March 23, 2017

Caring for sick kids: Then and Now

Caring for sick kids: Then and Now

During my second year of medical school, I went through the most emotionally intense period of my life as I grew close to an affectionate 8-year-old kid with a very poor prognosis. Two years later, I went through a similar experience as I became close to the family of a previously healthy 10-year-old with uncertain future. Both situations were similar, but I handled the second one much differently than the first. Reflecting on this difference not only helped me appreciate my growth, but also offered a lens into resiliency and burnout, two issues I had heard plenty about but never seen close up.

Then

I walked into the room and was greeted by a wide-eyed 8-year-old with scattered freckles and a broad smile. He also had aplastic anemia and was hospitalized with an infection. Though gravely ill, A acted like a typical kid and we became close. He confided in me about his latest crush (“Don’t tell mom, it’s a boy secret!”), his backyard soccer career, and his love of video games. A week into A’s stay, however, we discovered that he had a fungal infection that was typically fatal. I was devastated by the news. After consulting with advisers, I spent the evening with him and his parents. Those few hours were among the most powerful of my life as I resolved to genuinely be there for a family I had only just met.

Though I shifted to other rotations, I continued to visit weekly during A’s three months in the BMT unit. He never lost his childhood spirit though his illness worsened. Both parents were always welcoming; his dad greeted me each time I visited with a hug. They confided in me the raw emotions felt watching their son fight for his life and the isolation felt in a large hospital without nearby family. I took pride in being a constant presence amid rotating teams and in being a sounding board for their thoughts and emotions.

This role wasn’t easy. Each day, I felt closer to a kid expected to pass. It was my first inpatient rotation with no prior reference. I could remind myself, with good reason, of the resiliency of kids, but I was also reminded each day by provider notes that few miracles could challenge his eventual decline. No note could stop me from convincing myself that my role was to help him make the most of whatever time he had left. A was an eight-year-old, doing and thinking about eight-year-old things – each day, he seemed to care most about beating me at Mario Kart. However, it was hard for me not to join his parents in thinking of the life he would never live. It took some time, but I eventually became comfortable being honest and vulnerable with my team, advisers, family, and friends. Even after opening up to them, I continued to “bring work home.” I became emotionally invested to the point my mood was determined by his clinical state. There were some weeks I had to step back to avoid burning out.

Miraculously, A survived to receive a bone marrow transplant, clear his infection, and return home. His parents gave me a photograph of him wearing a “Man of Steel” shirt and a note saying that I was part of their family forever. Two years later, we continue to be part of each other’s lives.

Now

B, a 10-year-old kid with a weeklong fever and worsening mental status, had made his way to the PICU. Starting the week with cold-like symptoms, he had suddenly worsened over the past 24 hours. He now had rising tachycardia and worsening hypertension. He came in lethargic and each hour was rapidly becoming less alert. I walked into his PICU room expecting to have a short conversation, but he was nonverbal, minimally responsive to pain, and had marked autonomic instability, soon to be intubated. His parents were sitting beside his bed in total shock.

I couldn’t help but think back to two years ago. It was timely; A’s mom had just invited me to his 10th birthday party. His story had been on my mind in the PICU, especially with my new patient, B. Both were previously healthy, playful boys in primes of childhood who had become suddenly, severely ill. Both had multiple subspecialty services crafting dynamic treatment plans. Both kids had uncertain prognoses. Both parents — warm, friendly, supportive — found ways to remain hopeful despite uncertain odds. Even their names were in order of experience: A first, B second.

During his first two weeks, B continued to be minimally responsive. The pediatric neurologists had ordered an extensive workup, but were empirically treating for autoimmune encephalitis. High-dose steroids were followed by IVIG and nuanced neurologic improvement was assessed for each day. His body required dynamic support. The ventilator kept him breathing. Powerful IV medications enforced order to his deregulated autonomics. Fluid and electrolyte statuses were actively corrected. Full feeds were given via his ND tube. Antipyretics and antibiotics were called upon a couple times to stave off ventilator-associated infections.

I would pop my head in every morning before rounds. His parents took turns staying by his bedside overnight. Both greeted me with steady handshakes and warm smiles. “How you doing this morning?” They would often ask me, in thick Southern accents, before I could ask the same about their son.

I would reciprocate.

“Oh, we’re all hanging in there,” they would say, in tones reflecting measured hope. “We’re praying he gets better, little bit each day. Everyone back home is praying for him.”

“How has B been since yesterday?”

Each day, they would point to something he had done differently. I took these seriously. Whether it was noting how his eyes move towards them as they called his name or played music for him, or noting him squeezing their hands a little bit harder, their findings were appreciated and often confirmed by the neurology team.

During the day, I would check-in on them several times, keeping them updated on new developments. They saw several different providers and appreciated someone coming in at day’s end to summarize the next steps. They asked great questions and unlike two years ago, I could answer most. They knew that progress would be slow, if at all, but remained hopeful.

We would always spend time talking about B. I wondered if it was difficult for them to be reminded of their son’s vitality as he lay unresponsive beside them, but they were always eager to share. They brought him to life. He was beloved by his community. He loved his high school- and college-aged brothers but fought back whenever given a hard time (i.e. often). “He’s a stubborn one, he is!” his dad would say. He loved country music and NASCAR and going out fly-fishing on the weekends. He was raised with strong Christian faith and brought up to maintain good manners. His father would smile when recounting one aspect of B’s first hour here, “Even when he was so loopy, he’d always say ‘sir’ when answering the doc.” Per Dad, he was your typical adventurous, fun-loving, Southern boy.

By the time I rotated off the PICU, B’s exam had only slightly improved and he was started on cycles of plasma exchange. His parents encouraged my habit of continuing to visit a couple times each week. “We want you to hear him talk!” After two weeks of being unresponsive, he finally started to come to life. He no longer needed the ventilator. He could freely move his eyes towards sounds. He started moving on command, then moving on his own accord. He could wave. Soon, he was on the floor. The day after his transfer, I stared in disbelief as he wrote his name on a piece of paper. We finally had our elusive first conversation.

Within a week, B was discharged to a rehabilitation facility. I made sure to see him before discharge. I gave him a Captain America stuffed toy so he’d always remember his superhuman strength. He taught me how the cool kids “high-five” nowadays. Two weeks after discharge, his mom sent pictures of him up and smiling, a video of him climbing up stairs, and a lovely thank you note I will continue to treasure.

***

Due to the similarity between A and B, I would often think to myself when with B: God, it’s going to happen again. You just watch. You’re going to get emotionally attached and get way off track like last time. These cases are your Achilles’ heel.

My fleeting mind wasn’t far off the mark — the hardest kids for me to take care of are the “previously healthy, now severely ill” ones. They have the greatest potential to send me into an emotional tailspin. During my time with B, however, the emotional hurricane that seemed to be brewing at a distance never made landfall. What changed? As I tried to figure out what change had taken place between my time with A and B, I landed upon a few words: presence, balance, knowledge, and perspective.

Presence. During my experience with A, I sought advice from a palliative care physician. He provided my guiding principle, “It’s the patient’s moment. Be present. They’ll tell you what they need.” At that time, I had interpreted “presence” to be physical presence. In B’s case, I found that reading too narrow. B’s parents were already overwhelmed each day by visitors; I didn’t want to add to that. I timed my visits carefully. I planned them, rehearsing how best to explain the treatment plan, printing out results to share, researching potential questions. I read their body language and tone to determine how short or long to stay with them. I always left time to talk about B if they found it helpful and reminded them he was in my thoughts and prayers. My most vital role was as a listener. Being present for B’s family was a far more active and engaged process than with A’s family. I was undoubtedly less physically present with them, but based on their feedback, my “presence” was felt. I loved my time playing with A and talking to his parents, but it would be remiss of me not to acknowledge the weariness and emotional complexity that came with it. The hours spent with them, observing the juxtaposition of playfulness and severe illness, created a ripe environment for emotional overinvestment. By broadening my definition of “presence,” I could show empathy and thoughtfulness while also serving as an advocate responsive to their needs.

Balance. With A and his family, I frequently had trouble “checking-out.” I thought about them while on the wards, while studying, while out with friends. I’d sometimes log in remotely to his chart to check his fever curve or read consult follow-ups. Whenever I tried to establish emotional distance, I felt selfish, as if choosing to ignore his plight. I felt guilty if, even after a tiring 16-hour day, I didn’t stop by to see him. If I stopped thinking about them, would I stop caring about them? Would they think I had stopped caring about him? Towards the end of their hospital journey, I realized the fallacy of my ways. Self-care is not selfish. In fact, it’s selfish to not come to work refreshed, ready to tackle every patient’s challenges. With B, I changed my approach. When on service, I strived to maintain focus, empathy, and thoughtfulness for all patients. When I walked out the hospital doors, I focused on the things that brought me fulfillment, be it writing, cooking, running, hanging with friends, or catching up on Netflix. I was never perfect. It’s nearly impossible to fully compartmentalize such an intense daily experience. I thought about B and his family a decent amount. That being said, realizing there is no dichotomy between investing emotionally and investing in self-care and removing any associated guilt helped me shift my behavior and perspective between A and B.

Knowledge. I was on my first inpatient rotation during A’s journey with limited clinical knowledge. Providing support was all I felt competent to do. For B, I knew more and could communicate with far greater clarity. But there were many unanswered questions. Curiosity became a useful avenue for my emotional energy. Following my advocacy-minded Med-Peds resident, I tried to go beyond passively reporting numbers or following published guidelines, striving to actively generate novel ideas. It was an additional avenue for me to show how much I cared about him getting better. It was challenging, sometimes burdensome, to possess insight into how the ride may end. But that knowledge helped me avoid being a belted-in passenger of an emotional rollercoaster, and allowed me to help his family understand the ride’s ups, downs, and potential paths.

Perspective. My experience with A triggered a fundamental epiphany about the care of sick kids. I noticed a unified passion from everyone, janitor to attending physician, to save each kid’s life. Some kids are dealt a poor hand. Fortunately, in many cases, pediatricians can leverage the natural resiliency of kids to improve or sustain life. Though it is devastating when conditions head south, the people I have been surrounded by — pediatrician, patient, and family — do everything in their power to make things better. In subsequent experience, this perspective has helped me focus on the positives. Measured hope despite clinical setbacks is reasonable. Miracles, like with A and B, do happen. Though we can never dictate the “ends,” we can control our approach to the “means.” We can derive satisfaction and pride from providing compassionate, wholesome care and advocacy, but at the same time maintain humility and understanding that we play a single role in a larger human drama, without a script in hand.

Other factors were in play, but changes in these four aspects — presence, balance, knowledge, and perspective — were especially helpful. Though I experienced the emotional whirlwinds that grasped me as I cared for severely ill kids, I discovered a central tendency to run towards, rather than away from, difficult conversations and an aptitude for helping guide patients through their most existential decisions and transitions. Connecting with the families of A and B has been among the greatest gifts of my life. I look forward to helping many more families along their journeys, and doing so with both empathy and balance.