Blood, Beliefs, Religion and Medicine: Separating Right Choices from Genuine Ones

by Dr. Nileema Conlon Vaswani in

The thought of a twenty-two year old mother dying soon after giving birth to twins is enough to make anyone sad. The thought that this incident was probably avoidable is even more disturbing. But ought our moral judgements to be solely outcome based or are there overriding moral considerations such as the beliefs and choices of the individual that can determine what is right and wrong?

Emma Gough, aged only twenty-two, gave birth to twins and then died for lack of a blood transfusion. As a Jehovah's Witness, she believed that it was wrong to undergo a blood transfusion, even a life-saving one, and had signed a form to indicate her wishes. As per the law, medical professionals are obliged to honour the wishes of an adult Jehovah's Witness even if the individual's refusal of a blood transfusion will result in her death. Undoubtedly, Emma's story is a sad one but is her death also wrong?

There are three main elements to this case. The first is that the twins will grow up without a mother under circumstances that were, arguably, avoidable. A blood transfusion may not have been guaranteed to save Emma but she would probably have survived. The second element debates the interpretation of the Bible on the basis of which Jehovah's Witnesses make their decisions about blood products. The third element, and the one that we will focus on, moves away from the idea of whether the Bible has been misinterpreted by Jehovah's Witnesses and debates instead the notion of a genuine belief rather than a belief that is right or wrong.

Jehovah's Witnesses are often criticised because it is alleged that they have misinterpreted the teachings of the Bible but much of any religion is interpretation. It is right to those who believe it and often wrong to those who do not. It is, therefore, more helpful to debate the genuineness of a belief than to debate the rightness of it. To debate whether or not Jehovah's Witnesses are right in believing that the Bible disallows blood transfusions is unhelpful because to them they are right.

The genuineness of Emma Gough's beliefs rather than the rightness of them, is central to determining if what happened in her case is morally right or wrong. In broad terms, for Emma to have held a genuine belief she should have held it freely, i.e., without coercion. It is only on the basis of a genuine belief, regardless of the content of the belief, that a genuine decision can be made. For Emma to have made a genuine decision on the basis of her genuine belief, she ought also to have understood the connection between her beliefs and the decisions she was making on the basis of those beliefs. For example, it is possible that her belief that it was wrong to accept a blood transfusion might have been a genuine one but for her to have made a genuine decision not to accept one, she needed to also understand the implications of not accepting the blood transfusion. It is often possible to hold strong beliefs that are genuine and yet sometimes if we had to make decisions on the basis of those beliefs, we might alter them. Clearly, this did not happen in Emma's case but it is important to distinguish between the mere holding of a belief and making a decision on its basis.

An individual also needs to be competent and have the necessary information to make a decision. There is no reason to believe that Emma was either incompetent or uninformed. But part of the problem with information is that sometimes it is best available through experience. Emma Gough might have held a genuine belief, and in the absence of information that suggests coercion or brainwashing, we must assume that this was the case. Her decision to refuse a blood transfusion might also have been genuine. However, having never had the experience of this scenario previously, although she knew that she might die without a blood transfusion, she may not have been informed via experience and thereby have understood the true force of what she was requesting.

This point is well illustrated by the case of Ms Underhill, an ex-Jehovah's witness, who found herself in a similar situation a few years ago. A Jehovah's Witness at the time, she, like Emma, had signed the paperwork that allowed her to refuse a blood transfusion. Unlike Emma, she survived and was able to be a mother to her children. After reading about Emma's case, she was horrified and now wishes for the law to be changed to allow patients to be treated against their wishes. This is a problematic idea if patients are competent and informed because there would be no other basis other than incompetence to override an adult patient's wishes. However, Ms Underhill's horror at Emma's case is based largely on the realisation that she could well have suffered the same fate. Although Ms Underhill's decision was informed and competent at the time when she made it, by reading about a case that was so close to her own situation, she now has information via experience and not just information, even if it is via another person's experience. Clearly, if she were faced with the same decision again, she would undergo a blood transfusion.

Information via experience is an important moral consideration in discussing cases such as Emma Gough's. For a patient who is competent and informed, the only possible gap in decision-making is information that is available only via experience. While it is worth bearing this in mind, it is also important to remember that most decisions are made without having been in similar situations previously or without knowing those who have had similar experiences. For this reason, as long as a belief is genuine and the decision that it leads to a genuine one, it does not matter if the beliefs or the decisions are right or wrong to anyone other than those who hold or make them.