Sque and her collaborators analysed data collected in the UK and the USA from interviews with the relatives of deceased donors, and from letters written by donors’ families to donor recipients and to the National Donor Family Council.
While it was clear that relatives were motivated by the idea of their loss leading to the chance of life for others, it was also apparent that many struggled to “relinquish guardianship” of their loved one’s body, and to accept the idea of them being operated on. Many found it difficult to overcome the feeling that their deceased relative had already suffered enough.
A particular source of pain and distress came from the situation of ‘neurological death’, in which loved ones’ bodies appeared to still be alive because of a ventilator, even though they had been certified as neurologically dead. “She looked so beautiful, she wasn’t marked in anyway, can’t cut these eyes out you know, that’s how I sort of visualised it then”, one father said.
The researchers concluded: “Although the gift of life discourse may remain useful for heightening public awareness about the benefits of donation, this is not an adequate framework for understanding what is important for the family at the bedside faced with a donation decision…Such decisions are more closely related to sacrifice”.
Sque, M., Payne, S. & Clark, J.M. (2006). Gift of life or sacrifice?: key discourses for understanding of organ donors’ decision-making by families. Mortality, 11, 117-132.
Link to UK Transplant, where you can add your name to the organ donor register.
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