ETHOS: Ethics Training for Healthcare professionals in Oncofertility-related Specialties

New York University School Of Medicine, New York NY

Investigators

Linked publications, trials & patents

Abstract

The clinical domain of oncofertility has emerged at the intersection of cancer care and reproductive medicine. Guidelines from professional societies such as the American Society of Clinical Oncology (ASCO) and the American Society of Reproductive Medicine (ASRM) recommend that clinicians discuss cancer treatments’ potential effects on fertility and review available fertility preservation methods close to the time of diagnosis for patients of reproductive age with oncologic disease. These guidelines also highlight unique issues raised by patients with cancer in the adolescent and young adult (AYA) population, as discussions and decisions are complicated by these patients’ varying developmental maturity, their sometimes limited ability to consider long- term implications of family building choices, and input from or decision-making power of parents or guardians. However, clinicians are often not provided the training to identify and manage these and other challenges arising in this ethically, psychosocially, and emotionally fraught clinical realm. The parent grant, Enriching Communication skills for Health professionals in Oncofertility and Trainers in Oncofertility Reproductive Communication and Health (ECHO-TORCH), trains allied health professionals— nurses, social workers, psychologists, and physician assistants—to improve communication about reproductive health with AYA patients. Our yearly evaluation and needs assessment among ECHO-TORCH learners indicated participants experienced many ethically complicated situations. These reported challenges, similar to those described in the literature, thematically fall into broad categories including: issues relating to the patient- parent dyad within AYA care; clinician discomfort or lack of training in discussing sensitive issues relating to prognostication and sexual health; issues arising due to clinical barriers; issues arising due to psychosocial considerations; and issues arising due to financial constraints. ECHO-TORCH trainees further reported feeling they often did not have the tools needed to navigate these dilemmas, along with a lack of familiarity with support resources for approaching and resolving them, including ethics consultations. Moreover, published studies suggest allied health professionals are less likely to request an ethics consult than physicians, and that the number of ethics consults in pediatric hospitals is surprisingly low. To increase bioethics capacity, this supplement will create, widely disseminate, and evaluate the impact of a three-part pre-recorded webinar series to allow clinicians to engage in self-directed learning to: (1) develop a principled approach for defining and addressing ethical dilemmas in clinical care; (2) apply concepts that create familiarity and comfort in engaging with healthcare ethics consultants and institutional ethics committees; and (3) identify and consider key ethical dilemmas specifically arising in AYA oncofertility. The webinars will be quality tested for accessibility, engagement, and usefulness to a broad clinician audience. After dissemination, their utility will also be evaluated to allow for future improvement of these bioethics training resources.