The Unsettling 'Surge' People Can Experience Right Before Death

The effects of neurodegenerative diseases and brain injuries are generally severe and have a high impact on typical functions. Anyone who has had a loved one with dementia knows the pain that accompanies their confusion and lack of recognition. Eventually, a disease, such as Alzheimer's, progresses to affect one's ability to communicate, relying on a few words or phrases that can be difficult to interpret. But in some cases, something a little strange happens. Near death, someone suddenly seems to regain comprehension and will be able to carry on a conversation where they could not before. This interesting surge in consciousness is referred to as terminal lucidity.

Characterized by an incongruous pulse of clarity and hyperactivity, terminal lucidity is not an official medical term and is based largely on anecdotal accounts, but there is some literature within the field of neuropsychiatry to back it up. Reports of such a phenomenon have existed since at least the 19th century. Without proper education, this behavior can startle and confuse both caregivers and loved ones. Often, terminal lucidity is described as someone suddenly becoming like themselves prior to an illness, and such a display can result in a complex network of bittersweet emotions. However, while research is ongoing, we do not know the exact experiences of someone undergoing terminal lucidity, and we are left guessing what it means.

Our understanding of terminal lucidity relies on limited research methods, including case reports and recollections of loved ones. For over 200 years, published accounts have provided detailed studies of particular instances. For example, in 1822, there was a 17-year-old boy who had suffered a head injury at the age of 6, leading to a brain abscess that resulted in progressively deleterious symptoms, including chronic pain and an inability to recall memories. When additional physical symptoms, such as vomiting, manifested, the boy was hospitalized. One day, he abruptly left the hospital bed and declared that he was no longer in pain and intended to go home that day. Within minutes, he was dead.

Russian researchers described the cases of three patients with schizophrenia in 1975, each of whom displayed surprising clarity around a month before death. In one case, a patient had been catatonic for 17 years and seemed to regain some comprehension around a month and a half before dying. Another patient exhibited a remission of schizophrenia symptoms once he became fatally ill a month before his death.

In a 2012 review, Michael Nahm and colleagues detailed a few stories that had been relayed to them, including the case of a grandmother with Alzheimer's disease. This particular patient had not spoken to or appeared to recognize her family members for years. Then, a week before her death, she began having conversations with her granddaughter, in which she offered words of advice and inquired about several family members.

One thing you will notice about the cases mentioned above is that they are anecdotal. This creates a challenge when scientifically investigating such a phenomenon, as these are not controlled settings, and often the accounts do not come from trained observers. Occasionally, the confusion and distress surrounding death can create a vacuum, drawing leaps in logic out in search of meaning behind such deep suffering.

That said, the neuroscience around terminal lucidity is a bit hand-wavey thus far. Some EEG studies have shown an increase in gamma wave activity in the brain, which is associated with higher-order neurological functions including memory recall, in the minutes surrounding death. There are some suggestions that, as the brain loses oxygen, it becomes highly synchronized, demonstrating a level of organized activity. Another possible mechanism involves the disinhibition of damaged circuits in patients with neurodegenerative diseases. While loss of neurons is pervasive in these cases, perhaps it is possible that certain neurological functions can be accessed this way.

Importantly, terminal lucidity is repeatedly noted by caretakers. One study investigated the experiences of palliative healthcare workers, and seven out of 10 saw patients suddenly become lucid shortly before death. This is an example of how further investigation, as opposed to dismissal, is necessary for elucidating inexplicable behaviors.