Many families refuse to consent to donation from their deceased relatives or over-rule the consent given before death by the patient, but giving families more information about the potential recipients of organs could reduce refusal rates. In this paper, we analyse arguments for and against doing so, and conclude that this strategy should be attempted. While it would be impractical and possibly unethical to give details of actual potential recipients, generic, realistic information about the people who could benefit from organs should be provided to families before they make a decision about donation or attempt to over-rule it.
- donation/procurement of organs/tissues
- vital organ donation
- allocation of organs/tissues
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- donation/procurement of organs/tissues
- vital organ donation
- allocation of organs/tissues
Jack, a 55 year-old, has collapsed after a severe and sudden headache at work. His family receive a call from the hospital informing them that he has suffered an intracranial bleed. They rush to the hospital, but he remains unconscious. After some tests the next day, the medical team gently explain that Jack is not coming back, and soon after, Liz, the specialist donation nurse, approaches to ask the family if they were aware that Jack was a registered organ donor. His wife, Gillian, says she was aware, but does not want donation to proceed as it is too upsetting. Her adult children, Emily and Tim, support her. The donation nurse reiterates that Jack’s wishes should be respected, but the family are adamant. Liz does not persist.
A few days later, Jessica dies: she was top of the waiting list for a new heart and was ready for an operation. She will never know it, but Jack’s heart would have been a good match. She was only 20, and her family are devastated. Several weeks after that, Steve, who is 53, has been waiting for months for a new liver, dies. He had been top of the list but his operation was cancelled because he became too sick while waiting; Jack’s liver would have saved him. He will never hold his granddaughter. Navid, 33, gets new kidneys 6 months later, and has to endure an extra half-year on dialysis, putting further strain on his mental health; he does not go back to work. Linda, 68, remains near-blind for several more months until another cornea donor is found. Gillian, Emily and Tim know none of this, but soon come to regret that they did not respect Jack’s dying wish; Tim, in particular, is angry that they were asked to reconsider and challenge a decision his Dad had already made. Emily is haunted by the thought that people might have died because of their decision and wishes that they had given more thought to their decision and its consequences for other people.
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?
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.
Providing more detailed information about recipients at the time of family decision may increase the consent rate by helping to reduce their moral distance from those who might benefit from donation (this latter category can actually include themselves because families can benefit too). This information could include a description of what it is like to wait for an organ, how donation benefitted them and also stories from families of those who donated. Providing this information could also help heighten awareness among staff of the importance of donation. We would not propose providing details of the actual recipients of organs from a given patient, but instead providing a representative sample of those who could benefit, or have benefited. This would avoid practical difficulties and also counter the ethical objections regarding coercion and discrimination. The example used at the start of this paper illustrates a case where the family over-ruled donation, but data on recipients could and should also be provided to families when there is no evidence of donation intention (though the case for providing information on recipients is stronger where the patient was a registered donor). We urge organ donation organisations to consider piloting this and other ways to reduce moral distance for families of potential donors.
Contributors DS had the idea for the article and wrote the first draft with substantial input from DG. Both authors have revised the paper several times.
Competing interests DG is Deputy National Lead for Organ Donation for NHS Blood and Transplant. DS is a member of the Ethics Committee of the British Transplantation Society. Their views do not represent those of these organisations.
Provenance and peer review Not commissioned; externally peer reviewed.