QUICK-REFERENCE BOX — Shifting the Goal to Comfort
- Withholding and withdrawing life-sustaining treatment are ethically and legally equivalent — a treatment can be stopped as well as not started.
- The decision rests on the infant's best interests: benefit vs burden of continued intensive care.
- The principle of double effect permits symptom relief (e.g., opioids for pain/dyspnea) even if it may hasten death, when the intent is comfort.
- Withdrawal of intensive care is a transition to active comfort care — anticipate and treat pain, secretions, and dyspnea.
- Support the family: communication, memory-making, spiritual/psychosocial care, and bereavement follow-up.
1. Overview
The Core Idea
When the burdens of intensive treatment outweigh its benefits, it can be ethically appropriate to withhold or withdraw life-sustaining interventions and shift the goal of care to comfort. This is not "doing nothing" — it is a deliberate, active plan focused on the infant's comfort and the family's needs.
2. Withholding and Withdrawing Are Equivalent
A Key Principle
Ethically and legally, not starting a treatment and stopping one are considered equivalent, even though stopping often feels harder emotionally. This matters because it means a time-limited trial of intensive care can be started and later withdrawn if it is not achieving its goals — a clinician should never avoid starting therapy purely out of fear of being unable to stop it.
3. The Principle of Double Effect
Comfort Is the Intent
Providing adequate symptom relief — for example, opioids for pain or dyspnea at end of life — is ethically justified even if it might, as a foreseen but unintended side effect, hasten death. The intent is to relieve suffering, not to cause death, and doses are titrated to symptoms. This is fundamentally different from actions intended to end life.
4. Artificial Nutrition & Hydration
A Complex, Values-Sensitive Decision
Medically assisted nutrition and hydration are considered medical interventions that can, in specific circumstances and with careful discussion, be ethically limited like other treatments. This is emotionally and culturally weighty and should be approached with particular sensitivity, clear communication, and involvement of the family and, where helpful, ethics support.
5. Neonatal Palliative Care
Active Comfort Care
- Anticipate and treat pain, dyspnea, and secretions proactively.
- Perinatal palliative care can begin antenatally for a life-limiting diagnosis.
- Create an environment for the family to be together and to hold their baby.
- Coordinate with a palliative-care team where available.
Who, and with whom (Baylor Ed. 33)
- The AAP supports an integrated model: palliative care starts at diagnosis, runs alongside conventional treatment through the illness, and continues through and after death. Its principles are dignity for patient and family, access to competent and compassionate care, support for caregivers, professional and social support for families, and improvement through research and education.
- The National Consensus Project guidelines (2018 update, AAP-endorsed) set out 8 domains: structure and processes; physical; psychological and psychiatric; social; spiritual, religious and existential; cultural; care of the imminently dying patient; and ethical and legal aspects.
- Newborns likely to benefit: those at the threshold of viability (<24 weeks or <500 g); complex or multiple congenital anomalies; infants not responding to intensive care (slow deterioration or an acute life-threatening event) or with a terminal or irreversible condition; and severe complex chronic illness that may become life-threatening.
- Team: physician, nurse or nurse practitioner, social worker, spiritual advisor and child life therapist, often with a family advocate, pharmacist, dietitian, bioethicist and psychiatrist or psychologist. The primary team coordinates them.
Symptom control at the end of life (Baylor Ed. 33)
- Assess before treating: in chronically or critically ill infants, vital signs and grimacing may be unreliable or absent — use a validated neonatal pain tool. Withdrawal scores (NAS/WAT) are not pain tools. Look also for agitation, dyspnoea, neuro-irritability and secretions.
- Appropriately dosed medication does not hasten or cause death. Give it scheduled or as an infusion with rescue boluses to avoid troughs, and give a bolus before starting or increasing an infusion. Opioids have no maximum dose — titrate to effect. A habituated infant on an infusion can receive the hourly infusion dose as a bolus.
- Route: IV first; intranasal when there is no IV access (fentanyl and midazolam work well); oral if neither is possible, though relief is slower; IM or SC only as a last resort.
- Choosing an opioid: consider organ function. Morphine causes less tolerance than fentanyl and has the most data for air hunger, but releases histamine (hypotension, flushing, itch). Other opioids work as well, especially if the infant is already on one when life-sustaining treatment is withdrawn. Benzodiazepines relieve anxiety and sedate but give no analgesia.
- Adjuncts: acetaminophen 10–15 mg/kg PO or PR every 4–6 h for mild discomfort (check weight- and age-based formulary dosing). Sucrose 24% during nutritive or non-nutritive comfort: 1–2 mL PO every 6 h at term, 0.1–0.4 mL every 6 h if preterm.
End-of-life medications (Baylor Table 15-1)
| Drug | Route and dose | Points to know |
|---|
| Morphine | IV/IM/SC 0.05–0.1 mg/kg every 4–8 h; infusion 0.01–0.03 mg/kg/h; PO = double the IV dose | Histamine release; less tolerance than fentanyl; longer half-life than fentanyl or hydromorphone |
| Fentanyl | IV 1–2 mcg/kg every 2–4 h; infusion starting 1–2 mcg/kg/h, no maximum. Intranasal 1–2 mcg/kg every 10 min — up to 3 doses in 30 minutes for laboured breathing or distress on a comfort plan | Short half-life may under-treat pain; infants on a fentanyl infusion should get a morphine bolus immediately before support is withdrawn |
| Hydromorphone | IV/IM 0.01–0.015 mg/kg every 3–6 h; infusion starting 5–20 mcg/kg/h, no maximum | Better than morphine in renal dysfunction, but still monitor closely |
| Lorazepam | IV 0.05–0.1 mg/kg every 4–6 h | Anxiolytic and sedative; no analgesia |
| Midazolam | IV 0.05–0.1 mg/kg every 2–4 h; infusion 0.06 mg/kg/h; intranasal 0.2–0.3 mg/kg every 2–3 h, half in each nostril | Shorter-acting than lorazepam; no analgesia |
| Phenobarbital (habituated infants) | IV/PO 2.5 mg/kg every 12 h | For opioid- or benzodiazepine-resistant agitation |
| Dexmedetomidine (habituated infants) | IV 0.1–0.3 mcg/kg/h, up to 2.5 mcg/kg/h | Hypotension; minimal respiratory depression |
| Propofol | Anaesthesia/pain service | Rarely needed as an anaesthetic agent |
| Glycopyrrolate (secretions) | PO 40–100 mcg/kg or IV 4–10 mcg/kg, every 4–8 h | — |
On double effect: the ethical principle above justifies symptom relief even if death might be hastened. Baylor adds the clinical observation that correctly titrated doses do not in fact hasten death — so fear of that outcome should never lead to under-treatment. Verify every dose against your formulary.
6. Family Support
Caring for the Whole Family
- Clear, compassionate communication and involvement in decisions.
- Memory-making (photographs, hand/footprints, keepsakes).
- Spiritual and psychosocial support tailored to the family's culture and beliefs.
- Bereavement follow-up after the death.
6+. End-of-Life Care in Practice (Baylor Ed. 33)
Talking with parents
- SOBPIE structures the conversation:
- Situation — what must be conveyed and decided.
- Opinions and options — which alternatives are medically and ethically supportable, and how your own biases colour them.
- Basic human interactions — a quiet private room, only essential staff, phones away, use the baby's name, introduce everyone, tolerate silence.
- Parents — draw out their understanding, questions and needs.
- Information — tailored to them; many families want a recommendation, so give one when the situation supports it.
- Emotions — recognize how much they shape decisions.
- When faith is central, use AMEN: Affirm the belief ("I am hopeful too"); Meet them where they are ("I join you in hoping for a miracle"); Educate from your medical role; No matter what, commit to staying with them. A cultural broker from the family's community can help.
- Always use a hospital medical interpreter for end-of-life discussions. Ask open questions ("What are your beliefs and how can we meet your spiritual needs?") rather than "Do you want a chaplain?" Families of lower income may suspect that stopping treatment is about cost — say explicitly that ability to pay does not decide goals of care.
- Delivery room: no US federal or Texas law requires resuscitation in every case. NRP holds that withholding or withdrawing resuscitation is ethically and legally acceptable when parents and clinicians agree that it would only prolong dying or offer insufficient benefit. Because gestation and weight estimates are uncertain, examine the baby at birth before committing. A trial of intensive care that can be stopped later is an option. If no consensus can be reached in time, follow hospital resuscitation policy.
- No escalation of care — continuing current support without adding more, to allow memory-making — can bridge parents who cannot yet agree to withdrawal.
Preparing for and carrying out withdrawal
- Before: document the conversation and why the infant qualifies, enter the code-status order, and hold a staff huddle with everyone who will take part (attending, APP or fellow, bedside nurse, respiratory therapist, and as needed pharmacist, chaplain, child life, music therapy, social work, interpreter). Tell parents the sequence in advance — including that not every baby dies soon after extubation. Withdrawal can happen within a day or be planned over weeks for visits, rites and memory-making. Give 24 hours' notice if extra nursing or RT staffing is needed.
- Environment: a private room, relaxed visiting, alarms off and pagers silenced, one nurse and one provider available throughout (ideally the infant's own). Child life can prepare siblings; call the chaplain at the start of the dying process whatever the family's faith. If no family is present, a staff member holds the baby. A time-limited ventilator (about 1 hour) can allow rites or relatives to gather. Monitors and pulse oximetry are not used during the final withdrawal.
- Comfort measures: swaddle and hold; stop painful interventions and remove monitoring; keep IV access only for comfort medication. With a comfort-focused birth plan, IM vitamin K and eye prophylaxis may be unnecessary. Feeding and a pacifier may comfort, though the AAP permits forgoing feeds when death is imminent. Suction only if needed.
- Air hunger vs agonal breathing: increased work of breathing, flaring, grunting and retractions mean air hunger — treat promptly, often with morphine. Agonal breaths — sporadic reflex breaths in an unconscious infant with long apnoeas — cause no distress and need no treatment. Explain the difference to the family beforehand.
- Medication principles:
- Opioids and benzodiazepines are often both needed — opioids alone may not relieve air hunger.
- Palliative dosing may differ from standard protocols, and difficult or tolerant infants merit pain or palliative consultation.
- Pre-medicate before compassionate extubation, and stop non-comfort medicines unless the family asks otherwise.
- Stop paralytics well before withdrawal — they hide distress — and check for residual blockade.
- If the infant is on a fentanyl infusion, add morphine boluses at withdrawal or with distress (doses in section 5).
- The ventilator: move from HFOV to conventional ventilation so parents can hold the baby. Wean over a short period while confirming comfort, and increase sedation before removing the tube if the infant seems uncomfortable. No blood gases or chest films are needed during the wean.
After death
- Memory-making: hair, prints or molds, measurements, ID bands, cap and blanket, photographs (multiples photographed together, living or deceased). Encourage bathing and dressing the baby. A staff member walks the family out. Do not clean the bed space until they have left.
- Brain death: there are no accepted criteria below 37 weeks' gestation, so it is rarely declared in the NICU. Where it is, examinations by at least two different services are required (neurology plus critical care advisable).
- Pronouncement and notification: the physician of record documents the time of death without disrupting the family's time. Notify the mother's obstetrician, the paediatrician and referring doctors.
- Organ and tissue donation (US): notify the organ procurement organization within 1 hour of an imminent-death trigger (such as a DNR order in a ventilated patient or a transition-of-care meeting) or of cardiac death. Baylor reports all cardiac deaths at ≥19 weeks' gestation, and documents the call.
- Jurisdiction-specific rules (Texas examples): the medical examiner must be notified of every death under 6 years; if the body is not released, autopsy is mandatory without parental consent. An unpreserved body cannot be held more than 24 hours, so the infant goes to the morgue within that time, however long a family wishes to stay.
- Autopsy: discuss it soon after death; written or witnessed telephone consent is acceptable. It changes the diagnosis or adds findings in about 30–50% and informs recurrence risk or sibling testing in 6–10%. It is not disfiguring and allows an open casket; it takes 3–4 hours and the body is available the same day. Limited autopsy (pathology asks to include the chest), genetic testing alone, or imaging autopsy are alternatives. Verbal results come in about 72 hours, preliminary in 7–10 days, final in 6–8 weeks.
- Follow-up: name the follow-up attending (usually the regular daytime attending, who also signs the death certificate) on the death summary. Social work calls every family at 1 month and offers a physician meeting; the autopsy review usually follows at 2–3 months, and the two can be combined.
- Hospice: no time limit on referral; care at home or in a facility. Complete an outpatient DNAR if the family agrees, fill prescriptions before discharge, and tell families to call the hospice, not emergency services, at home death. Perinatal hospice supports families continuing a pregnancy after a lethal fetal diagnosis, with a birth plan and shared decisions about after-birth care.
Grief — for families and for staff
- There is no "right" way to grieve. Kübler-Ross's stages (denial, anger, bargaining, depression, acceptance) are not linear. Davidson's phases describe shock and numbness for about 2 weeks, searching and yearning to 4 months, disorientation at 5–9 months, and reorganization at 18–24 months. Up to a quarter of bereaved parents still have severe symptoms years later. A continuing bond with the baby is central to adjustment.
- Neonatal loss is especially hard: few memories, guilt, weak support, surviving multiples to care for, parents grieving differently from each other, and relief mixed with sorrow after a long illness. Mental illness, poverty and substance use raise the risk of complicated grief — refer atypical grief for psychiatric care.
- Staff carry these losses too. Unprocessed grief feeds burnout and compassion fatigue — use debriefings, palliative-care support sessions and employee wellbeing programmes.
7. Key Pearls
High-Value Points
- Withholding and withdrawing are ethically equivalent — enabling time-limited trials.
- Double effect justifies symptom-directed opioids even if death may be hastened.
- Withdrawal of intensive care is a shift to active comfort care.
- Artificial nutrition/hydration are medical interventions that can be limited in specific cases.
- Comprehensive family support and bereavement care are part of the plan.
8. Common Mistakes to Avoid
Misreadings & Better Practice
Frequent errors at end of life.
| Mistake | Why it's wrong | Better practice |
|---|
| Refusing to start therapy for fear of not being able to stop it. | Withholding = withdrawing. | Offer time-limited trials. |
| Under-treating pain at end of life. | Causes suffering; misapplies double effect. | Titrate symptom relief to comfort. |
| Treating withdrawal as "doing nothing." | It's active comfort care. | Plan proactive symptom management. |
9. High-Yield Summary
Key Takeaways
- Withholding and withdrawing life-sustaining treatment are ethically/legally equivalent.
- Decisions rest on best interests (benefit vs burden).
- Double effect permits symptom relief that may foreseeably hasten death when intent is comfort.
- Withdrawal is a transition to active comfort care; treat pain, dyspnea, secretions.
- Support families with communication, memory-making, and bereavement care.
10. References
- 1.American Academy of Pediatrics, Section on Hospice and Palliative Medicine. Pediatric palliative care and hospice care commitments, guidelines, and recommendations.
- 2.Bell EF; AAP Committee on Fetus and Newborn. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics.
- 3.Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol.
Back to Clinical Guideline Hubs