A total of 46 interviews were undertaken involving inpatient palliative care unit patients (n = 19) and clinicians (n = 27) in three major inpatient palliative care units in South Australia. Of 37 patients approached to participate in the study, 19 consented to be interviewed. Thus 18 patients either declined to participate (n = 7) or the interviewer assessed them as not meeting the inclusion criteria due to a change in circumstances (n = 11). Patient demographic information is presented in Table 1. Sixty-eight clinicians were approached either by email or directly in person. A total of 27 clinicians responded and consented to be interviewed. Six of the 27 clinician interviews were conducted by telephone. Clinician demographic information is presented in Table 2.

Table 1 Demographics for the 19 participating patientsTable 2 Demographics for the 27 participating clinicians

Data were classified into 97 codes, 14 subcategories, and four overarching categories (see Additional file 2 for the full analysis structure) that described the differing perceptions of palliative care patients and clinicians regarding corneal donation discussions. Additional file 3 provides representative extracts that support the subcategories from the perspective of each participant group. Figure 1 illustrates the four overarching categories and respective subcategories.

Fig. 1

Overarching categories (Light grey) and subcategories occurrence frequencies are represented as n (%) and based on the total number of patients (n = 19) and clinicians (n = 27) that produced corresponding data for each category and subcategory

Category one: Understandings and experiences of corneal donation discussions

The first category captured subcategories related to differing and shared understandings and experiences of corneal donations discussions between patients and clinicians. The first subcategory described shared perceptions of patients and clinicians regarding current practices and public awareness. Both groups viewed donation discussions as important. However, they perceived limitations regarding current practices, knowledge, education, and awareness about this topic. Consequently, donations were often not seen as being thought about or discussed:

“I don’t do it all the time as we have so many other things to discuss and to be honest in the centres, we are working in at the moment, it is not embedded in our everyday practice” (Doctor 4).

The second subcategory captured the perceptions shared by both patients and clinicians of the beneficial nature of corneal donations. Both patients and clinicians acknowledged corneal donations as beneficial, providing psychological benefits, a sense of purpose, and legacy for patients with illnesses that limit organ donation options, while offering sight and research contributions to others:

“The fact that I can potentially give sight to someone else is fulfilling for me, even though I know I won’t be around to see it afterwards” (Patient 7).

The third subcategory captured the experiences and perspectives specific to clinicians. While most clinicians stated that they would be comfortable asking about corneal donations, and only four indicated that they would find it difficult, they did not generally ask patients. Instead, they waited for patients to inquire and only discussed donations when there was an opportunity. Clinicians may not ask due to fear and reluctance, or because it was unclear who should initiate these discussions due to possible concerns over professional limitations:

“No as I don’t think it [asking patients about their corneal donation preference] is in the remit of being a nurse … I feel it is outside of my scope” (Nurse 12).

The fourth subcategory captured the experiences and perspectives that were specific to patients. The majority had never been asked about corneal donations, even though they indicated they would like to be asked. Only two patients were unsure about being asked and one indicated that they would not want to donate their organs for research. Patients stated that they were left to find out about corneal donations themselves, and because of a lack of information there was concern that their medical conditions would prevent donation:

“I decided a long time ago even before my cancer that I would be a donor, but now that I have cancer I don’t know if I can, so bringing this up would help me determine this” (Patient 17).

Category two: The characteristics and dynamics of parties involved in corneal donation discussions

The second category captured descriptions of the desired characteristics of parties involved in donation discussions, along with the interpersonal dynamics that influence these discussions. The first subcategory captured the communication skills and knowledge required to initiate discussions with patients. Discussions required communication skills, medical knowledge, rapport with the patient, knowledge of the patient, gentle character, empathy, fluency in sensitive conversations, and patience, with accounts of these characteristics often overlapping:

“They have to communicate effectively, be empathetic and listen to what I have to say rather than push their views.” (Patient 15).

The second subcategory captured the involvement of social support in donation discussions. It was recommended that either family, friends, or a substitute decision maker was present. While family members could impact the decisions of patients, and there was concern about this, it was indicated by patients that their decision was their own:

“No, my views are my views, so while my family can have their say I know what I want and don’t want.” (Patient 13).

The last subcategory captured the needs of patients during donation discussions. Participants explained that patients should be comfortable with the physical place they are in, the person they are discussing donations with, and their ability to control the conversation. They must also be cognitively able to make decisions and be accepting of their current clinical condition, otherwise the interaction may cause distress:

“There may be some patients who have lived with their disease for a long time and have accepted the outcome, these patients may be ok to discuss [donations] with. However, we also have lots of patients who are newly diagnosed and asking about this you can put a lot of pressure on them and cause distress.” (Nurse 10).

Category three: The timing, location and method of corneal donation discussions

The third category captured descriptions of the specifically mentioned preferred mediums, locations, people, and times to discuss corneal donations. The first subcategory captured the mediums through which donations could be discussed. Face-to-face was preferred, however, a combination of mediums including written information, telehealth options, videos, and models was desired:

“This will depend on a number of factors for me but if a topic like this was going to be discussed it may be worth giving a warning about it first so you could give some written information and then bring it up on a face-to-face visit” (Patient 7).

The second subcategory captured the different locations where corneal donations could be discussed. Palliative care units, and the homes of patients, were the most frequently mentioned locations. There was little agreement over where the best location was and participants further reported that discussions could occur in the community, outpatient settings, in general practice settings, and in private places:

“I think the place is not strict, I think as long as it is in a private area which is not heard by other people that will be the most important thing” (Nurse 10).

The third subcategory captured who should initiate corneal donation discussions. It was most frequently indicated that doctors should discuss corneal donations with patients due to their knowledge of the procedure. This was followed by nurses, organ donation groups, general practitioners, social workers, chaplains, and medical officers. Clinicians often described multiple professionals collaboratively utilising their specific skills to provide the best outcomes for patients:

“Nurses have the best ongoing relationship [with patients] so they would be ideal, with doctors or people from eye bank then coming in to answer any specific questions” (Doctor 5).

The fourth subcategory captured the times participants indicated were best to discuss corneal donations. Discussions were seen as best early in care, integrated as part of procedural processes either during the preparation of care plans or hospice admission:

“Given the fact there have been no conversations with me, a trigger would be needed so maybe when I had my ACD [advance care directive] discussion, that would have been an ideal opportunity, or even when I am discussing the goals of care when I come into hospital” (Patient 11).

Category four: The sensitivity of corneal donation discussions and potential for distress

While the third category detailed specific preferences for mediums, locations, people, and times to discuss corneal donations, the final category encompassed contrasting views on the approach to these discussions and the possibility of them causing distress. The first subcategory captured descriptions that depicted corneal donation discussions as events where any extra sensitivity is not required by those initiating the discussion. Participants indicated that discussions could be initiated by anyone, could occur anywhere, and at any time. Discussions could be seen as informal events, not requiring sensitive planning, and were no different from other clinical decisions:

“In my cancer journey I have had to make some difficult decisions around my care. I don’t see this as any more difficult than other issues I have faced. I am quite comfortable making these decisions” (Patient 9).

On the contrary, the second subcategory captured descriptions that indicated these discussions were sensitive and highly context dependent, requiring careful planning and timing. For participants who identified the discussion as sensitive, the specifics about planning these discussions were unclear. Participants referred to a nondescript “right time” and “right person” for these discussions:

“I would want the right time and person to discuss this with me, those would be my only issues” (Patient 8).

The third subcategory captured the potential for these events to cause distress for patients. While four clinicians viewed these discussions as posing no risk to patients, participants indicated that this was a potentially difficult topic to discuss. Discussing donations could be particularly distressing for younger patients and may cause patients to realise their own mortality:

“If I was the patient, I may feel a little unhappy as I am here for treatment, but this conversation may imply that I am dying and that am I being asked because you would like me to die quickly so that my cornea can be taken?” (Nurse 11).