Objective I: investigate existing routine practice in relation to ED across HC and HPC settingsCurrent practice in raising and discussing the topic of ED with patients and families

Questions sought participant experiences of ED-related practice (Table 1) Eighty-four percent of participants (n = 131) indicated that they were ‘[a]ware that ED is an option that patients can choose as part of advance care/end of life care planning’, with 15% (n = 24) indicating that they were not aware that ED was an option for patients in this clinical setting.

Table 1 Responses to questions relating to ED practice (Q18-22; 35 – greater intensity of blue indicates value closer to 100%)

Of those aware that ED was an option, a majority (48%, n = 63) indicated that their clinical setting does not ‘actively encourage the option of ED being discussed with patients and/or their families’ with 35% (n = 46) indicating that their setting did. Only fifteen participants selecting ‘Other’ provided comment indicating that ED was included in some form of organisation documentation but that clinicians may make an active decision not to discuss the option based on their assessment:

“It is mentioned on the admission paperwork as an option to possibly discuss, it is rarely appropriate due to their underlying diagnosis of current clinical condition” (Palliative Physician, HC setting).

A majority of respondents (72%, n = 95) indicated that staff within their clinical setting did not ‘routinely discuss the option of ED in end-of-life care planning conversations with patients and/or family members’, with the majority of participants who were aware that ED was an option (83%, n = 109) reporting that the option of ED was not ‘routinely discussed in multi-disciplinary team or other meeting’:

“We try to make this the case, but in practice it doesn't always happen” (Consultant in Palliative Medicine, HC setting)

In response to the question: ‘Which of the following best describes your current practice?’, 44% (n = 68) of total participants indicated that they discuss ED ‘only when the subject is raised by patients or families’ with 22% indicating that they ‘never discuss ED with patients or families’. Only 13% (n = 20) of total participants indicated that they ‘routinely discuss [this option] with patients and families’. Results also indicate that the majority of participants had not raised the option of ED in the past year (Table 2).

Table 2 Responses to questions regarding to discussing ED with patients Q28, 30- greater intensity of blue indicates closer to 100%)

The following findings are limited to those participants who indicated that they had experience of discussing ED with patients or family members (n = 115). Eighty-eight percent (n = 101) of these participants had discussed ED with family pre-death of a patient, with 20% (n = 23) reporting post-death discussions with family.

Objective II: identify the perceptions of healthcare staff of embedding ED into routine end of life care planning.Perceptions of HCPs regarding propriety and feasibility of discussing ED with patients and/or families

Participants were asked to indicate their response (i.e. ‘Agree’, ‘Unsure’, or ‘Disagree’) in relation to a series of statements regarding the option of ED being raised with patients and families. Seventy-three percent (n = 114) of total participants disagreed with the statement ‘[d]iscussing ED is too distressing for a patient and/or their family’ with sixty-three percent (n = 99) of total participants agreeing that ED should be discussed with eligible patients and/or their families. Sixty-one percent (n = 95) of total participants agreed that they ‘feel confident in starting a conversation about ED with a patient and/or their family’, however half of respondents (50%, n = 78) indicated that they had some concerns about how a patient or family might respond (Table 3).

Table 3 Responses to statements relating to participant perceptions of eye donation (Q11-16—greater intensity of blue indicates closer to 100%)

The majority of participants indicated that it was their role to raise the option of ED (73%, n = 114) and that it was important that patients know that ED is an option for them if it is (95%, (n = 145). (Table 3).

Participants were asked about when the option of ED should be raised with patients with the majority of participants indicating that this discussion should take place ‘during advanced care planning (80%, n = 125), which could take place at multiple time points across the end-of-life care planning trajectory.

Availability of clinical guidance and information to support ED conversations with patients/families

Sixty-one percent (n = 81) indicated that their setting does not ‘include ED in its admission documentation’ (Table 4). Forty-six percent (n = 61) of participants who were aware that ED was an option for patients indicated that their clinical setting did not ‘have clinical guidelines in written form that include ED’, and fifty-eight percent (n = 90) of total participants indicated that there was no ‘donation link person or champion in [their] service’ with 24% (n = 38) responding ‘[d]on’t know’. Sixty-one percent (n = 81) indicated that written information for patients and family was available in their clinical setting (Table 4).

Table 4 Responses to statements relating to participant experiences of availability of clinical guidance and information to support eye donation conversations with patients/families (Q24-26 - greater intensity of blue indicates closer to 100%)Objective III: investigate the existing informational, training, or support needs of HCPs needed to embed ED in routine practiceKnowledge of contraindications and processes for ED

To assess HCPs’ current knowledge base regarding ED we included a short section ‘flash quiz’, exploring three key questions about the ED pathway. Content analysis was performed on the free-text responses to categorise them by type (Table 5). Responses to the question ‘how long after death can eye donation take place?’ indicated that just over half of all participants (53%, n = 83 of 156) understood that ED can take place up to 24 h after death. Eighteen percent of participants (n = 28 of 156) indicated that they did not know the time limit.

Table 5 Flash quiz questions

When asked to identify definite contraindications for ED (in free-text responses), infections were most commonly indicated (41%, n = 63), followed by cancers (35% n = 54), and neurological conditions (31%, n = 48). When asked what should happen before ED can take place, 37% (n = 57) participants indicated that patient or family consent was required (this is correct), while 12% (n = 19) indicated that a blood sample is required (this is correct).

Training and resource to support ED

Most respondents had not received any training about ED (61%, n = 95), while for those who had received training, the training had been provided by their clinical site hospital or hospice (44%, n = 61) or other sources (56%, n = 34). Fifty-four percent of participants who had training undertook this at least 24 months prior to completion of the survey. Seventy-two percent of all participants completing a training programme (n = 61) stated that it did provide them with the information they needed to be confident in discussing eye donation with patients/family (Table 6).

Table 6 Results from survey questions exploring previous ED-related training

To gain some insight into the content and quality of the training participants were asked to comment on the positive or negative aspects of the training they received. Many comments indicated an initial positive impact of the training, together with concern about longer term embedding of this in routine practice:

“It has a brief effect on practice and then it fades!” (Consultant in Palliative Medicine, HPC setting)

“Everyone very enthusiastic but it has not been effectively implemented” (Manager/Head of Service, HPC setting)

Participants providing free-text responses indicated several ‘unmet knowledge or training needs’ including: the eligibility criteria for ED; processes needed to facilitate ED; and best practice in communication with patients and families:

“I would appreciate an update in the new legislation and local procedures and guidance on contraindications/ which organs and how to go about it.” (Consultant in Palliative Medicine, HPC setting)

"I really don’t know what I don’t know. I am rusty on how to start the conversation, how to instruct a patient, what to say to the family about the process, the eligibility criteria, the register etc" (Manager/Head of Service, HPC setting)