Chapter 24: Neonatal Palliative Care

I. GENERAL PRINCIPLES

1. The World Health Organization’s definition of palliative care (PC) is as follows: “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

   1. Provides relief from pain and other distressing symptoms.

   2. Affirms life and regards dying as a normal process.

   3. Intends neither to hasten nor postpone death.

   4. Integrates the psychological and spiritual aspects of patient care.

   5. Offers a support system to help patients live as actively as possible until death [and] to help the family cope during the patient’s illness and in their own bereavement.

   6. Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated.

   7. Will enhance quality of life, and may also positively influence the course of illness.

   8. Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life.

2. World Health Organization’s definition of palliative care for children:

   1. The active total care of the child’s body, mind, and spirit, and also involves giving support to the family.

   2. Begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease. HCP must evaluate and alleviate a child’s physical, psychological and social distress. Requires a broad multidisciplinary approach that includes the family.

   3. Can be provided at home, community health centers or in tertiary care facilities.

3. American Academy of Pediatrics definition of pediatric palliative care: “Pediatric palliative care addresses the needs of infants, children, and the needs of their families, providing treatments that aim to:

   1. Relieve suffering across multiple realms, including the physical, psychological, social (isolation), practical (home-based services or financial stress), and existential/spiritual (why is this happening?).

   2. Improve the child’s quality and enjoyment of life while helping families adapt and function during the illness and through bereavement.

   3. Facilitate informed decision-making by patients, families, and health care professionals.

   4. Assist with ongoing coordination of care among clinicians and across various sites of care.”

4. Hospice

   1. All hospice care is palliative care, but not all palliative care is hospice.

      1. Hospice care is palliative care. For example, the family of a baby with trisomy 18 and complex congenital heart disease receiving nasogastric feedings may choose to care for their baby at home instead of in the neonatal intensive care unit (NICU) during the baby’s expected shortened life span. With a skilled in-home hospice supportive program, the family’s goal of having meaningful time with their child at home may be supported with intermittent nursing visits, multidisciplinary support, and bereavement support. Nasogastric feedings and attention to the baby’s comfort level can be continued at home, and the family may or may not choose to pursue hospitalizations or surgical interventions if the baby’s respiratory status deteriorates.

      2. Not all palliative care is hospice care. For example, ...