WLST and the DCD pathway

1. Three patient vignettes#

Vignette A. Aliyah, 13 years, severe TBI not progressing to brain death#

Aliyah, 13 years, 48 kg, severe TBI from a motor vehicle accident, day 5. Pentobarbital infusion discontinued 36 h ago for washout. Brain-death exam attempted today: no spontaneous respirations, no cough, no gag, no pupillary or corneal response. However, the apnoea test was inconclusive (PaCO2 rose to 52 with one faint chest wall movement at the 5-minute mark, then no further effort; the test was repeated 4 h later with the same equivocal result). Ancillary TCD shows oscillating flow bilaterally. cEEG shows electrocerebral inactivity. MRI: extensive cortical and brainstem injury. The team's view is that the prognosis is catastrophic but formal brain-death criteria cannot be confidently declared. The family is being introduced to the consideration of WLST and the option of DCD. 1 2

Vignette B. Rohan, 3 months, severe HIE post-near-drowning#

Rohan, 3 months, 6 kg, near-drowning in a domestic bathtub 7 days ago. Cooled to 33 C for 72 h. Day 7 MRI: extensive cortical and basal ganglia injury with restricted diffusion in the thalami. cEEG: discontinuous to burst-suppression background that never reached continuous. Brain-death criteria are not met (some spontaneous breathing in apnoea test, pupillary reactivity preserved on the right). The family is being supported in their consideration of redirecting goals of care to comfort. DCD is offered as one option. Question: how does the conversation differ in an infant where brain-death is not met but prognosis is catastrophic; what role does the MNM evidence play; how does the DCD pathway work in this age? 3 4

Vignette C. Tariq, 9 years, oncology-related catastrophic decompensation#

Tariq, 9 years, 26 kg, refractory leukaemia, day 14 of induction chemotherapy, severe pulmonary haemorrhage and ARDS with refractory hypoxaemia and multi-organ failure. Acute on chronic encephalopathy from CNS leukaemia and methotrexate toxicity. The oncology team's view is that meaningful disease control is unlikely; PICU support is sustaining the child but not progressing toward recovery. The family is considering redirecting to comfort. DCD is not feasible because of the leukaemia and infection. Question: how is the WLST conversation different when DCD is not on the table; what role does MNM evidence play in supporting the family's decision; how is the dying process managed? 3

2. The clinical question#

For each of these children: how do we support the family through the WLST decision, what MNM evidence is presented to support the recommendation, and (where applicable) how is the DCD pathway introduced without coercion?

3. Background#

Withdrawal of life-sustaining therapy in a severely brain-injured child is one of the most ethically and emotionally complex decisions in paediatric critical care. The decision is the family's, supported by the medical team's evidence and recommendations. The Meert 2015 paediatric palliative care framework anchors the conversation structure; the AHA 2021 pediatric post-arrest guideline anchors the prognostic timing; the Greer 2020 World Brain Death Project and Nakagawa 2011 paediatric brain-death guidelines anchor the boundary between brain-death disclosure and WLST conversations.

Three pathways at the end of life in paediatric critical care:

1. Brain death (DBD pathway). Brain-death criteria are met by clinical exam (and ancillary tests where required). The patient is declared dead; continued ventilation is for the family's processing time or for organ retrieval, not for the child. Organ donation is an option, structured as donation after brain death (DBD).
2. WLST without donation. Brain-death criteria are not met, but the family decides to redirect goals of care to comfort. Life-sustaining therapy is withdrawn; the child dies in time (typically minutes to hours) in a controlled, palliative manner. Death is by cessation of circulation. Organ donation is not pursued.
3. WLST with DCD. Same as above, but the family additionally consents to organ donation after circulatory death. The dying process is the same; following circulatory arrest and a defined hands-off period (typically 2 to 5 minutes), retrieval begins.

Why the firewall matters. The WLST decision is supported by evidence about the child's prognosis and the family's values; the DCD option introduces the possibility of benefit to other patients. To ensure the WLST decision is not influenced by organ availability, the conversations are separated: WLST first, by the clinical team caring for the child; DCD afterward, by a separate organ retrieval coordinator team. This firewall is foundational to the ethics of paediatric DCD. 3

Pediatric DCD specifics. The Maastricht categories define DCD subtypes; Maastricht III (controlled DCD after WLST) is the most common in paediatric practice. The hands-off period (the interval between cessation of circulation and the start of retrieval) varies by jurisdiction (typically 2 to 5 minutes) and exists to ensure that auto-resuscitation does not occur. Pre-mortem heparinisation is permitted in some jurisdictions and not others; the retrieval team and intensivist follow local protocol. Age-banded DCD outcomes are improving with experience; current paediatric DCD donors include kidneys, livers, and (in selected centres) lungs and hearts. 5

The MNM evidence base. The cEEG continuity trajectory, MRI extent and pattern, NPi trend, clinical exam, and (where used) TCD or SSEP findings together form the evidence base for the prognostic conversation. No single modality is sufficient; concordant evidence across modalities is the standard. The 2021 AHA paediatric guideline and the 2024 paediatric MMM update both emphasise integration. 4 6

4. The multimodal picture#

5. Decision tree#

flowchart TD
  Cat[Catastrophic injury, family considering WLST] --> BDcheck{Brain-death criteria met?}
  BDcheck -->|Yes| DBD[DBD pathway, brain-death disclosure]
  BDcheck -->|No| WLSTtalk[Pace WLST conversation, multiple meetings]
  WLSTtalk --> Family{Family decides WLST?}
  Family -->|Yes| DCDoffer{DCD candidate?}
  Family -->|No| Continue[Continue current care]
  DCDoffer -->|Yes| SepTeam[Separate team introduces DCD]
  DCDoffer -->|No| WLSTplan[WLST with comfort care plan]
  SepTeam --> FamilyDCD{Family consents to DCD?}
  FamilyDCD -->|Yes| DCDpath[DCD protocol, hands-off period, retrieval]
  FamilyDCD -->|No| WLSTplan
  WLSTplan --> Palliative[Palliative withdrawal, comfort measures]
  DCDpath --> Postmortem[Family-supported bereavement]
  Palliative --> Postmortem

6. Step-by-step bedside actions#

For Aliyah (13 y, 48 kg, severe TBI with equivocal brain-death exam). Days are from the initial injury.

1. Day 5, morning: brain-death exam attempted. Per Nakagawa 2011 paediatric brain-death guidelines, two examinations separated by an age-banded observation period are required for a brain-death determination in children (12 hours for children over 1 year per the 2011 paediatric guidelines, 24 hours in neonates; with required ancillary tests if certain exam components cannot be completed). The exam today is incomplete (apnoea test equivocal). Brain-death determination is not made. 2 1
2. Day 5, afternoon: team meeting. Intensivist, neurology, neurosurgery, palliative care, bedside nurse, organ donation coordinator (briefed but not part of the WLST conversation). Agreement on the prognostic message and the recommendation. The recommendation is not "withdraw care" but "consider redirecting goals of care toward comfort, given the catastrophic and irreversible nature of the injury".
3. Day 5, evening: first family meeting. SPIKES-structured. Introduce the evidence (the clinical exam, the MRI image, the cEEG record, the NPi trend). Explain that brain-death criteria cannot be confidently declared but that the prognosis is catastrophic. Pause. Ask what they understand and what they want to know. Pre-schedule the next meeting for the next day.
4. Day 6: bedside support, repeat exam. Repeat clinical exam (often unchanged); NPi trend; cEEG remains electrocerebral inactivity. Family time at the bedside.
5. Day 6, evening: second family meeting. Continue the conversation. The family may begin to ask about what comes next ("if we decide not to continue, what would that look like?"). Describe the WLST process honestly: extubation in a private room, comfort measures (opioid plus benzodiazepine titrated to comfort, often a continuous infusion), family presence supported, time to death typically minutes to hours.
6. Day 7: third family meeting if needed. The family has had time to absorb the evidence and to discuss among themselves. They may be ready to express a decision. If decided WLST, the clinical team confirms the plan and the timeline.
7. DCD discussion (separate team). Once WLST is decided, the organ retrieval coordinator (not the clinical team) introduces DCD as one option. The coordinator explains the protocol, the hands-off period, what the family can be present for, what happens to the child during retrieval. The family decides. Documentation: consent (or refusal) is recorded.
8. DCD protocol activated (if consented). The WLST happens in an operating theatre or a designated DCD room. The clinical team (intensivist, nurse) cares for the child during dying; the retrieval team is in the next room or waiting area. Comfort medications are titrated to the child's needs. The retrieval team does not enter the room until after declaration of death and the hands-off period.
9. After circulatory cessation: hands-off period. Typically 2 to 5 minutes (jurisdiction-dependent). After this period, death is declared by the clinical team (not the retrieval team) and retrieval begins. The family is supported in a separate room.
10. Post-retrieval: bereavement care. The family is supported with structured bereavement; follow-up at 6 weeks, 3 months, 12 months. Anniversary acknowledgements where appropriate.

7. Management endpoints#

Success looks like: the family has had adequate time and information to make a coherent decision; the team's recommendation has been honestly presented; the family's choice (whichever it is) has been supported; the dying process has been peaceful, with family presence supported; the family has received bereavement follow-up.

Failure looks like: the family feels coerced by the team; the conversation was rushed; the MNM evidence was withheld or sugar-coated; the team disagreed in front of the family; the dying process was not palliative; the family has not received follow-up.

When to escalate (for the family, not against them):

• Disagreement within the family that cannot be resolved through team-supported conversation, hospital ethics committee.
• Disagreement between family and team about the recommendation, second opinion (another senior intensivist, neurology, palliative care).
• Refusal to engage with the prognosis evidence, continue current care; revisit in days.

8. Variant subsections#

8.1 The brain-death versus WLST boundary#

When brain-death criteria are met, the conversation is brain-death disclosure (the child has died); organ donation is structured as DBD if pursued; ventilation continues post-mortem for the family's processing time or for retrieval. When brain-death criteria are not met but prognosis is catastrophic, the conversation is WLST consideration; the child is dying but not yet dead; the family decides whether to redirect care. The two conversations are distinct in content and ethical structure, even when they appear superficially similar. 1 2

8.2 The Maastricht III DCD pathway in paediatric practice#

Controlled DCD after WLST is the most common paediatric DCD subtype. The protocol: WLST in a designated location, comfort medication titrated to the child's needs, family presence supported, monitoring of cardiac output and arterial pressure until cessation, hands-off period after asystole, death declaration, retrieval. Organs retrievable include kidneys (commonly), liver, lungs and heart (in selected paediatric centres with experience). Outcomes for paediatric DCD recipients have improved with retrieval team experience. 5

8.3 The retrieval team firewall#

The retrieval team is structurally separated from the clinical team caring for the dying child. This separation is essential to the ethics of DCD: the WLST decision is made on its own terms; the DCD option is introduced afterward by a team with no role in the WLST decision; the retrieval team does not enter the room before death is declared and the hands-off period is complete. The clinical team's job is to support the child and the family; the retrieval team's job is to retrieve organs only after the clinical team's job is done.

8.4 Pediatric DCD in the under-1-year age group#

DCD in infants (including neonatal DCD) is a more recent development, with specific challenges: smaller organs, more delicate retrieval, longer hands-off periods sometimes needed because of more uncertain circulatory cessation timing. Some centres now offer paediatric DCD across all paediatric age groups; others limit to children over a certain age. Local protocols vary; the principles (firewall, family consent, comfort care) are constant. 3

8.5 WLST when DCD is not feasible#

In some children, DCD is not feasible (active uncontrolled infection, malignancy, contraindications to organ donation). The WLST conversation is the same in structure: family-centred, multimodal-evidence-supported, paced across multiple meetings. The dying process is palliative; the location may be the PICU bedside, a designated comfort room, or (where families choose and circumstances allow) at home with hospice support.

8.6 The role of MNM in supporting WLST conversations#

Multimodal evidence (cEEG, MRI, NPi trajectory, clinical exam) provides the basis for the prognostic message. Concordant evidence across modalities is more powerful than any single test. Discordant evidence is itself information and is honestly presented; sometimes discordance changes the recommendation (a child with preserved NPi and partial cEEG continuity may not be a WLST candidate even when MRI is severe). The 2025 paediatric MMM consensus emphasises this integration. 7 6

9. Multimodal integration matrix#

10. Worked alternative scenarios#

10.1 What if the family declines WLST?#

The family's decision is respected. The team continues to provide care, support the family, and revisits the conversation in days. Time often does the work that single conversations cannot. Ethics consultation may be helpful when prolonged disagreement persists.

10.2 What if the family wants DCD but the patient is not a candidate?#

The clinical team explains why DCD is not feasible (active infection, contraindicated organs, retrieval team unavailable). The conversation may then focus on what the family hoped to achieve through donation (often a sense of meaning or contribution) and on what other forms of legacy may be possible (research donation in some centres, advocacy work, named memorial activities). The family's wishes are respected and supported.

10.3 What if the patient's circulation does not cease in the expected time after WLST?#

In a small proportion of paediatric WLST cases, the patient continues to have circulation for hours after extubation. The DCD protocol typically defines a time window (often 60 to 120 minutes) beyond which DCD is not pursued; the patient continues to receive comfort care and dies in time, with the family supported. The pre-WLST conversation must include this possibility, so the family is not surprised.

11. Outcome data#

• Meert 2015 paediatric palliative care in PICU: structured conversation, family-team consistency, and pacing across multiple meetings are associated with reduced family distress and improved decision-making confidence. 3
• AHA 2021 pediatric post-arrest: definitive prognostication should not be attempted before 24 hours; multimodal evidence integration is recommended; 72 hours to 5 days is the most reliable prognostic window. 4
• Greer 2020 World Brain Death Project: standardised approach to brain-death determination including paediatric considerations; explicit cultural and religious accommodations. 1
• Nakagawa 2011 paediatric brain death (SCCM and AAP): dual examination requirement, observation periods by age, apnoea test specifics, ancillary testing role. 2
• ELSO neurological consensus (Lorusso 2017): addresses neurological assessment on ECMO, including end-of-life considerations and DCD on ECMO support. 5
• Pediatric MMM consensus (Figaji 2025; Helbok 2024): multimodal evidence integration for prognostic conversations. 7 6
• Naim 2023 PCCM: seizure burden after pediatric cardiac arrest correlates with 12-month neurological outcome; informs prognostic communication. 8

12. Pitfalls#

• Conflating brain death and WLST. Brain-death disclosure is informing the family that the child has died. WLST is a decision the family makes about the dying child. The conversations are structurally different.
• Failing to firewall WLST and DCD conversations. The DCD discussion should be led by a separate team after the WLST decision is made. The firewall is foundational to the ethics of paediatric DCD.
• Pacing too fast. The first conversation introduces the evidence; the second clarifies what is being asked; the third invites the family's perspective. Most families need at least three conversations.
• Pacing too slow. Prolonged uncertainty has its own harms; clear next-meeting timing helps.
• Disagreement within the team in front of the family. Resolve in pre-meeting; present a consistent recommendation.
• Withholding the MNM evidence. The cEEG, MRI, and NPi trend graphs are powerful; show them where appropriate and explain in plain language.
• Premature prognostication. Less than 24 hours after the injury is too early; 72 hours to 5 days is the reliable window for cooled post-arrest children.
• Forgetting bereavement follow-up. Structured 6-week, 3-month, 12-month follow-up is the standard of care.

13. Pediatric considerations#

14. Combine with#

• Integration: Brain-death MNM: the ancillary testing pathway.
• Integration: Family communication MNM: the conversation frameworks.
• Integration: HIE post-arrest: the prognostic timing.
• Integration: Refractory status epilepticus: the long-stay PICU patient where WLST may be considered.
• Pupillometry / NPi page: the brainstem trend.
• EEG / aEEG modality page: the cortical function evidence.

15. Evidence summary#

16. Recent literature (2022 to 2025)#

• Family-centred WLST and DCD studies continue to refine conversation structure and timing. The Meert 2015 framework remains the reference. 3
• AHA 2021 pediatric post-arrest guideline is the current reference for prognostic timing. 4
• Naim 2023 PCCM quantifies the relationship between cEEG-detected seizure burden and outcome, informing WLST conversations. 8
• Helbok 2024 paediatric MMM update emphasises multimodal evidence integration in prognostic conversations. 6
• Figaji 2025 paediatric MMM consensus integrates evidence communication into the broader consensus framework. 7
• Pediatric DCD expansion continues, with younger ages and more retrievable organ classes (lungs, hearts in experienced centres).
• Bereavement support models are increasingly standardised, with structured follow-up replacing ad-hoc contact.

17. Self-check#