Obstacles to corneal donation amongst hospice inpatients: A questionnaire survey of multi-disciplinary team member’s attitudes, knowledge, practice and experience

Abstract

Background: Corneal donation is a sight restoring procedure. Internationally demand exceeds supply. It is a tissue that palliative care patients may be able to donate, yet donation rates from this group are low. Aim: To explore the attitudes, knowledge, practice, and experience of corneal donation from hospice staff with direct clinical contact with patients. Design: Anonymous paper questionnaire with fixed response and free text components. Setting/participants: Questionnaires were delivered to 704 clinical multi-disciplinary team members in 12 hospices within the Yorkshire Palliative Medicine Regional Learning Group, UK. Results: 434 completed questionnaires were received. Most respondents believed that corneal donation is a rewarding opportunity of which patients and families should be aware, but over 90% of respondents rarely or never raised the topic, and only 33% felt that it was part of their role. Key reasons for not engaging in discussions were: concerns about the impact of the discussion on patients and families, a belief held by hospice staff that they lacked essential knowledge, negative experiences of corneal donation, concern about enucleation, a perception that donation is not part of hospice culture, low levels of training and the personal significance of eyes. Conclusions: Despite positive staff attitudes towards corneal donation, many barriers to discussing donation were identified, which may reduce donation rates. This could be improved by local policies encompassing further education, prompts in documentation and availability of leaflets.