It is breathtakingly easy to fall into the trap of blaming the patient.
Why does this happen? Part of the reason might be our deeply held societal belief that science and clinical expertise are infallible–so if a patient doesn’t understand guidance offered or doesn’t take medications correctly–it has to be their fault. But a big part of the problem is a historical one.
Bias in the language of medicine
Perhaps the most insidious form of blame is baked into the very language used to describe illness. A classic example is the patient who has symptoms of tuberculosis: until a few years ago, such a patient was called a “TB suspect.” A “suspect:” the word implied – one who might be guilty of (e.g. to blame for) having tuberculosis.
The patient comes in for more throwing shade when medications don’t work. A therapy that is ineffective is not called that; traditionally, physicians have said: “the patient failed therapy” – rather than the other way around. As if it were the patient’s fault that the therapy didn’t work! That is a glaring linguistic form of blame.
Another example: physicians once called patients who didn’t take medications as prescribed “noncompliant.” It is a bit better now–they are called “nonadherent”–but still. The implication is that they have done something wrong–not “adhered”–not that they suffered excessive side effects, or had difficulty remembering, or a change of schedule, or had a hard time keeping track of a complicated medical regimen.
Of course we do
The title of this blog was suggested to me by the experience of a patient I advocate for–I’ll call him “Mark.” I had noticed that Mark didn’t have a follow up appointment scheduled with his doctor and had asked him about it. “The staff at the office told me I needed the doctor’s order for that!” he said. Mark told me that when he explained to his doctor that he was not able to schedule a follow up appointment, the doctor contradicted him. “You think I forgot?” Mark asked. “Of course you did,” the doctor said.
Mark hadn’t forgotten: he had encountered road blocks when trying to schedule a follow up appointment.
I recall thinking to myself–how can this be difficult? Mark just needs to schedule a follow-up! But when I reached out to the clinic, it was a surprisingly challenging process. A month elapsed before a follow-up was finally scheduled. In the case of some patients who need weekly treatments for cancer–that could mean a big setback, if not progression of a cancer.
But this is an issue not just for that one clinic. Booking appointments, for whatever reason, seems to be increasingly challenging. I had such difficulty booking an appointment for another patient that I asked if I should come down to the office. A follow-on problem is the difficulty of getting through: one of my advocate colleagues has literally gone to a doctor’s office to book an appointment due to the difficulty getting through on a phone line or via the patient portal.
How Society Blames the Patient
Society is really good at blaming the patient, too. Although 70-90% of the risk of developing a chronic disease is tied to the environment, environmental causes of disease attract substantially less attention in either the lay press or in medical training.
Instead, the news is full of stories about genetic predisposition to diseases and improving diet. The patient is told–he eats too much or too little or not the right things; he is too fat or smokes too much. And we, the public, believe it–hook line and sinker.
Only recently has there been more discussion about the key role that environment plays in health: how living in areas with high levels of air pollution, like near a power plant, is associated with increased incidence of stroke, heart attack, respiratory disease, miscarriage and premature birth; or how exposure to pollution and organophosphate pesticides are linked to the exponential increase in incidence of Alzheimer’s and Parkinson’s disease respectively.
When blame is implied in the very language of medicine, it is difficult to divorce oneself from these notions. Here are a few thoughts about potential solutions:
1. The first step is of course recognizing the problem, since it is difficult if not impossible to solve a problem until one recognizes that it exists.
2. Families, friends and clinicians should start with the assumption that the PATIENT is correct and question others, particularly any in authority. All of us can be much too quick to dismiss patients’ concerns and to reassure them. It’s a bad habit. Instead–it is prudent never to eliminate any diagnosis, particularly one suggested by the patient, until all the supporting and contradictory evidence for each is carefully considered.
3. Listen–that terribly overused – and so little practiced – word. Listening instead of interrupting right away not only helps preserve the flow of the narrative but also gives us time to think about what is being said–and time to formulate a more considered response.
Change is not going to be easy. Blaming the patient is engrained in the language of medicine and in our culture.
Perhaps it may take all of us becoming patients and experiencing this sort of bias firsthand for the system to change.
Medical disclaimer:
The suggestions given here are not intended as a substitute for the medical advice of your physician. The reader should regularly consult a physician in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention. For additional questions, please call your healthcare provider for reliable, up-to-date information on testing and symptom management of all medical concerns.
All names are changed to protect confidentiality.
Photo credit: National Cancer Institute, from unsplash.com
