End of life care in children
Exam Tips
- In UK exams, prioritise structure: named MDT lead, child/family-centred communication, and regularly reviewed ACP are core marks.
- State that palliative care can start at diagnosis of a life-limiting condition; it is not restricted to the last days of life.
- Show safe prescribing language: weight-based dosing, route planning as oral intake fails, anticipatory PRN medicines, and explicit opioid/benzodiazepine cautions.
- Always mention psychosocial, spiritual, cultural, and bereavement support as part of total care, not optional extras.
- If asked about deterioration, include a brief check for reversible causes before attributing symptoms to terminal phase.
- See Figure: paediatric end-of-life communication framework and ACP cycle (typical undergraduate palliative care teaching diagram).
Definition
Paediatric end-of-life care is the planned, active care of infants, children, and young people with life-limiting or life-threatening illness when death is expected in the final phase of life (often days to months). It is delivered by a named multidisciplinary team and combines symptom control, shared decision-making, advance care planning, and family support before, during, and after death, with care tailored to the child’s developmental stage and family priorities.
Pathophysiology
The clinical decline is usually driven by progressive failure of one or more organ systems (for example neurological, respiratory, cardiac, metabolic, or malignant disease pathways), often with recurrent acute decompensations. Symptom burden reflects both tissue/organ dysfunction and treatment effects: nociceptive and neuropathic pain, dyspnoea from ventilatory mismatch or secretions, nausea from gut dysmotility/drugs, agitation from hypoxia, delirium or fear, and seizures in severe neurological disease. A useful framework is the paediatric 'total pain' model (physical, emotional, social, spiritual distress), where family stress and uncertainty can amplify symptom expression and suffering (see Figure: Total pain model in paediatric palliative care teaching resources).
Risk Factors
- Presence of a life-limiting condition (no realistic cure, premature death expected), e. g. progressive neuromuscular or neurodegenerative disease
- Presence of a life-threatening condition where curative treatment may fail, e. g. high-risk childhood cancer
- Age under 1 year (highest prevalence of life-limiting conditions in UK epidemiology)
- Congenital anomalies and severe neurological disorders
- Higher socioeconomic deprivation
- Ethnic patterning of prevalence in UK datasets (higher rates reported in some South Asian and Black groups), likely reflecting complex genetic, social, and healthcare-access factors
Clinical Features
Symptoms
- Escalating pain or distress despite usual therapy
- Breathlessness, noisy respiratory secretions, or reduced exercise/interaction tolerance
- Fatigue, weakness, reduced oral intake, weight loss
- Nausea/vomiting, constipation, dysphagia
- Anxiety, fear, low mood, agitation, sleep disturbance
- Intermittent or prolonged seizures in severe neurological disease
- Child/parent concerns about deterioration and preferred place of care/death
Signs
- Progressive functional decline and increasing dependence for personal care
- Altered conscious level, reduced responsiveness, or terminal agitation
- Tachypnoea or irregular breathing pattern (including apnoeic pauses pre-terminally)
- Peripheral shutdown signs near death (cool peripheries, mottling, weak pulse)
- Dehydration signs and minimal urine output in late phase
- Evidence of complex unmet family needs (communication barriers, psychosocial strain)
Investigations
Management
Lifestyle Modifications
- Provide child- and family-centred communication using developmentally appropriate methods (conversation, play, visual aids, digital tools, interpreters as needed)
- Ensure named lead clinician and coordinated MDT across hospital, community, hospice, school, and social care
- Create and regularly update ACP/anticipatory plans, including emergency contacts and out-of-hours plans
- Offer choice of place of care/death where feasible, with rapid access to community nursing and equipment
- Support emotional, cultural, and spiritual needs, including chaplaincy or equivalent support regardless of faith
- Offer planned respite/short breaks and proactive bereavement support before and after death; promptly update records after death to avoid unintended appointments
Pharmacological Treatment
Pain and breathlessness (opioid-based when needed)
- Morphine sulfate oral immediate-release 0.2-0.5 mg/kg every 4 hours; breakthrough dose usually 1/6 of total 24-hour opioid dose
- Morphine SC/IV 0.05-0.1 mg/kg every 2-4 hours PRN (or continuous infusion in specialist settings)
- Paracetamol 15 mg/kg every 4-6 hours (max usually 60 mg/kg/day in children; age-dependent maxima apply)
Titrate to effect and adverse effects; check prior opioid exposure and renal/hepatic function. Monitor sedation and respiratory depression risk, especially after dose escalation or with benzodiazepines. Prescribe laxative with regular opioids unless contraindicated.
Agitation, anxiety, terminal restlessness
- Midazolam buccal/SC/IV 0.05-0.1 mg/kg PRN (specialist protocols may use continuous infusion for persistent distress)
- Levomepromazine low-dose (e. g. 0.05-0.1 mg/kg PO/SC, specialist titration)
Exclude reversible triggers first (pain, urinary retention, constipation, hypoxia, fear, medication toxicity). Benzodiazepines and sedating antipsychotics can worsen respiratory suppression when combined with opioids; use senior/specialist oversight.
Respiratory tract secretions
- Glycopyrronium bromide SC 4 micrograms/kg every 4 hours PRN (max dose per administration depends on local protocol/age)
- Hyoscine butylbromide SC in weight- and age-adjusted specialist doses
Use when secretions are distressing to child/family; explain that noisy breathing does not always indicate suffering. Antimuscarinics can cause urinary retention, tachycardia, constipation, and thickened secretions.
Nausea and vomiting
- Cyclizine 1 mg/kg up to three times daily (usual single-dose max 50 mg)
- Ondansetron 0.15 mg/kg per dose (route and interval per age/weight guidance)
- Levomepromazine for refractory, multifactorial nausea (specialist dosing)
Match antiemetic to likely mechanism (chemical, vestibular, gastric stasis, raised ICP, bowel obstruction). Watch for QT prolongation risk and additive sedation depending on agent combinations.
Seizure control in end-of-life phase
- Buccal midazolam 0.3 mg/kg for prolonged seizure (max 10 mg per dose)
- Maintenance antiseizure medication continuation via feasible route (e. g. levetiracetam route switch) guided by specialist team
Use individual emergency seizure plans; escalate urgently for status epilepticus not responding to first-line treatment. Consider route changes early when oral intake is failing.
Complications
- Uncontrolled symptoms (pain, dyspnoea, agitation, seizures) causing avoidable distress
- Family psychological morbidity, including complicated grief
- Crisis admissions due to absent or outdated ACP/anticipatory medicines
- Medication-related harm (opioid toxicity, oversedation, anticholinergic effects, QT-related arrhythmia risk)
- Conflict or moral distress around goals of care if communication is delayed
- Care discontinuity during transition between hospital, community, hospice, and adult services
Prognosis
Prognosis is diagnosis-specific and often uncertain in timing, so parallel planning is essential: active disease-directed treatment may coexist with palliative goals for prolonged periods. In the final phase, outcomes are improved when there is early ACP, coordinated MDT input, anticipatory symptom prescribing, and continuous family support into bereavement.
Sources & References
🏥BMJ Best Practice(6)
✅NICE Guidelines(1)
- End of life care in children[overview]
📖Textbook References(17)
- David Randall PhD MRCP (Editor), John Booth PhD MRCP (Editor), K - Kumar and Clark's Clinical Medicine (2025, American Elsevier Publishing Co.) - libgen.li.pdf(pp. 60, 61)[context]
- David Randall PhD MRCP (Editor), John Booth PhD MRCP (Editor), K - Kumar and Clark's Clinical Medicine (2025, American Elsevier Publishing Co.) - libgen.li.pdf(pp. 61)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 910, 911)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 522)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 28, 29)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 27, 28)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 320, 321)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 521, 522)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 28)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 910)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 321, 322)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 520, 521)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 521)[context]
- [Oxford Medical Handbooks] Ian Wilkinson, Tim Raine, Kate Wiles, Anna Goodhart, Catriona Ha - Oxford Handbook of Clinical Medicine (2017, Oxford University Press) - libgen.li.pdf(pp. 909, 910)[context]
- [Williams, Bailey and Love's Short Practice of Surgery] Norman Williams, Christopher Bulstrode, P Ronan O'Connell - Bailey & Love's Short Practice of Surgery 26E (2013, CRC Press) - libgen.li.pdf(pp. 162)[context]
- [Williams, Bailey and Love's Short Practice of Surgery] Norman Williams, Christopher Bulstrode, P Ronan O'Connell - Bailey & Love's Short Practice of Surgery 26E (2013, CRC Press) - libgen.li.pdf(pp. 162)[context]
- [Williams, Bailey and Love's Short Practice of Surgery] Norman Williams, Christopher Bulstrode, P Ronan O'Connell - Bailey & Love's Short Practice of Surgery 26E (2013, CRC Press) - libgen.li.pdf(pp. 161, 162)[context]