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Permission to refuse blood

DV was 13 years old when osteosarcoma was found in his left lower leg. After chemotherapy he had an above knee amputation; then metastasis removal from both lungs; then further right pulmonary metastasectomy. Prior to surgery he had more than one blood transfusion which caused him ‘huge distress’  resulting in a subsequent diagnosis of post-traumatic stress disorder.

Following these experiences DV began considering affiliation with the Jehovah’s Witnesses and ultimately was baptised into that church, during a period of remission and good health in 2019.

18 months later DV had a further metastatic relapse in the right lung. He was now 17, and faced with a fourth metastasectomy. This was likely to be thoracoscopic but proceeding to thoracotomy if needs be. DV wanted the surgery but only on the basis that in the event of haemorrhage, no blood transfusion would be given. The anaesthetist was not prepared to undertake the anaesthetic on this basis, and after detailed discussion over the following month, a declaration was sought by the Trust from the court that it was lawful and in DV’s best interests not to take steps towards the transfusion of whole blood against his wishes.

The court stressed that the relationship between DV and his parents on the one hand and the clinicians on the other was good; the family praised the clinicians in court. This was ‘...not in any sense a battle between patient and doctors. Everyone agrees that DV should have the surgery, and soon’.

Whilst the judge found that DV had capacity to make the decision to consent for surgery, he agreed with the Trust that as a minor (thus not yet an adult) the court had to make a decision on DV’s behalf with respect to the refusal of blood transfusion. ‘It was not a decision that could be left to DV until he reached 18, because that might be too late’. The court found twelve reasons why avoidance of transfusion would be in DV’s interests, including the proximity to his 18th birthday (8 months); his clear constant and firmly expressed views; his deeply held core beliefs; the risk of further psychological harm; the low risk of haemorrhage, held to be 1%; the propitious site of the pulmonary nodule and aggressive use of blood conservation; the views of his parents, and the practicalities of compelling him to attend hospital.

Taken together, this particular set of facts led to the court approving the treatment plan, avoiding transfusion in the event of life threatening haemorrhage.

This was an unusual decision. Likely, influenced by the joint approach by Trust and family; DV’s age, experience of cancer, and character. Most requests in this context to English courts will continue to be made by hospitals seeking to provide transfusions to this age group. In almost all cases their application for  compulsory transfusion will be declared lawful, to which the parents or child will reluctantly acquiesce. In another 2021 judgement [X (A Child)], it was confirmed by a long line of common law authorities that the court will always take as its starting point the child’s welfare, implying the protection of the child’s life. The court, as a ‘judicial reasonable parent’, is loath to let a child die for want of a blood transfusion.

This judgement makes explicit that until adulthood, children and young people are unable to make the final decision as to whether or not they will refuse life- saving treatment that is clinically indicated. In this relatively non-contentious case, both DV and the hospital were anxious to expedite thoracic surgery. But the hospital was not prepared to rely on a 17 year old’s decision to forgo the use of blood in the way that it would have relied on the decision of a capacitious adult. In the latter situation, the adult’s decision would be determinative, the court having no role in that transaction.

English law remains unchanged. If a child or young person seeks to avoid the use of blood transfusion in a situation where their life is a risk, the decision must be taken by a court if time permits....and it usually will be possible to speak to a High Court judge for this purpose. Almost all cases referred to the court for this reason will result in a decision to transfuse. The decision in DV’s case was unusual, but either way, it is the court that always has the last word.

Robert Wheeler
Department of clinical law, July 2021