When patient ’empowerment’ means doing the heavy lifting

by Carolyn Thomas   ♥   @HeartSisters

You might not expect that a person (like me, for example) who has been a longtime advocate for women with heart disease would take any issue at all with the sub-title of this Patients As Advocates document. But ever since I first saw it, something’s been niggling at me.       .    

 I can say without reservation that since 2008, when I was misdiagnosed in mid-heart attack, I’ve tried to be “part of the solution to the misdiagnosis of heart disease in women” – like this document sub-title instructs heart patients to do.  By the time I was finally appropriately diagnosed and treated, I knew something was very wrong with a healthcare system that sends female heart patients home from the Emergency Department – even with textbook cardiac symptoms like mine – and I also knew that I wanted to do what I could to make it stop.

Some examples over those 13 years for those who don’t already know me and love me:

♥ -my Heart Sisters blog for women living with heart disease has attracted over 19 million views in 190 countries.

♥ -My book A Woman’s Guide to Living with Heart Disease  was published by Johns Hopkins University Press.

♥ -I have spoken to thousands of women in their living rooms, luncheon meetings and community centres at my free Heart-Smart Women public presentations (dubbed by one reviewer as “part cardiology bootcamp and part stand-up comedy”) and to countless physicians at their medical conferences. 

For the past 13 years, I’ve worked tirelessly to be “part of the solution’.  But now, I’m just tired.

Yet the gender gap in cardiology is still alive and well, as reported recently in a compelling commentary published last week in the American Journal of Preventive Cardiology (AJPC), called Addressing the Bias in Cardiovascular Care:  Missed & Delayed Diagnosis of Cardiovascular Disease in Women.(1) 

Three shocking background facts leaped out at me from this AJPC publication (besides the most discouragingly obvious one – that I’m essentially reading the same conclusions in hot-off-the-press publications that I was reading 13 years ago). For example:

“Only 22% of primary care physicians and 42% of cardiologists felt adequately prepared to assess cardiovascular disease risk in women.

“In women with cardiovascular disease, there are continued sex disparities in their diagnosis, treatment and management, resulting in worse outcomes for women compared to their male counterparts. As a result, we continue to see higher mortality rates and re-hospitalizations in women than in men.”

“And despite almost two decades of national efforts to increase women’s awareness of heart disease as their leading cause of death, awareness has actually DECREASED from 65% in 2009 to 44% in 2019 among all women across race/ethnicities.”

Both the AJPC commentary and the Patients As Advocates document are based on reports from the same event, co-hosted in January 2021 by two respected organizations: WomenHeart: The National Coalition of Women with Heart Disease  and the Society to Improve Diagnosis in Medicine (SIDM)

Both groups collaborated on this patient resource document called Patients As Advocates:  Being Part of the Solution to the Misdiagnosis of Heart Disease in Women.  In it, female heart patients are not only urged to boost their own chances of a correct diagnosis by improving how they communicate with clinicians, but also to step up and become a bigger part of the solution to a much bigger problem. 

The document includes three key issues in medicine that are known to contribute to the significantly higher risk of diagnostic error in female heart patients compared to our male counterparts:

1. Symptoms of heart disease and heart attack can be different in women than men. Both women and their doctors may not recognize the risk to their health.

2. Time pressure in the clinic can lead to the omission of relevant information in a patient’s history, an incomplete physical exam, or a breakdown in trust between the patient and clinician.

3. Implicit or explicit bias based on a patient’s age, sex, gender, race, ethnicity or appearance, or beliefs about women’s stress or anxiety, that may discount heart disease as a possible diagnosis.

Here’s what I see when I read this list of factors that contribute to our cardiac misdiagnoses:  except for being able to identify my own symptoms as possibly heart-related, the other factors seem far beyond my own control as a heart patient.

I can’t, for example, do anything about a doctor who “may not recognize cardiac symptoms as a risk to health” (which actually happened to me when that Emergency doc misdiagnosed my central chest pain, nausea, sweating and pain down my left arm, pronouncing confidently: “You’re in the right demographic for acid reflux!”)

I can’t do anything about a doctor’s time pressure in the clinic, or if that doc does an incomplete physical exam on me, or when a doctor behaves in a way that somehow makes me lose trust in that doctor.

I can’t do anything about a doctor’s implicit or explicit bias when assessing a heart patient who happens to be female. Or non-white. Or – heaven forbid! – a non-white female.

Those are pervasive societal and/or systemic issues far beyond my pay grade. 

Yet the Patients As Advocates recommendations include both simplistic suggestions (e.g. keep track of your medications), as well as direct action tips on how heart patients – you and I – could be out there changing the entire healthcare system as we know it.

According to this document, for example, we could also be volunteering to join our local hospital’s Patient Family Advisory Council, where we could “suggest addressing the misdiagnosis of women’s heart disease’. We could be volunteering to become politically involved by contacting our elected officials “to advocate for policies to support women with heart disease”.  We could be volunteering “to look for opportunities to partner in heart-disease related diagnostic research”.

I’m not exactly sure how any of these recommendations will fix “time pressure in the clinic” or “implicit bias” – or any of the factors itemized in the three key issues blamed for disproportionate cardiac diagnostic error rates in women.

Perhaps most niggling to me was was the implication that if you heart patients out there are not “part of the solution”, then you’re clearly part of the problem. Or perhaps it was the apparent pivot away from educating the ones doing the misdiagnosing (while using diagnostic tools that have for decades been designed and researched on white middle-aged men) and toward targeting female heart patients to start improving things, almost as if to say: if the docs won’t do it, maybe you patients will.  In other words, women themselves are now being asked to do the heavy lifting that isn’t being adequately done by the medical profession. 

The Patients As Advocates document also recommends that when you do see the doctor for your cardiac symptoms, you should“push for more information if you feel that your questions are not being answered.”  I always recommend asking clarifying questions when you don’t understand what your doctor is saying, but the word “push” here is troublesome to me, particularly in any setting with language or cultural barriers.(3)  Ironically, the physicians studied actually asked patients only occasionally (29 per cent of the time) if they had any questions during medical encounters, but when they did ask, most patients (79 per cent) responded with a question. So instead of urging patients to “push for information”, it seems like we’d see more predictable results if physicians were the ones being urged to act, starting by asking their patients, “What questions do you have for me?” (rather than “Any questions?” )

Speaking of asking questions, I asked only one question after that Emergency doc misdiagnosed my heart attack as acid reflux: (“But Doctor, what about this pain down my left arm?) Even I knew that arm pain is NOT a symptom of indigestion. But the immediate result of asking that reasonable question was a stern scolding from one of his colleagues: an Emergency nurse who walked up to my bedside and hissed at me:

  “You’ll have to stop asking questions of the doctor. He’s a very good doctor, and he does NOT like to be questioned!”

Utterly humiliated at being spoken to like that, I couldn’t get out of that Emergency Department fast enough. This is what can happen in real life, even when a relatively informed person like me (who even worked at the same hospital) “pushes for more information”.  See also: “When You Fear Being Labelled a ‘Difficult’ Patient”

The buzzword term ’empowered patients’  is rarely far behind well-meaning suggestions that you ought to be doing far more than you’re doing right now.  But patient empowerment is not about the patient taking full control, or shifting the burden of responsibility over to the patient. In Marie Ennis O’Connor’s interesting column on this topic, she reminds us that “not everyone likes to use the term ‘patient empowerment”  because it implies that it’s an authority given to someone to do something.  She cites the words of Dublin patient advocate, Rachel Lynch: “It can be quite tiring being empowered when all you want to be is well.”

Please don’t misunderstand:  I’m happy to see any women (or men) living with heart disease who are well enough and motivated enough to actively pursue “being part of the solution” – in any ways that truly speak to them. But as Marie adds, “Patient empowerment cannot be imposed top down.” 

During my WomenHeart Science & Leadership patient advocacy training at Mayo Clinic in 2008, nobody told me that I had to launch a blog, write a book, or speak at medical conferences in order to solve the problem of cardiac misdiagnosis in women. What I learned at Mayo was that there are so many avenues each of us could take to make a difference in our world – small, medium or large steps, every one just as important as the next. My favourite example of this kind of contribution is the WomenHeart “Heart Scarves” project, which recruits volunteer knitters to create beautiful red scarves, gifts to women recovering from a cardiac event, delivered to them either in hospitals or at cardiac rehab classes. No politics, no committees – just a simple donation of pure caring. And to a new heart patient who “needs a hug”, as one volunteer knitter described, that is a lot.

My former public relations colleagues still tease me that everything I have done over the past 13 years was simply what PR folks do when they have a heart attack: we write and speak and look stuff up – because that’s all we know how to do.

This is likely what the late tennis great Arthur Ashe meant when he wisely advised us:

“Start where you are. Use what you have. Do what you can.”

 

  1. Heather M. Johnson, Celina E. Gorre, Amy Friedrich-Karnik, Martha Gulati, Addressing the Bias in Cardiovascular Care: Missed & Delayed Diagnosis of Cardiovascular Disease in WomenAmerican Journal of Preventive Cardiology, 2021,
  2. Patients As Advocates: Being Part of the Solution to the Misdiagnosis of Heart Disease in Women” – a one-pager for women; WomenHeart: The National Coalition of Women with Heart Disease in collaboration with SIDM.
  3. Menendez ME et al. “Patients With Limited Health Literacy Ask Fewer Questions”. Clin Orthop Relat Res. 2017 May; 475(5):1291-1297. doi: 10.1007/s11999-016-5140-5.

NOTE FROM CAROLYN:  I wrote more about how women are at significantly higher risk than men to be under-diagnosed and (worse) under-treated even when appropriately diagnosed in my book, A Woman’s Guide to Living with Heart Disease” , (Johns Hopkins University Press).  You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher – and use their code HTWN to save 20% off the list price.

.

Q:  Should women be expected to do the ‘heavy lifting’ to help address diagnostic error in cardiology? 

 

23 thoughts on “When patient ’empowerment’ means doing the heavy lifting

    1. You can say that again! As I like to say, there are few things in life more anxiety-producing than being in the middle of a cardiac event. OF COURSE WE FEEL ANXIOUS! And we know that once “anxiety” is prominently listed on your medical record, it can impact all future medical diagnoses, too. But to have other diagnoses dismissed because we appear to be “anxious” is both lazy and dangerous.

      Take care, stay safe. . . .

      Like

  1. All I can say is “Bang On”. After my severe CAD with daily symptoms went undiagnosed for 6 months before a CABG, I told my Cardiologist I would like to see the phrase, “Have you ruled out my heart?” asked by anyone ( esp women) when they have concerning symptoms. He replied, “It’s a shame the patient should have to!!

    Liked by 1 person

    1. Hi Lori – that cardiologist was ‘Bang On’, too. I get that women should be their own best advocates, but honestly – do we have to do EVERYTHING? Daily symptoms undiagnosed for SIX MONTHS?!?

      Your statement to the cardiologist is also what Dr. Jerome Groopman recommends in his book “How Doctors Think”. For example, he recommends we ask the question: “What else could it be?” if it appears the diagnosis is going sideways, explaining: “The cognitive mistakes that account for most misdiagnoses are not recognized by physicians; they largely reside below the level of conscious thinking. When you ask simply: ‘What else could it be?’, you help bring closer to the surface the reality of uncertainty in medicine….”

      Take care, stay safe. . . ♥

      Liked by 1 person

  2. You’ve nailed it again Carolyn! The hubris that permeates the medical world has been bad enough in my experience, but these recommendations really take the cake, however well meaning.

    Sitting in a hospital room after a heart attack, still in shock, is hardly the time I could formulate cogent questions while responses to the questions I could come up with were laconic at best. As I’ve moved past much of my initial despair, I find I’m having little patience for the status quo.

    Thanks for all your work here, it has made a tremendous difference.

    Liked by 1 person

    1. Tomi, you raise such an important point. Many (if not all) heart patients are so overwhelmed – especially in the early days or weeks – that asking questions (never mind PUSHING for information) on what they don’t understand is virtually impossible (given that they likely don’t understand anything that has just happened to them).

      I recall staring intently at my cardiologist’s face back then. I could see his lips moving. I could hear sounds coming out of his mouth. But I suspect he was speaking Swahili to me. . .

      Thank you for your astute comment and for your kind words.

      Take care, and stay safe. . . ♥

      Liked by 1 person

  3. OMG, this sickens me. It takes every ounce of my energy for minimal ADLs (Activities of Daily Living) and to advocate for me.

    Due to loss of oxygen during open heart surgery, I now take my brain DVD for periodic neurology appointments.

    Recent two…
    First one, a male, hadn’t downloaded my report when I arrived, said I had a stroke? I had made that appointment two MONTHS prior!
    Second appointment I made two months prior, too. When I arrived, I did all the same, mandatory tests prior to the female doctor entering the room. Her first words were, “I don’t have the report. I ordered it FOUR days ago”.

    How can they bill out exorbitant fees when they suck?

    So, I am sick and tired of arriving at appointments prepared to be met with such lack of preparation, caring, empathy!

    So, I will soldier on by myself.

    So, ♥️ sisters, self-care, self-care, self-care.

    Liked by 1 person

    1. Hi Roz – self-care, self-care, self-care! An important reminder to all of us. I often say that I spend approximately one hour during the year consulting with my cardiologist, and the rest of the 8,759 hours of the year consulting with myself.

      Yet sometimes we DO need to show up in person for tests or procedures or ? ? ? And that’s when some semblance of readiness is important to both doctor and patient.

      I wonder if that infuriating lack of preparation from your neurologists was due to the specific doctor, or was it whoever in the clinic is in charge of booking the appointment in the first place? As soon as that appointment is booked, records or test results that the physician will need to see during that appointment must be ordered, received and delivered to the desk of said physician. This seems like a clinic management problem – not a doctor problem. Even a doctor who is terribly busy and rushed can quickly scan a report IF the report is there before walking into the exam room to see the patient. What other workplace would tolerate people who show up for an important meeting with zero documents needed for that meeting?

      I suspect that the authors of the “Patients As Advocates” document were NOT thinking of the many heart patients out there who are, like you, managing day to day as best you can – and whose capacity for advocacy focuses by necessity on their own health and wellness.

      Take care, stay safe. . . ♥

      Like

  4. The list of suggested volunteer activities in the Patients as Advocates paper leaves me feeling so discouraged.

    I’m living a life where I am overwhelmed with sorting through insurance snafus, managing a menagerie of prescription drugs and the intricacies of keeping renewals arriving at my house on time, doctor appointments nearly every week, arranging for transportation to said appointments, and even on some days — just getting dressed.

    The chapter of my life when I can be an advocate is closed. I’m a patient. I need my doctors to take care of me. I don’t have it in me to take care of them.

    Liked by 2 people

    1. Thank you Charlotte – you nailed my own gut reaction to this document, too. It’s very common for patients who are overwhelmed with the sheer burden of simply getting through each day to feel far less able than they once were to jump up to volunteer for ANYTHING extra. I recall many times feeling so badly for saying NO to essentially impossible requests from family – the kind of requests that they had always expected a big YES from me before.

      Not every patient can be or should be a patient advocate. It’s too bad you or a person like you couldn’t have been sitting around the table (via Zoom to prevent tiring travel, of course!) to infuse a dose of realism when the document authors were deciding on what kinds of exciting new volunteer opportunities they could convince heart patients to take on.

      Take care of yourself, stay safe… ♥

      Like

  5. Too much to unpack here for me. I totally agree with you, Carolyn.

    When in my daily practice, I inform women that heart disease is the number one killer of women, I get eye rollling and “really?”. My colleagues think I am a zealot, evangelized by personal experience. And who is going to correct disparities but the folks trained in that field?

    Why should we patients be the goads?
    OK, I’m awake now.

    Liked by 1 person

    1. Hello Dr. Anne – you are my favourite kind of physician in that you are both a doctor AND a heart attack survivor, so I know that YOU GET IT.

      It’s so funny that you should use the word “evangelized”. A few years ago, an American electrophysiologist referred to me as “a heart attack survivor-turned-heart health evangelist” – which I took as a real compliment.

      As you are able, keep on evangelizing to your patients (and to your medical colleagues!!) You not only have a medical degree but also the supreme qualification of your own lived experience as a patient that most physicians lack.

      Take care, stay safe. . . ♥

      Like

  6. Interesting that the publication is from “The Society to Improve Medical Diagnosis”. I believe that medical diagnosis is the purview of medical doctors and therefore SELF-reflection rather than OTHER reflection would be the best source on what needs to be improved.

    I believe we have a responsibility to know the symptoms of diseases common to women such as heart disease, diabetes, etc. AND to get our selves to a medical doctor. I believe that we need to ask questions when we don’t understand or do not get enough information.

    That to me is self-advocacy. These are both areas that you champion in your work.

    If I read the article you summarized I would have the same reaction. It seems a bit like victim blaming.
    I might instead be attracted to an article where doctors and cardiologists address us directly saying:
    “We are struggling with the diagnosis of heart disease in women. We need our patients to partner with us in their care to improve the care we deliver. What can we do better? How can we get the word out to women about heart disease? Where are we falling down on our job? Help us be better so that we can help you.”

    Partnering, identifying weaknesses, admitting the truth about the history of male-focused heart care and taking responsibility for changing it.

    Liked by 2 people

    1. Hello Jill – the The Society to Improve Medical Diagnosis is a respected non-profit organization that was established precisely because doctors alone could not/would not explore how the quality of diagnoses could be systemically improved. They’ve also released at least two guides for hospitals and health systems on reducing harm from diagnostic errors.

      Improvement should indeed be the purvue of the ones who are in charge of doing the diagnosing, yet this is the same group who has argued that even the word “misdiagnosis” is the equivalent of doctor-bashing.

      They need all the help they can get, but the charge HAS to at least start with the diagnosticians… Patients cannot be the ones in charge of systemic changes we simply can’t control.

      Take care, stay safe. . . ♥

      Like

  7. Some cardiologists prefer to be heroes. They are useless to women who have difficult forms of heart disease, particularly ischemic problems such as coronary microvascular dysfunction. Mention [M]INOCA to them and they retire behind a miasma of mumbo jumbo, AKA “medicalese”.

    Liked by 1 person

    1. Hello Sandra – I don’t know what’s worse: is it the “medicalese”, or is it – as one of my readers heard from her physician in response to her question “Could my symptoms be due to microvascular disease?” : “I don’t believe in microvascular disease.” There’s a conversation-stopper for you. . .

      I would never describe any cardiologist as “useless” (I know that many ARE working very hard to address the serious issue of diagnostic error in female heart patients) but I am alarmed when I read stats like the one cited in the AJPC commentary: “Only 42% of cardiologists felt adequately prepared to assess cardiovascular disease risk in women.”

      42%?! How is that even possible? This is their business. This is what they do! Who else is going to assess cardiovascular risk in women??!??!! And what is the PLAN to fix a scenario in which half of those making a living in this profession are that under-prepared?

      Take care, stay safe. . . ♥

      Like

      1. The doctor who replied “I don’t believe in microvascular disease” reminds me of a local heart surgeon who informed me that he didn’t believe in “extended myectomies or papillary muscle reimplantation during myectomy”

        What that REALLY meant was he did not care to update his skills in the new cutting edge practices associated with this surgery… that I would get exactly what he learned in his CV surgery residency 30 years ago.

        This type of doctor does not want their patients as partners, they want to call the shots. Don’t read up on your disease or ask questions. . . Don’t you dare threaten my ego!

        High quality, comprehensive, cooperative care is not possible with that attitude.

        Liked by 1 person

        1. Hi Jill – your comment about that cardiac surgeon reminds me of the extreme (puzzling) delay among American interventional cardiologists (the ones who implant stents, among other important tasks) in catching up with the rest of the cardiology world in doing these procedures via the radial access (via the wrist) rather than the femoral access (via the groin) DESPITE study after study over many years showing that radial procedures result in far fewer complications, less bleeding, and much less stress for patients. Radial has been used by European cardiologists since the early 1990s. Yet while every other developed country (Canada, Japan, all of Europe, etc) embraced the radial access, U.S. cardiologists continued to balk at this change. It’s only in the past few years that radial has finally become the default access among American docs.

          What they were really meaning, as you say, is that they were NOT interested in the training required to become qualified for a new technique – despite its many advantages for their patients.

          Take care, stay safe… ♥

          Like

          1. Absolutely, I had three groin access cardiac caths since 2011. The fourth one in 2019 was a scheduled procedure rather than “whoever is on call for the ER” and my cardiologist specifically chose an interventional cardiologist who did radial access procedures. His comment being “You’ve been through enough!”

            OMG what a breeze! What a blessing! I am now spoiled and will insist on it in the future, if at all possible.

            Liked by 1 person

            1. I know!! I’ve had a couple trips to the cath lab (both times via radial because I live in Canada) and honestly, I felt like I could have leaped off the table and tapdanced down the hall to the CCU afterwards. Other than not being able to lift heavy weights with that arm for a few days, my recovery was indeed a breeze, too. What a remarkable breakthrough in catheterization progress!

              Like

Your opinion matters. What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s