Le développement exponentiel de nouvelles techniques dans le domaine médical s’applique aussi aux patients en fin de vie, opérant un changement dans les mentalités. La fréquence et la manière de mourir des enfants se sont modifiées tout comme la représentation que l’on s’en fait. L’objectif de notre étude était d’évaluer les enjeux et la représentation de la mort du nouveau-né et de l’enfant dans la société française contemporaine ainsi que les déterminants socioculturels pouvant les conditionner.
Context: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering.
Objectives: To examine bereaved parents' perceptions of infant suffering in the NICU.
Methods: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death.
Results: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making.
Conclusion: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.
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.
Ce livre regroupe l'ensemble des informations nécessaires à la pratique des soins palliatifs pédiatriques : cadre réglementaire, concepts théoriques et projet de soin. Ayant pour fil conducteur les questions auxquelles le praticien et les équipes sont confrontés au quotidien, l'ouvrage prend en compte les interactions pluridisciplinaires.
Objective: To explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide.
Methods: A cross-sectional national study on moderate-to-severe HIE in newborns =35 weeks’ gestational age in 2015, including all 57 level III units that offered hypothermia. Forty-one questions were included to explore how the prognosis is established, as well as timing of the decision-making process, and also how ongoing palliative care is offered.
Results: The main difficulties in EoL decisions lie in the scarce time to make an early, accurate prognosis. Only 20% shared the neurological prognosis with the parents within 72 hours of life, and in only a third of the centres is the nurse present when the prognostic information is given to the family. Almost 50% do not use protocols to order the EoL process. Practically, all centres (91%) reported taking into account the wishes of the parents. However, in 30% the team does not always reach consensus on how the withdrawal process. Specialised psychological support is available in 54% of the hospitals; in more than 50%, interviews are not arranged to examine the grieving process with parents.
Conclusions: There are four areas for improvement in the comprehensive, multidisciplinary approach to the EoL decision in the patient with HIE: (1) the need for EoL and interdisciplinary palliative care protocols, (2) participation of nurses in the process and improvement in the nurse–physician communication, (3) psychological support for parents involved in the EoL decisions and (4) implementation of strategies to give support during the grieving process.
OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents.
DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and Evaluation (GRADE) method was applied), including the ethical and legal references, in order to propose shared care pathway.
SETTING: Maternal-Infant Department of Padua's University Hospital.
PATIENTS: PnPC eligible population has been divided into three main groups: extremely preterm newborns (first group), newborns with prenatal/postnatal diagnosis of life-limiting and/or life-threatening disease and poor prognosis (second group) and newborns for whom a shift to PnPC is appropriate after the initial intensive care (third group).
INTERVENTIONS: The multidisciplinary WG has shared care pathway for these three groups and defined roles and responsibilities.
MAIN OUTCOME MEASURES: Prenatal and postnatal management, symptom's treatment, end-of-life care.
RESULTS: The best care setting and the best practice for PnPC have been defined, as well as the indications for family support, corpse management and postmortem counselling, as well suggestion for conflicts' mediation.
CONCLUSIONS: PnPC represents an emerging field within the paediatric palliative care and calls for the development of dedicated shared pathways, in order to ensure accessibility and quality of care to this specific population of newborns.
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.
Background: Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition.
Objective: The objective of the study was to (1) discover important components of a birth plan for parents and providers who carry them out, and (2) understand the experience of parents and providers with birth plans.
Methods: The study design involves mixed-methods, descriptive, exploratory survey. This involves parents (n = 20) of a pregnancy complicated by a life-limiting diagnosis and providers who care for them (n = 116). The approach involves descriptive and univariate analyses for quantitative data and thematic analysis for qualitative data.
Results: Consistent components for families and physicians were diagnosis and medical management of the infant. Families gave greater emphasis on memory-making preferences. Parents feel birth plans give them a sense of control. Themes emerged from parents' experience of creating a birth plan are as follows: sense of control, therapeutic, memory making, effective communication, feeling prepared, and unexpected events. Most physicians feel comfortable discussing goals of care with families but report insufficient time. The importance of components of birth plans and perception of the parents' understanding of the prognosis varied by specialty.
Discussion: Birth plans are beneficial and provide a greater sense of control for parents. Most physicians feel comfortable utilizing them. More than one-third of the physicians do not feel that they have time to complete a birth plan with parents. Communication between physicians and families about limitations of the plan and the potential trajectories could be improved. Communication between maternal and neonatal care providers regarding parent expectations and understanding could also be improved.
Background: Heterotaxy is a condition of abnormal lateralization of organs across the body's left-right axis, causing multiple congenital malformations. The anatomic manifestations of heterotaxy syndrome generally follow one of two patterns, referred to as right atrial isomerism (with two similar right atria and duplication of right-sided features of multiple organs) and left atrial isomerism (with two similar left atria and duplication of left-sided features of multiple organs). Cardiac surgical intervention for patients with heterotaxy syndrome depends on ventricular physiology and circulatory balance. For patients with single-ventricle physiology, a Fontan operation, which directs systemic venous return to the pulmonary arteries, is the definitive intervention. Prior to a Fontan operation, many patients require one or more palliative surgeries (eg, a Blalock-Taussig-Thomas shunt or bidirectional Glenn/Kawashima procedure) to prepare them for definitive correction.
Case Report: We present the case of a term female neonate who was transferred to our pediatric cardiovascular intensive care unit for management of suspected congenital cardiac disease. Echocardiography confirmed the diagnosis of heterotaxy syndrome with left atrial isomerism, an interrupted inferior vena cava with azygos continuation, and a hypoplastic left ventricle with single-ventricle physiology. At 11 months of age, she underwent a Kawashima procedure with subtotal pulmonary artery ligation. She tolerated the procedure well and is anticipated to remain stable for the near future, possibly without the need for further cardiac surgery.
Conclusion: Patients with heterotaxy syndrome have congenital malformations in several organ systems, requiring lifelong coordination of care among health providers across multiple disciplines.
The death of an infant in the neonatal intensive care unit (NICU) is a profound and unexpected loss for parents that results in a complex process of coping with bereavement. A descriptive qualitative approach was used to explore parent bereavement and coping experiences after infant death in the NICU. The dual process model of coping with bereavement was used as a conceptual framework to help understand how parents cope with grief after infant death. Living with infant death was a process that resulted in major life changes and a process of oscillating among various coping strategies.
Soutenir les parents de nouveau-nés en fin de vie lors de l’hospitalisation inattendue de leur enfant en soins intensifs néonatals, les parents vivent plusieurs émotions intenses et éprouvent un sentiment profond d’incertitude, voire d’angoisse. Les résultats préliminaires d’une revue de littérature permettent de documenter les besoins des parents de nouveau-nés prématurés en fin de vie admis en soins intensifs. Le soutien offert par les professionnels est essentiel. Les besoins d’information et d’écoute constituent des éléments fondamentaux à cette expérience.en soins intensifs néonatals
Fetuses at low gestational age limit of viability, neonates with life threatening or life limiting congenital anomalies and deteriorating acutely ill newborn babies in intensive care, pose taxing ethical questions on whether to forego or stop treatment and allow them to die naturally. Although there is essentially no ethical difference between end of life decision between neonates and other children and adults, in the former, the fact that we are dealing with a new life, may pose greater problems to staff and parents. Good communication skills and involvement of all the team and the parents should start from the beginning to see which treatment can be foregone or stopped in the best interests of the child. This article deals with the importance of clinical ethics to avoid legal and moral showdowns and discusses accepted moral practice in this difficult area.
Lors de l’hospitalisation inattendue de leur enfant en soins intensifs néonatals, les parents vivent plusieurs émotions intenses et éprouvent un sentiment profond d’incertitude, voire d’angoisse. Les résultats préliminaires d’une revue de littérature permettent de documenter les besoins des parents de nouveau-nés prématurés en fin de vie admis en soins intensifs. Le soutien offert par les professionnels est essentiel. Les besoins d’information et d’écoute constituent des éléments fondamentaux à cette expérience.
Midwifery students with perinatal palliative care education develop a skillset to provide holistic midwifery care to women and families who are experiencing stillbirth or life-limiting fetal diagnoses. This paper presents a model of perinatal palliative care in a United States midwifery education program. By utilizing evidence based practices and national programs, perinatal palliative care can be threaded through midwifery curricula to achieve international standards of practice and competencies. Most importantly, enhancing perinatal palliative care education will better prepare future midwives for when a birth outcome is not what was expected at the outset of a pregnancy.
BACKGROUND: Previous studies on renal oligohydramnios (ROH) report highly variable outcome and identify early onset of ROH and presence of extrarenal manifestations as predictors of adverse outcome in most cases. Data on termination of pregnancy (TOP) and associated parental decision-making processes are mostly missing, but context-sensitive for the interpretation of these findings. We provide here a comprehensive analysis on the diagnosis, prenatal decision-making and postnatal clinical course in all pregnancies with ROH at our medical centre over an 8-year period.
METHODS: We report retrospective chart review data on 103 consecutive pregnancies from 2008 to 2015 with a median follow-up of 554 days.
RESULTS: After ROH diagnosis, 38 families opted for TOP. This decision was associated with onset of ROH (p < 0.001), underlying renal disease (p = 0.001) and presence of extrarenal manifestations (p = 0.02). Eight infants died in utero and 8 cases were lost to follow-up. Of the 49 liveborn children, 11 received palliative and 38 underwent active care. Overall survival of the latter group was 84.2% (n = 32) corresponding to 31% of all pregnancies (32 out of 103) analysed. One third of the surviving infants needed renal replacement therapy during the first 6 weeks of life.
CONCLUSIONS: Over one third of pregnancies with ROH were terminated and the parental decision was based on risk factors associated with adverse outcome. Neonatal death was rare in the actively treated infants and the overall outcome promising. Our study illustrates that only careful analysis of the whole process, from prenatal diagnosis via parental decision-making to postnatal outcome, allows sensible interpretation of outcome data.
Le 2 août 2005, une soignante signale la présence de 353 fœtus et enfants mort-nés dans la chambre mortuaire de l’hôpital Saint-Vincent-de-Paul à Paris. L’émotion est considérable. En une semaine, l’hôpital ne reçoit pas moins de 522 appels de parents affolés y ayant séjourné. En plein cœur de l’été et des congés annuels, l’administration hospitalière convoque tous les chefs de services dans leurs...
The challenge of decision making in end-of-life scenarios is exacerbated when the patient is a newborn and in a low-income setting. The principle of proportionate care is a helpful guide but needs to be applied. The complex interplay of benefit, burden, and cost of various treatments all need to be considered. In patients with severe neonatal encephalopathy, prognosis can be hard to determine, and a team approach to decision making can help. In low-income settings, or where there are limited resources, the ideal care needs to be incarnated in the real context. Issues of social justice also arise as finite resources need to be used prudently.
SUMMARY: Decisions regarding medical care become difficult when the patient is a seriously ill newborn baby. In the developing world, scarce medical facilities and minimal economic resources also limit possible treatment options. The Catholic Church offers practical ethical principles which can help the medical team and family to strive to do what is morally best in these difficult situations.
The Perinatal Grief Intensity Scale (PGIS) was developed for clinical use to identify and predict intense grief and need for follow-up after perinatal loss. This study evaluates the validity of the PGIS via its ability to predict future intense grief based on a PGIS score obtained early after a loss. A prospective observational study was conducted with 103 international, English-speaking women recruited at hospital discharge or via the internet who experienced a miscarriage, stillbirth, or neonatal death within the previous 8 weeks. Survey data were collected at baseline using the PGIS and the Perinatal Grief Scale (PGS). Follow-up data on the PGS were obtained 3 months later. Data analysis included descriptive statistics, Cronbach's alpha, receiver operating characteristic curve analysis, and confirmatory factor analysis.
Cronbach's alphas were =0.70 for both instruments. PGIS factor analysis yielded three factors as predicted, explaining 57.7% of the variance. The optimal cutoff identified for the PGIS was 3.535. No difference was found when the ability of the PGIS to identify intense grief was compared to the PGS (p = 0.754). The PGIS was not inferior to the PGS (AUC = 0.78, 95% CI 0.68–0.88, p < 0.001) in predicting intense grief at the follow-up. A PGIS score = 3.53 at baseline was associated with increased grief intensity at Time 2 (PGS: OR = 1.97, 95% CI 1.59–2.34, p < 0.001).
The PGIS is comparable to the PGS, has a lower response burden, and can reliably and validly predict women who may experience future intense grief associated with perinatal loss.