Care Intensity and Palliative Care in Chronically Critically Ill Infants.

CONTEXT: Increasingly, chronically critically ill (CCI) infants survive to discharge from Neonatal Intensive Care Units (NICUs). Little is known about their care intensity and the primary and specialty palliative care families receive at and following discharge. OBJECTIVES: To describe care intensity and primary and specialty palliative care received by NICU CCI infants at discharge and one year. METHODS: Chart abstraction of CCI infants at three academic centers discharged at ≥42 weeks corrected gestational age with medical technology between 2016 and 2019, including demographics, care intensity, and primary and specialty palliative care received at discharge and one year. RESULTS: Among 273 infants, NICU median stays were 45 [IQR 23-92] days. Primary diagnoses included congenital and/or genetic conditions (68.5%), prematurity (28.2%), and birth events (3.3%). At discharge, surgical feeding tubes (75.1%) and tracheostomies (24.5%) were the most common technologies. Infants received a median of 6 [IQR 4-9] medications and were followed by a median of 8 [IQR 7-9] providers. At one year, 91.4% continued with one or more technologies, similar numbers of medications and specialty providers. In the NICU, nearly all families had social work involvement, 78.8% had chaplaincy and 53.8% child life; 19.8% received specialty palliative care consultation. At one year, only 13.2% were followed by palliative care. CONCLUSIONS: CCI infants receive intensive medical care including multiple medical technologies, medications, and specialty follow up at discharge and remain complex at one year of life. Most receive primary interprofessional palliative care in the NICU, however these infants and their families may have limited access to specialty palliative care in the short- and long-term.

Using organizational assessment surveys for improvement in neonatal intensive care.

BACKGROUND: Problems with organizational culture, lack of or poor team communications, and conflict are often seen as barriers to improvement efforts. METHODS: A survey measuring aspects of organizational culture was administered twice to staff in neonatal intensive care units participating in the Neonatal Intensive Care Unit Quality Improvement Collaborative Year 2000 collaborative. The surveys provided comparative data on coordination, teamwork and leadership, conflict management, unit leadership and unit culture. These data were summarized and fed back to NICU teams with guidance on their use. Interviews on the use of the survey were held with 12 medical directors and patient care leaders in 9 different NICUs. RESULTS: The findings indicated that all the units contacted saw themselves as committed to undertaking the organizational survey and using the results. Some units shared the data widely and initiated changes. Other units limited the distribution of data to the unit leadership. There was no apparent relationship between scores on the survey and activities undertaken. Several respondents credited the survey with helping to promote discussions about organizational and team issues. CONCLUSIONS: Future use of the survey should include additional materials to assist in disseminating the results to staff.