The call for admission came on a Friday morning; Clarisa* was a term previously healthy 2-month-old girl with an apneic episode at home. This sounded like so many other “apparent life threatening event” admissions that we would admit for a day or 2, no episodes would occur, and we would discharge them with a diagnosis of likely reflux and educate the parents on the appropriate precautions.
When first meeting the parents, I was struck by how earnestly they soaked up every word I said. They looked at me with unabashed trust when I explained how I realized that this was a scary time for them, and that we would do our best to uncover an answer and would not send them home until we and they were comfortable. Over the next 48 hours we diligently monitored Clarisa and, just as we expected, no episodes occurred. There were, however, a few puzzling things about her physical examination in addition to some abnormal laboratory tests. With each test we ran, her mother would listen attentively to our explanations and encourage us with a smile. “Do whatever you have to do,” she said. Rarely have I encountered a parent with such complete faith in our care and medical system.
On rounds Monday morning, the intern presented Clarisa while I examined her. After palpating the infant’s abdomen, she began to cry. Her face turned red, then purple, then blue. Her cries became silent, and she went limp in my hands. Her mother, standing at the bedside, cried out, “She’s doing it again! This is what she did at home!” After a few seconds of trying to stimulate her without success, I asked the resident to call a code and proceeded with the resuscitation. Within 60 seconds, the room was flooded with people. As the PICU team arrived, I stepped to the side and located her mom sobbing in the corner of the room. I approached her with a hug, reassuring her yet again that we would do everything we could to figure out what was going on with her little girl. Clarisa recovered and was wheeled downstairs to the PICU for further workup and monitoring. Looking back, I cannot remember the last time I hugged a patient or parent, the last time I crossed that boundary. Was it in medical school? Residency? As a hospitalist, I do not often have the chance to develop long-term relationships with my patients and their families. Or perhaps I have made the unconscious decision not to form these emotional bonds with my patients.
Continuing rounds that day, I could not get Clarisa out of my head. More accurately, I could not get her parents out of my head and the way they smiled at me every time I walked in the room despite having no answers for them. Somehow, I felt I had failed them. I visited them in the PICU later that day. And the next. And the next. Meanwhile, Clarisa had another apneic episode requiring resuscitation and was intubated. During my visits, I would sit with her mother and talk. She would tell me what tests they were doing and what treatments they were offering her and she would ask me my opinion. She wanted to know what I would do, as if I had anything to offer that the critical care doctors had not thought of already.
I learned that she was in nursing school, trying to make a good life for her family after having had 2 other children as a teenager. I learned that they were being evicted from their apartment because they were unable to pay the rent. I learned that her boyfriend was having trouble finding a job after getting out of jail. I learned that he had been in jail because he was found to be in the United States illegally and that they had spent all of their money on a lawyer to find a way for him to stay here, because he was brought over as a child and knew no other life. I learned that he had gotten out of jail the day before Clarisa was born and that they both saw this as a chance for a new beginning, a chance to make a life they had always wanted. I learned that he was spending every day of Clarisa’s hospitalization looking for a job and commuting back and forth the 90 miles between their home and the hospital. I learned that they were running out of money for gas. I learned that Clarisa had a structural problem with her brain and would likely need neurosurgery and a trach, her discharge becoming a thing of the distant future. I learned that I still possessed something I thought I had lost since graduating from medical school; I could still ache for a patient and their family and I could still be overwhelmed with empathy and compassion.
As the days wore on, Clarisa’s mother and I would talk about her life and I shared some of my own life. She asked me and I told her the truth that yes, I wanted children but had always been so busy working on my career that I just had not had the time. She confessed to feeling incredibly guilty for feeling stressed while she was pregnant with Clarisa, trying to keep her boyfriend from being deported, and wondering if this was why Clarisa was sick now. She asked if I thought she had done something during her pregnancy to cause this. I firmly told her that no, so many things happen during pregnancy that are beyond our control and that despite our best efforts, sometimes things do not go as planned. It was not her fault. As my time on service came to an end, I said goodbye with the promise that I would visit again in a couple weeks. Later that night, I learned that I was pregnant with my first baby.
In medical school, when choosing between Internal Medicine and Pediatrics, I remember naively thinking, “Adult medicine is depressing because it gives you a glimpse of what you have to look forward to as you get older.” I chose Pediatrics not only because the field fascinated me, but because it filled me with a sense of hope, seeing the resilience of children. I look back at myself as a medical student and shake my head at my smug lack of foresight. As I spend my days on the wards taking care of sick children, I cannot help but feel a mounting anxiety about my own gestational efforts. As much as I try to keep my own worry at bay, every time a case presented in morning report begins with “A previously healthy…” I cringe a little, my breath becoming more shallow, my heart beating faster. I search for clues in the background of every sick infant I care for. Was there something that could have been done differently? Was there something in the infant’s history? In the parents’ history? Could this tragedy truly have been out of anyone’s conceivable control? The truth is, in pediatric hospital medicine, we often do not find the clues, the definitive yet preventable cause of illness. The definition of “what you have to look forward to as you get older” has changed for me. My pregnancy planted an indelible kernel of worry where there once was the naïve perception that I had made it through the worst of childhood unscathed. On a daily basis, inpatient Pediatrics confronts me with all that could be. Because of this, I feel a new empathy and connection with my patients’ parents. Now, as I listen to the intern present during rounds I carefully watch the family, their expression, their fear or their comfort. I sit and ask them “What are you afraid of?” and “How can we help you?”
This type of presence has a name in medical literature. Mindfulness. Mind-fulness has been defined as “a moment-to-moment, nonjudgmental awareness” and “the cultivation of present-moment awareness through nonjudgmental presence, which is the foundation of the healing encounter.”1 How often are we as hospitalists fully present in the moment with a patient? It is so easy to be distracted by the last patient, the next patient, the time left before the residents need to be at clinic, the pager, the nurses, the mistakes in the medical student’s presentation, or finding a teachable moment and a nugget of wisdom to impart to the team before they scatter to write their notes and call their consults. This mental multitasking is the antithesis of mindfulness.
As a physician, practicing mindfulness in our patient encounters is highly satisfying, as we honor our commitment to being caring, altruistic, and empathic professionals. However, “practicing in practice” is not often that easy. Mindfulness can be broken down into 3 steps: pause, presence, and proceed. Before entering the patient’s room, pause for a second and be present in the moment. Presence encourages the physician to drop into the moment and to be aware of sensations, emotions, and biases without judgment. Proceed into the patient encounter fully aware of these feelings and with compassion, keeping mindful of oneself and others.1
Weeks later, I was back on service and checked on Clarisa in the PICU. She had continued to worsen. The multiple consultants involved in her care felt that, although they did not have a definitive diagnosis, her prognosis was poor. I spoke with her mother briefly, but things were not the same. The intensity of the initial bond we shared was no longer there. I found myself unable to reveal my pregnancy to her, and as the weeks turned into months and I began to show, my visits became few and far between. I felt ashamed because my inner struggles paled in comparison with her outer struggles. During these moments, I began to wonder if the true miracle was in sidestepping the minefields of embryonic development to come out the other end with the statistically unlikely outcome of a healthy child. After a decade of caring for sick children, my faith in “normal” has faltered.
Self-awareness is one of the cornerstones of mindfulness in medicine. When I ask myself why I did not make more of an effort to continue my visits, my answer is not that I was busy with my own service, my own research, my own administrative responsibilities. My answer is that I could not face the truth, that even with everything seemingly going right, the result could still be tragic. The last time I checked in on Clarisa, it was with the intention of saying goodbye, because I knew they would be discharged soon. I was hours too late. They had been discharged that morning…to hospice care. I can only hope that Clarisa’s mother forgives me for my part in sharing in our intense bond and then letting it slip away, for not saying goodbye as they moved on to the most difficult part of their own journey: the journey of letting go of their baby girl. Clarisa and her family gave me the gift of acknowledging my own vulnerability and of learning to be fully present with a patient and their family. This gift will manifest as mindfulness with my patients, and I hope that the learners with whom I work will learn from me, will be mindful and aware of their own biases and struggles as they navigate the waters of Pediatrics and come to their own conclusions about who they are and who they want to become.
FINANCIAL DISCLOSURE: The author has indicated she has no financial relationships relevant to this article to disclose.
FUNDING: No external funding.
The patient’s name has been changed, and potentially identifying information has been omitted or made less specific to protect the patient’s identity.
- Copyright © 2012 by the American Academy of Pediatrics