Formal procedure to facilitate the decision to withhold or withdraw life-sustaining interventions in a neonatal intensive care unit: a seven-year retrospective study

Abstract

BackgroundNeonatal deaths are often associated with the complex decision to limit or withdraw life-sustaining interventions (LSIs) rather than therapeutic impasses. Despite the existence of a law, significant disparities in clinical procedures remain. This study aimed to assess deaths occurring in a Neonatal Intensive Care Unit (NICU) and measure the impact of a traceable Limitation or Withdrawal of Active Treatment (LWAT) file on the treatment of these newborns.MethodsIn this monocentric retrospective study, we reviewed all consecutive neonatal deaths occurring during two three-year periods among patients in the NICU at the North Hospital of Marseille: cohort 1 (from 2009 to 2011 without the LWAT file) and cohort 2 (from 2013 to 2015 after introduction of the LWAT file). Newborns included were: gestational age over 22 weeks, birth weight over 500 g, and admission and death in the same NICU. Deaths were categorized according to the classification described by Verhagen et al.: 1) children who died despite cardiopulmonary resuscitation (CPR) (no withholding nor withdrawing of LSIs), (2) children who died while the ventilator, without CPR (no withdrawing of LSIs, but CPR withheld), (3) children who died after LSIs were withdrawn, or (4) LSIs were withheld.Results193 deaths were analyzed: 77 in cohort 1 and 116 in cohort 2. 50% of deaths followed the decision to limit or stop life-sustaining interventions. The mean age at death did not differ between the two cohorts (p = 0.525). An increase in the mortality rate after life-sustaining interventions were withdrawn was observed. The number of multidisciplinary decision meetings was statistically higher in cohort 2 (32.5% versus 55.2% p = 0.002), which were most often prompted due to neurological pathologies, with an increase in parental advice concerning the management of their child (p = 0.026). Even if the introduction of this file did not have an effect on patient age at death, it was significantly associated with a better understanding of end-of-life conditions (p = 0.019), including medication used to sedate and comfort the patient.ConclusionsIntroduction of the LWAT file seems imperative to develop a personalized healthcare strategy for each child and situation.Electronic supplementary materialThe online version of this article (10.1186/s12904-018-0329-x) contains supplementary material, which is available to authorized users.

Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement

“…Our calculation of the number of subjects needed was based on an equivalent distribution of patients according to the context of death from a study carried out in the department in the 2000s [ 9 ]. However, as observed in other centers, death in a context of WWLST has now become the majority condition [ 17 – 21 , 46 ]. The participation rate in the interview 3 months after infant death was consistent with our prevision and with the rates usually reported in studies on this topic [ 47 – 49 ].…”

Healthcare professionals‐related factors affecting parents' participation in decision making for neonates with life‐threatening conditions: A qualitative study

“…Nayeri et al, 2019, stated, in Iran, as a result of a lack of specific regulations within national laws and medical code of ethics regarding whether to initiate, continue or discontinue life‐saving treatments, most practitioners faced a legal gap and decided based on religious or moral beliefs 31 . Since structured and formal neonatal palliative care (NPC) is not provided in Iran, 32 a formal and legal NPC program constitutes legal support for caregivers to start an open and clear communication with parents and consider their wishes 33 . Moreover, a malpractice claim often is brought simply because parents feel the information they need to know is being kept from them.…”

Withdrawal and withholding of life sustaining treatment (WWLST): an under recognised factor in the morbidity or mortality of periviable infants?—a narrative review

“…While neonatologists have a desire for guidelines regarding the thresholds of resuscitation, they may not agree on levels of standardisation ( 95 ). However, other authors suggest introduction of standardising documents might allow for better collaboration in the multidisciplinary team in relation to end of life decisions ( 45 ). Furthermore, some authors have commented on the ethical dilemmas surrounding the development of guidelines, suggesting rigid recommendations may not be in periviable infants’ interests ( 96 - 98 ).…”

“…It may also include, but is not limited to, ionotropic support, cardiopulmonary resuscitation, nutrition, and hydration. WWLST is most often considered in infants with severe complications where death is not imminent, but neonatologists predict mortality or poor outcomes will arise ( 45 - 47 ).…”