making about organ donation
This chapter explores the experiences of family members during their hospital stay, from admission, through the confirmation of death using brainstem testing to the request for organ donation. It considers the approach and discussion about organ donation with the aim of identifying factors that may support family members as they make decisions regarding donation. The chapter will draw upon a three-year longitudinal study carried out by Sque et al. (2003) as well as research selected from the last 15 years.
End of life decisions remain with the living long after the death of a family member and have been implicated in abnormal and complicated grief (Saunders 1993; Wright 1996). As families have a time-limited opportunity to consider organ donation, it is imperative that the approach and discussion about donation by health professionals facilitates a decision that will not be regretted later (Burroughs et al. 1998). In their study examining the psychological consequences of consenting or refusing organ and tissue donation, Burroughs et al. (1998: 161) reported that 21 per cent of their sample of 159 donating and 66 non-donating family members 'indicated that they would not make the same decision again', that in fact they were dissatisfied with their decision. How do we ensure that people are satisfied with their decision regarding organ donation and that they leave the hospital comfortable with the decision they made in the most difficult of situations, the sudden unexpected death of a relative, and not just a sudden death but a death that is diagnosed using neurological criteria?
Neurological death, whether it be whole-brain death (USA) or brainstem death (UK)1 is a prerequisite for cadaveric organ donation (unless donation of livers and kidneys follows circulatory arrest) and is therefore a fundamental factor in the process of organ and tissue donation for transplantation. Testing