And what’s missing from your med recs can hurt you, too.
Case study: a non-mainstream Medicaid patient with years of extensive musculoskeletal damage (among other ills), fully imaged and documented, including the surgeries involved.
She struggles for and finally gets an appointment with the pain management specialist she’s been assigned to, in order to request proper renewal of her objectively necessary pain prescription. It’s taken weeks, because the medical group says it’s the patient’s responsibility to stay on top of prescriptions and get them renewed and refilled ten days to two weeks before the patient runs out. And that if she runs out because of failing to do that, the medical group has no obligation to rush the process: she’ll just have to “wait in line”. But she’s also been warned to not bother the doctor more than three weeks ahead, and that if she goes to a hospital emergency department for even the slightest replacement supply if she runs out, she’ll be categorized as a drug-seeker, inclining the medical group to eye askance her pleas (like a beggar, as if she and the CMS aren’t paying) for appropriate treatment across the board.
But three weeks ahead, the medical group had no appointments open sooner than five weeks out. Not even a phone-appointment, because she’s required to be seen in person each time the prescription itself expires. Even when staff check the record and see that she’ll be out of medication in three weeks, and that she’s right on schedule as instructed, they can only give her that distant date. She begs them to contact her if a cancellation opens an appointment up sooner. They say she can phone every morning at 7:30 a.m. and if another patient has indeed cancelled for a date sooner than hers, she’ll be able to get that open slot … providing no one else has gotten it before her.
She phones every morning at 7:30 faithfully, meanwhile cutting her dosage to try to stretch the dwindling number of pills enough to be able to manage handling critical daily life necessities and take care of her spouse, without running out altogether, which in the past has been disastrous for them both. As pain erodes her capacities for physical effort and focused thought, “secondary” needs pile up and up, beyond even the home health/help aide’s ability to assist with, resulting in obstructions, hazards, and finally harms to all three that burden the situation further.
At last, two days before her scheduled appointment, she’s allowed to fill a cancellation. The home health/help aide drives her there; they have to leave her utterly disabled spouse alone at home, but there’s never an alternative anyway.
At this point, the patient has had no pain medication at all for several days, and has to move very carefully from the waiting room into the office, leaning heavily on her rolator, bracing herself for being expected to answer questions as coherently as a healthy patient might, and bear a physical examination routinely agonizing, with prolonged after-effects.
As usual, the appointment is quite brief: the doctor pushes and grips on several body parts to ascertain pain, asks a brusque few questions, renews the prescription, directs her to order her refill promptly so it reaches her by mail within three business days, he says — she knows better than to request being given even a few tablets from the office to bridge the gap — and chides her for “failing” to come in sooner.
A couple of weeks later, when she’s finally in manageable shape — the promptly ordered refills took five business days to be delivered, not three — she goes online to check the medical record and find when’s the date to request her next refill.
In the appointment notes, she sees these words:
“patient in no apparent distress...”
Reading other past appointment notes, she finds her lived experience almost nonexistent in them, replaced by fiction in the form of countless insinuations and pejorative assumptions extensively enough that the “documentation” seems as if about a complete stranger — an almost radically false picture of her ill-health excepting only test and radiology reports.
Gender bias in healthcare weaves a toxic thread throughout history. Take hysteria, for example, a catch-all “diagnosis” originating in ancient Egyptian and Greek medicine, widely used [into the 20th century to force “treatment” upon girls and women for “problems” objectionable principally to men.]
The Diagnostic and Statistical Manual of Mental Disorders (DSM) didn’t remove the diagnosis until <big>1980.</big>
[This history permeates] pain management for women. Even after doctors began using anesthesia during surgery in the mid-1800s, they continued to deny pain relief medications during childbirth for decades … [often] because prevailing religious beliefs suggested women should suffer during labor and delivery.
[emphasis added. — ed.]
Which explains a lot about information not revealed to the patient in our case study: treatment possibilities she was never told about, care she still doesn’t receive.
<big><big>More and more, research on professional communication about patients finds that being a person of color, female, non-majority in terms of gender or heritage, victim of stigmatized ailments, or any related traits known to physicians from observation, interview, or existing earlier records, can be hazardous to your health.</big>
And often is, the worse if you’re any combination of those disparaged identities —as our case study patient is— by engaging physician biases, false beliefs, insistent ignorance, and prejudices that play out longterm in the form of dearth of valid research at the macro level, and on individual level in terms of treatment and “care”, year after compounded year.</big>
For example, a study recently presented at the 2023 American Association for the Advancement of Science annual meeting,
examined the records of nearly 19,000 patients, paying particular attention to negative descriptions that may influence a clinician's decision-making. The data ... suggests what researchers have long speculated: Doctors are more likely to use negative language when describing a Black patient than they are a White patient. The notes provide, at times, a surprisingly candid view of how patients are perceived by doctors, and how their race may affect treatment.
[Researchers like these] are interested in how such prejudice leaves a paper trail, which can then reinforce negative stereotypes. [Moreover, because] medical notes get passed between physicians, they can affect the health of Black patients down the line.
"The medical record is like a rap sheet, it stays with you..."
Two years ago, longtime researchers reported in JAMA finding <big><big>5 major themes representing negative language and 6 representing positive</big></big> in a
qualitative study of 600 encounter notes from 138 physicians… about 507 patients. Of these patients, 350 (69%) were identified as female, 406 (80%) were identified as Black/African American, and 76 (15%) were identified as White. ... The majority of negative language was not explicit and generally fell into one or more of the following categories:
- (1) questioning patient credibility,
- (2) expressing disapproval of patient reasoning or self-care,
- (3) stereotyping...
- (4) portraying the patient as difficult,
- (5) emphasizing physician authority over the patient.
Positive language was more often more explicit and included
- (1) direct compliments,
- (2) expressions of approval,
- (3) self-disclosure of the physician’s own positive feelings toward the patient,
- (4) minimization of blame,
- (5) personalization, and
- (6) highlighting patient authority for their own decisions….
[emph. added. —ed.]
A few years earlier, in a study to
assess whether stigmatizing language written in a patient medical record is associated with a subsequent physician-in-training’s attitudes towards the patient and clinical decision-making… exposure to stigmatizing language note[s] was associated with more negative attitudes towards the patient [and reading] the stigmatizing language note was associated with less aggressive management of the patient’s pain…
[emph. added. -ed.]
Also in 2021, a study on Linguistic Bias in the Medical Records of Black Patients and Women sampled 9251 notes by 165 physicians about 3374 unique patients,
revealed three linguistic features suggesting disbelief:
- (1) quotes (e.g., had a “reaction” to the medication);
- (2) specific “judgment words” that suggest doubt (e.g., “claims” or “insists”); and
- (3) evidentials, a sentence construction in which patients’ symptoms or experience [are] reported as hearsay.
We used natural language processing to evaluate the prevalence of these features in the remaining notes and tested differences by race and gender, using mixed-effects regression to account for clustering of notes within patients and providers….
...Most patients were identified as Black (74%) and female (58%). Notes written about Black patients had higher odds of containing at least one quote ... and at least one judgment word ... and used more evidentials ... compared to notes of White patients. Notes about female vs. male patients did not differ in terms of judgment words or evidentials but had a higher odds of containing at least one quote...
A 2022 study
used machine learning to analyze electronic health records (EHRs) from an urban academic medical center and to investigate whether providers’ use of negative patient descriptors varied by patient race or ethnicity. We analyzed a sample of 40,113 history and physical notes (January 2019–October 2020) from 18,459 patients for sentences containing a negative descriptor (for example, resistant or noncompliant) of the patient or the patient’s behavior. We used mixed effects logistic regression to determine the odds of finding at least one negative descriptor as a function of the patient’s race or ethnicity, controlling for sociodemographic and health characteristics. Compared with White patients, Black patients had 2.54 times the odds of having at least one negative descriptor in the history and physical notes. Our findings raise concerns about stigmatizing language in the EHR and its potential to exacerbate racial and ethnic health care disparities….
<big><big>A 2020 United Nations global report found that “Almost 90% of Men/Women Globally Are Biased Against Women”.</big></big> Healthcare personnel are among the 100% total, and it turns out that doctors, nurses, medical technicians, researchers, administrators — all can hold biased views … regardless of their own gender, identity, or heritage.
Even if they themselves have been subjected to microaggression, implicit bias, discrimination, harassment, gaslighting, obstructionism, dismissal, contradictory expectations, and surreally targeted demands during their medical education, their residencies, and early years in practice.
Patients can too. To their detriment.
In two reports from 2018 — “Brave Men” and “Emotional Women”: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain. and the role of “gender and profession [in] gender role expectations of pain in health care professionals” — the research finds that healthcare professionals as a group tend to believe that women exaggerate about pain. And that women’s pain is more about mental than physical ill-health. Whether due to a mental health issue approaching medical Stockholm syndrome, or to ingrained patriarchy, or to fear of repercussions from disagreeing, or being gaslighted, female patients have often believed it too.
<big><big>Professionally institutionalized microaggressions about minority persons and women have the effect of larding medical records with false data</big></big>. Which can dangerously skew decisions made by the professionals for patient care, e.g., what diagnosis they reach, what treatments they will and won’t tell you about, how thoroughly they inform you in general, and what care they can provide,
With so much research now utilizing patient medical records, all that false data threatens to proliferate into the future, invalid conclusions becoming cemented as criticism surrounding these issues continues to lag behind.
Given how difficult it is for even the best-inclined professionals to practice medicine under current conditions of worsening physician shortage and corporate-style profit-taking from above, our doctors are kind of in the trenches alongside us. They possess little alternative except to rely upon the “rap sheets” they may not realize is all they’ve got, unless patients scrutinize the records and press for corrections…
...which can be very, very difficult to achieve, and risky to even attempt, because it confronts doctors and institutions with the feared implication, “You’ve made mistakes; you’re wrong.”
Question: what is men’s stake in this conflict?
Knowledge-informed bias
When existing evidence {sic} suggests a given health condition affects people of a certain gender at higher rates, this condition may go undiagnosed in people of other genders [hence untreated]...
[Thus] Men aren’t immune. For example, mental health conditions, particularly depression and anxiety, are more likely to go undiagnosed in men due to a combination of stereotypes about masculinity and a lack of awareness around how mental health symptoms might show up differently in men.
Slowly, professionals along with patients are coming to realize that biases, prejudices, and counterfactual assumptions in any and every kind of paper trail threaten us all ... as a society, in the science we profoundly rely upon, and as individuals. Where medicine is involved, that includes physicians being at risk themselves, because sooner or later even physicians need medical care, the same as all the rest of us, for our families, our communities, and ourselves.
<big><big>“Of all forms of inequity, injustice in health care is the most shocking and inhuman.” </big>
— Martin Luther King, Jr., National Convention of the Medical Committee for Human Rights, Chicago, 1966</big>
<small>A FEW MORE SOURCES</small>:
- Duke University Recognizing, Addressing Unintended Gender Bias in Patient Care
- Center for Health Care Strategies Words Matter: Strategies to Reduce Bias in
Electronic Health Records
- Science News Racial bias can seep into U.S. patients’ medical notes. ‘ “Refused” and “unwilling” are among the words more likely to appear in Black patients’ charts...’
- Wiley (editorial) Words matter: Labelling, bias and stigma in nursing
- (US) Agency for Research and Quality How to reduce stigma and bias in clinical communication: a narrative review.
- Salon.com Embedded bias: How medical records sow discrimination. “Discrimination and prejudice in medical records isn't going away — and it affects patient health”
- AMA Journal of Ethics How Cisgender Clinicians Can Help Prevent Harm During Encounters With Transgender Patients
- AAMC MedEd portal Words Matter: An Antibias Workshop for Health Care Professionals to Reduce Stigmatizing Language
- obgyn.utoronto.ca Weight bias, stigma, and discrimination in women’s healthcare.
- Healthline.com Gender Bias in Healthcare Is Very Real — and Sometimes Fatal
- American Journal of Men's Health Reviewing the Assumptions About Men’s Mental Health: An Exploration of the Gender Binary
- empr.com Language in Patient Records Can Convey More Than Medical History
- aauw.org Barriers & Bias: The Status of Women in Leadership. “Where Are the Women? Despite record-breaking numbers of women elected to public office in 2018 and increasing public attention around gender equality in Hollywood, women remain underrepresented in senior leadership roles across industries.”
- The Joint Commission Quick Safety 23: Implicit bias in health care. “The purpose of this issue of Quick Safety is to discuss the impact of implicit bias on patient safety. Bias in clinical decision-making does result in overuse or underuse problems that can directly lead to patient harm.”
- Practical Pain Management Gender Bias and the Ongoing Need to Acknowledge Women’s Pain Inside the history of sex, gender, women, and pain - a perspective from the Society for Women's Health Research
- US Department of Justice dot gov Understanding Bias: A Resource Guide
- UCSF.EDU “I would never want to have a mental health diagnosis on my record”: A survey of female physicians on mental health diagnosis, treatment, and reporting.
- Medical gaslighting “is an informal term[29-Washington Post] that refers to patients having their real symptoms dismissed or downplayed by medical professionals, leading to incorrect diagnoses. Women and racial minorities are more likely to be affected by the phenomenon.[30][31-Journal of Women's Health & Gender-Based Medicine.][32-The American Journal of the Medical Sciences]
- Medical gaslighting” is when doctors or other medical practitioners blame a patient's symptoms on psychological factors or deny the patient's illness entirely, for example wrongly telling patients that they are not sick” in order to lead patients to doubt their own judgement and sense of reality.
- wmnHealth.org Medical gaslighting is real - and here’s how to fight it.
- Counseling Resource.com Gaslighting as a Manipulation Tactic: What It Is, Who Does It, And Why
- Canadian Family Physician The toxic power dynamics of gaslighting in medicine