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. The Champions received initial and ongoing education, allowing them to function as liaisons to the Palliative Care Team while providing education and mentorship to staff. A program evaluation tool measuring Champion comfort and confidence in the provision of palliative care has shown positive results. Champions reported an increase in confidence in their ability to identify appropriate consults and mentor staff, as well as an increase in comfort in being considered an expert in palliative care. Consults to the Palliative Care service increased by 28% within the first 12 months of program implementation. The Palliative Care Champions Program framework can be easily adapted to fit the needs of other organizations.

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. Subjects consisted of nine dyads of neonatologists and English-speaking parents whose infant had an uncertain prognosis. RESULTS: Parents were overall satisfied with neonatologists' communications concerning their infant's uncertain trajectory. Nonetheless, both experienced challenges and distress during communication, impeding collaboration and engagement. CONCLUSIONS: Families and neonatologists value principles of patient centered communication but report challenges implementing this practice. Incorporating a multidisciplinary approach in settings of prognostic uncertainty to foster patient centered communication, may enhance communication surrounding NICU care.

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). Compared to infants without birth defects, infants with T18, T13, bilateral renal agenesis, and skeletal dysplasias had longer survival rates, higher inpatient medical costs, and longer LOS. CONCLUSION: Care practices and survival have changed over time for infants with T18, T13, bilateral renal agenesis, and skeletal dysplasias. This information will be useful for clinicians in counseling families and in shaping goals of care prenatally and postnatally.