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Tag: open notes

  • Please Don’t Call My Cervix Incompetent

    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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  • Do You Really Want to Read What Your Doctor Writes About You?

    Do You Really Want to Read What Your Doctor Writes About You?

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    You may not be aware of this, but you can read everything that your doctor writes about you. Go to your patient portal online, click around until you land on notes from your past visits, and read away. This is a recent development, and a big one. Previously, you always had the right to request your medical record from your care providers—an often expensive and sometimes fruitless process—but in April 2021, a new federal rule went into effect, mandating that patients have the legal right to freely and electronically access most kinds of notes written about them by their doctors.

    If you’ve never heard of “open notes,” as this new law is informally called, you’re not the only one. Doctors say that the majority of their patients have no clue. (This certainly has been the case for all of the friends and family I’ve asked.) If you do know about the law, you likely know a lot about it. That’s typically because you’re a doctor—one who now has to navigate a new era of transparency in medicine—or you’re someone who knows a doctor, or you’re a patient who has become intricately familiar with this country’s health system for one reason or another.

    When open notes went into effect, the change was lauded by advocates as part of a greater push toward patient autonomy and away from medical gatekeeping. Previously, hospitals could charge up to hundreds of dollars to release records, if they released them at all. Many doctors, meanwhile, have been far from thrilled about open notes. They’ve argued that this rule will introduce more challenges than benefits for both patients and themselves. At worst, some have fretted, the law will damage people’s trust of doctors and make everyone’s lives worse.

    A year and a half in, however, open notes don’t seem to have done too much of anything. So far, they have neither revolutionized patient care nor sunk America’s medical establishment. Instead, doctors say, open notes have barely shifted the clinical experience at all. Few individual practitioners have been advertising the change, and few patients are seeking it out on their own. We’ve been left with a partially implemented system and a big unresolved question: How much, really, should you want to read what your doctor is writing about you?

    The debate about open notes can be boiled down to a matter of practicality versus idealism. You’d be hard-pressed to find anyone, doctor or otherwise, who argues against transparency for patients in principle. At the same time, few people I spoke with for this article believe that the new rule has been put in place all that smoothly. For care providers, the primary concern has been the trouble that can come with writing notes for a new audience. Notes, generally scribbled in shorthand incomprehensible to the unknowing eye, have traditionally served doctors, and doctors alone. They allowed physicians to stay up to date on their patients and share information with colleagues for input on cases.

    Some doctors told me they worry that open notes could result in distress for patients who read something they don’t understand, and that highly technical language could make something sound worse than it is. Oncology, for instance, can involve an onslaught of potentially concerning terminology. (Psychotherapy notes are exempt from the new rule.) Other doctors fear that valuable information can be lost if they go too far in de-jargonizing notes to make them patient-friendly. Or that de-jargonizing notes is simply unfeasible. “Let’s say you came to me with pain and pointed to your mid-clavicular line. I’d just put ‘MCL,’” says Aldo Peixoto, a nephrologist at Yale. “But if I were writing for you to understand, I’d have to say ‘pain on the top-right portion of her abdomen in the line that runs from the middle of her clavicle,’ and so on. Rather than writing four lines of prose, I could’ve used literally three letters.”

    If that sounds quibbling, consider the trade-offs. Less time for doctors can translate into less time for patients. Many clinicians already write notes well into the evening. Certainly, the pandemic hasn’t helped. Some doctors told me that if they find themselves in a dilemma of either writing notes in less-efficient, plain language or fielding worried patient calls and messages, exhausted practitioners will face yet another burden. And then there’s the matter of trust. Jack Resneck, the president of the American Medical Association, the nation’s largest professional group of doctors and medical students, told me that doctors can need time and space with patients to get them to open up and be receptive to guidance through difficult situations. If these patients were to see notes too soon, Resneck said, they might “immediately flee and not come back to see you.”

    As doctors have spent more time dealing with open notes, many have eased off their strongest objections. Some, including Resneck and the AMA, have warmed up to the new rule as certain exceptions have been granted, such as allowing doctors whose patients have parents or partners with access to their notes to omit certain details from their write-ups for privacy reasons. Other physicians seem to be coming to a somewhat awkward realization: On a practical level, many concerns about how this change affects patients are irrelevant, because most patients don’t yet know they have instant access to their notes in the first place. Every doctor I spoke with for this story told me that their patients were largely unaware. Many doctors and hospitals are not going out of their way to inform people about the new rule, so unless patients are particularly on top of shifting rules within our convoluted health-care system, they’re unlikely to encounter the notes on their own. Kerin Adelson, an oncologist at Yale, admitted she didn’t know how to find notes in her own patient portal. She spent several minutes with me on the phone fumbling through different tabs to locate them.

    Fans of open notes are frustrated that there is not a greater push for awareness. Even acknowledging that the new system has its shortcomings, many argue that the only way to make things better is to get people invested in the access they’ve recently been granted. Lydia Dugdale, a primary-care doctor at Columbia University, worries about ensuring equity. “Things like socioeconomic status, education, literacy: All of those issues affect the degree to which any given patient is going to want to read and correct and interrogate his or her health record,” she told me. Tom Delbanco, a Harvard doctor and one of the co-founders of OpenNotes, an initiative that spearheaded the push for access to doctors’ notes in the U.S., believes that the effort required to refrain from using “bad words” in notes is minor, and that it shouldn’t make any significant demands on clinicians’ schedules. Doctors who are now taking more time to write notes because of the change, he told me, “probably ought to because they’ve been writing lousy notes.”

    Open notes can be valuable for people with chronic conditions and their caregivers, who need to stay in the know. Liz Salmi, the communications and patient-initiatives director at OpenNotes, told me about pulling her full medical record eight years into dealing with brain cancer, before notes were easily and freely available. The document was 4,839 pages. To get a PDF, she said, she had to pay $15 for each DVD it was uploaded to, and her records spanned multiple discs. But the information was worth it: Having access to the record gave Salmi a way to remember all of the crucial bits of information she’d gotten piecemeal from various doctors.

    The fact that many people have no idea open notes exist doesn’t change the deeply personal questions at stake in the debate about whether the notes do more good or harm—questions that everyone must confront in one way or another in dealing with America’s medical system, whether or not they fully realize it. How much information do you truly want about your health, and how much do you trust your doctor to deliver it to you? What is a doctor’s role in informing people about their health?

    Open notes are only part of this conversation. The new law also requires that test results be made immediately available to patients, meaning that patients might see their health information before their physician does. Although this is fine for the majority of tests, problems arise when results are harbingers of more complex, or just bad, news. Doctors I spoke with shared that some of their patients have suffered trauma from learning about their melanoma or pancreatic cancer or their child’s leukemia from an electronic message in the middle of the night, with no doctor to call and talk through the seriousness of that result with. This was the case for Tara Daniels, a digital-marketing consultant who lives near Boston. She’s had leukemia three times, and learned about the third via a late-night notification from her patient portal. Daniels appreciates the convenience of open notes, which help her keep track of her interactions with various doctors. But, she told me, when it comes to instant results, “I still hold a lot of resentment over the fact that I found out from test results, that I had to figure it out myself, before my doctor was able to tell me.”

    As Americans continue to age, get sick, and navigate the health-care system, many of us may become more invested in the idea of open notes. Until they play a more widespread role in people’s lives, however, the most pressing question about whether you truly want instant access to all your medical information might be how it affects your doctor’s life. Many physicians have come around to open notes, or at least have realized that allowing patients to see what has been written about them is not always a huge bother. But the bigger question of just how quickly patients should be able to access medical information, and how soon doctors should be available to help patients process it, continues to plague physicians. The advent of immediate data sharing “has been a major problem in terms of physician quality of life, and that’s eroded across the board,” Peixoto told me. “Doctors don’t want to be connected all the time. They actually have their lives.”

    Where we have landed, then, is an in-between. Patients can read their doctor’s notes and view test results at any hour of the day, but we can access our providers only at certain times. There is likely room for refinement. Allowing a patient to select whether they receive test results from their physician or their portal, or see notes only after their doctor has had the opportunity to walk them through the terminology used, for instance, could make all the difference, some doctors told me. For now, it’s worth asking yourself whether you want to access your patient portal alone, or want to wait until you can get your doctor on the line.

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    Zoya Qureshi

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