This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
In a mixed methods study, researchers investigated eye donation practice in end of life care. They found that:
- few service users or their family members were approached to discuss eye donation, though many service users were eligible
- clinicians were willing to have these discussions but lacked confidence
- service users support these discussions as part of end of life planning.
The researchers have developed an intervention to support eye donation in palliative care settings.
Information on eye donation is available on the NHS website.
The issue: a shortage of eye donors
More than 2 million people in the UK have sight loss; this number could double by 2050. Many could have their sight restored with a replacement cornea (the clear outer layer of the eyeball) from a donated eye.
However, there is a shortage of eye donors. The NHS target is 350 eye donations per week; only 88 take place. Many people who die of cancer could donate their eyes. Therefore, hospices and palliative care services could ensure that eye donation is discussed with service users.
In this study, the researchers assessed the potential for eye donations in hospice and palliative care settings, and explored clinicians’ and service users’ views.
What’s new?
Researchers carried out their study in 3 hospice and 3 palliative care settings in England. They analysed the notes of 1,199 deceased people and found that:
- almost half (46%) of those patients were eligible to donate their eyes
- of those who were eligible, few (4%) had been approached to consider eye donation.
The researchers interviewed 105 clinicians about their views on eye donation; 156 more responded to a survey (of 1,894 clinicians invited). They found that clinicians felt eye donation was worthwhile, and were motivated to discuss it with service users. However, clinicians:
- did not routinely discuss eye donation as part of end of life care planning (72%); almost half (48%) said it was not encouraged in their clinical setting
- lacked confidence discussing eye donation and were concerned that patients and families would become distressed
- were unfamiliar with eligibility criteria and processes to facilitate eye donation
- wanted training; more than half (61%) had received none and there were few policies or guidelines.
The study also included interviews with 62 service users. In contrast to the clinicians' views, service users and carers:
- did not think eye donation was too distressing to discuss (none thought this)
- were unaware that people with cancer could donate eyes, and wanted information about eye donation early, when starting palliative care
- had confidence in clinicians’ ability to handle the topic appropriately, and at the right time.
Service users wanted their decision to take priority over family members’ wishes.
Why is this important?
Few discussions about eye donation take place in palliative care settings and yet both service users and clinicians want to have these discussions. The researchers therefore suggest that eye donation becomes a standard part of end of life care planning. If people are approached to consider eye donation, and agree to it, this could potentially end the current shortfall in eye donations for use in sight saving and sight restoring operations.
Clinicians may need training to understand the process of eye donation and to handle conversations sensitively. They would value guidance and policies on eye donation in palliative care.
What’s next?
The research team developed an intervention to support clinicians to encourage eye donation: Support Toolkit for Eye Donation in Palliative Care Settings (STEPs). The intervention outlines local and national processes that could permanently increase eye donation.
1. Establish processes to identify, assess and refer potential donors.
2. Develop initiatives to underpin organisational capability, motivation, and opportunity to embed eye donation in routine practice.
3. Roll out national education and training initiatives for individual professionals.
4. Develop, monitor and assess public awareness Initiatives in specific contexts.
The intervention led to increased donations in 6 pilot sites. It will be rolled out to 14 more in 2024; the researchers will continue to explore progress and impact.
You may be interested to read
This is a summary of: Long-Sutehall T, and others. Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study. Health and Social Care Delivery Research 2023; 11: 1 – 194.
An NHS blog about the importance of eye donation.
An NHS article on common myths about eye donation.
Research examining barriers and enablers to eye donation: Madi-Segwagwe BC and others. Barriers and facilitators to eye donation in hospice and palliative care settings: a scoping review. Palliative Medicine Reports 2021; 2: 175–87.
Research exploring eye donation in hospices: Gillon S and others. Eligibility for corneal donation within the hospice population. Palliative Medicine. 2010; 24: 551–552.
Funding: This research was funded by the NIHR Health and Social Care Delivery Research programme.
Conflicts of Interest: The study authors declare no conflicts of interest.
Disclaimer: Summaries on NIHR Evidence are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that the views expressed are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.
