Telling the truth to seriously ill children: Considering children's interests when parents veto telling the truth

ORIGINAL ARTICLE Telling the truth to seriously ill children: Considering children's interests when parents veto telling the truth

Abstract

How should clinicians respond when parents will not allow their child to know the truth about their medical condition and treatment? There is wide consensus amongst clinicians and ethicists that children should be given "honest" information delivered in a developmentally appropriate manner. However, the basis in ethical theory is not clear, especially for pre-adolescents. These children are old enough to understand some information, but are not yet "mature minors" capable of making their own health care decisions. We take the position that thinking in terms of a child's "right to know" is not the most helpful in dealing with the ethical complexity of these situations. We propose that questions of truth-telling are best addressed in terms of how a child's interests are promoted or set back by being told the truth. Our first step is to give an account of the concept of children's interests in general. Then we relate that account specifically to truth-telling. In doing so, we use a relatively straightforward hypothetical but realistic case, in order to illustrate how ethical deliberation using interests would proceed. The case is not intended to be particularly contentious or difficult, so that the focus is on the nature of the ethical reasoning, rather than any complexities of the case.

One INTRODUCTION

Laura is a seven-year-old girl with bone cancer in her leg. Curative treatment for her cancer requires amputation of her leg. Laura is relatively well, and has been discharged from hospital, with surgery scheduled in two weeks' time. Laura has coped well with the investigations and treatment she has had so far, and she has strong relationships with her parents and family. Laura's parents are relieved that she is so settled, and decide that they do not want her to be told about amputation until the day of the procedure. This is contrary to the usual practice of the clinical team, who are taken aback by the parents' firm instruction to them not to speak with Laura about the amputation.

"Truth-telling" or disclosure of information to children and adolescents with serious childhood illnesses is an issue that has gained increasing attention over recent decades. The current widely held position is that children should be presented with "honest" information delivered in a "developmentally appropriate" manner.

Whilst we accept this general position, we propose that its ethical foundations need greater scrutiny. Over the past several decades, the consensus view about "truth-telling" to children and adolescents with serious childhood illnesses has moved through significantly different phases. In the nineteen fifties, recommendations favored a protective approach to shield children (and indeed adults) from the harmful effects of being given "bad news." This view then shifted towards a more open approach to disclosure, and then further, in the nineteen eighties towards an "always tell" approach. The latter shift reflects the influence of the United Nations Convention on the Rights of the Child, where truth-telling and open discussion are seen as an important part of protecting a child's rights.

The question of what constitutes "the truth" about a serious medical condition in a child is of course somewhat problematic, when treatment and prognostic information is probabilistic, uncertainty abounds, and there is the possibility of new treatment breakthroughs. Nevertheless, even if we cannot ever "fully grasp or express the whole picture," it is possible to "speak truthfully." This is the sense in which we use the term "truth-telling." We agree with Higgs that one can distinguish between the abstract concept of "truth," which may be impossible to establish and "telling the truth" or speaking "truthfully", where the intention is "to convey what we understand" and not to mislead. Speaking truthfully can include uncertainty, "likelihoods," "informed guesses" (if they are acknowledged to be guesses) and saying "I do not know." Truth-telling is disclosing openly and honestly what one knows or understands, with whatever degree of uncertainty and interpretation is attached to that.

In this paper, we revisit the question of telling the truth to children through the lens of a case such as the one above, where parents request or demand that their child not be told the truth. We put forward the position that thinking in terms of a child's "right to know" is not the most helpful in dealing with the ethical complexity of these situations. We propose that questions of truth-telling are best addressed in terms of how a child's interests are promoted or set back by being told the truth. The case is intended to be relatively straightforward, rather than particularly contentious or difficult. It has been chosen in order to allow us to focus on the nature of the ethical reasoning, rather than on what the ethically appropriate outcome should be. This case, and others like it, highlight the need to be able to give ethical reasons for telling the truth to a particular child in particular circumstances, and also to contemplate possible ethical reasons not to tell. When parents make such a request, they are surely owed at least proper consideration for their preferences. They should be asked their reasons; these reasons should be fully considered, and if the clinicians or clinical ethics team decides to act against their wishes, then parents should be given a full explanation that addresses their reasons. They are owed this even if in the end the ethical decision that the child should be told is relatively clear-cut. As suggested by our case, our focus is on younger children: children who are old enough to understand some information, but are not yet "mature minors" capable of sufficient understanding to make their own health care decisions. These children may be capable of having input into decision-making in various ways (such as expressing concerns, asking questions, saying what matters to them), but do not have the cognitive capacities and psychological maturity to make a fully autonomous decision of their own, which would constitute a valid informed consent to or refusal of medical treatment. This age group is of special interest, because a primary reason driving truth-telling for competent adults (that they need the truth in order to make an informed decision), does not apply.

Whilst the wide consensus about giving children "honest" information in a developmentally appropriate manner applies to these younger children (primary-school aged children, approximately five to eleven years), there has been little detailed ethical analysis to support this. A recent paper from our group surveyed the ethical and psychosocial literature to identify reasons given in favor of telling the truth to "immature minors." This paper identified six major claims about why younger children should be told the truth. Broadly speaking, these claims fall into three categories. The first two are tangible claims: firstly, that truth-telling will promote the child's well-being at the time of their illness or hospitalization; secondly, that it will lay a foundation that will help them in the future when they are older and need to be able to make their own decisions. The third category relates to intangible matters-that truth-telling respects the child as a person, or instantiates the ethically proper relationship between clinician and child. Interestingly, claims about the younger child's intrinsic "right to know" were not prominent.

In relation to younger children, there are limited empirical studies to support truth-telling as beneficial. Much of the research on children's desire for information, and the beneficial effects of being given information, has been conducted with adolescent patients, whose increasing autonomy and cognitive ability make the ethical basis for truth-telling relatively more straightforward. Less is known about younger, pre-adolescent children. Coyne et al.'s studies on information-sharing and shared decision-making (which included children as young as seven years), though not directly about truth-telling, showed that children with cancer wanted to receive information about their treatment, and trusted their parents to provide but also to "buffer" that information. Coyne et al.'s findings paint a somewhat different picture from Levetown and the Committee on Bioethics' earlier summation that studies to that point indicated pre-adolescent children were "passive recipients" of medical care, with almost no involvement in discussions about their care planning. This may suggest that there has been some degree of change quite recently, or it may simply be that the settings are different. Overall, the number of studies so far is small, meaning that it is not possible to make conclusive statements about the effects on younger children of telling them the truth.

Ultimately, then, the empirical evidence does not offer any compelling reasons for or against telling the truth to younger children. Further, the basis in ethical theory for the standard reasons for truth-telling to younger children has not been explicated in any detail. Currently, a lot of the normative work is being done by very general ideas that truth-telling is beneficial and respectful, and that the child has a right to know the truth. Applying these ideas to specific cases where parents veto truth-telling leaves a great deal open to endlessly contestable interpretation, or simply to claim and counter-claim. In particular, we suggest that thinking in terms of a child's "right to know" is not particularly helpful in these situations. In this paper, we propose another approach, which focuses on the interests of the child. The question about whether a child should be told the truth, we suggest, should be addressed by asking whether telling the truth would promote or set back the child's interests. This approach requires a nuanced understanding of what constitutes a child's interests, both in general and in particular situations, such as diagnosis of a life-threatening condition such as cancer, approaching major medical procedures with life-changing outcomes, and nearing the end-of-life. It also involves careful consideration of how being told the truth relates to these interests, for each particular child in their unique set of circumstances.