“If you don’t let us go home because of the vomiting, his time is running out … I don’t want him to be at a point where there is nothing else to do, and I don’t want him to go home at that point,” said J’s mom.
“Am I crazy to want to see this naturopathic doctor? He promised us he would cure our son of his cancer …”
“It is not crazy to want to do everything for him. It is your love for your son,” said the doctor.
Conversations are at the heart of pediatric palliative care. Willing to be part of the hardest conversations with parents and their children is something only the most empathetic can do. And it is, at times, heart-wrenching. Unforgettable.
I have always been someone who listens more than he speaks. “He’s a good listener,” I’ve been told. But, it’s not just listening, but it is also being present. Being that person who can place themself in the parents’ shoes to grasp the pain and suffering. To be the light when everywhere else is darkness.
Every conversation these past two weeks reminded me of my dad’s journey after his strokes. When my dad was put on a vent, everything spiraled out of control. Recurrent cases of pneumonia became the new norm that later led to several complications.
On day seven after the strokes, I was sitting with my dad when his attending came by for morning rounds. He gently pulled me aside, us standing in front of the residents and nurses, who then told me in a low voice there were two options – either to continue with the current plan or to consider letting my dad go. To allow him to pass peacefully with pain medications.
I immediately collapsed to the floor crying as my world fell apart. I ran up to my dad’s side and told him I have to go home to mom and that I was sorry to leave so soon. No empathy by any member of his team; I don’t even know how I made it home. My dad didn’t have a DNR/DNI, and my mom and I struggled to find out what my dad would want for himself. After hours of talking, we decided we must give him a chance at life.
I never forgave my attending, and honestly don’t even know if I would ever mention what happened that day to him. I saw the harsh reality that doctors have much to learn about how to talk with family. And even worse, their understanding of palliative care is poor.
Today, my practice of medicine focuses on a patient’s quality of life and that there is life to be lived after illness and injury. Yet, the patients I care for sometimes are followed by palliative care because some conditions are so severe that the only options left are sometimes pain management and comfort care. It becomes an orchestra of medicine and humanity where goals of care are paramount. Palliative care is truly an interdisciplinary team effort to find out the answer to this singular question, “What would patients want for themselves?”
What is next for the patient? Is it going home to spend the time they have left with the ones that love them? Is it time to withdraw life-sustaining treatment because the pain and suffering have continued long enough? Or is it being a support system for the family that is caring for their child with a new cancer diagnosis?
What I would tell my future self is that regardless of how little time you may feel when it comes to seeing your patients, take the time to talk with each of them. Listen to their stories. Learn what gives their lives meaning. And look for any signs of pain and suffering that can be shrouded.
The most important quality of a good doctor is empathy. I will forever remember that.
The author is an anonymous medical student.
Image credit: Shutterstock.com
