Medical groups in Britain are calling for a debate about the treatment and care of very premature babies, especially those born before 25 weeks. Most of these babies currently do not survive to leave hospital, and survival before 22 weeks is very rare. However, the number born at these very low gestations is increasing. This raises difficult issues: pain for the babies if they are treated; futility of treatment when death is likely anyway; emotional suffering for the parents; possible court cases; and costs to the health system.
The Royal College of Obstetricians and Gynaecologists suggests that infant euthanasia should be legalised. The Nuffield Council on Bioethics opposes active euthanasia but proposes: a) all babies born before 22 weeks should be given palliative care only — that is, they should be allowed to die; b) babies born between 22 and 23 week should only be given intensive care if the parents request it after thorough discussion of the risks and if the doctors agree; c) for babies born between 24 and 25 weeks parents should have the final say about intensive care. The British Medical Association, however, opposes any rule tied to the number of weeks gestation, saying every case must be judged on its merits.
To get another ethical perspective MercatorNet asked Italian neonatologist Dr Carlo Bellieni, who has a special interest in infantile pain, for his views on the treatment of these babies.
MercatorNet: It must be very difficult to decide whether or not to treat very premature babies. What principles do you use? Do you think it is a good idea to set down a rule that all babies born before, say, 22 weeks should be allowed to die?
Carlo Bellieni: It is not difficult: we resuscitate babies on the basis of their actual possibility of surviving. It becomes difficult if you decide to resuscitate only those who will not have severe brain damage. But is that ethical? At birth you cannot be sure of the prognosis. So you finish up resuscitating only “normal” babies and only on the basis of an hypothesis.
Last month we organised a congress in Bologna, Italy, with more than 500 neonatologists and neonatal nurses. The title was, Deciding in Neonatology. From this congress it emerged that we cannot make decisions about a very premature baby without seeing him/her — without assessing, through a rapid but accurate investigation, his/her actual gestational age (GA) and his/her response to resuscitation. We know that before 23 weeks GA the possibilities of surviving are few, but errors can be present in assessing age before birth.
MercatorNet: What light does your research on infantile pain throw on the case of a very premature baby needing resuscitation and intensive care for a chance of survival?
Dr Bellieni: My research shows that even in premature babies pain should be considered and overcome. Moreover, we know that premature babies are social beings and they need to be soothed and cared for; they need the presence of parents. We studied a type of nonpharmacological pain relief based on distraction and reassurance of these babies and it is absolutely effective. We treat them as what they are: persons. Anyway, we have such effective analgesic drugs and treatments that believing that pain is a reason to let babies die is anachronistic.
MercatorNet: The issue of pain in premature babies — which is recognised by the Nuffield Council — raises the question of pain in babies whose lives are terminated, especially in Britain where the law allows induced abortion at any time during pregnancy if a fetus is at "substantial risk of serious handicap". Some scientists deny that the fetus feels pain; would they also have to deny the need for palliative care for a baby born alive at 22 weeks?
Dr Bellieni: In order to deny fetal pain, some philosophers say pain is impossible without self-awareness, and as awareness begins when the baby is one year old, they affirm that infants do not actually feel pain! But physiological and embryological studies show that there is no evidence to deny fetal pain, at least from 20 weeks of GA.
Sunny Anand, the pioneer of neonatal pain, devoted to this problem an issue of the official journal of the International Association for the Study of Pain in June 2006, to reaffirm that pain perception begins in the second trimester of gestation. Anyway prejudice and resistance against the recognition of fetal and neonatal pain are still present and they are big foes to effective treatment.
MercatorNet: Are there circumstances in which you would recommend palliative care only? Should the possibility of long-term disability be considered when deciding whether to treat a newborn?
Dr Bellieni: I recommend palliative care when all therapies are useless and the baby is dying. But, pay attention: someone may say that a therapy is futile and should be avoided if its result is the survival of a handicapped baby. This is why some call the period between 23 and 25 weeks of GA a “grey zone”. Babies born in this period have a significant rate of survival, but also a significant rate of handicap. I believe that a disabled life is worth living: most families of disabled persons agree. But our fear of disability, which I call handiphobia, dictates that “death is better than a life with handicap”. This attitude accepts the sacrifice of all babies born before a certain GA because they have a high risk of handicap. The Bologna congress declared that this is unacceptable.
A recent Swedish study published in the US journal Pediatrics shows that in hospitals where a selective resuscitation of babies aged 23-25 weeks of GA is performed, there is a higher rate of handicap among the survivors, when compared with those hospitals where all babies of the same GA receive intensive care. This is also due to the fact that we have no sure prognostic tool at birth. So, we have moral reasons to not abandon extremely premature babies, but the evident absence of a reliable instrument to make a sure prognosis means that such abandonment is wrong even from the clinical point of view: all premature babies who can have a chance to survive — that is, who have a lung development which permits the resuscitation — should be cared for.
MercatorNet: Who should have the final say in a particular case — the doctors? parents? courts?
Dr Bellieni: Parents are in a very difficult position. Doctors spend years to learn what cerebral palsy is, and we assume parents can learn it in few minutes; we urge them to decide while we ignore the prognosis; we want them to be rational when they are stressed and weary: it is absurd. Resuscitation must be decided on the basis of objective data which only physicians can correctly analyse. Parents must anyway be informed step by step about the evolution of the clinical state of the baby, but they cannot have the last word. If a baby is dying we can do nothing except give him/her comfort. If a baby is not dying, but we have a high risk of disability, what should we decide? There is nothing to decide: we must care and cure — unless we believe that disabled lives should disappear, through eugenic selection.
MercatorNet: Should cost to the health system be a factor in deciding on the fate of babies born under 25 weeks?
Dr Bellieni: A 25 week old baby is costly, though less expensive than a few years ago: “Between 1994 and 1996, the median treatment cost per infant with birth weight 501 to 1500 g at the 6 project NICUs … decreased from $57 606 to $46 674; at the 4 chronic lung disease hospitals, for infants with birth weights 501 to 1000 g, it decreased from $85 959 to $77 250.”
However, a 2003 study found neonatal hospital costs averaged US$202,700 for a delivery at 25 weeks, and US$224,400 for a newborn at 500-700 g. And there is also the cost of caring for a disabled person throughout his/her life. Will this be ignored when politicians decide about the right to life of these babies?
I hope that economics will never be the starting point for deciding on neonatal resuscitation. Nor should it be, any more than when we decide on a strategy against AIDS or leukaemia. Human life cannot be measured with money.
MercatorNet: Is it true that the number of these births is increasing, and if so, what’s behind this trend? Does IVF have much to do with it?
Dr Bellieni: Prematurity is increasing, and the risk of being born prematurely is greater with IVF. The trend towards later childbearing also plays its part. Women are led to believe they can bear a child whenever they decide to, but this is not correct. Of course, most babies conceived in-vitro are well and healthy, but the percentage of them with some health problems is greater than among the general population. All scientific literature agrees with this warning.
Dr Carlo V. Bellieni is a neonatologist, professor of neonatal therapy at the Pediatrics school of the University of Siena, Italy. He is member of the scientific board of the European Pain School. He has written several books about the fetus as a person, which have been translated into Spanish and French. His research on infantile pain has been reported by The Times (UK), El Mundo (Spain), CNN, ABC, and many other media.