Introduction: Most neonatal deaths in industrialized countries follow a process of redirection of care. The objectives of this study were to describe how neonates die in a middle-income country, whether there was redirection of care, and the reason for this decision. Methods: This was a prospective, multicenter, cross-sectional study. Neonates who died in the delivery room or in the neonatal intensive care unit in 97 hospitals over a 6-month period were included. After each neonatal death, one investigator interviewed a member of the healthcare team who had been involved in the end-of-life care process. Perinatal data, conditions that led to death, whether there was redirection of care, and details of the end-of-life process were recorded. Results: Data from 697 neonatal deaths were analyzed, which represent 80% of the total deaths occurring in Argentina in that period. The main causes of death were complications of prematurity (47%) and congenital anomalies (27%). Overall, 32% of neonates died after a process of redirection of care, and this was less frequent in the neonatal intensive care unit (28%) than in the delivery room (70%, p < 0.001). The reasons for withholding/withdrawing care were inevitable death (75%) and severe compromise of expected quality of life (25%). Redirection of care consisted in withholding therapies in 66% and withdrawal in 34%. A diagnosis of a major congenital anomaly increased the odds of redirection of care (OR 5.45; 95% CI: 3.59–8.27). Conclusion: Most neonates who die in Argentina do so while receiving full support. Redirection of care mainly follows a condition of inevitable death.

The death of a newborn seems a contradiction, an error of nature. However, neonatal death is a reality and a problem that concerns different disciplines such as public health and bioethics. While the causes are obviously important to develop strategies to decrease them, the way neonates die is essential, including the shared decisions about specific therapies and the care provided at the end of life. To avoid therapies without beneficial effects, neonatal deaths in more industrialized countries follow a process of redirection of care, that is, addressing comfort and avoiding pain instead of looking for a cure that is not possible. The objectives of this study were to describe how neonates die in a middle-income country, whether there was redirection of care, and the reason for this decision. Over a 6-month period, health professionals who were involved in the terminal care of neonates were interviewed within 7 days of the death, and data of the end-of-life process were recorded. We gathered information on 697 neonatal deaths, which represent 80% of the total deaths occurring in Argentina in that period. Overall, 32% of neonates died after a process of redirection of care, most of them because of an inevitable death and a lower percentage because of severe compromise of expected quality of life. In conclusion, in contrast to more industrialized countries, most neonates who die in Argentina do so while receiving full support and when care is redirected, this decision mainly follows a condition of inevitable death.

1.
Ministerio de Salud Argentina, Dirección de Estadística e Información de Salud Estadísticas Vitales. Información básica Argentina, año 2021
. Available from: https://www.argentina.gob.ar/sites/default/files/serie_5_nro_65_anuario_vitales_2021_-_web.pdf.
2.
Finkelstein
JZ
,
Duhau
M
,
Fasola
ML
,
Escobar
P
.
Neonatal mortality in Argentina. Situation analysis from 2005 to 2014
.
Arch Argent Pediatr
.
2017
;
115
(
4
):
343
9
.
3.
Bucher
HU
,
Klein
SD
,
Hendriks
MJ
,
Baumann-Hölzle
R
,
Berger
TM
,
Streuli
JC
, et al
.
Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses
.
BMC Pediatr
.
2018
;
18
(
1
):
81
.
4.
Janvier
A
,
Barrington
K
,
Farlow
B
.
Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology
.
Semin Perinatol
.
2014
;
38
(
1
):
38
46
.
5.
Wilkinson
DJC
,
Bertaud
S
.
End of life care in the setting of extreme prematurity: practical challenges and ethical controversies
.
Semin Fetal Neonatal Med
.
2023
;
28
(
4
):
101442
.
6.
Silberberg
A
,
Herich
LC
,
Croci
I
,
Cuttini
M
,
Villar
MJ
,
Requena Meana
P
.
Limitation of life-sustaining treatment in NICU: physicians’ beliefs and attitudes in the Buenos Aires region
.
Early Hum Dev
.
2020
;
142
:
104955
.
7.
Winters
JP
.
When parents refuse: resolving entrenched disagreements between parents and clinicians in situations of uncertainty and complexity
.
Am J Bioeth
.
2018
;
18
(
8
):
20
31
.
8.
Hellmann
J
,
Knighton
R
,
Lee
SK
,
Shah
PS
,
Canadian Neonatal Network End of Life Study Group
.
Neonatal deaths: prospective exploration of the causes and process of end-of-life decisions
.
Arch Dis Child Fetal Neonatal Ed
.
2016
;
101
(
2
):
F102
7
.
9.
Weiner
J
,
Sharma
J
,
Lantos
JD
,
Kilbride
H
.
How infants die in the neonatal intensive care unit: trends from 1999 through 2008
.
Arch Pediatr Adolesc Med
.
2011
;
165
(
7
):
630
4
.
10.
Lin
M
,
Deming
R
,
Wolfe
J
,
Cummings
C
.
Infant mode of death in the neonatal intensive care unit: a systematic scoping review
.
J Perinatol
.
2022
;
42
(
5
):
551
68
.
11.
Verhagen
AAE
,
Janvier
A
,
Leuthner
SR
,
Andrews
B
,
Lagatta
J
,
Bos
AF
, et al
.
Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and The Netherlands
.
J Pediatr
.
2010
;
156
(
1
):
33
7
.
12.
Fajardo
CA
,
González
S
,
Zambosco
G
,
Cancela
MJ
,
Forero
LV
,
Venegas
M
, et al
.
End of life, death and dying in neonatal intensive care units in Latin America
.
Acta Paediatr
.
2012
;
101
(
6
):
609
13
.
13.
Silberberg
AA
,
Gallo
JE
.
Ethical dilemmas associated with clinicians’ decisions about treatment in critically ill infants born in Córdoba, Argentina
.
J Child Health Care
.
2017
;
21
(
1
):
121
6
.
14.
Mariani
GL
,
Konikoff
LL
.
Withdrawing assisted nutrition in neonates: a survey on attitudes and insights in Argentina
.
Am J Perinatol
.
2023
Online ahead of print.
15.
Verhagen
AA
,
Janvier
A
.
The continuing importance of how neonates die
.
JAMA Pediatr
.
2013
;
167
(
11
):
987
8
.
16.
Wilkinson
D
.
Sleep softly: schubert, ethics and the value of dying well
.
J Med Ethics
.
2020
;
47
(
4
):
218
24
.
17.
von Elm
E
,
Altman
DG
,
Egger
M
,
Pocock
SJ
,
Gøtzsche
PC
,
Vandenbroucke
JP
, et al
.
The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies
.
Lancet
.
2007
;
370
(
9596
):
1453
7
.
18.
Althabe
M
,
Cardigni
G
,
Vassallo
JC
,
Allende
D
,
Berrueta
M
,
Codermatz
M
, et al
.
Dying in the intensive care unit: collaborative multicenter study about forgoing life-sustaining treatment in Argentine pediatric intensive care units
.
Pediatr Crit Care Med
.
2003
;
4
(
2
):
164
9
.
19.
Wilkinson
DJ
,
Fitzsimons
JJ
,
Dargaville
PA
,
Campbell
NT
,
Loughnan
PM
,
McDougall
PN
, et al
.
Death in the neonatal intensive care unit: changing patterns of end of life care over two decades
.
Arch Dis Child Fetal Neonatal Ed
.
2006
;
91
(
4
):
F268
71
.
20.
Aladangady
N
,
Shaw
C
,
Gallagher
K
,
Stokoe
E
,
Marlow
N
,
for Collaborators Group
.
Short-term outcome of treatment limitation discussions for newborn infants, a multicentre prospective observational cohort study
.
Arch Dis Child Fetal Neonatal Ed
.
2017
;
102
(
2
):
F104
9
.
21.
Brumbaugh
JE
,
Bann
CM
,
Bell
EF
,
Travers
CP
,
Vohr
BR
,
McGowan
EC
, et al
.
Social determinants of health and redirection of care for infants born extremely preterm
.
JAMA Pediatr
.
2024
;
11
:
e240125
Online ahead of print.
22.
Grupo de Trabajo de la Sociedad Española de Neonatología sobre Limitación del Esfuerzo Terapéutico y Cuidados Paliativos en recién nacidos
.
Grupo de Trabajo de la Sociedad Española de Neonatología sobre Limitación del Esfuerzo Terapéutico y Cuidados Paliativos en recién nacidos. Decisiones de limitación del esfuerzo terapéutico en recién nacidos críticos: estudio multicéntrico
.
An Esp Pediatr
.
2002
;
57
(
6
):
547
53
.
23.
Lin
M
,
Vitcov
GG
,
Cummings
CL
.
Moral equivalence theory in neonatology
.
Semin Perinatol
.
2022
;
46
(
3
):
151525
.
24.
Wilkinson
D
,
Butcherine
E
,
Savulescu
J
.
Withdrawal aversion and the equivalence test
.
Am J Bioeth
.
2019
;
19
(
3
):
21
8
.
25.
Mariani
GL
,
Arimany
M
.
Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part I)
.
Arch Argent Pediatr
.
2023
;
121
(
1
):
e202202635
.
26.
Mariani
GL
,
Arimany
M
.
Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part II)
.
Arch Argent Pediatr
.
2023
;
121
(
2
):
e202202872
.
27.
Peralta
D
,
Bogetz
J
,
Lemmon
ME
.
Seminars in Fetal and neonatal medicine: palliative and end of life care in the NICU
.
Semin Fetal Neonatal Med
.
2023
;
28
(
3
):
101457
.
28.
Haward
MF
,
Gaucher
N
,
Payot
A
,
Robson
K
,
Janvier
A
.
Personalized decision making: practical recommendations for antenatal counseling for fragile neonates
.
Clin Perinatol
.
2017
;
44
(
2
):
429
45
.
29.
Haward
MF
,
Payot
A
,
Feudtner
C
,
Janvier
A
.
Personalized communication with parents of children born at less than 25 weeks: moving from doctor-driven to parent-personalized discussions
.
Semin Perinatol
.
2022
;
46
(
2
):
151551
.
30.
Michel
MC
,
Colaizy
TT
,
Klein
JM
,
Segar
JL
,
Bell
EF
.
Causes and circumstances of death in a neonatal unit over 20 years
.
Pediatr Res
.
2018
;
83
(
4
):
829
33
.
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