Five-year-old Tafida Raqeeb has been on life support at a hospital in London after suffering a brain injury in February. Initially, the decision-makers in the health service had argued that she should be allowed to die and not moved to Genoa in Italy due to there being no hope of her retaining functional brain activity as she is minimally conscious. As The Independent states:
On Thursday, the High Court ruled that they could take their daughter to Italy for further treatment.
As heart-breaking is for families in this terrible position, this is standard fare for ethical decision-makers considering all the factors in long-term care and health predictions in such cases.
However, the decision of the hospital to opt for end the little girl’s life in the absence of any hope for her to regain functional brain activity and consciousness has been challenged.
The BBC reported:
Her mother, solicitor Shelina Begum, and father, construction consultant Mohammed Raqeeb, said doctors in Italy would continue to treat their daughter until she was diagnosed as brain dead.
They argued that Tafida was from a Muslim family and Islamic law said only God could take the decision to end her life.
Following the ruling, Mr Raqeeb said the couple were “thrilled by the judgement”.
Their barrister David Lock QC said the ruling was an “enormous relief” for the couple who he said now “wanted to get on with the transfer”.
Lawyers representing Barts Health NHS Trust said hospital bosses would consider appealing against the ruling.
Barrister Katie Gollop QC told Mr Justice MacDonald that his ruling could have implications for other children….
In his ruling, Mr Justice MacDonald found that “where a child is not in pain and is not aware of his or her parlous situation, these cases can place the objective best interests test under some stress”.
“Tests must be looked for in subjective or highly value laden ethical, moral or religious factors… which mean different things to different people in a diverse, multicultural, multi-faith society,” he said.
Wow. Let’s just dwell on that a second. So if I was a nonreligious parent in a similar situation, I would have no recourse to challenge and win that decision. That final comment from the BBC quote is hugely problematic. A subject’s religion in a pluralistic society gets to influence ethical decisions from hospitals (that are entirely paid for by the pluralist taxpayers).
Indeed, her (parent’s) lawyer argued entirely against a secular approach (from the final judgement publication copy, paragraph 54):
On behalf of the parents, Mr Lock submits that in making its decision the Trust acted unlawfully for the purposes of the Equality Act 2010 ss 19(1) and 19(2) in adopting an entirely secular, medically based analysis based on the essentially secular RCPCH Guidelines which failed to take any, or any proper account of the parents to manifest their religion pursuant to Art 9 of the ECHR and Art 10 of the CFR by continuing the life of their child. Hence, it is submitted that the Trust discriminated against the parents where the Trust was on notice that the withdrawal of treatment was profoundly against the parents’ religious views and preventing the transfer to a country that will care for her in a manner that accords with those views is not a proportionate means of achieving a legitimate aim. Mr Lock further submits that in deciding to refuse the request to transfer Tafida to Italy the Trust also acted unlawfully in that it discriminated against Tafida as compared to a child of Italian nationality in circumstances where the latter would have been returned to Italy by the Trust at the request of his or her parents following initial treatment if he or she fell ill in London, which discrimination was not a proportionate means of achieving a legitimate aim.
Paragraph 169 states:
The health trust had to argue against the parent’s case that religion was less relevant to the 4/5-year-old than to her parents (paragraph 64):
Turning to the principle of the sanctity of life, the parents have, understandably, placed emphasis on the contents of the fatwa secured from the Muslim Council of Europe. Within the context of these proceedings however, the fatwa is simply a valuable restatement of the sanctity of life, a sanctity recognised by all the great religions and also by those who view life through a secular or scientific prism. The sanctity of life is a fundamental, indeed sacred, principle from which there flows a strong presumption in favour of a course of action that will prolong life. Within this context, Tafida’s life has inherent value. It is also of value to Tafida herself, it is precious to her parents, sibling and family and even now it adds, in whatever small and incomplete way, to the body of collective human experience. Tafida is profoundly disabled but a life of disability is of equal value to all other lives.
Whilst accepting that the evidence demonstrates that Tafida had knowledge of her religion and participated in aspects of it, including prayer, the Trust submits that at the age of 4 she can have had no real concept of her mortality or of the possibility of her current situation. Ms Gollop accordingly submits that whilst the court can infer what Tafida thought of her religion generally, it has no information from which to infer he wishes and feelings regarding existing for many years with no or minimal awareness, with the possibility of physical deterioration and the ever present risk of infection.
For the trust, the decision of best interests for Raqeeb was based on health issues. They also concluded that ” she is not now capable of manifesting religion in belief, practice or observance, not being able to exercise these freedoms because she is not free but rather trapped by the small amount of her brain that survives.”
Paragraph 76 is also key:
Within this context, the parents and the maternal aunt submit that, in her current condition, Tafida’s wishes and feelings regarding continuing to receive life-sustaining treatment can be derived from the religious and cultural context in which she was raised and from the evidence before the court that demonstrates that not only was Tafida has been brought up in accordance with the tenets of Islam and but that, on what is submitted to be compelling evidence that prior to her injury she understood the concept of religion and had expressed a clear desire to adhere closely to the Islamic faith, she was developing her own religious identity and value system in this context. Mr Sachdeva acknowledges that Tafida’s capacity to understand the true nature and extent of her religious and cultural background must be limited by her age, but he submits the evidence shows she had a prior understanding and relationship with her Muslim faith. In these circumstances, the parents and the maternal aunt submit that the court can be certain that Tafida would have wanted to live in her current circumstances where the withdrawal of treatment causing death would not be in accordance with the beliefs and values of the religion with which she identified and the community to which she belongs. Accordingly, the parents and maternal aunt submit that the benefit that accrues to Tafida from continued life is in part a spiritual one and is protected by her Art 9 right to freedom of thought, conscience and religion. Within this context, it is submitted that in this case the concept of autonomy (as embodied in the child’s wishes and feelings) and the sanctity of life point to the same result.
There is certainly a debate to be had around when a child becomes religious and able to be an adherent toa religion and its ideals in the eyes of the law.
Much of this really comes down to interpretations of freedom of religion, as set out here:
Freedom of thought, conscience and religion
1. Everyone has the right to freedom of thought, conscience and religion; this right includes freedom to change his religion or belief and freedom, either alone or in community with others and in public or private, to manifest his religion or belief, in worship, teaching, practice and observance.
2. Freedom to manifest one’s religion or beliefs shall be subject only to such limitations as are prescribed by law and are necessary in a democratic society in the interests of public safety, for the protection of public order, health or morals, or for the protection of the rights and freedoms of others.
I could go on with quotes from the judgement, much of which makes interesting reading. You get the point, though. And the point is that religion and religious people are afforded different ethical calculations than the next person. In other words, if I was to rob someone, you could argue a similar logic at play if I, as a member of a certain religion, was entitled to a softer punishment or a different verdict on culpability based on my religious beliefs. In a pluralist society, ethical rulings must be secular to avoid a massive minefield of case-by-case rulings that would be discriminatory.
On the other hand, freedom of religion is a right that allows for such pluralism to flourish “only to such limitations as are prescribed by law and are necessary in a democratic society in the interests of public safety, for the protection of public order, health or morals, or for the protection of the rights and freedoms of others.” The judge has found that the trust must allow Raqeeb’s parents their wishes because there happen to be no such limitation in this case, where they wouldn’t an atheist, on account of their “religion or belief, in worship, teaching, practice and observance”.
Now let’s have a reductio ad absurdum. Imagine the decision has a cost of £10 million. Or £50 million. I wonder whether financial considerations are really the trump variable here. And if so, it’s all fairly moot since morality has a price label and it all comes down to some arbitrary line around which ethical decisions are judged acceptable or not.