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    joe bernstein

    I must be lucky.I have had very good experiences going back many years with various doctors who let me feel as though I might have something worthwhile to say.I'm not talking about telling them how to do their job,but just listening to what I had to say.
    In one emergency procedure I wanted to stay awake while a major hemmorhage was repaired-it was from an oral cancer surgery and I was on Plavix/aspirin so you know the score there.I had eaten about 2 hours prior to the surgery because I had no idea I was going to have such a problem.I wrote down to the anesthetist that I wanted to stay awake-she said no way could I tolerate it because they didn't want to overnumb the area to avoid aspiration(it turned out to be a moot point)-the surgeon decided I knew my own pain tolerance because he had operated on me the week before,and he said to set me up with an IV for general,but try it local-I did tolerate the surgery-it wasn't fun,but not THAT bad-it turned out I had aspirated blood before even being operated on and I was in ICU for 5 days.
    In 1981 I had an oncologist for lymphoma who made me feel like a partner in the staging and treatment procedures for lymphoma rather than a subject.He explained that I was the one who was at risk and I should not just be told things without having a chance to evaluate the potential consequences and respond.I never had a doctor quite like him any other time,and he shared the fact that he had some slight doubt about the treatment plan so he consulted with the most knowledgeable doctor he knew relating to what I had.Obviously the treatment plan worked fine(28 years)-it involved surgery/high dosage radiation instead of MOPP chemo,which was very nasty stuff with long term destructive effects.
    As a result today I don't have the damage it would have caused.
    Funny Story:During the cobalt therapy one of my radiation oncologists was talking to me about my case and couldn't feel any tumors in my neck and he was mystified.I told him they weren't in my neck-all were below the diaphragm-he said "Mr. X" I have your records right here.I had to tell him he had someone else's records in his hand.he was red faced,but I actually thought it was sort of funny(and not).

    Pauline Chen

    Thanks for sharing your experiences, Joe. It sounds like you had great relationships with your surgeon and oncologist, relationships that worked for you. And 28 years cancer-free! That's wonderful.

    joe bernstein

    I've had another cancer(oral squamose cell)cell for 11 years and 6 surgeries-still speaking and eating normally-I had 3 different surgeons on it due to a retirement and a change in medical coverage-I'm on the VA system for awhile now,but I seem to be "fortunate" enough to get non aggressive malignancies.

    John La Puma, MD

    I like your approach, Dr. Chen, and think it's terrific you are writing about it.

    Keep up the great work.

    Although too often medical ethicists have had only themselves as an audience, a number of use have been advocating patient-centered, shared decisionmaking as a model for quite some time...every since the publication of Clinical Ethics in 1982, and our own Ethics Consultation in 1994

    The future for health care is in social networking with patients: it will change the doctor-patient relationship in ways that are accountable, helpful and measurable.

    Mark Tomaszewicz


    When I read the article I didn’t know whether to be excited by thinking that people/docs are finally “getting it” or dismayed that this approach has been championed for over twenty years and it still hasn’t gained significant traction as evidenced by calling this approach “new.”
    As one who looks for the positives, I am doing my best to be excited.

    What are your thoughts in this regard?

    My firm guides hospitals in designing patient experiences. I believe a meaningful patient experience has patient-centered care at its core, but is the evolution of the model from an organizational approach.

    For further explanation I'd direct you to this guest blog post I wrote at HealthLeaders Media.

    It'd be great if you added your perspective to the conversation there.

    Mark Tomaszewicz

    Pauline Chen

    Dear Mark,
    That's a really interesting post! Thank you for sending me the link. It is hard to believe that health care changes so slowly, but I do think that there have been significant strides (your firm and the lively discussion on your blog are evidence).
    All best,

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