This was a really eye opening book. I feel like I learned SO much from reading this and it really made me think about my own life. This was really well researched and presented in a really easy to consume way and not much went over my head which these books tend to do. Overall I thought it was well paced and well presented. Thank you to NetGalley and the publisher for this ARC in exchange for an honest review.

This is a deep dive and fascinating read about things that have been proven with science and things that have not. A thin line that we walk between life and death, lucid or not. Anyone can pick up this book and learn something new!

Terminal lucidity is not a phenomenon that I was familiar with before reading this book. This book is fascinating and provides an interesting look at the moments preceding death, when even patients in late stage dementia demonstrated moments of extreme clarity and awareness.

And cue the existential crisis coming a day before my birthday… This was a really interesting topic to cover. I’ve known of this happening in those close to death for a while now and experienced with my grandma, but I’ve never really known the history or layers behind it. I thought this did a really great job of humanizing the possible science going on. It did get a bit too clinical at times, but mostly it was really engaging. Definitely want to read more about TL as the research continues to grow.

Terminal Lucidity: An episode of unexpected, spontaneous, meaningful, and relevant communication or connectedness in a patient who is assumed to have permanently lost the capacity for coherent verbal or behavioral interaction due to a progressive and pathophysiologic dementing process.

“Everything is biological.”
—Francis Crick, 1962 Nobel Prize laureate in Physiology or Medicine

“I think we simply have to acknowledge that there is a mystery, transcending any biological or materialist rationale, inherent to our existence.”
—Sir John C. Eccles, 1963 Nobel Prize laureate in Physiology or Medicine

Alexander Batthyány, PhD holds the Endowed Viktor Frankl Chair of Philosophy and Psychology at the International Academy of Philosophy in the Principality of Liechtenstein. He also directs a research institute in Budapest and teaches psychological and cognitive science theory at the University of Vienna. Batthyány is interested in existential issues within the fields of psychology and psychiatry—death and dying, in particular. In recent years, he has amassed a significant database of reports on a condition which has come to be known as “terminal lucidity” (TL) in which individuals close to death and severely cognitively impaired by dementia, strokes, or other neurodegenerative diseases demonstrate an “unexpected return of clarity, self-awareness, memory, and lucid functioning.” In some cases, the person comes back after years of “being lost.”

Batthyány presents both historical and contemporary accounts of people who had forgotten all or most details of their lives. They did not appear to recognize their loved ones and sometimes did not even know their own names. Then suddenly, briefly, and mysteriously, they became lucid, recovered their memories, engaged with family, and died very shortly after. Most (but not all) family members who witness such episodes regard them as beautiful gifts, which reassure them “that there is something about our personhood—our core self—that is whole, safe, sheltered, sound, and protected in the face of illness and frailty, even in the face of death.”

Batthyány describes some of the research he and his team have undertaken around this medical mystery. To get a sense of how common the phenomenon was, they began by sending a web-based pilot survey/questionnaire to hospices, palliative care units, and nursing homes in German-speaking countries. This was followed by a more structured inquiry sent to randomly selected hospitals, hospices, nursing homes, and online forums worldwide. The team then pored over returned reports— most of them filed by family members, not medical professionals—looking for patterns in demographics, duration of TL episodes, and the time of death, among other things. Patients were divided into four categories according to the coherence and awareness exhibited during the episode. The largest group (close to 80%) experienced a full recovery of memories and verbal skills during an event that typically lasted from ten minutes to a few hours. Ages of patients ranged from eight to 100, but not surprisingly the majority of cases involved people 65 years of age and older, who’d been diagnosed with dementia. Around a quarter of witnesses reported that subjects demonstrated increased energy during the lucid period. Some were said to look ten to fifteen years younger.

A smaller category of patients seemed less verbally coherent. These people were observed speaking to people only they could see: absent or dead family members. The patients stated that they’d soon be leaving; the visitors had come for them. Batthyány points out that this type of episode is not unique to those dying from dementia or other severe neurological disorders. British neurophysiologist Peter Fenwick and his research group have studied and reported on the visitation experiences of people dying of other causes.

Batthyány’s is the first book in English on terminal lucidity. The author brings a humanist rather than a medical or biological perspective to the subject. Early in the book, he engages with questions about our essential nature, contrasting scientific/materialist views of the individual with traditional religious view of the core self as “something indestructible, meaningful, eternal and true beyond illness and possibly even beyond death.” It’s not surprising that he should note this tension, given the subject matter. Severe neurological disease is known to irreparably damage the brain and eventually erase the personality; yet here we have this mysterious phenomenon where the self reappears, albeit briefly. If one’s personhood is dependent on a healthy, functioning brain, how is it that the old self can return when the individual’s gray matter is in ruins? The author intimates that he wants readers to at least be open to more than materialist explanations for this phenomenon.

For the last 200 years, writes Batthyány, religion has been in steady decline and science in the ascendant. While readily acknowledging “the vast repository of scientific research that shows each feeling, emotion, thought, and choice is accompanied by a corresponding brain event,” he seems to be troubled that our inner lives and the idea of the soul are explained away as brain activity alone. Feelings and thoughts, “mind and self—even our longing for meaning and love and compassion” are regarded as mere “products and functions of the brain.” Sadness and grief are no longer a response to life events; they’ve become depression, a condition of “chemical imbalances” or physiological perturbations. Something has been lost in the process. Batthyány reflects that materialism has made it more challenging for man to understand himself, honestly and openly confront his own death, and be present for those who are dying. Terminal lucidity raises questions about the self and meaning. Is it possible that something within us endures in spite of illness? Batthyány recommends caution when it comes to drawing conclusions based on witness reports alone, however. Response bias (participants not answering accurately or truthfully for some reason), error-prone memory, and a natural tendency to embellish stories can colour personal accounts. Prospective longitudinal studies need to be performed on select groups of people.

Drawing on the work and thought of Bruce Greyson, Professor Emeritus of Psychiatry and Neurobehavioral Sciences at the University of Virginia, Batthyány entertains the possibility that in extreme states—when a person is close to death or actually dying—the mind may function independently of the brain. He suggests that physics rather than physiology may ultimately explain this, but refrains from describing the theoretical basis for his thinking, stating that it is “too complex” to go into. While the concept of mind-body duality is now out of fashion, the author points out that it was never completely dismissed by some scientists and is being resurrected by others, including a physicist friend of his.

Batthyány’s book is thought-provoking and wide-ranging, but it’s ultimately a speculative, tentative and somewhat impressionistic work, which mainly serves as an introduction to a new area of study. It was only in 2018, after all, that the author and eight other investigators from a variety of disciplines met at the National Institute on Aging in Bethesda, Maryland to hammer out a definition of terminal lucidity and to consider research strategies for a phenomenon with revolutionary implications. Studying these lucid episodes could potentially lead to treatments for seemingly irreparable brains. The group recognized at the outset that their work could touch on many aspects of being and remaining human “even in the face of a debilitating neurological disorder.”

I admit to being disappointed that the author didn’t at least mention some of the medical hypotheses about what might be going on. A recent (June 2023) article in Scientific American gives an overview of new research that “shows surprising activity levels in dying brains and may help explain the sudden clarity many people with dementia experience near death.” It presents the views of a number of medical doctors and researchers, among them: Sam Parnia, Christopher Kerr, Andrew Peterson, and Jimo Borjigin. To end, it seems apt to quote University of Pennsylvania geriatrician and medical ethicist Jason Karlawish, whose observations about those with dementia resonate with Batthyány’s: Rather than assuming their consciousness has been irrevocably changed, “we should still pay close attention to their mind because some aspects are still there, though they may be quite damaged.”

Rating: a solid 3.5, rounded up

This is beautiful and well researched. When I did hospice I saw this a few times myself. People "rally" a day or two before they pass on. They can suddenly walk, remember people, and wrap up some loose ends. We knew to watch for it and prepare the family for the end. Usually after they rally they start talking to people who passed on before. It is beautiful and not well studied.
If you want some faith or something to make death seem more "acceptable" for yourself, this book is a good way to start.
I will likely buy a copy.

Thank you for the ARC.