16.4 Terminal Conditions, Palliative Care, and End of Life
Key Takeaways
- Redirecting goals from disease-modifying technology to comfort is a legitimate intensive-care plan when burden outweighs benefit, not a failure of the nurse or the family.
- Comfort medicines include opioids for pain and air hunger, benzodiazepines for seizures or agitation, and anticholinergics for distressing secretions; indicated opioid is not withheld to avoid a theoretical hastening of death.
- Memory-making (photographs, prints, rites) and family presence during dying and during withdrawal of support are nursing interventions, not optional extras.
- Withholding a new therapy and withdrawing a current therapy are ethically comparable; families still need preparation for gasping, color change, and variable time to death.
- Neonatal organ donation is uncommon; when it is considered, involve the organ-procurement organization without pressure, and debrief staff moral distress rather than leaving it unnamed.
16.4 Terminal Conditions, Palliative Care, and End of Life
Quick Answer: When cure is not possible or the burden of intensive therapies outweighs benefit, redirect goals toward comfort with the family. Use opioids and other comfort medicines for pain, dyspnea, and secretions. Offer memory-making and family presence during dying and during withdrawal of support. Organ donation is uncommon in neonates. Attend to staff moral distress without turning this chapter into the full Professional Caring blueprint.
Terminal conditions sit in Multisystem because dying in the NICU is usually the end of a cascade: extreme prematurity, lethal malformation, devastating brain injury, or ECMO that has run out of reversible lung. Palliative care is not the opposite of intensive care. It is intensive care with a different primary aim.
Redirecting goals is a clinical plan
Goals of care name what the therapies are for. Early on, the goal may be survival with all indicated technology. When imaging, serial exams, and time show that survival would require ongoing painful technology without a meaningful chance of awareness or of leaving the hospital, the honest next conversation is whether the goal should shift to comfort, to a time-limited trial, or to a dual aim (treat reversible problems while refusing a second ECMO run). This is redirecting goals, not giving up.
The neonate cannot consent. Parents (or legally authorized caregivers) decide using the infant's best interests, their values, and the medical facts you actually know. Use an interpreter for language discordance. Sit down. Lead with the infant's name. Ask what the family already understands. Name uncertainty where it exists (a large IVH is not a crystal ball; anencephaly is). Avoid dumping a menu of every possible cannula as if more options were always more ethical. Ethics consults help when the team is split or when caregivers request therapies the team believes only prolong dying. Culture, faith, and previous loss shape the pace of these talks; responding to diversity is a Professional Caring competency taught in Chapters 17–18. Here, take only this operational piece: do not assume that they want everything or they want nothing from an ethnic label.
Prenatal palliative planning for trisomy 13, trisomy 18, bilateral renal agenesis, or a giant encephalocele is the same skill started earlier. Continuity between the antenatal conference and the delivery-room plan prevents a chaotic full-code that nobody intended.
Comfort medicines
Comfort is not a slogan. It is pharmacology plus nursing.
- Opioids (morphine or fentanyl) for pain and air hunger. Dose to the infant's face, heart rate, and work of breathing, not to a fear that you will hasten death by treating gasping. When the goal is comfort, respiratory depression is not a reason to withhold indicated opioid.
- Benzodiazepines for seizures or severe agitation that opioid does not touch.
- Anticholinergics (atropine, glycopyrrolate) when pooled secretions are noisy and distressing to the family; suctioning every 10 minutes can be more cruel than a drying agent.
- Nonpharmacologic measures: skin-to-skin if the infant can be held, a quiet room, heat, sucrose for brief procedures you still must do, discontinuation of neuromuscular blockade so the face can be seen, discontinuation of labs that will not change comfort
- Stop what no longer serves: routine blood gases, hourly stimulation to assess readiness, phototherapy for a dying infant with a bilirubin that will not matter, and alarms that only terrify
Document the indication (comfort), the response, and that the family was prepared for slower breathing. Naloxone has no role as a safety drug at the end of life.
| Symptom | Typical comfort approach | Avoid |
|---|---|---|
| Pain or air hunger | Titrate opioid to expression and work of breathing | Withholding opioid to protect a respiratory rate |
| Seizure or severe agitation | Benzodiazepine once reversible causes are not the plan | Neuromuscular blockade that masks distress |
| Noisy secretions | Anticholinergic; gentle positioning | Continuous deep suction as the only plan |
| Parental fear of the unknown | Prepare for color change and agonal breaths | Isolating parents in a waiting room |
Memory-making
Families remember whether anyone treated their infant as a person. Offer, do not force:
- Photographs and video, including with siblings if the family wishes
- Footprints, handprints, hair locks, molds
- Baptism, blessing, or other rites on the family's timeline
- Clothing, a blanket, a cot that allows holding for hours
- Naming, if that had been deferred
- Cooling blankets or cuddle cots after death so holding is not rushed by appearance change
Memory-making is compatible with an ongoing intensive plan. Do not wait until the heart has stopped to ask about a photograph.
Withdrawal of support
Withholding a new therapy and withdrawing a current therapy are ethically equivalent in standard intensive-care ethics; they do not feel equivalent at the bedside, so name that. When the decision is to remove an endotracheal tube or to stop VA ECMO, prepare the room: extra chairs, tissues, chaplain if wanted, pager silence, a nurse whose only job is the family, a nurse whose job is the infant and the medicines. Tell the family they may hold before, during, and after extubation. Describe color change, agonal breaths, and that time to death varies from minutes to hours. Stop neuromuscular blockers well in advance so you are not masking distress. Have opioid drawn. After death, offer as much time as the unit can safely give. Know your coroner and autopsy rules; some deaths require medical-examiner notification (unexpected death, possible trauma). Offer autopsy as information for the next pregnancy, not as a demand.
A code that the family watches is not the same as a planned withdrawal; if a full resuscitation is still the plan, family presence during CPR is supported in many pediatric settings when a staff member can narrate. That is still family-centered care, not a spectacle.
Organ donation is rare—and still must be handled cleanly
Neonatal organ donation is uncommon because of size, vessel caliber, and the small number of recipients. Tissue donation (heart valves, corneas in some programs) is more often feasible than solid organs. Donation after circulatory death is offered in selected centers for a few neonates who meet local criteria. Anencephaly was historically discussed as a potential donor situation and remains ethically fraught. If donation is possible, notify the organ-procurement organization according to hospital policy—ideally before you frame the entire conversation as nothing more we can do—and never condition palliative care on a yes. Pressure from the team, or the opposite reflex of never mentioning donation, both fail families who would have wanted to donate. The exam-level fact is rarely, not never, and never coercive.
Staff moral distress and family presence
Moral distress is knowing an ethically better action and being blocked from it—continuing ECMO that only delays dying, or being asked to stop before you believe the reversible path was tried. It is not the same as burnout, though they stack. This chapter does not replace Advocacy/Moral Agency or Caring Practices in Chapters 17 and 18. It does require you to: speak in the huddle, request a pause or ethics consult, debrief after a death, and use chaplain and peer support. Charge nurses should not assign the same nurse three sequential withdrawals without a break. Silence is how distress becomes cynicism.
Family presence means parents are not visitors. They should be offered presence at the cooler, at the ECMO pump, at extubation, and at death, with coaching so they are not injured by surprise. Siblings need a developmentally honest explanation from someone who can do that work. Staff still protect sterile fields and traffic in a crash, but the default after a terminal decision is an open door.
Worked scenario
A term infant with severe CDH has been on VA ECMO 12 days. Head ultrasound now shows a large ipsilateral hemorrhage. The surgeon does not believe repair will change the neurologic outcome. You help set a family meeting: neonatology, surgery, the ECMO attending, the bedside nurse who has been there at night, an interpreter if needed. The team recommends stopping ECMO and extubating to comfort. The parents ask for two hours of holding on the circuit, photographs, and a blessing, then removal. You draw morphine, silence nonessential alarms, invite grandparents, and stay. After death you offer time, a memory box, and a later phone call. You do not start an organ-donation lecture while they are still holding unless they ask or policy requires a designated requester. After shift you go to the debrief rather than swallowing the case.
Exam traps
- Equating palliative care with doing nothing
- Withholding opioids so as not to hasten
- Banning parents from the room at extubation
- Treating neonatal organ donation as routine
- Ignoring nurse distress as unprofessional feeling
Independent practice for the whole Neonatal CCRN outline, including this continuum-of-care cluster, is at /practice/ccrn-neonatal.
Parents of a neonate with devastating brain injury ask whether shifting from ECMO and reintubation to comfort means the team is giving up. What is the best framing?
The team and family have decided to stop VA ECMO and extubate a dying neonate. Which nursing action best matches family-centered end-of-life care?
Which statement about neonatal organ donation and staff distress is most accurate?