I. INTRODUCTION. Providing compassionate, family-centered, end-of-life care in the neonatal intensive care unit (NICU) environment is challenging for caregivers. The care team must balance the medical needs of the infant with those of the parents and family. Parents are profoundly affected by the compassion and treatment they receive from health care providers during end-of-life care. Although the death of a baby is a devastating event, the knowledge and skill of the multidisciplinary team can greatly influence the ability of the parents to effectively cope with their loss.

Despite advances in neonatal care, more children die in the perinatal and neonatal period than in any other time in childhood. The majority of neonatal deaths in the United States are due to congenital malformations and disorders related to short gestation and low birth weight.

For many families, a lethal or life-limiting condition may be diagnosed early in the pregnancy; thus, the opportunity to begin the decision-making process occurs prior to admission to the NICU. Perinatal hospice is an alternative to termination of the pregnancy and provides a structured approach for the parents and the care team when developing a plan to create the best possible outcome for the baby and family.

II. FAMILY-CENTERED END-OF-LIFE CARE PRINCIPLES AND DOMAINS. The provision of quality end-of-life care is a process that allows for clear and consistent communication delivered by a compassionate multidisciplinary
team within a framework of shared decision making. Providing physical and emotional support and follow-up care enables the parents to begin the healing process as they return home.

End-of-life domains comprise family-centered care in the intensive care unit. These domains provide guidance and process measures to assess and provide quality of care at the end of life.

A. Patient- and family-centered decision making

B. Communication among the multidisciplinary team members and between the team and the parents and families

C. Spiritual support of families

D. Emotional and practical support of families

E. Symptom management and comfort care

F. Continuity of care

G. Emotional and organizational support for health care workers

A. Communication and collaboration. Family support in the NICU relies heavily on communication between the family and the health care team and the relationship among the members of the care team. A collaborative care model that allows physicians, nurses, and other team members to work cooperatively and share decisions, while respecting each professional’s unique contribution, promotes an environment where the best care can be delivered.

1. Care provided at the end of life is an extension of the relationship already in place between the care providers and the infant and family. Staff can facilitate this relationship in the following ways:

a. Communicate with families through frequent meetings with the primary team.

b. Include the obstetrical care team and other consultants when appropriate.

c. Encourage sibling visitation and extended family support.

d. Encourage incorporation of cultural and spiritual customs.

e. Provide an environment that allows parents to develop a relationship with their infant, visiting and holding as often as medically appropriate.

2. Parents want to be given information in a clear, concise manner and value honesty and transparency.

3. Clear recommendations about the goals of care (life support vs. comfort care) from the health care team are appropriate and may relieve parents of the some of the burden of decision making in the end-of-life context.

4. Most neonatal deaths occur following a decision to remove life-sustaining treatment.

5. Prior to meeting with the family to discuss redirection of care from treatment to comfort, it is important for the multidisciplinary team to agree on goals of care and identify the needs of the patient and family.

6. Address conflicts within the team early in the process, utilizing available professional supports, such as ethical or spiritual consultants.

7. It is essential for the team to reach agreement prior to meeting with the family.

8. One spokesperson (usually the attending physician) is recommended to maintain continuity of communication.