BACKGROUND: We aim to describe the access to palliative care (PC) in hospitalized children during end-of-life care and compare the circumstances surrounding the deaths of hospitalized children as a basis for implementing a pediatric PC program at our institution.
METHODS: We performed a retrospective chart review of deceased pediatric patients at a tertiary referral hospital in Colombia. The study group was selected by randomly drawing a sample of 100 observations from the 737 deceased children from 2013 to 2016. A 1:1 propensity score (PS) matching was performed to compare the characteristics and outcomes between PC and non-PC treated patients.
RESULTS: We included 87 patients. After PS matching, we found that patients under the care of non-PC physicians were more likely to die in the pediatric intensive care unit (non-PC: 6/10 vs PC: 1/10; P = .02), to be on vasopressor agents and mechanical ventilation (non-PC: 7/10 vs PC: 1/10; P = .02), and to receive cardiopulmonary resuscitation at the end of life (non-PC: 5/10 vs PC: 0/10; P = .03). In contrast, a significantly higher proportion of patients under the care of the pediatric PC team died with comfort measures (non-PC: 2/10 vs 8/10; P = .02) and nonescalation of care in physician orders (non-PC: 5/10 vs PC: 10/10; 0.03).
CONCLUSION: In this study, only 10 of 87 patients were treated by the pediatric PC team at the end of life. The latter finding is concerning and is a call to action to improve access to pediatric PC at our institution.
Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
Elisa, grièvement blessée dans un accident de voiture sur la route des vacances, assiste impuissante à la mort de son bébé, brûlé vif dans l'explosion du véhicule. Après des mois de rééducation, ne parvenant pas à surmonter la douleur et la souffrance de l'absence, elle décide d'en finir. Mais elle ne parvient pas à ses fins et part en Finlande pour tenter de fuir ses démons.
Objective : To summarize and synthesize extant literature on memory making in bereavement care for parents who experience the death of a newborn and to identify opportunities for future research.
Data Sources : We conducted a systematic search of four health-related databases (MEDLINE Complete, CINAHL Complete, Embase, and PsychINFO) for original research in January 2019. We then conducted a manual search of the reference lists of all included articles and a citation search via Scopus.
Study Selection : Selection criteria initially included all original research articles available in English that related to parents’ perceptions of perinatal or neonatal palliative care or bereavement care for parents after the death of a newborn. These criteria were refined as we developed familiarity with the available literature. Our initial screening of article titles and abstracts yielded 287 articles for full-text review. After full-text analysis, we included all 25 qualitative or mixed method research articles that met selection criteria.
Data Extraction : We used a spreadsheet modeled on the Joanna Briggs Institute Review Guidelines (2015) for data extraction.
Data Synthesis : Available research was focused primarily on parents’ perceptions of care during and after the death of their newborns. Memory making interventions emerged as significant elements of the experiences of bereaved parent. Several researchers examined parents’ perceptions of specific memory making interventions, such as bereavement photography. Contact with the newborn, opportunities for caregiving, bereavement photography, and the collection or creation of mementos emerged as important elements of memory making. Parents also identified a need for guidance about each of these key strategies for memory making.
Conclusion : We identified few studies focused entirely on memory making as an intervention in the context of bereavement care for parents. However, memory making emerged as a recurring theme throughout qualitative and mixed method studies on parents’ perceptions of perinatal or neonatal end-of-life care. Further research is required to provide evidence to guide memory making interventions for bereaved parents who experience the death of a newborn.
Sam, 9 ans, fait sa rentrée dans une nouvelle école et doit affronter de nouveaux copains avec la tristesse d'un petit garçon qui vient de perdre sa petite soeur d'une maladie neurodégénérative.
Nous le suivons dans sa nouvelle vie avec toutes ses questions, ses doutes, ses chagrins, les rencontres qui le consolent, les premières fois sans... Et les sentiments qui l'assaillent à la naissance d'une autre petite soeur.
Cet article est une mise au point sur la mort inattendue du nourrisson, qui malgré une forte baisse, reste la 1ère cause de décès au-delà de la période néonatale, justifiant de renforcer les mesures de prévention et d'en comprendre la cause. (Adapté du R.A.).
Origine : BDSP. Notice produite par APHPDOC ltR0xAqF. Diffusion soumise à autorisation
Même s'il n'est pas confronté directement à la mort, l'enfant s'interroge.
Parfois des deuils frappent tôt. On ne répond pas toujours à ses questions. Il pressent, il devine à travers les non-dits ou les dérobades des adultes, le poids de la souffrance, le chagrin d'une séparation.
Faute d'explication, l'enfant s'en invente, à la mesure de son expérience et de sa compréhension.... Mieux vaut en parler avec lui, l'écouter, lui dire avec ses mots à soi, avec tendresse, ce que l'on sait et ce que l'on vit.
Pregnancies after loss are often characterized by feelings of depression, anxiety, trauma-like symptoms, and problems bonding to the fetus. Difficulties bonding to the unborn baby during pregnancy are of clinical importance because they are predictive of problems in the mother-infant attachment relationship, perhaps explaining why some studies show a higher risk of insecure attachment for babies born after loss. O'Leary (2004) has proposed that problems in prenatal bonding during pregnancies after loss are the result of the challenge these mothers face of having to grieve the loss of one baby while bonding to another. This article argues that the theory of mentalization helps to explain why some parents successfully resolve this central challenge during pregnancies after loss and go on to develop a secure attachment to the next infant, whereas others continue to experience long-term attachment problems. Specifically, pregnancies after loss are conceptualized as a potentially traumatic experience in which mentalization may decrease and, at the same time, serve as a protective factor against attachment problems with infants born after loss due to unresolved trauma and grief. Several aspects of mentalization, including the capacity to mentalize: (a) affect associated with trauma and loss, (b) attachment relationships as distinct, (c) multiple and conflicting mental states, and (d) early inadequate attachment experiences related to trauma and loss, are proposed to help mothers pregnant after loss to mourn the loss of one baby while attaching to another, ameliorating potential attachment problems postpartum. Clinical interventions for facilitating these mentalizing capacities are suggested.
Over 45 million people are estimated to be trapped in modern slavery across the world with the UK one of the most prominent destination countries in Europe for people trafficking. Despite these shocking numbers, slavery and trafficking are a phenomenon infrequently reported in hospice and palliative care literature. In this case study, Beth Ward describes the end-of-life care for a baby from two days to five weeks old and the concerted support for his mother, who the hospice team believed had been trafficked into the UK.
A 3-month-old boy with failure to thrive was referred to a nephrology clinic after a diagnostic workup for failure to thrive revealed a serum urea nitrogen level of 95 mg/dL and creatinine level of 3.6 mg/dL. A renal ultrasound revealed marked bilateral hydronephrosis with little remaining renal cortex in either kidney. A voiding cystourethrogram revealed evidence of posterior urethral valves. The child had no evident comorbidities. Fulguration of the valves was successfully performed but did not lead to improvement in kidney function. The nephrologists recommended the initiation of dialysis with the hope that the child would be able to receive a kidney transplant in the future. After careful consideration, the family stated that they did not want this child to suffer with a lifetime of dialysis and transplant care. They were also concerned about the impact of this child's illness on their other 2 children and their family. They requested that their son be provided with palliative care only. Experts in nephrology, bioethics, and critical care discuss the ethical issues raised by this parental request.
Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.
Certains parents devront faire face au décès de leur enfant à naître ou de leur nourrisson. Lorsqu’ils reviennent au travail à la suite de cette perte, leur peine est souvent encore vive. Le soutien qu’ils reçoivent de leur supérieur hiérarchique ou de leurs collègues peut cependant faciliter la reprise de leur activité professionnelle. Cette recherche empirique de type exploratoire a pour objectif principal d’examiner le soutien social qu’ont reçu les parents endeuillés de la part des membres de leur organisation lors de leur retour au travail. Des groupes de discussion ont été menés avec des femmes ayant vécu un deuil périnatal. L’analyse de contenu a permis de conclure que le soutien en provenance des membres de l’organisation est fondamental lors du retour au travail mais trop souvent lacunaire.
Perdre un bébé reste toujours un grand drame dans une vie de parents. Dans un contexte de soins palliatifs, la puéricultrice, par sa présence et son écoute, peut les aider à retrouver leur place et leurs gestes de parents et à préserver le lien avec leur bébé. En effet, il ne s'agit pas d'attendre la mort mais bien d'accompagner la vie, aussi courte soit elle.
Cet article est le témoignage d'une puéricultrice de son vécu face à des situations délicates et complexes en soins palliatifs en médecine néonatale. Elle aborde notamment la prise de décision, l'accompagnement du bébé et de sa famille et des situations rencontrées dans le service.
La mort d'un proche est une épreuve pour les enfants. Pour mieux les aider, il est important de saisir ce qu'ils comprennent, ou non, en fonction de leur âge. Ce chapitre donne quelques clés pour aborder ce sujet avec les enfants en fonction des étapes de leur développement.