Background Cornea disease causes blindness. Cornea transplants are highly successful, but limited by shortage of donated corneas. The UK annual shortfall is ‰¥500 corneas. There are many eligible UK donors (50% of hospice deaths) and the British public are largely in favour of donation. However, most hospice staff are unaware or unwilling to raise the topic of cornea donation (CD). Fear of causing distress is known to be a factor. We conducted a service evaluation to explore the responses of patients offered CD.
Method The study was at an 8-bedded UK hospice. Previously, no hospice patients had donated their corneas. Staff education was undertaken first. For the study period (six weeks) all patients admitted were screened for CD eligibility. Those eligible were offered information, at an appropriate time. Exclusion criteria were being unable to engage in conversation, or distress during other discussions about dying. All patients were given anonymous questionnaires afterwards.
Data regarding the number of patient donating was also collected.
Results 15 of 29 inpatients were eligible for CD, and offered information. 11 questionnaires were returned. Patients were asked ‘How did you feel about being informed?’ 55% were ‘glad ‘45% had ‘no strong feelings either way ‘(None ‘didn’t like it’.) They were also asked ‘Was it upsetting to be informed?’ 73% said ‘No’?; 27% said ‘Yes, but I’d still rather have had the conversation ‘(None said ‘Yes, and I didn’t like talking about it.’)
Of 15 patients offered information, 6 went on to donate. Patients are routinely offered CD information since. Over 20 months, 40 people donated, averaging 48 donated corneas/year.
Conclusions Staff fears of causing patients/families distress by discussing CD are unfounded. Failing to inform patients/families deprives them of their option. Routinely discussing CD leads to a significant rise in donations; this benefits those waiting for transplants.
(Project Highly Commended in the 2017 BMJ Awards)
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