Making Decisions

From a comment left on one of KevinMD’s posts:

… I generally categorize patients in one of four classes: (1) patients who completely trust their doctor and want the doctor to decide the treatment, (2) patients who want to understand the possible diagnoses and treatments but who want the physician to choose the best, (3) patients who want to understand the possible diagnoses and treatments and make the decisions about treatments for themselves, and (4) patients who want to understand and want to work with the physician to reach a mutually agreed upon decision. I think that the physician should try to understand which category best fits the patient or parents and then try to work with them to reach a mutually agreed upon course of treatment. This is a tall order, I realize, given the generally limited amount of time of interaction between patient and physician.

In the past, I think I was the first type of patient.  Which is bad.  In the rare instances that I got sick, I’d go to the doctor and do whatever he said I needed to do to get better — to the extent (and I’ve said this before) that if a prescription was written, the doctor would tell me what the medicine was and how to take it, but all I really heard was “take this piece of paper to the pharmacy and follow the directions on the bottle(s) they sell you. Come back in a few weeks.”

Things are different now.  I’m more of the second type listed above.  I always know the names of the prescriptions I’m given.  I write them down so that I still have that information after I hand the prescription to the pharmacist.  I know the strength I’m supposed to get.  I know how and when I’m supposed to take the medicine. I know why I’m supposed to take it.  I want to know everything I possibly can about my diagnosis.  The fact that I want every single detail I can get doesn’t mean that I don’t trust my doctor to choose the right treatment.  I trust my doctors, but I want to understand the disease.

In fact, I think that learning about a disease can influence the trust patients place in a doctor.  Everything I’ve learned about my disease makes me trust my doctor that much more, because I’ve learned what standard treatment is for my condition.  When a doctor recommends following a typical treatment plan, it gives me confidence that the doctor knows what he’s doing.  It builds trust.

When a doctor doesn’t follow a typical treatment plan, I have to wonder why.  That might have been part of the conflict with my first rheumy.  The first time I left his office I had a diagnosis but no information.  When I started reading about RA, everythingrecommended early, aggressive treatment with DMARDs.  I had a prescription for an NSAID, but no DMARD.  That didn’t really make me think he knew what he was doing.  I remember another appointment when he told me the names of three different medicines (none of them DMARDs) and asked which one I wanted to try.  I don’t know anything about any of these medicines. I don’t know what they’re supposed to do.  I don’t know side effects. I don’t know how much they cost.  I don’t know benefits or drawbacks of any of them.  Exactly how am I qualified to make any decisions about this?  And why aren’t we looking at DMARDs?  We wasted months that I can never get back. Even later, after a DMARD was added, I never fully trusted that he was doing what was best.

Doctors talk about patient compliance.  Do they understand how difficult it is to be tied to pill bottles?  Patients with a chronic condition need to understand what’s going on. Only when I understand the course of my disease do I realize how important it is for me to make time to exercise and to arrange my life around my meds.  Understanding is crucial.  It’s what makes the difference in my being willing to follow a long-term treatment plan.  It’s what gives me confidence that my doctors’ treatment choices are trustworthy.

What do you think?

 

In a future post, I want to look at patient-education options. Given the limited amount of doctor/patient time, how can patients learn what they need to know?