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    "textoCompleto" => "<span class="elsevierStyleSections"><p id="para0001" class="elsevierStylePara elsevierViewall">Caring for children with life-threatening or terminal conditions is among the most challenging tasks in pediatrics&#46; This challenge requires healthcare professionals to combine knowledge&#44; skills&#44; and values into an effective effort to promote the patient&#39;s quality of life and support the patient&#39;s family&#46; Pediatric Palliative Care &#40;PPC&#41; is comprehensive care for infants and children who may not or will not &#8220;get better&#46;&#8221; Although several definitions are proposed in the literature&#44; the following description seems particularly useful because it&#39;s both short and accurate&#58; PPC is the art and science of patient and family-centered care&#44; aimed at evaluating and minimizing suffering in all domains &#40;physical&#44; psychosocial&#44; and spiritual&#41;&#44; promote shared decision&#8208;making and coordinate the care of all children with life-threatening conditions as well as their families&#46;</p><p id="para0002" class="elsevierStylePara elsevierViewall">At the start of PPC developments in the late 1970s&#44; palliative care was synonymous with terminal care&#46; Nowadays&#44; an approach with several distinct stages of care is preferred&#44; based on data and clinical experience&#46;<a class="elsevierStyleCrossRef" href="#bib0001"><span class="elsevierStyleSup">1</span></a> Palliative care starts ideally at the time of diagnosis with blended care that includes disease-oriented treatments together with palliative care&#46; It also includes the stage of end-of-life care&#44; and it extends all through the disease trajectory into bereavement support&#46; Early intervention&#44; preferably by the palliative care team&#44; will facilitate better &#8220;total&#8221; care from the outset&#46;<a class="elsevierStyleCrossRef" href="#bib0002"><span class="elsevierStyleSup">2</span></a></p><p id="para0003" class="elsevierStylePara elsevierViewall">Neonatologists are generally very familiar with managing the complexity of newborns&#8217; short lives in the context of the relatively high mortality rates associated with prematurity and birth defects&#46; This is why it is essential for healthcare providers working in neonatal intensive care units &#40;NICUs&#41; to prepare to care for infants with life-limiting conditions and to be able to provide family-centered palliative care for both the infant and the family&#46; More infants and families than one might think can benefit from the inclusion of palliative care interventions in routine NICU care&#46;<a class="elsevierStyleCrossRef" href="#bib0003"><span class="elsevierStyleSup">3</span></a><span class="elsevierStyleSup">&#44;</span><a class="elsevierStyleCrossRef" href="#bib0004"><span class="elsevierStyleSup">4</span></a> However&#44; the ability or willingness of neonatologists to integrate NICU practice with new knowledge and skills coming from interdisciplinary palliative care has varied widely&#46;</p><p id="para0004" class="elsevierStylePara elsevierViewall">In this volume of the Jornal de Pediatria&#44; Marillo Palomo et al&#46;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">5</span></a> from the Sant Joan de D&#233;u Barcelona Children&#39;s Hospital in Spain&#44; report on their experience with the introduction of a neonatal palliative care protocol in their level III NICU&#46; In a retrospective observational study&#44; they compared the main causes of death and modes of death in two different time periods in a single center&#58; from 2009 to 2015&#44; and from 2016 to 2019&#46; The authors aimed to describe causes and modes of death in their unit but also to assess whether the implementation of the protocol had improved end-of-life care&#46; The development of the protocol and training of the NICU staff took place between 2012 and 2015&#46; The protocol contained criteria for recommending transition of intensive care to comfort care&#44; support throughout the care process &#40;monitoring&#44; sedation and analgesia&#44; creation of memory and care for family&#41;&#44; and elements of bereavement care for the family after death&#46; Data were derived from the medical files of 344 neonatal deaths&#46;</p><p id="para0005" class="elsevierStylePara elsevierViewall">The authors report that overall&#44; the main causes of death were congenital malformations &#40;45&#44;9&#37;&#41;&#44; prematurity related death &#40;25&#37;&#41; and hypoxic-ischaemic encephalopathy &#40;16&#44;2&#37;&#41;&#46;</p><p id="para0006" class="elsevierStylePara elsevierViewall">Roughly 75&#37; of deaths occurred after transition or redirection from intensive care to palliative care was made&#46; This transition of care almost always included withdrawal of life sustaining treatments &#40;71&#44;5&#37;&#41; or withholding of additional treatments and&#47;or resuscitation &#40;DNR&#41;&#46; The main reason for transition to palliative care was the predicted poor neurocognitive outcome in slightly less than 50&#37; of deaths&#46; Causes and modes of death were largely similar in both time periods&#46;</p><p id="para0007" class="elsevierStylePara elsevierViewall">The intervention of implementing a neonatal palliative care protocol and training of the NICU staff appeared to have a positive effect on end-of-life care&#46; The authors report an increase in end-of-life support for the patient and parents after the implementation of the protocol&#46; Parental presence and death in a private room &#40;as opposed to death in the NICU&#41; occurred significantly more often and more photos were made&#46; These are relevant differences because memory-making is an important practice to support and guide family bereavement&#46; It can facilitate a continuing bond with their child&#46;<a class="elsevierStyleCrossRef" href="#bib0006"><span class="elsevierStyleSup">6</span></a></p><p id="para0008" class="elsevierStylePara elsevierViewall">The study of Marillo Palomo et al&#46;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">5</span></a> is not without limitations&#46; It is unfortunate&#44; for example&#44; that they did not use uniform definitions of interventions and physiological conditions of the newborns and more details about end-of-life care and the manner in which the newborns in the NICU actually died&#46; Within nations and across national borders&#44; comparisons are increasingly made of mortality rates among hospitals and health care systems&#44; along with comparisons of processes of care provided to infants&#46; Classification schemes are developed to account for all modes of infant deaths&#44; prenatally and postnatally&#44; in order to study differences in processes and quality of care in different institutions and&#47;or countries&#46;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a><span class="elsevierStyleSup">&#44;</span><a class="elsevierStyleCrossRef" href="#bib0008"><span class="elsevierStyleSup">8</span></a> Uniform classification of deaths is feasible and needed when comparing outcomes between NICUs&#46; It offers an important step towards transparency about the norms and values of stakeholders in decision-making about withholding and&#47;or withdrawing life-sustaining treatments and true comparison of NICU outcomes&#46;</p><p id="para0009" class="elsevierStylePara elsevierViewall">This issue&#44; however&#44; should not distract us from the fact that the analysis and observations made by Marillo Palomo et al&#46;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">5</span></a> are important and relevant&#46; They show that the course of NICU care for severely ill newborns can be modified if the prognosis becomes really poor&#46; The main intervention they describe is the creation and implementation of a neonatal palliative care protocol&#44; supported by NICU staff training&#46; This combination worked out well in supporting the transition to palliative care for a substantial number of severely ill patients with a poor prognosis and their families&#46; If the authors keep in mind that the study was conducted only a short time after the intervention had started&#44; the results of increased end-of-life support are even more significant and hopeful&#46; These outcomes may open the door to future palliative care interventions in this unit and&#47;or in others&#46; For example&#58; the implementation of perinatal palliative care protocol to combine care&#44; skills&#44; training&#44; and research for pre- and postnatal care&#46; I am sure that future patients&#44; parents&#44; and healthcare providers would profit from that&#46;</p></span>"
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Editorial
Death, dying and palliative care in the NICU
A.A. Eduard Verhagen
University Medical Center Groningen, Department of Pediatrics, University of Groningen, Groningen, the Netherlands
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    "titulo" => "Death&#44; dying and palliative care in the NICU"
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        "autoresLista" => "A&#46;A&#46; Eduard Verhagen"
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            "nombre" => "A&#46;A&#46; Eduard"
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    "textoCompleto" => "<span class="elsevierStyleSections"><p id="para0001" class="elsevierStylePara elsevierViewall">Caring for children with life-threatening or terminal conditions is among the most challenging tasks in pediatrics&#46; This challenge requires healthcare professionals to combine knowledge&#44; skills&#44; and values into an effective effort to promote the patient&#39;s quality of life and support the patient&#39;s family&#46; Pediatric Palliative Care &#40;PPC&#41; is comprehensive care for infants and children who may not or will not &#8220;get better&#46;&#8221; Although several definitions are proposed in the literature&#44; the following description seems particularly useful because it&#39;s both short and accurate&#58; PPC is the art and science of patient and family-centered care&#44; aimed at evaluating and minimizing suffering in all domains &#40;physical&#44; psychosocial&#44; and spiritual&#41;&#44; promote shared decision&#8208;making and coordinate the care of all children with life-threatening conditions as well as their families&#46;</p><p id="para0002" class="elsevierStylePara elsevierViewall">At the start of PPC developments in the late 1970s&#44; palliative care was synonymous with terminal care&#46; Nowadays&#44; an approach with several distinct stages of care is preferred&#44; based on data and clinical experience&#46;<a class="elsevierStyleCrossRef" href="#bib0001"><span class="elsevierStyleSup">1</span></a> Palliative care starts ideally at the time of diagnosis with blended care that includes disease-oriented treatments together with palliative care&#46; It also includes the stage of end-of-life care&#44; and it extends all through the disease trajectory into bereavement support&#46; Early intervention&#44; preferably by the palliative care team&#44; will facilitate better &#8220;total&#8221; care from the outset&#46;<a class="elsevierStyleCrossRef" href="#bib0002"><span class="elsevierStyleSup">2</span></a></p><p id="para0003" class="elsevierStylePara elsevierViewall">Neonatologists are generally very familiar with managing the complexity of newborns&#8217; short lives in the context of the relatively high mortality rates associated with prematurity and birth defects&#46; This is why it is essential for healthcare providers working in neonatal intensive care units &#40;NICUs&#41; to prepare to care for infants with life-limiting conditions and to be able to provide family-centered palliative care for both the infant and the family&#46; More infants and families than one might think can benefit from the inclusion of palliative care interventions in routine NICU care&#46;<a class="elsevierStyleCrossRef" href="#bib0003"><span class="elsevierStyleSup">3</span></a><span class="elsevierStyleSup">&#44;</span><a class="elsevierStyleCrossRef" href="#bib0004"><span class="elsevierStyleSup">4</span></a> However&#44; the ability or willingness of neonatologists to integrate NICU practice with new knowledge and skills coming from interdisciplinary palliative care has varied widely&#46;</p><p id="para0004" class="elsevierStylePara elsevierViewall">In this volume of the Jornal de Pediatria&#44; Marillo Palomo et al&#46;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">5</span></a> from the Sant Joan de D&#233;u Barcelona Children&#39;s Hospital in Spain&#44; report on their experience with the introduction of a neonatal palliative care protocol in their level III NICU&#46; In a retrospective observational study&#44; they compared the main causes of death and modes of death in two different time periods in a single center&#58; from 2009 to 2015&#44; and from 2016 to 2019&#46; The authors aimed to describe causes and modes of death in their unit but also to assess whether the implementation of the protocol had improved end-of-life care&#46; The development of the protocol and training of the NICU staff took place between 2012 and 2015&#46; The protocol contained criteria for recommending transition of intensive care to comfort care&#44; support throughout the care process &#40;monitoring&#44; sedation and analgesia&#44; creation of memory and care for family&#41;&#44; and elements of bereavement care for the family after death&#46; Data were derived from the medical files of 344 neonatal deaths&#46;</p><p id="para0005" class="elsevierStylePara elsevierViewall">The authors report that overall&#44; the main causes of death were congenital malformations &#40;45&#44;9&#37;&#41;&#44; prematurity related death &#40;25&#37;&#41; and hypoxic-ischaemic encephalopathy &#40;16&#44;2&#37;&#41;&#46;</p><p id="para0006" class="elsevierStylePara elsevierViewall">Roughly 75&#37; of deaths occurred after transition or redirection from intensive care to palliative care was made&#46; This transition of care almost always included withdrawal of life sustaining treatments &#40;71&#44;5&#37;&#41; or withholding of additional treatments and&#47;or resuscitation &#40;DNR&#41;&#46; The main reason for transition to palliative care was the predicted poor neurocognitive outcome in slightly less than 50&#37; of deaths&#46; Causes and modes of death were largely similar in both time periods&#46;</p><p id="para0007" class="elsevierStylePara elsevierViewall">The intervention of implementing a neonatal palliative care protocol and training of the NICU staff appeared to have a positive effect on end-of-life care&#46; The authors report an increase in end-of-life support for the patient and parents after the implementation of the protocol&#46; Parental presence and death in a private room &#40;as opposed to death in the NICU&#41; occurred significantly more often and more photos were made&#46; These are relevant differences because memory-making is an important practice to support and guide family bereavement&#46; It can facilitate a continuing bond with their child&#46;<a class="elsevierStyleCrossRef" href="#bib0006"><span class="elsevierStyleSup">6</span></a></p><p id="para0008" class="elsevierStylePara elsevierViewall">The study of Marillo Palomo et al&#46;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">5</span></a> is not without limitations&#46; It is unfortunate&#44; for example&#44; that they did not use uniform definitions of interventions and physiological conditions of the newborns and more details about end-of-life care and the manner in which the newborns in the NICU actually died&#46; Within nations and across national borders&#44; comparisons are increasingly made of mortality rates among hospitals and health care systems&#44; along with comparisons of processes of care provided to infants&#46; Classification schemes are developed to account for all modes of infant deaths&#44; prenatally and postnatally&#44; in order to study differences in processes and quality of care in different institutions and&#47;or countries&#46;<a class="elsevierStyleCrossRef" href="#bib0007"><span class="elsevierStyleSup">7</span></a><span class="elsevierStyleSup">&#44;</span><a class="elsevierStyleCrossRef" href="#bib0008"><span class="elsevierStyleSup">8</span></a> Uniform classification of deaths is feasible and needed when comparing outcomes between NICUs&#46; It offers an important step towards transparency about the norms and values of stakeholders in decision-making about withholding and&#47;or withdrawing life-sustaining treatments and true comparison of NICU outcomes&#46;</p><p id="para0009" class="elsevierStylePara elsevierViewall">This issue&#44; however&#44; should not distract us from the fact that the analysis and observations made by Marillo Palomo et al&#46;<a class="elsevierStyleCrossRef" href="#bib0005"><span class="elsevierStyleSup">5</span></a> are important and relevant&#46; They show that the course of NICU care for severely ill newborns can be modified if the prognosis becomes really poor&#46; The main intervention they describe is the creation and implementation of a neonatal palliative care protocol&#44; supported by NICU staff training&#46; This combination worked out well in supporting the transition to palliative care for a substantial number of severely ill patients with a poor prognosis and their families&#46; If the authors keep in mind that the study was conducted only a short time after the intervention had started&#44; the results of increased end-of-life support are even more significant and hopeful&#46; These outcomes may open the door to future palliative care interventions in this unit and&#47;or in others&#46; For example&#58; the implementation of perinatal palliative care protocol to combine care&#44; skills&#44; training&#44; and research for pre- and postnatal care&#46; I am sure that future patients&#44; parents&#44; and healthcare providers would profit from that&#46;</p></span>"
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Jornal de Pediatria (English Edition)
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