“Doing Harm”: Maya Dusenbery’s new book

~ Carolyn Thomas

by Carolyn Thomas  ♥  @HeartSisters 

Author Maya Dusenbery interviewed me while I was neck-deep in final copy edits of the book I was writing for Johns Hopkins University Press, A Woman’s Guide to Living with Heart Disease.  She wanted to talk about why I thought female heart patients are more likely to be under-diagnosed than men, and then – worse! – more likely to be under-treated even when appropriately diagnosed. Maya was writing her own book at the time, and it’s finally out this week. Its pithy title sums up the focus pretty succinctly: Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. Here’s a 10-word summary of her book:

My own review of Dusenbery’s book starts with this warning to my heart sisters: “Do NOT start reading ‘Doing Harm’ unless you have first taken your blood pressure meds!”   

I offer this cautionary advice because, although I’ve been writing my Heart Sisters blog posts (here, here and here, for example) about the well-reported cardiology gender gap in women’s heart disease, everything I read in Doing Harm – across the board throughout almost every medical specialty including heart disease – made me want to go have a wee lie-down to recover.

Like me, Dusenbery includes hundreds of credible research citations – like that of Emergency physician Dr. Alyson McGregor at Brown University, and co-author of the medical textbook, Sex and Gender in Acute Care Medicine, who told her:

”   It’s amazing and really alarming to see that cardiac arrest, stroke, sepsis—in almost all of these conditions, women receive less intense care.”

Indeed, when you read Dusenbery’s broad coverage of modern medicine’s view of women’s health issues overall – no matter the diagnosis – it’s likely you will feel even worse than you do now when you read something like this (from the section of Doing Harm called “The Disorders Formerly Known as Hysteria):

“Chronic illness, with its invisible symptoms of fatigue and pain, is largely the burden of women. And it’s worth considering to what extent its relative neglect by the medical system is because it mostly affects women, whose complaints are so often heard not as a roar, but as a whine.

“Are women’s complaints so often dismissed because doctors simply don’t know enough about their bodies, their symptoms, and the diseases that disproportionately affect them?

“Or are women’s complaints so often dismissed because doctors hold an unconscious stereotype that women are unreliable reporters of their symptoms?”‘

Here’s an example of what Dusenbery says about the pervasive effects on women if our distressing symptoms are not taken seriously:.

“(Women) often internalize the experience of being dismissed by doctors.
.
“Even as so-called empowered, highly educated, and privileged patients, there’s still a lot of deference given to medical professionals and physicians. It’s hard to push back when an expert is saying, ‘Nothing is wrong’.”
.
Not surprisingly, Dusenbery’s book includes several pages exploring women’s heart disease specifically. Here, for example, is a disturbing bit of “awareness” history from the American Heart Association (AHA):
.
.
“In 1964, the AHA held its first official conference on women and heart disease.
.
“Advertised ‘for women only’, it was called Hearts and Husbands: The First Women’s Conference on Coronary Heart Disease.
.
“Ten thousand women gathered to get tips on how to keep their husbands from developing heart disease and how to care for them if they did. It would be another 25 years before the AHA held a conference that was actually about heart disease in women.
.
“Heart disease had become so thoroughly imagined as a ‘man’s disease’ in the middle of the twentieth century that, back in 1964, nobody really batted an eye when that first conference geared toward women was all about preventing their husbands from getting it.
.
“In 2016, the association released its first official scientific statement on the topic; over 50 years after that first conference, it declared that, despite some progress over the last two decades, ‘heart disease remains understudied, underdiagnosed, and undertreated in women.’
.
“And according to a 2017 survey, only 22 percent of primary care physicians and 42 percent of cardiologists said they felt well prepared to assess women’s cardiovascular risk.”
.
“You could be forgiven for thinking that heart disease is rare in women.
.
“In fact, cardiovascular disease, which along with coronary artery disease – the cause of most heart attacks – includes conditions like stroke, heart failure, arrhythmias, and heart valve problems, has been the leading cause of death for women for over a century. About one in three deaths among women each year is from heart-related causes, significantly more than from all kinds of cancer combined.”
.
Dusenbery offers a comprehensive section on the difference between the textbook Hollywood Heart Attack experienced – and thus studied – mostly in (white middle-aged) men, compared to women’s experience of non-obstructive heart disease (like the coronary microvascular disease that I live with, diagnosed months after surviving my own ‘widow maker’ heart attack):
.
“In 1996, the National Heart, Lung, and Blood Institute launched the Women’s Ischemia Syndrome Evaluation (WISE) study, a groundbreaking research project to correct the decades-long focus on men’s heart disease. Indeed, while most people who have a heart attack have obstructive coronary artery disease (CAD), a minority of them – more of them women – don’t.”
.
This book explores the ironic reality that, while we may now have more knowledge about sex/gender differences in heart disease than perhaps any other area of medicine, there is also now “a wealth of research documenting the gender disparities that stubbornly persist in diagnosing, preventing, and treating it in women.”
.
As cardiologist Dr. C. Noel Bairey Merz, director of the Barbra Streisand Women’s Heart Center at the Cedars-Sinai Heart Institute, observed:
.

.“The diagnostic and therapeutic strategies which had been developed in men, by men, for men for the last 50 years weren’t working so well for women.“We’ve been working on (female-pattern heart disease) for 15 years, and we’ve been working on male-pattern disease for 50 years.

“So we’re 35 years behind.'”
.
As you read that, you might be wondering how this cardiology gender gap could possibly still be happening in  women?
.
The reality is that when medical conditions like heart disease are diagnosed and treated based on decades of clinical research focused mostly on (white, middle-aged) male subjects (yes, including even the use of male laboratory animals in research), it’s hardly surprising that patients who are not males may still be missing out.
Dusenbery quotes Dr. McGregor on this reality, who says:
.
“When you come to the emergency department with chest pain, all of the protocols that we undergo – what happens to you, what tests we do, whether you get admitted, whether you get further testing, what medications you’re on – they’re all designed based upon a male pattern of heart disease.”
.
Dusenbery also discusses the myth that “younger women don’t get heart disease”, and points to the danger of what Dr. Katarina Hamberg of Sweden’s Umeå University has called a “knowledge-mediated bias.”
.

“While an awareness that men or women have, on average, greater or lesser risks of certain diseases is important and useful up to a point, this awareness can lead to diseases becoming so stereotyped as a ‘man’s disease’ or a ‘woman’s disease’ that doctors are blinded to the individual in front of them – to the extent that the stereotype actually becomes self-fulfilling: knowing a condition is more common in one gender tends to result in its under-diagnosis in the other gender.”

Dusenbery asks – and answers – this question about the reasons for such blindness:

“Is it a lack of knowledge or a lack of trust?

“It seems to be both. The knowledge gap and the trust gap are so tightly interwoven at this point that they could be thought of as two sides of the same coin. Women’s symptoms are not taken seriously because medicine doesn’t know as much about their bodies and health problems. And medicine doesn’t know as much about their bodies and health problems because it doesn’t take their symptoms seriously.”

So what can we do to improve diagnostic tools, treatments and support for women’s healthcare? Dusenbery suggests:

“It is the funders, scientific journal editors, and researchers at all levels of biomedical research who need to help build a consensus within the research community that analyzing study results to detect potential sex/gender differences is just good science.  And integrating the emerging knowledge of those differences into medical school curricula is a challenging task that requires the will of those within medicine. The same goes for reforms to give medical students more education about the implicit biases that can a ect them and to ensure that doctors receive more sorely needed feedback on their diagnostic errors.”

As Maya Dusenbery told a UC Berkeley Greater Good interviewer:

“I want to make clear that it shouldn’t be on individual women to have to become super advocates for themselves and super educated and learn everything in order to get proper medical care. We should be able to rely on the medical system. I hope patient advocacy can help birth changes, but that people within medicine will really take on this problem.

“They’re the ones who we need to fix it.”

♥

.

See also:

My book “A Woman’s Guide to Living with Heart Disease“ reads like the“Best Of”  900+ Heart Sisters blog articles.  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).

Same Heart Attack, Same Misdiagnosis – But One Big Difference

Misdiagnosis: is it What Doctors Think, or HOW They Think?

When Your “Significant EKG Changes” are Missed

Yentl Syndrome: Cardiology’s Gender Gap is Alive and Well

How Does It Really Feel to Have a Heart Attack? Women Survivors Tell Their Stories

Diagnosis – and Misdiagnosis – of Women’s Heart Disease

14 Reasons To Be Glad You’re A Man When You’re Having a Heart Attack

His and Hers Heart Attacks

What is Causing my Chest Pain?

When Your Doctor Mislabels You As an “Anxious Female”

Heart Disease: Not Just A Man’s Disease Anymore

How Doctors Discovered That Women Have Heart Disease, Too

Gender Differences in Heart Attack Treatment Contribute To Women’s Higher Death Rates

How a Woman’s Heart Attack is Different From A Man’s

Published by Carolyn Thomas

67 thoughts on ““Doing Harm”: Maya Dusenbery’s new book”

  1. Drum roll please! The official WINNER of our “Doing Harm” BOOK CONTEST has now been drawn. Congratulations to SUNNY! – and thanks to all of you who entered and shared such heartwarming words along with your entries! ♥

    Like

    Reply

  2. Hi Carolyn,
    Thank you for bringing this book to our attention. As one residing in Breast Cancer Land, I have to say, it’s the men that are often ignored, as far as research. Men basically receive the same treatments as women. Which might be fine, or might not be. Much fault there I attribute to the marketing shenanigans of October…

    But it’s certainly true that women and their symptoms are not taken seriously enough far too often, as you and your readers know all too well. This is outrageous in 2018.

    These words above struck me:

    “I want to make clear that it shouldn’t be on individual women to have to become super advocates for themselves and super educated and learn everything in order to get proper medical care. We should be able to rely on the medical system. I hope patient advocacy can help birth changes, but that people within medicine will really take on this problem.

    “They’re the ones who we need to fix it.”

    Amen to that. I’m all for patient engagement, but the medical system really needs to step up. After all, when a person is sick, she/he isn’t exactly in advocacy mode, at least not initially.

    Thanks for the review. Enter me in your book contest, if I’m not too late. Another book to add to my to-read list. Thank you again.

    Liked by 1 person

    Reply

    1. No, you’re just in time to enter the draw.

      I agree, Nancy, e.g. “…it shouldn’t be on individual women to have to become super advocates…” So much of what I have written over the years has involved, for example, sharing strategies on how to successfully get women past the ER gatekeepers in mid-heart attack, or how to describe your cardiac symptoms so that doctors will take you seriously, or why you should insist on going to cardiac rehab even when your uninformed doctor tells you flat out: “That’s only for old men…”

      It’s exhausting… Men, generally speaking, do NOT have to fight the entire medical system to be believed… (Exception: Good point about men and breast cancer!)

      Liked by 1 person

      Reply

  3. BOOK CONTEST: I’m keen to keep reading more and give a high five to people who want to peel back the cloak of invisibility in all of these matters. Time to show the world until they are uncomfortable rather than complacent: inequitable allocation and use of funds and resources for research must be revealed for what it is and what it achieves.

    This isolates and frames those who are ill, afflicted or often – female – as being in deep deficit. It is convenient for so many people to withdraw from the knowledge of limitations on other peoples lives’…. time to make the reality of what’s been there all along, more acutely visible and expect the world to face up to difference and take steps to assist equitably.

    Liked by 1 person

    Reply

  4. I’d love to win this book but will definitely look for it at the library if I’m not lucky enough to be a winner.

    This is a topic that’s been on my mind for some time and one I bat around with my female friends rather regularly. All of us have been through the medical grinder and come out of it disillusioned and understanding how critical self-advocacy at every step is for women. I wish every woman could read this book!

    PS – Thanks for the warning about taking BP medications before reading the review!

    Like

    Reply

    1. Hi Julia – this is indeed a topic of broad appeal to women. Just this morning, I read a statement by a woman who said that once she started bringing her husband with her to every doctor’s appointment, the doctor’s “condescending and dismissive” attitude evaporated. By comparison, can you even imagine a man asking his wife to accompany him to a doctor’s appointment so that his symptoms will be taken seriously?

      Like

      Reply

  6. BOOK CONTEST:
    Is it lack of knowledge or lack of respect for women that has so many doctors and nurses treat us this way? Everyone should read this book, and all that Carolyn Thomas writes, as a warning of how they may be treated; how to deal with it; how to survive despite it.

    Wondering how many lives Carolyn and Maya Dusenbery may save.

    Liked by 1 person

    Reply

    1. Thanks Barbara – Maya’s book does a pretty persuasive job in suggesting that this gender gap is both pervasive and systemic. We’re hoping that increased knowledge and awareness can fight that…

      Like

      Reply

  7. BOOK CONTEST>
    Wow! Sounds like my story. It’s been a fight to get a diagnosis. I also had a major MI. The widow maker. Finally a diagnosis of coronary microvascular disease. The diagnosis was a small victory, but getting the knowledge and compassion of my cardiologist’s understanding that something is different with me has made my struggle to be heard worth the effort. I hope to help others to be listened to and to be accepted for their conditions.

    Pain is still present but my attitude has improved remarkably. Thank you for all you do,
    Christine

    Liked by 1 person

    Reply

    1. So true, Christine – there’s nothing that can compare to a smart cardiologist’s compassion and understanding! I was also struck by your statement: “Pain is still present, but my attitude has improved”. It’s interesting to me that those of us who have chronic pain often live with pain severity that would likely send other people rushing to the ER for help! Somehow we learn, slowly, to trust ourselves when assessing pain, and that means we don’t have to freak out with every bubble or squeak…

      Like

      Reply

      1. That’s three of us with a widow Maker and Microvascular disease….
        Christine, I once had a cardiologist tell me “I bet you feel yourself ovulate, you’re just too sensitive”. My blood starts to boil if I think about him …

        Liked by 1 person

        Reply

  8. Off topic, and you can address this out of this string, but as with you, we were both diagnosed with Microvascular spasms after our original heart event. How often does that happen? Are many people diagnosed with spasms by itself? I felt fine before, why spasms now?

    Liked by 1 person

    Reply

    1. I have asked this question myself, Jennifer. Most of the studies on non-obstructive coronary artery disease suggest the opposite of what you and I have experienced (we may be outliers in this respect!) – i.e. a non-obstructive heart disease diagnosis is now considered to be associated with a greater risk of having a later cardiac event (previously, it was widely thought to be just a benign condition). I haven’t yet encountered any research supporting the theory that my textbook heart attack (due to a 95% blocked coronary artery) later caused my microvascular dysfunction. Let me know if you find any!

      Like

      Reply

Your opinion matters. What do you think?