24.2 Grief and Bereavement

CPHON TCO VI.C tests grief and bereavement as a process, not as a second copy of the care-continuum end-of-life (EOL) section. Hospice versus palliative care, concurrent-care rules, do-not-resuscitate (DNR) or allow-natural-death (AND) orders, preferred location of death, and opioid titration for dying dyspnea live in Domain I. Here the nurse names who is grieving, how this age understands death, and what happens after the death—including the sibling who is hitting classmates, the parent who cannot get out of bed three months later, and the night-shift nurse who just lost a child they have known for two years.

A 4-year-old whose brother is dying of relapsed neuroblastoma, a 10-year-old with diffuse intrinsic pontine glioma (DIPG) who asks what the funeral will look like, and a unit that goes quiet after a long-term patient's death are VI.C patients.

Anticipatory grief is grief before the death

Anticipatory grief is the mourning that begins while the child is still alive: at a high-risk diagnosis, at relapse after hematopoietic stem cell transplant (HSCT), when imaging shows progression, or when goals shift. Parents may grieve the healthy child they expected, the graduation that will not happen, and the sibling's future without a playmate—while still bringing the child to clinic. That double track is not denial. Do not scold a parent for planning a funeral and asking about the next cycle in the same hour. Name the process: you can love the child in front of you and already miss the future you wanted.

Anticipatory grief can look like irritability, over-researching, withdrawal from friends, or clinging. It can also look like fierce advocacy. It is not a reason to stop offering presence, memory-making, or honest prognostic language the team has authorized.

Developmental understanding of death

Match language to cognition. Do not use "went to sleep" at any age if you mean died—that phrase terrifies toddlers and preschoolers at bedtime.

Infants have no adult concept of death; they sense absence, routine change, and caregiver distress. Keep feeding and holding predictable for remaining infants in the family.

Toddlers experience death as separation. They look for the person, protest, and regress. Reassurance is presence and simple words ("Papa died; he cannot come back; we will take care of you"), not a lecture on heaven unless that is the family's language.

Preschoolers (preoperational, magical thinking) often treat death as reversible—like a cartoon character who sits up again—and may believe their angry wish or a hit caused the illness. They need repetition that the death is not their fault and that dead means the body stopped working and will not come back. Expect the same question every day.

School-age children generally understand death as permanent, universal, and concrete. They ask what the body looks like, whether it hurts, and who will get the toys. Answer concretely. Personification ("a skeleton takes people") can appear; correct scary gaps without mockery. They may want details about the funeral and the cemetery.

Adolescents can use existential thought: unfairness, faith crisis, identity ("if I am the sibling who lived, who am I"), and awareness that they themselves could die. They still need peers and privacy. They may intellectualize, rage, or look "fine" at school and collapse at night. Do not assume adult understanding means they do not need a nurse in the room.

Sibling grief, parental grief, staff grief

Sibling grief is easy to miss because the unit's energy is on the ill child. Siblings may hit, fail spelling tests, complain of stomachaches, or become the "easy" child who never asks for anything (forgotten child). A teacher reporting new aggression in a 5-year-old whose brother is dying is describing grief until you prove otherwise. Invite the sibling to age-right presence, medical play, and legacy work (handprints, drawings, recorded messages). Do not automatically exclude them "for their own good." Do not force them into the room if they want the playroom with a trusted adult.

Parental grief after death is not a required march through Kübler-Ross stages. Shock, yearning, guilt about a missed fever or a trial decision, rage at God or at the team, and waves at holidays and the child's birthday are common. Marriages strain; remaining children still need breakfast. Tell parents there is no ONCC stopwatch for "how long grief should last." Complicated grief (prolonged, persistently impairing grief) is the pattern that stays stuck: inability to function for a prolonged period, inability to care for remaining children, suicidal thinking, or using substances to blot out the loss. That is a mental-health referral, not a pep talk. Ordinary intense grief in the first months is not automatically pathology.

Staff grief is expected. Pediatric hematology/oncology nurses accumulate deaths. Professionalism is not numbness. Use huddles, a moment in the room, a unit ritual, chaplain or employee assistance, and coverage so a wrecked nurse is not the only person admitting the next new leukemia. Do not gossip about the family as a coping style. Do not pretend the death did not happen when that family returns for a sibling's fever.

Memory-making, funerals, school notification, follow-up calls

Memory-making and legacy continue the meaning of the child's life: photographs, locks of hair, handprints or footprints, heartbeat recordings, quilts from T-shirts, letters, playlists. Offer; do not force. Some families want none of it. Document what was offered and chosen. This is grief work, not a substitute for the EOL symptom plan.

Funeral attendance is a prepared choice, not a default exclusion and not a requirement. Prepare children for what they will see, hear, and smell; assign an adult whose only job is the sibling; allow leaving early. A school-age child who wants to stand at the casket is not being morbid. A preschooler who wants to stay with a grandparent is not failing the family.

School notification is planned with the family: who may be told, how much, and whether a simple classmate script is wanted. The school nurse and counselor need facts the family authorizes—not a hallway rumor. Classmates of a child who died need honest, age-concrete language from adults the family chooses, not a sudden empty desk with no words.

Follow-up bereavement calls (and cards, or a visit if the program uses one) are nursing and program work after a death. Many teams reach out in the first days, around a month, at holidays, and near the anniversary. Do not invent a single ONCC-required calendar. Teach the principle: the relationship does not end at the morgue. Ask how the siblings are sleeping. Offer bereavement groups and counseling referrals. A parent who says they cannot get out of bed and the other children have missed a week of school needs more than "time heals."

The CPHON product is a sibling whose behavior is read as grief, a preschooler who is told the death is not their fault, a school-age child who may choose a prepared funeral, a family who gets a bereavement call, a complicated-grief referral when function collapses, and a staff group that debriefs instead of swallowing the loss.