Abstract
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“Also,” continued the oncologist, “it seems that his tumor is much more aggressive than we initially thought and it does not seem to be responding to treatment. We have another experimental medication we can try, but I am not sure how much it will help, if at all…”
For the first time in 55 minutes, I turned away from Mr. Magana, toward the other 15 interdisciplinary providers present for the meeting to notice that there was not a dry eye in the room. Despite his silence, Mr. Magana's pain was palpable and harrowing.
He's going to lose his son too, we thought in unison.
Mrs. Magana, Oscar's mother, had died in March, just weeks after a metastatic cancer diagnosis. Oscar's parents were high school sweethearts.
Oscar was diagnosed with a brain tumor in May. His tumor was originally thought to have been a low-grade glioma. It was now October and four-year-old Oscar, who was supposed to be starting school, had recently presented with paralysis, respiratory decompensation and loss of consciousness as a result of posterior reversible encephalopathy syndrome and tumor progression.
“Melón melón melón!” Oscar's voice rang in my ears as I remembered a previous hospitalization and his elation in being able to eat again after his emergent tracheostomy placement. I pictured the photographs from his family's most recent trip to the Pacific Northwest, Oscar wrapped in his spider man cape, elated and blissful. I recalled Oscar's last clinic visit, when he declared that they would be going back up north soon so that he could camp and learn to fish. His father surveyed our team as his son indulged in reverie about escaping his ailing body.
“Anything else?” Mr. Magana's monotone voice probed, shaking me back into the dim sorrowful room. The providers awkwardly glanced at each other, itching to conclude the meeting, but acutely aware that there was no escape route for this father.
“We're so sorry” fumbled the pulmonologist as we all nodded in unison. One by one the providers departed until just Mr. Magana and I remained.
He bowed his head and stared at the ground. After several moments, he turned to me and began, “This is the worst day of my life. And you are choosing to be here with me. You chose this job. To sit here in this terrible windowless room with parents on the worst days of their lives. Why would you do that to yourself?”
Numerous rehearsed phrases ran through my mind at once. “I am so sorry, Mr. Magana” was all I could muster in response. “Would you like me to sit with you, or would you like a few minutes to process everything?” I asked.
“Do you think you can do this job because of who you are as a person or because of your training?…I just don't know how you do it?” he implored.
I do not remember how I answered Mr. Magana's question that day because I was so stunned by the fact that he was considering my needs given the information he had just received. I also simply did not have an answer. At that time, I knew that I chose to pursue a career in palliative care because I believed that it was a privilege to sit with suffering and to bear witness the most beautiful parts of humanity. I knew that I fundamentally believed in optimizing quality of life in the face of serious illness and in supporting families in some small way in hopes of making an unthinkable circumstance even the slightest bit better. However, I had never before considered which individual attributes or experiences influenced one's vocational journey toward my field.
This conversation happened more than three years ago and yet, Mr. Magana's question lingers in my thoughts, taunting me often. Why do some people choose to sit with such profound suffering day in and day out? Is it some form of fate or destiny? Are there people who are “meant” to be palliative care providers?
As Oscar's disease continued to progress over the coming months, so too did his feisty spirit as he survived through Halloween and his sister's first birthday, Thanksgiving with his family, and a peaceful Christmas in the most beautifully decorated hospital room I had ever seen. All the while, his father remained by his side, noticing his every symptom, vital sign variation, and physiologic change. Despite his profound unfathomable grief, Mr. Magana continued to parent Oscar through his evolving needs. He guided his son through every visitor, procedure, and alarm in his most soothing voice. His love and advocacy were steadfast as he ensured that each day that Oscar lived was as good as it could be. Witnessing this devotion and unconditional love, I realized, is why I can do this work.
Since that encounter in that windowless room, I have garnered an understanding that the hospice and palliative care community is bonded in our awe of the strength of human beings in the face of unthinkable tribulation. Our shared understanding of the fragility of life and our unspoken commitment to relationships, positivity, and basic humanity offer a level of humility and gratitude that no textbook or formal instruction could adequately reveal. The strength of our community nurtures during moments of vulnerability and propels innovation toward optimal patient care in the face of serious illness.
Upon further reflection, I am profoundly grateful to Oscar for the privilege of experiencing his effervescent spirit and magnanimous heart and to his father for challenging me to step back and consider the role that I play and what inspires me to do this work each day. His question was a gift that I now understand will continue to unveil itself, challenging me to practice with intention and purpose during moments of both the most intimate devotion and the most profound anguish.