Discussing eye donation in the hospice setting

Across the UK, there is a significant need for eye donation. Some of the conditions that lead to sight loss and impaired vision can be treated with donated eye tissue, such as corneas. However eyes are the part of the body people are least likely to select when registering as a donor [1].

Corneas, which let light into the eye, can help to restore sight.

In 2019, a study on Eye Donation from Palliative and Hospice care contexts: investigating Potential, Practice, Preference and Perceptions (EDiPPPP) found there was clinical potential for patients in palliative care settings to donate their corneas after death. While a high percentage of palliative care patients surveyed in the study said they would welcome a discussion about eye donation, professionals reported that they did not know how to have those conversations.

NHS Blood and Transplant brought together a team to work with hospices to implement the recommendations of the EDiPPP study and ultimately increase eye donation from hospice patients.

The team used the COM-B model for behaviour change to identify interventions that would help raise staff confidence at having conversations around eye donation.

They developed a programme that would:

• teach clinical staff how to recognise if a patient is eligible for eye donation
• give clinical staff the facts about eye donation, which they can share with patients as needed
• empower staff to talk to patients and families about eye donation at an appropriate time and in a sensitive way.

Feedback from hospice staff involved in the programme shows that they are now much more confident at having conversations around eye donation with patients.

The team have also developed a referral process for hospice patients who have expressed an interest in eye donation. When the person has died, a nurse from the Blood and Transplant team is now able to contact their family to discuss the donation and make the necessary arrangements. The nurse also arranges for a ‘thank you’ card to be sent after the donation is complete.
 

Key facilitators

The programme was initially piloted with five hospices. Phase two of the programme included another eight hospices, and phase 3 included a further five. More phases are planned, with hospices on a waiting list. This approach has helped the team make continuous improvements and build relationships with each hospice.

Each hospice has a key contact from the NHS Blood and Transplant team, who they can get in touch with if they need extra support.

The NHS Blood and Transplant team found hospices very easy to work with! Hospices are often keen to be involved in clinical research. Staff want to learn how to have conversations about eye donation with their patients. They are already highly skilled at discussing people’s needs and wants at the end of life, so this is a natural extension.

The NHS Blood and Transplant team have developed some evidence-based resources to help hospices have understand eye donation and have appropriate discussions with patients and families.

1. University of Southampton. Research project: Eye Donation from palliative and hospice care contexts: investigating Potential, Practice, Preference and Perceptions (EDiPPP). [Internet]. University of Southampton; 2019 [cited 2025 Apr 09].