A 24-year-old man makes a visit to his primary care doctor because of a severe headache that has been bothering him for 24-hours. The doctor takes a history and learns that the man has otherwise been in good health, exercises regularly, does not smoke or use drugs, and has no significant family history relevant to headaches. A physical examination is also normal including a normal blood pressure. The doctor tells the patient that it is unlikely that there is anything seriously wrong with him, inquires whether he has been under an unusual amount of stress lately, and advises him to take an over-the-counter pain medication (acetaminophen) and to call if the headache does not subside over the next 24 hours.
This is a typical scenario for a primary care visit and the overwhelming odds are that this young man indeed has nothing seriously wrong with him, is suffering from a tension headache because of stress, and will feel much better after a few doses of the painkiller and a few hours. Yet in many cases patients do not feel satisfied with an encounter like this. In this instance, our patient feels that his doctor did not appreciate the severity of his symptoms or consider all the possible underlying causes for them. So he goes home and searches the internet for causes of headaches. He reads that a type of brain tumor called glioblastoma multiforme (GBM) is the most common form of brain cancer, that it is virtually incurable, and that severe headache is one of the early symptoms. Our patient wants a magnetic resonance imaging (MRI) scan of his head without delay. He leaves a message with the doctor’s office making that request and becomes very frustrated when a day later he has not heard back. Fortunately, at that point his headache is better, so he now resolves to find a neurologist who will order the MRI scan he thinks he needs.
Article Identifies Medical Gaslighting
A recent article in the New York Times by Christine Caron highlights instances in which people do not feel their doctors are listening to them. “The experience of having one’s concerns dismissed by a medical provider, often referred to as medical gaslighting, can happen to anyone,” Caron wrote in the article published last July. Caron writes about people whose symptoms were dismissed by medical professionals, only to turn out to have serious illnesses. “A recent New York Times article on the topic,” she explains, “received more than 2,800 comments: Some recounted misdiagnoses that nearly cost them their lives or that delayed treatment, leading to unnecessary suffering. Patients with long Covid wrote about how they felt ignored by the doctors they turned to for help.” She also notes that the problem of “medical gaslighting” appears to be worse for “women, people of color, geriatric patients and L.G.B.T.Q. people.”
To read the article by Caron, one might get the impression that there is a widespread breakdown of communication between patients and their doctors, and that dismissal of symptoms is a common phenomenon. Furthermore, the article implies that doctors routinely miss real disease because they don’t take what patients tell them seriously.
Caron cites a study “using data from 2006 and 2007 [that] estimated that approximately 12 million adults were misdiagnosed in the United States every year and about half of those errors could be harmful.” When we looked at that study, however, we also noted that the rate of those errors, which involved colon and lung cancer cases that were not initially diagnosed, was 5.08%. In other words, no misdiagnosis was detected in almost 95% of the cases the investigators examined. While finding misdiagnoses in 1 out of 20 patients is very far from trivial, it does put in perspective the sense from the article that misdiagnoses are common. We believe that a more common problem is the breakdown of communication between patients and their healthcare providers. Let’s look first at what was probably on the mind of the doctor who saw the patient in our fictional example.
Using Pretest Probability to Make Medical Decisions
When a physician or other healthcare provider is faced with a set of symptoms reported by a patient, one of the very important things they consider is the “pretest probability” of different potential diagnoses. In the case of our young man with a headache, for example, we know that the rate of GBM is 3.19 per 100,000 people and that the median age of diagnosis is 64. Thus, the chances that a 24-year-old man with a normal neurological examination has a GBM are vanishingly small. Much more likely are other types of headaches, like tension and migraine headaches. MRI scans are expensive and unhelpful in detecting the causes of most headaches and health insurers balk at paying for unnecessary medical procedures. Finally, waiting a few days to see if the headache goes away would have minimal consequences if our patient really did have a brain tumor. In this case, the doctor’s advice on a plan of action was entirely reasonable.
Yet it did not seem so to our patient. Indeed, a survey published last year found that “Three in 4 Americans leave the doctor confused and dissatisfied for reasons that include disappointment in the level of Q & A they have with their doctor, confusion about their health, and a need to do more research…” Nearly half of people research their doctors’ suggestions after a visit. A breakdown in communication between healthcare providers and patients seems to be at the root of this issue.
And a key cause of this breakdown is probably the fact that primary care providers, and many other healthcare professionals, find themselves overloaded by the demands made on them, particularly by the need to record every aspect of a patient encounter in the electronic health record (EHR). A study published last July in the Journal of General Internal Medicine showed that primary care doctors would need 26.7 hours a day to complete all the work that is asked of them. This problem spills over into many aspects of healthcare: in a recent visit to an emergency department at a major urban teaching hospital, a member of the Critica team witnessed scores of doctors and nurses huddled in front of computer screens trying to complete EHR requirements while patients waited for hours to be seen. While anecdotal evidence like this must be taken lightly, it is consistent with many reports we have heard and with the Journal of General Internal Medicine study showing that doctors simply don’t have enough time to spend providing direct care to patients. It is hardly surprising, then, that some people feel their doctors aren’t listening to them or sufficiently addressing their questions and concerns. Many are turning to the internet for information, where they may or may not obtain accurate information.
Solutions for Medical Gaslighting
In her New York Times article Caron lists six signs of medical gaslighting, most of which center on poor communication style, including “You feel that your provider is being rude, condescending or belittling.” One of the six is “Your provider will not order key imaging or lab work to rule out or confirm a diagnosis,” but as we have pointed out, that one is not always a sign of gaslighting but is more likely to be a question of a physician applying pretest probability logic to make a decision that expensive or invasive tests are unlikely to contribute information that would influence a course of treatment.
Caron also offers suggestions for how patients can advocate for themselves and steps to take if a person still feels ignored, including switching providers and joining a support group. The latter is also more complicated that she suggests, however, because support groups may or may not be sources of accurate medical information. Some can help patients through difficult situations and offer valuable advice, but others create an adversarial relationship between doctors and patients and promote interventions that are not evidence-based.
Solutions to the medical gaslighting problem should not rest solely on patients’ shoulders of course. While Caron’s suggestions are mainly good ones, they do not go far enough. Two things need to happen on the healthcare providers’ side of the issue. First, it is now abundantly clear that the age of the EHR and other changes in medicine have put ridiculous demands on healthcare providers that force them away from their most important task, interacting directly with patients. This needs urgent attention and reform. While the EHR offers a multitude of advantages over old-fashioned handwritten charting, it now places an impossible workload on doctors and nurses and needs to be fixed. Second, much more attention needs to be paid to training doctors and other healthcare workers how to communicate with patients. While this may seem obvious, it is not necessarily a routine part of medical training. Caron paints a bleak picture of doctors who don’t answer questions, condescend to patients, and ascribe symptoms to mental health issues without offering any actual mental health help. Relieving some of the administrative burden on doctors should make it easier for them to spend more quality time with patients but teaching doctors how to communicate effectively is also needed.
It is unclear how common medical gaslighting is and it is critically important that we not encourage unnecessary medical testing and procedures. Still, Caron does an important service in identifying a growing rift between doctors and their patients. We believe that a large portion of the cause of that rift rests in unreasonable demands on doctors’ time and lack of training in how to communicate with patients. Both are remediable issues that require our attention.
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