Nucleoside Therapy Case Summary

DISCUSSION: Legally under English laws, when a patient is not competent and lacks the capacity to make decisions, they must be made on his behalf, in his best interests. This was evident in the case of Charlie. According to (Children’s Act 1989), the parents presumes the authority to decide on the best interests of their minor and make decisions on behalf of their children. It was rightly so to have led to believe that the nucleoside therapy was not invasive and caused no severe damage to the TK2 deficient patients to whom it had been administered. In that case, why not give Charlie that chance and what could he possible loose from the treatment. However, it was prudent to realise the rationale of best interests in the
scope of extending life versus the expected burden and risks of treatment and the quality of life sustained. Medical staff at GOSH were convinced that continued treatment did not serve in his best interests, with similar opinions from other specialists in the field.
More so, it was difficult to establish If Charlie was experiencing any pain due to the severity of his condition. Doctors did not have a positive reason to continue ventilation unless it served a greater purpose, that is to reverse his condition and quality of life. Merely being alive was not sufficient. Although it is a legal and moral duty of the parents to make informed decisions on the treatment pursued for their child’s best interests. If it appears, however, that the proposed course of action can endanger and are contrary to the child’s best interests, it is a moral responsibility of the medical team to intervene. The medical team at GOSH were observing the principle of non-maleficence to avoid any harm to Charlie due to his deteriorating condition which was only worsening by keeping him
alive. The case was extensively analysed in social media, with the majority in favour of the parents decision to allow them to pursue experimental treatment. Opinion stemmed from the fact that the state had no rights to snatch away the rights and responsibilities of the parents to decide for their children’s best interests. The case became more complicated when it magnified to an international scale and involved prominent figures such as President Trump, the Vatican and Theresa May. As the case went viral, the watching world felt entitled to express an opinion without being closely aware or informed about the case. The extensive coverage by the media was not helpful and according to one commentator that inaccurate reporting in the USA on the situation “reinforced the parental refusal to accept this tragic situation” (Phillips 2017). This changed the focus from the tragedy of a terminally ill child into a dialogue about parental rights that was fuelled by the funds raised by Charlie’s parents and bolstered by media (GoFundme 2017). Media sources such as the daily mail provided an extensive review of the court proceedings, however, they omitted the lack of research the suggested treatment had gone through (Moore and Greenhill 2017). One of the medical experts also asserted that there was a difference in philosophy of treatment in the USA and in the UK. She stated that in the USA any medical treatment will be attempted so long as funding is available, whilst her approach was centred on the best interests of the patient (Great Ormond Street Hospital vs Yates and others [2017] EWHC 972 (Fam) [90]). It was interesting to realise that Dr. Hirano, who was the only person in this case favouring the parents decision and assure Charlie’s best interests in preserving life by providing nucleoside therapy, had never examined him even once from the start of his admission at GOSH. Clearly, his failure to engage fully with all the available medical evidence before advising the parents and court was unreasonable (Jayaram 2017). On 13th July 2017, Dr. Hirano stated that not only had he not visited Charlie in the hospital, but he had not even viewed his recent medical records or second opinions from medical experts around the world including the judge’s report on 11th April 2017. It was thus difficult to ascertain Dr. Hirano’s motive in the way of financial gain or his curiosity in advancing medical research by using Charlie as a subject. Looking at the case from Charlie’s point of view through his guardian, Ms.
Butler-Cole concluded that “it is not in Charlie’s best interests to travel to America to receive nucleoside therapy. This is not pioneering or life-saving treatment, but purely an experimental process with no real prospect of improving Charlie’s condition or quality of life” (Great Ormond Street Hospital v Yates and others [2017] EWHC 972 (Fam) [117]). GOSH had also asserted that funding was never an issue and if it considered nucleoside therapy was of any benefit to Charlie, it would have pursued the treatment. This was contrary to the view of many who believed that due to single payer healthcare systems in the UK, the state failed to support and exercise the rights of the parents in pursuing the treatment of their
child. The hope and treatment for Charlie’s best interest would have been better considered with the more accurate description of “experimental”. Significantly as noted by the judge, the legal test that he had to apply is “…what is in Charlie’s best interests not what is in the best interests of medical experimentation” (Great Ormond Street Hospital v Yates and others [2017] EWHC 972 (Fam). As quoted by (Richards 2016) that extensive testing, research ethics and regulations are in place to ensure the safety and effectiveness of the treatments when received by the patients. Charlie’s parents were made to believe that if they could raise the money to travel to the USA, then their son would have hope for surviving. The willingness of Dr. Hirano to offer experimental treatment purely based on the availability of funding raises ethical questions on the anticipated outcomes. Therefore, accusing the law in preventing innovative medicine in Charlie’s best interest is not justified.