PRACTICAL CHALLENGES TO THE APPLICATION OF BEST INTERESTS IN MEDICINE

There are several practical problems that may be a concern when making medical decisions for children. These problems include that the child’s interests are indeterminate, that they are unknowable, that a best interests standard is too demanding, and that decisions should be based on family interests. I will consider these in turn.

Indeterminate

In determining a child’s medical treatment, a strong, robust, impersonal, notion of interests is needed, much more so than is required for adults. When medical treatment

is proposed for an adult, the dominant (Western) approach is to respect the adult’s autonomous choice. And when dealing with an incompetent adult, decisions are made on the basis of what the adult would have chosen had they been competent. Buchanan and Brock can write “…there are deep and complex philosophical issues about the best or correct account of individual well-being…we can make no attempt to explore fully, much less settle, those issues here…Much of our account of...the principles guiding surrogate decision making does not presuppose one particular kind of theory.” [Buchanan & Brock, 1990: 31]. And the reason that they can state this is because their account defends an account that prioritises autonomy over well-being. And even for those who are incompetent the decisions regarding their medical treatment are based on what the previously competent person would have chosen. Only rarely are they forced to fall back on an impersonal notion of best interests. Because their account of well-being relies on the autonomy of the previously competent person, they avoid the disagreement over an abstract, impersonal, conception of interests.

Only in two rare situations is an objective best interests assessments needed for an adult. The first is when the now-incompetent adult has never been competent; the second is where the adult was competent but there is insufficient evidence available to settle the decision. In most practical situations, decisions for incompetent adults are made on the basis of their prior choices. An adult may have made an advance

directive, or have appointed a guardian to choose on their behalf or there may be clear evidence of the choices that they would have made. Regardless of the different ways in which the principle is instantiated, the point is that the adult’s prior choice with regard to their treatment is respected, and so a clear objective conception of best interests is not needed. However, as children lack the ability to decide their own interests, a clear conception of interests is needed for them.

I have described the ways in which there is no meta-ethical agreement on a formal theory of well-being, nor even on an underlying approach to a theory of well-being. This may suggest that agreement at a normative level is unlikely to be achieved134. It is

134 _{Although some would see that meta-ethics is entirely distinct from normative ethics, Griffin}

wrote “We ought not, I think to treat meta-ethics as something that can be pursued for long independently of normative ethics.” [Griffin, 1986: 4] which I believe to be correct for a variety of reasons. Similarly, Daniels describes the method of reflective equilibrium as

clear that there are deep divisions, even within individual western societies, about well-being135. An example of the deep division was demonstrated by the legal dispute reaching even to the US Supreme Court over nasogastric tube feeding of Terri Schiavo (an American who developed persistent vegetative state following an out of hospital cardiac arrest). Terri’s husband sought to withdraw tube feeding but Terri’s parents thought it should continue. Their extensive legal battle is well-documented on the website of the Miami Ethics Programme [Miami Ethics Programme]. One reading is that the dispute was between those who valued biological life (as existence, as Terri’s parents did) and those who valued life with meaning for the individual who lives it (a biographical life, as her husband did). Although it is possible that her parents thought that continued treatment may eventually reawaken Terri (though she had remained neurologically devastated for 15 years), others clearly value human life highly

regardless of the conditions of the life. A clear statement of this position was made by the Pope (during, and perhaps in response to, Terri’s case) “...I feel the duty to

reaffirm strongly that the intrinsic value and personal dignity of every human being do not change, no matter what the concrete circumstances of his or her life. A man, even if seriously ill or disabled in the exercise of his highest functions, is and always will be a man, and he will never become a ‘vegetable’ or an ‘animal’. Even our brothers and sisters who find themselves in the clinical condition of a ‘vegetative state’ retain their human dignity in all its fullness. The loving gaze of God the Father continues to fall upon them, acknowledging them as his sons and daughters, especially in need of help.” [John Paul II, 2004].

Another example is found in the case of MB. The doctors and nurses caring for MB and those appointed as expert witnesses all believed that withdrawal of treatment was in MB’s best interests (“The experts all agreed that if only M’s interests were being

“…working back and forth among our considered judgements (some say our ‘intuitions’) about particular instances or cases, the principles or rules that we believe govern them, and the theoretical considerations that we believe bear on accepting these considered judgments, principles or rules, revising any of the elements wherever necessary in order to achieve an acceptable coherence among them…seeking coherence among the widest set of beliefs, and revising and refining them at all levels when challenges to some arise from others.” [Daniels 2011]. In the absence of agreement at meta-ethical level, support for widely different approaches to interests is available.

135 _{An example of the recognition of this problem from academic ethics “…in any, even}

moderately, diverse community, no single agreed concept of the best possible life is going to be possible or desirable”. [Parker, 2007: 281].

considered then this option would be in his best interests.” [An NHS Trust v MB [2006] paragraph 87]), as did the guardian ad litem appointed on MB’s behalf (“…it is the very strongly held view of the guardian that currently (even ignoring future

deterioration) the burdens outweigh the benefits” [ibid paragraph 87]), and yet the judge decided that continued treatment was in MB’s interests. The disagreement between the experts and judge can be at two levels. One level is in the weighing of evidence, so Mr Justice Holman described that his disagreement with the guardian ad litem lay in their respective assessment of the evidence writing “A number of these benefits are expressed in the guardian’s list as “possible/probable” and it may be that doubts in the guardian’s mind as to whether he in fact gains these benefits is part of the difference between us.” [ibid paragraph 101]. But if so, it is interesting that the judge decided as he did, given that the guardian had visited MB: the judge relied only on testimony and a short video which had been made by MB’s parents. The

disagreement may lie at the level of the assessment of the evidence of MB’s condition, but it may also (or instead) be that the guardian and judge have different conceptions of what is meant by interests, which led them to different decisions. And if this is true, it means that some situations will not be resolved precisely because the disagreement arises from different conceptions of interests. If it is recognised that there is not a shared meaning of interests by all who use the term, then some of the disagreements may be resolved. It may be that in other cases individuals will have different

conceptions of interests and the differences are not able to be resolvable by reasonable discussion.

I have argued already at the beginning of this chapter that different authors have different conceptions of interests, and that one reason for a dispute about interests is when this is unrecognised. When interests are used in to determine medical decisions, what the child’s interests are taken to be should be explored and, if possible, agreed. The response to the claim that interests are indeterminate is to agree that this may be true, but only in particular circumstances. In other circumstances there is sufficient agreement to make decisions based on interest assessments.. There are many cases where it is clear where a child’s interests lie, even though others may make different choices and here the child’s interests offer clear guidance. An example of this is when

Jehovah’s Witness parents refuse blood transfusion for a one year old who needs blood. This decision is clearly against the child’s interests136.

It is true that there are difficult cases in which it is not clear where a child’s interests lie137. And because these cases are difficult to resolve they attract more attention than those where resolution is straightforward. The discrepancy between the longevity of the conflict and the attention provoked by difficult cases contrasted with the more easily resolved cases exaggerates the problems with the disagreement over a child’s interests. The more difficult cases are those that deal with the end of life (the themes explored in the discussion of Terri Schiavo and MB). In making an assessment of interests towards the end of life, some people object that the two options, being alive or being dead, are incomparable138. However, we recognise that competent people can make their own choices, both to refuse life-saving treatment when they judge that the burdens of side-effects outweigh the gains of treatment139 and (in the regions where it is permitted) to deliberately end their own lives. Both of these suggest that whilst choosing between alternate courses, one of which will result in immediate death, is hard and complex, it is not impossible. Although agreement on a conception of the child’s interests in these cases may be difficult it is at least possible if reasons are

136 _{Why is this so? Jehovah’s Witnesses believe that the Bible (God’s word) prohibits blood}

and so “Accepting a blood transfusion willingly and without regret is seen as a sin” and an adult “…would no longer be viewed as one of Jehovah's Witnesses because he no longer accepted and followed a core tenet of the faith - i.e. the act of accepting a blood transfusion stopped a person being a Witness, without any further action by the Church. If the Witness later changes their mind and repents of their action they can return to the Church.” [Religions BBC] And so, partly because a one year old cannot ‘willingly and regretlessly’ accept a blood transfusion and partly because “Children who are transfused against their parents' wishes are not rejected or stigmatised in any way.” [Religion BBC], transfusion is clearly in the child’s interests (it will prolong their life and no sanctions will attach to transfusion) should they need it. Though it may also be true that the parents should refuse to agree to transfusion, because they know that the courts will order it and if parents do not voluntarily accept transfusion then no sanctions will be taken against the parents either.

137 _{But it may also be that in some situations the child’s interests are clear, but that sensitivity}

to parental emotions prevent courses of actions that would be in the child’s interests. Here we have clearly moved away from the child’s interests.

138 _{“…we cannot make the comparison of life against nonlife demanded by the best-interests}

standard without foundering on conceptual incoherence.” [Arras, 1984: 26].

139 _{Demonstrated in the medico-legal case of Ms B, who was left paralysed and ventilator-}

dependent after a central nervous system haemorhage. Her clinicians refused to withdraw ventilation (as she asked) because they believed further treatment was in her best interests. The court ordered that ventilation should be withdrawn (albeit in a different hospital) [Ms B v

given justifying what a child’s interests are taken to be and why a particular course of action is held to be in that child’s interests.

Uncertain prognosis

A second problem with the claim that decisions should be in a child’s best interests is that even if there was agreement at a normative level as to what constituted best interests, best interests are ‘unknowable’: and they are unknowable in several different ways They cannot be known because of statistical uncertainty; because there is an absence or a severe limitation of information about outcomes; because of an incomparability of different components of interests and because interest determinations are overwhelming complex.

Firstly, uncertainty is a problem for all decisions that depend on the statistical likelihood of future outcomes. A rational approach involves combining both the likelihood of an outcome and the quality of the outcome, so that the ‘best’ outcome (the highest quality) may not be sought if that outcome is prohibitively unlikely. In this case, a less good, but more likely outcome may be chosen as this approach is likelier to lead to a good (but perhaps not the best) outcome.

The problem of uncertainty is greater for children than adults for several reasons. Firstly, when decisions are made for a sixty year old the decision is based on outcomes that look 10-20 years into the future. But when outcomes are chosen for children these may be projected 50 or 60 years later. As well as this, a child’s growth and

development adds another layer of complexity to decisions about medical treatment that is absent from decisions for adults. And here, earlier correction may lead to normal growth and development, or conversely earlier intervention may produce scarring that impairs normal growth and development. As well as the development of the child, there may well be developments in therapies over time. Diseases which were untreatable, or which had treatments with unacceptable side effects 10 years ago, may now have safe and effective treatments (but also they may not. Stem cell therapies have been vaunted for a long time but have yet to come to fruition). For some conditions, therapies which had poor outcomes combined with a high risk of unacceptable side-effects, may improve through the time that the child undergoes treatment, changing from treatments that were barely, if at all, in the child’s interests to treatments that are clearly in the child’s interests.

A second problem comes when there is no, or very little, information about the

outcomes of interventions. An example of this is the introduction of the arterial switch procedure, in a particular form of congenital cardiac disease (Transposition of the Great Arteries – TGA – where the pulmonary artery and the aorta arise from the wrong ventricles). In the mid 1980s the mainstream approach to TGA was a

reasonably successful operation carried out when the child was around 10 months old (the Senning Procedure). However, following this operation, the chamber that usually pumps at low pressure to the lungs must work at higher pressure to pump blood round the body, which it can do for only so long before it starts to fail. Although the early results from the Senning Procedure were good, as children grew to teenage years, they commonly developed heart failure or heart rhythm problems, either of which was often fatal. In the late 1980s a newer approach - the arterial switch - anatomically corrected the heart so that the chambers pump as they are supposed to. The theory was that the switch would prevent the development of heart failure and dysrhythmia. However the switch procedure is a more complex operation and must be done within the first 10 days or so of life [Bull et al, 2000]. The difficulty of the operation

(especially in the early days when the team of surgeons, doctors and nurses are

learning the complexities of the procedure) meant that the complications, and probably the mortality at the time of operation, would be greater. So in the early days of the switch procedure, the choice lay between a proven operation, leading to significant problems in teenage years, or a newer operation likely to cause more complications around the time of operation (and likely a higher mortality) for probable but uncertain advantages when the child is older. The longer term advantages, are theoretical although the short term higher mortality is more reliably predicted by the more extensive operation, which needs to be performed on children of a younger age by practitioners learning a new procedure - ‘old dogs and new tricks’. The immediate disadvantages are more certain, and more immediately countable. Unless, and until, many children have had the switch procedure, whether the theoretical benefits translate into real benefits is unknown. And it is important to emphasise for all those who say that more information is needed (which is true), the information will not be available until long past the time when the decision has to be made for a particular child. Whichever decision is made for a particular child contributes to the information available for future children. The problem here is that although I have described that a

rational approach to uncertainty involves combining the chance and the quality of outcomes, both of these pieces of information are often lacking in situations where interest-based decisions based are made, and this is particularly true for children because of the longer time span over which the outcomes of medical decisions made for them must run.

A further way in which best interests are unknowable lies in the incomparability of different components of interests. Consider cytotoxic treatment regimes for childhood cancer. All chemotherapeutic agents kill normal human cells as well as cancerous ones. In doing so, the chemotherapy causes various problems amongst which the most likely is an increased susceptibility to infections. The optimal dose of chemotherapy kills all the malignant cells, but does not eradicate the child’s immunity so that the risk of death from infection is not unduly increased. A higher dose of chemotherapy that is more likely to eliminate the cancer will increase mortality because it increases the risk of infection. Here, because the outcomes are the same (mortality), an optimal level of treatment, with the lowest overall mortality can be determined. However as well as this, chemotherapy is profoundly unpleasant, children feel awful, are unable to eat or drink because they vomit so much, they feel nauseous, their hair falls out alongside many other problems, some short term, and some more persistent. Some cytotoxic regimes are just too toxic and cannot be tolerated. The difficulty in assessing interests lies in balancing an increased probability of survival against the awfulness of the treatment which persists for quite some time. The problem lies in comparing two very different components of a person’s interests.

A compelling example of the incomparability of different domains of interests are recent trials that studied the optimal amount of oxygen for prematurely born babies. It is known that the use of more oxygen contributes to an abnormal proliferation of blood vessels in the eye that, at its worst, causes blindness (retinopathy of prematurity, ROP). Following this, for some time clinicians have carefully controlled the amount of