Describe alternatives for providing end-of-life care for the terminally ill.

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Ghapter 10

Death and Dying Alice Cahill, 68, had prepared well ahead for this day-the day she would die. Diagnosed 6 months previously with an inoperable brain tumor, she had used her good days to plan the kind of send-off she wanted, a good lish Wake that would bring family and friends together to celebrate her life rather than moum her death. She would die at home, not in a hospital, and be laid out in her coffin in the living room as tradition dictated. Three of her fiends had a small chamber music group. She asked them to perform at the wake and she gave them a list of her favorite songs. She made copies of her favorite poems and asked her daughter to read them. Last of all, she drew up a menu and ordered food for 200 from a local caterer. lt was going to be grand party.

Appropriately enough, in this last chapter we discuss the final chapter of life. We be- gin by considering how the moment of death is defined, and we examine how people view and react to death at different points in the life span. Then we look at how people confront their own deaths, covering a theory that people pass through stages as they come to grips with their approaching death. We also look at how people en- deavor to exert control over the circumstances that surround death, using living wills and assisted suicide. Finally, we consider bereavement and grief. We distinguish normal from unhealthy grief, and we discuss the consequences of a loss. Finally, we look at mourning and funerals, discussing how people acknowledge the passing of a loved one.

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Module 10.1 Death and Dying Across the life $pan What are the moral and ethical issues surrounding defining death?

Module 1A.2 Canfranting Peath DNR” assisted suicide, euthanasia … Where do you stand?

Module 10.3 Grief andB*veavernr,nt What’s the difference between bereavement and grief?

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Module 10.1 Deaffi and Sying Across the l-ife $pan Feel Like a Dinosaur

When Jules Beckham turned 100 last October, his family threw him a big party. ‘My kids, grandkids, great-grandkids all came,” he re- calls. “We were 40 in all, and two of my great-granddaughters are pregnant.” Missing from the celebration were Jules’s e/dest son, who died of cancer 5 years ago, and a granddaughter who was killed in a car accident. Absent, too, were his former colleagues from the high school where he taught English for 40 years. They’re all dead now. The same ls true of the men he fought beside in the Pacific in World War ll. Even the friends he played chess with after retirement are all gone. “l’m the last man standing,” he says. “l love my family dearly, but they’ve heard my reminiscences a hundred times, and they don’t get my references to anything that happened before 1960.”

Jules has drawn up a living will and shared it with his eldest daughter and his doctors. “lt’s funny,” he says. “When I was facing enemy fire in the war, I had to battle with the fear of dying every day, but now I’m calmer. I don’t want to die, but I feel a bit like a dinosaur, and I don’t want my life prolonged if I have severe brain damage or am paralyzed. lf 700 years has taught me anything, it’s that quality of life is much more valuable than quantity.”

Even if we reach 100 years, death is an experience that will happen to all of us at some time, as universal to the human condition as birth.

As such, it is a milestone of life that is central to an understanding of the life span.

Only recently have lifespan developmentalists given serious study to the developmental implications of dying, ln this module we will discuss death and dying from several perspectives. We begin by considering how we define death-a determination that is more complex than it seems. We then examine how people view and react to death at different points in the life span. And we consider the different views of death held by various societies.

Understanding Death It took a major legal and political battle, but eventually Terri Schiavo’s husband won the right to remove a feeding tube that had kept her alive for 15 years. Lying in a hospital bed all those years in what physicians called a “persistent vegetative state,” Schiavo was never expected to regain consciousness after suffering brain damage as a result of respiratory and cardiac arrest. After a series of coutl battles, her husband-despite the wishes of her parents-was allowed to direct caretakers to remove the feeding tube; Schiavo died soon afterward.

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functional death the absence of a heartbeat and breathing

brain death a diagnosis of death based on the cessation ofail signs ofbrain activity, as measured by electrical brain waves

Was Schiavo’s husband right in seeking to remove her feeding tube? Was she already dead when it was removed? Were her constitutional rights ignored by her husband’s action?

Such difficult questions illustrate the complexity of what are, literally, matters of life and death. Death is not only a biological event; it involves psychological aspects as wel1. We need to consider not only what defines death, but also how our conception of death changes across the li{e span.

Defining Death: When Does Life End? LO 10.1 Describe how the moment of death is defined. Alhat is death? The question seems clear, but defining the point at which life ceases is surprisingly complex. Medidne has advanced to the point where some people who would have been considered dead a few years ago would now be considered alive.

Functional death is defined by an absence of heartbeat and breathing. This defini- tion, howeveg, is more ambiguous than it seems. For example, a person whose heartbeat and breathing have ceased for as long as 5 minutes may be resuscitated and suffer little damage from the experience. Was the person who is now alive previously dead, as the functional definition would have it?

Because of this imprecisiory brain functioning is now used to determine the moment of death rather than heartbeat or respiration. In brain death, all signs of brain activity, as measured by electrical brain waves, have ceased. When brain death occurs, it is impossible to restore functioning.

Some medical experts suggest that defining death oniy as a lack of brain waves is too restrictive. They argue that losing the ability to think, reason, feel, and experience the world may define death, as well. In this view, which considers the psychologi- cal rami-fications, a person who suffers irreversible brain damage, who is in a coma, and who will never experience anything approaching a human li{e can be considered dead, even if some sort of primitive brain activity continues (Ressner, 2001; Yourg & Teitelbaum, 2010; Burkle, Sharp, & Wijdicks, 2014).

This argument, which moves us from strictly medical criteria to moral and philo- sophical considerations, is controversial. As a result, death is legally defined in most localities in the United States as the absence of brain functioning, although some laws still include the absence of respiration and heartbeat in their definition. In reality, no matter where a death occurs, brain waves are seldom measured. Usually, they are closely monitored only in special circumstances-when the time of death is signifi- cant, when organs may be transplanted, or when criminal or legal issues are involved.

The difficulty in establishing legal and medical definitions of death may reflect changes in understanding and attitudes that occur over the course of people’s lives.

Death Aereiss the Life $pan: Causes and Reactions LO 10.2 Analyze causes of and reactions to death across the life span.

Cheryl played flute in the school band. She had shoulder-length brown hair, brown eyes, and a smile ihat often gave way to a lopsided grin when her friends or older brother said something funny.

Cheryl’s family owned a small farm, and it was her job to feed the chickens and gather any eggs every morning before the school bus arrived. After she completed her chores, she gathered up whatever sewing project she was working on in Family and Consumer Sciences-Cheryl loved designing and creating her own clothing-and waved good-bye to her parents. “Don’t take any wooden nickels,” her dad always called after her. Cheryl thought it was a really dumb joke, but she loved that her dad never forgot to say it.

One Friday night, Cheryl’s dad suggested they hop in the truck and go get pizza. There were only two seat belts in the narrow cab, but Cheryl felt safe wedged in between her dad and her brother. They were riding down a two-lane highway, singing along with some silly song on the radio, when a car in the lane opposite lost control and crossed the center line, slamming into the truck. Without a seat belt, Cheryl’s body flew through the windshield^ Her father and brother survived, but for Cheryl, 13, life was over.

Death and Dying 46’l

Death is something we associate with old age, but for many individuals, death comes earlier. Because it seems “unnatural” for a young person like Cheryl to die, the reac- tions to such a death are particularly extreme. In the United States, in fact, some people believe that children should be sheltered from the reality of death. Yet people of every age can experience the death of friends and family members, as well as their own death. How do our reactions to death evolve as we age? We will consider several age grouPs.

DEATH IN INFANCY AND CHILDHOOD Despite its economic wealth, the United States has a relatively high infant mortality rate. In more than 50 other countries, fewer infants die in the first year of birth than in the United States (World Fact Book, 2016a).

As these statistics indicate, the number of parents who lose an infant is substan- tial. The death of a child arouses all the typical reactions one would have to a timelier deattu but family members may suffer severe effects as they struggle to deal with death at such an early age. One common reaction is extreme depression (Murphy, ]ohnson, & Wu, 2003; Cacciatore, 2010).

An exceptionally difficult death to confront is prenatal death, or miscarriage. Parents often form psychological bonds with their unborn child and may feel pro- found grief if it dies before birth. Moreover, friends and relatives often fail to under- stand the emotional impact of miscarriage, making parents feel their loss all the more keenly (zVheeler & Austiru 2001; Nikievii & Nicolaides,2014).

Another form of death that produces extreme stress, in part because it is so unantic- ipated, is sudden infant death syndrome. With sudden infant death syndrome (SIDS), sudden infant death which usually occurs between the ages of 2 and 4 months, a seemingly healthy baby syndrome (SIDS) stops breathing and dies inexplicably. the unexplained death of a

In cases oi SIpS, parents often feel intense guilt, and acquaintances may be suspi- seemingly healthy baby cious of the “true” cause of death. However, there is no known cause for SIDS, which seems to strike randomly, and parents’ guilt is unwarranted (Paterson et a1.,2006; Kinney & Thach, 2009; Mitchell, 2009).

During childhood, the most frequent cause of death is accidents, most of them as a result of motor vehicle crashes, fires, and drowning. However, a substantial number of children in the United States are victims of homicides, which have nearly tripled in number since 1960. Homicide is among the third- through fifth-leading cause of death for children between the ages of 1 and 24, and the leading cause of death for 15- to 24-year-old African Americans (National Vital Statistics Report, 2016).

For parents, the death of a child produces a profound sense of loss and grief. There is no worse death for most parents, including the loss of a spouse or of one’s own parents. They may feel their trust in the natural order of the world-where children “should” outlive their parents-has been violated. Believing it is their primary respon- sibility to protect their children from harm, they may feel they have failed when a child dies (Granek et a1., 2015).

Parents are almost never prepared to deal with the death of a child, and they may obsessively ask themselves why the death occurred. Because the bond between children and parents is so strong, parents sometimes feel that a part of themselves has died as well. The stress is so profound that it significantly increases the risk of hospi- talization for a mental disorder (Nikkola, Kaunonen, & Aho, 2073;Fox, Cacciatore, & Lacasse,2014).

CHILDHOOD CONCEPTIONS OF DEAIH Children do not really begin to develop a concept of death until around age 5. Although they are already well aware of death, they tend to view it as a temporary, reduced state of living, rather than a cessation. A preschool-age child might say, “Dead people don’t get hungry-well, maybe a little” (Kastenbaum ,1985, p. 629).

Some preschool children think of death as a sleep people may wake from, just as Sleeping Beauty awoke in the fairy tale (Lonetto, 1980). For these children, death is not particularly fearsome; rather, it is a curiosity. If people merely tried hard enough- by administering medicine, providing food, or using magic-dead people might “tetrfirt,”

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Adoiescents’ views of death may be highly romanticized and dramatic.

Children’s misunderstanding of death can have devastating emotional conse- quences. Children may believe they are somehow responsible for a person’s death. They may assume their bad behavior caused the death. They may also think that if the dead person really wanted to, she or he could return.

From an educator’s perspective: Given their developmental level and understanding of death, how do you think preschool children react to the death of a parent?

Around age 5, children better grasp the finality and irreversibility of death. They may personify death as a ghostlike or devilish figure. They do not regard death as uni- versal, but as something that happens only to certain people. It is not until about age 9 that they accept the universality and finality of death (Nagy, 1948). By middle child- hood, there is an awareness of the customs around death, such as funerals, crematiory and cemeteries (Hunter & Smith, 2008; Corr,2010b).

DEATH IN ADOLESCENCE We might expect the signi{icant cognitive development that occurs in adolescence to bring about a sophisticated, thoughtful, and reasoned view of death. However, in many ways, adolescents’ views of death are as unrealistic as those of younger children, although along different lines.

Adolescents understand the finality and irreversibility of death, yet they tend to think it can’t happen to them, which can lead to risky behavior. As we discussed previously, adolescents develop a personal fable, a set of beliefs that makes them feel unique and special. Thus, they may believe they are invulnerable and that the bad things that happen to other people won’t happen to them (Elkind, 1985).

Many times, the risky behavior that results from these beliefs causes death in adolescence. For instance, the most frequent cause of death among adoiescents is acci- dents, most often involving motor vehicles. Other frequent causes ilclude homicide, suicide, cancer/ and AIDS (National Vital Statistics Report, 2016).

z4ren adolescent feelings of invuh-rerability confront a fatal illness, the results can be shattering. Adolescents who learn they are terminally ill often feel angry and cheated-that li-fe has been unjust to them. Because they feel-and act-so negatively, it may be difficult for medical personnel to treat them effectively.

In contrast, some adolescents who are terminally ill react with total denial. Feeling indestructible, they may not accept the seriousness of their illness. If it does not cause them to reject medical treatment, some degree of denial may be useful because it allows

an adolescent to continue living a normal life as long as possible (Beale, Baile, & Aaron, 2005; Barrera et a1.,2013).

DEATH IN YOUNG ADULTHOOD Young adults feel primed to begin their lives. Past the preparatory time of childhood and adolescence, they are ready to make their mark on the world. Because death at such a point seems close to unthinkable, its occurrence is particularly difficult. In active pursuit of li{e goals, they are angry and impatient with any ilL:ress that threatens their future.

For young adults, the leading cause of death continues to be accidents, fol- lowed by suicide, homicide, and cancer. By the end of early adulthood, however, death from disease becomes more prevalent.

For young adults facing death, several concerns are acutely important. One is the desire to develop intimate relationships and express sexuality, each of which is inhibited, or completely prevented, by a terminal illness. For instance, people who test positive for the AIDS virus may find it difficult to start new relationships. Within evolving relationships, sexual activities present even more challenging issues.

Future planning is another concern of young adults. At a time when most people are mapping out careers and deciding when to start a famlly, young adults who are terminally ill face additional burdens. Should they marry, even though they may soon leave a partner widowed? Should a couple seek to con- ceive a child if it is likely to be raised by only one parent? How soon should one’s employer be told about a terminal illness, when the revelation may cost the young adult his or her job? None of these questions is easily answered.

Death and Dying 463

DEAIH IN MIDDLE ADULTHOOD For middle-aged people, the shock of a life- threatening disease-the most common cause of death in this period-is not so great. By this point, people are well aware that they wilt die someday, and they may be able to accept this possibility in a realistic manner.

Their sense of realism, though, doesn’t make the possibility of dying any easief. Fears about death are often greater in midlife than at any time previously-or even in later life. These fears may lead people to switch their focus to the number of years they

have remaining rather than the number of years they have already lived (Akhtar,201,0).

The most frequent cause of death in midlife is heart attack or stroke. Dying so unexpectedly does not allow for preparation, but it may be easier than a slow and painful death from a disease such as cancer. It is the kind of death most people prefer: When asked, they say they would like an instant and painless death that does not involve loss of any body part (Taylor, 2014).

DEATH IN LAIE ADULTHOOD By late adulthood, people know that the end is approaching. They face an increasing number of deaths in their environment. Spouses, siblings, and friends may have already died, a constant reminder of their own mortality.

At this age, the most likely causes of death are cancer, stroke, and heart disease. What would happen if these were eliminated? According to one estimate, the average 70-year-o1d’s life expectancy would increase by around 7 years (Hayward, Crimmins, & Saito,1997).

The prevalence of death in the lives of the elderly makes them less anxious about dying. However, this does not mean that people in late adulthood welcome death. Rather, they are more realistic and reflective about it. They think about death, and they may begin to prepare for it. Some begin to pull away from the world as physical and psychological energy diminishes (Akhtar, 2010).

Impending death is sometimes accompanied by rapid declines in cognitive func- tioning. In what is known as tlne terminal decline, a significant drop in memory and reading ability may foreshadow death within the next few years (Thorvaldsson et a1., 2008; Hrili.ir et a1.,2013; Gertsorf et a1.,2016).

Some elderly people actively seek out death, turning to suicide. In fact, the suicide rate for men climbs steadily during late adulthood, and no age group has a higher sui- cide rate than white men older than age 85. (Adolescents and young adults comrnit sui-

cide in greater numbers, but their rate of suicide-the number of suicides as a proPortion of the general adolescent population-is actually lower.) Suicide is often a consequence of severe depression or some form of dementia, or it may arise from the loss of a spouse (Mezuk et a1.,2008; Kjolseth, Ekeberg, & Steihaug, 2010; Dombrovski et a1.,2012).

A critical issue for older adults who are terminally ill is whether their lives still have value. More than younger adults, elderly people who are dying worry that they are burdens to their family or to society. They may even be given the message, some- times inadvertently, that society no longer values them and that they are viewed as ” dying” rather than being “very sick” (Kastenbaum, 2000).

In most cases, older people want to know if death is impending. Like younger patients, who usually prefer to know the truth about an illness, older people want the details. Ironically, caregivers usually wish to avoid telling patients that they are dying (Goold, Williams, & Arnold, 2000; Hagerty et a1.,2004).

Not all people, howevel, wish to know about their condition or that they are dying. Individuals react to death in substantially different ways, in part because of personality factors. For example, people who are generally anxious wolry more about death. There are also significant cultural differences in how people view and react to death, as we consider in the Cultural Dimensionsbox.

Death Hducation: Preparing for the Inevitable? LO 10.3 Describe the aims and benefits of death education.

“When will Mom come back from being dead?” “Why did Barry have to die?” “Did Grandpa die because I was bad?”

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Cultural Dimensions Differing Conceptions of Death ln the midst of a tribal celebration, an older man waits for his oldest

son to place a cord around his neck. The older man has been sick,

and he is ready to relinquish his ties to this earthly world. He asks that his son lift him to his death, and the son complies.

To Hindus in lndia, death is not an ending, but rather part of a continual cycle. Because they believe in reincarnation, death is thought to be followed by rebirth into a new life. Death, then, is seen as a companion to life.

People’s responses to death take many forms, particularly in different cultures. But even in Western societies, reactions to death and dying are quite diverse. For instance, is it better for a man to die after a full life in which he has raised a family and been successful in his job, or for a courageous and valiant young soldier to die defending his country in wartime? Has one person died a better death than the other?

The answer depends on one’s values, which reflect cultural and subcultural teachings, often shared through religious beliefs. Some societies view death as a punishment or as a judgment about one’s contributions to the world. Others see death as redemption from an earthly life of travail. Some view death as the start of an eternal life, while others believe that an earthly life is all there is (Bryant, 2003).

For members of Native American tribes, death is seen as a continuation of life. Members of the Lakota tribe believe that in death, people move to a spirit land called “Wanagi Makoce,”

Differing conceptions of death lead to different rituals. For example, in India, bodies may be floated in the Ganges River following death.

inhabited by all people and animals. Death, then, is not viewed with anger or seen as unfair. Similarly, some religions, such as Buddhism and Hinduism, believe in reincarnation, the conviction that the soul or spirit comes back to life in a newborn body, continuing the cycle of life (Huang, 2004).

The age at which people learn about death varies among cultures. ln cultures with high levels of violence and death, an awareness of death may come earlier in life. Research shows that children in Northern lreland and lsrael understand the finality, irreversibility, and inevitability of death at an earlier age than children in the United States and Britain (Atchley, 2000; Braun, Pietsch, & Blanchette, 2000).

thanatologists people who study death and dying

Children’s questions such as these illustrate why many developmentalists, as well as thanatologists, people who study death and dying, have suggested that death education should be a component of everyone’s schooling. Recently, such instruction has emerged. Death education encompasses programs designed to help people of all ages deal better with death, dying, and grief-both others’ deaths and their own.

Death education arose as a response to the way we hide death, at least in most Western societies. We typically let hospitals deal with the dying, and we do not talk to children about death or allow them to go to funerals for fear of disturbing them. Even emergency workers and medical specialists are uncomfortable talk- ing about it. Because it is seldom discussed and is so removed from everyd ay life, people may have little opportunity to confront their feelings about death or to gain a realistic sense of it (Wass, 2004; Kim & Lee, 2009; Waldrop & Kirkendall,2009; Kellehear, 2015).

Several types of death education programs exist. Among them:

r Crisis intervention education. A/hen the World Tiade Center was attacked, chil- dren in the area were the subjects of several kinds of crisis intervention designed to deal with their anxieties. Younger children, whose conceptions of death were shaky at besf needed explanations of the loss of life that day geared to their levels of cognitive development. Crisis intervention education is used in less extreme times as well. For example, it is common for schools to make emergency counseling available if a student is killed or commits suicide (Sandoval, Scott, & Padi1la,2009; Markell,2010).

Death and DYing 465

.Routinedeatheducation.Althoughrelativelylittlecurricularmaterialondeath exists for elementary students’ coursework

in high schools is becoming more

common. Colleges u”td ”-‘i”e”ities increasi’1gty iittt’a” courses about death in

such departments as psychology’ 11*?” 1*iopment’-sociology’ and education

(Eckerd, 2009; BonJ,’iJo”a”i”e Mastora’ 2013; Corr’ 2015)’

. Death education for members of the helping professions-^^l,1ot”ttto^als who

willdealwithd’eath,dying,andgriefintheir.i.””,,haveaspecialneedfordeath education. Almost ,ii i-r”j”rr ,,ia nurri,-rg tJo.rr

now offei some form of death

education. The most successful progru*Jr1o, only offer p:olid:tt ways to help

patients deal with ;h; ;*” imp””ai’-tg.a””tf”tt ()t those of family members’ but

also allow students to explore their feelings about the topic (Haas-Thompson’

Alston, & Holbert,2008; Kehl & McCarty’ 2012)’

Although death ed’ucation will not complelety.delfstifY -U-:1*’ the programs

iustdescribedmayhelppeoplecometog”p’*itftwhatis’alongwithbirth’themost ‘rrniversal-and certain-of all human experlences’

Review, Check, and APPIY

Review LO 10.1 Describe how the moment of death

is defined’

Functional death is defined as the cessation of heartbeat and

,;;;”, brain death is defined by the absence of elec-

trical brain waves’ The definition of death has changed as

medical advances allow us to resuscitate people who would

;;; h””” been considered dead’ Some medical experts

believethatdeathocculswhenaPelsoncannolonger think, reason, or feel, and can never again

live anything

resembling a human life’

Check Yourself

L. The cessation of the heartbeat and breathing is the defini-

tion of ———— death’

a. functional b. biomedical c. brain d. legal

2. The concept of the personal fable’ which can lead to feel-

ings of invulneradility’ makes death-occurring during

” Pu’ticularly surprising

and shattering’

a. childhood b. adolescence c. Young adulthood d. middle adulthood

LO 10’2 Analyze causes of and reactions to death across

the life sPan’

Thedeathofaninfantolyoungchildcanbeparticularly difficult for parents, and ftr an adolescent death

appears

to be unthinkable’ Cultural differences in attitudes and

beliefs about death strongly influence people,s reactions

to it.

LO 10.3 Describe the aims andbenefits of death education’

Thanatologists recommend that death education become a

normal part of learninsto helr p1g13 “”1-:t::.111,:::-:t ih;;.ti universal, anJ certain’ of all human expenences’

3.

-are

people who study death and dying’

a. CYtologists b. Thanatologists c. NeuroPathologists d. Teratologists

4. Emergency counseling provided within schools to help

students deal with J’aa”tt events such as the 2001

attacks on the World Tiade Center and the Pentagon is

known as

-‘

a. routine death education b. thanatologY training c. crisis intervention education d. demYstification training

Applying Lifespan Development , ..:^:A^) A.o rhere rrisa( his age Do you think schools shourd teach preteens

and adolescents about suicide? Are there disadvantages to teaching t

group about suicide, o’ i’ it b”st to ieal with the topic early?

466 Chapterl0

Module 10.2 Qanfronting Death Deciding to Say Good-Bye

Carol Reyes had been active all her life. When she broke her pelvis at 89, she was determined to walk again. With 6 months of intensive physical therapy, she did. At 93, she came down with pneumonia. After a month in the hospital, she returned home to the things she loved-her cats, her books, and taking an active part in local poti- tics-a little weaker, but basically sound.

Three years later, Carol’s doctor told her she had ALS, a dis- ease in which the motor neurons in the brain and spinal cord slowly die. She could take a drug called Rilutek to s/ow lts progress, but eventually her muscles would atrophy, making it hard to use her hands or walk. She’d have trouble speaking and swallowing. ln the end, her lungs would be paralyzed.

Carol agreed to try the drug, but told her doctor she wanted a DNR-Do tVot Resuscikte Order-for when her lungs began seizing up and breathing became difficult. “That’s not a life I’d like to be liv- ing,” she said. Four months later, Carol Reyes found herself gasping for breath. She refused oxygen. She refused to go to the hospital. She died quickly, in her own bed. Like other deaths, Reyes,s raises a myriad of difficult questions. Was her refusal to take oxygen equivalent to suicide? Should the ambulance medic have complied with the request? Was she coping with her impending death effectively? How do people come to terms with death, and how do they react and adapt to lt? Lifespan developmentalists

and other specialists in death and dying have struggled to find answers.

ln this module, we look at how people confront their own death. We discuss the theory that people move through stages as they come to grips with their approaching death. We also look at how people use living wills and assisted suicide.

L

Understanding the Process of Dying No individual has influenced our understanding of the way people confront death more than Elisabeth Kiibler-Ross. A psychiatris! Kiibler-Ross developed a theory of death and dying based on interviews with dying people and those caring for them (Ktibler-Ross, t9 69, 1982).

Steps Toward Death: Ktibler-Ross’s Theory LO 10,4 Analyze Kiibler-Ross’s theory on the process of dying. Ktibler-Ross initially suggested that people pass t}rough five basic steps as they move toward death (summarized in Figure 10-1).

DENIAL “No, I can’t be dying. There must be some mistake.” It is typical for people to protest on learning that they have a terminal disease. This is the first stage of dying, deninl. rn denial, people resist the idea that they are going to die. They may argue thit their test results have been mixed up, an X-ray has been misread, or their physician is just wrong. They may flatly reject the diagnosis, simply refusing to believe the news. In extreme cases/ memories of weeks in the hospital are forgotten. In other forms of denial, patients fluctuate between refusing to accept the news and confiding that they know they are going to die (Teutsch,2003).

Far from a sign of a lost sense of reality and deteriorating mental health, denial is a defense mechanism that helps people absorb the news on their own terms and pace. Then they can move on and come to grips with the reality of their death.

ANGER After denial, people may express anger. They may be angry at everyone: people in good health, spouses and family members, caregivers, children. They may

Death and Dying 467

Terminal illness diagnosed (significant change)

realization of consequences

Acceptance (increased self-reliance)

Movement away from increased self-awareness and contact with others

Loneliness lnternal conflict Guilt Meaninglessness

lash out and wonder-sometimes aloud-why they are dying and not someone else’ They may be furious at God, reasoning that they have led good lives and far worse people in the world should be dying.

It is not easy to be around people in the anger stage. They may say and do things that are painful and sometimes unfathomable. Eventually, though, most move beyond anger to another development-bargaining.

BARGAINING “lf you’re good, you’Il be rewarded.” Many people try to apply this pearl of childhood wisdom to their impending death, promising to be better people if they are rewarded by staying alive.

In bargaining, dyi.g people try to negotiate their way out of death. They may swear to dedicate their lives to the poor if God saves them. They may promise that if they can just live long enough to see a son married, they will willingly accept death later.

However, these promises are rarely kept. If one request appears to be granted, people typically seek another, and yet another. Furthermore, they may be unable to fulfitl their promises because their illnesses keep progressing and prevent them from achieving what they said they would do.

In some ways, bargaining may have positive consequences. Although death can- not be postponed indefinitely, having a goal of attending a particular event or living until a certain time may in fact delay death until then. For instance, death rates of ]ewish people fall just before the Passover and rise just after. Similarly, the death rate among older Chinese women falls before and during important holidays and rises after (Phillip s, 1992).

In the end, of course, no one can bargain away death. When people eventually realize this, they often move into the depression stage.

DEPRESSION Many dying people experience depression. Realizing that the issue is settled and can’t be bargained away, they are overwhelmed with a deep sense of 1oss. They know that they are losing their loved ones and reaching the end of their lives.

Their depression may be reactive or preparatory.Inreactiae depression, the sadness is based on events that have already occurred: the loss of dignity with many medical procedures, the end ol a job, or the knowledge that they will never return home. In preparatory depression, people feel sadness over future losses. They know that death will end their relationships and that they will never see future generations. The reality of death is inescapable in this stage, and it brings profound sadness over the unalter- able conclusion of one’s li{e.

ACCEPTANCE Kr.ibler-Ross suggested that the final step of dying is acceptance. People who have developed acceptance are fully aware that death is impending. Unemotional and uncommunicative, they have virtually no feelings-positive or negative-about

Figure 10-1 Moving Toward the End of Life The steps toward death, according to Ktlbler-Ross (1975). Do you think there are cultural differences in the steps?

Gradual the real

Bargaining Iffill./,/

Anger (emotion)

Depression

468 Chapter 10

the present or future. They have made peace with themselves, and they may wish to be left alone. For them, death holds no sting.

From an educator’s perspective: Do you think Kubler-Ross’s five steps of dying might be subject to cultural influences? Age differences? Why or why not?

EVALUATING KUBLER-ROSS’S THEORY Ktibler-Ross has had an enormous impact on the way we look at death. She is recognized as a pioneer in observing systemati- cally how people approach their own deaths. She was almost single-handedly respon- sible for bringing death as a phenomenon into public awareness. Her contributions have been particularly influential among those who provide direct care to the dying.

On the other hand, there are some obvious limitations to her conception of dyi.g. It is largely limited to those who are aware that they are dying and who die relatively slowly. It does not apply to people who suffer from diseases where the outcome and timing are uncertain.

The most important criticisms, however, concern the stage-like nature of Kiibler- Ross’s theory. Not every person passes through every step on the way to death, and some people move through the steps in a different sequence. Some people even go through the same steps several times. Depressed patients may show bursts of ange1, and an angry patient may bargain for more time (Gilbert , 2012;Larson,2074; Corr,2OlS).

Not everyone, thery proceeds through the stages in the same way. For example, a study of more than 200 recently bereaved people were interviewed immediately and then several months later. If Kribler-Ross’s theory was correct, the final stage of acceptance comes at the end of a lengthy grieving process. But most of the partici- pants expressed acceptance of the passing of their loved one right from the beginning. Moreover, rather than feeling anger or depression, two of the other putative stages of grief, participants reported mostly feeling a yearning for the deceased person. Rather than a series of fixed stages, grief looks more like an assortment of symptoms that rise and fall and eventually dissipate (Maciejewski, et aI.,2007; Genevro & Miller, 2010; Camino & Ritter,2012).

The finding that people often follow their own, unique personal trajectories of grief has been especially important for medical and other caregivers who work with dying people. Because Ktibler-Ross’s stages have become so well known, well-mean- ing caregivers have sometimes tried to encourage patients to work through the steps in a prescribed order, without enough consideration for their individual needs.

Finally, people’s reactions to impending death differ. The cause of death; the duration of the dying process; the person’s age, sex, and personality; and the social support available from family and friends all influence the course of dying and one’s responses to it (Carver & Scheier,2002; Roos,2013).

In response to concerns about Kribler-Ross’s account, other theorists have devel- oped alternative ideas. Psychologist Edwin Shneidman, for example, suggests that “themes” in people’s reactions to dying can occur-and recur-in any order. These include incredulity, a sense of unfairness, fear of pain or even general terror, and fan- tasies of being rescued (Leenaars & Shneidman,1999; Shneidman, 2007).

Another theorist, Charles Corr, suggests that, as in other periods of life, people who are dying face a set of psychological tasks. These include minimizing physical stress and satisfying physical needs. Other tasks involve psychological requirements such as maintaining a sense of security and autonomy, as well maximizing the the rich- ness of life, continuing or deepening their relationships with other people, and foster- ing hope, often through spiritual searching (Corr, Nabe, & Corr, 2006,2010; Corr, 2015).

Choosing the Nature of Death LO 10.5 Explain ways in which people can exercise control over how they spend

their last days.

When Colin Rapasand was a first-year resident years ago, one of his first assignments was the geriatric ward. Cheerful and outgoing, Colin invariably addressed the patienis as “Uncle” and ‘Auntie,” reflecting his deep-Southern roots.

Death and Dying 469

I

He recalls one patient in particular. “When my crazy schedule allowed, I loved spending time

with Auntie Jessica. Auntie J was 93 years old, rapidly failing, but with the sharpest mind.

When I had late rounds, I would sometimes sit on the foot of her bed and chat with her.

Great stories, huge spirit, lively intelligence.

‘Auntie J’s chart had her listed as a DNR, and I knew that she didn’t want ‘any of that me-

chanical nonsense’ done to her, as she put it. But one night I was all alone on rounds and

stopped in to see her. Her respiration was just about zero and her heart was beating fitfully.

I watched as her numbers got worse. lnstead of ‘letting nature take its course,’ I went to her

side and leaned over her, calling her name. At the same time I compressed her chest rapidly,

100 times a minute, performing CPR on her slight body. I got the respiration going fairly well,

but her heart was still weak and fluttering.

“l grabbed the paddles and iolted her once, twice, then third time lucky. Her breathing be-

came audible and her heartbeat returned to its usual level. Auntie J lived another 4 months.

“l claimed to the administrators that in the heat of the moment I had forgotten about the DNR.

But I knew I hadn’t. I had simply ‘let nature take its course’-my nature, my human nature.”

DNRS The letters “DNR” on a patient’s medical chart have a simple ar”rd clear mean- ing: “Do Not Resuscitate.” DNR means that no extraordinary means are to be taken to keep a patient alive. For terminally ill patients, “DNR” may mean the difference between dying immediately or living additional days, months, or even years, kept alive only by the most extreme, invasive, and even painful medical procedures’

The DNR decision entails several issues. One is differentiating “extreme” and “extraordinary” measures from routine ones. There are no hard-and-fast rules; people making the decision must consider the needs of the patient, his or her prior medical history, and factors such as age and even religion. For instance, different standards might apply to a 72-year-old and an 85-year-old with the same medical condition. Other questions concern quality of life. How can we determine an individual’s cur- rent quality of life and whether it will be improved or diminished by a medical intervention? Who makes these decisions-the patient, a family member, or medical personnel?

One thing is clear: Like Colin Rapasand,- medical personnel are reluctant to carry out the wishes of the terminally ill and their families to suspend aggressive treatment.

Many terminally ill patients choose “DN&” or “Do Not Resuscitate,” as away to avoid extraordinary medical interventions.

470 Chapter 10

living wills legal documents designating what medical treatments people want or do not want if they cannot express their wishes

euthanasia the practice of assisting people who are terminally ili to die more quickly

Even when it is certain that a patient is going to die, and the patient does not wish further treatment, physicians often claim to be unaware of their patients’ wishes. Although one-third of patients ask not to be resuscitated, less than half of these peo- ple’s physicians say they know their patients’preferences. In addition, only 49 percent of patients have their wishes entered on their medical charts. Physicians and other providers may be reluctant to act on DNR requests in part because they are trained to save patients, not permit them to die, and in part to avoid legal liability (Goold, Williams, & Arnold, 2000; McArd7e,2002; Goldman et al., 2013).

LIVING WILLS To gain more control over death decisions, people are increasingly signing living wills. A living will is a legal document that designates the medical treatments a person does or does not want if the person cannot express his or her wishes (see Figure 10-2).

Some people designate a specific person, cailed a healthcare proxy, to act as their representative for healthcare decisions. Healthcare proxies are authorized either in living wills or in a legal document known as a durable power of attorney. Healthcare proxies may be authorized to deal with all medical care problems (such as a coma) or only terminal ill nesses.

As with DNR orders, living wills are ineffective unless people make sure their healthcare proxies and doctors know their wishes. Although they may be reluctant to do this, people should have frank conversations with their healthcare proxies.

EUTHANASIA AND ASSISTED SUICIDE Dr. ]ack Kevorkian became well known in the 1990s for his invention and promotion of a “suicide machine,” which allowed patients to push a button and release anesthesia and a drug that stops the heart. By supplying the machine and the drugs, which patients administered themselves, Kevorkian was participating in assisted suicide, providing the means for a terminally ill person to commit suicide. Kevorkian spent 8 years in prison for second-degree murder for his participation in an assisted suicide show,n on the television show 60 Minutes.

Assisted suicide is bitterly controversial in the United States and illegal in most states. The exceptions are California, Montana, oregory vermont, and washingtory all of which passed “right-to-die laws” (Ganzini, Beeq, & Brouns, 2OO6;Davey,2007;Edwards,2015).

In many countries, assisted suicide is widely accepted. For instance, in the Netherlands medical personnel may help end their patients’ lives if they meet several conditions: At least fwo physicians must determine that the patient is terminally i11, there must be unbearable physical or mental suffering, the patient must give informed consent in writing, and relatives must be informed beforehand (Battin er a7.,2007; Onwuteaka-Philipsen et a1.,2010; Augestad et a1., 2013).

Assisted suicide is one form of euthanasia, the practice of assisting terminally ill people to die more quickly. Popularly known as “mercy killing,” euthanasia has sev- eral forms. Passiae euthanasia involves removing respirators or other medical equip- ment that may be sustaining a patient’s life, to allow him or her to die naturally-such as when medical staff follow a DNR order. In uoluntary actiae euthanasia caregiverc or medical staff act to end a person’s life before death would normally occur, perhaps by administering a lethal dose of pain medication. Assisted suicide, as we have seen, lies between passive and voluntary active euthanasia. For all the controversy surrounding the practice, euthanasia is surprisingly widespread. One survey of nurses in intensive care units found that 20 percent had deliberately hastened a patient’s death at least once, and other experts assert that euthanasia is far from rare (Asch,1996).

The controversy arises from the question of who should control life. Does the right to one’s life belong to the individual, the person’s physicians, his or her depen- dents, the government, or some deity? Because we claim to have the absolute right to create lives in the form of babies, some people argue that we should also have the absolute right to end our lives (Allen et a1.,2006; Goldney, 2012).

Many opponents argue that the practice is morally wrong. In their view, pre- maturely ending the life of a person, no matter how willing, is murder. others point out that physicians are often inaccurate in predicting how long a person will live. For example, a large-scale study known as SUPPoRT-the study to understand Prognoses and Preferences for Outcomes and Risks of Treatment-found that patients

Death and Dying 471

(

Figure L0-2 nn Example of Living Will What steps can people take to make sure the wishes they write into their living wills are carried out?

I

b”irg “f -r”d ,1″d, *rr”ffie to be followed if I

become permanently unable to participate in decisions regarding my medical care. These instructions reflect my firm and settled commitment to decline medical treatment under the circumstances indicated below:

I direct my attending physician to withhold or withdraw treatment that merely prolongs my dying, if I should be in an incurable or irreversible mental or physical condition with no reasonable expectation of recovery, including but not limited to: (a) a terminal condition; (b) a permanently unconscious condition; or (c) a minimally conscious condition in which I am permanently unable to make decisions or express my wishes.

I direct that treatment be limited to measures to keep me comfortable and to relieve pain, including any pain that might occur by withholding or withdrawing treatment. While I understand that I am not legally required to be specific about future treatments, if Iam in the condition(s) descibed above I feel especially strongly about the following fieatments:

I do not want cardiac resuscitation, I do not want mechanical respiration. I do not want tube feeding. I do not want antibiotics.

However, I do want maximum pain relief, even if it may hasten my death.

Other directions (insert personal instructions):

These directions express my legal right to refuse treatment under federal and state law. I intend my instructions to be carried out, unless I have revoked them in a new writing or by clearly indicating that I have changed my mind.

Signed: Date:

Statement by Witnesses I declare thatthe person who signed this document appears to be at least eighteen (18) years of age, of sound mind, and under no constraint or undue influence. The person who signed this document appeared to do so willingly and free from duress. He or she signed (or asked another to sign for him or her) this document in my presence.

Address:

often outlive physicians’ predictions of when they will die-in some cases living years after being given no more than a 50 percent chance of living 6 more months (Bishop, 2006; Peel & Harding, 2015).

Another argument against euthanasia focuses on the emotional state of the patient. Even if patients beg healthcare providers to help them die, they may be

472 ChapterlO

home care an alternative to hospitalization in which dying people stay in their homes and receive treatment from their families and visiting medical staff

hospice care care provided for the dying in institutions devoted to those who are terminally ill

suffering from a form of depression that may be treated with antidepressant once the depression lifts, patients may change their minds about wanting (Gostin, 2006; McLachlan, 2008; Schildmann & Schildmann, 2013).

Where to Die: Easing the Final Passage LO 10.6 Describe alternatives for providing end-of-life care for the

terminally ill.

Dina Bianga loves her work. Dina is a registered nurse with the Hospice of Michigan; her job is to meet the physical and psychological needs of the terminally ill.

“You need compassion and a good clinical background,” she says. ,,you also have to be flex- ible. You go into the home, hospital, nursing home, adult foster care-wherever the patient is.,,

Dina likes the interdisciplinary approach that hospice work requires. “You form a team with others who provide social work, spiritual care, home health aid, grief support, and administrative support.,,

Surprisingly, the patients are not the most challenging part of the job. Families and friends are.

“Families are frightened, and everything seems out of control. They,re not always ready to accept that death is coming soon, so you have to be careful and sensitive how you word things. lf they are well informed on what to expect, the transition is smoother and a more comfortable atmosphere is created for the patient.,,

About half the people in the United States who die do so in hospitals. Yet, hospitals are among the least desirable places in which to face death. They are typically imper- sonal, with staff rotating through the day. Because visiting hours are lirnlt”a” people frequently die alone, without the comfort of loved ones.

Hospitals are designed to make people better, not provide custodial care for the dying, which is extraordinarily expensive. Consequently, hospitals tlpically don,t have the resources to deal adequately with the emotional requiiementi tf terminally ill patients and their families.

Because of this, several alternatives to hospitalization have arisen. In home care, dying people stay in their homes and receive treatment from their families and visit- ing medical staff. Many dying patients prefer home care because they can spend their final days in a familiar environment, with people they love and a lifetime iccumula- tion of heasures around them.

But home care can be quite difficult for family members. True, giving something precious to people they love offers family members substantial emotional solace, but being on call24 hours a day is extraordinarily draining, both physically and emotion- ally. Furthermore, because most relatives are not trained in nuising, they may provide less than optimal medical care (Perreault, Fothergill-Bourbonnais, & Fiset, 2004).

Another alternative to hospitalization that is becoming increasingly prevalent is hospice care. Hospice care is care for the dying provided in institutions devoted to the terminally ill. They are designed to provide a warm, supportive environ- ment for the dying. They do not focus on extending people,s lives, but on making their final days pleasant and meaningful. Typically, people who go to hospices no longer face painful treatments or extraordinary ot invasive means to extend their lives. The emphasis is on making patients’ lives as full as pos- sible, not on squeezing out every possible moment of life at any cost (]ohnson, Kassner, & Kutner, 2004; Hanson et a1.,201,0; York et a1.,2072).

Although the research is far from conclusive, hospice patients appear to be more satisfied with the care they receive ‘L than those who receive treatment in more traditional settings. Hospice care, then, provides a clear alternative to traditional hospitalization for the terminally ill (Tang, Aaronsory & Forbes, 2004; Seymour et a1.,2007; Rhodes et a1.,2008; Clark,2015).

drugs. to die

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Death and Dying 473

Review, Check, and ApPly Review LO 10,4 Analyze Kiibler-Ross’s theory on the process

of dying.

Elisabeth Ktibler-Ross identified five steps toward dying: denial, anger, bargaining, depressiory and acceptance. Although Kribler-Ross has added to our understanding of the process of dying, the steps she identified are not universal. Recently, other theorists have developed alternative ideas.

l-O 10.5 Explain ways in which people can exercise control over how they spend their last days.

Issues surrounding dying are highly controversial, includ- ing the measures that physicians should apply to keep

Check Yourself 1. Kiibler-Ross initially suggested that people pass

through basic steps or stages as they approach death’ The first staee is

a. grief b. acceptance c. anger d. denial

2. According to Kribler-Ross, dying people who prom- ise to give their money to charity if only they can have another few months of life are in the

stage

of dying.

a. anger b. depression c. denial d. bargaining

dying patients alive and who should make the decisions about those measures. Assisted suicide and, more gener- ally, euthanasia are highly controversial and are illegal in most of the United States, although many people believe they should be legalized if they are regulated.

LO 10.6 Describe alternatives for providing end-of-life care for the terminally ill.

Although most people in the United States die in hospi- tals, increasing numbers are choosing home care or hos- pice care for their final days.

In the medical communitv DNR stands for -a. Do Not Renew

b. Daily Notice of Revision c. Decision Not to Revive d. Do Not Resuscitate

Some people designate a specific person, called a

-,

to act as their representative for healthcare decisions.

a. health associate b. healthcare proxy c. lega1 aide d. personal care attendant

3.

4.

Applying Lifespan Development Do you think it would be wise to suggest hospice care to a terminally i1l family member who is in the bargaining stage

of dying? Which of the stages identified by Kribler-Ross would be the most appropriate for making such a suggestion?

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Facing the Void

When they told me my husband Jim had died during surgery, I went

mute. All I wanted was to go into a dark room, curl up in a ball, and

sleep. Spooky, isn’t it, because what I wanted to do was a lot like

dying. But I couldn’t stand words and I couldn’t stand feeling- I didn’t want to feel anything. Because, of course, the pain u/as so

huge, I was afraid it would break me. I went home 2 days after he

died and everything hurt. The sight of his clothing, his guitar, and all the photographs. lt’s been 2 months and I’m better now, but it

still hurts.

Kate 5., 78, widow.

It is a universal experience, but most of us are surprisingly ill- prepared for the grief that follows the death of a loved one. Particularly in Western societies, where life expeciancy is long and

mortality rates are low, people view death as atypical rather than

expected. This attitude makes grief all the more difficult to bear.

ln this module, we consider bereavement and grief. We examine the difficulties in distinguishing normal from unhealthy grief

and the consequences of loss. The module also looks at mourning

and funerals, discussing how people can prepare themselves for the

inevitability of death.

474 Chapter 10

Every soclety has its own ways of mourning.

Because an individual’s death represents an important transition, not only for loved ones but also for an entire community, the rites associated with death take on an added importance. The emotional significance of death, combined with the pressure of enterprising salespersons, leads many to overspend on funerals.

Death: Effects on Survivors ln our culture, only babies are buried; just about everyone else is cremated. When my father died, my elder brother took the lead and, with the other men observing, approached the pyre and lit it.

My father’s body burned well. After the fire died down, my brother oversaw the gathering of the ashes and bone fragments, and we all took a bath to purify us. Despite this and subse- quent baths, we in the close family were considered polluted for 13 days.

Finally, after the 13 days, we gathered for a big meal. The centerpiece was the preparation of rice balls (pinda), which we offered to the spirit of my father. At the end of the meal we dedicated gifts for distribution to the poor.

ln Hindu culture, the idea behind these ceremonies is to honor the dead person,s memory. More traditional people believe that it helps the soul pass to the realm of yama, the god of death, rather than hanging on in this world as a ghost.

This ritual is specifically Hindu, and yet, in its carefully prescribed roles for survivors and its focus on honoring the dead, it shares key elements with western rituals. The first step in grieving, for most survivors in western countries, is some sort of funeral.

Saying Farewell: Final Rites and Mourning L* 1*.? Analyze the cultural meaning of funeral rites in western and

other cultures.

Death is a big business in the united states. The average funeral and burial costs $2000, including an ornate, polished coffin, limousine transporta- tion, and preservation and viewing of the body (Bryant, 2003; American Association of Retired Persons [AARP],2004).

Funerals are grandiose in part because of the vurnerability of the sur- vivors who typically make the arrangements. wishing to demonstrate love and affection, the survivors are susceptible to suggestions that they should “provide the best” for the deceased (Culvea 2003).

But in large measure, social norms and customs determine the nature of funerals just as they do for weddings. In a sense a funerar is not only a public acknowledgment that an individual has died, but recognition of everyone’s mortality and an acceptance of the cycle of life.

In Western societies, funeral rituals follow a typical pattern. The body is prepared in some way and dressed in special clothing. There is usually a religious rite, a eulogy, a procession of some sort, and some formal period, such as the wake for Irish Catholics and shivah for ]ews, in which relatives and friends visit the family and pay their respects. Military funerals typically include the firing of weap- ons and a flag draped over the coffin.

As we saw in the prologue, non-Western funer- als are different. In some societies mourners shave their heads as a sign of grief, and in others they allow the hair to grow and stop shaving for a time. In other cultures, mourners may be hired to wail and grieve. Sometimes noisy celebrations take place, whereas in other cultures silence is the norm. Culfure determines even the nature of emotional displays, such as the amount and timing of crying (Peters, 2070;Hoy,20l3).

Mourners in Balinese funerals in lndonesia show little emotion because they believe the gods will hear their prayers only if they are calm. ln cgntrast, mourn- ers at African American funerals show their grief, and

Death and Dying 475

funeral rituals allow attendees to display their feelings (Rosenblatt & Wallace,2005; Collins & Doolittle, 2006;Waltes2012).

Historically, some cultures developed rather extreme funeral rites. For example, insuttee, a kaditional Hindu practice in Lrdia that is now illegal, a widow was expected to throw herself into the fire that consumed her husband’s body. In ancient China, ser- vants were sometimes buried (alive) with their masters’bodies.

Ultimately, no matter the ritual, all funerals basically serve the same function: They mark the endpoint of the life of the personwho has died-and provide a formal forum for the feel- ings of the survivors, a place where they can come together, share their grief, and comfort one another. (Also see the From Res ear ch t o P r actice box.)

Bereavement and Grief LO 10.8 Describe how survivors react to and cope with death.

The news hit the world like a tidal wave: The musician Prince was dead at age 57. Prince, a pop phenomenon who had earned tens of millions of dollars from his recordings and perfor-

mances, seemed too young to die.

Prince’s death set off an explosion of public arief. Tributes poured in from politicians and

celebrities, and musical tributes were held in many locales. Sales of Prince’s music reached

unprecedented levels.

After the death of a loved one, a painful period of adjustment follows, involving bereavement and grief. Bereavement is acknowledgment of the objective fact that one has experienced a death, and grief is the emotional response to one’s loss.

The first stage of grief typically entails shock, numbness, disbelief, or outright denial. People try to avoid the reality of the situation and pursue their usual routines,

From Research to Practice The Rising Popularity of Cremation

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bereavement acknowledgment of the objective fact that one has experienced a death

grief the emotional response to one’s loss

f

What will happen to your body when you die? Until about 20 years

ago, the answer to that question was the same for most people:

It will be buried. Burial entails placing the body in a wood or metal

container and burying it in the ground, usually in a cemetery and

usually with a stone or metal monument to mark the location. The

body may first be injected with preservative chemicals to slow the

decomposition process long enough to keep it presentable for viewing during visitatiorl or funeral services, but nothing can stop

its eventual return to its constituent elements (Sanburn, 2013).

Cremation uses intense heat and flame to greatly accelerate the decomposition process, achieving in about an hour what would take many years underground. The body is

reduced to a small pile of ash, minerals, and bone fragments (which are then pulverized). Largely because of tradition and religious restrictions, burial has historically been greatly

favored over cremation in the United States. But cremation has surged in popularity over the last couple of decades; its rate has increased from less than 25 percent in the late 1990s to nearly 50 percent today and is expected to continue growing for decades to come (Delorl,2O12).

Why the sudden shift in attitudes away from burial toward

cremation? Economy has a lot to do with it. Americans became

a lot more frugal after the economic downturn in 2008, and cremation is simply cheaper by far than burial-about one-third the cost. But other factors are at play, too. An important one is increased mobility. Burial made more sense in a time when

most people lived and died not far from where they were born.

People are increasingly leaving their birth places to attend school, work, retire, and ultimately die in different places, making it much less clear where the appropriate location for their burial would be (Dickinson, 2012; Sanburn, 2013).

The many options for disposition of cremated remains not only offer alternatives to permanent interment but also provide new creative and personal ways of honoring the life of the deceased. Cremated remains can be stored in beautiful containers

of all kinds, turned into jewelry, used to start a seedling that will grow into a tree, scattered at a meaningful location, and even be

turned into a coral reef or launched into space. The one significant

downside to consider is the lack of an enduring monument-with no specific burial place, future generations have no place to go to

view the final resting place of their ancestors (Roberts, 2010).

What are yaur reasons for preferring burial or cremation for yourself when you die?

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476 Chapter 10

After a death, people move through a painful period of bereavement and grief. These mourners in Syria grieve the loss of Kurdish fighters who died in clashes with the Islamic State.

although the pain may break through, causing anguish, fear, and deep sorrow and distress. In some ways, numbness may be beneficial because it permits the survivor to make funeral arrangements and carry out other psychologically difficult tasks. Typically, people pass through this stage in a few days or weeks.

In the next phase, people begin to confront the death and realtze the extent of their loss. They fully experience their grief and begin to acknowledge that the separation from the dead person will be permarent. They may su_ffer deep unhappiness or even depressiory a normal feeling in this situation. They may yeam for the dead individual. Emotions can range from impatient to lethargic. However, they also begin to view their past relation- ship with the deceased realistically, good and bad. L:r so doing, they begin to free themselves from some of the bonds that tied them to the loved one (de Vries et a1., 199[ Norton & Gino,2014).

Fina1ly, they reach the accommodation stage. They begin to pick up the pieces of their lives and to construct new identities. For instance, rather thal seeing herself as a widowed spouse, a

woman whose husband has died may come to regard herself as a single person. Still, there are moments when intense feelings of grief occur.

. Ultimately, most people emerge from grieving and live new, independent lives. They form new relationships, and some even find that coping with the death has helped them to grow as individuals. They become more self-rehant and more appreciative of life.

It is important to keep in mind that not everyone passes through the stages of grief in the same manner and in the same order. People display vast individual differences, partly because of their personalities, the nature of the relationship with the deceased, and the opportunities that are available to them for continuing their lives after the loss.

Lr fact, most bereaved people are quite resfien! experiencing strong positive emo- tions such as joy even soon after the death of a loved one. According to psychologist George Bonartno, who has sfudied bereavement extensively, humals are prepared inan evolutionary sense to move on after the death of someone close. He rejects the notion that there are fixed stages of mournhg and argues that most people move on with their lives quite effectively (Bonanno,2009; Mancini & Bonanno, 2072;McCoyd & walter,2016).

DIFFERENTIATING UNHEALTHY GRIEF FROM NORMAL GRIEF Although ideas abound about what separates normal grief from ulhealthy grief, careful research has shown that many of the assumptions that both laypersons and clinicians hold are wrong. There is no particular timetable for grieving, particularly the common notion

that grieving should be complete a year after a spouse has died.

For some people (but not all), grieving may take considerably longer than a year. And some individuals experience complicated grief (or some- t;.mes prolonged grief disorder), a type of mouming that continues unceasingly for months and years (as we discussed in the previous chapter). An estimated 15 percent of those who are bereaved suffer from complicated grief (Piper et a1.,2009; Schumel, 2009 ; Zisook & Shear, 2009).

Other people show incomplete grief, a lin- gering form of grief following a loss in which people are unable to grieve effectively. They may be unaware of how unhappy they truly atet ot they may lack societal “permission” to grieve. For example, a gay teenager who has not told his parents about his homosexuality and who su_f- fers the death of a lover may be forced to hide his grief. His inability to show his grief may make the process of grieving even more difficult.

L Research also contradicts the assumption that depression inevitably follows a

death. In fact, only 15 to 30 percent of people show relatively deep depression follow- ing the loss of a loved one (Bonanno et a1.,2002; Hens1ey,2006).

Similarly, it is often assumed that people who show little initial distress are not fac- ing up to reality, and that they are likely to have problems later. ln fact, those who show the most intense distress immediately after a death are the most apt to have adjustment di-fficulties and health problems later (Boerner, Wortmary & Bonanno,2005).

THE CONSEQUENCES OF GRIEF AND BEREAVEMENT In a sense, death is catch- ing. Evidence suggests that widowed people are particularly at risk of death. Some studies find that the risk of death can be seven times higher than normal in the first year after the death of a spouse, particularly for men and younger women. Remarriage seems to lower the risk of death, especially for widowed mery although the reasons are not clear (Martikainen & Valkonen, 1996; Aiken,2000).

From a social worker’s perspective: Why do you think the risk of death is so high for people who have recently lost a spouse? Why might remarriage lower the risk?

Bereavement is more likely to produce depression or other negative consequences if the person is already insecure, arxious, or fearful and therefore less able to cope effectively. Relationships marked by ambivalence before death are more apt to cause poor post-death outcomes than secure relationships. Highly dependent people are apt to suffer more after the death, as are those who spend a lot of time reflecting on the death and their own grief.

Bereaved people who lack social support from family, friends, or a connection to some other group, religious or otherwise, are more likely to experience feelings of loneliness, and therefore are more at risk. Finally, people who are unable to make sense of the death or find meaning in it (such as a new appreciation of life) show less

– overall adjustment (Nolen-Hoeksema, 2001; Nolen-Hoeksema & Davis, 2002; Torges, I Stewart,&Nolen-Hoeksema,2008). – The suddenness of the death also affects the course of grieving. People who unex-

pectedly lose their loved ones are less able to cope than those who could anticipate the death. In one study, people who experienced a sudden death had not fully recovered 4 years later. In part, this may be because sudden deaths are often the result of vio- lence, which occurs more frequently among younger individuals (Burton, Haley, & Small, 2006;De Leo et a1.,201,4).

As we noted previously, children may need special help understanding and mourning the death of someone they love. (See the Becoming an lnformed Consumer of Deoelopmentbox.)

Death and Dying 477

Social networking sites like Facebook provide a means for public grieving.

478 Chapter 10

Becoming an lnformed Consumer of Development Helping a Ghild Cope With Grief Because of their limited understanding of death, younger children need special help in coping with grief. Among the strategies that can help are the following:

o Be honest. Don’t say that the person is “sleeping” or “on a long trip.” Use age-appropriate language to tell the truth. Gently but cleady point out that death is final and universal.

o Encourage expressions of grief. Don’t tell children not to cry or show their feelings. lnstead, tell them that it is understandable to feel terrible, and that they may always miss the deceased. Encourage them to draw a picture, write a letter, or express their feelings some other way.

Reassure children that they are not to blame. Children sometimes attribute a loved one’s death to their own behavior-if they had not misbehaved, they mistakenly reason, the person would not have died.

Understand that children’s grief may surface in unanticipated ways. Children may show little initial grief but later may become upset for no apparent reason or revert to behaviors like thumbsucking or wanting to sleep with their parents.

Children may respond to books for young people about death. One especially effective book is When Dinosaurs Dle by Laurie Krasny Brown and Marc Brown.

Review, Check, and Apply Review LO 10.7 Analyze the cultural meaning of funeral rites in

Western and other cultures.

After a death, most cultures prescribe some sort of funeral ritual to honor the passing of a community mem- ber. Funeral rites play a significant role in helping people acknowledge the death of a loved one, recognize their own mortality, and proceed with their lives.

LO 10.8 Describe how survivors react to and cope with death.

Bereavement refers to the loss of a loved one; grief refers , to the emotional response to that loss. For many people, – grief passes through denial, sorrow and accommoda- tion stages. Common assumptions about the nature and duration ol “normal” grief have been shown to be erro- neous. The length and intensity of the mourning period vary widely.

Check Yourself 1. Modem American funerals are generally grandiose and

expensive primarily because _. a. American social norms virtually mandate that a fu-

neral be complex and costly b. American survivors are usually motivated to pro-

vide the best for their loved ones c. the typical American funeral rite involves large

numbers of mourners d. American survivors typically wish to display their

wealth and social standing 2. One of the main purposes of the funeral ritual across

cultures is to

a. encourage survivors to look more favorably on the prospect of dying

b. cheer the dying person with the prospect of a grand sendoff

c. offer survivors an opportunity to share their grief d. enable the dying person to express final thoughts

in writing or on tape In the final stage of grief, people tend to a. pick up the pieces of their lives and construct new

identities b. cycle back to numbness if the pain is too severe c. avoid the realify of the situation through denial d. suffer deep unhappiness and evenrdepression Bereaved people who lack are more likely to experience loneliness and are at greater risk for nega- tive post-death outcomes.

a. ambivalence b. ritirals c. independence d. social support

4.

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