The Inner Life of the Dying Person

Allan Kellehear

• Publisher: Columbia University Press
• Year: 2014
• eBook ISBN: 9780231536936
• Topic: Ciencias sociales
• Subtopic: Gerontología

This unique book recounts the experience of facing one's death solely from the dying person's point of view rather than from the perspective of caregivers, survivors, or rescuers. Such unmediated access challenges assumptions about the emotional and spiritual dimensions of dying, showing readers that—along with suffering, loss, anger, sadness, and fear—we can also feel courage, love, hope, reminiscence, transcendence, transformation, and even happiness as we die.

A work that is at once psychological, sociological, and philosophical, this book brings together testimonies of those dying from terminal illness, old age, sudden injury or trauma, acts of war, and the consequences of natural disasters and terrorism. It also includes statements from individuals who are on death row, in death camps, or planning suicide. Each form of dying addressed highlights an important set of emotions and narratives that often eclipses stereotypical renderings of dying and reflects the numerous contexts in which this journey can occur outside of hospitals, nursing homes, and hospices. Chapters focus on common emotional themes linked to dying, expanding and challenging them through first-person accounts and analyses of relevant academic and clinical literature in psycho-oncology, palliative care, gerontology, military history, anthropology, sociology, cultural and religious studies, poetry, and fiction. The result is an all-encompassing investigation into an experience that will eventually include us all and is more surprising and profound than anyone can imagine.

1

In the Beginning …

For dust thou art,

and into dust thou shalt return.

—Genesis 3:19

Dust n Old English dust (probably about 725 AD), cognate with Old High German tunst, meaning breath.

—Chambers Dictionary of Etymology

breath [A.S. breath] 1. The respired air. 2. An inspiration

—Stedman’s Medical Dictionary

Dying has a bad reputation. Most people imagine dying as The End. In this literal way many people conflate the two ideas, thinking of dying as death and not the life before it. Either way, dying and death are sad and bad. In other words, many people believe that nothing good can come of dying. But this is very much a cultural understanding—and a limited and narrow one at that. This perspective is not found in the rest of nature. As far as we can tell, trees and rabbits do not view the threat of death in these ways, yet they react to the threat of death in similar ways to us. To understand why a dying human being should have anything in common with a dying tree, we must start at the beginning of life and not at the end. We must start with an understanding of our own mortality that links our basic reactions to the threat of death to what we are made from—organic, cellular life. No holistic explanation of our inner reactions to the threat of death is possible without this biological and social context.

Furthermore, because most readers often imagine dying as awful, terrifying, and self-evidently life extinguishing, we need to reframe this view. This requires understanding how different dying and the threat of death are, depending on one’s perspective. The perspective of the participant is not that of the onlooker. The perspective of the dying animal and that of the predator have little overlap. In this way, for both animals and for human beings, dying has unique dimensions of perception and experience that are commonly obscured, even obfuscated, by onlooker attempts to describe it.

Becoming clear about our so-called natural reaction to death, and the role of different perspectives in understanding a personal response to death, is also key to understanding why our academic and clinical literature on death and dying contains so much confusion; why certain dark and pathological myths have risen to explain our experiences of dying—and both fill and terrorize the popular mind; and why the vast majority of people—certainly everyone outside biology and anthropology—think there is not, nor can there ever be, anything good to say about the human experience of dying. For all these different reasons we first need to look to the beginning of life and not at the end.

The Nature of Dying and Death

From the beginning of life itself—from the first unicellular organisms to the evolved complex animals—life has recognized and used dying and death as an integral part of its inner workings. Construction and destruction, living and dying, go hand in hand as seamless processes that require each other. To live cells need to destroy smaller chemicals and rearrange them for their survival. Larger animals need to destroy other organisms, usually plants, sometimes other animals, and rearrange their cellular material so that they can use them as an energy source and live on. The purpose of this process in the food chain is generally viewed as positive. After all, if you don’t eat, you don’t live.

However, few people spare a thought for the food—the living things that larger, stronger living things eat. Fortunately for us the biological sciences rarely share this blissful denial about dying, so we have a considerable amount of work that examines what organisms do when threatened with death. Most of that literature concerns how animals—bacteria, trees, bees, dolphins, or antelope—defend themselves. Most people understand that the main defense mechanisms center around fight-or-flight responses. Cells harden themselves, develop chemical forms of repelling their threat, later develop specific cells to deal with threat, and later still develop specific physical talents to deal with threat. Humans, at the top of the animal kingdom, even develop technologies and counterideas to deal with threat.

In multicell organisms the two-response fight-or-flight strategy to respond to threat continues to evolve into at least five or six responses. For four billion years we have been coming up with ideas about how to survive, breed, and raise our young. The biologist H. S. Bracha summarizes these as freeze, flight, fight, and then feign or fright.¹ Freezing is the act of not moving—a clever strategy that exploits the evolution of the visual cortex and retinas of many carnivores, which primarily detect movement rather than color. Hiding is also part of this initial response to the detection of a predator, as is fainting. Fainting has been protective even in humans as an adaptive behavior of many noncombatants—females, children, and young men. This leaves an aggressive predator to focus on slow, wounded, and otherwise still moving prey. Flight—running away—and fighting are the best-known responses to threat. Fright or feigning is a response most famously demonstrated by the possum—you act dead so as not to incite the predators to kill you straight away, and as soon as they loosen their grip, you make a crazy run for it.

It is important to remember that these defensive strategies for survival are not either/or responses but can be, and often are, used by all animals at different points of an attack and defense cycle. In fact, many animal watchers believe that these defensive maneuvers occur largely in sequence.² The feign/fright response, also commonly called the tonic immobility response—is commonly described as a terminal response—a last reaction when nothing else seems to be working. Each sequence of response is based on “the prey’s perceived decreasing distance to the predator.”³ In other words, if you are a long way from the predator, freezing or hiding is a good first response if the predator hasn’t noticed you. But if a nearby predator has spotted you, running makes a hell of a lot more sense. If you can’t outrun the predator, it makes more sense to at least try to fight it out. Finally, if you are clearly losing, pretending to be dead can slow up or stop the predator from tearing into you, perhaps just long enough for you to dash to safety. This last response is an ancient and useful reaction in the animal world, found in fish and insects as well as in mammals.⁴

These different and sequential tactics are used as defenses across the animal kingdom—in deer, whales, and primates, to mention three random examples.⁵ Thus the reaction to the threat of imminent death involves

1. More than fight or flight. Fighting is not the only way to defend—at least five or six defenses are available, and some don’t appear to be fighting responses, but that doesn’t make them less effective.

2. Different reactions, sorted by order or priority, depending on the perceived distance of the threat.

In the multicell animal world, just as in the single-cell animal world, predation is a primary selective force driving evolution, and much of an organism’s biology may represent adaptations to reduce the probability of detection and capture.⁶ These range from the complex internal stress response, such as the commonly described cascade of neurotransmitters, hormones, peptides, and cytokines in the blood stream that warn all cells and tissues of the presence of a threat, to the more obvious: inherited colors, running and jumping abilities, hard-shelled and spiny skins, or appalling smells, and surprising behaviors that protect animals and give them their distinctive shape and special presence in the world.⁷

Admiring a desert cactus is difficult without also understanding how the many spines on these plants have evolved to both protect them from being eaten and to help capture the precious little moisture in the desert landscape. Admiring the speed of deer or dolphin is difficult without also appreciating how such sleek maneuvers and shapes have evolved to evade predators in an environment full of carnivorous competitors. Thus fear and the various defensive strategies that we use to counter the threat of death have not only purpose but positive purpose for dying organisms. Fear helps alert an animal to danger. Then fear assists in mobilizing strategies that either save its life, prolong its life, enhance its abilities, or spare the animal from being overwhelmed by terror at the point of death. Fear and defense are positive experiences for organisms threatened by death. Dying and death also play positive and purposeful roles for living in another way.

Cells (like human individuals and groups) will commit suicide for the greater good.⁸ There are a lot of examples. Snakeskin, cocoon casings, and autumn leaves are just three of the most obvious organic examples of what is called programmed cell death (PCD).⁹ PCD is a way that organisms actually use dying and death as a purposive tool for enhancing an organism’s life. Programmed cell death was first observed in amphibians, then insects, and then all life forms. PCD helps sculpt structures (such as the little holes and serrations in leaves), deletes unneeded structures (such as leaves in the dead of winter), controls cell numbers (to make way for fresh energy-producing incumbents), and eliminates abnormal, misplaced, or harmful mistakes (such as cancer cells). Any attempt to stop PCD will is likely to lead to major deformities—or worse—for any animal.¹⁰

At this point in our discussion we can draw two conclusions from the defensive reactions of animals to the threat of death and from the way that cells use dying and death to enhance their lives. First the biology behind experiences of dying and death usually reveals that all living things have a positive purpose. If we move from a predator’s point of view and examine how prey defend, we can easily see the life-enhancing reactions within the responses of prey. Dying, up close and personal, displays and embraces a vast array of self-preserving and self-enhancing processes and experiences for the threatened animal. Second, organisms also commonly use dying and death in cellular processes to enhance their life—by being part of self-building and self-designing projects, and in affirming and enhancing their other life functions. But if these positive purposes are so pronounced, so obvious in the biological and social life of small organisms and big animals, and have been around since the beginning of life itself, why is the examination of the dying experience so silent about them in observations of human beings?

Perspective Is Everything

When we look at the emotional picture of dying months before death actually occurs, we often get quite a different impression than when we look at the same situation some minutes before death occurs (“different reactions are sorted by order or by priority depending on the perceived distance of the threat”). In this way we sometimes conflate an onlooker’s view of dying (quite distant from the dying) and the dying person’s view of dying (near-to-imminent death).

For example, imagine a man who is being attacked by an escaped tiger at the zoo you are visiting. Imagine the horror of seeing that man tossed about in the jaws of the attacking tiger. Imagine your fear—for your own safety and those who happen to be with you. I will wager you cannot avoid imagining the terror that the victim himself must surely be experiencing. Now read how David Livingstone, who survived the ordeal to write about it, experienced being attacked by a tiger:

Growling horribly close to my ear, he shook me as a terrier does a rat. The shock produced a stupor similar to that which seems to be felt by a mouse after the first shake of the cat. It caused a sort of dreaminess, in which there was no sense of pain nor feeling of terror, though [I was] quite conscious of all that was happening. It was like what patients partially under the influence of chloroform describe who see all the operation but do not feel the knife. This singular condition was not the result of the mental process. The shake annihilated the fear, allowed no sense of horror in looking round the beast. This peculiar state is probably produced in all animals killed by the carnivore; and if so, is a merciful provision by our benevolent Creator for lessening the pain of death.¹¹

Raymond Moody, a physician who wrote one of the first modern books on the near-death experience, quotes a man who recollected his experience of a severe head injury. The man’s vital signs were apparently undetectable at the time, but the man himself describes something quite transforming and counterintuitive to an observer. “At the point of injury there was a momentary flash of pain, but then all the pain vanished. I had the feeling of floating in a dark space. The day was bitterly cold, yet while I was in that blackness all I felt was warmth and the most extreme comfort I have ever experienced. … I remember thinking, ‘I must be dead.’”¹²

The feign/fright or tonic immobility response is clearly dominating the responses of both men, who are—at least from their bodies’ physiological point of view—clearly in the grip of a serious, close-up, life-threatening situation. No chance to run in these cases, say their bodies, so let’s try faking it—and their physiological mechanisms kick in, whereas Livingstone’s companions started firing bullets at his attacker and in Moody’s case study the bystanders began frantic efforts to resuscitate the man who suffered the severe head injury. Either way the fight has begun on both sides—the observers who are fearful, even panic stricken, and the considerably less anxious victim of the mauling or accident.

Hundreds of cases like the one I have just described exist in the animal and human worlds.¹³ Single cell or multicell, dolphin, ape, or human, the body will gear up to save us however it can. However, what makes human beings the most complicated creatures on Earth is that we don’t have to wait for an attack or a close threat of death to react to it. Unlike animals and plants, we anticipate death, which means that the number and complexity of potential responses are themselves something of a modern biological and cultural miracle (“fighting is not the only way to defend”).

Most writings about dying take the onlooker’s perspective. This is the literature we often see from the health-care professions. Some writers do not have even this kind of experience, and their texts are the product of mere speculation about dying, with little or no experience of the process. Many people, for example, have little or no experience of seeing others die and hope that they will live a long life and die quickly at the end. A popular fantasy might be that they will die in their sleep at the age of ninety-seven. Most people do not want a dying that entails conscious experience, even for a few hours. They want their own dying to occur in a dash, preferably when they are ready for it. Or, as Jean-Dominique Bauby so eloquently put it:

The kangaroo escaped the zoo.

“Goodbye zoo!” cried Kan...

Table of contents

• Cover 
• Series Page
• Title Page
• Copyright
• Epigraph
• Contents 
• Preface
• Acknowledgments
• 1. In the Beginning …
• 2. Suffering—Enduring the New Reality
• 3. Fear—A Threat Observed
• 4. Courage—Facing the Overwhelming
• 5. Resistance—Facing the Choices
• 6. Sadness and Anger—Facing Loss
• 7. Hope and Love—Connection
• 8. Waiting—In-between-ness
• 9. Review and Reminiscence—Remembering
• 10. Aloneness—Disconnection
• 11. Transformation—Change, Change, Change
• 12. Some Final Reflections
• Notes
• Bibliography
• Index