Substitute Decision Making for Neonates and Young Children:
The Problem of Developing Awareness
Eike-Henner W. Kluge
University of Victoria
Contact information:
Eike-Henner W. Kluge PhD
Professor, Dept. of Philosophy
Associate, Centre on Aging
University of Victoria
Victoria, BC, Canada V8W 3P4
tel: (250)721-7519
fax: (250)721-7511
e-mail: ekluge@uvic.ca
1
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
2
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.
3
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.[1721] 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.
4
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.
5
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] Qualityof-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
6
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-andnow 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
7
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-inmy-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-opento-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.
8
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.
1
An incurable degenerative neurologicla disease. Death usually occurs before age five but may not occur until the
teens.
2
A degenerative neurological brain disease. Death usually occurs in early teens.
3
A 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.
4
A 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.
9
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 valuetheoretical 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.
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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 variableframework measure for quality of life and that one integrate this into substitute decision-making
11
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
“... alles verloren ist, wenn die empirischen und daher zufälligen Bedingungen der Ausführung
des Gesetzes zu Bedingungen des Gesetzes selbst gemacht,.. ‘ (transl.. Kluge)
5
12
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.
Aggregated Longitudinally Calculated Quality of
Life Coefficients for Severely disabled Neonates
Aggregated descending QOL
Aggregated ascending QOL
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
13
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 hereand-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 childcentred 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.
6
With due alteration of detail, the same approach could also be used for quality of life-based
decision making for persons other than neonates.
7
A 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.
14
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 qualityof-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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