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Press Release - 12 September 2005

Organ retention, donation and trafficking

The global trade in death, dying and body parts

The contemporary commodity value of the human corpse is being exponentially increased by businesses operating in what is described as the 'global trade' in death, dying and body parts. The researcher has investigated the business practices of multi-national funeral home conglomerates and the ever-growing market value for human body parts/tissue in bio-medical service companies.

Covered by international trade agreements which are not beholden to any conventional judicial review, the global trade in death, dying and body parts often functions above the law of the modern nation-state. The trafficking in human cadavers and body parts is quickly becoming a lucrative global business for willing funeral home operators.

Contact:
John Troyer (University of Minnesota Minneapolis)
Tel: 001-612-870-4405


From understanding to implementation: meeting the needs of families affected by post mortem organ retention

The retention of hearts and other organs that were routinely removed at post mortem and stored without explicit consent of the next-of-kin came to public attention during an investigation in 1999 into the care of children receiving complex cardiac surgery at the Bristol Royal Infirmary. This finding triggered investigation into the practice of Alder Hey, other NHS Trusts and coroners’ services across the UK.

Some 30,000 families made enquiries about babies, children or adults, who may have been affected by organ retention. This process caused grief and distress for many families. Some family members were critical of the way the NHS responded to their need for support in dealing with organ retention.

The researchers worked with affected families to develop effective models of service that meet the needs of families and individuals affected by post mortem organ retention. Families’ bereavement needs were found to impact on their experience of organ retention highlighting issues of serial loss and renewal of grief.

Families needed information about what had happened to their deceased relatives and an apology for what had been done to them. Support groups played an important role in providing beneficiaries with information and support but a lack of resources left volunteers feeling overwhelmed. NHS Trusts initially underestimated the impact of organ retention and the resources that were needed to facilitate families’ enquiries. Best practice was linked to a philosophy that was founded upon team working, learning from mistakes, honesty, unreserved apologies and personalised and sensitive care.

Contact:
Magi Sque, (University of Southampton)
Tel: 023 8059 7970


Organ and tissue donation: a decision not to be regretted

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. As families have a time limited opportunity to consider organ donation it is imperative that the approach and discussion about organ donation facilitates a decision that will not be regretted later, coming as it does at a time when family members are emotionally and cognitively ill equipped to respond to donation requests. Through a three-year study, the researchers sought to clarify the needs of family members throughout their decision-making about organ donation and their subsequent bereavement.

They identified four main categories which illustrated the issues that influenced families’ ability to agree or decline donation and their perception of the decision-making process. The categories explicated: concerns about knowledge of the deceased’s donation wish, views held by the extended family about donation, giving meaning to the death and events that occurred in the hospital that were perceived as positive or negative. Families who did not donate reported that their decision was influenced by: a lack of knowledge about the deceased’s wishes, poor communication about the brain injury and knowledge of what was happening to their relative, unsatisfactory rapport with health professionals, a perceived catalogue of poor care preceding the deterioration to death, the view that not enough had been done for the deceased and the forthright views of family members who were anti organ donation.

Contact:
Magi Sque (University of Southampton)
Tel: 023 8059 7970


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