Must women bring an advocate along so doctors will believe us?

by Carolyn Thomas    ♥   @HeartSisters

This week, three books and three bold messages about the problem with male-centric medicine:  In her book Sex Matters: How Male-Centric Medicine Endangers Women’s Health, Dr. Alyson McGregor defines male-centric medicine like this: medical research and medical practice based on models historically designed to work in men, while ignoring the unique biological/emotional differences between men and women. In fact, she writes that the male-centric model of medicine is now so pervasive in health care that many of us don’t even realize it exists:

“Women who experience severe pain often have trouble convincing the doctor treating them of how serious that pain is. The more women protest and try to convince the physician, the more their behaviour is perceived as hysterical. This perception can work against them in the Emergency Department.”

If that’s where you are, Dr. McGregor warns: “the best thing you can do as a woman is to bring an advocate with you to explain your symptoms.”         .  

Has it come to this? Do we really need to bring along a more credible companion with us if we want doctors to take our symptoms seriously?  I had some pretty darned serious cardiac symptoms (central chest pain, nausea, profuse sweating and pain down my left arm) while an Emergency physician was busy misdiagnosing me with acid reflux during my widow maker heart attack.  Maybe I should have dragged somebody with me that morning to confirm that what I’d just told the Doc was indeed true.

Women’s misdiagnoses like mine are (among other fascinating facts) what Dr. Sian Harding also wrote about in her new book The Exquisite Machine: The New Science of the Heart, published last week by MIT Press.  In a recent related article in The Guardian, Dr. Harding asks these questions:

Why are women with heart disease more likely to be misdiagnosed than men, and have worse outcomes for surgery? What is behind this gender bias and how can it be fixed?”

A cardiology professor for over 40 years, Dr. Harding states:  “As well as being misdiagnosed, women are less likely to be treated quickly, less likely to get the best surgical treatment and less likely to be discharged with the optimum set of drugs. None of this is excusable, but is it understandable?”

If this reality seems impossible to either understand or excuse, read: “Fewer lights/sirens when a woman heart attack patient is in the ambulance”

Here are the three most commonly heard physician excuses listed by Dr. Harding:

Excuse #1:  Women don’t develop heart disease as much as men, and so seeing a woman with a heart attack is “unexpected”:   Dr. Harding argues that, while it’s true that women themselves may not expect to have a heart attack, and so may overlook the first symptoms, she remains unconvinced by the justifications she often hears from her medical colleagues. About 21% of women die from heart disease – comparable to men at 24%. “For any physician, seeing a woman with heart disease cannot be called unexpected”.

Excuse #2:  Women’s symptoms are strange and unpredictable. Dr. Harding addresses this excuse with another dose of reality:  there is a great deal of overlap between the sexes in the cardiac symptoms they experience – including chest pain: “Feeling sick, sweaty, or lightheaded are also symptoms common to both, as is the classic symptom of crushing chest pain, often radiating up the arms and to the jaw. These heart attack symptoms are the most common symptoms in both men and women. There should be no excuse for remaining ignorant of this range of symptoms.”

Excuse #3:   Established standards and treatment guidelines for all heart patients are already well defined for physicians.  Dr. Harding believes that all doctors should be recognizing heart disease in women and providing the optimum standard of care. However, she warns:  “This is not happening.”  Clinicians, she explains, are less likely to stick to the guidelines when treating women patients, sending them home with painkillers rather than the cardiac medications they prescribe for men. “Women are offered appropriate interventions significantly less promptly than men, and this has contributed to the higher death rate”.  Dr. Harding adds that for every 5-minute delay in appropriate cardiac treatment,  there’s a 5% increase in the risk of death.

She also cites a number of published studies with consistently appalling conclusions if you’re a woman seeking cardiac care. One was a large study on physician gender and treatment outcomes in 1.3 million Florida residents admitted to hospital for heart attack. “Survival rates were two to three times higher for female patients treated by female physicians compared with female patients treated by male physicians.”  And the number of female colleagues a male doctor works with can also make a difference in increased survival rates of female heart patients:

“A higher proportion of female doctors improved both the success of the team in general and the competence of the men on the team for treating women.  The study concluded that the best way to help female patients was to have a gender-balanced team, rather than waiting for individual male doctors to gain experience at the expense of their early failures.”

Perhaps the most thought-provoking question that Dr. Harding asks was this one:

What is it about female heart patients that makes so many male doctors treat them differently?  What behaviours or characteristics trigger this dismissive response in a male physician? 

One factor, she believes, is the attributes of patients traditionally thought of as male or female – and importantly, which might be valued differently if displayed by a man or a woman. For example: “Are you shy, gentle and compassionate  – or assertive, risk-taking and individualistic?” All these add up, she explains, to how male or female we may appear.

When gender and biological sex were compared for how they influenced treatment, it was the perceived gender – the strength of the “female” score compared with the “male” – that made the difference in treatment and outcome. For example, “female” patients (men or women) were four times more likely to need to return to the hospital with recurrent symptoms after being discharged:

“Essentially, behaving in a manner perceived as traditionally female downgrades you in the eyes of a male physician – there is a higher chance that your distress will be seen as overblown, inaccurate or hysterical.”

I’ve written about this concept while trying to make sense of why physicians so often respond dismissively to female heart patients.  I wrote, for example, about Montréal researchers led by Dr. Louise Pilote at McGill University who offered up a similar explanation for what they described as this “significant gender bias against women with heart disease”:

“ Gender-related determinants included feminine traits of personality and responsibility for housework.”

Yes. Housework!   Dr. Piolote’s research participants were surveyed about “feminine personality traits” (like being unassertive) and perceived social standing, as well as who in their household was responsible for housework.  The researchers’ take on the results: these “feminine” personality traits and housework responsibilities (observed in both men and women in Emergency) are “associated with inferior cardiac care.”

Finally, in author Maya Dusenbery’s must-read book, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, she pleads with doctors:

“Believe women when we tell you we’re sick.”

Men rarely have to beg to be believed by their doctors. A Cornell University study for example, found that heart attack symptoms presented in the context of a recent stressful life event were identified by physicians as psychological in origin when presented by women, but cardiac in origin when presented by men.

These three authors are certainly not alone in their frustration. There are plenty of us who are beyond frustrated by now. Being dismissed, misdiagnosed and sent home will do that to you. . .

 

Q: Have you had the experience of doctors communicating to your male companion rather than you?

NOTE FROM CAROLYN:  I wrote more about cardiology’s known gender gap in my book  A Woman’s Guide to Living with Heart Disease.  You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (use their code HTWN to save 30% off the list price).

Image: CDD20, Pixabay

See also:

.

How gender bias threatens women’s health

Skin in the game: taking women’s cardiac misdiagnosis seriously

“My husband’s heart attack was treated differently than mine”

Cardiac gender bias: we need less TALK and more WALK

  How implicit bias in medicine hurts women and minorities

Same heart attack, same misdiagnosis – but one big difference

Fewer lights/sirens when a woman heart patient is in the ambulance

16 thoughts on “Must women bring an advocate along so doctors will believe us?

  1. I’m struck by how overloaded and burned out our health care system is after 2 1/2 years of COVID. This summer I had a period of chest pressure, dizziness and exhaustion with a resting pulse of 48. Couldn’t get in to see my cardiologist until October 8. This was in mid-August.

    Urgent care sent me to the ER, where I was hospitalized for the weekend mainly because the diagnostic test I needed was being done by an overbooked technician. So I had an unnecessary hospitalization – to learn metoprolol was the culprit. Off that drug, I’m doing better. I did get heard, taken seriously, diagnosed and treated. Expensive and stressful way to get care though.

    Thanks for the book recommendations! Glad to receive this post again.

    Liked by 1 person

    1. Wow – that’s an interesting dilemma: an overworked tech can’t complete diagnostic tests fast enough, so patients must be admitted to hospital (always an expensive option!) An expensive and stressful way to spend a weekend!

      I’m very glad that you were heard, taken seriously, ultimately diagnosed and treated, Sara!! ♥

      Like

  2. I’ve never had a male companion come with me to a doctor or ER visit. Because I have a background as an ICU nurse I am USUALLY, but not always, knowledgable and assertive enough that I present as “male-like”.

    However, as one who pretty much demanded a cardiac cath for vague pains between my shoulder blades and got a stent for a 90% occluded circumflex artery. . . I still have a huge feeling that in the future, with a different cardiologist, I may not be heard.

    My mother ended up in the hospital in her 70s in Congestive Heart Failure and afib. The cardiologist said she must have had a silent heart attack because they could see an area of muscle in her heart that no longer was able to contract.

    Did she REALLY have silent heart attack? Or, as a woman with peptic ulcer disease, did she not get the work up she deserved?

    I think about things like “silent heart attacks”. I have diabetes and it blunts certain pain receptors. I also have trouble discerning if low level chest pain is important or not with my lengthy history of HCM.

    Mostly, I try to not think about any of it and hope God taps me on the shoulder and let’s me know if I need to go to the hospital. LOL

    Liked by 1 person

    1. Hello Jill – interesting questions about your mother’s case. Without her medical records, of course, there’s no way to do retroactive second-guessing. And we know that heart attack can be the cause of subsequent heart failure.

      Generally speaking, as Mayo Clinic cardiologists say, chest pain should be considered heart-related – until proven otherwise. Some studies, in fact, suggest that symptoms described as “mild” can indicate significant heart muscle damage – not just those classic severe symptoms. Go figure. . .

      If God is tapping women on the shoulder telling them they need to seek help for heart symptoms, he’d better start doing a better job – given how often women engage in treatment-seeking delay behaviour in mid-heart attack!

      Take care, stay safe. . . ♥

      Like

      1. I did not mean to sound like I was making light of the issue by saying “God tapping me on the shoulder” was a deciding factor in my choice to go to the ER.

        What I really was talking about was the true strength of a woman’s intuition. That even if an MD or PA, male or female, makes a pronouncement about our bodies, we need to trust our intuition
        (Our Higher powers taping us on the shoulder) and believe in ourselves enough to buck the tide of medical opinion when needed.

        Knowledge is power and your articles are so valuable in supporting our intuition with facts.

        My male cardiologist, who has worked with me for 11 years and listened to me every time I have problems or questions is retiring.

        I had a choice to pick a female cardiologist or a male cardiologist who has special expertise in cardiac muscle diseases like Hypertrophic Cardiomyopathy (HCM). I chose the cardiac muscle specialist.

        I’ll let you know how it goes. Luckily with my HMO, I have a choice of about 20 cardiologists if this one is not a match.

        Blessings…

        Liked by 1 person

        1. Intuition is indeed a powerful inner voice – one that women unfortunately tend to minimize or ignore entirely! I like to offer my readers two important statements:

          1. “You know your body! You KNOW when something is just not right.”

          2. “Ask yourself what you would do if it were your daughter or mother or sister having these same symptoms – and then DO THAT!”

          Bucking the tide of medical opinion is a real challenge given the hierarchy of medicine (I agreed 100% with Dr. McGregor’s comment: “The more women protest and try to convince the physician, the more their behaviour is perceived as hysterical.” Patients dread being considered “difficult”. Yet not trusting that little inner voice can often contribute to women’s poorer outcomes compared to our male counterparts.

          Re your new cardiologist: I think I’d make the same choice if I were in your shoes: always choose expertise first! A choice of 20 cardiologists? LUXURY!!! Good luck – and thanks again, Jill. ♥

          Like

  3. For us, it was my daughter (early 20s) during COVID when she was not allowed to bring anyone in with her to advocate for her and had no idea how to do that. The Physician Assistant who saw her (male) and the nurse (male) made her feel intimidated (she said the nurse was “cranky”). She had a swollen leg and had been in a lot of pain and wondered about a blood clot. She even suggested this to the nurse but nothing was done about that, and she was too timid to press the issue. All this while my husband had to sit out in the car on a cold October night!

    The PA never even entered the room all the way! — never even looked at her leg! — and told her she had sciatica and prescribed a painkiller. The next day her boyfriend took her to another hospital where she was diagnosed with blood clots in both her leg and her lungs. I have no idea if his presence with her or being in a different hospital was what made the difference. She ended up staying in that hospital for 4 days.

    I picked her up to take her home and was shocked at how swollen her leg was — she could barely walk. No heart disease, but she was diagnosed with Factor 5 Leiden, a genetic blood clotting disorder, which both my husband and his late dad were diagnosed with. The birth control pills she was taking were what caused the blood clots.

    I was livid, still am – but not as much lol. I began drafting angry letters but had to just let it go — she is an adult after all and she wasn’t going to press the issue. But when my cubs are hurting and my she-bear gets aroused – watch out!

    Good to talk to you again Carolyn, I have been enjoying your posts about roses. So glad you found a new passion. I have too — writing a fantasy novel — and it has a lot of roses in it that are symbolic of my main character’s hopes and dreams — so I’ve been looking at a lot of roses lately too!

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    1. Hi Meghan – what a frightening experience your daughter endured! The pandemic meant countless families were impacted as yours was: one family member inside the hospital, sick and alone, while the rest of the family waited helplessly outside – or in the car, or at home. This was especially common in the early days and months of COVID when the staggering death rates in hospitals and long-term care facilities required severe restrictions on outside visitors.

      I understand a visitor might be stopped at the door, but a Physician Assistant who doesn’t bother to walk into the patient’s room or even LOOK AT her leg? Thank goodness she was ultimately correctly diagnosed and admitted to that second hospital.

      Again, another example of how useful it could have been to document that initial misdiagnosis. Right now there is no requirement for mandatory reporting of diagnostic error – yet imagine what could have been learned from that case to help avoid future misdiagnoses of patients from suffering as she did.

      It seems to make sense to me to have every woman who is about to go on birth control pills tested for genetic blood clotting disorders like Factor 5 Leiden.

      No wonder you are livid – I’m livid just reading your story.

      Thanks so much for your kind words about my balcony rose essays. And good luck with your novel!!

      Take care, and stay safe. ♥

      Like

  4. I was waiting to be seen in an ER, when a man came in and was placed in the bed next to mine (curtain between us). His cardiac symptoms were “exactly” the same as my cardiac symptoms. He was seen, treated, and released before a doctor ever came near me.

    I was absolutely fuming and made my feelings known. Also his wife was with him all teary eyed – I was alone.

    I was eventually diagnosed by a male Cardiologist who literally said, “I’m going to put a holter monitor on you for 2 weeks to prove there is nothing wrong with you”.

    I was diagnosed with Atrial Fibrillation; 4 months later had an ablation.

    I now have a female Cardiologist. When entering an ER, I tell them I have had bad experiences with doctors listening to my symptoms. I find they pay more attention to me.

    Liked by 1 person

    1. Stacey, your description of the teary wife alongside her man is infuriating. You were there first, sounds like – yet he and the teary wife are seen immediately. Perhaps we should add to Dr. McGregor’s advice: “Bring a man who’s openly weeping with you. . . “

      What are we to make of that scenario?

      There IS of course a triage protocol in place in Emergency Departments that generally makes sense – if you’re bleeding profusely, you’ll be seen ahead of the person waiting with a minor wrist sprain. But when two adults with identical symptoms (minus one teary spouse) are treated SO differently, it’s hard to defend that kind of triage decision.

      Dr. Catherine Kreatsoulas, a Harvard researcher who studies something very specific: how women speak to Emergency staff about their cardiac symptoms, has observed a big difference between how men explain why they’re there vs. women explaining (e.g. minimizing the importance of symptoms, apologizing to nurses and MDs, even arguing with the doc when ‘chest pain’ is written on the chart: “Well, it’s not so much PAIN, it’s more like pressure…”) I now advise women (if they don’t happen to have a teary spouse on hand!) to avoid all extraneous words in Emergency and say loudly and assertively: “I think I’m having a HEART ATTACK” in a way that conveys urgency.

      I sure hope you don’t have any more Emergency visits in your future. . .

      Take care, stay safe. . . ♥

      Like

  5. I will never forget the first time I went to a male cardiologist in my medical group after experiencing episodes of crushing chest pain.

    In less than five minutes he diagnosed me with anxiety. I had a well-documented history of depression – so of course, it was anxiety. I knew my body so I sought a second opinion from a leading women’s cardiologist in Manhattan (luckily I live in close proximity).
    She asked a few key questions and made the correct diagnosis – Prinzmetal’s Angina. She prescribed medication and the episodes became much less frequent and now I knew what they were, which helped enormously.

    I don’t have a husband to bring with me to doctor’s appointments or the Emergency Department so I need to learn to advocate for myself.

    Liked by 1 person

    1. Hello Andrea – thanks for sharing your misdiagnosis experience here. Your statement: “In less than five minutes, he diagnosed me with anxiety” – is disturbingly common.

      The Emergency physician who dismissed my textbook heart attack signs took far less than five minutes to confidently announce: “You are in the right demographic for acid reflux!” before telling me to go home and make an appointment with my family doctor for an antacid prescription. During those few minutes, he did not introduce himself, did not make eye contact, did not touch me.

      You are indeed lucky you live in a city where your choice of clinicians is both wide and diverse. And you were also far smarter than I was to swiftly seek a second opinion. You know your body. You KNOW when something is just not right.

      Take care, stay safe. . . ♥

      Like

  6. Carolyn, you are 100% right on target. I finally was able to switch from my male cardiologist to an excellent young woman. Now, instead of being treated like an annoying patient who asks way too many questions, I’m treated like a valued part of a team.

    Misogyny still rules, but with more women in cardiology it’ll have less sway.

    Liked by 1 person

    1. Hi Sandra – isn’t it a tremendous relief to be considered a valued part of your own healthcare team? So glad you found your new cardiologist.

      “Being treated like an annoying patient who asks way too many questions” sounds like you were far too uppity for that cardiologist. Good riddance.

      Take care, stay safe. . . ♥

      Like

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