Bereavement Research Forum

Bereavement Research Forum

7. Research has shown that donation decisions may depend on the particular circumstances at the time of death. Most studies however, show that the wish of the deceased, in life, was the most influential factor in relatives’ decisions about donation. Tangible evidence of the deceased’s wish, such as a completed donorcard, was found to be helpful to relatives in reaching positive decisions about organ donation. Therefore encouraging family discussions about donation and the documenting an intention to donate, such as carrying a donorcard, or registering on the NHS Organ Donor Register, may be useful to organ donation campaigns. 8. Concerning the time of death, relatives of ventilated, major organ donors need to be given unambiguous information. The time of death for major organ donors is when death is conclusively established and no other time (DH 1998). 9. Relatives of potential organ donors are first, bereaved families, and need to be supported by staff who are educated to work with the bereaved. There needs to be constant and ongoing assessment of the family, the family dynamics, and recognition of the main decision-maker. Individualised, ongoing assessment is crucial to fulfil the family’s needs, evaluate their ability to process and use information and ensure the discussion about donation is timely. 10. There is a need for more guidance and choice to be provided by healthcare professionals about the options and the possible effects of choosing how and when relatives ‘say goodbye’ to organ donors. 11. Relatives need preparation and support for post-donation visits, e.g. Chapel of Rest, with donors. 12. There appears to be a need for improved liaison between undertakers, relatives, and the health professionals who cared for the donor. Undertakers could consult more with relatives about the presentation of the body; especially, if head or facial injuries have been sustained by the decedent. Health professionals can use their skills to minimise damage to the features while caring for the donor, carrying out corneal recovery, and by giving information to undertakers about anticipated problems in the presentation of the body. 13. There is a need for recognition of relatives’ desire for particular information about recipients and the benefits they receive from donated organs. Also, that such information may be beneficial to relatives, and that their interest may be sustained over long periods of time. 14. Interventions need be considered so that donor relatives’ wishes for recognition of donors’ contribution can be fulfilled. 15. Due to the mainly sudden, untimely and non-traditional nature of a donor’s death, relatives and significant others are at high risk of aberrant bereavement. Therefore, a need appears to exist for special bereavement follow-up and support for donor families. It may be useful for transplant co-ordinating units and hospitals to consider how these bereavement needs may be met, moving seamlessly from bedside to community (please see Interlocking model of bereavement services, Figure 1).