Special Section: Palliative Care
PEDIATRIC PALLIATIVE CARE AND THE CURE FOR MEDICINE Efrat Lelkes, MD Pediatric palliative and hospice medicine is not a field I was aware of, nor would have been interested in, as I started my medical career. As a new doctor, I thought I knew what it meant to be a physician. I wanted to fix things, to save children, to be a hero. As I have grown in this work, my views have shifted and expanded. I now view my role as a healer—I have learned that I am here to serve, not to fix. Pediatric palliative medicine has taught me this. And now, at point of crisis within the American medical system, my hope is that the field of pediatric palliative medicine can teach us all. Medicine within the United States is a field that has been slowly pushed away from its core. With the increased commodification of medicine, with the inculcation of capitalism and consumerism into the care of others, it is easy to lose our purpose. I hear constantly from medical students, trainees and colleagues that are struggling to remember why they entered the field of medicine. Though we want to do good, to make a difference in our patients’ lives, to improve the world around us, we feel unable to do so because of the constraints of the system. We are largely burned out; rates even before the COVID-19 pandemic were soaring throughout medicine.1 This has only worsened. Reasons for this are multifold, and stem from organizational and systemic strains and deficits.2 Resultantly we are emotionally exhausted, we are cynical, we feel encumbered by a system that is squeezing us and our patients simultaneously. And yet, in the morass of struggles, I find joy and purpose in my work, gifted to me by pediatric palliative care. Through this work, I help care for children with life-threatening and life-limiting illness. We aim not to usurp the work of the primary teams, but to add an extra layer of support. For each child and each family, this is nuanced and unique, and yet, for each child and family, we get to be by their sides with compassion and love. Through this work, we are invited to share in the intimate moments of a family’s life. We are allowed to hold the suffering and bear witness to the uncertainties that exist for our children and their families. And though others at times balk at this work, declaring to me their aversion to caring for such sick children and for dying children, I hold gratitude for the beauty of our work. In pediatric palliative and hospice medicine, we do care for children at the end of life. These deaths are often sudden and 8
always hard, though we have anticipated them. We have patients who are on our service for just a few days or even less— the children with perinatal diagnoses or rapidly advancing disease whose parents choose to bring them to die at home with home hospice, or the children in the hospital with sudden tragedies whose families may benefit from our care and support. Yet we also care for children and families that we get to know over years, some that we even graduate from hospice or palliative care. Unlike in adult palliative medicine, our children are offered the grace of concurrent care, allowing us to support them throughout the deep unknown of what will happen. In pediatrics, so much is uncertain—rare diagnoses, significant brain injury in young children who have neurologic plasticity, and rapidly emerging new therapies. For some of our families, this uncertainty is welcome; to not know when or if their child will die is a relief. For others, this uncertainty is destructive. For most, it is both. Our job in pediatric palliative medicine is to help families through it all. We hold the heartbreak and the worries, and we celebrate the triumphs. In this work, especially though home-based pediatric palliative and hospice care, our aim is to do what is needed and what is right. From symptom management to conversations with patients and their families; from continuing to hope for life-prolongation or cure to death and bereavement, our work feels pure. We function outside of the pre-defined box of standard contemporary medicine and focus on the good of medicine. Our work is relationship-centered and healing, both for our patients and for us. This is a field that, at its best, is truly transdisciplinary. Working side by side, our team of social workers, chaplains, expressive art therapists, massage therapists, acupuncturists, child life specialists, nurses, nurse practitioners, and physicians learn from each other and care as a team, without hierarchy, without ego, to improve the lives of others. Here is a field that elevates our beliefs and reinforces our dignity, our integrity, our equanimity, our veracity, our compassion. I think often of the first patient that taught me the beauty of this work. A young girl with a debilitating disease, she lived a joyous life, filled with smiles and dancing. She knew deeply the love of her parents and her community. Late one evening, she stopped breathing. By the time she arrived in our pediatric critical care unit, she had suffered significant and irreversible
SAN FRANCISCO MARIN MEDICINE OCTOBER/NOVEMBER/DECEMBER 2021
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