“No decision about me without me.”

Day #2 of the Telluride Summer Camp was even more invigorating and inspiring than day #1. Between John Nance’s talk and the film about the Skolnick family, I feel that my fellow students and I have been given a call to action. The resonating statement that summarizes our new mission was said, of course, by Dr. Donald Berwick himself: “No decision about me without me.”

The principles of shared decision-making, transparency, and patient-centered care all revolve around the concept that the patient is the subject of our care, not the object (as so eloquently put by John Nance). If we consider the patient as a living, breathing individual, then we would certainly reconsider some of the daily decisions we make in healthcare that we consider mundane. One can argue back and forth to what level the patient should be involved in their own care (i.e. should we obtain permission for each individual blood draw when additional diagnostic tests are indicated), but there is no arguing the point that any decisions made cannot be made without the patient’s understanding.

To me, the discussion over transparency gave me pause as I pondered the hundreds of patients I have seen during my third year clinical rotations in medical school. Was I as open I could have been with my patients? How many times did the team decide the plan and fate of a patient in my care without directly including the patient’s thoughts, concerns, or opinions? How many times have I witnessed a resident physician tell a nurse “Oh, just give him an Ativan” without seeing or examining the patient? And how many times have I walked into a room 30 minutes later asking, “How do you feel after the medicine?” only to hear the most scary response of “Which medicine did they just give me?”

In hindsight, it seems like the most egregious violation of the patient’s basic human right of autonomy and jurisdiction over their own body. How did we ever make the mistake of thinking that someone’s body, mind, and soul could be taken under our imperial control and governance? To read back my own words, it sounds like an absurd notion. My body is my most valuable and personal belonging; when did I give that up? Is that what I gave up when they told me they “just needed my signature on this consent form”?

 

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