In Esther’s case, her profound neurological developmental disorder will, we contend, unquestionably affect her future well-being. However, how it affects her well-being, and to what extent, will depend upon the theory of well-being that is applied as well as her specific circumstances.
One obvious way that profound cognitive impairment affects well-being is through its effect on a child’s ability to realise objective goods—elements of well-being that are regarded (by some at least) as constitutive components of human flourishing. Conditions or disabilities that lead to loss of capacities or functions do not always cause net reductions in well-being, since there are many different ways of achieving a fulfilling life. As Adrienne Asch and David Wasserman point out, ‘human beings enjoy a fortunate redundancy in many of the capacities that are instrumental for, or constitutive of, valuable human goods and activities’ [17, p. 208]. However, some forms of disability and some degrees of disability can make it extremely difficult if not impossible to attain valuable human goods or engage in valuable human activities.Footnote 9
For example, James Griffin lists accomplishment, agency, understanding, enjoyment, and deep interpersonal relationships as constituents of well-being [19, p. 67]. It appears that Esther may have no prospect of accomplishment, agency, or understanding, although she may remain capable of enjoyment and deep interpersonal relationships.Footnote 10 On other accounts of well-being, there may be more elements potentially missing for Esther. Derek Parfit lists ‘moral goodness, rational activity, the development of one’s abilities, having children and being a good parent, knowledge, and the awareness of true beauty’ [8, p. 499], all of which will potentially be absent for Esther.Footnote 11
The relevance of Esther’s impairment here is its likelihood of reducing positive objective elements of well-being in her future life. Like a reduced lifespan, reduced well-being should be thought of as an absence of or reduction in benefits. These absences do not constitute negative well-being, though they may mean that negatives more easily outweigh positives and may render her more likely to have negative net well-being.
However, Esther’s neurological disorder may also affect her positive and negative subjective experiences. In what follows, we present three different views about the effect of profound cognitive impairment on subjective experience: positives and negatives attenuate symmetrically, negatives attenuate more yielding a net benefit, or positives attenuate more yielding a net reduction.
One possibility is that severe neurological disorders causing profound cognitive impairment reduce positive and negative experiences symmetrically. A child who has reduced awareness might miss out on certain experiences that would have caused pleasure, but she might also miss out on certain things that would have caused sadness or displeasure. As an example, children with profound cognitive impairment will almost certainly never experience the pleasure of romantic love, but they will also never experience the anguish of a broken heart or unrequited love.
One could think of this attenuative process as analogous to the volume control on a stereo or radio. Turning down the volume by rotating the dial reduces both pleasant and unpleasant sounds—and it potentially does so to an equal extent. If assessments of overall well-being reflect the balance between positives and negatives, then the net effect of cognitive impairment on a child’s subjective well-being would be, on this view, neutral. To take another perspective: if one imagines a random group of children and considers their overall well-being, some will be very happy, having many more positive than negative experiences, others will be the opposite, and many will be somewhere in the middle, having an average mix of positive and negative experiences. If one now considers a group of children who are profoundly cognitively impaired, but with otherwise identical features, the distribution of subjective well-being would be identical on this view.
Asymmetrical attenuation—net benefit
In terms of subjective well-being, it would be very good if profound cognitive impairment had no net effect. Then parents of children like Esther could find reassurance in the knowledge that their child is no more likely to be unhappy than any other child. However, it seems somewhat implausible that this would be the case. Severe neurological disorders causing profound cognitive impairment radically change the things that a child will experience as well as the way in which she will experience them. Their effect on the overall balance of subjective well-being might be neutral, but one should not simply assume this to be true.
One possibility is that reduction in cognitive capacity eliminates some sources of distress or negative experience while allowing children to continue to experience positives. In particular, children might be less likely to be aware of themselves and the things that they are unable to achieve. They might also be less likely to undergo certain types of negative experience, such as anticipatory anxiety. Reduced cognitive capacity might then have a net positive effect on subjective well-being.
Elsewhere, one of us has described a form of this phenomenon as the ‘tolerability paradox’ . In the setting of progressive cognitive decline, adults with dementia can experience a phase during which they are distressed by the loss of capacities and abilities that they formerly took for granted and potentially depressed and anxious at the prospect of what lies ahead for them and their families. However, as their dementia deepens, these sources of distress may disappear. With loss of awareness, their subjective experience may become more tolerable, even as their condition worsens.Footnote 12
It seems possible that children with severe cognitive impairment might be happier overall (or more likely to be happy) than children with milder degrees of cognitive impairment. If that were reliably the case, parents of children diagnosed with severe brain disorders would perhaps have even more reason to be consoled than they would on the symmetrical attenuation view.Footnote 13
Asymmetrical attenuation—net reduction
While profound cognitive impairment could have a net positive effect on well-being, the opposite possibility should also be considered.
One reason for thinking that the balance of subjective well-being might be tipped in a negative direction relates to the arguments that we developed in the first section of this paper, where we suggest that the neonatal period and early infancy contain more negatives and fewer positives relative to later life stages. The negative subjective experiences of newborns can be intense and prolonged, and they may have fewer or less intense counterbalancing pleasures. Some may believe, for this reason, that a newborn who dies at six weeks of age has had a life of negative net well-being, or (less controversially) has experienced less well-being than she would have in a corresponding six-week period later in life.
If this belief is correct, then it would also potentially apply to children whose cognitive capacities remain at the level of a newborn or early infant.Footnote 14 Indeed, there are some children, and Esther may fall within this category, who will never develop beyond this early developmental stage. The concern may be all the greater for some neurologically impaired children who manifest extreme cerebral irritability . In such children, ordinary stimuli may (or may appear to) lead to substantial distress, and it seems plausible that their overall well-being would be negative.
However, whether or not the above arguments about the subjective well-being of newborn infants hold, it is necessary to consider the situation of children whose cognitive capacities and awareness may be considerably lower, even, than a newborn. Some children may have only minimal levels of consciousness or awareness throughout their life. What effect would such impairment have on overall well-being?
We offered an analogy earlier, suggesting that cognitive impairment might diminish experiences similar to how the volume dial on a stereo reduces sounds. However, turning down the volume on a stereo does not always reduce positive and negative sounds equally. Sometimes unpleasant sounds are louder or more acoustically salient than more pleasant or interesting ones. Many will have had the experience of a radio whose volume is turned down sufficiently low that it is not possible to follow conversations or hear melodies, but some unpleasant or annoying sounds can still be perceived. Could there be anything similar for conscious experience? It is, of course, epistemically challenging to know what life is like for those who are minimally conscious. We suggest, however, that the experience of physical pain and discomfort is one of the most basic neural sensations. As such, physical pain and discomfort could potentially be present even at extremely low levels of consciousness. The corresponding positive basic sensations (perhaps satiety, comfort, or physical pleasure) might require a higher level of awareness.
A comparison can be drawn with surgical anaesthesia. The aim of such anaesthesia is obviously to remove sensation (and recall) of pain.Footnote 15 With higher doses and more potent combinations of anaesthetic agents, the anaesthetist induces deeper levels of unconsciousness, reducing the chance that the patient will perceive pain during surgery. In this way, more painful procedures will require more anaesthetic agents. At lighter levels or planes of anaesthesia, it is possible that the patient will perceive pain , but it is far less likely that the patient will experience positive physical sensations.Footnote 16 If this comparison holds, it might apply, for example, to patients in a minimally conscious state. Disorders of consciousness exist on a spectrum—coma, persistent vegetative state, minimally conscious state, and severe neurological impairment . Patients with minimal levels of consciousness might be like patients who are partially anaesthetised—they are potentially capable of experiencing physical pain, but incapable of experiencing counterbalancing pleasures.
We could call this claim the dyshedonia hypothesis.Footnote 17
Dyshedonia hypothesis. Very low levels of consciousness are associated with overall negative well-being, since in such states it is possible for one to perceive pain and negative sensations but not possible (or less likely) for one to perceive positive experiences.
If this hypothesis is correct, it would be very bad, for example, to be in a minimally conscious state .Footnote 18
We have outlined three different views about what might happen to subjective well-being with profound cognitive impairment—symmetrical attenuation, asymmetrical benefit, asymmetrical diminishment. Which of these is correct? The challenge, of course, is that there is no way of definitively answering this question. When it comes to the subjective experience of those with profound cognitive impairment, one can never know what life is like. Some may suspect that such impairment is hedonically neutral; some (who are perhaps more optimistically inclined) may think that it is a positive; and others may take a more negative view informed by the dyshedonia hypothesis.
We cannot know, but here is one proposal: perhaps all three of these views may apply, but at different levels of impairment. Some degrees of cognitive impairment may have no net effect on subjective well-being. At more severe levels of impairment, there may be a relative positive effect on subjective experience. And at the most profound levels (corresponding to minimal consciousness), the dyshedonia effect may predominate.