Why Some Severely Ill Patients Get Better Just Before They Die?
When Alita Porto Reis passed the age of 70, she began to lose her independence and need help due to Alzheimer's. It got to the point where she could no longer eat, bathe, or dress as the disease progressed. He hardly recognized anyone. However, in the last days of his life, he had a sudden improvement.
“Out of nowhere, he started talking to my mother. He remembered everything, ”says his granddaughter Samanta. “My grandmother always had a very strong personality, but she forgot who she was, she lost her essence. And, in the last days, she returned ”.
That return also had a special meaning for his daughter Ana Lucía. “He ended up comforting my mother with great affection, she said that everything would be fine on the 31st. My mother cried a lot, she said she didn't want to lose her. He ended up dying exactly on August 31, 2011 ”, recalls Samanta. “In a way, all of this helped my mother a lot because she was able to fulfill her mother's wish. He was able to sit down and talk to her one more time and say goodbye. "
Dr. Frederico Fernandes, a doctor at the Hospital das Clínicas of the University of Sao Paulo (USP), is not surprised, he says that "everyone who works in hospitals has a story like this." Something similar can be said of nursing homes. In the UK, a 2008 survey of employees found that 7 in 10 saw patients with dementia or mental confusion improve shortly before they died.
There have been terms from different languages and times to describe this same phenomenon, inexplicable until today for science: improvement of death, last goodbye, illumination before death, improvement of end of life, health visit, improvement of goodbye, episodes of lucidity, paradoxical lucidity, terminal lucidity or the last ray of the sun (from Chinese 回光返照).
But why do some patients with chronic diseases - even recent ones like Covid-19 - show a sudden improvement before dying?
The "transcendental subject"
The question comes at least from the time of Hippocrates, the Greek physician considered the father of Medicine who was born four centuries before Christ. He and other ancient Greeks believed that the soul remains basically intact while the brain is affected by physical malfunctions or disturbances of the mind.
“They believed that, during and after death, the soul freed itself from material limitations, regaining its full potential. The human mind would be more than a mere product of the physiology of the brain, perhaps even involving a kind of 'transcendental subject' or 'hidden inner life' ", explains to BBC Brazil the German biologist Michael Nahm, who coined the term" lucidity terminal “for this phenomenon and focused on historical accounts over hundreds of years.
There are several hypotheses that try to explain what happens, but none of them have been tested so far. Among them are the normal oscillations in critically ill patients, a chemical reaction in the body that would function as a survival instinct. Also chance, or the persistence of consciousness during death. Or the confirmation bias, that is, people die all the time, but we end up remembering amazing stories of those who got better before they died.
There are also several obstacles, including ethical ones, to testing these hypotheses, such as performing invasive examinations in critically ill patients. But, what would be the relevance of understanding all this? For Nahm, the studies can, in theory, open doors to understanding the mechanisms around memory beyond the nervous system, for example. "If memories are not only stored in the brain, it would certainly increase our understanding of memory processing and the human mind, because it could not be reduced to a mere by-product of activated neurons," he says.
What do the studies say?
Researchers and experts say fluctuations in consciousness are common in dementia patients in the early to moderate stages of the disease. But the cases linked to this phenomenon specifically deal with unexpected episodes of lucidity in people who had lost the ability to communicate comprehensively.
Most of the studies and reports on this topic focus on patients with neurodegenerative diseases, but there are others of people who had tumors, brain abscesses, meningitis, advanced lung disease, coma, or stroke, for example. And this sudden improvement doesn't always happen on the eve of death.
In 2009, Michael Nahm and Bruce Greyson, from the Department of Psychiatry and Neurobehavioral Sciences at the University of Virginia (USA), collected 49 cases described in the medical literature. The small sample does not allow to draw broad conclusions on the subject, but it does give some clues. Of the 49 cases, 43% had a sudden improvement one day before death, 41% from two to seven days, and 10% from eight to 30 days. Most of the patients suffered from dementia, the most common form of which is Alzheimer's disease.
In general, this syndrome has a condition of progressive brain atrophy, loss of synapses and neurons, and accumulation of toxic substances associated with cognitive impairment that involves several areas, such as memory, language, and reasoning.
The prevalence of dementia among patients with sudden improvement on the eve of death also appears in a study by the philosopher and cognitive scientist Alexander Batthyány, a researcher at institutions in Hungary, Austria, Russia, and Liechtenstein. He analyzed 38 cases of patients with dementia. Of the total, 44% of the improvement episodes occurred one day before death and 31%, two to three days. Furthermore, 43% of the episodes lasted less than an hour and 16% lasted a day or more.
But so far, there are no studies showing how many cases actually exist per year.
The main hypotheses
A group of 10 researchers, including Nahm and Batthyány, analyzed the evidence in 2018 and came to the conclusion that it is highly unlikely that this phenomenon is explained by the regeneration of affected neurons over time. On the other hand, these changes in consciousness may reflect "complex adjustments in signaling cascades (one event triggers the other), synaptic modifications, neural network interactions, and perhaps temporary compensation or reversal of chronic functional inhibition due to neurotoxic proteins."
Fernandes, from the University of Sao Paulo, hypothesizes that the body emits a discharge of stress hormones when it realizes that it is close to death, a situation known as "fight or flight", which is a kind of instinct of physiological conservation.
Explains that, in the immediate previous phase, there is a release of adrenaline and other substances that cause changes in the body, such as increased heart rate and blood pressure, which improve the functioning of other possibly compromised organs, such as better activation of neuronal and even the patient's lucidity. “This can be when the body feels that it is about to die. Then I would have this release, but it is transitory. And when these compounds are depleted, the patient worsens and dies ”, he explains.
According to him, if this theory is confirmed, it could also provide clues as to why this sudden improvement is rare. “In patients with severe respiratory diseases, for example, the consumption of stress hormones has already occurred before the patient has the opportunity to have such an improvement. But some patients who have this reserve can make use of this physiological device ”.
Stafford Betty, a professor of Religious Studies at California State University, says the problem runs through what some call the soul. "The reason these moments of lucidity appear is that the consciousness of being (which some call soul) has managed to free itself from the brain and function independently of the nervous system," he says.
Can it even happen during what we know as "death"? Perhaps so, explains neurophysiologist Jimo Borjigin, from the University of Michigan (USA). He conducted a study with mice in 2013 that found that even after the heart and blood circulation stopped, the brain continued to function. More specifically, there were gamma waves, associated in humans with consciousness. This could explain experiences of terminal lucidity, for example.
Borjigin says that changes in oxygen levels cause the brain to make people with sleep apnea wake up and start breathing again, and a similar mechanism occurs with patients with chronic diseases.
"In these cases, when a threshold is crossed, the brain is activated and temporarily increases its activity with a high level of consciousness that allows you to speak, act rationally and perhaps that is what is behind terminal lucidity." One of the hypotheses pointed out by the study led by Borjigin is that, as oxygen and glucose levels fall or fluctuate, there is an increase in neurotransmitter levels that would result in transient or unstable activation of the brain. "But these increases in electrical activity or neurotransmitter release would not explain how there can be an improvement in communication or synchronization in the brain," he says.
Mind and brain
For Peter Fenwick, who was a professor at the Institute of Psychiatry at King's College London and wrote the book "The Art of Dying", it is possible to conclude that humanity still does not adequately and comprehensively assimilate the difference between mind and brain. For him, the term "terminal lucidity" is linked to an older concept called "transmission theory", coined at the end of the 19th century by the American psychologist and philosopher William James.
According to Fenwick, the brain would be like a television, but the mind is elsewhere, as part of universal consciousness. The brain picks up the signal from the mind but does not produce it. Television does not produce a program itself but shows it as if it were filtering external information.
And when the brain is not working properly, the signal is there but distorted. Just before dying, the brain stops distorting the signal and the mind emerges clearly. The problem in testing any of these hypotheses is the series of logistical, scientific, and ethical obstacles. An example is that these patients can no longer, by themselves, authorize participation in scientific studies. Another is that testing (invasive or not) people at this stage of life could affect their health or even prevent them from experiencing this significant moment with their loved ones.
If scientists can find solutions to these barriers, there are several possible paths, according to the US National Institute on Aging (NIA), which sponsors studies to understand lucid episodes in patients with advanced dementia, not necessarily just before death. . For this reason, the institute's specialists speak of "paradoxical lucidity" and not of "terminal lucidity."
There are studies with audio and video monitoring of these patients during these episodes or retrospective questionnaires with health professionals and relatives that collect data on their frequency, genetic factors, the content of conversations, use of medications, among others.
For Basil Eldadah, NIA Medical Supervisor, understanding this phenomenon can transform what is known about cognitive decline and dementia. “We can also broaden our understanding of consciousness and personality in people with dementia, which can affect the way we care for them. And better understanding paradoxical alertness could help caregivers deal with ethical and decision-making concerns that may arise after witnessing an episode of alertness, "suggests Eldadah.
Find a meaning
One of the main hypotheses put forward for the phenomenon is confirmation bias, which is the tendency to always look for more evidence to confirm our opinion.
For decades, studies on confirmation bias have shown that we are more likely to investigate, pay attention, and remember something that validates our beliefs. In this case, the confirmatory bias would have a strong affective component. “The fact that they are remarkable stories makes us overestimate their frequency in our memory and with that, we have the impression that this is something much more frequent than it really is. And maybe that's the explanation. Perhaps they are fortuitous events that we simply transform into events, ”says Dr. Fernandes, from the University of Sao Paulo.
Nahm, who coined the term "terminal lucidity," says that "confirmation bias may well be a factor" and "that is why it is so important to document occurrences of lucid reversion in the course of dementia." But he believes that "brain neurophysiology plays an important role" in this phenomenon and is not "just a case of confirmation bias."
Dr. Suelen Medeiros de Macedo, coordinator of the palliative care service at the Sírio Libanês hospital in Brasilia, disagrees. According to her, fluctuations in consciousness are part of the trajectory of patients with serious illnesses in an end-of-life context.
“There are days when the patient is better and other days when he is worse. And it may be that coincidentally, at random, there is some kind of improvement in the condition before dying, but without a cause and effect relationship to remember more patients who improve, but then die, than those who improve and do not die shortly after ”.
The palliative care segment is a multidisciplinary approach (physicians, psychologists, and nurses, for example) that cares for critically ill patients with a focus on the quality of life and symptom management. According to her, even in this sector, the number of cases of sudden improvement shortly before death is very small and, therefore, in her opinion, it is not possible to establish the cause and effect relationship of the phenomenon. But this does not detract from it.
On the contrary, Medeiros says that it is not for him as a doctor to invalidate spiritual beliefs or to try to explain the questions of relatives: "Did you get better to say goodbye?" or "Will he be discharged and will he be able to return home?" "When I come across a situation like this in which there are no technical explanations, what I try to do is understand what the family means and how that experience can even help to deal with that pain."
He says that for years he searched for technical explanations for experiences with patients at the end of life, but eventually realized that he did not need them. “I say we should enjoy ourselves. The patient is speaking. Say what you want to say, listen to what they have to say. Because this moment transforms life. It is almost a gift. If tomorrow death arrives or improves it, we will live tomorrow ”.
Remember the case of a patient who, shortly before dying, was very sleepy and barely responded to stimuli, as is often the case when death approaches. His family wanted very much that he could hold out until the arrival of two grandchildren and give them his blessing, as he did before he got sick. “When the grandchildren arrived, he surprisingly opened his eyes, sat down, and in a very low voice said a prayer for each grandchild. It was a sacred moment for the family. And his wife looked at me smiling as if to say 'This is what we need.' He died hours later.