Nothing About Me, Without Me at #TPSER8

As I reflect on last week in Telluride, I keep returning to the exchange on informed consent and shared decision-making that was stimulated by watching Michael Skolnik’s story on film. The group concurred that their training around informed consent was all but non-existent during medical school and residency. As the conversation continued, it became clear that true patient-centered care would include this often missed opportunity to better understand a patient’s needs, values, preferences and goals as they relate to the risks and benefits of any (and every) procedure. What is successful hand surgery to a painter? Or knee surgery to a prima ballerina? Or heart surgery to a seventy-five year old grandfather who just wants to dance at his granddaughter’s wedding? How does that compare to a successful outcome for the surgeon? And perhaps just as important, does the surgeon know if her patient is painter? A dancer? A grandfather? And if not, how will that surgeon know the best way to proceed if a decision needs to be made on the patient’s behalf?

This is the “nothing about me, without me” that Harlan Krumholz MD mentioned during Michael’s story, and whose excellent piece on informed consent and shared decision-making published in JAMA can be found here. Krumholz was quoting Don Berwick MD, who co-authored a paper, Healthcare in a land called PeoplePower: nothing about me, without me in Health Expectations. This paper, published in 2001, was a result of a five-day retreat in Salzburg where health professionals, patient advocates, artists, reporters and social scientists gathered to discuss ways to best partner in healthcare–from shared decision-making on through policy and quality contracts. How powerful to have the patient as a partner when a critical decision needs to be made on their behalf–to know that as many potential risks as possible have been discussed, and that the decision to be made is the patient’s choice. Think of the comfort in having that knowledge if a less than optimal outcome occurs. It becomes a team loss–not two new adversaries taking sides.

With all the thought-provoking conversation and sharing of ideas this past week in Telluride, why not craft your own “Salzburg Seminar” paper? As the next generation of medicine, you have the power to create the new culture of medicine based on all the values discussed this past week, keeping the patient at the center.

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