Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams.

CONTEXT: Palliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently encountered and can pose several clinical and ethical challenges for health care teams and families. OBJECTIVES: Our study aimed to describe CDS requests and practices of patients receiving specialized pediatric palliative care in France since its legalization in 2016. METHODS: We conducted a nationwide multicentric, descriptive, retrospective study using a self-report questionnaire completed by all Pediatric Palliative Care (PPC) Teams that were involved in a CDS case between January 2017 and December 2019. RESULTS: Six PPC teams had cared for six patients that had requested CDS, predominantly male adolescents/young adults diagnosed with a solid tumour. The refractory symptoms were diverse (pain, bleeding, and sensory loss) and always coupled with psycho-existential suffering. Each request was analyzed in multidisciplinary collegial meetings. Parental consent was always obtained regardless of age. Sedation typically required the use of multiple drugs including Midazolam (n = 5 cases), Chlorpromazine (n = 3), Ketamine (n = 2), and Propofol (n = 2). Despite close monitoring, achieving a satisfactory level of deep sedation was challenging and most patients unexpectedly awoke during CDS. Death occurred between 27 and 96 hours after induction. CONCLUSION: Managing patient-requested CDS in pediatrics is challenging due to its rarity, multi-factorial refractory symptoms and drug tolerance despite polytherapy. Few recommendations exist to guide CDS practice for pediatricians. Further studies investigating pediatric CDS practices across various cultural and legal settings, refractory symptom management and specific pharmacology are warranted.

Platelet transfusions in haematologic malignancies in the last six months of life.

BACKGROUND AND OBJECTIVES: Practices in end-of-life platelet transfusions in haematologic malignancies are variable. Our aim was to describe the platelet transfusion burden and parameters linked to this indication in such a setting and thereby contribute to defining optimal practices. MATERIALS AND METHODS: From July 2015 to December 2016, all consecutive deceased adult patients with a haematologic malignancy receiving a platelet transfusion in the last 6 months of their life from the Etablissement Français du Sang Bourgogne Franche-Comté were included retrospectively. The outcome criteria were changes in the number of platelet transfusions, percent platelet recovery, platelet transfusion interval, reported bleeding with its grade and recipient adverse events in the last 6 months of life. RESULTS: Among the 1125 patients monitored, 119 were included in our study. Bleeding prophylaxis (versus treatment) was the reason for 55% of transfusions. 18% of platelet concentrates (n = 1999) were transfused during the last two weeks of life. As death approached, the transfusion and haemorrhage burden increased (P < 0·0001 in both cases), whereas platelet recovery and transfusion interval decreased (P = 0·02 in both cases). Recipient adverse events were rare (0·6%) and of minor severity. CONCLUSION: In end-of-life transfused patients with haematologic malignancies, approaching death is associated with an increased number of platelet transfusions and bleeding events, while platelet recovery and transfusion intervals are reduced. Such findings, together with further evaluations, may contribute to informing best practices for these patients.

Bereavement care interventions for children under the age of 18 following the death of a sibling: a systematic review.

BACKGROUND: Childhood bereavement after sibling death is common, but often unrecognized. The psychosomatic and socioeconomic outcomes of bereaved children can be compromised if appropriate care is unavailable during the formative years leading into adulthood. AIM: This review aims to describe the methods, structures and procedures of bereavement care for children and adolescents after the loss of a sibling, and the impact on the families benefiting from these interventions. DESIGN: A systematic review without restriction on study design was conducted. DATA SOURCES: Four databases (MEDLINE, PsycINFO, EMBASE, Cochrane Library) were searched for articles published from 2000 to 2019. The search was conducted according to PRISMA guidelines and the protocol is registered on PROSPERO under number CRD42019124675. Articles were assessed against eligibility criteria by both authors, and quality was appraised using CASP checklists and NHMRC grading guidelines. RESULTS: Twenty-three studies met inclusion criteria. Bereavement care was most often accessed by children ages 6-18 who lost a sibling to cancer 6-12 months prior. The interventions were typically group sessions or weekend camps, run predominantly by unpaid staff from a variety of backgrounds. Some staff members received priori specific training. Grief education is taught through mediated discussion and bereavement-centered activities balanced with playful and relaxed activities. Several services have effectuated evaluations of their interventions, and preliminary results show a positive effect for families. CONCLUSION: Existing literature most likely gives an incomplete picture of appropriate childhood bereavement care, and many interventions possibly remain unpublished or published in other non-scientific sources. An effective response to childhood grief would involve collaboration between medical resources and community services, reinforced through the development of outreach and training programs.

[End-of-life in specialized medical pediatrics department: A French national survey]. / Fin de vie en services pédiatriques hospitaliers spécialisés : étude nationale.

AIMS: In France, most of children die in the hospital. This national survey aimed to achieve better understanding of end-of life care in specialized medical pediatrics departments for children facing the end-of-life, identify the available resources, put forward the difficulties encountered by professionals and describe end-of-life paths of children who died in these departments. MATERIAL AND METHODS: This study is based on a nationwide survey conducted among all existing specialized medical pediatrics departments (onco-haematology, neurology, reanimation) in France in 2015. RESULTS: Among 94 specialized medical pediatrics departments in France, 53 participated in our survey (response rate=56%). At the time of the survey, 13% of inpatients were facing the end-of-life. Regarding training, 13% of departments did not have personnel trained in palliative care and 21% did not set up any professional support. However, when taking care of a child's end of life in 2014, 77% of these departments solicited a regional resource team of pediatric palliative care. This survey helps describe 225 end-of-life paths of children decease of a terminal illness in the specialized pediatrics departments. Seventy-two percent suffered from refractory symptoms before their death, 64% were concerned by a terminal sedation and 75% by a limitation of life-sustaining treatment decision. CONCLUSION: End-of-life care is a reality for specialized pediatrics departments. The frequency of major and refractory symptoms often requires the completion of sedation. The resources of service are acceptable but some deficiencies have been noted especially concerning training and support for caregivers, adaptation of premises or family support.

Place of death of children with complex chronic conditions: cross-national study of 11 countries.

Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys. CONCLUSION: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: • There is a scarcity of population-level studies investigating where children with CCC die in different countries. • Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : • There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common. • In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC.