1. Cavaliere, Terri MS, RNC, NNP

Article Content

No doubt remains as to whether palliative care should be a standard in the care of neonates. The question is where to provide that care. Although the site ultimately depends on the parents' wishes and the ability to make timely arrangements for alternatives, the literature provides compelling evidence on which to base the conclusion that the home is the ideal setting for palliative care for dying neonates and infants.


Family-centered care is a fundamental principle of palliative care. Hospice philosophy acknowledges that terminally ill patients exist within a family system; hospice programs are built on the tenet that the family is the unit of care (Davis, 2006). According to Milone-Nuzzo and McCorkle (2006), palliative care is multidimensional, involving physical, social, spiritual, and interpersonal aspects of support. They add that healthcare professionals have not explored the potential of palliative care to maximize the quality of life for patients and families in a home setting. In a survey of family members who had experienced the loss of a loved one, greater satisfaction with patient symptom management and emotional support was reported for cases in which care was provided at home with hospice services. Families welcomed the opportunity for involvement when home care was possible.


Despite the efforts to create a family-centered environment in many NICUs, the atmosphere still is not conducive to true palliative care. NICU is a highly technical, busy area in which the focus is on saving lives and end-of-life care is not a priority (Kain, 2006). It is difficult for staff to devote the necessary time to the needs of dying infants and their families in the way they deserve. Physical facilities also are limited, and a screen placed around the bed of a terminally ill infant is a poor substitute for the comforts of home. It is emotionally and psychologically difficult for grieving parents to share the same space with families whose babies are improving, growing, and progressing toward discharge.


Home hospice programs allow neonates/infants and their families to be cared for among the living, and the programs remove them from the isolation experienced when death occurs in a hospital setting. "Hospice provides a stronger, broader safety net of support and care around the family, enhancing their ability to meet the challenges of a life-threatening illness" (Sumner, 2006, p. 97). There is more comfort, familiarity, and privacy in the home. Hospice professionals have the ability to identify cultural practices and provide culturally sensitive care.


At home, families are free from the rules and regulations of the NICU, which usually limit unrestricted access of family members to their infant. Parents are able to function as parents, incorporating the neonate into the family and building lasting memories. Providing end-of-life care in the home also permits siblings to bond with the infant and assist in the care, thus validating their relationship, diminishing feelings of helplessness, and possibly impacting the way they integrate the loss over time (Sumner, 2006). Other family members and friends can get acquainted with the infant, learn about care needs, and provide more appropriate support for the nuclear family. Care at home is less disruptive to family life because there is no need to travel to a hospital, and parents have more time to spend with older siblings. Finally, full, multidisciplinary, comprehensive hospice services and support are more accessible on an outpatient basis.


In my opinion, palliative care for neonates and infants should be provided in the home to ensure an optimal outcome for patients and families. The ultimate decision, however, rests with the parents.




Davis, B. (2006). Supporting families in palliative care. In B. Ferrell, & N. Coyle (Eds.), Textbook of palliative nursing (pp. 545-560). New, York, NY: Oxford University Press. [Context Link]


Kain, V. K. (2006). Palliative care delivery in the NICU. What barriers do neonatal nurses face? Neonatal Network, 25, 387-392. [Context Link]


Milone-Nuzzo, P., & McCorkle, R. (2006). Home care. In B. Ferrell, & N. Coyle (Eds.), Textbook of palliative nursing (pp. 771-786). New York, NY: Oxford University Press. [Context Link]


Sumner, L. (2006). Palliative care: The hospice perspective. In B. Ferrell, & N. Coyle (Eds.), Textbook of palliative nursing (pp. 909-924). New York, NY: Oxford University Press. [Context Link]