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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
A name given to the resource
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
The topic of the resource
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
-
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
December 2022 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
December List 2022
URL Address
<a href="http://doi.org/10.1186/s12904-022-01078-0" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-022-01078-0</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
Expert Survey on Coverage and Characteristics of Pediatric Palliative Care in Europe - A Focus on Home Care
Publisher
An entity responsible for making the resource available
BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child; Europe; Health Care Surveys; Health care quality; access; and evaluation; Home Care Services; Home Care Services/sn [Statistics & Numerical Data]; Home care services; Humans; Palliative Care; Palliative Care/sn [Statistics & Numerical Data]; Palliative care; Pediatrics; Pediatrics/sn [Statistics & Numerical Data]
Creator
An entity primarily responsible for making the resource
Wager J; Kubek LA; Brenner M; Calmanti S; Doyle C; Lovgren M; Kreicbergs U; Kremer L; Le Moine P; Robert G; Schuiling-Otten M; Schroder-Back P; Verhagen E; Zernikow B
Description
An account of the resource
BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries. METHODS: Online survey with in-country experts from N = 33 European countries. RESULTS: Pediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service. CONCLUSIONS: Pediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed. Copyright © 2022. The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-022-01078-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-01078-0</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
access
and evaluation
BMC Palliative Care
Brenner M
Calmanti S
Child
December List 2022
Doyle C
Europe
Health Care Quality
Health Care Surveys
home care services
Home Care Services/sn [statistics & Numerical Data]
Humans
Kreicbergs U
Kremer L
Kubek LA
Le Moine P
Lövgren M
Palliative Care
Palliative Care/sn [Statistics & Numerical Data]
Pediatrics
Pediatrics/sn [statistics & Numerical Data]
Robert G
Schroder-Back P
Schuiling-Otten M
Verhagen E
Wager J
Zernikow B