The magnitude of benefit
What if there were no difference in the costs of treatment, nor in the probability of survival, nor in the duration of benefit? Should the child’s future quality of life be considered? Would the fact that the infant will be disabled, be directly relevant to rationing decisions?Footnote 7
The example of SMA type 1 is highly relevant here. We might compare it with another condition that leads to long-term dependence on mechanical ventilation (Box 2).
Again, if we think about an individual patient, doctors make decisions all the time, choosing between treatments on the basis of quality of life. For example, imagine that a doctor has to choose between two life-saving treatments I and J for a single infant, Betty, perhaps different surgical techniques. The treatments cost the same amount. They have the same chance of saving Betty, and she will live for the same amount of time. However, if the doctor uses surgical technique J, Betty will live to adulthood but be affected by cerebral palsy and cognitive impairment. If the doctor uses technique I, she will live to adulthood with no impairment. In this choice, it is clear that the doctor should provide treatment I. It seems uncontroversial that at least this sort of quality of life assessment is justified.
What about a situation where there are different patients, Ingmar and Julian, requiring treatment? Prima facie, it appears that the same considerations would apply. Drawing on the same line of argument as used above for costs, probability and duration of benefit, it appears that quality of life could be a reason to choose to treat Ingmar rather than Julian, in a situation where only one patient could be treated. It could be justified, therefore, to selectively provide treatment to a non-disabled over a disabled infant (Savulescu 2001).
Again, this would appear to hold for large differences in quality. Where there are small differences, as before, it seems unjust to make too discriminating judgements. Imagine Ingmar has a sunny temperament and Julian is flat, more melancholic. It would be wrong to give priority to Ingmar, even if we believed it was better to be happy than sad. Whether disabilities like blindness and deafness should be treated as melancholia or severe physical and cognitive impairment is a difficult question to which we will return. For the present, it seems reasonable to take into account significant impairments in quality of life prognosis in allocation of life saving treatment.
The one-to-many analogy
The above represents an argument from analogy. More formally we could set it out as follows:
Two life saving treatments T1 and T2 differ in characteristic X to a degree Y.
Two patients P1 and P2 if provided with life-saving treatment differ in characteristic X to degree Y.
If a doctor were treating a single patient, differences in characteristic X to degree Y would provide a moral reason to provide treatment T1 rather than T2.
If characteristic X (to degree Y) is relevant for individual patients, it is also relevant for decisions about multiple patients.
Difference in characteristic X (to degree Y) provides a moral reason to provide treatment to P1 rather than P2.
Some may reject the one-to-many analogy. For example, John Harris apparently rejects the fourth premise on the grounds of patient preferences (Harris 1987, 1996). A single patient may have a strong preference for survival without impairment, and consequently for T1 over T2. Yet our two different patients P1 and P2 may have, indeed are likely to have, equally strong preferences for life over death. If we are providing life-saving treatment in order to respect patient interests, and a patient’s interest in LST is based on their preference for that treatment, it appears that the one-to-many analogy would fail (Harris 1987; Sinclair 2012).
However, as noted above, Harris’ argument would also reject the one-to-many analogy where characteristic X is the cost of treatment, or the probability of survival, or the duration of survival. On Harris’ account, a patient with very low (<1 % say) chance of survival, predicted to survive for only a period of days, and only at vast expense should have an equal chance to receive a LST as a patient who has a 100 % chance of survival for many years if provided with an inexpensive LST. Moreover, when we are talking about newborn infants, our basis for choosing T1 over T2 cannot be based on their preferences. They do not have a preference for either treatment.Footnote 8 If premise three holds in the case of newborn infants, it does so because characteristic X represents a morally salient reason to prefer state T1 over T2. We might refer to rational preferences, and to what an infant would have reason to prefer. Or we could refer to objective constituents of wellbeing. Although there remains considerable philosophical disagreement about theories of wellbeing, it appears likely that any reasonable individual would choose treatment that offered longer survival over shorter survival,Footnote 9 a higher chance of survival over a lower chance of survival, or unimpaired survival over significantly impaired survival. High level of agreement with premise three provides us with evidence about patient preferences. However, it also supports the view that in general life is of benefit, and that in general impairment reduces wellbeing. Accordingly, the one-to-many analogy gives doctors or policy makers or triage officers a guide as to the types of benefit that they should consider when using limited medical resources. Medical treatment should be distributed to secure across a population as many as possible of the benefits that individuals would choose for themselves.
Quality of life and a life worth living
Some people would object to a policy that treated patient I rather than patient J because patients who have cerebral palsy have lives that are worth living. They might be concerned that a decision not to treat patient J is because of a mistaken belief that life in a wheelchair or life with cerebral palsy is worse than nothing. However, as we saw when doctors are making decisions for an individual patient, the reason to choose treatment I over treatment J does not involve an assessment of whether life in a wheelchair is worth living. It is based on an assessment of whether life with full ability to walk is in general better for the individual than not being able to walk. Indeed, for the purposes of this paper we are confining ourselves to situations where treatment would probably be in the child’s best interests. The question is whether disability would justify rationing beneficial and desired treatment.
Alternatively, critics may argue that states of disability are not as bad as they are commonly believed to be by individuals who are not disabled. They might point to the large body of sociological literature supporting the ‘disability paradox’ (Albrecht and Devlieger 1999). When individuals with significant disabilities are surveyed about their level of happiness, their responses are often far more positive than others expect. For example, children with cerebral palsy report general levels of satisfaction that are similar to children without cerebral palsy (Dickinson et al. 2007). Even patients with the most severe form of physical disability, locked-in-syndrome, report generally being happy (Bruno et al. 2011). We agree that views about disability are often unduly negative, and that states of disability may not be as bad as they appear to the non-disabled. However, none of this would change the fundamental reason for rationing and the one-to-many argument. Even if life with cerebral palsy is not as bad as feared, a doctor would have strong reasons to choose treatment I over treatment J.Footnote 10
Some people might argue that the reason that life with cerebral palsy is not as good as life with a full ability to walk is because of the way that our society is arranged (Amundson and Tresky 2007). For example, if people were fully accepting of people with disability, if there were more lifts, better designed cars, and public transport, adequate support in the community etc. that there would be no disadvantage in being in a wheelchair. It is clear that all of those things would be helpful for people with disabilities. It would be good to provide them. However, those arguments do not mean that in the individual patient case we should choose treatment J over treatment I. Even if our society were fully committed to reducing disadvantage to disabled people, it may take some time for those interventions to take effect. Moreover, even if all of those steps to reduce disadvantage had been taken there would still likely be reasons for the patient to prefer to survive not in a wheelchair, to prefer treatment I, in the way the world is likely to be. In addition, there are some disabilities that would lead to some disadvantage even in a perfectly just, accommodating, supportive society. For example, consider a child with SMA type 1; no amount of change to society is going to make survival with SMA type 1 as beneficial for the individual as survival with completely normal function.
Quality of life and moral worth
One concern about the use of quality of life (and perhaps duration of benefit) in rationing is that such decisions represent a devaluation of those with disability. Even if there is no question whether such lives are worth living, the implication of our argument could seem to be that certain states of disability are less worth saving. Dan Brock writes:
We should avoid giving weight in [prioritizing life-sustaining treatment] to the effects of disabilities on the patient’s quality or length of life because that would imply that these effects and the disabilities that cause them reduce the value of the treatments and the lives they sustain… [t]his would conflict with the equal moral worth of persons…(Brock 2005: 98).
There are several responses to this concern. First, it appears clear in the case of treatments I versus J for Betty, that reduced quality of life would reduce the value of treatment J for Betty. But that does not imply that Betty’s life would be less valuable if she had received this treatment. The aim of healthcare and distributive justice as we have described it, is not to maximise social value; it does not represent an attempt to save the lives of those with the greatest potential to contribute to society, financially or otherwise. Rather, the aim of providing healthcare is in order to increase patients’ wellbeing. If we are forced to provide life-saving treatment only to some of the patients who we could save, we should choose more valuable over less valuable treatments, but not more valuable over less valuable lives. When we provide LST preferentially to patients who are less likely to survive, or whose treatment would be less expensive, that does not mean that those who would survive for a shorter period, or who would require expensive LST have any less moral worth. We would save both groups of patients if we could.
The relationship between disability and chance/duration of benefit or cost of treatment is contingent. In some circumstances disabled patients may receive lower priority for treatment on the basis of these factors, while in other circumstances they will not. However, if quality of life is incorporated into rationing, disability may be directly relevant to resource allocation. Then, even if we are correct to emphasise that rationing decisions would be based on the value of treatment, not the value of lives, those who are disabled may feel devalued because they are likely to receive a lower priority for treatment.
There are two related questions. The first question is this: when we are allocating scarce resources, how much weight should be given to equality, compared with the benefit of treatment? One reason why the answer about treatment for an individual patient may be different from the answer that we give when deciding between multiple patients, is that there is a competing moral consideration.Footnote 11 If we give substantial weight to equal treatment of persons, we should toss a coin to decide between treating a newborn predicted to survive a week or month, or one who could survive for a normal lifespan. More plausible, perhaps, is a view we should give some weight to equality, but that this must be balanced against benefit. We should usually treat patients equally where there are only modest differences between them in their predicted duration of survival or future quality of life.Footnote 12 However, where there are large differences in benefit this will outweigh equality. If we had to choose between providing long term ventilation for a newborn with CCHS, compared with one with severe SMA, we should choose the infant with CCHS.
The second question is how much weight we should give to the social context in which allocation occurs and the way in which society understands allocation. We have argued that giving preference to treatments that are likely to secure a greater benefit does not necessarily devalue those individuals who are denied treatment. Yet, if there is a widespread misperception in society that disabled individuals have lives that are not worth living, or are less valuable,Footnote 13 and if resource allocation would reinforce that perception, we should potentially take this into account. We will return to this possibility shortly.
Probability of harm and quality of life
For this section we have stipulated that the probability of survival is the same between different treatments that we could provide. Yet, probability might be relevant to quality of life in a different way. We noted earlier that we are referring to conditions where LST would probably be in a child’s best interests. But when we are talking about individuals with very severe disabilities, such as SMA type 1, there are likely to be different views about whether or not the benefits of life-sustaining treatment outweigh the burdens (see Box 1). Some people may believe that in fact it would be a harm to these individuals to use intensive medical treatment to prolong their lives (Gray et al. 2013; Isaacs and Kilham 2013). It is very difficult to be sure. For conditions where the individual is unable to communicate we can never know exactly what life is like from their point of view. Although our view is that treatment for a child with SMA type 1 or other similarly severe conditions would probably be in their interests (Wilkinson and Gillam 2013; Savulescu 2013), it does seem possible that life-saving treatment will overall be a burden to them. That could be, for example, because of extra medical problems that arise. It might be because of the burden of extra unpleasant and invasive medical treatments. It might be because in the absence of an ability to communicate, caregivers underestimate how much the child is suffering. If that is right, that there is a chance that patients who are severely disabled will not benefit (and will be harmed) by providing life saving medical treatment, then we are back to talking about the probability of benefit. We already decided that it would be reasonable to prefer a 90 % chance of benefit (saving life) for C over a 9 % chance for D. On the same basis, it would be reasonable to treat a patient with CCHS rather than a child with SMA type 1 because the former has a higher chance of net benefit.
There are two extra things to say about this ‘chance of benefit/harm’ argument. First, it is unlikely that doctors or policy makers will be able to confidently put a number on the probability of benefit. But we do not need to do that to be able to compare the chances for infants with SMA and CCHS. We do not know the exact numbers, but we do know that the chances are very different for them—sufficiently different that it would be justified to treat a child with CCHS rather than one with SMA if forced to choose. Second, this chance of benefit argument applies only to cases of very severe disability. If we were considering LST for an infant with Trisomy 21 (Down syndrome), there would be very little chance that his life, after intensive care, would be not worth living. Similarly, for blindness, deafness, diplegia, mild or moderate physical or intellectual disability; these disabilities, though significant, are not so severe that it is at all likely that the burdens would outweigh the benefits in their lives. Correspondingly, the chance of harm argument would not apply.