Tag: Hospitals

Worn-Out Nurses Hit the Road for Better Pay, Stressing Hospital Budgets — and Morale

In parts of the country where covid-19 continues to fill hospitals, a rotating cast of traveling nurses helps keep intensive care units fully staffed. Hospitals have to pay handsomely to get that temporary help, and those higher wages are tempting some staff nurses to hit the road, too.

Nearly two years into the pandemic, there’s some truth in a joke circulating among frustrated ICU nurses: They ask their hospitals for appropriate compensation for the hazards they’ve endured. And the nurses are rewarded with a pizza party instead.

Theresa Adams said that’s what happened at the Ohio hospital where she worked. The facility across town was offering bonuses to keep its nurses from leaving. But not hers. They got a pizza party.

“I heard a lot of noise about ‘Well, this is what you signed up for.’ No, I did not sign up for this,” she said of the unparalleled stress brought on by the pandemic.

Adams is an ICU nurse who helped build and staff covid units in one of Ohio’s largest hospitals. She recently left for a lucrative stint as a travel nurse in California.

Travel nurses take on temporary assignments in hospitals or other health care facilities that have staffing shortages. The contracts typically last a few months and usually pay more than staff positions.

Adams hopes to return to her home hospital eventually, though she’s irritated at management at the moment.

“I did not sign up for the facility taking advantage of the fact that I have a calling,” she said. “There is a difference between knowing my calling and knowing my worth.”

A reckoning may be on its way as hospitals try to stabilize a worn-out workforce.

The use of traveling nurses took off in the 1980s in response to nursing shortages. Although they’ve always been paid more for their flexibility, some traveling ICU nurses can now pull in as much as $10,000 a week, which can be several times more than staff nurses earn.

While some hospitals have offered retention bonuses or increased pay for permanent staff members, nurses say it doesn’t compare to the financial bonanza of traveling. Hospital managers now find themselves trapped in a pricey hiring cycle — competing for, in particular, the most highly trained critical care nurses who can monitor covid patients on the advanced life-support devices known as ECMO (extracorporeal membrane oxygenation) machines.

“Our turnover for ECMO nurses is incredible, because they’re the most seasoned nurses. And this is what all my colleagues are facing, too,” said Jonathan Emling, a nurse and the ECMO director at Ascension St. Thomas Hospital in Nashville.

The shortage of ECMO nurses has prevented the hospital from admitting additional covid patients who need their blood oxygenated outside their body, he said. No more staff nurses have enough experience to start the training.

“We will train these people and then six months later they will be gone and traveling,” Emling said. “So it’s hard to invest so much in them trainingwise and timewise to see them leave.”

And when they leave, hospitals are often forced to fill the spot with a traveler.

“It’s like a Band-Aid,” said Dr. Iman Abuzeid, co-founder of a San Francisco nurse recruiting company called Incredible Health. “We need it now, but it is temporary.”

Incredible Health helps to quickly place full-time staff nurses in some of the country’s largest health systems. The number of listings for full-time, permanent nurses on the company’s platform has shot up 200% in the past year.

To help hospitals, some states are chipping in to hire travel nurses. But for many hospitals, the higher costs are straining their budgets, which is especially difficult for those that have suspended elective surgeries — often a hospital’s biggest moneymaker — to accommodate covid patients.

“Every executive we interact with is under pressure to reduce the number of traveler nurses on their teams, not just from a cost standpoint but also from a quality-of-care standpoint,” Abuzeid said.

It’s hard on morale as well: Camaraderie suffers when newcomers need help finding syringes or other supplies but may be paid two or three times as much as the staff nurses showing them the ropes.

Some hospitals are trying to stop the turnover by offering big signing bonuses to permanent nurses, as well as loan forgiveness or tuition assistance to pursue additional education. Hospitals have also hiked pay for nurses as they earn certifications, especially in critical care.

Other medical centers are looking outside the U.S.

Henry Ford Health System in Michigan announced plans to bring in hundreds of nurses from the Philippines. Smaller community hospitals are looking abroad, too. City-owned Cookeville Regional Medical Center, in a Tennessee town of 35,000, is now recruiting its first foreign nurses.

“The cost for what we pay for a local recruiter to bring us one full-time staff member is more expensive than what we are going to be spending to bring one foreign nurse,” said Scott Lethi, chief nursing officer at Cookeville Regional.

Lethi hopes the staffers from overseas will decide to stay more than a year or two. He said even new nurses sometimes leave or burn out: Cookeville hired a few recent graduates of U.S. nursing programs who quit after just a few months.

Among ICU nurses of all ages, two-thirds have considered leaving the profession because of the pandemic, according to a survey published in September by the American Association of Critical-Care Nurses.

When a nurse leaves — whether to retire, become a travel nurse or work in another field — the remaining nurses can be stretched dangerously thin, caring for more patients at once. Covid patients are particularly demanding, especially those on ventilators or ECMO machines who may require one-on-one care round-the-clock. Covid patients may be hospitalized for weeks or months.

“My ability to care for people has suffered. I know that I have missed things otherwise I would not have missed had I had the time to spend,” said Kevin Cho Tipton, an advanced practice nurse in the South Florida public health system. “Many of us feel like we’re becoming worse at our jobs.”

The worry about providing substandard care weighs heavily on nurses. But in the end, Tipton said, it’s the patients who suffer.

This story is part of a partnership that includes WPLN, NPR and KHN.

Journalists Tell How Covid Complicates Organ Transplants and the Health of Rural America

KHN senior correspondent JoNel Aleccia discussed organ transplants and the covid-19 vaccine on NBC’s “NBC Now” on Oct. 8.


KHN Midwest correspondent Lauren Weber discussed covid deaths in rural America on Iowa Public Radio’s “River to River” on Oct. 7.


Cómo hacer desaparecer una deuda médica: 5 consejos para usar la asistencia caritativa del hospital

¿Qué pasa si se aprueba una ley pero nadie la hace cumplir? Eso es básicamente lo que ha ocurrido con una pequeña pero útil normativa sobre los hospitales y la asistencia financiera para cubrir facturas médicas.

La Ley de Cuidado de Salud a Bajo Precio (ACA), también conocida como Obamacare, requiere que los hospitales sin fines de lucro pongan a disposición de los pacientes de bajos ingresos asistencia financiera, y que publiquen esas políticas en línea.

En los Estados Unidos, más de la mitad de los hospitales son sin fines de lucro, y en algunos estados todos o casi todos los hospitales lo son. Pero muchas personas que califican para recibir asistencia financiera —o “atención caritativa”, como también se la llama— nunca la solicitan.

Jared Walker está ayudando a correr la voz. Ha fundado Dollar For, una organización que ayuda directamente a las personas a utilizar las normas de asistencia financiera de los hospitales para hacer frente a las facturas médicas imposibles de pagar. Walker se ganó la atención del público a principios de este año a través de un TikTok viral que hizo una noche de manera informal.

En el video, de 60 segundos, Walker expone los aspectos básicos de la solicitud de asistencia financiera hospitalaria, en respuesta a un aviso que le pide a los TikTokers compartir “algo que hayas aprendido y que pareciera ilegal saber”.

“La mayoría de los hospitales de los Estados Unidos no tienen ánimo de lucro, lo que significa que deben tener políticas de asistencia financiera o de atención caritativa”, dice en el video. “Esto va a sonar raro, pero lo que esto significa es que si ganas menos de cierta cantidad de dinero el hospital tiene la obligación legal de perdonar tus facturas médicas”.

En el video se explican los fundamentos de la solicitud de atención caritativa en los hospitales, y eso es lo que él dice que utiliza para “erradicar” las facturas médicas.

An Arm and a Leg”, un podcast sobre el costo de la atención médica, ha estado cubriendo el trabajo de la asociación de Walker desde que el video se convirtió en viral, así como la batalla de décadas por establecer las reglas de caridad.

Las siguientes son cinco estrategias que Walker comparte durante las sesiones mensuales de formación de voluntarios:

1. ¿Cómo encontrar estas normas?

El truco de Walker para encontrar la política de asistencia financiera de un hospital es muy sencillo: búscalo en Google. Escribe el nombre del hospital, seguido de “política de asistencia financiera” o “política de atención caritativa”. Los primeros resultados de la búsqueda serán probablemente un resumen de la política y una aplicación.

Tu primera intención puede ser ir a la página principal del hospital. Pero probablemente sea un error. Según Walker, estas normas suelen estar ocultas en los menús de los sitios web de los hospitales. En muchos estados, las leyes de atención caritativa son más específicas que lo que se indica en ACA, y los hospitales pueden estar obligados a destacarlas de manera prominente.

Es raro que estas normas no estén disponibles en línea en absoluto, pero en algunos casos, dijo Walker, puede que tengas que llamar al hospital y pedirles una solicitud.

2. ¿Quién califica?

La mayoría de las políticas de atención caritativa de los hospitales se basan en los ingresos, utilizando porcentajes de las directrices federales de pobreza para definir la elegibilidad. En un ejemplo, Walker mostró las directrices del Hospital St. Luke’s de Kansas City, donde los pacientes que ganan el 200% de los niveles federales de pobreza son responsables del 0% de su factura. Esa cifra era de poco más de $2,000 al mes en 2021. Aquellos que ganan entre el 201% y el 300% eran elegibles para ciertos descuentos.

¿No tienes claro cómo se comparan tus ingresos con los niveles federales de pobreza? Hay calculadoras en internet que te ayudarán. Recuerda que tu hogar eres tú, más tu cónyuge, y cualquier persona que declares como dependiente en tus impuestos. Quienes comparten la vivienda no cuentan.

Las solicitudes suelen requerir documentación que demuestre tus ingresos. Los hospitales piden cosas como talones de pago recientes, prueba de desempleo, cartas de concesión de la Seguridad Social y declaraciones de impuestos, según Walker. Los documentos exactos que puede pedir el hospital pueden variar. Pero un hospital no puede negarte la ayuda por no proporcionar un documento que no se especifica en la solicitud.

3. ¿Presionado por los pagos? Todavía puedes tener tiempo

El IRS exige a los hospitales sin fines de lucro que den a los pacientes un período de gracia de 240 días (unos ocho meses), a partir de la fecha de facturación inicial, para solicitar asistencia financiera. Pero los hospitales están autorizados a enviar las facturas a las agencias de cobro mucho antes, a menudo después de sólo 120 días.

En ese momento, los pacientes suelen sentirse acosados por las notificaciones de las agencias de cobro. Aun así, les pueden quedar meses para solicitar asistencia financiera, y avisar a las agencias de que se está tramitando una solicitud con el hospital puede, a veces, frenar el envío de cartas.

“El hospital puede sacarte de los cobros con la misma facilidad con la que te mete en ellos”, afirmó Walker.

En algunos casos, los hospitales perdonan las facturas que tienen más de 240 días. E incluso de varios años atrás, dijo Walker. No está de más pedir ayuda.

4. ¿Parece que no vas a calificar? Escribe una carta

Si no cumples los requisitos basados únicamente en los ingresos, pero sigues sin poder pagar las facturas del hospital, no te desanimes. Lo mismo ocurre si la política de ayuda financiera del hospital especifica que sólo pueden calificar las personas no aseguradas; es posible que tengas un seguro, pero que aun así te encuentres con facturas gigantescas que no puedes pagar.

Walker aseguró que mandar una carta explicando las dificultades financieras junto con la solicitud puede ser de gran ayuda. De hecho, anima a todos los pacientes a que adjunten una carta, aunque su solicitud parezca sólida.

“Hay otros seres humanos que las leen y las cartas son de gran ayuda”, dijo. En última instancia, cada hospital decide quién recibe la asistencia que está legalmente obligado a proporcionar. Presenta tu caso.

5. Sí, es posible que tengas que enviarla por fax

Aunque muchos hospitales disponen de portales digitales que permiten pagar las facturas en línea, no suele haber un equivalente para solicitar asistencia financiera. Muchas solicitudes sólo ofrecen una dirección postal. Pero Walker y su equipo han comprobado que las solicitudes enviadas por correo se pierden con frecuencia.

En su lugar, recomiendan llevar la solicitud al hospital y entregarla en mano o enviarla por fax. Las bibliotecas públicas, los locales de FedEx y ciertos servicios en línea hacen posible el envío por fax incluso si, como la mayoría de la gente, no ha utilizado un aparato de fax desde finales de los años 90.

Cuando se trata de acceder a la atención benéfica, “vas a tener que pasar por saltar un montón barreras”, señaló Walker, “pero vale la pena”.

Emily Pisacreta es reportera y productora de “An Arm and a Leg”, un podcast sobre el costo de la atención sanitaria que es coproducido con KHN.

How to Crush Medical Debt: 5 Tips for Using Hospital Charity Care

What if a law passed but no one enforced it? That’s essentially what has happened with one small but helpful rule about hospitals and financial assistance for medical bills.

The Affordable Care Act, the health law also known as Obamacare, requires nonprofit hospitals to make financial assistance available to low-income patients and post those policies online. Across the U.S., more than half of hospitals are nonprofit — and in some states all or nearly all hospitals are nonprofit. But many people who qualify for financial assistance — or “charity care,” as it is sometimes known — never apply.

Jared Walker is helping get the word out. He founded Dollar For, an organization that directly helps people use hospital financial assistance policies to overcome unaffordable medical bills. Walker earned the public’s attention early this year through a viral TikTok he made on a lark, late one night.

In the 60-second video, Walker outlines the basics of applying for hospital financial assistance, in response to a prompt that asks TikTokers to share “something you’ve learned that feels illegal to know.”

“Most hospitals in America are nonprofits, which means they have to have financial assistance or charity care policies,” he says in the video. “This is going to sound weird, but what that means is if you make under a certain amount of money the hospital legally has to forgive your medical bills.”

The video outlines the basics of applying for hospital charity care, which he says he uses to “crush” medical bills.

An Arm and a Leg,” a podcast about the cost of health care, has been covering Walker and his organization’s work since the video’s viral moment, as well as the decades-long fight to establish charity care rules that preceded it.

Here are five strategies Walker endorses and shares during monthly volunteer training sessions:

1. How do you find the policy?

Walker’s trick for finding a hospital’s financial assistance policy is as straightforward as it gets: Google it. Enter the hospital’s name, followed by “financial assistance policy” or “charity care policy.” The first search results are likely to be an outline of the policy and an application to submit.

Your first instinct might be to go to your hospital’s home page. But that’s likely a mistake. Policies tend to be hidden from hospital website menus, according to Walker. In many states, charity care laws are more specific than what’s outlined in the ACA, and hospitals may be required to display their financial assistance policies prominently.

It’s rare for the policies not to be available online at all, but in some cases, Walker said, you may need to call the hospital and ask for an application.

2. Who qualifies?

Most hospital charity care policies are income-based, using percentages of the federal poverty guidelines to define eligibility. In an example, Walker showed the guidelines for St. Luke’s Hospital of Kansas City, where patients earning 200% of the federal poverty guidelines were responsible for 0% of their bill. That figure was just over $2,000 a month in 2021. Those making 201% to 300% were eligible for certain discounts.

Not sure how your income compares to the federal poverty guidelines? Here’s one of many helpful online calculators. Remember, your household is you, plus your spouse, plus anyone you claim as a dependent on your taxes. Roommates don’t count.

Applications typically require documentation to prove your income. Hospitals ask for things like recent pay stubs, proof of unemployment, Social Security award letters and tax returns, according to Walker. Exactly which documents the hospital may ask for can vary. But a hospital can’t deny you for failing to provide a document that isn’t spelled out in the application.

3. In collections? You may still have time.

The IRS requires nonprofit hospitals to give patients a grace period of 240 days (about eight months) from the initial billing date to apply for financial assistance. But hospitals are allowed to send bills to collection agencies much earlier than that — often after just 120 days.

At that point, patients often feel as though they’re being hounded by notifications from collection agencies. Still, patients may have months remaining to apply for financial assistance, and alerting the collection agents that an application with the hospital is in process can sometimes stop the letters.

“The hospital can take you out of collections just as easily as they put you there,” Walker said.

In some cases, hospitals will forgive bills that are much older than 240 days. When in doubt, applying may be worth it even for bills that are several years old, Walker said. It does not hurt to ask for help.

4. Looks like you won’t qualify? Write a letter.

If you don’t qualify on income alone but you still can’t afford your hospital bills, don’t rule yourself out. The same applies if the hospital’s financial aid policy specifies that only uninsured people qualify; you might have insurance but are still looking at giant bills you can’t pay.

Walker said a letter of financial hardship attached to an application can help. In fact, he encourages each patient to attach a letter, no matter how strong their application seems.

“These are real people reading these and the letters go a long way,” he said. Ultimately, each hospital is making a judgment call about who gets the assistance it is legally obligated to provide. Make your case.

5. Yes, you may need to fax it in.

While many hospitals have digital portals to enable online bill-paying, there’s usually no equivalent for applying for financial assistance. Many applications offer only a mailing address. But Walker and his team have found that applications sent by mail frequently get lost.

Instead, they recommend either walking the application into the hospital and delivering it by hand or faxing it. Public libraries, packaging stores like FedEx and certain online services make faxing possible even if, like most people, you haven’t used a fax machine since the late 1990s.

When it comes to accessing charity care, “you’re gonna have to jump through a lot of hoops,” Walker said, “but it’s worth it.”

Emily Pisacreta is a reporter and producer with “An Arm and a Leg,” a podcast about the cost of health care that is co-produced with KHN.

6 Months to Live or Die: How Long Should an Alcoholic Liver Disease Patient Wait for a Transplant?

The night before Brian Gorzney planned to check into rehab for alcohol use, he began vomiting blood. First at 2 a.m. Then 5. And again at 11.

When he arrived at the rehab facility in North Kansas City, Missouri, they sent him directly to the adjoining hospital. There, Gorzney, then 50, and his family learned he had severe alcoholic hepatitis, an inflammation of the liver typically associated with excessive alcohol use.

Gorzney had been drinking heavily on and off for years and, by February 2020, was having as many as a dozen drinks a day. His only chance of survival was a liver transplant, doctors said.

“So let’s do that,” his daughter Cameron Gorzney, now 22, told them. She was ready for anything that would save her dad, the man who had coached her softball team until high school and later cheered from the stands at every game.

But Gorzney wasn’t eligible for a transplant, the doctors said. He hadn’t been six months sober.

In the U.S., a widespread practice requires patients with alcoholic liver disease to complete a period of sobriety before they can get on the waiting list for a liver.

This informal policy, often called “the 6-month rule,” can be traced to the 1980s. The thinking then — and among proponents of the practice today — was that six months of abstinence gave a patient’s liver time to heal and, thus, avoid a transplant. If that didn’t work, the patient would have proven they can stay sober and would not return to drinking after a transplant.

However, a landmark European study published in 2011 and several American studies in the decade since have exposed flaws in that premise. Six months of abstinence is not a good predictor of long-term sobriety, and for people with conditions like Gorzney’s, more than half die within that time. Now, as the understanding of addiction evolves — viewing it as a disease rather than a personal failing — many surgeons and families say the six-month hold unfairly penalizes those with substance use disorder. And with alcoholic liver disease rising among young adults and pandemic-related drinking exacerbating those numbers, it has become a pressing concern.

“We have to move beyond denying people lifesaving therapy because we think they don’t deserve it,” said Dr. Andrew Cameron, head of the liver transplant program at Johns Hopkins Medicine in Baltimore. Doctors don’t withhold treatment from people with diabetes who are obese or people with sexually transmitted infections who had unprotected sex, he said.

Cameron and his colleagues published a study this August, which found that among patients with alcoholic liver disease who were made to wait six months and those who were not, about 20% in each group returned to drinking one year after their transplants. That means about 80% stayed sober, regardless of how long they abstained from alcohol before the surgery.

“There was nothing at all helpful or predictive about a six-month waiting period,” Cameron said.

No national regulation determines how long a patient needs to be abstinent before being added to the waitlist; each transplant center sets its own policies. As of 2019, only about one-third of liver transplant hospitals in the U.S. had performed a transplant without one. Patients who don’t live near those hospitals — or don’t have the knowledge and resources to get to them — can die without ever making it onto the waitlist, Cameron said.

On the other hand, some physicians worry abandoning the six-month rule could overwhelm the limited supply of donor organs. With nearly 12,000 people on the waiting list for a liver, it’s crucial to ensure patients who receive transplants are ready to care for themselves and the “gift of the donated organ,” said Dr. Kenneth Andreoni, a transplant surgeon and past president of the United Network for Organ Sharing, which manages the nation’s transplant system. (UNOS determines who ultimately receives a donor organ, but it does not determine who can or cannot be put on the waitlist.)

Since 2016, alcoholic liver disease has been the most commonly identified justification for a liver transplant, and since these patients often have dire prognoses with little time to live, they can quickly jump to the top of the waiting list, surpassing those with liver cancer or other diseases. When one patient receives a liver, “someone else is not getting that organ,” Andreoni said. “It’s just math.”

He said more long-term research is needed. “If all these people [who receive transplants without the waiting period] are doing great and living 15 years, then that’s the right answer.” Only time and statistics will tell.

Dr. Josh Levitsky, treasurer of the American Society of Transplantation, said some hospitals may worry that transplanting organs into patients with a higher risk of relapse could result in poor outcomes and threaten their accreditation or insurance contracts.

In fact, some insurance companies require patients to provide documentation of a sobriety period before agreeing to cover the cost of surgery. A study examining Medicaid policies in 2017 found 24 states had such policies, while 14 did not. (Twelve states didn’t perform any liver transplants that year.)

In Brian Gorzney’s case, insurance wasn’t the issue. Finding a hospital to say yes was.

When the team at North Kansas City Hospital, which is not a transplant center, suggested Gorzney look into hospice options, his family refused. They took him across state lines to the University of Kansas Health System for a second opinion.

There, Gorzney’s daughter Cameron, his ex-wife (Cameron’s mom), his then-girlfriend and his sister teamed up to explain why they knew Gorzney would stay sober and care for a new liver responsibly. He had held steady jobs throughout his life, they said. He had never had a DUI. He coached his daughters’ softball teams and was like a father figure to his sister, who is 10 years younger. He was headed to rehab before this crisis started, and he had a supportive family to help him sustain sobriety after surgery.

But, ultimately, the hospital’s transplant committee said no.

Brian Gorzney developed severe alcoholic hepatitis in February 2020. His liver was inflamed after years of alcohol abuse. His only chance of survival was a liver transplant. (Jennifer Evans-Page)
In May 2021, more than a year after his liver transplant, Brian Gorzney attended his daughter Cameron’s college graduation. (Jennifer Evans-Page)

In a statement about the general transplant process, Dr. Ryan Taylor, medical director of liver transplantation at the hospital, said each candidate is reviewed by a committee of more than 30 members. “High risk transplant patients may be required to complete 6 months of counseling to demonstrate an ongoing commitment to sobriety,” he wrote, but there is an “expedited pathway” for people with alcoholic hepatitis who also have a “low risk for recidivism.”

Gorzney was considered for this pathway, but the committee didn’t approve him, his daughter Cameron said.

She was devastated by the no. But she’s stubborn, she said, just like her dad. So, she and the rest of the family frantically scoured news articles and academic studies and called transplant hospitals across the country for another option.

“My dad was really deteriorating each day,” she said.

They finally settled on the University of Iowa, where Cameron Gorzney had attended her first year of college and heard of its renowned medical system. The family made their case on Gorzney’s behalf again. This time, they got a yes. The family’s group text exploded, Cameron recalled.

Dr. Alan Gunderson, medical director of liver transplantation at the University of Iowa Hospitals and Clinics, said most hospitals that allow transplants without the six-month wait look at similar factors: the patient’s medical need, financial stability, social support, understanding of their addiction and desire to recover. But the subjectivity of these measures means different transplant committees can come to different decisions.

In a letter to Gorzney, the Iowa transplant team explained they’d typically recommend a six-month waiting period but were approving him for the waiting list immediately because he wouldn’t survive otherwise. In return, Gorzney agreed to attend counseling and treatment programs after the transplant.

Within 24 hours of being put on the waitlist, Gorzney received a new liver.

Today, more than a year and a half later, Gorzney, 52, is still sober and embracing the “opportunity to be somebody that I haven’t been in a while,” he said.

He and his girlfriend are engaged, and he’s grateful to see his daughters, Cameron and Carson, grow into young adults. A lifelong Illinois Fighting Illini football fan, he even considers rooting for the Iowa Hawkeyes now.

But it worries him that the six-month rule, which led his family to travel to three hospitals in three states, still stymies others.

“People are, unfortunately, passing away … not knowing that there may be other options for them because they don’t have a support group that I had that was aggressive enough and strong enough to reach out and not accept no on the first response they got.”

Trabajadores de salud alertan sobre el aumento de violencia en hospitales

El departamento de emergencias del Hospital San Leandro, en California, donde trabaja la enfermera Mawata Kamara, se cerró de urgencia cuando un visitante, preocupado por no poder ver a un paciente por las restricciones de covid-19, amenazó con volver con un arma.

No fue la primera vez que el departamento se enfrentó a una amenaza de arma de fuego durante la pandemia. A principios de año, un paciente psiquiátrico al que todos conocían se volvió cada vez más violento, gritando insultos raciales, escupiendo a los empleados y lanzando puñetazos antes de amenazar con dispararle a Kamara en la cara.

“La violencia siempre ha sido un problema”, dijo Kamara. “Esta pandemia realmente solo le puso una lupa”.

En los primeros días de la pandemia, las celebraciones nocturnas elogiaban la valentía de los trabajadores sanitarios de primera línea. Un año y medio después, esos mismos trabajadores dicen que están experimentando un aumento alarmante de la violencia en sus lugares de trabajo.

Una enfermera testificó ante un comité del Senado de Georgia en septiembre que un paciente la atacó tan severamente la primavera pasada que terminó en la sala de emergencias de su propio hospital.

En el Research Medical Center en Kansas City, en Missouri, la unidad de covid llamó a seguridad, contó la enfermera Jenn Caldwell, cuando un visitante gritó agresivamente al personal de enfermería sobre la condición de su esposa, que era una paciente.

En Missouri, las agresiones físicas contra las enfermeras se han triplicado, y llevó a Cox Medical Center Branson a colocar botones de pánico en las tarjetas de identificación de los empleados.

Los ejecutivos de los hospitales ya estaban en alerta por este fenómeno desde antes que estallara la pandemia. Pero dicen que las tensiones de covid han exacerbado el problema, lo que ha provocado un refuerzo de la seguridad, entrenamientos para lidiar con situaciones de violencia y pedidos de civilidad.

Y mientras muchos hospitales trabajan para abordar el problema por sí mismos, las enfermeras y otros trabajadores están impulsando una legislación federal para crear estándares aplicables en todo el país.

Paul Sarnese, ejecutivo de Virtua Health en Nueva Jersey y presidente de la Asociación Internacional para la Seguridad y Protección de la Atención Médica, dijo que muchos estudios muestran que los trabajadores de salud tienen muchas más probabilidades de ser víctimas de agresión agravada que los trabajadores de cualquier otra industria.

Datos federales muestran que los trabajadores de salud enfrentaron el 73% de todas las lesiones no fatales por violencia en el lugar de trabajo en los Estados Unidos en 2018. Es demasiado pronto para tener estadísticas completas de la pandemia.

Aun así, Michelle Wallace, directora de enfermería de Grady Health System en Georgia, dijo que la violencia probablemente sea aún mayor porque muchas víctimas de agresiones de pacientes no los denuncian.

“Nos decimos que esto es parte de nuestro trabajo”, dijo Wallace, quien aboga por más denuncias.

Caldwell dijo que había sido enfermera por menos de tres meses la primera vez que fue agredida en el trabajo: un paciente la escupió. En los cuatro años que pasaron desde entonces, estima que no han pasado más de tres meses sin que haya sido agredida verbal o físicamente.

“No diría que se espera, pero se acepta”, dijo Caldwell. “Tenemos muchas personas con problemas de salud mental que entran por nuestras puertas”.

Jackie Gatz, vicepresidente de seguridad y preparación de la Missouri Hospital Association, dijo que la falta de recursos de salud conductual puede estimular la violencia cuando los pacientes buscan tratamiento para problemas de salud mental y trastornos por uso de sustancias en las salas de emergencia.

La vida también puede derramarse dentro del hospital, con episodios violentos que comenzaron afuera y continuar adentro, o la presencia de agentes del orden aumentando las tensiones.

Un informe de febrero de 2021 de National Nurses United, el sindicato en el que tanto Kamara como Caldwell son representantes, ofrece otro factor posible: niveles de personal que no permiten a los trabajadores el tiempo suficiente para reconocer y aliviar situaciones posiblemente volátiles.

Las enfermeras de la unidad de covid también han asumido responsabilidades adicionales durante la pandemia. Otros miembros del personal del hospital suelen realizar tareas como alimentar a los pacientes, extraer sangre y limpiar las salas, pero las enfermeras han colaborado en esos trabajos para minimizar la cantidad de trabajadores que visitan las salas de presión negativa donde se tratan a los pacientes con covid.

Si bien la carga de trabajo ha aumentado, la cantidad de pacientes que supervisa cada enfermera no ha cambiado, lo que deja poco tiempo para escuchar las preocupaciones de los visitantes que temen por el bienestar de sus seres queridos, como el hombre que gritó agresivamente a las enfermeras en la unidad de Caldwell.

En septiembre, el 31% de las enfermeras hospitalarias encuestadas por ese sindicato dijeron que habían enfrentado violencia en el lugar de trabajo, frente al 22% de marzo.

El doctor Bryce Gartland, presidente del grupo de hospitales de Emory Healthcare, con sede en Atlanta, dijo que la violencia se intensificó a medida que avanzaba la pandemia, particularmente durante la última ola de infecciones, hospitalizaciones y muertes.

“Los trabajadores de atención médica de primera línea y los socorristas han estado en el campo de batalla durante 18 meses”, dijo Garland. “Están agotados”.

Al igual que el aumento de la violencia en los aviones, en los estadios deportivos y en las reuniones de la junta escolar, las crecientes tensiones dentro de los hospitales podrían ser un reflejo de las crecientes tensiones fuera.

William Mahoney, presidente del Cox Medical Center Branson, dijo que la ira política nacional se manifiesta a nivel local, especialmente cuando el personal pide a las personas que entran al hospital que se pongan una máscara.

Caldwell, la enfermera de Kansas City, dijo que la naturaleza física de las infecciones por covid puede contribuir a un aumento de la violencia. Los pacientes de la unidad de covid a menudo tienen niveles de oxígeno peligrosamente bajos.

“La gente tiene diferentes puntos de vista políticos, ya sea CNN o Fox News, y comienzan a gritarte”, dijo Mahoney.

“Cuando eso sucede, se vuelven confusos y también extremadamente combativos”, dijo Caldwell.

Sarnese dijo que la pandemia ha dado a los hospitales la oportunidad de revisar sus protocolos de seguridad. Limitar los puntos de entrada para permitir la detección de covid, por ejemplo, permite a los hospitales canalizar a los visitantes más allá de las cámaras de seguridad.

Research Medical Center recientemente contrató oficiales de seguridad adicionales y brindó capacitación para reducir la tensión para complementar su videovigilancia, dijo su vocera Christine Hamele.

En Branson, el hospital de Mahoney ha reforzado su personal de seguridad, ha montado cámaras alrededor de la instalación, ha traído perros (“la gente realmente no quiere golpearte cuando hay un pastor alemán en la entrada”) y ha llevado a cabo un entrenamiento de desescalamiento, además a los botones de pánico.

Algunos de esos esfuerzos son anteriores a la pandemia, pero la crisis de covid ha agregado urgencia en una industria que ya lucha por contratar empleados y mantener niveles adecuados de personal. “La pregunta número uno que nos empezaron a hacer es: ‘¿Me vas a mantener a salvo?’”, dijo Mahoney.

Si bien varios estados, incluido California, tienen reglas para abordar la violencia en los hospitales, National Nurses United está pidiendo que el Senado nacional apruebe la Ley de Prevención de la Violencia en el Lugar de Trabajo para los Trabajadores de Servicios Sociales y de Salud que requeriría que los hospitales adopten planes para prevenir la violencia.

“Con cualquier estándar, al final del día es necesario que se cumpla”, dijo la higienista industrial del sindicato, Rocelyn de Leon-Minch.

Las enfermeras en los estados con leyes vigentes aún enfrentan violencia, pero tienen un estándar al que pueden señalar cuando piden que se aborde esa violencia. De Leon-Minch dijo que el proyecto de ley federal, que fue aprobado por la Cámara en abril, tiene como objetivo extender esa protección a los trabajadores de la salud en todo el país.

Destiny, la enfermera que testificó en Georgia usando solo su nombre de pila, está presentando cargos contra la paciente que la atacó. El comité del Senado estatal ahora está considerando la legislación para el próximo año.

Kamara dijo que la violencia reciente ayudó a que su hospital brindara capacitación para reducirla, aunque no estuvo satisfecha con eso. La vocera del Hospital San Leandro, Victoria Balladares, dijo que el hospital no experimentó un aumento en la violencia en el lugar de trabajo durante la pandemia.

Para los trabajadores de la salud como Kamara, todo este antagonismo está muy lejos de los primeros días de la pandemia, cuando los trabajadores de los hospitales eran aclamados como héroes.

“No quiero ser una heroína”, dijo Kamara. “Quiero ser mamá y enfermera. Quiero que me consideren una persona que eligió una carrera que ama, y merece ir a trabajar y hacerlo en paz. Y no sentir que va a resultar lastimada”.

Centros de órganos a pacientes de trasplantes: vacúnense contra covid o bajarán en la lista de espera

Un candidato a trasplante de riñón de Colorado que fue puesto en estado inactivo por no vacunarse contra covid-19 se ha convertido en el ejemplo más público de un debate que afecta a los más de 250 centros de trasplante de órganos alrededor del país. (El estado inactivo es cuando la persona ya fue aceptada y evaluada para un transplante pero no puede recibirlo por alguna razón)

En todo el país, un número creciente de programas de trasplantes ha optado por excluir a los pacientes que se niegan a recibir las ampliamente disponibles vacunas contra covid, o darles una prioridad menor en las abarrotadas listas de espera de órganos. Sin embargo, otros dicen que por ahora no implementarán estas restricciones.

En el centro del debate: si los pacientes de trasplantes que rechazan las vacunas no solo se ponen ellos mismos en mayor riesgo de sufrir una enfermedad grave y la muerte por una infección por covid, sino también desperdician órganos escasos que podrían beneficiar a otros.

El argumento semeja a las demandas de que los fumadores dejen de fumar seis meses antes de recibir un trasplante de pulmón o que los adictos se abstengan de consumir alcohol y drogas antes de recibir nuevos hígados.

“Es un debate en curso”, dijo el doctor Deepali Kumar, experto en enfermedades infecciosas y trasplantes de la Universidad de Toronto y presidente electo de la Sociedad Estadounidense de Trasplantes. “Es realmente una decisión individual del programa. En muchos programas, está cambiando”.

Leilani Lutali, de 56 años, una paciente con enfermedad renal en etapa avanzada de Colorado Springs, Colorado, se enteró en una carta del 28 de septiembre de UCHealth en Denver que si no comenzaba con la serie de vacunas contra covid en 30 días, perdería su lugar en la lista de espera de trasplantes. Tanto ella como su donante vivo, Jaimee Fougner, de 45 años, de Peyton, Colorado, se negaron a vacunarse, citando objeciones religiosas e incertidumbre sobre la seguridad y eficacia de las vacunas.

“Tengo demasiadas preguntas sin respuesta en este momento. Siento que me están obligando a no poder esperar y ver, y a vacunarme si quiero este trasplante que salvará mi vida”, dijo Lutali.

Agregó que ofreció a hacerse la prueba de covid antes de la cirugía o firmar una exención que absolviera al hospital del riesgo legal por su negativa a la vacuna. “¿En qué momento ya no eres partícipe de las decisiones sobre tu propia atención?”, se preguntó Lutali.

La paciente renal Leilani Lutali (izq.) de Colorado Springs, Colorado, pasó a tener un estatus inactivo en una lista de espera de trasplante de riñón en UCHealth en Denver por negarse a vacunarse contra covid-19. Lutali y su donante vivo, Jaimee Fougner, de Peyton, Colorado, están pidiendo a centros de trasplantes de Texas que consideren realizar las operaciones.(Jaimee Fougner)

Lutali ahora espera buscar un trasplante en Texas, donde varios hospitales, incluidos Houston Methodist y Baylor University Medical Center, en Dallas, dijeron que no requieren vacunas contra covid para aprobar a candidatos activos en la lista de espera nacional.

La diferencia entre las normas en Denver y Dallas, y en otros lugares, remarca una tensa división nacional. A fines de abril, menos del 7% de los programas de trasplantes en todo el país informaron que iban a cambiar el estatus de pacientes que no estaban vacunados contra covid, según una investigación de la doctora Krista Lentine, nefróloga de la Escuela de Medicina de la Universidad de Saint Louis.

Pero eso fue solo una instantánea a fines de la primavera y, como todas las prácticas relacionadas con covid, está “cambiando rápidamente”, agregó Lentine.

UCHealth en Denver comenzó a requerir vacunas contra covid para pacientes de transplantes a fines de agosto, citando la recomendación de ese mismo mes de la Sociedad Estadounidense de Trasplantes de que “todos los receptores de trasplantes de órganos sólidos deberían estar vacunados contra el SARS-CoV-2”.

Los pacientes que se someten a un trasplante tienen su sistema inmunológico artificialmente suprimido durante la recuperación, para evitar que sus cuerpos rechacen el nuevo órgano. Eso deja a los pacientes no vacunados en “riesgo extremo” de enfermedad grave por covid si se infectan, con tasas de mortalidad estimadas en 20% a 30%, según el estudio, dijo Dan Weaver, vocero de UCHealth.

Por la misma razón, los pacientes trasplantados que reciben vacunas contra covid después de la cirugía pueden no desarrollar una respuesta inmune fuerte, muestra una investigación.

UW Medicine en Seattle comenzó a exigir vacunas contra covid este verano, dijo el doctor Ajit Limaye, director del programa de enfermedades infecciosas de trasplante de órganos sólidos. Los pacientes ya debían cumplir con otros criterios estrictos para ser considerados para un trasplante, incluido recibir vacunas contra varias enfermedades, como la hepatitis B y la influenza.

“Básicamente, la estamos requiriendo para cualquiera que no tenga una contraindicación médica”, dijo. “Hay una idea fuerte para convertirlo en un requisito, como todos los demás”.

Por el contrario, Northwestern Medicine en Chicago, donde los médicos realizaron el primer trasplante doble de pulmón en un paciente con covid en junio de 2020, está alentando la vacunación contra la enfermedad pandémica, pero no es un requisito.

“No rechazamos la atención del trasplante en base al estatus de vacunación”, dijo Jenny Nowatzke, gerenta de relaciones con los medios nacionales de Northwestern. “El paciente tampoco obtiene puntuaciones más bajas”.

La falta de una norma única para todos los programas envía un mensaje contradictorio al público, opinó el doctor Kapilkumar Patel, director del programa de trasplante de pulmón en el Hospital General de Tampa, en Florida, donde no se requieren las vacunas.

“Exigimos vacunas contra la hepatitis y la influenza, y nadie tiene problemas con eso”, dijo. “Y ahora tenemos esta vacuna que puede salvar vidas y tener un impacto en la fase de recuperación posterior al trasplante. Y tenemos este gran alboroto del público”.

Casi 107,000 candidatos esperan órganos en los Estados Unidos; decenas mueren cada día durante la espera. Los centros de trasplantes evalúan qué pacientes pueden ser incluidos en la lista nacional, teniendo en cuenta los criterios médicos, y otros factores como los medios económicos y el apoyo social para garantizar que los órganos de donantes no fallen.

“Realmente hacemos todo tipo de juicios de valor selectivos”, dijo el doctor David Weill, ex director del programa de trasplante de pulmón y corazón-pulmón del Centro Médico de la Universidad de Stanford que ahora trabaja como consultor. “Cuando el comité selecciona, escucho los juicios más subjetivos, basados ​​en valores sobre la vida de las personas. Esto es solo una cosa más”.

Los centros pueden optar por colocar a los candidatos en estado inactivo por una variedad de razones, incluido el incumplimiento médico, según datos de United Network for Organ Sharing (UNOS), que supervisa los trasplantes. Al 30 de septiembre, esa categoría contaba con 738 de los más de 47,000 solicitantes que esperaban en estado inactivo, aunque no está claro cuántos están vinculados al estatus de vacunación.

Una pregunta particularmente espinosa involucra a personas no vacunadas que necesitan trasplantes específicamente porque las infecciones por covid destruyeron sus órganos. A fines de septiembre, más de 200 pulmones, así como al menos seis corazones y dos combinaciones de corazón y pulmón, habían sido trasplantados por razones relacionadas con covid, según datos de UNOS.

Muchos de esos órganos fueron trasplantados al comienzo de la pandemia, antes de que cualquier vacuna estuviera disponible. Ese ya no es el caso, dijo Weill. “Si recién te acabas de vacunarte, en realidad lo has hecho a punta de pistola”, dijo. “No es solo una elección personal; están mostrando su punto de vista”.

Estos pacientes suelen ser más jóvenes y más sanos que otros candidatos a trasplantes, más allá del daño relacionado con covid, y a menudo están lo suficientemente enfermos como para llegar a lo más alto de cualquier lista de trasplantes. “El paciente enfermo con covid podría estar adelante del paciente estable con fibrosis quística”, dijo Weill.

Patel, de Tampa, dijo que realizó un trasplante de pulmón a un paciente que fue trasladado a Florida después de ser excluido de la lista en otro centro porque no estaba vacunado contra covid. “Básicamente le ordené con un apretón de manos que recibiera su vacuna después del trasplante”, dijo Patel. “¿Pero su familia? No han estado de acuerdo”.

Patel piensa que, con el tiempo, todos los programas de trasplantes exigirán la vacunación contra covid, en gran parte porque los centros se evalúan en función de la supervivencia a largo plazo de sus pacientes.

“Creo que se extenderá en todo el país”, dijo. “Si comienzas a perder pacientes en un año por covid, será obligatorio más temprano que tarde.

‘Are You Going to Keep Me Safe?’ Hospital Workers Sound Alarm on Rising Violence

The San Leandro Hospital emergency department, where nurse Mawata Kamara works, went into lockdown recently when a visitor, agitated about being barred from seeing a patient due to covid-19 restrictions, threatened to bring a gun to the California facility.

It wasn’t the first time the department faced a gun threat during the pandemic. Earlier in the year, a psychiatric patient well known at the department became increasingly violent, spewing racial slurs, spitting toward staffers and lobbing punches before eventually threatening to shoot Kamara in the face.

“Violence has always been a problem,” Kamara said. “This pandemic really just added a magnifying glass.”

In the earliest days of the pandemic, nightly celebrations lauded the bravery of front-line health care workers. Eighteen months later, those same workers say they are experiencing an alarming rise in violence in their workplaces.

A nurse testified before a Georgia Senate study committee in September that she was attacked by a patient so severely last spring she landed in the ER of her own hospital.

At Research Medical Center in Kansas City, Missouri, security was called to the covid unit, said nurse Jenn Caldwell, when a visitor aggressively yelled at the nursing staff about the condition of his wife, who was a patient.

In Missouri, a tripling of physical assaults against nurses prompted Cox Medical Center Branson to issue panic buttons that can be worn on employees’ identification badges.

Hospital executives were already attuned to workplace violence before the pandemic struck. But stresses from covid have exacerbated the problem, they say, prompting increased security, de-escalation training and pleas for civility. And while many hospitals work to address the issue on their own, nurses and other workers are pushing federal legislation to create enforceable standards nationwide.

Paul Sarnese, an executive at Virtua Health in New Jersey and president of the International Association for Healthcare Security and Safety, said many studies show health care workers are much more likely to be victims of aggravated assault than workers in any other industry.

Federal data shows health care workers faced 73% of all nonfatal injuries from workplace violence in the U.S. in 2018. It’s too early to have comprehensive stats from the pandemic.

Even so, Michelle Wallace, chief nursing officer at Grady Health System in Georgia, said the violence is likely even higher because many victims of patient assaults don’t report them.

“We say, ‘This is part of our job,’” said Wallace, who advocates for more reporting.

Caldwell said she had been a nurse for less than three months the first time she was assaulted at work — a patient spit at her. In the four years since, she estimated, she hasn’t gone more than three months without being verbally or physically assaulted.

“I wouldn’t say that it’s expected, but it is accepted,” Caldwell said. “We have a lot of people with mental health issues that come through our doors.”

Jackie Gatz, vice president of safety and preparedness for the Missouri Hospital Association, said a lack of behavioral health resources can spur violence as patients seek treatment for mental health issues and substance use disorders in ERs. Life can also spill inside to the hospital, with violent episodes that began outside continuing inside or the presence of law enforcement officers escalating tensions.

A February 2021 report from National Nurses United — a union in which both Kamara and Caldwell are representatives — offers another possible factor: staffing levels that don’t allow workers sufficient time to recognize and de-escalate possibly volatile situations.

Covid unit nurses also have shouldered extra responsibilities during the pandemic. Duties such as feeding patients, drawing blood and cleaning rooms would typically be conducted by other hospital staffers, but nurses have pitched in on those jobs to minimize the number of workers visiting the negative-pressure rooms where covid patients are treated. While the workload has increased, the number of patients each nurse oversees is unchanged, leaving little time to hear the concerns of visitors scared for the well-being of their loved ones — like the man who aggressively yelled at the nurses in Caldwell’s unit.

In September, 31% of hospital nurses surveyed by that union said they had faced workplace violence, up from 22% in March.

Dr. Bryce Gartland, hospital group president of Atlanta-based Emory Healthcare, said violence has escalated as the pandemic has worn on, particularly during the latest wave of infections, hospitalization and deaths.

“Front-line health care workers and first responders have been on the battlefield for 18 months,” Garland said. “They’re exhausted.”

Like the increase in violence on airplanes, at sports arenas and school board meetings, the rising tensions inside hospitals could be a reflection of the mounting tensions outside them.

William Mahoney, president of Cox Medical Center Branson, said national political anger is acted out locally, especially when staffers ask people who come into the hospital to put on a mask.

Caldwell, the nurse in Kansas City, said the physical nature of covid infections can contribute to an increase in violence. Patients in the covid unit often have dangerously low oxygen levels.

“People have different political views — they’re either CNN or Fox News — and they start yelling at you, screaming at you,” Mahoney said.

“I don’t want to be a hero,” says Mawata Kamara, a nurse at San Leandro Hospital in San Leandro, California. “I want to be a mom and a nurse. I want to be considered a person who chose a career that they love, and they deserve to go to work and do it in peace. And not feel like they’re going to get harmed.” (Shelby Knowles for KHN)

“When that happens, they become confused and also extremely combative,” Caldwell said.

Sarnese said the pandemic has given hospitals an opportunity to revisit their safety protocols. Limiting entry points to enable covid screening, for example, allows hospitals to funnel visitors past security cameras.

Research Medical Center recently hired additional security officers and provided de-escalation training to supplement its video surveillance, spokesperson Christine Hamele said.

In Branson, Mahoney’s hospital has bolstered its security staff, mounted cameras around the facility, brought in dogs (“people don’t really want to swing at you when there’s a German shepherd sitting there”) and conducted de-escalation training — in addition to the panic buttons.

Some of those efforts pre-date the pandemic but the covid crisis has added urgency in an industry already struggling to recruit employees and maintain adequate staffing levels. “The No. 1 question we started getting asked is, ‘Are you going to keep me safe?’” Mahoney said.

While several states, including California, have rules to address violence in hospitals, National Nurses United is calling for the U.S. Senate to pass the Workplace Violence Prevention for Health Care and Social Service Workers Act that would require hospitals to adopt plans to prevent violence.

“With any standard, at the end of the day you need that to be enforced,” said the union’s industrial hygienist, Rocelyn de Leon-Minch.

Nurses in states with laws on the books still face violence, but they have an enforceable standard they can point to when asking for that violence to be addressed. De Leon-Minch said the federal bill, which passed the House in April, aims to extend that protection to health care workers nationwide.

Destiny, the nurse who testified in Georgia using only her first name, is pressing charges against the patient who attacked her. The state Senate committee is now eyeing legislation for next year.

Kamara said the recent violence helped lead her hospital to provide de-escalation training, although she was dissatisfied with it. San Leandro Hospital spokesperson Victoria Balladares said the hospital had not experienced an increase in workplace violence during the pandemic.

For health care workers such as Kamara, all this antagonism toward them is a far cry from the early days of the pandemic when hospital workers were widely hailed as heroes.

“I don’t want to be a hero,” Kamara said. “I want to be a mom and a nurse. I want to be considered a person who chose a career that they love, and they deserve to go to work and do it in peace. And not feel like they’re going to get harmed.”

Bye-Bye to Health Insurance ‘Birthday Rule’? Kansas Lawmaker Floats Fix

When Kayla Kjelshus gave birth to her first child, the infant spent seven days in the neonatal intensive care unit, known as the NICU. This stressful medical experience was followed by an equally stressful financial one. Because of an obscure health insurance policy called the “birthday rule,” Kjelshus and her husband, Mikkel, were hit with an unexpected charge of more than $200,000 for the NICU stay.

Now, seven months after KHN and NPR published a story about the Kjelshus family’s experience, new parents may be spared this kind of financial uncertainty if lawmakers pass a bill that would give parents more control when it’s time to pick a health insurance policy for their child.

The new proposed law would eliminate the birthday rule. That rule dictates how insurance companies pick the primary insurer for a child when both parents have coverage: The parent whose birthday comes first in the calendar year covers the new baby with their plan first. For the Kjelshuses of Olathe, Kansas, that meant the insurance held by Mikkel, whose birthday is two weeks before his wife’s, was primary, even though his policy was much less generous and based in a different state.

“It’s an outdated policy,” Mikkel Kjelshus said. “Nowadays both parents typically have to work just to make ends meet.” Two jobs often means two offers of health insurance — and while double coverage should be a good thing, in practice, it can lead to a bureaucratic nightmare like the one the Kjelshuses faced.

U.S. Rep. Sharice Davids (D-Kansas) introduced “Empowering Parents’ Healthcare Choices Act,” a bill that would do away with “the birthday rule” and a “coordination of benefits policy” that trips up first-time parents up when it’s time to sign up a new baby for insurance.

“When I heard about the Kjelshus family’s story, I knew there had to be a way to help,” Davids said. “Parents should have the power when it comes to their new baby’s health care coverage.”

For Charlie Kjelshus, the birthday rule meant her dad’s plan — with a $12,000 deductible, a high coinsurance obligation and a network focused in a different state — was deemed her primary coverage. Her mom’s more generous plan was secondary. Confusion over the two plans caused a tangle of red tape for the family that took almost two years and national media attention to resolve.

This model regulation was set by the National Association of Insurance Commissioners and adopted by most states, including Kansas, said Lee Modesitt, director of public affairs with the Kansas Insurance Department. It is a somewhat arbitrary rule that could be fair if all jobs offered health plans with similar coverage. But for many families, one partner’s plan is much more generous.

“It feels awesome,” Mikkel Kjelshus said of the news that a change has been proposed. “We really didn’t want this to happen to anyone else.”

To be enacted, the bill would need to pass the House and Senate before receiving the president’s signature. Davids was elected to Congress in 2018, flipping a seat in Overland Park, Kansas, that had been held by a Republican for a decade. She was reelected in 2020 and is the only Democrat in Kansas’ House delegation.

Ellie Turner, a spokesperson for the congresswoman, said Davids is talking with colleagues in the House to garner additional support.

“It’s becoming clear that the Kjelshus family is not alone in this experience,” Turner wrote in an email. “We are going to continue working to raise awareness and gain momentum for a birthday rule fix, because every family deserves a choice when it comes to their child’s health.”

As they await the arrival of their second child, this time around the Kjelshus family has a better idea of how the health insurance will work. And, much like the first time, they feel prepared.

“We’ve got the crib. We’ve got the baby stuff. It’s a lot less stress this time around,” Mikkel Kjelshus said. “We kind of know what we’re doing.”

Bill of the Month is a crowdsourced investigation by Kaiser Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

‘I Need to Know I Tried’

Time-limited trials offer I.C.U. patients and their families a sense of empowerment in the face of low odds.

In 2019, Dr. Richard Leiter, a palliative care specialist, met a patient and the man’s wife in the intensive care unit at Brigham and Women’s Hospital in Boston. The patient, in his 70s, had heart disease and kidney problems. But he had been living at home and doing reasonably well until sepsis, a life-threatening bloodstream infection, sent him to an emergency room.

He had already spent several days on a ventilator, requiring drugs to keep his blood pressure from plummeting. Now, “his kidneys were no longer working and he wasn’t waking up at all,” Dr. Leiter recalled, adding, “We were very worried that he wasn’t going to survive.”

When the kidney palliative care team — including a nurse-practitioner and a social worker, as well as a consulting nephrologist — met with the man’s wife to discuss treatment, it proposed what is known as a time-limited trial, in which life-sustaining treatment continues for an agreed-on period to see how the patient responds.

Dr. Leiter explained that the team could try continuous dialysis, which might do what the man’s kidneys no longer could: clear toxins and fluid from his body so that he could regain consciousness. But “we weren’t sure dialysis would help,” Dr. Leiter recalled telling her. The team was not optimistic.

Moreover, continuous dialysis involves implanting a large catheter in the neck — an invasive procedure, in addition to the uncomfortable measures the patient was already enduring. His wife reported that he valued his independence and mental awareness. If the man were dying, dialysis might simply prolong his suffering; if he survived, he might be severely impaired.

She understood the risks, Dr. Leiter recalled: “She said, ‘I share your worry, but I need to know I tried.’”

She agreed to round-the-clock dialysis for three days. If her husband’s blood pressure stabilized and he awakened, the team would continue treatment.

But if he remained unconscious, Dr. Leiter explained to the wife, that indicated her husband probably was unlikely to awaken. In that case, the team would keep the patient comfortable as it weaned him off life-sustaining devices and drugs.

Although there is scant data on how commonly critical care doctors suggest a time-limited trial, “it is gaining traction as a way to engage with patients and families in I.C.U.s,” said Dr. Douglas White, who directs the Program on Ethics and Decision Making in Critical Illness at the University of Pittsburgh School of Medicine.

The approach may get a boost from a study undertaken at three large hospitals in Los Angeles and recently published in JAMA Internal Medicine.

The researchers trained I.C.U. staff members, including some 50 doctors, to use time-limited trials when they met with family members who made decisions for patients who were too ill to direct their own care.

“The typical situation is, the medical team is pessimistic,” said Dr. James A. Tulsky, a palliative care doctor at Dana Farber Cancer Institute in Boston and co-author of an editorial accompanying the study.

“The patients are very ill, and the team worries that the odds of survival, with any kind of quality of life acceptable to the patient, are very low,” he said. “Yet the family is holding out hope that something will change. There can be a lot of conflict around this.”

A time-limited trial — whether or not the I.C.U. staff uses that precise term — incorporates several key elements. The medical team asks family members about what matters to the patient, including what medical efforts he or she would accept or decline.

If the clinicians propose a treatment, like a ventilator to help a patient breathe or a device to support a faltering heart, they explain not only the possible benefits but also the downsides.

“These interventions are potentially painful, they lack dignity, they’re tremendously burdensome,” Dr. Tulsky said. Often, I.C.U. patients must be sedated to keep them from trying to pull out uncomfortable breathing tubes and catheters.

The team and the family agree to a specific amount of time to try the treatment; that could be 24 to 48 hours or a few days, depending on the therapy and the patient’s condition.

The staff then maps out the particular markers that would show whether the patient is improving. Perhaps she will be able to breathe with less ventilator support, or receive encouraging blood test results, or regain consciousness. Then, she may be able to leave the I.C.U. for standard hospital care.

“We want to be able to say we’ve given it enough time to see how they’re going to do,” said Dr. Dong Chang, a critical care specialist at Harbor-U.C.L.A. Medical Center and lead author of the study.

“The one thing we don’t want is to carry on indefinitely,” he said. When patients don’t meet the specified goals, he added, “that is often a sign that they won’t get better — they’ll pass away or wind up in a state they would not want.” In that case, the family may opt for less aggressive treatment or comfort care.

The Los Angeles study, involving about 200 I.C.U. patients with an average age of 64, demonstrated how much difference this approach can make. Half the participants were treated before the hospitals adopted time-limited trials; the researchers compared their outcomes with those of patients treated after such trials became standard practice.

At first, formal family meetings to weigh decisions took place for 60 percent of patients. After the hospitals introduced time-limited trials, nearly 96 percent of families had formal meetings — and they happened much earlier, a day after the patient’s admission, instead of five days. The sessions were far more likely to include discussions of the patient’s values and preferences and of treatment risks and benefits.

The average length of stay decreased by a day, a significant change. More important, the proportion of patients who lingered for weeks in the I.C.U. dropped sharply, perhaps because fewer received invasive treatments and more had do-not-resuscitate orders.

Yet the mortality rate was about the same — and high, at nearly 60 percent — for both groups. “It reassured us that we weren’t pushing family members into uncomfortable situations, pushing them to de-escalate treatments for someone who would have survived,” Dr. Chang said.

Treatment trials accord with what many patients tell their doctors, Dr. White said: “They say things like, ‘If you can get me through this quickly, by all means. But don’t keep me on machines long term.’”

Trials can also help families who are faced with crushing decisions, and who often suffer guilt and doubt after their loved ones’ stays in an I.C.U. “People are very human in the way they react to shocking bad news,” Dr. White said. “It can take time to come to terms with it.”

Treatment trials provide that time, and they offer a third option — a middle ground between authorizing every possible aggressive procedure or discontinuing life-sustaining measures.

For families, Dr. Chang said, “being involved in these conversations, seeing the treatment unfold before you, it can be empowering: ‘Now, I see what the doctors are seeing. I understand why they think it’s not going well.’”

In an I.C.U. where no one suggests such a strategy, family members themselves can ask: Can we do a time-limited trial, if there’s something you think might help? “The staff would understand what that means, and I think they’d respond positively,” Dr. Leiter said.

His patient at Brigham and Women’s Hospital, even with continuous dialysis, never awakened, Dr. Leiter recalled: “When three days were up, his wife said: ‘Enough. Let’s do what we can to allow him to die peacefully.’”

She and their children assembled as the team provided pain medication and withdrew the tubes and machinery. As they kept their vigil, the man died in a matter of hours.

Operating Rooms Go Under the Knife

Hospitals are bringing together surgeons, anesthesiologists and nurses with architects, engineers and administrative staff to rethink the modern operating room.

This article is part of our new series on the Future of Health Care, which examines changes in the medical field.

If you ask Dr. Scott T. Reeves, operating rooms resemble an airplane cockpit. There is sophisticated equipment, tight spaces, blinking lights and a cacophony of sound.

On top of that, “they’re often cluttered, people can trip, surgeons and nurses can stick themselves with needles, and side infections from dust and other contaminations are a growing problem,” said Dr. Reeves, chair of the department of anesthesia and perioperative medicine at the Medical University of South Carolina.

When he became involved with the design of the operating rooms at the R. Keith Summey Medical Pavilion, part of the children’s hospital of the university, Dr. Reeves focused on how to make surgical suites more accommodating for technology — including imaging machines and robots — as well as staff and patients.

Dr. Reeves’s actions are part of an increasing recognition that hospitals are “human centered,” said Anjali Joseph, the director of the Center for Health Facilities Design and Testing at Clemson University, who worked on the design for the ambulatory center that opened in 2019. “We cannot think of patient safety without thinking about the health of everyone in the room. They are interlinked.”

Their goal: to rethink the layout as well as plan for the future, and the South Carolina team is not alone. The problem of squeezing people and a variety of machines — not to mention robots — into surgical suites designed decades ago is forcing a change.

A full-scale simulated pediatric operating room at the Medical University of South Carolina allowed staff members to evaluate what would work best.
A full-scale simulated pediatric operating room at the Medical University of South Carolina allowed staff members to evaluate what would work best.Sarah Pack/MUSC

From increasing in size to reorienting the layout, hospitals — especially those that are part of large university medical centers — are bringing together surgeons, anesthesiologists and nurses with architects, engineers and administrative staff to rethink the modern operating room. But even older community hospitals, with more limited budgets, are getting creative, since surgeries are an all-important source of revenue.

While new construction is more straightforward than retrofitting an older building, not every hospital has the financing or the space to begin anew. Building a new operating room alone can cost from $1 million to $3 million per surgical suite, Dr. Reeves said. The cost of a new hospital can exceed $1 billion.

Configuring new surgical suites in existing buildings requires creativity, said Joan Saba, a health care architect and partner with NBBJ, an architecture and design firm.

For example, older operating rooms may have ceiling heights as low as 10 feet, while 12-16 feet is now considered optimum, to house electronics, cables and ductwork, she said. Some have captured space from the floor above to gain the extra height. Where that is not an option, some hospitals have repurposed adjoining rooms to house electronics and other infrastructure.

New equipment and new surgical techniques are largely driving the redesigns. Those designing operating rooms even 20 years ago could not have foreseen the explosion in technology, which often requires more space.

“Imaging management” is the biggest challenge that operating rooms have, said Mary Hawn, the chair of the department of surgery at Stanford University, which opened a new hospital in November 2019 (Stanford’s new children’s hospital opened in 2017). “Twenty years ago we would operate on exactly what we were looking at, possibly magnifying it with loupes,” the specialized glasses that augment a surgeon’s vision. Now, monitors provide high definition to guide the surgeon.

In addition, for very complicated surgeries, hospitals hope to have equipment like CT scans and other imaging machines in the operating room. This not only saves time but lessens the risk of infection.

“Patients need not be closed up, taken out for imaging, see that you missed something and then bring them back to the operating room and open them up again,” Ms. Saba said.

Of all the imaging equipment, the only one generally unsuitable for the operating room is that needed for magnetic resonance imaging — commonly known as an M.R.I. — because of its size. As a result, Ms. Saba said, some hospitals essentially are stationing them adjacent to an operating room in case an M.R.I. is needed. A separate space has an added efficiency benefit, because the equipment can be used for nonsurgical patients as well.

Ceilings are not overlooked. Freeing up valuable floor space, monitors are often affixed to ceiling-mounted booms, which can have several arms and may also serve as a conduit for gases needed for anesthesia. Ultraviolet cleaning systems, which eliminate bacteria and viruses, can be anchored in the ceilings, to assist with disinfection. And the space above the ceiling is often larger to house a range of cables and other electronic equipment, in addition to ductwork with sophisticated air filtration systems.

Access to the space above the ceiling, as well as behind the walls, has become important, so that any technical problems can be investigated and remedied within hours, rather than shutting a room down for lengthy repairs. Some hospitals, for example, are now considering stainless steel prefabricated wall systems for their surgical suites because they are both easier to clean and easier to take out if the electronics hidden behind break, Ms. Saba said.

Other important factors are lighting and noise. When it comes to increasingly common laparoscopic surgery, monitors that guide surgeons are lit but overhead lights may be turned off to reduce glare, Dr. Hawn said.

That “can be somewhat dangerous because it can be quite dark and people run into things or trip over things,” she added. “We now have green lighting, which allows us to be able to see a sharp image on the monitors without the glare that you get from the white light.”

Noise is distracting at best, but with physical repercussions, like hypertension, especially for staff exposed for long periods. High decibel levels are “associated with increased difficulty in communication, which is the largest source of preventable errors in the hospital environment,” John Medina, an affiliate associate professor at the University of Washington department of bioengineering, said in an email.

At the Loma Linda University Medical Center in California, which is expected to open a new hospital on its campus this year, the operating room walls are built to mitigate outside noise as well as vibrations, and air duct silencers are being used as well, said Allison Ong, the head of campus transformation.

A renovated operating room at the R. Keith Summey Medical Pavilion gives staff the option to move equipment, lights and monitors around the operating table during surgeries.Sarah Pack/MUSC

Hospital construction — whether for new buildings or even renovated pre-existing spaces, takes years, from inception to opening and can cost hundreds of millions of dollars. Before the spaces are put into use, all the staff — from the surgeons to the orderlies — need to practice in the new configuration. Dress rehearsals are common, in spaces like warehouses or even parking lots that are mocked up with cardboard walls to resemble the finished surgical suite.

A run-through can be elaborate, bringing together surgeons, anesthesiologists and nurses. Several days of full hospital rehearsals, for example, are in the works at the Loma Linda center. The planning for the 500 or more people who will attend each day has itself taken months, Ms. Ong said.

Evaluating the finished space before the first patient arrives can also help the medical staff make important choices. The Medical University of South Carolina, was considering a specialized piece of imaging equipment for its children’s hospital that would have permitted a fluoroscopy during surgery, Dr. Reeves said. But the machine had a big footprint, so a group taped it out on the floor.

“What we realized by doing that was that it greatly decreased the functionality of the room for routine cardiac surgical patients,” he said. “It was great for the 10-15 patients a year we would potentially need it for, but it substantially became a burden for everyone else.” The hospital decided against installing the equipment in the operating room itself.

Over all, perhaps the biggest question in these renovations is how to “future proof” the operating rooms, in addition to the overall hospital. It is a particularly challenging exercise with technology changing so rapidly.

At Loma Linda, Ms. Ong said, “We had to decide very early on what the future of health care was going to look like. How many I.C.U. beds, how many medical surgical beds and how many O.R’s. You make your best guess.”

Part of that is adopting a more modular approach, to allow flexibility for new equipment.

As Dr. Reeves said: “The takeaway from Covid is how rigid many operating rooms are. I think you’ll see a lot of architecture firms be more nimble in their designs. And while that comes with an increased cost, it’s a question of either pay me now or pay me later.”

A Lawsuit Over Frozen Embryos

When the first letter from Women & Infants Hospital arrived in the mail in July 2017, Elaine Meyer thought perhaps it was a fund-raising solicitation or clerical error. The letter, which included a billing invoice, addressed her as “Dear Patient,” but she had not been a patient at the hospital for nearly two decades. That’s when she and her husband, Barry Prizant, had completed their infertility treatment there.

After three miscarriages, they had gone through several rounds of IVF at Women & Infants in Providence, R.I., near their home in Cranston, resulting in the creation of at least 18 test-tube embryos. One of those had become their son, Noah, born in December of 1996, and along with joy there had been a lot of mourning and reckoning with the reality that this would be the sole realization of their efforts.

Dr. Meyer mentioned the letter to her husband and stashed it in a filing cabinet of her home office.

But then another came the next month. “If you would like WIH to continue to store your embryos/oocytes,” the letter said, “please return a copy of this letter, signed and notarized, along with a check in the amount of $500.”

Dr. Meyer, a longtime psychologist at Boston Children’s Hospital and associate professor of psychology at Harvard Medical School, read it with confusion and a growing sense of alarm. Without the payment, the hospital would consider embryos “legally abandoned” and may discard them.

“I thought, ‘This can’t be right,’” she said. “We know we went back for all of our embryos.”

Those frozen embryos, still in the hospital’s possession, are now at the center of a lawsuit that Dr. Meyer and Dr. Prizant have filed in Rhode Island’s Superior Court, alleging breach of contract, negligence, bailment and intentional infliction of emotional distress — all of which Women & Infants denies in its response.

In a statement, a spokeswoman there declined to comment on the case, citing patient confidentiality and federal privacy laws.

“We were always coming back for our embryos”: Dr. Meyer and Dr. Prizant.
“We were always coming back for our embryos”: Dr. Meyer and Dr. Prizant.Maddie Malhotra for The New York Times

When the letters arrived, Dr. Meyer and Dr. Prizant, a speech and language pathologist and visiting scholar at Brown University, were then fulfilled empty nesters. Noah was in college, a successful student and happy young man that Dr. Meyer, now 63, calls “the light of our lives.”

She was ensconced in her work educating students and health care professionals how to have difficult conversations with patients, upholding what she calls an “emotional standard of care.”

Dr. Prizant, 69, who specializes in children and adults on the autism spectrum, was training other practitioners and churning out papers and podcasts. He is the author of “Uniquely Human,” a book written with Tom Fields-Meyer. He plays drums in a band and is proud of his roots in the stickball streets of Brooklyn. “Basically, I don’t like to take crap,” he said.

He and his wife, a former 4H club member raised in a large working-class family in small-town Connecticut, met in 1985 while attending a conference at a psychiatric hospital. Married two years later, they wanted children but felt it was important for her to finish graduate school first. Dr. Meyer got pregnant at 34, then had a miscarriage. Two more miscarriages followed.

The couple first sought treatment from Dr. Gary Frishman at Women & Infants, which is affiliated with Brown’s medical school, in 1995. Dr. Prizant gave his wife daily shots before her eggs were harvested at the clinic and mixed in a petri dish with his sperm to create embryos, some of which were then implanted in Dr. Meyer’s uterus. The first two cycles didn’t work.

“It takes something that is supposed to be so private and so intimate and so tender and makes it a whole different affair,” Dr. Meyer said, recalling the experience. “You’re vulnerable and you’re completely dependent on other people. There are so many injections and appointments and disappointments, you put your trust in what the doctors tell you because you are desperate for the process to work.”

During a third cycle, Dr. Meyer became pregnant with Noah. After his birth, she and her husband were optimistic they could have another child. There were nine embryos left over from the three cycles, and they signed agreements with the hospital to “cryopreserve” them for implantation in the future.

A card made by the couple’s son, Noah.Maddie Malhotra for The New York Times

Dr. Meyer felt an acute attachment to the embryos, calling each “a spark of life.” She would drive out of her way to pass by the hospital, stopping in the parking lot to sing lullabies to them while in her car. “We were always coming back for our embryos,” she said. “That was always the plan.”

After Noah started preschool, the couple began anew at Women & Infants in August of 2000 with shots and doctor appointments. The hospital would thaw the nine embryos, and those that survived this process would be implanted in Dr. Meyer’s uterus, in the hopes that at least one would develop into a pregnancy.

The couple said they were told all the embryos were thawed; they believe three survived the thaw and were implanted. But weeks later, they were called in for “the failure conversation” — what Dr. Meyer called the meetings with doctors to discuss an unsuccessful procedure and possible next steps.

This one was with Dr. David Keefe, then the director of the hospital’s division of reproductive medicine. He advised Dr. Meyer that at 43, her and her husband’s most reasonable path to additional children was donor eggs or adoption.

Dr. Prizant was done, emotionally exhausted. “It sets you in a constant state of grief,” he said of infertility treatment.

Dr. Meyer, a devoted Quaker, needed a little more time and spiritual consultation, but also made peace, grateful for Noah. “We both decided,” Dr. Prizant said, “to look at having just one child as an opportunity to have more resources to serve many more children through our work.”

A Crack in the Glass

Reading the second letter, which like the first one asked for $500, filled Dr. Meyer with dread. She left a voice mail message at the hospital. Days later, she spoke to a person who turned out to be a clerk in the billing department.

“I am telling you, there are no embryos,” Dr. Meyer said, asking her to contact the lab itself.

For weeks, she waited for a call back. Nothing. She called the clerk again. “I’ve confirmed with the lab, there are two frozen embryos,” the clerk said.

Ms. Meyer was stunned, silent. Then she spoke. “Do you understand how serious this is?” she said.

A few days later, she was driving back from the family cottage in South Kingstown, when Dr. Ruben Alvero, then the director of the fertility center at Women & Infants, called to confirm. “We have two of your embryos,” he said.

She pulled her car to the side of the road.

The embryos, Dr. Alvero said, had been found in a glass vial at the bottom of the tank. The vial has a crack in it, he told her, which meant that the embryos had been exposed, possibly for a decade, to the nitrogen cooling agent. They most likely are not viable, he told her, and apologized.

Dr. Meyer told Dr. Alvero this was too much to take in from the side of the road. A meeting was arranged for December of that year, between Dr. Meyer, her husband, Dr. Alvero and Richard Hackett, who helped to create and manages the I.V.F. lab at Women & Infants. Dr. Frishman, who had been Dr. Meyer’s main doctor and is still on the staff at Women & Infants, did not attend.

The four gathered in a conference room, with Dr. Prizant and his wife on one side, Dr. Alvero and Mr. Hackett on the other.

According to the legal complaint, the men representing the hospital apologized for the circumstances that had brought them together and explained to the couple again what had happened. Two of Dr. Meyer and Dr. Prizant’s embryos had disappeared sometime before Dr. Meyer’s procedure in 2000, Dr. Meyer said they told her and her husband. The embryos were located in 2010 when the tank was emptied for cleaning or maintenance and re-entered into the inventory. The vial, as Dr. Alvero had told Dr. Meyer earlier in the fall, had been damaged. When the clinic implemented a new storage fee policy in 2017, the couple received the bills.

She asked if the cells of the embryo still physically existed. They did, the men told her. Though likely compromised, the embryos are still intact, in their glass vial with her name on it.

Dr. Meyer holds the lid of a petri dish containing embryos that were implanted in her in 2000.Maddie Malhotra for The New York Times

“Those are ours!” Dr. Meyer blurted out, and said that she didn’t want the embryos discarded. Dr. Alvero told her that the hospital would continue to store them and that he would waive the $500 fee. He and Mr. Hackett apologized and flipped through pages in her huge medical file, which the men had brought to the meeting. Mr. Hackett stopped on one page, she said, and began tapping his fingers on it: a handwritten note that said “2 missing.”

“You knew they were missing” and didn’t tell us, Dr. Meyer asked?

No one ever tried to find the embryos, or thought to alert us when they were found years later, Dr. Prizant asked?

Perhaps the couple forgot that they had been told that the embryos were missing, they said Dr. Alvero suggested.

Dr. Prizant and Dr. Meyer were sure no one had ever told them anything was missing. Why would they have discussed adoption and egg donation if they had known two embryos were lost in the hospital? “That would have set us on a different course of action,” he said.

Dr. Keefe, a professor of obstetrics and gynecology and a fertility specialist at New York University Langone Fertility Center, remembered his patients, and expressed surprise to learn of the two long-lost embryos. “Yikes,” he said. “I feel so terribly for this couple.”

Dr. Keefe said that he would have only known if embryos were missing if someone from the lab had notified him, and in this case they had not. In the rare instances when embryos are lost or misplaced, he added, the protocol is to notify the patient immediately, apologize and explain in detail what might have happened. “Transparency is the foundation of trust and the essential element of the doctor-patient relationship,” he said.

“These are not two cans of peaches on the shelf at a Stop & Shop,” he went on, speaking of the embryos. “They are much more like two kids on a playground. When you’re responsible for them and they’re lost, you notify the people who care about them the most and tell them all you can.”

Dr. Meyer, who has devoted a career to speaking up for patients and more recently to studying and writing about bioethics, scoffs at the idea that she would have quietly accepted the news in 2000 that her embryos had been lost. “There is no way on God’s green earth,” she said.

Dr. Alvero, now the director of reproductive endocrinology and infertility at the Lucile Packard Children’s Hospital at Stanford University and the president of the Society for Reproductive Endocrinology and Infertility, referred questions to the public relations department of Women & Infants. The hospital’s spokeswoman said Dr. Frishman and Mr. Hackett were not available for comment.

‘My Line in the Sand’

At the meeting in December 2017, Dr. Prizant and Dr. Meyer said, Dr. Alvero asked what might help them feel resolved about the situation.

The couple said they wanted to find something meaningful to come from the careless treatment of their embryos. Perhaps it could provide a learning opportunity, they suggested — proposing, among other ideas, that Dr. Meyer could help train fertility staff at the hospital to interact more compassionately with and informatively to patients in the thicket of family planning.

Dr. Meyer and Dr. Prizant on their wedding day.Maddie Malhotra for The New York Times

Dr. Alvero and Mr. Hackett said they would consult with the hospital administration and get back in touch after the holidays. But by May 2018, after five months of silence, Dr. Meyer and Dr. Prizant wrote a letter to Dr. Alvero, copying the hospital’s interim president and chief executive, the Rhode Island attorney general and the head of the state’s department of health.

“As parents who cherished children, we would NOT have forgotten that our embryos were missing,” they wrote. “We would not have rested until they were found and cared for.”

Soon after mailing the letter, they got a phone call from Katherine Wills, the hospital’s director of risk management. “‘This happened a long time ago,’” Dr. Meyer recalled Ms. Wills telling her. Ms. Meyer felt the message was, “Get over it.”

Dr. Meyer explained to Ms. Wills that embryos discovered in the bottom of the tank represented to her and her husband potential human beings: children, her and her husband’s children. “I was horrified,” Dr. Meyer said.

That conversation, she said, “was my line in the sand.” Hesitant at first, Dr. Meyer and her husband decided to take legal action. “As a woman who had suffered miscarriages and infertility, all the powerful feelings of sadness, shame and grief came crashing back and the knot in my stomach was real.”

They are seeking a jury trial and punitive, compensatory, consequential damages. But Dr. Meyer and Dr. Prizant said the real point of the lawsuit is to compel the hospital, and perhaps other infertility treatment providers, to commit to reliable and accountable storage management and patient care practices. (They want to urge vigilance on the increasing number of people freezing eggs and embryos.)

In a legal filing, the hospital alleged that Dr. Meyer and Dr. Prizant “were guilty of comparative negligence” but provided no further detail. Angela L. Carr, the hospital’s lawyer, declined to comment.

The couple at their cottage in South Kingstown.Maddie Malhotra for The New York Times

“I would not be true to myself if I let this be swept under the rug,” Dr. Meyer said. “It is our job as parents to give our children, and in this case embryos, every opportunity for life and for dignity. We were denied our right to fulfill our role as parents.”

‘You Assume There is Oversight’

Dr. Prizant and Dr. Meyer’s saga is “an interesting story not because it’s unique but because it’s probably not unique,” said Jeffrey Kahn, the director of the Berman Institute of Bioethics at Johns Hopkins University. (He does not know the couple and is not involved in their case.) “There is so little regulation and no accounting of how many embryos there are in storage,” he said.

The fertility industry is a lucrative business but operates largely unchecked by regulators, Dr. Kahn said, for several reasons, including federal policies in place since the mid-1980s. The policies bars federal dollars from being used for research that involves the harm or destruction of human embryos.

Federal regulation tends to follow federal funding, often leaving privately funded I.V.F. facilities without oversight. Also, most of what takes place in an I.V.F. laboratory falls outside the purview of the Food and Drug Administration. “You assume there is oversight, as there is with most doctors and procedures, but when it comes to infertility, that turns out not to be true,” he said.

A study published in 2020 in the journal Fertility & Sterility found that 133 lawsuits were filed in the previous decade over lost, discarded or damaged frozen embryos. That number reflects lawsuits filed, which is likely a fraction of actual occurrences, said Dov Fox, the director of the Center for Health Law Policy and Bioethics at University of San Diego and one of the study’s authors. Dr. Fox also noted that most of these types of suits settled out of court, with undisclosed terms and nondisclosure agreements, making it difficult to know the outcomes.

Three lawsuits have been filed against Women & Infants Hospital related to lost embryos, including two in the mid-1990s, when Ms. Meyer was a patient. In 2019, a woman named Marisa Cloutier-Bristol described receiving in 2017 a bill from Women & Infants similar to the ones that Dr. Meyer and Dr. Prizant received, which notified Ms. Cloutier-Bristol that the hospital had a frozen embryo belonging to her and her late husband, despite having been told in 2003 that her I.V.F. cycle had not produced any viable embryos.

“I felt like I was now grieving a child I didn’t even know existed, a child I could have had,” she told “Good Morning America” in 2019. She sued the hospital. (The case has since been dismissed. Through her lawyer, Ms. Cloutier-Bristol declined to comment.)

As Dr. Meyer and Dr. Prizant’s case winds its way through the pandemic-delayed civil courts system, the couple is also thinking about what to do with their embryos.

After seeking spiritual support and guidance at their temple and their Quaker meeting, the couple is leaning toward repossessing their embryos, and burying them in the backyard in Cranston, where her mother’s ashes, and the remains of the family dog, are buried. They also have talked to a rabbi about a cemetery burial.

“We need to allow our embryos to finally have some peace and rest,” Dr. Meyer said. “And we need to find some peace and rest ourselves.”

Music Therapy: Why Doctors Use it to Help Patients Cope

Music therapy is increasingly used to help patients cope with stress and promote healing.

“Focus on the sound of the instrument,” Andrew Rossetti, a licensed music therapist and researcher said as he strummed hypnotic chords on a Spanish-style classical guitar. “Close your eyes. Think of a place where you feel safe and comfortable.”

Music therapy was the last thing that Julia Justo, a graphic artist who immigrated to New York from Argentina, expected when she went to Mount Sinai Beth Israel Union Square Clinic for treatment for cancer in 2016. But it quickly calmed her fears about the radiation therapy she needed to go through, which was causing her severe anxiety.

“I felt the difference right away, I was much more relaxed,” she said.

Ms. Justo, who has been free of cancer for over four years, continued to visit the hospital every week before the onset of the pandemic to work with Mr. Rossetti, whose gentle guitar riffs and visualization exercises helped her deal with ongoing challenges, like getting a good night’s sleep. Nowadays they keep in touch mostly by email.

The healing power of music — lauded by philosophers from Aristotle and Pythagoras to Pete Seeger — is now being validated by medical research. It is used in targeted treatments for asthma, autism, depression and more, including brain disorders such as Parkinson’s disease, Alzheimer’s disease, epilepsy and stroke.

Live music has made its way into some surprising venues, including oncology waiting rooms to calm patients as they wait for radiation and chemotherapy. It also greets newborns in some neonatal intensive care units and comforts the dying in hospice.

While musical therapies are rarely stand-alone treatments, they are increasingly used as adjuncts to other forms of medical treatment. They help people cope with their stress and mobilize their body’s own capacity to heal.

“Patients in hospitals are always having things done to them,” Mr. Rossetti explained. “With music therapy, we are giving them resources that they can use to self-regulate, to feel grounded and calmer. We are enabling them to actively participate in their own care.”

The Healing Power of Music

“A Song for Wayne,” performed by Edie Elkan and written as she played at the bedside of a student who was dying.

Even in the coronavirus pandemic, Mr. Rossetti has continued to perform live music for patients. He says that he’s seen increases in acute anxiety since the onset of the pandemic, making musical interventions, if anything, even more impactful than they were before the crisis.

Mount Sinai has also recently expanded its music therapy program to include work with the medical staff, many of whom are suffering from post-traumatic stress from months of dealing with Covid, with live performances offered during their lunch hour.

It’s not just a mood booster. A growing body of research suggests that music played in a therapeutic setting has measurable medical benefits.

“Those who undergo the therapy seem to need less anxiety medicine, and sometimes surprisingly get along without it,” said Dr. Jerry T. Liu, assistant professor of radiation oncology at the Icahn School of Medicine at Mount Sinai.

A review of 400 research papers conducted by Daniel J. Levitin at McGill University in 2013 concluded that “listening to music was more effective than prescription drugs in reducing anxiety prior to surgery.”

“Music takes patients to a familiar home base within themselves. It relaxes them without side effects,” said Dr. Manjeet Chadha, the director of radiation oncology at Mount Sinai Downtown in New York.

It can also help people deal with longstanding phobias. Mr. Rossetti remembers one patient who had been pinned under concrete rubble at Ground Zero on 9/11. The woman, who years later was being treated for breast cancer, was terrified by the thermoplastic restraining device placed over her chest during radiation and which reawakened her feelings of being entrapped.

“Daily music therapy helped her to process the trauma and her huge fear of claustrophobia and successfully complete the treatment,” Mr. Rossetti recalled.

Some hospitals have introduced prerecorded programs that patients can listen to with headphones. At Mount Sinai Beth Israel, the music is generally performed live using a wide array of instruments including drums, pianos and flutes, with the performers being careful to maintain appropriate social distance.

“We modify what we play according to the patient’s breath and heart rate,” said Joanne Loewy, the founding director of the hospital’s Louis Armstrong Center for Music & Medicine. “Our goal is to anchor the person, to keep their mind connected to the body as they go through these challenging treatments.”

Edie Elkan plays the harp as part of the music therapy program at Robert Wood Johnson Hospital in New Jersey.
Edie Elkan plays the harp as part of the music therapy program at Robert Wood Johnson Hospital in New Jersey.Edie Elkan

Dr. Loewy has pioneered techniques that use several unusual instruments like a Gato Box, which simulates the rhythms of the mother’s heartbeat, and an Ocean Disc, which mimics the whooshing sounds in the womb to help premature babies and their parents relax during their stay in noisy neonatal intensive care units.

Dr. Dave Bosanquet, a vascular surgeon at the Royal Gwent Hospital in Newport, Wales, says that music has become much more common in operating rooms in England in recent years with the spread of bluetooth speakers. Prerecorded music not only helps surgical patients relax, he says, it also helps surgeons focus on their task. He recommends classical music, which “evokes mental vigilance” and lacks distracting lyrics, but cautions that it “should only be played during low or average stress procedures” and not during complex operations, which demand a sharper focus.

Music has also been used successfully to support recovery after surgery. A study published in The Lancet in 2015 reported that music reduced postoperative pain and anxiety and lessened the need for anti-anxiety drugs. Curiously, they also found that music was effective even when patients were under general anesthesia.

None of this surprises Edie Elkan, a 75-year-old harpist who argues there are few places in the health care system that would not benefit from the addition of music. The first time she played her instrument in a hospital was for her husband when he was on life support after undergoing emergency surgery.

“The hospital said that I couldn’t go into the room with my harp, but I insisted,” she said. As she played the harp for him, his vital signs, which had been dangerously low, returned to normal. “The hospital staff swung the door open and said, ‘You need to play for everyone.’”

Ms. Elkan took these instructions to heart. After she searched for two years for a hospital that would pay for the program, the Robert Wood Johnson University Hospital in Hamilton, N.J., signed on, allowing her to set up a music school on their premises and play for patients at all stages in their hospitalization.

Ms. Elkan and her students have played for over a hundred thousand patients in 11 hospitals that have hosted them since her organization, Bedside Harp, was started in 2002.

In the months since the pandemic began, the harp players have been serenading patients at the entrance to the hospital, as well as holding special therapeutic sessions for the staff outdoors. They hope to resume playing indoors later this spring.

For some patients being greeted at the hospital door by ethereal harp music can be a shocking experience.

Recently, one woman in her mid-70s turned back questioningly to the driver when she stepped out of the van to a medley of familiar tunes like “Beauty and the Beast” and “Over the Rainbow” being played by a harpist, Susan Rosenstein. “That’s her job,” the driver responded, “to put a smile on your face.”

While Ms. Elkan says that it is hard to scientifically assess the impact — “How do you put a number on the value of someone smiling who has not smiled in six months?”— studies suggest that harp therapy helps calm stress and put both patients and hospital staff members at ease.

Ms. Elkan is quick to point out that she is not doing music therapy, whose practitioners need to complete a five-year course of study during which they are trained in psychology and aspects of medicine.

“Music therapists have specific clinical objectives,” she said. “We work intuitively — there’s no goal but to calm, soothe and give people hope.”

“When we come onto a unit, we remind people to exhale,” Ms. Elkan said. “Everyone is kind of holding their breath, especially in the E.R. and the I.C.U. When we come in, we dial down the stress level several decibels.”

Ms. Elkan’s harp can do more than just soothe emotions, says Ted Taylor, who directs pastoral care at the hospital. It can offer spiritual comfort to people who are at a uniquely vulnerable moment in their lives.

“There is something mysterious that we can’t quantify,” Mr. Taylor, a Quaker, said. “I call it soul medicine. Her harp can touch that deep place that connects all of us as human beings.”

Health Care Workers on the Frontline Face a Year of Risk, Fear and Loss

Gabrielle Dawn Luna followed her father into emergency nursing. She was the last person to hold his hand when he died of Covid in April at her hospital in Teaneck, N.J.
Gabrielle Dawn Luna followed her father into emergency nursing. She was the last person to hold his hand when he died of Covid in April at her hospital in Teaneck, N.J.Credit…Calla Kessler for The New York Times

A Year of Risk, Fear and Loss for Families in Medicine

For many nurses and doctors, medicine was an inherited calling and one that bound couples. Then the virus threatened the ones they love.

Gabrielle Dawn Luna followed her father into emergency nursing. She was the last person to hold his hand when he died of Covid in April at her hospital in Teaneck, N.J.Credit…Calla Kessler for The New York Times

  • March 12, 2021, 9:42 a.m. ET

Gabrielle Dawn Luna sees her father in every patient she treats.

As an emergency room nurse in the same hospital where her father lay dying of Covid last March, Ms. Luna knows firsthand what it’s like for a family to hang on to every new piece of information. She’s become acutely aware of the need to take extra time in explaining developments to a patient’s relatives who are often desperate for updates.

And Ms. Luna has been willing to share her personal loss if it helps, as she did recently with a patient whose husband died. But she has also learned to withhold it to respect each person’s distinct grief, as she did when a colleague’s father also succumbed to the disease.

It’s challenging, she said, to allow herself to grieve enough to help patients without feeling overwhelmed herself.

“Sometimes I think that’s too big a responsibility,” she said. “But that’s the job that I signed up for, right?”

The Lunas are a nursing family. Her father, Tom Omaña Luna, was also an emergency nurse and was proud when Ms. Luna joined him in the field. When he died on April 9, Ms. Luna, who also had mild symptoms of Covid-19, took about a week off work. Her mother, a nurse at a long-term-care facility, spent about six weeks at home afterward.

“She didn’t want me to go back to work for fear that something would happen to me, too,” Ms. Luna said. “But I had to go back. They needed me.”

When her hospital in Teaneck, N.J. swelled with virus patients, she struggled with stress, burnout and a nagging fear that left her grief an open wound: “Did I give it to him? I don’t want to think about that, but it’s a possibility.”

Like the Lunas, many who have been treating the millions of coronavirus patients in the United States over the past year come from families defined by medicine. It is a calling passed through generations, one that binds spouses and connects siblings who are states apart.

It’s a bond that brings the succor of shared experience, but for many, the pandemic has also introduced a host of fears and stresses. Many have worried about the risks they’re taking and those their loved ones face every day, too. They worry about the unseen scars left behind.

And for those like Ms. Luna, the care they give to coronavirus patients has come to be shaped by the beloved healer they lost to the virus.

Working through grief

Dr. Shawki Zuabi, right, who was from Nazareth, Israel, loved painting, fishing and rich conversation.Credit…Gabriella Angotti-Jones for The New York Times
“He believed in me so much,” Dr. Nadia Zuabi said. They had talked about working together one day.Credit…Gabriella Angotti-Jones for The New York Times

For Dr. Nadia Zuabi, the loss is so new that she still refers to her father, a fellow emergency department physician, in the present tense.

Her father, Dr. Shawki Zuabi, spent his last days in her hospital, UCI Health in Orange County, Calif., before dying of Covid on Jan. 8. The younger Dr. Zuabi almost immediately returned to work, hoping to keep going through purpose and her colleagues’ camaraderie.

She had expected that working alongside the people who had cared for her father would deepen her commitment to her own patients, and to some extent it has. But mainly, she came to realize how important it is to balance that taxing emotional availability with her own well-being.

“I try to always be as empathetic and compassionate as I can,” Dr. Zuabi said. “There’s a part of you that maybe as a survival mechanism has to build a wall because to feel that all the time, I don’t think it’s sustainable.”

Work is filled with reminders. When she saw a patient’s fingertips, she recalled how her colleagues had also pricked her father’s to check insulin levels.

“He had all these bruises on his fingertips,” she said. “It just broke my heart.”

The two had always been close, but they found a special connection when she went to medical school. Physicians often descend from physicians. About 20 percent in Sweden have parents with medical degrees, and researchers believe the rate is similar in the United States.

The older Dr. Zuabi had a gift for conversation and loved talking about medicine with his daughter as he sat in his living room chair with his feet propped up. She is still in her residency training, and throughout last year she would go to him for advice on the challenging Covid cases she was working on and he’d bat away her doubts. “You need to trust yourself,” he’d tell her.

When he caught the virus, she took time off to be at his bedside every day, and continued their conversations. Even when he was intubated, she pretended they were still talking.

She still does. After difficult shifts, she turns to her memories, the part of him that stays with her. “He really thought that I was going to be a great doctor,” she said. “If my dad thought that of me, then it has to be true. I can do it, even if sometimes it doesn’t feel like it.”

Love tempered by risk and horror

“We definitely have cathartic moments together where we just let it all out,” said Dr. Fred E. Kency Jr., who met his wife in medical school.Credit…Rory Doyle for The New York Times

In the same way that medicine is often a passion grown from a set of values passed from one generation to the next, it’s also one shared by siblings and one that draws healers together in marriage.

About 14 percent of physicians in the United States have siblings who also earned medical degrees, according to an estimate provided by Maria Polyakova, a health policy professor at Stanford University. And a fourth of them are married to another physician, according to a study published in the Annals of Internal Medicine.

In interviews with a dozen doctors and nurses, they described how it has long been helpful to have a loved one who knows the rigors of the job. But the pandemic has also revealed how frightening it can be to have a loved one in harm’s way.

A nurse’s brother tended to her when she had the virus before volunteering in another virus hot spot. A doctor had a bracing talk with her children about what would happen if she and her husband both died from the virus. And others described quietly weeping during a conversation about wills after putting their children to bed.

Dr. Fred E. Kency Jr., a physician at two emergency departments in Jackson, Miss., understood that he was surrounded by danger when he served in the Navy. He never expected that he would face such a threat in civilian life, or that his wife, an internist and pediatrician, would also face the same hazards.

“It is scary to know that my wife, each and every day, has to walk into rooms of patients that have Covid,” Dr. Kency said, before he and his wife were vaccinated. “But it’s rewarding in knowing that not just one of us, both of us, are doing everything we possibly can to save lives in this pandemic.”

The vaccine has eased fears about getting infected at work for those medical workers who have been inoculated, but some express deep concerns about the toll that working through a year of horrors has taken on their closest relatives.

“I worry about the amount of suffering and death she’s seeing,” Dr. Adesuwa I. Akhetuamhen, an emergency medicine physician at Northwestern Medicine in Chicago, said of her sister, who is a doctor at the Mayo Clinic in Rochester, Minn. “I feel like it’s something I’ve learned to cope with, working in the emergency department before Covid started, but it’s not something that’s supposed to happen in her specialty as a neurologist.”

“Of all my family members, I worry about her the most,” Dr. Adesuwa I. Akhetuamhen said.Credit…Sebastian Hidalgo for The New York Times
“We keep each other safe,” Dr. Eseosa T. Ighodaro said.Credit…Caroline Yang for The New York Times

She and her sister, Dr. Eseosa T. Ighodaro, have regularly talked on the phone to compare notes about precautions they’re taking, provide updates on their family and offer each other support. “She completely understands what I am going through and gives me encouragement,” Dr. Ighodaro said.

The seemingly endless intensity of work, the mounting deaths and the cavalier attitudes some Americans display toward safety precautions have caused anxiety, fatigue and burnout for a growing number of health care workers. Nearly 25 percent of them most likely have PTSD, according to a survey that the Yale School of Medicine published in February. And many have left the field or are considering doing so.

Donna Quinn, a midwife at N.Y.U. Health in Manhattan, has worried that her son’s experience as an emergency room physician in Chicago will lead him to leave the field he only recently joined. He was in his last year of residency when the pandemic began, and he volunteered to serve on the intubation team.

“I worry about the toll it’s taking on him emotionally,” she said. “There have been nights where we are in tears talking about what we’ve encountered.”

She still has nightmares that are sometimes so terrifying that she falls out of bed. Some are about her son or patients she can’t help. In one, a patient’s bed linens transform into a towering monster that chases her out of the room.

A nurse’s purpose

When Ms. Luna first returned to her emergency room at Holy Name Medical Center in Teaneck, N.J., after her father died, she felt as though something was missing. She had gotten used to having him there. It had been nerve-racking as every urgent intercom call for a resuscitation made her wonder, “Is that my dad?” But she could at least stop by every now and again to see how he was doing.

More than that though, she had never known what it was like to be a nurse without him. She remembered him studying to enter the field when she was in elementary school, coloring over nearly every line in his big textbooks with yellow highlighter.

Over breakfast last March, Ms. Luna told her father how shaken she was after holding an iPad for a dying patient to say goodbye to a family who couldn’t get into the hospital.

“This is our profession,” she recalled Mr. Luna saying. “We are here to act as family when family can’t be there. It’s a hard role. It’s going to be hard, and there will be more times where you’ll have to do it.”

Tom Omaña Luna, who was from the Philippines, had warm humor, deep faith and a funny way of shuffling his feet as he walked through the family home in Woodbridge, N.J. “I just miss it,” his daughter said.Credit…Calla Kessler for The New York Times

Kitty Bennett contributed research.

Learning to Listen to Patients’ Stories

Waclawa “Joanne” Zak, who now lives in Oxford, Wis., fought in the Polish resistance during World War II. As a teenager, she served as a scout, assessing German troop strength and positions. Later in the war she trained as a nurse and was liberated from a German P.O.W. camp. She told her story as part of the “My Life, My Story” program at the William S. Middleton Memorial Veterans Hospital in Madison, Wis.
Waclawa “Joanne” Zak, who now lives in Oxford, Wis., fought in the Polish resistance during World War II. As a teenager, she served as a scout, assessing German troop strength and positions. Later in the war she trained as a nurse and was liberated from a German P.O.W. camp. She told her story as part of the “My Life, My Story” program at the William S. Middleton Memorial Veterans Hospital in Madison, Wis.Credit…Andy Manis for The New York Times

Learning to Listen to Patients’ Stories

Narrative medicine programs teach doctors and other caregivers “sensitive interviewing skills” and the art of “radical listening” to improve patient care.

Waclawa “Joanne” Zak, who now lives in Oxford, Wis., fought in the Polish resistance during World War II. As a teenager, she served as a scout, assessing German troop strength and positions. Later in the war she trained as a nurse and was liberated from a German P.O.W. camp. She told her story as part of the “My Life, My Story” program at the William S. Middleton Memorial Veterans Hospital in Madison, Wis.Credit…Andy Manis for The New York Times

  • Feb. 25, 2021, 5:00 a.m. ET

The pandemic has been a time of painful social isolation for many. Few places can be as isolating as hospitals, where patients are surrounded by strangers, subject to invasive tests and attached to an assortment of beeping and gurgling machines.

How can the experience of receiving medical care be made more welcoming? Some say that a sympathetic ear can go a long way in helping patients undergoing the stress of a hospital stay to heal.

“It is even more important now, when we can’t always see patients’ faces or touch them, to really hear their stories,” said Dr. Antoinette Rose, an urgent care physician in Mountain View, Calif., who is now working with many patients ill with Covid.

“This pandemic has forced many caregivers to embrace the human stories that are playing out. They have no choice. They become the ‘family’ at the bedside,” said Dr. Andre Lijoi, a medical director at York Hospital in Pennsylvania. Doctors, nurses and others assisting in the care of patients “need time to slow down, to take a breath, to listen.”

Both doctors find their inspiration in narrative medicine, a discipline that guides medical practitioners in the art of deeply listening to those who come to them for help. Narrative medicine is now taught in some form at roughly 80 percent of medical schools in the United States. Students are trained in “sensitive interviewing skills” and the art of “radical listening” as ways to enhance the interactions between doctors and their patients.

“As doctors, we need to ask those who come to us: ‘Tell me about yourself,’” explained Dr. Rita Charon, who founded Columbia University’s pioneering narrative medicine program in 2000. “We have fallen out of that habit because we think we know the questions to ask. We have a checklist of symptom questions. But there is an actual person in front of us who is not just a collection of symptoms.”

Columbia is currently offering training online for medical students like Fletcher Bell, who says the course is helping to transform the way he sees his future role as healer. As part of his narrative medicine training, Mr. Bell has kept in touch virtually with a woman who was being treated for ovarian cancer, an experience of sharing that he described as being both heartbreaking and also beautiful.

“Simply listening to people’s stories can be therapeutic,” Mr. Bell observed. “If there is fluid in the lungs, you drain it. If there is a story in the heart, it’s important to get that out too. It is also a medical intervention, just not one that can be easily quantified.”

This more personalized approach to medical care is not a new art. In the not-so-distant past, general practitioners often treated several generations of the same family, and they knew a lot about their lives. But as medicine became increasingly institutionalized, it became more rushed and impersonal, said Dr. Charon.

The typical doctor visit now lasts from 13 to 16 minutes, which is generally all that insurance companies will pay for. A 2018 study published in the Journal of General Internal Medicine found that the majority of doctors at the prestigious Mayo Clinic didn’t even ask people the purpose of their visit, and they frequently interrupted patients as they spoke about themselves.

But this fast-food approach to medicine sacrifices something essential, says Dr. Deepu Gowda, assistant dean of medical education at the Kaiser-Permanente School of Medicine in Pasadena, Calif., who was trained by Dr. Charon at Columbia.

Dr. Gowda recalls one elderly patient he saw during his residency who suffered from severe arthritis and whom he experienced as being angry and frustrated. He came to dread her office visits. Then he started asking the woman questions and listened with interest as her personal history unfolded. He became so intrigued by her life story that he asked her permission to take photographs of her outside the hospital, which she granted.

Dr. Gowda was particularly struck by one picture of his patient, cane in hand, clutching onto the banister of her walk-up apartment. “That image represented for me her daily struggles,” he said. “I gave her a copy. It was a physical representation of the fact that I cared for who she was as a person. Her pain didn’t go away, but there was a lightness and laughter in those later visits that wasn’t there before. There was a kind of healing that took place in that simple human recognition.”

While few working doctors have the leisure time to photograph their patients outside the clinic, or to probe deeply into their life history, “people pick up on it” when the doctor expresses genuine interest in them, Dr. Gowda said. They trust such a doctor more, becoming motivated to follow their instructions and to return for follow-up visits, he said.

Some hospitals have started conducting preliminary interviews with patients before the clinical work begins as a way to get to know them better.

Darrell Krenz of Madison, Wis., recounted his Army days as part of the V.A.’s “My Life, My Story” program.Credit…Andy Manis for The New York Times
Orlando Dowell, a 16-year Marine Corps veteran and “My Life, My Story” participant, at his home in Dakota, Ill.Credit…Andy Manis for The New York Times

Thor Ringler, a family therapist, started the “My Life, My Story” program at the William S. Middleton Memorial Veterans Hospital in Madison, Wis., in 2013. Professional writers are hired to interview veterans — by phone and video conference since the onset of the pandemic — and to draft a short biography that is added to their medical record and read by their attending physician.

“My goal was to provide vets with a way of being heard in a large bureaucratic system where they don’t always feel listened to,” Mr. Ringler said.

The program has spread to 60 V.A. hospitals, including in Boston, where more than 800 veteran stories have been compiled over the past three years. Jay Barrett, nurse manager at the VA Boston Healthcare System, said these biographies often provide critical information that can help guide the treatment.

“Unless they have access to the patient’s story,” Ms. Barrett said, “health care providers don’t understand that this is a mother who is taking care of six children, or who doesn’t have the resources to pay for medication, or this is a veteran that has severe trauma that needs to be addressed before even talking about how to manage the pain.”

Dr. Lewis Mehl-Madrona, a family doctor who teaches at the University of New England in Biddeford, Maine, has been studying veterans who were undergoing treatment for pain. Those who were asked to tell about their lives experienced less chronic pain and rated the relationship with their physician higher than those who had not. The doctors who solicited the stories also reported more job satisfaction and were subject to less emotional burnout, which has become an especially worrisome problem during the Covid pandemic.

Demands have never been greater on health care workers’ time. But narrative medicine advocates say that it only takes a few moments to forge an authentic human connection, even when the communication takes place online, as it often does now. Dr. Mehl-Madrona argues that remote videoconferencing platforms like Zoom can actually make it even easier to keep track of vulnerable people and to solicit their stories.

Derek McCracken, a lecturer at Columbia University who helped develop training protocols for using narrative techniques in telehealth, agrees. “Telehealth technology can be a bridge,” he said, “because it’s an equalizer, forcing both parties to slow the conversation down, be vulnerable and listen attentively.”

The critical point for Dr. Mehl-Madrona is that when people are asked to talk about themselves — whether that happens in person or onscreen — they are “not just delivering themselves to the doctor to be fixed. They become actively engaged in their own healing.”

“Doctors can be replaced by computers or by nurses if they think their only role is just to prescribe drugs,” he added. “If we want to avoid the fate of the Dodo bird, then we have to engage in dynamic relationships with patients, we have to put the symptoms in the context of people’s lives.”

For Some Teens, It’s Been a Year of Anxiety and Trips to the E.R.

For Some Teens, It’s Been a Year of Anxiety and Trips to the E.R.

During the pandemic, suicidal thinking is up. And families find that hospitals can’t handle adolescents in crisis.

Lisa, a mother of three in Asheville, N.C., said that months of virtual classes and social isolation had changed her extroverted 13-year-old son “in profound ways I would never have anticipated.”
Lisa, a mother of three in Asheville, N.C., said that months of virtual classes and social isolation had changed her extroverted 13-year-old son “in profound ways I would never have anticipated.”Credit…Jacob Biba for The New York Times
Benedict Carey

  • Published Feb. 23, 2021Updated Feb. 24, 2021, 5:00 a.m. ET

When the pandemic first hit the Bay Area last spring, Ann thought that her son, a 17-year-old senior, was finally on track to finish high school. He had kicked a heavy marijuana habit and was studying in virtual classes while school was closed.

The first wave of stay-at-home orders shut down his usual routines — sports, playing music with friends. But the stability didn’t last.

“The social isolation since then, over all this time, it just got to him,” said Ann, a consultant living in suburban San Francisco. She, like the other parents in this article, asked that her last name be omitted for privacy and to protect her child. “This is a charming, funny kid, also sensitive and anxious,” she said. “He couldn’t find a job; he couldn’t really go out. And he started using marijuana again, and Xanax.”

The teenager’s frustration finally boiled over this month, when he deliberately cut himself.

“We called 911, and he was taken to the emergency room,” his mother said. “But there they just stitched him up and released him.” The doctors sent him home, she said, “with no support, no therapy, nothing.”

Ann and her son are like many families over the last year. Surveys and statistics show that for young people who are anxious by nature, or feeling emotionally fragile already, the pandemic and its isolation have pushed them to the brink. Rates of suicidal thinking and behavior are up by 25 percent or more from similar periods in 2019, according to a just-published analysis of surveys of young patients coming into the emergency room.

For these teenagers, there aren’t many places to turn. They need help, but it’s hard to come up with a psychiatric diagnosis. They are trying to manage a surprise interruption in their lives, a vague loss. And without a diagnosis, reimbursement for therapy is hard to come by. And that is assuming parents know what kind of help is appropriate, and where to find it.

Finally, when a crisis hits, many of these teenagers end up in the local emergency department — the one place desperate families so often go for help.

Many E.R. departments across the country are now seeing a surge in such cases. Through most of 2020, the proportion of pediatric emergency admissions for mental problems, like panic and anxiety, was up by 24 percent for young children and 31 percent for adolescents compared to the previous year, according to a recent report by the Centers for Disease Control and Prevention.

And the local emergency department is frequently unprepared for the added burden. Workers often are not specially trained to manage behavioral problems, and families don’t have many options for where to go next, leaving many of these pandemic-insecure adolescents in limbo at the E.R.

“This is a national crisis we’re facing,” Dr. Rebecca Baum, a developmental pediatrician in Asheville, N.C. “Kids are having to board in the E.R. for days on end, because there are no psychiatric beds available in their entire state, never mind the hospital. And of course, the child or adolescent is lying there and doesn’t understand what’s happening in the E.R., why they’re having to wait there or where they’re going.”

What Adolescents Are Feeling

Most teenagers and young adults have done fine through this pandemic year, provided that their families have stayed healthy and economically stable. They may be irritable or missing their friends, but their support networks have been enough to get them through the pandemic.

For the young people coming undone, however, pandemic life presents unusual challenges, pediatricians say. Most are temperamentally sensitive and after months of being socially cut off from friends and activities, they have much less control over their moods.

“What parents and children are consistently reporting is an increase in all symptoms — a child who was a little anxious before the pandemic became very anxious over this past year,” said Dr. Adiaha I. A. Spinks-Franklin, an associate professor of pediatrics at the Baylor College of Medicine. It is this prolonged stress, Dr. Spinks-Franklin said, that in time blunts the brain’s ability to manage emotions.

Jean, an artist and mother of two living in Hendersonville, N.C., said that her 17-year-old son was doing fine through last spring. But the months of virtual classes and loss of simple social pleasures — hanging out with friends, playing chess — changed him through the fall months.

“Now, he’s become very reclusive, he has mood swings, he cries a lot,” Jean said. “This giant boy, crying — it’s terrible to see.” The young man has had panic attacks, twice followed by a blackout. During one, he fell and injured his face.

Dr. Adiaha I. A. Spinks-Franklin, an associate professor of pediatrics at the Baylor College of Medicine, says it’s the prolonged stress that blunts the brain’s ability to manage emotions.
Dr. Adiaha I. A. Spinks-Franklin, an associate professor of pediatrics at the Baylor College of Medicine, says it’s the prolonged stress that blunts the brain’s ability to manage emotions.Credit…Brett Deering for The New York Times

Lisa, a mother of three in Asheville, said that the months of virtual classes and relative social isolation had changed her extroverted 13-year-old son “in profound ways I would never have anticipated.”

His grades slipped badly, and he began to withdraw. “Next, he was telling us he couldn’t make himself do the work, that he didn’t want to disappoint us all the time, that he was worthless. Worthless.”

These young people do not necessarily qualify for a psychiatric diagnosis, nor are they “traumatized” in the strict sense of having had a life-threatening experience (or the perception of one.) Rather, they are trying to manage an interruption in their normal development, child psychologists say: a sudden and indefinite suspension of almost every routine and social connection, leaving a deep yet vague sense of loss with no single, distinct source.

The result is grief, but grief without a name or a specific cause, an experience some psychologists call “ambiguous loss.” The concept is usually reserved to describe the experience of immigrants, displaced from everything familiar, who shut down emotionally in a new and strange country. Or to describe disaster survivors, who return to neighborhoods that are hollowed out, transformed.

“Everything that used to be familiar and give structure to their lives, and predictability, and normalcy, is gone,” said Sharon Young, a therapist in Hendersonville. “Kids need all these things even more than adults do, and it’s hard for them to feel emotionally safe when they’re no longer there.”

System Overload

The resulting changes in behavior can seem sudden: A bright sixth-grader is found cutting herself; a sweet-natured sophomore takes a swing at a parent or sibling. Parents, frightened, often don’t know where to go for appropriate help. Many don’t have the resources or knowledge to hire a therapist.

Families that land in the emergency departments of their local hospitals often find that the clinics are poorly equipped to handle these incoming cases. The staff is better trained to manage physical trauma than the mental variety, and patients are often sent right back home, without proper evaluation or support. In severe cases, they may linger in the emergency department for days before a bed can be found elsewhere.

In a recent report, a research team led by the C.D.C. found that less than half of the emergency departments in U.S. hospitals had clear policies in place to handle children with behavior problems. Getting to the bottom of any complex behavior issue can takes days of patient observation, at minimum, psychiatrists say. And many emergency departments do not have the on-hand specialists, dedicated space or off-site resources to help do the job well.

For Jean, diagnosing her son has been complicated. He has since developed irritable bowel syndrome. “He has been losing weight, and started smoking pot due to the boredom,” Jean said. “This is all due to the anxiety.”

Nationwide Children’s Hospital in Columbus, Ohio, has an emergency department that is a decent size for a pediatric hospital, with capacity for 62 children or adolescents. But well before the arrival of the coronavirus, the department was straining to handle increasing numbers of patients with behavior problems.

“This was huge problem pre-pandemic,” said Dr. David Axelson, chief of psychiatry and behavioral health at the hospital. “We were seeing a rise in emergency department visits for mental health problems in kids, specifically for suicidal thinking and self-harm. Our emergency department was overwhelmed with it, having to board kids on the medical unit while waiting for psych beds.”

Last March, to address the crowding, Nationwide Children’s opened a new pavilion, a nine-story facility with 54 dedicated beds for observation and for longer-term stays for those with mental challenges. It has taken the pressure off the hospital’s regular emergency department and greatly improved care, Dr. Axelson said.

Over this pandemic year, with the number of admissions for mental health problems up by some 15 percent over previous years, it is hard to imagine what it would have been like without the additional, devoted behavioral clinic, Dr. Axelson said.

Other hospitals from out of state often call, hoping to place a patient in crisis, but there is simply not enough space. “We have to say no,” Dr. Axelson said.

“We had a shaky system of care in pediatric mental health prior to this pandemic, and now we have all these added stressors on it,” said  Dr. Rebecca Baum, a developmental pediatrician in Asheville, N.C.Credit…Jacob Biba for The New York Times

Dr. Rachel Stanley, the chief of emergency medicine at Nationwide, said that most hospitals have far fewer resources. “I worked at a hospital in Michigan for years, and when these kinds of kids come in, everyone dreaded seeing them, because we didn’t feel like we had the tools to help,” she said. “They have to go into a safe room; they can’t be in a shared area. You have to provide a sitter for the child, a staff person to stay with them all the time to make sure they’re not suicidal or homicidal. It could take hours and hours to get social workers involved, and all this time they’re getting worse.”

Anne, the consultant in the Bay Area, said that her son’s visit to the emergency room this month was his third in the past 18 months, each time for issues related to drug withdrawal. On one visit, he was misdiagnosed with psychosis and sent to a locked county psychiatric ward. “That experience itself — locked for days in a ward, with no one telling him why, or how long he’d be there — was the most traumatic thing he’s experienced,” she said.

Like many other parents, she is now looking after an unstable child and wondering where to go next. A drug rehab program may be needed, as well as regular therapy.

Lisa has hired a therapist for her son, a Zoom session every other week. That seems to have helped, she said, but it is too early to tell. And Jean, for the moment, is hoping the infection risk will diminish soon, so her son can get a safe job.

All three parents have become keen observers of their children, more aware of shifting moods. Listening by itself usually helps relieve distress, therapists say. “Trying to educate parents is a routine part of the job,” said Dr. Robert Duffey, a pediatrician in Hendersonville. “And of course we need these kids back in school, so badly.”

But medical professional say that until the health care system finds a way to equip and support emergency departments for what they have become — the first and sometimes last resort — parents will be left to navigate mostly on their own, leaning on others who have managed similar problems.

“Covid has put our system under a microscope in terms of the things that don’t work,” said Dr. Baum, the pediatrician in Asheville. “We had a shaky system of care in pediatric mental health prior to this pandemic, and now we have all these added stressors on it, all these kids coming in for pandemic-related issues. Hospitals everywhere are scrambling to adjust.”

If you are having thoughts of suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255 (TALK). You can find a list of additional resources at SpeakingOfSuicide.com/resources.

For Some Teens, It’s Been a Year of Anxiety and Trips to the E.R.

For Some Teens, It’s Been a Year of Anxiety and Trips to the E.R.

During the pandemic, suicidal thinking is up. And families find that hospitals can’t handle adolescents in crisis.

Lisa, a mother of three in Asheville, N.C., said that months of virtual classes and social isolation had changed her extroverted 13-year-old son “in profound ways I would never have anticipated.”
Lisa, a mother of three in Asheville, N.C., said that months of virtual classes and social isolation had changed her extroverted 13-year-old son “in profound ways I would never have anticipated.”Credit…Jacob Biba for The New York Times
Benedict Carey

  • Feb. 23, 2021, 3:48 p.m. ET

When the pandemic first hit the Bay Area last spring, Ann thought that her son, a 17-year-old senior, was finally on track to finish high school. He had kicked a heavy marijuana habit and was studying in virtual classes while school was closed.

The first wave of stay-at-home orders shut down his usual routines — sports, playing music with friends. But the stability didn’t last.

“The social isolation since then, over all this time, it just got to him,” said Ann, a consultant living in suburban San Francisco. She, like the other parents in this article, asked that her last name be omitted for privacy and to protect her child. “This is a charming, funny kid, also sensitive and anxious,” she said. “He couldn’t find a job; he couldn’t really go out. And he started using marijuana again, and Xanax.”

The teenager’s frustration finally boiled over this month, when he deliberately cut himself.

“We called 911, and he was taken to the emergency room,” his mother said. “But there they just stitched him up and released him.” The doctors sent him home, she said, “with no support, no therapy, nothing.”

Ann and her son are like many families over the last year. Surveys and statistics show that for young people who are anxious by nature, or feeling emotionally fragile already, the pandemic and its isolation have pushed them to the brink. Rates of suicidal thinking and behavior are up by 25 percent or more from similar periods in 2019, according to a just-published analysis of surveys of young patients coming into the emergency room.

For these teenagers, there aren’t many places to turn. They need help, but it’s hard to come up with a psychiatric diagnosis. They are trying to manage a surprise interruption in their lives, a vague loss. And without a diagnosis, reimbursement for therapy is hard to come by. And that is assuming parents know what kind of help is appropriate, and where to find it.

Finally, when a crisis hits, many of these teenagers end up in the local emergency department — the one place desperate families so often go for help.

Many E.R. departments across the country are now seeing a surge in such cases. Through most of 2020, the proportion of pediatric emergency admissions for mental problems, like panic and anxiety, was up by 24 percent for young children and 31 percent for adolescents compared to the previous year, according to a recent report by the Centers for Disease Control and Prevention.

And the local emergency department is frequently unprepared for the added burden. Workers often are not specially trained to manage behavioral problems, and families don’t have many options for where to go next, leaving many of these pandemic-insecure adolescents in limbo at the E.R.

“This is a national crisis we’re facing,” Dr. Rebecca Baum, a developmental pediatrician in Asheville, N.C. “Kids are having to board in the E.R. for days on end, because there are no psychiatric beds available in their entire state, never mind the hospital. And of course, the child or adolescent is lying there and doesn’t understand what’s happening in the E.R., why they’re having to wait there or where they’re going.”

What Adolescents Are Feeling

Most teenagers and young adults have done fine through this pandemic year, provided that their families have stayed healthy and economically stable. They may be irritable or missing their friends, but their support networks have been enough to get them through the pandemic.

For the young people coming undone, however, pandemic life presents unusual challenges, pediatricians say. Most are temperamentally sensitive and after months of being socially cut off from friends and activities, they have much less control over their moods.

“What parents and children are consistently reporting is an increase in all symptoms — a child who was a little anxious before the pandemic became very anxious over this past year,” said Dr. Adiaha I. A. Spinks-Franklin, an associate professor of pediatrics at the Baylor College of Medicine. It is this prolonged stress, Dr. Spinks-Franklin said, that in time blunts the brain’s ability to manage emotions.

Jean, an artist and mother of two living in Hendersonville, N.C., said that her 17-year-old son was doing fine through last spring. But the months of virtual classes and loss of simple social pleasures — hanging out with friends, playing chess — changed him through the fall months.

“Now, he’s become very reclusive, he has mood swings, he cries a lot,” Jean said. “This giant boy, crying — it’s terrible to see.” The young man has had panic attacks, twice followed by a blackout. During one, he fell and injured his face.

Dr. Adiaha I. A. Spinks-Franklin, an associate professor of pediatrics at the Baylor College of Medicine, says it’s the prolonged stress that blunts the brain’s ability to manage emotions.
Dr. Adiaha I. A. Spinks-Franklin, an associate professor of pediatrics at the Baylor College of Medicine, says it’s the prolonged stress that blunts the brain’s ability to manage emotions.Credit…Brett Deering for The New York Times

Lisa, a mother of three in Asheville, said that the months of virtual classes and relative social isolation had changed her extroverted 13-year-old son “in profound ways I would never have anticipated.”

His grades slipped badly, and he began to withdraw. “Next, he was telling us he couldn’t make himself do the work, that he didn’t want to disappoint us all the time, that he was worthless. Worthless.”

These young people do not necessarily qualify for a psychiatric diagnosis, nor are they “traumatized” in the strict sense of having had a life-threatening experience (or the perception of one.) Rather, they are trying to manage an interruption in their normal development, child psychologists say: a sudden and indefinite suspension of almost every routine and social connection, leaving a deep yet vague sense of loss with no single, distinct source.

The result is grief, but grief without a name or a specific cause, an experience some psychologists call “ambiguous loss.” The concept is usually reserved to describe the experience of immigrants, displaced from everything familiar, who shut down emotionally in a new and strange country. Or to describe disaster survivors, who return to neighborhoods that are hollowed out, transformed.

“Everything that used to be familiar and give structure to their lives, and predictability, and normalcy, is gone,” said Sharon Young, a therapist in Hendersonville. “Kids need all these things even more than adults do, and it’s hard for them to feel emotionally safe when they’re no longer there.”

System Overload

The resulting changes in behavior can seem sudden: A bright sixth-grader is found cutting herself; a sweet-natured sophomore takes a swing at a parent or sibling. Parents, frightened, often don’t know where to go for appropriate help. Many don’t have the resources or knowledge to hire a therapist.

Families that land in the emergency departments of their local hospitals often find that the clinics are poorly equipped to handle these incoming cases. The staff is better trained to manage physical trauma than the mental variety, and patients are often sent right back home, without proper evaluation or support. In severe cases, they may linger in the emergency department for days before a bed can be found elsewhere.

In a recent report, a research team led by the C.D.C. found that less than half of the emergency departments in U.S. hospitals had clear policies in place to handle children with behavior problems. Getting to the bottom of any complex behavior issue can takes days of patient observation, at minimum, psychiatrists say. And many emergency departments do not have the on-hand specialists, dedicated space or off-site resources to help do the job well.

For Jean, diagnosing her son has been complicated. He has since developed irritable bowel syndrome. “He has been losing weight, and started smoking pot due to the boredom,” Jean said. “This is all due to the anxiety.”

Nationwide Children’s Hospital in Columbus, Ohio, has an emergency department that is a decent size for a pediatric hospital, with capacity for 62 children or adolescents. But well before the arrival of the coronavirus, the department was straining to handle increasing numbers of patients with behavior problems.

“This was huge problem pre-pandemic,” said Dr. David Axelson, chief of psychiatry and behavioral health at the hospital. “We were seeing a rise in emergency department visits for mental health problems in kids, specifically for suicidal thinking and self-harm. Our emergency department was overwhelmed with it, having to board kids on the medical unit while waiting for psych beds.”

Last March, to address the crowding, Nationwide Children’s opened a new pavilion, a nine-story facility with 54 dedicated beds for observation and for longer-term stays for those with mental challenges. It has taken the pressure off the hospital’s regular emergency department and greatly improved care, Dr. Axelson said.

Over this pandemic year, with the number of admissions for mental health problems up by some 15 percent over previous years, it is hard to imagine what it would have been like without the additional, devoted behavioral clinic, Dr. Axelson said.

Other hospitals from out of state often call, hoping to place a patient in crisis, but there is simply not enough space. “We have to say no,” Dr. Axelson said.

“We had a shaky system of care in pediatric mental health prior to this pandemic, and now we have all these added stressors on it,” said  Dr. Rebecca Baum, a developmental pediatrician in Asheville, N.C.Credit…Jacob Biba for The New York Times

Dr. Rachel Stanley, the chief of emergency medicine at Nationwide, said that most hospitals have far fewer resources. “I worked at a hospital in Michigan for years, and when these kinds of kids come in, everyone dreaded seeing them, because we didn’t feel like we had the tools to help,” she said. “They have to go into a safe room; they can’t be in a shared area. You have to provide a sitter for the child, a staff person to stay with them all the time to make sure they’re not suicidal or homicidal. It could take hours and hours to get social workers involved, and all this time they’re getting worse.”

Anne, the consultant in the Bay Area, said that her son’s visit to the emergency room this month was his third in the past 18 months, each time for issues related to drug withdrawal. On one visit, he was misdiagnosed with psychosis and sent to a locked county psychiatric ward. “That experience itself — locked for days in a ward, with no one telling him why, or how long he’d be there — was the most traumatic thing he’s experienced,” she said.

Like many other parents, she is now looking after an unstable child and wondering where to go next. A drug rehab program may be needed, as well as regular therapy.

Lisa has hired a therapist for her son, a Zoom session every other week. That seems to have helped, she said, but it is too early to tell. And Jean, for the moment, is hoping the infection risk will diminish soon, so her son can get a safe job.

All three parents have become keen observers of their children, more aware of shifting moods. Listening by itself usually helps relieve distress, therapists say. “Trying to educate parents is a routine part of the job,” said Dr. Robert Duffey, a pediatrician in Hendersonville. “And of course we need these kids back in school, so badly.”

But medical professional say that until the health care system finds a way to equip and support emergency departments for what they have become — the first and sometimes last resort — parents will be left to navigate mostly on their own, leaning on others who have managed similar problems.

“Covid has put our system under a microscope in terms of the things that don’t work,” said Dr. Baum, the pediatrician in Asheville. “We had a shaky system of care in pediatric mental health prior to this pandemic, and now we have all these added stressors on it, all these kids coming in for pandemic-related issues. Hospitals everywhere are scrambling to adjust.”

If you are having thoughts of suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255 (TALK). You can find a list of additional resources at SpeakingOfSuicide.com/resources.

Covid-Linked Syndrome in Children Is Growing and Cases Are More Severe

Covid-Linked Syndrome in Children Is Growing and Cases Are More Severe

The condition, which usually emerges several weeks after infection, is still rare, but can be dangerous. “A higher percentage of them are really critically ill,” one doctor said.

Braden Wilson, of Simi Valley, Calif., with his mother, Amanda. He was hospitalized and placed on a ventilator and a heart-lung bypass machine, but he died on Jan. 5. “My boy was gone,” his mother recalled.
Braden Wilson, of Simi Valley, Calif., with his mother, Amanda. He was hospitalized and placed on a ventilator and a heart-lung bypass machine, but he died on Jan. 5. “My boy was gone,” his mother recalled.Credit…via Amanda Wilson
Pam Belluck

  • Feb. 16, 2021, 3:00 a.m. ET

Fifteen-year-old Braden Wilson was frightened of Covid-19. He was careful to wear masks and only left his house, in Simi Valley, Calif., for things like orthodontist checkups and visits with his grandparents nearby.

But somehow, the virus found Braden. It wreaked ruthless damage in the form of an inflammatory syndrome that, for unknown reasons, strikes some young people, usually several weeks after infection by the coronavirus.

Doctors at Children’s Hospital Los Angeles put the teenager on a ventilator and a heart-lung bypass machine. But they could not stop his major organs from failing. On Jan. 5, “they officially said he was brain dead,” his mother, Amanda Wilson, recounted, sobbing. “My boy was gone.”

Doctors across the country have been seeing a striking increase in the number of young people with the condition Braden had, which is called Multisystem Inflammatory Syndrome in Children or MIS-C. Even more worrisome, they say, is that more patients are now very sick than during the first wave of cases, which alarmed doctors and parents around the world last spring.

“We’re now getting more of these MIS-C kids, but this time, it just seems that a higher percentage of them are really critically ill,” said Dr. Roberta DeBiasi, chief of infectious diseases at Children’s National Hospital in Washington, D.C. During the hospital’s first wave, about half the patients needed treatment in the intensive care unit, she said, but now 80 to 90 percent do.

The reasons are unclear. The surge follows the overall spike of Covid cases in the United States after the winter holiday season, and more cases may simply increase chances for severe disease to emerge. So far, there’s no evidence that recent coronavirus variants are responsible, and experts say it is too early to speculate about any impact of variants on the syndrome.

The condition remains rare. The latest numbers from the Centers for Disease Control and Prevention show 2,060 cases in 48 states, Puerto Rico and the District of Columbia, including 30 deaths. The median age was 9, but infants to 20-year-olds have been afflicted. The data, which is complete only through mid-December, shows the rate of cases has been increasing since mid-October.

While most young people, even those who became seriously ill, have survived and gone home in relatively healthy condition, doctors are uncertain whether any will experience lingering heart issues or other problems.

“We really don’t know what will happen in the long term,” said Dr. Jean Ballweg, medical director of pediatric heart transplant and advanced heart failure at Children’s Hospital & Medical Center in Omaha, Neb., where from April through October, the hospital treated about two cases a month, about 30 percent of them in the I.C.U. That rose to 10 cases in December and 12 in January, with 60 percent needing I.C.U. care — most requiring ventilators. “Clearly, they seem to be more sick,” she said.

Symptoms of the syndrome can include fever, rash, red eyes or gastrointestinal problems. Those can progress to heart dysfunction, including cardiogenic shock, in which the heart cannot squeeze enough to pump blood sufficiently. Some patients develop cardiomyopathy, which stiffens the heart muscle, or abnormal rhythm. Dr. Ballweg said one 15-year-old at her hospital needed a procedure that functioned as a temporary pacemaker.

Jude Knott, 4, at home with his mother, Ashley Knott, was hospitalized for 10 days after developing a headache, fever, vomiting, red eyes and a rapid heart rate.
Jude Knott, 4, at home with his mother, Ashley Knott, was hospitalized for 10 days after developing a headache, fever, vomiting, red eyes and a rapid heart rate.Credit…Kathryn Gamble for The New York Times

Hospitals say most patients test positive for Covid antibodies that indicate previous infection, but some patients also test positive for active coronavirus infection. Many children were previously healthy and had few or no symptoms from their initial Covid infection. Doctors are uncertain which factors predispose children to the syndrome. Dr. Jane Newburger, associate chief for academic affairs in Boston Children’s Hospital’s cardiology department, who is a leader of a nationwide study, said patients with obesity and some older children seem to fare worse.

Sixty-nine percent of reported cases have affected Latino or Black young people, which experts believe stems from socioeconomic and other factors that have disproportionately exposed those communities to the virus. But Omaha’s hospital, where early cases were largely among children of Latino parents working in the meatpacking industry, is now “seeing a much more broad spectrum and every ethnicity,” Dr. Ballweg said.

Jude Knott, 4, was hospitalized in Omaha for 10 days after developing a headache, fever, vomiting, red eyes and a rapid heart rate.

“It was just a roller coaster,” said his mother, Ashley Knott, a career coach at an Omaha nonprofit helping low-income teenagers.

To explain to Jude the infusions of intravenous immunoglobulin doctors were giving him, she said they were “‘putting Ninjas in your blood so they can fight.’” For blood thinner injections, which he hated, she said, “‘Buddy, they’re making your blood go from a milkshake to water because we need it to be water.’ Anything to help him make sense of it.”

Jude recently returned to preschool full time. He has some dilation of a coronary artery, but is improving, his mother said.

“He’s definitely experiencing some anxiety,” Ms. Knott said. “I just worry that he’s kind of been saddled with some adult worries at 4.”

Doctors said they’ve learned effective treatment approaches, which, besides steroids, immunoglobulin and blood thinners, can include blood pressure medications, an immunomodulator called anakinra and supplemental oxygen. Some hospitals use ventilators more than others, experts said.

But though doctors are learning more, pediatricians can miss the syndrome initially because early symptoms can mimic some common ailments.

Mayson Barillas, 11, was hospitalized for eight days at Children’s National Hospital, where his doctors said he exhibited cardiogenic shock.Credit…Rosem Morton for The New York Times

On New Year’s Day, Mayson Barillas, 11, of Damascus, Md., started feeling sick. “My stomach started hurting, and then I went to my soccer game and then I got a fever,” he said.

His mother, Sandy Barillas, a medical assistant at a women’s health practice, gave him Alka Seltzer, Pepto Bismol and Tylenol. Several days later, he developed shortness of breath and they went to an urgent care clinic.

There, a rapid Covid-19 test was negative, as were evaluations for strep, influenza and appendicitis. Ms. Barillas said she was told, “It was just like a stomach flu.”

But the next day, Mayson had swollen eyes and lips with red blisters. “He started developing really bad body aches and he couldn’t walk anymore,” she said. She took him to an emergency room, which transferred him to Children’s National Hospital, where doctors said he exhibited cardiogenic shock.

“It was very scary,” Ms. Barillas said. “I’d never heard of this syndrome before.”

Mayson spent eight days in the hospital, four in the I.C.U. Since leaving, he has seen a hematologist, a rheumatologist and a cardiologist and is on blood thinners for now. The hardest part, said Mayson, a star local soccer player, is being temporarily sidelined from sports, as doctors advise for most patients for several months.

“It was very shocking for everybody in the community: ‘Wow, how did this happen to someone very healthy?’” Ms. Barillas said.

At a memorial service on Feb. 5, Braden Wilson was remembered as a kindhearted, creative teenager who loved filmmaking and fashion. His color-splashed oil paintings were displayed.

His mother read a poem he wrote that hangs on the refrigerator of his grandparents, Fabian and Joe Wilson, with whom he was close: “Hold fast to dreams/ for if dreams create/ life is a beautiful canvas/ a masterpiece painted great.”

Braden at his eighth-grade graduation with his grandparents, Fabian and Joe Wilson, with whom he was close.Credit…via Amanda Wilson

It’s unclear why the syndrome hit Braden so hard. Ms. Wilson said he did not have serious health issues. She said he was overweight but active, swimming three times a week and taking dance and yoga at his arts-and-science high school.

Symptoms started New Year’s Eve, when he began vomiting and spiking a fever. Ms. Wilson took him to an emergency room, where he tested positive for the coronavirus, received treatment that included a new monoclonal antibody drug and was sent home.

But his fever persisted and two days later, he developed diarrhea and his lips and fingers turned blue. Ms. Wilson called 911. When paramedics arrived, she said, he was “lying in his bed, like almost lifeless.”

At the hospital, he was hooked to a ventilator and transferred to Children’s Hospital Los Angeles, which like several hospitals has established a MIS-C clinic with various specialists.

“Braden was one of our most ill patients,” said Dr. Jacqueline Szmuszkovicz, a pediatric cardiologist there.

Doctors placed him on the heart-lung bypass machine, put him on dialysis and performed a heart procedure to relieve pressure. “He had what we would term severe multisystem organ failure: his lungs, his heart, his kidneys,” Dr. Szmuszkovicz said.

Through tears, Ms. Wilson said that after a few days, Braden began bleeding from his mouth, eyes and nose, and doctors ultimately could not detect brain activity. “I asked them specifically: ‘Is there any chance for him to recover from this?’” she recounted. “And they said no.”

Family members FaceTimed to say goodbye before life support was withdrawn. Ms. Wilson gave consent for doctors to take blood samples from his body for research studies.

Ms. Wilson had never written poetry before, but since Braden’s death, it has spilled out of her.

“Now your heart no longer beats / and I can’t hold you in my arms,” reads one. “But I remember back to those days / When my womb protected you from harm/ You lived a life of beauty/ of laughter, and of grace/ I hold you now inside my heart / We’ll always share that space.”

Pandemic Lessons in Improving the Medical System

Personal Health

Pandemic Lessons in Improving the Medical System

The pandemic may prompt American medicine to become less expensive, more efficient and more effective at protecting people’s health.

Credit…Gracia Lam
Jane E. Brody

  • Feb. 8, 2021, 5:00 a.m. ET

If there is a silver lining to the devastation wrought by the coronavirus pandemic, it likely lies in the glaring inadequacies and inefficiencies it exposed that are inherent in traditional American medicine. At the same time, it suggests ways to improve medical practice that can ultimately give us more bang for our health care buck.

The Biden administration currently faces overwhelming challenges to stifle Covid-related disease and deaths, responsibly regrow the economy and curb the environmental and dollar costs of climate change. But as the new president and his team strive to get a handle on these critical issues, they might also confront the myriad failings and needed improvements to health care exposed by the pandemic. We’ve paid too high a price for wasteful procedures and inconsistent medical care delivery in this country. And too many people paid with their lives as a result.

Dr. Robert Steinbrook, an editor at JAMA Internal Medicine, said in an interview, “The pandemic exposed serious vulnerabilities in our health care and created opportunities to solve problems for the long term.”

Although the pandemic prompted many people to miss or delay medical care that sometimes resulted in more serious disease and more costly treatment, it also suggested steps American medicine can take to become less expensive, more efficient and more effective at protecting people’s health.

Exhibit No. 1: Half a century of evidence has documented the health-saving, lifesaving and cost-saving benefits of preventive medicine, yet this country has retained a chaotic, penny-wise-and-pound-foolish medical system that too often puts the treatment cart before the health-promoting horse.

As many experts have told me during decades of medical reporting, we really don’t have health care in this country; we have sickness care. We’re not getting more, we’re simply paying more. The United States spends 25 percent more per person on medical care than any other highly developed country and gets less benefit from it. And the care we get leaves us shamefully behind other developed countries in important health metrics, like maternal and infant mortality and healthy longevity.

“Our system is set up to produce a lot of health care but not necessarily a lot of health,” said Dr. Amol S. Navathe, a health economist at the University of Pennsylvania.

Even the routine annual “wellness visits” covered by Medicare are of minimal value for healthy adults and often result in a cascade of follow-up tests that yield little but cost plenty.

Dr. William H. Shrank of Humana, a national health insurance company, and lead author of a report on waste in the current health care system, said, “We’ve just been through a natural experiment that we can learn from.” Our yearlong battle with a deadly virus suggests ways to improve how medicine is practiced and utilized in the United States to foster better health for its inhabitants.

One of the most dramatic examples was the abrupt substitution of telemedicine for in-person visits to the doctor’s office. Although telemedicine technology is decades old, the pandemic demonstrated how convenient and effective it can be for many routine medical problems, Dr. Navathe said.

Telemedicine is more efficient and often just as effective as an office visit. It saves time and effort for patients, especially those with limited mobility or who live in remote places. It lowers administrative costs for doctors and leaves more room in office schedules for patients whose care requires in-person visits.

Even more important, the pandemic could force a reckoning with the environmental and behavioral issues that result increasingly in prominent health risks in this country. We need to stop blaming genetics for every ailment and focus more on preventable causes of poor health like a bad diet and inactivity.

Consider, for example, the health status of those who have been most vulnerable to sickness and death from Covid-19. Aside from advanced age, about which we can do nothing, it’s been people with conditions that are often largely preventable: obesity, Type 2 diabetes, high blood pressure, coronary artery disease and smoking. Yet most physicians are unable to influence the behaviors that foster these health-robbing conditions.

“Many people need help to make better choices for themselves,” Dr. Navathe said. But the professionals who could be most helpful, like dietitians, physical trainers and behavioral counselors, are rarely covered by health insurance. The time is long overdue for Medicare and Medicaid, along with private insurers, to broaden their coverage, which can save both health and money in the long run.

Policy wonks should also pay more attention to widespread environmental risks to health. Too many Americans live in areas where healthful food is limited and prohibitively expensive and where the built environment offers little or no opportunity to exercise safely.

Individuals, too, have a role to play. The pandemic has fostered “an opportunity for patients to take on a more active role in their care,” Dr. Shrank said in an interview.

Covid-based limitations gave prospective patients a chance to consider what procedures they really needed. Most elective surgeries were put on hold when hospitals and medical personnel were overwhelmed with the challenges of caring for a tsunami of patients infected with a deadly virus.

Dr. Shrank suggested that people ask themselves, “How did you do without the procedure?” Maybe you didn’t really need it, at least not now. Maybe instead of costly surgery for a bad back or bum knee, physical therapy, home exercises or self-administered topical remedies could provide enough relief to permit desired activities.

Does every ache and pain require a doctor visit? Short of a catastrophic sign like crushing chest pain or unexplained bleeding, my approach is to wait a week or two to see if a new symptom resolves without medical intervention. I awoke one January morning with pain in my right wrist and forearm so intense I couldn’t brush my teeth. Perhaps I did too much crocheting or slept on it wrong. Ice didn’t help, but I applied an anti-inflammatory ointment, took two naproxen, wrapped my wrist in a brace from the local pharmacy and refrained from crocheting for two days, by which time the pain had resolved.

When professional health care is needed, new approaches have become more acceptable during the pandemic, Dr. Shrank said. Emergency room visits and hospital admissions declined precipitously (though not always wisely by people with symptoms of a heart attack). Noting that many patients can be treated effectively at home by a visiting nurse, Dr. Shrank said, “No one wants to go to the hospital or a rehab facility if there’s a good alternative.”

Filing Suit for ‘Wrongful Life’

the new old age

Filing Suit for ‘Wrongful Life’

More Americans are writing end-of-life instructions as the pandemic renders such decisions less abstract. But are medical providers listening?

When Elaine Greenberg’s husband, Gerald, was diagnosed with early-onset Alzheimer’s, his specific advance directive — comfort measures only — went unheeded at the hospital where he was treated.
When Elaine Greenberg’s husband, Gerald, was diagnosed with early-onset Alzheimer’s, his specific advance directive — comfort measures only — went unheeded at the hospital where he was treated.Credit…Jackie Molloy for The New York Times

  • Jan. 22, 2021, 10:31 a.m. ET

Gerald and Elaine Greenberg married in 1976, as dental students. They practiced on Long Island and in Manhattan and raised two sons. Then in 2010, she noticed that her husband, the math whiz, was having trouble calculating tips in restaurants. “He just didn’t seem as sharp,” she said.

The devastating diagnosis from a neurologist: early-onset Alzheimer’s disease.

“We knew what could be ahead for him,” Elaine Greenberg said. “He didn’t want to lie there with tubes and diapers. That’s not how he wanted to end his life.”

Together, they called a lawyer and drew up advance directives in 2011. “We gave it a lot of thought,” she said. His directive was very specific: If he became terminally ill, permanently unconscious or seriously and irreversibly brain damaged, he wanted comfort measures only. No cardiac resuscitation or mechanical respiration. No tube feeding. No antibiotics.

Gerald Greenberg died in 2016 at Montefiore New Rochelle Hospital in Westchester County — and a recent lawsuit brought by his widow charges that when he was unresponsive and near death from sepsis, the hospital and an attending physician there failed to follow his directive.

The suit alleges that they also disregarded a New York State MOLST — medical orders for life-sustaining treatment — form and his spouse’s explicit instructions to a doctor who called to seek her guidance.

Medical records show that her husband received antibiotics and other unwanted treatments and tests. The suit charges that he survived for about a month in the unresponsive state that he had sought to avoid. (A Montefiore spokesman said the hospital could not comment, given ongoing litigation.)

“They made the end of his life horrible and painful and humiliating,” Dr. Greenberg said. “What’s the sense of having a living will if it’s not honored?”

Lawsuits charging negligence or malpractice by hospitals and doctors typically claim that they have failed to save patients’ lives. More recently, though, some families have sued if providers failed to heed patients’ documented wishes and prevented death from occurring.

“In the past, people have said, ‘How have we harmed you if we kept you alive?’” said Thaddeus Pope, a professor at the Mitchell Hamline School of Law in St. Paul, Minn., who follows end-of-life legal cases. “Now, courts have said this is a compensable injury.”

The campaign to persuade people to document end-of-life instructions goes back decades, but it remains an uphill battle. A 2017 analysis of 150 studies, involving nearly 800,000 Americans, found that among those over 65, only 45.6 percent had completed an advance directive, including barely half of nursing home residents.

But recent evidence suggests that those proportions have climbed during the coronavirus pandemic. The crisis has made such questions less abstract and the need to honor documents more urgent.

Dr. Greenberg with Gerald Greenberg and their first grandchild in 2016.
Dr. Greenberg with Gerald Greenberg and their first grandchild in 2016.Credit…via Elaine Greenberg

Patients themselves may bear some responsibility for mix-ups. Advance directives go astray, get locked in desk drawers, become so outdated that designated decision makers have died. Or they use language like “no heroic measures,” so vague that “it’s hard for doctors to comply with,” Mr. Pope said.

The state MOLST or POLST (portable orders for life-sustaining treatment) forms strive to make the decisions concrete by providing detailed documentation of patients’ wishes and functioning as physicians’ orders. Studies in Oregon and West Virginia have demonstrated the forms’ effectiveness, but as several of these cases show, that is not universal.

Sometimes — nobody has tracked how often — institutions overlook the documents in patients’ charts or ignore conversations with health care proxies. Doctors who doubt that a patient actually prefers to die may override the instructions.

“Their attitude is, ‘Nobody was hurt,’” said Gerald Grunsfield, the lawyer representing Dr. Greenberg. “But there was physical hurt, emotional hurt, a lot of hurt.”

In an interview four years ago, Mr. Pope noted that nobody at that point had received compensation from any “wrongful life” suit. Since then, several plaintiffs have received hefty payments, and courts have weighed in as well.

In Georgia, Jacqueline Alicea won a $1 million settlement from Doctors Hospital of Augusta and a surgeon there (from their insurers, more accurately). They had placed her 91-year-old grandmother on a ventilator, disregarding both Ms. Alicea’s instructions as her grandmother’s health care proxy and her grandmother’s advance directive. That meant Ms. Alicea had to eventually order that life support be removed, a wrenching decision.

Settlement amounts often remain confidential, but “we wanted this settlement to be shouted from the mountaintops,” her lawyer, Harry Revell, said. “We wanted it to have a deterrent effect on health care providers who think this isn’t important.”

The Alicea case, already being cited in other lawsuits, may have an impact because after the trial court denied a motion to dismiss it, the state’s Court of Appeals and its Supreme Court both ruled that the suit could proceed. The parties settled on the eve of a trial in 2017.

In Montana, a jury delivered what is believed to be the first verdict in a wrongful life case, awarding $209,000 in medical costs and $200,000 for “mental and physical pain and suffering” to the estate of Rodney Knoepfle in 2019.

Debilitated by many illnesses, Mr. Knoepfle had a do-not-resuscitate order and a POLST form in his records at St. Peter’s Health, Helena’s largest hospital. “He’d suffered more pain than anyone should in a lifetime and was comfortable with going, if it was his time to go,” said Ben Snipes, one of his lawyers.

But a medical team resuscitated Mr. Knoepfle — twice. Tethered to an oxygen tank, he lived another two years before dying at age 69. “The last few months, he was almost incoherent with pain, living in a hospital bed, getting morphine crushed into his pudding,” Mr. Snipes said.

Beatrice Weisman, 83, had been hospitalized after a stroke in 2013 when doctors at Maryland General Hospital found her turning blue and resuscitated her, an action that her advance directive and MOLST form specifically prohibited.

The Weisman family sued and in 2017 received a “satisfactory” sum through mediation, said Robert Schulte, their lawyer. He could not divulge the amount but said it had helped pay for seven years of round-the-clock care, until Ms. Weisman died last October.

The Greenbergs on their wedding day in 1976.Credit…Jackie Molloy for The New York Times

A California case developed differently. Dick Magney had opted for palliative care, and his doctors were complying, until someone reported potential neglect to Humboldt County’s adult protective services agency. The county filed a petition to take over his health care, removing his wife as his decision maker, and ordered that Mr. Magney receive antibiotics he had earlier refused. At one point, the county won temporary conservatorship.

“It just led to him suffering longer,” said Allison Jackson, the lawyer representing Mr. Magney’s wife. Mr. Magney died in 2015.

A state appellate court ruled that the petition to remove Mr. Magney’s wife had been fraudulent. She eventually won more than $200,000 in reimbursement for lawyers’ fees and pursued a federal civil rights complaint, leading to a $1 million settlement from the county. Two lawyers representing the county now face disciplinary charges from the California state bar.

Such awards and rulings, and news coverage, have led more families to seek legal remedies and have encouraged lawyers to take such cases, said Mr. Pope, who is a consultant to the Montana lawyers and a testifying expert witness in the upcoming California disciplinary hearings.

Now similar suits are pending in Georgia, Maryland and New Jersey, in addition to two malpractice cases that Mr. Grunsfeld has brought against Montefiore in New York.

Lawyers for Montefiore have moved to dismiss the Greenberg suit; even if the court allows it to go forward, resolution could take years. But Dr. Greenberg and her sons are in it for the long haul, she said.

During the month her husband survived, after his directive would have permitted him to die, he lay unconscious, diapered, in restraints and moaning in pain, she recalled.

“He tried to make choices, and his choices weren’t respected,” Dr. Greenberg said. “I don’t want anyone else to go through what we went through.”

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Pressure Grows for States to Open Vaccines to More Groups of People

Pressure Grows for States to Open Vaccines to More Groups of People

Some states are already expanding eligibility to people 65 and over, even though millions of people the C.D.C. recommends go first — health care workers and nursing home residents — have yet to get shots.

Gov. Ron DeSantis of Florida, right, during vaccinations at the John Knox Village nursing home in Pompano Beach, Fla., last month.
Gov. Ron DeSantis of Florida, right, during vaccinations at the John Knox Village nursing home in Pompano Beach, Fla., last month.Credit…Marta Lavandier/Associated Press
Abby Goodnough

  • Jan. 9, 2021, 12:00 p.m. ET

Just weeks into the country’s coronavirus vaccination effort, states have begun broadening access to the shots faster than planned, amid tremendous public demand and intense criticism about the pace of the rollout.

Some public health officials worry that doing so could bring even more chaos to the complex operation and increase the likelihood that some of the highest-risk Americans will be skipped over. But the debate over how soon to expand eligibility is intensifying as deaths from the virus continue to surge, hospitals are overwhelmed with critically ill patients and millions of vaccine doses delivered last month remain in freezers.

Governors are under enormous pressure from their constituents — especially older people, who vote in great numbers and face the highest risk of dying from the virus — to get the doses they receive into arms swiftly. President-elect Joseph R. Biden Jr.’s decision, announced Friday, to release nearly all available doses to the states when he takes office on Jan. 20, rather than holding half to guarantee each recipient gets a booster shot a few weeks after the first, is likely to add to that pressure.

Some states, including Florida, Louisiana and Texas, have already expanded who is eligible to get a vaccine now, even though many people in the first priority group recommended by the Centers for Disease Control and Prevention — the nation’s 21 million health care workers and three million residents of nursing homes and other long-term care facilities — have not yet received a shot.

On Friday afternoon, New York became the latest state to do so, announcing that it would allow people 75 and over and certain essential workers to start receiving a vaccine on Monday.

But reaching a wider swath of the population requires much more money than states have received for the task, many health officials say, and more time to fine-tune systems for moving surplus vaccine around quickly, to increase the number of vaccination sites and people who give the shots, and to establish reliable appointment systems to prevent endless lines and waits.

Some states’ expansions have led to frantic and often futile efforts by older people to get vaccinated. After Florida opened up vaccinations to anyone 65 and older late last month, the demand was so great that new online registration portals quickly overloaded and crashed, people spent hours on the phone trying to secure appointments and others waited overnight at scattered pop-up sites offering shots on a first-come first-served basis.

Similar scenes have played out in parts of Texas, Tennessee and a handful of other states.

Still, with C.D.C. data suggesting that only about a third of the doses distributed so far have been used, Alex M. Azar II, the health and human services secretary, told reporters this past week: “It would be much better to move quickly and end up vaccinating some lower-priority people than to let vaccines sit around while states try to micromanage this process. Faster administration would save lives right now, which means we cannot let the perfect be the enemy of the good.”

Boxes of Moderna’s vaccine were prepared for shipment at a distribution center in Olive Branch, Miss., last month.
Boxes of Moderna’s vaccine were prepared for shipment at a distribution center in Olive Branch, Miss., last month.Credit…Pool photo by Paul Sancya

The C.D.C. guidelines were drawn up by an independent committee of medical and public health experts that advises the agency on immunization practices; it deliberated for months about who should get vaccinated initially, while supplies were still very limited. The committee weighed scientific evidence about who is most at risk of getting very sick or dying from Covid-19, as well as ethical questions, such as how best to ensure equal access among different races and socioeconomic groups.

Although the committee’s recommendations are nonbinding, states usually follow them; in this case, the committee suggests that states might consider expanding to additional priority groups “when demand in the current phase appears to have been met,” “when supply of authorized vaccine increases substantially” or “when vaccine supply within a certain location is in danger of going unused.”

Dr. Kevin Ault, an obstetrician at the University of Kansas Medical Center who serves on the advisory committee that came up with the C.D.C. guidelines, said that it was reasonable for states to start vaccinating new groups before finishing others, but that they should be careful about exacerbating inequities and biting off more than they can chew.

“Obviously if you’re going to vaccinate that group you need to have a well-thought-out plan in hand,” he said, referring to the over-65 population. “Having people camping out for vaccine is less than ideal, I would say.”

He added, “We put a lot of thought and effort into our guidelines, and I think they are good.”

After the first vaccines were given in mid-December, a dichotomy emerged between governors who were adhering precisely to the guidelines and others who moved quickly to populations beyond health care workers and nursing home residents.

Until Friday, Gov. Andrew M. Cuomo of New York, a Democrat, had threatened to penalize hospitals that provided shots to people who are not health care workers. By contrast, Gov. Ron DeSantis of Florida, a Republican, traveled to retirement communities around his state to emphasize the importance of getting people 65 and older, who number more than five million there, immunized fast.

“In Florida we’ve got to put our parents and grandparents first,” Mr. DeSantis said at The Villages, the nation’s largest retirement community, just before Christmas.

Gov. Andrew Cuomo of New YorkCredit…Andrew Kelly/Reuters
Gov. Mike DeWine of OhioCredit…Tony Dejak/Associated Press
Gov. Greg Abbott of TexasCredit…Eric Gay/Associated Press
Gov. Larry Hogan of MarylandCredit…Jonathan Ernst/Reuters

Decisions on how soon to expand eligibility for the shots have not fallen neatly along partisan lines.

Covid-19 Vaccines ›

Answers to Your Vaccine Questions

While the exact order of vaccine recipients may vary by state, most will likely put medical workers and residents of long-term care facilities first. If you want to understand how this decision is getting made, this article will help.

Life will return to normal only when society as a whole gains enough protection against the coronavirus. Once countries authorize a vaccine, they’ll only be able to vaccinate a few percent of their citizens at most in the first couple months. The unvaccinated majority will still remain vulnerable to getting infected. A growing number of coronavirus vaccines are showing robust protection against becoming sick. But it’s also possible for people to spread the virus without even knowing they’re infected because they experience only mild symptoms or none at all. Scientists don’t yet know if the vaccines also block the transmission of the coronavirus. So for the time being, even vaccinated people will need to wear masks, avoid indoor crowds, and so on. Once enough people get vaccinated, it will become very difficult for the coronavirus to find vulnerable people to infect. Depending on how quickly we as a society achieve that goal, life might start approaching something like normal by the fall 2021.

Yes, but not forever. The two vaccines that will potentially get authorized this month clearly protect people from getting sick with Covid-19. But the clinical trials that delivered these results were not designed to determine whether vaccinated people could still spread the coronavirus without developing symptoms. That remains a possibility. We know that people who are naturally infected by the coronavirus can spread it while they’re not experiencing any cough or other symptoms. Researchers will be intensely studying this question as the vaccines roll out. In the meantime, even vaccinated people will need to think of themselves as possible spreaders.

The Pfizer and BioNTech vaccine is delivered as a shot in the arm, like other typical vaccines. The injection won’t be any different from ones you’ve gotten before. Tens of thousands of people have already received the vaccines, and none of them have reported any serious health problems. But some of them have felt short-lived discomfort, including aches and flu-like symptoms that typically last a day. It’s possible that people may need to plan to take a day off work or school after the second shot. While these experiences aren’t pleasant, they are a good sign: they are the result of your own immune system encountering the vaccine and mounting a potent response that will provide long-lasting immunity.

No. The vaccines from Moderna and Pfizer use a genetic molecule to prime the immune system. That molecule, known as mRNA, is eventually destroyed by the body. The mRNA is packaged in an oily bubble that can fuse to a cell, allowing the molecule to slip in. The cell uses the mRNA to make proteins from the coronavirus, which can stimulate the immune system. At any moment, each of our cells may contain hundreds of thousands of mRNA molecules, which they produce in order to make proteins of their own. Once those proteins are made, our cells then shred the mRNA with special enzymes. The mRNA molecules our cells make can only survive a matter of minutes. The mRNA in vaccines is engineered to withstand the cell’s enzymes a bit longer, so that the cells can make extra virus proteins and prompt a stronger immune response. But the mRNA can only last for a few days at most before they are destroyed.

Gov. Larry Hogan of Maryland, a Republican, announced Tuesday that he would immediately switch to what he called the “Southwest Airlines model” for vaccine allocation, referring to the airline’s open seating policy. “We’re no longer going to be waiting for all the members of a particular priority group to be completed,” he said, “before we move on to begin the next group in line.”

Gov. Mike DeWine of Ohio, a Republican, urged patience in a news briefing Tuesday as he declined to estimate when the state would start vaccinating people beyond the first priority group, known as “1a.”

“We’re asking every health department, ‘Don’t go outside 1a, stay within your lane,’” he said, adding about the vaccines, “This is a scarce commodity.”

By Thursday Mr. DeWine had set a date for people 80 and older to start getting the vaccine — Jan. 19 — and said he would phase in everyone 65 and older, as well as teachers, by Feb. 8.

The reasons so many doses received by states have not yet been administered to the first priority group are manifold. The fact that vaccination began around Christmas, when many hospital employees were taking vacation, slowed things. More health care workers are refusing to get the vaccine than many of their employers expected, and some hospitals and clinics received more doses than they needed but felt constrained by state rules from giving them to people outside the first priority groups. Some initially worried they could not even offer leftover doses in open vials to people in lower priority groups and let them go to waste.

Frontline health care workers and people age 65 and older waited to be vaccinated at a sports complex in Fort Myers, Fla., last month.Credit…Octavio Jones for The New York Times

And federal funding for vaccination efforts has been slow to reach states and localities: They got only $350 million through the end of last year, a little more than $1 per resident of the country. The economic rescue package that Congress passed in December included $8 billion for vaccine distribution that state health officials had long sought, but the first tranche of it, about $3 billion, is only now starting to be sent out.

“There was great funding in the development of these products, great funding in the infrastructure to ship them and get them out,” said Dr. Steven Stack, commissioner of the Kentucky Department for Public Health. “But then there was no funding provided of meaning for administering the vaccine, which is the last mile of this journey.”

The C.D.C. has recommended that a “1b” group consisting of people 75 and older and certain essential workers, including teachers, corrections officers and grocery store employees, be vaccinated next. The second group is much larger, about 50 million people. And the third recommended priority group — people 65 to 74, anyone 16 and older with high-risk medical conditions, and essential workers not already reached — numbers almost 130 million.

Pfizer and Moderna have pledged to deliver enough vaccine doses for 100 million people to each get the two necessary shots by the end of March, and many more in the second quarter. Several other vaccine candidates are far along in the pipeline, and if approved for emergency use here could help ramp up distribution more quickly.

The C.D.C. committee initially considered recommending that a wide range of essential workers get vaccinated before older Americans. Its rationale was that many essential workers are low-wage people of color, who have been hit disproportionately hard by the virus and had limited access to good health care. That sparked a backlash, and several governors, including Mr. DeSantis, quickly made clear they would cater to older people first.

Alex M. Azar, the health and human services secretary, left, and Surgeon General Jerome Adams, right, during a vaccination at George Washington University Hospital on Dec. 14.Credit…Pool photo by Jacquelyn Martin-Pool

Dr. Mark McClellan, who formerly headed the F.D.A. and now runs Duke University’s health policy center, said that while pushing ahead to vaccinate older people and other particularly vulnerable groups would accelerate the overall effort, “we’re going to be missing a lot of higher-risk individuals along the way.”

“I do worry about that becoming uneven in terms of access,” he said during a press briefing, “with lower-income groups, minority groups maybe in a tougher position if we don’t make it very easy for people in these high-risk groups to get vaccinated.”

Dr. Marcus Plescia, the chief medical officer for the Association of State and Territorial Health Officials, said he was surprised to hear federal officials like Mr. Azar and Dr. Jerome Adams, the surgeon general, advocate expanding vaccine access so broadly so soon.

“We didn’t come up with priority populations to slow things down, but because we knew there would be limited numbers of doses,” Dr. Plescia said. “If we try to do this in an equitable, fair way, it’s not going to be as fast as if our only goal is to get vaccine into as many arms as possible.”

Whether or not they are widening access now, governors are ramping up pressure on hospitals to use their allocated doses more quickly. Mr. Cuomo threatened to fine those that did not use their initial allocations by the end of this past week and not send them any more.

Mr. Hogan warned hospitals this past week, “Either use the doses that have been allocated to you or they will be directed to another facility or provider.”

A Night in the Hospital, From Both Ends of the Stethoscope

Doctors

A Night in the Hospital, From Both Ends of the Stethoscope

As a doctor writing about medical errors, I saw potential risks lurking everywhere when my daughter was hospitalized with appendicitis.

Credit…Xiao Hua Yang

  • Jan. 5, 2021, 5:00 a.m. ET

Just as the first coronavirus reports were emerging from China in late 2019, the medical world was observing the 20th anniversary of “To Err is Human,” the seminal report from the Institute of Medicine that opened our eyes to the extent of medical error. The news media jumped on the popular aviation metaphor, that the number of Americans dying each year as a result of medical error was the equivalent of a jumbo jet crashing every day. Those numbers remain difficult to accurately quantitate, but we know that they are not small.

The conversation has now been broadened to include all preventable harms to patients, even ones that are not errors per se. As I set about writing a book on medical error, I wanted to see both sides of the story. I drew upon my own experiences as a physician but also interviewed patients and families to get the view from the other side. But I soon realized that the distinction between those two “sides” was rather fluid.

Midway through writing the book, my teenage daughter experienced a stomachache. My kids know that fevers, colds, coughs and sprained ankles do not get my pulse up, and that “if you’re not bleeding out or in cardiac arrest” they should seek medical sympathy from their computer programmer father. They often accuse me of ignoring their medical complaints altogether, but as a primary care doctor I know that most aches and pains of daily life get better on their own and are best left unobsessed about.

But this time I became suspicious of my daughter’s inability to find a comfortable position and so pulled out my stethoscope. When I heard complete silence instead of gurgling bowel sounds, I shuttled us straight to my hospital’s E.R. My correct diagnosis of appendicitis modestly redeemed me in my daughter’s eyes, though she was mortified that I chatted it up with colleagues.

Surgery was planned for the next morning, so I stayed in her hospital room overnight, reading the stack of journal articles I’d been reviewing for my book. Hospitals have always been a comfortable setting for me, but the familiar ward suddenly felt apocalyptic, with medical errors and harms lurking everywhere. The population of a midsize city traipsed in and out of my daughter’s room that night, each armed with potentially dangerous things to administer or extricate. And even if they were all batting 99 percent, the denominator of “things” was so enormous that some amount of error was all but guaranteed.

When the pediatric resident arrived at 3 a.m. to assess my daughter — after she’d been evaluated by the triage nurse, the E.R. resident, the E.R. attending, the surgery resident, the surgery chief, and then the surgery attending — I put my foot down.

“She’s on pain meds now,” I hissed, “so you won’t find any abdominal tenderness. And the ultrasound already showed an inflamed appendix.” The resident eyed me warily, clearly calculating the risk/benefit ratio of pressing her case with an ornery, sleep-deprived parent.

“But if you are going to wake her up, jab on her belly, and then come to the grand conclusion that she has appendicitis and needs surgery, forget about it,” I snapped. The resident backed off, and I flopped back into my chair to read yet another cheery article about medical calamities.

The surgery team came by with another option: giving just IV antibiotics, with no operation. With antibiotics alone, they said, there was a 50 percent chance of appendicitis recurring. Which meant that for half the patients, surgery could be avoided altogether. But we had to decide right away so they could know whether to book the O.R.

I asked the surgery resident how strong the data were. I wasn’t going to make a half-baked decision just because he was time-pressed to set the O.R. schedule. He groaned mightily but stood by while I searched up some studies. The data were preliminary but seemed encouraging.

Just getting a flu shot reduces my daughter to a sobbing mess huddled in my lap even though she’s a head taller than me. So I was sure she’d jump at the chance to avoid surgery.

It turned out that she had an utterly different take. The experience of getting an IV in the E.R. was so miserable that she never wanted to repeat it. The definitiveness of surgery was much more appealing than the possibility — however small — of going through this again in the future.

The next morning, that dangly tail of residual colon was successfully snipped. When my daughter was coming out of anesthesia, I asked her if she’d like some Toradol, the pain medication that the nurse was offering. “Tortellini?” she mumbled foggily. “Are we having tortellini?”

I was impressed, yet again, by the marvels of modern medicine, knowing full well that had this taken place a century earlier I might have been digging a grave for my child that evening instead of digging through the freezer for tortellini.

As a physician, I’m stunningly proud of the medical care our hospitals can provide. But during our stay as civilians, every aspect felt like harm waiting to happen. I’m sure I ruffled a few feathers with all of my questions, but addressing family members’ worries is part of the job — even if the family member isn’t a physician, and isn’t on the faculty of that institution, and doesn’t coincidentally happen to be writing a book about medical error while sitting at the bedside.

It’s not comfortable being the squeaky wheel. Being on guard for my daughter 24/7 was frankly exhausting. But once you are on the patient side of the stethoscope, everything looks like a minefield.

Of course, the burden should not have to be on the patient or family for ensuring safe medical care. That is the job of the health care system. But as we well know, the system has not yet achieved pristine perfection, so it behooves patients and families to stay engaged as much as possible.

The Covid-19 pandemic has surely demonstrated the professionalism of health care workers. But even the most dedicated staff need extra sets of eyes on the ground.

My advice to patients is to be polite but persistent. Don’t let unspoken annoyance deter you. Offer appreciation for the things that are going well — and acknowledge that everyone is working hard! — but plow forward. At the very least, ask what each medication is and why you are getting it.

And if you are too nauseated or too sleepy or too feverish, don’t rack yourself with guilt because you are not interrogating every staff member. Get the rest you need. Before you doze off, though, use some leftover surgical tape to affix a sign across your chest that says “Wash your hands!”

The onus is on the medical system to make health care as safe as possible. But patients and families shouldn’t feel shy about taking a forthright role. Keeping those jumbo jets from falling out of the sky is a team effort, and the team includes the folks on both ends of the stethoscope.

Dr. Danielle Ofri practices at Bellevue Hospital in New York City and is a clinical professor of medicine at New York University. Her newest book is “When We Do Harm: A Doctor Confronts Medical Error.”