A qualitative study using semi-structured interviews of palliative care patients’ views on corneal donation and the timing of its discussion

Abstract

Background: Corneal transplantation can lead to sight restoration, but globally there is a donor shortage. Many palliative care patients can donate their corneas but think they are ineligible due to comorbidities. Healthcare professionals are reluctant to broach the topic, but studies have shown that relatives would be upset if they were not offered this chance. There is no existing research involving patients. Aim: To understand the views and feelings of patients in palliative care settings towards corneal donation and explore their opinions regarding the timing of its discussion. Design: This is an exploratory study based at one UK palliative care unit. A census sampling method was used. Nine participants took part in semi-structured interviews and thematic analysis was undertaken. Results: Themes found included altruistic motivation and the value of sight. Family views were important, but the influence on final decisions varied. The timing of discussion relative to the illness trajectory was important; patients want to be able to engage fully in conversations and had concerns about not being able to think clearly when closer to death. Participants also associated discussion of donation as an indication of a poor prognosis. Patients prefer face-to-face discussions with someone whom they had a close rapport. Many had misconceptions about eligibility. Conclusion: This is the first study to engage directly with palliative care patients and to establish their views on the timing of corneal donation discussions. Patients are willing to discuss donation, and further exploration of patient views in this area should be undertaken.