Organ and tissue donation in children

Overview & Definition

A five-year-old sustains catastrophic traumatic brain injury. After optimisation, clinical examination suggests neurological death. The parents ask whether their child can help other children. The fellowship task is to move from this scene to a safe, ethical, documented plan that puts the child first while holding the family. [1] [2] [3]

Paediatric organ and tissue donation proceeds only after death is properly determined (neurological or circulatory), after a best-interests decision about life support that is independent of donation, and after a skilled, separated family approach that supports the family whether they accept or decline. [1] [2] [3]

This page is written so a candidate can answer examiner questions across definition, ethics, communication, documentation and escalation without reaching for another source. Regional frameworks differ in language, but the bedside sequence is stable: stabilise comfort, explore understanding, make a recommendation, share the decision, document, and escalate early when disagreement persists. [1] [2] [3] [4]

Classification

Classification is useful when it changes the conversation or the pathway. [1] [2] [3]

By death determination pathway. Donation after neurological determination of death (DBD); donation after circulatory determination of death (DCD). [1] [2] [3]

By tissue versus solid organ. Solid organs (heart, lung, liver, kidney, pancreas, intestine); tissues (cornea, skin, bone, heart valves). [1] [2] [3]

By decision outcome. Authorised donation proceeds; family declines; medical contraindication; logistical non-progression. [1] [2] [3]

These axes are complementary. A single child may sit in more than one cell, and the classification should be restated whenever the clinical trajectory changes. [1] [2] [3]

Epidemiology & Risk Factors

Life-limiting illness and end-of-life decisions are concentrated in intensive care, oncology, neurodisability and neonatal services, but general paediatricians meet the same decisions on the ward and in the community. [1] [2] [3]

Risk of conflict rises when prognostic communication has been delayed, when multiple teams give inconsistent messages, when trust has been damaged by prior care, and when cultural or spiritual needs have not been elicited. [1] [2] [3] [4]

[1] [2] [3]

Children with medical complexity and technology dependence account for a growing share of deaths in PICU cohorts, which increases the importance of advance care planning before crisis. [1] [2] [3]

Pathophysiology

The pathophysiology that matters for this topic is not only disease biology; it is the pathway from prognostic uncertainty to a best-interests judgement under emotional load. [1] [2] [3]

Neurological death is death of the brain as a whole, determined by strict clinical criteria plus apnea testing, with age-specific safeguards in infants and children. [1] [2] [3]

DCD follows withdrawal of life-sustaining treatment already decided on best-interests grounds; warm ischaemia time limits organ utility. [1] [2] [3]

The family approach is a skilled conversation, ideally by a trained requestor, after understanding of death is established. [1] [2] [3]

Understanding this pathway prevents two opposite errors: rushing a limitation decision before the family has understood the prognosis, and indefinitely postponing a decision that is already clear because the conversation feels hard. [1] [2] [3]

Clinical Presentation

The presentation is often a slow accumulation of burdens rather than a single dramatic moment: repeated admissions, escalating technology, loss of interactive ability, or a catastrophic event with no recovery trajectory. [1] [2] [3]

Families may present with hope for miracle recovery, fear of abandonment, guilt about giving up, or exhaustion after months of vigilance. Staff may present with moral distress when they judge ongoing treatment to be harmful. [1] [2] [3] [4]

Red-flag presentations include intractable disagreement, requests for potentially inappropriate treatment, adolescent refusal, and sudden collapse of parental coping. [1] [2] [3]

Differential Diagnosis

Not every request to do everything is a fixed demand for non-beneficial treatment. Differential considerations include misunderstood prognosis, incomplete symptom control, distrust, spiritual waiting for a ritual or relative, and decisional paralysis from grief. [1] [2] [3]

Likewise, not every staff wish to stop treatment is a completed best-interests analysis; countertransference, resource pressure and incomplete information must be examined. [1] [2] [3]

[1] [2] [3]

Clinical & Bedside Assessment

Assessment has two parallel tracks: the child's clinical trajectory and the family's understanding and values. [1] [2] [3]

For the child, document current treatments, burdens, residual awareness or comfort behaviours, trajectory over days to weeks, and whether a time-limited trial is still informative. For the family, explore what they have been told, what they understand, what they hope for, what they fear most, and who else must be in the room. [1] [2] [3] [4]

In the adolescent, assess decision-making capacity specifically rather than assuming absence of capacity from age alone. [1] [2] [3]

[1] [2] [3]

Investigations

Investigations at this stage exist only to answer a decision-relevant question. Non-contributory blood tests, imaging and monitoring that increase burden without changing the plan should be stopped as part of good care. [1] [2] [3]

When neurological prognosis is uncertain, targeted imaging or specialist review may support a time-limited trial framework. When death determination is required for donation pathways, only accepted paediatric testing protocols are used. [1] [2] [3] [4]

Management — Resuscitation

Resuscitation decisions are goals-of-care decisions made in advance when possible. [1] [2] [3]

If a child arrests without a prior plan, default emergency care proceeds while senior clinicians urgently clarify trajectory and family understanding. If a valid limitation plan exists, it is followed, and comfort measures are maximised. [1] [2] [3]

Never use a chaotic arrest as the first goals-of-care conversation if that conversation could have been held electively. [1] [2] [3]

Management — Definitive & Stepwise

1. Optimise the child and determine death correctly, or confirm a best-interests plan for withdrawal if DCD is considered. [1] [2] [3]

2. Refer early to the organ donation agency; do not wait until the family raises donation. [1] [2] [3]

3. Separate the death or withdrawal conversation from the donation conversation; use trained communicators. [1] [2] [3]

4. Support the family through theatre logistics or through decline, and continue bereavement care either way. [1] [2] [3]

[1] [2] [3]

Symptom control is not paused while ethics is consulted. Pain, dyspnoea, secretions and agitation are treated actively throughout. [1] [2] [3]

Documentation should name the people present, the best-interests reasoning, the treatments to continue, the treatments to limit or withdraw, the review points, and the escalation plan if consensus fails. [1] [2] [3] [4]

Specific Subtypes & Scenarios

DBD after catastrophic brain injury

Two examinations, apnea test, donor optimisation, family authorisation. [1] [2] [3]

Controlled DCD after withdrawal

Best-interests withdrawal first; planned location; stand-down if death is not timely. [1] [2] [3]

Tissue-only donation

May be possible when solid-organ donation is not; still requires sensitive approach. [1] [2] [3]

Neonatal donation pathways

Highly specialised, limited organs, strict determination standards. [1] [2] [3]

Complications & Pitfalls

Common pitfalls include delayed honesty, inconsistent messaging across teams, asking parents to carry the whole decision alone, treating withdrawal as ethically worse than withholding, and abandoning families who disagree. [1] [2] [3]

High-yield examiner traps

Do not equate parental demand with best interests. Do not treat withdrawing as morally worse than withholding. Do not ask parents to decide alone. Do not stop comfort care when life support is limited. Do not delay ethics involvement until conflict is toxic.

[1] [2] [3]

Legal risk rises when documentation is absent, when unilateral withdrawal occurs without due process in a contested case, or when a capable adolescent is excluded. [1] [2] [3]

Prognosis & Disposition

Prognosis discussions should be honest about uncertainty ranges and should separate physiological survival from meaningful recovery. [1] [2] [3]

Disposition after a limitation decision may be continued PICU comfort care, ward-based end-of-life care, hospice, or home with community palliative support, depending on symptoms, family preference and service availability. [1] [2] [3] [4]

Special Populations

Neonates require perinatal palliative partnership and parental holding opportunities. Adolescents require capacity assessment and inclusion. Children with disability require careful avoidance of ableist assumptions about quality of life. Indigenous and culturally diverse families require culturally safe communication and room for extended kinship decision structures. [1] [2] [3]

Rural and remote families may face travel, accommodation and retrieval constraints that shape place-of-care options and must be named explicitly. [1] [2] [3]

Evidence, Guidelines & Regional Differences

[1] [2] [3] [4]

The RCPCH framework remains a high-yield structure for classifying when treatment limitation may be appropriate, while ANZICS and local health-service guidance shape operational practice in Australia and New Zealand. North American institutions rely on ethics committees and professional society statements with similar best-interests logic. [1] [2] [3] [4] [5]

Evidence for communication interventions and early palliative partnership supports fewer conflicts and better family outcomes than late, crisis-only conversations. [1] [2] [3] [4]

Exam Pearls

• Death determination first; donation second. [1] [2]
• Withdrawal decisions are independent of donation potential. [1] [2]
• Separate the conversations in time when possible. [1] [2]
• Early referral reduces missed opportunities. [1] [2]
• Decline still deserves excellent bereavement care. [1] [2]

[1] [2] [3] [1] [2] [3] [1] [2] [3]

References

1. [1]Moynihan KM et al. Epidemiology of childhood death in Australian and New Zealand intensive care units. Intensive Care Med, 2019.PMID 31270578
2. [2]Dopson S et al. Exploring nurses' knowledge, attitudes and feelings towards organ and tissue donation after circulatory death within the paediatric intensive care setting in the United Kingdom: A qualitative content analysis study. Intensive Crit Care Nurs, 2019.PMID 31350064
3. [3]Lee LA et al. Organ Donation in Canadian PICUs: A Cross-Sectional Survey, 2021-2022. Pediatr Crit Care Med, 2024.PMID 37966310
4. [4]Kramer AH et al. Missed Organ Donation Opportunities in Patients With Devastating Brain Injury: A Prospective Population-Based Cohort Study. Crit Care Med, 2026.PMID 41269058
5. [5]Jarrah RJ et al. Developing a standard method for apnea testing in the determination of brain death for patients on venoarterial extracorporeal membrane oxygenation: a pediatric case series. Pediatr Crit Care Med, 2014.PMID 24201855
6. [6]Weiss MJ et al. The Bucharest international European Society for Organ Transplantation consensus on paediatric controlled donation after circulatory determination of death. Transpl Int, 2026.PMID 42453307
7. [7]Murphy NB et al. Advancing the Scientific Basis for Determining Death in Controlled Organ Donation After Circulatory Determination of Death. Transplantation, 2024.PMID 38637919
8. [8]Himelstein BP et al. Pediatric palliative care. N Engl J Med, 2004.PMID 15103002