Revealing details of recipients to families of potential donors

The potential benefit transplantation can bring to organ and tissue recipients is often mentioned in broad terms to families of potential organ donors.1 However, simply telling families that patients elsewhere in the health system could benefit or even have their lives saved is unlikely to make very much difference for two reasons: because this question will be asked of families during a time of great distress and because the potential recipients remain faceless and morally distant. Moral distance is a psychological phenomenon where excessive focus is given to the physically close or immediate, leading to a lack of attention being paid to the wider consequences of one’s actions (or inactions).2 3 Sque and colleagues have identified a tension in family organ donation decision making between notions of a ‘gift of life,’ as supported by societal expectations to save life, and the ‘sacrifice’ of the body, which must be made if organ donation is to proceed.4 The benefits and recipients of the gift are both morally distant from the more immediate sacrifice that must be made. Research into the psychology of altruism consistently finds that ‘doing good’ is easier if there is clear identification of who the good is for and the clarity of their need.5 Making faceless patients in need of an organ transplant more real to families may make decisions easier—and donation may also be more likely as a result.

The most direct way to reduce moral distance in this context would be to show families photos of the actual proposed recipients for the organs. This would certainly reduce the moral distance between the family and the prospective recipient, but showing a picture and saying ‘This person could die if you don’t permit donation’ is a crude, coercive tactic that encounters many objections (see below). Alternatively, the data given to families could be limited to name, gender, need, age and dependents. If we return to our example (above), this would mean that the following information would have been disclosed to Gillian, Emily and Tim:

Jennifer: super-urgently needs heart, 20, living with parents

Steve: urgently needs liver, 53, three kids, soon to be grandfather

Navid: needs kidney, 33, five children

Linda: needs cornea, 68, two children and six grandchildren

Note that as well as containing qualitative information about each potential recipient, these data also make the quantity of recipients clear (as some families may assume that only one person would benefit from donation). As well as fully informing families about the consequences for recipients of declining donation and hopefully improving donation rates as a result, giving them information about (potential) recipients earlier in the process might also reduce the incidence of regret felt by families who do not permit donation.6 One study found that 90% of donors but only 58% of refusers would make the same decision again.7 If information provision can increase consent rates fewer families will have to live with regret.

As well as decreasing the chances that families experience regret at not permitting donation, sharing recipient information might increase the chances that they experience the ‘silver lining’ effect that brings comfort during bereavement.8 Knowing details about potential recipients in advance might enhance this effect. Currently, families of donors in the UK and elsewhere are only told very minimal information about actual recipients after transplantation: their age and which organ(s) they received.9 But telling families more details about typical potential recipients during the donation conversation could be beneficial for both families and potential recipients.

Another point to bear in mind is that directed deceased donation (DDD) is now accepted practice in the UK and some other countries. Under DDD, donors or their families can request that a particular organ go to a particular family member or friend. In these circumstances, families want an organ to go to a recipient that they know a great deal about, generating the wish to help save that person. Why should families of deceased donors not also be given basic information about potential recipients who they do not know?

Potential objections

We foresee two potential ethical objections to this proposal, and one practical one. The first ethical objection that we anticipate is that it would amount to coercion to give details of recipients to families of potential donors. Even if a picture is not used, saying that a 20 year-old is likely to die unless donation goes ahead would still apply considerable pressure to the family in question—and this at a time when they are already grieving because of the death of a relative. There are two possible responses to this objection. Is it coercion to give facts about the consequences of a decision? We would argue that it is not coercive to do so, and indeed could jeopardise the voluntariness of the decision not to do so. Families deserve to be given relevant information about their decision, and this includes the fact that people might die as a consequence of refusal to donate. This is not a threat or blackmail, but a simple statement of fact, even if that particular fact is distressing. It might even be argued that an appeal to emotions is justified given the countervailing strong emotions already affecting the family and the consequences for potential recipients if donation does not go ahead.10 However, while it might not be coercive to give families information about recipients, this must be done sensitively, as evidence shows that families who feel pressured to donate are less likely to do so.11

Another objection is that this policy might lead to family decisions that are contrary to policies of equality of opportunity; for example, a family might be more likely to agree to donation if a potential recipient is young rather than old. Families of donors are not allowed to impose any conditions regarding recipients (such as age, race or sexual orientation-based criteria), and providing information about recipients could be seen as giving them permission to consider imposing restrictions based on the data they receive. Two related concerns are that families have no right to know details about recipients, and that providing this data might breach recipients’ confidentiality to share their information with families of potential donors. However, we are not arguing that families have any right to such information; only that sharing it might allow them to make a more informed decision. Furthermore, information would only be shared with consent, and recipients are likely to give that consent if doing so increases their chances of receiving an organ.

Practically speaking, our proposal encounters another important issue. It is only possible to establish who the recipients will be after the organs have been allocated. This requires checks for compatibility to minimise risk of organ rejection based on, for example, blood group and antigen matching. However, these blood samples can usually only be taken after the family consent to organ donation. This presents something of a paradox for our proposal: how can we use recipient data to improve consent rates if consent is needed to get data on recipients? One possible, but probably inadequate, solution would be to leave it up to families: if they want to know who could benefit, they could consent to a matching run, receive information on recipients and then make a decision regarding donation (although the assumption should be that donation will go ahead in cases where the patient was a registered donor).

An alternative strategy

An alternative strategy, and one we recommend should be piloted, is giving families more detailed information not of the actual proposed recipients, but rather of a representative sample of true and typical recipients. This would avoid the practical problem of not being able to identify potential recipients before getting consent, while achieving the desired effect of giving faces to those who stand to benefit from donation. A leaflet explaining donation and transplantation which includes photographs and quotes from those who have benefited from organ transplantation and/or a representative sample of those on the waiting list could be the mechanism by which this information is given to families when consent or confirmation of consent is sought from families. This model could be expanded to include case examples on the benefits donation can bring to families who say yes. It might even be possible to use photographs of real patients on the waiting list, while not implying they are likely to be the actual recipient of any organs from a particular donor.

This approach would counter the objections mentioned above. Using data from a more general pool of recipients would avoid the direct charge of coercion because the potential recipients perform an indicative function rather than applying direct emotional pressure. This more general data provision also addresses the concern about equality of opportunity; the actual recipients are not among those shown to the family, so there is little scope for discrimination. In addition, any concerns about recipient confidentiality would also be addressed.