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.
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.
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.
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.
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.
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.
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.
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.
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 ).
Applying What We Know Discussing Concerns About Death with Children and Adolescents
Take the lead.
Be alert to the child’s or adolescent’s nonverbal behaviors, bringing up the subject sympathetically, especially after a death-related situation has occurred.
Give full attention to the child or adolescent and the feelings underlying his or her words. When adults pretend to listen while thinking about other things, young people quickly pick up this sign of indifference and withdraw their confidence.
Accept the child’s or adolescent’s emotions as real and important; avoid being judgmental. For example, paraphrase sentiments you detect, such as “I see you’re very puzzled about that. Let’s talk more about it.”
Provide factual information in a candid, culturally sensitive fashion.
For children who do not yet have a realistic understanding of death, provide simple, direct, and accurate explanations. Avoid misleading statements, such as “went for a rest” or “sleeping.” Do not contradict the young person’s religious beliefs. Rather, assist him or her in blending biological with religious knowledge.
Engage in joint problem solving.
When questions do not have easy answers, such as “Where does your soul go when you die?,” convey your belief in the young person’s worth by indicating that you do not want to impose a point of view but rather to help him or her come to personally satisfying conclusions. To questions you cannot answer, say, “I don’t know.” Such honesty shows a willingness to generate and evaluate solutions jointly.
This teenager knows that death happens to everyone and can occur at any time, but his risk taking suggests otherwise. Wrapped up in their own uniqueness, adolescents may conclude they are beyond reach of death.
Enhancing Adolescents’ Understanding.
By encouraging adolescents to discuss concerns about death, adults can help them build a bridge between death as a logical concept and their personal experiences. In Chapter 12 , we noted that teenagers with authoritative parents are more likely to turn to adults for guidance on important issues. But the majority of parents feel uncomfortable about addressing the topic of death and inadequately prepared to do so (Talwar, 2011 ).
Taking up adolescents’ thoughts and feelings about death can be part of everyday conversation, sparked by a news report or the death of an acquaintance. Parents can capitalize on these moments to express their own views, listen closely, accept teenagers’ feelings, and correct misconceptions. Such mutual sharing deepens bonds of love and provides the basis for further exploration when the need arises. Applying What We Know above suggests ways to discuss concerns about death with children and adolescents.
In early adulthood, many people brush aside thoughts of death (Corr & Corr, 2013 ). This avoidance may be prompted by death anxiety, which we will consider in the next section. Alternatively, it may be due to relative lack of interest in death-related issues, given that young adults typically do not know very many people who have died and (like adolescents) think of their own death as a long way off.
In Chapters 15 and 16 , we described midlife as a time of stock taking in which people begin to view the lifespan in terms of time left to live and focus on tasks to be completed. Middleaged people no longer have a vague conception of their own death. They know that in the not-too-distant future, it will be their turn to grow old and die.
In late adulthood, adults think and talk more about death because it is much closer. Increasing evidence of mortality comes from physical changes, higher rates of illness and disability, and loss of relatives and friends (see Chapter 17 ). Compared with middle-aged people, older adults spend more time pondering the process and circumstances of dying than the state of death (Kastenbaum, 2012 ). Nearness to death seems to lead to a practical concern with how and when it might happen.
Finally, although we have traced overall age-related changes, large individual differences exist. Some adults focus on life and death issues early on; others are less reflective, moving into old age without giving these matters much attention.
TAKE A MOMENT… As you read the following statements, do you find yourself agreeing, disagreeing, or reacting neutrally?
· “Never feeling anything again after I die upsets me.”
· “I hate the idea that I will be helpless after I die.”
· “The total isolation of death is frightening to me.”
· “The feeling that I will be missing out on so much after I die disturbs me.” (Thorson & Powell, 1994 , pp. 38–39)
Items like these appear on questionnaires used to measure death anxiety —fear and apprehension of death. Even people who clearly accept the reality of death may fear it.
What predicts whether thoughts of our own demise trigger intense distress, relative calm, or something in between? To answer this question, researchers measure both general death anxiety and specific factors—fear of no longer existing, loss of control, a painful death, decay of the body, separation from loved ones, and the unknown (Neimeyer, 1994 ). Findings reveal large individual and cultural variations in aspects of death that arouse fear. For example, in a study of devout Islamic Saudi Arabians, certain factors that appear repeatedly in the responses of Westerners, such as fear of the body decaying and of the unknown, were entirely absent (Long, 1985 ).
Among Westerners, spirituality—a sense of life’s meaning—seems to be more important than religious commitment in limiting death anxiety (Ardelt, 2003 ; Routledge & Juhl, 2010 ). People with a well-developed personal philosophy of death are also less fearful. And in two studies, Christian older adults whose religious beliefs and behavior were contradictory—who believed in a rewarding afterlife but rarely prayed or attended services, or who regularly prayed and attended services but doubted the existence of an afterlife—reported higher death anxiety (Wink, 2006 ; Wink & Scott, 2005 ). Together, these findings indicate that both firmness of beliefs and consistency between beliefs and practices, rather than religiousness itself, reduce fear of death. Death anxiety is especially low among adults with deep faith in some form of higher force or being—faith that may or may not be influenced by religion (Cicirelli, 2002 ; Neimeyer et al., 2011 ).
TAKE A MOMENT… From what you have learned about adult psychosocial development, how do you think death anxiety might change with age? If you predicted it would decline, reaching its lowest level in late adulthood, you are correct (see Figure 19.1 ) (Russac et al., 2007 ; Tomer, Eliason, & Smith, 2000 ). This age-related drop has been found in many cultures and ethnic groups. Recall from Chapter 18 that older adults are especially effective at regulating negative emotion. As a result, most cope with anxieties, including fear of death, effectively. Furthermore, attainment of ego integrity reduces death anxiety. Older people have had more time to develop symbolic immortality—the belief that one will continue to live on through one’s children or through one’s work or personal influence (see Chapter 16 , page 533 ).
As long as it is not overly intense, death anxiety can motivate people to strive to live up to internalized cultural values—for example, to be kind to others and to work hard to reach one’s goals. These efforts increase adults’ sense of self-esteem, self-efficacy, and purpose in life—powerful antidotes against the terrifying thought that, in the overall scheme of things, they “are no more important or enduring than any individual potato, pineapple, or porcupine” (Fry, 2003 ; Pyszczynski et al., 2004 , p. 436). In a study of Israeli adults, symbolic immortality predicted reduced fear of death, especially among those with secure attachments (Florian & Mikulincer, 1998 ). Gratifying, close interpersonal ties seem to help people feel worthwhile and forge a sense of symbolic immortality. And people who view death as an opportunity to pass a legacy to future generations are less likely to fear it (Cicirelli, 2001 ; Mikulincer, Florian, & Hirschberger, 2003 ).
FIGURE 19.1 Relationship of age and gender to death anxiety.
In this study comparing young and older adults, death anxiety declined with age. Women expressed greater fear of death than men. Many other studies show similar findings.
(Adapted from Tomer, Eliason, & Smith, 2000.)
Regardless of age, in both Eastern and Western cultures, women appear more anxious about death than men do (refer again to Figure 19.1 ) (Madnawat & Kachhawa, 2007 ; Tomer, Eliason, & Smith, 2000 ). Women may be more likely to admit and men more likely to avoid troubled feelings about mortality—an explanation consistent with females’ greater emotional expressiveness throughout the lifespan. Furthermore, in one study, women showed a temporary rise in death anxiety in their early fifties not seen in men (Russac et al., 2007 ). Perhaps menopause, in marking the end of reproductive capacity, provides women with a stark reminder of their mortality.
Experiencing some anxiety about death is normal and adaptive. But like other fears, very intense death anxiety can undermine effective adjustment. Although physical health in adulthood is not related to death anxiety, mental health clearly is. In cultures as different as China and the United States, people who are depressed or generally anxious are likely to have more severe death concerns (Neimeyer & Van Brunt, 1995 ; Wu, Tang, & Kwok, 2002 ). In contrast, people who are good at inhibition (keeping their minds from straying to irrelevant thoughts) and at emotional self-regulation report less death anxiety (Gailliot, Schmeichel, & Baumeister, 2006 ). They are better able to manage their concerns about death.
Death anxiety is largely limited to adolescence and adulthood. Children rarely display it unless they live in high-crime neighborhoods or war-torn areas where they are in constant danger (see the Cultural Influences box on the impact of ethnic and political violence on children on page 533 in Chapter 10 ). Terminally ill children are also at risk for high death anxiety. Compared with other same-age patients, children with cancer express more destructive thoughts and negative feelings about death (Malone, 1982 ). For those whose parents make the mistake of not telling them they are going to die, loneliness and death anxiety can be extreme (O’Halloran & Altmaier, 1996 ).
Death anxiety declines in old age, and this 81-year-old from the Netherlands seems to have very little! She had this coffin made to serve as a bookshelf because, she said, “It’s a waste to use a coffin just for burial.” The pillow on the top will support her head after she dies.
REVIEW Explain why older adults think and talk more about death than do younger people but feel less anxious about it.
CONNECT How do advances in cognition contribute to adolescents’ concepts of death? (Refer to Chapter 11 , pages 382 – 383 and 386 – 387 .)
APPLY When 4-year-old Chloe’s aunt died, Chloe asked, “Where’s Aunt Susie?” Her mother explained, “Aunt Susie is taking a long, peaceful sleep.” For the next two weeks, Chloe refused to go to bed, and, when finally coaxed into her room, lay awake for hours. What is the likely reason for Chloe’s behavior? What might be a better way of answering her question?
REFLECT Ask members of earlier generations in your family about their childhood experiences with death. Compare these to your own experiences. What differences did you find, and how would you explain them?
image12 Thinking and Emotions of Dying People
In the year before her death, Sofie did everything possible to surmount her illness. In between treatments to control the cancer, she tested her strength. She continued to teach high school, traveled to visit her children, cultivated a garden, and took weekend excursions with Philip. Hope pervaded Sofie’s approach to her deadly condition, and she spoke often about the disease—so much so that her friends wondered how she could confront it so directly.
As Sofie deteriorated physically, she moved in and out of various mental and emotional states. She was frustrated, and at times angry and depressed, about her inability to keep on fighting. I recall her lamenting anxiously on a day when she was in pain, “I’m sick, so very sick! I’m trying so hard, but I can’t keep on.” Once she asked when my husband and I, who were newly married, would have children. “If only I could live long enough to hold them in my arms!” she cried. In the last week, she appeared tired but free of struggle. Occasionally, she spoke of her love for us and commented on the beauty of the hills outside her window. But mostly, she looked and listened, rather than actively participating in conversation. One afternoon, she fell permanently unconscious.
Do Stages of Dying Exist?
As dying people move closer to death, are their reactions predictable? Do they go through a series of changes that are the same for everyone, or are their thoughts and feelings unique?
Although her theory has been heavily criticized, Elisabeth Kübler-Ross ( 1969 ) is credited with awakening society’s sensitivity to the psychological needs of dying patients. From interviews with over 200 terminally ill people, she devised a theory of five typical responses—initially proposed as stages—to the prospect of death and the ordeal of dying:
· ● Denial. On learning of the terminal illness, the person denies its seriousness—refusing to accept the diagnosis, avoiding discussions with doctors and family members—to escape from the prospect of death. While the patient still feels reasonably well, denial is self-protective, allowing the individual to deal with the illness at his or her own pace. Most people move in and out of denial, making great plans one day and, the next, acknowledging that death is near (Rousseau, 2000 ). Although denial can reduce emotional distress, enabling patients to absorb the news while addressing unfinished life tasks, Kübler-Ross recommends that family members and health professionals not prolong denial by distorting the truth about the person’s condition. In doing so, they prevent the dying person from adjusting to impending death and hinder necessary arrangements—for social support, for bringing closure to relationships, and for making decisions about medical interventions.
· ● Anger. Recognition that time is short promotes anger at having to die without having had a chance to do all one wants to do. Family members and health professionals may be targets of the patient’s rage, resentment, and envy. Even so, they must tolerate rather than lash out at the patient’s behavior, recognizing that the underlying cause is the unfairness of death.
· ● Bargaining. Realizing the inevitability of death, the terminally ill person attempts to bargain for extra time—a deal he or she may try to strike with family members, friends, doctors, nurses, or God. The best response to these efforts to sustain hope is to listen sympathetically, as one doctor did to the pleas of a young AIDS-stricken father, whose wish was to live long enough to dance with his daughter—then 8 years old—at her wedding (Selwyn, 1996 ). Sometimes, bargains are altruistic acts. Tony, a 15-year-old leukemia patient, expressed to his mother:
· I don’t want to die yet. Gerry [youngest brother] is only 3 and not old enough to understand. If I could live just one more year, I could explain it to him myself and he will understand. Three is just too young. (Komp, 1996 , pp. 69–70)
· Although many dying patients’ bargains are unrealistic and impossible to fulfill, Tony lived for exactly one year—a gift to those who survived him.
· ● Depression. When denial, anger, and bargaining fail to postpone the illness, the person becomes depressed about the loss of his or her life—a response that intensifies suffering. Unfortunately, many experiences associated with dying, including physical and mental deterioration, pain, lack of control, certain medications, and being hooked to machines, contribute to despondency. Compassionate medical and psychological treatment, aimed at clarifying and alleviating the patients concerns, can limit hopelessness and despair.
· ● Acceptance. Most people who reach acceptance, a state of peace and quiet about upcoming death, do so only in the last weeks or days. The weakened patient yields to death, disengaging from all but a few family members, friends, and caregivers. Some dying people, in an attempt to pull away from all they have loved, withdraw into themselves for long periods of time. “I’m getting my mental and emotional house in order,” one patient explained (Samarel, 1995 , p. 101).
Evaluation of Kübler-Ross’s Theory
Kübler-Ross cautioned that her five stages should not be viewed as a fixed sequence and that not all people display each response. But her use of the term stages has made it easy for her theory to be interpreted simplistically, as the series of steps a “normal” dying person follows. Some health professionals, unaware of diversity in dying experiences, have insensitively tried to push patients through Kübler-Ross’s sequence. And caregivers, through callousness or ignorance, can too easily dismiss a dying patient’s legitimate complaints about treatment as “just what you would expect in Stage 2” (Corr & Corr, 2013 ; Kastenbaum, 2012 ).
Research confirms that, in line with Kübler-Ross’s observations, dying people are more likely to display denial after learning of their condition and acceptance shortly before death (Kalish, 1985 ). But rather than stages, the five reactions Kübler-Ross observed are best viewed as coping strategies that anyone may call on in the face of threat. Furthermore, dying people react in many additional ways—for example, through efforts to conquer the disease, as Sofie displayed; through an overwhelming need to control what happens to their bodies during the dying process; through acts of generosity and caring, as seen in Tony’s concern for his 3-year-old brother, Gerry; and through shifting their focus to living in a fulfilling way—“seizing the day” because so little time is left (Silverman, 2004 ; Wright, 2003 ).
As these examples suggest, the most serious drawback to Kübler-Ross’s theory is that it looks at dying patients’ thoughts and feelings outside the contexts that give them meaning. As we will see next, people’s adaptations to impending death can be understood only in relation to the multidimensional influences that have contributed to their life course and that also shape this final phase.
Contextual Influences on Adaptations to Dying
From the moment of her diagnosis, Sofie spent little time denying the deadliness of her disease. Instead, she met it head on, just as she had dealt with other challenges of life. Her impassioned plea to hold her grandchildren in her arms was less a bargain with fate than an expression of profound defeat that on the threshold of late adulthood, she would not live to enjoy its rewards. At the end, her quiet, withdrawn demeanor was probably resignation, not acceptance. All her life, she had been a person with a fighting spirit, unwilling to give in to challenge.
On September 18, 2007, Carnegie Mellon University computer science professor Randy Pausch, diagnosed with pancreatic cancer, gave his final lecture to a packed house. His message, which focused on achieving one’s childhood dreams and enabling the dreams of others, can be viewed at www.cmu.edu/homepage/multimedia/randy-pausch-lecture.shtml . He died nine months later, at age 47, having approached his death in a way that suited his pattern of living and deepest values.
· According to recent theorists, a single strategy, such as acceptance, is not best for every dying patient. Rather, an appropriate death is one that makes sense in terms of the individual’s pattern of living and values and, at the same time, preserves or restores significant relationships and is as free of suffering as possible (Worden, 2000 ). When asked about a “good death,” most patients are clear about what, ideally, they would like to happen. They mention the following goals:
· ● Maintaining a sense of identity, or inner continuity with one’s past
· ● Clarifying the meaning of one’s life and death
· ● Maintaining and enhancing relationships
· ● Achieving a sense of control over the time that remains
· ● Confronting and preparing for death (Goldsteen et al., 2006 ; Kleespies, 2004 ; Proulx & Jacelon, 2004 )
Research reveals that biological, psychological, and social and cultural forces affect people’s coping with dying and, therefore, the extent to which they attain these goals. Let’s look at some important influences on how people fare.
Nature of the Disease.
The course of the illness and its symptoms affect the dying person’s reactions. For example, the extended nature of Sofie’s illness and her doctor’s initial optimism about achieving a remission undoubtedly contributed to her attempts to try to conquer the disease. During the final month, when cancer had spread to Sofie’s lungs and she could not catch her breath, she was agitated and fearful until oxygen and medication relieved her uncertainty about being able to breathe. In contrast, Nicholas’s weakened heart and failing kidneys so depleted his strength that he responded only with passivity.
Because of the toll of the disease, about one-third of cancer patients experience severe depression—reactions distinct from the sadness, grief, and worry that typically accompany the dying process. Profound depression amplifies pain, impairs the immune response, interferes with the patient’s capacity for pleasure, meaning, and connection, and is associated with poorer survival (Satin, Linden, & Phillips, 2009 ; Williams & Dale, 2006 ). It therefore requires immediate treatment. Among the most successful approaches are meaning-focused life review (see page 606 in Chapter 18 ), medical control of pain, and advance care planning with the patient that ensures that his or her end-of-life wishes are known and respected (Rosenstein, 2011 ).
Personality and Coping Style.
Understanding the way individuals view stressful life events and have coped with them in the past helps us appreciate the way they manage the dying process. In a study in which terminally ill patients discussed their images of dying, responses varied greatly. For example,
· ● Beth regarded dying as imprisonment: “I felt like the clock started ticking … like the future has suddenly been taken … In a way, I feel like I’m already dead.”
· ● To Faith, dying was a mandate to live ever more fully: “I have a saying: … ‘You’re not ready to live until you’re ready to die.’ … It never meant much to me until I … looked death in the eye, and now I’m living. … This life is a lot better than the one before.”
· ● Dawn viewed dying as part of life’s journey: “I learned all about my disease. … I would read, read, read … I wanted to know as much as I can about it, and I don’t think hiding … behind the door … could help me at all. And, I realized for the first time in my life—really, really, really realized that I could handle anything.”
· ● Patty approached dying as an experience to be transformed so as to make it more bearable: “I am an avid, rabid fan of Star Trek, a trekkie like there never has been.… I watch it to the point that I’ve memorized it.… [In my mind, I play the various characters so] I’m not [always] thinking about cancer or dying.… I think that’s how I get through it.” (Wright, 2003 , pp. 442–444, 447)
Each patient’s view of dying helps explain her responses to worsening illness. Poorly adjusted individuals—those with conflict-ridden relationships and many disappointments in life—are usually more distressed (Kastenbaum, 2012 ).
Family Members’ and Health Professionals’ Behavior.
Earlier we noted that a candid approach, in which everyone close to and caring for the dying person acknowledges the terminal illness, is best. Yet this also introduces the burden of participating in the work of dying with the patient—bringing relationships to closure, reflecting on life, and dealing with fears and regrets.
A doctor listens patiently to the concerns of a terminally ill 94-year-old. Through sensitive, open communication, health professionals help dying people prepare for death by bringing relationships to closure, reflecting on life, and dealing with fears and regrets.
People who find it hard to engage in these tasks may pretend that the disease is not as bad as it is. In patients inclined toward denial, a “game” can be set in motion in which participants are aware that the patient is dying but act as though it were not so. Though this game softens psychological pain for the moment, it makes dying much more difficult. Besides impeding communication, it frequently leads to futile medical interventions, in which the patient has little understanding of what is happening and is subjected to great physical and emotional suffering. One attending physician provided this account of a cancer patient’s death:
· The problem was that she had a young husband and parents who were pretty much in complete denial. We were trying to be aggressive up to the end. To the point that we actually hung a new form of chemotherapy about four hours before she died, even though everybody knew except her immediate family that she was going to die within the next four to eight hours. (Jackson et al., 2005 , p. 653)
At other times, the patient suspects what he or she has not been told. In one instance, a terminally ill child flew into a rage because his doctor and a nurse spoke to him in ways that denied the fact that he would not grow up. Trying to get the child to cooperate with a medical procedure, the doctor said,
· “I thought you would understand, Sandy. You told me once you wanted to be a doctor.”
· He screamed back, “I’m not going to be anything!” and threw an empty syringe at her.
· The nurse standing nearby asked, “What are you going to be?”
· “A ghost,” said Sandy, and turned away from them. (Bluebond-Langner, 1977 , p. 59)
The behavior of health professionals impeded Sandy’s efforts to form a realistic time perspective and intensified his anger at the injustice of his premature death.
When doctors do want to inform patients of their prognosis, they may encounter resistance, especially within certain ethnic groups. Withholding information is common in Southern and Eastern Europe, Central and South America, much of Asia, and the Middle East. Japanese terminally ill cancer patients are seldom told the truth about their condition, partly because dying disrupts important interdependent relationships (Yamamoto, 2004 ). Many Mexican Americans and Korean Americans believe that informing patients is wrong and will hasten death (Blackhall et al., 1995 , 2001 ). In these instances, providing information is complex. When a family insists that a patient not be told, the doctor can first offer information to the patient and then, if the patient refuses, ask who should receive information and make health-care decisions (Zane & Yeh, 2002 ). The patient’s preference can be honored and reassessed at regular intervals.
Care of the terminally ill is demanding and stressful. Nurses who respond effectively to the psychological needs of dying patients and their families benefit from inservice training aimed at strengthening interpersonal skills, day-to-day mutual support among staff, and development of a personal philosophy of living and dying (Efstathiou & Clifford, 2011 ; Hebert, Moore, & Rooney, 2011 ; Morris, 2011 . Extensive experience working with dying patients in a sensitive, supportive environment is associated with low death anxiety, perhaps because such caregivers observe their patients’ distress decline and, thus, gradually learn that their own previous fears are less founded (Bluck et al., 2008 ; Peters et al., 2013 ).
Social support from family members also affects adaptation to dying. Dying patients who feel they have much unfinished business to attend to are more anxious about impending death. But family contact reduces their sense of urgency to prolong life (Mutran et al., 1997 ; Zimmerman, 2012 ). Perhaps it permits patients to work through at least some incomplete tasks.
Effective communication with the dying person is honest, fostering a trusting relationship, yet also oriented toward maintaining hope. Many dying patients move through a hope trajectory—at first, hope for a cure; later, hope for prolonging life; and finally, hope for a peaceful death with as few burdens as possible (Fanslow, 1981 ). Once patients near death stop expressing hope, those close to them must accept this. Family members who find letting go very difficult may benefit from expert guidance. Applying What We Know on page 650 offers suggestions for communicating with the dying.
Spirituality, Religion, and Culture.
Earlier we noted that a sense of spirituality reduces fear of death. Research indicates that this is as true for the dying as for people in general. Terminally ill patients who score higher in spiritual well-being (belief in life’s meaning) experience less end-of-life despair (desire for a hastened death and suicidal thoughts) (McClain, Rosenfeld, & Breitbard, 2003 ; McClain-Jacobson et al., 2004 ). As one experienced nurse commented,
· At the end, those [patients] with a faith—it doesn’t really matter in what, but a faith in something—find it easier. Not always, but as a rule. I’ve seen people with faith panic and I’ve seen those without faith accept it [death]. But, as a rule, it’s much easier for those with faith. (Samarel, 1991 , pp. 64–65)
Applying What We Know Communicating with Dying People
Be truthful about the diagnosis and course of the disease.
Be honest about what the future is likely to hold, thereby permitting the dying person to bring closure to his or her life by expressing sentiments and wishes and participating in decisions about treatment.
Listen perceptively and acknowledge feelings.
Be truly present, focusing full attention on what the dying person has to say and accepting the patient’s feelings. Patients who sense another’s presence and concern are more likely to relax physically and emotionally and express themselves.
Maintain realistic hope.
Assist the dying person in maintaining hope by encouraging him or her to focus on a realistic goal that might yet be achieved—for example, resolution of a troubled relationship or special moments with a loved one. Knowing the dying person’s hope, family members and health professionals can often help fulfill it.
Assist in the final transition.
Assure the dying person that he or she is not alone, offering a sympathetic touch, a caring thought, or just a calm presence. Some patients who struggle may benefit from being given permission to die—the message that giving up and letting go is all right.
Source: Lugton, 2002.
Vastly different cultural beliefs, guided by religious ideas, also shape people’s dying experiences:
· ● Buddhism, widely practiced in China, India, and Southeast Asia, fosters acceptance of death. By reading sutras (teachings of Buddha) to the dying person to calm the mind and emphasizing that dying leads to rebirth in a heaven of peace and relaxation, Buddhists believe that it is possible to reach Nirvana, a state beyond the world of suffering (Kubotera, 2004 ; Yeung, 1996 ).
· ● In many Native-American groups, death is met with stoic self-control, an approach taught at an early age through stories that emphasize a circular, rather than linear, relationship between life and death and the importance of making way for others (Cox, 2002 ).
· ● For African Americans, a dying loved one signals a crisis that unites family members in caregiving (Crawley et al., 2000 ; Jenkins et al., 2005 ). The terminally ill person remains an active and vital force within the family until he or she can no longer carry out this role—an attitude of respect that undoubtedly eases the dying process.
· ● Among the Maori of New Zealand, relatives and friends gather around the dying person to give spiritual strength and comfort. Older adults, clergy, and other experts in tribal customs conduct a karakia ceremony, in which they recite prayers asking for peace, mercy, and guidance from the creator. After the ceremony, the patient is encouraged to discuss important matters with those closest to her—giving away of personal belongings, directions for interment, and completion of other unfinished tasks (Ngata, 2004 ).
In sum, dying prompts a multitude of thoughts, emotions, and coping strategies. Which ones are emphasized depends on a wide array of contextual influences. A vital assumption of the lifespan perspective—that development is multidimensional and multidirectional—is just as relevant to this final phase as to each earlier period.
image15 A Place to Die
Whereas in the past most deaths occurred at home, in the United States today about 40 percent take place in hospitals and another 20 percent in long-term care facilities, mostly nursing homes (Centers for Disease Control and Prevention, 2013 ). In the large, impersonal hospital environment, meeting the human needs of dying patients and their families is secondary, not because professionals lack concern, but because the work to be done focuses on saving lives. A dying patient represents a failure.
In the 1960s, a death awareness movement arose as a reaction to hospitals’ death-avoiding practices—attachment of complicated machinery to patients with no chance of survival and avoidance of communication with dying patients. This movement soon led to medical care better suited to the needs of dying people and also to hospice programs, which have spread to many countries in the industrialized world. Let’s visit each of these settings for dying.
Had Sofie and Nicholas been asked where they wanted to die, undoubtedly each would have responded, “At home”—the preference of 80 to 90 percent of Americans (NHPCO, 2005 ; O’Connor, 2003 ). The reason is clear: The home offers an atmosphere of intimacy and loving care in which the terminally ill person is unlikely to feel abandoned or humiliated by physical decline or dependence on others.
However, only about one-fourth of Americans experience home death (Centers for Disease Control and Prevention, 2013 ). And it is important not to romanticize dying at home. Because of dramatic improvements in medicine, dying people tend to be sicker or much older than in the past. Consequently, their bodies may be extremely frail, making ordinary activities—eating, sleeping, taking a pill, toileting, and bathing—major ordeals for informal caregivers (Singer et al., 2005 ). Health problems of aging spouses, work and other responsibilities of family members, and the physical, psychological, and financial strain of providing home care can make it difficult to honor a terminally ill person’s wish to die at home.
For many people, the chance to be with the dying person until the very end is a rewarding tradeoff for the high demands of caregiving. But to make dying at home feasible, adequate support for the caregiver is essential (Karlsson & Berggren, 2011 ; Newbury, 2011 ). A specially trained home health aide is usually necessary—a service (as we will see shortly) that hospice programs have made more accessible. Still, when family relationships are conflict-ridden, a dying patient introduces additional family strains and is subjected to increased distress, negating the benefits of home death. Furthermore, even with professional help, most homes are poorly equipped to handle the medical and comfort-care needs of the dying. Hospital-based equipment and technical support often must be transported to the home.
For all these reasons, older adults—although they view home as their ideal place to die—express concerns about quality of care, about burdening family and friends, and about the need for adult children to engage in unduly intimate caregiving tasks (Gott et al., 2004 ). And 10 months after a home death, family members continue to report more psychological stress than do family members whose loved one died elsewhere (Addington-Hall, 2000 ).
Hospital dying takes many forms. Each is affected by the physical state of the dying person, the hospital unit in which it takes place, and the goal and quality of care.
Sudden deaths, due to injury or critical illness, typically occur in emergency rooms. Doctors and nurses must evaluate the problem and take action quickly. Little time is available for contact with family members. When staff break the news of death in a sympathetic manner and provide explanations, family members are grateful. Otherwise, feelings of anger, frustration, and confusion can add to their grief (Walsh & McGoldrick, 2004 ). Crisis intervention services are needed to help survivors cope with sudden death.
Dying in intensive care is a depersonalizing experience unique to technologically sophisticated societies. In such settings, medical responses supersede privacy and communication with patient and family.
Nicholas died on an intensive care ward focused on preventing death in patients whose condition can worsen quickly. Privacy and communication with the family were secondary to monitoring his condition. To prevent disruption of nurses’ activities, Giselle and Sasha could be at Nicholas’s side only at scheduled times. Dying in intensive care—an experience unique to technologically sophisticated societies—is especially depersonalizing for patients like Nicholas, who linger between life and death while hooked to machines often for months.
Cancer patients, who account for most cases of prolonged dying, typically die in general or specialized cancer care hospital units. When hospitalized for a long time, they reach out for help with physical and emotional needs, too often with mixed success. In these hospital settings, as in intensive care, a conflict of values is apparent (Costello, 2006 ). The tasks associated with dying must be performed efficiently so that all patients can be served and health professionals are not drained emotionally by repeated attachments and separations.
Although hospital comprehensive treatment programs aimed at easing physical, emotional, and spiritual suffering at the end of life have increased steadily over the past decade, one-third of hospitals still do not have them (Center to Advance Palliative Care, 2012 ). And because just 16 percent of U.S. and Canadian medical schools offer even a single pain-focused course (usually an elective), few doctors and nurses are specially trained in managing pain in chronically ill and dying people (Mezei & Murinson, 2011 ). At present, many people die in painful, frightening, and depersonalizing hospital conditions, without their wishes being met.
Though deaths in U.S. nursing homes—mostly elderly patients—are common, care emphasizes rehabilitation rather than high-quality terminal care. Too often, residents’ end-of-life preferences are not gathered and recorded in medical records. The few studies that have addressed what it is like to die in nursing homes concur that many patients suffer from inattention to their emotional and spiritual needs and from high levels of untreated pain (Massachusetts Expert Panel on End of Life Care, 2010 ).
In one investigation, researchers conducted in-depth interviews with a nationally representative sample of nearly 600 family members whose loved one had spent at least 48 hours of the final month of life in a nursing home. Respondents frequently mentioned unsatisfactory physical care of the dying patient, difficulty obtaining basic information from staff members on the patient’s condition, staff members’ lack of compassion and attentiveness to the patient’s medical deterioration, and physicians who were “missing in action”—rarely seen in the nursing home (Wetle et al., 2005 ; Shield et al., 2010 ). Relatives often felt the need to advocate for their dying relative, though their efforts met with limited success—circumstances that greatly increased both patient and family distress.
The hospice approach—which we consider next—aims to reduce profound caregiving failures in hospitals and nursing homes. When combined with hospice, nursing home care of the dying improves greatly in pain management, emotional and spiritual support, and family satisfaction. But referrals of dying nursing-home residents to hospice, though increasing, are often not made—or made too late to be useful (Zheng et al., 2012 ).
The Hospice Approach
In medieval times, a hospice was a place where travelers could find rest and shelter. In the nineteenth and twentieth centuries, the word referred to homes for dying patients. Today, hospice is not a place but a comprehensive program of support services for terminally ill people and their families. It aims to provide a caring community sensitive to the dying person’s needs so patients and family members can prepare for death in ways that are satisfying to them. Quality of life is central to the hospice approach, which includes these main features:
· ● The patient and family as a unit of care
· ● Emphasis on meeting the patient’s physical, emotional, social, and spiritual needs, including controlling pain, retaining dignity and self-worth, and feeling cared for and loved
· ● Care provided by an interdisciplinary team: a doctor, a nurse or home health aide, a chaplain, a counselor or social worker, and a trained volunteer
· ● The patient kept at home or in an inpatient setting with a homelike atmosphere where coordination of care is possible
· ● Focus on protecting the quality of remaining life with palliative , or comfort , care that relieves pain and other symptoms (nausea, breathing difficulties, insomnia, and depression) rather than prolonging life
· ● In addition to regularly scheduled home care visits, on-call services available 24 hours a day, 7 days a week
· ● Follow-up bereavement services offered to families in the year after a death
A son and his dying mother share recollections as he shows her a photograph of her long-ago graduation. By creating opportunities for unpressured closeness and connection, hospice care enhances dying patients’ quality of life rather than extending life.
Because hospice care is a philosophy, not a facility, it can be applied in diverse ways. In Great Britain, care in a special hospice inpatient unit, sometimes associated with a hospital, is typical. In the United States, home care has been emphasized: About 42 percent of hospice patients die in their own home, 26 percent in a hospice inpatient unit, 18 percent in a nursing home, 7 percent in another type of residential setting, and 7 percent in a typical hospital room (NHPCO, 2012 ).
But hospice programs everywhere have expanded to include a continuum of care, from home to inpatient options, including hospitals and nursing homes. Central to the hospice approach is that the dying person and his or her family be offered choices that guarantee an appropriate death. Some programs offer hospice day care, which enables caregivers to continue working or be relieved of the stresses of long-term care (Kernohan et al., 2006 ). Contact with others facing terminal illness is a supportive byproduct of many hospice arrangements. And to find out about a comforting musical intervention for patients near death, consult the Biology and Environment box on the following page.
LOOK AND LISTEN
Contact a nearby hospice program, and find out about its varied ways it delivers its comprehensive services to meet the needs of dying patients and their families.
Biology and Environment Music as Palliative Care for Dying Patients
When Peter visits 82-year-old Stuart to play the harp, Stuart reports being transported to an idyllic place with water, children, and trees—far from the lung tumors that will soon take his life. “When Peter plays for me, … I am no longer frightened,” Stuart says.
Peter is a specialist in music thanatology, an emerging specialty in music therapy that focuses on providing palliative care to the dying through music. He uses his harp, and sometimes his voice, to induce calm and give solace to the dying, their families, and their caregivers. Peter applies music systematically—matching it to each patient’s breathing patterns and other responses, delivering different sounds to uplift or comfort, depending on his assessment of the patient’s moment-by-moment needs.
Chaplains and counselors informally report that after music vigils, patients’ conversations indicate that they more easily come to terms with their own death (Fyfe, 2006 ). And in a study of 65 dying patients in which pre- and postintervention physiological measures were compared, music vigils averaging an hour in length resulted in decreased agitation and wakefulness and slower, deeper, less effortful breathing (Freeman et al., 2006 ). These physiological benefits extended to patients who, on the basis of their behavior, were clearly in pain.
Why is music effective in easing the distress of those who are dying? In patients close to death, hearing typically functions longer than other senses. Thus, responsiveness to music may persist until the individual’s final moments. Besides reducing anxiety, music can, in some instances, enhance the effects of medication administered to control pain (Starr, 1999 ). For these reasons, music vigils may be an especially effective end-of-life therapy.
Music thanatology focuses on providing palliative care for the dying through music. This practitioner uses her harp, and sometimes her voice, to induce calm and provide solace.
Currently, the United States has over 5,300 hospice programs serving approximately 1.6 million terminally ill patients annually. About 38 percent of hospice patients have cancer. The top noncancer diagnoses are extreme frailty in the elderly (14 percent), dementia (13 percent), heart disease (11 percent), and lung disease (9 percent) (NHPCO, 2012 ). Because hospice care is a cost-effective alternative to expensive life-saving treatments, U.S. government health-care benefits (Medicare and Medicaid) cover it, as do most private insurance plans. In addition, community and foundation contributions allow many hospices to provide free services to uninsured patients who cannot pay (Hospice Foundation of America, 2013 ). Consequently hospice is affordable for most dying patients and their families. Hospices also serve dying children—a tragedy so devastating that social support and bereavement intervention are vital.
Besides reducing patient physical suffering, hospice contributes to improved family functioning. The majority of patients and families report high satisfaction with quality of care and pain management, enhanced sense of social support, and (in the case of home hospice) increased ability to sustain patient care at home (Candy et al., 2011 ). In one study, family members experiencing hospice scored higher than nonhospice family members in psychological well-being one to two years after their loved one’s death (Ragow-O’Brien, Hayslip, & Guarnaccia, 2000 ).
As a long-range goal, hospice organizations are striving for broader acceptance of their patient- and family-centered approach. Culturally sensitive approaches are needed to reach more ethnic minority patients, who are far less likely than white patients to participate in hospice (NHPCO, 2012 ). Canada has a Web-based hospice outreach service, the Canadian Virtual Hospice ( www.virtualhospice.ca ), to support patients, families, and care providers—whether or not they are part of a hospice program—with information, resources, and connections to others with similar concerns.
In developing countries, where millions die of cancer and other devastating illnesses each year, community-based teams working under a nurse’s supervision sometimes deliver palliative care. But they face many obstacles, including lack of funding, pain-relieving drugs, and professional and public education about hospice. As a result, they are small “islands of excellence,” accessible to only a few families (Ddungu, 2011 ).
REVIEW Why is the stage notion an inaccurate account of dying patients’ mental and emotional reactions?
CONNECT Reread the description of Sofie’s mental and emotional reactions to dying on pages 646 – 647 . Then review the story of Sofie’s life on pages 3 – 4 in Chapter 1 . How were Sofie’s responses consistent with her personality and lifelong style of coping with adversity?
APPLY When 5-year-old Timmy’s kidney failure was diagnosed as terminal, his parents could not accept the tragic news. Their hospital visits became shorter, and they evaded his anxious questions. Eventually, Timmy blamed himself. He died with little physical pain, but alone, and his parents suffered prolonged guilt. How could hospice care have helped Timmy and his family?
REFLECT If you were terminally ill, where would you want to die? Explain.
image19 The Right to Die
In 1976, the parents of Karen Ann Quinlan, a young woman who had fallen into an irreversible coma after taking drugs at a party, sued to have her respirator turned off. The New Jersey Supreme Court, invoking Karen’s right to privacy and her parents’ power as guardians, complied with this request. Although Karen was expected to die quickly, she breathed independently, continued to be fed intravenously, and lived another 10 years in a persistent vegetative state.
In 1990, 26-year-old Terri Schiavo’s heart stopped briefly, temporarily cutting off oxygen to her brain. Like Karen, Terri lay in a persistent vegetative state. Her husband and guardian, Michael, claimed that she had earlier told him she would not want to be kept alive artificially, but Terri’s parents disagreed. In 1998, the Florida Circuit Court granted Michael’s petition to have Terri’s feeding tube removed. In 2001, after her parents had exhausted their appeals, the tube was taken out. But on the basis of contradictory medical testimony, Terri’s parents convinced a circuit court judge to order the feeding tube reinserted, and the legal wrangling continued. In 2002, Michael won a second judgment to remove the tube.
By that time, publicity over the case and its central question—who should make end-of-life decisions when the patient’s wishes are unclear—had made Terri a political issue. In 2003, the Florida legislature passed a law allowing the governor to stay the circuit court’s order to keep Terri alive, but on appeal, the law was declared unconstitutional. In 2005, the U.S. Congress entered the fray, passing a bill that transferred Terri’s fate to the U.S. District Court. When the judge refused to intervene, the feeding tube was removed for a third time. In 2005—15 years after losing consciousness—Terri Schiavo died. The autopsy confirmed the original persistent vegetative state diagnosis: Her brain was half normal size.
Before the 1950s, the right to die was of little concern because medical science could do little to extend the lives of terminally ill patients. Today, medical advances mean that the same procedures that preserve life can prolong inevitable death, diminishing both quality of life and personal dignity.
The Quinlan and Schiavo cases—and others like them—have brought right-to-die issues to the forefront of public attention. Today, all U.S. states have laws that honor patients’ wishes concerning withdrawal of treatment in cases of terminal illness and, sometimes, in cases of a persistent vegetative state. But no uniform right-to-die policy exists, and heated controversy persists over how to handle the diverse circumstances in which patients and family members make requests.