Communication, Shared Decision-Making, and Advance Care Planning
Frameworks
Use SPIKES for bad news: setting, perception, invitation, knowledge, empathy, and strategy or summary. Use NURSE for emotions: naming, understanding, respecting, supporting, and exploring. Use Ask-Tell-Ask: ask what the family already understands, tell information in small chunks, then ask what questions remain. Teach-back confirms understanding.
Shared decision-making
Decision-making combines clinician expertise, family values, and the child’s voice. Parents generally give permission and make final decisions for young children, but children should receive developmentally appropriate information and their assent or dissent should be sought as capacity evolves. Use the best-interests standard for infants. Consider interpreters, health literacy, and cultural context.
Advance care planning
Advance care planning is a longitudinal process, not a form. Explore goals and values, identify a surrogate, discuss CPR and DNR/DNI preferences, and document a palliative care plan. A DNR order means no resuscitation, not withdrawal of comfort care or all treatment. Name prognostic uncertainty and use the framing “hope for the best, prepare for the worst.” Prepare families for what to expect and make an action plan.
Traps
Collusion and withholding the diagnosis from the child; assuming parents always know the child’s wishes; saying “there is nothing more we can do” instead of “we will do everything to keep her comfortable”; equating DNR with stopping care; imposing personal values; using jargon; failing to document; treating one conversation as sufficient.
Worked example
Parents ask, “Is she dying?” Ask first: “What have you been told so far?” Then say honestly, “She is seriously ill and may not survive.” Pause. Ask, “What worries you most?” Then make a plan together, including comfort care and what to do if breathing changes.
Rule of thumb
Before any major conversation, ask permission and ask what the family already understands.