Should parents be asked to consent for life-saving paediatric interventions?

Abstract

Informed consent, when given by proxy, has limitations: chiefly, it must be made in the interest of the patient. Here we critique the standard approach to parental consent, as present in Canada and the UK. Parents are often asked for consent, but are not given the authority to refuse medically beneficial treatment in many situations. This prompts the question of whether it is possible for someone to consent if they cannot refuse. We present two alternative and philosophically more consistent frameworks for paediatric proxy consent. The first allows meaningful consent (parents may say ‘yes’ or ‘no’ to treatment), provided that parents are medically informed/competent and intend the health and well-being of their child. In the second solution, medical practitioners or the state consent for treatment, with parents only being consulted to help give insight to the child’s circumstances. While we contend that either of these two options is superior to the insincerity of the present paradigm, we suggest that the first solution is preferable.

Introduction

Proxy consent, especially for paediatric life-saving procedures, is a controversial and tangled matter. These challenges ultimately result from the fact that paediatric consent is given on behalf of an individual who has not yet had the opportunity to develop a mature sense of life and the world – an understanding upon which critical decisions are made. Thus, in paediatric consent decisions, others (whether parents/guardians or the state) inherently impose their philosophies and worldviews on children, exposing them to potentially life-altering decisions that their later selves may not have made.

Throughout the debate on parental proxy consent, various concepts have evolved to provide theoretical anchors to help address the problem. Chief among these concepts are ‘best interest’, ‘zone of parental discretion’, ‘the harm principle’, and the application of what is in essence a shared model of normative power.^1,2 ‘Best interest’ refers to making decisions that all things considered would provide the greatest benefit to the patient, and does not only take into account potential health benefits and avoidance of suffering, but also the wider considerations that are relevant to the patient, such as their religious, moral and cultural beliefs. ‘Zone of parental discretion’ is sometimes referred to as a morally legitimate space where parents are given power to make a wide range of decisions without a need for justification (a staple example being vaccination refusal). The ‘harm principle’ allows for ‘good enough’ parenting where parental decisions, in short, should not cause the child more harm than benefit, or at least not impose serious harm.^2,3

Here we do not aim to question the legal validity of the present standard. Instead, we note some philosophical problems that arise from the application of the current standard and propose policy changes that might mitigate them. We largely follow Hauerwas’ account of the role of parents in bringing up children ⁴ without denying the parens patriae role of the Crown. ⁵ Throughout the work we will concentrate on the classical example of Jehovah’s Witness (JW) parents refusing a blood transfusion for their child and supplement it with vaccination refusal scenarios. Briefly, we reject the concept of the zone of parental discretion and suggest that competent and caring parents are the best presumptive judges of their child’s best interest.

Consent

Instinctively, it seems appropriate for physicians to ask parents for consent before performing medical interventions on their children. Reality is more complicated. The case where a JW child is critically anemic and the child’s parents refuse consent for a blood transfusion on religious grounds is a staple example. Canadian federal and provincial courts have repeatedly found that the state’s obligation to protect children in life-threatening situations supersedes such religious rights.^6–11 The Canadian judicial milieu is emblematic and archetypal of many jurisdictions, including in the United States (US) and the United Kingdom (UK).^6,12 In 1944, the US Supreme Court made a foundation ruling on the rights of parents to extend their religious beliefs to their children: ‘Parents may be free to become martyrs themselves. But it does not follow that they are free, in identical circumstances, to make martyrs of their children.’ ¹³ The outlined transfusion dilemma is a perennial challenge, with a judge in the UK recently ordering a blood transfusion for a child of JW parents. ¹⁴

The Canadian Medical Protective Association (CMPA; created by Canadian parliament to provide physicians with legal advice and encourage honourable medical practice) has given physicians instructions to help navigate the predicament of transfusions for JW minors. They state that in order to consent an individual must, ‘understand the nature and anticipated effect of proposed treatment and available alternatives including the consequences of no treatment.’ ¹⁵ Young children do not possess this understanding and guardians must make such decisions on their behalf, but ‘parents do not have the authority to refuse needed treatment on behalf of their children.’ ^{15 a} If parents refuse consent for their child’s transfusion, measures are taken to temporarily transfer custody to welfare authorities, who will ‘consent to the proposed treatment over the objections of the parents.’ ¹⁵ In The UK and Italy, the courts have effected the same outcome without the temporary transfer of custody to welfare authorities.^11,12 This provokes a question: can parents meaningfully consent if they cannot refuse treatment?

A thought experiment

Along with the CMPA and Canadian law, we agree that parents, physicians, and the state are obliged to seek medically beneficial treatment for children and to intend their health. However, it does not necessarily follow that they must implement whatever treatment is identified as being medically beneficial. Suppose that Canada neighboured a country that harvested blood products from prisoners (a situation not dissimilar from what is reported about China’s organ supply chain). ¹⁶ Due to supply shortages in Canada, only this morally-tainted blood is available. ^b Should parents be obligated to consent to such life-saving blood products for their children, despite their unethical sourcing (or else have the state administer the blood products anyway)? If one followed the CMPA’s statement, the answer seems ‘yes’.

Is health the supreme good?

The presumption that physical health is more important than other goods is not axiomatic, ¹⁷ having been countered throughout history; ‘…[H]e is mistaken in thinking that any ills affecting either his person or his property are more serious than those affecting his soul,’ to quote the Roman statesman Cicero. ¹⁸ Though often silent and tacit, there are moral and cultural aspects to the consent process. In the UK, this has been in principle recognised by courts, which acknowledge that ‘broader ethical, social, moral and welfare consideration’, are important considerations in best interest decisions and, as such, health does not trump other factors. ^{19 c} The challenge remains how (and if) to incorporate those broader considerations into the consent process for children, who do not possess the maturity to properly engage in moral and cultural questions.

We outline two possible solutions to the problem of paediatric proxy consent.

Solution 1

Parents receive meaningful decision-making powers. Here, if a child’s parents are 1) prima facie caring, 2) can meaningfully engage with the relevant medical evidence for benefit and harm, and 3) intend the child’s health, they are considered capable of both giving and refusing consent to a procedure. Parents fulfilling these three conditions are deemed able to determine what is in the best interests of their child – a complex cultural and moral decision. ⁵ There is undeniably a degree of subjectivity in all three of these criteria. It is not easy, for instance, to neatly define what engaging with medical information and evidence means. However, the same could be true of the accepted criteria for capacity/competence, ^d with terms such as ‘appreciate’, ‘weigh’, and ‘communicate’; the challenge of some ambiguity also holds true for the aforementioned standard for consent outlined by the CMPA. At a very basic level, though, parents should be willing to participate in discussion about treatment options in good faith with the medical team (including the physician offering a second opinion), understand their child’s disease process and anticipated clinical trajectory, know why each treatment option is being suggested, and recognize the expected consequences of not availing of treatment (all in at least basic terms). We note here, as well, that parents must not intend their child’s death (though they can accept it as a foreseeable but unintended consequence of a decision). ^e Parents that do not meet these conditions could be regarded as malevolent (conditions 1 and 3) or grossly incompetent (condition 2). In Solution 1, the determination to grant decision-making powers to parents is exclusively based on the parents’ appreciation of the medical evidence, awareness of their child’s clinical condition, and their attitude towards the child.

It is dubious whether the state or clinicians can as effectively ‘focus on the child by considering the broadest view of best interests, accounting for that child’s unique clinical, familial, and cultural circumstances’ ²⁰ as competently as attentive parents can. ^{2 f} Moreover, with a history of harmful interventions for the supposed benefit of children, ²¹ the state’s judgement should not be assumed to be benign or necessarily be embraced as superior to prima facie caring parents – the state certainly cannot love a child. ⁵

Two examples demonstrate the consequences of our proposal. First, if a parent – believing that vaccines cause autism – refuses to vaccinate their child, the state could require the child to be vaccinated. The parent failed here to engage with relevant evidence (condition 2) and the state is acting no different than when protecting the child from the actions of an incompetent physician or protecting a consumer from the actions of a company that fails to meet the relevant standard of practice. However, if a JW child needs a transfusion and the parents understand and appreciate the medical situation, it is their prerogative to judge and act towards the child’s best interests (which may include cultural, religious and moral considerations), even if this means refusal of consent. Indeed, the father in the aforementioned UK case seemed to meet our criteria. In an emotional moment ‘he told the judge that he wanted his daughter to live but could not agree to a transfusion.’ ^{14 g} In other words, he intended his daughter’s health and loved her, but did not think that the moral cost of a transfusion was worth paying, even if a transfusion was likely lifesaving.

One could object that this proposal aims to create a religious exemption, like those found in some American states. ²² But our criteria are not based on parental faith, nor are they aimed at creating a privileged religious status. The three conditions could equally be satisfied by non-religious parents, e.g. vegan parents refusing non-vegan medical products ²³ in the care of their children. While parents could not object to vaccination based on false or fraudulent claims about vaccines (e.g. that vaccines cause autism), vegan parents could object to their children being vaccinated with vaccines produced in a manner that they judge to be unethical (e.g. by manipulating fertilised hen eggs). The parents in this example appreciate the medical evidence for and importance of vaccines (and consequences of not receiving one), with their objection reflecting their moral opposition to how some vaccines are produced. ^h In other words, they do not view the health benefits of some vaccines to be worth their moral cost.

One might object that parents who refuse a life-saving blood transfusion for their child are – by definition – prima facie uncaring and do not intend the child’s health. Yet, the previously cited example from the UK clearly shows that this is not the case. Parents who are willing to accept clinically less effective treatments, which are not morally problematic for them, clearly show that they do care and do intend health. They are willing (and often anxious) to take steps to improve their child’s wellbeing. In the UK, hospitals will often have a JW liaison officer who will explore alternative products to blood transfusion with the parents. While JWs vary in their acceptance of some of these products, a willingness to engage with the liaison officer and the acceptance of some alternative to blood transfusion ostensibly demonstrates a caring attitude from the parents. Similarly, the vegan parents in our vaccination example might seek alternative vaccines that they judge to have been developed in a morally acceptable manner. One could even argue that it is commendable for parents to look at the wider ethical implications of their decisions, rather than merely attend to the basic physical health of their child and disregard the wider societal harms that might result as consequences of their decision.

Solution 2

If Solution 1 is rejected, an important matter of integrity is left unresolved. Presently, our method of obtaining consent for children is incoherent. We ask for consent but for ‘medically beneficial treatment’ only accept ‘yes’ as an answer, even from informed and competent parents. In less emergent matters such as vaccines, we permit caring but often grossly – and sometimes wilfully – uninformed parents to reject treatment. If physicians and the courts are not willing to request genuine consent from parents (i.e. be willing to accept that an informed and responsible parent might say ‘no’), then parents should not be approached for consent. It is a farce to ask parents to consent if they cannot meaningfully say ‘no’. ⁵

In Solution 2 parents do not have a meaningful right to consent or refuse consent. Their opinion only becomes a part of the child’s social history, which the physician/state uses to help determine the best course of action, and the decision to consent would rest entirely with the physician/state. Moreover, if it is made explicit that the parents are only asked for an opinion, rather than for consent, this might reduce instances of parent-clinician conflict in instances in which the clinical team pursues a different course than that favoured by the parents. Framing it as a consent process only creates unnecessary expectations.

This manner of approaching paediatric treatment decisions would, of course, not just apply to JW families, nor would it only apply to cases of blood transfusion refusal. This same reasoning would apply to any treatment, regardless of the demographic factors of the patient’s family and their probability of saying ‘yes’ to treatment. Thus, rather than there being parental decisions in medicine, there would only be consideration of parental opinions.

While Solution 2 is more philosophically consistent than the current graduated right to consent, which depends on the severity and acuity of a child’s condition and the willingness of parents to say ‘yes’ to critical treatment, we think that this approach places a questionable degree of power in the hands of clinicians and the state. Moreover, it substantively changes the nature of the patient-physician relationship, as the physician would ultimately direct their recommendations towards the state instead of a person – the child’s parents. In other words, there would no longer be a relational aspect to consent decisions. This seems reminiscent of previous eras of clinical paternalism and would generally constitute an unnecessary intrusion of the state into family life.

Discussion

The state and physicians have an obligation to protect children from malevolent or grossly incompetent parents and should have the power to take responsibility for a child’s medical care in such circumstances. However, to request consent from medically competent and loving parents and only accept a ‘yes’ is a troubling situation – it is disingenuous and untenable, even if well-intentioned. It would be more honest if parents were not asked to consent at all. However, the implications of such a policy would be substantial and far-reaching. In essence, parents would be relegated to only making medical decisions when the treatment team viewed refusal of consent as being inconsequential – a model with a very narrow zone of parental discretion. This situation seems patronizing and unlikely to foster trusting relationships between families and physicians. This is especially true among some minority communities who have at times unfortunately experienced the worst forms of state and physician misdeeds and paternalism (e.g. the African-American community in the US or the Aboriginal community in Canada).^24,25

One might even wonder if parents would bring their sick children in promptly for assessment and care, if they knew that they had virtually no say in what happened once their child arrived in a medical facility. A hesitancy to seek medical help would undoubtedly affect the health of children, the very reason for excluding parental consent in the first place. The price of removing parents from the consent process would possibly be a loss of trust in medical professionals – even if done with the intent of helping children receive care. Impaired credibility in the medical community could have unanticipated and far-reaching consequences for the health of children.

However, there is another solution: parents may consent for a minor if they are prima facie caring towards the child, intend their health, and understand the intervention’s benefits, harms, and alternatives. ⁱ Such a policy would likely result in some children receiving what amounts to palliative care for conditions with potentially life-saving treatment options. This possibility of death is grim and hard to countenance, not only for the parents but also for the healthcare team who may watch a child die, knowing that it was medically possible to save their life. However, cases where parents outright refuse to consent to any treatment would likely be rare. And it is not clear that worse outcomes would result from this solution as opposed to the previous one, where a general loss of credibility in the medical profession could occur.

Finally, it is important to consider that significant moral distress will be almost impossible to avoid in the scenarios discussed above, regardless of which solution is implemented (or indeed if the status quo is maintained). If Solution 1 is taken up, the burden of distress may fall greatest on the clinical team, which will care for a possibly dying child knowing that they are constrained by the parents’ refusal from providing standard, life-saving treatment (parents in Solution 1 may experience grief and angst as well, knowing that they declined vital treatment, albeit on what they view as sound moral reasoning). If Solution 2 is adopted, the treatment team – although satisfied that a child will receive crucial treatment – may feel disconcerted when they override the choices of caring parents. Simultaneously, the parents may feel disregarded and troubled that their child is entangled in something they view as immoral (although they might also experience a conflicted sense of relief knowing that their child will receive optimal treatment ^j ).

Moral distress should thus be anticipated, addressed, and possibly mitigated from the outset. To this end, the medical team should try to avoid unnecessary conflict, build rapport, and establish trust in order to minimise conflict (e.g. through utilising JW liaison officers or chaplains). ²⁶ While studies have reported that staff experience greater moral distress when patients are overtreated rather than undertreated,^27,28 being externally constrained from providing clinically indicated and routine lifesaving care might cause particular difficulty. To minimise the effect of staff distress, hospitals would do well to follow recommendations from the Guidelines for the Provision of Intensive Care Services, ensuring that a qualified psychologists are available to aid staff, patients, and their families. ²⁹ Other possible supports include structured debriefing sessions and the involvement of clinical ethics teams. ^{27 k} Thus, while we argue that caring, competent parents should be allowed to consent to or decline an intervention, we recognize the implications that this may have on care teams and the need to provide them with adequate supports.

Conclusion

It seems to us uncontroversial that people might hold some goods to be superior to health. Consequently, it should not be surprising that treatments are at times refused by parents when health is in conflict with these superior goods. The challenge is that their children may not (if given the chance) similarly come to view these goods as superior to health. As such, clinicians and the state have worked under the presumption that the health of the child should take priority over other considerations. However, it is important to recognise that this line of reasoning is not value neutral but a philosophical position of its own that may risk reducing healthcare decisions to medical utility.

The present attempt to simultaneously permit parents to refuse consent and the state to safeguard the life of the child with the power to veto a parental decision is incoherent. Parents cannot meaningfully consent if they cannot refuse. A solution is needed if the medical profession is to preserve integrity. We have proposed two solutions, favouring one where genuine consent is sought from parents. Regardless of which option is chosen, though, we think that physicians, society, and the courts should be wary of overriding and disregarding the decisions of caring parents, who love and intend the flourishing of their children more than a government – or even the best physician – ever could.