The first thing I noticed was the big blue box of Capri Sun.
“Have you heard of the Capri Sun trick?” I asked.
Donning a bright pink Love Your Melon beanie, Amanda* shook her head. She lay nestled within the starchy white sheets of her bed, her saggy skin buried beneath a fuzzy fleece blanket. Her turquoise sports bra glowed from under her plain hospital gown.
“You drink the Capri Sun and then you blow into the straw. You offer it to an unsuspecting victim, and when they try to drink it…”
She started to smile shyly, knowingly. Amanda's sudden laughter took us all by surprise.
Consumed by relentless anxiety, Amanda typically preferred to withdraw in the hospital. Dark shades remained drawn against bright hospital windows, with only the iPhone she clutched tightly as a window to the world. This transient moment, a brief glimmer of her emotion, was dazzling.
Amanda's prior hospitalization had been traumatizing for all involved, my colleagues told me. With the medical team unable to identify a cause for her intractable nausea and she unable to find any relief, their relationship became antagonistic. She was discharged home with a nasogastric tube placed for temporary nutrition, but now with a 20-pound weight loss over the past month, she was back. Something was wrong.
I sat down next to Amanda for more than an hour upon re-admission, determined to establish a good therapeutic relationship from the start. I wanted to understand who she is and what was happening in her life, and ultimately try to unravel the mystery of her weight loss. Emotionless, she answered my questions curtly and superficially. When a thorough medical work up with bloodwork, stool studies, and even scopes yielded no answers, our team was stumped.
We resumed hernasogastric tube feeding regimen to see what her body did with the nutrition. Her electrolytes gave us a clue: a drop in her potassium with persistently low magnesium and phosphorus levels. Inadequate caloric intake was the only explanation; but why? Her body yielded to our hypothesis, demonstrating appropriate weight gain with slowly stabilizing electrolytes over the next few days. The reason behind her weight loss, however, remained a mystery. I shared what the lab values were telling us each day, but Amanda continued to insist that she had been following her home regimen, mixing her formula correctly without missing any tube feeds. As one of our last attempts to understand her, we consulted psychology.
After chatting briefly, our psychologist plunged forward calmly saying, “We know from your lab values that you have not been getting your tube feedings.” She was gentle but matter-of-fact, her charge received with silence.
For a minute or so, Amanda just sobbed, wordlessly. She looked up at the psychologist, a rare moment of eye contact obscured by tears, and she faltered. “I didn't know what to do,” she confessed, her eyes averting my gaze. On a recent vacation to California, she hadn't known how to adjust her tube feedings and had forgone them entirely. Without oral intake, her body starved.
At first I was distraught, wracking my mind for ways I could have uncovered this information on my own. Ever since I was a teenager myself, I've always dreamed of being the kind of pediatrician with whom adolescents could confide. I pictured myself as someone who, within the confines of clinic rooms and patient-physician confidentiality, teens might turn to: with shy questions about sex, confessions about substances, concerns about body image, struggles with self-esteem, challenges with peers, or quiet expressions of suicidal considerations.
I had asked Amanda the same questions, probing every which way to no avail, and I had believed her answers. It hurt me to realize that she had lied to me, that she had felt so ashamed of her actions and at fault that she feared the consequences of confessing her mistake. I'm certain patients lie to me far more often than I am aware, but I had thought—had hoped—that she knew that she could trust me. I had purposefully devoted so much time and energy to making her feel comfortable enough to be open with me that I couldn't help feeling betrayed, but also more than anything, guilty. I was disappointed in myself, for I felt as though I had let her down. Somehow, despite my best efforts to create a safe, nonjudgmental environment, I had failed in this most basic and primitive part of patient care.
Perhaps I should have been more confrontational. I had delicately framed my questions, intentionally refraining from accusations because of how tense her last hospitalization had reportedly been. Part of me wonders whether it would have made a difference, though, since so much trust seemed to have previously been eroded with the medical team. I suspect she still carried baggage from her last hospitalization, and I'm not sure I could have relieved her of it.
Amanda reminded me that my role as a physician not only enables but also hinders the relationships that I may form with my patients. I forget sometimes that being perceived as a doctor can create a great chasm between me and my patients, invisible but also integral to our relationship. Even when we stoop down by our patients’ bedsides and try to meet their gaze, just being part of the medical team sets us apart from the patients for whom we care. It saddens me to realize that being a doctor can inadvertently limit how I am able to ally with my adolescent patients.
In my 1 year of practice as a resident physician, I have discovered this reality: patient-physician relationships are messy. Like the Capri Sun trick, patient-physician relationships are often far more complex and ambiguous than they seem, and they are not always what we believe. I have learned how to acknowledge the full spectrum of feelings that I have toward my patients and their families, from pride in healthy lifestyle changes to frustration against neglectful parents. Recognizing these emotions in myself allows me to move beyond them to care thoughtfully for others. These imperfect relationships have taught me forgiveness, a skill I continue to practice: forgiveness for the patients and families I care for, but also for myself.
On the day of discharge, I sat down at Amanda's bedside.
“I'm so excited that you get to go home today!” I exclaimed, over enthusiastic as ever.
“Me too,” Amanda admitted without looking at me, nodding. She continued scrolling on her iPhone, images racing across her screen.
“I want you to know that we are here to help you through this, ok?” I told her not to worry, that tube feedings are hard to do and that I was sorry she felt so alone in managing them. She listened, nodding agreeably at times, still scrolling. I rambled on about how she can call us anytime, emphasizing how readily accessible we are if any questions should arise. But I knew now, even as I said them, that words were simply not enough. I could only hope that, with time, she would grow to trust and find comfort in those caring for her.
As I waved goodbye, I noticed the Capri Sun standing tall by her bedside, glowing under the warm summer sun. Yellow straw in place, I couldn't help but wonder whether it was empty or full, or somewhere in between.
Published online: March 18, 2020
The author has no conflict of interest to disclose.
Names and some details have been altered to protect identities.
Copyright © 2020 by Academic Pediatric Association