"You matter because you are you, and you matter to the last moment of your life."
-- Dame Cicely Saunders, founder of the modern hospice movement
Hospice and palliative care are important components in the NICU. Hospice is not a location; it is a philosophy that beholds death and dying as natural parts of the life cycle. In the NICU, hospice provides a continuum of care that honors the infant’s comfort and the parents’ role as primary caregivers. It puts the best interests of the infant at the center of decision-making, and involves the parents as collaborators with the health care team.
Palliative care is a broader concept that aims to relieve suffering by addressing pain and other symptoms of a condition or disease, and attending to the holistic needs of the patient as well as the family. Palliative care can also be provided while pursuing beneficial and lifesaving medical treatments. Palliative care is an umbrella that includes hospice, which focuses on end-of-life support.
In the NICU, hospice and palliative care affirms life by focusing on quality of life. Comfort care is provided to the infant and support is offered to the grieving family so that they can tend to their dying baby. Dying is regarded as a normal process, with care intending neither to hasten nor postpone death. Ideally, hospice and palliative care involves a comprehensive team approach that includes every practitioner and specialist involved in the family’s care, plus trained parent advocates and hospice professionals.
If a baby has been diagnosed during pregnancy with a fatal condition, perinatal hospice can be part of the birth and parenting plan. For an up-to-date list of perinatal hospice and palliative care support programs, visit http://perinatalhospice.org.
For parent support, see A Gift of Time.
If a baby is admitted to the NICU and the need for hospice becomes apparent, health care practitioners can be decision leaders by informing the parents that hospice provides the kind of care that fulfills the best interests of their infant. With comfort care, some babies will live longer. Sometimes, life is extended more by hospice than intensive care, perhaps because aggressive care increases suffering and distress, whereas comfort care ameliorates it.
For more on end-of-life decisions in the NICU, see the CCMD Neonatal Guidelines in the Collaboration Pages.