by Carolyn Thomas ♥ @HeartSisters
In her Netflix comedy special, “Not Normal”, Wanda Sykes recalls having severe post-operative pain following the double mastectomy she underwent after her breast cancer diagnosis. She asked hospital staff for pain medication, but was offered only ibuprofen (or, as Wanda now describes it, “ibu-f***ing-profen!”) Her white male friends, by comparison, told her that they’d each been given far more effective meds for far less severe pain after their own hospital procedures.
Her recommendation to women now is: “Bring a white man to do your complaining for you! ” That’s pretty funny. But we all know that the reality is not funny at all. . .
Many published studies have reported that female suffering like Wanda’s tends to be “minimized, mocked and coaxed into silence.” And if those females are not white, the medical response can be even worse. Studies have identified false beliefs about biological differences (for example, “black people’s skin is thicker than white people’s skin”) and report that these false beliefs continue to shape the way non-whites are perceived and treated; we know that this bias is clearly associated with racial disparities in both symptom assessment and treatment recommendations.(1)
One landmark study published in the Journal of Medicine, Law and Ethics by researchers at the University of Maryland told us something that most women generally already know. The study was called The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain. Researchers found that women were not only less likely to receive aggressive treatment when diagnosed, but were also more likely to have their pain dismissed.(2)
As author Maya Dusenbery explains in Doing Harm, her highly-recommended history of women’s health care:
“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.”
We know, of course, that when a doctor attempts to minimize a person’s pain symptoms, it can hurt patients – because this obvious disconnect usually means an appropriate treatment plan won’t likely happen.
But physicians who dismiss severe symptoms – in both women and men – may be surprised to learn that this disconnect between what patients tell them and what doctors believe can hurt docs as well.
A Florida study on pain, for example, calls this disconnect informational discordance.(3) That’s when physicians tend to underestimate that patients’ symptom are as bad as reported. But they also define something called interactional discordance. This happens when the relationship between doctor and patient is affected because doctors overestimate patients’ actual understanding of diagnosis and treatment explanations, or if they overestimate patients’ level of confidence and trust in their care providers. This kind of discordance was linked to:
- patient dissatisfaction with physician’s listening skills
- patients with unanswered questions
- patient perception that the physician has not spent enough time
And pain isn’t the only condition that exposes this potential doctor-patient discordance.
A 2017 study on patients in Spain living with moderate-severe asthma reported that when physicians underestimated the impact of asthma on their patients’ quality of life, outcomes worsened – including a higher percentage of patients living with poor asthma control and a higher need for hospital and Emergency Department admissions.(4)
Another study, this one about truthful communication between New York physicians/registered nurses and their patients, found that 72 per cent of patients studied said they wanted to be told all truthful details about their diagnosis. This compared to only 40 per cent of their nurses and 42 per cent of physicians who believed that patients want to be told.(5)
When I wrote about a study out of Italy on narrative medicine in heart failure last month, even I was stunned by the results. See also: “A Patient, a Caregiver and a Doctor Walk Into a Bar”
Italian researchers asked the same questions to three separate but related groups:
- people living with heart failure
- spouses/caregivers of people with heart failure
- cardiologists treating people with heart failure
The results revealed an appalling discordance. For example, 80 per cent of the family caregivers used words like “fear” and “anguish” to describe their own response to their family member’s initial diagnosis of heart failure. Even years after first hearing that diagnosis, over 40 per cent of family members still reported feeling a “fear of sudden death of their loved one”.
Contrast that response with this shocker: about 70 per cent of the cardiologists in this study used the word “optimistic” to describe the patient’s initial diagnosis.
How is that even possible? Are these people talking about the same diagnosis? Are these physicians listening at all to their patients? Are the patients and their family members telling their doctors what life is actually like? See also: Is it finally time to change the name ‘heart FAILURE’?
As Dr. Rita Charon, author of the book, Narrative Medicine: Honoring the Stories of Illness, sums up this pervasive problem:
“While doctors are knowledgeable about disease, they do not adequately appreciate that illness changes everything for the patient.”
It seems clear that this issue of disconnect between what patients experience and what their physicians estimate that experience to be is not only alive and well, but it’s the subject of a growing body of clinical research.
It’s also why I urge women to openly SPEAK UP to their healthcare providers. Tell your physician if you’re having distressing symptoms, especially if they worsen. If you don’t clearly describe what you’re experiencing, your physician can’t know. And if physicians don’t know, they lack a full appreciation of your condition. (An example: although research shows that post-stent chest pain happens in over 40 per cent of heart patients, most patients are not warned in advance of this very common and very distressing side effect).
Learn to describe what you’re experiencing in ways that focus specifically on your ability to function. One of my readers told me, for example, that her doctor dismissed her reports of feeling “tired” – until the day he finally responded with a prescription for an anti-anxiety drug, to which she replied: “Will this help me lift my laundry basket? Because right now, I’m not able to do that anymore.”
Don’t do what I did when, despite my textbook heart attack symptoms, I was misdiagnosed and then sent home from the Emergency Department: I caved in to embarrassment because I was made to feel that I’d been making a fuss over nothing, and when my cardiac symptoms continued (which OF COURSE they did!), I felt too embarrassed to go back.
Valid symptoms are not “nothing”.
And most importantly, we need to figure out not only how to get important research findings out of the lab and down to the bedside, but directly into medical school classrooms.