Perspectives of Decision-Making for Corneal Donation: A Qualitative Research Among Cancer Patients

Abstract

This study investigates the subjective experiences of terminal cancer patients who expedite their corneal donation decisions. The percentage of cancer patients who donate their corneas postmortem is low in Taiwan. The reasons are complex and needs further exploration. A qualitative design using content analysis was used. A semistructured interview approach was adopted to interview cancer patients recruited from a cancer ward in northern Taiwan. The study findings show that the factors contributing to an aversive preference of cancer patients included the necessity to consider the emotions of family members, traditional perceptions, religious reasons, disease, and no reason at all. Most cancer patients maintain a negative stance toward corneal donation. The results obtained in the present study can be used as a reference for future in-service education and promotional efforts regarding corneal donation. Discussing cornea donation needs to become a routine end-of-life care discussion.

Keywords

cancer patient culture death corneal donation qualitative research

Introduction

The number of corneal tissue donations worldwide is in a deficit (Gillon, Hurlow, Rayment, Zacharias, & Lennard, 2010; Gillon, Hurlow, Rayment, Zacharias, & Lennard, 2012; Kumar, Kumar, Bali, & Tandon, 2012; Lawlor & Kerridge, 2011). Unfortunately, the same condition exists in Taiwan. As of March 2017, total corneal donations in Taiwan were 105 with a reported demand of 612 (Taiwan Organ Registry and Sharing Center, 2017a). At one university hospital in Brazil, a donation rate of 25% was reported for 2006, while a donation rate of 34% was reported for 2009 (Fernandes, Soares, Boin, & Zambelli, 2010). In Germany, one corneal donation study found that 5.1% of deceased patients at the University Hospital of Cologne made corneal donations during a 5-year period (Schaub et al., 2016), while another study reported that 13.9% of deceased patients at another hospital made corneal donations during a 4-year period (Röck, Wude, Yoeruek, Bartz-Schmidt, & Röck, 2016). In addition, an eye-donation study conducted in the United Kingdom found that 111 deceased patients out of 2,213 total deaths in 2010 at all the hospitals in Newcastle became eye donors (Ting, Jones, Lawther, Armitage, & Figueiredo, 2015). In Taiwan, meanwhile, 483 pieces of cornea from deceased patients were donated in 2016, a year in which a total of 172,418 people died, with 47,760 of those people dying from cancer (Taiwan Organ Registry and Sharing Center, 2017b). However, the number of corneal donations is relatively low in Taiwan when compared with other countries. The number needing cornea donations is far higher. Therefore, shortage of donor cornea tissue is an important issue. Why is there not enough cornea donations? The reasons for this are complex and relate to numerous influences, including deep-rooted Confucianist ideals maintained by the people of Chinese ethnicity (your body is given by your parents and it should not be damaged), a lack of explanation from medical personnel (Gillon et al., 2010, 2012; Roach & Broadbent, 2010), the health of the donor (Verble, Darcy, Penta, & Worth, 2013), the attachment of family members to the patient (Kumar et al., 2012; Verble et al., 2013), the preservation of the body postmortem (Fernandes et al., 2010; Verble et al., 2013), and ethics, among others. Also, folklore suggests that people experience agony when the spirit leaves the physical body and that the removal of the corneas will hinder the spirit to find its way home (Lawlor & Kerridge, 2011). Therefore, the number of corneal transplants obtained from postmortem organ donations is relatively low and corneal donation itself is difficult to promote and implement.

Corneas are the only tissue suitable for donation by patients with cancer. However, the precise number of cornea donations by terminal cancer patients has yet to be accurately identified. In western countries, the source of corneas for transplantation may be derived from the donations of cancer patients (Forbes, 2003; Stiel, Hermel, & Radbruch, 2011). According to a specific cancer ward in Taiwan, only nine terminal cancer patients had agreed to donate their corneas in a 3.5-year period, but only three of them successfully donated. The reasons for donation failures in the remaining patients included one case of a Hepatitis B carrier; two cases of poor cornea quality diagnosed by an ophthalmologist, who advised against corneal donation; two cases of refusal by family members; and one case of donation withdrawal by the patient. Thus, success rate of the donation was 33.3% (3/9; Wei, Chen, Fong, & Lin, 2008). Therefore, encouragement mechanisms for cornea donation from cancer patients require urgent establishment. In addition, the reasons for donation aversion and the feasibility of response strategies should be further investigated to contribute to the establishment of donation models. Prior to establishing these models, the views of terminal cancer patients pertaining to corneal donation should be comprehensively examined to identify the critical factors that influence their decision-making processes. Thus, the present study endeavors to identify the views and factors of terminal cancer patients that influence their corneal donation decisions.

Methods

Research Design

The present research adopted a qualitative research design. A semistructured questionnaire was devised to conduct face-to-face interviews with the research subjects and determine their views relating to corneal donation. Subsequently, a single trained interviewer collected participants’ corneal donation preferences.

Prior to confirming the interview guidelines, the researchers of this study initially performed open interviews with two qualified participants to understand their views and feelings toward cornea donation. Consequently, the preliminary clinical subjective experiences collected from the participants and related concepts of the extant literature were used as a basis for devising the semistructured interview guidelines. The appropriateness of the guidelines was then provided to medical and research teams for discussions, which then produced two open-ended items that were used to guide the interviews. These items consisted of the following: “What are your views towards corneal donation?” and “What reasons influence your views toward corneal donation?” Each interview commenced for approximately 20 to 30 minutes with the guidelines used to aid the participants in providing their views and influential factors pertaining to cornea donation. Following the completion of each interview, the collected data were transcribed and analyzed until two consecutive participants provided repetitive content. This repetition denoted that the data achieved saturation and further interviews were not required.

Recruitment and Patient’s Selection

Using a purposive sampling method, the present study used a cancer and palliative ward of a medical hospital in Northern Taiwan as the location for research. The research subjects were terminal cancer patients who were receiving palliative care or chemotherapy. The inclusion criteria for the cancer patients were as follows: (a) above the age of 18 (incl.), (b) life expectancy less than 6 months, (c) conscious, (d) able to communicate in language, (e) mentally and emotionally stable, and (f) agreed to participate in the interviews.

In a sampling period that extended from February to July 2012, a total of 35 cases were referred, and 25 were successfully recruited. Among the 10 failures, 5 cases refused to participate, 2 found it difficult to communicate in Hakka language, and 3 were unable to complete the interviews due to excessive fatigue. After interviewing 23 cases, the researchers found that no novel information was further collected. Thus, two additional cases were interviewed for a total of 25 cases. The participant rate was 71.42%.

In these participants, 64% were men; the average age was 52.08 ± 10.91 years; 56% believed in Buddhism or Taoism; 64% graduated from high school or above; and 64% were hospitalized for palliative care purposes. Table 1 details the patient demographic data.

Table 1.

Demographics Data of Subjects (N = 25).

Patient’s characteristics	n	%	Mean	SD
Sex
Male	16	64.0
Female	9	36.0
Education
≤6 (years)	5	20.0
7∼9 (years)	4	16.0
10∼12 (years)	10	40.0
>13 (years)	6	24.0
Religion
None	6	24.0
Buddhism/Taoism	14	56.0
Christian	5	20.0
Marriage
None	10	40.0
Married	13	52.0
Divorce/widows	2	8.0
Purpose of hospitalized
Palliative care	16	64.0
Chemotherapy	9	36.0
Age			52.08	10.91

The Recruitment Process

The research plan was executed following the review and confirmation of the hospital’s institutional review board. The medical professionals were responsible for the initial communication with the patients to obtain their consent to participate in this study. The patients who agreed to participate were then referred to a trained researcher who provided the participants with the research objective and relevant procedures. In addition, the researcher further explained to the participants that interviews would be conducted anonymously during the interview process. The participants formally underwent interviews after providing written consent. Participants could stop the interview or withdraw from the research at any time if they felt uncomfortable. Furthermore, when a given face-to-face interview had finished, the medical professionals would take over to provide care for the participant in terms of his or her mood, feelings, and other responses.

Data Analysis

The data interviewer transcribed the recorded interviews within 3 days with the help of two research assistants. Then, one researcher was appointed to reconfirm the accuracy of the transcripts. The interview recordings were transcribed into textual statements. The first and second participants who were interviewed then reviewed the interview recordings and textual statements. Both of them agreed with the statements and confirmed the authenticity of the transcripts. Subsequently, a content analysis approach was adopted to analyze the experiences of the participants. Content analysis is a content reduction method and can be a qualitative and a quantitative method (Roller & Lavrakas, 2015). In this study, a conventional qualitative content analysis was employed to analyze the written texts. The data were obtained via the in-depth face-to-face interviews. The research team comprises professionals from a range of diverse disciplines, including nursing scholars, clinical nurse specializing in hospice care, and oncologist hospice doctor. All the textual statements were analyzed by the three authors (S. C. K., J. L. S., and Y. C. L.). First, the patient statements were condensed into codes. Second, the codes were categorized. Finally, themes were used to represent similar categories.

J. L. S. developed an agreement-score checklist and each theme was scored from 0 (no agreement) to 3 (strong agreement). The total number of themes was 13, and the scores ranged between 0 and 39; the higher the score, the higher the level of agreement indicated. The others authors (P. L. C., J. F. C., and Y. F. C.) reviewed the textual statements and ticked off the various themes using the agreement-score checklist. The scores were 35 to 39 at the initial stage. All authors discussed the data and were appointed to systematically analyze piece of data with inconsistencies. The final categories achieved 100% consistency when all authors agreed the decision. To avoid any misuse of language, this manuscript was subjected to professional translation and editing by native speakers of English. Then, all the authors reviewed the final draft of the manuscript.

Results

Fifty-six percent of the participants were unwilling to donate their corneas. To realize the steps of the data analysis and reduction, an example of the analysis process is given in Table 2. Based on the interview results, the following were the reasons for patients’ unwillingness to donate their corneas: (a) the necessity to consider the emotions of family members, (b) the traditional concepts, (c) the religious concepts, (d) the disease, and (e) no any reason: just did not want to (Table 3).

Table 2.

Examples of the Data Analysis Procedure, Including Patients Quotations, Codes, Categories, and Theme.

Subtheme	Personal willingness: This is not my business.	Said no directly	Emotionally refused to discuss donation.	Ambiguous say no	It is not the time.
Theme	No any reason: just did not want to
Category	– Self-exclusion – Unconcerned	– Decline – No – Negative remarks	– Death mood – Negative emotions	– Indirect say no – Oblique remarks – Circuitous remarks	– An unsuitable time – Untimely discussions
Code	– For young people – For victims of accidents – Unfamiliar topic – Uninterested discussion –Boring issue, meaningless.	– Refusal – Unwilling – Disapprove – Impossible – Not consider	– Depressed for waiting death – Unhappy, unset, angry	– Revealing unwillingness through their remarks – Reluctant to demonstrate this unwillingness – Perfunctory response	– Inappropriate time – Appropriate for close to dying
Example of patients’ quotations	“I have never heard of such a matter. This is unclear to me and I do not understand. I feel that this does not concern me.” (patient 4)	“I don't have a plan of donating my cornea.”(patient 13) “I do not want to donate my corneas.” (patient 12)	“Honestly, I am near to death, particularly with this type, which is extremely depressing. I don’t know which day I will die. I am waiting to die because of this disease. So do not discuss donations with me.” (patient 11)	“It would be a great idea to do so. However, my health condition is declining. So even if I want to donate my corneas, I think no one will want them.” (patient 9)	“Why are you asking me that question? That question is only applicable for a dying person.” (patient 7)

Table 3.

Reasons of Patients’ for Unwillingness to Donate Corneas.

Theme

1. The necessity to consider the emotions of family members

2. The traditional concepts

3. The religious concepts

4. The disease

4.1. Symptom distress

4.2. Infectious diseases

4.3. Eye disease

5. No any reason: just did not want to

5.1. Personal willingness: this is not my business

5.2. Said no directly

5.3. Emotionally refused to discuss donation

5.4. Ambiguous said no

5.5. It is not the time

Theme 1. The Necessity to Consider the Emotions of Family Members

Eight patients indicated that this issue required the consideration of family members’ preferences. They asserted that they required the consensus of their family members regardless of their intentions. Although the patients understood that they were responsible for their bodies, they were reluctant to independently make decisions. This was particularly apparent in elderly patients who relied on their sons and daughters. They insisted on discussing their postmortem arrangements with their children, so as not to cause them trouble. Participant 12 asserted:

I have to consider the emotions of my family because I am relying on my son … I have to consider the opinions of my son and gain the consensus of my family. I value their opinions most of all.

Actually, the patient had not opened discussions with the family members regarding this matter, believing that they would not be supportive, because of an excessive number of family members, consensus could not be achieved. Participant 6 asserted:

When the time comes, I am not responsible for such a decision because this matter requires the support of my family. But I know, my family will not be supportive.

Theme 2. The Traditional Concepts

Thirteen participants preferred to maintain their bodies intact. The deeply rooted traditional concepts of people of Chinese ethnicity hold that the body should remain intact following death, particularly the bodies of the elderly members of the family. Numerous participants also mentioned ethnical issues and considered that the concepts of the Hakka people were comparatively more conservative. Participant 7 asserted:

We (the Hakka ethnicity) are more conservative. They wouldn’t consider such as request, nor would they mention it. I feel that people should be fully preserved after death. My mother, for example, could not even accept cremation after death. In the ideals they hold, they believe that people should be buried after death. They believe that the spirit would not be able to reunite with our ancestors because the body is burnt black following cremation. That is why they insist on being buried. Not to mention the absence of a body part. Do you think they would allow this?

Several participants also believed in reincarnation and that a portion of the consciousness remains after death. They believed that the deceased required their organs following death. Participant 3 asserted:

Traditionally, a previous way of thinking. We are human, after all. If you deprived him of his corneas, then he would think ‘Then I will be blind after death.’ We are all bound by tradition to some extent.

Other participants believed that cornea donation is a violation of Chinese filial piety. They believed that donating the body after death is disrespectful to their parents and ancestors. Chinese beliefs are based on Confucianism, which subsequently holds filial piety as the foundation for human beings. According to an ancient manuscript called “Classic of Filial Piety,” Confucius expressed to Zengzi, “We got our bodies from our parents; and do not dare to hurt ourselves. This is the beginning of filial piety.” From this quote, it can be inferred that preserving the completeness of the body after death is the basis of filial piety. Participant 11 asserted:

Because we hold the ideals of tradition similar to the preservation of the body, hair, and skin, the donation of the body after death is disrespectful to our parents and ancestors. Giving something that your parents had given you to someone else, I feel that this is not acceptable.

Theme 3. The Religious Concepts

Six participants believed that corneal donation is against religious doctrine. Participant 10 asserted:

Religion is also a factor. My family believes in Buddhism. From a Buddhist’s perspective, many people contend that the donation of the body or organs is unacceptable. That is, near death, when the spirit is prepared to leave the body, the world becomes confusing. When your organs are removed during that period, the spirit will formulate negative ideas, such as greed, hatred, and ignorance. In other words, the body should be untouched for 8 hours following death. This is the critical period in which the spirit leaves the body. In Buddhism, ‘movement’ is prohibited.

In addition to moving the body, other participants considered the afterlife or the concept of reincarnation. They believe that life and death is an endless cycle; and that death is only the destruction of the physical body. The process of death is merely a way in which life is reconstructed in this world or another. Participant 2 asserted:

Religion is a factor to some extent, and the concepts of Buddhism or Taoism have been taught to us since we were little. We believe in the concept of reincarnation. Death is only a representation of the heart beat stopping and the spirit leaving the physical body. The organs on the body do not disappear. Thus, no flaws to the body are preferred. When donating corneas, the membrane on the eyes is removed, and the spirit would not be able to see. When removing the eyes, you would not be able to walk that road. Oh! For example, the Naraka which a road toward to death. Walking down that road, you would be unable to see.

In addition to Eastern religions, Western religions, such as Christianity, also believe in the concept of the afterlife. Participant 5 asserted:

Christians believe that people will gather and reunite. Thus, we should maintain completeness. Although the physical body will be disposed, we should not hold destructive ideals. The Lord gave each of us a complete body, so we should not destroy it. When we arrive in heaven, we will be reunited with our parents once more. Being confined to our bodies, we would feel more consoled returning to Him with a complete body. Returning to the Lord with a complete body would make us at ease.

Theme 4. The Disease

The diseases of the patients restricted their willingness to agree to corneal donation. Issues caused by the diseases included the symptom distress caused by cancer, by having an infectious disease, and by having an eye disease.

Theme 4.1. Symptom distress

Prior to engaging in cornea donation discussions, the symptom distress for terminal cancer should first be relieved. Otherwise, this discussion would be obstructed. Numerous cases were unable to comprehensively discuss cornea donations and most of their statements involved their extant sufferings. Participant 1 asserted:

This type of cancer is constantly painful, and stiffens with radiotherapy. When an area swells, it compresses inward, and rots away the inside. It continues to consume inwardly. My neck is very stiff (a side effect of radiotherapy).

Theme 4.2. Infectious diseases

Participants were concerned that their disease might infect the recipients. For example, patients with Hepatitis B are not suitable for donations. However, undiagnosed patients or patients who were free from infectious diseases were also concerned with infecting recipients. Participant 9 asserted:

I do not know anyone who had engaged in donations, and am not familiar with the relevant safety issues. I also do not know if I am carrying any pathogens, and whether they might genetically be passed over to the next patient.

Theme 4.3. Eye disease

Five participants used eye disease as a reason for their unwillingness to donate their corneas regardless of the absence of an ophthalmologist’s diagnosis concerning the suitability of their corneas. Participant 7 asserted:

Because of my age, my organs are in poor condition. Even if I am willing to donate, people might not want to accept. For example, I am near and far sighted and have astigmatism. With eyes like these, would there be someone willing to accept? In addition, I am a cancer patient. My organs would not be apt for donation. The recipients will be infected. Nobody would want these organs.

On clarification, the interview oriented around corneal donation and not organ donation, the participant further asserted:

I have poor eyesight. The quality of my eyes is poor. I am near and far sighted, and have astigmatism. I am almost blind. What would they want with my corneas? My eyes are deteriorating, donating them would be pointless.

Theme 5. No Any Reason: Just Did Not Want To

Although agreeing to participate in the interviews conducted in this study, nine participants felt unconcerned or uninterested with the topic of discussion, excluding themselves. Simple remarks, such as “unfamiliar topic,” “unfamiliar with others engaging in donation,” “donations are for young people or victims of accidents,” “donation is meaningless,” “poor health for donations,” “I don’t understand,” “donation is not an easy task,” and “this is boring” were often provided; or participants remained silent and refused to provide an opinion.

Theme 5.1. Personal willingness: This is not my business

Patients did not voice an interest or willingness. Participant 7 asserted:

I feel that matters concerning donation are for young people. Donations are more suited for those unfortunate young people. That is to say, we are old. Generally, donations provided by young people who are victims to fatal accidents would be more meaningful. I am over 50; donations by me would be meaningless.

Theme 5.2. Said no directly

Eight participants provided direct negative remarks concerning the discussed issue, such as “just not willing to,” “no answer,” “no means no,” “unwilling,” “my characteristic trait,” “I disapprove,” and “In my opinion, this is impossible.” Participant 7 asserted:

Actually, I have never thought of this to be truthful. I will not change my mind. This is a personal characteristic. I refuse. No matter how positive you make it sound, or how complete the donation is, I do not want to hear about it, and I will not change my mind.

Theme 5.3. Emotionally refused to discuss donation

Numerous participants were in the anger stage of the cancer process. They considered themselves to be near death and felt that cornea donation discussions were meaningless. Participant 8 asserted:

Ask a willing cancer patient to donate. I am unwilling and cannot donate. I am near death and not in the mood to think of donations. I will not . . . no . . . no. Because I am extremely depressed; a cancer patient waiting to die. Asking to me to donate something, it’s all a lie.

Theme 5.4. Ambiguously said no

The unwillingness of the participants could be inferred through their remarks. However, they were unwilling to demonstrate their actual preferences. People of Chinese ethnicity are circumspect in providing negative answers. Although the participants understood the value of cornea donation, they were unwilling to donate their corneas and were reluctant to demonstrate this unwillingness. Thus, they became ambivalent toward the topic by telling the interviewer that they approved of cornea donation, but refrained from related discussions. Participant 3 asserted:

The question you have asked is interesting because wanting to donate and the willingness to donate are very ambiguous situations. Donation can be metaphorically expressed as follows: You asked me whether I would donate my cornea, which is personal. I would like to know whom I would be donating to. If it were my family or friends, then I would be willing.

Theme 5.5. It is not the time

Five participants considered that their conditions were not at the point to discuss such issues. They felt that the timing was inappropriate and that this discussion was more appropriate for patients near death. Participant 7 asserted:

I have yet to muster the courage to face death, and have not considered problems to this extent. I do not particularly ponder this topic. In actuality, when I finally become severe, then I would not want to say anything.

Discussion

The reasons that cancer patients do not want to donate are complex. All the reasons accumulate to cause a shortage of corneas for transplantation. In previous research, a survey identified the factors influencing cornea donation decisions to be surgery concerns and the disfigurement of postmortem bodies (Verble et al., 2013), religion (Gelaw & Ambaw, 2010; Lawlor, Kerridge, Ankeny, Dobbins, & Billson, 2010; Verble et al., 2013; Yew et al., 2005), eye or health conditions (Verble et al., 2013), the premortem intentions of the donors (Carey & Forbes, 2003; Lawlor et al., 2010), and a lack of organ donation information provided by medical personnel (Forbes, 2003; Gillon et al., 2012). Our study results were also congruent with previous results, but there were some differences.

Wang, Hsieh, Chang, Lin, and Wang (2012) analyzed the influence of failure on organ transplantation. The primary reasons given were personal factors as gathered from 2006 to 2010. The method of cornea removal was an influencing factor. Widespread donations were also less willing to donate rather than only the removal of the corneas (Lawlor et al., 2010). Widespread donations influenced postmortem body appearance. This view was somewhat different than that of the patients in our study. In our study, the participants emphasized that keeping the body intact after death was an important consideration in Chinese culture. In addition, disfigurement was significantly associated with an unwillingness to donate. A survey conducted on 371 Australian adults to investigate their views on corneal donation revealed that 47% of the respondents were concerned with the disfigurement of their postmortem bodies (Lawlor et al., 2010). The most common reason given was that the body should remain whole. As such, perhaps the number of corneal donations could be increased in the future by only excavating the corneas themselves or by restoring the orbital cavities of the donor.

Corneal donation is comparatively more difficult to promote than general organ donation because of beliefs related to needing the eyes and they function as a metaphor for vision (Lawlor & Kerridge, 2011). The same view was expressed by the patients in our study. An old Chinese saying goes “The eyes are the windows of the soul,” which states that “Without the eyes, spirits cannot find their way home.” Thus, the soul require eyes to guide them into heaven.

Religion is also a factor for patients. A survey conducted on the cornea donation preferences of university students and in-service professionals showed that their religious beliefs played a significant role in their attitude (Gelaw & Ambaw, 2010). Those without a preference for religion were more likely to donate (Lawlor et al., 2010; Yew et al., 2005). The cornea donation to blind people is a good deed and the doctrines of orthodox religion often hope humanity to have good hearts and enthusiasm attitudes. However, there is a little bit contradictory opposition in our study. Therefore, we can further understand the views of cornea donation on different religions.

The study showed that increasing age accompanied a decreased willingness for cornea donation (Chou et al., 2012; Lawlor, Dobbins, Thomas, & Billson, 2006; Palamar, Durusoy, Egrilmez, Salis, & Yagci, 2011). The present study found that terminal cancer patients typically demonstrated negative opinions pertaining to cornea donation and possessed deeply rooted ideals by expressing a strong unwillingness to donate. The results regarding age obtained in the present study were similar to those proposed by Chou et al. (2012), which asserted that the increased age of the patients increased the unwillingness to discuss cornea donation issues. The results imply that conventional concepts are deeply rooted and that altering these concepts would be difficult.

Numerous cancer patients questioned the researchers on why they were selected. They felt that they were not close to death and would not consider signing relevant consent forms. They further asserted that it was unnecessary to discuss these issues with their family members in advance. However, even though the end of life is unpredictable, the patients refused to face the problems following death. Several patients provided unilateral consent, but refused to mention donation with their family members. Eventually, consensus for donation could not be achieved. Although patients who participated in this study showed a willingness to donate their corneas, no consent forms were signed. Since the beginning of this study, patients have passed and no corneas have been donated.

The optimal entry point for cornea donation intervention for cancer patients remains to be determined. Nine participants in the present study felt that cornea donations were irrelevant to them. This shows that regardless of the success or failures of cornea donation, these issues were not part of the patients’ plans. Notably, the nine participants who refused donation perceived the discussion of cornea donation during the interview as offensive and formulated various reasons to explain why they could not donate. This is a distinct phenomenon observed in Chinese cultures, in which people are unwilling to say “no,” although this was their intention. In this context, the time for propagating cornea donation education is increasingly important. The propagation of cornea donation messages should be avoided when patients are facing the sensitivity stage of their terminal illness, which prevents these messages from seeming overly offensive. Thus, patients should be informed of cornea donations during the early stages of cancer. That is, in addition to informing cancer patients on treatment methods, end-of-life arrangement information (e.g., full code, DNR, and cornea donation consent forms) should also be provided. Providing cornea donation information when reporting patient condition reduces the offensiveness of discussing it when the patient is near death.

Traditional Chinese customs give great respect to patients near death. We suggest that a program to promote cornea donation is needed. Gillon et al. (2010) indicated that there was not one chart regarding the discussion of cornea donation among the 100 charts available with the eligibility for corneal donation during September to December 2008. Out of a total of 2,000 deaths, only 50 patients became eye donors at nine palliative care units in metropolitan Sydney. A total of 90% of the donors came from two palliative care units (Roach & Broadbent, 2010).

Wei et al. (2008) maintained that the cornea transplantation concerns of ophthalmologists should also be listed as a factor for successful donation. In addition, terminal cancer patients who are willing to donate their corneas should be comprehensively assessed to ensure that they are suitable. After all, the success of cornea transplantation requires the transplant operation to be performed by an ophthalmologist. However, in Taiwan, a comprehensive tracking report is not available for patients who are willing to donate their corneas, resulting in a lack of evidence that shows the success of transplantation or the occurrence of cancer. Therefore, health professionals have a responsibility to provide information about cornea donation to patients. Therefore, the medical professionals need to actively explain cornea donation options to cancer patients.

In an anonymous hospital in France, the total number of reported deaths for 1999 was 1,112. In these cases, the donation coordinator confirmed the premortem organ donation intentions of 451 patients. However, following exclusions for age and disease factors, only 145 patients successfully completed the donation process (Muraine, Toubeau, Menguy, & Brasseur, 2002). These results show that medical personnel failed to inform or communicate information relating to cornea transplantation with patients and consequently overlooked numerous potential organ donors. In this study, many patients did not know that there was an issue of cornea donation. This indicates that medical professionals did not discuss the issue with cancer patients. In a study conducted in Taiwan, three cancer patients donated their bodies following death, but neglected to donate their corneas (Wei et al., 2008). In these donors, it was reported that since these patients were willing to donate their bodies to medical research, why would they be unwilling to offer their corneas to people in need? This was primarily because medical teams failed to inform the patients and family members regarding cornea donation.

Cornea donation is not a routine discussion with patients on the verge of death. As such, medical teams often fail to provide cornea donation information to patients who are near death (Gillon et al., 2012). Moreover, medical professionals do not offer sufficient information about the donation of corneas for patients and their families. A limitation of this study is that we did not visit family opinions regarding this issue. A previous study showed that the thoughts of family members affect cornea donations (Almeida, Hida, & Kara, 2016). The family usually refused to donate the patient’s corneas even when the patient was willing to donate before death (Rabiu, Oshola, & Adebayo, 2016). Therefore, discussions with family members are needed.

Conclusion

Organ donation has been promoted for many years in Taiwan. However, cornea donation practices for cancer patients are yet to be investigated. Most cancer patients maintain a negative stance toward cornea donation. Comprehensive considerations must be put into cornea donations and family members must be included in the related discussions. In addition, the empathy for the moods of a patient is a suggestive promotion for providing hints of cornea donation as early as possible, that is, rooting these concepts in the early stages. Then, when cornea donation is comprehensively discussed, the extent of patients’ negative attitudes can be potentially reduced. This shows the inconsistency of and the significant difficulties involved with patient willingness and donation behaviors. This study demonstrates that discussing cornea donations for terminal cancer patients are needed as early as possible with enough time to think about this important issue. Discussing cornea donation needs to be considered a routine part of the of end-of-life care discussion. It could be used to develop a model to the further development of a future strategy.

Footnotes

Acknowledgments

The authors wish to thank the National Taiwan University Hospital Hsinchu Branch, Taiwan, for making this research project. The authors are grateful to the Dr. Chih- Hsin Wei, the pre-dean of hospice ward, for his opinions and supports.

Author's Note

Yun-Fang Chen is now affiliated to Department of Internal Medicine, Nantou Hospital, Ministry of Health and Welfare, Taiwan.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study was supported by National Taiwan University Hospital Hsinchu Branch (No. 100-HCH-28).

Author Biographies

Su-Ching Kuo, RN, MSN, is a lecturer in the Department of Nursing at Yuanpei University of Medical Technology, and a doctoral student in Graduate Institute of Clinical Medical Sciences at Chang Gung University. Her research focuses on psychological stress in advanced cancer patients.

Pi-Ling Chou, RN, PhD, is an assistant professor in School of Nursing, College of Nursing at Kaohsiung Medical University, and a supervisor in Department of Nursing and a researcher in Department of Medical Research at Kaohsiung Medical University Hospital. Her research focuses on physical distress in cancer patients.

Yu-Chien Liao, RN, PhD, is an assistant professor in Department of Nursing at Yuanpei University of Medical Technology. Her research focuses on psychological distress in cancer patients.

Yun-Fang Chen, MD, is a senior hemato-oncologist in Department of Internal Medicine at Nantou Hospital, Ministry of Health and Welfare.

Ju-Fen Cheng, RN, BN, is a head nurse in Department of Nursing at National Taiwan University Hospital, Hsinchu Branch. She has been an oncology nurse for 16 years and has extensive research experience in spiritual and dying care.

Jia-Ling Sun, RN, PhD, is an assistant professor in Department of Nursing at National Taichung University of Science and Technology. Her research focuses on quality of life, palliative care, physical, and psychological distress in cancer patients.

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