#ListenToPatients is my favorite social media hashtag. Usually, it’s in the context of clinicians disregarding the patient’s lived experience and substituting what they THINK is our experience. But there’s another way that patients need to be heard — when it comes to setting the agenda for conversations.
Clinicians, especially those in a family practice, are under a great deal of pressure to follow standard procedures. They have to review prescriptions (because failing to do it is the source of a lot of malpractice claims). During initial appointments, they have to ask some basic questions mandated by the owner of the practice or their malpractice insurer or the patient’s health insurer or by law.
The problem, for the patient, is that the list of things the clinician needs to ask before getting to the reason for the visit is so long, and the time available for the appointment is so short, that the patient gets cut off before getting to what we want to talk about.
I totally understand the reasoning behind a lot of the required questions, which are designed to elicit risks that a patient might have, but may be reluctant to talk about, e.g., domestic abuse, other unsafe living conditions (risk of falling), and depression.
The problem, for me, is twofold. In my experience, the questions don’t actually inspire real conversations, because they’ve just become time-wasting background noise. They’re just something to get through, so you can move on to the good stuff, the reason why you made the appointment.
Second, and this is what really bugs me, is that it’s yet another way of not listening to the patient. The patient should be able to set the agenda for the appointment. We should be able to say, “Look, this is why I’m here, and that’s what I want to talk about, not my risk of falling or domestic abuse or depression or anything else.”
But instead we need to sit there and review our meds, which haven’t changed in five years, and deny being depressed (even though of course we always are to some extent, because, hey, chronic pain is depressing), and give our pain a rating even though it’s been pretty much the same for twenty years and there’s no treatment for that pain, and agree that we need to lose a few pounds, and explain why we can’t do certain routine tests due to limitations of our rare disorder (bone mineral density scans are a waste of time for me, because my calcifications read as if they were useful mineralization). And half of the allotted time is up before I finally get to say, “So I’m actually here to find out if I’ve got Lyme disease.” Or whatever. (Yes, I got Lyme Disease last year, so I’ve lived this particular scenario.)
Usually, it’s not a big deal, just a minor inconvenience to have to sit through all the repetitive material, and I’ve learned it’s easier and quicker to just go through the questions instead of trying to skip them. But sometimes it’s just too much to deal with, on top of the anxiety that a lot of us experience when interacting with a health care provider, due to bad experiences in the past.
I had a primary care provider a while back, who was a lovely person, and perfectly competent, but I always left the office angry, because they wouldn’t let me set boundaries on what I wanted to talk about. I viewed the primary’s role as keeping an eye on my blood pressure and cholesterol and routine testing. They had zero expertise with XLH, and I didn’t expect them to be up to date on a rare disorder. I just wanted to be sure I didn’t die of heart disease while my endocrinologist, who isn’t an expert in heart disease, focused on my XLH.
Except every single time I went in to see my primary for a routine follow-up on my blood pressure and labs, they would ask me about my XLH pain and whether I needed meds for it or a referral to some other specialist for my XLH. And I had to explain that I’d exhausted the possibilities for pain relief, and there was nothing that could be done about it, and if I changed my mind about that, I’d go back to my previous pain specialist on my own. I’d have to explain AGAIN that there was no treatment for XLH (this was pre-burosumab), and that surgery wasn’t a viable option for me.
Which doesn’t sound so bad. So what if I had to repeat myself? But it’s not that simple. I understand that primary care providers see so many patients and can’t remember us all. I’m perfectly happy to fill in gaps. What I object to is not being listened to, not being able to say, “I don’t want to talk about my pain or my XLH. I just want to talk about my blood pressure and lab work.”
Not being heard in a medical setting takes me back to childhood memories of doctors talking over my head (literally and figuratively) in the clinic, discussing my gait, talking to each other, and never to me. it’s infantilizing and it undermines the sense of having some control over one’s own health care.
I don’t have a solution. I know the pressures on health care providers are immense, and there’s a shortage of health care providers nationwide, not just where I live. I just needed to rant a bit today about one more way that the health care system is just not set up to #ListenToPatients.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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