We all know about the bad patient. They’re the one who Googles their symptoms, doesn’t believe their doctors, and demands tests that are completely unnecessary. They come to their appointments with a list of wide-ranging complaints, and exaggerate their symptoms. They don’t take their medications properly and half the time can’t even remember what they’re taking. They refuse to take responsibility when they sabotage their own progress. They argue with their doctors and blame them when things go wrong.
We all know about this patient somehow, although no one ever comes right out and tells us about them. Instead, we discover them through news reports about how superbugs are on the rise because of the bad patients who demand antibiotics for viral infections, and about the strain placed on healthcare systems by people who go to the doctor for no good reason. We see them in hospital dramas, where they lie about their symptoms and medical histories, refuse to do what doctors tell them, and demand unnecessary and costly procedures. Those of us who spend a large amount of time in and around the clinic hear doctors and nurses joke about the bad patients who place their trust in ‘Dr. Google’, who can’t even remember the names of the drugs they’re taking, and who are obviously exaggerating their symptoms for their doctors’ benefit. (“You should have heard that woman when I asked her to cough, trying to make it sound like a wheeze. It was so ridiculous, I almost laughed.”)
(Image courtesy of the Facebook group The Emergency Room Doctor, which provides “a little lighthearted relief from the stresses of the ER”, mostly by making fun of patients.)
We’ve also learned that there’s only a fine line that separates us from the bad patient. Who among us hasn’t checked out our headache on Google and worried it might be a tumour or an aneurysm? Those of us with insurance or public healthcare have probably gone to the doctor at least once with what turned out to be nothing more than the common cold. Those of us with chronic illnesses have probably wondered, or even asked about that expensive test, that our doctor is sure isn’t necessary.
We’ve learned that when we become patients we need to keep our complaints simple and straightforward, to be completely truthful when reporting our symptoms and medical history, to avoid offering our own opinions and theories, and to refrain from questioning their judgment. We’ve learned that being a good patient is essential to getting good outcomes from the clinic.
My New Year’s resolution is to become a bad patient.
After years of struggling with chronic illness that has gone undiagnosed, misdiagnosed, untreated and mistreated, I have come to the conclusion that the good patient is simply a target for neglect.
When a good patient wordlessly accepts their doctor’s assessment that they aren’t suffering too badly from their illness, they go undiagnosed. When they leave out their minor and non-specific symptoms, the complexity and pervasiveness of their illness goes unrecognised. When they report their clinical history without regard to the in-built confirmation biases of clinical questionnaires, they become a target for misdiagnosis. When they comply unquestioningly with their doctor’s diagnostic and treatment decisions, they are cut off from tests and interventions that are poorly known or expensive. Ultimately, they become a passive victim of a system that professes to value patient autonomy above all else even as it regards them as little more than a social and fiscal burden.
So I have decided that if my health is going to be held hostage to economics, I at least refuse to cooperate. This may not lead to better clinical outcomes, and may even lead to worse ones, but I refuse to surrender my agency any longer.
To that end, this is my Bad Patient Manifesto:
- I will take an active role in seeking explanations for my symptoms. (And yes, this means lots of Google searches.)
- I will not hesitate to offer my findings and opinions to my doctors.
- I will not downplay the severity of my symptoms at the clinic, in public or in private.
- I will not edit the symptoms I describe, even when they are numerous, diverse and nonspecific.
- I will not accept it when people (including doctors) tell me how I am feeling.
- I will ask about tests and treatments that I think are important.
- When doctors disagree with my account of my illness or my opinions about its management, I will ask them why.
- If I am uncertain about any aspect of my treatment or diagnosis, I will ask my doctors why.
- I will choose what aspects of my medical history to share on clinical questionnaires when I know that full disclosure will interfere with an accurate diagnosis.
- I will be open about my illness experiences with everyone in my life.
- I will choose to not take my prescription medication if I don’t like the way it makes me feel without letting any medical professionals know one way or the other. [h/t yourmotherisaclassylady]
- Crap Time Lord