Dear patient, I need your advice

Roni Zeiger roni@smartpatients.com

Abstract

I have the privilege of managing an online community called Smart Patients. In early January 2017, we did our first prototype, having clinicians anonymously ask for help from the patient community about how to do their jobs better.

This prototype consisted of posting the following on behalf of a Stanford oncologist:

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“Hi, as a physician in the early stage of my career I am always thinking of ways to improve myself. Recently I had to deliver bad news to a patient that his cancer had recurred after being in remission for close to 1 year.

Although I have delivered bad news many times it is never easy and each time I wonder what could I have done better in handling this difficult conversation. Unfortunately, no one really teaches you in medical training how to deliver bad news so I have had to develop my own style watching other doctors (both do’s and dont's).

This particular encounter made me more emotional since I felt I had ruined my patient and his son’s Christmas and New Year’s. I would appreciate any stories or advice regarding this type of encounter from the Smart Patients community, which I could use to further my own personal education and also as I help teach my residents and medical students.

Thank you for your time.”

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A few days later, we had over 100 thoughtful and useful replies from patients and family members. Here are just two examples:

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"Generally leave me with some optimism despite having to give me negative news. If you can leave your patient a glimmer of hope, despite the hopelessness of the case, you will be doing fine. There are always new drugs, trials, techniques that can offer hope."

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“I would look the patient in the eye and whoever came with them when you deliver the news - that, in my opinion, shows compassion. Also, admit that even though there has been a setback that you don't know when a person will die - "you don't have an expiration date XXX--that's not for me to decide." Just that statement helped us both tremendously... and if you happen to be one who hugs, a quick hug shows you care.”

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For this proposed presentation, “Dear Patient,” I propose to do the following with feedback from MedX Advisors:

* Solicit 3-5 additional key questions from clinicians
* Post these questions to the Smart Patients community, similar to the prototype described above
* Craft an oral presentation to share the most insightful and useful learnings with the audience at Medicine X
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