1
40
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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May 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.006" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.006</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Deep Sedation; Pediatrics; Terminal Care; Adolescent; Child; Female; Humans; Hypnotics and Sedatives/tu [Therapeutic Use]; Male; Palliative Care; Retrospective Studies
Creator
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Ridley A; Vial-Cholley E; Robert G; Jounis-Jahan F; Lervat C; Betremieux P; Viallard ML; Frache S; Cojean N
Description
An account of the resource
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.
Identifier
An unambiguous reference to the resource within a given context
<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>
Rights
Information about rights held in and over the resource
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).
2023
Adolescent
Bétrémieux P
Child
Cojean N
Deep Sedation
Female
Frache S
Humans
Hypnotics and Sedatives/tu [Therapeutic Use]
Jounis-Jahan F
Journal of Pain and Symptom Management
Lervat C
Male
May List 2023
Palliative Care
Pediatrics
Retrospective Studies
Ridley A
Robert G
Terminal Care
Vial-Cholley E
Viallard ML
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
January 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.006" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.006</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Benzodiazepines; Continuous Deep Sedation; Decision Making; Palliative Care Pediatrics; Sedation
Creator
An entity primarily responsible for making the resource
Ridley A; Vial-Cholley E; Robert G; Jounis-Jahan F; Lervat C; Viallard ML; Frache S; Cojean N
Description
An account of the resource
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.
Identifier
An unambiguous reference to the resource within a given context
<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>
Rights
Information about rights held in and over the resource
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).
2022
Benzodiazepines
Cojean N
Continuous Deep Sedation
Decision Making
Frache S
January List 2023
Jounis-Jahan F
Journal of Pain and Symptom Management
Lervat C
Palliative Care Pediatrics
Ridley A
Robert G
Sedation
Vial-Cholley E
Viallard ML
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Place Of Death Of Children With Complex Chronic Conditions: Cross-national Study Of 11 Countries
Publisher
An entity responsible for making the resource available
European Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Cause Of Death; Palliative Therapy; Adolescent; Belgium; Cancer Epidemiology; Child; Controlled Study; Cultural Value; Death Certificate; Female; Girl; Human; Logistic Regression Analysis; Major Clinical Study; Male; Malignant Neoplastic Disease; Mexico; Neuromuscular Disease; South Korea; Sweden
Creator
An entity primarily responsible for making the resource
Hakanson C; Ohlen J; Kreicbergs U; Cardenas-Turanzas M; Wilson DM; Loucka M; Frache S; Giovannetti L; Naylor W; Rhee Y; Ramos MR; Teno J; Beernaert K; Deliens L; Houttekier D; Cohen H
Description
An account of the resource
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.(Table presented.) Copyright © 2017 Springer-Verlag Berlin Heidelberg
Identifier
An unambiguous reference to the resource within a given context
10.1007/s00431-016-2837-0
Rights
Information about rights held in and over the resource
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).
2017
Adolescent
Beernaert K
Belgium
Cancer Epidemiology
Cardenas-Turanzas M
Cause Of Death
Child
Cohen H
Controlled Study
Cultural Value
Death Certificate
Deliens L
European Journal of Pediatrics
Female
Frache S
Giovannetti L
Girl
Hakanson C
Houttekier D
Human
Kreicbergs U
Logistic Regression Analysis
Loucka M
Major Clinical Study
Male
Malignant Neoplastic Disease
March 2017 List
Mexico
Naylor W
Neuromuscular Disease
Ohlen J
Palliative Therapy
Ramos MR
Rhee Y
South Korea
Sweden
Teno J
Wilson DM
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
[end-of-life In Specialized Medical Pediatrics Department: A French National Survey]
Publisher
An entity responsible for making the resource available
Archives Pédiatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Accompagnement de fin de vie; End-of-life accompanying; Intensive care; Neurologie; Neurology; Onco-hematology; Onco-hématologie; Pediatric palliative care; Pediatrics; Pédiatrie; Réanimation; Soins palliatifs pédiatriques
Creator
An entity primarily responsible for making the resource
Ravanello A; Desguerre I; Frache S; Hubert P; Orbach D; Aubry R
Description
An account of the resource
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.
Rights
Information about rights held in and over the resource
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).
2017
Accompagnement de fin de vie
Archives Pédiatrie
Aubry R
Desguerre I
End-of-life accompanying
Frache S
Hubert P
Intensive Care
March 2017 List
Neurologie
Neurology
Onco-hématologie
Onco-hematology
Orbach D
Pediatric Palliative Care
Pediatrics
Pédiatrie
Ravanello A
Réanimation
Soins palliatifs pédiatriques