Abstract
Providing genetic counseling for the end-of-life (EOL) oncology patient population differs from a “traditional” cancer genetic counseling session as it presents numerous, unique challenges. The complexity of counseling EOL patients varies depending on the extent of patients’ visible signs of illness, their level of participation in sessions, the presence of family members and/or the health care proxy, and any underlying psychosocial issues. We explored the experiences and comfort levels of cancer genetic counselors when providing risk assessment and genetic counseling to EOL patients. We utilized an anonymous online survey and received 158 responses. The largest proportion of our participants (45.6%) was between 20-30 years of age. Years of experience ranged from 0.5-32 years, with 85 respondents having 0.5 to 4 years of experience, and 69 participants having more than 5 years of experience. We did not observe a significant relationship between years of experience and comfort level when counseling EOL patients. The vast majority of participants were comfortable discussing topics such as risk assessment and the chances of a patient’s child having the same genetic condition. However, regardless of years of experience, fewer individuals reported that they were comfortable with discussing psychosocial issues such as support services and exploring the patient’s emotions about their prognosis. Responses to hypothetical scenarios demonstrated that many participants felt discomfort when faced with discordance between a patient’s hopes and physical realities, patient’s fear of dying and disagreement within family members. Participants felt there was a lack of resources, such as case examples, guidelines and educational sessions that could potentially help cancer genetic counselors feel more comfortable when counseling EOL patients. The majority of counselors advised others to approach this “non-traditional” genetic counseling session without expectation, and felt it was important to let the patient guide the session. Additionally, participants felt it was important to give their patients distilled information. Our results provide insight into the experiences and comfort level of cancer genetic counselors when working with EOL patients. Future studies exploring the patient perspective would provide additional insight and, combined with the data from our study, could be used to develop guidelines and resources aimed at increasing genetic counselors’ comfort level when counseling their EOL patients.