Chapter 51: Neonatal Palliative Care

I. Concept of neonatal palliative care

1. Comprehensive care

   1. Neonatal palliative care is a modality of medical treatment that focuses not only on the physical aspects of disease but also on alleviating suffering and promoting the developmental, emotional, spiritual, and sociocultural well-being of the infant and his/her family.

   2. It is appropriate for infants at all stages of the disease process, from birth to death or discharge, and it can be continued at home.

   3. Palliative care is different than end-of-life care and is not hospice care.

2. Promotes comfort

   1. It promotes the provision of comfort care with meticulous treatment of pain and other symptoms that interfere with the infant's quality of life.

   2. It promotes infant activities directed to comfort, such as increasing the time spent with parents, kangaroo care, infant massage, and music therapy, while supporting the developmental needs of the infant.

3. Promotes communication

   1. It furthers good communication with families, helping with decision making and defining goals of care.

4. New concept of palliative care in neonates

   1. As a new area of neonatal medicine, most palliative care guidelines and protocols that are currently being developed apply to the newborn with life-threatening conditions.

   2. The majority of deaths in the neonatal intensive care unit occur soon after birth; among very low birthweight infants (≤1500 g), 51% of the deaths occur in the first 3 days of life.

   3. Palliative care for the convalescent newborn infant is a novel concept.

II. Models of neonatal palliative care

1. Integrative model

   Neonatal palliative care is provided alongside routine neonatal intensive care (Figure 51-1).

   1. Before birth

      The diagnosis and management of a suspected sick infant frequently starts before birth, when a fetal life-threatening condition is diagnosed during the pregnancy.

      1. Prenatal conferences to discuss fetal and neonatal medical care often include obstetricians, neonatologists, geneticists, and other subspecialists including palliative care team members.

      2. These conferences may reach high levels of complexity, involving not only the physical aspects of the fetal condition, but also the psychosocial, emotional, cultural, and religious challenges for the parents and their families.

      3. Some infants may have undergone surgical procedures during fetal life.

      4. Decisions about limitations of resuscitation and maximization of comfort care may have occurred prenatally.

   2. In the delivery room

      1. A detailed evaluation by an experienced clinician shortly after birth is necessary to confirm the prenatal diagnosis, assess the infant's clinical condition, and make sure plan of treatment is followed.

   3. In the NICU

      1. Integration of palliative care to curative treatments may occur from birth or later in the course of a worsening medical condition despite intensive care efforts.

      2. Palliative care protocols, guidelines, and electronic order sets are useful tools to guide providers in this process.

      3. The role of palliative medicine specialists may be crucial in blending palliative care into daily neonatal intensive care, and also care once the infant is discharged home.

   4. End of life

      1. Death may occur in the hospital, at home with hospice care, or in an inpatient hospice facility, ...