Guest Post: David Shaw & Dale Gardiner
Paper: Increasing organ donation rates by revealing recipient details to families of potential donors
Families often don’t allow their deceased relatives to donate organs, even when the patient was a registered organ donor. Even when the donation process is explained sensitively by specialist nurses, families can focus much more on the potential stress caused by donation than on the potential benefits of donation. In our article we suggest that more emphasis should be placed on the potential benefits to recipients – and that this can be done by revealing information about recipients to families who are considering whether to allow donation to go ahead. This could help to overcome family’s ‘moral distance’ from the potential consequences of their actions.
In the UK, if a person is a registered organ donor, families have no right to ‘overule’ donation, and their agreement is not legally required. But while initial objections can sometimes be overcome, healthcare professionals will not persist with persuading families to agree where there is strong resistance. When a deceased patient was not a registered organ donor, it is up to the family to decide whether donation should go ahead. In both types of case, families are only told that donation could benefit patients in need of organs. We think that this is not enough. Families must be given enough information so they can understand the full consequences of their decision: that several patients might die if donation does not go ahead. To achieve this families should be told basic information about potential recipients.
It might be argued that families who have just lost a relative will be too distressed to attempt this type of information provision; making it clear that several patients could die if the family refuses to permit donation could upset them even more. There are at least two responses to this line of argument. First, if they have to make a decision they deserve to know the potential consequences of it. Second, people who are upset are more likely to make decisions based on emotion rather than reason, and if the family later finds out that their relative’s death could have saved lives they might deeply regret the missed opportunity. The consequences of the decision are not just for the benefit of organ recipients, as families of deceased donors often find that donation can bring comfort in their bereavement.
But even if information sharing is generally good in this context, isn’t it emotional blackmail to tell a family that refusal to donate will lead to the death of a 22-year-old student called Julie (for example)? We do not think so. If it’s true that a 22-year old student called Julie is likely to die without an organ being donated very soon, then that fact is relevant to any decision concerning an organ that might save her. Disclosure of this information might well make people emotional, but that does not make it blackmail.
Another objection is that sharing information about potential recipients might allow families to discriminate in a way that is contrary to NHS principle of equality of opportunity. For example, a family might consent if the prospective recipients were young, but not if they were older – or if recipients were slim, but not obese. While this might seem unlikely, it is a potential problem.
As well as these ethical issues, there is a more serious practical objection. Only once a ‘matching run’ has been done using the donor’s blood can doctors know who the potential recipients are. But matching runs are done only after families have consented. This does pose a problem for our initial proposal: how can we share information about recipients to gain consent if consent is needed to know who those recipients are?
Fortunately, there is a solution that solves this practical problem as well as the problems of discrimination and emotional blackmail. Rather than sharing details of actual patients at the top of the waiting list, families could be given generic information about a representative sample of people near the top of the waiting list. This would mean that no matching run would be required prior to discussion with families. It also means that families would not be able to discriminate against any specific patients, because the details would not represent patients currently in need of an organ. And the worry about emotional blackmail would be dealt with because families would know that the people they are learning about will not die if they decide not to go ahead with donation. In fact, photographs of potential or previous recipients could even be used for the same reason.
It is terrible to lose a family member, and considering whether to permit organ donation can be very difficult. But families in this situation should be given all relevant information to inform their choice. As well as details about potential recipients themselves, another relevant fact is that those in need of organs might themselves be the focus of grieving families if donation does not go ahead. Overcoming moral distance requires moral imagination. We hope our proposal, if implemented, can give families the necessary information for them to make a decision whose consequences they will be able to support in the months and years that follow the loss of their relative.