Population-level analysis of appropriateness of end-of-life care for children with neurological conditions
Cohort; Indicators; Quality of Care
OBJECTIVE: To measure the appropriateness of end-of-life care for children who died with neurological conditions. STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurological conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed analysis of variance for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care. RESULTS: Between 2010 and 2017, 139 children with neurological conditions died in Belgium. For potentially appropriate care, in the last 30 days 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days 45% had blood drawn, and 27% were admitted to ICU. CONCLUSIONS: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurological conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and phlebotomy.
Piette V; Smets T; Deliens L; van Berlaer G; Beernaert K; Cohen J
Journal of 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/10.1016/j.jpeds.2022.10.037" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.10.037</a>
Palliative care in neonatology: French neonatologists' practice
cohort; ethics; neonatal-period; Neonatology; Palliative Care; prematurity
Background. - Though ethical dilemma is common in neonatal practice, it is only recently subject to scientific research. Objectives. - We aimed to describe neonatologists' practices in end of life decision-making processes and in palliative care, and their practical implementation in NICU. Methods. - This cross-sectional prospective study was performed by an online survey. Pediatricians from French level III maternity wards were selected. Data collected concerned the general characteristics of the participants as well as their personal awareness of palliative reflection. Five clinical cases explored processes of discussion and decision in palliative care, as well as their implementation. Results. - Seventy-one practitioners responded on 65 level III NICUs. Ten percent were trained in palliative medicine and 17% had this project. The palliative care team was invited in less than a third of the multidisciplinary meetings, although most responders acknowledged its usefulness in accompanying children, their families or caregivers. Parents' weight in the final decision was important for the responders but less than that of doctors. It concerned parents' vision on disability. For palliative care in the delivery room, 13% did not use any medication. Others mostly used the umbilical vein. Midwives more often took responsibility of palliative care in the delivery rooms. Conclusions. - Neonatologists expert in palliative care are still too few in level III centers. Palliative teams are not yet involved in patient's regular care. Practices in palliative care in France are still quite dependent on the center, especially regarding medications. This study underlines the importance of interventions training neonatologists in the field of palliative medicine. (c) 2017 Elsevier Masson SAS. All rights reserved.
2017-12
Martini P; Alluin R; Vieux R
Medecine Palliative
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).
<a href="http://doi.org/10.1016/j.medpal.2017.08.008" target="_blank" rel="noreferrer">10.1016/j.medpal.2017.08.008</a>