The experiences of donor families in the hospice

Abstract

Objectives: This study explored the experiences, attitudes and feelings of relatives who consented to donation of corneas of a loved one who had died of cancer. Design: Semistructured interviews were conducted by a single researcher and qualitatively analysed for systematic identification of themes. Setting and participants: Two specialist palliative care units in Southern England participated. The names of donor families were obtained via transplant coordinators, the local eye bank and hospice records. Ten donor families were interviewed, four to 12 months after their relative's death. Results: The majority of interviewees had thought the deceased was ineligible for donation due to cancer or old age. Approaches regarding donation were generally made by nurses and described as sensitive by relatives. Very few family members would otherwise have considered or raised the subject. Almost all were glad they had agreed to donation although few felt it directly affected their bereavement. A range of motivations for consent was encountered but decisions were very much easier if the deceased's wishes were already known. Most favoured an opt-out system or the right of the family to decide if the deceased's wishes were not known. Conclusions: Corneal donation is possible for patients dying from cancer. This study indicates that it is generally regarded positively by donor family members. Education of the public and health professionals is necessary to highlight both the eligibility criteria and the need for donation. Families should be encouraged to discuss donation to facilitate respecting individuals' wishes. In the absence of a known decision from the deceased, health professionals should be aware of their responsibility to discuss the issue with the family.