Implementing Palliative care, based on family-centered care, in a highly complex neonatal unit

Area of Science:

• Neonatology
• Palliative Care
• Medical Ethics

Background:

• Neonatal mortality remains a significant concern globally.
• Understanding the causes and circumstances surrounding neonatal deaths is crucial for improving care.
• End-of-life care in neonatal intensive care units (NICUs) requires sensitive and family-centered approaches.

Purpose of the Study:

• To analyze the primary causes and contributing factors of neonatal mortality.
• To evaluate the impact of a palliative care protocol on the quality of end-of-life care.
• To assess changes in family support and patient experience during the dying process.

Main Methods:

• Retrospective observational study of neonatal deaths from January 2009 to December 2019.
• Data collection on causes of death and end-of-life care circumstances.
• Comparison of two periods: before and after palliative care protocol implementation.

Main Results:

• Congenital malformations accounted for 45.6% of neonatal deaths.
• Most neonates (74.4%) transitioned to palliative care, often due to poor neurocognitive prognosis.
• Parents were present in 72% of deaths; 23% occurred in private rooms outside the NICU.
• Significant improvements in support and patient experience were noted post-protocol implementation.

Conclusions:

• Severe congenital malformations are the leading cause of neonatal death.
• Palliative care transition and parental presence are common during neonatal end-of-life care.
• The palliative care protocol enhanced family-centered end-of-life care quality in the neonatal setting.