Here’s a sad story about a family’s struggle with their young son’s fatal ordeal with New Onset Refractory Status Epilepticus (NORSE). NORSE is basically super-refractory status absent an obvious precipitating injury such as encephalitis. The main theme in this account is that the family felt under-informed along the way and then blindsided when it came time to discuss a transition to palliative care.
That frequent and clear communication is both imperative and fraught with challenges will be well-known to most everyone reading this. What I wanted to highlight from this article is actually the follow-on commentary by two neurocritical care physicians, who emphasize that palliative care shouldn’t be reserved for the situation where the patient is on the verge of death. Too often, our palliative care colleagues are consulted when there appears to be no viable means of curing the patient, death is imminent, and assistance is needed with terminal extubation and/or withdrawal of other life-sustaining interventions. However, and this needs to be done with sensitivity so as not to take away the family’s hope, earlier involvement of the palliative care team can be quite beneficial. The palliative care team can recommend measures to ensure the patient’s comfort even while full-on efforts to reverse the condition are underway. They can help clarify the goals of care, ensuring that the patient’s care plan comports with his values. And, if a transition to purely palliative care is eventually desired, it’s helpful for the relationships to have been established earlier in the hospital course and not at the last minute.