Abstract
December 27, 2014. My father lost consciousness in the bathroom. The paramedics took him to the emergency department, where I held a pink bucket in front of his face and watched as he vomited blood into it. At the time, I was a fourth-year medical student in the midst of pediatric residency interviews. Less than a week later, the resident called with my father’s biopsy results. I heard the words “gastric adenocarcinoma,” and my mind went blank. Computed tomography scan, positron emission tomography staging, surgical oncology, lymph node dissection, tumor board, chemotherapy, and radiation oncology—these words, which I had been familiar with in lectures and on the wards as a medical student, swirled around me as if they were a foreign language. At that moment, I was tossed into navigating the medical system both as a soon-to-be physician and, more importantly, as a daughter. As pediatricians, how do we interact with the family members of our patients? I notice that the families who are quiet, are agreeable, nod their heads yes to everything you say on rounds are the families we like. The family members who pepper you with questions or challenge your plan on rounds are the families we consider annoying and difficult. But here’s the thing. I am that annoying family member. I was the daughter who repeatedly paged the oncology nurse through the call operator because the mail-order pharmacy would not be able to send my father’s oral chemotherapy drugs on time. I was the daughter who would be at the bedside every morning before the residents even prerounded, anxious to hear the plan for the day, holding a list of questions, and wanting to make sure they did a thorough physical examination. I had even been flagged in my father’s electronic medical record—every new resident and fellow who I met somehow already knew who I was and would say in a deprecating tone, “Oh. You’re the fourth-year medical student daughter.” I remember a poster in elementary school displaying a shimmering light bulb, excitedly declaring, “Knowledge is power!” But for me, knowledge was debilitating. My medical school continuity clinic was in pediatric neuro-oncology. I knew how intolerable chemotherapy could be. I obsessed over my father’s laboratory values. I took copious notes at every clinical encounter. I scoured the literature as if I were preparing for my qualifying examination again. I knew far too much and was simultaneously plagued by a thirst for more information, anything tangible I could grasp. I was that annoying family member because I was terrified. Anger, anxiety, frustration, and fear only begin to describe this vortex of confusion and perpetual worry. It is so easy for us to view family members as irritating roadblocks to our incredibly busy days. But when you work collaboratively with families rather than antagonistically, I would argue you get better patient care.1,2 My father had horrible gastrointestinal adverse effects after his second cycle of chemotherapy. Initially, his team decreased the dose of one of his chemotherapy agents. But I felt that this was just not enough as he continued to have weight loss and significant dehydration. So my family pushed the team to do more. Together, we came up with a simple plan for him to receive scheduled intravenous hydration twice per chemotherapy cycle to make up for fluid losses. I think of this all the time when I take care of my pediatric patients. Their parents are the ones who care for them, day in and day out. They know their own children far better than I do. It is so simple for me to write off family members and dismiss their concerns and questions, especially on a busy service. But I remember being treated like I was a nuisance, and I never want a parent or family member to feel that way. I constantly remind myself that the pomp and circumstance surrounding morning rounds, the formalities of our presentations, and the jargon we use to communicate with one another are not routine for my patients or their families. So each day I urge myself, especially on those days when I am drowning in paperwork, to connect with the family members of the patients I am caring for and to empathize with the frightening experience of having a child in the hospital. I learned a tremendous amount advocating fiercely for my father. I now know deeply the value of listening. I know there are times when silence is more powerful and comforting than conversation. I know that humor and laughter are often overlooked yet highly effective medications. Ultimately, I know that it is an immense privilege to become an integral part of a patient’s family and life, and I am grateful every day for the trust that families place in me. Back to top Article Information Corresponding Author: Jessica W. Tsai, MD, PhD, Boston Children’s Hospital, 300 Longwood Ave, Boston, MA 02115 (jessica.tsai@childrens.harvard.edu). Published Online: May 2, 2016. doi:10.1001/jamapediatrics.2016.0195. Conflict of Interest Disclosures: None reported. Additional Contributions: I thank my father for constantly teaching me that gratitude can be found even in the most difficult of times. Claire McCarthy, MD, Boston Children’s Hospital, Boston, Massachusetts, Moytrayee Guha, MPH, Massachusetts General Hospital, Boston, and Fanuel Muindi, PhD, Harvard University, Cambridge, Massachusetts, provided thoughtful comments and feedback; they received no compensation. References 1. Muething SE, Kotagal UR, Schoettker PJ, Gonzalez del Rey J, DeWitt TG. Family-centered bedside rounds: a new approach to patient care and teaching. Pediatrics. 2007;119(4):829-832.PubMedGoogle ScholarCrossref 2. Webster RJ. The art of not being a difficult parent. J Clin Oncol. 2013;31(32):4158-4159.PubMedGoogle ScholarCrossref
Journal
JAMA Pediatrics
– American Medical Association
Published: Jul 1, 2016
Keywords: communication,pediatrics,personal narratives,physician-patient-family relationship
