Control and Agency for Patients

I was just having a conversation this morning with someone about the notion of control. It kind of takes on a negative connotation, like a “control freak” or “being controlling”.

But that’s a really important impulse in human beings. Maybe the softer word here is agency. We’re not trying to force control. Instead, you’re trying to exercise your agency because your primacy has to be considered. Otherwise, it can feel like things are just happening to us.

It’s so difficult to find opportunities to make sure that the patient and caregiver have control where it exists, but more importantly, to help them feel this sense in their bones, wherever they are. They are part of this puzzle.

They’re not on the side where their condition or illness is happening to them.

This is the is the hazard in medicine: referring to people or thinking about people as their diagnosis removes agency from our patients.

Our response to our diagnosis, what we do with it, how we live with it, how we move with it, how we define it. All of that comes with agency. So like any healthy relationship, all parties have to have some agency.

It’s not a passive process.

Part of the work here for each of us as caregivers, friends, and patients is looking for where we actually have agency, and building that out.