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« Dumbing it Down is Downright Disrespectful | Main | Leadership Lessons Learned From Childrearing »

I Know What Kind Of Experiences I Will Want My Patients To Have.

By Isaac van Sligtenhorst

I know what kind of experiences I will want my patients to encounter.

We wait.....and wait......and wait in the Clinical Trial department.  Finally, someone whom we presume is the research coordinator, as she fails to introduce herself, enters the room.  My brother did not get into the PI3K inhibitor clinical trial as the company had temporarily halted enrollment.  She starts going into a potential alternative clinical trial for my brother.  She starts spouting off words like 'Bendamustine' and 'Avastin' and then asks if he has questions.  Really?  Short of someone with training in oncology, what person is going to know what these words mean, much less if these are good drug options for him?  I ask for some basic enrollment questions and she's not even up to speed on the specifics.  Great.  She leaves (thankfully) and we wait for the doc....and wait.....and wait.  Nearly three hours after our appointment time, the doc walks in, sits down, and the first thing out of her mouth is, "do you have any questions for me?"  I can hear my brother's frustration as he tries to wrap his brain around what in the world is going on.  We showed up early that morning so he could get bled to determine if he'd be eligible for a PI3K clinical trial.  Now we have a Plan B thrown out there with absolutely no background given and the doc is asking for any questions.  Fine.  I've got one.  "I thought avastin was contraindicated in squamous cell tumors.  Can you please comment on the risk of hemoptysis in combining avastin with a cytotoxic agent in the context of a squamous cell morphology?"  No?  Then please go do your homework first before entering into the room.  I understand this doc was covering for another but have the professional courtesy to at least glance at the chart before entering the room.  Walking in with no prior knowledge of the patient's diagnosis and status just isn't helpful at all.  At least review the bloodwork, but no, we didn't even get that.

Experience #2

Again, we wait.....and wait.....and wait.  This time it’s for Supportive Care to review my brother’s pain management.  The wait is not quite as bothersome because A) we didn't have an appointment and it was only through their kindness that they agreed to squeeze my brother in and B) there's a comfy bed for my brother to snooze in.  But still we wait.  The nurse comes in and he gathers the basics.  Back to waiting and the nurse quickly peaks his head in.  My mom asks, "any idea how much longer it's going to be?"  Just a few more minutes.  The doctor is reviewing my brother's chart.  What a novel concept.

He comes in and begins the usual, "tell me what's going on."  My brother has to be sick of repeating his story hundreds of times over and I suppress the urge to give a quick medical review of him to save time but I know the doctor needs to hear it from the patient's mouth.  From his accent, I can tell the doctor is Canadian, eh, but I don't hold it against him, eh.  He is soft spoken, calm, patient, and attentive.  My brother asks him some questions.  I ask some.  And my mother asks some.  He thoughtfully engages each one in turn, draws diagrams to help explain his logic, and gives firm answers when necessary.  He is clearly in charge of the situation and carries a certain degree of quiet confidence (reviewing the chart helps, too).  But most importantly, he has the presence of mind to look at my brother's pain management thus far, looks at the severity of pain being experienced and says, "this obviously isn't working.  Are you game to try something different?"

I know what kind of experiences I will want my patients to encounter.

About: Having spent nearly 15 years at the bench in drug discovery, Isaac van Sligtenhorst now helps his dad and brother walk through their fights against cancer, while during his spare time he is currently attending med school at UT Health Science Center in Houston, Texas. He blogs at

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