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Psychological Factors Influencing Donors' Decision-Making Pattern in Living-Donor Liver Transplantation

Uehara, Minako1,3; Hayashi, Akiko2; Murai, Toshiya1; Noma, Shun'ichi1

doi: 10.1097/TP.0b013e31822e0bb5
Clinical and Translational Research
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Background. It has been reported that living liver donors may develop psychological or psychosocial impairments after transplantation, although the majority of them do not develop much difficulties. Their postoperative psychological prognosis may be affected by the way they made their decision to donate. The purpose of this study was to investigate the association of donors' preoperative psychological factors with the processes of their individual decision-making to donate and their family-level decision-making to select one donor among themselves.

Methods. A total of 165 living liver donor candidates underwent a semistructured interview, several standardized psychological tests, and a quality of life measurement. The results of the tests were compared among the groups classified according to the types of their individual and family decision-making processes.

Results. Donor candidates who made a “postponement decision” had higher trait anxiety and higher alexithymia scores than candidates who made a “deliberate decision,” and candidates whose family made a “de facto decision” had higher trait anxiety and higher alexithymia scores than candidates whose family made a “decision of consensus,” which indicates that those who have high trait anxiety or alexithymia may tend to take a “postponement” pattern in the individual decision-making process and a “de facto decision” pattern in the family decision-making process.

Conclusions. The results indicate the importance of noting living donors' psychological traits for providing them appropriate preoperative psychological support.

1 Department of Psychiatry, Graduate School of Medicine, Kyoto University, Kyoto, Japan.

2 Department of Multidisciplinary Cancer Management, Graduate School of Medicine, Kyoto University, Kyoto, Japan.

This work was supported, in part, by the Ministry of Education, Culture, Sports, Science, and Technology of Japan.

The authors declare no conflicts of interest.

3 Address correspondence to: Minako Uehara, M.D., Department of Psychiatry, Graduate School of Medicine, Kyoto University, Shogoin-Kawaharacho 54, Kyoto 606-8507, Japan.

E-mail: minakou@kuhp.kyoto-u.ac.jp

M.U. participated in research design, manuscript preparation and writing, actual research, and data analysis. A.H. participated in research design and actual research. T.M. participated in data analysis. S.N. participated in actual research and data analysis.

Supplemental digital content (SDC) is available for this article. Direct URL citations appear in the printed text, and links to the digital files are provided in the HTML text of this article on the journal's Web site (www.transplantjournal.com).

Received 22 February 2011. Revision requested 15 March 2011.

Accepted 15 July 2011.

Living-donor liver transplantation (LDLT) was first performed in 1989 and has now become an established surgical therapy for end-stage liver disease. In Japan, most liver transplants (>95%) are from living donors, because the number of brain-dead donors is small, even after the organ transplant law came into effect in 1997 (only 82 by 2009) (1). Also in other countries, an increasing number of LDLTs are performed to overcome organ shortages.

Recent studies have reported that LDLT donors' postoperative psychological and psychosocial status are mostly normal (2–5); whereas some have discussed small numbers of donors with psychiatric disturbances including depression (6–8), some psychosocial difficulties (9), or prolonged somatic symptoms that may be partly psychogenic (2, 10). Only a few reports are available on what types of living donors would have these psychological problems after donation: Walter et al. (11) described the association between the LDLT donors' preoperative “anger” level and their perceived stress after donation, and Switzer et al. (12) found that bone marrow donors with greater predonation ambivalence reported more physical difficulty and negative psychological reactions postoperatively. These studies suggest that what donors feel before donation is one of the factors affecting their postoperative psychological prognosis.

One can hypothesize that these preoperative feelings depend considerably on their decision-making process, including their motivation for donation and donor selection process among family members, although there can be other influencing factors such as urgency of transplantation or other stressors, donor-recipient emotional closeness, and each individual's personality, and these factors may also have mediating effects on the decision-making process. There have been some reports since the 1960s on various complicated psychosocial problems with such donor selection processes in renal transplantation (13, 14). However, with respect to LDLT, little is known about the relevance of these decision or selection processes to the donors' psychological factors, although a limited number of qualitative studies have begun to be reported (15, 16).

The purpose of this study was to expand our previous study (17), which demonstrated part of the association, by further investigating donors' psychological factors including anxiety, depression, quality of life (QOL) status, and alexithymia, a deficiency in processing and describing one's emotional feelings. We also investigated their more detailed decision-making process to clarify the associations with these psychological factors, and to help provide appropriate psychological intervention and support for living donors.

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RESULTS

Participants' Demographic Characteristics

A total of 165 LDLT donor candidates were enrolled according to the procedures described in the Materials and Methods. Their demographic characteristics are delineated in Table 1.

TABLE 1

TABLE 1

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Recipients' Demographic and Clinical Characteristics

In seven cases, the first participant was rejected at the final stage of physical work-up and the other candidate came to us. Because of this, the recipients comprised 158 patients (79 men and boys and 79 women and girls), ranging in age from 1 month to 71 years, with a mean of 40.7±22.6 years. Table 2 summarizes their diagnoses.

TABLE 2

TABLE 2

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Standardized Psychological Tests and QOL Measurement

Participants completed the following self-administered questionnaires: the State-Trait Anxiety Inventory (STAI), the Beck Depression Inventory (BDI), the Medical Outcome Study 36-Item Short-Form Health Survey, and the 20-item Toronto Alexithymia Scale (TAS-20). The scores are shown in SDC 1 (http://links.lww.com/TP/A491).

In men, the STAI-state (STAI-S) (t=−4.76, P<0.001), STAI-trait (STAI-T) (t=−9.75, P<0.001), and BDI (t=−2.16, P=0.033) scores were lower than the norms. In women, the STAI-S score was higher (t=2.20, P=0.031), the STAI-T score was lower (t=−3.81, P<0.001), and the BDI score showed no difference (t=0.20, P=0.84). The physical component summary (PCS) score of 36-Item Short-Form Health Survey was higher (t=5.76, P<0.001), the mental component summary (MCS) score showed no difference (t=0.45, P=0.66), and the TAS-20 score was lower (t=−6.01, P<0.001) than the norms.

The STAI-S (F=0.015, t=−3.91, P<0.001) and the BDI (U=2615, P=0.023) scores were higher, and the MCS score was lower (U=2147, P<0.001) in women than in men. These gender differences are consistent with those of norms. No gender differences were found in the STAI-T, PCS, and TAS-20 scores.

No significant associations were found between the results of the tests and the participants' other demographic variables: age, marital status, and occupational status. No significant differences were found in the results regarding relationship to recipient, recipient age group, whether they were living with their recipient, and urgency of transplantation.

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Classification With Individual and Family Decision-Making Process Based on a Semi-Structured Interview

According to the classification of individual decision-making processes which Simmons et al. (18) applied in their study investigating their living kidney donors, we classified our candidates into three groups: “Immediate” donors volunteered to donate immediately upon hearing of the need, sometimes from moral responsibility without thinking about the alternatives; “deliberate” donors reached a conscious choice after spending time of deliberation; and “postponement” donors evaded the decision while taking small steps that locked them into donation. The candidates who immediately volunteered to donate and later reopened their decision with deliberation were categorized into the “deliberate” group according to their classification. Eighty-six candidates (52.1%) were classified as “immediate,” 66 (40.0%) as “deliberate,” and 13 (7.9%) as “postponement.”

Additionally, according to their classification of the family-level decision-making process in which one was selected among several potential donors, we reclassified our candidates into three types: “decision of consensus” in which everyone involved were happy without any winners or losers, “decision of accommodation” in which agreement was reached but some members thought they had given in to others, and “de facto decision” in which events seemed to determine outcome without explicit discussion. There were 38 (23.0%) cases where there was only one eligible donor within their family members and unestranged relatives; these candidates were not classified by the family decision-making process. Of the remaining cases, 80 candidates (48.5%) were classified as “decision of consensus,” 27 (16.4%) as “decision of accommodation,” and 20 (12.1%) as “de facto decision.”

The interrater reliabilities of the classifications of the individual and family decision-making processes were tested on 20 randomly selected subjects between two independent coders (the first and last authors) based on the detailed records of the semi-structured interview. Both interrater reliabilities were found to be good, with kappa coefficients of 0.84 and 0.92, respectively.

As shown in Table 3, there were no significant differences in the distribution of these decision-making patterns according to most variables, namely gender, age, degree of relationship to recipient, whether they were living with their recipient, and urgency of transplantation, except that the “decision of consensus” was significantly more frequent in child cases. Additionally, these two decision-making processes were independent of each other (χ2=9.52, P=0.12) (Table 4).

TABLE 3

TABLE 3

TABLE 4

TABLE 4

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Association of Psychological and Psychosocial Ratings With Individual Decision-Making Process

Significant differences were found among these three groups of “immediate,” “deliberate,” and “postponement” in the STAI-T and TAS-20 scores with analysis of variance, whereas no differences were found in the STAI-S, BDI, PCS, and MCS scores. With Tukey's test, the STAI-T (F=4.19, P=0.012), and TAS-20 (F=3.93, P=0.044) scores were higher in the “postponement” candidates than in the “deliberate” ones (Fig. 1a).

FIGURE 1.

FIGURE 1.

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Association of Psychological and Psychosocial Ratings With Family Decision-Making Process

Significant group difference was found in the PCS score; the “decision of consensus” candidates scored higher than the “decision of accommodation” ones (U=730, P=0.012).

Significant differences were found in the STAI-T and TAS-20 scores with analysis of variance, whereas no differences were found in the STAI-S, BDI, and MCS scores. With Tukey's test, the STAI-T (F=3.16, P=0.035) and TAS-20 (F=3.33, P=0.031) scores were higher in the “de facto decision” candidates than in the “decision of consensus” ones (Fig. 1b).

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Correlation Between the Variables

Considerable correlation was found between the above two variables of STAI-T and TAS-20 scores (r=0.546, P<0.001). The correlations of the TAS-20 score with the STAI-S (r=0.230, P=0.003) and BDI (r=0.408, P<0.001) scores were also significant but weaker.

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DISCUSSION

Our major findings are as follows: First, our donor candidates had good psychological status and comparable mental QOL as a whole group, compared with the general population, which is consistent with earlier studies. Second, the candidates who made a “postponement decision” had higher STAI-T and TAS-20 scores than those who made a “deliberate decision.” Finally, the candidates whose family made a “de facto decision” had higher STAI-T and TAS-20 scores than those whose family made a “decision of consensus.”

The last two results indicate that the potential donors with high trait anxiety or alexithymia tended to decide to donate in a “postponement” pattern rather than a “deliberate” pattern, and tended to be selected as a candidate among their family members in a “de facto decision” pattern rather than a “decision of consensus” pattern. Alexithymia, which was initially described as a characteristic of patients with psychosomatic disorders (19), is a disturbance in affective and cognitive functions characterized by an inability to recognize or verbalize one's emotional feelings. The term is derived from the Greek language and literally means “no words for emotions” (a=lack, lexis=word, thymos=emotions).

The reason why candidates with high trait anxiety tend to take these patterns may be that they become too worried about and focus too hard on various matters, both of themselves and of their recipient, to make crucial decisions. They may consequently refuse to donate, or alternatively may not be able to decide to donate until the last minute, resulting in a “postponement” pattern. In their family, they may be ruled out, or alternatively may be selected as a candidate without frank discussion, that is, in a “de facto decision” pattern, because other members may tend to avoid inciting the individual's anxiety.

Meanwhile, candidates with high trait alexithymia, who cannot realize well how they emotionally feel about themselves and their recipient's state of affairs, may have difficulty deciding and thus delay decision to result in a “postponement” pattern, because what one emotionally feels is one of the factors driving the individual's decision for action. In their family, they may be vaguely selected as a candidate without plain discussion, that is, in a “de facto decision” pattern, because what they feel may not be obvious to other members. Our participants' low TAS-20 scores compared with norms suggest that those with a relative tendency to well identify and describe their emotional feelings actually tended to offer and to be selected as candidates. Indeed, only 3.0% (5/165) were assessed as alexithymic using the TAS-20 cut-off score of 61, which is even lower than the rate of 9.7% observed in the earlier study by Fukunishi et al. (20). However, our results also suggest that those with a relatively high alexithymic tendency among them tended to exhibit these “postponement” or “de facto” patterns.

Donors through such “postponement” or “de facto” decision-making may be at increased risk for failing to cope well with their postoperative course and may sometimes develop some psychiatric distress because these decisions lack the process of “embedding the donation into a meaningful context ” (21). Attention and sometimes preoperative psychological intervention for these potential donors may therefore be recommended to help them make their own independent, autonomous decision by which they can “integrate their experience into their life” for themselves: for those with high trait anxiety, perhaps an interview and explanation should be performed with time and care, enough so to identify and alleviate their excessive anxiety. For those with high trait alexithymia, along the lines of psychotherapeutic methods for alexithymic patients with psychosomatic or related disorders (22), a supportive approach may be effective to encourage them to reflect on and gradually express their emotional feelings, including even their inner conflicts.

These approaches should often be considered in combination, because the correlation between STAI-T and TAS-20 scores, which has also been observed in previous studies (23, 24), suggests that these personality traits sometimes overlap to some extent. A low threshold for expressing negative feelings would also enable us to assess the nature of their anxiety, as proposed by Papachristou et al. (25). We can infer the presence of these traits to a certain degree from clinical observation of how and what they talk about, or assess them with psychological tests.

In contrast, the association of the candidates' temporary psychological condition presented by STAI-S and BDI scores with their decision-making patterns, demonstrated in our previous study (17), was not replicated. Instead, in this study, the association was found between these patterns and their long-standing personality trait.

Alexithymia, although generally considered as a stable personality trait, has been reported to be found also in patients with dialysis, with transplants, with cancer, or in the intensive care unit (26). It can be explained as a protective factor against the emotional seriousness of these life-threatening situations and is called secondary alexithymia (26). Therefore, alexithymia may have some state-dependent aspect, and the possibility should be considered that the high TAS-20 scores in this situation may partly reflect their “state” as a reaction to psychological stress. In particular, if donor candidates feel unduly pressured or somewhat coerced into donation, or have other problems in their family relationships, they and their family may tend to postpone their decision, resulting in a “postponement” or “de facto decision” pattern. Concurrently, these candidates may become alexithymic as a state-dependent reaction to the stress, which may lead to a high TAS-20 score. In such cases, we may need to consider the possibility that the candidates may feel reluctant or may not really want to donate. To examine this question, however, further longitudinal studies are needed; following the changes in the scores after they actually donate.

Papachristou et al. (25) also revealed that their LDLT donors' initial decision was an immediate willingness as an emotional reaction followed by one of the following decision-making processes: reconsideration of their decision or avoiding further consideration, which may nearly correspond to our “deliberate” and “immediate” donors' decision-making, respectively. They further suggested that the donors in the first group would cope well with any postoperative outcomes, whereas the avoidance coping of those in the second group can sometimes be problematic. Although no significant differences were found in our study for the preoperative psychological states and traits, the postoperative adjustments may differ between these two groups, because the “immediate” donors are similar to the “postponement” donors in that they avoid reconsidering their decision and can thus be said to lack the process of integrating their experience. This aspect is another issue to be investigated in future studies.

In addition to the above results, we also found that the potential donors with better physical QOL tended to be selected as candidates among family members in a “decision of consensus” pattern rather than in a “decision of accommodation” pattern. The reason for this may be that the family members tend to more easily agree with the decision to select such individuals, who seem healthier and stronger, because good physical health is a highly convincing standard that is easy to accept for all the members.

Moreover, we also found that the candidates donating to adult recipients tended to take a “decision of consensus” pattern in family decision-making less than those to child recipients, whereas no difference was in individual decision-making. The result may reflect that family decision-making is likely to be complicated in adult cases where there can be several potential donors such as spouses, parents, siblings, and sons or daughters; whereas it is relatively easy in child cases where each of their parents often becomes a donor. Because psychological conflicts can arise not only between donor and recipient but also among some potential donors and also between the potential donors and their own family members, the increase in the number of potential donors can produce more psychological struggles.

A similar problem may need to be taken into account also in the following context. In Japan, a diagnosis that requires a liver transplant is almost understood as a need of a living donor from the patient's family, because the chance of undergoing transplantation from brain-dead donors is limited. This fact has increased psychological pressure on the family members, and their decision to donate has tended to be of “having no choice” (27). Although the revised law recognizing brain death as legal death and relaxing the requirements for organ donation from brain-dead persons has just come into force in July 2010; however, we cannot expect that their psychological burden will easily decrease: “Having another choice” may certainly decrease psychological pressure on them on the one hand, but it also can add another psychological dynamic sometimes leading to new conflicts in their individual and family decision-making process on the other.

Future studies are needed to investigate how these donors' postoperative psychological outcomes, including the level of satisfaction or regret, vary for the different types of decision making, and to search for effective interventions and support systems for donors. Moreover, it should be noted that the donors for highly urgent transplantation and the foreigners, who were excluded from our study as described in the Materials and Methods, may need even more help and care, and should also be carefully investigated as case studies.

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MATERIALS AND METHODS

This study was approved by the Kyoto University Graduate School and Faculty of Medicine Ethics Committee and was conducted in accordance with the Declaration of Helsinki. After a verbal and written explanation of the study to the participants, written consent was obtained from them. A further detailed description is provided in SDC 2 (http://links.lww.com/TP/A492).

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ACKNOWLEDGMENT

The authors thank Dr. Shinji Uemoto and Dr. Takuji Hayashi for their support and advice, and all the participants for their participation in the study.

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Keywords:

Living donor; Decision-making process; Anxiety; Alexithymia

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