When patients say no

What happens when the patient doesn’t cooperate?  What does patient-centered care look like with non-compliant patients?

 I was talking with a few friends not long ago.  Our conversation somehow got to the issue of authority, and what exactly respect for authority looks like.  One of them, trying to make a point, turned to me and asked: “So you surely deal with people who don’t listen to what you have to say.  What do you do when your patients don’t take the medications you prescribe?”

I think he was expecting me to to be Mr. Furious and lash out against the patients who don’t give proper respect for my authority.  Most people have heard how irritated many doctors get when patients are non-compliant.  “Well,” I said, hesitating, “I guess I just ask them why they aren’t taking them.  There’s got to be a reason for it, and I try to figure out why.  It could be that the prescription costs too much; it could be that they are afraid of side effects; it could be that they heard something bad, or have some other bias against the medication for a reason I don’t know; or it could be that they just don’t understand why I think they should be on it in the first place.”

I totally wrecked his point, which made me glad because I didn’t agree with it anyhow.

Since I am in the midst of a series of posts on patient-centeredness in healthcare, I need to take a quick (1,200’ish word) detour to an important related question: what happens when the patient doesn’t cooperate?  What does patient-centered care look like with non-compliant patients?

If you look up the word “compliance” in a thesaurus, the first synonym (at least in my thesaurus) is “obedience to.”  This implies that non-compliant patients are, at least to some degree, equivalent to disobedient patients.  This is borne out by the reaction many patients seem to expect of me when they “confess” they haven’t taken prescribed medications: they look guilty — like they are expecting to be scolded.  I guess scolding is what they’ve had in the past.  Certainly hearing my colleagues complain about “those non-compliant patients,” I am not shocked that they scold their patients.  It’s as if the patient is not taking their medication with the express intent of irritating their doctor.

But this is a very doctor-centered view of things, not patient-centered.  It assumes the doctor is the one who should be in control, and the patient’s job is to “obey” what they’ve been told.  It is a “prescriptive” type of healthcare, telling people what they should do.  Doctors, after all, give “orders” for things, and the Rx on our prescriptions translates to “take thou.”  We are the captains of the HMS healthcare, aren’t we?

Perhaps this was the case when we held on to our “special knowledge” that others had little access to.  Before the Internet, doctors were often the only source of medical information. People could go to the library and look things up, but most didn’t take the time to do so, and there was still an air of awe given to doctors, who should never be questioned.  Things have changed.  Now all of the information I’ve got and knowledge I gained in my training and during my practice is available to everyone any time.  Sure, people lack the context in which to use much of that information, but they can (and usually do) check their medical questions with Dr. Google.

This changes the whole dynamic of the relationship between doctor and patient.  Many would say this is for the worse, but I disagree.  My father has recently (as I’ve documented) been going through significant problems with his back.  While it’s my normal practice to avoid being a meddler in the care my family gets, I’ve had significant cause over the past six months to worry over that care in respect to Dad’s back.  By my urging, my parents (who grew up in the age of the high priesthood of doctors) have asked far more questions and have gotten better care as a consequence.  “Yeah, but you’re a doctor,” some might argue.  So then are only doctors able to question care they (or their loved ones) are getting?

No, we should welcome questions from our patients, as they may just point us in a direction we hadn’t considered.  Since I’ve been more engaged with my patients in this practice, I have seen them open up to me much more about things because they perceive that what they say matters to me.  I respect what they have to say about things, so they talk to me and don’t hold back on their fears or concerns.  This means that people are much less scared to talk to me about things, much more likely to confess their alcoholism, their depression, or their concerns about medications they are taking. All of these things allow me to give better care.

So what does patient-centered care look like in a world where the patient is a participant?  Here are the rules I follow:

• The patient always deserves my respect, and should always perceive that respect.  It’s not enough to respect them, I’ve got to show that I do.
• It’s their body, not mine.  I can think it makes sense to get a surgery or take a medication, but they are the ones who have to get cut on or put the foreign substance in their body.  I have to approach them with this in mind, asking about their fears and concerns, and not assuming the fact that I prescribe or recommend something that they will not question it.
• I may know more about medicine than they do, but they know more about their own bodies.  There is an old saying in medicine, “the patient will always tell you what is wrong with them.”  In other words, it is our job to listen, to ask questions, and to discuss things with them so that we can know what is going on.  Many docs are far too quick to disbelieve symptoms the patient reports, and so many patients are afraid to tell of symptoms that “don’t make sense.”  This can lead to mis-diagnosis.
• It’s more important to get it right than to be right.  If the patient comes up with the diagnosis then hooray.  I don’t care how we come up with it.  Who cares if they looked it up on Google.  I look up my non-medical problems on Google. Should plumbers, electricians, or geologists be mad at me when I look up information in their areas?  I could care less.  It’s my pipes, my wires, and my…rocks.
• I want my patients taking responsibility for their health.  As I said before, what happens between appointments is far more important than what happens in them.  This means that my job is now one of teacher, interpreter, and encourager.  If I can’t explain why they need a medication, they shouldn’t take it.  If they have questions, fears, or concerns, I want to hear about them.  Most of all, I don’t want people worrying about being scolded when they come to my office.  I’m not their mom.
• In the end, it’s their choice.  If after explaining, listening, educating, and even warning, people don’t follow my instructions, I’m OK with that.  My job is to let them know the risk of their choices.  Once I’ve done my part, I don’t lose any sleep about their choices.

As it stands, I feel my patients are quite compliant with what I recommend.  They comply as long as I’ve done my side of the agreement, and they tell me if they don’t do as I recommend.  I wish other docs would lighten up and stop thinking we are in the Marcus Welby world of prescriptive medicine.

We aren’t, thank goodness.