DESCRIPTION

Palliative care attends to the mind, body, and spirit of children and their families as they navigate a chronic or life-limiting condition.

• Pediatric palliative care employs a multidisciplinary approach to prevent and alleviate all forms of suffering: physical, emotional, psychological, spiritual, social, existential, etc.
• Palliative care teams provide psychosocial support, counseling, and education to parents and families. Palliative care teams explore patients’ goals and values and help actualize them in their plans of care. Central to practicing palliative care is guiding decision making and difficult communication. Palliative care practitioners can offer expert guidance on complex pain and symptom management.
• Palliative care can be introduced at any point in a chronic or life-limiting illness trajectory and can continue regardless of whether ongoing disease-directed therapies are sought.
• Hospice care is a subset of palliative care; it is a service aimed at maintaining comfort and dignity for patients with a suspected prognosis of ≤6 months by providing in-home support and resources for children approaching end-of-life. Hospice services provide expert symptom management, psychosocial or spiritual support, and thirteen months of bereavement follow-up. Families are generally required to provide much of the day-to-day care. Pediatric hospice differs from adult hospice services in Section 2302 of the Affordable Care Act (concurrent care requirement) that allows children to be enrolled in hospice to continue receiving disease-directed therapies.

EPIDEMIOLOGY

About 42,000 children aged 0 to 19 years died in the United States in 2013. More than half (55%) of all pediatric deaths were among infants (<1 year of age), and 2/3 of those are the result of conditions related to the perinatal period. The leading causes of death among children and adolescents are motor vehicle crashes, firearms, malignant neoplasms, suffocation, and drowning; for children <1 year of age, they are congenital anomalies, prematurity, sudden infant death syndrome (SIDS), complications of pregnancy, and traumatic accidents.

COMMONLY ASSOCIATED CONDITIONS

A survey of parents of children approaching end-of-life revealed that 89% felt that some symptoms—predominantly pain, dyspnea, and fatigue—were undertreated in the last month of life.

• Pain
  • Nociceptive somatic: localized musculoskeletal pain that may be sharp, stabbing, throbbing, or sore
  • Nociceptive visceral: often vague and referred internal pain that may be dull, aching, crampy, or gnawing
  • Neuropathic: derived from damage to structures of the nervous system manifesting as paresthesia, numbness, shooting, burning, or shock-like sensations
    • Often associated with neurologic or neurodegenerative conditions
    • Visceral hyperalgesia is a type of neuropathic pain syndrome that may affect particularly neonates in the ICU who have been highly instrumented and received repeated noxious stimuli to their abdominal viscera; it manifests as severe discomfort and irritability with feeding, bowel movements, and otherwise, benign handling and care.
• Dyspnea: may be due to underlying medical condition (heart failure, pulmonary disease) or reflexive changes in respiratory pattern at the end of life
• Fatigue: may be due to physical limitations, pain, or psychological/cognitive slowing
• Nausea: multiple etiologies; source guides appropriate treatment.
• Delirium/agitation: myriad etiologies, generally waxing and waning, may present as hypoactive or hyperactive, presents variably based on age and developmental milestones that were achieved
• Constipation: multiple etiologies; source guides appropriate treatment.
• Secretions: generally more distressing to families than to patients at the end of life
• Anticipatory grief: symptoms of depression, hyperawareness of clinical condition, fear, and vague physical complaints experienced by the child or family members as they acknowledge an impending death
• Existential distress: psychological turmoil experienced by a patient nearing death which may include loss of connectedness to others, lack of purpose or meaning, struggles around sense of self and identity, and crises of faith