Perspectives surrounding fertility preservation and posthumous reproduction for adolescent and young adults with terminal cancer: Survey of allied health professionals

Abstract

Background While all reproductive‐aged individuals with cancer should be offered fertility preservation (FP) counseling, there is little guidance over offers to adolescent and young adults (AYA) with terminal diagnoses, especially when considering posthumous assisted reproduction (PAR). The Enriching Communication skills for Health professionals in Oncofertility (ECHO/ENRICH) trains Allied Health Professionals (AHPs) to improve communication with AYAs with cancer. Little is known about AHPs' role in assisting in FP and PAR decisions. Methods This is a cross‐sectional survey of ECHO/ENRICH trainees' attitudes and experience with FP and PAR in AYA with terminal cancer. Results The response rate was 61% (365/601). While 69% felt comfortable discussing FP with terminal AYA after ECHO/ENRICH training, 85% desired further education. The majority (88%) agreed FP should be an option for AYA with cancer, though some agreed offering FP provided false hope (16%) or was a waste of resources (7%). Most shared that avoidance of FP discussions was common practice, especially in the medically fragile, late‐stage disease, or among minors. Many attributed lack of conversations to oncology team goals. Only 9% had prior experience with PAR. Many were conflicted about how PAR reproductive material should be gifted and who should be permitted to use PAR. Several raised moral concerns for PAR, or discomfort advising family. Many voiced desire for additional PAR‐specific education. Conclusion ECHO/ENRICH trainees had varied levels of exposure to FP in terminal AYA and limited experiences with PAR. Many expressed uncertainties with PAR, which may be alleviated with further training and transparent institutional policies.

Ethical and psychological considerations for posthumous-assisted reproduction for adolescents and young adults with poor cancer prognosis in the context of grief.

“…In light of these ethical and psychological considerations for PAR in the context of grief, providers will want to be thoughtful about how to best support these families of AYA with poor cancer prognosis. Previous research has found that many allied health professionals feel uncomfortable discussing fertility preservation and PAR in the context of AYA with poor cancer prognosis, which can result in avoidance of these topics, and ultimately, lead to inadequate support for patients and their families (Barrett et al, 2023). The first step in addressing the ethical and psychological concerns for PAR in the context of grief is improving professionals’ comfort and competence with fertility preservation and PAR as well as their ability and comfort communicating about these topics, which can be developed through provider training, such as ECHO/ENRICH (Barrett et al, 2023; Vadaparampil et al, 2016).…”

“…Previous research has found that many allied health professionals feel uncomfortable discussing fertility preservation and PAR in the context of AYA with poor cancer prognosis, which can result in avoidance of these topics, and ultimately, lead to inadequate support for patients and their families (Barrett et al, 2023). The first step in addressing the ethical and psychological concerns for PAR in the context of grief is improving professionals’ comfort and competence with fertility preservation and PAR as well as their ability and comfort communicating about these topics, which can be developed through provider training, such as ECHO/ENRICH (Barrett et al, 2023; Vadaparampil et al, 2016). These trainings uphold APA ethical principles as a measure to improve care, reduce misinformation, increase accessibility of knowledgeable providers, and promote the informed consent of AYA and families.…”