I am going to restrict myself to comments on two kinds of case. Both bring a number of additional moral complications into play – appealing to an account of phenomenal value will be of some assistance, but will certainly not answer every morally relevant question. To illustrate this I introduce the cases with brief descriptions.
Case one: traumatic brain injury
Say that a person, P, is injured in an accident, survives, and is diagnosed as being in a Minimally Conscious State (MCS). There is little chance for recovery out of MCS. P’s partner, T, visits P frequently and notes some evidence of awareness of P’s surroundings. P occasionally smiles, and occa-sionally indicates discomfort. Some in T’s family ask whether T ought to press to have artificial nutrition and hydration removed. T is not willing to do so initially. This is because T and P had multiple conversations about just this kind of scenario, and P never indicated he would want to be allowed to die in such a condition. In fact, P indicated a kind of curiosity about the condition, once remarking: ‘no one really knows what it’s like to have such severe brain injuries. What if it’s not bad at all? What if it’s pretty good?
Why end your life early if your life is going pretty well?’ However, the more T visits P and speaks to doctors, the more she worries, and the more she begins to have doubts. Even if P’s life is going ‘pretty well’ in some sense, it is clear that P and T’s relationship has drastically changed. Indeed, it is no longer clear to T that P could be considered the same person he was. T begins to worry that P’s life could be going well enough to justify continu-ing with physical therapy, medical treatment, and so on. T feels terrible about having such thoughts, and articulates them to no one. What T really wants to know is more about what it is like to be P in his current condition.
What kinds of experiences is he able to have? Are there any that are very
102 Moral status and difficult cases
good, or any that are very bad? How could she contribute to giving him a better quality of life?
As the case of P and T illustrates, there are many morally relevant factors at issue in cases of traumatic brain injury (see Shepherd 2016b). There are questions about P’s prior wishes. There are questions about what is in P’s best interests now. There are questions about the value of prolonged life in P’s condition. There are questions about how to improve P’s life, and about how much improvement is actually possible. Not all of these ques-tions directly implicate the phenomenal value present in P’s life, but some do. And that may be important for how we think about the value of a life such as P’s.
In this connection, the one point I wish to make regarding the case of P and T, and similar cases, involves how we think about the science of the traumatically injured brain. 1 In 2006 this science got an important jolt from a study published by Adrian Owen and colleagues ( Owen et al. 2006 ). They showed that a patient previously diagnosed as in a Vegetative State – that is, a state lower on the functionality hierarchy than MCS – was able to respond to commands to imagine walking around rooms of the patient’s house, and that this patient’s brain behaved similarly to the brains of healthy adults when they imagined walking around the rooms of their houses. This study brought into the light the possibility that diagnoses of Vegetative State and MCS may miss significant retained mental function, highlighting just how little we still know about the traumatically injured brain.
One very sensible response to this study and follow-up studies has been to think hard about our diagnostic criteria, and about how we might make them more accurate. Another sensible response has been the attempt to develop methods for communicating with traumatically injured patients. Of course, given the nature of the injuries, in many cases communication is dif-ficult, and in many more impossible. In a recent study utilizing behavioral measures and neuroimaging techniques, Osborne, Owen, and Fernández-Espejo (2015 ) report that only three out of sixty-eight patients were “able to successfully communicate accurate answers to yes/no questions in the scanner . . . while a fourth exhibited communication capabilities but failed to produce correct answers” (2).
An alternative response to the evidence of preserved functionality in those with traumatic brain injuries would be to study preserved evaluative capacities. Consider, for example, a recent study by Osborne and colleagues (2015 ). In one condition healthy participants were instructed to execute a movement or to imagine doing so. In another condition, they were allowed to voluntarily select the movement or the imagined movement. The volun-tary condition was associated with significantly higher activation in regions associated with top-down motor control: pre-supplementary motor area and middle frontal gyrus. Osborne and colleagues apply this study to the case
Moral status: human cases 103 of the brain injured, arguing that detection of similar patterns of activa-tion might serve as evidence that capacities enabling voluntary selecactiva-tion of activity are preserved.
What does this have to do with the retention of evaluative capacities?
The capacity for voluntary selection is decomposable into important sub-capacities, e.g., capacities to hold contents in working memory, to com-pare contents, and to initiate execution of a preferred action. This capacity in human adults seems to require evaluation of action options and asso-ciated consequences. As I have argued elsewhere, future research could extend this general strategy to examine evaluative capacities. One line of research that could help people such as T in our case would be research on responses to emotional stimuli. It turns out that researchers have provision-ally attempted to assess residual emotional function in some patients. But no systematic attempt to assess levels of emotional functioning has been conducted (see Perrin, Castro, Tillmann, and Luauté 2015 ). As a result, although it is known that patients with traumatic brain injuries retain some capacity for functional response to emotional and self-relevant stimuli, the level or complexity of their emotional lives is not well understood. But it could be better understood – the thing to do is simply to study brain injured patients emotional assessments of stimuli, and to compare their capacities with those of healthy adults. This kind of work is already being done with respect to communicative capacities. If, as I have argued, the evaluative sophistication of a person’s mental life is critical to the value present in that person’s experiences, then there is a strong moral motivation to pursue this kind of research.
Case two: intellectual disability
Millat and Irie are a young couple living in East Oxford, in a nice terraced house just off the Cowley Road. After their doctor delivers some happy news – they’re pregnant! – they find themselves inundated with NHS pam-phlets and a wealth of passive-aggressive blog pieces about pregnancy. One of the pamphlets is pressed upon them with particular urgency by more than one health care professional. They get the message that it is important to voluntarily decide to get screenings for Down’s, Edward’s, and Patau’s syndromes. Not wanting to be remiss, they do so. The screening for Down’s syndrome returns a verdict of high risk. Millat’s initial reaction is firm:
they should terminate the pregnancy. Irie is unsure, however, and further research leaves her in a state of better-educated uncertainty. She shows some of this research to Millat, and he enters a state of deep uncertainty, and deep anxiety as well. There seem to be so many factors to weigh. What is the risk that the child will have a severe intellectual disability? What kinds of potential health problems might be associated with Down’s syndrome?
104 Moral status and difficult cases
What kind of financial burdens will Millat and Irie face? Are they up to the anticipated emotional burden? Would they develop a creeping resentment at the child or at each other over the decision not to terminate? Would they develop resentment, guilt, or regret over a decision to terminate? What kind of quality of life would the child have? Additional worries are associated with the timing of the screening. By the time the test result comes back, the fetus is eighteen weeks into development. Although UK law allows for late-term abortions if the fetus has Down’s syndrome – this condition falls under
‘Ground E,’ which covers the risk of a child being born handicapped in some way – Irie is adamant that she will under no circumstances terminate the pregnancy if the fetus is older than twenty-four weeks. Although Millat rolls his eyes, Irie insists that beyond this point the fetus might become con-scious, and that is the line Irie draws. That gives them precious little time to sort everything out.
As I hope this case illustrates, the decision facing Millat and Irie is extremely difficult and complex. I am focusing on their decision, but we could say the same thing about the policy background and medical prac-tices that foreground their decision. There are a number of factors relevant to questions about how such screenings are presented and offered, about how we think about the decision to terminate a pregnancy, about the law surrounding late-term abortions and about exceptions made for conditions like Down’s syndrome. In Millat and Irie’s case, I have already discussed some of the relevant factors. The fetus’s potential quality of life is but one of these. But it is nonetheless a very important one. It is undoubtedly the case that for some pregnant individuals or couples, the quality of life – and the quality of experiences that are so central to quality of life – functions as a trump card. If they came to believe that the fetus would have a high quality of life, they would bring it into the world. If they came to believe that the fetus would not, they would not. Whether that is an appropriate approach to such a difficult decision, I am not sure. I think there is something to be said for considering the existence of the individual at the very heart of matters.
What, then, should we say about quality of life for those with Down’s syndrome? There is no one answer: the syndrome evinces a high degree of individual variability with respect to level of intellectual disability as well as susceptibility to physical and mental health challenges. In the main, Down’s syndrome is associated with ‘mild to severe’ intellectual disability, as well as developmental delays and increased risk for psychological con-ditions like depression and Alzheimer’s disease. Consider the association with intellectual disability and developmental delays. The latter represent a challenge, but it is not clear that on their own they represent a threat to quality of life. But one might worry about intellectual disability. In particu-lar, one might think that the risk of even moderate intellectual disability is sufficient to downgrade the quality of life of such (prospective) individuals.
Moral status: human cases 105 The account of phenomenal value I have offered, however, counsels oth-erwise. Certainly one’s level of intellectual ability interacts with one’s other abilities, and can contribute to the complexity and evaluative sophistication of one’s experiences. But I have argued that the differences here are mini-mal when considered from the right altitude. What is far more important are well-functioning evaluative capacities – a robust emotional life, access to sensory pleasures, absence of chronic pain, and enough understanding of the world to develop sophisticated cares. Although cases involving severe intellectual disability are more difficult to adjudicate, and may represent significant detriments in terms of the quality of one’s experiences, it seems to me that those with mild to moderate intellectual disability meet these conditions. In the case of individuals with Down’s syndrome, one might learn this by speaking to one, or by reading or watching the readily avail-able accounts of life with Down’s syndrome. Emerging research further bolsters this judgment.
For example, children with Down’s syndrome are not significantly differ-ent from other children at emotion recognition tasks ( Pochon and Declercq 2013 ), and show similar developmental trajectories with respect to the acquisition of emotion knowledge ( Channell, Conners, and Barth 2014 ).
And a recent survey of health-related quality of life revealed that although children with Down’s syndrome score lower than other children on mea-sures of motor skill and cognitive development, they score the same on measures of physical complaints and measures of positive and negative emotions, and they score better (at least in this one survey) on a measure of anxiety and depression ( van Gameren-Oosterom et al. 2011 ).
I do not think these kinds of results could or should determine one’s assessment of Down’s syndrome. But insofar as one’s view of the reasons Millat and Irie have to weigh gives a central place to the quality of life of an individual who has Down’s syndrome, I think it crucial to push past negative associations with and stereotypes of intellectual disability, and to consider the total conscious mental life of the individual in more detail.
In many cases – those involving mild or moderate intellectual disability and lower risks of extreme health problems – individuals with Down’s syn-drome seem to have regular access to experiences that are just as valuable as any within the human range. If societal attitudes were to come to reflect that, and to reflect the idea that this is a more important fact than any fact about raw cognitive ability, the lives of those with Down’s syndrome would likely improve even more.
Note
1 My reasoning here mirrors the reasoning deployed in Shepherd (2016a ).
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