I’m constantly reading and tweeting about healthcare issues, patient safety and health advocacy. Occasionally I find this “world” of health issues connecting to other “worlds” of importance to me. That’s what happened just this past week. As I was listening to a recent presentation by Robin DiAngelo on White Fragility: Building White Racial Stamina, I was struck by her descriptions of the power imbalance that our culture creates which has systematically and historically polarized the races. Like the fish, we have been swimming in our own culture our whole lives, and don’t even realize we are in it. I’m not speaking here about acts of racism but rather of a system created for white Americans by white Americans. Similarly, our health care system has huge biases that do not help patients.
The system truly is stacked against the patient/family in terms of the distribution of power and decision-making (1). Unless healthcare professionals invite patients/families not just “to the table” but into the power dynamic, there can be no balance possible. For even with such an invitation to sit at the table, it matters whether there is also a sharing of power. Patient Advisory Committees, by their usual description, can only advise. Who ultimately makes the system decisions? How many stories do we need to hear from healthcare professionals who, suddenly finding themselves as patients in their own system of care, realize how imbalanced the power is even for them as patients (2)?
This is extremely important because when patients and families are given the opportunity to be heard, healthcare professionals may be surprised by what they hear from patients. Whether it is a matter of tone or how procedures and policies translate into what patients actually experience, it is incumbent on healthcare professionals and administrators to create opportunities to listen humbly and partner with patients.
Patients/families must share in the power in the healthcare system or they will find themselves dismissed the first time they speak an unpleasant truth.