Paediatric Palliative Care
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Direct answer
Paediatric palliative care is, per the World Health Organization, the active total care of the child's body, mind and spirit — begun at diagnosis, delivered alongside disease-directed treatment, and supporting the family whether the child survives or not; it is in no way reserved for the terminal phase. The demand in India comes from four large groups: children with cancer, progressive neuromuscular diseases such as spinal muscular atrophy and Duchenne muscular dystrophy, cerebral palsy with complex needs, and congenital conditions such as neural tube defects. The technical core is symptom control — pain built rationally on the WHO two-step ladder with oral morphine as the strong opioid of choice — while the human core is honest, developmentally appropriate communication and structured support for parents and siblings. In India this is delivered through the National Programme for Palliative Care, Kerala's community networks, and home-based care.
What you must remember
- WHO two-step ladder for children (2012): step one for mild pain — paracetamol 15 mg/kg every 4 to 6 hours or ibuprofen 10 mg/kg every 6 to 8 hours; step two for moderate-to-severe pain — strong opioids, titrated, with morphine the drug of choice; no weak-opiate intermediate step in children.
- Morphine arithmetic: oral immediate-release morphine starts around 0.15 to 0.3 mg/kg every 4 hours in opioid-naive children; breakthrough pain is treated with roughly one-sixth to one-tenth of the total daily dose, repeatable hourly; once stable, convert to sustained-release twice daily.
- Codeine and tramadol are out: codeine is contraindicated below 12 years (and in breastfeeding mothers) because CYP2D6 ultra-rapid metabolisers convert it to lethal morphine surges — a modern pharmacology favourite; tramadol is similarly discouraged in young children.
- Adjuvants carry the syndrome-specific load: gabapentin or amitriptyline for neuropathic pain, diazepam or baclofen for spasm, dexamethasone for raised intracranial pressure and bone pain, hyoscine for terminal secretions, and oxygen titrated to comfort, not saturation targets.
- Symptom set beyond pain: dyspnoea, nausea and vomiting, constipation (anticipate with any opioid — a stimulant laxative from day one), fatigue, feeding difficulty at end of life (parental distress is the target, not the calorie count), and seizures.
- Indian anchors: the National Programme for Palliative Care (NPPC) under the National Health Mission; the 2014 amendment to the NDPS Act that recognised morphine as an essential narcotic drug, simplifying hospital licensing; Kerala's Neighbourhood Network in Palliative Care as the globally cited community model; and District Early Intervention Centres linking disability support.
Walking one case through the whole discipline
An eight-year-old with relapsed neuroblastoma has diffuse bone pain, sleeps badly and has stopped walking. Pain assessment (a Faces scale, since he can self-report) scores 7 of 10 — moderate to severe, so the ladder goes straight to step two: oral morphine 2.5 mg every 4 hours for a 20 kg child with breakthrough doses of similar size, plus a stool softener-stimulant from day one. Over three days the dose is titrated upward in 30 to 50 per cent steps until he sleeps and watches cartoons; he is then converted to twice-daily sustained-release morphine. Neuropathic burning in a leg adds gabapentin.
Simultaneously the parents are told, in a scheduled family meeting and without euphemism, that the disease is no longer curable — the goal shifts to comfort at home, and the team explicitly says "we will not abandon you", the single reassurance Indian families most need. A home-care plan is written out — who to call, which symptoms mean what, when to increase which drug — and the sibling, often the forgotten patient, gets a conversation of his own. Weeks later, a bereavement call closes the loop.
Where students slip
The likeliest wrong answer is conceptual — treating palliative care as terminal care, when in childhood cancer and neuromuscular disease it should start at diagnosis and run concurrently with active treatment. The second is dosing fear: under-dosing morphine "because of respiratory depression" condemns a child to pain; tolerance to respiratory depression develops quickly, so the correct method is titration, not avoidance. The third slip is the parents-versus-child truth question: Indian practice long favoured concealing the diagnosis from the child, but an informed child copes better with procedures and death, so the modern answer is developmentally graded honesty — a nuance worth voicing in a viva.
Frequently asked questions
When should palliative care begin in a child with a life-limiting illness?
At diagnosis, running concurrently with disease-directed therapy — not after treatment fails — because symptom burden and family distress begin at the first consultation.
What are the two steps of the WHO analgesic ladder for children?
Step one is paracetamol or ibuprofen for mild pain; step two is a strong opioid, usually oral morphine, for moderate-to-severe pain — there is no codeine intermediate step.
Why is codeine contraindicated in children under 12?
CYP2D6 ultra-rapid metabolisers convert codeine to morphine unpredictably and can reach fatal concentrations, so regulators contraindicated it below 12 years.
How is breakthrough pain dosed in a child on oral morphine?
Give about one-sixth to one-tenth of the total daily dose as immediate-release morphine, repeatable after an hour if needed.
What is the Kerala model of palliative care?
A community-based network of trained volunteers and nurses delivering home-based long-term and end-of-life care, supported by primary health centres — the most cited Indian contribution to global palliative care.