Why relatives refuse organ donation

Organ donation refusal rates in the UK are of concern (40% rising to 70% in non-white groups). This presentation will discuss a study, commissioned by UK Transplant, which explored the end of life decision-making and hospital experiences of bereaved adults with whom organ and tissue donation was discussed and who declined donation. Twenty-six relatives of 23 deceased individuals, who chose not to donate their deceased relative’s organs for transplant operations, were recruited via three staged media campaigns in large urban areas of the UK, and from four NHS Hospital Trust intensive care units. Data were collected in 2005 via single face to face or telephone interviews. A decision to decline donation did not necessarily depend on views held by the family, or the deceased, in life, except if the deceased had stated they did not wish to be an organ donor. Therefore positive views held by the family, and the wish of the deceased to be a donor did not guarantee that donation would take place. This finding suggests that donation decisions depend, in part, on a number of factors converging. Factors such as: the family’s view about protecting the body and keeping it intact; the timing and manner of the donation discussion; a lack of information about the donation process; a desire not to prolong the perceived suffering of the deceased; a need to be with the dying and to witness the observable ending of life represented by cessation of the heartbeat. As protecting the body was the most frequently recurring theme underpinning a decision not to donate, this theme will be discussed in relation to its potential impact on the transplant programme