borns do not have the same moral status as older children and ... of this special issue of the Journal of Paediatrics and Child Health, ... and Child Health © 2012 Paediatrics and Child Health Division (Royal Australasian College of Physicians).
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doi:10.1111/j.1440-1754.2012.02548.x
EDITORIAL
The neonate: a community’s moral compass?
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There is convincing evidence that, in many communities, newborns do not have the same moral status as older children and adults. North American ethicists assessed the relative moral value of preterm neonates by asking physicians and students of anthropology, bioethics, law and medicine to prioritise eight hypothetical patients who needed intubation and intensive care at the same time. The extremely preterm neonate came seventh, above the demented 80-year-old with a stroke, but after the 35-year-old with brain cancer who had a 5% chance of survival and 100% of handicap after surgery, chemo- and radiotherapy.1 Is this because there is a general ignorance as to the outcomes of neonatal intensive care? The chance of disability-free survival for extremely preterm infants continues to improve and neonatal intensive care compares favourably with adult intensive care regarding cost-effectiveness.2 Although the extremely premature neonate is an important part of neonatal care, there are many mature babies admitted to the neonatal intensive care unit with a very high survival rate and excellent outcomes. Even the way we refer to some babies, such as babies conceived after prolonged infertility, as ‘precious’ implicitly devalues other babies.1 Why do we undervalue newborns morally? Some argue that a newborn is not yet a ‘person’, a complicated construct that begs the question of when the baby becomes a person and what exactly constitutes becoming and ceasing to be a person. It is possible that because newborns have historically been very vulnerable, with mortality in the neonatal period higher than for any other age-bracket, our undervaluing of babies may be a cultural and possibly an evolutionary protective adaptation. The way the sick and dying neonate is viewed differs within communities and cultures. In Western countries, we agonise about the ethics of limitation and withdrawal of neonatal intensive care.3 North American ethicists argue that we subject neonatal intensive care to greater scrutiny and hold neonatal care to higher standards of justification than intensive care for older children and certainly for the elderly,1 even though neonatal intensive care has been shown to be cost-effective.2 In developing countries, in contrast, the problem is one of equity. Almost 99% of neonatal deaths occur in developing countries, mostly in homes in the community, not in hospital. In many low-income countries, newborns do not have access to even the most basic low-technology means of survival, such as basic resuscitation to prevent birth asphyxia,4 access to kangaroo care5 (see Fig. 1) and community access to health care.6 With this disparity in mortality rates, there is a different perspective on acceptance of death, but there is little literature on how families are best supported through this time in developed countries let alone in developing countries.7 Because a poor outcome is rare in developed countries, families struggle with accepting it and frequently seek someone to blame, while on the other hand staff involved in antenatal care rarely discuss adverse events, giving parents the false perception that interventions are unnecessary and nothing bad will ever happen.
Fig. 1
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Kangaroo care (photograph courtesy of Professor Heather Jeffery).
At the United Nations Millennium Summit in 2000, world leaders agreed on goals including reducing deaths of children under 5 years old by two-thirds. Ironically, as immunisation levels improve globally and the absolute numbers of deaths fall, the proportion of neonatal deaths has increased to over 40% of all under-5 deaths.8 In 2005, the United Nations, World Health Organization and partners formed the Partnership for Maternal, Newborn and Child Health to focus advocacy, fundraising and research to reduce neonatal deaths. The good news is that the estimated global annual total of deaths fell from 4.6 million in 1990 to 3.3 million in 2009, and the global neonatal mortality rate (NMR) by 28% from 33.2 to 23.9 deaths per 1000 live births. The challenging news is that in Africa, the NMR only dropped from 43.6 to 35.9, whereas in some areas neonatal mortality was halved. An important component of reducing neonatal mortality is accurate classification of neonatal deaths to identify underlying causes where interventions may be of benefit. Although many neonatal interventions derive in part from adult medicine, neonatology is now providing evidence for other areas of health care. From neonatal studies, the importance of oxygen toxicity is now being considered by adult cardiologists in adults after myocardial infarction where oxygen therapy used to be a mainstay treatment. Barker’s hypothesis has important implications for neonates and, therefore, ultimately for paediatricians and adult physicians. Paediatricians need to advocate for neonates, whose moral status is frequently and perplexingly under-valued given that the first weeks and months of life can have an enormous impact on their long term neurological and cardiovascular outcome. Many of the issues raised in this editorial are discussed and developed in the articles of this special issue of the Journal of Paediatrics and Child Health, edited by Alison Kent, and is a small attempt to redress the balance and increase knowledge and interest in neonatal care.
Journal of Paediatrics and Child Health 48 (2012) 715–716 © 2012 The Authors Journal of Paediatrics and Child Health © 2012 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
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The neonate: a community’s moral compass
D Isaacs and A Kent
References 1 Janvier A, Bauer KL, Lantos JD. Are newborns morally different from older children? Theor. Med. Bioeth. 2007; 28: 413–25. 2 Doyle LW, Victorian Infant Collaborative Study Group. Evaluation of neonatal intensive care for extremely low birth weight infants in Victoria over two decades: II. Efficiency. Pediatrics 2004; 113: 510–14. 3 Ahluwalia J, Lees C, Paris JJ. Decisions for life made in the perinatal period: who decides and on which standards? Arch. Dis. Child. Fetal Neonatal Ed. 2008; 93: F332–5. 4 Lawn JE, Bahl R, Bergstrom S et al. Setting research priorities to reduce almost one million deaths from birth asphyxia by 2015. PLoS Med. 2011; 8: e1000389. 5 Conde-Agudelo A, Belizán JM, Diaz-Rossello J. Kangaroo mother care to reduce morbidity and mortality in low birthweight infants. Cochrane Database Syst. Rev. 2011; 3: CD002771. DOI: 10.1002/ 14651858.CD002771.pub2. 6 Bhutta ZA, Soofi S, Cousens S et al. Improvement of perinatal and newborn care in rural Pakistan through community-based strategies: a cluster-randomised effectiveness trial. Lancet 2011; 377: 403–12.
7 Flenady V, Wilson T. Support for mothers, fathers and families after perinatal death. Cochrane Database Syst. Rev. 2008; 1: CD000452. DOI: 10.1002/14651858.CD000452.pub2. 8 Oestergaard MZ, Inoue M, Yoshida S et al. Neonatal mortality levels for 193 countries in 2009 with trends since 1990: a systematic analysis of progress, projections, and priorities. PLoS Med. 2011; 8: e1001080.
Professor David Isaacs1 and Associate Professor Alison Kent2 1 Editor-in-Chief Children’s Hospital at Westmead Sydney Australia 2 Consultant Neonatologist Canberra Hospital Canberra Australia
BRIEF COMMUNICATION
An introduction to the Australian NAIT Registry
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The Australian Neonatal Alloimmune Thrombocytopenia (NAIT) Registry has recently been established to provide a more comprehensive epidemiological picture of NAIT in Australia. The NAIT Registry is a collaborative effort between the Australian Red Cross Blood Service, the Department of Epidemiology and Preventive Medicine at Monash University and interested clinicians. It is a register of all pregnant women who develop or have a history of NAIT and their children, both before and after birth. Patient registration takes place primarily through the treating clinical team. Following institutional ethics committee approval, clinicians at participating hospitals may enter clinical data securely through an online database. It is anticipated that approximately 20–30 patients will be identified each year across all participating hospitals. To ensure that all eligible patients are captured, the clinical data in the registry will be cross-referenced with the four laboratories that perform diagnostic testing for NAIT across Australia. In addition, cases will be cross-referenced with the Blood Service, which provides specialist medical advice as well as blood products for affected patients. Due to the low frequency of NAIT, accruing sufficient patient numbers for studies and clinical trials at an institutional level is
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difficult. The Registry aims to provide an opportunity to more accurately define the incidence, natural history and clinical outcome of NAIT while exploring factors affecting clinical outcome and better defining optimal management of NAIT patients. The registry may also inform and inspire future hypothesis-driven research in this area. For more information or to contact the registry, go to http://www.torc.org.au/node/5 or Google ‘Australian Neonatal Alloimmune Thrombocytopenia (NAIT) Registry’. Dr David C Risson1,2 Dr Mark W Davies1,2 Dr Bronwyn A Williams3 1 Grantley Stable Neonatal Unit Royal Brisbane and Women’s Hospital 2 Department of Child Health University of Queensland, Brisbane 3 Haematology Department, Queensland Health Pathology and Scientific Services, Herston Queensland, Australia
Journal of Paediatrics and Child Health 48 (2012) 715–716 © 2012 The Authors Journal of Paediatrics and Child Health © 2012 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
