Palliative and End-of-Life Epilepsy Care

Palliative epilepsy care focuses on comfort, dignity, realistic treatment goals and seizure control when a person has advanced life-limiting illness. The approach can differ from standard long-term epilepsy management because routes of medication, burden of investigations and the value of hospital transfer may change.

Palliative care is not the same as stopping care

Palliative care aims to reduce suffering and support quality of life. It can be given alongside disease-directed treatment and is not restricted to the final hours or days of life.

For someone with seizures, this includes anticipating prolonged events, minimising distress and avoiding preventable treatment disruption.

Why seizure diagnosis can become harder

People with advanced illness may have delirium, syncope, rigors, terminal agitation, metabolic encephalopathy or medication-related movements that can resemble seizures.

Clinical diagnosis therefore requires context, and EEG may be useful when the result would meaningfully alter treatment.

Medication routes may need to change

Swallowing can become difficult near the end of life. Alternative routes may include buccal, intranasal, rectal or subcutaneous medication depending on the drug, local practice and available expertise.

The aim is to maintain effective treatment without creating unnecessary burden.

Rescue plans matter

A clear plan should state when rescue medication should be given, when repeated dosing is appropriate and when emergency transfer is—or is not—consistent with the person’s goals of care.

Carers and clinical staff need instructions that are practical in the setting where the person is being cared for.

Status epilepticus still deserves treatment

Prolonged seizures can cause distress and are generally treated promptly even in palliative care.

However, escalation to intensive care, intubation or anaesthetic coma may not fit every person’s goals or prognosis. Decisions should be individual and documented.

Avoid abrupt medication interruption

Suddenly stopping antiseizure medication can provoke seizures. Medication review near the end of life should therefore plan how essential therapy will continue if oral administration becomes impossible.

Deprescribing decisions should distinguish medicines used primarily for long-term prevention from those needed for immediate symptom control.

Communication is part of seizure care

Families may fear that every seizure means immediate death or suffering. Clear explanation can reduce panic and help relatives understand what to expect and what actions to take.

Advance care planning is especially valuable when seizures are already part of the person’s illness.

Related reading

Sources and further reading

Evidence checked: September 2026.

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