The search for the “correct” formula for the psychosocial evaluation of potential living liver donors is an evolving process. The recent deaths of two living liver donors in the United States are a stark reminder that liver donation is not a benign procedure and that although great effort is made to ensure donor safety, risks are always present and mortality is always possible. Experienced centers have developed protocols that are reasonably reliable in terms of identifying occult medical issues or variant vascular or biliary anatomy that would raise donor risks to unacceptable levels. However, predonation psychosocial evaluations, although routinely performed, have been less successful in terms of identifying issues that may place donors at increased risk for psychological harm. Central to this issue is the widespread reliance on nonstructured interview-type evaluations and infrequent use of validated psychometric instruments.
In this issue, DiMartini et al. (1) report on a cohort of potential living liver donors who completed a battery of validated psychometric measures during the evaluation phase of their work-up. This cross-sectional study has some acknowledged limitations, but the authors are to be commended for utilizing donation-specific instruments in addition to the more general surveys, such as, the SF-36 and the Profile of Mood Status. They demonstrated that as a group, potential donors scored higher than expected on the general surveys compared to US normative data, confirming reports by others. They also examined the effects of gender, donor–recipient relationship and ambivalence upon the decisions made by potential donors.
The paper highlights a number of findings that are of interest to all who work with living liver donors and wish to ensure that they are fully informed of the ramifications of donation and that their decisions are free from coercion. As noted earlier, many of the respondents score above the expected values on the various instruments, but the individual scores frequently cover a wide range. Part of the utility of this paper is to document the existence of the “outliers”. Although numerous reports have indicated that the majority of living liver donors are satisfied with their decision and would not change it (2,3), there are some reports of individuals who have suffered significant psychological distress after donation (4,5). Although this study cannot determine if the donors at the extremes of the groupings are prone to postdonation distress, it is reasonable to hypothesize that individuals, who are totally unconcerned about the procedure during evaluation, might be traumatized by complications experienced by themselves or their recipients. It is also likely that donors, at the other extreme who were concerned about all aspects of the process at evaluation, might have difficulty coping with less-than-ideal outcomes. A longitudinal study that would document whether these results are transient or consistent findings is warranted.
Ambivalence in living-organ donation is a subject of considerable debate. There are groups that consider its presence in a potential donor sufficient cause to reject the candidate (6), whereas others do not even mention it when describing their donor evaluation algorithms. This is partly due to the fact that the determination of ambivalence is inherently subjective and the term is used to describe mild uncertainty as well as frank unwillingness to continue the donation processes. The re-introduction of the Simmons Ambivalence Scale and associated donor-specific instruments provides a means of resolving these discrepancies. They are validated instruments that speak directly to the areas of concern to donors and their caregivers. Although relatively new in the living-liver donor arena, they have been widely used to assess kidney and bone marrow donors and may be used to highlight areas of concern for individuals considering donation.
Ambivalence was observed in the majority of donor candidates in this paper. However, the authors used an admittedly broad definition of ambivalence. The Simmons questions ask if the candidate has ever had “doubts” or “felt unsure” about donating. It is difficult to imagine that someone who has researched or been educated about living liver donation would not answer affirmatively to those questions. However, this also highlights one of the strengths of the Simmons instrument: a person who answers affirmatively to one or two of the questions is clearly different from one who answers “yes” to all of them.
Finally, the authors suggest that donors who demonstrate ambivalence or negative expectations about the outcome of donation might be increased risk for worse postdonation outcomes. Although this has been reported in unrelated bone marrow donors and general surgical patients, it may not be true for living liver donors. These individuals are fundamentally different from those who undergo surgery as a result of personal illness. Liver donors are known to the recipient and the recipient's family, and in most instances receive a great deal of positive reinforcement regarding their donation that may counteract the effects of ambivalence. We have reported on a group of ambivalent living liver donors (n = 45) followed longitudinally from evaluation to 1 year postdonation who have reported no ill effects (7). These donors were not evaluated with any of the Simmons instruments, but it is likely they would have scored in the lower-to-middle range for ambivalence. It is probable that this concern would be most applicable to donors who score high on the ambivalence scale.
It is clear that the evaluation of living liver donors is a continuum that requires collection of psychosocial as well as physical outcomes collected longitudinally over an extended period of time. Such data will help define the natural course of decision-making, the relative role of ambivalence and determine if there is a relationship between psychosocial beliefs, relationships and physical outcomes. Hopefully, the development of educational strategies and early interventions will improve all donor's ability to cope with unexpected or poor outcomes.