ArticlesEnd-of-life decisions in neonatal intensive care: physicians' self-reported practices in seven European countries
Introduction
In 1973, a controversial paper in the New England Journal of Medicine1 drew attention to a disturbing and unspoken feature of neonatal intensive care-the practice of withdrawing life-sustaining treatment from newborn infants deemed to have incurable disorders or a high probability of future severe disability. In reviewing 299 consecutive deaths that occurred in a special-care nursery in Yale, USA, Duff and Campbell found that 14% were related to end-of-life decisions jointly made by physicians and parents.
In contrast to expectation, subsequent developments in perinatal medicine have not overcome the problem of deciding, for selected individual patients, whether to start or continue intensive care. Instead, as the limits of viability have been pushed back, the focus of the debate has moved to involve progressively smaller and frailer babies.2
Many theoretical discussions have been published about criteria for decision-making and the role to be allotted to parents. Studies reporting empirical data on decisions to forego intensive care are, by contrast, few.3 Most have concerned the English-speaking countries4, 5, 6, 7, 8, 9 or the Netherlands, where the debate that led to non-prosecution of euthanasia for competent adults has been parallelled by similar reasoning about neonatal decision-making.10, 11 Data allowing comparison and contrast for different countries and cultures are particularly scarce.12 Therefore, ethical and legal discussions and formulations take place with scant knowledge of the actual behaviours they intend to guide.
To fill this gap a multicentre research project, EURONIC, has been carried out in a large representative sample of neonatal intensive-care units (NICUs) in several European countries. Key aims of the study were to document the practices as reported by physicians themselves and to explore the factors that influence them.
Section snippets
Sample
The goals and design of the project have been described in detail elsewhere.13
In Luxembourg, the Netherlands, and Sweden, the study organisers invited participation by all NICUs that met four predefined criteria (routine care of very-low-birthweight infants, with at least 20 admissions per year; availability of long-term mechanical ventilation; 24 h availability of a paediatrician or neonatologist [in Sweden a nurse neonatologist]; and no transfer of patients to other units for medical
Results
122 NICUs were recruited, with an overall response rate of 86% (table 1). In each unit, the questionnaires were distributed only to the staff agreeing to take part in the project. 1235 questionnaires from doctors were returned. The response rate, calculated as the number of completed questionnaires divided by the number distributed plus the number of staff refusing participation was 89% overall (table 1).
The main sociodemographic and professional characteristics of responding physicians in the
Discussion
Besides the substantive results of this study, it shows that rigorous survey methods can be used to investigate a very sensitive issue in the context of several countries and cultures. The sampling strategy adopted and the high response rates support the representativeness of the sample and the validity of results.
To our knowledge, few other studies have discussed data simultaneously collected in different countries.16, 17, 18 The previous studies used qualitative methods and convenience
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