Comment: The families of organ donors are usually deprived of the opportunity to be present when the donor’s heart stops beating. As this personal account by van Os eloquently demonstrates,1 forsaking this opportunity can be experienced as an additional loss — one that exacerbates a family’s trauma during the donation process and that possibly imperils the donation itself. We should not underestimate the cultural significance of heartbeat and breath, and the symbolic importance of the moment in which they cease. Neither is diminished by medical redefinitions of death.

Should we do more to educate Australians about the fact that a donor must enter the operating theatre attached to a respirator with a heart still beating? There may be some reluctance to do so on the grounds that drawing attention to this might drive Australia’s low donation rates even lower. There is also no strong precedent to do so; countries with high donation rates such as Spain, France and the United States do not generally make this information publicly available. On the other hand, information provided to Australians about organ donation does now routinely include discussion of other sensitive issues, such as the diagnosis of brain death, the organ retrieval process and the physical appearance of the donor’s body after surgery.2 Although no amount of disclosure can fully prepare a donor’s family for the experiences they are about to face,3 a more detailed and carefully worded explanation of why brain death necessitates the mechanical ventilation of a donor immediately before surgery may help address the key issue identified by van Os: that the hospital bedside is not the place to find out about this for the first time.

Overseas experience suggests that organ donation after brain death depends heavily on trust.4,5 Trust surely rests on frank and open disclosure. If the latter also helps to prevent one nasty shock to a family being exacerbated by another, then there are two sound reasons to pursue this policy.