Navigating Uncertainty in Medicine With Our Families

I first met Arya on her late-night arrival, where she appeared irritable and pale but arousable. However, she quickly became more lethargic and unresponsive. Therefore, my immediate plan was to initiate the sepsis protocol, begin resuscitation with intravenous fluids and antibiotics, and perform a lumbar puncture. The challenge in all this is how to effectively communicate the overwhelming number of mandatory steps that would rapidly take place to parents, while admitting I was unsure why exactly this child appeared so ill. Therefore, my communication focused on urgency and directedness. However, I soon learned Arya had recently been assessed at an outside facility but discharged with reassurance. Considering this and the clear sight of fear in her mother’s eyes, my approach transitioned toward building trust in the immediate providers and in this unfamiliar hospital. Rather than reporting the frequency at which we treat such cases, or relying on the ego of my degree, I simply told her everything I could, while providing openness in the segments I could not. Throughout this process, Arya’s mother remained composed; she understood our shared goal of stabilization, while understanding the very real possibility that Arya may not survive. Overnight, her clinical status worsened requiring intubation and transfer to the pediatric ICU (PICU).

The night my husband and I brought Arya to the emergency department felt not so much like a whirlwind, but a hurricane with no signs of relief. I can recall distinct moments and images, but really could not tell you what was happening. Phrases like “I am here with a septic infant” from the clinical staff can never be truly forgotten. Although I did not know what it meant, I knew it was dangerous. Other times it was the silence, the lack of conversation during the mayhem of hissing oxygen, flashing lights, beeping monitors, and a crowd diving on top of Arya while new lines rushed in and out of her that explicated the severity of her situation. By the following morning, we were in the PICU. I distinctly remember leaning up against the corner of the door while the intensivist discussed possible outcomes, with a clear indication that the situation would be devastating.

Arya was in a coma for 9 days. Between the microwave meals and brief attempts at fresh air, my husband and I discussed everything, asking: what are our options, what if she dies, or what do we do if she does not ever wake up? Then, something happened that we felt most unprepared for: she woke up. Although ecstatic, we realized we were not ready to face the new questions at hand now that she was conscious. It seemed our conversations became harder the more she improved. As she began breathing off the ventilator and her brain activity enhanced, we struggled with the complexity of our questions moving forward, now asking: do we want to continue maximum care, or how do we approach quality of life in the setting of unknown disease severity? We needed our medical team to provide us with as many answers as possible, regardless of whether we wanted to hear them.

Throughout Arya’s hospitalization, the most important aspect of her care and recovery was feeling that the team was proactive rather than reactive. The team constantly considered potential outcomes and care alternatives, rotated ideas, and openly discussed possibilities with us creating a true conversation in which both sides could equally share. The ability to participate in group discussions provided multiple avenues to ask questions, reask questions, and to feel there was always someone listening. With this model, even when we had no answers, we knew the process.

The greatest challenges arrived with each step-down of care. The transition from the PICU to the pediatric floor meant losing highly dedicated and familiar staff to an entirely new team. The most significant hurdle came at the end of her hospitalization, the intimidating awareness of discharge. I thought this would never come, and as we worked toward going home, I became powerless under the notion of having to care for my baby, who now has new and unfamiliar needs, without constant medical care.

The initial discussions of Arya’s case focused on survival with the themes of mortality, neurologic devastation should she survive, pain, ethically futile life support, and the impact on her family because of prolongation of care. However, as her survival became apparent with serial neurologic examinations, our discussions transitioned to quality of life, patterns of atypical neurodevelopment, and her probable neurologic deficits.

We were constantly challenged by highly treatment-resistant clinical seizures with findings of blindness and bilateral hearing loss. The family consistently expressed a desire to understand medically the process of her ever-changing clinical status and what these changes might suggest for her future development. Through these obstacles, we made every effort to advise with honesty, clarity, sensitivity, and in the context of the wishes of the family, to promote a therapeutic alliance based on trust, even in the face of unknown results. The struggle lies in communicating this unknown, while recognizing I must contribute to developing treatment plans, long-term care, and, above all, hope. Despite this heavy role, the family allowed me to be a participant in Arya’s journey that began with uncertainty about her very survival, to quality of life and limitations of autonomy, and finally toward reaching a state in which Arya would have maximum functional control over her disease-imposed limitations.

By the time I was assigned her case on transfer to the general inpatient ward, I had heard of Arya’s story and the family became aware that I was a trainee. To say it was intimidating to begin working with Arya after a near-death experience, and now from their established PICU and multidisciplinary team, is an understatement. I was a physician imposter, a doctor in training…an intern. What was worse, I knew I could not provide them with the answer to the questions they craved, fueling me with nervousness, frustration, and yet motivation. Therefore, I focused on what I could give them: close coordination of care with daily assessment and updates from multidisciplinary discussions. When our team did not have the answer, I could explain why we did not, what the steps were to find that answer, and what the process toward achieving it may be. I could be at the bedside when needed, I could discuss the emotional impact of this situation, and I could spend time trying to understand the fears and confirmations of the family.

I recognized weeks before discharge the parents’ very real fear of going home. We all understood the reality that they would be going home with a different child for whom they each must reach beyond parenthood to become Arya’s medical support team, triage nurses, multidimensional therapists, nutritionists, and advocates. By the end of her course, Arya’s mother had done something I could not have predicted, she asked me to be Arya’s primary pediatrician. I believe the greatest strength in the physician-family relationship was the unique gift the parents provided me: the opportunity to admit the most difficult phrase, “I don’t know.”

The most valuable part of Arya’s 2-month hospitalization and extensive follow-up care was constant transparency, a delicately balanced process within medicine. Arya has first taught me to step out of my comfort zone and admit areas of strength and weakness in medical knowledge for the betterment of building relationships with families. Second, I witnessed the value of having conversations beyond the medicine: the family would have to face including financial plans, caretaking strategies, and adjustments to living accommodations.

The family later relayed that they chose me as their pediatrician based on 1 aspect: trust. Arya’s mother knew there would be open communication and constant commitment to her daughter. Last, she knew I would include the weight of their experience, with their hopes and fears for a future, when making decisions on medical care.

Arya’s story can be summed as the transitional process toward a final neurologic diagnosis of cerebral palsy. She would be classified as having spastic quadriplegia of total body, suggesting severe disability even with technologic support.⁶  I want to emphasize the concept that Arya is a person with a unique lived experience, who transcends her diagnosis or classification. She is, like us all, trying to navigate the world through her own lens. This perspective should be applied to all children with or without cerebral palsy: identifying them as each having their own lived experience through their unique abilities to govern and adapt their bodies. My purpose for participating in this article is to admit the shared experience of the unknown, while advocating for Arya and others with her diagnosis. I want to continue to learn from her, her exclusive style of communication and relatedness, her motor and cognitive adjustments, and admire her delight in our shared living experience. The surprise and pleasure on her face with her first taste of ice cream, the way she self-soothes by twirling her hair and sucking her thumb are identical to that of my daughters’ 40 years ago. These subtle mutual experiences make me grateful for the commonalities that are shared by neurotypical and atypical individuals and inform the sentiment that what we share is as valid as what distinguishes us as individuals.

Continuity of care after discharge was essential for my comfort in going home and my confidence in Arya’s future. Despite knowing the resident physician’s medical training level, we did not hesitate to continue to collaborate with her because we knew our voices would be heard, with her commitment to initiating this manuscript only months after discharge. We were excited to watch her career grow as Arya grows.

I could tell there was hesitancy to formally label Arya with cerebral palsy. I understood why because this diagnosis comes with a stigma. However, I personally felt relief because it provided Arya with an ability to receive a variety of therapies and broadened access to care. I have been able to create a medical family, meet others with a shared cerebral palsy diagnosis, and save my daughter’s life. I realize this is a unique opportunity, but encourage families to seek out providers who are more interested in sharing their flaws, rather than having every discernable answer. Arya is not a cerebral palsy patient, but a daily inspiration who continues to prove miracles as she finds her way in life.

Uncertainty is inherent in the practice of medicine, and this case illustrates our need to create an environment for our families and ourselves in which we can accept and address our gaps in knowledge. It highlights Arya’s exhaustive yet incredible journey and unrelenting dedication by the family who has faced a spectrum of emotions. We must continue to promote this environment while learning from our complex patients so they may teach us about our world. Most importantly, we must approach uncertainty in medicine with the same tenacity and endurance demonstrated by Arya.

PICU

pediatric ICU