Being a "Good Patient"

A blog post about the pressure to be a "good patient" came across my Twitter feed last week and I can relate to many of the scenarios the writer discusses.  The author, a fourth year medical student at Harvard, describes the characteristics of a "good patient" in her post "Good patients cover their emotional cracks"--

"There’s a lot of pressure to be the stereotypical “good patient”.  It doesn’t necessarily mean inviting the medical team to your house on Cape Cod for a traditional Russian dinner.  But there are certain characteristics I’ve noticed that my medical teams like: a “good attitude”, politeness, agreeability, compliance with treatment, and the ability to understand without asking too many questions.  Fall down on one or more of these and during a busy morning we may round on you last, or we won’t round on you as a team at all.  (Instead, you will have one-on-one conversations with your physicians throughout the day, so as to spare the members of the team not directly involved in your care the inconvenience of meeting you.)"

Now, I've never experienced the "medical shunning" she describes and I don't know if that's due to me, my team or some combination.  I do know that I've felt a pressure to fit into the system and manage my behavior accordingly.  I'm not sure if that pressure comes from observation or intuition but I certainly feel it.  Those who know me and have seen my usual attitude of "this is who I am and I don't really care what you think" would be surprised at the deference I show my medical team.

Don't get the idea that there's this huge observable difference between how I usually behave and how I behave with the medical team.  It's not like I'm generally a completely self-absorbed, inconsiderate a-hole (unless we start talking college sports and you're ragging on the Gators) and become the epitome of niceness with my medical team.   Most people generally consider me a pretty likable and caring person.  But within the medical system, there is an underlying tension to be a "good patient".  It's not overwhelming and definitely doesn't interfere with developing strong relationships but I know I feel it.

When diagnosed with an incurable disorder that will require intense management for the rest of your life, the need to have a strong relationship with your health care team increases exponentially.  Multiply that when it's a rare disease with few experts and the patient is a bit of a victim of supply and demand.   Again, whether real or perceived, I have that sense. Back to my Managerial Economics class, the exit costs in this patient-provider relationship are exceptionally high.  There's also the element of knowing that your life depends on the full engagement of your medical team.  Back to Managerial Economics, the incentive to have the team, especially the physicians, really, really, really like you is also really high.

As a patient, you hear this drumbeat about asking questions, understanding your disease and treatments, and being an active partner.  What's not understood is where the line is drawn between engaged patient and problem patient.  When do questions move from accepted need to know into the realm of questioning an expert's professional competence?  How is that "engaged patient" behavior practiced appropriately?  It's like you're traveling in a foreign land that you know has mores and behavioral standards but there's no tour book to tell you the words and gestures that will offend the locals.

The inextricableness of the patient-provider relationship found in my situation does have an up side.  The providers seem to have a real sense of caring that transcends what I would normally expect.  I understand this could happen routinely in situations with serious diseases.  I recognize that my sample size of one has limitations on how broadly it can be generalized.  But this sense has been confirmed by my husband who has spent the last 35 years of his life participating in and observing patient-provider relationships.

As we discussed this dynamic the other morning, he talked about a patient he had cared for the night before.  This gentleman had Castleman's Disease and had undergone a stem cell transplant seven years ago at the University of Arkansas and was still being followed by a hematology oncologist there.  Alan said that the cell phone number for that hem/onc was in the chart.

He talked about how impressed he's been with the strength of the patient-provider relationships that he's observed...not just with me but in general...within the Multiple Myeloma team at The James.  He said, "If you went up to the average Cardiothoracic Surgeon a month after he operated on you and said, "Hello" he'd give you a sideways glance that says, 'Should I KNOW you?!?!?'"

Granted, my time working at the teaching hospital that had 13 residency programs showed me that certain specialties had a higher ego quotient.  I can imagine that with the diseases as poorly understood, and with the high morbidity and relapse rates of plasma cell dyscrasias, the ego folks may shy away from this field.  If a 0.300 batting average gets you into the Baseball Hall of Fame, I'm thinking something similar will get you into the Plasma Cell Dyscrasia Hall of Fame, if one were to exist...which would be pretty weird.  (I mean, really, purple blobs and exposed epitopes are not all that interesting to the general public.  But, it wouldn't be any more weird than the Strollin' Colon, the giant inflatable colon you can walk through at the Mayo Clinic.)

I'd love to hear from other patients with serious, incurable diseases to see if they feel the same pressure.  I recognize that my ENTP personality type may play into this.  This description of the ENTP may describe some of what's happening--

As an ENTP, your primary mode of living is focused externally, where you take things in primarily via your intuition. Your secondary mode is internal, where you deal with things rationally and logically. 

With Extraverted Intuition dominating their personality, the ENTP's primary interest in life is understanding the world that they live in. They are constantly absorbing ideas and images about the situations they are presented in their lives. Using their intuition to process this information, they are usually extremely quick and accurate in their ability to size up a situation. With the exception of their ENFP cousin, the ENTP has a deeper understanding of their environment than any of the other types. 

So, maybe some of this is just me trying to understand this new world that I will live in for the rest of my life.  I'm guessing neither Fodor's nor Lonely Planet has published a tour book.  Maybe I should.