Assessing the perspectives of genetic counselors with oncology patients at the end of life

Cancer genetic services identify individuals that may have a hereditary component to cancer, as it is estimated that up to 10% of cancers are due to a cancer-predisposition gene variant. When an oncology patient has reached the end of life (EOL), genetic counseling and testing may benefit the patient and their family by clarifying hereditary cancer risks. Previous studies have demonstrated that patients at the EOL are underserved in receiving genetics services, and few studies have explored the readiness of genetics providers to work with these patients. This study builds on previous work aiming to better understand the experiences, preparedness, and comfort levels of genetic counselors when working with oncology patients at the EOL. A survey was created in REDCap® and distributed to the National Society of Genetic Counselors listserv. A total of 148 responses, which represents ~10% of clinical cancer genetic counselors, were included for data analysis and were summarized using descriptive statistics. Almost all respondents (92.6%) reported experience with oncology patients at the EOL, with 91.9% being comfortable with and 89.2% feeling prepared to provide genetic counseling to this population. Despite high comfort and preparedness, 77% of respondents desired additional educational training opportunities about providing genetic counseling to oncology patients at the EOL, supporting the need for ongoing education opportunities. The high comfort levels and preparedness reported in this study suggest that genetic counselors are ready and willing to counsel patients facing a terminal diagnosis of cancer and should be further integrated into multidisciplinary teams. Genetic counselors reporting experience with patients at the EOL suggest that patients may be receiving genetics services more frequently than previously reported. As access to genetic services expands, integrating conversations about EOL scenarios into continuing education efforts may better equip genetic counselors to meet the unique needs of this patient population.