There has been a lot of discussion about health care rationing in the North American media over the last year, much of it hysterical and barely coherent. A number of respected ethicists have tried to make the case for rationing, including Peter Singer in the New York Times last year, and recently John Freeman.
This week Newsweek Science Editor Sharon Begley asked ‘What is a Life Worth?’ drawing on a recent study presented at the American Society for Maternal-Fetal Medicine meeting. Begley noted
“This is the kind of news that unleashes hysteria about "death panels" and "health-care rationing," but here goes: an analysis of genetic screening for an incurable, untreatable disease called spinal muscular atrophy shows that it would cost $4.7 million to catch and avert one case, compared with $260,000 to provide lifetime care for a child born with it. So here's the question: do we say, "Damn the cost; it is worth any price to spare a single child the misery of being unable to crawl, walk, swallow, or move his head and neck"—or do we, as a society, put on the green eyeshades and say, "No, sorry, we can't afford routine screening"?”
Begley uses the spinal muscular atrophy (SMA) case to highlight the difficult questions involved in rationing, when emotions inevitably collide with economics. But it is worthwhile pointing out a particular problem with thinking about cost effectiveness and pre-natal screening. Prenatal screening (at a cost of $4.7 million) would spare one child the suffering involved in severe SMA, assuming that after diagnosis parents terminate the pregnancy. But it would also ‘spare’ that child any benefit from life. Whether, from that child’s point of view it is a good thing for there to be prenatal screening depends on whether the positives in their life would outweigh the negatives, whether, in fact, their life would be worth living.
SMA in its most severe form causes profound muscle weakness. Affected infants are usually dependent on breathing machines from birth or soon after. With time weakness often gets worse, and they may be left in a form of locked-in-syndrome, unable to move, open their eyes, unable to communicate (even by facial expression) whether they are happy or sad, uncomfortable or in pain. And such infants often have ongoing need for intrusive and painful medical interventions such as blood sampling and tracheal suctioning.
In the face of such a state many may well be tempted to think that the negatives in the life of an infant with severe SMA outweigh the positives. But if that is the case, then the real question is why $260,000 is sometimes spent to provide life-time care for infants with SMA? In the past infants with severe SMA would have been allowed to die in the newborn period.
There is an interesting bind here – if infants with severe SMA have lives that are worth living, then the reason to provide pre-natal screening is not to spare infants from suffering. If they do not have lives worth living, then why do we allow parents to request or insist that infants be treated?
The answer to this question for SMA is not clear. But for other conditions – cystic fibrosis, down syndrome, thalassemia, it is unquestionably the case that prenatal testing prevents the existence (or ends the life) of individuals who would have had lives worth living. Such testing may still be justified, but if it is, it is not for the sake of the infants, children or adults who would have suffered such illnesses.
An interesting argument, that could go a lot further :
Looking behind the maths that calculate the costs, it is clear that the $4.7m per case of SMA detected is based on the cost of screening every pregnant woman, not just those with a high risk. The question thus becomes generalisable to the whole gamut of screening programmes that medicine is increasingly capable of delivering.
If we screen everybody for everything that is detectable, currently or in the future, costs will clearly be huge.
This, I suspect, may in in itself be sufficient argument for the justification, if not of some form of rationing, but at least the establishment of equitable criteria for the use of such tests and the apportionment of the necessary but scarce ressources that they absorb.
Worth is a concept, like superiority, which is empty without a point. Superior with respect to what? Worth to whom, with respect to what? A child’s life is “worth” a great deal to a community that puts a high value on human life as such. Indeed, a liberal state, valuing individual liberty and property has to put a high value on life because the point of liberty and property is ultimately the human being. As the “value” of the human being recedes, so does the importance of rights with respect to the will of the community as interpreted by its representatives (volontė général) and so, therefore do the value of liberty and property.
Of course, we might be talking about the worth of life to the human being, which should be a matter left to that human being, unless the human is incompetent. Western law has the concept of personal guardianship in which the parent or other personal guardian decides what is in the best interests of the ward. I am frightened of such an approach to worthiness of life, but I suppose there is no other way to handle this problem, and only hope that the “problem” is so narrowly defined as to come up once in a blue moon, at most.
I suppose the latter kind of calculation is performed by those charged with determining who gets an organ transplant. I expect it will also be made by those who determine (the guardian? a judge? some health administrator?) whether the cost of end-of-life treatment is “worth it” with respect to the remaining life which, to the conscious living patient is infinite in market terms (high demand, low supply).
It is an interesting question: for whom is prenatal testing performed?
In my view it is for several people. Many couples believe that life is tough enough; they do not wish to knowingly bring a child into the world for whom it is even tougher (even if that child might have perceived that he or she had a life worth living). For some couples this reasoning might apply to abortion for what might be considered a ‘minor’ abnormality, such as a facial cleft. The potential for other associated undiagnosed abnormalities also weighs heavily on many.
For some it might also be about opportunity cost: if we have this child we will not have the physical or financial resources to invest in our other existing or future children. ‘Selfish’ motives can also be important – are we prepared to commit much of our lives to this child?
Although the community has no say in who chooses to have, and act on, prenatal testing, abortion can have cost benefits to community. In this respect, testing and abortion of abnormalities can be consistent with community interests. It is unlikely that governments would fund prenatal testing programs if there was no cost benefit.
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