Family refusal of eye tissue donation from potential solid organ donors: a retrospective analysis of summary and free-text data from the UK National Health Service Blood and Transplant Services (NHS-BT) National Referral Centre (1 April 2014 to 31 March 2017)

Abstract

ObjectivesLong-standing undersupply of eye tissue exists both in the UK and globally, and the UK National Health Service Blood and Transplant Service (NHSBT) has called for further research exploring barriers to eye donation. This study aims to: (1) describe reported reasons for non-donation of eye tissue from solid organ donors in the UK between 1 April 2014 and 31 March 2017 and (2) discuss these findings with respect to existing theories relating to non-donation of eyes by family members.DesignSecondary analysis of a national primary data set of recorded reasons for non-donation of eyes from 2790 potential solid organ donors. Data analysis including descriptive statistics and qualitative content analysis of free-text data for 126 recorded cases of family decline of eye donation.SettingNational data set covering solid organ donation (secondary care).Participants2790 potential organ donors were assessed for eye donation eligibility between 1 April 2014 and 31 March 2017.ResultsReasons for non-retrieval of eyes were recorded as: family wishes (n=1339, 48% of total cases); medical reasons (n=841, 30%); deceased wishes (n=180, 7%). In >50% of recorded cases, reasons for non-donation were based on family’s knowledge of the deceased wishes, their perception of the deceased wishes and specific concerns regarding processes or effects of eye donation (for the deceased body). Findings are discussed with respect to the existing theoretical perspectives.ConclusionEye donation involves distinct psychological and sociocultural factors for families and HCPs that have not been fully explored in research or integrated into service design. We propose areas for future research and service development including potential of only retrieving corneal discs as opposed to full eyes to reduce disfigurement concerns; public education regarding donation processes; exploration of how request processes potentially influence acceptance of eye donation; procedures for assessment of familial responses to information provided during consent conversations.

Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study

“…Data from UK-based studies indicate that personal views of potential donors and family decision-makers are influential in triggering a decline to donate when ED is proposed. 4 Prominent concerns include potential for disfigurement, 5 beliefs compatible with eyes being needed in the afterlife and/or that eyes as 'windows to the soul' are an essential aspect of a person even after death. 5,6 ED is also known to elicit specific disgust-type responses in some patients and family members, characterised as an 'ick factor' attended by feelings of squeamishness in respondents 7 that is not observed in other forms of donation.…”

The potential for eye donation from hospice and palliative care clinical settings in England: a retrospective case note review of deceased patients' records

“…Addressing barriers to ED require attention to the unique and specific challenges that are associated with this specific form of donation; for example, why do family members of organ donors frequently reject ED despite agreeing to other organs (and tissues)? Data from UK-based studies over the past five years indicate that personal views of potential donors and family decision makers are influential in triggering a decline when ED is proposed (Bracher et al 2021 ). Prominent concerns include potential for disfigurement (Lawlor and Kerridge 2011 ), beliefs compatible with eyes being needed in the afterlife, and/or that eyes as ‘windows to the soul’ are an essential aspect of a person even after death (Lawlor and Kerridge 2014 ).…”

Arguments for ‘ocular donation’ as standardised terminology to reduce the ‘ick factor’ of ‘eye donation’

“…In 45% of countries which provide corneal tissue donation services, the system requires explicit consent from the donor and/or their family (opt-in) 1. Several studies worldwide have reported high rates of consent refusal2 3 with concern about the ‘ick factor’ (repulsion/disgust response) of ‘eye donation.’2 4…”