Why don’t patients do what they’re told?

I’ve been a regular in oncologists’ offices for more than three years. As I get to know the nurses and doctors, and as they get to know me, we can end up talking about all sorts of things.

So I hear comments from health care staff that they didn’t express earlier. Things like, “I don’t know why patients don’t just follow instructions.”

The last time I heard that comment, I almost answered.

A lot of patient education, both oral and written, is straightforward and clear, in the best of times. It cuts to the chase: take this medication every day; see me in a month.

Straightforward is good. Instead of presenting a swirl of words that can lull a patient into a fuzzy trance, they use simple, declarative sentences: “Do this.”

That’s a clear approach, such as it is. But for real communication, it’s only a start. For me as a patient, it’s no longer enough.

I used to be the super-compliant patient. Maybe it was partly due to my people-pleasing, anxious tendencies. Maybe it was simply that I knew I was lucky to be alive and surviving leukemia.

Now, I’ve had so many medications and treatments I can no longer list them all without checking medical records. I’ve been a patient for so long that I look for ways not to be a patient: to just live my life.

I just want to do what I want to do, and taking one more treatment doesn’t fit into that plan. Unless…

Unless I can be persuaded that this treatment will make me feel better. (Or that it will help avoid things like pneumonia, heart attack or stroke. That works, too.)

That’s all it takes. Just persuade me that it will improve the quality of my life.

I can give a bunch of examples. Here’s a minor one:

No one knows whether it’s because of all that cancer treatment, or just middle age, but I have chronic dry eye. There’s a medical term for it. Sometimes it is very irritating, painful, and frustrating. I use expensive eye drops. I follow up with my ophthalmologist.

The written instructions I received after an early visit with the doctor stated that, along with recommended eye drops and night gel, I should hold a hot, damp wash cloth to my eyes for five minutes a day.

I ignored that instruction for a long time. For one thing, we have an old house with old plumbing, and it takes literally five minutes of running the hot tap in the bathroom before the water gets hot. So this advised exercise actually takes me ten minutes (and a lot of water).

I don’t have time for that.

Time? I hear my husband laughing. I have lots of time.

I’m already using the eye drops and the night gel. What more do you want? Is a hot washrag really going to make any difference?

After so much treatment, and managing other chronic conditions every day, I didn’t want to deal with one more thing. It’s one more reminder that my body has issues. That this body needs lots of care.

Funnily enough, when I do take that hot-washrag advice, it is powerful relief for my dry eye. Sometimes, it’s the only thing that works. Because of that experience, I now do it at least once a day.

Maybe this patient would benefit from a statement like, “Many patients find that a hot, damp washcloth held at the eyelids for five minutes gives amazing relief.”

But I don’t mean to be difficult.

Doctor-patient communication, like any communication, works best when it’s about the partnership. It’s a dance. I want to be the empowered patient, involved in my care as much as possible. I guess I just need to be reminded about that from time to time. And maybe health care professionals can be more curious about the causes of patient resistance.

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