End-of-life Decisions and Practices as Viewed by Health Professionals in Pediatric Critical Care: A European Survey Study
Decision Making; end-of-life (EOL); end-of-life (EOL); ethics; pediatric critical care
BACKGROUND AND AIM: End-of-Life (EOL) decision-making in paediatric critical care can be complex and heterogeneous, reflecting national culture and law as well as the relative resources provided for healthcare. This study aimed to identify similarities and differences in the experiences and attitudes of European paediatric intensive care doctors, nurses and allied health professionals about end-of-life decision-making and care. METHODS: This was a cross-sectional observational study in which we distributed an electronic survey to the European Society of Paediatric and Neonatal Intensive Care (ESPNIC) members by email and social media. The survey had three sections: (i) 16 items about attitudes to EOL care, (ii) 14 items about EOL decisions, and (iii) 18 items about EOL care in practice. We used a 5-point Likert scale and performed descriptive statistical analysis. RESULTS: Overall, 198 questionnaires were completed by physicians (62%), nurses (34%) and allied health professionals (4%). Nurses reported less active involvement in decision-making processes than doctors (64% vs. 95%; pā<ā0.001). As viewed by the child and family, the child's expected future quality of life was recognised as one of the most critical considerations in EOL decision-making. Sub-analysis of Northern, Central and Southern European regions revealed differences in the optimal timing of EOL decisions. Most respondents (nā=ā179; 90%) supported discussing organ donation with parents during EOL planning. In the sub-region analysis, differences were observed in the provision of deep sedation and nutritional support during EOL care. CONCLUSIONS: This study has shown similar attitudes and experiences of EOL care among paediatric critical care professionals within European regions, but differences persist between European regions. Nurses are less involved in EOL decision-making than physicians. Further research should identify the key cultural, religious, legal and resource differences underlying these discrepancies. We recommend multi-professional ethics education to improve EOL care in European Paediatric Intensive Care.
Zanin A; Brierley J; Latour JM; Gawronski O
Frontiers in Pediatrics
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/10.3389/fped.2022.1067860" target="_blank" rel="noreferrer noopener">10.3389/fped.2022.1067860</a>
Ethical, Cultural, Social, and Individual Considerations Prior to Transition to Limitation or Withdrawal of Life-Sustaining Therapies
decision making; ethics; child; child parent relation; critical illness/th [Therapy]; female; human; male; patient participation; pediatric intensive care unit; psychology; social media; terminal care; transcultural care; treatment withdrawal
As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies, withholding, or withdrawing therapies in a PICU. Clarifying beliefs and values is a necessary prerequisite to approaching these conversations. Striving for medical consensus is important. Discussion, reflection, and ethical analysis may determine a range of views that may reasonably be respected if professional disagreements persist. Parental decisional support is recommended and should incorporate their information needs, perceptions of medical uncertainty, child's condition, and their role as a parent. Child's involvement in decision making should be considered, but may not be possible. Culturally attuned care requires early examination of cultural perspectives before misunderstandings or disagreements occur. Societal influences may affect expectations and exploration of such may help frame discussions. Hospital readiness for support of social media campaigns is recommended. Consensus with family on goals of care is ideal as it addresses all parties' moral stance and diminishes the risk for superseding one group's value judgments over another. Engaging additional supportive services early can aid with understanding or resolving disagreement. There is wide variation globally in ethical permissibility, cultural, and societal influences that impact the clinician, child, and parents. Thoughtful consideration to these issues when approaching decisions about limitation or withdrawal of life-sustaining therapies will help to reduce emotional, spiritual, and ethical burdens, minimize misunderstanding for all involved, and maximize high-quality care delivery.
Kirsch RE; Balit CR; Carnevale FA; Latour JM; Larcher V
Pediatric Critical Care Medicine
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/10.1097/PCC.0000000000001488" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001488</a>
Forgoing life support: how the decision is made in European pediatric intensive care units
Decision Making; Intensive Care Units Pediatric; Life Support Care; Withholding Treatment/sn [statistics & Numerical Data]; Child Preschool; Europe; Female; France; Health Care Surveys; Humans; Male; Prospective Studies; Surveys And Questionnaires; Terminal Care/td [trends]
PURPOSE: To determine how decisions to forgo life support are made in European pediatric intensive care units (PICUs). METHODS: A multicenter, prospective study, the Eurydice II study, among 45 PICUs: 20 in France, 21 in Northern/Western (N/W) European countries, and 4 in Eastern/Central (E/C) Europe. Data were collected between November 2009 and April 2010 through a questionnaire. RESULTS: The decision to forgo life-sustaining treatment was made in 166 (40.6%) out of 409 deceased children (median 42.9%, France 38.2%, N/W European countries 60.0%, E/C European countries 0%; P < 0.001). In the E/C group, more patients died after cardiopulmonary resuscitation (CPR) failure than after forgoing life support (P < 0.001). In all PICUs, caregivers discussed the decision during a formal meeting, after which the medical staff made the final decision. The decision was often documented in the medical record (median 100%). The majority of the parents were informed of the final decision and were at the bedside during their child's death (median 100%). Decision to forgo life-sustaining treatment occurred in 40.6% of children, compared with 33% in Eurydice I. A high percentage of parents from France were now informed about the meeting and its conclusion as compared with Eurydice I (median 100%). CONCLUSIONS: The results of this study and comparison with the Eurydice I study (2002) show a trend towards standardization of end-of-life practices across N/W European countries and France in the past decade.
Devictor DJ; Latour JM
Intensive Care Medicine
2011
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/s00134-011-2357-3" target="_blank" rel="noreferrer">10.1007/s00134-011-2357-3</a>