Doctor on Call
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Janet, a 37-year-old female legal assistant and married mother of three who lives in Charlotte writes:
I’ve been suffering from migraine for most of my life. When I was a kid, sitting with my brothers in the backseat for a summertime family drive to the shore was torture. Aside from enduring their horseplay, almost immediately I would become carsick, and this typically was followed by an ever-escalating headache that ruined any chance I had of enjoying myself once we finally arrived at the beach.
Now, thanks to the pandemic, I’ve been working almost entirely from home for most of the past two years, trying to do my job while simultaneously supervising three young children - my oldest is four, very hyperactive and especially demanding of my attention - and that chaotic environment has combined with long hours spent staring at the computer screen to destabilize my migraine. I wake up every day with a headache, and by the time evening rolls around I often am too sick to sit down with my family for dinner and instead just go to bed. On a scale of 1 to 10, the quality of my day-to-day life is subzero.
I asked my physician to assist me in seeking accommodations at work from my employer that would allow me to work part-time, and I even discussed with him the option of using FMLA to stop working entirely for a few months and to my amazed disappointment, he refused to help. He told me flat out that he would not complete any forms or write a specific letter.
Angry with his refusal, I told him precisely what I thought of him and left his office. I’ll not be going back. What’s the problem with this guy?
Steaming in Carolina
The Doctor’s Reply:
Janet,
Thank you for identifying a problem which has vexed healthcare providers (HCPs) and their migraine patients for a long, long time.
By its very definition, migraine at least intermittently reduces one’s ability to perform routine activities of daily living, and in that sense it is a medical disorder which may convey disability. Unlike a fractured bone or an infarcting heart, however, migraine headache is a subjective disorder, and its diagnosis is made not by an x-ray or electrocardiogram but on the basis of history provided by the patient. To measure objectively the degree of disability conveyed by a subjective disorder is no easy task...if not impossible. In addition to the history provided by the patient, many instruments have been devised for the purpose of placing a numeric value on migraine burden and migraine-related disability, but in the end, as with the patient’s history itself, whatever result is obtained relies solely upon information provided by the patient.
What happens when an HCP agrees to support a disability claim made on the basis of headache? First, such support typically will require time and effort expended by the HCP - letters written, forms filled out, telephone conversations with attorneys, etc. - and rarely do providers charge for that time and effort. Second, the information requested from the provider often requires an objective determination: How long can a patient be expected to stand, how often to lift up to 50 pounds repeatedly or how quickly to press a foot pedal during an eight hour workday? How many hours per week or days per month will the patient be incapacitated by headache to the point that he or she cannot perform at the expected level? If the requested accommodations are granted, by how many hours per month will, say, eliminating fluorescent lighting at the office, providing more frequent breaks during the day or permitting the patient to work exclusively from home restore productivity otherwise lost to acute headache?
No provider is blessed with a third eye, with the inherent ability to gauge precisely how much pain a migraine patient is experiencing and how much disability that pain conveys. Nor do we possess a crystal ball with which we can unerringly predict the migrainous elements of an individual’s future. For assessing migraine burden we simply rely upon the words of the patient, and those words we record in the clinical notes of an electronic medical record. As for predicting, we offer treatment, and we hope for the best.
Some providers nevertheless acquiesce to the patient’s request and agree to fill out the form, write the letter, talk to the attorney, etc. For the provider involved, this choice can serve as a path to frustration, as the realization dawns that this financially uncompensated time and effort could have been spent providing clinical care, teaching or performing research intended to raise the existing standard of care (or perhaps spent attending to one’s own family, waiting perhaps not so patiently at home). Others simply say no, a response likely to frustrate the patient and possibly damage the therapeutic alliance. A compromise solution is to advise patients that while your policy is neither to support nor obstruct any type of disability claim made on the basis of headache, you will send copies of your relevant clinic notes to whatever source the patient designates. Sometimes this is well-received, sometimes not.
If you as the patient are denied what you request, it is perfectly reasonable to ask for an explanation. If the explanation seems to you insufficient or, worse, if none is offered, it may be time to move on to another provider. There is an art to practicing medicine, and not all providers are equally adept artists.
The issue you raise, Janet, is part and parcel of a much greater question: how do a patient and provider develop and maintain a healthy and mutually acceptable therapeutic alliance? How much should a patient expect from a provider? How does a provider care for a patient with skill and compassion but avoid personal or professional compromise? There is no simple answer, and as health care evolves the “correct” answer is an ever-moving target.
