Stories of missed diagnoses are everywhere. One woman endures severe pain for a decade before her endometriosis is diagnosed. The source of a woman’s stomach pain is a parasitic worm, but that diagnosis only comes after seven years. Another woman loses her mother to cancer, which her doctors missed until it was too late.
After a December C-HIT column about women getting inferior treatment from health care providers, the stories came pouring in. Frustrated, angry and grieving women told stories of missed treatments and misdiagnoses in a medical landscape riddled with blind spots.
How can this be?
Medical paternalism, said Amy M. Miller, president and CEO of Society for Women’s Health Research, a Washington-based nonprofit that promotes research on the differences between disease in men and women. From research labs to ERs to office visits, clinicians too often respond to patients with a one-size-fits-all (males) treatment.
“When a woman goes to her health care provider, she’s at a disadvantage,” Miller said. “What we know about women’s health is so much less than what we know about men.”
This despite lobbying from groups like Miller’s, government efforts to require inclusion of women in research, and (slow) changes in health care delivery.
In the past decade, according to Dr. Douglas Olson, vice president of clinical affairs at Fair Haven Community Health Care, medical care has shifted to more care-based services, which tends to respond specifically to patients, regardless of gender. In the past five years, there’s also been more inter-professional efforts, where physicians, physician assistants and others with different perspectives are in the same room talking about each patient.
“Medicine is not quick to change,” Olson said. “When it does change, the change is not overnight.”
Women wait longer in the emergency room. If a man and a woman go to the doctor complaining of acute abdominal pain, the man tends to get pain medication, while a woman gets a sedative. If a woman presents with cardiovascular disease, she’s seven times more likely than a man to be misdiagnosed.
In the meantime, while we wait for medical care to catch up, a woman can take steps to be heard, Miller said. Keep a diary of symptoms. Be prepared to ask questions. For example, if a woman seeks medical care for a migraine, the society suggests keeping a headache diary. Take notes at the visit.
If a woman can’t precisely pinpoint where she falls on the 1-to-10 pain chart, she can describe what the pain or medical complaint keeps her from doing, Miller said.
“You can say, ‘I have a headache that was so bad, I couldn’t go to work,’” she said. Also, keep a list of over-the-counter medicine you’re taking, and tell the doctor what other remedies you’ve tried.
Specificity is key. Talking generally about pain requires a medical professional—who already is distracted by massive amounts of paperwork—to ferret out answers, Olson said, and there simply isn’t time. According to one study, a third of patients get 17 to 24 minutes with their doctors. One study says the average patient gets 11 seconds—seconds— before a doctor (with an eye on the next patient) interrupts.
Olson also suggests patients set a doctor-visit agenda with two or three points. Any more might be too much for one visit, he said.
“The truth of medical care is that patients and doctors alike feel there’s not enough time to actually be with one another once that exam room is closed,” Olson said. “The unfortunate realization is that people have to maximize the time they have together.”
Susan Campbell teaches at University of New Haven. She is the author of several books including, most recently, “Frog Hollow: Stories From an American Neighborhood.” She can be reached at firstname.lastname@example.org.