Laura Taylor

Background Palliative care (PC) provides numerous benefits for children with cancer. Pediatric patients with high‐grade glioma (HGG) are particularly well suited for early PC involvement given their high symptom burden and poor prognosis. However, studies continue to reveal that children with cancer, including HGG, have delayed PC involvement. We hypothesized that clinical trial enrollment may lead to a lack of or delay in PC involvement in this population. Procedure For each patient in our cohort of 43 pediatric patients with HGG, demographic, diagnostic, therapeutic, clinical trial enrollment, and PC information were collected. Statistical analysis was performed comparing PC characteristics between patients who did and did not enroll in a clinical trial. Results Seventy‐two percent of patients had at least one visit with a PC provider. Fifty‐six percent of patients enrolled in a clinical trial with HGG‐directed therapy. Seventy‐one percent of patients who enrolled in a clinical trial received specialty PC compared to 74% of non‐trial participants ( p = 1.000). Patients who enrolled in clinical trials received PC earlier in their disease course measured in days before death (mean = 177 days) compared to those who did not enroll (mean = 113 days, p = .180), though not statistically significant. Conclusions The prevalence of clinical trial enrollment is high in patients with HGG and will likely increase as the genomic/epigenomic landscape of these tumors is better understood. As such, our data reassuringly suggest that trial participation does not interfere with the receipt of specialty PC in this population.

Palliative care clinicians regularly care for patients with serious illnesses, many of whom are engaging in the use of complementary and alternative medicine (CAM) either alone or along with conventional medical therapies. A subset of these patients may be engaging in therapies that have little or no evidence for efficacy and carry significant potential risks to their health. These therapies, however, may carry a great deal of significance for the patient and family for whom conventional medicine has failed or is otherwise deemed untenable. Dismissing such therapies as “quackery” risks alienating patients and damaging or even severing a therapeutic relationship. When faced with patients who are engaging in potentially unsafe low-evidence therapies (PULETs), clinicians themselves may experience a great deal of moral distress when deciding how to balance supporting the hope PULETs may represent with the principles of nonmaleficence and autonomy. In this article, we will review the definition of PULETs and distinguish them from most CAM therapies. Drawing upon existing writings in the CAM literature, we will then review a framework to evaluate the relative risk/benefit ratio of such therapies followed by a review of the ethical and legal aspects of care. Finally, utilizing existing principles and tools in emotion-based communication, we present a communication approach to foster continued collaboration and care for patients who engage in PULETs.