My introduction to the unruly patient came early and close to home.  My father liked things the way he liked them.

Our family has an unusual tradition- my father was born when his father was 50 years old, and I in turn was born when my father was 50 (this being a tradition that my wife has no interest in carrying on).

Now, partially due to the fact that he was not a young man when I was growing up, and in part because he suffered over a period of several decades the effects of being an insulin dependent type-2 diabetic (diagnosed in his early 30s), there were plenty of opportunities for me to witness my father as a medical patient.

I can say this as a practicing health care provider myself, he was not always a cooperative patient.  He was not always a pleasant patient.  A kind and compassionate man by nature, this was at times hard to see as he struggled to navigate his existence within the health care system while also wrestling with his mortality.

When I speak of him as an unruly patient, I am not referring to the hospital stay where as a teenager I witnessed him ripping out his IVs and railing against his captors in a fit of medication-induced paranoia (dramatic, though this was).  Rather, it was his repeated and much more rational insistence on having meals brought in from outside the hospital.  Roast duck.  Duck from his preferred Chinese restaurant was the meal that provided the sustenance needed to endure yet another hospital stay.

The meticulously portioned diabetic-friendly and nutritionally calculated hospital meal was repeatedly refused in favor of a covertly delivered brown paper bag of succulent and fatty roast duck.  And he was right, of course.  Hospital food may be cleverly planned to keep patient’s nutritional needs met (though I will gladly argue against this point another day), but it does not a thing to soothe the soul of the infirm.

The duck alone might sound like just a culinary sensibility (after all, who does enjoy the food during their hospital stay), but it was more than this.  Deliberate or not, my father was a natural self-advocate in the interest of good and compassionate health care.  He wanted to be treated as we all do, with respect for his situation and with an underlying humanity, and not as “the bad kidney in curtain three.”

It was an act of great personal conviction when he refused to proceed with a scheduled surgery after the doctor (who had already scrubbed), refused to shake hands before the operation.  My father chose instead to reschedule the procedure for another day, and with a surgeon who understood that making a personal connection makes a difference in the quality of care received.

It is a struggle that we all will face sooner or later.  Do we submit to the standards and practices of a perhaps inherently flawed and corporate medicine?  Or do we stand up for our right to compassionate and effective care- demanding that (despite perhaps the best intentions of practitioners, and even sometimes the best technology that modern medicine has to offer) it is still the quality of life of the patient that is the only relevant measure of success.