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 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

brain injury due to lack of oxygen. Her parents knew that her future had been taken, and that she herself would never have wanted to live like this, and so, lovingly, and courageously, they decided to allow her to die. Her parents wanted to bring her home for her death; they knew she would want to be in her bed, surrounded by her loved ones. And so, accompanied by our music therapist, we moved her from the hospital room, still ventilated with a breathing tube, to the ambulance. We played her favorite music, we talked about her, and we talked to her on the long ride home. When we arrived at her home, the community was there to greet her. A choir serenaded her as we laid her in her bed, by the window showcasing the bubble machine and the pinwheels decorating the lawn that had been placed by the neighborhood the night before. Her parents climbed into bed with her. We removed the breathing tube, and she took her last breath.

For me, this work is why I went into medicine. In palliative care and hospice medicine, we serve our patients and communities. We can ignore (mostly) the pressures of the system to make money. We can fight inequities and uphold social justice. We are honored with meaningful connections and encounters always. We certainly face frustrations, sadness, and dismay, but we acknowledge and celebrate the need to care for ourselves and for each other. This work allows to remember our humanity and uphold the humanism of us all. And this is what we need to bring back to the rest of medicine. In this work lies the crux of meaning in medicine. In this we can thrive. Without this humanity, this humanism, we simply cannot continue. Efrat Lelkes is a pediatric critical care and palliative care physician who is interested in fostering an increased understanding and integration of bioethics in pediatrics to ameliorate moral distress and enhance meaning in medicine for providers. After completion of medical school at the University of Wisconsin School of Medicine and Public Health and pediatric residency at the University of Chicago, she completed her Pediatric Critical Care Medicine fellowship at the University of California San Francisco, Palliative Medicine and Hospice fellowship at the University of Washington, and Pediatric Bioethics training through Mercy Children's Hospital. Dr. Lelkes is an Associate Professor in the Department of Pediatrics at UCSF, Pediatric GME Director of Wellbeing and Pediatric Medical Co-Director at By the Bay Health. Through bioethics, multidisciplinary education, and narrative medicine, she aims to strengthen our ability to provide excellent care, advance pediatric medicine, care for the sickest of children and for each other.

References

1. National Academies of Sciences, Engineering, and Medicine 2019. Taking Action Against Clinician Burnout: A

Systems Approach to Professional Well-Being. Washington, DC: The National Academies Press. https://doi. org/10.17226/25521. 2. West CP, Dyrbye LN, Shanafelt TD. Physician burnout: contributors, consequences and solutions. J Intern Med. 2018

Jun;283(6):516-529. doi: 10.1111/joim.12752.

VitalTalk Bay Area Hub

Creating Community and A Shared Language for our Clinicians

A fundamental part of my palliative care training has been honing communication skills. I have learned, practiced, and taught with the support of VitalTalk, a non-profit whose vision is that every seriously ill patient will be surrounded by clinicians who can speak about what matters most and match care to values. VitalTalk is the premier training organization for clinicians seeking to advance their communication skills. Just as no doctor is born knowing how to handle a scalpel, the same is true for how to communicate effectively with seriously ill patients and their families.

We have been fortunate locally to have established a Bay Area Hub over the last four years, thanks to generous funding from the Stupski Foundation. During that time, led by Wendy Anderson, MD, now Director of Palliative Care Expansion at Alameda Health System, the Bay Area Hub faculty community has grown to include more than 70 faculty who work across the major Bay Area health care systems: Kaiser, UCSF, Stanford, Sutter, the San Francisco VA, Alameda Health System, Contra County Medical Center, Zuckerberg San Francisco General, and Santa Clara Valley Medical Center, as well as local hospices and community organizations. In turn, these faculty have taught an astonishing > 900 Bay Area clinician learners at half and full day courses, through VitalTalk and through courses they teach at their home institutions. Clinicians leave these courses feeling more confident in their ability to deliver serious news and discuss goals of care.

Beyond skill acquisition, the Bay Area Hub has also fostered the growth of our local palliative care community. We have gathered together for meals and meetings, and though lately haven’t been able to meet in person, still collaborate to teach together online across our various health systems. In the same way SFMMS fosters community between physicians across Marin and San Francisco, the Bay Area Hub has brought us together in the palliative care realm. It is these connections which helped create this robust palliative care journal issue, and continues to create a shared language that fosters quality palliative care in our communities. Thank you Dr. Wendy Anderson and to all of our VitalTalk Bay Area faculty and learners!

Learn more at VitalTalk.org. The site hosts easy to digest online videos, an app, self paced courses, and facilitated virtual courses that let you dive deep into your communication practice!