chapter 19 Death, Dying, and Bereavement

chapter 19 Death, Dying, and Bereavement

image1

Mourners on the island of Bali, Indonesia, perform a traditional Hindu ceremony marking the passage of the dead into the spirit realm. All cultures have rituals for celebrating the end of life and helping the bereaved cope with profound loss.

chapter outline

· How We Die

· Physical Changes

· Defining Death

· Death with Dignity

· Understanding of and Attitudes Toward Death

· Childhood

· Adolescence

· Adulthood

· Death Anxiety

· Thinking and Emotions of Dying People

· Do Stages of Dying Exist?

· Contextual Influences on Adaptations to Dying

· A Place to Die

· Home

· Hospital

· Nursing Home

· The Hospice Approach

· ■ BIOLOGY AND ENVIRONMENT Music as Palliative Care for Dying Patients

· The Right to Die

· Passive Euthanasia

· Voluntary Active Euthanasia

· Assisted Suicide

· ■ SOCIAL ISSUES: HEALTH Voluntary Active Euthanasia: Lessons from Australia and the Netherlands

· Bereavement: Coping with the Death of a Loved One

· Grief Process

· Personal and Situational Variations

· Bereavement Interventions

· ■ CULTURAL INFLUENCES Cultural Variations in Mourning Behavior

· Death Education

image2

As every life is unique, so each death is unique. The final forces of the human spirit separate themselves from the body in manifold ways.

My mother Sofie’s death was the culmination of a five-year battle against cancer. In her last months, the disease invaded organs throughout her body, attacking the lungs in its final fury. She withered slowly, with the mixed blessing of time to prepare against certain knowledge that death was just around the corner. My father, Philip, lived another 18 years. At age 80, he was outwardly healthy, active, and about to depart on a long-awaited vacation when a heart attack snuffed out his life suddenly, without time for last words or deathbed reconciliations.

image3

As I set to work on this chapter, my 65-year-old neighbor Nicholas gambled for a higher quality of life. To be eligible for a kidney transplant, he elected bypass surgery to strengthen his heart. Doctors warned that his body might not withstand the operation. But Nicholas knew that without taking a chance, he would live only a few years, in debilitated condition. Shortly after the surgery, infection set in, traveling throughout his system and so weakening him that only extreme measures—a respirator to sustain breathing and powerful drugs to elevate his fading blood pressure—could keep him alive.

“Come on, Dad, you can do it,” encouraged Nicholas’s daughter Sasha, standing by his bedside and stroking his hand. But Nicholas could not. After two months in intensive care, he experienced brain seizures and slipped into a coma. Three doctors met with his wife, Giselle, to tell her there was no hope. She asked them to disconnect the respirator, and within half an hour Nicholas drifted away.

Death is essential for the survival of our species. We die so that our own children and the children of others may live. When it comes to this fate, nature treats humankind, with all its unique capabilities, just as it treats every other living creature. As hard as it is to accept the reality that we too will die, our greatest solace lies in knowing that death is part of ongoing life.

In this chapter, we address the culmination of lifespan development. Over the past century, technology has provided so many means to keep death at bay that many people regard it as a forbidden topic. But pressing social and economic dilemmas that are an outgrowth of the dramatic increase in life expectancy are forcing us to attend to life’s end—its quality, its timing, and ways to help people adjust to their own and others’ final leave taking. The interdisciplinary field of thanatology , devoted to the study of death and dying, has expanded tremendously over the past 25 years.

Our discussion addresses the physical changes of dying; understanding of and attitudes toward death in childhood, adolescence, and adulthood; the thoughts and feelings of people as they stand face to face with death; where people die; hopelessly ill patients’ right to die; and coping with the death of a loved one. The experiences of Sofie, Philip, Nicholas, their families, and others illustrate how each person’s life history joins with social and cultural contexts to shape death and dying, lending great diversity to this universal experience.

image4 How We Die

In industrialized countries, opportunities to witness the physical aspects of death are less available today than in previous generations. Most people in the developed world die in hospitals, where doctors and nurses, not loved ones, typically attend their last moments. Nevertheless, many want to know how we die, either to anticipate their own end or grasp what is happening to a dying loved one. As we look briefly at the physical dying, we must keep in mind that the dying person is more than a physical being requiring care of and attention to bodily functions. The dying are also mind and spirit—for whom the end of life is still life. They benefit profoundly in their last days and hours from social support responsive to their needs for emotional and spiritual closure.

Physical Changes

My father’s fatal heart attack came suddenly during the night. When I heard the news, I longed for reassurance that his death had been swift and without suffering.

When asked how they would like to die, most people say they want “death with dignity”—either a quick, agony-free end during sleep or a clear-minded final few moments in which they can say farewell and review their lives. In reality, death is the culmination of a straightforward biological process. For about 20 percent of people, it is gentle—especially when narcotic drugs ease pain and mask the destructive events taking place (Nuland, 1993 ). But most of the time it is not.

Recall that unintentional injuries are the leading cause of death in childhood and adolescence, cardiovascular disease and cancer in adulthood. Of the one-quarter of deaths in industrialized nations that are sudden, 80 to 90 percent are due to heart attacks (American Heart Association, 2012 ; Winslow, Mehta, & Fuster, 2005 ). My yearning for a painless death for my father was probably not fulfilled. Undoubtedly he felt the sharp, crushing sensation of a heart deprived of oxygen. As his heart twitched uncontrollably (called fibrillation) or stopped entirely, blood circulation slowed and ceased, and he was thrust into unconsciousness. A brain starved of oxygen for more than two to four minutes is irreversibly damaged—an outcome indicated by the pupils of the eyes becoming unresponsive to light and widening into large, black circles. Other oxygen-deprived organs stop functioning as well.

Death is long and drawn out for three-fourths of people—many more than in times past, as a result of life-saving medical technology. They succumb in different ways. Of those with heart disease, most have congestive heart failure, the cause of Nicholas’s death (Gruenewald & White, 2006 ). His scarred heart could no longer contract with the force needed to deliver enough oxygen to his tissues. As it tried harder, its muscle weakened further. Without sufficient blood pressure, fluid backed up in Nicholas’s lungs. This hampered his breathing and created ideal conditions for inhaled bacteria to multiply, enter the bloodstream, and run rampant in his system, leading many organs to fail.

Cancer also chooses diverse paths to inflict its damage. When it metastasizes, bits of tumor travel through the bloodstream and implant and grow in vital organs, disrupting their functioning. Medication made my mother’s final days as comfortable as possible, granting a relatively easy death. But the preceding weeks involved physical suffering, including impaired breathing and digestion and turning and twisting to find a comfortable position in bed.

In the days or hours before death, activity declines; the person moves and communicates less and shows little interest in food, water, and surroundings. At the same time, body temperature, blood pressure, and circulation to the limbs fall, so the hands and feet feel cool and skin color changes to a duller, grayish hue (Hospice Foundation of America, 2005 ). When the transition from life to death is imminent, the person often moves through three phases:

· 1. The agonal phase . The Greek word agon means “struggle.” Here agonal refers to gasps and muscle spasms during the first moments in which the regular heartbeat disintegrates (Manole & Hickey, 2006 ).

· 2. Clinical death . A short interval follows in which heartbeat, circulation, breathing, and brain functioning stop, but resuscitation is still possible.

· 3. Mortality . The individual passes into permanent death. Within a few hours, the newly lifeless being appears shrunken, not at all like the person he or she was when alive.

Defining Death

TAKE A MOMENT… Consider what we have said so far, and note the dilemma of identifying just when death occurs. Death is not an event that happens at a single point in time but, rather, a process in which organs stop functioning in a sequence that varies from person to person. Because the dividing line between life and death is fuzzy, societies need a definition of death to help doctors decide when life-saving measures should be terminated, to signal survivors that they must begin to grieve their loss and reorganize their lives, and to establish when donated organs can be removed.

image5

A monk prays with mourners during a Shinto funeral in Japan. Shinto beliefs, emphasizing ancestor worship and time for the spirit to leave the corpse, may partly explain the Japanese discomfort with the brain death standard and organ donation.

Several decades ago, loss of heartbeat and respiration signified death. But these criteria are no longer adequate because resuscitation techniques frequently permit vital signs to be restored. Today, brain death , irreversible cessation of all activity in the brain and the brain stem (which controls reflexes), is used in most industrialized nations.

But not all countries accept this standard. In Japan, for example, doctors rely on traditional criteria—absence of heartbeat and respiration. This approach has hindered the development of a national organ transplant program because few organs can be salvaged from bodies without artificially maintaining vital signs. Buddhist, Confucian, and Shinto beliefs about death, which stress ancestor worship and time for the spirit to leave the corpse, may be partly responsible for the Japanese discomfort with brain death and organ donation. Today, Japanese law allows organ donation using the standard of brain death, even if the wishes of the deceased are not clear, as long as the family does not object (Ida, 2010 ). Otherwise, people are considered to be alive until the heart stops beating.

Often the brain death standard does not solve the problem of when to halt treatment. Consider Nicholas, who, though not brain dead, had entered a persistent vegetative state , in which the cerebral cortex no longer registered electrical activity but the brain stem remained active. Doctors were certain they could not restore consciousness or body movement. Because thousands of people in the United States and other nations are in a persistent vegetative state, with health-care costs totaling many millions of dollars annually, some experts believe that absence of activity in the cerebral cortex should be sufficient to declare a person dead. But others point to a few cases in which patients who had been vegetative for months regained cortical responsiveness and consciousness, though usually with very limited functioning (Laureys & Boly, 2007 ). In still other instances of illness, a fully conscious but suffering person refuses life-saving measures—an issue we will consider later when we take up the right to die.

Death with Dignity

We have seen that nature rarely delivers the idealized, easy end most people want, nor can medical science guarantee it. Therefore, the greatest dignity in death is in the integrity of the life that precedes it—an integrity we can foster by the way we communicate with and care for the dying person.

First, we can assure the majority of dying people, who succumb gradually, that we will support them through their physical and psychological distress. We can treat them with respect by taking interest in those aspects of their lives that they most value and by addressing their greatest concerns (Keegan & Drick, 2011 ). And we can do everything possible to ensure the utmost compassionate care through their last months, weeks, and even final hours—restful physical surroundings, soothing emotional and social support, closeness of loved ones, and pastoral care that helps relieve worries about the worth of one’s life, important relationships, and mortality.

Second, we can be candid about death’s certainty. Unless people are aware that they are dying and understand (as far as possible) the likely circumstances of their death, they cannot plan for end-of-life care and decision making and share the sentiments that bring closure to relationships they hold most dear. Because Sofie knew how and when her death would probably take place, she chose a time when she and Philip could express what their lives had meant to each other. Among those precious bedside exchanges was Sofie’s last wish that Philip remarry after her death so he would not live out his final years alone. Openness about impending death granted Sofie a final generative act, helped her let go of the person closest to her, and offered comfort as she faced death.

image6

Dying patient Dick Warner’s wife, Nancy, wears a nurse’s hat she crafted from paper to symbolize her dual roles as medical and emotional caregiver. The evening of this photo, Nancy heard Dick’s breaths shortening. She kissed him and whispered, “It’s time to let go.” Dick died as he wished, with his loving wife at his bedside.

Finally, doctors and nurses can help dying people learn enough about their condition to make reasoned choices about whether to fight on or say no to further treatment. An understanding of how the normal body works simplifies comprehension of how disease affects it—education that can begin as early as the childhood years.

In sum, when the conditions of illness do not permit an easy death, we can still ensure the most dignified exit possible by offering the dying person care, affection, companionship, and esteem; the truth about diagnosis; and the maximum personal control over this final phase of life (American Hospice Foundation, 2013 ). These are essential ingredients of a “good death,” and we will revisit them throughout this chapter.

image7 Understanding of and Attitudes Toward Death

A century ago, when most deaths occurred at home, people of all ages, including children, helped with care of the dying family member and were present at the moment of death. They saw their loved one buried on family property or in the local cemetery, where the grave could be visited regularly. Because infant and childhood mortality rates were high, all people were likely to know someone their own age, or even younger, who had died. And it was common for children to experience the death of a parent.

Compared with earlier generations, today more young people reach adulthood without having experienced the death of someone they know well (Morgan, Laungani, & Palmer, 2009 ). When a death does occur, professionals in hospitals and funeral homes take care of most tasks that involve confronting it directly.

This distance from death undoubtedly contributes to a sense of uneasiness about it. Despite frequent images of death in television shows, movies, and news reports of accidents, murders, wars, and natural disasters, we live in a death-denying culture. Adults are often reluctant to talk about death with children and adolescents. And substitute expressions, such as “passing away,” “going out,” or “departing,” permit us to avoid acknowledging it candidly. In the following sections, we examine the development of conceptions of and attitudes toward death, along with ways to foster increased understanding and acceptance.

Childhood

Five-year-old Miriam arrived at our university laboratory preschool the day after her dog Pepper died. Instead of joining the other children, she stayed close to her teacher, Leslie, who noticed Miriam’s discomfort. “What’s wrong?” Leslie asked.

“Daddy said Pepper was so sick the vet had to put him to sleep.” For a moment, Miriam looked hopeful. “When I get home, Pepper might wake up.”

Leslie answered directly, “No, Pepper won’t get up again. He’s not asleep. He’s dead, and that means he can’t sleep, eat, run, or play anymore.”

Miriam wandered off but later returned to Leslie and, sobbing, confessed, “I chased Pepper too hard.”

Leslie put her arm around Miriam. “Pepper didn’t die because you chased him,” she explained. “He was very old and sick.”

Over the next few days, Miriam asked many questions: “When I go to sleep, will I die?” “Can a tummy ache make you die?” “Does Pepper feel better now?” “Will Mommy and Daddy die?”

Development of the Death Concept.

An understanding of death is based on five ideas:

· 1. Permanence. Once a living thing dies, it cannot be brought back to life.

· 2. Inevitability. All living things eventually die.

· 3. Cessation. All living functions, including thought, feeling, movement, and bodily processes, cease at death.

· 4. Applicability. Death applies only to living things.

· 5. Causation. Death is caused by a breakdown of bodily functioning.

To understand death, children must acquire some basic notions of biology—that animals and plants contain body parts (brain, heart, stomach; leaf, stem, roots) essential for maintaining life. They must also break down their global category of not alive into dead, inanimate, unreal, and nonexistent. Until children grasp these ideas, they interpret death in terms of familiar experiences—as a change in behavior (Slaughter, Jaakkola, & Carey, 1999 ; Slaughter & Lyons, 2003 ). Consequently, they may believe that they caused a relative’s or pet’s death; that having a stomachache can cause someone to die; that dead people eat, go to the bathroom, see, and think; and that death is like sleep.

Permanence is the first understood component of the death concept. Preschoolers accept this fact quickly, perhaps because they have seen it in other situations—for example, in the dead butterflies and beetles they pick up and inspect while playing outside. Appreciation of inevitability soon follows. At first, children think that certain people do not die—themselves, people like themselves (other children), and people with whom they have close emotional ties. Cessation, applicability, and causation are more challenging ideas (Kenyon, 2001 ). Preschoolers and kindergartners say that the dead lose the capacity for most bodily processes. But the majority of 10- to 12-year-olds continue to say that the dead are able to perceive, think, and feel (Bering & Bjorklund, 2004 ).

Many adults, too, believe in the persistence of mental activity and consciousness after death. And they probably encourage these ideas in children when, in conversations with them about a dead relative or pet, they invite the child to think of the deceased’s positive qualities and to sustain an emotional connection (Harris, 2011 ). It is not surprising, then, that most older children conclude that even if biological functions largely cease after death, thoughts and feelings continue in some form.

image8

Because of exposure to the realities of death, these children in El Salvador—carrying the coffin of an infant during a funeral—likely exceed many agemates in their grasp of what death means.

Individual and Cultural Variations.

Although children typically attain an adultlike understanding of death in middle childhood, wide individual differences exist (Speece & Brent, 1996 ). Terminally ill children under age 6 often have a well-developed concept of death (Linebarger, Sahler, & Egan, 2009; Nielson, 2012 ). If parents and health professionals have not been forthright, they discover that they are deathly ill in other ways—through nonverbal communication, eavesdropping, talking with other child patients, and perceiving physiological changes in their bodies. Children growing up on Israeli kibbutzim (agricultural settlements) who have witnessed terrorist attacks, family members’ departure on army tours, and parental anxiety about safety express an adultlike grasp of death by age 5 (Mahon, Goldberg, & Washington, 1999 ).

Ethnic variations suggest that religious teachings affect children’s understanding. In a comparison of four ethnic groups in Israel, Druze and Moslem children’s death concepts differed from those of Christian and Jewish children (Florian & Kravetz, 1985 ). The Druze emphasis on reincarnation and the greater religiosity of both Druze and Moslem groups may have led more of their children to deny that death is permanent and that the body stops functioning. Similarly, children of U.S. Southern Baptist families, who believe in an afterlife, were less likely to endorse permanence than were children of Unitarian families, who do not dwell on an afterlife (Candy-Gibbs, Sharp, & Petrun, 1985 ).

Enhancing Children’s Understanding.

Parents often worry that discussing death candidly with children will fuel their fears. But children with a good grasp of the facts of death express less anxiety about it (Slaughter & Griffiths, 2007 ). Direct explanations, like Leslie’s, that fit the child’s capacity to understand, work best. When adults use clichés or make misleading statements about the permanence of death, children may take these literally and react with confusion. For example, when a parent told her 5-year-old daughter, “Grandpa went on a long trip,” the child wondered, “Why didn’t he take me?” “When is he coming back?” Sometimes children ask difficult questions, such as “Will I die?” “Will you die?” Parents can be truthful as well as comforting by taking advantage of the child’s sense of time. “Not for many, many years,” they can say. “First I’m going to enjoy you as a grownup and be a grandparent.”

Another way to foster an accurate appreciation of death is to teach young children about human biology. Three- to 5-year-olds given lessons in the role of the heart, brain, lungs, stomach, and other organs in sustaining life have more advanced death concepts than children not given such lessons (Slaughter & Lyons, 2003 ).

Adult–child discussions should also be culturally sensitive. Rather than presenting scientific evidence as negating religious beliefs, parents and teachers can help children blend the two sources of knowledge. Older children often combine their appreciation of the death concept with religious and philosophical views, which offer solace in times of bereavement (Talwar, 2011 ). As we will see later, open, honest discussions not only contribute to a realistic understanding of death but also facilitate grieving after a child has experienced a loss.

Adolescence

Recall that teenagers have difficulty integrating logical insights with the realities of everyday life. In this sense, their understanding of death is not yet fully mature, as both their reasoning and behavior reveal.

The Gap Between Logic and Reality.

Teenagers can explain the permanence and cessation aspects of death, but they are attracted to alternatives. For example, adolescents often describe death as an enduring abstract state—“darkness,” “eternal light,” “transition,” or “nothingness” (Brent et al., 1996 ). They also formulate personal theories about life after death. Besides images of heaven and hell influenced by their religious background, they speculate about reincarnation, transmigration of souls, and spiritual survival on earth or at another level (Noppe & Noppe, 1997 ; Yang & Chen, 2002 ).

Although mortality in adolescence is low compared with that in infancy and adulthood, teenage deaths are typically sudden and human-induced; unintentional injuries, homicide, and suicide are leading causes. Adolescents are clearly aware that death happens to everyone and can occur at any time. But as their high-risk activities suggest, they do not take death personally.

What explains teenagers’ difficulty integrating logic with reality in the domain of death? First, adolescence is a period of rapid growth and onset of reproductive capacity—attainments that are the opposite of death! Second, recall the adolescent personal fable: Wrapped up in their own uniqueness, teenagers may conclude they are beyond reach of death. Finally, as teenagers construct a personal identity and experience their first freely chosen love relationships, they may be strongly attracted to romantic notions of death, which challenge logic (Noppe & Noppe, 1996 ). Not until early adulthood are young people capable of the relativistic thinking needed to reconcile these conflicting ideas (see Chapter 13 , page 451 ).