Terminal lucidity responses might range from wordless but emotional exchanges to substantial memory recovery. Photo by hisa nishiya/Getty Images
It was the red jelly that did it. It was Christmas 1999 in Rapid City, South Dakota, and Ward Porterfield, 83, was in a nursing home. He had been diagnosed with dementia three years earlier; he was confused and disoriented and eventually he no longer recognised his daughter, Kay. “When I went in,” she says of her later visits, “he didn’t know me at all.” That Christmas, he refused to eat. “Finally I just told them: ‘Bring him jello, he likes jello. Red jello.’ And he looked at me, really deeply, and said: ‘So. I suppose the jello’s gonna be my last meal. You’re gonna try to starve me, eh?’ That was like: ‘What’s going on here?’”
Her surprise wasn’t just at his coherence, but that the tone of this reply was undeniably her father’s dry humour. Later that night, nurses told Kay, when children visited to sing carols, tears streamed down Ward’s face. Kay becomes emotional recounting it. “Don’t cry,” a nurse told him. Ward looked at her. “If you were in my position, you’d cry too,” he said. “These are the last Christmas carols I’ll ever hear.”
The next morning when she visited, Ward recognised his daughter instantly. And for the next two days they spoke. “It was as if his mind had been unplugged for so many years,” she remembers, “and then all of a sudden it got plugged back in again.” Then he lost consciousness. Two days later, he died.
Kay Porterfield believes this was a case of terminal lucidity, a phenomenon in which people whose brains have not functioned properly for significant periods of time – often many years, and mostly because of neurodegenerative diseases such as dementia – suddenly regain cognition and interact with coherence. Responses might range from wordless but emotional exchanges to substantial memory recovery. The person then dies within a handful of days, if not hours.
It’s an experience the German biologist Michael Nahm brought to prominence in 2009, after learning about it from 18th- and 19th-century medical case reports. He published an article about it and coined the term “terminal lucidity”. Yet despite growing interest and some research (involving surveys and questionnaires) over the past decade, we’re no closer to knowing what causes it. Now, however, scientists hope a group of studies will change that.
“In 2015, I came across a newspaper article that described a situation like this, and I thought it was really interesting,” says Dr Basil Eldadah, who is leading this charge. “I sort of filed it away. Then around 2017 it got pulled out of the files in my mind and I thought: ‘Maybe there’s something that we can do about that.’”
Eldadah is supervisory medical officer at the Division of Geriatrics and Clinical Gerontology at the US National Institute on Aging (NIA). In 2018 he and his team set up a workshop, inviting key figures to size up what had been learned so far. Eldadah and the NIA research staff had already given it a new name, “paradoxical lucidity”. “To call it terminal lucidity implies that this is a phenomenon that occurs shortly before death,” he says. “If you’re looking for it prospectively, you can’t quite say that.” Also, let’s face it, the terminology might be unhelpful. “If you’re recruiting people into a research study,” he says, “you probably don’t want to tell them: ‘Hey, we’re going to be looking for this phenomenon that occurs right before you die.’”
The workshop resulted in a paper, published in the Alzheimer’s Association journal Alzheimer’s and Dementia, concluding that the study of such lucidity could “provide insight into both underlying neurobiology and future therapeutic possibilities”. From that, six studies were funded, which are getting under way. “Based on the preliminary data that we heard from our grantees,” says Eldadah, “I think it’s safe to say that this phenomenon exists, and it likely exists more often than we expect, or than we would have believed.”
Personally, I have no trouble believing it, having witnessed it myself. In the mid-1990s, with her eyesight rapidly going and her memory diminishing, my maternal grandmother, Kitty Lewis, moved into a care home, after suffering a series of mini-strokes and being diagnosed with vascular dementia. From there, her behaviour began to change – this prim, proper, polite and warm woman, for decades a stalwart of whichever community she was in, had her personality twisted and transformed by dementia, and she became paranoid, aggressive, verbally abusive. Her short-term memory was shot, and the rest of it was patchy. She would just about know who we, her family, were, but for the last couple of years, angry, depressed and confused, she wouldn’t want to see people. We visited anyway, sitting with her while she wanted to die.
Then, in October 2004 she was admitted to hospital, having collapsed with a urinary tract infection. For a week she was barely conscious, but on the Sunday when my parents, cousin and I visited, she was sitting up in bed, smiling as we walked in. For the next two hours she laughed and joked, completely cognitive, coherent … lucid. A lifetime of memory had returned, and we took advantage of it as she regaled us with escapades from her past. My mum, who knew many of them, quietly verified them. Her funny, eloquent, vibrant mother had returned. “It all came back to her in one rush,” remembers my mum. “It was like a bolt of lightning. The clouds cleared.” After we left that afternoon, my grandma slipped back into a semi-conscious state, soon not knowing who my mother was, and died within days.
“It’s stories like these that inspire us to try to do something about this from a scientific perspective,” says Eldadah. His work is pushing ahead now. Dr Sam Parnia, a British critical care physician and pulmonologist who has been working in the US for 15 years, is associate professor of medicine at NYU Langone Medical Center in New York. He is leading a study for Eldadah. “If you talk to hospice nurses and palliative care doctors, they all know about this,” he says of terminal/paradoxical lucidity. “But no one’s ever studied it properly because no one ever thought anyone would take it seriously enough. So what I wanted to do is to help move this into the scientific realm.”
He plans to monitor 500 dementia patients at the end of their lives, working with hospices in New York City. With consent from patients’ next of kin, Parnia’s team will monitor them on electroencephalograms (EEGs). “The benefit of it is that it has 24/7 video recording of the individual, what they’re doing. And at the same time it’s measuring their brain electricity. We’re going to get a full picture of what the person says, how they act out.” The outcome could be groundbreaking. “If we could track what’s happening in the brain,” he says, “we might be able to find ways to stimulate the brain in those who are unfortunately in a state of complete dementia, and try to stimulate them into consciousness.”
These lucid episodes do not occur only in dementia patients. “I’ve seen it in cancer patients particularly,” says Dr Mayur Lakhani, a Loughborough GP and former chair of the National Council for Palliative Care. One person who hadn’t been coherent for some time was suddenly “able to have a very lucid conversation with me and their family, about what they wanted to do when they were younger”.
Tina McMillan, a massage therapist and former medical transcriptionist in Knoxville, Tennessee, saw the phenomenon with her father, who had multiple myeloma. Marshall James McMillan was raised in the mountains of West Virginia. His own father was an “abusive alcoholic” who made moonshine, and in 1937 when Marshall’s mother died of sepsis, the 14-year-old Marshall, eager to leave home and “fight some Nazis”, took a quart of moonshine to the army recruitment office and got the commanding officer drunk enough to sign him up. In 1944, aged 20, he stepped on a mine in Italy and lost his right leg. He earned a Purple Heart and Bronze Star.
“So he was not one to give up,” says McMillan of her family’s choice to not explain to Marshall that, when the multiple myeloma took over in 2008, he was in a hospice. “As a person’s organs begin to fail they get metabolic waste material in their bloodstream and their brain, and it mimics dementia,” she explains. “They lose the ability to really process. What I experienced with my dad was that we got to watch him very slowly fade away. He became confused. He knew who we were but he greatly withdrew from being interactive with us. He was in the room but not in the room. In his body but not in his body.”
It was a heartbreaking process. After an ambulance delivered Marshall to the hospice, the staff introduced themselves. “The chef said: ‘Mr McMillan, I’m the head of the kitchen and you can have anything you want.’ My dad said: ‘Could I have a milkshake?’ I was standing there with the administrator, and I whispered: ‘He’s diabetic, he can’t have that.’ And she squeezed my arm and said: ‘Honey, none of that matters now.’ So that was hard.” Soon after that, her father began “experiencing visits from people who were already dead. One day I walked in and he said: ‘You see that room across the hall? Your mother and your grandmother and your aunt Dot have been in there just cackling up a storm.’ And those are all dead people.”
But one Friday, Marshall “snapped out of it”. He was sitting up in bed. “We saw him talking to somebody and the colour was back in his cheeks. There was all this excitement in the room – he was back to being himself. He was a very, very smart man, a very astute commentator on the human condition, and he was back to commentating,” laughs McMillan. One of the staff brought him his favourite drink, but he rejected it. “Now he was aware that he couldn’t have a milkshake. He said: ‘You can’t give me that.’” For the next few days he was back to his old self, but after that he once more withdrew from interaction, falling into “complete and utter separation”.
Such experiences have a profound effect on the person’s relatives. For my family, that afternoon with my grandmother was pure joy, almost – almost – balancing out years of sadness. And witnessing it shakes you up somewhat, because it doesn’t seem to make sense. “It opened me up to possibilities,” says Kay Porterfield of her father’s Christmas resurgence. “That I don’t know this is this way and that is that way. And it has made me feel more open to the possibility that our mind is not a physical thing and it is not located in our body. Maybe it’s just a tenant. Our mind is a tenant in our bodies.”
The opportunities, Eldadah says, are immense. “It gives us some pause with regard to our current theories and understanding about the nature of dementia. We’ve seen enough examples of this to be reassured that dementia can be reversed – albeit temporarily, very transiently – nevertheless, it does reverse. And so the question then is how.”
At the very least, learning more about such lucidity could help to prepare relatives and caregivers for it, to help them to emotionally handle it, and to let them know that it is not a sign – as some understandably think when it happens – that the patient is improving. “We have to be careful, because sometimes people think that their loved one is getting better,” says Lakhani. “That’s false hope. But it is an opportunity, a chance to connect.”
Of course for many people, it won’t happen at all – we don’t all have the luxury of such spirited resolutions. But for those who do, it’s invaluable. “He struggled,” Porterfield says of her father’s death. “It was not an easy passage. But I was just grateful for those three days.”