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).