Paediatric palliative care principles and referral — formative SAQs

SAQ 1 (10 marks)

A 6-year-old boy is diagnosed with high-risk, relapsed neuroblastoma. The oncology team plans further intensive treatment. The general paediatrician refers him to the palliative care team on the day of the relapse diagnosis. The oncology fellow asks why the referral is happening now rather than if treatment fails. [1] [2]

1. State the WHO definition of palliative care for children, and explain the parallel-care model that justifies referral at diagnosis rather than at end of life. (4) [5]
2. The family ask what palliative care will involve. Outline the four domains of suffering that the assessment and plan must address, and why the family is the unit of care. (3) [4]
3. Address the fellow's misconception that palliative care means giving up. Explain why palliative care is additive and parallel, and clarify the relationship between the palliative referral and any resuscitation or escalation decision. (3) [2] [4]

Model answer — SAQ 1

(1) WHO definition and the parallel-care model (4). The World Health Organization defines palliative care for children as the active total care of the child's body, mind and spirit, and the support of the family; it begins when illness is diagnosed and continues regardless of whether a child receives treatment directed at the disease. The parallel-care model holds that disease-directed (curative) therapy and palliative care run together on the same timeline: the curative trajectory rises and falls with the disease response, while the palliative trajectory starts at a low level at diagnosis and rises steadily as the disease progresses, peaking around end of life. The two lines run together, so palliative care is a layer added at diagnosis and carried through the illness, not a service switched to when cure fails. The child fits Together for Short Lives group 1 (curative treatment may fail), and the referral belongs at diagnosis so that palliative care is already in place if the curative path fails. [5] [1]

(2) The four domains and the family as unit of care (3). Total suffering has four interacting domains: physical (pain, dyspnoea, fatigue, nausea, seizures, sleep), psychological (mood, fear, coping, the child's understanding of the illness), social and family (who is at home, the primary carer, siblings, school, finances, travel, language and culture), and spiritual or existential (what gives the child's and family's life meaning, religious and cultural practice around illness and death, hopes and fears). The family is the unit of care because the illness and its trajectory act on parents, siblings and grandparents, and the child's experience of suffering is shaped by the family's coping, culture, language and resources; a plan built for the child alone will fail the child. [4] [5]

(3) Correcting the misconception (3). Palliative care is additive and parallel, not a replacement for active treatment; the child continues curative therapy and receives a palliative layer. Withdrawing disease-directed treatment is a separate best-interests decision, not a consequence of the palliative referral. Critically, the palliative referral and the resuscitation or escalation decision are separate acts: a child can have full escalation status and still benefit from palliative care, and a child with a limitation order still receives active comfort care. The evidence for early involvement is Wolfe's two cohorts: in 2000, children who died of cancer suffered substantially, and by 2008 earlier palliative involvement was associated with reduced suffering. [1] [2] [4]

SAQ 2 (10 marks)

A 4-year-old girl with severe cerebral palsy (dystonic, gastrostomy-fed, non-verbal) is admitted for the third time this year with aspiration pneumonia. Her mother is exhausted and asks "what will happen to her, and how long does she have?". The team has not yet involved palliative care or documented an escalation status. [5] [10]

1. Classify her condition under the Together for Short Lives (ACT) framework, give the defining features of that category, and name one other worked example. (4) [10]
2. Explain why suffering in this child is at high risk of being under-recognised, and how the assessment should be carried out. (3) [5]
3. Outline the immediate priorities in this admission, the role of the Paediatric Palliative Screening Scale (PaPaS), and the bereavement follow-through that should be planned. (3) [8] [11]

Model answer — SAQ 2

(1) ACT classification (4). The child fits Together for Short Lives group 4: an irreversible but non-progressive condition causing severe disability and susceptibility to health complications, with premature death likely from the complications (infection, respiratory failure, seizure) rather than from progression of the underlying disease. The defining features are that the brain insult is static but the complications recur and accumulate. Another worked example of group 4 is severe neurodisability after a hypoxic ischaemic insult, or a severe acquired brain or spinal cord injury. This contrasts with group 1 (treatment may fail, e.g. cancer), group 2 (premature death inevitable with long intensive treatment, e.g. cystic fibrosis, Duchenne), and group 3 (progressive, no cure, e.g. Batten disease, the mucopolysaccharidoses). [10] [5]

(2) Under-recognised suffering and assessment (3). Suffering in this group is the most under-recognised in paediatrics, because recurrent infections, pain, spasticity and distress are easily attributed to the child's baseline rather than treated as acute, treatable events. The assessment must combine observational pain and discomfort tools with the family's expert reading of the child — the mother usually knows first when something has changed — and must actively look for the treatable causes of distress (constipation, fracture, urinary retention, hip subluxation, seizures, painful procedures). A static plan written once will drift, so the symptom assessment is repeated as the trajectory shifts. [5]

(3) Immediate priorities, PaPaS and bereavement (3). The immediate priorities are to relieve suffering now (assess and treat pain, respiratory distress, secretions and agitation), ensure a named senior clinician is leading, and confirm the resuscitation and escalation status is documented and communicated — separate from the palliative referral. The Paediatric Palliative Screening Scale (PaPaS) of Bergstraesser is a validated bedside screening aid that scores the child on disease trajectory, symptom burden and expected care needs to flag the child who would benefit from a palliative care referral; a child who clearly fits a Together for Short Lives category is referred regardless of the score. The preferred place of care and death should be elicited and documented, and a bereavement pathway planned: anticipatory grief support now, support at and after the death, and structured follow-up of the parents and siblings in the weeks and months that follow. [8] [11] [4]