Family, patients, and organ and tissue donation: who decides?

To identify who is responsible for the decision to donate organs and tissues from a deceased donor.

This cross-sectional study was performed with 69 family members of deceased donors, identified by the Organ Procurement Organization.

The decision of the family regarding the request for donation took place after they had enough time to reflect on the matter (81.8%). The decision was made by the family (43.5%), by both family and donor (76.8%), by the family with previous knowledge about their deceased relative's wish (63.2%), or only by the donor (11.6%). There was familial conflict after the decision in about 7.2% of donations; 63.2% of the families were aware of their deceased relative's wish, and 90.5% were aware that their relative's wish helped them make the decision. Women were most frequently responsible for the decision to donate (55%).

The donation process is experienced by all the family, regardless of who signs the consent form. At times, it is precisely the discussion about what is conflicting that will enable the familial decision. The donor's autonomy alone was shown to be a poor indicator, as the ones who decide about the donation are the family. This, therefore, legitimizes the alteration made to Law No. 9,434/97, which gives family members the responsibility for the decision about organ and tissue donation from their deceased relatives.