Early Births Fade to Grey
The Australian, January 3, 2007
Australians have a reputation for being direct and open, and for refusing to shy away from calling a spade a spade. Now healthcare professionals and community representatives in NSW and the ACT have shown that they are willing to use the same direct approach in one of the most sensitive areas of medical decision-making: when to treat, or not treat, an extremely premature newborn.
That question has been with us ever since medical technology began pushing back the limits of viability from the traditional 28 weeks of gestation to something closer to 23 weeks today. It requires ethical reflection about when a human life is worth trying to save and what role the risk of serious disability should play in that decision.
In an article in last November's issue of The Medical Journal of Australia, Kei Lui, director of the department for newborn care at Sydney's Royal Hospital for Women, and colleagues at several other hospitals reported on the outcome of a workshop of 112 professionals from each of the 10 units offering the highest level of intensive care to newborns in NSW and the ACT. Significantly, the workshop was able to reach a consensus statement on some principles regarding medical decision-making for premature infants.
The workshop included not merely medical specialists in the relevant disciplines, such as obstetrics and intensive care for newborns, but also midwives, neonatal nurses and parent and community advocates. Before considering any proposals, the participants were given the results of a study of the outcome of births of babies at less than 26 weeks' gestation in NSW and the ACT between 1998 and 2000.
The study showed that no babies in this group survived without admission to a neontal intensive-care unit, and no babies born at less than 23 weeks survived. Between 23 and 25 weeks, the percentage surviving improved from 29 per cent to 65 per cent.
The survivors were followed up and examined when they were between two and three years old. Among those born at 23 weeks, two-thirds had some form of functional disability, and in one-third of all assessed survivors at this gestational age the disability was rated as severe. That meant either a severe developmental delay, or blindness, or that, because of cerebral palsy, the children were unable to walk even with the assistance of aids.
On the other hand, of those born at 25 weeks, only one-third had any form of functional disability and only 13 per cent had a severe disability.
Clearly, two additional weeks inside the mother's womb makes a huge difference to the child's chances of survival without disability.
In these circumstances, what should doctors - and society - do? Should we just draw a line, say at 24 weeks, and say that no child born prior to that cut-off should be treated? That policy would certainly avoid much agonising and save the community the considerable expense of medical treatment that is likely to prove futile, as well as the need to support severely disabled children who do survive.
But it would also be harsh on couples who may have had difficulty in conceiving and for whom the premature infant represents perhaps their last chance of having a child. If the parents understand the situation and are ready to welcome a severely disabled child into their family and give that child all the love and care they can, should a comparatively wealthy society like ours simply say, "No, your child was born on the wrong side of the cut-off line"?
Wisely, instead of trying to set a cut-off line, the workshop instead defined a grey zone within which treatment might or might not be given, depending on the wishes of the parents.
If the parents of an infant born at 23 weeks did not want their baby treated, every participant would accept that request, and there was consensus that, although the possibility of active treatment could be discussed, it would be discouraged in NSW and ACT hospitals.
Even at 25 weeks, 72 per cent of the participants would not initiate treatment if the parents did not want it, but by 26 weeks, the consensus was that the infant should be treated, except in unusual circumstances.
These consensus statements show that Australian doctors are among the leaders in openly acknowledging that limits to treatment are desirable.
In the US, for example, it is more difficult to challenge the prevailing rhetoric that every human life is of infinite value. Instead, parents are likelier to be told that treatment is futile and nothing can be done.
In fact, very often in these cases active treatment would prolong life, but with a high probability of severe disability. So something can be done, and to say that treatment is futile is to make the ethical judgment that life with such a high level of disability is either not worth living or not worth the effort required by the parents and the community to make it possible for the child to live.
One of the worst aspects of hiding such ethical judgments behind what appear to be medical statements about the futility of treatment is that parents are not given the chance to participate in the decision about their child.
That may relieve them of the heavy burden of responsibility, but it also denies them the opportunity to say whether or not they could love and welcome into their home a child with a severe disability. That is why the right course is the one taken by doctors in NSW and the ACT.
Sometimes, doctors should hold back their life-saving powers. In making life-and-death decisions for premature infants born in the grey zone between 23 and 26 weeks, parents' views about the minimum quality of life they consider acceptable for their child should play a significant role in the decision to offer, or continue, life-prolonging treatment.