Agonal Breathing at Home and a Mother Reaching for the Phone
Ana is 5 years old with a diffuse midline glioma, now in the last days of life at home under a pediatric concurrent hospice program. When the on-call clinician returns the call, her mother is holding the phone beside her. Ana is unresponsive, mottled to the knees, with irregular gasping respirations at 40/minute and loud gurgling upper-airway sounds. She has not swallowed in 24 hours. There is a fentanyl patch in place and a PRN morphine order. Her mother says: “She's gasping - turn the oxygen up and I'm calling 911.” Ana has a signed comfort-care/DNR order on the refrigerator, a central line still in place, and a hospice nurse who is 40 minutes away.
1. What is happening physiologically, and what will you do in the next fifteen minutes?
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Name it: this is the dying process, not a crisis to reverse. Agonal gasping is a brainstem reflex, not air hunger. The gurgling is pooled oral and pharyngeal secretions that she can no longer swallow or clear - she is not drowning, and because she has lost her gag she is not aspirating in any distressing way. Mottling to the knees suggests hours, not days.
Pharmacologic steps:
- Assess for treatable distress: brow furrowing, accessory muscle use, grimacing with care. If present, give the PRN morphine (about 0.05 mg/kg subcutaneously or IV) and plan a scheduled interval.
- Give an anticholinergic for the secretions - glycopyrrolate, roughly 4–10 mcg/kg parenterally, repeated as needed, or scopolamine. Reposition and allow drainage; deep suctioning is ineffective, painful, and frightening to watch.
- Consider a small benzodiazepine dose only if there is restlessness or rigidity; do not sedate reflexively.
Non-pharmacologic steps: turn her onto her side with the head slightly elevated, gentle oral swabs and lip balm, a fan near her face, dim lights, quiet. Stop all monitoring and non-essential line care. Confirm the DNR is visible and get the hospice nurse en route.
2. How do you respond to the request for oxygen and to “I'm calling 911”?
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Neither request is irrational; both are a mother trying to do something. Meet the impulse before correcting the plan.
On 911: ask what she is hoping will happen, then describe it plainly. “If you call, they will start CPR and breathing for her and take her to the emergency department. She would very likely die in the ambulance or in the department, not here in her room with you. Is that what you want, or do you want her to stay here?” Then commit: “Whatever you decide, I am staying on the phone with you.” If she cannot tolerate the DNR in the moment, honor her authority as the parent and coach her through it rather than arguing.
On oxygen: be honest that it will not change brainstem gasping, may dry her mouth, and tethers her. But if a low-flow cannula or a fan genuinely helps her stay calm and does not obscure Ana's face or delay comfort medication, a defined trial is reasonable: “Let's try it for twenty minutes. If her breathing has not changed, we turn it off.”
Close the call with concrete instructions and a callback time. Presence, not correction, is the intervention.
3. Her mother later asks whether to keep giving the dexamethasone and whether Ana is suffering. How do you answer?
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On suffering: answer directly and specifically, because vague reassurance is not believed. “I do not think she is suffering right now. She is unconscious, her breathing is automatic, and when I press on her brow she does not flinch. When there are signs of distress, we treat them, and I will keep checking.” Then explain what you are watching for and what the plan is if it appears - that converts reassurance into a shareable plan.
On the steroid: explain the trade-off rather than giving a verdict. Dexamethasone may still be reducing tumor swelling and headache, but in a dying child it can also contribute to agitation, fluid retention, and increased secretions. Ask what she has observed on it and what she is afraid stopping would do. If it is not clearly relieving symptoms, tapering or stopping is reasonable; if she cannot bear to stop, continuing it is not harmful in any way that matters now. Either way, frame the priority: “Our job now is not to treat the tumor but to keep her comfortable.” Also confirm she should not be given anything by mouth, and that the central line can be capped or used only for comfort medications while awaiting the hospice nurse.