Medical reversals about menopause hormones, knee surgery and vitamins over the years have left patients confused. But doctors say these pivots often are good medicine.
At the height of the covid-19 pandemic, people often relied on telemedicine for doctor visits. Now, insurers are betting that some patients liked it enough to embrace new types of health coverage that encourages video visits — or outright insists on them.
Priority Health in Michigan, for example, offers coverage requiring online visits first for nonemergency primary care. Harvard Pilgrim Health Care, selling to employers in Connecticut, Maine and New Hampshire, has a similar plan.
“I would describe them as virtual first, a true telehealth primary care physician replacement product,” said Carrie Kincaid, vice president of individual markets at Priority Health, which launched its plans in January as an addition to more traditional Affordable Care Act offerings.
The often lower-premium offerings capitalize on the new familiarity and convenience of online routine care.But skeptics see a downside: the risk of overlooking something important.
“There’s a gestalt of seeing a patient and knowing something is not right, such as maybe picking up early on that they have Parkinson’s,” or listening to their heart and discovering a murmur, said Dr. David Anderson, a cardiologist affiliated with Stanford Health Care in Oakland, California. He said online medicine is a great tool for follow-up visits with established patients but is not optimal for an initial exam.
When enrolling in one of the new plans, patients are encouraged to select an online doctor, who then serves as the patient’s first point of contact for most primary care services and can make referrals for in-person care with an in-network physician, if needed. It’s possible patients never meet their online doctor in person.
Many insurers offering virtual-first plans hire outside firms to provide medical staff. The physicians may hold licenses in several states and not be located nearby. Insurers say participating online doctors can access patients’ medical information and test results through the insurers’ electronic medical records system or those of the third-party online staffing firm. What might prove tricky, experts warn, is transferring information from physicians, clinics or hospitals outside of an insurer’s network. Sharing patient information via EMRs is challenging even for doctors operating under traditional insurance plans with in-person visits — especially moving data between different health systems or specialty practices.
The virtual-first concept was so new that Priority Health called those enrolling this year to ensure they understood how it worked. “If people were more comfortable with brick-and-mortar, they should choose other options,” Kincaid said, adding that the plans have drawn 5,000 enrollees since January, a number she hopes will double next year.
Other versions of telehealth plans are available, offered by big names such as Humana, Kaiser Permanente, Oscar and UnitedHealthcare. Some emphasize but don’t require that primary care starts online. Some are aimed directly at consumers. Others are sold to employers.
Oscar Virtual Care health plans, sold in several states including Texas, Florida and New York, allow patients to choose between online or in-person services.
“These are not virtual-only plans,” said Marianna Spanos, an Oscar vice president and general manager of its virtual care division. “You can always opt to see a more traditional provider.”
Although Kaiser Permanente uses its own in-house medical staff, most insurers rely on contracted physicians, mental health therapists and other staff members, often provided by San Francisco-based Doctor on Demand.
Doctor on Demand launched in 2013, aimed at individual consumers. Starting with a Humana contract in 2019, it has since expanded to offer staffing for several other insurers. The company, which has its own electronic medical records system, hires a range of primary care, mental health and other medical providers. Physicians must be board-certified. Pay is partly based on how many patients they see, and there is no upper limit. Some want to work part time, for example, and many work from home.
In general, virtual-first health plans may carry lower premiums or provide such financial incentives as no copays for online visits. All boast that members can get appointments quickly, sometimes within minutes. Patients with serious problems are assisted in arranging emergency help. If online physicians determine patients need a blood test, immunization or a visit with a specialist, they refer them to a local practice, clinic or specialist within the insurer’s network.
As a strategy to contain costs, think HMO 2.0.
“There’s more control over the patient interaction and where they get referred,” said Sabrina Corlette, a research professor and co-director of the Center on Health Insurance Reforms at Georgetown University.
Still, patients should be aware that some of these plans may allow a brick-and-mortar visit only if their virtual doctor, who may have never examined them in person, deems it necessary.
Skeptics note that many circumstances demand in-person care. One recent study estimated about 66% of primary care visits required it. For example, it’s impossible to check reflexes and difficult to examine tonsils for infection virtually.
Patients in some programs, including Harvard Pilgrim’s, are sent kits that can include devices like blood pressure cuffs and thermometers — though at-home medical measuring devices are often not as accurate as those used in offices. Online physicians may also ask a patient to feel for swollen lymph nodes, shine a light into their throat while on camera or take other actions to help the physician diagnose a problem.
Kincaid, at Priority Health, noted that Doctor on Demand also sets protocols on children’s wellness visits, which it says must be done in person.
“It’s important for children’s wellness visits to get accurate height and weight measures and immunizations,” Kincaid said.
When considering virtual-first plans, advocates say, patients should look closely not just at premiums but also at deductibles and copayments, which may be set at levels that discourage in-person care. Rules are varied and dizzying.
The VirtualBronze plan offered through the federal ACA marketplace in parts of Texas by Community Choice Health, for example, requires hefty patient contributions for many types of in-person visits.
Patients incur no copay for using online Doctor on Demand physicians for primary care visits or for accessing in-person preventive services as defined by the ACA, such as immunizations or cancer screenings. But for other in-person services, Community Choice’s virtual plan will cost patients out-of-pocket because they pay the cost of the care until they meet an annual $8,530 deductible.
Kaiser Permanente’s Virtual Complete plan offered to large employers carries no copay for online care. Patients can opt to see an in-person doctor three times a year for primary care if they’re willing to pay a copay. After those three visits, any additional in-person visits are subject to a deductible.
Plans sold through federal or state marketplaces and those offered by employers must meet the ACA’s requirements. That includes a range of services, from doctor visits to hospital care.
Corlette, at Georgetown, said consumers should be wary of plans that are not ACA-compliant.
She fears the advent of plans that give patients “access to online providers, but nothing else.” And that, she said, “would not be considered major medical insurance.”
Adults at high risk for cardiovascular disease may face serious side effects if they start a daily regimen of low-dose aspirin.
I hadn’t expected the tears.
My primary care doctor and I were saying goodbye after nearly 30 years together.
“You are a kind and a good person,” he told me after the physical exam, as we wished each other good luck and good health.
“I trust you completely — and always have,” I told him, my eyes overflowing.
“That means so much to me,” he responded, bowing his head.
Will I ever have another relationship like the one with this physician, who took time to ask me how I was doing each time he saw me? Who knew me from my first months as a young mother, when my thyroid went haywire, and who since oversaw all my medical concerns, both large and small?
It feels like an essential lifeline is being severed. I’ll miss him dearly.
This isn’t my story alone; many people in their 50s, 60s and 70s are similarly undergoing this kind of wrenching transition. A decade from now, at least 40% of the physician workforce will be 65 or older, according to data from the Association of American Medical Colleges. If significant numbers of doctors retire, as expected, physician shortages will swell. Earlier this year, the AAMC projected an unmet need for up to 55,200 primary care physicians and 86,700 specialists by 2033, amid the rapid growth of the elderly population.
Stress from the covid pandemic has made the outlook even worse, at least in the near term. When the Physicians Foundation, a nonprofit research organization, surveyed 2,504 doctors in May and June, 61% reported “often experiencing” burnout associated with financial and emotional strain. Two percent said they had retired because of the pandemic; another 2% had closed their practices.
Twenty-three percent of the doctors surveyed said they’d like to retire during the next year.
Baby boomers, like me, whose medical needs are intensifying even as their longtime doctors bow out of practice, are most likely to be affected.
“There’s a lot of benefit to having someone who’s known your medical history for a long time,” especially for older adults, said Dr. Janis Orlowski, AAMC’s chief health care officer. When relationships with physicians are disrupted, medical issues that need attention can be overlooked and people can become less engaged in their care, said Dr. Gary Price, president of the Physicians Foundation.
My doctor, who’s survived two bouts of cancer, didn’t mention the pandemic during our recent visit. Instead, he told me he’s turning 75 a week before he closes the practice at the end of October. Having practiced medicine for 52 years, 40 as a solo practitioner, “it’s time for me to spend more time with family,” he explained.
An intensely private man who’s averse to publicity, he didn’t want his name used for this article. I know I’m lucky to have had a doctor I could rely on with complete confidence for so long. Many people don’t have this privilege because of where they live, their insurance coverage, differences in professional competence, and other factors.
With a skeletal staff — his wife is the office manager — my doctor has been responsible for 3,000 patients, many of them for decades. One woman sobbed miserably during a recent visit, saying she couldn’t imagine starting over with another physician, he told me.
At one point, when my thyroid levels were out of control, I saw my physician monthly. After my second pregnancy, when this problem recurred, I brought the baby and her toddler brother in a double stroller into the exam room. One or the other would often cry sympathetically when he drew my blood.
I remember once asking when a medical issue I was having — the flu? a sore throat? — would resolve. He pointed upward and said, “Only Hashem knows.” A deeply religious man, he wasn’t afraid to acknowledge the body’s mysteries or the limits of medical knowledge.
“Give it a few days and see if you get better,” he frequently advised me. “Call if you get worse.”
At each visit, my doctor would open a large folder and scribble notes by hand. My file is more than 4 inches thick. He never signed up for electronic medical records. He’s not monetizing his practice by selling it. For him, medicine was never about money.
“Do you know the profit margins this hospital makes?” he asked at our last visit, knowing my interest in health care policy and finance. “And how do you think they do it? They cut costs wherever they can and keep the nursing staff as small as possible.”
Before a physical exam, he’d tell a joke — a way to defuse tension and connect with a smile. “Do you know the one about …” he’d begin before placing his fingers on my throat (where the thyroid gland is located) and squeezing hard.
Which isn’t to say that my doctor was easygoing. He wasn’t. Once, he insisted I go to the emergency room after I returned from a long trip to South Asia with a very sore leg and strange pulsing sensations in my chest. An ultrasound was done and a blood clot discovered.
The young doctors in the ER wanted to give me intravenous blood thinner and send me home with a prescription. My doctor would have nothing of it. I was to stay in the hospital overnight and be monitored every few hours, efficiency and financial considerations be damned. He was formidable and intransigent, and the younger physicians backed down.
At that last meeting, my doctor scribbled the names of two physicians on a small sheet of paper before we said our goodbyes. Both would take good care of me, he said. When I called, neither was accepting new patients. Often, I hear this from older friends: They can’t find physician practices that are taking new patients.
Price, who’s 68, went through this when his family physician announced she was retiring and met with him in January to work out who might take over his care. Price was admitted into the practice of a younger physician with a good reputation only because he asked a medical colleague to intervene on his behalf. Even then, the first available appointment was in June.
Orlowski had a similar experience two years ago when searching for a new primary care doctor for her elderly parents. “Most of the practices I contacted weren’t accepting new patients,” she told me. It took six months to find a physician willing to see her parents — again, with the help of medical colleagues.
I’m lucky. A friend of mine has a physician daughter, part of an all-women medical practice at a nearby university hospital. One of her colleagues had openings and I got on her schedule in December. My friend’s daughter recommends her highly.
Still, it will mean starting over, with all the dislocation that entails. And these transitions are hard, for patients and doctors alike.
Several weeks ago, I received a letter from my doctor, likely his last communication, which I read with a lump in my throat.
“To my beloved patients,” he wrote. “I feel so grateful for the opportunity to treat you and develop relationships with you and your families that I will always treasure. … I bid you all adieu. I hope and pray for your good health. I will miss each and every one of you and express to you my appreciation for so many wonderful years of doing what I love, caring for and helping people.”
We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.
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I knocked and entered her room. Our patient had a few more questions about her surgery.
I introduced myself.
“This isn’t the same tall guy as before,” I recalled her joking.
“They only hire tall people,” I said.
Wearing masks in every hallway and patient room, though necessary in the time of Covid-19, had stolen the familiarity of a smile.
She was in her late 50s, wearing glasses and a light blue hospital gown, sitting up in bed. She had a full head of salt and pepper hair that was more salt than pepper really. Sprawled across her beige blankets were legal pads on which she had been taking notes.
On her right was a gingham-lined picnic basket brimming with treats, Coca-Cola and Otterbein’s Cookies, a local favorite, gifts from her co-workers.
A few weeks earlier, her life had been routine. As an information technology specialist, she had been working from home,. At some point she realized she had been experiencing weakness in her right leg, and then in her right arm.
“I noticed it late, I think, because I was sitting at my desk all the time,” she said.
Her handwriting had worsened precipitously over the previous few days. “I can’t write anymore,” she said, “and when I was lifting weights my arm felt heavy and weak.”
She had gone to the emergency room, where doctors performed a CT scan of her head. On the left side, at the top of her brain, they found a “hypodensity,” a dark area that would need further work-up. A subsequent M.R.I. scan of her brain provided more clarity.
A cystic mass was invading her left paracentral lobule, part of her primary motor cortex, a one-centimeter ribbon of brain tissue packed with the millions of neurons that allow us to voluntarily control our muscles.
I asked her if she had more questions about her surgery, which was scheduled for the next day. My attending had talked previously with her about the finding on her scan and options going forward.
“I’m just wondering what the mass is,” she said. “Hopefully you won’t find anything,” she followed up quickly.
“A scan is a representation,” I said. “We can only know for sure once we look at a piece of it under a microscope, after the surgery.”
Our concern was a tumor, but the mass could also be an infection, or an inflammatory process, or another disease, I explained. As we talked more, I learned more about the source of her anxiety.
Her sister had died of a glioblastoma a few years earlier, she told me. Glioblastoma is the most common tumor that arises from brain tissue, and one of the most lethal of human cancers. Three people in every 100,000 are diagnosed with this condition every year.
She recounted the story of her sister’s diagnosis and treatment, and the misery she had gone through. Her sister, too, had a mass on the left side of her brain, for which she had elected surgery. The surgery and mass had left her weak and unable to speak. After the diagnosis of glioblastoma was confirmed, she had undergone chemotherapy and radiation therapy, the standard of care, which can extend survival a few months. She died a year later, and had never regained her old self.
“Me and my sister have everything in common,” she said. “When I heard about this mass, I said, really, we have to have that in common too?”
I smiled at her efforts to add some humor to the situation.
“I read that glioblastoma is extremely rare, so it’s unlikely I have the same thing, right?” she asked.
I explained it was rare, but possible.
“My sister wasn’t the same after surgery,” she said. “Don’t take so much out that it causes problems.”
We talked a while longer before I left for the evening.
The next morning, the chief resident and I greeted her in her room.
“I’m ready,” she said.
Her nurses brought her down to the operating room, where the surgical nurses and technicians began their rhythms, making her comfortable on the operating table, moving equipment.
The anesthesiologist skillfully intubated her. He ferried her mind to the hinterlands.
We started by cutting a narrow furrow through her hair, as she had requested, preserving as much hair as possible. Cutting the hair before making an incision is a small part of brain surgery, but it remains our most visible maneuver. If she had what her sister had and we’d cut it all, her hair might never fully grow back in time. She would forever be marked by her disease. Cutting less mattered to her.
My attending, the chief resident and I cleaned her hair and scalp, and then, using the surgical drapes, created a window where we would work.
I made an incision down to her skull with a scalpel, and we instinctively stemmed any bleeding. After folding her scalp back and exposing her skull, I made several burr holes with a drill, then connected these using a different kind of drill to complete our craniotomy, removing a disc of skull. My chief resident and I then cut and drew back the dura, the pearly lining that protects the brain. We were now staring directly at her brain.
Using surface electrodes, and tiny jolt of electricity, we determined the boundaries of her motor cortex, the no-go zone. Compromising any part of this ribbon would result in paralysis.
My attending and chief resident started dissecting between both brain hemispheres. They met the mass from its flank. It was aberrant, alien.
We sent the first piece of it to the pathologist for analysis.
They methodically resected the mass, working from within the abnormal tissue itself; better to damage the mass than to harm healthy brain tissue. They peeled it away from her brain, bit by bit. It was deliberate work.
The phone rang, interrupting the sound of buzzing electrocautery forceps and whirring suction tips. It was the pathologist.
“The specimen is consistent with glioblastoma,” her voice rang on speakerphone, to a change of tenor in the room.
Like her sister, I thought to myself.
Two years earlier, I had seen Damien Chazelle’s “First Man,” a biopic of Neil Armstrong. There was a moment in the film when the astronaut stood at the rim of a baby crater on the moon. He had spent 10 minutes at that crater, but what he did there remains a mystery. The filmmakers had suggested he left a bracelet there, a bracelet that had belonged to his daughter Karen, who had died seven years earlier, in 1962, at age 2.
Karen had succumbed to what is believed to have been diffuse intrinsic pontine glioma, a rare childhood cancer of the brainstem that shares some similarities to glioblastoma. His daughter had undergone radiation therapy, which reduces symptoms from the tumor, but only for a short while. It remains the only available treatment for this devastating disease, which today, as then, is almost universally fatal.
Humanity has planted flags on the moon, yet a moonshot for brain cancer has yet to be realized.
Diagnosis known, we gradually stopped removing more tumor. The more tumor you remove, the longer the average survival, meager though it may be. But the quest for surgical perfection sometimes comes with a cost. In the brain, where critical human functions are packed into mere millimeters of tissue, removing more tumor and possibly damaging healthy tissue risks the loss of strength, speech, vision, memory and more. In glioblastoma, tumor cells that have traveled centimeters away from the bulk of the tumor, far out of reach of any forceps, almost guarantee the cancer’s recurrence. Surgical perfection is imperfect. She wanted to preserve her strength.
We sutured the dura closed, and then plated her bone back on. With care, we closed the layers of her skin. In a short while, she was extubated, and we brought her up to our neurological intensive care unit to recover.
“I have seven years on my sister, and a lot of young people are dying these days, so I’m trying to be pragmatic,” she had said to me the day before. Bargaining.
Forty years ago, the median survival time for glioblastoma was four-and-a-half months. Since then, researchers have characterized the genetics of glioblastoma and studied various vaccines, chemotherapies, immunotherapies, cell therapies, new imaging modalities, targeted radiation therapies and innovative forms of drug delivery to treat the disease. Many steps.
The median survival time today is about 15 months. Only a small percentage of patients survive more than five years.
Defeatism is a common feeling among neurosurgeons, but you maintain resolve, for your patients, and for yourself. The next morning, our patient was in good spirits, recovering well, with good strength. We delicately shared the diagnosis with her.
“Just my luck,” she said with a smile. She seemed to be expecting it.
Some cancers in siblings can be explained by genetics. But that’s not the case for glioblastoma. As for her sister, and many others, it really was just bad luck.
Our surgical team, along with our colleagues in neuro-oncology and radiation oncology, recommended the standard treatment of chemotherapy and radiation therapy. But she declined treatment multiple times and chose palliative care.
“I don’t want to drag it out,” she said.
She died peacefully four months later, surrounded by her family, listening to “The Sound of Music,” her favorite musical.
NASHVILLE — She struggled through the night as she had so many times before, restless from sickle cell pain that felt like knives stabbing her bones. When morning broke, she wept at the edge of her hotel-room bed, her stomach wrenched in a complicated knot of anger, trepidation and hope.
It was a gray January morning, and Lisa Craig was in Nashville, three hours from her home in Knoxville, Tenn., preparing to see a sickle cell specialist she hoped could do something so many physicians had been unable to do: bring her painful disease under control.
Ms. Craig, 48, had clashed with doctors over her treatment for years. Those tensions had only increased as the medical consensus around pain treatment shifted and regulations for opioid use became more stringent. Her anguish had grown so persistent and draining that she sometimes thought she’d be better off dead.
She was willing to try just about anything to stop the deterioration of her body and mind — and her hope on this day in January 2019 rested in a Nigerian-born physician at Vanderbilt University Medical Center who had long treated the disease, which mostly afflicts people of African descent.
That morning, she slipped on a cream-colored cardigan and a necklace with a heart-shaped pendant. She played some Whitney Houston before sliding behind the wheel of her black S.U.V. Her husband, in the passenger’s seat, punched their destination into his phone’s navigation system.
“Live as if everything is a miracle,” reads a framed quote on Ms. Craig’s beige living room wall, and that’s exactly what she was hoping for.
People with sickle cell, a rare, inherited blood disorder caused by a mutation in a single gene, typically endure episodes of debilitating pain as well as chronic pain. Roughly 100,000 Americans and millions of people globally, mostly in Africa, have the disease. Red blood cells that carry oxygen become stiff and curved like crescent moons, clogging blood vessels and starving the body of oxygen.
Promising developments in gene therapy have given people with the disease hope that a cure is on the way for an illness that often causes organ failure and premature death. But the first such therapy is more than a year from regulatory approval. It will almost certainly be extremely expensive, cannot reverse the disease’s damage to tissues and organs, and may come too late for people whose bodies are so battered by the disease that they might not survive the grueling treatment.
Most people with sickle cell are searching for something far more basic: a way to prevent or manage the disease’s devastating complications — strokes, depression and, above all, pain.
That search can be rocky, as I learned following Ms. Craig over two and a half years of struggle and heartache. I joined her on doctor’s visits, shared meals with her family, parsed her medical records, sat in on a therapy session and tagged along as she ran errands around Knoxville and relaxed at home. I saw moments of anger, sadness and agony, but also determination, joy and love.
Her efforts to find relief were complicated by a national opioid epidemic and the coronavirus pandemic, as well as the challenges of navigating a medical system that often mistreats Black people like her. At the same time, doctors were changing how they treated sickle cell as emerging research suggested that narcotics could actually worsen pain.
Ms. Craig felt doctors were prone to stereotyping her as an addict cadging narcotics and didn’t believe in the extremity of her suffering.
Racist myths persist in medical care, like the idea that Black people tolerate more pain than white people. Such stereotypes have led Black patients to receive poor care, extensive research suggests. That can be especially problematic for sickle cell patients like Ms. Craig, who describe rushing to the emergency room in agony and waiting hours to be seen, only to be sent home still in pain after doctors tell them that their lab results are fine and they should not be suffering.
Biopsies can detect cancer, X-rays a broken bone. But there is no definitive clinical test to determine when a sickle cell patient is suffering a pain crisis.
“This is the essence of the problem,” said Dr. Sophie Lanzkron, the director of the Sickle Cell Center for Adults at the Johns Hopkins Hospital. “There is no objective measure of crisis. The gold standard is the patient tells you, ‘I am having a crisis.’”
The intensity of the disease as well as the subjectivity of treatment mean that a visit to a new doctor can feel like the cruelest game of roulette. And the weight of that pressure bore down on Ms. Craig as she parked at Vanderbilt and hobbled into the elevator. Would the doctor help her?
“Chest hurts,” she told her husband.
“You’ll be all right,” he assured her.
‘That was unheard-of’
The throbbing pounded the little girl’s body. It was in her arms and legs, and it often made her sob.
Lisa’s parents were baffled. Her mother gave her warm baths and body rubs, and took her to the doctor frequently. But the pain persisted.
Then one day in the late 1970s, when Lisa was about 5, her parents drove her from their home in Knoxville to the Mayo Clinic in Rochester, Minn. Doctors ran tests and discovered the cause: sickle cell disease.
At the time, widespread screening for the illness in newborns was still about a decade away. Lisa was the only person in her extended family ever to have it diagnosed.
“That was something that was unheard-of,” she said.
Her mother was often her protector, coddling her when the pain set in, while her father urged her to carry on.
Flare-ups of pain made her miss out on slumber parties, ice skating and plenty of school. But for all the restrictions, no one ever questioned whether her pain was real.
At the East Tennessee Children’s Hospital where she was treated, the rooms were decorated with ocean- or circus-themed wallpaper. Nurses gave her games and puppets and tried to make her smile.
“Pain medication was given because people believed I was in pain,” she wrote in her journal decades later.
The medicines gave her relief, but also set her body on a path complicating her treatment decades later: She needed opioid painkillers to live comfortably.
‘It’s a terrible treatment’
A crisis was brewing in society that complicated efforts to treat pain caused by sickle cell: the spread of addiction to opioids fueled in large part by reckless, even criminal marketing of the drugs by major pharmaceutical companies.
Research showed that people with sickle cell were no more likely to become addicted to opioids than other chronic pain sufferers, and that their use of narcotics had not skyrocketed as it had in the general population.
In March 2016, the Centers for Disease Control and Prevention released stringent guidelines on prescribing narcotic painkillers, though it carved out exceptions for sickle cell.
A few months later, Ms. Craig’s doctors began cutting back on the amount of intravenous narcotics she was given for pain crises. She argued that the reduced doses were not working. Her hematologist, Dr. Jashmin K. Patel, urged her to take hydroxyurea, a chemotherapy drug that is a standard treatment for the disease, saying it would reduce her pain, according to medical records. Ms. Craig had tried it, but had an unusually severe reaction, with mouth sores, hair loss and vomiting, so she stopped. She said she felt that the doctor wasn’t taking her complaints about the side effects seriously. (Most patients can take the drug successfully.)
“Why do you dear doctor still bully me to take it,” Ms. Craig wrote in her journal on Sept. 17, 2017.
She didn’t want a doctor who preached to her, she wrote, but one who listened, because as someone “who deals with how MY body works with this disease don’t you think my expertise outweighs yours.”
Over the past decade, even some of the best-informed sickle cell specialists have begun reconsidering their reliance on long-term opioid therapy. They have found little evidence to suggest that sickle cell patients who regularly take opioids see their quality of life improve. And their concern about long-term reliance on narcotics is especially high in patients like Ms. Craig, who are living well into middle age with a disease that used to kill its sufferers in childhood or early adulthood.
Dr. Lanzkron at Johns Hopkins said her patients would “end up on these ridiculous doses” and “still have the same level of pain.”
“It’s a terrible treatment,” she said.
So the specialists started trying to teach people with sickle cell how to lessen and tolerate pain with techniques including therapy, meditation and hypnosis.
Ms. Craig had tried everything — warm baths, elevating her feet, steady breathing. She hated feeling dependent on pills. Yet she dreaded the way a simple ache crescendoed to feel like a thousand bee stings or a hand smashed in a door.
In July 2018, her need for relief led to conflict during a visit with Dr. Patel. Alarm bells began ringing in Ms. Craig’s head when the doctor stepped into the room accompanied by a stenographer.
Dr. Patel said she was concerned that Ms. Craig was not taking hydroxyurea as she was supposed to, according to medical records reviewed by The New York Times. She told Ms. Craig that she was not going to increase her pain medication, noting in the file that Ms. Craig had called two weeks earlier for a refill.
Ms. Craig said in an interview that she had never asked for an increase in medication and that Dr. Patel was twisting her words and ignoring her concerns. Neither Dr. Patel nor the practice where she worked responded to requests for comment.
Voices were raised, feelings hurt. Eight days later — on July 18, 2018 — Ms. Craig got a letter from Dr. Patel saying she was no longer welcome at the practice, “because of your lack of cooperation in your medical treatment, non-compliance with treatment recommendations and frequent narcotic requests before agreed time-frame.”
‘Why should you have pain?’
After she was kicked out of Dr. Patel’s practice, Ms. Craig went to Dr. Wahid T. Hanna, a veteran oncologist at the University of Tennessee Medical Center, who had treated dozens of sickle cell patients.
By December 2018, familiar tensions arose. Dr. Hanna grew suspicious of her request for narcotics. She had gone through the 120 Oxycodone pills that he had prescribed a month earlier and wanted a refill.
On several visits, Dr. Hanna repeated a refrain as if he were saying it for the first time: He was puzzled that she had pain because she had a generally less severe version of sickle cell.
“So really, I don’t have any justification why should you have pain,” he told her on one of those visits.
“I’ve always had pain,” she replied, according to a recording Ms. Craig’s husband took of the meeting.
Months earlier, Tennessee had enacted some of the nation’s most stringent restrictions on doctors prescribing opioids during a deadly epidemic, though there were exceptions for sickle cell patients.
“My question is, with the way the state is regulating the narcotics and all that, we could be questioned,” Dr. Hanna said. “We could be red-flagged.”
If Ms. Craig had pain, Dr. Hanna said it might have been from arthritis or the heavy periods she complained of. Those could be managed without opioids, he said.
“We do this every time I come, and I’m not understanding,” Ms. Craig said.
“I’m saying this because we can be questioned,” Dr. Hanna said, and if the authorities asked him whether he saw a lot of pain in someone with her kind of sickle cell, “I’d say usually I don’t.”
“You can’t say 100 percent that it’s not possible,” Ms. Craig said.
“I want to take care of you, but I want to do it right,” he said.
In that moment, Dr. Hanna said in a later interview, “I did not know whether her pain requirements were genuine or not.”
Her red blood cell count was stable and her iron was low — metrics that, Dr. Hanna said, suggested that her sickle cell was not that severe. But experts who treat sickle cell say that iron and hemoglobin levels do not indicate how severe the disease is.
Still, Dr. Hanna reduced her narcotic dosage, encouraged her to use over-the-counter pain medicines and scheduled her for an iron infusion, which he told her would make her “feel like a different person.”
‘I feel beaten down’
Days after another disappointing visit to Dr. Hanna in December 2018, Ms. Craig sat on a light green leather couch beneath a painting of an ocean in her therapist’s office, choking back tears.
“Putting up with somebody belittling me and making me feel less than is not worth it,” she told her therapist.
It was difficult enough to control her physical pain, but reining in the mental anguish proved equally troublesome.
A former preschool teacher who speaks with wide-eyed animation, Ms. Craig has not been able to work full time since 2005 because of her unpredictable pain. She finds purpose where she can, taking care of her family, picking up the occasional odd job, babysitting for relatives and friends.
She exercised as her doctors advised, took 15 minutes a day to “be selfish” as a friend suggested and wrote prayers on brown slips of paper that she sealed in a jar. She listened as her therapist explained that there was no shame in trying to get prescriptions to relieve pain.
But all around, the signals told Ms. Craig otherwise: the constant stream of news about the opioid crisis and, one evening shortly before her Vanderbilt visit, a heated discussion with an aunt at the family dining room table.
“You can’t just come on in there and just say: ‘Look, this is the drug I take. And I know this’ll work,’” said her aunt, Nanette Henry Scruggs, who used to work at a hospital.
“The hospitals tell people all the time to be your own advocate,” Ms. Craig said.
Times were changing, her aunt explained, because doctors had overmedicated pain patients and now risked losing their licenses.
“You don’t understand it because you have the disease,” Ms. Scruggs said.
“And you don’t understand it because you don’t,” Ms. Craig fired back, her voice straining with emotion. “And you’re not the one that they look at and go, ‘Oh, she’s just exaggerating her pain.’ When I want to saw my own freaking legs off, that’s a problem!”
Many sickle cell patients feel frustrated that doctors don’t believe patients know what works. Often, that’s narcotic doses much higher than the average person requires. Yet asking for specific medications can fuel distrust, compounded by many doctors’ lack of familiarity with sickle cell.
Only one in five family physicians said they were comfortable treating sickle cell, according to a 2015 survey. Even hematologists rarely specialize in it, with a greater focus on cancers of the blood, which are more prevalent.
Ms. Craig lamented that sickle cell patients did not seem to get the sympathy given to people with other devastating illnesses. Somebody needed to change that, she told her aunt, “and I’m going to be that somebody.”
“Sickle cell patients are not abusing, are not the major cause of people overdosing,” Ms. Craig told her.
“I’m not saying that,” her aunt said, later adding, “She’s thinking I’m against her.”
“I’m not saying you’re against me, but you’re definitely not standing shoulder to shoulder with me,” Ms. Craig said.
Ms. Craig was now worked up, and her husband, Jeremy, urged her to calm down. He has long been her champion, but Ms. Craig worried her disease was a drag on her family. Jeremy, 45, their daughter, Kaylyn, 19, and their son, Mason, 15, have endured her at her weakest and angriest. They accompany her on middle-of-the-night emergency room runs and wake up when she paces their single-story brick home in the middle of the night because of pain.
Still, they have always looked out for her. Her husband first learned that she had sickle cell when they were dating and she told him that she was having a pain crisis. He drove her to the emergency room at 2 a.m., kissed her on the forehead and told her he loved her. She was sold. And because he was white, there was a lower chance that he would carry the sickle cell mutation, meaning it was less likely that their children would have the disease — something she also found appealing.
For Mr. Craig, simply watching his wife suffer was not an option. He always looked for solutions and thought he’d come up with one as he scrolled through his cellphone one evening in their dim living room: marijuana.
“I think you should try it,” he said.
Ms. Craig waved him off, but he insisted that it would be safe to try in states where it was legal.
“What if it works?” he asked.
“What if it doesn’t,” she replied. “I’m done talking to you about that whole situation.”
“If we go to Washington State,” he insisted.
“I’m not going,” she said, cutting him off. “To me, that feels like an addict.”
Still, she was desperate for help as her relationship with Dr. Hanna deteriorated. A social worker suggested she consult specialists at Vanderbilt.
She made the appointment. Just a few days before the visit, she made her fourth trip to the emergency room in six weeks for a pain crisis. The doctor gave her intravenous Tylenol and four oxycodone tablets. After four hours, she was still in pain and left the hospital, as she had many times, without relief.
“I want to be extremely honest with u and let you know I am tired,” she wrote to me on Facebook at 1:16 a.m., after getting home from the emergency room. “I feel beaten down by these doctors as if I am an addict.”
She was hurtling, she said, toward “a dangerous level of depression.”
‘Win their trust’
Ms. Craig fidgeted and sweat beaded around her lip, forehead and eyes. It was Jan. 18, 2019, and, at last, she sat in an exam room at Vanderbilt.
Dr. Adetola A. Kassim strolled in, chomping gum. He shook hands with her and her husband.
“So what brings you?” he asked.
For half an hour, Ms. Craig guided him through her arduous journey: hip replacement, seizures, blood clots. Pain crises usually came right before her period, she told him, and he said that researchers were exploring whether there was a link between sickle cell pain and menstruation.
Dr. Kassim, who heads Vanderbilt’s adult sickle cell program, is a native of Nigeria who has specialized in treating the disease for more than 20 years. As he listened to her medical history and symptoms, he contemplated the riddle of treating her.
“What you’ve had over the years is an interplay of your disease with other chronic health problems,” he told her. “I’m going to think about it carefully because you’re a little complicated.”
He told Ms. Craig that he needed to run tests to figure out the underlying causes of her chronic pain. Did she, for instance, have arthritis? Since hydroxyurea had so many side effects for her, he wanted to try another drug, Endari.
And he wanted to manage her pain with sparing narcotic use. He worried she was susceptible to hyperalgesia, a condition in which prolonged opioid use can alter patients’ nerve receptors and actually cause more pain.
In many ways, he was echoing Dr. Hanna. She needed to take fewer narcotics. Sickle cell probably was not the cause of some of her pain. But he never questioned whether she was hurting. He listened. He laid out a plan.
“You can’t just come in one day and be like a cowboy,” Dr. Kassim said in a later interview. “You’ve got to win their trust and begin to slowly educate them.”
After she left his office that day, Ms. Craig leaned her head on her husband’s shoulder. “I feel like we should have come here a long time ago,” she said.
‘Too good to be true’
Three months after her first visit with Dr. Kassim, pain radiated through her lower back, left hip, elbows and knees. She was out of hydrocodone, and her next refill was more than a week away.
“Continue alternating between Aleve and extra strength Tylenol,” Karina L. Wilkerson, a nurse practitioner in Dr. Kassim’s office, counseled her in an email, prescribing a muscle relaxer and telling her: “Rest, heat and hydrate.”
Days later, the pain was so unrelenting that Ms. Craig went to the emergency room and got a dose of intravenous narcotics.
She felt as if history was repeating itself. She was trying to wean herself from opioids, to rely mostly on over-the-counter meds, to use heat and ice, but it was not working.
“I feel like I’m a junkie,” she said in an interview, her voice cracking.
The pain returned a day after she left the hospital. With four days until her next visit to Dr. Kassim, she sent another message to ask whether there was anything more to be done, careful not to request hydrocodone. A nurse wrote that she could be prescribed more muscle relaxers, but “we cannot fill any narcotics for you before your appointment.”
Ms. Craig felt as if she was back where she started. Dr. Kassim was friendly, attentive and knowledgeable, yet she was still enduring pain.
“A part of me knew we’d be back in this position,” she said, “that it was too good to be true.”
‘A defeated acceptance’
One day last May, Ms. Craig had spent a lot of time on her feet at a family gathering after a relative’s death. As she settled in for the evening, a family friend dropped off two children she had agreed to babysit, and she braced for the inevitable result of a busy day: pain.
In the past, she would have taken a hydrocodone earlier in the day as a maintenance dose. But she had been seeing Dr. Kassim for more than a year, and although pain continued to gnaw at her, she was starting to buy into his advice. She had paid close attention to Facebook groups and news from medical journals with the latest developments on sickle cell. In her 48th year battling the disease, her perspective was changing.
She had come to realize that no matter how much hydrocodone she took or how well versed her doctor was in the disease, her pain did not disappear — and that the medical consensus had shifted against relying mainly on narcotics.
“It’s like a defeated acceptance,” she said.
In the wee hours of the morning after the family gathering, she began to hurt. Her hips throbbed. She tried to sleep on her left side, then her right. She lay on her back and elevated her feet. Nothing worked.
Still, she held off on the narcotics. Most people with sickle cell remember a crisis when their pain was “at a zillion and you were sitting in that emergency room, waiting for them to call you, and all you wanted to do was pass out,” she said. “We live on that edge of fear.”
She held off until about 11 a.m., when she took a hydrocodone. It provided enough relief to keep her out of the hospital — just the kind of progress Dr. Kassim wanted from her.
He sought to address the underlying triggers of her pain: sickle cell, worn joints, her menstrual cycle, nerve damage and prolonged opioid use. The main thing, he said, was to stabilize her quality of life. That goal motivated her.
But the spread of the coronavirus has interfered with their plan.
Dr. Kassim told Ms. Craig during a visit in February of last year that he wanted her to get an M.R.I. to better understand the underlying causes of her pain. But the pandemic hit, and she was not able to get that imaging until December. It revealed some of the pain triggers that Ms. Craig will have to get under control: a bulging disk in her back, and arthritis in both hips and her left shoulder.
She held off going to physical therapy for fear of catching Covid-19, but is now planning to go since she has been vaccinated. She has tried to tolerate the pain and avoid the hospital, but not always successfully. There were three visits in a week last June and a five-hour wait during a September visit.
Through the past year, she has grown more resolute, trying to raise awareness and support for people with the disease in Knoxville. She had masks made with the words “sickle cell” printed across the front. She has resolved to live with the disease, not suffer from it.
“It’s just my life,” she said. “The one I’ve been dealt.”
Most respiratory illnesses don’t require antibiotics, which can have harmful side effects.
Should you take antibiotics for a simple respiratory infection?
The Centers for Disease Control and Prevention recommends that health care personnel prescribe antibiotics sparingly, for many reasons. First, the overuse of the drugs leads to the development of resistant strains of bacteria, a growing problem that is reducing the effectiveness of all antibiotics. The drugs can also have serious side effects, ranging from mild rashes or diarrhea to less common and severe allergic reactions.
Because antibiotics can destroy normally helpful bacteria in the gut, their use can lead to life-threatening intestinal infections with Clostridioides difficile, or C. diff. The use of antibiotics in infancy and childhood has been linked to the development of allergic and autoimmune diseases, probably because they disturb the body’s normal balance of microorganisms. According to one estimate, adverse reactions to antibiotics result in 143,000 emergency room visits annually.
For all these reasons, most doctors have been trying to limit antibiotic use. For doctors and their professional organizations, “antibiotic stewardship” has become the watchword.
In some cases, the C.D.C. recommends an approach called “delayed prescribing.” With this approach, the doctor gives a patient a prescription for antibiotics, with instructions to wait a few days to fill it, and see if they get better without medicine. There is good evidence that this procedure is safe and effective for otitis media, a common ear infection, and for the nasal congestion of sinusitis.
Now a new review of studies, published in BMJ, suggests that delayed prescribing may also be a safe and effective approach for treating most respiratory tract infections. For their analysis, researchers combined individual patient data on more than 55,000 people in nine randomized controlled trials and four observational studies.
On average, they found no difference in follow-up on a seven-point symptom severity scale between patients given immediate antibiotics for respiratory infections and those given delayed prescriptions.
Those who got delayed prescriptions had symptoms for an average 11.4 days, about the same as those given no antibiotics at all, compared with 10.9 days for those given the drugs immediately. Patients who got delayed prescriptions were less likely to visit the doctor again, and were more satisfied with their treatment than those given no prescription.
In children younger than 5, symptoms were slightly more severe during follow-up in those given a delayed prescription rather than immediate antibiotics.
“A lot of these symptoms clear up in a few days anyway,” said the lead author, Beth Stuart, an associate professor at the University of Southampton in England. “So on average, antibiotics don’t have a huge benefit.”
“But what about special cases where antibiotics can be useful? Is delayed prescribing safe for them too?” she said. “Yes. It’s safe and effective to send them off with a delayed prescription and instructions about what to look for.”
But Dr. Jeffrey A. Linder, a professor of medicine at Northwestern who was not involved in the research, urged caution, noting that the data the researchers used did not properly distinguish diagnoses. “The most likely interpretation of the finding that there is no difference in symptom duration between patients who received immediate antibiotics, delayed antibiotics and no antibiotics,” he said, “is that most of these patients did not need antibiotics in the first place.”
The authors took measures to statistically account for differences between the various illnesses, he continued, but the study “mixes up clinical conditions that should be treated with antibiotics — strep throat, otitis media — with those that should not be — colds, acute bronchitis, viral pharyngitis.”
Dr. Holly M. Frost, an assistant professor of pediatrics at Denver Health who was not involved in the study, added that in real-world practice, few doctors use delayed prescriptions, even in cases where it is already recommended, much less for respiratory infections. “Almost everyone with ear infections and sinusitis is getting antibiotics,” she said.
Moreover, delayed prescriptions may not help with reducing antibiotic use, she said, since most people just go directly to the pharmacy with their “delayed” prescription anyway. In one medical practice she surveyed, she found that 93 percent of delayed prescriptions were filled immediately.
Lecturing patients about antibiotic resistance, she said, is not the right approach either. Rather, the approach should be, “You’re not going to feel any better if you take antibiotics.” She is not against the practice of offering delayed prescriptions, but sees it as one option among several.
“We have to explore any strategies we have for reducing antibiotic prescribing,” she said.
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.
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.
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.”
Social medicine programs, which often encourage patients to engage with other people, can help address dementia, isolation and more.
This article is part of our new series on the Future of Health Care, which examines changes in the medical field.
Less than five years ago, Mary Albrecht was a professor of marketing at Maryville University in St. Louis. She gave lectures and led classroom discussions; she advised students; she interacted with her faculty colleagues. In 2017, Ms. Albrecht learned she had Alzheimer’s disease, and she retired that same year — losing a network of students, colleagues and friends that had nourished her for 31 years.
As her Alzheimer’s advanced, Ms. Albrecht found herself — despite the best efforts of her husband, Jack, and their children — increasingly isolated. Then in 2019 a social worker told Mr. Albrecht about a cognitive stimulation therapy group at Saint Louis University’s Aging and Memory Clinic. The group follows a treatment protocol designed to help engage patients with moderate-to-severe levels of Alzheimer’s and Lewy Body dementia. Ms. Albrecht, 70, who lives with her husband in the St. Louis suburb of Chesterfield, Mo., has now been taking part in the weekly sessions with around eight other dementia patients for about a year and a half.
Ms. Albrecht is one of 144 participants in the clinic’s 12 groups, which are funded by a research grant so there is no cost to the patients. During the hourlong group sessions, at first in person but now remote during the pandemic, Ms. Albrecht and the other patients listen to music and participate in group discussions led by a moderator. These discussions vary depending on the level of impairment and include topics such as what animals patients like at the zoo and what movies they’ve seen. The goal is to improve various aspects of cognition and memory in a stimulating, positive social environment where patients engage with one another.
“The interaction,” said Mr. Albrecht, an engineer who retired last year from a career in the energy conservation field to help take care of his wife, “that’s the main benefit we see for Mary.”
“She’s always been a people person,” he added. “So, this is really great for her.”
She’s not alone. “Like all human beings, people with dementia continue to need social interaction,” said Aimee Spector, a professor of old age clinical psychology at University College London, who created the cognitive-stimulation program that the Saint Louis University group is based on. Although the program was originally designed to allow patients to interact in groups or one-on-one, “we’ve found that cognition and quality of life seems to improve significantly when they’re in a group.”
As such, the program is an example of what may become part of the treatment for a wide range of issues: socialization, or, as it’s often being described, “a social prescription.”
This is not just a case of physicians encouraging their patients to get out and see friends a little bit more. Social medicine is more systematic and often involves the use of structured group interactions.
“I think it’s the way of the future,” said the U.C.L.A. neurologist Indu Subramanian, director of the Department of Veterans Affairs Southwest Parkinson’s Disease Research, Education and Clinical Center. “Social prescribing meets people in the community where they are, and links them to social support structures.”
Dr. Subramanian said she had seen the value of social group interactions for her Parkinson’s patients: “Loneliness is a big issue for them. Any way we can develop connections can help.”
Social prescriptions are already being written in Britain, where physicians can now direct patients to a “link worker,” a trained specialist who focuses on connecting patients to community groups and services for practical and emotional support. Link workers not only connect patients with existing groups but also help create new groups, working as needed with local partners.
Britain’s National Health Service calls social prescribing a “key component” of the country’s health care system, and it has set a goal to have nearly one million patients referred for social-prescription interventions by 2024.
“It’s now part of normal practice,” said Dr. Krishna Kasaraneni, a general practitioner in the Yorkshire city of Sheffield, and a member of the British Medical Association executive committee that helped lead the effort to implement social prescribing in 2019. “We use it for vulnerable older patients who live by themselves, for people with diabetes who are overweight, and we put them in touch with community groups that can help get them outside and exercising.”
And, he added, it’s not just older adults who benefit. “I have young patients with other chronic conditions, people with mental health issues,” he said. “There are no age barriers, no limits on what social prescribing can support people with.”
That view appears to be shared by a growing number of individuals and organizations in the United States, including Surgeon General Vivek H. Murthy, who in his 2020 book “Together: The Healing Power of Human Connection in a Sometimes Lonely World,” wrote that social prescribing “reflects a recognition that loneliness affects our health, and we have a universal need to connect with one another.”
Last year, the V.A. started “a new social prescription program,” called Compassionate Contact Corps. Originally a home visitation program, it was restarted as a teleservice for veterans experiencing loneliness and social isolation when the pandemic hit. About 1,000 veterans are participating in the program, which involves phone or video calls with trained volunteers and requires a referral from the veteran’s medical care team.
“Veterans we weren’t able to reach with the in-home program, we are able to reach with the ‘phone buddy’ program,” said Prince Taylor, deputy director for the V.A.’s Center for Development and Civic Engagement. “Overwhelmingly, the veterans who have participated in this program tell us it is helping them.”
But how, exactly? And can the outcomes of social prescribing be accurately measured? “I would not have any hesitation saying that socialization is an important aspect of health,” said the Cleveland Clinic neurologist Marwan Sabbagh, director of translational research at the clinic’s Lou Ruvo Center for Brain Health in Las Vegas. “But the quantification is something that needs to be done in a way that would be universally accepted. We can measure things like memory and cognition, but I’m not familiar with ways we can clinically capture or quantify social isolation.”
He added that researchers in other disciplines — the social sciences, for example — might have tools to help with this and could play a role in the future of developing social prescription protocols in the United States.
The authors of a recent New England Journal of Medicine article on the British social prescription model agree that better assessment methods are needed. While calling the implications of social prescribing “profound,” they noted that “physicians need reliable information on what interventions work best and for whom and how social prescription can best be integrated into conventional medical practice.”
Some see this as linked to a larger shift in medicine toward a more holistic approach. “We have to remember,” said Dr. Kasaraneni, “people don’t come to us with a list of medical problems; they come with a life, and a life that may have medical issues but also social and emotional issues.”
Other doctors say that social prescribing may become the norm in the United States sooner than later. “I think the pandemic has really opened up the door for this kind of thing,” said Dr. Malissa J. Wood, co-director of the Corrigan Women’s Heart Health Program at the Massachusetts General Hospital Heart Center. Dr. Wood has used structured support groups as part of community programs she designed to improve the cardiovascular health of low-income, high-risk women.
“I think this will definitely become more of a structured part of the practice of medicine,” she said. “People recognize that it’s not that hard to log on to a virtual group meeting, and it can bring people together who wouldn’t have otherwise been able to.”
That’s how Mr. Albrecht said he felt about his wife’s weekly group sessions at the Saint Louis University program. And his criterion for assessing its value is simple. “Any time she gets that social interaction, the smile is there,” he said. “I wish she could do it every day.”
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
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
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.”
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.”
Kitty Bennett contributed research.
Como médica de cuidados paliativos en la era de la COVID-19, conozco a muchas familias que enfrentan dificultades al tomar decisiones para sus seres queridos que se ponen demasiado enfermos, demasiado rápido, como para tomar sus propias decisiones de atención médica.
En una ocasión, el hijo de un paciente en estado crítico nos pidió que pospusiéramos las decisiones importantes sobre el cuidado de su padre hasta que hubiera mejorado lo suficiente como para poder participar en las conversaciones.
“No estoy seguro de lo que él querría”, dijo el hijo. “Nunca hemos hablado de ello”.
Es, sin duda, lo más común que escucho de las familias.
Ver al paciente día tras día, conectado a un respirador y a un sinfín de tubos y líneas, era como ver a un pasajero en un tren desbocado. Murió tras 17 días en cuidados intensivos, sin mejorar lo suficiente como para decirnos si el soporte vital prolongado que recibía era realmente aceptable para él, y mucho menos para despedirse de su familia.
Un estudio de la Kaiser Family Foundation informaba que solo el 56 por ciento de los estadounidenses adultos han tenido una conversación seria sobre sus preferencias en materia de atención de la salud, el 27 por ciento ha escrito sus preferencias y solo uno de cada diez las ha discutido con un proveedor de atención médica.
Muchas familias se sorprenden al descubrir que un testamento en vida estándar no proporciona orientación específica sobre las numerosas decisiones que deben tomarse cuando una persona está gravemente enferma y puede requerir soporte vital.
Lo más efectivo que los pacientes y las familias pueden hacer para tomar el control de su atención médica es el simple acto de pensar en lo que es más importante si se enferman gravemente e identificar a una persona en la que confían para que hable por ellos si no pueden hablar por sí mismos.
Ahora que estamos viviendo una pandemia, tener esta conversación se ha convertido en algo especialmente urgente, cuando los síntomas leves parecidos a una gripe pueden convertirse en una insuficiencia respiratoria potencialmente mortal en cuestión de horas.
Antes de la COVID-19, a menudo nos dábamos el lujo de tener tiempo para hablar sobre los valores y las prioridades de un paciente. La familia, las mascotas, estar en casa, la independencia y la fe encabezaban la lista de casi todos.
Algunos dicen que lo más importante es vivir el mayor tiempo posible. Otros opinan que lo más importante es la calidad de vida. Les preocupa sufrir sin motivo, convertirse en una carga o sobrevivir en un estado inaceptable.
Con la COVID-19, la ventana para mantener estas conversaciones suele cerrarse antes de que alguien se dé cuenta de que estaba abierta. Los pacientes hospitalizados no pueden recibir visitas y suelen estar demasiado enfermos como para comunicarse por teléfono. Una vez conectados a un respirador, la mayoría no puede comunicarse para nada.
Muchas familias que se ven abocadas a la toma de decisiones de emergencia suelen optar por los cuidados intensivos como la vía “más segura”, sin darse cuenta de los riesgos y las cargas que conlleva esta elección.
Veo que muchas familias ponen sus esperanzas en que un ventilador mantenga vivo a su ser querido. Los respiradores pueden salvar la vida. Pero también conllevan riesgos. Debido a que los datos son limitados y cambian rápidamente, el riesgo de morir por la COVID-19 una vez conectado a un respirador es un blanco en movimiento. Hasta ahora, los datos publicados en Estados Unidos sugieren que aproximadamente la mitad de los pacientes con respiradores no sobreviven a la enfermedad, y que las probabilidades de supervivencia disminuyen con la edad y las enfermedades crónicas existentes. La mayoría de los que sobreviven necesitan semanas o meses en un centro de enfermería especializado. Los pacientes que se recuperan pueden tener dificultades con la pérdida de memoria, el trastorno de estrés postraumático y actividades rutinarias como caminar y comer. Muchos nunca recuperarán su calidad de vida anterior.
Sabiendo lo imprevisible que es el comportamiento de la covid, te insto a que designes a alguien como responsable de la toma de decisiones. Habla ahora con esa persona sobre lo que más importa si enfermas gravemente y lo que consideras esencial para una calidad de vida aceptable.
Llámalo “la conversación”. La conversación puede resultar incómoda al principio. No hay una respuesta única para todos. Pero debes saber que tener “la conversación” significa que si hay que tomar decisiones difíciles en tu nombre, estas reflejarán tus deseos.
El objetivo de “la conversación” es concretar lo que más importa, porque la “calidad de vida” significa algo diferente para cada persona.
Un hombre de 87 años con una enfermedad pulmonar dijo que el único resultado razonable para él era poder seguir viviendo de forma independiente en su terreno de una hectárea y cortar su propia leña.
Una madre de 36 años con cáncer dijo que mientras pudiera sentir los cuerpecitos de sus hijos contra ella, esa vida valía la pena.
Después de nuestro primer grupo de casos de covid, a principios de marzo, llamé a mi madre, una trabajadora social jubilada de California. Siempre había tenido claros sus deseos, pero comprobarlo me pareció una buena idea.
Platicamos sobre dónde compraba la comida, cómo le iba a sus amigos y qué programas de televisión veía.
“Bueno”, le dije finalmente, “¿qué piensas de la COVID-19?”.
“He estado preocupada”, dijo. “Nunca he querido un respirador, pero tal vez me ayudaría si me da COVID-19”.
“Esto es difícil”, dije. “¿Qué es lo más importante para ti si te pones muy enferma?”.
Habló de la familia, de la independencia, de vivir en casa y no en un asilo, y de evitar el dolor. Lo que más le preocupaba era cómo sería su vida si sobrevivía tras un soporte vital prolongado.
Hablamos con sinceridad sobre los respiradores y la COVID-19. Decidió que sus deseos anteriores no cambiaban.
“Ahora me siento mejor”, dijo.
Y yo también me sentí así.
Consejos para tener ‘la conversación’
“La conversación” puede ser incómoda. Estos son algunos consejos que te ayudarán o ayudarán a tus familiares a pensar en lo que tú o ellos desean:
¿Quién es tu sustituto en la toma de decisiones? Si no has asignado un “poder notarial duradero para la atención a la salud”, este recae en tu pariente más cercano. En el estado de Washington, por ejemplo, tu pariente más cercano legal es tu cónyuge o pareja de hecho registrada en el estado, luego los hijos mayores de 18 años, luego los padres y luego los hermanos. En la mayoría de los estados, los poderes sobre los cuidados médicos deben ser notariados o atestiguados por dos personas que no tengan relación contigo.
¿Has redactado un testamento en vida? ¿Refleja tus deseos? ¿Quién tiene una copia?
Habla con la persona que tomará en tu lugar las decisiones sobre tus deseos. Comparte con ella lo que es más importante para ti, por ejemplo: estar en casa, estar con la familia, vivir el mayor tiempo posible, poder despedirte.
Honoring Choices Pacific Northwest y el Conversation Project ofrecen guías útiles para iniciar estas conversaciones y documentarlas.
Laura Schellenberg Johnson es médica de cuidados paliativos y de medicina interna y ejerce en EvergreenHealth en Kirkland, Washington.
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.
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.
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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.”
Dr. Michelle Thompson, a family medicine physician in Ohio, had to convert to seeing her patients via telemedicine overnight.Credit…Dustin Franz for The New York Times
- Jan. 26, 2021, 5:00 a.m. ET
Dr. Michelle Thompson knows a lot about self-care. A family medicine physician in Vienna, Ohio, she specializes in lifestyle and integrative care, using both conventional and alternative therapies to help her patients heal. She also teaches medical personnel how to prevent and treat burnout.
But despite what she recommends to others, taking care of her own emotional well-being hasn’t been easy during the pandemic.
When the pandemic hit in March, Dr. Thompson, 46, who is also chair of medicine for the University of Pittsburgh Medical Center Horizon regional health service, was seeing about 25 patients a day in her office, whom she had to convert to seeing via telemedicine “overnight,” she said.
In April, she joined an eight-week online mind-body skills program run by Dr. James S. Gordon, founder and executive director of The Center for Mind-Body Medicine, which since its founding in 1991 has trained nearly a thousand health care professionals in various self-care measures that they can use in their practices. Dr. Gordon, a psychiatrist, started the skills group earlier this year to help doctors and other health care workers cope with the extra demands and psychological suffering the pandemic has brought. The program included weekly Zoom calls with others on the front lines, along with meditative exercises like drawing pictures, visualizations and guided imagery.
“It allowed me two hours a week to check in with myself and share my experience with other health care professionals who could relate to the overwhelm and intensity of the pandemic,” Dr. Thompson said. “I never realized the power of group support.”
Physician burnout has long been a serious concern in the medical community, with roughly 400 doctors dying by suicide each year in the United States. The issue of pandemic burnout among physicians came to the forefront in the early months of the pandemic following the death of Dr. Lorna M. Breen, who supervised the emergency department at New York-Presbyterian Allen Hospital in Manhattan. Dr. Breen, who had been sick with Covid but working remotely, was later admitted to a psychiatric ward for 10 days. Fearing the professional repercussions of her mental health treatment, she took her own life in April.
“She was overwhelmed with the volume of death and dying, and she could not keep up,” said her brother-in-law, Corey Feist, a lawyer in Charlottesville, Va. “The industry needs a big cultural change.”
Mr. Feist and his wife, Jennifer Feist, Dr. Breen’s sister, have since co-founded the Dr. Lorna Breen Heroes’ Foundation, a nonprofit dedicated to protecting the emotional well-being of health care workers. The Feists also worked with politicians and a cross section of health care industry experts to develop the Dr. Lorna Breen Health Care Provider Protection Act, which aims to reduce and prevent burnout, mental and behavioral health conditions and suicide among health care professionals.
An October poll of 862 emergency physicians nationwide from the American College of Emergency Physicians and Morning Consult found that 87 percent felt more stressed since the onset of Covid-19, with 72 percent experiencing a greater degree of professional burnout. Concerns about family, friends and their own health were among their chief concerns, along with financial and job security and a lack of personal protective equipment. Yet consistent with a longstanding stigma surrounding physician mental health, 45 percent weren’t comfortable seeking mental health treatment, citing concerns about workplace stigma and fear of professional reprisal.
The American Psychiatric Association, the American Medical Association and other professional groups, have formal statements against punishing doctors who seek mental health treatment. The Americans With Disabilities Act, which prohibits discrimination based on disability, including psychiatric disability, applies to professional licensing bodies. Still, the stigma persists.
A growing number of organizations and programs have taken up the charge to help doctors, nurses, residents, interns and medical students who are struggling with mental health issues.
Columbia University, for example, created CopeColumbia for employees of Columbia University Irving Medical Center. Another program called #FirstRespondersFirst, from the Harvard T.H. Chan School of Public Health, Thrive Global, and the CAA Foundation, recently unveiled its new mental health initiative, designed to provide support to health care workers in the United States and abroad. The Frontline Workers Counseling Project includes some 500 volunteer therapists in the San Francisco Bay Area, while the Physician Support Line, started in late March, is a free, national support line of some 700 volunteer psychiatrists who provide peer support.
“Part of the healing for me is helping other people,” said Dr. Lois Kroplick, a psychiatrist in private practice in Pomona, N.Y., who co-ran a weekly support group for psychiatrists and psychologists at Garnet Health Medical Center, in Middletown, N.Y., and volunteered with the Physician Support Line. During this same period, Dr. Kroplick lost her first grandchild and mother-in-law. “The best way to cope with my own grief was to help others,” she said.
Doctors recognize the growing need for mental health help for others, and for themselves. And as the infection rate continues to climb, many health care workers feel torn between their duty to help patients while also caring for themselves.
Elizabeth M. Goldberg is an associate professor of emergency medicine at Brown University, in Providence, and an emergency room physician. “In March and April there was this sense that you choose either your patients or yourself and it was your expectation to be there,” said Dr. Goldberg, 38, who has three young children. “Many of us wanted to be there, but I did experience fear and anxiety about going to work.”
She attended a free support group for health care workers, which she had never done before. “It was great hearing other people share similar experiences I had of not sleeping well and worrying about our family’s health and talking openly about our anxiety and fear of contracting the illness,” she said.
Kathleen S. Isaac, 32, clinical assistant professor at NYU Langone Health who is also in private practice in New York, created a weekly support group in June for her residents. But not many doctors showed up. Part of that she attributes to time constraints and demanding schedules, but also that many were simply trying to be stoic and power through.
“Asking for help is less stigmatized in the psychological community, but sometimes I think there’s a sense of ‘I’m fine, I know what I’m doing,’” she said. “There’s such a culture of perfectionism, and it’s so competitive that people want to present their best self. It’s harder to admit they’re struggling.”
This applies in her own life, too. She talks to friends and colleagues, exercises, goes to therapy and admits to binge-watching the sitcom “That’s So Raven” to help her unwind.
As for Dr. Thompson, she credits the Body Mind Skills group with helping her change her own self-care routine, checking in with herself hourly. “I ask myself, ‘What do I need? How am I caring for myself in this moment? Do I need a cup of tea? Should I implement some mind-body medicine?’” she said.
This might include soft belly breathing, dancing, mindful eating or just heading outside to get a breath of fresh air. “Maybe I just need to use the restroom and need to make time for simple basic self-care needs,” she said.
“This has been the hardest time of my life, and I am super grounded and really well balanced,” she added. “I am doing OK, but it is constant work and making sure I’m staying aware of my own self.”
“I’ve known you since 2003,” my patient reminded me, after I had entered the examination room and took my usual seat a few feet away from her. She was sitting next to her husband, just as she had been at her first visit 17 years earlier, and both wore winter jackets to withstand the sleet that Cleveland had decided to dump on us in late October. “That was when I first learned I had leukemia,” she added. He nodded dutifully, remembering the day.
I was freshly out of my fellowship training in hematology-oncology back then, and still nervous every time I wrote a prescription for chemotherapy on my own, without an attending’s co-signature. In her case, it was for the drug imatinib, which had been on the market only a couple of years.
At the time, a study had just reported that 95 percent of patients who had her type of leukemia and who were treated with the drug imatinib achieved a remission. But on average, patients in that study had been followed for just a year and a half, so I couldn’t predict for her how long the drug might work in her case.
Seventeen years later, she was still in a remission. During that time, she had retired from her job as a nurse, undergone a couple of knee replacements, and had a cardiac procedure to treat her atrial fibrillation.
“You had a toddler at home,” she reminded me. That son was now in college. “And then your daughter was born the next year. And you had another boy, right?”
I nodded, and in turn reminded her of the grandchildren she had welcomed into the world during the same time. We had grown older together. Then we sat quietly, staring at each other and enjoying the shared memories.
“I can’t believe you’re leaving me,” she said softly.
When I decided to take a new job in Miami, I knew how difficult it would be to tell the other doctors, nurses, pharmacists and social workers I work with, the team from whom I had learned so much and relied upon so heavily for years.
I didn’t anticipate how hard it would be to tell my patients.
For some with longstanding, chronic cancers, it was like saying goodbye to a beloved friend or a comrade-in-arms, as if we were reflecting on having faced down an unforgiving foe together, and had lived to tell about it.
For others, still receiving therapy for a leukemia that had not yet receded, I felt as if I were betraying them in medias res. I spent a lot of time reviewing their treatment plans and reinforcing how I would transition their care to another doctor, probably more to reassure myself than my patients, that they would be OK.
A few were angry. Unbeknownst to me, my hospital, ever efficient, had sent out a letter informing patients of my departure and offering the option to choose any one of eight other doctors who could assume their care — even before I had a chance to tell some of them in person. How were they expected to choose, and why hadn’t I told them I was leaving, they demanded indignantly.
I felt the same way as my patients, and quickly sent out my own follow-up letter offering to select a specialist for their specific types of cancer, and telling my patients I would miss them.
I then spent weeks apologizing, in person, for the first letter.
And though I always tell my patients the best gift I could ever hope for is their good health, many brought presents or cards.
One man in his 60s had just received another round of chemotherapy for a leukemia that kept coming back. I think we both knew that the next time the leukemia returned, it would be here to stay. When I entered his examination room, he greeted me where my other patient had left off.
“I can’t believe you’re leaving me.”
Before I could even take a seat, he handed me a plain brown bag with some white tissue paper poking out of the top and urged me to remove its contents.
Inside was a drawing of the steel truss arches of Cleveland’s I-90 Innerbelt bridge, with the city skyline rising above it.
“It’s beautiful,” I told him. “I don’t know what to say.”
“You can hang this on your office wall in Miami,” he suggested, starting to cry. “So you’ll always remember Cleveland.” And then, Covid-19 precautions be damned, he walked over and gave me a huge bear hug. After a few seconds we separated.
“No,” I said, tearing up. “I’ll hang up the picture and always remember you.”
Mikkael Sekeres (@mikkaelsekeres), formerly the director of the leukemia program at the Cleveland Clinic, is the chief of the Division of Hematology, Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine and author of “When Blood Breaks Down: Life Lessons From Leukemia.”
My wife’s parents have led a relatively monastic existence since about mid-March.
Both are in their 80s and live independently in rural Pennsylvania, maintaining a three-acre property by themselves. My father-in-law, the older of the two, has skirted major medical problems despite a decades-long indiscriminate diet, a testimony to the triumph of genetics over lifestyle choices. My mother-in-law, on the other hand, has been ravaged by lupus, which flares regularly and requires medications that suppress her immune system.
So when Covid-19 hit, we feared for their health, given their ages and her compromised immunity, and begged that they place themselves on lockdown, so we wouldn’t lose them to the pandemic.
And they did.
Where they used to buy groceries at their local Giant Eagle supermarket (which they call the “Big Bird,”) they turned instead to Instacart for home delivery, shrugging off the random items their shopper would get wrong with good humor.
Where they used to attend church in person every Sunday, they caught the video highlights online when they became available on Monday morning.
We arranged weekly Zoom calls with them, to replace our frequent visits.
We used to say that their social life rivaled ours, as they got together with friends they have known since kindergarten (kindergarten!) several times each week for dinner, drinks or shows. Instead, during the pandemic, they’ve replaced those social events with going cruising together in their blue ’55 Chevy Bel Air, satisfying themselves with the feel of a car they first drove in their teens, the beautiful countryside and a wave at their friends, who sat at a safe distance on their front porches.
Our whole family has been proud of them to the point of bursting. But in September, after six months of this, my father-in-law got antsy and did the unthinkable: He went to the hardware store, ostensibly for a tool, but really to see his friends who tend to congregate there.
He caught hell for his modest indiscretion, first from his wife, and then from mine. They explained to him that he could have ordered the piece online. They reminded him that his actions can affect my mother-in-law, and her frail health, too. Finally, he had enough.
“I’m 85 years old,” he said. “Eighty-five! I’m careful, I wore a mask. What do you expect me to do, spend the rest of my days here in prison?”
That gave me pause — my wife, too. At 85, he had done the math. Despite his lucky genetics, he probably didn’t have many years left on this earth, and he didn’t want to spend one or two of them in isolation.
Understanding the risks and consequences of his actions, shouldn’t he be allowed to see his buddies at the hardware store, and maybe buy a tool while he’s there?
I thought about it from the perspective of my patients, many of whom also don’t have much time left on this earth, and the conversations we had been having in clinic.
At the beginning of the pandemic, I was “Dr. No,” prohibiting my patients, most of whom have devastated immune systems, from engaging in their usual social activities. Where much of what we had all been hearing from government authorities about Covid-19 transmission had often been contradictory, I wanted to give concrete advice.
Attending a family gathering to celebrate a birthday? No.
How about a high school graduation party for a granddaughter? No.
Visiting elderly parents in another state? Not safe for you or them.
A road trip to Montana with a friend (this from a man in his 80s with leukemia): Are you kidding me?
At the risk of sounding paternalistic, I feared for my patients’ health, as I did for my in-laws’ health, and wanted to protect them.
But perhaps because our understanding of Covid-19’s epidemiology has gotten better over time; or with our recognition that we may have to live with the pandemic for many months more; or given my father-in-law’s perspective that people at the end of life should make their own risk-benefit calculations, my conversations have now become more nuanced.
I’m more open to my patients not missing important life events, when there may not be much life for them left, provided they take precautions to avoid endangering themselves or those around them, particularly amid the most recent surge in Covid-19 cases.
One woman with leukemia was receiving chemotherapy early in 2020 when her daughter had a miscarriage. Now that her daughter is eight months pregnant again, can she hold the baby when it is born? Absolutely, let’s talk about how to do it safely.
Another patient’s mother died. Can she attend the funeral? Yes, with appropriate distancing, limited numbers, and personal protective equipment. But skip the reception.
The road trip to Montana? I still wasn’t comfortable with that, but my patient and his friend went anyway, took their own food, slept in their truck, and he returned without Covid-19.
And my father-in-law? He gets out of the house a little bit more than he used to, but not as much as he’d like. The rare times that he does nowadays, he is always masked and stays outdoors, and both he and my mother-in-law remain Covid-19-free.
Which strikes me as about the right balance.
Mikkael Sekeres (@mikkaelsekeres) is the chief of the Division of Hematology, Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine and author of “When Blood Breaks Down: Life Lessons from Leukemia.”
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.”
As we celebrate the rollout of the new Covid vaccines, don’t forget the standard immunizations and other steps to keep children safe.
My latest column, about the American Academy of Pediatrics’ new guidance on youth sports in the time of Covid, drew two very different sets of parental responses. The guidance emphasizes the importance of wearing face coverings, and also the importance of making sure that any young athletes who have had Covid infections — even asymptomatic infections — are checked out medically before they return, gradually, to full activity.
Some readers were shocked and horrified that youth sports and college sports are going on at all, even with face coverings; to some parents, that is the very definition of unnecessary risk, with players, coaching staff, perhaps parents and even spectators congregating, with the possibility of close physical contact and heavy breathing. Others were shocked and horrified at the idea of asking athletes to wear face coverings during exercise.
Those are not equivalent reactions, or at least not from my point of view. To weigh and measure the risks of participating in athletics, or to think about how to modify the normal athletic schedule to reduce infections are aspects of thinking sensibly around public health risks and benefits. That’s very different from refusing to acknowledge the increasing body of evidence that face coverings protect everyone — the wearer and the wearer’s contacts, and are safe during exercise.
It’s been a semester like no other, and I asked some people who have been taking care of the health of college athletes what they’ve learned and what they’ll be taking forward into the unknown territory of the winter and the spring.
A New York Times analysis released Friday found that more than 6,600 college athletes, coaches and staff members had tested positive for the coronavirus, and there have been reports of spectators behaving in risky ways.
To many people, intercollegiate competition, with attendant travel risks, by definition brings up highly problematic issues of university priorities, and the risks that students are asked to take.
“It’s not reasonable to ask adolescents and young adults to take on additional risks for the enjoyment of spectators and the financial gain of their universities,” said Dr. Adam Ratner, the director of pediatric infectious diseases at New York University School of Medicine and Hassenfeld Children’s Hospital at N.Y.U. Langone Health.
There are places where athletes have been exempt from campus shutdowns, he said: “Everyone is used to there being a different set of rules for athletic programs at universities,” and it’s particularly troubling to see that playing out in a pandemic.
What happens with a college’s sports program has to be seen as part of the larger question of what happens with campus life — whether the dorms are open, whether classes are happening, and whether there is an effective plan in place for limiting exposures and testing for infections.
While some conferences — the Ivy League, for example — have canceled their seasons, there are places that have kept their sports programs going even though they decided it was too dangerous to teach in the classroom, said Marc Edelman, a professor of law at Baruch College who consults on sports-related legal issues, and was the lead author on an article on college sports in the time of Covid in the Michigan State Law Review.
Basketball season, which will be indoors, will be even more dangerous than football season from the point of view of infections, he said.
“These schools have reached the conclusion, right or wrong, that because of the risks of the virus, students should be at home with their families, studying on Zoom,” Mr. Edelman said. “But they’re willing to take a small number of students, who are disproportionately minorities, and fly them back and forth across the country to compete in sporting events indoors because it’s revenue-generating. Ethically, that’s appalling, and logically it doesn’t make sense.”
Other colleges and universities, which do have students on campus and in the classroom, have modified their athletic seasons and the rules they expect their athletes to follow, amid changing information about the virus and its effects, different sports with different degrees of potential exposure, and a changing social landscape.
Dr. Peter Dean, a pediatric cardiologist who is the team cardiologist for University of Virginia athletes, noted, for example, that at the beginning of the epidemic, as it became clear that Covid infection could cause inflammation of the heart in adults, no one in pediatric cardiology knew what the implications were for children and adolescents. Now, cardiologists are much more focused on checking out those athletes who have had moderate or severe Covid infection, or who have persistent symptoms such as chest pain, fatigue or palpitations. “What we’re doing now seems to be working to protect athletes’ hearts,” said Dr. Dean, who sits on the American College of Cardiology sports and exercise leadership committee; so far, there have not been reports of unexpected cardiac events on the athletic field.
Dr. Dean said that in his experience, the students involved in fall sports had been particularly careful to follow the rules about reducing possible Covid exposure. “The fall sport athletes have something to lose, they’re being safe, not going to parties,” he said. “They want to play,” and they know that if they test positive, they can’t.
His colleague Dr. James Nataro, the chairman of pediatrics at the University of Virginia, who is a pediatric infectious diseases expert who studies emerging infections, said that the university, which had students on campus and held in-person classes in the fall, generally did well. “Against almost every prediction, the students complied, the students were just wonderful,” he said.
The school is part of the Atlantic Coast Conference, which modified its schedule to include more in-conference games, Dr. Nataro said, and spectators were kept to a minimum. Still, he said, it was clear, watching football games, that “there were lots of opportunities for transmission,” and some of the good results may have been a matter of luck. And though he himself loves football, he said, he worries about “the lesson it sends if people turn on the TV and watch all these guys without masks standing next to each other — that image isn’t lost.”
Some of the schools that canceled or curtailed their sports seasons were those that do not generate significant revenue from televised games.
Dr. Thomas McLarney, the medical director of Davison Health Center at Wesleyan University, which is a Division III school, said that for fall sports that involve close contact — football, lacrosse, soccer — the teams practiced and worked on their skills, but they did not play against other teams and “did not scrimmage even with themselves.”
In sports like tennis, where strict distancing is possible, he said, there was some opportunity for Wesleyan’s athletes to play — sometimes wearing masks while playing outside. For swimmers, the locker room was taken out of the equation; students changed in their dorm rooms, and then dried off as best they could when they got out of the pool, before going back to their rooms to change back (it helped that it was a relatively warm fall).
“I thought our plan was very good,” Dr. McLarney said, but of course, the plan was only good if the students followed it. “Our students were extremely compliant, I give these folks so much credit,” he said, adding that he was annoyed to come home and turn on the evening news, only to see stories about students taking risks.
Student athletes, Dr. McLarney said, “were hungry for being with other athletes, and we felt we could provide that to some extent — they would rather be out mixing with other teams, but they understood, it’s a pandemic.” Wesleyan is a member of the New England Small College Athletic Coalition, which made the decision in October to cancel winter sports as well, because of pandemic concerns.
“It’s hard,” Dr. Dean said. “We didn’t learn about this in medical school.”
About 2 a.m. on a sweltering summer night, Dr. Orlando Garner awoke to the sound of a thud next to his baby daughter’s crib. He leapt out of bed to find his wife, Gabriela, passed out, her forehead hot with the same fever that had stricken him and his son, Orlando Jr., then 3, just hours before. Two days later, it would hit their infant daughter, Veronica.
Nearly five months later, Dr. Garner, a critical care physician at the Baylor College of Medicine in Houston, is haunted by what befell his family last summer: He had inadvertently shuttled the coronavirus home, and sickened them all.
“I felt so guilty,” he said. “This is my job, what I wanted to do for a living. And it could have killed my children, could have killed my wife — all this, because of me.”
With the case count climbing again in Texas, Dr. Garner has recurring nightmares that one of his children has died from Covid. He’s returned to 80-hour weeks in the intensive care unit, donning layers of pandemic garb including goggles, an N95 respirator, a protective body suit and a helmet-like face shield that forces him to yell to be heard.
As he treats one patient after another, he can’t shake the fear that his first bout with the coronavirus won’t be his last, even though reinfection is rare: “Is this going to be the one who gives me Covid again?”
Frontline health care workers have been the one constant, the medical soldiers forming row after row in the ground war against the raging spread of the coronavirus. But as cases and deaths shatter daily records, foreshadowing one of the deadliest years in American history, the very people whose life mission is caring for others are on the verge of collective collapse.
In interviews, more than two dozen frontline medical workers described the unrelenting stress that has become an endemic part of the health care crisis nationwide. Many related spikes in anxiety and depressive thoughts, as well as a chronic sense of hopelessness and deepening fatigue, spurred in part by the cavalier attitudes of many Americans who seem to have lost patience with the pandemic.
Surveys from around the globe have recorded rising rates of depression, trauma and burnout among a group of professionals already known for high rates of suicide. And while some have sought therapy or medications to cope, others fear that engaging in these support systems could blemish their records and dissuade future employers from hiring them.
“We’re sacrificing so much as health care providers — our health, our family’s health,” said Dr. Cleavon Gilman, an emergency medicine physician in Yuma, Ariz. “You would think that the country would have learned its lesson” after the spring, he said. “But I feel like the 20,000 people that died in New York died for nothing.”
Many have reached the bottom of their reservoir, with little left to give, especially without sufficient tools to defend themselves against a disease that has killed more than 1,000 of them.
“I haven’t even thought about how I am today,” said Dr. Susannah Hills, a pediatric head and neck surgeon at Columbia University. “I can’t think of the last time somebody asked me that question.”
Dreading the darkness of winter
For Dr. Shannon Tapia, a geriatrician in Colorado, April was bad. So was May. At one long-term care facility she staffed, 22 people died in 10 days. “After that number, I stopped counting,” she said.
A bit of a lull coasted in on a wave of summer heat. But in recent weeks, Dr. Tapia has watched the virus resurge, sparking sudden outbreaks and felling nursing home residents — one of the pandemic’s most hard-hit populations — in droves.
“This is much, much worse than the spring,” Dr. Tapia said. “Covid is going crazy in Colorado right now.”
Dr. Tapia bore witness as long-term care facilities struggled to keep adequate protective equipment in stock, and decried their lack of adequate tests. As recently as early November, diagnostic tests at one home Dr. Tapia regularly visits took more than a week to deliver results, hastening the spread of the virus among unwitting residents.
Some nursing home residents in the Denver area are getting bounced out of full hospitals because their symptoms aren’t severe, only to rapidly deteriorate and die in their care facilities. “It just happens so fast,” Dr. Tapia said. “There’s no time to send them back.”
The evening of Nov. 17, Dr. Tapia fielded phone call after phone call from nursing homes brimming with the sick and the scared. Four patients died between 5 p.m. and 8 a.m. “It was the most death pronouncements I’ve ever had to do in one night,” she said.
Before the pandemic, nursing home residents were already considered a medically neglected population. But the coronavirus has only exacerbated a worrisome chasm of care for older patients. Dr. Tapia is beleaguered by the helplessness she feels at every turn. “Systematically, it makes me feel like I’m failing,” she said. “The last eight months almost broke me.”
At the end of the summer, Dr. Tapia briefly considered leaving medicine — but she is a single parent to an 11-year-old son, Liam. “I need my M.D. to support my kid,” she said.
It goes on and on and on
For others, the slog has been relentless.
Dr. Gilman, the emergency medicine physician in Yuma, braced himself at the beginning of the pandemic, relying on his stint as a hospital corpsman in Iraq in 2004.
“In the military, they train you to do sleep deprivation, hikes, marches,” he said. “You train your body, you fight an enemy. I began running every day, getting my lungs strong in case I got the virus. I put a box by the door to put my clothes in, so I wouldn’t spread it to my family.”
The current crisis turned out to be an unfamiliar and formidable foe that would follow him from place to place.
Dr. Gilman’s first coronavirus tour began as a resident at New York-Presbyterian at the height of last spring. He came to dread the phone calls to families unable to be near their ailing relatives, hearing “the same shrill cry, two or three times per shift,” he said. Months of chaos, suffering and pain, he said, left him “just down and depressed and exhausted.”
“I would come home with tears in my eyes, and just pass out,” he said.
The professional fallout of his Covid experience then turned personal.
Dr. Gilman canceled his wedding in May. His June graduation commenced on Zoom. He celebrated the end of his residency in his empty apartment next to a pile of boxes.
“It was the saddest moment ever,” he said.
Within weeks, he, his fiancée, Maribel, their two daughters and his mother-in-law had relocated to Arizona, where caseloads had just begun to swell. Dr. Gilman hunkered down anew.
They have weathered the months since in seclusion, keeping the children out of school and declining invitations to mingle, even as their neighbors begin to flock back together and buzz about their holiday plans.
There are bright spots, he said. The family’s home, which they moved into this summer, is large, and came with a pool. They recently adopted a puppy. Out in the remoteness of small-town Arizona, the desert has delighted them with the occasional roadrunner sighting.
Since the spring, Dr. Gilman has become a social media tour de force. To document the ongoing crisis, he began publishing journal entries on his website. His Twitter wall teems with posts commemorating people who lost their lives to Covid-19, and the health workers who have dedicated the past nine months to stemming the tide.
It’s how he has made sense of the chaos, Dr. Gilman said. What he’s fighting isn’t just the virus itself — but a contagion of disillusionment and misinformation, amid which mask-wearing and distancing continue to flag. “It’s a constant battle, it’s a never-ending war,” he said.
Reaching the breaking point
Nurses and doctors in New York became all too familiar with the rationing of care last spring. No training prepared them for the wrath of the virus, and its aftermath. The month-to-month, day-to-day flailing about as they tried to cope. For some, the weight of the pandemic will have lingering effects.
Shikha Dass, an emergency room nurse at Mount Sinai Queens, recalled nights in mid-March when her team of eight nurses had to wrangle some 15 patients each — double or triple a typical workload. “We kept getting code after code, and patients were just dying,” Ms. Dass said. The patients quickly outnumbered the available breathing support machines, she said, forcing doctors and nurses to apportion care in a rapid-fire fashion.
“We didn’t have enough ventilators,” Ms. Dass said. “I remember doing C.P.R. and cracking ribs. These were people from our community — it was so painful.”
Ms. Dass wrestled with sleeplessness and irritability, sniping at her husband and children. Visions of the dead, strewn across emergency room cots by the dozens, swam through her head at odd hours of the night. Medical TV dramas like Grey’s Anatomy, full of the triggering sounds of codes and beeping machines, became unbearable to watch. She couldn’t erase the memory of the neat row of three refrigerated trailers in her hospital parking lot, each packed with bodies that the morgue was too full to take.
One morning, after a night shift, Ms. Dass climbed into her red Mini Cooper to start her 20-minute drive home. Her car chugged onto its familiar route; a song from the 2017 film “The Greatest Showman” trickled out. For the first time since the pandemic began, Ms. Dass broke down and began to cry. She called her husband, who was on his way to work; he didn’t pick up. Finally, she reached her best friend.
“I told her, ‘These people are not going to make it, these people are not going to survive this,’” she said. “We’re there to save a person, save a life, stabilize a person so they can get further management. And here I am, not able to do that.”
Shortly after, she phoned a longtime friend, Andi Lyn Kornfeld, a psychotherapist who said Ms. Dass was in the throes of “absolute and utter acute PTSD.”
“I have known Shikha for 13 years,” Ms. Kornfeld said. “She is one of the strongest women I have ever met. And I had never heard her like this.”
The sounds of silence
Long gone are the raucous nightly cheers, loud applause and clanging that bounced off buildings and hospital windows in the United States and abroad — the sounds of public appreciation at 7 each night for those on the pandemic’s front line.
“Nobody’s clapping anymore,” said Dr. Jessica Gold, a psychiatrist at Washington University in St. Louis. “They’re over it.”
Health workers, once a central part of the coronavirus conversation, have in many ways faded into the background. Some, like Dr. Gilman, in Arizona, have had their salaries slashed as hospitals weigh how to cover costs.
Many have guiltily recoiled from the “hero” label emblazoned in commercials or ad campaigns, burdened by the death march of the people they could not save and the indiscriminate path of the coronavirus.
The word “hero” evokes bravery and superhuman strength but leaves little room for empathy, said Dr. Nicole Washington, a psychiatrist in Oklahoma. When portrayed as stalwart saviors, health workers “don’t have the room or right to be vulnerable.”
But the trope of invincibility has long been ingrained into the culture of medicine.
Dr. Tapia, the Colorado geriatrician, began taking an antidepressant in September after months of feeling “everything from angry to anxious to furious to just numb and hopeless.” The medication has improved her outlook. But she also worries that these decisions could jeopardize future employment.
Many state medical boards still ask intrusive questions about physicians’ history of mental health diagnoses or treatments in applications to renew a license — a disincentive to many doctors who might otherwise seek professional help.
Being on the front lines doesn’t make health workers stronger or safer than anyone else. “I’m not trying to be a hero. I don’t want to be a hero,” Dr. Gilman said. “I want to be alive.”
As social bubbles balloon nationwide in advance of the chilly holiday months, health care workers fret on the edges of their communities, worried they are the carriers of contagion.
Dr. Marshall Fleurant, an internal medicine physician at Emory University, has the sense that his young children, 3 and 4 years old, have grown oddly accustomed to the ritual of his disrobing out of work clothes, from his scrubs to his sneakers, before entering his home.
“I do not touch or speak to my children before I have taken a shower,” Dr. Fleurant said. “This is just how it is. You do not touch Daddy when he walks in the door.”
A week of vacation with his family startled him, when he could scoop the little ones up in his arms without fear. “I think they must have thought that was weird,” he said.
Bracing for the next wave
Trapped in a holding pattern as the coronavirus continues to burn across the nation, doctors and nurses have been taking stock of the damage done so far, and trying to sketch out the horizon beyond. On the nation’s current trajectory, they say, the forecast is bleak.
Jina Saltzman, a physician assistant in Chicago, said she was growing increasingly disillusioned with the nation’s lax approach to penning in the virus.
While Illinois rapidly reimposed restrictions on restaurants and businesses when cases began to rise, Indiana, where Ms. Saltzman lives, was slower to respond. In mid-November, she was astounded to see crowds of unmasked people in a restaurant as she picked up a pizza. “It’s so disheartening. We’re coming here to work every day to keep the public safe,” she said. “But the public isn’t trying to keep the public safe.”
Since the spring, Dr. Gilman has watched three co-workers and a cousin die from the virus. Ms. Dass lost a close family friend, who spent three weeks at Mount Sinai Queen’s under her care. When Dr. Fleurant’s aunt died of Covid, “We never got to bury her, never got to pay respects. It was a crushing loss.”
In state after state, people continue to flood hospital wards, where hallways often provide makeshift beds for the overflow. More than 12 million cases have been recorded since the pandemic took hold in the United States, with the pace of infection accelerating in the last couple months.
Jill Naiberk, a nurse at the University of Nebraska Medical Center, has spent more of 2020 in full protective gear than out of it. About twice a day, when Ms. Naiberk needs a sip of water, she must completely de-gown, then suit up again.
Otherwise, “you’re hot and sweaty and stinky,” she said. “It’s not uncommon to come out of rooms with sweat running down your face, and you need to change your mask because it’s wet.”
It’s her ninth straight month of Covid duty. “My unit is 16 beds. Rarely do we have an open one,” she said. “And when we do have an open bed, it’s usually because somebody has passed away.”
Many of her I.C.U. patients are young, in their 40s or 50s. “They’re looking at us and saying things like, ‘Don’t let me die’ and ‘I guess I should have worn that mask,’” she said.
Sometimes she cries on her way home, where she lives alone with her two dogs. Her 79-year-old mother resides just a couple houses away.
They have not hugged since March.
“I keep telling everybody the minute I can safely hug you again, get ready,” she said. “Because I’m never letting go.”
Credit Andreas Samuelsson
On Thursday we asked Well readers to take on the case of a 7-year-old boy who’d been having fevers and drenching sweats nightly for over a month. More than 300 of you wrote in, and although 20 of you came up with the right diagnosis, only three of you figured out both the diagnosis and the test needed to confirm it.
The correct diagnosis is…
Coccidioidomycosis, or valley fever.
The diagnosis was made based on a lymph node biopsy.
The first reader to suggest this diagnosis and the test was Dr. Malkhaz Jalagonia, an internist from Zugdidi, in the Republic of Georgia. He says he’s never seen a case like this, but he’s fascinated by zebras and so recognized the disease immediately. Well done, Dr. Jalagonia!
One of the reasons I chose this case was that, although this diagnosis is rare in life, it was the most frequently suggested diagnosis in my last column – the one about the middle-aged man with a cough for over a year. I thought it would be fun to show what valley fever really looks like. Hope you did too.
Coccidioidomycosis is a lung infection usually caused by inhaling the spores of a tiny fungus called coccidioides. This organism grows as a mold, a few inches below the surface of the soil in deserts in parts of the southwestern United States, Mexico and other countries of Central America.
In dry conditions, the fungus becomes fragile and is easily broken up into tiny single-celled spores that can be sent airborne with even the slightest disturbance. And once these single cells are aloft they can remain suspended there for prolonged periods of time.
Infection is usually acquired by inhaling the spores. Once lodged in the lung, the organism begins to reproduce almost immediately. The time course between exposure and disease depends on the inhaled dose and the patient’s immune system.
Symptoms, or No Symptoms
Disease severity varies considerably. Nearly half of those who breathe in these spores have no symptoms, or symptoms are so mild they never visit the doctor’s office.
More severe infection usually takes the form of a slowly progressive pneumonia known as coccidioidomycosis, or valley fever. This illness is characterized by a cough, fevers, chest pain, fatigue and sometimes joint pain. Indeed, because of the prominent joint pain, in some cases — though not this one — the disease is also known as desert rheumatism.
Rashes are also seen in many patients. Those who get a rash seem to have a more benign course of illness. The thinking is that the skin symptoms are the result of an aggressive immune response in the host to the pathogen.
Symptoms can last for months, and in many cases they resolve without treatment. But in some cases they get worse.
Hard to Diagnose
Those who seek medical attention are often not diagnosed — or not diagnosed quickly — because the symptoms of valley fever are not very specific, and few of the tests that doctors usually order have features that are unusual enough to suggest the diagnosis.
Chest X-rays are often normal. Blood tests may be normal as well, though some patients, like this child, have an unusually high number of a type of white blood cell known as eosinophils. These cells are usually seen in allergic responses or with infections due to parasites.
The most important clue to the possibility of this infection is travel to one of the areas where the fungus lives. In the United States, valley fever is endemic primarily in Arizona and southern California, as well as parts of southern New Mexico and West Texas. Indeed, the name valley fever is a shorter and more general term for an earlier name, San Joaquin Valley fever, because it was so common in that part of California.
A Dramatic Rise
There has been a significant increase in the number of cases of coccidioidomycosis in the past 15 years, with nearly 10 times as many in areas where the fungus is found. Development in areas where the fungus is endemic is thought to be the primary cause. Better diagnostic testing may also play a role.
While this infection may cause only a minor illness in many, there are some – like this child – for whom the disease can spread beyond the lungs into the rest of the body. Disseminated coccidioidomycosis is usually seen in those with some problem with the immune system – an underlying disorder such as H.I.V., for example, or because someone is taking immune suppressing medications such as prednisone.
Once out of the lungs, the bugs can go anywhere in the body, though they seem to prefer joints, skin or bones. Those with disseminated disease have to be treated for a long time – often up to a year, or occasionally for life.
How the Diagnosis Was Made
The little boy had been sick for nearly a month, and his parents were getting quite worried. He was pale, thin and really, really tired.
With their pediatrician’s encouragement, they had gone on a long planned, much anticipated vacation to the mountains of Colorado. But the child wasn’t getting better, and so his mother took him to yet another doctor – this one in a walk-in clinic.
The results of some simple blood tests done at that visit worried the doctor, who suggested that the boy be taken to a hematologist, a specialist in diseases and cancers of the blood.
Now the parents were terrified. The mother faxed copies of the lab results to her brother, a researcher in immunology. He wasn’t a physician but showed the results to friends who were. They agreed with the doctor at the walk-in clinic: The boy needed to be seen by a hematologist.
A Series of Specialists
The next morning the family headed home to Minneapolis. They took the boy to his regular pediatrician, who sent them to a hematologist. It wasn’t cancer, that specialist told them. Maybe some kind of severe food allergy, he suggested, and referred them to a gastroenterologist.
Not a GI thing, that specialist told them, and he referred the now nearly frantic family to an infectious disease specialist and a rheumatologist.
Nearly 10 days after getting the alarming blood test results, the couple and their child found themselves in the office of Dr. Bazak Sharon, a specialist in infectious diseases in adults and children at the University of Minnesota Masonic Children’s Hospital. After introducing himself, Dr. Sharon settled down to get a detailed history of the boy and the family.
A Desert Visit, but Other Possibilities
When Dr. Sharon heard that the family had spent a week at a ranch in the desert of Arizona, he immediately thought of coccidioidomycosis. The fungus isn’t found in Minnesota or Colorado – which is probably why other doctors hadn’t considered it. But it is all over the part of Arizona where they’d visited.
Still, there were other possibilities that had to be ruled out, including some types of cancer. After Dr. Sharon examined the boy, he sent the family to the lab for a chest X-ray and some blood tests.
The results of those tests were concerning. The child was getting worse. Dr. Sharon wasn’t going to be back in clinic for a week, and he was certain the child needed to be seen and diagnosed well before then. He called a friend and colleague who was taking care of patients in the hospital, Dr. Abraham Jacob, and asked if he would admit the child and coordinate the needed diagnostic workup for the boy.
First Some Answers, Then More Questions
Once in the hospital, the child had a chest CT scan. The results were frightening. The lymph nodes that surround the trachea, the tube that carries inspired air to the lungs, were hugely enlarged. They were so big that the trachea was almost completely blocked. The opening at one point was just two millimeters wide – basically the dimensions of a cocktail straw. Any worsening of his disease might cause the tube to close completely, making breathing impossible.
A pediatric surgeon was brought in immediately. The enlarged lymph nodes had to be removed. First in order to protect the child’s airways. And second because those nodes would reveal what the little boy had.
But trying to do surgery on a 7-year-old boy’s neck was complicated. Although the surgeon could easily feel the enlarged gland in his neck, it was close to many vital blood vessels, nerves and organs. The child had to lie perfectly still, and with most children that could only be guaranteed if they were under anesthesia.
When the anesthesiologist saw the CT scan, the doctors’ concern grew. They could put the child to sleep, but if anything went wrong during surgery and they had to put a tube down his throat into his lungs, they weren’t sure it would be able to fit.
The trachea was so small, there was no guarantee they could get the tube into place. In order to do this safely, they said they needed to use a technique known as ECMO, or extracorporeal membrane oxygenation – basically a machine that allows them to oxygenate blood without sending it to the lungs.
Rather than subject the child to this risky procedure, Dr. Jacob and the surgeon decided to just take a piece of the lymph node out in order to make the diagnosis. Treatment of whatever the boy had would bring the size of the lymph node down.
Don’t Make a Move
When the boy was brought to the procedure room, the surgeon explained that he was going to put numbing medicine all around the bump in the boy’s neck and take out a piece of it. The child listened calmly and agreed.
He wasn’t to move at all, the surgeon explained. The child nodded solemnly. He understood. The boy was remarkably mature and so brave throughout the entire process of anesthetizing the region that the surgeon thought he might be able to continue and get the entire node out.
He paused in his surgery and consulted the parents. Would they allow him to try this? Their son was doing so well he was sure he could get it. They agreed, and the surgeon returned to his task. The lymph node came out without difficulty.
It was sent to the lab and the answer came back almost immediately. The swollen tissue was filled with the tiny coccidioides. You can see a picture of these little critters here.
A Year of Medicine
The boy was started on an intravenous medicine for fungal infections. Then after a week it was changed to one he could take by mouth.
Because the infection had spread beyond the lungs, the child will have to take this medication for a year. After starting the medication, the child began to look a little better. Slowly he was less tired. Slowly he started to eat the way he used to.
It was a long road to the diagnosis, and an even longer road to cure, but at least they were on the right one.
A Perfect Storm?
The mother called the ranch in Arizona where they stayed to let them know what had happened.
The owner told them that their son was not the only person visiting then who got sick. At least one other guest, there at the same time, had come down with the disease.
Apparently the conditions for spread were perfect. Their stay had started off with some rain, followed by heat and some brisk wind. The moisture helped the fungus grow; the heat dried it out so that it could become easily airborne and inhaled when lifted by the wind.
Although the family has loved their visits to this ranch – this was their second year – the child’s mother tells me that she’s not sure she’ll be going back, at least for a couple of years. Most people exposed to valley fever become immune forever, but because her little boy was so very sick, she’s planning to wait a while before they return.
The challenge: A healthy 7-year-old boy suddenly starts having fevers and night sweats. Can you figure out why?
Every month, the Diagnosis column of The New York Times Magazine asks Well readers to sift through a difficult medical case and solve a diagnostic riddle. This month we present the case of a boy who has fevers topping 102 degrees every night for over a month. His parents sought help from nearly a dozen doctors in two states before a diagnosis was made.
Below I’ve given you the information that was available to the doctors who figured out the cause of the boy’s fevers. It’s up to you to use this information to put his story together for yourself.
As usual, the first person to crack the case gets a copy of my book, “Every Patient Tells a Story,” and, of course, that fabulous feeling you get when you solve a really tough puzzle.
The Patient’s Story
“I think you need to take him back home.” Her brother’s voice was calm, but she could hear an undertone of anxiety even over the poor cellphone reception that was all she could get from rural Colorado. “He needs to see a hematologist. It could be a virus, but it could also be something else.” He didn’t say it, but she knew what he was thinking: cancer.
Her son, just 7 years old and always a little delicate, had been sick for nearly a month. He was fine during the day, but every night he’d spike a fever of 102 or 103.
Even before they’d come to the mountains for a much needed vacation, she’d taken him to see his pediatrician at home in Minneapolis several times. At each visit, the doctor or one of his partners had looked the boy over closely, and each time he’d seemed fine.
It was probably viral, she was told, time after time. But he seemed to be having one viral infection after another.
A Vacation Cut Short
The day before they left for Colorado, the boy’s father took him to the doctor’s office one more time.
Maybe it wasn’t viral, the pediatrician acknowledged, and prescribed a “Z-pak” — a five-day course of azithromycin. Don’t cancel the trip, the doctor reassured him. He’ll get better.
But he hadn’t. While on vacation, his mother took him to a walk-in clinic, where they’d checked his blood. A worried looking doctor told her that he didn’t know what was wrong with her boy. He should probably see a cancer specialist.
Now she was really worried. There weren’t any specialists anywhere near the bucolic town where they were staying. That’s when she’d sent the test results to her brother, a researcher in immunology. He wasn’t a doctor, but he passed the results to friends who were, and they were worried, too.
Thin and Pale
The family headed home right away, but the 4th of July was coming. They couldn’t get in to see a hematologist until Tuesday.
By now the boy was starting to look sick. He was pale and had dark circles under his eyes. Small for his age — consistently in the fifth percentile for height and weight — he now looked even smaller, thinner. He was a quiet child, always had been. Thoughtful and comfortable in the company of adults, as so many only children are. Even now he never complained.
Nothing hurt. He was simply tired. His fevers started coming a little earlier, peaking a little higher. His mother noticed a cough and wheezing sometimes. Always a picky eater, with these intermittent fevers, very few foods seemed appealing. She tried to hide the terror she felt when he seemed to be fading as she watched.
A Long Line of Specialists
The hematologist examined the boy and sent off more blood. Definitely not cancer, he said. He suggested seeing a gastroenterologist.
The gastroenterologist got an M.R.I. of the child’s digestive system. Nothing there. He noticed the boy’s wheezing and gave him an inhaler, then referred mother and child to a rheumatologist and an infectious disease specialist.
It seemed to the parents that this had to be an infection, but the earliest they could get in to see the infectious disease doctor was the following week. For the boy’s mother, the delay now seemed intolerable.
It had been five weeks since the fevers first started. In that time, the boy had lost nearly 10 pounds. They’d seen eight doctors in two states. They’d all been very nice, thorough, thoughtful, but had no answers.
By the weekend she was desperate. The boy needed to be in the hospital. Couldn’t they see how sick he was? She couldn’t wait for the specialist. She took him to the emergency room of the big university hospital.
The E.R. doctors, like all the doctors they’d seen so far, were kind and thoughtful, and so gentle with her delicate son. But like all the other doctors, they had no answers. They prescribed another inhaler for the boy’s wheezing, since the first hadn’t helped. They also urged her to see the infectious disease specialist. His appointment was just a couple of days away.
TB or not TB?
The boy was sitting quietly between his parents watching a video on his tablet when Dr. Bazak Sharon and the infectious disease fellow he was training entered the exam room. Dr. Sharon’s first thought was that the child looked as if he had tuberculosis.
He’d seen a lot of TB in this clinic, but it was usually among immigrant families who had traveled to Minneapolis from countries where the disease was common. Like this boy, kids with TB were usually thin, sickly looking, pale and quiet. But based on what his fellow told him, the child had no exposures that would put him at risk for this disease. He’d only been out of the country once – to Canada. He’d visited the beaches of South Carolina and the deserts of Arizona, and most recently the mountains of Colorado. But TB was rare in all these locales.
Dr. Sharon introduced himself to the child, who looked up immediately and smiled. How do you feel, he asked the boy? His temperature had been recorded at 103 degrees. I feel good, he’d answered pleasantly. Does anything hurt? No.
His heart was beating rapidly – nearly 140 beats per minute, but that was probably due to the fever. There were several enlarged lymph nodes in the child’s neck and his groin, though none under his arms. Otherwise his exam was unremarkable.
Dr. Sharon had reviewed the blood tests that had already been done but wanted to see if anything had changed. And given that the only localized complaint was cough and wheezing, he wanted to get another chest X-ray.
Reviewing those studies that night, Dr. Sharon saw that the boy was slowly getting worse. He saw patients at that clinic only once a week and was reluctant to wait that long before having him seen again. He thought they needed an answer much sooner than that.
You can see the note from Dr. Sharon and his fellow here.
Dr. Sharon’s Note
The note from the patient’s visit to the hospital.
To the Hospital
Dr. Sharon called the family the next morning. He’d reached out to one of his friends and colleagues, Dr. Abraham Jacob, who could see them. They should go to the University of Minnesota Medical Center Fairview, where Dr. Jacob would orchestrate a thorough workup. That would be the fastest way to get an answer.
Based on the assessment by Dr. Jacob and his resident and the recommendations from Dr. Sharon, the team reached out to specialists in hematology-oncology and in rheumatology. And since his chest X-ray was abnormal and he had enlarged lymph nodes, they wanted to get a CT scan as well.
Dr. Jacob’s Notes
Here are the notes from the pediatrics department.
Breathing Through a Straw
It was the results of the CT scan that really got things moving. It was the middle of the day when the resident was paged by the radiologist. The pictures showed that the lymph nodes in the boy’s chest were so swollen that they were pressing on the trachea – the breathing tube – so that it was almost completely cut off. Essentially he was breathing through the equivalent of a cocktail straw.
Any additional swelling could cut off the boy’s breath completely. You can see an image from the CT scan here.
A normal trachea in a child this age is four to six times the size seen in the scan. The image added even more pressure to make a diagnosis and treat the child before he got sicker.
Solving the Mystery
A diagnosis was made within the next 24 hours. Can you figure out what the boy had, and how the diagnosis was made?
The first person to offer the correct answers to these two questions will get a copy of my book and that sense of triumph that comes from nailing the right diagnosis when it really matters.
Rules and Regulations: Post your questions and diagnosis in the comments section below. The winner will be contacted. Reader comments may also appear in a coming issue of The New York Times Magazine.