles from the Washington border. Idaho Gov. Brad Little has also remained steadfast in opposition to the idea, unlike Iowa's Reynolds. “Idaho's health officials have been mindful of the challenges of mitigating spread of COVID-19 in border communities since the onset of the pandemic," a spokeswoman for Little said in an email. The governor's “priority at this time is mitigating the spread of COVID-19 in Idaho and preserving health care capacity for those in need."

For the Panhandle health board, however, the situation became too dire to ignore. On Nov. 19 it reversed itself again and passed a mask mandate for all five of its counties, including Bonner, the site of the blues festival. But county sheriffs have ignored enforcing the mandate or made it a low priority, according to local media.

The move came too late to save Gilliard. “Until everyone in this country can do the same thing, all states on the same page, limit crowd size and mask mandates that are enforced, this is going to happen," said Ball, his ex-wife. “It only makes sense. Because what we have been doing hasn't been working."

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