Discordance: when patients and docs aren’t on the same page

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. 

14 thoughts on “Discordance: when patients and docs aren’t on the same page

  1. I have a weird story where my Cardiologist came to my rescue because he suspected I was under-reporting symptoms.

    It was in 2013, about 6 months after my first Ventricular Myectomy surgery for Hypertrophic Cardiomyopathy. I had a check up with the Cardiologist and basically told him I was doing fine, I recovered from surgery, my chest pain was a bit better… and in my mind… there was nothing more to do for my situation. Anyway, surgery was the last resort & I was back to where I started.

    And my echocardiogram came back with very high pressures similar to before surgery.

    My cardiologist asked his Nurse Practitioner to call me because he thought I probably was not doing as well as I had led him to believe. The NP called me and I burst into tears, I could barely take a shower without shortness of breath,I was tired all the time, and was getting chest pain and arrhythmias when I walked up the stairs. The same as before surgery.

    She asked if I wanted to go to Mayo Cinic for a second opinion and I said Yes… My Cardiologist agreed and I ended up getting the surgery redone correctly at Mayo with very good results.

    I’m a nurse, I should know better, but when the nurse is the patient, sometimes good sense goes out the window!!!

    Liked by 1 person

    1. Hi Jill – your cardiologist was ON THE BALL! Love to hear about healthcare professionals like that: he sees something that doesn’t smell right on your echo, recalls your 6-month post-op conversation, and decides the two incidents don’t match at all. So he gets in touch with his patient. That’s so awesome, and is how life should be in an ideal world.

      I’ve heard many other nurses say that nurses make the worst patients.

      Please take care and stay safe out there. . . ♥

      Like

  2. And it’s not just doctors and nurses. In the past month, I had to be taken to the ER twice (I ended up with a pacemaker for my efforts).

    Despite explaining my long list of cardiac issues (atrial fibrillation, heart failure, valve replacement, significant Coronary Artery Disease), the paramedics asked me if I was SURE I wasn’t having “a panic attack.”

    I’ll bet you anything that they never ask a 69 year old MAN with those issues whether he might not just be having a panic attack.

    After my adventure (which included a visit with the stereotypical male obnoxious cardiologist), I saw my primary, who was a little shamefaced. She said, “I was just thinking that your tiredness was a function of depression.” She wasn’t the first doctor who’d said that. I told my son that when I died, I wanted him to engrave on my urn, “I TOLD you I was sick!”

    Liked by 1 person

    1. Oh, Wendy. I just hate hearing stories that include sentences like “the paramedics asked me if I was SURE I wasn’t having “a panic attack. . .” I think I can answer your question: NO they likely do NOT ask their male heart patients (especially those with an impressive cardiac track record like yours) “Are you SURE?”

      I hope you are settling in with your pacemaker by now and feeling much better.

      I’ve seen photos of gravestones with that inscription. I hope we never have to arrange that one for ourselves..

      Take care and stay safe. . . ♥

      Like

  3. Carolyn, it’s striking that there are so many aspects to this issue–dysfunctional communication, physician biases, patient fears, to name a few.

    And the misleading use of terminology, which I know you’ve addressed a lot, is such a big one. If we’re not even meaning the same things with our words when we have conversations with our doctors, then we are just talking past each other. I keep wondering what it is going to take to get actual effective responses to this huge health care problem.

    Liked by 1 person

    1. Lisa, you are so right – this is a pervasive issue that has many underlying factors.

      You pointed this out for us in your recent post about oncologists who significantly underestimate their patient’s level of moderate-severe pain and other distressing side effects due to radiation treatment for breast cancer, (READERS: here’s Lisa’s excellent overview of the shocking results of this study presented at a Breast Cancer conference recently)

      Since I first started reporting research findings on misdiagnosis of women’s heart disease in 2009, I’ve also observed emerging studies that seem to place the blame for this cardiology gender gap on the patient (e.g. we’re not using the “correct” words that docs look for when we describe our heart attack symptoms to Emergency staff. The implication is that if we fail to use the word “pain” out loud to describe chest symptoms – instead of pressure, tightness, fullness, heaviness, ache, burning or other words that men rarely use (so must not be valid chest symptoms), then docs will be too confused to guess that it’s probably a cardiac symptom.

      See also: “Words Matter When Describing Cardiac Symptoms

      Even I find myself advising women to try to describe symptoms in a way that doctors are better able to accept. For example, don’t just tell a doctor that you’re “tired”. What woman isn’t tired? We’re all tired. Docs have already moved on out of the room by the time we tell them we’re tired. Instead, clearly use functional quality of life comparisons: “I’m so tired that I can no longer do ____” or “I’m in such pain that I can no longer do______” Maybe that will be less confusing. . . ?

      But at the same time, men are not being told to rehearse how they will describe their distressing symptoms before they see their doctors. . .

      Take care and stay safe. . . ♥

      Liked by 1 person

  4. Like you, Carolyn … when I went to the ER with chest pain, heart pain (“it feels like my heart isn’t beating right”), jaw pain and shortness of breath, I was sent home with salad recipes and told to lose weight. The chest pain? “Menopause can cause heart flutters.” I had elevated tropinin and three abnormalities on my EKG, but because I lacked a penis, I was discharged in 90 minutes.

    When I went for a second opinion after the ER walking heart attack, I was told I was likely a “fainting goat” person, prone to fainting for no reason. And when I pressed the cardiologist on my “fainting goat” episodes … that I hadn’t ever lost consciousness, he switched gears and told me my chest pain was all in my head.

    And when he then found that my LAD was *inside* my heart, he insisted on writing in my medical chart that I had experienced “non-cardiac” chest pain.

    (Six months later, that same doctor amended the medical record to say “in hindsight, chest pain caused by blocked LAD.”)

    When I had open heart surgery at Stanford six months after the first heart attack, the doctor found that my LAD has ‘jailed’ 7 arteries (meaning that they had never received blood flow, ever), the entire front of my heart had zero blood flow, my septal wall was buckling in on itself and they also found a PFO (patent foramen ovale) as well.

    Don’t write off women’s complaints. Apologize when you get it wrong. And learn from it when you get it wrong.

    Liked by 1 person

    1. OH, FOR PETE’S SAKE!!! Tracey, I’m utterly gobsmacked by the list of misdiagnoses you had to endure. Including “fainting goat” syndrome/all in your head/menopause, etc. etc. It’s almost too much! And all because you didn’t have the good fortune to grow a penis. . . As cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once said, “Women are still sent home from the ER with elevated troponins.” (cardiac enzymes that, if present in the blood, almost always are markers for heart attack) “This does NOT happen to men…”

      The concept of “jailed” arteries is something that’s typically written about only in cardiology journals, not on patient blogs. What it means, for other readers (in patient-friendly English) is generally a blocked coronary artery’s side branch blockage that’s covered (or “jailed’) by a stent in a nearby artery, sometimes called a “bifurcation lesion”). I think I’m going to add these terms to my 8,000 word glossary here in case other patients hear them casually mentioned by their cardiologists.

      Very sound advice at the end of your comment. I wish all docs would adopt that advice.

      Take care, and stay safe. . . ♥

      Like

    2. Tracey, this post and your comment could not be more timely. I had heart surgery at Stanford in early December to fix an arrhythmia and have been through an incredibly frustrating experience of having my concerns be dismissed once I left the hospital and the excellent care of the nurses there.

      I am not afraid at all to speak up on my behalf. I finally got relief from horrible symptoms (severe coughing fits leading to vomiting and aggravating my heart) when I reached out to other doctors I’ve consulted with outside the surgeon’s practice. My PCP prescribed cough medicine that was a game changer. And another cardiologist’s PA has been a godsend in terms of being proactive, attentive, meticulous, a good listener, and taking every concern seriously.

      I spent days suffering unnecessarily due to the nurse’s refusal to take my concerns seriously. Some of my suffering was self-inflicted out of ignorance because I was not advised to not take certain medications at the same time. All of this has been quite frustrating in particular because I’m not afraid to advocate for myself and I have always told the nurse succinctly what I need, only to have it typically be dismissed.

      I did file a complaint with the Patient Relations department; I encourage others to do this.

      Like

  5. Thanks for writing this, I really enjoyed reading it.

    Our daily hospital routine is purely automated nowadays, with policy-related steps rather than clinical research findings. And what we were taught in school is totally different from the current practice that we do daily.

    Patients are evolving same as the diseases that comes with them, unfortunately the system is just focused on two points: eliminating mistakes from occurring, and increasing the end profit.

    Like

    1. Hello Obaid and thanks for taking the time to comment. I’ve been observing the lightning speed at which clinical care in ICUs has evolved since a year ago when COVID-19 first hit us. For example, procedures like proning (laying patients face down instead of on their backs) – which had previously been used on mechanically ventilated patients, is now seen in ICUs with COVID-19 patients – even those who are awake, spontaneously breathing and NOT intubated. This is a practice change that’s not due to clinical trial evidence, but to learning anecdotally what other ICU doctors in other hospitals in other countries had already learned about what seemed to be working – and what wasn’t working.

      Doctors and nurses seemed to need to learn on the fly to help them manage a frightening diagnosis nobody knew anything about at the time. Hopefully, the ability to nimbly learn from what has worked elsewhere will replace (or at least augment) the two points you believe are driving the healthcare system.

      Take care, stay safe. . . .

      Liked by 1 person

  6. I totally agree Carolyn. Add another twist to this scenario. A mental illness and/or a psych med on the list.

    Physicians are so quick to attribute anything I might say to the ultra-hysterical female, validated because she takes psychotropic medication, as if there can’t possibly something malfunctioning below her neck. An article in The New York Times a number of years ago had a name for this as well. The author called it Diagnostic Overshadowing.

    Liked by 1 person

    1. Such an important point, Andrea! I’ve written about this problem before. So much of medicine is trying to figure out what the problem is NOT (ruling out one possibility after another until the most likely culprit is correctly identified). But the reality is, sadly, that you can basically kiss the correct diagnosis goodbye if your medical chart already contains words like “anxiety” or “depression” or “mental illness”. And worse, those prominent labels will almost always end up front and centre on your record, following you around from doctor to doctor, no matter what genuinely distressing physical symptoms bring you to seek medical care.

      Thanks so much for sharing that NYT article on diagnostic overshadowing with us, and for raising an important issue that needs to be raised in medicine. The stats are grim: as the Times article reports, “the World Health Organization calls the stigma and discrimination endured by people with mental health conditions ‘a hidden human rights emergency’.” I’ve written about this (here and here, for example) and will continue to bang the drum.

      Take care, and stay safe… ♥

      Like

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