Paradoxical Lucidity: Moments to Treasure in Dying and Dementia
One of the most intriguing, and perhaps confusing signs of imminent death is a period of a sudden improvement in a dying person’s mental alertness. It is not uncommon for a dying person who has been unresponsive for days, if not longer, to abruptly wake up and talk normally. At such times, the person may even eat or get out of bed. Professionals in the end of life field often speak of this as the “rally.” Loved ones may think this means the person will now have a longer time to live or may even be getting better. But just as suddenly as it occurred, the rally may end, and the person may die very soon afterward. In fact, we recognize such an event as a sign of imminent death.
This aspect of end of life has been observed for centuries. About 10 years ago this symptom of dying was given a new name: “terminal lucidity.” How it occurs is not understood. There has been some speculation that the body releases internal steroids that flood the brain and body, leading to energizing activity. But for obvious reasons, there haven’t been any scientific studies of this phenomenon. First of all, there is no way to predict that it will happen for this particular dying person. Second, it would be ethically questionable and procedurally difficult to intervene at such times in a way that would allow scientific investigation. Doing an MRI and blood work just seems counter to compassionate care.
Speculation about why terminal lucidity occurs is another matter. Some people link this event to the dying person needing to have closure before he or she dies. Others feel the dying person is offering the family a last opportunity to have closure. In my experience with the dying, I have seen terminal lucidity quite a few times. In many of those cases, it would have been appropriate to assume it was about closure for the dying person or loved ones. But I have also seen terminal lucidity occur when closure didn’t seem to be an issue at all. Not that it wasn’t a welcome opportunity for the dying person and loved ones to express love one more time together.
As doulas, we should explain that terminal lucidity, also now called paradoxical lucidity (PL) is one of the signs that might happen near death. I have seen widely varying estimates on its frequency at end of life. In my own experience, I would guess that I’ve seen an episode of PL 10-20 percent of the time. It can occur literally minutes before a person dies, or any time from hours to a few days before death. PL may last for just minutes, or for hours. On rare occasions, it can even last days.
Loved ones need to know about this dying phenomenon so they understand it doesn’t signal a real recovery or give them hope for a longer time with the dying person. They also need to know that it may not last long, so they should take advantage of it when it happens. PL is a time to exchange heartfelt words of love, thanks, and forgiveness.
When PL occurs, it can be dramatic. I remember one time a woman had been unresponsive for over a month. Then one morning she “woke up” and announced to her daughter that she wanted her friends to come for lunch, so she could say goodbye. She told her daughter that she was going to die later that day. Naturally, this was confusing and even frightening to the daughter. But she did what her mother asked. Later on, she told me that her mother held center stage throughout lunch, talking and laughing with her friends as she said her goodbyes. After the friends left, the woman told her daughter that she was very tired and needed to lie down. When the daughter checked on her a couple of hours later the woman couldn’t be roused. She had slipped back into her coma-like state and died that evening.
Another time, I directly observed an instance of PL that lasted only seconds, but it was profound and deeply moving. The dying person had been a man of tremendous intellect. There were over 40 patents with his name on them, and he had run a large, very successful company. But in his eighties, he was forced to retire when Alzheimer’s disease made it impossible for him to continue working. A year and a half later he was actively dying. I arrived to take an overnight vigil shift at about 9:00 PM. His hospital bed was in a ground floor study in his home. His wife sat with me for hours at his bedside, recounting stories of his accomplishments, generosity, and inner sweetness. There was such love and reverence in the way she spoke about him that it seemed even more tragic that for the last couple of months he didn’t recognize her or talk.
A little before midnight she decided to get a few hours of sleep. As she was leaving, she leaned down so her face was just above his and tenderly placed her hands on both his cheeks, softly saying: “I love you.” Then it happened. He opened his eyes, looked directly at her and said quite clearly: “I love you too.” After gazing directly into her eyes for another moment, he closed his and went back into his coma-like state.
His wife sat back down again and said to me in disbelief: “He looked directly into my eyes in such a knowing way. I know he knew me. I’ve been saying goodnight to him this same way for months without a response. I can’t believe what just happened.” We talked for a little while longer as I told her about the “rally,” as a sign that death might be close. She told me she was okay if he died while she was lying down, partly because of what had just happened.
Three hours later, close to 4:00 AM, she returned. We sat together again without any more alertness or movement in her husband’s body. Then about 6:30 AM he took his last breaths. While his moment of PL was very brief, it was nonetheless dramatic and inexplicable, given how advanced his dementia was and how close he was to death.
PL is getting new scrutiny because of what it might imply about the nature of dementia. In August 2019, a group of researchers from different institutions published a major paper on the subject in Alzheimer’s & Dementia, The Journal of the Alzheimer’s Association. That article, “Paradoxical lucidity: A potential paradigm shift for the neurobiology and treatment of severe dementias,” was the culmination of an extensive literature review of what is known about PL. This review began following a workshop on the subject convened by the National Institute of Aging in June 2018.
According to the journal paper, most of the time, PL occurs in dementia patients close to death. In two different case samples, 43-44% of the episodes of PL occurred within the last day before death; 38-41% of the episodes occurred within 2-7 days of death, with the remainder of incidents occurring within 8-30 days of death. As to the length of the episodes, one sample of cases showed that 3% of them lasted from seconds to less than 10 minutes, 16% lasted 10-30 minutes, 24% lasted 30-60 minutes, 29% lasting several hours, and just 5% lasted several days.
Since there hasn’t been any direct scientific research performed up to now on this phenomenon, the researchers don’t have a single or likely hypothesis about the physiology behind PL. One possibility is that as the brain is dying, or is starved for oxygen, it generates a surge in neuroelectrical and neurochemical activity—perhaps as a last-ditch effort to maintain function—that might result in sudden integration across the neural network of the brain, resulting in lucidity.
Another hypothesis is that consciousness may not be produced, or even occur solely in the brain. There may be other pathways to access memories even when parts of the brain have been severely damaged by dementia or have broken down in the dying process.
Understanding the nature of PL might have an impact on how pain and agitation are managed in end of life care. The medicines typically given for those symptoms may lessen the chance that PL occurs. Also, a greater understanding of PL might have a very meaningful impact on dementia care. If scientists can understand the mechanism for PL it might lead to treatments for dementia that would slow the progress of the disease or even lead to improvements in mental functioning.
The challenges for formally studying PL are obvious. Even defining what PL is will not be simple given the great variability in the phenomenon. Is speaking a single intelligible word with direct, and what appears to be a look of knowing recognition, qualify as PL? In what I witnessed in the story above, I would say yes, but that is a subjective reaction. How do researchers find relevant measurements of PL? Are there clear indications that PL is more likely in one case or another and what are those markers? Since it manifests suddenly, how do researchers even get to observe it when it happens? If, as the authors of this study suggest, monitors could be used in inpatient settings to capture the phenomenon, how do they deal with the ethical issues of intrusion?