Comparison of End-of-Life Care Practices Between Children With Complex Chronic Conditions and Neonates Dying in an ICU Versus Non-ICUs: A Substudy of the Pediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) Project.

OBJECTIVES: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU. DESIGN: Substudy of a nation-wide retrospective chart review. SETTING: Thirteen hospitals, including 14 pediatric and neonatal ICUs, two long-term institutions, and 10 community-based organizations in the three language regions of Switzerland. PATIENTS: One hundred forty-nine children (0-18 yr) who died in the years 2011 or 2012. Causes of death were related to cardiac, neurologic, oncological, or neonatal conditions. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Demographic and clinical characteristics, therapeutic procedures, circumstances of death, and patterns of decisional processes were extracted from the medical charts. Ninety-three (62%) neonates (median age, 4 d) and children (median age, 23 mo) died in ICU, and 56 (38%) with a median age of 63 months outside ICU. Generally, ICU patients had more therapeutic and invasive procedures, compared with non-ICU patients. Changes in treatment plan in the last 4 weeks of life, such as do-not-resuscitate orders occurred in 40% of ICU patients and 25% of non-ICU patients (p < 0.001). In the ICU, when decision to withdraw life-sustaining treatment was made, time to death in children and newborns was 4:25 and 3:00, respectively. In institutions where it was available, involvement of specialized pediatric palliative care services was recorded in 15 ICU patients (43%) and in 18 non-ICU patients (78%) (p = 0.008). CONCLUSIONS: This nation-wide study demonstrated that patients with a complex chronic condition who die in ICU, compared with those who die outside ICU, are characterized by fast changing care situations, including when to withdraw life-sustaining treatment. This highlights the importance of early effective communication and shared decision making among clinicians and families.

Patterns of paediatric end-of-life care: a chart review across different care settings in Switzerland.

BACKGROUND: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland. METHODS: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland. RESULTS: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare. CONCLUSIONS: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.

When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care.

BACKGROUND: Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services. METHODS: Questionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure. RESULTS: Of 307 eligible families, 267 could be contacted and 135 (51%) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child's EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences. CONCLUSIONS: Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.