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I almost got goaded into undiverting an ileal conduit for urinary - neurogenic bladder from myelomeningocele and self cath wasn’t around yet. My vestigial bladder was tested for volume (I was 17 and had gotten the stoma at 5). 10cc. The suggestion was to use colon to fashion a bladder and then self cath. I tried a self cath and HATED it. Was told I’d get used to it. I stood by my decision and have been perfectly fine with my ostomy - you would only know I’m different by the speed of which I pee. None of us knew I’d get Crohns at 54. Large bowel has been a bear to tame, but I also knew something was up because my stoma (rebuilt with a segment of colon) got Crohns as well! I can only imagine the torturous surgery of undiverting the undiversion! I’m so glad I stood up for myself then, and recently I ran into my doc and he said it was a great lesson for him; he assumed that having an ostomy would be less favorable based on HIS experience. Based on mine it’s not even an issue!

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As usual, I find your reflections capture the work of a seasoned clinician very well. But as I listened to these examples, it really seems to me that this is how we continually "up our game" in medicine. "learning from patients" is exactly what medicine is all about - how we each adjust our approach. It is what makes a seasoned, experienced clinician truly special. Many times a day, I am struck by observing how I've changed my approach to all kinds of things slowly over the years. You eventually obtain deeper understandings of things that work and things that don't. You watch things "play out". Learning your own limitations and embracing more flexibility. Newly minted doctors are much more rigid and by the book. And well they should be. The years of experience add that layer of clinical acumen. What is truly sad is that the business of medicine does not give any value to this experience - in the world of "RVU widgets", we all get get reimbursed by the volume we crank out and not for any of the value experience can provide.

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What has always stood out to me was how much I was able to learn and grow clinically from the times I was able to accept a patient-criticism with an open mind. Even if I had "my side of it" and may not have fully agreed with their complaint, the more I was able to look for the kernel of truth in what they said, the more I learned from that situation. Being not as common, those learning opportunities really stand out for me. I'd encourage any young physician to avoid full resistance to criticism and see how they can use the situation to learn and grow.

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So well said. Although "practiced based learning" is said so much it has lost all meaning, it is really the key.

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Two things: First, the Pediatric Harriet Lane Handbook has long carried a Serum Porcelain Level!

Second, remember statistics be damned when the patient (Outcome =100%) makes the final decision. We can recc but leave it up to them. As long as their decision is not overtly harming an innocent party. Call it “bad” only if YOU are! We all know those that chose lifestyles and had results we could not believe. e.g. May have 2% absolute decrease rate but 18% still died ON the treatment.

All that said, keep it up we are never too old to learn (73yo, 45 yrs in FM(GER, Obesity Med)). Read some Brene’ Brown!

Laverne Miller MD

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I’m a patient, not a doctor.

I wrote a letter to my doctor explaining why I’m stopping statin. On the next appointment he brought my letter with him, and the relative risk reduction number for statin. I asked if he had the absolute risk reduction, which he did not, but added emphatically that the efficacy of statin is not debatable. As I have perused a number of statin RCTs I decided to not pursue the issue. We had amicable consultation to the end of the appointment. As I was leaving I said to myself, I need to find another doctor.

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The part where you describe how you are comfortable telling a patient that you think their decision is bad and then saying it's theirs to make startled me. The mere act of telling someone that their decision or statement is wrong or bad makes the situation about you, not them. The decision isn't bad it if it's good for them. Who are we to judge what others deem important in their lives. I have walked away from such events shaking my head and grieving over a choice the patient has made. And then I compound that with scolding myself because I didn't have a dog in that fight to begin with. Just who do I think I am? I am merely me. I am learning and teaching myself to be ok with my patient's decisions. It reflects their independence and judgements made with good information. And, who knows, this may be their last independent decision.

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Totally understand but what about when the decision is, medically, objectively wrong. You are post MI, you need to take a statin. You have early COPD, you need to stop smoking. Sure it is not my decision but isn't it my job, as a doctor, to clearly and explicitly say that medically, not taking the drug or continuing to smoke is a bad decision?

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I agree with Linda - using the term "bad decision" does not seem to truly respect the patient's autonomy. You describe laying out the risks and then giving your professional advice (ie, stop smoking). They then make a decision that takes all of this into account, but is not what you recommend. How is that different than any other autonomous decision? Who can say that deciding to take 20 mg of prednisone daily is "reasonable" and to continue smoking is "bad"? I don't encourage smoking to my patients. But I once asked a 97 y/o patient what her secret to longevity was (she was a vibrant woman who loved to play bridge) - her response to my question (secret to long life) - "smoking! it kept me calm and relaxed". (at 95 y/o, I specifically remember telling her "you are my only patient that I am NOT going to tell to quit smoking - whatever you are doing seems to be working well"). I think the bottom line is that patients ARE the true decision makers as you rightly point out. We may not agree with decisions, but it is not for us to give any moral judgement to those decisions. It only affects them. I don't let patient-decisions seem "good" or "bad" - if I truly disagree with a decision (and feel strongly) I'll probably spend more time and repetition in advising of the risks or benefits - sometimes down the road they do change their minds, sometimes they don't. This is some of what keeps clinical medicine interesting!

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Your words struck home as I recently had to be the advocate for a dying friend in Honduras. She wanted to be DNI/DNR and to go home, they wanted to keep her in the hospital at great expense and keep aggressively managing her symptoms of end stage heart failure......... It was interesting as I explained to them who she was, and as she would routinely curse them, they came to understand her independence and that she DID NOT want to prolong her life in the current state, and it was not going to get better. The doctors all eventually came to understand who she was and respected her decisions, she died peacefully in the hospital a day after i told her i would arrange air transport to return her to her home on Roatan. Having been a patient with Scleroderma and a nurse, I try and educate and advocate for my friends in my retirement.

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Sounds like you are doing amazing work. Thank you.

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Dr. Cifu, I hope your colleagues listen to your wisdom so they can vicariously learn through your experience! It's good that MM had the self-confidence to speak up to you. My mother-in-law was of that same generation, and it didn't occur to her to question a doctor, so she took an overdose of doctor-prescribed vitamin D for many years (parathyroids had been removed and there was an apparent miscommunication between doctors). As a result, her kidneys were destroyed.

Your writing brings to mind a couple of my favorite Carl Rogers quotes:

“When a person realizes he has been deeply heard, his eyes moisten. I think in some real sense he is weeping for joy. It is as though he were saying, 'Thank God, somebody heard me. Someone knows what it's like to be me.' ”

“The more I can keep a relationship free of judgment and evaluation, the more this will permit the other person to reach the point where he recognizes that the locus of evaluation, the center of responsibility, lies within himself.”

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Such good quotations. Thanks so much. Adam

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