As a healthcare worker in Australia, you are bound to encounter a diverse range of people, cultures and beliefs. One of the more familiar examples for many people is that members of Jehovah’s Witness, as part of their faith, cannot accept blood products. This poses unique challenges to the doctors caring for these patients. This was so when baby Theo, whose parents are Jehovah’s Witnesses, was diagnosed with a potentially life-threatening condition that needed major surgery at 6 months. The events that unfolded illustrate how best to handle such an issue.

Theo was born to parents Nick and Clare, who live in a large regional town in Victoria and are practising Jehovah’s Witnesses. After birth Theo showed signs of neonatal jaundice, a yellow discolouration of the skin that was initially thought to be due to breastfeeding. By five weeks though, he was still not gaining weight, and underwent further investigations. Theo was eventually diagnosed with biliary atresia, a condition where the bile duct from the liver is either blocked or absent. Without treatment this disease will lead to liver failure and death, so Theo’s best chance was to undergo a liver transplant.

As Nick recalls, “To be told [Theo] had a life-threatening disease is pretty big, and then coming down to Melbourne on the same day was pretty traumatic.” As Jehovah’s Witnesses, blood transfusion is “something [they] feel very strongly about”, as it is explained in the scriptures. “We want the best care possible, but without blood.”

The Jehovah’s Witness position on blood transfusions stems from their interpretation of several verses in the Bible. In Genesis 9:4 Noah is told by God “But you must not eat meat that has its lifeblood still in it”. This extends all the way to the New Testament, where Acts 15:28, 29 reads “You are to abstain from food sacrificed to idols, from blood…” Members of faith believe that as over time God’s standard hasn’t changed, it is their responsibility to God not to misuse blood by receiving transfusions.

In practice, this means a member of Jehovah’s Witness would not accept a transfusion of whole blood and its components: red blood cells, white blood cells, platelets and plasma. However, there are certain fractions of blood that fall within a grey area. Then it becomes a matter of personal choice whether an individual accepts these or not. These may include proteins such as interferon, certain clotting factors and immunoglobulin.

The Hospital Liaison Committee for Jehovah’s Witnesses plays an important role in these situations. They help inform the parents about how certain procedures fit in with their faith and explain the legal context in which they can work in. They also assist the medical team by explaining which particular treatments can be used within restrictions of their faith. There is a large online resource for medical practitioners that can be found here , containing peer-reviewed articles investigating alternatives to blood transfusion.

Professor Paul Monagle, a Haematologist and Head of the Department of Paediatrics, University of Melbourne, at the Royal Children’s Hospital, was asked to consult in Theo’s case. “Doing a transplant on a 6 month old baby – the feeling was this was going to be a high-risk transplant.” Nevertheless, “from our point of view, we would be very respectful of people’s wishes”

“The Haematology Department from day one offered alternatives,” said Clare, “and in Theo’s case even changed the protocol for when blood is administered, so we were grateful for that.” The medical team took the parents’ wishes seriously and there was clear communication about the length the medical team would go to accommodate those wishes. Then it was about ensuring everyone was aware of what had been decided. “Everyone was really supportive and no one judged us for our beliefs. They just wanted to help us get Theo better.”

Prof Monagle explains there was discussion about possible changes to the standard protocol for transplantation surgery, given the procedure’s high risk. “There was a question about the use of FFP (fresh frozen plasma) component, and whether we deviated from protocol or used a substitute.” The medical team decided not to use FFP as per the standard protocol. “After a conversation everyone was on board,” Prof Monagle continued, “and the surgeons thought they could get through the surgery.”

What is perhaps lost in all of this is a discussion about the actual effectiveness of blood transfusions. The National Blood Authority, the Australian agency that coordinates supply of blood and blood products, produced a video on their website querying the practice of patient blood management. In the video it is mentioned that the risks of blood transfusions may outweigh the benefits, as there have been recent studies showing increased morbidity and mortality in the intensive care unit and in trauma and surgical patients who receive blood transfusions.

Despite the lack of evidence around transfusion medicine, Prof Monagle notes “doctors would rather do something than not do something and be criticised” for not sticking with the status quo. This is a recurrent theme in the heavily scrutinised atmosphere of modern medicine; many health professionals are either afraid or unwilling to question conventional wisdom even though it may not stand up to the test of evidence. In fact, the position of the Jehovah’s Witnesses has driven much of the research finding alternative interventions to blood.

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However, current knowledge suggests that in certain circumstances a blood transfusion may be the only option to ensure that a patient survives. What happens if the parents’ wishes are then at odds with doctors’ plans? Prof Monagle states that “In the paediatric setting we hold the opinion that the views of the parents may not be the views of the child. If the child is about to die without a blood transfusion then we will do the transfusion.” The Human Tissue Act 1982 provides the legal framework for this, where two doctors are required to make the decision if a child is in danger of dying. Prof Monagle explains that one would always try to bring the parents along with you in a partnership discussion, and to have to resort to legal intervention is in many respects a failure of our communication.

In Theo’s case the transplant surgery was successful but post-operatively he became compromised when his haemoglobin levels dropped very low. As a consequence the graft was at risk. Prof Monagle agreed that a transfusion was needed immediately, so rang Nick and Clare to tell them of the team’s decision. Because of the previous conversations they had, Nick and Clare knew that every option had been exhausted and ultimately wanted to keep their baby alive. “We did what was in the best interests of the baby,” Prof Monagle explains, “so one transfusion was given. It was important to establish what the family wanted, and being supportive of those views, but not allowing Theo to die.”

Although you might picture some doctors gloating after needing to deliver the blood transfusion, the scene had a very different atmosphere. “Everyone in the team was gutted that they had to give a blood transfusion,” Clare says, “as they were doing everything to avoid it”.

Both the medical team and parents had the best interests of the child at heart, but because of different perspectives on the world, there were different priorities to consider. In this case it was important that the parents’ convictions were not dismissed by the medical team, but regarded as a vital consideration in their planning. Similar cases have required legal intervention, but a dedication to clear communication, support and flexibility on both sides in this case avoided any acrimony. It was not simply about tolerance of each other’s beliefs – it needed further cooperation to get the best outcome for the patient, a lesson that can be applied to many circumstances.

It has been almost a year since the operation. Theo is now a healthy, happy toddler with a new liver, who can look forward to the rest of his life.