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).
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).
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.
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.
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).
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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