Recognise
Identifying which babies, children, and young people will benefit from a palliative care approach is the first step in ensuring they receive holistic, timely support.
This section focuses on recognition as a process that moves away from rigid prognostic timelines to focus instead on patterns of care needs and clinical uncertainty. Please note that the term ‘children’ covers those in utero, babies, children and young people.
Category A: Life-threatening conditions
Clinical Definition
Conditions for which disease-modifying or life-prolonging treatment may be available but may fail, or where intensive therapies and interventions are required to sustain or prolong life. These conditions carry a significant risk of premature death even if treatment is pursued.
Clinical Characteristics
This can include situations where:
- Curative treatment exists but has a high chance of failure or non-response.
- Child requires intensive or high-risk interventions to maintain organ function or survival.
- Treatment decisions involve weighing the anticipated or likely burdens and benefits due to uncertain outcomes.
- There is significant risk of sudden, unpredictable deterioration.
- Situations where survival following birth or a specific intervention is uncertain.
Clinical Examples (not exhaustive)
- Childhood cancers with uncertain response to treatment, such as relapsed neuroblastoma.
- Complex congenital cardiac conditions requiring ongoing intervention.
- Congenital conditions where outcomes may be uncertain.
- Severe immunodeficiency requiring high-risk therapy.
- Congenital anomalies where interventions may help but may also fail (e.g., certain cardiac or metabolic conditions).
- Neonatal and antenatal situations where survival or viability of the baby is uncertain before or after birth.
- Children undergoing or eligible for organ transplant where treatment may succeed but carries significant risk of failure or complications.
Long-term remission or sustained recovery may remove the need for ongoing palliative involvement. Review should occur at defined treatment milestones.
Category B: Life-shortening conditions
Clinical Definition
Conditions where death in childhood or early adulthood is likely due to the progressive nature of the condition or the absence of effective disease-modifying or curative treatment.
Clinical characteristics
This can include situations where:
- The condition is expected to shorten life
- The child experiences progressive decline over time
- The focus increasingly includes quality of life and symptom management
Clinical examples (not exhaustive)
- Neurodegenerative conditions, such as spinal muscular atrophy type 1.
- Progressive genetic or metabolic conditions, such as Batten disease or Sanfilippo syndrome.
- Severe congenital anomalies with limited life expectancy, such as Trisomy 18 (Edwards Syndrome) or Trisomy 13 (Patau’s Syndrome) with significant multisystem involvement and uncertain trajectory.
- End-stage organ failure where transplant is not a viable option or where prognosis is limited.
It is acknowledged that trajectories within this category can be highly variable, particularly in perinatal palliative care, where uncertainty is common and early supportive involvement may be appropriate.
Category C: Severe medical complexity
Clinical Definition
Children with severe medical complexity and vulnerability, including multi-system involvement, profound neurological impairment, technology dependence, or extreme frailty, where there is a significant risk of life-threatening events.
Clinical characteristics
This includes situations where:
- A child relies on medical technologies for vital functions (e.g., ventilation, feeding, oxygen, shunts)
- There is high risk of sudden deterioration
- There is an increased susceptibility to life-threatening events, even when the underlying condition is static
- The child has significant functional impairment and care needs
- There is clinical frailty, particularly in adolescents transitioning to adult services.
Clinical examples (not exhaustive)
- A child with cerebral palsy with significant medical fragility and technology dependence.
- A child with hypoxic-ischaemic encephalopathy (HIE) with profound care needs.
- Multi-system conditions causing significant impairment.
- Severe neurological disability with marked functional limitation.
Some children with severe medical complexity will benefit from a palliative care approach, while others may be best supported through alternative specialist pathways. This distinction should be explored sensitively with families.
Notes for clinical use
The categories are designed to be used alongside:
- Clinical assessment
- Professional judgement
- Family discussion
- The surprise question
- The phases of care
Children and young people may move between categories over time. Some children may benefit from a palliative care approach for a limited period, while others may require longer-term involvement.
The Surprise Question
To help identify children who may benefit from a palliative care approach, clinicians often use the “surprise question”. Because clinical environments and child trajectories vary significantly, we propose a graded, spectrum-based approach. This better reflects clinical uncertainty and ensures that no child is missed across different service provisions.
The question
Ask yourself and your multidisciplinary team:
“Would you be surprised if this child were to die in the next… week/month/year/or before they reach adulthood?”
Where the answer to the question is ‘no’ and it would not be a surprise if the child died that should prompt the team to actively consider/discuss a palliative approach to care with the child (if appropriate) and their family.
Notes for clinical use
The surprise question must be used alongside the three categories of care, not as a replacement for them.
If the answer to any of these timeframes is “no” (meaning you would not be surprised), this should act as an immediate prompt to:
- actively discuss a palliative approach with the child and family.
- initiate parallel planning (planning for life alongside planning for deterioration).
- review or develop a current advance care plan (ACP).
Be mindful that adult services often use a narrower 6–12 month window. Using a graded approach helps clinicians better identify and advocate for young people as they move toward adult services.
While this question is a valuable tool for supporting clinical judgment and early recognition, further research is currently required to fully understand its validity and reliability within the specific field of children’s palliative care.
Complexitiy and eligibility
Families may describe their child as medically complex or feel that palliative care is appropriate. This toolkit supports professionals to distinguish between the complexity of care needs and the eligibility for specialist palliative care services.
Some children with complex needs will benefit from a palliative care approach, while others may be better supported through alternative specialist pathways. These conversations should always be handled sensitively, with families’ perspectives recognised and respected.
Perinatal and antenatal context
Recognition may occur during pregnancy. In cases of diagnostic uncertainty, life-limiting diagnosis or concerns regarding viability, a palliative approach should be considered alongside obstetric and neonatal management.
Uncertainty is common in perinatal pathways. Early multidisciplinary discussion is recommended. For more information about babies facing an uncertain prognosis and outcome please refer to the framework for palliative care perinatal medicine.
