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*

Abstract

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.

Causes, timing, and modes of death in a tertiary pediatric intensive care unit

“… 12 , 25 Although disparities in end-of-life goals for chronic and complex patients occur, they could be more likely to go through WLST, which might be attributed to medical reasons, avoidance of suffering, and effective communication with family. 30 , 31 Some parents may even change their attitude towards end-of-life care from full support to DNR and palliative care after building up trust and having focused communications with health care providers. 32 Thus, early engagement of palliative care services, when available, and initiation of end-of-life discussions could smooth family acceptance of limiting life-sustaining interventions when deemed futile.…”

Condições crônicas complexas e desfechos hospitalares em uma unidade de terapia intensiva pediátrica

“…Apesar do avanço das discussões sobre cuidados paliativos na infância, muitas crianças crônicas com doenças incompatíveis com a vida acabam recebendo suporte terapêutico curativista. Isso prolonga suas vidas de forma artificial, expondo-as a riscos e desfechos semelhantes a outras crianças não portadoras dessa condição, (20) além de elevarem gastos em saúde sem necessariamente promoverem qualidade de vida. (21) Este estudo sugere algumas limitações.…”

National Divergences in Perinatal Palliative Care Guidelines and Training in Tertiary NICUs

“…For example, PnPC teams currently consists of a heterogeneous mix of team structure (size, professions, knowledge, spectrum of patients and area of work) as well as resources (time, monetary, infrastructure). To date, no specialized PnPC teams with a specific defined concept and structure exist in Switzerland ( 65 ). This stands in contrast to other types of care provided in level III NICUs in which clear requirements have been defined ( 66 ).…”