The room was eerily calm. No beeping. No vent in place. All tubes and IVs had been taken out. There was an arrant difference between the now pacific atmosphere in the room and the typical ICU room. The mother cradled him in her arms, while dad, uncles, aunts, grandparents, and the younger sister gathered around the ICU bed.
The machines were turned off and the only noise present was that of the soft strumming of a guitar, which was being played by one of the uncles. As the melody of “Take Me Home, Country Roads” unfolded, the whole room softly started to celebrate this wonderful kid’s life with incredible dignity and honor. Smiles were on their faces and tears in their eyes as they sang, “…country roads, take me home to the place, where I belong.” The pain in their eyes, the love in their hearts, and the strength in their hugs and kisses were palpable. To say that I learned what true compassion and unconditional love was that day is a major understatement.
I was able to meet this amazing little, big fighter towards the end of his life. However, I never truly had the chance to know him as the kid he used to be. I only knew him as the kid that he was. This version of him had EEG lead stickers taped to his head, IVs coming out of his arms, and a tube down his throat to help him breathe. This version of him had a brain that was shutting down secondary to the havoc that an extremely rare genetic disorder was causing.
I had the honor to appreciate what his life meant to his family. Through their stories, it became evident that this child was full of life. He was a prankster, singer, somewhat terrible (but adorable) dancer, and the perfect older brother. His existence embodied the concept of untainted love and resilience!
Throughout the disease process, the palliative care team was closely involved with the family. For the first few years of his life, the team’s goal was to coordinate care amongst a myriad of specialists. The team also served as a sounding board that the parents and patient could use to meet their care goals, bring up sensitive topics that could and would come up in the future, and to create plausible plans.
Once it became clear that the disease was progressing fast, the family made the loving decision to move towards comfort care. Then, the responsibility of the team morphed into that of hospice care. Under the umbrella of hospice, the team played a multi-dimensional role. The main purpose of the team was to ensure that the family’s goal and wishes for what they thought was best for their son were met and to ensure that the patient was not suffering. The team served as an unbiased companion to the family and helped them comprehend the process of losing a child by willingly serving as a support system for the parents.
The team also provided the family with a child life specialist that worked with the sibling to help explain what was happening to her brother. They linked the parents up with a chaplain as well that provided support for any spiritual needs that the family had and a social worker helped arrange for the funeral. The team also provided the parents with an art therapist and a volunteer from the therapeutic recreation team. Together these two specialists helped the family create books, keepsakes, music, and other memorabilia that honored their son. The team served as the glue that provided the family with the support that they needed. Through the interaction with the family and the hospice team, it became evident to me that this care team played an essential role in making sure that this child lived and died with the utmost dignity and respect.
Death is an unfortunate reality that is inevitable. It was often ignored because of the repercussions it had on the family and the patient. This is why the palliative/hospice care team was so crucial. This team was there to broach the sensitive topic of death. It was there to make sure that death was awarded the same care and respect that life was given. Not only was this notion honoring the patient, but also it was there to comfort the family,
In the last moments of his life, the aforementioned patient’s family found solace in the fact that their son had been peacefully honored not only in his life, but also in the process of his dying. And in that moment in the PICU, where “Take Me Home, Country Roads” played softly in the background, I learned what it meant to die with magnificence and dignity, and learned the meaning of unconditional, irrevocable love.
To be continued…Until then, let’s honor this child with the following words:
“I hear her voice in the morning hour, she calls me, the radio reminds me of my home far away. Driving down the road I get a feeling that I should have been home yesterday, yesterday. Country roads, take me home, to the place I belong.” —Take Me Home, Country Roads by John Denver