Table 4.
Data Extraction Summary
| Study ID | Study references Country, context |
Aims/purpose | Study design, participants | Data collection and analysis methods | Findings |
|---|---|---|---|---|---|
| 1 | Wells J, Sque M: Living choice: The commitment to tissue donation in palliative care. Int J Palliat Nurs 2002;8:22–27. United Kingdom, Palliative care setting |
To explore how nurses and doctors feel about tissue donation in palliative care | Grounded theory study Healthcare Professionals (HCP) (n = 8) |
Data collection: Semistructured interviews Data analysis: Grounded theory analysis |
Patients in palliative care should have the opportunity to be consulted about their wishes and expect to be informed and consulted about tissue donation. However, in units where donation was routinely discussed, participants generally consulted relatives rather than patients resulting in concerns that patients were not involved in decision making. Patients or family members “openness” to discussing end-of-life planning led to HCPs being more comfortable raising the option of donation. Discussing donation should be a multiprofessional role. Timing of the discussion is crucial to the outcome. A main concern was whether the request for donation and the donation process would cause the patients and families any physical or psychological harm. |
| 2 | Carey I, Forbes K: The experience of donor families in the hospice. Palliat Med 2003;17:241–247. United Kingdom, Hospice care setting |
To evaluate the experiences, attitudes and feelings of relatives who had consented to the donation of corneas of a loved one within a palliative setting | Semistructured interviews with 12 family members (carers/relatives) | Data collection: Semistructured interviews Data analysis: Framework analysis |
Awareness of eligibility Almost all participants were not aware that their deceased relative was eligible for donation and reported that they would not have reached the decision to donate on their own. Participants stated that they would have been distressed if they had not been given the option to donate and later realized, they could. Raising the topic of eye donation: discussions were initiated by nurses generally after the death of the patient. The timing and approach were acceptable to families although they felt it would have been easier if they had known beforehand. Participants views of eye donation: Most participants felt that donation was right and had a positive experience with the process and felt they had done something worthwhile. Social policy: 10 participants stated that the patient should make the decision about donation. All participants felt that there should be publicity and discussion about organ donation preferably before the person was faced with incurable disease or imminent death. |
| 3 | Gillon S, Hurlow A, Rayment C, et al.: Obstacles to corneal donation amongst hospice inpatients: A questionnaire survey of multidisciplinary team member's attitudes, knowledge, practice and experience. Palliat Med 2011;26:939–946. United Kingdom, Hospice care setting |
To explore the attitudes, knowledge, practice, and experience of corneal donation from hospice staff with direct clinical contact with patients | Survey shared with 704 clinical multidisciplinary team members in 12 hospices | Data collection: paper questionnaire with fixed response and free text option Data analysis: descriptive statistics and thematic analysis of free text comments |
70% (n = 291/418) of respondents perceived corneal donation to be a rewarding opportunity for patients and/or their families. 88% (n = 375/425) stated it was important that patients knew that they could donate. 43% (n = 118/427) (43%) indicated that corneal donation should be discussed routinely with eligible patients. 17% (n = 72/418) felt that discussing corneal donation would be too distressing for a patient and/or their family. 37% (n = 156/422) were not sure whether they were comfortable enough to start a conversation about corneal donation with a patient or a family member. 34% felt that it was part of their role and 39% (n = 161/421) felt that it was someone else's role to raise the issue of corneal donation with patients and/or their family members. 93% (n = 399/431) rarely or never raised the option of eye donation. Key reasons for not engaging in discussions were: Concerns about the impact of the discussion on patients and families A belief HCPs lacked essential knowledge, about the process of eye donation. A perception that donation is not part of hospice culture. |
| 4 | Kuo S, Chou P, Liao Y, et al.: Perspectives of decision-making for corneal donation: A qualitative research among cancer patients. OMEGA J Death Dying 2018;0:1–8. Taiwan, Palliative care setting |
To identify the views of terminal cancer patients toward corneal donation | Exploratory qualitative study with 25 cancer patients | Data collection: Semistructured interviews Data analysis: content analysis |
Key findings were that: Participants felt that the issue required family members to indicate their preferences. Participants preferred to maintain their bodies intact because of the deeply held beliefs that the body must remain intact after death. Participants believed that corneal donation was against their Buddhist religious beliefs as they believe that the body should be untouched for eight hours after death. Participants also believe that spirit should be able to see and, therefore, eyes should not be removed. |
| 5 | Walker L, Neoh K, Gilkes H, Rayment C: A qualitative study using semistructured interviews of palliative care patients' views on corneal donation and the timing of its discussion. Palliat Med 2018;32:1428–1437. United Kingdom, Palliative care setting |
To understand views and feelings of patients in palliative care settings toward corneal donation. | Exploratory qualitative study with 9 patients | Data collection: Semistructured interviews Data analysis: Thematic analysis |
Patients' baseline knowledge was very limited and most did not know anything about corneal donation before the study. Altruism was a key influence, patients felt positive about being able to help someone else. Eyes were not perceived as being different to other organs and participants valued sight and felt it would be important to help someone see again. All participants acknowledged the role played by their family in decision making and were keen to involve them. Participants felt they would prefer to talk about donation when they were well rather than when vulnerable and close to death. Participants felt discussions about donation was a covert way to tell someone that they were dying. Participants were open to discussing donation with healthcare professionals and felt it would be easier with someone they already had relationship with. Although participants said they did not know anything about donation, they, however, felt they would not be eligible to donate. Some thought they could pass on their cancer if they donated. |
| 6 | Ng I, Astle J, Tregenna E, et al.: Health services and policy. Future Healthcare J 2019;6:s38. United Kingdom, Hospice care setting |
To assess factors that influence corneal donation within the palliative care service | Survey of 37 HCPs and 11 patients Retrospective note review of 84 deceased patient records 2016 |
Data collection: Retrospective note review Questionnaire (developed by Gillon et al.) distributed to healthcare providers in 2014. Questionnaire to patients admitted to the service between June and August 2015. Data analysis: descriptive statistics. |
Results of retrospective note review: 85 deceased patients' notes were reviewed against eye donation criteria. Of these 35% (n = 30) were judged to be eligible for corneal donation with a further 11% (n = 10 patients) potentially eligible. Results of survey healthcare professionals: 92% (n = 92) of respondents never or rarely raised the subject of corneal donation with patients or relatives. 76% (n = 76) of respondents had not received any information or training regarding corneal donation. 81% (n = 81) of respondents felt they did not know enough about corneal donation to discuss it with patients or relatives. Knowledge and training were identified as significant barriers to raising these discussions. Results of questionnaire with inpatients: 6/11 (54.5%) participants had not heard of corneal donation and all were either glad or neutral about being informed about corneal donation. 8/11 (73%) participants did not find it upsetting to discuss corneal donation and the remaining 3/11 (27%) indicated although they found it upsetting, they would rather have a conversation than not. Patients' decisions about donation changed after discussions of eye donation. Before discussion none of the patients were planning to donate their corneas, whereas after the discussion 7/11 (64%) were planning to donate. |
| 7 | Niday P, Painter C, Peak J, et al.: Family and staff responses to a scripted introduction to tissue donation for hospice inpatients on admission. Prog Transplant 2007;17:289–294. USA, Hospice care setting |
To implement and evaluate a change in practice to offer information about tissue donation as part of admission process | Service evaluation-written logs of 12 healthcare providers | Data collection review of nurses' logs | Comments on nurses' logs indicated no concerns from patients and families to receiving information about donation at admission. There was less frustration from families at the time of death and introduction of donation Nurses were more positive about introducing the option of donation at admission compared with when donation was introduced at the time of death. Nurses' logs confirmed that patients and families were not aware that they could donate. Corneal donation increased by 250% during a six-month period from 2 out of 32 eligible corneal donors to 7 out of 34 eligible donors. |
| 8 | Tredget K, Ward-Davis L: Responding to the public's voice: Changing cornea donation practice in a hospice (Letter to the editor). BMJ Support Palliat Care 2017;0:1–2. United Kingdom, Hospice care setting |
Service evaluation of the introduction of personalized plan of care for dying patients that included the option for tissue and organ donation | Service evaluation reporting outcome of retrospective note review, staff survey of 14 HCPs. Telephone interviews with five family members |
Data collection: questionnaire with HCPs Retrospective note review Telephone interviews with family members of deceased hospice inpatients Data analysis: Descriptive statistics |
Findings from questionnaire with HCPs 12/14 (86%) of doctors felt that discussing eye donation did not cause additional distress to patients. 8/14 (57%) of doctors reported that the discussions had been helpful to patients and families as donation provided an opportunity to give something back and enabled a positive outcome from the death. Note review: On average 240 deaths occurred each year at this hospice. Before 2015 no patients had been referred for eye donation. 67/77 (87%) were eligible to donate. 34/67 (51%) of eligible patients' relatives were approached about donation before the patient's death. 15/34 (44%) of those invited to consider donation subsequently donated their corneas Reasons for non-discussion of eye donation Speed of deterioration, concern about exacerbating already significant distress and lack of clinician clarity on eligibility criteria were common reasons. Reasons for declining donation Previously expressed wish by patient not to donate or family's uncertainties about the patient's wishes were reasons for decline. Findings from telephone interviews: Interviews with deceased relatives indicated that relatives felt it was acceptable to raise the option of donation and felt that it did not add to their distress. |
| 9 | Roach R, Broadbent AM: Eye donation in Sydney metropolitan palliative care (Letter to the editor). J Palliat Med 2009;13:121–123. Australia, Palliative care setting |
To identify factors contributing to low rate of eye donation from palliative care unit in Sydney metropolitan area | Retrospective audit of 2000 deceased patient records | Data collection: Retrospective note review Data analysis: Descriptive statistics |
2000 deceased patients' notes were reviewed over a one-year period. 50 (2.5%) patients became eye donors. Donors came from only four out of the nine palliative care units (44%) Two (22%) units provided 90% (n = 45) of the eye donations. Palliative care units do not appear to discuss or promote eye donation with patients or their families. |
| 10 | Gillon S, Hurlow A, Rayment C, et al.: Eligibility for corneal donation within the hospice population (Letter to the editor). Palliat Med 2010;24:551–552. United Kingdom, Hospice care setting |
To quantify percentage of inpatients eligible to donate corneas and number with whom donation is discussed | Observational retrospective note review of 100 deceased patient records (September–December 2008) | Data collection: patient note review Date analysis: Descriptive statistics |
100 deceased patients' notes were reviewed. There were no contraindications to eye donation for 52 patients (52%), whereas 15 (15%) had definite contraindications. No documentation regarding discussion of corneal donation was recorded. |
| 11 | Stiel S, Hermel M, Radbruch L: Cornea donation from patients deceased at a palliative care unit (Letter to the editor). Palliat Med 2010;25:183–184. Germany, Palliative care setting |
To assess the potential for corneal donation and the relative rate of actual donation | Observational retrospective note review of 704 deceased patient records | Data collection: Review of patient electronic records Data analysis: Descriptive statistics |
704 deceased patients' notes were reviewed between 2003 and 2009. 229/704 (32.5%) patients were potential donors 112/704 (49%) patients gave consent for cornea donation |
| 12 | Edwards P: Corneal donation within palliative care: A review of the literature. Int J Palliat Nurs 2005;11:481–486. United Kingdom, Palliative care setting |
To examine whether the option of donation is being offered in a systematic manner To explore the moral dilemmas involved in corneal donation and the implications for nursing practice and research |
Literature review in Medline and Cinhal databases | Data collection: Review of studies covering period 1995–2005 Data analysis Thematic analysis |
Findings from literature review Corneal donation is rarely offered. Cumulative findings indicated that family members were surprised that their relative could donate. Family members would have been distressed if they had not been offered the option to donate and found out later that this could have been an option; low numbers of family members raise the issue of eye donation. Families felt that donation did not have any effect on their bereavement. Family members desire to fulfil deceased wishes, give meaning to the death and the families' own views about donation influenced donation decisions. Healthcare professionals often do not raise the issue of corneal donation, often they just respond to requests by patients or family members. |
| 13 | Spencer M: The barriers to organ and tissue donation in palliative care. End Life J 2012;2:1–11. United Kingdom, Palliative care setting |
To explore the involvement of palliative care patients in decisions about donating their tissues To explore why families may be reluctant to consent to donating organs/tissues of deceased loved ones To explore why nurses are wary of discussing the possibility of donation with patients and/or their next of kin |
Literature review in British nursing index, CIHAHL, MEDLINE, Embase and PsycINFO | Data collection: Review of the literature with no date limits Data analysis Thematic analysis |
Findings from literature review There is no consensus among palliative healthcare professionals about whether and/or when patients should be involved in discussions about donation. Patients often spontaneously discuss end-of-life matters such as their funeral arrangements, their will, and expectations for the time they have left, but they rarely spontaneously discuss organ or tissue donation. Introducing donation discussions increased donation rates. Patients should be given appropriate information to enable them to make choices about donation. Knowing the wishes of the deceased regarding donation influences next of kin donation decision making. Healthcare professionals find it challenging to talk about donation even though they frequently have difficult discussions about death and dying. HCPs are fearful of the reaction of patients and families to the request for donation. The attitudes of healthcare providers influence their practice, those with negative views and less knowledge about donation are less likely to discuss it compared with those who are positive and have more knowledge. |
HCP, health care provider.