Standing up for your patients at all costs

As I’m sure many other Telluride Patient Safety Conference participants did, I experienced many different, strong emotions upon viewing the “The Faces of Medical Errors…From Tears to Transparency: The Story of Lewis Blackman” documentary. From soul-wrenching sadness for a bright, young man’s life cut short, to profound empathy for his suffering family, culminating in overwhelming anger regarding the broken system that allowed a series of poor-made decisions and mismanaged situations lead to a tragic death.

What infuriates me most is the overreaching power the culture of independence, overinflated confidence, and not needing to ask for help that affected the actions of many of the figures involved in Lewis’s resulting sub-par care. While I feel for the medical personnel who will have to live with the guilt that their actions directly or indirectly resulted in a patient’s untimely demise, I do wish we lived in a world where people did not live in fear of repercussions when speaking up on their patients’ behalf.

I graduated from medical school a year ago, but chose not to pursue further training as a physician, accepting a position as a QI coordinator with CIR, the housestaff union, in lieu of becoming a resident myself. While my decision not to practice clinically was multi-factorial, my experiences as a 4th year medical student with a punitive culture more concerned with unrealistic expectations of self-sufficiency, assurance and pride, rather than patient safety was a primary factor. I observed and experienced many such instances, but this particular story particularly stood out to me as I processed Lewis’s heartbreaking story.

I was completing a sub-I at a rural medical center in Central California that had a typical hierarchy of attendings, residents, and med students. One afternoon, as was standard practice, our attending left for the day, leaving the resident in charge, who in turn delegated all the new ER admissions to the sub-interns. Around 5pm, which was usually the cutoff for new admissions for the morning team, my resident received a phone call. Apparently there was a “routine” pediatric asthma exacerbation in the ED. Having agreed to admit the patient without even seeing them, my resident sent me over there to obtain the H&P as the patient was being prepared to be transferred to the ward.

Much to my surprise, when I arrived in the ED I found my patient to have rather unusual facial and bodily features. Low-set ears, a severely short neck, eyes that did not make contact, multiple surgical scars on her chest. Moreover, the 4-year-old patient was nonverbal. It did not take a medical professional to immediately understand that his asthma case was anything but routine. After a long conversation with her non-English speaking mother and consulting online references, I found out the patient was suffering from CHARGE syndrome. I had recalled this rare genetic disorder from my medical school lectures, but had never previously encountered it or had a clue as to handle the constellation of cardiac, genitourinary, respiratory, gastrointestinal, and ocular malformations compounded with severe developmental delay. The young girl was in clear distress, coughing and crying, but nobody including her mother could tell if she was struggling for breath, in pain, both, or something else.

At this point it was already 7pm. As the transport team was taking my patient upstairs, I ran back to report to my resident. I expressed my concern about the complexity of her illness, the fact that she has had multiple surgeries at a different medical center, the lack of Spanish-speaking staff, and the lack of a pediatric ICU in our hospital. The resident derided me for not wanting to take on a challenging case so late in the night (we started at 5am) and accused me of not going the extra mile for my patient. Embarrassed, I rushed back to my patient, who although set up in a private room with an oxygen mask seemed to only be in more distress.

After scouring uptodate and other references for CHARGE complications and treatments and arriving with no good solution for my patient’s respiratory distress, I urged my resident to contact our attending. Hours had passed, and the most he could come up with was paging a respiratory therapist (who did some chest physiotherapy that only irritated the child) and initiating a very lengthy process of trying to get in touch with the patient’s care team at the other facility. My suggestions of simply transferring a patient whom we were clearly failing or at least involving the attending went ridiculed and rebuffed. The culture of not asking for help was deeply ingrained in this hospital. Meanwhile, both the patient and her mother were becoming increasingly agitated and the little girl’s oxygen saturation help slowly dwindling.

Despite nasty, discouraging remarks from my resident, I would not be deterred from what I sincerely felt was the best course of action for my patient. Against his wishes, I went ahead and paged my attending. When he reluctantly called back, I attempted to explain the situation as quickly and effectively as I could. Sensing my exasperation, he scolded me for “panicking” and instructed me to call back once I had “regained composure.” These disparaging comments made me feel helpless, powerless, humiliated, and incompetent. Moreover, I felt the doctors overseeing me were insensitive and over-confident; exercising poor judgement in handling this case. Not because they were malicious people or inept physicians, but because years of an accepted culture had led to a conditioning of such attitudes. Dangerous attitudes that could lead to dire consequences for the patient, who was still not getting better, despite increased oxygen and respiratory therapy efforts.

While I knew it would further hurt my standing with my superiors to once more challenge them, at this point I had little face to lose, and a little girl’s health, if not life was at stake. Firm in my belief in our team’s inability to properly care of this patient and that the best course of action for my patient was a transfer, I mustered up all my courage and re-dialed the attending to inform him of such. While I was showered with a list of critiques for having done so, my insistence and insolence paid off. Shortly after the attending arrived, and after briefly conferring with the resident, who was still on the phone with the other hospital, made the call to transfer our coughing, crying, desaturating little girl.

To this day, I am certain I made the right decision for my patient, despite the fallout and negative reviews that followed. I do not regret forfeiting a glowing letter of recommendation from that hospital in exchange for keeping my head down and possibly risking my patient’s lives. I went into medicine to make people better and advocate for my patients, not to impress attendings. Unfortunately, having faced the harsh culture of false confidence, hierarchy, and not asking for help, I became disillusioned and burned out by the state of modern healthcare in this country. It is deplorable that in such an environment our only choices seem to be to accept it at the risk of our own and our patients’ peril, or to walk away from it altogether. I look forward to a positive shift in the culture of modern medicine where patient advocates will be free to speak up, leading to better patient outcomes.