Managing Status Epilepticus in Palliative Care: Accounting for Patient and Family Experience

woman in hospital visiting husband
woman in hospital visiting husband
There are considerations for treating these seizures as part of the overall goals of palliative care, which include the family's experience.

Terminally ill patients frequently exhibit signs of altered mental status. Among the many potential causes, nonconvulsive status epilepticus (NCSE) is a fairly common one that is often treatable. In an observational prospective study published in 2010 (n=290), NCSE was confirmed in 5.2% of patients admitted to palliative care with altered mental status.1 However, this condition often eludes detection because of its subtler symptoms compared with convulsive SE. “Diagnosis of NCSE is more challenging than diagnosis of convulsive seizures because the clinical presentation ranges from minimally altered mental status to coma without tonic-clonic activity,” according to the study authors.

Primary brain tumors and metastases are likely the most common causes of NCSE in the palliative care setting, with limited available data showing a prevalence as high as 20% among patients with these conditions.1 NCSE has also been observed in 6% of those with systemic cancer with no evidence of central nervous system involvement. In addition, intracranial hemorrhage, ischemic stroke, hypoxia, and metabolic disturbances may result in NCSE.

Despite the unique challenges involved in SE management in critically ill patients, there are currently no consensus guidelines to facilitate treatment decisions in this population. Recommendations for SE treatment in the general population, including intravenous drug delivery and close monitoring, may be unavailable or inapplicable in the palliative care setting.2

Patients with sudden, unexplained alterations in mental status or behavior should undergo electroencephalogram (EEG) evaluation. In a study of hospitalized critically ill patients, nearly 90% of NCSE cases were detected solely by EEG.3 “Concurrent EEG monitoring while attempting to break the status should be done at the time of diagnosis,” wrote the authors of a 2008 case report.4 “Continuous EEG evaluation during drug treatment of the seizures can be useful in selected cases but is not generally recommended in the palliative care setting,” although the use of portable EEG systems may be appropriate.

In general, treatment should be considered for all patients with NCSE. Of the 15 patients with NCSE in the 2010 study, 9 patients responded to anticonvulsant treatment, fully regaining consciousness and communicative ability before death.1

According to a paper published in 2014 in the Journal of Pain & Palliative Care Pharmacotherapy, lorazepam/diazepam and fosphenytoin/phenytoin are the first- and second-line treatments for SE, respectively.2 If these interventions prove ineffective, then midazolam, barbiturates, and propofol may be considered. “Administration of the aforementioned medications often requires monitoring along with access to resuscitative resources,” the authors stated. “Great care must be taken in timing, dosing, and combinations of medications administered.”

To further explore the management of SE in the palliative care setting, Neurology Advisor spoke with Sheryl R. Haut, MD, director of the Adult Epilepsy Program and chief of neurology service at Montefiore Medical Center at Albert Einstein College of Medicine in New York, and member of the American Academy of Neurology.

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Neurology Advisor: What are some of the challenges that SE may present in this setting?

Dr Haut: SE is associated with high morbidity and mortality, and therefore is typically treated aggressively. Many patients who are receiving palliative care may experience SE, including those with stroke, dementia, and primary brain tumors or brain metastases, among other causes. The overall goals for the population of patients who are receiving palliative care are different than for other patients with epilepsy or seizures, and it is sometimes appropriate to reconsider the goals of treating SE in this group. For example, aggressive treatment with benzodiazepines or barbiturates, which will reduce consciousness, affect respiratory function, and potentially require intubation, may not be recommended. The typical approach of using nonsedating antiepileptic medications to the degree possible to control the seizures, combined at times with lower doses of sedating medications to ensure comfort and extend quality of life, is optimal.

Neurology Advisor: What are some of the common treatment considerations for SE in this population, including when to stop EEG monitoring and transitioning usage of barbiturates/sedatives for SE management to comfort care?

Dr Haut: The treatment of SE in palliative care patients requires open communication with the primary medical team, the neurology consultants, and the patient, family, and caregivers. NCSE is common in [this setting] and can only be truly assessed using continuous EEG monitoring. However, continuous EEG monitoring is often uncomfortable for the patient; thus, it may be appropriate to reduce the use of this testing modality and rely on clinical manifestations of seizure. Use of benzodiazepines and/or barbiturates may be a helpful part of the comfort care plan or, conversely, may be hindering the effort to extend quality time for the patient. These variables must be reassessed frequently.

Neurology Advisor: Are there any additional treatment implications or takeaways for clinicians that you would like to note?

Dr Haut: Decisions regarding the treatment of SE in the palliative care population extend not only to patient comfort, but also to the sensitivities of the family. There are clinical situations (eg, myoclonic SE in a patient with severe anoxic brain injury) in which the patient may not actually be experiencing physical symptoms of seizures, but it is disturbing to the family to witness these movements at the bedside. There are considerations for treating these seizures as part of the overall goals of palliative care, which include the family’s experience.

Neurology Advisor: What are the remaining research needs pertaining to SE management in palliative care?

Dr Haut: As the field of palliative care continues to reach widespread practice, this is a very important area of research. There are currently relatively few specific guidelines as to managing SE in this population, and more attention is needed [to inform the development of such guidelines].


  1. Lorenzl SMayer SFeddersen BJox RNoachtar SBorasio GD. Nonconvulsive status epilepticus in palliative care patients. J Pain Symptom Manage. 2010;40(3):460-465.
  2. Dulin JDNoreika DMCoyne PJ. Management of refractory status epilepticus in an actively dying patient. J Pain Palliat Care Pharmacother. 2014;28(3):243-250.
  3. Claassen JMayer SAKowalski RGEmerson RGHirsch LJ. Detection of electrographic seizures with continuous EEG monitoring in critically ill patients. Neurology. 2004;62(10):1743-1748.
  4. Lorenzl SMayer SNoachtar SBorasio GD. Nonconvulsive status epilepticus in terminally ill patients-a diagnostic and therapeutic challenge. J Pain Symptom Manage. 2008;36(2):200-205.