A total of 25 patients were approached, of which 20 patients consented to be interviewed. Invitations were sent to the whole department at the three PCUs, and from these, 26 clinicians consented and were interviewed. Five clinicians were interviewed over the telephone; details of which PCUC were interviewed and where can be found in Table 1. Interview times ranged from 16-35 minutes duration with a mean time of 22 minutes. The most frequent life-limiting illness was breast cancer. Participant demographic data can be seen in Table 2.
Table 1
Breakdown of patient and clinician numbers across the three palliative care units
| Patient, n (%) | Clinician, n (%) |
| | Doctor | Nurse | Social Worker |
PCU 1 | 9 (45%) | 3 (30%) | 3 (27%) | 1 (20%) |
PCU 2 | 7 (35%) | 4 (40%) | 5 (45%) | 2 (40%) |
PCU 3 | 4 (20%) | 3 (30%) | 3 (27%) | 2 (40%) |
Table 2
Patient and clinician demographics
Clinician |
Gender (%) Male Female | 10 (38.4%) 16 (61.6%) |
Mean age (years) | 41.3 |
Mean palliative care experience (years) | 6.4 |
Patient |
Gender (%) Male Female | 9 (45%) 11 (55%) |
Mean age (years) | 68.2 |
Life limiting illness, n (%) Breast Cancer Pancreatic Cancer Bladder Cancer Endometrial Cancer Lung Cancer Metastatic Squamous Cell Cancer Prostate Cancer Leukaemia Myeloproliferative Disorder Cervical Cancer Renal Cell Cancer End-Stage COPD Colorectal Cancer Ovarian Cancer | 3 (15%) 2 (10%) 1 (5%) 1 (5%) 1 (5%) 2 (10%) 2 (10%) 1 (5%) 1 (5%) 2 (10%) 1 (5%) 1 (5%) 1 (5%) 1 (5%) |
Patient Themes
Themes that emerged from patient interviews are referenced in Table 3. Almost all the patients interviewed stated they would like to discuss corneal donation (94%) and donate their corneas (92%). A large majority of PCUPs (94%) thought the discussion would benefit them, but only 76% of clinicians thought it beneficial. Only 11% of patients were asked about corneal donations while being under the care of the palliative care team.
Table 3
Themes | Quotes |
Knowing and awareness | “I don’t know the full details of corneal donation – I know that someone will come and get the parts from me when I die” (Patient 1a) “I don’t know anything” (Patient 3a) “I don’t want to know more because I won’t even be here anyway” (Patient 7b) “I think my cancer would affect me donating, but I wouldn’t have a complete clue on that one. I think logically, if there is cancer in the body, then it can’t really be used by anyone” (Patient 4c) “I would have thought that people with cancer can’t donate any parts of their body. I thought that if so many parts of their body are diseased when they’ve got the spread of cancer, I just assumed there wouldn’t be anything that was useful” (Patient 6a) |
Altruism | “If I can help someone such as those involved in research or any people to see again, then it will be worthwhile” (Patient 3a) “Any part of the body that could be used to help someone else because it is not damaged in any way, I think is beneficial for everyone in general. This could be important for myself, my family and the recipient” (Patient 4b) “Personally, helping others would be the main reason – 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 6b) |
Choosing | “I do feel it is important, some people may get distressed by it, but others may surprise you” (Patient 5a) “If we are not asked, then we will never know” (Patient 5a) “My families’ views wouldn’t change my view on donating my corneas” (Patient 6a) “I had an experience which I regret really – I declined donating corneas when my sister-in-law died. Since then, I have really thought about how it could have helped others” (Patient 9a) |
Informing | “I feel discussing corneal donations important early on is not that important, but it is important to bring up at some point, maybe after building some kind of rapport with me” (Patient 2c) “I believe that once you have been diagnosed and you know the reason that everyone is helping you to make your life comfortable for as long as possible, I think in those moments is a good time to discuss those points” (Patient 6a) “Given the fact, there have been no conversations with me; a trigger would be needed so maybe when I had my ACD discussion that would have been an ideal opportunity or even when I am discussing goals of care when I come into hospital” (Patient 7b) I would like to have discussions at home about something so sensitive” (Patient 4a) “The palliative care unit is a very calm and peaceful environment, and so it would be naturally a good choice in terms of location to bring up a topic like this” (Patient 2a) I think the social worker would be the best person to discuss this with me, as they know me well and know all my wishes, but so do the doctors and nurses” (Patient 5b) “I would like a palliative care doctor to discuss this with me – I would say that I have a good rapport with my palliative care doctor, so that would fit in well” (Patient 1a) “I am old school; if you want to ask someone something, then the only way to ask is to look them in the eyes and ask them” (Patient 2c) “I would definitely like some written information on this, but the conversation through direct communication with another person is far more meaningful” (Patient 5b |
Skills required to discuss | “I do think that they have to have good communication skills and be empathetic, but also they have to know what is involved” (Patient 7a) “They should have a good broad knowledge of the area and good communication skills” (Patient 9a) “They should have a sound knowledge of the subject so they can answer any questions; they have to communicate effectively, be empathetic and listen to what I have to say rather than push their views” (Patient 3b) |
“I have never been asked about corneal donation in my time with palliative care, even on admission here” (Patient 2d).
“I don’t think it is something that we think of immediately in the chaos of what is going on” (Patient 1e).
Twenty per cent of clinicians interviewed expressed that they discuss corneal donation with their patients; however social workers ask more often than doctors and nurses. A higher proportion of clinicians want to ask about corneal donation (76.9%) but do not. Regarding knowledge, both patients and clinicians had limited knowledge of corneal donation, with only 20% of patients and 34.6% of clinicians having some form of knowledge on this subject. (Table 4)
Table 4
Comparison of patients’ and clinicians’ views on corneal donation
| Patient | Doctor | Nurse | Social worker |
| Yes | No | Yes | No | Yes | No | Yes | No |
Do they know about the processes? | 4 | 16 | 3 | 7 | 4 | 7 | 2 | 3 |
Have discussions ever been initiated? | 2 | 18 | 1 | 9 | 2 | 9 | 2 | 3 |
Is it essential/beneficial to discuss? | 18 | 2 | 6 | 4 | 7 | 4 | 5 | 0 |
Would clinicians like to ask, or patients like to be asked? | 19 | 1 | 8 | 2 | 7 | 4 | 5 | 0 |
Knowing and awareness
Many PCUPs reported that they did not have knowledge around the process of corneal donation (80%). Most knowledge was framed in terms of altruistic assistance to others. While most PCUPs wanted to know more about corneal donation, one did not want to know more as they “would not be alive”. Many PCUP (60%) thought their cancer diagnosis would mean they could not donate or were not entirely sure if they could.
Altruism
All the patients expressed their desire to “help” others through donation.
Choosing
All patient participants said they would like to discuss corneal donation, but they had not had the opportunity yet. Whilst some participants recognised that they could raise the subject, they did not know enough about it and felt it was possibly not crucial because the clinician did not. They also felt that their families should be involved. Most of the participants revealed that while it was important for them to be involved, their families’ decisions would not affect their final decision.
Informing – When, where, who and how?
There was a mixed response about when the discussion should occur, but the overwhelming majority stated it would be best once the patient had accepted the diagnosis. There was recognition that while it is a sensitive subject, rapport with the patient may alleviate this aspect. As long as no distressing symptoms were present, anytime would be reasonable. Interestingly two patients mentioned the advance care directive discussion as a trigger for this topic. Most patients would like to discuss it while an inpatient, but of the ones who suggested an alternative place, there was an approximately equal spread about those options. While 30% of patients felt the doctor would be the best equipped to initiate discussions, 60% felt other clinicians or someone they have a rapport with might be a better option. Ten per cent believed that it did not matter who had the conversation with them. However, 50% of participants felt that written, video and face to face information available should be used to initiate discussion about corneal donation, while 35% felt that face to face contact was preferred. (Tables 5,6,7.8)
Table 5
Patient and clinician views on the timing of the discussion
When is the best time to discuss this? | Patient | Doctor | Nurse | Social worker |
Early in illness | 2 | 3 | 4 | 1 |
After the patient has accepted their illness | 13 | 2 | 3 | 3 |
When having discussions around goals of care | 2 | 4 | 1 | 1 |
Towards the end of life | 3 | 0 | 2 | 0 |
Does not matter | 0 | 1 | 0 | 0 |
Never | 0 | 0 | 1 | 0 |
Table 6
Patient and clinician views on preferred site of discussion
The preferred site of discussion | Patient | Doctor | Nurse | Social worker |
Palliative care unit | 8 | 3 | 4 | 1 |
Outpatient department | 2 | 2 | 3 | 1 |
Home | 3 | 0 | 3 | 3 |
Other | 2 | 0 | 0 | 0 |
Does not matter | 4 | 5 | 1 | 0 |
Table 7
Patient and clinician views on a preferred person to initiate discussion
Is there a preference for who initiates the discussion? | Patient | Doctor | Nurse | Social worker |
Doctor | 6 | 1 | 4 | 2 |
Nurse | 5 | 3 | 2 | 2 |
Social worker | 3 | 3 | 2 | 0 |
General Practitioner (GP) | 1 | | | |
With whom there is best rapport | 3 | 1 | 3 | 1 |
Does not matter | 2 | 2 | 0 | 0 |
Table 8
Patient and clinician views on how to initiate discussion
Preferred mode of discussion | Patient | Doctor | Nurse | Social worker |
Face to face discussions | 7 | 4 | 6 | 3 |
Telephone | 0 | 0 | 0 | 0 |
Written literature | 3 | 0 | 3 | 0 |
All three | 10 | 5 | 2 | 2 |
Does not matter | 0 | 1 | 0 | 0 |
Skills required to discuss
Two common words that arose frequently in conversation was “communication” and “empathy”. There was also frequent mention that it is important that those who discuss corneal donation should have adequate knowledge about the subject.
Clinician Themes
Clinician themes that emerged are referenced in Table 9. Most of the clinicians appreciated how corneal donations could benefit others in terms of sight-saving and the donor by giving them a sense of purpose and a meaning to their death. The concept of “legacy” was raised frequently in discussions.
Table 9
Themes | Quotes |
Gatekeeping | “As long as they have an understanding about the benefits and reasons, then I think it would be great for the patient and people out there – there are a lot of people out there that would value donating their corneas for transplant or research” (Social worker 1a) “I think the way we approach our palliative care patients is to give them control and choices, and this would be another aspect of this. So, I think this is actually really appropriate” (Social worker 1b) “From the science point of view, it is a good opportunity to find out more on corneas via research, but from the patient point of view, there will be some patients who have too much going on and have so much distress in their journey and then having this discussion will put too much burden on them” (Nurse 3c) “We have lots of patients who are newly diagnosed and asking about this can put much pressure on them and cause distress. We could end up upsetting them more” (Nurse 2b) “Not really because I thought we were oversupplied with corneas. A few years ago, I notified the eye bank about a dying patient in ICU, and they said we have enough corneas and so said not to worry. Since then, I have not bothered with regards to this” (Doctor 3c) “I must admit I haven’t thought about what I feel” “I would want to know about the literature of what the patient perception is around this subject before I discuss something like this” (Doctor 2b) |
Knowing and awareness | “I am not familiar with the process of corneal donation but would like to know about it more” (Doctor 3a) “Building more awareness about this topic is important especially when a patient is cognitively aware and able to make decisions” “For me personally we have never had any education about it and maybe medical school is a good place to start” (Doctor 3b) |
Informing | “We should do it on admission or even in the community – give them enough time to think about it before the terminal phase. Early on in the illness is the best time to discuss this” (Nurse 2a) “I feel it is best to discuss this when we have built a rapport with the patient – when we know more information about the patient” (Doctor 2a) “Depends on the mindset of the patient - if they are accepting of their palliative condition. If someone can’t even accept dying, then that is not a good time” (Social worker 2b) “I probably sound a little old fashioned, but there must be a sense of what we know about the patient and their illness first; I would have thought it would be when the patient is in the incurable phase and probably at that advanced care planning stage” (Doctor 3c) “At least not when they are first diagnosed or when they are terminal phase. Probably when their symptoms are more under control, and they are past their denial stage” (Nurse 4a) “I think if you asked me 12 months ago, then often these conversations would be best face to face, but the last six months, I have used video telehealth a lot, and I would be comfortable to bring this up through this medium” (Doctor 3a) |
Skills required to discuss | “Communication is a big thing here, I believe, as well as empathy” (Nurse 3c) “They need to be knowledgeable and confident in sensitive discussions, so communication and being empathetic springs to my mind” (Doctor 2c) |
Barriers to discussing | “No concerns of raising this topic if it is well explained. However, some staff can be reluctant, so they need education – maybe they are scared to bring it up. The other concern is if it is dropped suddenly onto a patient without an explanation” (Nurse 4a) “I don’t bring it up myself, but for a long time, I would like the question to be put on an admission proforma. It’s a sensitive issue, and often there are a number of things that are happening on admission to a palliative care unit, and so this takes a back seat” (Nurse 2b) “I don’t bring up discussions myself – at the moment; it’s just not part of the culture or the admission process” (Nurse 3c) “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 2c) “If I am educated and exposed to the topic, then I don’t think I would have a problem; the key thing is education” (Social Worker 2b) |
“There is a benefit to the visual integrity of the person receiving the cornea. “There are also benefits to the patient – may give them a sense of purpose – other parts of their bodies may be deteriorating, but there are still parts that are of significant value to others” (Doctor 2a)
“I think a sense that the patient’s valuable organ could be useful and despite knowing that their life is limited, they can assist others to live better with improved vision” (Nurse 1a)
“We certainly know that a lot of people want to contribute, and patients will say if someone can learn something from my corneas, that will make them feel better” (Doctor 3b)
Gatekeeping
During interviews, some clinicians felt that it could be detrimental to discuss something so sensitive with patients and, for that reason, may not be beneficial to them. One doctor wanted to research the available literature of patient perception on this subject before they would broach it. Overall, clinicians felt it was in the best interests of the patient to have discussions. One doctor mentioned that he had actively brought this topic up previously but was told by the eye bank that they have enough corneas, so not to worry about this. This was a deterrent for him to bring up the topic.
Knowing and Awareness
Interestingly only a handful of clinicians were confident enough to discuss corneal donations with their patients (30%). One nurse was advocating for workshops and education around this topic within their department. (Table 4.).
Informing - when, where, how and who?
Doctors and nurses had divided opinions on when to raise the topic of corneal donation, with no clear majority option. However, 60% of social workers felt it was best to raise this after the patient had “accepted their illness”. However, there was a consensus that leaving it too late was not ideal either. One nurse and one social worker commented on initiating discussions during advance care directive preparation.
Half of the doctors interviewed believed that it did not matter where the discussion about corneal donation occurred. In comparison, nurses were divided about whether the best location was the palliative care unit, outpatient department or home. Social workers felt that home was the best place to discuss this issue. The majority of clinicians felt that face to face discussions was the best option; however, 50% of the doctors felt that a combination of written, video and face to face discussions would be ideal. Interestingly, most clinicians stated that their colleagues would be the best person to have the discussion, i.e., doctors felt that the nurses and social workers would be ideal; nurses felt doctors and social workers would be ideal. (Tables 5,6,7,8.)
Skills required to discuss
All clinicians felt that good communication such as active listening, non-verbal communication and clarity was vital. One third raised empathy and knowledge as additional skills required to discuss this topic.
Support required
All clinicians thought that with patient permission, family members, substitute decision-makers or next of kin being present at the conversation was a good idea.
Barriers to discussing
Clinicians considered that barriers to discussing corneal donation may be that patients were dealing with other more pressing issues, making this issue not relevant or not a priority. In addition, two-thirds of clinicians specified their lack of knowledge on the topic, thus creating a further barrier to discussion.