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 cites 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’.”
“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.”.
“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.”
.“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.'”
“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.”
“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.”
A Woman’s Guide to Living with Heart Disease (my blog-turned-book, published by Johns Hopkins University Press, 2017)