Background Evidence suggests that organ and tissue donation is viewed positively by the donors' family including a small amount of evidence related to palliative care. The subject of organ and tissue donation is not routinely discussed with patients referred to Leicestershire and Rutland Organisation for the Relief of Suffering (LOROS) and very few patients donate.
Aims To investigate the attitudes of hospice staff to donation and to look at the perceived challenges of discussing such issues with terminally ill patients and their families.
Methods A questionnaire based on the questionnaire developed by Vrtis (1993) was mailed to all hospice staff. Staff were then invited to participate in focus groups so their views on discussing organ and tissue donation could be explored in greater depth.
Results 76/94 questionnaires were completed. 43/76 people wanted to donate their own organs when they died, 11/76 did not. 46/76 had discussed these wishes with their family. 39/76 members of staff had discussed donation with patients in the hospice and most of them felt comfortable doing so. Most staff (49/76) only discussed the subject if it was raised by the patient, 20/76 never discussed it, one discussed this matter routinely. The majority of staff thought that the topic was best discussed when the patient was well. Most staff felt that discussing tissue donation in the hospice would cause patients and families to be uncomfortable, and that families were more likely to feel horrified than pleased if the subject was brought up.
Conclusions The study shows that staff are hesitant about discussing tissue and organ donation with patients; reasons include a fear of increasing distress, a perception that the discussions should take place when the patient is well and it being a subject that staff ‘do not even think about’ unless the patient instigates the discussion.
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