Palliative care is the total care of a patient with a life-limiting illness regardless of the disease trajectory or treatment options chosen. There is a special focus on pain/symptom management, communication, quality of life, family support, and grief support. Neonatal-perinatal palliative care is the unique care provided to neonates and women pregnant with a fetus with a life-limiting diagnosis. Up to 3% of pregnancies are complicated by a life-limiting diagnosis and roughly one-third of deaths in children's hospitals occur in neonatal intensive care units (NICUs). As a result, many babies and families benefit from palliative care. There is a special role for palliative care when the likelihood of long-term survival is minimal or when there is a low likelihood of survival without severe morbidity. Decisions around the most appropriate treatment plan are often based around views of acceptable quality of life. While palliative care is essential in the NICU, it is often overlooked, and there are many barriers to it being considered or implemented in suitable cases. However, palliative care can readily be integrated into the management of neonates with life-limiting illnesses and can be provided concurrently with cure-oriented or life-extending care. With the support of the care team, families can begin to grieve, plan, make meaningful memories, redefine hope, and make value-driven medical decisions for their baby that align with their goals and values. When a child is imminently dying, the end-of-life care provided ensures the baby is comfortable and aids the family in the grieving process.
Avery's Diseases of the Newborn
neonatal-perinatal palliative care; life-limiting diagnoses; perinatal palliative birth plan; end-of-life care; symptom management; grief support; ethical challenges
Cortezzo DE, Carter BS. Palliative care. Avery’s Diseases of the Newborn (11th Ed). Published online 2024:279-286. doi:10.1016/b978-0-323-82823-9.00023-4