You know that feeling you get in the clinician’s office sometimes where you are talking about treatment options and your muscles start to tighten, frustration rises, and your brain starts to itch? Most likely, you are reacting to your clinician’s paternalism, which is rife within the healthcare system despite efforts to move toward patient-centricity and to “meet the patient where they are”.
The first time I experienced this, a clinician cut me out of the conversation completely. I was only 14, old enough to be told what was going on, but sent out of the room while the grown-ups discussed me and my treatment. Those visits had hugely negative impacts on me.
There are other facets to paternalism, as well:
Failure to inform. I didn’t know until last year that not notifying patients of test results if they were unclear was a thing. When I asked a doctor I trust, they said that some medical systems even have policies governing if and when to inform. Apparently, some clinicians think that telling a patient about potentially bad or unclear results could be difficult psychologically, and they want to protect us. But we are adults. Life is hard and messy, and truth is truth.
Infantilizing a patient isn’t going to change what is, and sometimes waiting in limbo is worse than hearing bad news. If we are old enough to have a condition, we are old enough to know what is going on with it. (Delivered in an age-appropriate way for children.) And if parents think kids who are sick don’t have some inkling of how serious their situation is, they are wrong. As a former very young kid patient, I can tell you, kids always know, whether it’s verbalized to them or not.
Ignoring the patient’s or caregiver’s wishes. This form of paternalism goes back a long way and is still embedded in many medical courses of study. Clinicians want the best result for their patients, and while techniques are updated as science evolves, attitudes and approaches, considered less important, are not. Clinicians are still taught that they know best because of their training, and therefore their opinion holds more weight than the patient’s or caregiver’s. Clinicians disregard quality of life considerations and the patient’s wants regarding things like avoiding invasive treatments if they don’t think those options are in the patient’s best interest. But why should anyone other than the patient or caregiver be the one to decide what’s in the patient’s best interest? As long as they have been given all the information available regarding their medical situation, they should be the one to decide.
Chronic patients are control freaks. We have to be. We have already lost control of at least one of our most basic functions due to faulty parts. And controlling what we can of everything else is vital to the stability of our conditions. Chronic patienthood does not easily lend itself to spontaneity. So, many of us seek to reclaim some of that control by exercising agency in care decisions. Our bodies, our choice, right?
Paternalism is the enemy of agency. If we are to build a system that empowers patients, clinicians need to start seeing us as partners and colleagues. Not only will that give us the control we seek, but it can lighten the burden of responsibility on the clinician. This will require a lowering of defenses and an openness to learning from each other. Seemingly impossible tasks for some of us, but we can do it.
Nothing like a little paradigm shift to start the new year.