The role of the relatives in opt-in systems of postmortal organ procurement

Japanese law requires the consent of the donor for declaring him dead at the moment of brain-death, and hence for the removal of his organs. Lebanese law requires the consent of both the deceased and his relatives.

It is legally recognized in most countries with an opt-out system, but, for example, not in Austria and Italy. For France and Spain see note 11.

As some authors suggest, e.g. Gevers et al. (2004).

As he says, the right to bodily integrity is one of our basic rights because we are embodied beings, but my dead body is no longer the embodiment of ‘me’. He also rightly points out that a right to bodily integrity would not rule out the overruling by the family of a decision to donate, because it is only a negative right.

Many opponents of ‘presumed consent’ see hardly any difference with conscription, e.g. Veatch (2000), Etzioni (2003), Bell (2006), and Godbout and Caillé (1992).

I have argued there that there are decisive differences between this case and taking organ removal as our default. I will draw upon that argument in Sect. "Donation by procuration?", but do not presuppose its validity.

See note 1. It is also worth noting that in opt-in countries it is either legally allowed (UK) or common practice (the Netherlands) not to request consent for the following procedures: to go on with artificial respiration until brain death sets in, even if this does not serve any interest of the dying patient himself, and to take steps for preserving the organs, in particular in the case of potential non-heart beating donors (see Bell 2006). Such steps are also taken without prior consent in the programmes, recently introduced in the USA, for retrieving organs from people who have suddenly died from cardiac arrest outside the hospital (Dubois 2009). In the description Wall et al. (2009) give of this procedure it is justified in terms of presumed consent. Requesting consent in the few minutes before ischemic damage occurs is often not feasible, and if it is feasible, many family refusals would probably occur. But if these considerations justify proceeding without actual consent, why is such consent required for taking out the organs? Cf. Verheyde et al. (2009).

It may be possible for them, however, to meet the burden of proof, for evidence may be available showing that most people who didn’t register a decision themselves, will be happy to have the decision made by their relatives. For the Netherlands see Taels and van Raaij (2008).

Veatch (2000, p. 161) recognizes that decision by the next of kin is problematic from the point of view of the right of self-determination, but not that it is precisely as problematic as presumed consent and for the very same reason.

That has often been reported to be the public’s general view of the proper role of the relatives (Farsides 2000, with further references). In the German transplantation law of 1997 it is explicitly stipulated that this is the task of the relatives; they have to be asked whether the deceased made any relevant statement during his life, and if not what they presume his will to have been. In France and Spain the law prescribes to ask the relatives for confirmation of the consent of the deceased, though in practice they are asked to consent themselves (Nowenstein 2008). Actually, although for most relatives their view of the preferences of the deceased is the most important consideration, it is not always the only or decisive one—far from it (Farsides 2000. Siminoff et al. 2007; Sque and Payne 1996; Sque et al. 2008).

According to Sque et al. (2008) a similar ambivalence between general pro-donation views and (in particular) concerns about the wholeness of the dead body characterizes many relatives.

The next of kin also have the right to demand an autopsy. However, there are considerable differences between this decision and a decision on donation, which makes it difficult to regard this as a precedent. For instance, for lack of relevant information the deceased is unable to take any binding decisions on an autopsy before his death, not even in the form of a veto. In the case of autopsy, therefore, there is every reason to assign the task of representing the deceased’s interests to the next of kin after his death.

According to Radeck and Jaccard (1997) perceived support of the medical staff is a pivotal factor in consent decisions, cf. Siminoff et al. (2007).

If the relatives cannot agree among themselves, taking out will also be refused, and the same happens when the burden of decision making is too much for the relatives under the circumstances.

This important argument is rarely found in the literature. It is briefly outlined by Engberts (2005).

This should not be interpreted as criticism of utilitarianism in general; utilitarians are able to acknowledge the importance of special relationships and make allowances for them.

More needs to be said to establish that duty, cf. den Hartogh (2011), with further references.

In the Netherlands only 40% of the population concur with the proposal not to ask for the consent of the next of kin if the deceased is a registered donor. (Friele and Kerssens 2004, 18) The Dutch Organ Donation Act nevertheless has an explicit provision of this kind since 2006. Most American states have similar laws, as well as Canada, Australia and Switzerland, and of opt-out countries Belgium. But as a matter of fact in none of these countries a persistent refusal by the family to go along with the registered decision of the deceased to donate will be overruled, and such refusals regularly occur, in the Netherlands in 8% of the cases. In the USA only 12% of the OPO’s will in such a case overrule the refusal of the family (Wendler and Dickert 2001).

Her argument is that patients are supported by the institutional power of the hospitals, but this is by no means automatically the case. In many cases it is the task of the intensivists who were responsible for the care of the deceased to ask the next of kin to consent to donation, and they tend to identify with the relatives, not with the organ recipients, see Sect. "Donation by procuration?"

Which is one good reason why he should not be the person who opens the issue of donation with the family. Streat’s (2004) plea in favour of the family’s right makes this perfectly clear by showing how an intensivist experiences the situation: the person who registered as a donor is dead, potential organ recipients are far away and he is confronted with the family and their grief. Cf. Nowenstein (2005, 180–182) about the attitudes of French doctors.

According to research by Sque et al. (2008) and Siminoff et al. (2007 973), resp. 41 and 44% of the next of kin decide to refuse consent to donation because the circumstances have already put such a strain on them that they are unable seriously to consider the request for consent. It is hard to reconcile this finding with the statement of Sque et al. that being asked for donation does not create an additional burden for the family.

See the characteristically fine discussion in Feinberg (1985, 72–75). For the prohibition other reasons are often provided, e.g. the possibility of exploitation or resulting inequalities of access, but such effects can be prevented by institutional arrangements. That the sale of organs is seen as degrading seems to me the reason most basically motivating the opposition to it, perhaps in addition to the idea that the profit motive would crowd out altruistic motives.

See den Hartogh (2002, pp. 67–71) for a criticism along these lines of the consent theory of political obligation. If these limitations on our options can be justified by other considerations without requiring consent, why is consent necessary?

A system like this is at present being discussed both in Germany and in the Netherlands. See Nationaler Ethikrat (2007); Coördinatiegroep Orgaandonatie (2008).

It is open to discussion whether or not we should retain in that system the option to register as a donor explicitly. This only makes sense if the law does not allow the relatives to overrule that decision. The effect might be that some of the people who now decide to register will not do so anymore, and in those cases the number of family refusals may be increased. But this may be more than compensated by the decreased number of family refusals in the case no registration had been made. See den Hartogh (2008, pp. 102–106).