Pediatric Palliative Care is a growing multidisciplinary field which aims to improve the whole person care provided to seriously ill children and their families from the time of diagnosis and throughout treatment. Practitioners focus on improving symptom management; patient and family resilience; and communication regarding diagnosis, prognosis, treatment options, and end of life care with an emphasis on shared decision making. The WHO and the American Academy of Pediatrics, along with many other guiding organizations, recommend palliative care to be incorporated into the care of seriously ill children 1,2, and over the past 2 decades, researchers have begun to evaluate how to best provide palliative care to these vulnerable children. The field largely originated out of the pediatric oncology field after the recognition that children, in fact, experienced pain, and that dying children suffered equally to adults3. However, in current practice a minority of pediatric patients with cancer are seen by a palliative care specialist.
Because access to providers with training in pediatric palliative care varies drastically across institutions, researchers have largely focused implementation of pediatric palliative care services in general without much attention given to disparities. Recently, however, some investigators have turned their attention to disparities in palliative care and specifically in children undergoing cancer therapy. Most of this work has been limited to first generation research to measure existing disparities4, and has been limited in its evaluation. One study by Johnston and colleagues found differences in intensity of end of life care (provision of CPR, intubation, mechanical ventilation) among children by race and socioeconomic status with non-white and low SES children receiving more intensive end of life care5. The authors remark that their work only identifies these differences and that more work is necessary to determine why these differences exist.
This is an exciting time in the field of palliative care research. Although advances in this field are overdue, we have an opportunity to direct the field in a direction that narrows health and health care disparities. I am particularly interested in palliative care integration with anti-cancer therapy in children and in communication improvement between patients, families and providers. Two frameworks from this class have impacted my thinking about my research: a more in dept understanding of the levels of racism as described by Dr. Camara Phyllis Jones, and the socioeconomic model. Another concept from the course that will be directive in my work is that in order to learn how different groups think about different issues, we have to go to them. Especially when addressing serious illness and end of life care, members of communities that have been mistreated by the healthcare system are all too aware of the historic and institutionalized racism in our systems. Without a similar awareness by providers and researchers, our ability to care for these patients needs will be limited and barriers to developing trust will persist. The onus is on us as researchers to go to people in their communities and learn about their perspectives and needs. With this knowledge, we can improve equity in pediatric palliative care and work to eliminate the health and health care disparities in the field.
WHO | WHO Definition of Palliative Care. WHO. n.d. URL: https://www.who.int/cancer/palliative/definition/en/ (Accessed 15 September 2019).
Care S on H and PM and C on H. Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations. Pediatrics 2013;132:966–72. https://ucsf.idm.oclc.org/login?url=https://doi.org/10.1542/peds.2013-2731.
Sisk BA, Feudtner C, Bluebond-Langner M, et al: Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children. Pediatrics 145:e20191741, 2020
Bona K, Wolfe J. Disparities in Pediatric Palliative Care: An Opportunity to Strive for Equity. Pediatrics. 2017;140(4):e20171662. doi:10.1542/peds.2017-1662
Johnston EE, Alvarez E, Saynina O, Sanders L, Bhatia S, Chamberlain LJ. Disparities in the Intensity of End-of-Life Care for Children With Cancer. Pediatrics. 2017;140(4):e20170671. doi:10.1542/peds.2017-0671
Jones CP: Levels of racism: a theoretic framework and a gardener’s tale. Am J Public Health 90:1212–1215, 2000