Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; intensive care unit; assisted ventilation; pediatric intensive care unit; intensive care; therapy; pediatrician; prevalence; functional status; disability; special situation for pharmacovigilance
Our study aimed to evaluate the prevalence and predictive factors of withholding life support for children suffering from severe neurological impairment before admission to the pediatric intensive care unit (PICU). Method: Children under 18 years of age with severe neurological impairment, who were hospitalized between January 2006 and December 2016, were included in this retrospective study. They were allocated to a withholding group or a control group, depending on whether life support was withheld or not, before admission to the PICU. Results: Overall, 119 patients were included. At admission to the PICU, the rate of withholding life support was 10 % (n = 12). Predictive factors were: (1) a previous stay in the PICU (n = 11; 92 %, p<0.01, odds ratio [OR]: 14 [2-635], p = 0.001); (2) the need for respiratory support (n = 5; 42 %, p = 0.01, OR: 6 [1-27], p = 0.01); (3) the need for feeding support (n = 10; 83 %, p = 0.01, OR: 10 [2-100], p = 0.001); and (4) a higher functional status score (FSS: 16 [12.5-19] vs. 10 [8-13], p<0.01). Conclusion: The withholding of life support for children suffering from severe neurological impairment appeared limited in our pediatric department. The main predictor was at least one admission to the PICU, which raised the question of the pediatrician's role in the decision to withhold life support.
Duval C; Porcheret F; Toulouse J; Alexandre M; Roulland C; Viallard ML; Brossier D
Archives de Pediatrie
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.arcped.2023.09.014" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.09.014</a>
Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams
Deep Sedation; Pediatrics; Terminal Care; Adolescent; Child; Female; Humans; Hypnotics and Sedatives/tu [Therapeutic Use]; Male; Palliative Care; Retrospective Studies
Abstract 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.
Ridley A; Vial-Cholley E; Robert G; Jounis-Jahan F; Lervat C; Betremieux P; Viallard ML; Frache S; Cojean N
Journal of Pain and Symptom Management
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.006</a>
Integrating a Palliative Approach into the Healthcare provided by the French-African Pediatric Oncology Group's Pilot Units. Insights from a 3-year Training Program
Child; Palliative care; Adolescent; Child Preschool; Humans; Infant; Infant Newborn; Pediatrics; France; Palliative Care; Pediatrics/education; International Cooperation; Pain Management; Training; Africa; Oncology; Patient Care Team; Education Medical Continuing/methods/organization & administration; French-speaking Africa; Medical Oncology/education
Working alongside local stakeholders, members of the French-African Pediatric Oncology Group developed a 3-year program to train pediatric oncology teams from 15 French-speaking countries in Africa in using analgesics and providing palliative care. This program was rolled out in three phases: initial training, in situ assessment, and advanced training in selected topics. To access this program, multidisciplinary teams had to come up with a project to improve their existing palliative care and pain management practices, and commit themselves to implementing it. All the teams invited agreed to take part in the program, which explicitly broached a subject that is often avoided in oncology teaching. The first phase was rolled out in 2017, with 65 trainees from 19 units attending one of three sessions held in Dakar, Senegal, Abidjan, Cote d'Ivoire, and Rabat, Morocco. The subsequent assessment revealed that only half the teams had started to implement their projects. The advanced training phase was therefore adjusted accordingly. A collective training session held in Marseille was attended by 15 trainees from seven teams whose projects were already underway, while in situ mentoring was provided for six other teams, through French-African twinnings in four cases. The length and openness of the program meant that we were able to identify and share the units' diverse realities, and fine-tune their projects accordingly, as well as plan ways of continuing the training both locally and collectively. Copyright © 2020 French Society of Pediatrics
Edan C; Yao AJJ; Hessissen L; Moreira C; Viallard ML; Poulain P; Calmanti S; Thinlot C; Aubier F; Doucot MS; Gagnepain-Lacheteau A; Patte C
Archives de Pediatrie
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.arcped.2020.12.002" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2020.12.002</a>
Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams
Benzodiazepines; Continuous Deep Sedation; Decision Making; Palliative Care Pediatrics; Sedation
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 healthcare 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, 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.
Ridley A; Vial-Cholley E; Robert G; Jounis-Jahan F; Lervat C; Viallard ML; Frache S; Cojean N
Journal of Pain and Symptom Management
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.006</a>
The role of perinatal palliative care following prenatal diagnosis of major, incurable fetal anomalies: a multicentre prospective cohort study
advance care planning; fetal anomaly; incurable anomaly; life-limiting fetal diagnosis; perinatal palliative care
OBJECTIVE: To describe prenatal decision-making processes and birth plans in pregnancies amenable to planning perinatal palliative care. DESIGN: Multicentre prospective observational study. SETTING: Nine Multidisciplinary Centres for Prenatal Diagnosis of the Paris-Ile-de-France region. POPULATION: All cases of major and incurable fetal anomaly where limitation of life-sustaining treatments for the neonate was discussed in the prenatal period between 2015 and 2016. METHODS: Cases of congenital defects amenable to perinatal palliative care were prospectively included in each centre. Prenatal diagnosis, decision-making process, type of birth plan, birth characteristics, pregnancy and neonatal outcome were collected prospectively and anonymously. MAIN OUTCOME MEASURE: Final decision reached following discussions in the antenatal period. RESULTS: We identified 736 continuing pregnancies with a diagnosis of a severe fetal condition eligible for TOP. Perinatal palliative care was considered in 102/736 (13.9%) pregnancies (106 infants); discussions were multidisciplinary in 99/106 (93.4%) cases. Prenatal birth plans involved life-sustaining treatment limitation and comfort care in 73/736 (9.9%) of the pregnancies. The main reason for planning palliative care at birth was short-term inevitable death in 39 cases (53.4%). 76/106 (71.7%) infants were born alive. 18/106 (17%) infants were alive at last follow-up, including 4 with a perinatal palliative care birth plan. CONCLUSIONS: Only a small proportion of severe and incurable fetal disorders were potentially amenable to limitation of life-sustaining interventions. Perinatal palliative care may not be considered as an universal alternative to termination of pregnancy.
de Barbeyrac C; Roth P; Noël C; Anselem O; Gaudin A; Roumegoux C; Azcona B; Castel C; Noret M; Letamendia E; Stirnemann J; Ville Y; Lapillonne A; Viallard ML; Kermorvant-Duchemin E
Bjog
2021
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<a href="http://doi.org/10.1111/1471-0528.16976" target="_blank" rel="noreferrer noopener">10.1111/1471-0528.16976</a>
The role of the neuropediatrician in pediatric intensive care unit: Diagnosis, therapeutics and major participation in collaborative multidisciplinary deliberations about life-sustaining treatments' withdrawal
Life sutaining treatment;Neuropediatrician;Palliative care;Pediatric intensive care unit;Withdrawal/withholding treatment
BACKGROUND: In Pediatric Intensive Care Unit (PICU) two types of population require the intervention of neuropediatricians (NP): chronic brain diseases' patients who face repetitive and prolonged hospitalizations, and patients with acute brain failure facing the risk of potential neurologic sequelae, and both conditions may result in a limitation of life-sustaining treatments (LLST) decision. OBJECTIVE: To assess NP's involvement in LLST decisions within the PICU of a tertiary hospital. METHOD: Retrospective study of medical reports of patients hospitalized during 2014 in the Necker-Hospital PICU. Patients were selected using keywords ("cardiorespiratory arrest", "death", "withdrawal of treatment", "palliative care", "acute brain failure", or "chronic neurological disease"), and/or if they were assessed by a NP during the hospitalization. Demographic and medical data were analysed, including the NP's assessment and data about Collaborative Multidisciplinary Deliberation (CMD) to discuss potential LLST. RESULTS: Among 1160 children, 274 patients were included and 142 (56%) were assessed by a NP during their hospitalization for diagnosis (n = 55) and/or treatment (n = 95) management. NP was required for 59%-100% of patients with neurological acute failure, and for 14-44% of patients with extra neurological failure. A LLST decision was taken after a CMD for 27 (9.8%) of them, and a NP was involved in 19/27 (70%) of these decisions that occurred during the hospitalization (n = 19) or before (n = 8).12 patients died thereafter the LLST decision (40% of the 30 dead patients). CONCLUSION: NP are clearly involved in the decision-process of LLST for patients admitted in PICU, claiming for close collaboration to improve current practices and the quality of the care provided to children.
Toulouse J;Hully M;Brossier D;Viallard ML;de Saint Blanquat L;Renolleau S;Kossorotoff M;Desguerre I
European Journal of Paediatric Neurology
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.ejpn.2018.09.002" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2018.09.002</a>
The role of the neuropediatrician in pediatric intensive care unit: Diagnosis, therapeutics and major participation in collaborative multidisciplinary deliberations about life-sustaining treatments' withdrawal
Life sutaining treatment;Neuropediatrician;Palliative care;Pediatric intensive care unit;Withdrawal withholding treatment
BACKGROUND: In Pediatric Intensive Care Unit (PICU) two types of population require the intervention of neuropediatricians (NP): chronic brain diseases' patients who face repetitive and prolonged hospitalizations, and patients with acute brain failure facing the risk of potential neurologic sequelae, and both conditions may result in a limitation of life-sustaining treatments (LLST) decision. OBJECTIVE: To assess NP's involvement in LLST decisions within the PICU of a tertiary hospital. METHOD: Retrospective study of medical reports of patients hospitalized during 2014 in the Necker-Hospital PICU. Patients were selected using keywords ("cardiorespiratory arrest", "death", "withdrawal of treatment", "palliative care", "acute brain failure", or "chronic neurological disease"), and/or if they were assessed by a NP during the hospitalization. Demographic and medical data were analysed, including the NP's assessment and data about Collaborative Multidisciplinary Deliberation (CMD) to discuss potential LLST. RESULTS: Among 1160 children, 274 patients were included and 142 (56%) were assessed by a NP during their hospitalization for diagnosis (n = 55) and/or treatment (n = 95) management. NP was required for 59%-100% of patients with neurological acute failure, and for 14-44% of patients with extra neurological failure. A LLST decision was taken after a CMD for 27 (9.8%) of them, and a NP was involved in 19/27 (70%) of these decisions that occurred during the hospitalization (n = 19) or before (n = 8).12 patients died thereafter the LLST decision (40% of the 30 dead patients). CONCLUSION: NP are clearly involved in the decision-process of LLST for patients admitted in PICU, claiming for close collaboration to improve current practices and the quality of the care provided to children.
Toulouse J;Hully M;Brossier D;Viallard ML;de Saint Blanquat L;Renolleau S;Kossorotoff M;Desguerre I
European journal of paediatric neurology : EJPN : official journal of the European Paediatric Neurology Society
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.ejpn.2018.09.002" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2018.09.002</a>
Some general considerations of a human-based medicine's palliative approach to the vulnerability of the multiply disabled child before the end of life
disabled children; neurologic
Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must be questioned in this matter is not only the meaning of the clinical, social, and human approach that is implemented, but also its spirit. The aim of medicine is double: to offer a technoscientific capacity (to cure as much as it is possible and always relieve suffering) and guarantee the meaning and value of the child's human and social capacities. We suggest the importance of a medicine always as care-giving whose aim(s) can be either curative or palliative, or even both at the same time with possibilities for moving back and forth between each one, is easily understandable by all professional groups and patients. It is not at the time of the death, at the last moments, that we will be able to introduce what could have given meaning, spirit and comfort in life. It is very early in the life, in the approach of care, to precisely preserve a meaning of life and to take adapted and shared care as a precious tool that we will propose to the patients, to the parents, and to the professionals. Palliative medicine can support a caring and human approach that takes account of the handicapped child's vulnerabilities not only at the end of his life, but throughout his/her life. The palliative approach and reasoning approach requires a specific, adapted training and the development of shared knowledge. Without giving up the indisputable contributions of the Evidence-Based Medicine (EBM), it is necessary to develop, in a scientific way, what we could call Human-Based Medicine (HBM).
2014-03
Viallard ML
Culture, Medicine And Psychiatry
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1007/s11013-013-9355-6" target="_blank" rel="noreferrer">10.1007/s11013-013-9355-6</a>
[Pediatric palliative care: A national survey of French pediatric residents' knowledge, education, and clinical experience]
Education; continuing; Medical; professional issues
BACKGROUND: The need for educational training of healthcare professionals in palliative care is an important issue. Training and practice of pediatric residents in the field of pediatric palliative care (PPC) has never been assessed, although the organization of the medical curriculum in France is currently being revised. MATERIALS AND METHODS: This study presents a national survey of pediatric residents, using a computerized anonymous questionnaire. Four different areas were studied: epidemiological data, theoretical and practical knowledge, education, and clinical experience in PPC. RESULTS: The response rate was 39% (n=365/927). Whatever their age or regional location, 25% of residents did not know any details of the French law concerning patients' rights and the end of life. Experience with PPC starts very early since 77% of the first-year pediatric residents experienced at least one child in a palliative care and/or end-of-life situation. During their entire residency, 87% of the residents had experience with PPC and nearly all (96%) end-of-life care. Furthermore, 76% had participated in announcing palliative care (cancer, ICU, etc.) or a serious illness, and 45% had met and discussed with bereaved parents. Furthermore, while 97% of the pediatric residents received training in adult palliative care, mainly before their residency, only 60% received specific PPC training. DISCUSSION AND CONCLUSION: Ninety-six percent of all French pediatric residents encountered a PPC situation during their residency. That 77% of them had experienced PPC during their first year of residency shows the importance of early training in PPC for pediatric residents. Furthermore, this study points out that there is a significant lack in PPC training since 40% of all residents in the study received no specific PPC training. Progress in education remains insufficient in the dissemination of knowledge on the legal framework and concepts of palliative medicine: while the medical curriculum is being revised, we suggest that training in medical ethics and PPC should be introduced very early and systematically.
2014-08
Lefeubvre C; Viallard ML; Schell M
Archives De Pediatrie
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.arcped.2014.05.012" target="_blank" rel="noreferrer">10.1016/j.arcped.2014.05.012</a>
Some general considerations of a human-based medicine's palliative approach to the vulnerability of the multiply disabled child before the end of life
Disabled Children/px [Psychology]; Palliative Medicine/st [Standards]; Terminal Care/st [Standards]; Vulnerable Populations/px [Psychology]; Child; Humans; Palliative Medicine/mt [Methods]; Terminal Care/mt [Methods]
Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must be questioned in this matter is not only the meaning of the clinical, social, and human approach that is implemented, but also its spirit. The aim of medicine is double: to offer a technoscientific capacity (to cure as much as it is possible and always relieve suffering) and guarantee the meaning and value of the child's human and social capacities. We suggest the importance of a medicine always as care-giving whose aim(s) can be either curative or palliative, or even both at the same time with possibilities for moving back and forth between each one, is easily understandable by all professional groups and patients. It is not at the time of the death, at the last moments, that we will be able to introduce what could have given meaning, spirit and comfort in life. It is very early in the life, in the approach of care, to precisely preserve a meaning of life and to take adapted and shared care as a precious tool that we will propose to the patients, to the parents, and to the professionals. Palliative medicine can support a caring and human approach that takes account of the handicapped child's vulnerabilities not only at the end of his life, but throughout his/her life. The palliative approach and reasoning approach requires a specific, adapted training and the development of shared knowledge. Without giving up the indisputable contributions of the Evidence-Based Medicine (EBM), it is necessary to develop, in a scientific way, what we could call Human-Based Medicine (HBM).
Viallard ML
Culture, Medicine & Psychiatry
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s11013-013-9355-6" target="_blank" rel="noreferrer">10.1007/s11013-013-9355-6</a>
Palliative care in children with spinal muscular atrophy type 1: How do they die? Results from a French multicentric study (National Hospital clinical Research Program)
clinical research; palliative therapy; Werdnig Hoffmann disease; 50-48-6 (amitriptyline); 52-26-6 (morphine); 57-27-2 (morphine); 549-18-8 (amitriptyline); Amitriptyline; benzodiazepine derivative; Child; Clinical Article; clinical practice; Diagnosis; Drug Therapy; Female; follow up; Human; infant; Intensive care unit; Interview; Male; Morphine; multicenter study; nasogastric tube; Noninvasive Ventilation; psychologist; quantitative analysis; Resuscitation; time of death
Objective: The national Hospital Clinical Research Program (PHRC) called Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA 1) was conducted to depict palliative practices in that fatal disease, in which death up to now occurs few weeks or months after the diagnosis. We here report data about the conditions of death for the patients included. Methods: In this French multicentric study, patients were included from june 2012 to june 2016. Parents and physicians filled in a specific health book during the follow up, the physician in charge filled in a survey concerning the patient's management over the last 48 hours before death, then a semidirected interview of the parents was conducted by a trained psychologist 6 to 18 months after the child's death. We here report the quantitative analysis of data obtained from the survey about patient's management around death. Results: 38 patients were included in the study (17 centres), data were available for 36 dead patients. Median age at inclusion was 3 months (0,6-10,4), death occurred at a median 5,5 month of age (1,5-16,4), i.e a median follow-up of 2 months (0,2-12,8). 39% of patients died at home, 6% in an intensive care unit. At the time of death, patients received morphine (56%), benzodiazepines (39%), amitriptyline (39%). Treatments were given through a nasogastric tube (83%), and oxygenotherapy was delivered (76%). 6% patients received noninvasive ventilation at the time of death. No resuscitation recommendations had been prepared for most patients (97%), written in 85%, after a multidisciplinary meeting in most cases (79%). Conclusion: Our data confirm current knowledge about natural outcome in SMA 1, death occurring very soon after the diagnosis, claiming for an effective palliative management of the patients, including the involvement of parents in medical care at home.
Hully M; Barnerias C; Vanesse S; Viallard ML; Desguerre I
European Journal Of Paediatric Neurology
2017
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<a href="http://doi.org/10.1016/j.ejpn.2017.04.1310" target="_blank" rel="noreferrer">10.1016/j.ejpn.2017.04.1310</a>