ABP Pediatric Palliative cheat sheet

Palliative care is interdisciplinary care for serious illness at any stage, delivered alongside disease-directed treatment; hospice is a specific model limited to a prognosis of six months or less if the disease follows its expected course.

The 2010 Affordable Care Act concurrent-care provision requires state Medicaid programs to let children under 21 receive hospice services without forgoing curative or life-prolonging treatment; adults must waive curative care to elect hospice.

The WHO pediatric definition holds that palliative care is the active total care of the child's body, mind, and spirit, begins when illness is diagnosed, and continues regardless of whether the child receives disease-directed treatment.

Core interdisciplinary team members are physician, nurse, social worker, and chaplain; pediatric teams typically add a child life specialist, psychologist, pharmacist, music or art therapist, and bereavement coordinator.

US hospice benefit levels of care: routine home care, continuous home care (at least eight hours a day), general inpatient care for uncontrolled symptoms, and respite care limited to five consecutive days.

Medicare hospice conditions of participation require the interdisciplinary group to meet at least every 14 days to review and revise each patient's plan of care.

Hospice certification runs in periods of 90 days and then 60 days; pediatric eligibility is often accepted at a six-month prognosis, but trajectories for neuromuscular, chromosomal, and congenital heart disease are unpredictable.

Referral triggers include any life-limiting diagnosis, two or more hospitalizations within six months, declining functional status, uncontrolled symptoms, or family request; palliative care referral never requires stopping treatment.

Perinatal palliative care starts at prenatal diagnosis of a life-limiting fetal condition and includes birth planning, comfort-focused delivery room care, memory-making, and sibling and family support.

Pain tools by age: NIPS or N-PASS for neonates; FLACC from about two months to seven years; Wong-Baker FACES or the 0-10 numeric rating scale from about eight years; COMFORT-B for ventilated children; r-FLACC for children with cognitive impairment.

The WHO pediatric analgesic ladder has two steps: mild pain is treated with acetaminophen or an NSAID; moderate-to-severe pain is treated with an opioid, with adjuvants added at either step, and severe pain is treated promptly rather than escalated slowly.

Acetaminophen 10-15 mg/kg PO every 4-6 hours (maximum 75 mg/kg/day, not exceeding 4 g/day); ibuprofen 10 mg/kg every 6-8 hours (maximum 40 mg/kg/day); NSAIDs are avoided with thrombocytopenia, renal impairment, or bleeding risk.

Starting IV morphine in an opioid-naive child is 0.05-0.1 mg/kg every 2-4 hours; in neonates 0.02-0.05 mg/kg with longer intervals because of reduced clearance; a stimulant laxative bowel regimen is started with the first opioid dose.

Equianalgesic anchors: 10 mg IV morphine equals 30 mg oral morphine, 1.5 mg IV hydromorphone, 7.5 mg oral hydromorphone, and 100 mcg IV fentanyl; the new opioid is reduced 25-50% for incomplete cross-tolerance.

Codeine and tramadol are contraindicated in children under 12 years and after tonsillectomy or adenoidectomy at any age because CYP2D6 ultrarapid metabolism can cause fatal respiratory depression.

Morphine neurotoxicity (myoclonus, hyperalgesia, agitated delirium) reflects accumulation of morphine-3- and morphine-6-glucuronide; management is opioid rotation to fentanyl or methadone plus hydration, not dose escalation.

Dyspnea is treated first with low-dose opioids; oxygen helps only documented hypoxemia; fans, positioning, and benzodiazepines address the anxiety component, and dexamethasone helps dyspnea from tumor, lymphangitic spread, or superior vena cava obstruction.

Nausea management is mechanism-matched: metoclopramide for gastroparesis, ondansetron or dexamethasone for chemotherapy, haloperidol or olanzapine for chemical and metabolic causes, scopolamine for vestibular causes, and treatment of constipation and raised intracranial pressure.

SPIKES for breaking bad news: Setting and listening, Perception of what the family already knows, Invitation to receive information, Knowledge delivered in small chunks, Empathy, and Strategy plus summary.

NURSE statements deliver empathy: Naming the emotion, Understanding, Respecting, Supporting, and Exploring; they signal presence without prematurely offering solutions or false reassurance.

Developmental understanding of death: under two years no concept; ages two to six treat death as temporary and magical; ages six to eleven grasp finality but not universality to the self; from about eleven, death is abstract and personal.

In pediatrics, parents provide informed permission and the child provides assent from roughly seven to twelve years; adolescents may consent alone under mature-minor or emancipated-minor statutes that vary by state, and reproductive and mental health exceptions differ.

Most children with cancer know their diagnosis and prognosis; open, honest communication is associated with less anxiety and better adjustment than silence, and the child's own questions signal readiness for information.

Hope-laden requests such as 'I wish he could walk again' are answered with a wish statement ('I wish that too') that acknowledges emotion and shared goals without promising a medically impossible outcome.

Goals-of-care documentation should record which specific decisions were made, who participated, what the child said, the named surrogate decision-maker, and the code status chosen.

Professional interpreters, teach-back, and fifth- to sixth-grade reading level written materials are used; family members, especially children, are not used as ad hoc interpreters.

Time-limited trials specify a treatment, a measurable goal, and a review date, allowing families to attempt intensive therapy without committing indefinitely and framing discontinuation as a planned consequence of not meeting criteria.

Total pain, described by Cicely Saunders, holds that physical, psychological, social, and spiritual suffering interact; treating only nociception fails when the other domains remain unaddressed.

FICA spiritual screening: Faith or belief, Importance of spirituality, faith Community involvement, and how care should Address spiritual needs; SPIRIT and HOPE are alternative screening mnemonics.

Four principles of biomedical ethics are respect for autonomy, beneficence, nonmaleficence, and justice; in pediatrics, autonomy is expressed through assent and emerging capacity, while parents act as surrogate decision-makers.

The best-interests standard applies when a child has never had capacity; substituted judgment applies only when the patient previously expressed relevant values, which is why adolescent statements should be documented.

Withholding and withdrawing life-sustaining treatment are widely held to be ethically equivalent when the goal is comfort; intent and proportionality, not the act-omission distinction, determine permissibility.

Medical futility is better termed potentially inappropriate treatment; the accepted process is clarifying goals, trying time-limited trials, ethics consultation, and institutional due process, with unilateral limitation and court involvement rare.

Grief models used in practice: Worden's four tasks of mourning, the Dual Process Model of oscillation between loss-oriented and restoration-oriented coping, and continuing bonds as normative rather than pathological.

The Kubler-Ross stages are not a prescribed sequence and do not predict a family's course; they describe common reactions that may coexist or recur.

Cultural truth-telling norms vary; some families in collectivist traditions prefer that relatives receive prognostic information first, so information-sharing preferences are negotiated explicitly instead of assuming full disclosure.

Signs of active dying over hours to days: mottling and cool extremities, declining urine output, Cheyne-Stokes respirations, apnea, terminal secretions, obtundation, and loss of interest in food and fluids.

End-of-life medication review stops preventive and burdensome drugs (statins, vitamins, some anticonvulsants) and converts essential symptom drugs to subcutaneous or intravenous routes when swallowing fails.

Anticipatory prescribing at the terminal phase covers an opioid for pain and dyspnea, a benzodiazepine for agitation or seizure, an anticholinergic for secretions, an antipsychotic for delirium, and an antipyretic.

Terminal secretions are managed with glycopyrrolate, scopolamine, or atropine ophthalmic drops; deep suctioning and parenteral hydration typically worsen distress and are avoided.

Before terminal extubation, neuromuscular blockers must be fully discontinued and the child premedicated with an opioid plus benzodiazepine, because paralysis without sedation causes air hunger and awareness.

Comfort feeding is offered for pleasure, culture, and closeness but never forced; artificial nutrition and hydration are not obligatory when they add burden without comfort benefit.

DSM-5-TR prolonged grief disorder requires persistent, intense, functionally impairing grief at least 12 months after the death in adults and at least 6 months in children and adolescents.

Highest bereavement risk: death of a child, sudden or violent death (suicide, homicide, overdose), prior psychiatric illness, poor family functioning, and perceived lack of preparation for the death.

Medicare requires hospice programs to provide bereavement services to the family for 13 months after the death, with risk-stratified outreach, sibling support, and follow-up letters or calls to high-risk survivors.