Withholding and withdrawing treatment in pediatric intensive care. Update of the GFRUP recommendations
Infant; Child; Palliative care; Pediatric critical care; Resuscitation orders; Treatment withdrawal; Treatment withholding
In 2005, the French-speaking task force on pediatric critical and emergency care [Groupe Francophone de Réanimation et d'Urgences Pédiatriques (GFRUP)] issued recommendations on withholding and withdrawing treatments in pediatric critical care. Since then, the French Public Health Code, modified by the laws passed in 2005 and 2016 and by their enactment decrees, has established a legal framework for practice. Now, 15 years later, an update of these recommendations was needed to factor in the experience acquired by healthcare teams, new questions raised by practice surveys, the recommendations issued in the interval, the changes in legislation, and a few legal precedents. The objective of this article is to help pediatric critical care teams find the closest possible compromise between the ethical principles guiding the care offered to the child and the family and compliance with current regulations and laws.
Cremer R; de Saint Blanquat L; Birsan S; Bordet F; Botte A; Brissaud O; Guilbert J; Le Roux B; Le Reun C; Michel F; Millasseau F; Sinet M; Hubert P
Archives of Pediatrics
2021
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<a href="http://doi.org/10.1016/j.arcped.2021.03.004" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2021.03.004</a>
[French law related to patient's rights and end of life: pediatric intensive care unit's health professionals' opinions]
Child; Humans; Intensive Care Units; Palliative Care; patient care team; Terminal Care; Attitude of Health Personnel; Withholding Treatment; Resuscitation Orders; Double Effect Principle; Suicide; Patient Rights; Pediatric; Health Surveys; France; Assisted; Health Care; Quality Assurance
INTRODUCTION AND OBJECTIVES: To identify the knowledge of caregivers of pediatric intensive care units (PICUs) on the French law related to patients' rights and end of life, their views on withholding/withdrawing life-sustaining treatment (WWLST) decisions, and their feelings about how these decisions were made and implemented. MATERIALS AND METHODS: A multicenter survey in 24 French PICUs during the fourth trimester 2010. RESULTS: One thousand three hundred and thirty-nine professional healthcare workers (1005 paramedics and 334 physicians) responded. Over 85% of caregivers had good knowledge of the WWLST decision-making processes required by law. More than 80% of caregivers accepted mechanical ventilation, hemodiafiltration, or hemodynamic support withdrawal or withholding. Nevertheless, the withdrawal of artificial nutrition and hydration generated reluctance or opposition for the majority of respondents. While paramedics' participation in the decision-making process was deemed necessary by all caregivers, paramedics found more often than physicians that they were insufficiently involved. The quality of end-of-life care was judged very positively by caregivers. The answers on how WWLST was applied suggest very different interpretations of the law. Some caregivers respect the principles of palliative care as stated in the public health code and 40% of doctors and 64% of caregivers consider it "acceptable" to hasten death if resulting from a collaborative decision-making process. CONCLUSION: This study is the first to show that caregivers of French PICUs have good knowledge of the French law concerning the end of life. Yet, there is still confusion about the limits of practice during the end-of-life period.
2014-01
de Saint Blanquat L; Cremer R; Elie C; Lesage F; Dupic L; Hubert P; pour le Groupe francophone de réanimation et urgences pédiatriques (GFRUP)
Archives De Pediatrie
2014
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Journal Article
<a href="http://doi.org/10.1016/j.arcped.2013.10.018" target="_blank" rel="noreferrer">10.1016/j.arcped.2013.10.018</a>
Communication in pediatric critical care: A proposal for an evidence-informed framework.
The aim of this investigation was to conduct a comprehensive examination of communication between parents and health care professionals (HCPs) in the pediatric intensive care unit (PICU). A secondary analysis was performed on data from 3 previous qualitative studies, which included 30 physicians, 37 nurses, and 38 parents in France and Quebec (Canada). All three studies examined a mix of cases where children either survived or died. All data referring to communication between parents (and patients when applicable) and HCPs were examined to identity themes that related to communication. Thematic categories for parents and HCPs were developed. Three interrelated dimensions of communication were identified: (1) informational communication, (2) relational communication, and (3) communication and parental coping. Specific themes were identified for each of these 3 dimensions in relation to parental concerns as well as HCP concerns. This investigation builds on prior research by advancing a comprehensive analysis of PICU communication that includes (a) cases where life-sustaining treatments were withdrawn or withheld as well as cases where they were maintained, (b) data from HCPs as well as parents, and (c) investigations conducted in 4 different sites. An evidence-informed conceptual framework is proposed for PICU communication between parents and HCPs. We also outline priorities for the development of practice, education, and research.
2014-07
Carnevale FA; Farrell C; Cremer R; Seguret S; Canoui P; Leclerc F; Lacroix J; Hubert P
Journal Of Child Health Care
2014
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Journal Article
<a href="http://doi.org/10.1177/1367493514540817" target="_blank" rel="noreferrer">10.1177/1367493514540817</a>
Parental involvement in treatment decisions regarding their critically ill child: a comparative study of France and Quebec
Child; Female; Humans; Male; Intensive Care Units; Professional-Family Relations; Communication; Paternalism; Qualitative Research; Consumer Satisfaction; Cultural Characteristics; Quebec; Preschool; infant; IM; ICU Decision Making; France; Parents/px [Psychology]; Consumer Participation/px [Psychology]; Critical Illness/th [Therapy]; Nurse's Role/px [Psychology]; Pediatric/og [Organization & Administration]; Physician's Role/px [Psychology]
OBJECTIVE: To examine whether physicians or parents assume responsibility for treatment decisions for critically ill children and how this relates to subsequent parental experience. A significant controversy has emerged regarding the role of parents, relative to physicians, in relation to treatment decisions for critically ill children. Anglo-American settings have adopted decision-making models where parents are regarded as responsible for such life-support decisions, while in France physicians are commonly considered the decision makers. DESIGN: Grounded theory qualitative methodology. SETTING: Four pediatric intensive care units (two in France and two in Quebec, Canada). PATIENTS: Thirty-one parents of critically ill children; nine physicians and 13 nurses who cared for their children. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Semistructured interviews were conducted. In France, physicians were predominantly the decision makers for treatment decisions. In Quebec, decisional authority practices were more varied; parents were the most common decision maker, but sometimes it was physicians, while for some decisional responsibility depended on the type of decision to be made. French parents appeared more satisfied with their communication and relationship experiences than Quebec parents. French parents referred primarily to the importance of the quality of communication rather than decisional authority. There was no relationship between parents' actual responsibility for decisions and their subsequent guilt experience. CONCLUSIONS: It was remarkable that a certain degree of medical paternalism was unavoidable, regardless of the legal and ethical norms that were in place. This may not necessarily harm parents' moral experiences. Further research is required to examine parental decisional experience in other pediatric settings.
2007
Carnevale FA; Canoui P; Cremer R; Farrell C; Doussau A; Seguin MJ; Hubert P; Leclerc F; Lacroix J
Pediatric Critical Care Medicine
2007
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Journal Article
<a href="http://doi.org/10.1097/01.pcc.0000269399.47060.6d" target="_blank" rel="noreferrer">10.1097/01.pcc.0000269399.47060.6d</a>
The moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France
Child; Humans; Intensive Care Units; Grief; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Communication; Clinical Competence; Qualitative Research; Morals; Hospitals; Nursing Methodology Research; Pediatric; Adaptation; Psychological; decision making; infant; Parents/education/psychology; ICU Decision Making; social support; Physician's Role/psychology; Hospitalized/psychology; Intensive Care/psychology; Guilt; Life Support Care/psychology; Attitude to Health/ethnology; Parental Consent/psychology; Paris
The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear such responsibilities because they do not have the required knowledge and should be protected from feeling culpable for such decisions. The aim of this grounded theory preliminary study was to examine the moral experience of parents of critically-ill children that required life-support decisions in France. A convenience purposive sample of seven parents was recruited in Paris. Five principal themes emerged as significant from these interviews: (1) a need for more information
(2) physicians should be responsible for life-support decisions
Carnevale FA; Canoui P; Hubert P; Farrell C; Leclerc F; Doussau A; Seguin MJ; Lacroix J
Journal Of Child Health Care
2006
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Journal Article
<a href="http://doi.org/10.1177/1367493506060209" target="_blank" rel="noreferrer">10.1177/1367493506060209</a>
Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity
Female; Humans; Male; Intensive Care Units; Prevalence; Logistic Models; Questionnaires; Prospective Studies; Euthanasia; Multivariate Analysis; Ethics; Medical; decision making; Family/psychology; Nonparametric; Statistics; Life Support Care/utilization; Passive; Critical Illness/therapy; Anxiety/epidemiology/etiology; Depressive Disorder/epidemiology/etiology; France/epidemiology
OBJECTIVE: Anxiety and depression may have a major impact on a person's ability to make decisions. Characterization of symptoms that reflect anxiety and depression in family members visiting intensive care patients should be of major relevance to the ethics of involving family members in decision-making, particularly about end-of-life issues. DESIGN: Prospective multicenter study. SETTING: Forty-three French intensive care units (37 adult and six pediatric); each unit included 15 patients admitted for longer than 2 days. PATIENTS: Six hundred thirty-seven patients and 920 family members. INTERVENTIONS: Intensive care unit characteristics and data on the patient and family members were collected. Family members completed the Hospital Anxiety and Depression Scale to allow evaluation of the prevalence and potential factors associated with symptoms of anxiety and depression. MEASUREMENTS AND MAIN RESULTS: Of 920 Hospital Anxiety and Depression Scale questionnaires that were completed by family members, all items were completed in 836 questionnaires, which formed the basis for this study. The prevalence of symptoms of anxiety and depression in family members was 69.1% and 35.4%, respectively. Symptoms of anxiety or depression were present in 72.7% of family members and 84% of spouses. Factors associated with symptoms of anxiety in a multivariate model included patient-related factors (absence of chronic disease), family-related factors (spouse, female gender, desire for professional psychological help, help being received by general practitioner), and caregiver-related factors (absence of regular physician and nurse meetings, absence of a room used only for meetings with family members). The multivariate model also identified three groups of factors associated with symptoms of depression: patient-related (age), family-related (spouse, female gender, not of French descent), and caregiver-related (no waiting room, perceived contradictions in the information provided by caregivers). CONCLUSIONS: More than two-thirds of family members visiting patients in the intensive care unit suffer from symptoms of anxiety or depression. Involvement of anxious or depressed family members in end-of-life decisions should be carefully discussed.
2001
Pochard F; Azoulay E; Chevret S; Lemaire F; Hubert P; Canoui P; Grassin M; Zittoun R; LeGall JR; Dhainaut JF; Schlemmer B; Group French FAMIREA
Critical Care Medicine
2001
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Journal Article
<a href="http://doi.org/10.1097/00003246-200110000-00007" target="_blank" rel="noreferrer">10.1097/00003246-200110000-00007</a>
Children with Down syndrome: Clinical course and mortality-associated factors in a French medical paediatric intensive care unit
Hospitalization; Intensive Care Units Pediatric; Adolescent; Child; Child Preschool; Critical Illness/ Mortality; Critically Ill Children; Down Syndrome; Down Syndrome/ Complications/ Mortality; Female; Hospital Mortality; Humans; Infant; Male; Mortality; Retrospective Studies
AIM: To investigate clinical course and mortality-associated factors in children with Down syndrome (DS) managed in a medical paediatric intensive care unit. METHODS: A single-centre, retrospective study conducted between 2001 and 2010 in DS children aged 1 month to 16 years. RESULTS: Sixty-six patients with a median age of 24 months (1-192) and a male/female ratio of 1.5 were analysed. Patients presented with history of congenital heart disease (n = 52, 78.8%), mechanical ventilation (n = 40, 60.6%) and chronic upper airway obstruction (n = 10, 15.1%). The primary reason for admission was respiratory failure (n = 56, 84.8%). Pulmonary arterial hypertension (PAH) (n = 19, 28.8%), acute respiratory distress syndrome (ARDS) (n = 18, 27.2%) and sepsis (n = 14, 21.2%) were observed during their clinical course. Twenty-six patients died (39.4%). Mortality-associated factors included the following: (i) baseline characteristics: history of mechanical ventilation, chronic upper airway obstruction and congenital heart disease; (ii) clinical course during paediatric intensive care unit stay: sepsis, catecholamine support, ARDS, PAH and nosocomial infection. In multivariate logistic analysis, history of mechanical ventilation, ARDS and PAH remained independently associated with death. CONCLUSIONS: The mortality rate in critically ill DS children admitted for medical reasons is high and is predominantly associated with respiratory conditions.
Joffre C; Lesage F; Bustarret O; Hubert P; Oualha M
Journal Of Paediatrics And Child Health
2016
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<a href="https://doi.org/10.1111/jpc.13214" target="_blank" rel="noreferrer">10.1111/jpc.13214</a>
[end-of-life In Specialized Medical Pediatrics Department: A French National Survey]
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
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.
Ravanello A; Desguerre I; Frache S; Hubert P; Orbach D; Aubry R
Archives Pédiatrie
2017
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).