Eyes are the least-donated organ or tissue in the UK and many people are unaware they can donate, researchers said at a Royal Society of Medicine (RSM) event.
Thousands of potential eye donors are being missed in the UK every year, often because healthcare professionals avoid the topic.
According to the World Health Organisation, around 10 million people globally have bilateral corneal blindness, which could be corrected with a cornea transplant. Likewise, in the UK, more than two million people have sight loss caused by conditions such as Fuchs' corneal dystrophy, also treatable with a cornea transplant.
To meet all treatment and research needs, the UK needs to make available 350 eyes a week but currently only manages 88.
Ongoing research, presented at the RSM, suggests that healthcare professionals are more reticent than patients about discussing the possibility of eye donation during end-of-life care.
Not wishing to cause distress to patients and families, lack of specific training and low confidence were common barriers mentioned to researchers by healthcare professionals. The evidence shows, meanwhile, that patients are willing to have these conversations and most want to make the decision for themselves.
Dr Tracy Long-Sutehall, University of Southampton, interviewed healthcare professionals, patients and families at hospices and palliative care departments of hospitals. At the RSM event on 2 March 2023, she said: “One of the key barriers to raising eye donation that's shared with us by healthcare professionals is that they're concerned that this will cause distress.
“Yet, when we talked to the patients, they said that it was not an issue. In fact, their view was that there are other sensitive topics raised within these conversations, such as funeral arrangements and resuscitation questions; therefore, for them, this fitted in with those topics.
“The majority were not aware of eye donation being an option for them.”
Dr Long-Sutehall reviewed recent deaths in a hospice setting and found that 56% were eligible for eye donation but only 14 patients and 13 family members were recorded as having been approached. Hospices reviewed in the study referred an average of seven donors a year to NHS Blood and Transplant.
Many patients mistakenly believe they cannot donate because of their medical condition.
Dr Sarah Mollart, Consultant in Palliative Medicine, St Nicholas Hospice Care, said that many eye donors were grateful for the opportunity to give the gift of sight. She said: "Most patients I interviewed were surprised but pleased to hear that they might be able to donate eye tissue and thereby help others after their death.”
All agreed that more and better training for healthcare professionals was crucial in normalising conversations around eye donation. Patients would prefer these conversations to take place earlier in their care trajectory, when they are emotionally and physically able to consider the issue fully, said Dr Long-Sutehall.
This also helps prepare family members. Because corneas need to be taken within 24 hours of death, often relatives are taken by surprise when they receive the call. As Emma Winstanley, Lead Nurse, Tissue and Eye Services, NHS Blood and Transplant said: “It's a big ask to have a stranger contact you, asking you very intimate clinical questions about somebody who's just died. So, the skill of those nurses is incredibly important.”
‘The gift of sight: Raising the option of eye donation as part of end-of-life care planning’ was organised by the RSM Palliative Care Section. The Section’s Dr Claire Smith hosted the meeting.