2.2 End-of-Life Care

Transitioning into end-of-life care, not rewriting palliative nursing

A 15-year-old with progressive metastatic osteosarcoma has exhausted disease-directed options that match his goals. He wants fewer hospital nights, his younger brother in the room, and a clear plan if his heart stops. Domain I.A.3 tests end-of-life (EOL) care as a transition: eligibility concepts, setting, code status, comfort, and family presence. A later section covers broader palliative practice. Here the CPHON nurse is moving a child into dying care and choosing the setting that matches goals.

Palliative care versus hospice

Pediatric palliative care is an extra layer of quality-of-life support. It can start at diagnosis of a life-threatening illness—high-risk neuroblastoma, diffuse intrinsic pontine glioma (DIPG), relapsed leukemia after transplant—and continue through curative treatment, chronic illness, or dying. The palliative team helps with pain, dyspnea, nausea, sleep, spiritual distress, sibling needs, and goals-of-care language without requiring the family to stop chemotherapy.

Hospice is a service and often a payment/setting model for children whose illness is expected to be life-limiting and whose goals have shifted toward comfort and living the remaining time well. Eligibility is a clinical and regulatory judgment (prognosis framed in a limited time horizon, plus a desire for comfort-focused support), not a single laboratory value. In pediatrics, families may still be receiving transfusions, palliative radiation, or even disease-directed therapy.

Concurrent care is the idea the exam wants in general terms: under pediatric hospice rules, children—especially those covered by Medicaid or the Children's Health Insurance Program—may receive hospice services alongside disease-directed care rather than being forced to "give up" treatment to get a hospital bed, a home nurse, or a comfort medication kit. Private insurance varies. Do not memorize invented dollar caps, daily rates, or a specific Centers for Medicare & Medicaid Services (CMS) fee as a pass/fail fact. Teach the principle: referral to hospice in a child is not automatically a complete stop of oncology treatment.

A 3-year-old with relapsed neuroblastoma can have home hospice nursing and continue oral etoposide if that still serves a goal such as slowing painful progression. The nurse names both as compatible when the team and family choose them.

DNR, AND, and what those orders do not mean

Code-status conversations belong in the transition, not at the moment of arrest in a hallway.

• Do-not-resuscitate (DNR) means that if the child's heart or breathing stops, the team will not start cardiopulmonary resuscitation, intubation, or defibrillation as specified on the order.
• Allow natural death (AND) is language many pediatric teams prefer because it frames the same decision as permitting dying rather than listing only what will be withheld.
• Orders should specify what is wanted: oxygen for comfort, suctioning of the mouth, antibiotics for a distressing infection, blood for symptomatic anemia, transfer or no transfer.

A DNR/AND order is not an order to withhold morphine, hydromorphone, or a fan for air hunger. Families often fear "signing the paper means you will not treat my child." Translate: we will treat suffering; we will not use interventions that only prolong dying if that is not the goal.

Document who was present, what was explained, and where the portable order lives if the child will die at home (out-of-hospital DNR/AND per state process). Emergency medical services and the local emergency department need that paper, or they will default to full resuscitation.

Location of death is a preference to plan

There is no morally superior location. A 8-year-old with DIPG may die in the hospital because seizures frightened the parents at home; that is still a successful, family-centered death if symptoms were treated and the child was not left alone. Ask early: "If time is short, where would you want to be?" Revisit when symptoms or supports change.

Pain, dyspnea, and secretions at the end of life

Pain. Cancer pain at EOL is treated with around-the-clock opioids (morphine, hydromorphone, fentanyl; methadone in selected cases) plus breakthrough doses. Adjuvants such as gabapentin, dexamethasone for bone or viscus pain, and nonpharmacologic measures (positioning, heat, distraction, parent holding) still count. There is no arbitrary "maximum opioid" when the indication is unrelieved nociceptive or neuropathic dying pain; the limit is the child's comfort and the family's understanding of sedation as a possible effect. Treat myoclonus, constipation, and pruritus; do not abandon the opioid because of those effects.

Dyspnea. Air hunger is a symptom, not a saturation number. A cool fan, upright or parent's-chest positioning, oxygen if it comforts, and opioids are first-line. A low-dose benzodiazepine may help panic. Intubation is a goals discussion, not an automatic response to a falling pulse-oximeter reading in a child whose family has chosen AND.

Secretions. The "death rattle" is pooled oropharyngeal secretions in a child too weak to swallow, not drowning. Teach that before suctioning. Reposition; use glycopyrrolate, atropine drops, or scopolamine as ordered; avoid deep, frequent suctioning that causes gagging and distress. Mouth care and a dry towel under the cheek are often kinder than a Yankauer every 15 minutes.

A home-hospice 3-year-old with noisy breathing needs explanation and anticholinergic therapy, not an automatic PICU transfer for intubation, unless the family's goals have changed.

Siblings, memory making, and legacy work

Siblings are patients of the system even when they are healthy. Offer:

• Honest, age-concrete language ("the cancer cannot be stopped; we will keep her comfortable") rather than "going to sleep," which terrifies toddlers at bedtime.
• Choice about presence at the time of death, after preparation for sounds, color, and the still chest.
• Legacy: handprints, lock of hair, heartbeat recording, photos, artwork, a letter, a playlist, a quilt from favorite T-shirts.
• A trusted adult assigned to the sibling so parents can hold the dying child.

Do not exclude a 5-year-old "to protect memories." Exclusion often becomes the memory. Follow the sibling's cues; a child who wants to wait in the playroom is equally respected.

The CPHON nurse's job at this transition is to make the setting, the orders, the symptom plan, and the family's people match the child's dying, not to recycle the induction playbook until the last hour.