CHAPTER 4: CHILDREN’S INTERESTS 4.1 INTRODUCTION
4.8 A PROPOSAL FOR CHILDREN’S INTERESTS Introduction
I have argued that medical decisions for children should be based on the child’s interests, but that the current approach, depending on the child’s ‘best interests’ is flawed. A better approach is that the concept of interests is taken to offer a structure in which arguments for and against a particular medical course can be made. There can be reasoned argument to reasonable agreement both about what a child’s interests are, and the effect that healthcare interventions will have on the balance of the child’s interests. Interests can be balanced one against another through reasoned argument to achieve resolution. An analogy is that the framework of interests is a table top on which bargaining chips (interests) can be placed to be balanced against one another in deciding which course produces the biggest ‘pay off’ when assessed in the currency of the child’s (and perhaps others’) interests. This is a reasonable assessment of the child’s interests.
The criticisms that I made of the child’s best interests can be used in developing an alternative approach, a reasonable assessment of the child’s interests. Firstly, because there is not a single accepted understanding of a child’s interests, and there are
multiple different uses of ‘best interests’, a part of the agreement must be to agree how the child’s interests are understood. Furthermore, with agreement about the child’s interests, it may be appropriate to acknowledge the interests of others when medical decisions are made for children. Decisions for an individual child cannot (in all
circumstances) rest on the interests of that child alone. The approach must allow that the parent’s interests in their child’s well-being can be included187.
A child’s interests are not a fact about a child that can be determined in the way that a child’s weight or blood pressure can be determined. That this is believed is suggested by those who write of a child’s Best Interests (with capital letters) which has
spuriously authoritative or authoritarian overtones, suggesting a technically correct answer. The standard approach is that “…the ‘best interest’ standard…is used as if its meaning is self-evident and uncontroversial…” [de Vries et al, 2013: 1], but this is not true. de Vries’ group interviewed parents, children and clinicians in a paediatric oncology unit finding that clinicians and parents have different conceptions of interests. As well as this their conceptions of interests changed through the course of the child’s treatment. I have argued that there are good reasons why there may be disagreement about a person’s interests. This means that reasoned argument is important in constructing or agreeing an explicit conception of interests to be used in making medical decisions for a child. There may be broad agreement about some aspects of interests, but there need not be, and importantly although a child’s interests are taken to be self-evident they should be part of reasoned agreement.
The common point of these criticisms is that they recognise that what matters are interests, they modify the best interests approach, but remain interest-based. Others mount a different criticism, that an interests-based approach is incorrect, and require
187 An example here is found in treatment towards the end of life when a family demands a
treatment that they strongly believe to be indicated, though clinicians disagree. If the treatment does not harm the child it will likely be used. There are two interest-based approaches to justify this intervention. Firstly, in recognising that parents have a legitimate interest in the well-being of their child, when decisions are made for children, the parents’ interests can be included. The parents’ interests in their child are not determinative of decisions that should be made, but are one, among other, interests that are amalgamated in determining an appropriate course. An alternative approach is required if the claim is that medical decisions should be determined solely by the best interests of a child. The approach depends on the contentious claim of the persistence of interests after a person’s death and one sense in which this may be true is the memories of the person that continue after the person’s death. Those memories can be tainted (harmed) or embellished (benefited) and so affect the dead person’s interests. The memories of the person are tainted by the family’s belief that she was ill treated at the end of her life. Her family may then be unreconcilable with their child’s death. The claim is that the parents may have been able to come to terms with their child’s death had the child been treated differently.
that decision should be made by parents by right for example188. These critics do not regard the child’s interests as amongst the important components in medical decisions. The move away from interests is wrong, as it is clear that what matters in many cases is the child’s interests. A further advantage of an interest based approach is that it offers grounds for reasoned argument and agreement.
An interests determination is best seen as a conceptual tool189. Interests are a common
currency or denominator allowing the different aspects of the child and her life to be considered one against another and amalgamated by reasoned agreement to produce an assessment of their effect on the child’s overall interests. Decisions about medical interventions can be assessed in terms of the effect that the treatments will have on interests, but there is not a specific category of medical interests. Decisions about medical treatments may take priority over other aspects of a child’s life (their schooling or whatever) but do not necessarily trump decisions which primarily concern other aspects of the child’s life. And when medical decisions do take priority it will be because the decisions involve particularly pressing, important, or
consequential interests, not because the decisions are about medical interests. As well as this, other people’s interests may be included in the interests determination: the calculation need not, nor should, be limited to the child alone.
I have argued that medical decisions for children should be based on a reasonable conception of the child’s interests. There are two parts to this. I will describe and argue for what I mean by ‘reasonable’. As well as this, there must also be some agreement of what a person’s interests are. If not it becomes all to easy, whatever process is used, to become confused about a person’s interests190.
188 For example, “To hold that adults may be Christian Scientists but that if they are parents
they may not raise their children according to Christian Scientist principles is to deny Christian Scientists the full right to the practice of their religion” [DeGeorge, 1995: 2].
189 “The concept of best interests thus serves primarily as a conceptual tool, a focusing device,
for our discussions, our thinking, and the processes by which we make decisions particularly about voiceless patients” [Bartholome, 1988: 40].
190 An example comes from de Vries who, in empirical work on children’s interests, asserts
“…it is not easily determined whether it is in the best interest of a child to be vaccinated, circumcised or treated with complementary therapies…the notion of best interests is
inherently a matter of balancing different values, and not just a matter for medical judgment.” [de Vries et al, 2013: 2]. Taking one particular example, it is easily determined that
A Substantive Conception of Interests
I have argued that there isn’t a single agreed conception of interests, and that there are good reasons why it is unlikely that there will be one in the near future. Despite this, if interests are to be used when making medical decisions for children there needs to be some clear sense of what is meant by interests.
In criticising the Baby Doe rules in America, Arras argued that when faced with difficult cases, it is easier to resolve questions regarding the decision-making process (who should decide), than it is to decide what the right thing to do is. Arras’ criticism is that we focus on the process of making decisions, to the exclusion of a “substantive standard based on the ‘best interests’ of the child” [Arras, 1984: 25]. And yet in the absence of a clear sense of what interests are, whatever process is in place will not necessarily settle on the child’s interests. In the absence of a substantive standard, decisions need not reflect the child’s interests and will be likely to be inconsistent. Concentrating on process alone will not solve the problem of how medical decisions should be made for children.
A child’s interests must be understood widely, and so interests is an appropriate term. ‘Interests’ are plural, recognising that there is more than one component to an
individual’s well-being, and so encouraging a broad review of all the factors that may be good or bad for the individual. It also recognises that there are benefits and gains to each course, and that the benefits and gains may be in different domains of a person’s life, and so these domains must be balanced one against the other. For example a treatment that is more likely to cure a child (a medical interest) may be more unpleasant, and so unpleasantness (and other emotional interests) must be balanced against a greater prospect of cure.
in a child’s interests. It reduces the likelihood of death and disease. It is not a matter of values, unless some bizarre value system prioritises a shortened, diseased, life over a longer life with less morbidity. Vaccination is a single event that will not compromise the child’s relationship with their parents. There may be particular cases where determination of the child’s interests is difficult, but this is not true in all situations. We may choose to let parents make decisions that are not in a child’s interests (for several reasons), but we should not pretend that the approach that is taken is in the child’s interests.
In focusing on the child’s interests, the decisions are centred on the child, what does matter and what will matter to the child. The child’s interests are seen through the child’s eyes. Others (children and adults) may have interests that need to be considered in so far as they are affected by the decisions that are made for the individual child, but all justifications or reasons must be traced back to that child. Any reasons that cannot be clearly traced back to the individual child’s interests may be questioned. I have already discussed the ways in which a child’s interests are intermingled with others in an intimate family. Another example of the importance of focusing on the child’s interests is found in justifications for a child’s participation in research. Traditional guidance was that research on a child was acceptable only if “…it is good practice and in the best interests of the child…” [Medical Research Council, 2004: 28]. More recently, this has been watered down so the European Directive relating to clinical drug trials requires that “…some direct benefit for the group of patients is obtained from the clinical trial…” [European Parliament, 2001: 8]. UK Law is slightly
different: “Some direct benefit for the group of patients involved in the clinical trial is to be obtained from that trial” [Statutory Instrument, 2004: Part 4 Section 10]. The UK’s text makes it clear that the ‘group’ is the group of children taking part in the trial. However, both of these standards are clearly different from the initial standard requiring that participation in the research project be in the participating child’s best interests. Benefit to a group (however characterised) is a less stringent standard for research-participation than one that depends on the individual’s interests. With the prospect of sufficiently great benefit to the group as a whole, significant harms are justified to a particular child. This is clearly wrong. My example is intended to demonstrate that although it may be reasonable to include the interests of others in deliberation, the focus should remain on the individual child’s interests.
Although interests may be categorised into groups, as others have done (Wendler lists five groups [Wendler 2010]; Holman, 2006 describes at least four groups191; as does
191 “Best interests…include, non-exhaustively, medical, emotional, sensory (pleasure, pain and
suffering) and instinctive (the human instinct to survive) considerations.” [An NHS Trust v MB [2006] paragraph 16].
Gillon192) the importance of grouping interests should not be exaggerated. Interests are not demarcated within boundaries, and there is not a clear distinction between medical interests and other interests. In the same way that health does not have a clear
definition, neither do medical interests have clear limits. The WHO defines health as “…a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” [Constitution of the World Health Organization, 1946]. Daniels responds “Health is not all there is to well-being or happiness, contrary to the famous World Health Definition (WHO) definition…The WHO definition risks turning all of social philosophy and social policy into health care.” [Daniels, 2008: 37]. These statements demonstrate that there is not a clear demarcation of ‘health’ nor ‘medical’. To take one particular example of groups of interests, Holman seeks to separate ‘emotional, sensory (pleasure, pain and suffering)’ considerations from medical interests, but the features Holman seeks to separate from medical interests are integral components of medical interests. Specialists in Psychology and Psychiatry focus on the emotional well-being of patients. Similarly specialists in Anaesthesia focus on relieving pain and suffering. Throughout medicine there are attempts to limit the ‘emotional, sensory (pleasure, pain and suffering)’ consequences of medical treatments. Medical treatments prolong (or shorten) life, improve (or impair) functioning, reduce (or cause) pain, initiate and cement (damage or break)
relationships, and can improve (or impair) mental health amongst many other effects. The interests that Holman seeks to separate from medical interests cannot be so isolated as they are integral components of medicine.
Despite these concerns, grouping interests may have a role to ensure that aspects of a person’s interests are not ignored in focusing on one particular component of interests. To this end, I discern three broad groups of interests all of which overlap: biomedical interests; experiential interests (in taking pleasure from being alive); interests in achievements and development193. These interests may be further subdivided into
192 Discussing confidentiality in genetic counseling Gillon argues that ethics should “…not
permit transgression of medical confidences in order to serve the medical interests of third parties…” [Gillon, 1988: 172].
193 One group that is often proposed is a group of interests in human relationships (see for
example Buchanan and Brock, 1990: 247). I believe that what is important in human relationships is encompassed by the other groups of interests. The experiences of being in a good (or bad) relationship, and the effects on a child’s development are ways in which the