Abstract
I
My identity as a pediatric palliative care clinician continues to evolve with each encounter as I develop my own style, language, and identity. Each day I meet new families, bear witness to their stories, form assessments about their coping, and formulate intervention plans and recommendations based on my clinical judgment and formal education.
A few months into the second year in my job, my family tested my skillset. It was a sunny Saturday morning in October when my eldest brother called to tell me that his mother, my step-mother, was in the hospital on life support. She had been battling mental health issues for many years and had overdosed.
I entered her intensive care unit room alone and surveyed the equipment that had become such a normal part of my daily routine, only now I felt like I was in an alternate universe. I gathered her hand in mine and gasped for air as I noticed her necrotic finger tips. My knees buckled as my brain tried to process the stimuli. The monitors, medication infusions, ventilator, and continuous dialysis machine were familiar to me, only now they were connected to the mother of my brothers and the woman who taught me how to put on mascara and cheered down the sidelines during my soccer games.
Tears dripped down my face as I sobbed. My eldest brother entered the room; my feelings and needs became irrelevant. Tell him the truth, I thought. He needs to know. The words escaped from my mouth before I could formulate my message with sensitivity.
“She's going to die!” I blurted.
“How do you know?!” he demanded.
“Her fingers,” I mustered, weeping. In that moment, I wished I didn't know as much as I did.
After a few minutes, I collected myself and the palliative care social worker part of my brain kicked in. Only now, I was the most medically knowledgeable person on my “team” of family members. I went into high gear, first asking to speak with the Intensive Care Unit (ICU) attending and then requesting a family meeting. I sent my middle brother to pick up my youngest brother from home. A pit developed in my stomach as I realized that that meant I would have to tell my baby brother that his mother was dying. I called my cousin, a rabbinical student, and asked her to come as soon as she could.
My youngest brother and I are 11 years apart. The large role I played in raising him inspired my deep love for children and strongly influenced my career path. When he arrived at the hospital, we sat down in a small consult room. Hundreds of thoughts fired in my brain as I stared at his teenaged face. My clinical brain told me to speak honestly. My big sister brain told me to hug him and tell him everything was going to be okay.
This is what parents must feel like, I thought.
How could I look into the eyes of the child who I love the most in this world and tell him that his 49-year-old mother was dying? It was incomprehensible. At some point, my mouth began to spew words while my mind went blank.
“Her doctors are worried she's going to die,” I finished. He would later tell me that I seemed like a robot that day, that he wished I would have been my authentic self. He was worried that he'd hurt my feelings with his feedback; in reality, his words will forever influence my clinical practice. I recently shared with him that for the rest of my career, each time I look a child in the eye and prepare to communicate bad news, I will remember the hesitation and the heart-break I experienced when it was my own loved one staring back at me.
My eldest brother was technically her healthcare proxy, but each time the medical team asked him a question, he glanced at me and said, “Whatever you think, I trust you.” His pain and guilt were palpable, unbearable. This is not your fault, I thought, knowing I would spend the rest of our lives trying to convince him of that.
My family looked to me with trusting eyes as I asked the ICU team questions about liver and kidney function trends, ventilator settings, respiration efforts, sedation, and whether an electroencephalogram (EEG) could be ordered. While we anxiously awaited brain activity results, I yelled in her face, shook her, and pinched her. No response, I noted, in my nonmedical, nonofficial record. No response.
After their evaluation, the medical team explained that it would no longer be medically indicated to resuscitate her should her heart stop. I felt a sense of relief wash over me, engulfing my body. I nodded in agreement to their recommendation. One less thing to worry about. One less decision. There are no decisions, she's dying my clinician brain shot back.
I checked her finger tips and toes regularly and watched as the necrosis worsened, claiming her tongue, chin, and earlobes. I noticed her fading penciled eyebrows and faintly blued eye shadow and wondered what thoughts must have crossed her mind as she applied her makeup that morning. Had she beautified herself for our benefit?
I checked in with palliative care colleagues regularly to ensure that my instincts were correct and to garner my own support. The family went home that night. After learning that her organ function had plummeted overnight, we elected to discontinue life-sustaining treatments and to allow her body to die naturally in a peaceful environment.
She took 90 minutes to die. I continue to be in awe at what happened in her small ICU room during those 90 minutes. It was an intimate, beautifully choreographed dance between my siblings and me where no one was ever alone. My brothers begged her to live and then laughed at how her stubborn spirit persevered until her final breath. Turn off the monitor! My clinical brain yelled, and yet I could not pull my own eyes from the screen. My brothers asked why she was “fighting so hard”; I told them that this was the body's natural way of shutting down. The monitor blared, reading asystole six separate times before her cardiac muscles finally stopped contracting.
It was only 24 hours from the time that I learned of her overdose until the moment of her death. Twenty-four hours that felt like a lifetime. Twenty-four hours of battles between my clinical brain and my big sister brain. Twenty-four hours on the other side of the fence. Things are harder on this side of the fence—my big sister brain is controlled by emotion, lacks logic. I realized weeks later that my step-daughter brain had not been present for that tragic weekend, as my relationship with my step-mother had been complicated and I'd subconsciously known that my feelings would cloud whatever clinical judgment I could muster. This was the boundary I needed to create to protect myself; my own grief experience would be tucked away and processed later.
My family's journey with my step-mother and my role within my family continue to evolve as the six-month anniversary of her death approaches. Through both my personal and professional lenses, I learn more each day as I navigate my own grief journey, as well as my brothers'. I've digested that despite my training and professional experiences, I am not immune to the pain of losing a loved one.
Yet when my brothers ask questions about our childhood and their mother, it's an opportunity to honor her legacy and strengthen my bond with siblings. I have accepted that there will continue to be days where the blaring alarms of my patients' cardiac monitors trigger me back to those moments where we begged her to let go—that these incidents are not signs of weakness, but are instead proof that I am profoundly human. In spite of valiant boundary setting efforts, life's trials resulted in an intricate web consisting of complex personal family dynamics tangled with clinical encounters.
Did we make the right choice? I wondered until the end. In reality, there was no choice, and I knew that.
Did I serve my family well? Did I overstep my bounds? Could I have done better? My big sister brain continues to wonder.
There's no right or wrong, only actions from the heart and our best decisions made with the information at hand, my clinician brain offers soothingly.