More on Parental Living Liver Donation for Children with Fulminant Hepatic Failure: Addressing Concerns About Competing Interests, Coercion, Consent and Balancing Acts

Abstract

Parental living liver donation for children with fulminant hepatic failure raises complex ethical issues. According to a recent editorial in this journal, these include contradictory interests, the possibility of coercion and compromised consent and the need to balance the risks to the donor against the potential benefits for the recipient. Here I argue that in this setting, interests are often aligned rather than conflicted, that coercion of parental donors is rare, that consent may sometimes be valid even when it is not fully informed and that the correct balance to consider is the relative weights of risks and benefits for the donor. I conclude that living liver donation by parents of children with fulminant hepatic failure is consistent with societal norms of parental behavior, ethically acceptable and should be permitted regardless of the efficiency of the deceased donor organ recovery program.

Introduction

In a recent editorial, Dr. Reding argues that parents should be permitted to donate liver segments to children with fulminant hepatic failure despite the urgency of the situation and the need for a rapid decision, at least when a deceased donor is not available (1). I agree. However, I wish to call attention to some of Dr. Reding's other conclusions with which I do not agree and that I believe perpetuate misunderstanding in this area.

Contradictory interests

Dr. Reding begins by asserting that ‘contradictory interests [are] operative in living-related donor (LRD) transplantation’. If he is referring to those of the donor and the recipient, then this is frequently not true because often the interests of these parties coincide, especially when they are closely related. As Crouch and Elliott point out (2), ‘the picture of the independent and self-interested agent is inappropriate in the context of the family … the interests of family members are often inextricably intertwined’. Nowhere is this more true than it is for loving parents, who often take the interests of their children as their own.

Coercion and consent

Another ethical issue addressed by Dr. Reding is the possibility of coercion among LRDs. This fear is accentuated when considering parental donor liver transplantation for children with fulminant hepatic failure because of the need for an immediate decision, which compromises the ability to deliberate at length, the life or death nature of the situation, and the fact that parents may feel obligated to donate and unable to say no (1,3,4). These concerns have led some transplant professionals to limit parent to child living liver donation to nonurgent settings (5,6). For example, Dr. Otte and his colleagues (5), also at the Université Catholique de Louvain, ‘are very reluctant to consider living donation for a child with fulminant liver failure because the psychological burden of making a decision in such an urgent clinical situation exceeds what is acceptable, at least in our view.’ Does this make sense?

It is true that crises eliminate the ability to approach questions in a calm deliberative way. And this in turn limits the ability to weigh risks and benefits carefully and thus to provide an ideal informed consent (7). The rapid seemingly automatic decisions made by many LRDs (5,7,8), often before all the key information has been disclosed, are consistent with this view. However, I believe that when people are very closely related, as are most parents and their children, consent may sometimes be valid even when it is not fully informed (9). And the feeling of having no choice is not the same as coercion (10). Let's explore these issues further.

Informed consent is designed to ensure autonomous choice and to protect people from unwanted harm and exploitation (11). At first glance, the informed consent requirement seems sound, and in most cases it is. But there is a problem with rigidly applying this standard to parent to child living liver transplantation: that is, the informed consent doctrine assumes that the involved parties are disinterested. As Majeske et al. point out (12): ‘The traditional model of informed consent is based on an impartialist understanding of the requirements of autonomy that deemphasizes personal relationships …’

Clearly, an impartialist model is not appropriate for the very special relationship that motivates parent to child organ donation. Here it is essential to recognize the great relevance of the tight interpersonal bonds that usually exist and to understand that when they do, there is little if any risk of exploiting parents who want to give. Furthermore, in this setting, rapid decision making often makes sense because from the perspective of the many parents who would do anything to save their children's lives, all the key facts may be immediately available (8,13). These are: (1) their child is critically ill; (2) the parents have the opportunity to save their child's life by donating an organ; (3) organ donation and transplantation are accepted and effective practices; (4) other therapeutic approaches do not exist or are less likely to be successful; and (5) making sacrifices for one's children is a moral norm. A detailed understanding of the donation process may be much less important to caring parents than the welfare of the sick child whom they love so dearly. This point is illustrated clearly by the recollections of a set of parents, each of whom had donated a kidney to their daughter (14): ‘With our daughter's life at stake, possible future risks to the donor were not a consideration. There was no question as to “whether.” Suzy needed, and that was all there was to it.' In such cases, there is little doubt that the parents' decisions to donate, even when made rapidly, are really their own.

These observations suggest that the nature of the donor-recipient relationship should influence what we require of a valid consent (13). While we must try to educate all potential donors as much as possible, it may not make sense to insist upon the same stringent informed consent from devoted parents as we would demand from less closely related volunteers (9). As Majeske et al. point out (12): ‘The traditional requirements of informed consent do not appear well suited to evaluations of living related donors’ decision making … with its frequent emphasis on feelings of relatedness, interconnectedness, and obligation—a sharp contrast to the unpressured, rational decision making typically said to underlie informed consent…[In personal relationships] our actions are not a result of fixed rules or some sort of decision-making calculus but of affection and regard for the related other.'

Based on these considerations, I suggest that as long as the parental volunteer understands the probability of success and that donation carries risk of serious harm, rapid consent that emanates primarily from deep affection and concern may be just as valid as consent that is fully informed. In agreement with this view, Sauder and Parker conclude (15): ‘to fail to accept a prospective donor's decision because it was made too immediately or on the basis of emotion, not rational and prudential consideration of foreseeable risks and benefits, would violate the spirit of informed consent in mistaken service of the supposed letter of the doctrine's requirements. To discount or declare invalid such a decision is to largely ignore the context in which the offer was made, the relevance of the relationships of the parties involved and the importance of those relationships for the values of the decisionmaker’.

Even if one accepts this view, we still need to address the concern about coercion. This term has been widely but, I believe, inappropriately incorporated into discussions of living organ donation (13). Potential organ donors who do not want to proceed, but feel they have no way out, find themselves in what might be called harsh or coercive situations (10,16). But there is an important difference between coercion and a coercive situation. Both conditions limit freedom, but only coercion eliminates autonomy. To demonstrate this point, Faden and Beauchamp note that many patients considering life saving surgery have no real choice (16): ‘But this loss of freedom cannot be equated with a loss of autonomy … In a true situation of coercion, what controls, and thus deprives one of autonomy, is the will of another person, substituted for one's own will or desire, where the presented option is avoidable and the coercee wishes to avoid it’.

How does this apply to living organ donation? First, because coercion means that a bad choice situation was created by someone else, Dr. Reding's term ‘auto-coercion’ is a misnomer. Second, having a child in need of an organ transplant does not necessarily create even a coercive situation, as demonstrated by the fact that some parents who could donate choose not to (4,5). Finally, many parents really want to donate and do not find the decision a difficult one to make (5,7,17). So while it may be true, as Ross et al. assert, that parents have a prima facie duty to donate organs (or segments of them) to their children (18), I submit that this obligation is not primarily what motivates most of them; rather it is an overwhelming desire to save their child's life (7,19).

Based on these considerations, I conclude that there is little reason to think that organ offers by devoted parents are not made freely. In agreement with this view, Crouch and Elliott point out (2): ‘We do not believe that the parent who is offered the chance to donate part of her liver to a dying child is coerced by her love for her child, or by the exhortations of her conscience … Neither love nor conscience constrains the mother's autonomy; rather, they give voice to her autonomy and say something about the kind of agent she is …’‘If we are ever to get straight about the nature of voluntariness, we must recognize that moral and emotional commitments are not exceptional, are not constraints on freedom, but are rather a part of ordinary human life.’ Empirical evidence supporting this conclusion comes from a recent survey of living liver donors, most of whom were parents of the recipients, conducted by Chisuwa and his colleagues (20): 79 of 83 (95%) who responded said ‘that they had felt no coercion to donate’. This finding is even more impressive when one considers that this study was performed in Japan, a country in which very few cadaveric organs are available for transplantation.

Balancing risks and benefits

Dr. Reding also suggests (1), as have other authors (21,22), that when evaluating a potential living donor, the critical balance to consider is the benefit for the recipient versus the risk for the donor. I and others disagree (23,24). Such a standard asks physicians to change the primary focus of their loyalty in a major and, I believe, unacceptable way. As Dr. Levinsky pointed out years ago, physicians should act solely as advocates for their patients (25). Physicians cannot accomplish this goal if, when trying to decide whether to recommend a procedure, they are asked to balance the risks for one patient against the benefits for another (23). Such an approach would pose a clear conflict of interest, the recognition of which has led to the recommendation that potential donors and recipients be evaluated by separate physicians (1,7,26).

How then should physicians decide if a potential donor is acceptable? I believe that just as is true in other medical situations, for a physician to recommend her patient as an organ donor she must believe that there will be benefits for her patient, i.e. the potential donor, that are sufficient to offset the risks (23). This approach respects individual values regarding what counts as benefit, avoids conflicts of interest that arise under the donor-recipient balancing plan, and directs physician loyalty to where it belongs, solely with her patient. Note that this does not mean that the likelihood of recipient benefit is irrelevant. The probability and magnitude of recipient benefit are important, but not as simple balancers of donor risk; instead they provide critical information that affects the likelihood that the donor will benefit.

Of course, this discussion raises the question of how organ donors benefit and how can we know if the probability and magnitude of such benefit is sufficient to offset the risk? Elsewhere I have tried to answer these difficult questions and in the interest of brevity, I refer the interested reader to that discussion (23). But it should not be hard to see how enormous the benefit of a successful transplant would be for the parents of a beloved child about to die from end stage organ disease. This is vividly illustrated by the recollections of a set of parental donors (14): ‘There is no doubt in our minds that we, as kidney donors, have gained much more than we lost. Of inestimable value, of course, is the restoration of our daughter's life and health.’ And based in part on the possibility of such great donor benefit, Mack et al. conclude (4): ‘We believe that every parent has the right to be given the option of being a donor, even in emergent cases’. Furthermore, it is likely that given a child with irreversible liver failure, many parents would choose this option. This prediction is supported by survey results showing that most people would donate organs to their children even in the face of great risk (27).

Conclusions

What are the take home messages? First, when deciding if a volunteer's consent is valid it is important to consider her relationship to her intended recipient. I believe that the usual one size fits all recommendation that strict informed consent must always be obtained is misguided and is based on an impartialist view of the relationship between potential organ donors and their intended recipients. Clearly, such a view is not applicable to loving parents who want to donate a part of their liver in order to save their children. In such cases, as long as the parents have a basic understanding of the risks of donation and the likelihood of success, rapid consent that emanates primarily from care and concern may be just as valid as consent that is fully informed. Second, although it is often said or at least feared that parents may be coerced to donate, they rarely, if ever, are. Most parents who offer to donate organs to their children really want to do so. And even parents who find themselves in coercive situations can still act autonomously. Third, when evaluating potential LRDs, I believe that we should stop trying to balance the potential risks for the donor against the possible benefits for the recipient; rather, I suggest that we should be balancing the risks for the donor against the benefits for the donor, just as physicians do for all other patients. Finally, parental sacrifice for children is a widely accepted societal norm (17,18,28). When this is considered along with the tremendous benefit devoted parents may derive from seeing their beloved child restored to health, a strong case can be made that we have no right to categorically deny parents the opportunity to save their child's life through partial liver donation, nor should we want to. I submit that although our motives may be pure, when we prevent devoted parents from donating, we are not helping them; in fact, we are harming them by not respecting their autonomy and by risking losing the person who may well be the one most important to them—their child. And because we can never be sure that a deceased donor liver will become available in time (1), unlike Dr. Reding, I believe that the efficiency of the ‘postmortem organ sharing system’ is irrelevant. How many of you would be willing to take no for an answer and wait for a deceased donor organ if the dying child were your own?