Background Fewer than half of families agree to donation if unaware of their loved one’s decision to be a donor. This rises to over 9 in 10 when the decision is known (organdonation.nhs.uk). All previous research on this topic bar one recent qualitative study has focused on views of health professionals, or relatives.
Aims The aim of this study was to determine the best way to ask about corneal donation; by asking patients directly. Secondary aims were to establish whether patients knew they could donate corneas despite having cancer, if they would donate and if they had registered their wishes.
Methods Twenty patients with a palliative cancer diagnosis, were given a questionnaire to complete anonymously. Questions asked about current understanding and views on organ donation, whether any wishes were registered, and how they felt we should ask about donation.
Results 18 completed questionnaires were returned. Only 2 patients were aware that cancer patients can donate corneas. Despite 11 patients stating they had previously considered donation, and 17 stating they would wish to donate, only 4 had registered their wishes online. The same 4 also carried a donor card. The majority felt it didn’t matter who asked (10), or where (16). 11 felt face to face was best although 6 felt it would be acceptable to ask via questionnaire. Patients were divided on when the best timing would be. 15 patients felt we should discuss donation routinely at the time of hospice admission, and the same 15 felt we should routinely ask all patients under hospice care.
Conclusion The majority of patients would consider donating but don’t realise they are eligible to do so. Most patients feel we should routinely ask about donation; even if they did not wish to donate themselves. Education is required to empower health professionals to start conversations.
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