Based on constant comparative analysis, we developed a model of donors' decision-making processes consisting of 5 stages: (1) recognition, (2) digestion, (3) decision-making, (4) reinforcement, and (5) resolution. The second and third stages differed from the fourth and fifth in a participant's psychological state. In the former stages, donors reached a decision having experienced anxiety and conflict; in the latter stages, they prepared for transplantation having experienced impatience and nervousness (Fig. 1). Underlying the entire decision-making process was a central theme: a perceived reality of “having no choice.”
Central Theme: “Having No Choice”
Participants described a reality of having no choice. Becoming a donor was not a decision but rather the “only decision.” This theme informed the entire decision-making process and was further delineated into 4 codes: (1) priority of life, (2) only LDLT, (3) for family, and (4) only me.
“Priority of life” described a candidate's perception that he or she should prioritize the recipient's life over all else and, therefore, should be willing to pay a sacrifice.
“Only LDLT” depicted a donor's understanding that there exists no other means of saving a recipient's life besides LDLT. In Japan, there have been only 37 cases of organ transplantation from brain-dead donors since 1997, when the Organ Transplant Law was passed.24 As one participant stated, “it is like winning the lottery.” Drug therapy merely sustains a recipient's life and is not regarded as an alternative therapy.
“For family” described the thought that one would give all that is in his or her power for his or her family. For adult donors, one's “family” often meant one's immediate family. Subsequently, the experience of a donor whose recipient is a parent, sibling, or distant relative is likely to be more complicated than that of a donor whose recipient is his or her immediate family member.
“Only me” depicted an awareness that one was the only candidate eligible to donate and save the recipient. This awareness was based not only on medical reasons, but also on a participant's subjective understanding that he or she was the only one: “It is best for a parent to help their child.”
Although the reality of having no choice existed as a psychological burden, it concurrently motivated each participant to donate. For instance, one male participant said, “If another option were available, of course, I would have chosen it” (“only LDLT”). Others indicated that they would have not donated if the circumstances were not so emergent (“priority of life”), if it were not for family (“for family”), and/or if somebody else could have become a donor (“only me”). The four codes were applied to each step of the decision-making process for those who felt they had no choice.
Stage 1: Recognition
The decision-making process began soon after a participant recognized that they had no choice. Often participants determined that they had no choice without ever having visited the transplantation center. Several participants first learned of LDLT from the recipient, family, or physician who initially saw the recipient. Others learned of LDLT through the media (e.g., books, internet) when they tried to find a way to save a loved one.
It was at this point when participants first realized that they were to become the designated donor. The following candidates were usually omitted when more than 1 existed within the family: those with an unfit blood type, those with presence of disease or who carried a high risk of disease, the mother of an infant, the breadwinner of the household, the elderly, and the young. Young single women were often excluded not only because of their possibility of pregnancy but also because being physically unscarred is traditionally symbolic of maidenhood. When several candidates existed, “only me” seemed to no longer apply. However, participants usually foresaw that they would become the donor if test results show their compatibility.
A participant's recognition of having no choice did not necessarily mean that one understood or realized the consequences of his or her decision. Participants sometime saw LDLT as “something you see on television” and had no real knowledge of the actual procedure: “At first, I thought it would be like taking an appendix off.” Many passed through this stage and only later gained an accurate understanding of the risks and expenses of LDLT.
Stage 2: Digestion
Having had no choice, participants began to consider all possible outcomes that their decision could yield. Some of them realized the seriousness of LDLT, became anxious and/or concerned, and tried to convince themselves that LDLT was the only option. Others attempted to collect additional information prior to making a decision. These were all attempts to gain control over the situation and to digest the reality of having no choice.
During this stage, donor candidates considered the benefits of donation, including saving a recipient's life, relieving a recipient's suffering, and contributing to the welfare of the family. A fraction of participants were motivated to donate by a desire to avoid the guilt and criticism of others: “Most likely, people would see that person [who did not donate] as the one who killed the patient.”
At the same time, participants considered the costs of donation, including the risk of death, complications and/or hospitalization, the need to take a temporary leave from one's job, economic struggle, and an imposed burden on one's immediate family. The possibility that LDLT could be unsuccessful also caused several participants to feel doubtful.
Participants who considered the benefits larger than the costs passed through this stage without hesitance: “If I donated, I would save my brother, so I guess there was no room at that point to think about something like work.” On the other hand, candidates who elicited ambivalence took time to pass through this stage. Some struggled with having to weigh the benefits and costs; others felt pressure to avoid guilt and criticism: “Everyone is human; no one thinks only of other people. I thought of the pain and scars, or even worse.” Once a participant accepted their reality of having no choice, they were ready to make a decision.
Stage 3: Decision-making
Participants decided in a variety of ways. The majority of participants took a chance on the hope of saving a loved one: “It would just have been a matter of time before [my husband] died without the transplant. With this understanding, I decided to take the gamble.” Others were driven by a sense of mission that often led to an underestimation of risks, either conscious or unconscious.
Many participants decided once family, friends, and/or health care professionals relieved their anxiety and conflict. For example, when anxiety was a result of insufficient medical knowledge, a thorough explanation by the attending physician combined with a positive test result often provided comfort, confidence, and the capability to decide. What seemed like coercion from a third person's perspective was sometimes considered encouragement from a participant's perspective. We named this perception “quasi-coercion”:“Anxiety certainly existed, and just when I was considering the fear in it all, [the recipient] said, ‘So are you just going to let me die?’ When I heard this, I realized it was only a parent who could save their child.”
Some participants felt obliged to donate when test results showed that they were the most suitable candidate. Participants who were passive toward donation decided at the last minute, when the recipient's condition began to deteriorate. The psychological pressure that the recipient would die if one did not become a donor stimulated a decision as well: “It was not like I could say no.… I was unable to say not even as a joke.” In all, participants often decided with a myriad of emotions, when “both a sense of mission and pressure existed.”
Stage 2 to 3: Reaching a Decision; Anxiety and Conflict
Stages 2 to 3 can be summarized as a psychological state of “reaching a decision.” Participants did not go directly from Stage 2 to Stage 3, but rather vacillated between these 2 stages, experienced a variety of anxiety and conflict and eventually made a decision.
Anxiety and conflict were prevalent throughout Stages 2 and 3; the degree ranged from fleeting anxiety related to the procedure to internal and/or familial conflicts. Participants rarely had an opportunity to express their anxiety and conflict since they assumed it would hurt the patient, cause family concern, and possibly result in the medical staff's canceling the procedure. Proper support by family, friends, and medical staff eased donors' feelings; otherwise, unexpressed fear and concern became a constant weight on donors' minds, and some of them took it out on their families and/or spouses. In all, the greater the anxiety and conflict, the longer a donor candidate fluctuated between Stage 2 and Stage 3.
Stage 4: Reinforcement
Participants who arrived at a decision would then subsequently reinforce it psychologically. Once they confirmed that there was no choice, donors would want to go ahead with surgery: “I believe the turning point was when the test confirmed my eligibility. After that, I had my mind set on donating.”
Participants also tried to take responsibility in their decisions. Reversing their decision meant going back on their word and disappointing the recipient and family. When the candidates who had reached this stage learned of their eligibility to be donors, they usually expressed feelings of relief and joy.
This shift in a participant's psychology catalyzed several other behavioral changes. Most donors began to change their lifestyle habits for the better (e.g., quitting smoking, no alcohol, proper diet, increased exercise). They believed that an improvement in their state of health would not only lead to a better prognosis for the recipient, but also would help them to recover. Participants began to make preparations for their hospitalization both at work and home (e.g., handing over duties to colleagues, arranging for insurance).
Some participants at this stage tried to convince recipients, whom showed reluctance in hurting a loved one, that LDLT was the right choice and that they should accept the offer. Also, they would deny any opposition to their decisions and would disregard any feelings of uncertainty or anxiety: “I didn't really think that I would become sick as a result of complications.” One month after we began this study, the first LDLT donor death in Japan was reported.25, 26 Despite this news, 1 donor expressed the following: “[Physicians] are probably being even more precautious now than before in order to prevent another misfortune like this one from happening. So, that was probably the best time [to become a donor].”
Thus, for participants at this stage, information on risks provided at the transplantation center was no longer a factor in their decision. In all, this stage of reinforcement described a motivation to donate and included a psychological defense mechanism to overcome internal conflict and anxiety.
Stage 5: Resolution
Resolution denoted various meanings such as preparedness, resignation, and/or acceptance of donation. This state of mind was particularly apparent as surgery approached. At the present center, the schedule was confirmed one week before the procedure and candidates were hospitalized for the following day. For instance, 1 participant expressed his full acceptance of having become a donor: “Until actually entering the operation room, I did not think of anything. I didn't have any anxiety; all I thought was that there was no other option.”
Others resigned themselves to the fact that, “once you had come this far, there was nothing you could do about it” or “what will happen will happen.” To explain this state of mind, many participants used the idiom “manaita no koi,” which depicts a koi carp lying on a cutting board just waiting to be cut open, a state of being unable to escape from another's control. Others felt it up to the heavens—“All I could do was pray for success”—while some resigned themselves to fate: “For the time being, I just had to do it and that was it.”
A few expressed their anxiety and inability to sleep the night before surgery. Yet participants expressed that the anxiety and sleeplessness were due not to a lack of acceptance but rather to never having been hospitalized and never having undergone surgery. Overall, it was usually rare for candidates to doubt their decision to donate: “It was inevitable at this point.”
Stage 4 to 5: Facing Transplantation: Impatience and Nervousness
Stages 4 and 5 illustrate the psychological process of “facing transplantation.” Participants did not commit to transplantation by going directly from Stage 4 to Stage 5. Rather, they fluctuated between these 2 stages and, while experiencing impatience and nervousness, finally underwent surgery.
It was rare for participants to turn back from “facing transplantation” to “reaching a decision.” Once they had decided, “there (was) no return.” This did not mean that candidates no longer experienced anxiety, but rather that donors no longer felt, or at least tried not to feel, doubt.
Impatience and nervousness were prevalent in this state of facing transplantation. Participants became irritated with a prolonged waiting period (e.g., the transplantation center was not able to confirm a day for surgery). To maintain commitment to donation and to a healthy lifestyle, fighting against “a sometimes overwhelming” fear was both mentally and physically straining. Recipients' deterioration also became a concern. Several participants were unable to stand this uncertainty and complained that “I had the feeling of ‘let’s hurry up and just cut me open.' Anything was better than just having to wait.” Other participants started drinking and smoking again to ease their strain and failed to maintain their healthy habits. Without a specific date being set for surgery, candidates were left with having to reschedule their work, which also led to additional restlessness. As a result, some expressed anger and complained to transplantation coordinators. Many felt that support from family and friends and understanding from one's boss and colleagues were significant.
Participants often became nervous as surgery approached. The seriousness of LDLT, which may have not been fully recognized up until this point, was now realized, bringing a plethora of other emotions (e.g., fear of surgery). “At first, I didn't think it was such a big deal. But once the day grew closer, I began to realize the weight of the matter. It was overbearing, and there was a lot of fear as well. And it kept increasing. It was quite hard.” This nervousness was often relieved by family, friends, and medical staff. In cases where there was insufficient support, this nervousness persisted and often increased.