Death in the neonatal intensive care unit: changing patterns of end of life care over two decades
Humans; infant; Intensive Care Units; Prognosis; Medical Audit; Intensive Care; Newborn; Premature; Chromosome Aberrations; Diseases/mortality; Hospital Mortality/trends; Terminal Care/trends; Cause of Death/trends; Infant Mortality/trends; Neonatal/trends; Neural Tube Defects/mortality; Victoria/epidemiology; Withholding Treatment/trends
BACKGROUND: Death remains a common event in the neonatal intensive care unit, and often involves limitation or withdrawal of life sustaining treatment. OBJECTIVE: To document changes in the causes of death and its management over the last two decades. METHODS: An audit of infants dying in the neonatal intensive care unit was performed during two epochs (1985-1987 and 1999-2001). The principal diagnoses of infants who died were recorded, as well as their apparent prognoses, and any decisions to limit or withdraw medical treatment. RESULTS: In epoch 1, 132 infants died out of 1362 admissions (9.7%), and in epoch 2 there were 111 deaths out of 1776 admissions (6.2%; p<0.001). Approximately three quarters of infants died after withdrawal of life sustaining treatment in both epochs. There was a significant reduction in the proportion of deaths from chromosomal abnormalities, and from neural tube defects in epoch 2. CONCLUSIONS: There have been substantial changes in the illnesses leading to death in the neonatal intensive care unit. These may reflect the combined effects of prenatal diagnosis and changing community and medical attitudes.
2006
Wilkinson DJ; Fitzsimons JJ; Dargaville PA; Campbell NT; Loughnan PM; McDougall PN; Mills JF
Archives Of Disease In Childhood. Fetal And Neonatal Edition
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/adc.2005.074971" target="_blank" rel="noreferrer">10.1136/adc.2005.074971</a>
Variables influencing end-of-life care in children and adolescents with cancer
Child; Female; Humans; Male; Adult; Withholding Treatment; Resuscitation Orders; adolescent; Preschool; Empirical Approach; Death and Euthanasia; decision making; infant; cause of death; Neoplasms/complications/therapy; location of death; hospice care; home care services; Terminal Care/trends
BACKGROUND: The purpose of this study was to describe the variables influencing end-of-life care in children and adolescents dying of cancer. MATERIALS AND METHODS: Records of 146 children with cancer who died at Children's Hospital were reviewed for demographics, diagnosis, location of death, withdrawal of life support, use of "do not resuscitate" (DNR) orders, and the length of time that those orders were in effect. RESULTS: Ninety-five patients were evaluated. Fifty-nine died of progressive disease and 36 deaths were therapy-related. Sixty-four percent of disease-related deaths occurred at home with support from home care or hospice. Only 10% of all patients died while receiving maximal aggressive support in the intensive care unit. Age, diagnosis (solid tumor vs. leukemia), cause of death, length of last hospital admission, and the duration of DNR orders had a significant correlation with the place of death and referral to and use of hospice. Thirty-five percent of all patients had hospice support. CONCLUSIONS: Most children who die of cancer die because of progressive disease at home with hospice support. Do not resuscitate orders were written for most patients who died. End-of-life decisions are influenced by patient diagnosis, cause of death, and age.
Klopfenstein KJ; Hutchison C; Clark C; Young D; Ruymann FB
Journal Of Pediatric Hematology/oncology
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00043426-200111000-00004" target="_blank" rel="noreferrer">10.1097/00043426-200111000-00004</a>
End-of- Life Decision-making For Newborns: A 12-year Experience In Hong Kong. Archives Of Disease In Childhood Fetal & Neonatal Edition
Cause Of Death; Decision Making; Female; Hong Kong; Humans; Infant; Infant Mortality/trends; Infant Newborn; Male; Retrospective Studies; Terminal Care/trends; Withholding Treatment/trends
Ethics; Palliative Care
SETTING
Neonatal end-of-life decisions could be influenced by cultural and ethnic backgrounds. These practices have been well described in the West but have not been systematically studied in an Asian population.
OBJECTIVES
To determine: (1) different modes of neonatal death and changes over the past 12 years and (2) factors influencing end-of-life decision-making in Hong Kong.
DESIGN
A retrospective study was conducted to review all death cases from 2002 to 2013 in the busiest neonatal unit in Hong Kong. Modes of death, demographical data, diagnoses, counselling and circumstances around the time of death, were collected and compared between groups.
RESULTS
Of the 166 deaths, 46% occurred despite active resuscitation (group 1); 35% resulted from treatment withdrawal (group 2) and 19% occurred from withholding treatment (group 3). A rising trend towards treatment withdrawal was observed, from 20% to 47% over the 12-year period. Similar number of parents chose extubation (n=44, 27%) compared with other modalities of treatment limitation (n=45, 27%). Significantly more parents chose to withdraw rather than to withhold treatment if clinical conditions were 'stable' (p=0.03), whereas more parents chose withholding therapy if treatment was considered futile (p=0.03).
CONCLUSION
In Hong Kong, a larger proportion of neonatal deaths occurred despite active resuscitation compared with Western data. Treatment withdrawal is, however, becoming increasingly more common. Unlike Western practice, similar percentages of parents chose other modalities of treatment limitation compared with direct extubation. Cultural variance could be a reason for the different end-of-life practice adopted in Hong Kong.
Chan LC; Cheung HM; Poon TC; Ma TP; Lam HS; Ng PC
Archives Of Disease In Childhood
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1136/archdischild-2015-308659