Bootcongres

Background: In the Netherlands the privacy of organ donors is protected by legislation. Nowadays voices are raised to make direct contact between transplant recipients and the family of the donor possible. Also healthcare workers are increasingly confronted with questions of transplant recipients to obtain more information about their donor. However, little is known about the opinion of Dutch organ transplant recipients regarding these topics. 

Methods/materials: To gain insight into the opinion of liver transplant recipients about these topics a cross-sectional survey among 244 liver transplant recipients was performed in the fall of 2012. The opinion of recipients was examined in relation with demographics, transplant-related variables and emotional factors. The questionnaire contained items regarding the opinion on anonymity and direct contact, reasons for being in favour or against anonymity or direct contact, and demographic and emotional variables Transplant-related variables were derived from the hospitals liver transplant database.

Results: Of the 179 respondents 53% agreed with the principle of anonymity of organ donation, mainly out of respect for the donor. Respondents who lived alone, were younger than 40 or older than 60 years, and those with a lower level of positive affect were significantly more in favour of anonymity. However, 65% indicated that they would like to know more about their donor, but mostly only some general information. Though 30% thought that it should be possible in the Netherlands to get in touch with the family of the donor, only 19% would like direct contact with their donor's family themselves, mainly to express their gratitude personally. Recipients with a higher educational level, and those transplanted for alcoholic liver cirrhosis were significantly less in favour of direct contact. Recipients with more feelings of guilt towards the donor had more doubts about direct contact with their donor’s family.

Conclusion: These data suggest that there is no need to change the current policy regarding anonymity of organ donation. However, most liver transplant recipients would like to receive some general information about their donor. Guidelines about the kind of information that can be given should be established.