Changing the Culture of Pediatric Palliative Care at the Bedside.

The benefits of palliative care services have been widely documented; however, many organizations are unable to financially support the number of professionals needed to meet the growing demand. Nurses receive minimal training in palliative care, and the resulting knowledge gap can lead to a lack of confidence when providing the essential aspects of palliative care. Recognizing the needs of patients and staff, one organization created a Palliative Care Champions Program to support and educate bedside staff.

Communication between neonatologists and parents when prognosis is uncertain.

Objective: When an infant's prognosis is uncertain, communication between neonatologists and parents surrounding goals of care and decision-making can be challenging. This qualitative study explored communication between neonatologists and parents to discover qualities which may enhance or impede parent-clinician partnership under such difficult circumstances.

Study Design: Guided by the National Cancer Institute (NCI) Patient Centered Communication framework, semi-structured individual interviews were conducted and analyzed regarding neonatologist and parent perceptions of their communication.

Survival and healthcare utilization of infants diagnosed with lethal congenital malformations.

Objective: We assessed survival, hospital length of stay (LOS), and costs of medical care for infants with lethal congenital malformations, and also examined the relationship between medical and surgical therapies and survival.

Study Design: Retrospective cohort study including infants born 1998-2009 with lethal congenital malformations, identified using a longitudinally linked maternal/infant database.

Results: The cohort included 786 infants: trisomy 18 (T18, n = 350), trisomy 13 (T13, n = 206), anencephaly (n = 125), bilateral renal agenesis (n = 53), thanatophoric dysplasia/achondrogenesis/lethal osteogenesis imperfecta (n = 38), and infants > 1 of the birth defects (n = 14).