Tag: doctor’s office

Hospitals Have Gotten Too Nice

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The last time I stepped on a plane for vacation, for fun, was more than three years ago. I haven’t been able to visit California, whose coast I adore. Nor Rome, where my husband and I lived for some time.

And yet, I’m told, I’ve been on a journey. Two journeys, actually: First, a “traumatic-brain-injury journey,” experienced at Johns Hopkins Hospital after I banged my head and developed trouble with my balance and gait. More recently, I’ve been a traveling companion on my husband’s “cancer journey” at Memorial Sloan Kettering, in New York City.

These are two of the highest-ranked hospitals in the country. The care was excellent in both places. But neither of these journeys resembled our bike ride in Ireland or the wine-tasting trip in Sonoma a few years before.

So much of being seriously ill has been rebranded in American health care as a kind of adventure. Experts speak of stroke journeys. Hospital systems invite people on kidney-transplant journeys. The language has trickled down into advertising: Take a hair-loss journey or a weight-loss journey (newly popular thanks to Wegovy and similar drugs). The heart-failure journey even comes with a map.

A map? But on these journeys, you don’t get to go anywhere—except maybe the hospital or doctor’s office, which is likely, too, to have bought into the travel concept. In the past two decades, American hospitals have gotten into the business of hotel-like hospitality (illness can be fun!) rather than confine themselves to the business of disease (what a downer). And although the care might stay solid, the focus on luxurious amenities and the fancy new buildings that house them is one of the factors that have helped send costs for patients soaring that much higher, to prices well above those in other developed countries.

Read: What financial engineering does to hospitals

In this version of health care, I’m no longer a patient. I’m a client, a customer, or (worse) a guest, no matter that I didn’t choose this journey cum illness. I appreciate a little luxury and privacy as much as the next person. But, at a time when Americans’ life spans are getting shorter and four in 10 adults say they’ve delayed or gone without necessary care because of cost, is it worth it?

In recent years, tight budgets, staffing shortages, and burnout have hit American hospitals. At the same time, many health centers in the U.S.—including the most prestigious ones, and even some community hospitals—have morphed into seven-star hotels. New hospital buildings, such as recent projects at the University of Michigan Medical Center and Valley Hospital in Paramus, New Jersey, offer all-private rooms, in many cases with couches and flatscreen TVs. A hospital might now boast about its views, high-thread-count sheets, or food provided by a Michelin-starred chef.

Those commissioning and designing these pavilions cite research showing that private rooms are better for healing, because they offer a better chance at sleep and a lower chance of infection. (Actually, the evidence is pretty murky.)

But we’re suckers for this type of thing, and the industry knows that even small comforts can make us feel better, regardless of whether we’re actually getting better. Back in 2008, researchers at the National Bureau of Economic Research estimated that a hospital investing in amenities would increase demand by 38 percent, whereas a similar investment in clinical quality would lead to only a 13 percent increase. More recently, hospital executives told The Boston Globe that the main reason hospitals have moved in this direction is that “people’s expectations have changed,” and it creates a “competitive advantage” that can be marketed to potential customers.

From the archives: The trouble with hospitals

And so the Mayo Clinic now offers complimentary concierge services, which can help with recommending nearby restaurants and finding pet care. I think that’s the hospitality version of what used to be called the hospital “help desk,” whose function was merely to explain to visitors how to get to patient rooms. Cleveland Clinic, which employs a team of curators, owns one of the largest contemporary-art collections in the region, and its leaders see that collection as one tool for “positively affecting patient outcomes.” Patients at Cedars-Sinai can experience its “therapeutic art collection” of Chagalls, Picassos, and Oldenburgs.

Hospital food has gotten so good that in some area,s people go to their local hospital for haute cuisine rather than medical needs. And when you look at the numbers on your hospital bill, remember that all of this adds up. For the amount that American patients (or their insurers) pay for some luxury hospital journeys, they could sign up for a Virgin Galactic suborbital joy ride.

This transformation from hospital to hospitality has filled up hospital C-suites with chief experience officers, whose function is to “manage patients’ experiences throughout their healthcare journey,” as described by the publication HealthTech. The Cleveland Clinic was the first major academic medical center to add one, back in 2007; now some health systems hire for this and similar positions directly from the hospitality industry, picking people who’d previously been managers at a Ritz-Carlton or a Trump hotel.

The American Hospital Association acknowledges and defends the transformation. “These are not just ‘nice to haves,’” Nancy Foster, AHA’s vice president of quality and patient-safety policy, wrote to me in an email. “Actions hospitals can take to reduce stress and provide other psychological support can have a meaningful impact on one’s physical and behavioral health, including the ability to recover more rapidly.” But pretending that illness is an Abercrombie & Kent safari is actually harmful. These amenities have a cost, and they are not worth nearly what we’re paying for them as we’re billed for $100,000 joint replacements and $9,000 CT scans. Room charges in many hospitals can exceed $1,000 a night. And “facility fees” for outpatient procedures and even office visits can reach hundreds of dollars, and simply don’t exist elsewhere. A hospital’s function is to diagnose and to heal, at a price that sick people can afford. I dream of a no-frills Target- or Ikea-like hospital for care.

That doesn’t mean hospitals need to resemble prisons. Hospitals certainly have room to improve on breakfasts featuring Lilliputian plastic cups of orange juice and rubbery eggs. But to understand one of the many reasons Americans pay so much for health care, consider this: The best hospitals in Europe are utilitarian structures that most resemble urban high schools. When I got stitches for a deep cut in my forehead in Gemelli Hospital—where the pope gets health care—I sat on a gurney in a big dark room with other patients.

Instead of providing free coffee and a piano in a soaring, art-filled marble lobby, how about focusing on the very basic things that health systems in the U.S. should do, but—in my experience—in many cases do not, like making it easier for patients to schedule appointments? Shortening the now lengthy wait times to see physicians who take insurance plans? Paying for adequate staffing on nights and weekends, so patients don’t linger in bed pointlessly for two days until social workers return on Monday? Or ending those two-day stays in emergency rooms when all inpatient beds are full? (Hotels aspire to run at full occupancy to maximize revenue; hospitals, I’d argue, should not.)

This winter, I’m planning a journey where I’m looking forward to some good food and art. We haven’t yet determined the exact destination, but it will not be a U.S. hospital.

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Elisabeth Rosenthal

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November 17, 2023
Please Don’t Call My Cervix Incompetent

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If you haven’t been pregnant, you’d be forgiven for thinking the language of pregnancy is all baby bumps, bundles of joy, and comparisons to variously sized fruits. But in the doctor’s office, it’s a different story. The medical lexicon for moms-to-be can be downright harsh. Case in point: the phrase geriatric pregnancy, which, until recently, was used to refer to anyone pregnant after their 35th birthday.

This unfortunate term is thought to stem from a concept that dates back to the 1970s, when amniocentesis, a procedure to screen for genetic abnormalities, was becoming routine. That year, the National Institutes of Health identified 35 as the age at which the risk that the test would harm the fetus was roughly equal to the chance of a fetus being born with Down’s syndrome. In the four-plus decades since, advancements in screening technology have made that calculation essentially obsolete—and the idea that your 35th birthday is some sort of cliff-of-no-return absurd. Moms, for their part, always hated the phrase: When Jamila Larson, a 49-year-old mother of two in Hyattsville, Maryland, was called “geriatric” by a midwife in 2011, “it felt like a gut punch,” she told me.

Though you’ll still hear it occasionally, this term has (thankfully) been on its way out for a while. One reason is changing demographics. As more and more women give birth after turning 35—in 2020, about one in five babies in the United States was born to a mom who had passed that birthday—labeling them as particularly “old” no longer makes sense. Last August, the American College of Obstetricians and Gynecologists (ACOG) announced that its preferred terminology is now “pregnancy at age 35 years or older”—or, even better, that doctors and researchers should simply indicate patients’ age in five-year increments starting from the age of 35.

This is how progress works: When a medical term outlasts its usefulness, we thank it for its service and move on. So it may surprise you to learn that a litany of dubiously appropriate and medically inaccurate words are still used to describe pregnancy and childbirth. Over the past decade, the field of medicine has acknowledged that language has the power to perpetuate bias among doctors, and worked to scrub its vocabulary of such terms, including schizophrenic (which reduces a person to a stigmatized disease), drug abuser (which reduces a person to their addiction), and sickler (a derogatory term for someone with sickle-cell disease). And yet, doctors continue to describe women’s bodies using charged terms such as hostile uterus, incompetent cervix, and habitual aborter—words that arguably sound worse than the now-shunned geriatric pregnancy. Why do some words evolve, while others insist on haunting moms’ medical charts like ghosts of medicine past?

[Read: The culture war over ‘pregnant people’]

Geriatric pregnancy got a spurt of publicity in 2021, when the makers of the fertility and motherhood app Peanut turned their attention to the minefield of pregnancy language. After a video of a distraught woman whose doctor told her she would be “geriatric” if she were to get pregnant garnered attention on the app, Peanut launched a campaign to come up with more neutral-sounding alternatives to existing medical language. That April, they released a glossary of proposed replacements. Still, more attention from the public doesn’t always translate into institutional action: Although 20,000 people have downloaded Peanut’s glossary, there hasn’t been any official movement within medicine to do away with the original terms.

Across the U.S., doctors are still doling out diagnoses that sound not only archaic, but downright weird. Many of these terms are enshrined in the global catalog of diseases that doctors use to report procedures to insurance companies, known as the ICD-11. The latest version of that glossary, released in 2022, still includes the phrase elderly primigravida, which is basically a synonym for geriatric pregnancy. In 2016, during her second pregnancy, Larson’s notes read “elderly multigravida”—meaning she was both over 35 and had been pregnant before.

Or consider incompetent cervix, a term that is in both the ACOG dictionary and the ICD-11. Really, it means a pregnant person’s cervix has dilated before the pregnancy is complete, which can lead to premature birth or miscarriage. Meena Khandelwal, an ob-gyn and the director of research for obstetrics and gynecology at Cooper University Health Care in Camden, New Jersey, told me she avoids using the phrase in front of patients (she sometimes uses weak cervix instead, though she isn’t sure that it’s much better). But because incompetent cervix is entrenched in insurance codes and her hospital’s record-keeping system, the phrase is likely to show up in patients’ notes anyway.

[Read: She got pregnant. His body changed too.]

To be sure, communicating that the cervix has opened early is crucial; it prompts doctors to monitor the situation using ultrasound, to temporarily sew the cervix closed, or to try another treatment. Providers need to be able to inform one another about patients quickly and clearly; one could argue that is a much more important function of medical jargon than protecting patients’ feelings. The point of language evolution is not to make words so gentle that they become meaningless.

But in many cases, the existing language is less clear and precise than gentler alternatives. For example, failure to progress—a general term meaning that labor has lasted longer than expected—says nothing about the reason the labor is slow. And calling a patient “geriatric” offers less information than simply stating whether she is in her 30s, 40s, or 50s. The outdated words even have the potential to worsen patient outcomes: a 2018 study on physician bias found that when doctors read stigmatizing language in a patient’s charts, they tended to have more negative attitudes toward the patient and treat their pain less aggressively. Besides, “incompetent” is a strange way to describe whether a cervix is open or closed. It makes it sound like this organ should be worried about its next annual review.

This odd quality unites many pregnancy-related terms: They make it sound as if the pregnant person, or their body part, could have chosen a different path. When you are told your uterus is being “hostile” or are accused of “failure to progress,” it’s hard not to feel like you’ve somehow failed the assignment. “It sends a message of ‘You could be normal, but you’re not. You’re not working with us here,’” says Kristen Syrett, an associate professor of linguistics at Rutgers University. Even geriatric pregnancy, which doesn’t explicitly apply blame, seems to suggest that a mom-to-be has knowingly brought more risk upon her unborn child by choosing pregnancy “later” in life.

[Janice Wolly: My first pregnancy]

Many moms told Peanut that the most devastating label they encountered was habitual aborter. That term usually refers to someone who experiences multiple miscarriages before 20 weeks of pregnancy, a condition that affects 1 to 2 percent of women. (Its cousin is spontaneous abortion, which means such a miscarriage has happened once). From a purely medical perspective, abortion refers to any procedure that terminates a pregnancy, and includes procedures to empty the womb after a miscarriage. But in layman’s terms, it has come to mean a chosen termination of a pregnancy. That, plus the implication that aborting is a bad habit you can’t seem to break, made the term feel particularly inappropriate. “It’s really horrific if you think about it,” says Somi Javaid, an ob-gyn and the founder of the health-care company HerMD, who consulted on the Peanut project.

This sense of blame becomes more acute when you consider that for many people, reproductive organs are intimately tied to a sense of identity and self-worth—at least compared with, say, the kidneys. In the context of wanting a child, it’s difficult to hear that your uterus is “hostile” or your cervix is “incompetent” without thinking that those terms apply to your whole self. Even physicians can be taken aback: When Javaid was in her 20s, her own doctor deemed her “infertile” in her notes on account of her “old” uterus—meaning that its lining had thinned, a side effect from a fertility medication she was taking. “It felt like being slapped in the face,” she told me. “The impact of the word was not muted by my knowledge at all.”

Medical terms can, and do, change. But usually the field is responding to larger shifts in the culture, rather than leading the charge. That’s what happened with the phrase pregnant women, which organizations including the ACLU and the CDC have been incrementally phasing out in favor of pregnant people, a term that has sparked vigorous debate about inclusive language and feminism. Last February, ACOG followed suit, announcing that it would “move beyond the exclusive use of gendered language” to better encompass the fact that people of all genders can become pregnant.

[Helen Lewis: Why I’ll keep saying ‘pregnant women’]

With geriatric pregnancy, the change was likely more bottom-up, starting with doctors themselves. After all, for many, it was personal: The length and intensity of medical training increases the odds that doctors will have children later than other women—that they will be, in their own language, geriatric moms, says Monica Lypson, a vice dean at Columbia University’s medical school who researches equity and inclusion. Lypson was deemed “geriatric” when she was pregnant at age 36—a choice of words she found “jarring” as a patient.

Perhaps because incompetent cervix, habitual aborter, and the like refer to conditions that aren’t so common, many providers don’t realize just how hurtful they can be. Ariel Lefkowitz, an internal-medicine physician who cares for patients with pregnancy complications in Toronto, told me that he used to think of failure to progress the same way as he thought of kidney failure or heart failure. He didn’t notice the negative connotations until his wife, Sarah Friedlander, started training to be a birth educator and pointed them out. Now he sees that “it’s a lot more loaded, it’s a lot more personal,” he said.

That realization pushed him to think harder about the bias embedded in medical language in other fields, such as failure to cope. “We’re so medicalized and supposedly neutral and in this clinical environment,” said Lefkowitz, who in 2021 co-wrote an editorial in the journal Obstetric Medicine on the importance of inclusive language in obstetrics. “It’s very easy to become numb to the ridiculous ways in which we speak.”

The outdated terms that are currently stuck in the ICD-11, doctors’ offices, and the pages of medical journals may yet change. More doctors are recognizing that how patients perceive their words can have real impacts on health outcomes, says Julia Raney, a primary-care provider for adolescents who has created workshops on using mindful language in clinical settings. Accordingly, medicine is moving toward more person-centered care, including a focus on concrete risks rather than on blame and stereotypes. For instance, in her work with teens, Raney will note that they have a BMI in the 95th percentile rather than refer to them as simply “obese.” The goal is not to shield the patient from reality, but to better define their medical needs. Like ACOG’s move to designate moms as “35–39” or “40–44” rather than “of advanced maternal age,” this has the double benefit of being both less judgmental and more medically precise.

[Anya E. R. Prince: I tried to keep my pregnancy secret]

Doctors also have new reasons to be careful with their language. Since April 2021, an “open notes” law has given patients the right to freely and electronically access just about everything their doctors write about them. While the rule is still largely unknown to patients, open notes can make doctors more conscious (and, sometimes, anxious) about how what they write could affect their patients. “I think we’re all aware of that when we write anything,” Steve Lapinsky, an editor in chief of the journal Obstetric Medicine, told me. This increased transparency, he said, might just be the kick medicine needs to accelerate the pace of language change and do away with terms like incompetent cervix once and for all.

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Rachel E. Gross

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January 25, 2023
Is Cord-Blood Banking Worth It?

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In the fall of 1988, Matthew Farrow, a 5-year-old boy with a rare blood disorder, received the world’s first transplant of umbilical-cord blood from a newborn sibling. It worked: Farrow was cured. This miraculous outcome broke open a whole new field in medicine—and, not long after, a whole new industry aimed at getting expecting parents to bank their baby’s umbilical-cord blood, just in case.

These days, in fact, being pregnant means being bombarded at the doctor’s office and on Instagram with ads touting cord blood as too precious to waste. For several hundred dollars upfront, plus a storage fee of $100 to $200 every year, the banks’ ads proclaim, you could save your child’s life. Cord-blood banking has been likened to a “biological insurance policy.”

In the U.S., the two biggest private cord blood banks are Cord Blood Registry and ViaCord. Together, they have collected more than 1 million units. But only a few hundred units of this privately banked cord blood have ever been used in transplant, the great majority by families who chose to bank because they already had a child with a specific and rare disorder treatable with transplant. For everyone else, the odds of using privately banked cord blood are minuscule—so minuscule that the American Academy of Pediatrics (AAP) recommends against private banking. It does make an exception for families with that disease history. “But that’s a rare circumstance,” says Steve Joffe, a pediatric oncologist and ethicist at the University of Pennsylvania, “and not one that anybody is going to build a successful business model around.”

ViaCord and Cord Blood Registry do offer free services for families in which someone has already been diagnosed with a condition treatable with cord blood. In general, the companies reiterated to me, cord blood does save lives and they are simply providing an option for families who want it.

But the marketing also gives the impression of much more expansive uses for cord blood. The private banks’ websites list nearly 80 diseases treatable with transplant—an impressive number, though many are extremely uncommon or closely related to one another. (For example: refractory anemia, refractory anemia with ringed sideroblasts, refractory anemia with excess blasts, refractory anemia with excess blasts in transformation.) They have also recently taken to highlighting the promise of still-unproven treatments: Temporary infusions of cord blood, they say, could eventually treat more common conditions such as cerebral palsy and autism. Video testimonials feature parents talking excitedly about the potential of cord blood for their children. But the evidence isn’t there yet—and may never appear. Nonetheless, says Paul Knoepfler, a stem-cell scientist at UC Davis, “the cord-blood companies seem to be trying to expand their base of potential customers.”

The initial exuberance around cord blood came from a real place. The blood left over in umbilical cords is replete with cells that have the special ability to turn into any kind of blood, including red blood cells, which carry oxygen, and white blood cells, which make up the immune system. Adults have stem cells in their bone marrow and blood—which can also be used for transplant—but those in a baby’s umbilical cord are more immunologically naive. That means they are less likely to go awry and attack a recipient’s body. “They don’t cause as much havoc,” says Karen Ballen, an oncologist at the University of Virginia. This allows doctors to use cord blood that matches only four out of six immunological markers.

Because cord blood is so valuable, publicly run banks have been collecting donations since the 1990s. Despite amassing fewer units overall, public banks worldwide have provided 30 times as many units of blood for treatment—and saved more lives—than private ones, because they are accessible by any patient in need. Although the AAP recommends against private banking, it does recommend donating to public banks.

One appeal of private banking, though, as the companies highlight, is that the cells in a baby’s umbilical cord are a perfect match for them in later childhood or adulthood. But this is usually irrelevant: In most of the diseases that can be cured by a cord-blood transplant, doctors would, for medical reasons, not use the patient’s own cells. In cases of inherited disorders such as sickle cell anemia, for example, a child’s own cord-blood stems have the same problematic mutation. For children with one of many types of leukemia, the concern is that cord blood could contain leukemia-precursor cells that cause the cancer to reappear; in addition, donor blood-stem cells are better because they can mop up remaining leukemia cells. Doctors would “never” use banked cord blood from a child with these types of leukemia, says Joanne Kurtzberg, a pediatrician and cord-blood pioneer at Duke University, who helped treat Farrow when he was a young boy.

When privately banked cord blood is used in transplants, it is more likely to go to a sibling. Genetically, siblings have about a 25 percent chance of being perfect matches for each other. The chances of finding a suitable match among unrelated bone-marrow or cord-blood donors from a public bank, on the other hand, range from 29 to 79 percent, depending on one’s ethnic background. (The majority of donors are white, so it’s highest for white patients.) In any case, not banking a matched sibling’s cord blood doesn’t foreclose the possibility of a transplant, because that sibling can still donate bone marrow. “I often encounter families who have some guilt around not storing the cord blood, and I will point out, ‘Well, your donor child that matches our patient is still here,’” says Ann Haight, a pediatric hematologist and oncologist at Emory University.

Even if a baby’s cord blood is banked, there’s no guarantee that it will contain enough cells for transplant. In fact, most may not: Public banks only keep 5 to 40 percent of their donations, as the rest don’t meet their standards. Private banks will save much smaller samples, which they argue serve a different purpose. Whereas public banks are looking for large samples that are mostly likely to be used for transplant, says Kate Giradi, the director of medical and scientific affairs at ViaCord, “when families are banking with us, this is that child’s only cord, so our threshold is way lower.”

Another reason to bank these smaller samples, a spokesperson for Cord Blood Registry pointed out, is that they can still be used for experimental infusions treating conditions such as cerebral palsy and autism. (About 80 percent of units released by CBR have been used this way, as have about half from ViaCord.) The private banks partner with researchers, such as Kurtzberg at Duke, who are running clinical trials to test these treatments. The theory goes that cells from cord blood can make it to the brain, where they might have some neuroprotective role—but the mechanism remains unknown, and the effects are not entirely clear. As Kurtzberg told me, “The therapy is not proven.”

The current state of cord-blood science might be summed up thus: Proven uses are very uncommon, and unproven uses are, well, unproven. Of course, a future discovery could lead to a real breakthrough in the use of stem cells from cord blood—an idea private banks trade on. Who knows what might be in store for cord blood later, when your baby is 30, 50, 70 years old? In a recent Cord Blood Registry survey of new parents, a spokesperson told me by email, 45 percent named “belief in future treatments” as the primary reason for banking their child’s cord blood and tissue. Knoepfler, the stem-cell scientist, notes that scientists have been excited for decades about the promise of stem cells. But translating interesting results in the lab to a doctor’s office, he says, “is really much harder than many of us realized. I include myself in that.”

Medical discoveries have actually changed the ways cord blood is used over years, but they have so far resulted in less use of cord blood. In the past several years, doctors have refined a protocol to use half-matched donors in transplants. Doctors generally get more cells from these donors than from an infant’s banked cord blood, which means the transplants “take” more quickly and the patient spends less time in the hospital. For this reason, cord blood has been falling out of favor. Public banks have started scaling down their collections; the New York Blood Center, which had launched the world’s first public bank, recently stopped collecting new donations. How cord blood gets used in the future is still unknown.

More than 30 years ago after Kurtzberg first treated Farrow, she is still in touch with him. He’s 39 now, and doing well. Having watched cord banking grow and evolve over the years, she remains a proponent of public banking and the possibilities ahead. When it comes to private banks, however, she says, “I don’t think it’s a necessity. I think it’s nice to have if you can do it.” There isn’t much harm in private banking, after all, as long as parents can afford the several thousand dollars over their child’s lifetime.

Afford might be the key word here. The ads for cord-blood banking feel a lot like those for any number of “nice to have” baby products aimed at anxious parents, be they organic diapers or BPA-free wooden toys tailored to your child’s age and cognitive development. If anything, the stakes of cord-blood banking are higher than anything else you might choose to buy. The opportunity only comes around “once in a lifetime,” and it could literally save your child’s life—even if the chances of that are very, very small. “It’s playing to parental guilt and the desire for parents to have healthy children and do whatever they can for their kids,” says Timothy Caulfield, a health-law professor at the University of Alberta who has studied cord-blood banks. “There’s a huge market based on exactly that.”

It’s telling, perhaps, that Cord Blood Registry ran a giveaway of $20,000 worth of baby products this summer. The curated package of luxury “baby essentials” resembled the registry of parents who want the best for their kid, and can afford it. Included were a Snoo smart bassinet ($1,695), an Uppababy stroller and car seat ($1,400), Coterie diapers ($100 for a month’s supply, guaranteed to be “free of fragrance, lotion, latex, rubber, dyes, alcohol, heavy metals, parabens, phthalates, chlorine bleaching, VOCs, and optical brighteners”), and, of course, a lifetime of cord-blood and tissue banking ($11,860).

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Sarah Zhang

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October 17, 2022