Be An Informed Patient…But Not TOO Informed

Posters at the doctor’s office remind me that I am supposed to be an informed patient; I should read brochures, take classes, talk to my doctor. I should educate myself and advocate for myself when I’m meeting with doctors, nurses, and other health care providers. Informed patients have better medical outcomes, find it easier to adhere to treatment.

Taking an active role in your health care is supposed to be empowering. To that end, public outreach campaigns not just from medical offices but public health agencies encourage people to take charge of their health. The Internet has furnished ample resources for patient education (and miseducation). It’s easier than it was 20 years ago to take a diagnosis and read up about it, to learn about different treatment options and patient outcomes. Information about health care is much more accessible.

But the claim that patients should be informed and should be proactive in the doctor’s office is often belied by the behaviour of health care providers in clinical settings, where informed, assertive, confident patients are sometimes penalised for doing what they’ve been told to do. There are undoubtedly many reasons for this; doctors are increasingly forced to take short appointments that do not provide enough time to actually communicate with patients, some believe their patients are not as educated as they think they are, and there’s a prevailing attitude in the medical profession as a whole that patients do not know their bodies as well as their doctors do.

For patients dealing with the occasional one-off illness, this is certainly a problem. It’s irritating to go to the doctor with a specific set of symptoms that are ignored because those couldn’t possibly be happening, or to want to discuss side effects and be brushed off. People with disabilities, however, often deal with doctors on a regular basis, which means that, for one thing, they are often very well informed, and for another, they really need to be able to self-advocate, and being constantly patronised by doctors is a very serious issue.

The scope of medical practice is vast and not every doctor knows all things. There’s a reason you go to a cardiologist to deal with heart problems, a pulmonologist to look at your lungs. You don’t go for an oncologist to discuss your thinning hair, and you don’t visit a podiatrist if you need rotator cuff surgery. Medical specialties exist for a reason, but when you’re disabled, you may see an assortment of care providers, not all of whom are familiar with your conditions and comorbidities, especially if you have rare disabilities. It’s not always possible to see a specialist or a doctor familiar with a particular condition, either, because of issues like expense, insurance coverage, or isolation—in my rural area, there are very few medical specialists, because we don’t have a large enough population to support them.

Which means that people with disabilities often have to advocate for themselves in medical settings. They know what their bodies are doing, they know which treatments have and have not worked in the past, they know why they are going to the doctor and what kind of outcome they expect from the appointment. Yet, there’s a lot of shutting down of people with disabilities; you will be slapped with a ‘difficult patient’ label if you attempt to self-advocate. The doctor knows what’s best, and you should sit down and shut up while the doctor tells you all about it.

This is a particularly acute problem with chronic pain conditions. Here’s what we know about chronic pain: Not much. We know that it happens, we know that women are more likely to experience it, we understand some of the mechanisms behind it, but our ability to manage, let alone control, chronic pain is rather limited. It’s a constant dance of medications and physical therapy and other options, not all of which are effective. And it’s laden with social attitudes that complicate treatment considerably, because the management of chronic pain often involves narcotic medications, and these medications are heavily stigmatised.

A patient who reports chronic pain is often assumed to be a drugseeker, or someone who is exaggerating symptoms. Women in particular tend to be dismissed when they report pain. This creates an obstacle right at the start of an appointment, if a patient says ‘I am experiencing pain,’ or ‘this pain is abnormal for my body’ and the assumption is that the patient doesn’t know what she’s talking about. There’s an adversarial relationship created right there, with the patient attempting to discuss symptoms and treatment options, and the doctor attempting to prove that the symptoms don’t exist.

Chronic pain patients who know which kinds of medication work for them often cannot ask for them directly, because this is viewed as drugseeking behaviour. Not as being an informed patient who has done some research, who knows the symptoms, who perhaps has prior experience with these symptoms and is aware of what’s worked to handle them in the past. A patient who says ‘vicodin works for me’ gets viewed with suspicion, because, well, the patient’s asking for vicodin! By name! Obviously, that patient just wants to get high. It’s inconceivable that the patient wants to skip the dance of a series of medications that will not work, as the patient knows from experience, to get more immediate control over pain.

Likewise with patients who come in with questions about medications and procedures that haven’t been brought up. Patients talk to each other. People with disabilities talk to each other. Someone who comes in to say ‘a friend said she uses botox for headaches, is that an option for me?’ is being an informed patient. Is following the rules and being proactive about health care. And is likely to be punished for it.

So, which is it? Informed patients who take an active role in the management of their conditions, who self-advocate, who know their bodies, who research before they go into the office to make an appointment as productive as possible? Or patients who sit quietly and do what the doctor tells them?