Yves here. My first GP, who was board certified in internal medicine and cardiology, was chatty and would often complain to me how women were seldom given as many diagnostics for heart disease as men, as if having more estrogen somehow made that impossible. In fact, heart disease is the #3 cause of death for women aged 20-44. That’s a minor example of the misdiagnosis risk described below.
While this piece gives a profile of the problem, it provides no advice to patients as to what to do. In fact, it reinforces the idea that they are powerless: “My doctor didn’t listen.”
Of course, one problem is that doctors are likely to be particularly disinclined to listen to patients that are less educated and/or from the wrong class. That overlaps with race but is not just a function of race. For instance, I have a friend who is a very successful businesswoman, brought up kids who went to Ivy League schools, but has a thick Southern accent and does not affect speech that goes with her level of smarts (playing dumb was a big advantage in her male-dominated industry). She recently was sent to the ER by her regular doctor (an over-reaction by them) and was patronized and abused verbally by the ER docs on the incorrect assumption that she was a yahoo.
I don’t get much of that but I have the luxury of having an insurance plan that does not lock me into a network or GP gatekeeping, so I can (and sometimes have had to) shop for doctors until I find one who has the right balance of sensible but rigorous when needed. Not being able to fire your doctor sets patients up for indifference or worse. And even if you have a friendly policy or are a very big network, it is tiring and time consuming to search for practitioners.
Even with that advantage, I found myself continuing to go to New York for regular care when I was in Alabama, clearly not a great situation cost and practicality-wise, because the local doctors were not so hot: very unwilling to listen to women, particularly direct women…and I could not get certain tests done in Birmingham that you could get done on an outpatient basis in NYC and pretty much any normal-ish non-podunk location (despite Birmingham having the best med school in the South). IM Doc confirmed that these tests should be available and I could have gotten them done in even the very very small city in which he practiced. “They just do not value women’s health like they should in the Deep South.”
So it appears there actually are care deserts for women. Imagine what it’s like to be black in a not-moneyed part of town.
Any reader advice very much appreciated.
By Liz Szabo, a former senior correspondent for KFF Health News. Originally published at KFF Health News
Charity Watkins sensed something was deeply wrong when she experienced exhaustion after her daughter was born.
At times, Watkins, then 30, had to stop on the stairway to catch her breath. Her obstetrician said postpartum depression likely caused the weakness and fatigue. When Watkins, who is Black, complained of a cough, her doctor blamed the flu.
About eight weeks after delivery, Watkins thought she was having a heart attack, and her husband took her to the emergency room. After a 5½-hour wait in a North Carolina hospital, she returned home to nurse her baby without seeing a doctor.
When a physician finally examined Watkins three days later, he immediately noticed her legs and stomach were swollen, a sign that her body was retaining fluid. After a chest X-ray, the doctor diagnosed her with heart failure, a serious condition in which the heart becomes too weak to adequately pump oxygen-rich blood to organs throughout the body. Watkins spent two weeks in intensive care.
She said a cardiologist later told her, “We almost lost you.”
Watkins is among 12 million adults misdiagnosed every year in the U.S.
In a study published Jan. 8 in JAMA Internal Medicine, researchers found that nearly 1 in 4 hospital patients who died or were transferred to intensive care had experienced a diagnostic error. Nearly 18% of misdiagnosed patients were harmed or died.
In all, an estimated 795,000 patients a year die or are permanently disabled because of misdiagnosis, according to a study published in July in the BMJ Quality & Safety periodical.
Some patients are at higher risk than others.
Women and racial and ethnic minorities are 20% to 30% more likely than white men to experience a misdiagnosis, said David Newman-Toker, a professor of neurology at Johns Hopkins School of Medicine and the lead author of the BMJ study. “That’s significant and inexcusable,” he said.
Researchers call misdiagnosis an urgent public health problem. The study found that rates of misdiagnosis range from 1.5% of heart attacks to 17.5% of strokes and 22.5% of lung cancers.
Weakening of the heart muscle — which led to Watkins’ heart failure — is the most common cause of maternal deathone week to one year after delivery, and is more common among Black women.
Heart failure “should have been No. 1 on the list of possible causes” for Watkins’ symptoms, said Ronald Wyatt, chief science and chief medical officer at the Society to Improve Diagnosis in Medicine, a nonprofit research and advocacy group.
Maternal mortality for Black mothers has increased dramatically in recent years. The United States has the highest maternal mortality rate among developed countries. According to the Centers for Disease Control and Prevention, non-Hispanic Black mothers are 2.6 times as likely to die as non-Hispanic white moms. More than half of these deaths take place within a year after delivery.
Research shows that Black women with childbirth-related heart failure are typically diagnosed later than white women, said Jennifer Lewey, co-director of the pregnancy and heart disease program at Penn Medicine. That can allow patients to further deteriorate, making Black women less likely to fully recover and more likely to suffer from weakened hearts for the rest of their lives.
Watkins said the diagnosis changed her life. Doctors advised her “not to have another baby, or I might need a heart transplant,” she said. Being deprived of the chance to have another child, she said, “was devastating.”
Racial and gender disparities are widespread.
Women and minority patients suffering from heart attacks are more likely than others to be discharged without diagnosis or treatment.
Black people with depression are more likely than others to be misdiagnosed with schizophrenia.
Minorities are less likely than whites to be diagnosed early with dementia, depriving them of the opportunities to receive treatments that work best in the early stages of the disease.
Misdiagnosis isn’t new. Doctors have used autopsy studies to estimate the percentage of patients who died with undiagnosed diseases for more than a century. Although those studies show some improvement over time, life-threatening mistakes remain all too common, despite an array of sophisticated diagnostic tools, said Hardeep Singh, a professor at Baylor College of Medicine who studies ways to improve diagnosis.
“The vast majority of diagnoses can be made by getting to know the patient’s story really well, asking follow-up questions, examining the patient, and ordering basic tests,” said Singh, who is also a researcher at Houston’s Michael E. DeBakey VA Medical Center. When talking to people who’ve been misdiagnosed, “one of the things we hear over and over is, ‘The doctor didn’t listen to me.’”
Racial disparities in misdiagnosis are sometimes explained by noting that minority patients are less likely to be insuredthan white patients and often lack access to high-quality hospitals. But the picture is more complicated, said Monika Goyal, an emergency physician at Children’s National Hospital in Washington, D.C., who has documented racial bias in children’s health care.
In a 2020 study, Goyal and her colleagues found that Black kids with appendicitis were less likely than their white peersto be correctly diagnosed, even when both groups of patients visited the same hospital.
Although few doctors deliberately discriminate against women or minorities, Goyal said, many are biased without realizing it.
“Racial bias is baked into our culture,” Goyal said. “It’s important for all of us to start recognizing that.”
Demanding schedules, which prevent doctors from spending as much time with patients as they’d like, can contribute to diagnostic errors, said Karen Lutfey Spencer, a professor of health and behavioral sciences at the University of Colorado-Denver. “Doctors are more likely to make biased decisions when they are busy and overworked,” Spencer said. “There are some really smart, well-intentioned providers who are getting chewed up in a system that’s very unforgiving.”
Doctors make better treatment decisions when they’re more confident of a diagnosis, Spencer said.
In an experiment, researchers asked doctors to view videos of actors pretending to be patients with heart disease or depression, make a diagnosis, and recommend follow-up actions. Doctors felt far more certain diagnosing white men than Black patients or younger women.
“If they were less certain, they were less likely to take action, such as ordering tests,” Spencer said. “If they were less certain, they might just wait to prescribe treatment.”
It’s easy to see why doctors are more confident when diagnosing white men, Spencer said. For more than a century, medical textbooks have illustrated diseases with stereotypical images of white men. Only 4.5% of images in general medical textbooks feature patients with dark skin.
That may help explain why patients with darker complexions are less likely to receive a timely diagnosis with conditions that affect the skin, from cancer to Lyme disease, which causes a red or pink rash in the earliest stage of infection. Black patients with Lyme disease are more likely to be diagnosed with more advanced disease, which can cause arthritis and damage the heart. Black people with melanoma are about three times as likely as whites to die within five years.
The covid-19 pandemic helped raise awareness that pulse oximeters — the fingertip devices used to measure a patient’s pulse and oxygen levels — are less accurate for people with dark skin. The devices work by shining light through the skin; their failures have delayed critical care for many Black patients.
Seven years after her misdiagnosis, Watkins is an assistant professor of social work at North Carolina Central University in Durham, where she studies the psychosocial effects experienced by Black mothers who survive severe childbirth complications.
“Sharing my story is part of my healing,” said Watkins, who speaks to medical groups to help doctors improve their care. “It has helped me reclaim power in my life, just to be able to help others.”
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https://www.nytimes.com/2024/01/16/us/diabetes-san-antonio-texas-amputations.html
January 16, 2024
Diabetes Is Fueling an Amputation Crisis for Men in San Antonio
A lethal combination of genetics, access to health care and diets high in processed foods is fueling a diabetes crisis in Latino communities, especially in Texas.
By Edgar Sandoval
At a medical facility on the west side of San Antonio, the patients show up with disturbing regularity — most of them men. They have sores on their feet that won’t go away. And they leave with the same devastating news: Their diabetes has progressed to the point that their leg must be amputated to save their lives.
Diabetes has been on the rise around the world, and Latino communities in the United States have been especially hard hit. A lethal combination of genetics, poor access to health care, diets high in processed foods and sedentary lifestyles has created a crisis in places like San Antonio, a majority Mexican American city in Southern Texas, that is costing a growing number of men their feet and legs — and eventually, for some, their lives.
Texas has one of the highest rates in the nation for people undergoing diabetes-related amputations, at about 52 per 100,000 hospital admissions. The problem in San Antonio is even worse than in the rest of Texas, especially for men, who are roughly three times more likely to lose a foot or leg to diabetes than women — possibly because of cultural stigmas that prevent many Latino men from looking closely after their health….
Medical misdiagnosis is a complex issue with various factors contributing to its occurrence. Disparities in healthcare, including those related to gender and minority status, can indeed affect the accuracy and timeliness of medical diagnoses. There are several reasons why women and minorities may be disproportionately affected:
Stereotypes and Bias: Healthcare providers may hold biases or stereotypes that can impact their judgment. For instance, gender bias can lead to the underestimation of certain symptoms in women, and racial or ethnic bias can affect the interpretation of symptoms in minority individuals.
Communication Barriers: Language and cultural differences can contribute to misunderstandings between healthcare providers and patients. Effective communication is crucial for accurate diagnosis, and barriers may lead to misinterpretations of symptoms or inadequate information exchange.
Underrepresentation in Clinical Trials: Historically, women and minority groups have been underrepresented in clinical trials. This lack of diverse data can lead to a limited understanding of how diseases manifest in different populations, potentially leading to misdiagnosis or delayed diagnosis.
Healthcare Access Disparities: Socioeconomic factors can influence access to healthcare services. Individuals from minority groups or lower-income backgrounds may face challenges in accessing timely and appropriate medical care, impacting the diagnostic process.
White-coat hypertension, a very real thing!
Doctor offices, and dentist offices for other reasons, can induce anxiety with blood pressure spiking.
It takes some preparation for a medical or dental visit, including some meditation or calming exercises.
My 2 cents from the patient side.
The last few times I visited the doctor’s office my blood pressure was high when the nurse first measured it. My doctor now routinely takes my pressure again after a few minutes and it’s always been back to normal. He says that just the activity involved in getting to the office causes some people’s blood pressure to go up.
Doctors just don’t seem to have the same level of diagnostic skills they used to. I had a misdiagnosis last year at a very good eye hospital. I didn’t agree with their diagnosis of Giant Cell Ateritis or proposed treatment (1000mg of IV steroids) and left ‘Against Medical Advice’. After that, my GP and the specialists I saw to further rule out said ailment, all treated me like a criminal. I was even lectured about how I was not a doctor, so how dare I question them? Months later, I finally got to see a Neuro-opthamologist–a rare speciman–who confirmed I was correct. Nothing wrong and probably had either a TIA or migraine! While I can understand the ER doc making that diagnosis, I can’t understand the way my GP treated me. And whatever nonsense she put in my chart about ‘noncompliance’ may ‘poison the well’ with future doctors. Patients simply have to stand their ground. Right or wrong, it’s your life.
Yves observes:”…..So it appears there actually are care deserts for women.”
We were educators who worked in high/medium/low income schools.One of us, whose father was an Elementary School Principal worked in a low income district. What he observed were white teacher who were biased against Black Students. Over the years, we found the same mentality.
Many of the Black mothers would come to school to lodge a complaint about how his/her her children were being treated. Using our father’s as a backdrop to the same thing occurred when we became teachers.
It was our impression that Blacks, low income Anglos, and Hispanics can be very angry because The System always favors those who remain compliant and polite towards those in authority.
It, therefore, stands to reason why Black women going to doctors, would meet with the same amount of prejudice and bias. It seems that’s also the case with Anglo/Hispanic/Pakistani, Indian women, too.
The US never really developed into a Civilization. It went from being a barbaric land, skipped the Civilization Part and has now returned to even further Barbarity.
Roxan – when you were evaluated for GCA were your ESR and CRP blood tests elevated? Were you referred for temporal artery biopsy? Just interested; its a diagnosis that is more frequently missed than over-diagnosed because there is a high level of suspicion if those two blood tests are very elevated which is then confirmed with the biopsy.
As a retired male, if possible, I will choose a female doc. My simplistic view is as female doc she most likely had to work harder than a male to become one and by virtue of being female will likely have more empathy for her patients, too.
Very good point. As a spouse to a retired female family doc, I have also found this to be the case.
IMHO it’s very difficult for men to also get good care from other men. To me it seems to be a matter of motivation. The multitude of male docs I have known have been motivated largely by money. A trick question to ask, which is the exact opposite of that to a competent surgeon:
“How many patients do you see a day?”
Many of the high producers will see a lot more patients and do quick visits.
Surgeons on the other hand logically rate better with more surgeries.
The thing to remember is historically is that diagnostics have always been the most difficult aspect of medicine, but this is dramatically improved with better testing. In the 60s based upon personal recall, not data, only 50% of first diagnoses were correct.
The other aspect of this problem is that physicians are individuually the most stubborn of all professions due to the grueling rites of passage. To survive, at every turn, they have to be right. It’s a self selecting process.
Given all these variables, my best advice is to shop around and talk your local community to see who people like, and who has the longest waiting line. This of course creates the problem of getting in to see them.
I have witnessed women in my life getting substandard medical treatment, again and again. Concerns that over time turn out to be serious, brushed off, over and over.
Our medical system is broken and all the kings horses and men won’t be able to put it back together, because they’re useless
My hope is simply that doctors stop offering women – or at least me – antidepressants when they have no other ideas. Every health-care visit I had for three years (pre-COVID) seemed to involve a suggested prescription for SSRIs. Ocular migraines? SSRI. Digestive issues? SSRI. Vertigo? SSRI. Honestly, after the third recommendation for Wellbutrin I would have respected those practitioners more if they’d told me I had a floating uterus.
Problem was eventually solved but I had to make up a specific set of symptoms in order to convince them to give me the test I was pretty sure I needed, because people like me evidently don’t have that problem.
I prefer women doctors because they have better hearing. I think men are attuned to deeper voices, whereas women are attuned to both children and other women. When you get a man who looks you straight in the eye while you talk to him he usually gets everything right and catches nuance, etc. without a mistake. A lot of the time it’s a question of focus. One of my male docs was always so impatient and annoyed with me that I started making detailed lists when I went to him and after a couple of those appointments he lost his cool and told me my list was too long and that I’d have to make another appointment. Really. I’m probably still that tedious, but I’m lucky to have doctors who listen now.
https://www.nytimes.com/2023/11/11/headway/black-women-health.html
November 11, 2023
Three Days That Changed the Thinking About Black Women’s Health
Forty years ago, Black women convened to discuss how race affected their health. They helped reimagine what medical care could look like.
By Dara Mathis
On June 24, 1983, Byllye Avery welcomed busloads of Black women to the campus of Spelman College in Atlanta. She was in a state of disbelief. The women had traveled from Mississippi, New York, Pennsylvania — even as far away as California — for a three-day event billed as the First National Conference on Black Women’s Health Issues.
She had hoped that 200 women would attend; nearly 2,000 showed up.
The event inspired a remarkable change in attitudes. There were panels and workshops on high blood pressure, diabetes, lupus, childbirth and mental health. But more than addressing specific illnesses, the conference encouraged Black women to share information and consider how oppression affected their interactions with the health system. Crucially, it reframed health as inextricable from racism….
Can I be pardoned for going on a rant here? If not, please feel free to whack this comment. But I just spent 6 hours at a hospital yesterday with my mother for a heart catheterization. Back in April 2021, she went from being able to walk a mile every day to being breathless and nearly collapsing after 10 slow minutes.
She called her PCP who told her she just had allergies and to take some Benadryl. A month later (June 2021), we took her to New England to visit Maine since it was the only remaining state she had not visited. She could barely make it through Logan airport under her own power and was not able to get out and walk around Arcadia National without getting shaky with fatigue. She called her PCP back and asked for more advice about her weakness and breathlessness, and the PCP said “Fine, come in and we will look you over.”
Naturally, after a year of COVID and a couple of months of being unable to exercise at all, Mom had gained about 15 pounds. The doc then told Mom she was just fat and out of shape and to double down on working out. Mom started going to exercise classes 3 days a week, started eating Keto, and lost about 40 pounds, but her weakness/breathlessness never improved, no matter how much cardio and strength training she attempted. The PCP dropped her as a patient 5 months after telling her to lose weight.
It took almost a year (from 2022 to early 2023) for mom to find a new PCP and get an appointment, ask about her fatigue and breathlessness, and ask for exactly the right tests (which she only learned about from the Keto Cult she has joined), which took months to even get scheduled. Last June, she got a bad result on an echocardiogram, so they scheduled a nuclear stress test for the earliest time available – which was December 15. The stress test revealed severe aortic stenosis and she needs her aortic valve replaced or repaired. Yesterday’s cath was just to make sure she had no blockages or anything that would make surgery unsafe (she didn’t – her arteries are clear).
Her original PCP resorted to the classic “You’re just fat” diagnosis, and also implied that she was hysterical since her symptoms began about 3 weeks after completing her first round of COVID vaccinations. We will never know for sure if her vax harmed her heart or it was just a coincidence, but rightly or wrongly, Mom completely mistrusts the medical system now. She stopped taking her statins last summer on advice from the Keto Cult – she did go back on them after her new PCP pleaded with her to do so. She has refused all further covid vaxxes, and is highly resistant to taking any more prescriptions of any kind.
We are lucky that in the nearly THREE years since the onset of her symptoms that Mom hasn’t died of heart failure; she just turned 69 ten days ago and I hope to have lots more years with her. I am way past frustrated and dismayed – just getting medical care today feel like holding a second full time job. And the distrust these misdiagnoses bring about is just further eroding an already wretched system.
My wife asserted that once she passed childbearing age, medical professionals basically gave up on her.
That was the longer version of IM Doc’s take on how doctors treated women in the Deep South.
A few years back a Black woman colleague died after minor surgery to repair a knee injury. A group of women friends had come to pick her up from the hospital and they all noticed that she “wasn’t right.” The hospital staff took a “you people are always complaining” attitude and sent her home. My former colleague dropped dead of a blood clot walking through her front door.
Even on Medicare I pay a small fortune for health care, but I have recently been mis-diagnosed and improperly medicated to the point of debilitation. Fortunately KLG had penned a piece for NC about the medication and I was able to show my MD a recent JAMA article that caused her to re-test and discover the mis-diagnosis. I ceased the medication and recovered fully.
Our so-called “health care” system is nothing but a rent-extraction racket.
Dentistry too and certainly law and financial advisors. Sadly the US medical care model is spreading throughout the world. The root cause of the problem is fee for service and the demands for patient satisfaction. Don’t forget half of the surgeries done in the US are unnecessary according to a number of studies and Germany is not far behind. A lot of that is driven by patient demands. And talking a patient out of rash and probably unnecessary treatment is going to just cost the Dr. time and money for no benefit. Time spent interviewing and studying a problem is not appreciated by patients nor compensated by the system. I have often heard colleagues say that they realize the treatment or surgery they are doing is potentially more risky than beneficial but the excuse is “If I don’t do it someone else will…..” Imagine how insane law would become if legal fees were covered by the government like Medi Cal or Medicare and subject to insurance carriers. Doctors need to be on salary with no bonus for production or patient satisfaction. Their only assignment should be to evaluate and treat to their best ability. Firemen paramedics are a good example of providers that are on salary and do a pretty good job. England had a pretty good model with the NHS which they are now destroying through neoliberal underfunding. We are seeing the same thing in Germany as well. Here we have a saying….”P” on a medical chart means “Pech” or bad luck. P means private insurance and what the doctors mean is that overtreatment is likely with its attendant risks and costs. The Black lady in this article would have done better if the doctor had been on salary and had the time to listen to her and make a diagnosis instead of sitting in front of a computer generating billable events. And allocating huge amounts of money to fee for service health care leads to failing economies and a drop in overall living standards which is not good for public health. Witness the dropping life expectancy in the US despite the trillions poured into health care.
For some guys the secret must be risk avoidance.
From my experience better to go to a University Hospital. Community hospitals are hit and miss.
But end of the day it’s all luck. Either you get competent providers or some clown who shouldn’t even be allowed near cadavers.
The hospital at the University of Alabama’s med school is terrible…except they have a separately endowed eye ER that is first rate. Of the other two, one had a pretty bad ER, the other had a very good ER and a bad hospital behind it.