The Case of Billy Best: 25 Years Later

Abstract

Billy Best was diagnosed with Hodgkin lymphoma in 1994 at age 16 and became well-known when he ran away from home to avoid receiving further chemotherapy. His story became national news when, with the support of his adopted parents, he returned home and opted to use complementary and alternative medicine (CAM) instead of standard chemotherapy and radiation for his cancer treatment. Now 25 years since Billy Best entered the public eye, his story is one that is frequently referenced in pediatrics, bioethics, and other related fields. Here, the authors examine the evolution of various features of this case, including treatment of Hodgkin lymphoma, the interplay between medicine and the media, the role of CAM in pediatric care, navigating entrenched disagreements and how best to integrate adolescents into health care decision-making, and the role of narrative in medical practice. The authors explore the unique role of each of these facets of Billy Best’s case, describing how each has or has not changed in the quarter century since that time amid the changing landscape of pediatric health care. Ultimately, although many advances have occurred since Billy Best’s time, significant work remains. Additional effort will be required in the future to optimize communication, improve treatment toxicities from Hodgkin lymphoma without decreasing survival, integrate the voice and perspective of adolescents into their treatment decisions, and navigate the roles of CAM and the media in pediatric health care.

The role of ethicists in pediatric hematology/oncology: Current status and future needs

“…As noted, the bulk of ethics scholarship and research within PHO has focused on oncology‐related topics with less attention to hematology. Existing areas of scholarly emphasis include assent and informed parental permission (consent), 33–37 early‐phase oncology trials, 38–41 genomics, 42–47 communication, 48,49 chemotherapy shortages, 50–53 and refusal of recommended oncology treatment 54–58 . At present, ethics literature germane to pediatric hematologic disorders has primarily examined newborn screening, 59 preimplantation genetic testing, 60–63 genetic counseling, 64,65 and reproductive decision‐making 66–68 for genetic diseases like thalassemia, SCD, and glucose‐6‐phosphate dehydrogenase deficiency.…”

“…Existing areas of scholarly emphasis include assent and informed parental permission (consent), [33][34][35][36][37] early-phase oncology trials, [38][39][40][41] genomics, [42][43][44][45][46][47] communication, 48,49 chemotherapy shortages, [50][51][52][53] and refusal of recommended oncology treatment. [54][55][56][57][58] At present, ethics literature germane to pediatric hematologic disorders has primarily examined newborn screening, 59 preimplantation genetic testing, [60][61][62][63] genetic counseling, 64,65 and reproductive decision-making [66][67][68] for genetic diseases like thalassemia, SCD, and glucose-6-phosphate dehydrogenase deficiency. Recent years have seen an expanding focus on ethical issues related to genetic/genomic sequencing in hematologic disorders, 69,70 and on gene editing, 71 particularly related to SCD.…”