End-of-Life After Birth: Death and Dying in a Neonatal Intensive Care Unit

Department of Pediatrics, University of Chicago, Chicago, Illinois, United States
PEDIATRICS (Impact Factor: 5.47). 01/2005; 114(6):1620-6. DOI: 10.1542/peds.2004-0447
Source: PubMed


In canonical modern bioethics, withholding and withdrawing medical interventions for dying patients are considered morally equivalent. However, electing not to administer cardiopulmonary resuscitation (CPR) struck us as easily distinguishable from withdrawing mechanical ventilation. Moreover, withdrawing mechanical ventilation from a moribund infant "feels" different from withdrawing mechanical ventilation from a hemodynamically stable child with a severe neurologic insult. Most previous descriptions of withdrawing and withholding intervention in the neonatal intensive care unit (NICU) have blurred many of these distinctions. We hypothesized that clarifying them would more accurately portray the process of end-of-life decision-making in the NICU.
We reviewed the charts of all newborn infants who had birth weight >400 g and died in our hospital in 1988, 1993, and 1998 and extracted potential ethical issues (resuscitation, withdrawal, withholding, CPR, do-not-resuscitate orders, neurologic prognosis, ethics consult) surrounding each infant's death.
Using traditional definitions, roughly half of all deaths in our NICU in 1993 and 1998 were associated with "withholding or withdrawing." In addition, by 1998, >40% of our NICU deaths could be labeled "active withdrawal," reflecting the extubation of infants regardless of their physiologic instability. This practice is growing over time. However, 2 important conclusions arise from our more richly elaborated descriptions of death in the NICU. First, when CPR was withheld, it most commonly occurred in the context of moribund infants who were already receiving ventilation and dopamine. Physiologically stable infants who were removed from mechanical ventilation for quality-of-life reasons accounted for only 3% of NICU deaths in 1988, 16% of NICU deaths in 1993, and 13% of NICU deaths in 1998. Moreover, virtually none of these active withdrawals took place in premature infants. Second, by 1998 infants, who died without CPR almost always had mechanical ventilation withdrawn. Finally, the median and average day of death for 100 nonsurvivors who received full intervention did not differ significantly from the 78 nonsurvivors for whom intervention was withheld.
In our unit, a greater and greater percentage of doomed infants die without ever receiving chest compressions or epinephrine boluses. Rather, we have adopted a nuanced approach to withdrawing/withholding NICU intervention, providing what we hope is a humane approach to end-of-life decisions for doomed NICU infants. We suggest that ethical descriptions that reflect these nuances, distinguishing between withholding and withdrawing interventions from physiologically moribund infants or physiologically stable infants with morbid neurologic prognoses, provide a more accurate reflection of the circumstances of dying in the NICU.

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    • "A recent study from Kansas reported 61.6% NICU deaths due to care withdrawn and another 20.8% deaths due to care withheld.[24] A similar trend has been reported from other NICU's from USA,[2526] Norway,[27] and Australia.[28] Some babies are notified as very sick and not for resuscitation by the clinician attending the labor and delivery room. "
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    ABSTRACT: To prospectively ascertain Qatar's national Neonatal Mortality Rate (NMR), Early Neonatal Mortality Rate (ENMR), and Late Neonatal Mortality Rate (LNMR) during 2011, compare it with recent data from high-income countries, and analyze trends in Qatar's NMR's between 1975 and 2011 using historic data. A National prospective cohort-study. National data on live births and neonatal mortality was collected from all public and private maternity facilities in Qatar (1(st) January-December 31(st) 2011) and compared with historical neonatal mortality data (1975-2010) ascertained from the database of maternity and neonatal units of Women's Hospital and annual reports of Hamad Medical Corporation. For inter country comparison, country data of 2009 was extracted from World Health Statistics 2011 (WHO) and the European Perinatal Health report (2008). A total of 20583 live births were recorded during the study period. Qatar's national NMR during 2011 was 4.95, ENMR 2.7, LNMR 2.2, and cNMR 3.33. Between 1975 and 2011, Qatar's population increased by 10-fold, number of deliveries by 7.2 folds while relative risk of NMR decreased by 87% (RR 0.13, 95% CI 0.10-0.18, P<0.001), ENMR by 91% (RR 0.09, 95% CI 0.06-0.12, P<0.001) and LNMR by 58% (RR 0.42, 95% CI 0.23-0.74, P=0.002). The comparable ranges of neonatal mortality rates from selected high-income West European countries are: NMR: 2-5.7, ENMR 1.5-3.8, and LNMR 0.5-1.9. The neonatal survival in the State of Qatar has significantly improved between 1975 and 2011. The improvement has been more marked in ENMR than LNMR. Qatar's current neonatal mortality rates are comparable to most high-income West European countries. An in-depth research to assess the correlates and determinants of neonatal mortality in Qatar is indicated.
    10/2012; 1(4):195-201. DOI:10.4103/2249-4847.105990
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    • "Withdrawal of life support is a frequent occurrence in newborn intensive care. In many units the majority of deaths follow decisions to withhold or withdraw treatment (Roy et al. 2004; Singh et al. 2004; Verhagen et al. 2009a; Wilkinson et al. 2006). There are two different contexts for decisions. "
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    ABSTRACT: When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of well-being. I present four arguments in favor of the Threshold View, and identify and respond to several counter-arguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view.
    The American Journal of Bioethics 02/2011; 11(2):20-32. DOI:10.1080/15265161.2010.540060 · 5.29 Impact Factor
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    • "Administration of drugs with the intent of hastening the end of an infant's life was, however, reported only by Dutch (47 per cent) and French (73 per cent) physicians. (See also Barton and Hodgman 2005; Devictor et al. 2001; Hentschel et al. 2006; Singh et al. 2004; Verhagen et al. 2007; Wall and Partridge 1997.) De Leeuw et al. (2000) presented more than 3400 nurses and more than 1400 physicians from 11 European countries with a vignette describing the case of a 24 week gestational age infant with a birth weight of 560g and an Apgar score of 1 at 1 minute. "
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    ABSTRACT: Euthanasia is performed on occasion, even on newborns, but is highly controversial, and it is prohibited by law and condemned by medical ethics in most countries. To characterise and compare the judgments of lay persons, nurses, and physicians of the acceptability of actively ending the life of a damaged newborn. Convenience samples of 237 lay persons, 214 nurses, and 76 physicians in the south of France rated the acceptability on a scale of 0-10 of giving a lethal injection in 54 scenarios composed of all combinations of 4 within-subject factors: gestational age of 6, 7, or 9 months; 3 levels of severity of either perinatal asphyxia or of genetic disease; attitude of the parents about prolonging care unknown, favourable, or unfavourable; and decision made individually by the physician or collectively by the medical team. Overall ratings were subjected to cluster analysis and each cluster to analysis of variance and graphic representation. Lay persons (mean acceptability rating 4.29) were significantly more favourable to euthanasia than nurses (2.84), p < .005, or physicians (2.12), p < .005. Five clusters were found with different judgment rules, i.e., how the information was integrated. More physicians (30 per cent) than nurses (14 per cent), p < .01, or lay persons (11 per cent), p < .01, rated euthanasia as never, under any condition, acceptable. Most, however, asserted that it was increasingly acceptable as the factors combined to favour it, especially when the parents desired to stop treatment. More physicians (45 per cent) and nurses (46 per cent) than lay persons (21 per cent), p < .01, used a complex conjunctive rule (level of parent's attitude x level of severity of damage x consultation with team or not) rather than a simple additive rule. Unlike law and medical ethics, most of the lay persons, nurses, and physicians judged the acceptability of euthanasia as a function of the circumstances. Most health professionals combined the factors in a conjunctive (multiplicative), rather than additive, fashion in accordance with legislation for adults in The Netherlands and elsewhere that requires a set of criteria to be fulfilled before it is legitimate to end a patient's life.
    Monash bioethics review 09/2010; 20(2):14.1-24. DOI:10.1007/BF03351524
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