Accepted paper:

Organ donation, end-of-life treatment and patients' rights in Japan


Alessia Costa (School of Oriental and African Studies)

Paper short abstract:

My research examines the social construction of death with reference to organ donation in Japan. By looking at how (brain-)death is defined in Japanese law and examining how such definitions are put into practice, I discuss issues of rights concerning end-of-life medical treatment.

Paper long abstract:

Previous research concerning the Japanese brain-death problem (the redefinition of death according to neurological criteria to allow organ procurement from heart-beating donors) demonstrated how scientific truths are socially constructed. I contribute to further anthropological analysis of the problem by describing what effects such a social construction of scientific facts has in practice. In the first part of the paper, I discuss how uncertainties resulting from advances in medical knowledge are dealt with through legal institutions, by examining the original and reformed versions of the Act on Organ Transplants. Born from the seemingly irreconcilable needs of equating brain-death with human death without redefining human death as brain-death, the law formalized the right for the patient and their next-of-kin to refuse a (brain-)death pronouncement after a clinical diagnosis of brain-death. One of the most significant consequences is that brain-death, which in most foreign countries is equivalent to a death pronouncement and therefore implies the withdrawal of all life-sustainment treatments, in Japan is considered as a terminal condition regarding which patients and their relatives are enabled/required to exercise their right of self-determination. In the last part of the paper, I examine how this problem is worked out in medical practice. How are the brain-death patient's rights conceived with regard to organ donation and in comparison with other terminal conditions? How are the seemingly opposite needs of protecting patients' rights and procuring organs for transplants negotiated? What does this tell us about the way we die when death occours in clinical contexts?

panel LD14
Disjunctions of deathscapes: ways of suffering, dying, and death