ABP Pediatric Palliative key terms

Interdisciplinary care for children with serious or life-limiting illness that addresses physical, emotional, social, and spiritual needs from diagnosis onward, alongside curative or life-prolonging treatment, aiming to maximize comfort and quality of life for the child and family.

A financing and care model in which children enrolled in hospice may simultaneously continue disease-directed or curative therapies, removing the requirement to forgo life-prolonging treatment in order to receive hospice benefits.

Planned supportive care for fetuses and newborns with prenatally diagnosed life-limiting conditions, beginning before birth and continuing through delivery, neonatal life, and death, with attention to family bonding and memory-making.

An approach that treats the family as an essential partner in care, honoring parents' knowledge of the child, supporting family involvement in decisions, and adapting care routines to the family's values and circumstances.

A continuous, coordinated primary care model in which a personal clinician leads an accessible team that knows the child and family well and organizes specialty, community, and palliative services.

A benefit and philosophy of care for people with limited prognosis that emphasizes comfort, symptom control, and support for family caregivers, typically delivered where the patient lives.

A behavioral pain scale for children who cannot self-report, scoring Face, Legs, Activity, Cry, and Consolability from 0 to 2 each, yielding a total of 0 to 10.

A self-report pain scale using six cartoon faces with numerical anchors from 0 to 10, designed for children aged about three and older who can understand and point to a face matching their pain.

An observational pain tool for newborns that scores facial expression, cry, breathing pattern, arm and leg movements, and state of arousal, each 0 to 1, totaling 0 to 7.

Combining two or more analgesic drugs or techniques with different mechanisms, such as an opioid plus acetaminophen or a nerve block, to improve pain relief while limiting dose-related adverse effects of any single agent.

A decreased response to an opioid after repeated dosing, so that a higher dose is required to produce the same analgesic effect; it is expected, distinct from addiction, and managed by dose adjustment.

Reduced bowel frequency or difficulty passing stool caused by opioid action on gut receptors; it does not habituate, so prophylactic laxatives, often a stimulant plus osmotic agent, are started with around-the-clock opioids.

A short-acting opioid antagonist used to reverse respiratory depression or oversedation from opioids; in opioid-tolerant children it is titrated in small increments to restore breathing without precipitating severe pain or withdrawal.

A long-acting synthetic opioid that also antagonizes NMDA receptors and inhibits serotonin and norepinephrine reuptake, useful for neuropathic pain; its long and variable half-life requires careful titration and monitoring for accumulation.

Pain arising from injury or disease of the nervous system, often described as burning, shooting, or electric, and typically treated with adjuvant drugs such as gabapentin, pregabalin, tricyclics, or methadone rather than opioids alone.

A subjective sensation of difficult or uncomfortable breathing that may occur with normal blood gases; in advanced illness it is managed with opioids, positioning, airflow, and treatment of reversible causes such as effusion or anemia.

Excessive drooling from impaired swallowing rather than increased saliva production; management includes repositioning, suction, anticholinergic medications such as glycopyrrolate, and sometimes botulinum toxin injection or radiation.

Explicit, shared statements of what matters most to a child and family in a given clinical situation, such as comfort, time at home, or length of life, which guide treatment choices and are revisited as illness changes.

A collaborative process in which clinicians share evidence and uncertainty, families share values and preferences, and both agree on a plan; it is neither clinician-dictated nor a simple menu of options.

A child's agreement to a proposed intervention after developmentally appropriate explanation, sought alongside parental permission; it respects the child's emerging autonomy and may be withdrawn, though it is not legally binding.

Ongoing conversations and documentation of a family's preferences for future care, including resuscitation, hospitalization, and location of death, so that decisions can be honored when the child cannot speak.

A person legally authorized, usually a parent or guardian for a minor, to make healthcare decisions when the patient cannot; surrogates are asked to use substituted judgment or, for children, the best interest standard.

A six-step framework for delivering serious news: setting up the conversation, assessing perception, inviting the family, giving knowledge, responding to emotion, and summarizing strategy and next steps.

A trained professional who conveys meaning accurately between clinician and family, including nuance and emotion; ad hoc interpreters such as relatives, and machine translation, are avoided in serious conversations.

The ethical and legal benchmark for decisions made on behalf of a child, weighing benefits and burdens to determine what a reasonable person would choose for this child in these circumstances.

The concept that suffering includes physical, psychological, social, and spiritual dimensions that interact; relieving pain therefore requires attention to all components, not only nociception.

A principle holding that an action with a good intended effect, such as relieving suffering, may be permissible even if a foreseen but unintended bad effect, such as hastened death, occurs, provided the good is not achieved through the bad.

A structured inquiry into a family's beliefs, practices, sources of hope, and community, often using a tool such as FICA, to identify spiritual needs and supports that shape care preferences.

A lifelong stance of self-reflection, curiosity, and openness to a family's culture, recognizing one's own biases and the limits of one's knowledge rather than claiming competence in another's culture.

The experience of knowing the ethically appropriate action but being unable to carry it out because of institutional, legal, or interpersonal constraints; it can lead to burnout and should be addressed through ethics support.

The carefully titrated use of sedating medication to relieve refractory suffering in a dying patient, proportional to symptoms, with consent, and distinct from euthanasia because intent is symptom relief.

The planned discontinuation of interventions such as mechanical ventilation or vasopressors after a decision that burdens outweigh benefits, with premedication and comfort measures so the child does not suffer.

Removal of an endotracheal tube in a dying patient as part of comfort-focused care, preceded by opioid and sedative premedication and followed by close attention to secretions, breathing, and family presence.

A plan that prioritizes relief of pain, dyspnea, and other symptoms and minimizes burdensome tests and treatments, while continuing supportive care such as feeding by mouth, positioning, and family time.

Agitation, confusion, or distress near the end of life that may reflect pain, retained secretions, urinary retention, or medication effects; it is assessed for reversible causes and treated with calm reassurance and sedatives.

Audible noisy breathing from secretions in the upper airway in a dying patient; it is often not distressing to the patient but is eased by repositioning and anticholinergics, with reassurance to family.

Grief experienced before an expected death, including mourning losses already occurring and imagining life without the child; it can coexist with hope and does not preclude attachment or good caregiving.

A recognized condition of persistent, intense grief with yearning or preoccupation and functional impairment lasting well beyond expected cultural norms, roughly a year for adults and six months for children.

The view that healthy grief involves maintaining an ongoing relationship with the deceased through memories, rituals, and values, rather than severing ties and moving on.

The grief of a brother or sister, shaped by age, development, family roles, and often overlooked by adults; it calls for honest explanations, inclusion in rituals, and ongoing support.