A Survey of Families of Brain Dead Patients: Their Experiences, Attitudes to Organ Donation and Transplantation

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Abstract
A questionnaire survey of 69 families of brain dead patients is reported. The study population included those who had been asked about organ donation as well as those who had not, those who had agreed to organ donation and those who had declined. Their experiences and their perceptions of treatment and explanations of underlying disease, brain death and organ donation were examined. Their own knowledge of and attitudes towards organ donation as well as the prior knowledge and wishes of their deceased relative were also explored. Statistical analysis did not show any differences between the three groups of families with regard to their experiences, their perceptions of the treatment they received, or in the resolution of their grief. Family members who had agreed to organ donation were significantly more likely to donate their own organs and to be more resolved in their grief. There was a strong correspondence between the attitudes of respondents and their agreement or otherwise to donate their relatives’ organs. One quarter, however, made the opposite choice for their relative, where their relative's wishes were known. There was a highly significant relationship between those who had previously discussed organ donation to have expected to be asked or to raise the subject themselves. Hospital treatment in general did not appear to have any effect on the decision to donate. Involvement in organ donation was felt by most of the donor families to have been helpful to the grieving process.