Paeds · pain-palliative-and-end-of-life-care
Paediatric palliative care principles and referral
Also known as Paediatric palliative care · Children's palliative care · Palliative care principles in children · PPC referral and the parallel-care model · ACT categories of life-limiting conditions · Together for Short Lives framework
Fellowship-level approach to the principles and referral of paediatric palliative care: the WHO definition, the parallel-care model, the four Together for Short Lives (ACT) categories of life-limiting and life-threatening conditions, the epidemiology of serious paediatric suffering, the referral triggers including the Paediatric Palliative Screening Scale (PaPaS), the whole-child and family assessment across the four domains, care across home, hospital and hospice, bereavement follow-through, and the regional models across ANZ, the UK, the US and Canada.
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Red flags
- Equating palliative care with giving up, which leads to late referral and untreated suffering
- Referring only at end of life, after the months when palliative care could have helped most
- Introducing palliative care as a replacement for disease-directed therapy rather than a parallel layer
- Under-recognising pain and distress in the non-verbal or cognitively impaired child
- Defaulting to full resuscitation against the child's best interests because no status was documented
- Using a family member as interpreter for a high-stakes palliative care conversation
- Losing contact with the family at the death, leaving siblings and parents unsupported in bereavement
- Treating the palliative referral and the resuscitation decision as the same thing
Life stages
Care settings
Clinical exam formats
Board mappings
- General and Community Paediatrics: recognise the child who needs palliative care
- Professional practice and ethics: principles of paediatric palliative care
- Current 2026 PREP curriculum — Learning goal 12: Communication with patients, families, and health professionals
- Renewed curriculum for first-year trainees from 2027 — Learning goal 9: Clinical assessment and management of life-limiting illness
- Professional practice: principles of paediatric palliative care and timely referral
- General and Community Paediatrics
- Clinical Applications
- Ethics, law and professional practice in serious paediatric illness
- Long Cases — the child with a life-limiting or life-threatening condition
- Short Cases — symptom assessment in the non-verbal child
- Communication stations — introducing palliative care and referral to a family
- 4. Professional skills and knowledge: Patient management
- 1. Professional values and behaviours
- 8. Safeguarding and holistic care of the child with serious illness
- Applied Knowledge in Practice (AKP)
- Foundations of Practice (FOP)
- Principles of paediatric palliative care and referral
- Communication
- History and management of the child with a life-limiting condition
- Clinical assessment of symptoms and suffering
- General Pediatrics Content Outline — Domain: Ethics and palliative care
- General Pediatrics EPA 10: Leading interprofessional teams to provide collaborative, family-centered care
- Principles and referral mechanics of paediatric palliative care
- Patient Care: family-centred care of the child with serious illness
- Interpersonal and Communication Skills 1: Patient- and Family-Centered Communication
- Systems-Based Practice: multidisciplinary and home-based palliative care
- Medical Expert
- Communicator
- Collaborator
- Pediatrics: principles of paediatric palliative care and timely referral
Overview & Definition
Picture the eight-year-old six months into treatment for high-risk neuroblastoma whose pain is now waking him at night, the four-year-old with severe cerebral palsy and recurrent aspiration pneumonia whose mother is exhausted, and the neonate with a prenatally diagnosed trisomy 18 in the delivery room. These three children share one thing: each has a life-limiting or life-threatening condition that would be eased by a palliative approach, and each is at risk of receiving it too late. [1] [3]
The World Health Organization defines palliative care for children as the active total care of the child's body, mind and spirit, and it adds that this care also involves giving support to the family. It begins when illness is diagnosed, and it continues regardless of whether a child receives treatment directed at the disease. That last clause is the whole point: palliative care is not what you switch to when cure fails — it is a layer you add at diagnosis and carry through the illness. [5] [7]
The discipline rests on three commitments. It relieves suffering in four interacting domains — physical symptoms, psychological distress, social and family circumstance, and spiritual or existential concern. It treats the family as the unit of care, because the child's suffering and the family's coping shape each other. And it is delivered by a multidisciplinary team, in whatever setting best meets the child's needs — home, ward, intensive care, hospice or school. [4] [5]
References11ShowHide
- [1]Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz J, Emanuel EJ, Weeks JC Symptoms and suffering at the end of life in children with cancer. N Engl J Med, 2000.PMID 10655532
- [2]Wolfe J, Hammel JF, Edwards KE, Duncan J, Comeau M, Breyer J, Aldridge SA, Grier HE, Berde C, Dussel V, Weeks JC Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol, 2008.PMID 18375901
- [3]Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics, 2001.PMID 11389297
- [4]Section on Hospice and Palliative Medicine and Committee on Hospital Care Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations. Pediatrics, 2013.PMID 28448256
- [5]Himelstein BP Palliative care for infants, children, adolescents, and their families. J Palliat Med, 2006.PMID 16430356
- [6]Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Jiang Kwete X, Arreola-Ornelas H, Gómez-Dantés O, Rodriguez NM, Alleyne GAO, et al Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report. Lancet, 2018.PMID 29032993
- [7]Klick JC, Hauer J Pediatric palliative care. Curr Probl Pediatr Adolesc Health Care, 2010.PMID 20638035
- [8]Bergstraesser E, Paul M, Rufibach K, et al. The Paediatric Palliative Screening Scale: Further validity testing. Palliat Med, 2014.PMID 24280277
- [9]Simon TD, Berry J, Feudtner C, Stone BL, Sheng X, Bratton SL, Dean JM, Srivastava R Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics, 2010.PMID 20855394
- [10]Shaw KL, Brook L, Mpundu-Kaambwa C, et al. The Spectrum of Children's Palliative Care Needs: a classification framework for children with life-limiting or life-threatening conditions. BMJ Support Palliat Care, 2015.PMID 24644200
- [11]Bluebond-Langner M, Beecham E, Candy B, Langner R, Jones L Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy. Palliat Med, 2013.PMID 23612958