Substitute Decision Making for Neonates and Young Children: The Problem of Developing Awareness

Substitute Decision Making for Neonates and Young Children:

The Problem of Developing Awareness
Eike-Henner W. Kluge

University of Victoria

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Eike-Henner W. Kluge PhD

Professor, Dept. of Philosophy

Associate, Centre on Aging

University of Victoria

Victoria, BC, Canada V8W 3P4

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Abstract

In the absence of advance directives or a clear indication of preferred values, substitute decision makers must be guided by considerations of what is in the best interests of the patient. A primary component of the best-interest criterion is quality of life. There are many tools for measuring quality of life; however, none take into account the fact that the concept of quality of life is logically and ethically different for patients with developing awareness as opposed to patients who have a developed perceptual framework. This note outlines why this a problem and why substitute decision-making for neonates and young children needs an entirely new set of tools to measure quality of life if the best-interest criterion is to be meaningfully applied in their case.

Introduction

“A physician shall respect a competent patient's right to accept or refuse treatment.” — so reads the International Code of Medical Ethics of the World Medical Association.[1] This immediately prompts the question, “And what about incompetent patients?” The reply, of course, is that in their case the right to accept or refuse treatment is managed by substitute decision makers. A whole literature has grown up around who may be a substitute decision maker, what standards and criteria substitute decision makers should use, the limits of their substitute decision making authority, etc. It has also become standard practice that if the patients have previously been competent, substitute decision makers must follow any previous competently-given advance directives or, in the absence of such, follow the values that shaped the patients= lives prior to the onset of their incompetence. In all other cases, the substitute must be guided by consideration of what is in the patient’s best interest.

And there=s the rub! While many tools have been developed for measuring quality of life,[2] none take into account the fact that there is a fundamental logical and ethical difference between how the notion applies to patients with developing awareness, such as neonates and young children, and patients who already have a developed awareness. What follows is an attempt to outline why this is a problem and why it leaves those who act as substitute decision makers for neonates and young children without any consistent way of incorporating quality of life considerations into their best-interests deliberations. I shall begin with a few general words about quality of life measures and how they are used.
Quality-of-life measures

Over the years, a consensus has emerged that, minimally, quality of life measures should have an objective physical and a subjective psychological component.[3,4] The objective physical component should include measures that assess the patient=s physical health and well-being, ability to function and interact physically with other persons, absence of pain or discomfort, and in general the ability to take advantage of the opportunities that society offers its members. The psychological component should includes measures that assess the patient=s cognitive and emotional status, self-perception, stress and in general the degree to which the person can achieve life satisfaction. Some quality of life measures also add a spiritual element as a separate component.[3] Moreover, many contemporary measures recognize that quality of life differs from age-group to age-group. Accordingly, they vary the number and nature of the variables that they measure and emphasize different considerations for people at different stages in their lives.[5]

At first glance, it seems as though this solves the problem of developing awareness because substitute decision makers for neonates and children no longer have to use quality-of life measures that are appropriate only for adults.[2-5] However, despite this change in approach, all current measures suffer from one serious flaw: They all treat the variables that they measure in the same way. That is to say, while they differ in complexity — which is to say in the number and types of variables that they measure — they all quantify the attributes they measure by using metrics that have static dimensions, where the different qualities that are being measured are plotted on an arithmetic scale. This assumes that the difference in quality of life between young children and adults is simply one in terms of types of qualities, and that the value-differences for different measures of a given quality are purely arithmetic in nature: that a higher relative value merely represents a higher degree of that quality and a lower value represents a lower degree of that very same quality.
Unfortunately, this assumption is seriously flawed. That is to say, such an arithmetic approach to measuring quality of life is appropriate when the experiential frameworks that are being assessed do not undergo anything other than quantitative development in terms of the number of qualities or in the sensitivity gradients relative to the experience of these qualities. In such a case, adding another modality to the metric or altering the acuteness of the relevant measures will correctly identify any differences in the qualitites that are being measured. However, it is fundamentally flawed when one is dealing with experiential frameworks that undergo a profound change in the significance of the qualities and modalities as these are experienced because it fails to acknowledge that this change in epistemic significance goes to the very meaning of quality of life.
And this is the problem with applying current quality of life measures to neonates and young children. As neonates and young children develop and mature, they undergo a fundamental change in how they experience the world, where this change is integrally tied to an epistemological expansion of their world view. To refer back to what was said a moment ago, this change is not simply one in terms of sensitivity gradients or in the number of modalities that have to be measured C although, of course, important changes do occur in this regard. It is a change in the very meaning and epistemic significance of the experiential modalities themselves.
To repeat, current quality-of-life measures neither acknowledge nor address the fact of this epistemological change. That is why they are insufficiently sensitive to be usable in the case of neonates and young children whose awareness is still developing. One cannot deal with this change in epistemological sophistication simply by increasing or decreasing the numbers or types of variables that one measures or by simply switching measuring frameworks. One has to somehow measure the change in significance or subjective meaning of the variables themselves. Without this, one is treating the awareness of neonates and young children as though it were subjectively the same kind of awareness as one finds with adults – and that is simply not the case.
Experiential frameworks and quality of life

To clarify what is at issue, it may be useful to take a closer look at the concept of quality of life itself — where this notion is understood in the sense familiar from the medical literature, namely in the sense of what has called health-related quality of life [6]

Notwithstanding the fact that standard (health-related) quality of life measures include objective as well as subjective components, quality of life is ultimately something subjective. Objective measures take their significance from this subjective component.[7-11] If it were otherwise, one could meaningfully apply quality of life measures to automata or to machines that have been designed or programmed to mimic human behaviour. This means that quality of life is subjective not simply in the sense of being relative to each individual — i.e., not simply in the sense that how quality of life it is experienced varies from person to person — but subjective in the sense that the notion itself has a phenomenal core. Experience is integral to the notion. In fact, the objective measures are meaningful only insofar as they measure external indicators of this subjective phenomenal parameter. It is only when the objective indicators are treated as indicators — which is to say, as observable evidence for what the subject experiences — that they are quality-of-life indicators rather than mere material factors
That is why it makes no sense to talk about the quality of life of patients who are cerebrally dead or patients who are brain-dead and are biologically alive only because their bodily functions are maintained by life-support. Such patients, being no more than biologically alive bodies, lack awareness of any meaningful sort and at any meaningful level.[12] However, it does make sense to talk about the quality of life of cognitively aware patients who are minimally aware, and to use both objective and subjective measures in the latter case. In their case, the objective measures can be correlated — even if only tenuously — with subjective experiences. Even when these patients are functioning at a merely somatosensory level with hardly any cognitive awareness (for instance, a neonate), there is that subjective experience, and the objective measure scan be correlated with it.[13-16] Analogously, it makes marginal sense at best to talk about the quality of life of a patient in a permanent vegetative state (PVS) who has no cognitive awareness because there is very little if anything with which the objective measures can be correlated.[17-21] Finally, it also makes no sense to talk about the quality of life of patients in a coma. Comatose patients have neither sentience nor awareness. While comatose, they are merely biologically alive,[18-22]] and there is nothing at all with which objective measures could be correlated. Consequently, in their case, any talk about quality of life is metaphorical and anticipatory. In their case, it makes sense to talk about quality of life only if there is an expectation that the patient will recover to some level of sentience. In that case, however, the talk is not really about the quality of life of the comatose patient here-and-now but about what kind of quality of life one anticipates that the patient will have once the patient has recovered from the coma.
Which leads to the next point. If quality of life has an ineluctable phenomenal experiential component, then the nature of the experience will determine the nature of the quality in question. Here there are three logical possibilities: Purely somatosensory experience, purely cognitive experience and experience that combines both somatosensory and cognitive parameters.
Purely somatosensory experience is familiar to physicians from foetuses, neonates (and, possibly, patients in a PVS). To borrow a phrase from Immanuel Kant, their experiences are “blind.”[23] By contrast, purely cognitive experience would be the sort of experience that someone has who is self-aware or conscious but who has no bodily sensations (i. e., no somatosensory experiences) at all and whose awareness consists solely of cognitive memories and thinking. It is unclear whether any patient is ever actually in this condition, although perhaps patients who suffer from total paralysis and loss of all sensation with no auditory, visual, gustatory, etc. experiences but whose higher brain centres show neural activity, may fall into this category.[24] However, since there really are no data on this type of experience, this category will be dropped from further consideration.
The third category combines both somatosensory and cognitive components. One is here dealing with the sort of experiences with which physicians are familiar from most of their patients. While the level, acuity and complexity of the experiences may differ from patient to patient and even from situation to situation for the very same patient, the term ‘experience’ applies because not only is there a qualitative content but also cognitive significance. At this level, pain is not simply nociception but the conscious experience of pain.[25]
The notion of quality of life that is appropriate for each of these types of experiences is distinct. If one can extrapolate from neurological studies of non-human vertebrates and of patients in a PVS, purely somatosensory experience C what is sometimes referred to as primary awareness[26,27] C is not experience in the normal sense of the term at all. It has qualitative content but lacks cognitive (although not necessarily reactive) significance.[28] Thus, while there may be the ability to generate an inchoate mental scene in which diverse data are integrated for the purpose of directing behaviour, that ability is instinctive and is unaccompanied by conscious awareness.[29-31] Therefore the concept of quality of life that is appropriate for someone functioning at this level must necessarily be limited to considerations of qualitative content at this level; that is to say, it must be limited to considerations that confine themselves to somatosensory experience qua somatosensory experience. Considerations of hopes, fears, future and so on simply do not apply, and issues of stimulus-enhancement or environmental enrichment, social embedding, etc. are irrelevant except insofar as they may lead to more complex neurological reactions on part of the individual
By contrast, the concept of quality of life that is appropriate at the combined level of experience has room for all of these notions. At this level, therefore, the notion of quality of life is not only multi-dimensional in the sense of including the distinct qualitative parameters that go along with the various senses, but multi-dimensional in the sense of including non-somatic parameters that involve cognitive processes and content and a more-or-less developed self. Questions of social embedding, self-perception and life-satisfaction now have relevance, as do questions that deal with future plans, hopes, fears, etc.
Some problems for substitute decision makers

These considerations have important implications for substitute decision-making. Substitute decision makers must make sure that the quality-of-life measures on which they rely when making their decisions are appropriate to the situations of the incompetent persons.

On the surface, this looks like a relatively manageable task. However, a moment=s reflection shows that it may actually be quite problematic. First, in order to choose the right tool, decision makers need the best possible patient-data — including neurological data. These may not always be available in the clinical setting, especially when diagnostic tools are limited and there is no way of obtaining the relevant data without transferring the patient to another setting. In such cases, the transfer may require stabilizing the patient. Quite often this means that the decision to treat the patient has effectively been made independently of quality of life considerations, because once the patient has been stabilized, to cease treatment would be to become the passive agent of the patient=s death. For legal reasons,[32] some physicians are reluctant to re-evaluate the appropriateness of treatment under such circumstances on the basis of quality-of-life considerations even if they are specifically requested to do so by an appropriately placed substitute decision maker because they believe that once treatment has been initiated and continued treatment is technically possible, it should not be stopped.
Second, there is the question of which quality of life measure to use. This is problematic because the application of quality of life measures carries hidden value assumptions. That is to say, in and by themselves the numerical values that these quality of life measures provide are meaningless as far as decision making is concerned.[33] They are mere numbers attached to qualitative criteria which in and by themselves are qualitatively neutral. The numbers become meaningful only when values are attached to the qualities that are being measured.[33,34] The question then becomes, how a given state or quality should be valued. This becomes difficult to decide when there are no advance directives, when there are no clearly identifiable social value-indicators that are relevant to the case or C and this may be even worse C when there are clearly identifiable social values but they tend in opposite directions. For example, physical survival as such is clearly valued by society. However, the ranking scale that is attached to it differs for those who value all life equally as opposed to those who value life only if it involves more than mere sentience but includes the ability to function (minimally) in a social setting.[33]
Third, there are two kinds of quality-of-life measures, and treating them the same is a logical mistake with serious ethical consequences. On the one hand, there are quality-of-life measures that measure the current quality of life of the patient here-and-now; on the other hand, there are quality-of-life measures that look at the projected state of the patient in the future.[33] Quality-of-life measures that measure the current quality of life will assign a different value to the life of a patient who will not progress beyond the present state but is perfectly comfortable C who shows no signs of physical distress, etc. C than quality-of-life measures that look at the projected state of the patient in the future.
The difference between the two types of measures and the implications that this has for substitute decision-making are clearly illustrated by the following example. It is taken from the judgement in the case of a six-year-old boy who, as a result of a nosocomially acquired meningitis, was suffering from hydrocephalus and needed a shunt revision because the increased intra-cranial pressure resulting from the blockage of the shunt was progressing to coning.[35] Tests had shown that the boy had a “only a rim of brain tissue in the left frontal lobe.”[35] On two previous occasions the parents, faced with a similar situation, had agreed to a revision. Each time, as a result of the inevitable lag-time between the actual occurrence of the blockage and its symptomatic presentation, further damage to the remaining cerebral tissue had occurred and the boy=s neurological state and level of functioning had deteriorated even more. On this occasion, the parents had been advised by the attending paediatric neurosurgeon that the child was functioning at an essentially “punitive” level with no cognitive awareness, and that the prognosis was for an inexorable decline as time went on and the shunt would again have to be revised. The parents, with the agreement of the neurosurgeon and the family physician, decided against the revision because, in their opinion, the quality of life of their son was not worth living. The judge overruled the parents’ decision. His reason for doing so was that the parents had used the wrong quality-of-life measure. As he put it,[35]
The decision can only be made in the context of the disabled person viewing the worthwhileness or otherwise of his life in its own context
In other words, what was here at issue was whether substitute decision makers may decide against treatment if the patient lives only at the somatosensory level and there is only a negative prognosis for cognitive development. The judge used one approach to quality of life: namely, the quality of life as experienced by the patient here-and-now, at the current state of development irrespective of what the future might hold. The parents and the neurosurgeon used a different approach: namely, one that took into account not merely the present state of the patient here-and-now but also what might happen to the patient in the future.
Fourth, the assumption that quality-of-life measures all measure the same thing creates serious logical problems for the use of quality-of-life measures by substitute decision makers. That is to say, the fact that all quality-of-life measures are classified under the rubric of “quality of life measures” suggests that they all measure the same thing. That, however, is not the case. If, as the preceding judgement suggests, there are different perspectives on quality of life and different measures should be used for different types of patients with different kinds of conditions, then the concept of quality of life itself is systematically ambiguous. This, in turn, means that statements about the quality of life of a patient are meaningful only relative to the measures that are being used, and that they say nothing about quality of life as such.
This last is not the standard problem of concordance or inter-rater reliability. Concordance or inter-rater reliability is an issue that confronts all measuring tools, no matter what they are intended to measure, and there are standard ways of dealing with it.[36] This problem is much more pernicious. It is the problem of the inter-measure consistency of the quality of life measures themselves. Simply choosing any old quality of life measure in response to a question about quality of life is to treat the notion of quality of life itself as though it was a homogeneous concept when in fact it is not. Therefore if substitute decision makers are going to rely on quality of life measures to make a decision, they must keep in mind that quality of life measures do not measure the same thing and that the phrase “quality of life” is so systematically ambiguous that to treat the measures as measuring the same thing is to commit the fallacy of equivocation.
Finally, and distinct from all of this but central to the present discussion, is the issue of what substitute decision makers should do when faced with having to make decisions for neonates and very young children who currently do not function at a cognitive level but have the potential for cognitive development. The reason, as has been indicated, lies in the fundamental changes that occur in the experiential framework of these developing patients. As significance and meaning are added to the developing infant’s somatosensory experiences, what previously was a merely experiential framework becomes a perceptual framework. Both as a matter of logic and of ethics, substitute-makers should take this factor into account when considering the quality of life of their charges because the very meaning of “quality of life” has changed.
Experiential frameworks, quality-of-life and developing awarenesses

As was said, current quality of life measures do not allow them to do so. That is to say, in standard subjective quality of life measures, numerical values are assigned to the qualities that are being measured on the underlying assumption is that while the framework may change in complexity, it will not change in nature.

However, what is precisely what is not the case. The experiential framework of the developing infant is not static. First, it acquires a dimension that may be called “subjectivity.” This is the subjective element that Kant called the “I think” or “transcendental unity of apperception.”[23] It comes to accompany every experience in the sense of becoming the very framework of that experience. In this cognitive development, what previously was a mere somatic experience becomes a subjective somatic experience and involves the individual as an experiencing self. In other words, the neonate’s progression from the somatosensory state to the perceptual state involves a restructuring of the experiential framework by the addition of a subjective dimension. As the baby matures and develops a body image and an awareness of the self, the baby’s somatic experience-of-pain which is caused by a cut in the left foot becomes the experience of pain-in-my-left-foot. It acquires cognitive and subjective significance. The same thing holds true of all the neonate=s experiences. Standard quality-of-life measures are insensitive to this aspect of quality of life.
Second, even this subjective dimension undergoes a profound change by becoming temporally extended as the baby develops and acquires the actual concept of a self.
That is to say, and speaking generally, the awareness of oneself as a self is a temporally extended awareness in the sense of having a temporal dimension that goes beyond present and past/remembered experiences. It is an awareness that acquires the characteristic of being-open-to-the future, where this openness-to-the-future is not an item in the conceptual framework but a structural element of the conceptual framework of the individual who is self-aware. In other words, the perceptual framework that develops from the initial and merely somatosensory framework acquires not only cognitive richness and depth but also futurity: It acquires an extended temporal character that transcends the experiential present of the here-and-now.[33,37] Individuals come to see themselves as being embedded in a social context and having both a past and a future. This is a gradual process, as child psychology has well documented,[38-41] but it does occur and it seems to be well entrenched by the time that children reach anywhere from six to ten years of age.[42,43] It is essentially the change from a mere awareness to a self-awareness.
Third, hand in hand with the development of a genuine self-awareness goes the development of values. Values are action potentials,[44] and as the infants mature these values begin to replace merely somatic drives,[45,46] thereby turning the individual from a being who merely reacts into someone who is a genuine agent.
The features that have just been highlighted are what one might call framework features because they are characteristics of the framework of the truly cognitive world view that develops over time in infants who have cognitive developmental potential. For that very reason, they are integral to the quality of life of the experiencing subject who is self-aware. Unfortunately, currently (subjective) quality of life measures do not take these features and these developments into account. They treat all experiencing the same way. That is to say, all somatic experiences are treated similarly irrespective of the level and type of awareness; and if developmental parameters are acknowledged at all, they are acknowledged only with respect to an increase or decrease in the intensity of what is measured. The increase in experienced cognitive significance C which is really what lies at the heart of subjectivity itself C is ignored. Emotional aspects of the experiences are also treated in this limited fashion.
Substitute decision-making for neonates and young children

All of this has tremendous implications when it comes to making substitute decisions for neonates or young children who are likely to survive if they receive appropriate medical intervention but who will die an early death because they suffer from debilitating and incurable conditions. Examples would here be neonates with Tay-Sachs disease,¹ Louis-Bar Syndrome,² recessive dystrophic epidermolysis bullosa³ or ataxia-telangiectasia⁴ who will survive if treated but will die in their teens at the latest.

Children who suffer from these conditions and who survive to the stage of sapient cognitive awareness just described grow into a subjective perceptual awareness that includes the realization that their lives are not merely deprived in the sense of involving severe disabilities but also temporally limited. This is not like the awareness of a limitation in the sense of disability or lack of opportunity, as might be the case with children who grow up with physical or mental handicaps or with children who grow up in a socioeconomically deprived environment. These children all have a future — it may be bleak, but it is a future nevertheless — and this is reflected in their awareness. By contrast, in the case of the children under discussion, the awareness is an awareness of having no future at all.
It is also not like the awareness of mortality that all human beings acquire. This awareness of death is not uniquely ethically problematic for the case of neonates and young children. All other things being equal, it is an awareness that every person must face because it is an integral part of being human. The awareness of one=s mortality, therefore, does not itself constitute a qualitatively unique aspect of the developing perceptual framework that characterizes the world view of these children. What is unique, and what make both an ethical and a qualitative difference, is the fact that these children mature into a world view that is characterized by the awareness that they have been kept alive only to die an early death. There is a fundamental qualitative difference between becoming aware that one will die because one is human, and becoming aware that one will die before one has the opportunity to realize any of the potentials that one has as a human being and that other human beings enjoy. The structure of this awareness is different not in content but in meaning. That is why it makes a difference in the quality of life. To put it in a nutshell, such children have no quality of life; they only have a quality of dying.
Keeping alive and causing harm

The reason why this is ethically relevant can be approached in two ways: From a value-theoretical perspective by asking whether the death of a child that is at the threshold of maturity is worse than the death of a child at the beginning of its cognitive development; and from a more abstract ethical perspective by asking the general question which is better: To prevent harm or to allow preventable harm to occur and then deal with it?

Future interests and producing harm

As to the first approach, it has been persuasively argued by McMahan [47] and others [33,37] that persons qua persons are linked to their past by what they remember and to their future by what they expect. All other things being equal – i.e.., there being no cognitive or mnemonic deficits, etc. - as persons mature and increase in cognitive awareness, the strength of these links conditions how much the future matters to them. This means that a person’s future increasingly matters to that person as that person grows in awareness. A teenager’s future matters more to the teenager than the neonate’s future matters to the neonate. A person’s well-being is a function of whether what matters to them is achievable. Consequently, to be deprived of a future is worse for a teenager than for a neonate. Therefore the badness of a death is relative to stage of awareness of the dying person. It follows that to keep neonates alive to the point where they will realize that they will die an untimely death is worse than to allow them to die before they attains the awareness of their untimely death.

The same point can be put purely logically by beginning with the fact that like all human beings, the neonate will die sooner or later anyway. In other words, the harm of death as such is a constant for all human beings. Moreover, it is constant for the mortally disabled neonate whether she is treated or not. She will die on either eventuality. The only question is which course of action produces more harm over and above this constant harm of ultimate death: allowing the neonate to die while she has not yet developed an awareness of this fact, or keeping the neonate alive for a few more years through medical intervention and then having the neonate die in full awareness of the futility of all her interests.
As the preceding has shown, keeping the neonate alive and allowing her awareness to grow will increase the strength of the neonate’s links to her future and the interest she has in it. The awareness of untimely death increases as awareness increases. Consequently, the awareness of the futility of all interests increases as her awareness increases. Since this awareness does not exist at the beginning of the neonate’s life, keeping her alive produces a harm that does not exist in the beginning and that is additional to the ultimate harm of death that all persons must face. Therefore keeping alive a neonate who will inevitably die in her early teens will produce a harm that would not exist if the neonate died before she reached that stage of awareness. Therefore keeping the neonate alive is ethically worse than allowing the neonate to die before she reaches that stage of awareness because it produces a harm that would otherwise not exist.
Beneficence and Non-Malfeasance

The more abstract ethical argument goes as follows: It is generally accepted that it is one thing to deal with harm that exists independently of one=s own actions; it is an entirely different matter to bring about that harm in the first place and then to try and ameliorate it. The first is ethically praiseworthy and is called compassion, humanity, etc. It is to act in accordance with the Principle of Beneficence. The second is ethically objectionable because it involves bringing about preventable harm in the first place — which is to injure the other person — and then trying to ameliorate that injury later on. Here the action on the basis of Beneficence is preceded by — and indeed is parasitic on — a violation of the Principle of non-Malfeasance.

An awareness that is pervasively conditioned by the fact that one has no future is an awareness that one is fundamentally deprived. Awareness of fundamental deprivation constitutes mental suffering. It is therefore a species of harm.[48] In many instances, the physical suffering that is experienced by developing persons who are in this position can be ameliorated by appropriate medical treatment; however, the mental suffering that is integral to this all-pervasive awareness of hopelessness and deprivation. Even counselling or providing religious or philosophical solace does not change this fact. At best, all these can do is ameliorate the suffering by encouraging the individual to accept the inevitable. However, that does not get rid of the harm itself.[49] To argue otherwise is like saying that one gets rid of the harm caused by discrimination by counselling the people who are discriminated against to accept the fact of discrimination.
If these considerations have any validity at all, then substitute decision makers who have to make treatment decisions about neonates and very young children who are seriously disabled and can be save but who inevitably will face a premature death, are confronted with a serious ethical and logical problem. What kind of quality of life considerations are appropriate, and how should they be incorporated into their decision-making? That they should take quality of life into account seems fairly clear; however, how they can do so in a genuinely meaningful manner, given the current quality-of-life measures that are at their disposal, is anything but clear.
Ethics Meets Reality

At this point, it is tempting to object that it is one thing to identify, from a theoretical perspective, the need for a particular type of action; it is another to translate that theory into reality. Specifically, the requirement that one develop what essentially amounts to a variable-framework measure for quality of life and that one integrate this into substitute decision-making for persons whose awareness is still developing poses an impossible challenge. It not only requires that one somehow be able to understand the subjective experiences of individuals with developing awareness, but also that one be able to predict the values to which such individuals would subscribe if and when their awareness is fully developed and they have attained full cognitive awareness.

The first, so it may be argued, is a more complex version of the classic philosophical problem of other minds. I.e., it not only assumes that one can somehow tell what the subjective experiences of others are like, it also assumes that one can tell this when, ex hypothesi, those subjective experiences are of an entirely different type (being initially inchoate, cognitively undeveloped and evolving) from the experiences that one is oneself experiencing as a cognitively developed individual.
The second can be characterized as the problem of how to predict what others will feel at some time in future. Logically, that is the classic philosophical problem of future contingents. Arguably, that problem is unsolvable. Unless the universe is completely deterministic, and unless one has full knowledge both of the laws of nature and is in possession of a complete description of the present state of the universe, one cannot know the truth-value of a statement that describes a future event of state of affairs until that state or event has actually come into existence.
Various attempts have been made to deal with both of these problems. The problem of other minds has exercised thinkers like Ayer,[50] Malcolm,[51] Price,[52] Putnam,[53] and Wittgenstein [54] (to mention but a few of the more prominent thinkers), and the problem of future contingents has a long and varied history that extends from classical authors like Diodorus Cronus [55] and Aristotle[56] to modern writers such as Belnap,[57] Lukasiewicz,[58] Prior[59] and MacFarlane.[60] Neither of the problems has been solved — which seems to breathe life into the old saying that while something may be valid in theory, it may fail to be applicable to reality.

A Proposal

However, in this connection it might be useful to recall what Kant said about theoretically necessary but practically impossible tasks: “..[E]verything is lost if the empirical and therefore contingent conditions, which are based on considerations of probability that are derived from previous experience, are made the condition for fulfilling a law itself.”[61]⁵ In other words, the problem may not lie with the theory but with the fact that the task of translating the theory into practice — in this case, the development of an appropriate measuring tool — is approached in too limited a fashion.

How does this apply to the present context? The answer is simple. Even though there are no tools to measure the evolving awareness of children as they develop, there are tools to measure the subjective quality of life of children in the standard way — which is to say, the quality of life that is experienced by them according to standard somatosensory and cognitive parameters.[5,10,11,62,63] This could form the basis of a two-pronged approach. On the one hand, the existing subjective quality-of-life measures for children could be applied longitudinally and in iterative stages to neonates and young children who are being treated and saved according to current standards — in other words, on children who fit the profile of this paper. On the other hand, the objectively based quality of life measures for children could also be used to develop a similar array of objective quality of life values for each time period for which the current subjective tools wold be used. These two types of values could then aggregated for each temporal stage to yield a combined quality of life measure for each stage within the developmental history of such infants. This would yield stage-relative quality-of-life coefficients for these severely compromised infants over the length of their expected lives. This would allow proxies to determine the probable quality of life profile for severely disabled neonates for their expected life-span.

A similar study could then be done for neonates who do not suffer from any deficits, and corresponding combined subjective-objective quality-of-life coefficients could be developed for the same temporal life stages as for the compromised infants. The coefficients of the values for the two types of infants could then be compared. If, for any stage in the life histories, the aggregate longitudinal quality of life coefficient for the compromised infants was less than the aggregated longitudinal quality of life of the uncompromised infants, then keeping the compromised infants alive to that stage would clearly be to produce harm.

To apply this approach, the substitute decision makers would determine, to the best of their ability, the life-expectancy of the compromised infants. Using the aggregated longitudinal quality of life coefficients, they could then identify what he expected quality-of-life coefficient of the compromised infant for their given life-expectancy would be. The quality of life coefficients for the compromised infants at their anticipated life expectance would then be correlated with the quality-of-life coefficients of the uncompromised infants at a corresponding life-span. If the quality of life coefficient for the expected mortality date of the compromised infant was below the quality of life coefficient of an uncompromised infant at that age, the substitute decision maker would then have a reason for not imitating life saving and/or sustaining treatment in the first place; if the coefficient was at or above that mark, the substitute decision maker would choose in favour of treatment.
How would this approach differ from simply using currently available quality of life measures, and in what sense would it address the problem of developing awareness? The first is the easier question to answer. Current tools measure quality of life (subjectively or objectively) only relative to a particular stage. The proposed approach would provide a means for evaluating the slope of the quality of life and permit projection into the future. The latter in particular is important because substitute decision makers have to make decisions not simply for the here-and-now but in anticipation of what is to come.⁶
However, while having such a tool would be useful, it is the second question that is central to the problem at hand. In order to come anywhere near dealing with the original issue, the approach thta has just been sketched would have to be amended to include a modification of current child-centred quality of life measures by the inclusion of a series of questions — appropriately adjusted for age — that would identify the existence of life plans, of hopes for the future and the frustration resulting from the awareness that neither hopes nor plans would ever be realized. Most importantly, there would have to be a question, measured in an ipsative scale,⁷ where the choice would be between having been kept alive to this point in their lives and having been allowed to die. These would again be applied iteratively to develop an aggregated scale similar to the one provided by the measures already discussed. Being this modified, this approach would yield values that incorporate the fact of developing awareness and its implications for quality of life in that, being iterative at the various stages, the values reflect the fact of developing awareness and its effect on subjective life experience.
There is one drawback to this approach — or, more correctly, there is one set of circumstances under which even this approach would fail — and there is one further question that could be asked at this juncture. The question first: Why introduce the added complication of developing aggregated subjective-objective quality of life coefficients? Why not just go with the ipsative scale, since it is this that provides the variable framework data for developing awareness?

The answer lies in the fact that one of the core areas of incompetence of young children is their lack of world experience. This may interfere with the ability to develop a reasoned (and reasonable) appreciation of their position and its implications. The aggregated quality of life coefficients serve as a balance for potentially unreasonable albeit genuine evaluations on their part.

As to the drawback, the approach that has been sketched, despite its modifications it would be inapplicable in the case of neonates and very young children who would be expected to die before they have acquired sufficient cognitive ability to interact meaningfully with their caregivers and provide subjectively meaningful quality of life data even on the modified approach. The reason for this lie in the fact that no correlative subjective quality-of-life coefficients could be developed and no ipsative scale could be derived in their case because such infants would not have developed sufficient awareness to be able to provide anything like a meaningful answer.
However, this would not undermine either the acceptability or usefulness of the proposed approach. The sorts of cases where this approach would be useless would either be cases where the compromised infants would die within the first three years of life, or where the compromised infants would not only have severe physical but also severe mental disabilities. In both cases, the very fact that insufficient cognitive awareness is present to allow the development of appropriate ipsative measures entails that they are not cases of developing awareness in the sense under discussion. Therefore current practice — which consists in being guided by considerations that centre in somatic experiences — would be entirely appropriate.
Conclusion

Quality of life has become an important consideration in substitute decision-making, and quality-of-life correspondingly, the measures that have been developed to measure quality of life are neither interchangeable nor even logically on a par. The situation is complicated further by the fact that there is no quality-of-life measure that can measure the quality of life of an incompetent person whose awareness is developing and, moreover, that is developing into an awareness that the individual is without a future: that is to say, into a consciousness that is coloured by an overarching awareness of limitation and dying. Intuitively, the life-experience of someone whose awareness is conditioned in this way is qualitatively different from the life-experience of someone whose awareness is not. Intuitively, therefore, this should be taken into account by substitute decision makers when deciding what to do with neonates who can be saved but who will be saved only to die an early death. Unfortunately, there are no quality-of-life measures to assist them in this regard. If substitute decision makers have a duty to make decisions in the best interests of the incompetent persons, can they really fulfil their duty without such a tool? Or does the fact that there is no such tool mean that the issue should be ignored?

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1An incurable degenerative neurologicla disease. Death usually occurs before age five but may not occur until the teens.

2A degenerative neurological brain disease. Death usually occurs in early teens.

3A rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma. Death usually occurs before age ten.

4A rare, childhood neurological disorder that causes degeneration in the part of the brain that controls motor movements and speech. Death occurs usually in the teens.

5“... alles verloren ist, wenn die empirischen und daher zufälligen Bedingungen der Ausführung des Gesetzes zu Bedingungen des Gesetzes selbst gemacht,.. ‘ (transl.. Kluge)

6With due alteration of detail, the same approach could also be used for quality of life-based decision making for persons other than neonates.

7A type of measure in which respondents compare two or more options and pick the one which is most preferred (sometimes called a "forced choice" scale). In this case, the choice would be between having been kept alive to this stage and having been allowed to die.