376 From our own correspondents King2 has described the changing attitudes of neonatologists in the United

States. The Maximin approach described by Rhoden3 which involved subscribing to a philosophy of waiting until absolute certainty that continued treatment is futile, has given way to what has been called an ‘individualised prognostic strat- egy’ where treatment is necessarily and automatically begun, but periodically reevaluated as more information is amassed. This approach is called the dynamic approach by Malcontent. It is felt by most American neonatologists to be preferable to the alternative of a ’statistical prognostic strategy’ in which policy decisions (based upon outcome studies) are applied to groups of infants rather than individ- uals (for example policy decisions to not ventilate or resuscitate infants below a particular birthweight).

Both King and Rhoden have pointed out that the individualised prognostic strategy requires an increased acceptance of uncertainty on the part of physicians. In addition, as King points out, it requires a relationship with barents that she describes as ‘transparent’ using Brody’s term which he describes thus: ’essentially the transparency standard requires the physician to engage in the typical patient management thought process only to do it out loud in language understandable to the patient‘?

Malcontent in effect argues that the acceptance of uncertainty and the adoption of transparency should be extended to the situation before and immediately after delivery. This argument is somewhat similar to that of B ~ t k i n , ~ although the latter would restrict this degree of parental decision making to infants less than 500 g who are born in poor clinical condition. It is almost identical to the views expressed by the combined statement of the Canadian Pediatric Society and the Society of Obstetricians and Gynecologists of Canada: which recommends that resuscitation of infants of 23 and 24 completed weeks of gestation should be consistent with the parents’ wishes.

One justification for the dynamic approach is that uncertainty is considerably greater before birth than afterwards. Infants may be unexpectedly more mature or unexpectedly larger, and the dynamic approach gives such infants the benefit of the doubt. However, this problem is of decreasing importance with the widespread availability of ultrasound assessment. It does, however, remain true, particularly for some groups of mothers at very high risk of prematurity, especially the poor and ill-educated; such patients are more likely to receive little or no antenatal care, possess relatively poor health education and may have uncertain dates as a result of poor compliance in the use of oral contraception. True uncertainty about size and maturity, therefore, may be a real justification for the dynamic approach.

In addition, there is not always the opportunity to make decisions in advance. Very early labour or delivery occurs only in a very small proportion of mothers. It is usually unexpected, unwanted and tragic. Sudden crises such as this may generate a response of guilt, denial or anger, however skilled and available antenatal counselling may be. No parent is happy to make the decision to lose their infant

From our own correspondents 377

and not a few find themselves, through no fault of their own or their physician, unable to make such a decision. Therefore, when delivery is totally unexpected and rapid, or when parents feel unwilling to make an antenatal decision the dynamic approach may remain appropriate.

Malcontent gives a second quasi-justification for the dynamic approach which is that of the educational value of aggressive resuscitation. We have frankly never come across such a justification, either overtly or covertly, and find the phraseology of the resident quoted by Malcontent equally repugnant. The final justification for automatic resuscitation is the claim that inaction runs the risk of producing an increased degree of handicap in some infants who survive despite the absence of resuscitation. Lilienfeld proposed a continuum of reproductive casualty ranging from lethality (stillbirth and neonatal death) to cerebral palsy and epiIepsy in survivors; this was originally postulated as a conceptual framework for re~earch.~ Ounsted argued, on the basis of a study of outcomes of hypertensive pregnancies between 1970 and 1973, that there was, in fact, no continuum but an ’all-or-nothing’ phenomenon.8 However, at the time of this study premature infants in the UK frequently were not resuscitated and ventilators were used infrequently, if at all. Ounsted’s description of an alI-or-nothing phenomenon may well be correct for that period, and the outcome of those (largely term) pregnancies. Even though there is a poor correlation between cerebral palsy and perinatal events, the presence of a continuum of effects in premature infants which can be modified by intensive care, has not been disproved. Indeed, most recent reviews suggest a stable or even decreasing rate of major impairment in the face of increasing survival of the very premature infant: suggesting that aggressive and effective intensive care can shift the spectrum of morbidity to the less severe end. In addition, recent evidence suggests that in infants <2000 g there is a predictive relationship between ultra- sound evidence of perinatal brain injury and disabling cerebral palsy.1° Is the outcome of infants of 23-25 weeks an ‘all or nothing’ phenomenon? Withholding intensive care in these truly immature infants usually results in death. Occasion- ally, however, it does not - but the likelihood of such unexpected survival is unknown. In the absence of accurate information we are, indeed, left with a dilemma like those of the Pop0 tribe, but a dilemma which not only has no right answer, but also has no wrong answer either.

A further problem is that, although we have information on the impact on families of survival - wanted or unwanted - in an atmdsphere of a dynamic approach, we know very little about the impact on families of the death of an infant as a selected option - and even less about the impact of unexpected survival after such choices.

Why, therefore, should we press the point that parents should be given dis- cretion in determining resuscitation policy at very early gestation? Firstly, we can now usually be reasonably sure of size and gestation. Secondly and more import- ant, the outcome of interest for both parents and paediatricians is more than death.

a 19% Blackwell Science Ltd. Paediarric arid Pmritraral Epidetniolqyy, 9,370-380

378 From our own correspondents In order for very low birthweight infants to survive, they must undergo four or more months of NICU existence, some of which will be recognisably severely distressful. Indeed, in the case of the impaired survivors a very high proportion of this early existence may represent profound suffering. For some babies and parents we believe this is too high a price to pay. Such parents should be given the opportunity to make a transparently informed decision. Those parents who do not have such an opportunity or feel unwilling to make such a decision may be justifiably treated by the dynamic approach.

However, this leaves us with an issue which we find extremely troublesome and which is not addressed by Malcontent. At what point is it appropriate to stop giving parents this degree of discretion? Clearly society, as represented by the courts, requires parents to take responsibility for the well-being of their infant. This includes medical care and failure to provide it risks penalty as well as the loss of the child. Where is - and more important who determines - the boundary between parental autonomy and infant protection (beneficence)? ‘

We are helped in some respects by the original Baby Doe decision. This set a very clear boundary and in neither Canada nor the United States would the courts countenance withholding life saving surgery (and presumably intensive care) on the basis of future intellectual challenge alone. This, unfortunately, does not help us make decisions with the very low birthweight infant. Botkin5 has suggested that where there is credible professional opinion on both sides of the question of resuscitation or intensive care the parents should have the prerogative of choice. Further, he suggests that the spectrum of parental influences should be strongest when the chances of survival are least. In conversation with at least one extremely knowledgeable parent (Helen Hamson, personal communication) it was suggested that the 50-50 point, that is 50% survival, 50% death, represented an appropriate cut-off. However, this suggestion does not incorporate the distress and suffering of survivors, an issue which we have earlier argued to be important.

Clearly, we have not found an answer to this question. We believe that ap- proaches to the answers are not to be found through the courts nor through the beliefs and values of neonatoiogists or other health care professionals. Instead, the answer to policy questions, just as the answers to individual patient questions, should be sought from parents,” especially those who have undergone the experi- ence of an infant in the intensive care unit and even from the graduates of intensive care themselves.12

JOHN WATTS AND SAROJ SAIGAL

References 1 2 22: 18-25.

Malcontent. Fumes from the spleen. Pediatric and Perinntal Epidemiology 1995; 9:370-379. King NMP. Transparency in neonatal intensive care. Hustings Centre Report 1992;

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From our own correspondents 379 3 Rhoden N. Treating Baby Doe: The ethics of uncertainty. Hustings Centre Report 1986; 1634-42. 4 Brody H. Transparency: informed consent in primary care. Hustings Centre Report 1989; 195-9. 5 Botkin JR. Delivery room decisions for tiny infants: an ethical analysis. Journal of Clinical Ethics 1990; 1:306-311. 6 Fetus and Newborn Committee, Canadian Pediatric Society and MaternaEFetal Medi- cine Committee, Society of Obstetricians and Gynecologists of Canada. Management of the woman with threatened birth of an infant of extremely low gestational age. Canadian Medical Association Journal 1994; 151547-553. 7 Lilienfeld AM, Pasamanick B. The association of maternal and fetal factors with the development of cerebral palsy and epilepsy. American Journnl of Obstetrics and Gynecology 1955; 7093-101. 8 Ounsted M, Moar VA, Cockburn J, ef al. Factors associated with the intellectual ability of children born to women with high risk pregnancies. British Medical Journal 1984; 288:1038-1041. 9 Robertson CMT, Hrynchyshyn CJ, Etches PC, Pain KS. Population-based study of the incidence, complexity, and severity of neurologic disability among survivors weighing 500 through 1250 grams at birth A comparison of two birth controls. Pediatrics 1992; 90750-755. 10 Pinto-Martin JA, Riola S, Cuann A, et al. Cranial ultrasound prediction of disabling and non-disabling cerebral palsy at age two in a low birth-weight population. Pediatrics 1995;

11 Saigal S, Furlong WJ, Feeny DH, Rosenbaum PL. Parents’ perceptions of the health- related quality of life of teenage extremely low birthweight and control children. Pedintric Research, Abstract No 225,1995; 3740A 12 Saigal S, Feeny DH, Furlong WJ, Rosenbaum PL, Burrows EA. How premature teens perceive their own health-related quality of life: Comparison with controls. Pediatric Re- search, Abstract No 1610,1995; 37277A

95:249-254.

So what? Losing and Loss I hate losing. One of my earliest memories is playing cards for pennies with my grandfather, and always winning the last game when he would add a silver coin to the pennies we were playing with. It was a long time before I realised he had played to lose. When my children were young1 wanted to be like my grandfather but it was very hard as I loved winning and hated losing, even if the game was snap and my opponent very small. I had to force myself to lose. I loved my children. I wanted to please them. But I wanted to win.

As one matures, the losses are more substantial than games of cards. I write this near the beginning of 1995, a year that has begun badly for me and

mine. Soon after Christmas, I got the flu. I fought it for a day or two. A theatre outing I could not bear to miss. Staff interviews I did not want to miss. But then I was forced to give in and spent 2 weeks at home. Oh the disgrace of it. I could not remember the last time I took a day off work due to sickness, let alone 2 weeks. Intellectually, I know that being ill is something over which one has no control. In reality, I think giving in to illness is a sign of moral weakness.

0 1995 Blackwrll Science Ltd. Paediarric atid Pennatal Epidrmiolqyy, 9,370-380