Educational draft · awaiting clinical reviewThe full textbook explains uncertainty but does not replace live national or local guidance, specialist advice, or current prescribing information.
Palliative care for children and young people
Palliative and end-of-life care · UK scope · Sources checked 27 Aug 2026 · Clinical review pending
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Acute deterioration in a child with a palliative plan
A child can have both a life-limiting condition and a reversible emergency. The advance plan should clarify treatment ceilings but never replace assessment of airway, breathing, circulation, seizure, infection, device failure and pain.
Action: Use paediatric ABCDE care, retrieve the child-specific emergency plan, give prescribed seizure or symptom rescue and call paediatric emergency support when severity exceeds the home pathway. Confirm current parental and competent-child wishes where time permits and share baseline, devices, doses and escalation recommendations at handover.
Purpose and principles
Deliver developmentally appropriate, family-centred paediatric palliative care from diagnosis through transition or death, integrating active treatment, symptom relief, communication, education, safeguarding and lawful best-interests decisions across settings.
Children may have cancer, congenital anomalies, severe neurological impairment, metabolic or genetic disease, organ failure or uncertain diagnoses. Some conditions progress steadily; others create repeated crises over years. Eligibility therefore depends on symptom, decision and family need rather than an estimate that death is imminent. Perinatal palliative care can begin before birth when antenatal diagnosis indicates a life-limiting condition.
The child is a person within a family, not simply the object of parental decisions. Use developmentally appropriate language, pictures, play, augmentative communication, interpreters and repeated short conversations. Ask what the child knows, wants to know and wants clinicians to ask their parents privately. Adolescents need confidential space within normal safeguarding limits and explicit discussion of privacy, fertility, relationships and digital life.
Practice
Two practice questions
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Palliative and end-of-life careOriginal SBA
Starting paediatric palliative care
A ten-year-old with a progressive neuromuscular condition is still receiving disease-modifying treatment but has troublesome breathlessness, school absence and parental exhaustion. When is palliative referral appropriate?
Sources and review status5 sources · checked 27 Aug 2026 · clinical review pending+
Sources
Sources and review status
National guidance is shown before implementation-dependent detail. Apply principles in context and verify current guidance when a decision affects care. Source check completed 27 Aug 2026; clinical approval remains outstanding.
Decision-making law is nuanced. A young person aged 16 or 17 is generally presumed capable for many healthcare decisions, while a younger child may be Gillick competent for the specific decision. Parental responsibility enables consent but does not authorise treatment contrary to the child's interests. Refusal of life-sustaining treatment, conflict or uncertainty requires senior paediatric, legal and ethics input because the legal position differs from adult autonomy.
Assessment must include pain, breathlessness, seizures, tone, movement, sleep, feeding, gastrointestinal symptoms, secretions, skin, continence and distress. Establish the child's normal facial expression, vocalisation, movement and consolability with parents and school staff. Behavioural pain tools support observation but do not replace examination for fracture, retention, reflux, infection, dental disease or device complications.
An advance care plan should be concise and available to family, school, ambulance, emergency department, community nursing, hospice and specialist teams. It records diagnosis, baseline, communication, allergies, equipment, regular and rescue medicines, resuscitation and treatment recommendations, seizure or ventilation steps, preferred place and contact hierarchy. Review after growth, admission, new technology or a change in family preference.
Medicines require paediatric expertise. Dose by verified weight where appropriate, recalculate after growth or organ change and specify formulation, concentration, route, interval and maximum. Children with severe renal, hepatic or neuromuscular disease may be exceptionally sensitive. A syringe pump or transdermal patch does not remove the need for correctly calculated rescue. Confirm every regimen against the current BNFC and local paediatric palliative formulary.
Nutrition, ventilation and disease-modifying treatment may support life, participation or comfort while also causing burden. Discuss the concrete goal of each intervention and use time-limited trials when benefit is uncertain. Decisions to withhold or withdraw treatment should involve the child where possible, those with parental responsibility and the multidisciplinary team, with clear symptom planning and independent review for disagreement.
Family care includes siblings, separated parents, foster carers, grandparents and professionals who know the child. Assess sleep, money, transport, housing, employment, other children and the ability to manage equipment. Offer short breaks and hospice services early. Safeguarding responsibilities continue in palliative care; apparent non-adherence may reflect exhaustion or access barriers, but unexplained injury or coercion still requires formal assessment.
Preserve education and development. Coordinate an individual healthcare plan with nursery, school or college, including emergency medicines, trips, attendance flexibility and staff training. For adolescents, begin transition planning early with named paediatric and adult clinicians, uninterrupted equipment and medicine supply and explicit transfer of emergency documentation.
When death approaches, explain likely changes and ask about home, hospice or hospital without implying a guaranteed outcome. Plan verification, rapid response, organ or tissue donation enquiry where relevant and care after death. Offer memory-making, photographs, handprints, hair or recordings as genuine choices. Bereavement support should extend to siblings and be available after investigation or funeral milestones.
Key points
Paediatric palliative care begins when a life-limiting or life-threatening condition creates need; it can accompany curative, disease-modifying, intensive and experimental treatment.
First-line assessment asks the child what matters using their communication level, while separately exploring parental understanding, family priorities, siblings, school, culture and practical support.
Involve children and young people in decisions to the extent they want and can manage; age alone neither proves nor excludes decision-making competence.
Parents with parental responsibility usually participate, but treatment must remain in the child's best interests and serious disagreement requires early mediation, ethics, second opinion or court review.
Create a child-specific advance care plan covering likely crises, resuscitation, ventilation, seizures, feeding, place, transport, school, medicines and the professionals available at all hours.
Pain and symptom prescriptions are weight-, age-, route- and organ-specific; use paediatric formularies and specialist advice rather than scaling an adult anticipatory pack casually.
Assess pain through self-report where possible and behavioural or physiological change when communication is limited, comparing observations with the child's known baseline.
Support ordinary childhood: play, learning, friendships, privacy, risk taking and family activities are therapeutic goals, not optional extras after medical tasks.
Indications, selection and cautions
Early palliative need
A life-limiting diagnosis, persistent symptom, difficult decision, repeated crisis or major family burden justifies palliative involvement before the last phase.
Child-specific distress
Change in face, cry, posture, movement, sleep, play, feeding or consolability from the known baseline may express pain or fear.
Family-system strain
Sibling distress, parental sleep deprivation, financial hardship, conflict or equipment burden can undermine otherwise appropriate home care.
Decision complexity
Differing views among child, parents and clinicians about burdensome treatment require supported communication and early independent review.
Transition vulnerability
Approaching adult-service age without named clinicians, prescriptions, equipment ownership or an emergency plan risks abrupt loss of care.
Paediatric emergencyRed flag
Prolonged seizure, airway obstruction, device failure, severe respiratory distress, sepsis, uncontrolled pain or suspected abuse needs immediate event-specific action.
Red flags requiring action
Apnoea, cyanosis, stridor, exhaustion or failure of ventilatory equipment requires immediate paediatric airway support.
A seizure continuing beyond the child's rescue threshold needs the prescribed emergency medicine and escalation route.
Assessment before treatment
01First-line child and family goals assessmentFirst stepFirst line
Why
Elicit the child's views with suitable communication and assess parental understanding, siblings, culture, practical need and desired outcomes.
Interpretation and limitations
A shared goal directs treatment and identifies differing perspectives early enough for support and mediation.
02Multidimensional symptom assessment
Why
Combine self-report, behaviour, physiology, examination and family knowledge across pain, breathing, seizures, feeding, sleep and distress.
Interpretation and limitations
Change from the child's baseline guides investigation; behavioural difference is not automatically pain or disease progression.
03Weight, formulation and organ review
Why
Verify current weight, medicine concentration, route, renal and hepatic function and previous response before paediatric dosing.
Interpretation and limitations
Accurate inputs are the reference standard for safe individual prescribing and prevent concentration and growth errors.
04Advance care plan audit
Why
Check resuscitation, ventilation, seizure, feeding, emergency medicine, place and contact instructions across home, school and ambulance records.
Interpretation and limitations
A consistent reachable plan enables rapid goal-concordant care; conflict or expiry requires same-day correction.
Treatment approach
01Early integrationAdd palliative support without closing active optionsFirst stepA child has a life-limiting condition, significant symptoms, family need or complex decisions.+
1Introduce palliative care as an extra layer alongside the disease team and ask the child and family what would improve ordinary life now.
2Assess symptoms, communication, school, siblings, practical burden and likely crises and allocate a named coordinator.
3Review goals and services at developmental, disease and family transitions rather than waiting for a terminal prognosis.
02Individual symptom planUse child-specific assessment and prescribingPain, breathlessness, seizure, nausea, tone, secretion or sleep symptoms interfere with comfort or participation.+
1Identify mechanism and baseline using child report, family observation, examination and proportionate tests, treating reversible causes where worthwhile.
Complications, monitoring and follow-up
Review symptoms through self-report and the child's individual behavioural baseline rather than adult scales alone.
Recalculate weight-based prescriptions after growth, major fluid change, organ deterioration or formulation switch.
Check every emergency medicine concentration, expiry, route and administrator across home, school, respite and transport.
Track play, school, sleep, communication and family activities as meaningful treatment outcomes.
Ask siblings and caregivers about understanding and distress at planned intervals, not only during crisis.
Revisit capacity, competence and treatment preferences as development and communication change.
Audit transition responsibility until adult prescriptions, equipment and emergency contacts are demonstrably active.
Special situations
Palliation can begin antenatally
Planning before birth can protect bonding, symptom care and parental choice while obstetric and neonatal options remain open.
Parents are expert observers
They often recognise subtle baseline change, while clinicians retain responsibility to examine and avoid diagnostic overshadowing.
Play is an outcome
A treatment that permits one valued activity may matter more to a child than a small physiological improvement.
Competence is decision specific
A young person may understand one symptom choice but need more support for a complex life-sustaining treatment decision.
Concentrations create hidden risk
Two liquids with the same medicine name can deliver very different doses, making formulation verification essential at every transfer.
Transition needs overlap
A referral letter cannot replace a period in which paediatric and adult teams jointly own medicines, devices and emergencies.
Common pitfalls
01
Presenting paediatric palliative care as relevant only after curative treatment stops.
02
Speaking only to parents when the child can and wants to participate.
03
Assuming a non-speaking child cannot report distress or exercise preference.
04
Scaling an adult anticipatory medicine set by intuition rather than a paediatric formulary.
05
Copying a dose without checking the child's current weight and liquid concentration.
06
Treating every behavioural change as progression without checking pain, infection, retention or device problems.
07
Allowing parental agreement to replace a best-interests assessment.
08
Waiting until severe conflict before seeking mediation and second opinion.
09
Removing school and play goals from the care plan because the illness is advanced.
10
Ending paediatric support before adult prescriptions, equipment and emergency response are functioning.
Plan transition to adult services early for young people likely to survive beyond paediatric care, including prescriptions, equipment, emergency plans, capacity and named coordinators.
After a child's death, offer culturally responsive care, memory choices, sibling support, clear investigation information and continuing bereavement contact without imposing keepsakes or viewing.
New fever, poor perfusion, reduced urine or marked baseline change can indicate sepsis despite chronic complex disability.
An unexplained fracture, injury, medicine discrepancy or unsafe caregiver behaviour remains a safeguarding concern.
Doses copied from an old weight or different concentration can cause severe under-treatment or toxicity.
Serious treatment disagreement should not be left until the planned withdrawal day or emergency collapse.
A child expressing fear, coercion or a wish to speak without family present requires a safe confidential opportunity.
05Development and participation review
Why
Assess play, education, friendship, communication, privacy, mobility and activities valued by the child.
Interpretation and limitations
Treatment benefit should include participation and development, not physiology or survival alone.
06Transition-readiness assessment
Why
Map adult clinicians, funding, equipment, prescriptions, consent, emergency response and self-management before paediatric discharge.
Interpretation and limitations
Unassigned responsibility predicts treatment interruption and warrants a coordinated overlap rather than a single transfer date.
2
Use current paediatric and palliative formularies for weight, formulation, route and organ-adjusted treatment with explicit rescue and monitoring.
3Measure comfort and child-valued function and revise for growth, adverse effects, swallowing, devices and changing alertness priorities.
03Shared best-interests decisionResolve burdensome treatment choices lawfullyBenefit from ventilation, nutrition, intensive treatment or another life-sustaining intervention is uncertain or disputed.+
1Support the child's involvement, assess competence or capacity and hear parents and professionals separately and together with interpreter or advocate support.
2Define benefits, burdens, alternatives and the child's values, obtaining second opinion, mediation and clinical ethics input early when views diverge.
3If serious disagreement persists, seek legal advice and court determination before an avoidable crisis while continuing full symptom and family care.
04Transition or last-days careMaintain continuity through major changeThe young person approaches adult services or the child appears to be entering the last days.+
1For transition, overlap named services, prescriptions, equipment, capacity support and emergency plans; for dying, review reversibility, place, medicines and family wishes.
2Communicate the current plan to every responder and preserve play, privacy, relationships, rituals and symptom access alongside technical care.
3After death or transfer, provide a warm handover, sibling and caregiver support and a clear route for bereavement or unresolved clinical questions.