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: 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.
This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the physical distance to the child, medical uncertainties, and upcoming decisions. Even though they are considered to be parents (assigned parenthood), they cannot act as primary caregivers. Instead, they depend on professional instructions for access and care. Embodied parenthood can be experienced only at the end-of-life, that is, during the dying trajectory and after the child's death. Professionally supporting parents during this compressed process (from assigned and distant to embodied parenthood) contributes fundamentally to their perception of being a family and supports their mourning. This calls for the further establishment of palliative and bereavement care concepts in neonatology.
This article reviews the current state of psychological, social, and economic research into the impact of stillbirth on families. The authors argue that whereas the knowledge we have of the experiential aspects of stillbirth is increasing, there is still much that remains to be uncovered especially in respect of the impact that seeing the baby may have on mental health. Moreover, the experience of particular social groups merits further work, most notably regarding same-sex couples and surrogates, mothers and fathers drawn from Black and Minority Ethnic groups as well as those from lower socio-economic groups. Particular attention needs to be paid to the economic impact of stillbirth on families, whether this is from a perspective that focuses on the family or the wider society in which they live.
Third-trimester stillbirth affects approximately 2.6 million women worldwide each year. Although most stillbirths (98%) occur in low- and middle-income countries, most of the research on the impact of stillbirth and bereavement care has come from high-income countries. The impact of stillbirth ranges from stigma to disenfranchised grief, broken relationships, clinical depression, chronic pain, substance use, increased use of health services, employment difficulties, and debt. Appropriate bereavement care following a stillbirth is essential to minimise the negative socio-economic impact on parents and their families. This article presents the best practice points in stillbirth bereavement care, including taking an individualised and flexible approach. The latest published research, guidelines, and best practice points from high-income countries will be used and will highlight the gaps in the research which urgently need to be addressed. Research and investment in appropriate, respectful aftercare is needed to minimise the negative impact for parents.
OBJECTIVES: To describe the frequency of postnatal discussions about withdrawal or withholding of life-sustaining therapy (WWLST), ensuing WWLST, and outcomes of infants surviving such discussions. The authors hypothesized that such survivors have poor outcomes.
STUDY DESIGN: This retrospective review included registry data from 18 centers of the National Institute of Child Health and Human Development Neonatal Research Network. Infants born at 22-28 weeks of gestation who survived >12 hours during 2011-2013 were included. Regression analysis identified maternal and infant factors associated with WWLST discussions and factors predicting ensuing WWLST. In-hospital and 18- to 26-month outcomes were evaluated.
RESULTS: WWLST discussions occurred in 529 (15.4%) of 3434 infants. These were more frequent at 22-24 weeks (27.0%) compared with 27-28 weeks of gestation (5.6%). Factors associated with WWLST discussion were male sex, gestational age (GA) of =24 weeks, birth weight small for GA, congenital malformations or syndromes, early onset sepsis, severe brain injury, and necrotizing enterocolitis. Rates of WWLST discussion varied by center (6.4%-29.9%) as did WWLST (5.2%-20.7%). Ensuing WWLST occurred in 406 patients; of these, 5 survived to discharge. Of the 123 infants for whom intensive care was continued, 58 (47%) survived to discharge. Survival after WWLST discussion was associated with higher rates of neonatal morbidities and neurodevelopmental impairment compared with babies for whom WWLST discussions did not occur. Significant predictors of ensuing WWLST were maternal age >25 years, necrotizing enterocolitis, and days on a ventilator.
Conclusions: Wide center variations in WWLST discussions occur, especially at =24 weeks GA. Outcomes of infants surviving after WWLST discussions are poor.
D'où provient la multiplication des discours sur la vulnérabilité humaine et que faut-il en penser ? Issu d'une recherche multidisciplinaire, cet ouvrage propose les clefs pour comprendre l'origine de cette notion et les principaux modèles qui l'utilisent. Analyse sociologique des nouvelles formes de fragilités sociales, formation d'un droit des personnes vulnérables, regard anthropologique et politique sur l'usage de ces catégories sont autant d'éléments essentiels pour la compréhension de notre époque dans ses mutations profondes. Le parti pris est ici de ne pas se satisfaire d'une recension de ces multiples voix de la vulnérabilité mais d'explorer la vulnérabilité sous trois perspectives rigoureuses et complémentaires : présenter les fondements philosophiques de la notion par des synthèses (théorie des capabilités, éthique de Lévinas, Habermas ou Jonas) et un questionnement problématique fondamental ; évaluer l'apport de cette notion à l'éthique du soin et plus généralement à la pensée éthique ; écouter ce que peuvent dire de cette notion aussi bien les pratiques médicales, la clinique psychologique ou encore d'autres formes d'accompagnement de la personne en situation de fragilité.
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Associer mort et droit de la santé peut sembler déroutant. Pourtant, les années 2015 et 2016 ont été marquées par des évolutions législatives et jurisprudentielles majeures qui traduisent l'appréhension de la fin de la vie par le droit de la santé. La loi n° 2016-87 du 2 février 2016 a d'ailleurs renforcé l'obligation des médecins de prendre en compte la volonté du malade, ce qui a conduit les auteurs à analyser plus largement les limites juridiques du respect de la volonté de chacun à l'épreuve de la mort. La volonté est ainsi retenue comme notion centrale dans la rencontre entre la mort et le droit de la santé. Le juriste connaît mieux le consentement que la volonté. Le consentement est déterminant dans la relation de soins mais cette dernière implique souvent le corps affaibli, souffrant et diminué d'une personne qui n'est plus en mesure d'indiquer ce qu'elle souhaite. Par conséquent, à défaut de consentement, c'est la volonté du patient qui devra être recherchée. La volonté exprimée du vivant perdure après la mort dans les obligations laissées aux descendants de respecter la mémoire du défunt et ses choix. Aussi l'ouvrage se partage-t-il entre la volonté du vivant et celle du "de cujus". La volonté du vivant face à la mort peut concerner sa propre mort ou bien celle de tiers. La volonté du "de cujus" s'exprime, quant à elle, à l'épreuve de l'usage de son cadavre et de l'intérêt des tiers. (4ème couv.).
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Les évolutions législatives au cours de la dernière décennie ont permis l’émergence d’un accompagnement en soins palliatifs dès la naissance pour les nouveau-nés non viables soit du fait de malformations incurables, soit du fait de leur extrême prématurité. Cette prise en charge est centrée sur le confort de l’enfant et propose aux parents d’être acteurs de cet accompagnement. Accompagner ces enfants en soins palliatifs permet de les ancrer dans l’humanité ; cela permet aux parents de se sentir reconnus comme parents ; cela permet aux soignants de réaliser leur vocation de soin avec dignité et empathie ; cela permet enfin de préparer l’avenir en diminuant le risque de deuil pathologique et de survenue d’un enfant de remplacement. L’accompagnement en soins palliatifs pour les nouveau-nés non viables à la naissance est une pratique nouvelle en salle de naissance. Elle peut heurter certains soignants non formés au deuil périnatal, qui vivent la critique des pratiques antérieures comme une agression. Elle permet cependant de sortir des non-dits et des pratiques aux limites du cadre légal. Le volet Éthique de l’enquête EPIPAGE 2 qui débute en 2011 devrait permettre de faire un état des lieux des pratiques concernant la gestion de la mort en salle de naissance en France.