A private matter: how patients decide what to do with cryopreserved embryos after infertility treatment

This study describes patients' satisfaction with the information they received regarding the disposition of supernumerary embryos in the context of their decision making, as well as partners' roles and the involvement of others. An anonymous mail questionnaire was sent to 412 female patients from the Department of Reproductive Medicine (Ghent University Hospital, Ghent, Belgium). The questionnaire had a response rate of 79%. The majority of patients who did not want to continue the storage of their embryos (87.9%) thought the information provided was sufficient to make a decision. Patients who were not satisfied more often failed to reach a decision compared to other patients (4/25 vs. 6/173, p = 0.0248). The majority of couples (81.7%) reached a decision jointly between partners. Nonetheless, in 15.6% of couples, one of the partners had made the decision alone, mostly after consulting their partners. Only a minority of the couples (13.2%) consulted others (mostly family members or close friends), suggesting that patients view these decisions as a private matter. Only 1.1% of all patients had talked to someone at the centre about their decision. To conclude, for most patients, the information provided was adequate in light of their disposition decision making. Overall, patients' decision making appears to be a private matter which happens out of sight from medical staff, making it hard to assist patients who face difficulties.