The hallucinatory thoughts of the dying mind

When William Brahms’s anthology of last words, “Last Words of Notable People,” came out in 2010, he encountered readers who entertained themselves by speculating what their last words might be. Initially, Brahms said, they would propose something witty and profound. Later, they admitted that they’d likely express appreciation and love, or something spiritual — if they could even manage to speak, when lucidity and intelligibility become hurdles. Brahms witnessed this firsthand at the bedside of his dying mother. Even though she’d spent years helping him edit his book, they’d never discussed what they thought their last words would be.

It didn’t matter, because the reality was quite different.

“In her case, due to debilitating illness, it was not a clear punctuated statement,” Brahms told me in an email, with evident surprise. “It was more of a slow and fading dialogue.”

This dissonance between the idealized notion of dying speech, based on people’s expectations and cultural ideals, and the reality of final moments so often complicates our understanding of death. And when delirium enters the equation, the gap between expectation and reality widens even further.

What should we make of people who can speak and yet make no sense?

On one hand, there’s a very good chance that a dying person will be delirious at the end of life. In fact, in palliative care and hospice spaces, 58 to 88 percent of cancer patients are delirious in the last week to hours before death. In William Osler’s landmark study of dying, 28 patients out of the total 486 were described as delirious, with his observers using words like “irrational,” “mind wandering,” “demented,” and in one case “raging.”

“I don’t want to call it a nearly universal feature of the end-of-life experience,” David Wright, a Canadian medical ethnographer, told me, “but as you die, unless you die very suddenly in an instant, your various bodily systems start to work differently until they stop working at all. And that includes the way that you think, and that includes the way that you communicate.”

Ancient medical writers distinguished between two types of delirium: phrenitis, the restless variety, and lethargus, an inert, dull state. Modern researchers keep this distinction, describing delirium as either quiet, listless, apathetic, and “pseudo wakeful,” or as a restlessness in which patients are “muttering” and “talkative.” Delirium was one of the first medical conditions ever described by Greek and Roman writers almost 2,000 years ago. The Greek philosopher Celsus introduced the word delirium in the second century CE; the word came from the Latin delirare, which means to go out of the furrow (lira is Latin for “furrow”). The delirious plow leaves the furrow of sense. A modern person might think that leaving the planned track is a desirable thing, until they familiarize themselves with a single-bladed plow and realize the inconvenience of an errant ox-pulled plow skittering across the field’s surface.

Despite this pedigree, the exact biological mechanisms behind delirium aren’t well understood, but it appears to stem from neuronal dysfunction, probably due to neurotransmitter fluctuations. Neurons in the brain aren’t dying (which is why sometimes people can recover from delirium) but disconnecting from each other. Basically, delirium is the result of a neurochemical commotion. Now clinicians look for three types of delirium: a restless, hyperactive form, a listless form, and a mix of the two.

Delirium is very common among the dying, particularly in the later stages, where that lethargic type shows up often. As a diagnosis, it covers a complex of symptoms and isn’t a single thing. Despite its prevalence, doctors don’t reliably recognize delirium. It’s often mistaken for dementia, depression, or psychosis. In a study of 100 consecutive cases of delirium in a palliative care unit, researchers found that 33 percent of patients were classified with the hypoactive, lethargic form. They had the same impairment in cognitive functioning as patients with other variants, showing similar deficits in orientation, memory, and comprehension on cognitive test scores. This variegated presentation makes it hard to tell when someone is delirious. Though clinicians want to take it seriously, they don’t have a uniform method for recognizing delirium or dealing with it therapeutically.

On the other hand, delirium seems to outstrip people’s ability — and their willingness — to grasp a phenomenon as simultaneously biological, emotional, and social. It has what David Wright called a relational dimension, in the sense that any individual’s delirium impacts other people’s perceptions of the relationship. Some find it traumatizing and distressing, others less so. In either case, what seems to help is when delirium is described as a normal part of dying, in the same way that baby babbling is described as a normal feature of language acquisition. Some medical staff try to normalize the delirium as part of the natural process of dying, and they encourage family members to enter the hallucinatory world — or at least not to fight it. Many hospices recommend the latter as well: “Do not contradict, explain away, belittle or argue about what the person claims to have seen or heard,” reads a short text that a hospice provides about the dying process. “Just because you cannot see or hear it does not mean it is not real to your loved one. Affirm his or her experience. They are normal and common.”

By itself, the brain explanation isn’t soothing. What does help is taking advantage of the interaction window that remains. Or you open another window, as if that’s the one that the other person wants to operate with. You might respond, “So you say you’re going on a trip. Who do you think will be waiting for you?” Or, “Tell me some nice things you remember about your mother.” Family members might be told that the patient has already undergone a sort of social death; though their body is present, the previous person they is gone, so a new relationship is required. So while your father’s brain is the author of some insult, and his body its animator, your father as you knew him isn’t the principal of that offensive utterance.

Some families take it better than others — some want to deny what’s happening, while others roll with it (“Oh, you’re seeing bugs? What’s it look like?”). For other family members, some meaning needs to be made from the delirium. “It can be very meaningful for family members to say, ‘Oh, Dad’s now with Mom,’ who is dead. That can be a great source of comfort,” a doctor who often treats delirium told me.

I faced this with my own grandmother. I’d known my father’s mother, Norma, from childhood. A bright-faced, cheery woman, she’d fold me in her arms, say that she loved me, then laugh chirpingly and say that she prayed for me, that unmistakable Irish grandmother code for “I want you to go to Mass.” Now I was no longer a child, and now she was dying. The gray skies on our visit to the hospital will be forever seared in my memory. When my wife and I entered my grandmother’s room, I told her who I was. Her eyelids fluttered open, and her eyes focused on me, her gaunt face lit up, she reached out her arms, I hugged and kissed her. “Michael-Jean, you’re an angel!” she exclaimed. “You’re an angel!”

At first I was concerned — does she know it’s me, not an angel? Apparently so, she said my name, then repeated joyfully, “You’re an angel, you’re an angel.” Delirium? Maybe. But when your beloved grandmother calls you an angel, you reach for the interpretation that feels most loving. That has to be her talking, she’s still there. She said what she said; the words, they’re right there, her last ones, as far as I’m concerned. She became unresponsive shortly after and died two days later.

My father remembers this differently. He maintains that she roused to a saying of the Lord’s Prayer. But I won’t argue — from both of our stories, we end up with some morsels of closure, and that’s what feeds us.

From a linguistic perspective, delirious language is unhinged and incoherent. People who are delirious after surgery and then recover can sometimes relate their feelings of being briefly outside the furrow of sense, which reduced them to a state of abject terror.

Osler might have been surprised. “I remember that everything changed to me,” reported one patient. “Suddenly I was a prisoner in a Nazi camp, and I thought that the nurses were the Nazi camp guards . . . and I wondered whatever happened since the nurses had become so unkind to me although they were so nice before.” They reported seeing things that were beautiful, awe-inspiring, and pleasurable. They saw fragments of past events mixed up with the present. And they heard people talking to them but didn’t know what they wanted, nor could they communicate with them.

As with all these phenomena, delirium involves experiences at the edge of the interaction window, or far beyond it. In many instances, that window has been shut, perhaps not forever. In the case above, family members who knew the person in a “normal” state were also shocked at losing emotional and cognitive access to their loved one. They missed knowing about the other person’s interior life and struggled to figure out if the person with delirium was comfortable or distressed. To deal with this, the advice seems to be: Don’t engage in the main interaction window, because your loved one’s not there; instead, open another interaction window on their terms. That will allow you to be present without expectations or demands.

Of course, another option is to deny the existence of delirium altogether, as Maggie Callanan and Patricia Kelley’s 1992 book “Final Gifts” does. Their book proposed that dying people begin using a symbolic language particular to the end of life that must be carefully listened to, written down, and interpreted. “Health-care professionals and families may assume that what they’re hearing and seeing is confusion…unfortunately, dying people are often labeled ‘confused’ without adequate assessment,” Callanan and Kelley wrote. To those authors, the only reality is the special symbolic language of the dying, and the brain-based understandings of delirium diminish those messages or their meanings. (They don’t have a monopoly on this, by the way. Nearly 40 percent of Indian family members said that delirium was the cause of supernatural beliefs, emotional stress, or a failure of religious observance — and did not have biomedical origins.)

Given the documented prevalence of delirium, it was a bold position to take. However, in a 1998 interview, Callanan walked the rejection back. “I’m not here to say that everything a confused patient says has great significance. It’s often very hard, even paying close attention, to find exactly what the person is saying. Seventy percent of people dying of illness, at some point, have some confusion; that’s a lot of confusion. However, our point is to always listen specifically to the words.”

Several years later, on a speaking tour to Chicago, Callanan reversed again, telling the Chicago Tribune that delirious behaviors aren’t the product of mental confusion or drug mis-dosing. “The confusion is ours,” she said. “The patient knows what’s going on.”

The newspaper reporter also quoted, in contrast, the views of Joel Frader, a palliative care physician, who identified the source of hallucinations and other unusual behaviors as the failing brain. “There are some fairly characteristic changes in brain chemistry that people have documented as death occurs, whether it’s lack of oxygen or high levels of carbon dioxide or changes in nutrition getting to the brain,” he told the newspaper.

His take was not only frank and sharp, but it reiterated what Victorian doctors also warned: The existence of God or the afterlife won’t be proven with people’s dying words or their hallucinations, because they are “matters of faith.” The organic response of the brain to the body’s failure, on the other hand, is a matter of physiology. Implicit is the idea it works that way for everybody.

“I do understand people trying to get some meaning out of everything they witness, but delirium is real, and it happens a lot,” Romayne Gallagher, a palliative care physician in British Columbia told me. She didn’t recommend “Final Gifts” to people because of its unrealistic view of delirium. “Certainly the misperception of reality plays a role in delirium — people seeing ants on the ceiling (spotted ceiling tiles) and seeing a bowl of rice (a glowing white lamp globe) — but if delirium goes beyond that, it seems to empty the limbic system’s treasure trove of horrors, which doesn’t seem to relate to the person’s experience. By that I mean people seeing a train coming at them or seeing a loved one on fire just outside the window.”

My speculation is that the interpretive control promoted in “Final Gifts” reflects a cultural adaptation to dilemmas posed by delirium to a laissez parler approach to language at the end of life. That is, if no one gets a clear model about the language they should produce at the end, except for the vague sense that it should be pithy, poignant, and uniquely reflective of who they were, then it risks ending up delirious and nonsensical (if it exists at all). And if loved ones are directed to attend to all of the utterances, how should the non-sensical ones be interpreted? As if they contain some meaning.

Meanwhile, other religious practices keep dying people occupied, authoring for them what to utter, chant, or pray. Sharing linguistic agency in this way looks like a wise cultural adaptation to the prevalence of delirium. In those traditions, only the prescribed words matter — everything else becomes noise, harmless and inconsequential.

This article was originally published on MIT Press Reader.