The issue of when a child is mature enough to consent to various decisions is a complicated one and this debate focusses on just one part; those decisions that relate to their medical well-being. There are a number of areas where the consent of parents is required – surgery, transplants, blood transfusion and others where the child is not able to give consent because they are too young; circumcision being one obvious example. Many jurisdictions stress that the child should be involved wherever possible but, the decision lies with the parents, or in their absence, a court.
Put simply, the doctor is free to use their medical judgement in an emergency situation – an arrival in an emergency room or accident and emergency department but where there is time available to ask for consent it must be sought from both the young person and their parents.
For example the General Medical Council in the UK sets out;
22. You can provide medical treatment to a child or young person with their consent if they are competent, or with the consent of a parent or the court.4 You can provide emergency treatment without consent to save the life of, or prevent serious deterioration in the health of, a child or young person.
23. You should involve children and young people as much as possible in decisions about their care, even when they are not able to make decisions on their own.[i]
In many case, parents are happy to take the advice of doctors for their children, just as they would for themselves. However, and this is the focus of this debate, there are occasions where there is a conflict between the values or beliefs of the parent(s) and the general consensus of medical opinion. The contention of some doctors is that it is unfair for the parents to make a decision, that could cost the child her life, and that she may not have taken that decision later in life.
This is further complicated by the fact that many children, especially younger children, share the views of their parents, somewhat uncritically. Therefore, the doctor and the courts face the question of whether the doctor is able to overrule the opinions of both, let us say, a teenager and their parents. This debate will focus on the issue of blood transfusion for teenage children of parents who are members of the Jehovah’s Witnesses (JWs).
In 1945, a ‘blood ban’ was introduced and, since 1961, the willing acceptance of transfused blood by an unrepentant member of the faith has been grounds for expulsion from the religion[ii]. Clearly the issue here, for the believer is one of conscience. Their refusal of blood relates to the group’s interpretation of Acts 15: 28, 29[iii].
Set against that is the medical reality that a blood transfusion may be vital for several life-saving procedures and are an important part of many surgeries. The use of blood transfusions dates from the early-nineteenth century but only came into widespread use is the 1930s (Soviet Union) and 1940 (US and then other nations) so the position of JWs has been relatively consistent since the inception of the technology – although recent changes have continued to reject full blood transfusion but have accepted plasma products[iv].
The issue of whether the rejection of transfused blood is in and of itself sensible is irrelevant both legally and in this debate.. Nobody disputes that the lack of medical action is a risk in medical terms – and one that may lead to death. The issue for debate is whether the religious views of the parents or the medical opinion of the doctors should have primacy in determining the correct course of action. The debate is about who should have the right to decide, not what that decision should be. This is considered as an issue of conscience, the implications for the soul of the patient are not considered here.
Although this debate relates to blood transfusion and JWs – we will assume that proposition have defined it as such – it’s principles would apply to other, similar, disputes such as whether parents have the right to reject organs from a person of another race or reject drugs that have been tested on animals.
[ii] ^ Muramoto, O. "Bioethical aspects of the recent changes in the policy of refusal of blood by Jehovah's Witnesses". (January 6, 2001)
[iii] 28 It seemed good to the Holy Spirit and to us not to burden you with anything beyond the following requirements: 29 You are to abstain from food sacrificed to idols, from blood, from the meat of strangled animals and from sexual immorality. You will do well to avoid these things. (NIV)
[iv] Sniesinski et al.; Chen, EP; Levy, JH; Szlam, F; Tanaka, KA (April 2007). "Coagulopathy After Cardiopulmonary Bypass in Jehovah's Witness Patients: Management of Two Cases Using Fractionated Components and Factor VIIa" (PDF). Anesthesia & Analgesia 104 (4): 763–5. doi:10.1213/01.ane.0000250913.45299.f3. PMID 17377078. Retrieved 2008-12-30
The primary duty placed on doctors, by society and themselves, is the preservation of life. In pursuing this goal they use not only medicines and scalpels but, first and foremost, their judgement. In many countries practising medics swear an oath to this effect; although these vary greatly in detail, they are well encapsulated by the Declaration of Geneva[i], the critical clause of which for the purpose of this debate is “The health of my patient will be my first consideration”.
Asking doctors to take other considerations into account is not only a breach of their professional integrity, it also poses grave risks for society. They are being asked, in this situation, to allow the opinions of a third party take precedence over the wellbeing of their patient. If this were a younger relative with their eye on an inheritance or a distant sibling seeking to settle an old score, the dangers would be all too apparent. In this instance, the motivation may be well-intentioned but it is no more reasonable. Allowing relatives to say “well, what I think you should do is X” in defiance of medical opinion is fraught with dangers. If a relative decided on behalf of a patient to reject chemotherapy in favour of prayer or expressed their preference for Shamanic rituals rather than medication, why not let them. After all their intent is just as compassionate and their reasoning as solid.
Proposition have made a lovely argument, except for one small detail, nobody is suggesting prayer or ritual as a replacement for medical attention. The issue here, as defined by proposition, is whether JW parents should be able to reject blood transfusions on behalf of their child. No more than that; no witchcraft wards or miracle cures. This is just a consideration of whether, given the time for discussion and consideration, the religious views of parents and, usually, their child should be able to say that perspectives other than a strictly medical one should be considered in addressing a complex human situation.
Nobody is questioning the rights of adults to take actions in accordance with their faith, even when these may cause them some personal harm. Their beliefs may well lead them to conclusions that others might consider reckless but that is their concern. However, when those actions impact others in society, it is a matter for social concern and, frequently, the intervention of the law. If that harm is caused to those who cannot resist or who are incapable of responding, intervention is required. The law explicitly includes children in this category. We do not, for example, allow religious practices such as sacrifice or torture in pursuit of a religious end, however religiously convicted the parents might be. The case of Kristy Bamu, murdered by his parents, practitioners of voodoo, in the belief he was a witch, is just one such example[i].
We expect the legal and medical professions to accord particular protection to children against the actions of others that could harm them including, in extremis, their parents. It is difficult to see what could be a more flagrant example of possible harm than allowing your child to die when an available remedy could save their life.
[i] Sue Reid. "Britain's voodoo killers: This week a minister warned of a wave of child abuse and killings linked to witchcraft. Alarmist? This investigation suggests otherwise." Daily Mail, 17 August 2012.
The case given is quite different. The parents directly acted to cause harm to their child, inflicting a series of violent beatings over a sustained period. Such a course of action is already illegal and they were rightly convicted and punished. In this instance, a course of action is being avoided with the best interest of the child uppermost in the minds of the parents.
The protection of children is treated differently from how we address the needs of adults. The very fact that their parents’ consent for procedures is required acknowledges that fact. We further accept that when that consent is questionable - when the parents may not be acting in the best interests of the child - that right may be revoked.
In most instances of such revocation, if the parent is an addict or mentally incapable of a particular decision, such a decision can be determined well in advance. However, in this instance, the status of the parent has not previously been an issue. However, the same principles should surely apply. For example, if a parent has been denied access rights to their child by a court, they would have no standing in making any such decision. If their child is a ward of the court, the same would apply. Society has a general duty to at least keep children alive until they reach the age of majority and remove all possible obstacles to that happening. We do not allow parents to give their children the right to pursue other harmful activities or to take unnecessary risks with their safety; the principle of a presumption of protection would also apply here.
We fully accept that children are treated differently in the eyes of the law. However, the very fact that proposition allows for that exceptionalism must require them to acknowledge that the role of the parent is given a status different from any other in society. We acknowledge their right to make decisions in the stead of their child, fully accepting that those decisions have enormous implications. We accept that parents take life and death decisions for their children on a regular basis and we must trust them to do so. Society respects the rights of parents to keep their children safe in no end of perilous situations, and when their judgement is wrong, it is a matter for regret, not legislation.
Most cultures respect the right of adults to practice the religious observances of their choosing and to raise their children within that tradition. The prohibition of blood transfusion is a part of the observances of JWs and is worthy of the respect that might be expected of other religiously motivated decisions.
There are other religious observances that have medical implications, for example the rejection of certain vaccines, but society accepts that it is appropriate for parents to inculcate their children with the values in the practical outworking of their faith[i].
The refusal to accept blood products may seem reckless to outsiders but there is no suggestion that parents take their decision lightly; it would be difficult to conceive of how they would do so. What then is the alternative? Allowing the state to sanction which religions are acceptable or which practices of those religions? Such an act would strike not only at the freedom of religious practice but at the very principle of freedom of conscience more generally. If the state can challenge these views because it does not like the consequences, then why not social or political opinions? This is the first step on a road to tyranny.
We frequently set limits not on religious beliefs but on their practices. The two determinant used there are the possible harm to others and whether the person being harmed can be deemed ‘capable’ in a legal sense. There can be no doubt that the decision to refuse available medical treatment causes harm, that is beyond dispute. The issue then is whether the person harmed, the child, can be considered capable. Legally they cannot, they cannot enter into a contract, they cannot marry or vote, legally they are not allowed to make many decisions because they are not full members of society until they are adults. It is worth noting that if the child is not deemed competent to make a decision regarding their own healthcare, it is difficult to see how their determination of their own religious choices can be assumed as authoritative. So the child cannot make the decision and the parents actions would cause harm to the child.
In the light of this, the only remaining opinion is that of the doctor.
Societies recognise the importance of parenting and the enormous responsibilities that go with it. In light of these, the parent is allowed broad discretion in determining how those responsibilities are best exercised. It seems likely that a parent in a situation such as this is likely to undertake a great deal more soul searching and thought than could be expected of an external party. This is a decision that is made in good conscience and, as things stand in most countries, within the law.
Medical experts and others may well have opinions, frequently strongly held, but they are just that – opinions. The very fact that this issue has come to court, been heard and judges have reached differing decisions demonstrates that this is not an argument against fact. The opinions of parents are often supported by expert and legal authority. The parents can be expected to consider these opinions among many but must be left free to act in what they believe is the best interest of the child.
Parental responsibility is a duty, not a right. Society trusts parents to act in the interests of their child but does not do so unreservedly. Where those actions lead directly to a provable harm, we consider it either neglect or abuse of the child and the parental privileges are revoked. No matter how earnestly the parent may believe it is in the child’s best interest, they may not send them out to work in injurious conditions, they may not allow or encourage them to engage in sexual conduct, they may not allow them to use armaments or certain drugs before a certain age. Because these things cause harm to the child and that is a breach of the duty of care entrusted to the parent by wider society. The same is true of denying them medical treatment.
The law is a cumbersome tool to use in matters that relate to family life; this can be seen in the reluctance to legislate too much in this area. In those areas that require massive social interaction and agreement, such as education, there is a need for legislation but even that frequently proves to be controversial and many parents take the opportunity to opt out. This is particularly true in the moral, ethical and religious education of children as it is recognised, both implicitly and explicitly that this is a matter for the family.
How then is this different? That there are repercussions to the decisions individuals make regarding their religious beliefs is beyond question but we still leave them free to make them – the pacifist may go to prison but cannot be compelled to fight.
The same principle applies here; decisions based on deep religious conviction are a matter for the individual or, in this case, their family. The views of the family are respected in the choice of whether to prolong the life of someone in a permanent vegetative state, regardless of medical opinion about the individual case. Many consider PVS to be “more dead than dead”.[i] Despite this religious views on the matter, which often compare ‘pulling the plug’ to assisting suicide, are given a level of respect that cannot be justified by the available medical evidence. Although inverted, approaching the issue of the relationship between faith and death from the opposite angle – keeping the dead ‘alive’ rather than allowing the living to die – the same level of respect for the beliefs involved would seem to apply.
[i] Tune, Lee, “Vegetative State Seen as More Dead than the Dead, UMD Study Finds”, University of Maryland, 22 August 2011, http://newsdesk.umd.edu/sociss/release.cfm?ArticleID=2484
Society does intervene in the private sphere to prevent harm. Domestic abuse is simply the most obvious example but parents are also responsible in most societies for ensuring their children receive an education in accordance with the law. If a parent were to deny their children food when it was available, it would be neglect. If they were to deny them shelter and protection when available, it would be neglect or abuse. It is difficult to see how denying them healthcare, when available, would not fall into the same category.
General Medical Council, “0-18 years guidance”, http://www.gmc-uk.org/guidance/ethical_guidance/children_guidance_contents.asp
Muramoto, O. "Bioethical aspects of the recent changes in the policy of refusal of blood by Jehovah's Witnesses". BMJ 322(7277), pp.37-39, January 6, 2001, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1119307/
Reid, Sue, “Britain's voodoo killers: This week a minister warned of a wave of child abuse and killings linked to witchcraft. Alarmist? This investigation suggests otherwise.” Daily Mail, 17 August 2012. http://www.dailymail.co.uk/news/article-2188983/Britains-voodoo-killers-This-week-minister-warned-wave-child-abuse-killings-linked-witchcraft-Alarmist-This-investigation-suggests-otherwise.html#ixzz2NcJWzlwP
Sniesinski et al.; Chen, EP; Levy, JH; Szlam, F; Tanaka, KA, "Coagulopathy After Cardiopulmonary Bypass in Jehovah's Witness Patients: Management of Two Cases Using Fractionated Components and Factor VIIa" Anesthesia & Analgesia 104 (4): 763–5, April 2007. http://www.freeminds.org/doctrine/sniecinski_analgesia2.pdf
Steinhauer. Jennifer, “Public Health Risk Seen as Parents Reject Vaccines.” New York Times. 21 March 2008. http://www.nytimes.com/2008/03/21/us/21vaccine.html?_r=0
Tune, Lee, “Vegetative State Seen as More Dead than the Dead, UMD Study Finds”, University of Maryland, 22 August 2011, http://newsdesk.umd.edu/sociss/release.cfm?ArticleID=2484
World Medical Association. “WMA Declaration of Geneva”, 2006. http://www.wma.net/en/30publications/10policies/g1/index.html