Paeds · professional-practice-and-evidence
Goals-of-care conversations and advance care planning for children
Also known as Advance care planning children · Goals of care paediatrics · Serious illness conversation paediatric · Resuscitation planning children · Paediatric palliative care communication · Voicing My CHOiCES · Family-centred advance care planning
Fellowship-level approach to goals-of-care conversations and advance care planning (ACP) for children with serious or life-limiting illness: goals-of-care frames, the ACP document ladder, the Serious Illness Conversation Guide, age-appropriate tools (family-centred ACP, Voicing My CHOiCES), prognostic disclosure, documentation, dissemination, disagreement, and the evidence base.
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Target exams
Red flags
- A seriously ill child with repeated admissions but no documented goals-of-care plan — the crisis conversation has been repeatedly deferred
- A resuscitation decision made in isolation during an arrest without a prior goals-of-care frame — the order precedes the conversation
- Prognosis withheld because the clinician fears taking away hope, leaving the family to make high-stakes choices in the dark
- A documented plan that no team member can find when it is needed at a crisis
- An adolescent developmentally able to take part who is excluded from the conversation about their own life and death
- Life-sustaining treatment continued by default because no one has convened the conversation to revisit it
Life stages
Care settings
Clinical exam formats
Board mappings
- General and Community Paediatrics
- Ethics and Professionalism
- Adolescent Medicine
- Renewed curriculum for first-year trainees from 2027 — Learning goal 12: Communication with patients, families, and health professionals
- Renewed curriculum for first-year trainees from 2027 — Learning goal 15: Essential general paediatrics
- Renewed curriculum for first-year trainees from 2027 — Learning goal 19: Ethics and professional behaviour
- Clinical Applications
- Long Cases
- Communication
- Ethics
- 1. Professional values and behaviours
- 2. Professional skills and knowledge: communication
- 4. Professional skills and knowledge: Patient management
- Palliative care: Holistic care of the life-limited child and family
- Foundation of Practice (FOP)
- Applied Knowledge in Practice (AKP)
- History
- Patient management
- General Pediatrics Content Outline — Domain 4: Psychosocial Issues
- General Pediatrics Content Outline — Universal Task 4: Management and Treatment
- General Pediatrics Content Outline — Universal Task 5: Communication
- Interpersonal and Communication Skills 1: Patient- and Family-Centered Communication
- Professionalism 1: Professional Behavior and Ethical Principles
- Patient Care 5: Patient Management
- Communicator
- Collaborator
- Professional
- Pediatrics: Foundations EPA #8 — Communicating assessment findings and management plans to patients and/or families
Overview & Definition
Picture a 12-year-old with relapsed leukaemia whose third admission in two months is for a febrile neutropenia that will not respond way first two did. Somewhere between the antibiotic order and the PICU referral, the team and the family need to answer a different question: what is the medical plan actually trying to achieve, and does it still match what this child and family most want? That is a goals-of-care conversation. It is not a single document and not a death sentence — it is the structured alignment of treatments with values, hoped-for outcomes and an honest sense of the trajectory. [1]
Advance care planning (ACP) is the broader, proactive process that surrounds that conversation for a child with a serious or life-limiting illness. It anticipates the decisions that are coming, captures what matters to the child and family, records it, and shares it so that when a crisis arrives the decision is already half-made. Done well, it moves the hardest choices out of a resuscitation bay and into a quiet room with the people who should be making them. [7] [9]
The common mistake is to treat goals of care as the thing you do when the child is dying. In children, most of the value sits upstream — in the oncology clinic, the complex-chronic medical home, and the PICU step-down — long before a terminal admission. The paediatric evidence is now strong enough that you can defend the practice at viva with randomised trials, not just expert opinion. [1] [2]
References12ShowHide
- [1]Rapoport A Goals of care conversations and advance care planning for paediatric patients living with serious illness. Paediatr Child Health, 2024.PMID 39539786
- [2]DeCourcey DD, Bernacki RE, Nava-Coulter B, Lach S, Xiong N, Wolfe J Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning. JAMA Netw Open, 2024.PMID 39058485
- [3]Needle JS, Friebert S, Thompkins JD, Grossoehme DH, Baker JN, Jiang J, Wang J, Lyon ME Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences: A Randomized Clinical Trial. JAMA Netw Open, 2022.PMID 35819787
- [4]Thompkins JD, Needle J, Baker JN, Briggs L, Cheng YI, Wang J, Friebert S, Lyon ME Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT. Pediatrics, 2021.PMID 33958436
- [5]Friebert S, Trujillo Rivera EA, Baker JN, Thompkins JD, Grossoehme D, Needle J, Lyon ME Pediatric Advance Care Planning and Adolescent Preparedness and Quality of Life: An RCT. Pediatrics, 2025.PMID 39821687
- [6]Lyon ME, Jacobs S, Briggs L, Cheng YI, Wang J Family-centered advance care planning for teens with cancer. JAMA Pediatr, 2013.PMID 23479062
- [7]Brunetta J, Fahner J, Legemaat M, van den Bergh E, Krommenhoek K, Prinsze K, Kars M, Michiels E Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review. Children (Basel), 2022.PMID 35740767
- [8]Bennett HE, Duke S, Richardson A Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences. BMJ Support Palliat Care, 2023.PMID 37201934
- [9]Loeffen EAH, Tissing WJE, Schuiling-Otten MA, de Kruiff CC, Kremer LCM, Verhagen AAE Individualised advance care planning in children with life-limiting conditions. Arch Dis Child, 2018.PMID 29127099
- [10]Doherty M, Gujral P, Frenette M, Lusney N, van Breemen C The Pediatric Serious Illness Conversation Program: Understanding challenges and experiences for clinicians after advance care planning training. Palliat Support Care, 2024.PMID 37288722
- [11]Wiener L, Bedoya S, Battles H, Sender L, Zabokrtsky K, Donovan KA, Thompson LMA, Lubrano di Ciccone BB, Babilonia MB, Fasciano K, Malinowski P, Lyon M, Thompkins J, Heath C, Velazquez D, Long-Traynor K, Fry A, Pao M Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions. Palliat Support Care, 2022.PMID 35876450
- [12]Linane H, Tanjavur B, Sullivan L A scoping review of guidelines and frameworks for advance care planning for adolescents and young adults with life-limiting or life-threatening conditions. Palliat Med, 2024.PMID 38600067