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machado: why is it so hard for doctors to acknowledge side effects?
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there's a lot to be said about the value of solid communication when it comes to having a relationship with your healthcare provider that results in good care. getty
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“if they aren’t listening to you, you just have to speak louder,” said the woman in a red t-shirt sitting at one of the back tables. it was the first in-person patient and caregiver conference for a national non-profit organization that supports people living with a rare leukemia. we had just wrapped up a group discussion about how difficult it can be to communicate with a doctor. from sharing information about other health issues, like depression, to talking honestly about the impact of life-changing medication side effects, it seemed that failure to communicate was a problem that needed attention right up there with managing their disease.
the lady in red, who said she had been remission for a few years, confided that she had been dealing with severe diarrhea since starting her medication ten years earlier. the effect on her life wasn’t small potatoes: she was forced to retire early from her job as a teacher, put her dating life on hold and give up her dreams of travelling the world.
“i keep telling my doctor about it,” she said, tapping the table emphatically with her long acrylic-nailed finger, as her voice dropped to a whisper for what came next: “you know, the diarrhea. but he doesn’t seem to be very interested.”
the man sitting beside her leaned in, tugging at the laces hanging from his hoodie as he asked her how much detail she shared about the diarrhea. was she just saying the word diarrhea, he wanted to know, and hoping the doctor would understand the disaster it was making out of her life, or did she take no prisoners, describing every gross detail of what it means to live with frantic and spontaneous liquid bowel movements.
we took her silence to mean the first. certainly, admitting that you have to race to the bathroom every five seconds, and describing what happens once you get there, isn’t exactly a walk in the park. it can be embarrassing, uncomfortable and red-face inducing.
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but that’s just one challenge that comes with talking to healthcare providers about side effects.
the man described an appointment with his doctor during which he came clean about brain fog and fatigue that had been plaguing him for months. he told him about stressful moments at work when his lack of concentration caused him to mess up presentations, and how he didn’t have the energy to train for his fourth marathon, which was making him grumpy and hard to be around. the doctor responded by instructing him to sleep more and focus on it less.
he had brain fog. his doctor told him not to focus on it.
as he told his story, the other people at the table were nodding their heads emphatically. the woman sitting across from him recounted how she had been seeing bright flashes of light in the days following a medication change — thunderbolts, she called them. it took her a month to finally talk to her doctor about it, partly because she was worried that something was really wrong and partly because she thought it would sound so strange that her doctor wouldn’t take her seriously. well, she didn’t, she said.
so then there’s that — you decide that honesty is the best policy, or you just can’t take it anymore, telling all to anyone who will listen, hoping for a solution at the most, and at the very least, some compassion and empathy, and instead, there’s just a huge bunch of nothing.
there’s a lot to be said about the value of open communication when it comes to having a relationship with your healthcare provider that results in good care. bu there also needs to be a comfortable give and take that both meets the patient’s need for compassion, empathy and attention to quality of life, as well as the healthcare provider’s openness to receive the information upon which to make effective treatment decisions.
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it doesn’t help that doctors aren’t always receptive to hearing about how a drug is impacting your life. in fact, in one study, researchers tracked the responses of doctors to their patients who described symptoms that were related to the medications they were taking — common reactions that were well-documented. and yet, almost 50 per cent of patients were told that there was no connection between their medications and their symptoms. even worse, many of the patients reported being told that the symptoms were imagined or “all in their head.”
cognitive dissonance makes it hard for healthcare providers to come clean about side effects
there are a lot of reasons that healthcare providers tend to ignore drug side effects, according to dr. marlene beggelman, a cambridge, mass.- based internist. in an opinion piece for boston news station wbur, she says that while the small amount of time spent with patients definitely impacts what is covered during an appointment — with side effects often falling off the to-talk-about list — there’s also the fact that while doctors get a lot of information about drug benefits, they aren’t often aware of some of the dangers (!!). and then there’s what she calls “cognitive dissonance.”
“cognitive dissonance, a universal human phenomenon, is based on the assumption that people want consistency between their expectations and reality, and twist their thinking into knots to make that happen,” she writes. “in the case of drug reactions, to preserve the notion that our efforts help rather than hurt, our impulse is to attribute the harm to something other than our intervention.”
in other words, if you believe that your job is to heal and not hurt — your purpose, even — it can be difficult to acknowledge that the medicine you prescribe with the goal of making someone feel better is actually making them feel worse. in fact, if you consider this one translation of a quote from the hippocratic oath:
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“i will follow that system of regimen which, according to my ability and judgment, i consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous.”
sounds like a tall order, especially when you consider that just about all medications and therapies come with some aspect of “deleteriousness,” or the capacity to cause some kind of harm.
the “nocebo effect” has a lot to do with how much your doctor tells you about how your medication will affect you
but beyond poor communication skills and the difficulty of moving beyond the realization that what was intended to help and make things better is actually not doing either, there’s also the belief of some healthcare providers that telling patients about possible side effects creates a “nocebo effect.” similar to a placebo effect, in which someone feels better after taking a medicine simply because they believe they will feel better, a nocebo effect happens when a person’s negative expectations are actualized and causes a negative outcome — real or imagined.
basically, telling a patient about possible problems — common or rare — that could be caused by their medication makes it more likely that they will experience them.
hmmm. still not a good enough reason to not share possible side effects or ignore them. after all, regardless of how side effects come about — even whether they are real or imagined — when patients are put in the position of convincing their doctors that something is wrong in the body that they know best, or made to feel it’s all in their head, or when they don’t have the space in which to feel comfortable sharing what’s making their daily life difficult, it’s impossible to get the right care at the right time.
certainly, that the quality of health care we receive can mean the difference between life and death raises the stakes in terms of the importance of clear and open communication, talking through issues and concerns and mostly, listening. but we see the impact of poor communication in business too, education, and our relationships — if we are unable to get our feelings and needs across, and if those we are communicating with are unable or unwilling to receive them, provide feedback, be proactive and lend support, then we get stuck. there may be feelings of anxiety, insecurity, frustration and a lack of trust — the relationship stalls and stops working the way it should.
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and while you might choose to walk away from an employer or a partner who is unable to get on the same page as you, listen — really listen — to your feelings and concerns, whether they believe they are real or imagined, leaving a doctor isn’t always that straightforward. the man at the table thought that maybe the key was in how patients communicated side effects. maybe they should “really tell their story,” he suggested. for the woman in red, this meant describing the impact of early retirement (loss of purpose), not dating (loneliness) and cancelling travel dreams (disappointment). for him, it meant describing potential job loss or career limits, and what the frustration of not training for a marathon was doing to his relationships.
of course, this is all assuming the healthcare provider has it in them to put themselves in your shoes, push away the discomfort of the contradictory do-no-harm/treatment-sometimes-harms reality and focus on doing what it takes to ensure their patients have the best quality of life possible.
but what if you bare your soul, and your concerns are still sloughed off, your feelings minimized or your worries relegated to the realm of the imaginary?
has this happened to you? have you figured out the secret of healthcare provider communication success? send a note to info@healthing.ca, and we’ll share your tips.
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