A descriptive report of end-of-life care practices occurring in two neonatal intensive care units

Lam, Vanessa; Kain, Nicole; Joynt, Chloë; Manen, Michael A. van

doi:10.1177/0269216316634246

Cited by 28 publications

(36 citation statements)

References 41 publications

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“…This study demonstrated major differences in mortality, age at death, cause of death and end‐of‐life decisions in full‐term neonates admitted to the NICU and PICU at the same children's hospital in the Netherlands. Our study confirmed that most of the deaths in the NICU were as a result of perinatal asphyxia , which often leads to circulatory insufficiency and secondary cerebral and pulmonary dysfunction. After asphyxia, noncardiac congenital malformations were also common in the NICU.…”

Section: Discussionsupporting

confidence: 82%

“…Most of the studies on neonatal deaths in the Western world have focused on preterm infants and have identified four major causes of mortality: prematurity, congenital malformations, perinatal asphyxia, and sepsis . In the Netherlands, full‐term neonates who suffer from critical illnesses are commonly admitted to a neonatal intensive care unit (NICU) or paediatric intensive care unit (PICU) depending on the nature of their illness .…”

Section: Introductionmentioning

confidence: 99%

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Deaths and end‐of‐life decisions differed between neonatal and paediatric intensive care units at the same children's hospital

2017

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AimWe compared neonatal deaths and end‐of‐life decisions in a neonatal intensive care unit (NICU) and paediatric intensive care unit (PICU) in a Dutch tertiary children's hospital.SubjectsAll 235 full‐term infants who died within 28 days of life between 2003 and 2013 in the NICU (n = 199) and PICU (n = 36) were retrospectively studied.ResultsThe median length of stay was three days in the NICU and seven days in the PICU (p = 0.003). The main reasons for NICU stays were asphyxia (52.8%) and congenital malformations (42.2%), and in the PICU, they were congenital malformations (97.2%) and primarily cardiac problems (83.3%, p < 0.001). The median age of death was three days in the NICU and eight days in the PICU (p < 0.001), and mortality despite full intensive care treatment was 4.0% and 25.0%, respectively. Intensive treatment was discontinued because of poor survival chances in 25.1% of NICU and 52.8% of PICU cases (p < 0.001), and care was redirected because of expected poor quality of life in 70.9% and 22.2%, respectively.ConclusionDifferences between the age at death and end‐of‐life decisions were found between full‐term infants in the NICU and PICU in the same children's hospital. Underlying disorders and doctors’ attitudes may have played a role.

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Section: Discussionsupporting

confidence: 82%

Section: Introductionmentioning

confidence: 99%

Deaths and end‐of‐life decisions differed between neonatal and paediatric intensive care units at the same children's hospital

2017

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“…Upon diagnosis, in light of the prognosis, the family elected for comfort care, and the patient expired that day. Time to death after withdrawal of life-sustaining treatment is not commonly a protracted event(17, 18). The Delphi panel could not achieve consensus with respect to earlier election of palliative care if the diagnosis had been known soon after birth.…”

Section: Impact Of Rwgs-associated Precision Medicine On Healthcare Umentioning

confidence: 99%

Rapid Whole Genome Sequencing Decreases Morbidity and Healthcare Cost of Hospitalized Infants

Farnaes

Hildreth

Sweeney

et al. 2018

Preprint

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BACKGROUNDGenetic disorders are a leading cause of morbidity and mortality in infants. Rapid Whole Genome Sequencing (rWGS) can diagnose genetic disorders in time to change acute medical or surgical management (clinical utility) and improve outcomes in acutely ill infants.METHODSRetrospective cohort study of acutely ill inpatient infants in a regional children’s hospital from July 2016–March 2017. Forty-two families received rWGS for etiologic diagnosis of genetic disorders. Probands received standard genetic testing as clinically indicated. Primary end-points were rate of diagnosis, clinical utility, and healthcare utilization. The latter was modelled in six infants by comparing actual utilization with matched historical controls and/or counterfactual utilization had rWGS been performed at different time points.FINDINGSThe diagnostic sensitivity was 43% (eighteen of 42 infants) for rWGS and 10% (four of 42 infants) for standard of care (P=.0005). The rate of clinical utility for rWGS (31%, thirteen of 42 infants) was significantly greater than for standard of care (2%, one of 42; P=.0015). Eleven (26%) infants with diagnostic rWGS avoided morbidity, one had 43% reduction in likelihood of mortality, and one started palliative care. In six of the eleven infants, the changes in management reduced inpatient cost by $800, 000 to $2,000,000.DISCUSSIONThese findings replicate a prior study of the clinical utility of rWGS in acutely ill inpatient infants, and demonstrate improved outcomes and net healthcare savings. rWGS merits consideration as a first tier test in this setting.

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“…Despite advances in medical treatments, not all newborns survive: there is a 3.1‰ perinatal mortality rate and a 1.8‰ neonatal mortality rate (4) which corresponds to the death of 1 out of 476 children under one month of age. More than 90% of those deaths occur in NICU, after complex decisions and dilemmas to withdraw or to withhold life-sustaining treatments; this brings enormous challenges to highly differentiated teams (5)(6)(7) . Neonatal mortality data put us on the list of countries with the lowest mortality rate among children who are less than 28 days of age.…”

Section: Introductionmentioning

confidence: 99%

“…They may, at an early stage, be applied in addition to curative care and be more evident when the curative objective is no longer appropriate and the intention is to prevent and relieve newborns' suffering and the pain endured by families and increase their quality of life while they are still alive and as they face imminent death (7)(8)(9)(10)(11) . In the case of newborns who are close to death, the objective is to help them have a "good death", always maintaining a deep respect for human dignity (1,6,12) . The NPC can be coupled with intensive care at any stage of the disease in order to provide care to newborns and their families in a constant, comprehensive and individualized way and will also have clear benefits for health professionals (12) .…”

Section: Introductionmentioning

confidence: 99%

Perception of health professionals about neonatal palliative care

Silva¹,

Silva

Silva³

2019

Rev. Bras. Enferm.

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Objective: To identify the perception of health professionals about neonatal palliative care. Method: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content analysis was performed. Results: Despite their lack of training in palliative care, the health professionals showed concern for the dignity, quality of life and comfort of the newborn and family. They expressed emotional and relational difficulties in following the trajectories of serious illness and death and in the ethical decisions regarding the end-of-life. Conclusion: It is emphasized that professionals are sensitive to pain and suffering and reveal dedicated and committed in the care of the newborn and family. They are available to train and embrace the current challenges posed by the constitution of pediatric palliative care teams and to help achieve an organizational culture that advances in such care.

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A descriptive report of end-of-life care practices occurring in two neonatal intensive care units

Cited by 28 publications

References 41 publications

Deaths and end‐of‐life decisions differed between neonatal and paediatric intensive care units at the same children's hospital

Deaths and end‐of‐life decisions differed between neonatal and paediatric intensive care units at the same children's hospital

Rapid Whole Genome Sequencing Decreases Morbidity and Healthcare Cost of Hospitalized Infants

Perception of health professionals about neonatal palliative care

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