Death seizures and myoclonus: what they look like and how nurses handle them

A muscle in your father's arm jumps once, hard, like he's been startled in his sleep. A few minutes later his leg does the same. An hour later his whole body stiffens for ten seconds and then his hands tremble through a wave of jerks. You're at the bedside at three in the morning and the home hospice nurse isn't due back until eight. This article is what to do.

The wider context is in the last hours: breathing changes and signs that death is approaching. The piece below is the specifics on movement.

Myoclonus vs seizure

The two get lumped together by families and by some ward staff. They aren't the same thing.

Myoclonus is a brief, single, involuntary muscle jerk. One twitch in an arm. A leg kicking out once. A whole-body startle that looks like the patient was poked. The jerk lasts a fraction of a second. The patient does not lose consciousness (they're already deeply asleep or unresponsive). There's no tongue biting, no rhythmic shaking, no incontinence beyond what's already happening.

Myoclonus in dying patients is common and usually harmless. It's caused by metabolic shifts in the last days: opioids accumulating in failing kidneys, electrolyte imbalances, low oxygen, a buildup of toxins the liver is no longer clearing. Hospice nurses see it daily. They note it. Most cases don't need treatment beyond reviewing whether the morphine or fentanyl dose should be rotated.

A seizure is rhythmic. Stiffening of the body (the tonic phase) followed by jerking movements that repeat in a pattern (the clonic phase). The jaw clenches. The eyes may roll up or to one side. Breathing changes (sometimes pauses entirely for the duration). The arms and legs move together or in alternating waves. A full tonic-clonic seizure usually lasts one to three minutes. The patient may go limp afterward (postictal phase) and stay unresponsive longer than before.

Seizures in dying patients are less common than myoclonus but more common than they are in healthy people. The causes that show up in palliative wards: brain tumours or brain metastases, uraemia in kidney failure, hyponatraemia (low sodium), hepatic encephalopathy in liver failure, withdrawal from anticonvulsants the patient used to take, and rarely intracranial bleeding from a low platelet count.

What hospice teams give

If the patient has known seizure risk (brain primary cancer, brain mets, a history of epilepsy, advanced renal or liver failure), most Singapore home hospice teams (HCA, Dover Park outreach, Assisi, Bright Vision) will leave anticonvulsant medication at the bedside in the last weeks. The standard kit:

Midazolam (Hypnovel, Dormicum) for active seizures. A subcutaneous or buccal dose of 5 to 10 mg stops most seizures within two to five minutes. Buccal midazolam (the liquid squirted between cheek and gum) is what the family is usually trained to give if the nurse isn't there. The hospice nurse will have shown you the technique and left a labelled syringe on the bedside table. For continuing seizure risk, the team may start a continuous subcutaneous infusion of midazolam via syringe driver over 24 hours.

Levetiracetam (Keppra) for prevention. If the patient has been on oral Keppra and can no longer swallow, the hospice team switches to the injectable form, given subcutaneously or by short IV push if a line is in. Phenytoin and sodium valproate, both common oral anticonvulsants, don't transition well to the subcutaneous route, so most palliative teams swap to Keppra or midazolam in the last days.

Phenobarbital for refractory seizures. Subcutaneous phenobarbital is the next step if midazolam isn't holding the seizures. It's heavy sedation and the family should expect the patient to be deeply unconscious from this point.

For myoclonus that's distressing the family or the patient, the first move is opioid rotation: switching from morphine to fentanyl or methadone, which produce less myoclonus in failing kidneys. A small dose of midazolam or clonazepam (Rivotril) can settle stubborn myoclonus without sedating heavily.

Keeping the patient safe during a seizure

The instinct is to hold the person still. Don't.

Move things out of the way. The bedside table, the IV pole, the oxygen tubing if it can be lifted clear. If there's a cot side, leave it up. Pillows along the edges of the bed prevent the patient from rolling off if the seizure is forceful.

Don't put anything in the mouth. No spoons, no fingers, no rolled towels. The old advice about preventing tongue biting causes broken teeth and bitten fingers. The patient will not swallow their tongue.

Turn the patient onto their side if you can do it gently. The recovery position keeps saliva and secretions from pooling in the airway. If the seizure makes turning difficult, wait until the convulsion eases.

Time it. Look at the clock when the seizure starts and again when it stops. A nurse or doctor will ask. Most seizures self-resolve within two minutes. Longer than five is status epilepticus and needs urgent intervention.

Give the rescue medication if you've been trained to. Buccal midazolam (squirted between cheek and gum) is the home rescue dose. The hospice nurse will have shown you how to draw it up or will have left a pre-drawn syringe with the dose written on the side. Give it slowly, half between each cheek.

Call the hospice line. Not 995 if the patient is on a hospice programme with a do-not-resuscitate order in place. The hospice nurse will talk you through the next step and decide whether to come out. Paramedics arriving without the DNR paperwork visible can lead to resuscitation against the patient's wishes. See home death vs hospital death in Singapore for how to keep the paperwork accessible.

After the seizure

The patient will usually be deeply unresponsive for a stretch afterward. Breathing may be slower or noisier than before. Skin may look paler. The hospice nurse, when they arrive, will check vital signs if the family wants the reassurance, give a follow-up dose of midazolam if the risk of recurrence is high, and start or adjust the syringe driver.

Some patients do not regain the level of awareness they had before the seizure. Others have a single seizure and continue their decline at the previous trajectory. A few seize repeatedly over hours and die during or shortly after one of the episodes. The hospice team will tell you which pattern they're seeing.

What families ask

Is she suffering? During the seizure, no. The patient is unconscious for the duration of a tonic-clonic seizure. Myoclonus happens in patients who are too deep to feel it. Afterward, breathing changes can look distressing but reflect the body's response, not pain. Pain medication is already on board and the team will top up if a grimace or moan suggests breakthrough. If you're tempted to refuse the next morphine or midazolam dose because you're worried the medication will "push her over the edge," talk to the hospice nurse before you decide. Properly dosed palliative medication does not shorten life. Refusing it because the family was frightened of the drug is one of the few regrets that follows people for years afterwards.

Could we have prevented this? Usually no. The metabolic shifts that cause seizures in the last days are part of the dying process. Anticonvulsants reduce frequency, not the underlying chemistry.

Should we go to the hospital? If the patient is on a hospice programme and the family understands this is part of dying, no. The hospital will load the patient with IV anticonvulsants, possibly intubate, and prolong the dying without changing the outcome. The hospice team can give the same rescue medication at home or in the inpatient hospice bed. If the seizure happens in someone who is not yet enrolled in hospice and the family wants full medical management, then yes, dial 995. The choice depends on the goals of care that were set earlier, not on the severity of the seizure.

Will it happen again? Often yes, especially if it's a metabolic cause that hasn't been corrected and won't be. The hospice team will adjust medication to reduce the frequency and severity. Most patients in this phase have hours to a few days left, and the seizure activity tends to subside as the patient deepens into unconsciousness.

The moment of death often follows within hours of the first seizure cluster, especially when the cause is uraemia or brain metastases. See the moment of death: what happens for what comes next.