Non-disclosure requests by parents: Who should decide? A legal and ethical framework

Introduction

Non-disclosure requests by parents present a challenging ethical dilemma in clinical practice. Most especially in cases where the child lacks the competency to decide for themselves or is unable to make a meaningful contribution to the decision-making process. This article will be concerned with the non-Gillick competent child, that is, a child deemed unable to demonstrate ‘sufficient understanding and intelligence’ ¹ of the relevant issues to be considered capable of making up their own mind. ²

Parental requests can range from asking the physician not to disclose the true extent of a child’s medical condition, to not disclosing their prognosis. The challenge arises when doctors and parents disagree as to whether disclosure is best for the child. Whose view is to be accorded greater weight?

Unlike in treatment disputes where the pros and cons of proposed medical treatments can be measured and anticipated using data and medical expertise, deciding whether to disclose information to a child is dependent on vague and unmeasurable factors such as the child’s reaction to previous information, their family support network and resilience. Consequently, it cannot be said with any certainty that it is in a child’s best interests to be informed.

This dilemma has generated clinical and ethical commentary including qualitative research investigating the positive and negative impact of non-disclosure on the child. ³ This article seeks to contribute to this commentary by developing a legal and ethical framework as a method for resolving these disputes. Such a perspective is important as little consideration has been accorded this debate in legal literature. Although in the main, disputes are resolved outside of court, it is important to analyse what the legal position may be if a non-disclosure case were to reach court. This is particularly important in the context of increasing clinical and academic commentary on this dilemma, ⁴ and the wider legal context where parents are advocating for greater authority in all areas of decision-making relating to their child’s healthcare. ⁵ Considering this context, and the research studies suggesting that non-disclosure can in extreme cases be seriously detrimental to a child’s health, ⁶ this article proposes that it is not unreasonable to assume that a case may appear in court in the near future.

This article seeks to achieve two goals. First, to critically analyse the current law to establish what the law may be if a non-disclosure case were to appear in court. Second, to argue that parental expertise should be the default position in cases when a parent’s non-disclosure request is clearly within a child’s best interests or if the request falls into a ‘Gray Zone’, where it is unclear whether it is in a child’s best interests to be informed.

This article will refer to parents as the person(s) with legal responsibility for a child and assume that the parents make collective decisions. The law is clear that when parents disagree as to their child’s best interests, those in agreement with the clinicians will be respected, such as in vaccination disputes. ⁷

The dilemma

There has been a considerable amount of academic commentary documenting examples of non-disclosure requests by parents in clinical practice. Aged between 9 and 15 years, these children had cancer, ⁸ neurodegenerative conditions, renal failure, tumours, ⁹ urological conditions, ¹⁰ HIV ¹¹ and terminal prognoses. ¹² Their paediatricians have expressed concern that secrecy and concealment are difficult in a context where children require regular medical intervention, ¹³ and that children who have begun asking lots of questions may become suspicious and uncertain of who they can trust. ¹⁴ Many of the doctors felt that where a non-Gillick competent child is mature enough to understand their illness and has started to ask questions, they deserved to be informed. ¹⁵ Research has found that there is ‘no evidence’ ¹⁶ that ‘involving children in sensitive and timely discussions creates significant problems’. ¹⁷ Instead, clinicians argue that to do so avoids ‘confusion, frustration, distress and anger’. ¹⁸ Moreover, while children are initially upset when informed about their diagnosis and prognosis, most are relieved and appear to appreciate this information. ¹⁹ Further documented benefits include feeling supported and being better able to cope with treatment. ²⁰ In a study by Kreicbergs et al., 27% of parents regretted not speaking to their child about their terminal condition believing that in retrospect, this would have benefited their child. ²¹ Moreover, a review of 15 articles about the impact of informing a child about their HIV diagnosis found five benefits, ‘physical/physiological outcomes; adherence to antiretroviral therapy; psychosocial outcomes; sexual and reproductive health, including HIV prevention outcomes; and disclosure of status by the children’. ²²

Nevertheless, non-disclosure requests by parents come from a place of good intent. Parents are seeking to protect their child from fear, anxiety and a loss of hope. ²³ Parents whose children had HIV also wished to protect their child from the potential stigma that remains associated with the condition. ²⁴ Some parents sought to protect their child from the knowledge that they have the same condition as their parent(s), and therefore may suffer the same symptoms. ²⁵ Others seek to protect their children from the knowledge that they have a terminal prognosis and instead focus on making their children’s remaining time as enjoyable as possible. ²⁶ Many non-disclosure requests are made after parents witness their child’s distress as a result of their medical treatment including, being unable to sleep, not wanting to attend school and preferring the comfort of being around their parents. ²⁷

In the clinical cases described by Waz, Cole and Kodish, the parents expressed genuine and realistic concern that their child would suffer severe anxiety, carry an unnecessary burden, have difficulty in understanding their circumstances and fail to enjoy the final stages of their life if informed of their terminal diagnosis or severe medical condition. ²⁸ Many parents placed importance on the benefits attached to ignorance. ²⁹

Aldridge et al. stated that no significant problems from non-disclosure were documented in their research ³⁰ ; however, there was no mention of any less significant problems that could cause parental concern. Additionally, stating that most children benefited from being informed directly implies that a minority do not. It is not always clear in advance which child will fall into the minority group who do not benefit from disclosure. Finally, while 27% of parents who had not informed their child regretted doing so, ³¹ the remaining majority (73%) did not. Moreover, some research studies have found negative outcomes to disclosure such as ‘increased psychiatric hospitalization’. ³²

Unlike in treatment disputes where the pros and cons of proposed medical treatments can be carefully balanced and supported with data, whether to inform a child of their diagnosis, prognosis or treatment plans depend on more vague factors such as the child’s maturity, family support, comprehension and past experiences. Therefore, it becomes increasingly difficult to state with any certainty that it is best for a child to be informed. Due to this uncertainty, research has found that clinicians feel unable to challenge parents even in instances where they believe non-disclosure is against a child’s best interests. ³³ Research suggests this is because clinicians must ‘grapple with reconciling their obligations’ ³⁴ to respect the child’s emerging autonomy, their right to know and well-being, with the importance of acknowledging parental authority. ³⁵ Empirical evidence argues that this results in medical professionals reluctantly adhering to parental opinion. ³⁶ Written by clinicians, much of the academic commentary on this topic seeks advice from the wider academic community as to what they ought to do in situations where parents and doctors cannot agree if it is in the child’s best interests to be informed. ³⁷

The law

Where a child lacks the capacity to decide for themselves, surrogate decision makers are under a duty to act in accordance with the child’s best interests. ³⁸ The Children Act 1989 states that the child’s welfare is the paramount consideration and that all decisions made about children and young people must be made in their best interests. ³⁹ This is supported by GMC guidelines which state that doctors are under a duty to act in the best interests of their patients. ⁴⁰ Therefore, where there is a concern about a child’s best interests and a resolution between parents and doctors cannot be made outside of court, either party may request a judicial opinion. The role of the judge is to establish what is in the child’s best interests.

It is well established that the term best interests encompasses ‘medical, emotional and all other welfare issues’ ⁴¹ in the widest possible sense. ⁴² Where parents and doctors seek judicial opinion, the judge must weigh all relevant factors and strike a balance between potential benefits and harm to conclude what is in the child’s best interests. ⁴³ This requires an analysis of the individual facts of each case. Although not an exhaustive list, importance can be attributed to the ascertainable wishes and feelings of the child concerned; their physical, emotional and educational needs; the likely effect on the child of any change in circumstances; the child’s age, sex, background and characteristics; harm or risk of harm; and the capacity of the parents. ⁴⁴ Parental opinion should be considered; however, parents have a duty to act in their child’s best interests without regard to their own interests. ⁴⁵

This article suggests that there are three types of parental decisions.

Decisions clearly in the child’s best interests.

English courts are yet to hear a case where clinicians and parents disagree as to whether it is in the child’s best interests to be informed. The majority of these disputes are resolved outside of court. Due to the lack of precedent, this article relies on treatment disputes as an example of how the law may respond to each type of parental decision in the context of non-disclosure requests. While, not binding precedent, the case law of treatment disputes is suggestive of what the outcome of a disclosure case may be if one were to appear in front of a judge. Treatment disputes were chosen as they are similar to non-disclosure cases, involving disputes between parents and doctors as to the child’s best interests in a medical context. Referring to treatment disputes, this article will now consider each type of parental decision in turn.

Why the law of treatment disputes should not be applied to non-disclosure cases

This article will argue that the law of treatment disputes should not be applied to disclosure cases in type three Gray Zone decisions, where it is unclear if a parent’s non-disclosure request is within the child’s best interests. This is because there is a significant difference between these types of disputes.

Firstly, the consequences of refusing therapeutic medical treatment for children can include serious injury and death. While Re JA illustrated that a lack of information can lead to actions which cause serious injury or death, such as a failure to take medication, ⁷⁵ this level of harm is rare in non-disclosure cases. ⁷⁶

Moreover, treatment disputes and non-disclosure cases require different types of expertise. Case law illustrates that treatment disputes involve an in-depth comparative analysis between a variety of treatment options. The judgments are primarily concerned with the measurable pros and cons of medical treatment. While parental knowledge is an important consideration, medical expertise is heavily relied upon to determine what treatment is best for the child.

In contrast, when deciding if a child should be informed, the expertise required goes beyond measurable medical knowledge and into the realm of the child’s emotional resilience, background and previous experience.

This is because the decision to inform impacts the child’s well-being. On one hand, non-disclosure can cause children to feel betrayed and uncertain of who they can confide in. ⁷⁷ Research shows that young people pick up on their parents worry and concern, suspecting that they are not well. ⁷⁸ Instead of confiding in their parents, they keep their feelings to themselves. Alternatively, disclosure can cause high levels of distress, difficulty sleeping and interacting with others, all of which significantly impacts their enjoyment and quality of life. ⁷⁹ As such, an assessment of whether it is in the child’s best interests to be informed requires a consideration of unmeasurable and vague factors such as the child’s behaviour at home, the levels of distress they currently experience, their maturity, developmental level and the support network around them. As a result, it becomes increasingly challenging to balance the pros and cons of disclosure as this cannot be done using mathematics or medical statistics.

Due to a lack of clarity, parent’s non-disclosure requests are likely to fall into the Gray Zone. As previously established, parents’ and clinicians’ advice are equally valid in the Gray Zone. This is described by Waz as ‘good intent vs. good intent’. ⁸⁰ In Gray Zone cases, research suggests that in determining which school of thought to follow when both options are equally valid, clinicians do trust that parents have the knowledge to decide if it is appropriate to inform their child. Arguing against physician paternalism in non-disclosure disputes, Cole and Kodish conclude that parents should be the decision makers unless the child asks a direct question to a medical professional. ⁸¹ In this instance, it would be unethical for that professional to withhold information. ⁸² In Waz’s case study, the healthcare team sought an opinion from an ethics committee who agreed that parental decisions should be respected unless the patient asks a direct question. ⁸³ These decisions sought to respect parental authority. Despite the respect of parent decisions, in light of the case law for treatment disputes, it is a risk that a judge will elide treatment disputes and non-disclosure requests, ignoring parent’s knowledge in the latter as they do in the former.

While the academic and clinical analysis illustrates discomfort with physician paternalism, ⁸⁴ parental authority should not be the determinate factor for according weight to parental opinion. As Eekelaar explains, ‘even if the court agreed that the parent’s view was in the child’s best interests, it could not enforce it qua parental right, because there is none’. ⁸⁵ Parental rights are now a ‘dwindling right’. ⁸⁶ Fortin argues, the Children Act 1989 and United Nations Convention for the Rights of the Child provides a ‘rights-based framework’ ⁸⁷ which ‘reminds parents and medical practitioners alike that child patients have an independent status of their own’. ⁸⁸ Fortin concludes that there is now a greater and much-welcomed emphasis on the child as an individual, distinct and separate from their parents. ⁸⁹

Perhaps the law is more comfortable defining what is best for a child by referencing a supporting body of medical opinion because they are regulated, with expertise, experience and credibility. To an extent, this restriction of parental authority in accordance with physician paternalism is justified. According weight to parental authority draws attention away from the child, potentially eroding the rights of the child. To follow parental decisions merely because they have parental authority is a step backwards. Moreover, this would be similar to the introduction of the ‘Zone of Parental Discretion’ ⁹⁰ which authorizes parental decisions even if it is ‘sub-optimal’ ⁹¹ or not the best for the child ⁹² because parents have authority deserving of respect.

Nevertheless, to give no weight to parental knowledge appears to give too much credence to the notion that all parents place their interests above their child’s. Such an argument is contrary to judicial analysis of parents in case law which suggests that the majority of parents put their child’s best interests above their own. ⁹³ Therefore, this article argues that parental decisions should be given weight not because they are authoritative but because parents have valuable expertise that is necessary in determining whether a child should be informed.

Recognition of parental expertise

The term expert is used to describe a person who has a profound knowledge and skill in a particular area. ⁹⁴ It derives from the Latin term expertus, to mean experience. Therefore, parental expertise is the intimate knowledge of their child acquired through experience.

Parental expertise is to be distinguished from parental opinion which refers to the ‘view or judgement formed about something, not necessarily based on fact or knowledge’. ⁹⁵ Unlike parental opinion, parental expertise does not involve personal judgments. Rather, parents develop an understanding and in-depth knowledge of what is in their child’s best interests from a collection of facts ascertained from the past experiences of making decisions for their child.

In addition, much of this knowledge and understanding originates from the intimate connection that exists between parent and child. This intimate connection creates a special bond which in part gives parents their expertise. This special bond is formed during the many hour’s parents spend caring for their child. ⁹⁶

In NHS Trust v. MB, ⁹⁷ Holman J emphasized the importance of parental–child relationships. Holman J argued that the ‘great deal of time’ ⁹⁸ parents spend with their child means that their views ‘may have particular value because they know the patient and how he reacts so well’. ⁹⁹ Holman J acknowledges that this expertise must be distinguished from parental emotion, sentiment, the desire to have tried everything, their views and opinions.

It is the child’s parents who provide comfort and support through severe and aggressive treatments. In most cases, parents are the people who a child can confide in, express their emotions, feelings and worries with, and who fight on behalf of their child for the best medical care. In other words, parents experience their child’s suffering alongside them.

While healthcare professionals have clinical expertise and are a body of regulated medical opinion, such factors do not necessarily make them best placed to determine whether it is in a child’s best interests to be informed.

Moreover, and unlike clinicians, the parents are present for all their child’s medical care. Whereas a clinician specializes in one area of medicine treating the child for one symptom of their condition, due to their special bond, parents are present at all their child’s clinical appointments, surgeries, procedures, scans, and treatments. Throughout this process, they build up medical knowledge specific to their child. They are often relied upon to update clinicians about their child’s treatment, changes to medication and general progress. Consequently, parents witness their child’s ability to cope with their diagnosis and medical treatment. Parents are in the unique position where they may be more aware of their child’s medical condition and how it impacts their child’s life than the clinicians treating their child.

Moreover, they perceive their child in a holistic manner. As Jane Fortin argues, doctors and parents ‘fundamentally differ’ ¹⁰⁰ in the factors that influence their decision-making. ‘A doctor is influenced by medical factors, whilst the parent takes into account not only the medical advice but also the child’s psychological needs, bearing in mind the views and mores of the whole family’. ¹⁰¹ Parents with a special bond are aware of their child’s wishes, ambitions, concerns and worries. In their life outside of the hospital, parents and children go through challenging family circumstances together strengthening their bond and thus, expertise. For example, bereavement, divorce and ill health. Every day parents are making decisions for their children as to what is in their child’s best interests. Using this past catalogue of experiences, they can distinguish between a child who will suffer short-term distress because of disclosure yet long-term benefits, and a child that will suffer long-term distress. Parents can draw upon this knowledge and experience to determine if it is in their child’s best interests to be informed.

In contrast, clinicians are unable to drawn upon this past catalogue of experiences about the child. While they may have treated many other children, each child has their own personalities, characteristics, past experiences and family that makes each decision unique. However, parents can apply their past experiences with their child to another decision. They can draw on examples that clinicians cannot.

Where this close bond exists, such a relationship can leave the parent in a position of greater knowledge as to the child’s feelings, ambitions, beliefs, values, possible reactions and concerns than healthcare professionals who spend significantly less time with the child. It is this special bond which contributes to a parent’s expertise and which eventually informs parental decisions that reflect the child’s best interests.

When seeking to understand whether it is in a non-Gillick competent child’s best interests to be informed, it is necessary to have a holistic view of the child, an understanding of the child’s concerns, feelings and opinions, knowledge of how the child previously reacted to a similar situation, their personality, family and social context and values. Therefore, the most relevant expertise in answering this question are the people with a special bond with the child, most often the parents.

How to respect parental expertise every time in Gray Zone cases

This article argues that parents should be the default decision makers when:

the child’s best interests are unclear (in the Gray Zone) and cannot be resolved through the meaningful contribution of the child (either because the child is unable to make such contribution or because the contribution is unable to resolve the dilemma);

A default position is not a new concept for medical law. Similar positions have been adopted in medical maleficence. ¹⁰²

Nevertheless, this default position requires great trust that parent decisions derive from parental expertise. Fortin argues that parents may find it ‘impossible to be objective over the decisions to be made’. ¹⁰³ Therefore, is it possible to clearly distinguish between parental expertise and parental opinion as naturally, there is likely to be significant overlap? If the parents are obviously acting with regards to their own self-interests, in accordance with their opinions and values, or as a result of emotion or sentiment this is against the Children Act 1989 ¹⁰⁴ and should be discouraged. However, in many instances, it is not possible to distinguish between motivations that are child centred and those which promote the parents’ interests, values, emotions or sentiments. While motivations can be presumed in cases where the outcome of the decision is clearly in or against a child’s best interests, such motivations may be unclear in cases where the child best interests are uncertain. However, this risk is averted by the application of the default position only in Gray Zone cases because there are two equally competent schools of thought deserving of respect. For the parents’ decision to be a case of ‘good intent vs. good intent’, ¹⁰⁵ the decision must be compelling and as close to satisfying the child’s best interests as the clinicians’ decisions. As such, where the parental decision is in the Gray Zone, it ought to be assumed that the parent’s motivation is in their child’s best interests and that they are exercising parental expertise not solely their opinion.

Moreover, as parents’ and doctors’ opinions are equally valid in the Gray Zone, this default position to parental expertise provides a clear justification for deciding in favour of the parents’ decision. This avoids unnecessary conflict between doctors’ and parents’ which exists in the current law where parental views are overridden without a clear justification in terms of the child’s best interest.

A further benefit to relying on parental expertise is the avoidance of a breakdown in relationship between the doctor and parents and the inevitable upheaval of a court process. In the case of JA, ¹⁰⁶ J was placed into temporary foster care and was only allowed to see his family on planned and supervised visits. Such intervention was unusual for this family. Justice Baker stated that ‘save for the single issue which lies at the heart of this case, this family would never have come to the attention of social services, let alone be the subject of court proceedings’. ¹⁰⁷ The judge reported that the impact of this case had significantly affected the relationships between J, his parents and the clinicians. Although in some instances such as Re JA a court process is necessary, this case is indicative of the upheaval in the lives of the individuals particularly the child. Therefore, a legal default position is beneficial as it is easily applied in medical practice. This avoids court appearances and in-depth trials. ¹⁰⁸

Finally, this rule only applies to a child who lacks the competency to decide for themselves or are unable to make a meaningful contribution to the decision-making process. A Gillick competent child begins to go through medical procedures on their own, becoming independent and distinct from their parents. ¹⁰⁹ As such, parental expertise is weakened and should not be the default position to a decision about their Gillick competent child’s best interests.

Conclusion

It is a challenging ethical dilemma when parents and doctors disagree on whether it is best for a child to be informed; whose view ought to be afforded greater weight? Academic commentary and qualitative research have investigated the impact of disclosure and non-disclosure on the child and their families. However, very little consideration has been accorded this dilemma in legal literature.

As such, this article sought to analyse the current law of treatment disputes between parents and clinicians to establish what the legal outcome may be for a non-disclosure request case if it appeared in court. As there has been no non-disclosure cases in English Law, this article referred to treatment disputes. Similarly, to non-disclosure requests, treatment disputes involve a conflict between parents and clinicians in a medical setting and as such, these judgments are suggestive of how much weight may be accorded parents decisions by a judge in a non-disclosure request case. This article found that parental authority is likely to be respected in type one decisions, but the physician’s authority is likely to favoured in the majority of type two and three decisions.

Drawing a distinction between the dilemmas involving treatment disputes and non-disclosure requests, this article argued that the latter is of a different nature and therefore, requires a different type of expertise. This article proposes that parental expertise should be accorded respect when a parent’s non-disclosure request is clearly within a child’s best interests or if the request falls into a ‘Gray Zone’, where it is unclear whether it is in a child’s best interests to be informed.