Endings: Death and Dying Chapter 19 Robert S. Feldman

What is death? Functional death-absence of heartbeat and breathing Brain death-all electrical brain waves have ceased Legal death-in most cases, considered the absence of brain functioning Define: Functional death is defined by an absence of heartbeat and breathing. Although this definition seems unambiguous, it is not completely straightforward. Brain death occurs when all signs of brain activity, as measured by electrical brain waves, have ceased. Legal definition of death in most localities in the United States relies on the absence of brain functioning, although some laws still include a definition relating to the absence of respiration and heartbeat. The difficulty in establishing legal and medical definitions of death may reflect some of the changes in understanding and attitudes about death that occur over the course of people’s lives. 638

Death across the Life Span: Causes and Reactions Infancy and childhood Miscarriage grief due to the Still birth ‘unnatural’ order Sudden infant death of things Accidents Motor vehicles Fires Drowning Homicides Infancy and childhood: Although the rate has declined since the mid-1960s, the United States ranks behind 35 other countries in the proportion of infants who die during the first year of life. During childhood, the most frequent cause of death is accidents, most of them due to 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. By the early 1990s, death by homicide had become the fourth leading cause of death for children between the ages of 1 and 9 (Finkelhor, 1997; Centers for Disease Control, 2004). Parent reactions Death of a child produces the most profound sense of loss and grief. In fact, there is no worse death in the eyes of most parents, including the loss of a spouse or of one’s own parents. Parents’ extreme reaction is partly based on the sense that the natural order of the world, in which children “should” outlive their parents, has somehow collapsed. Their reaction is often coupled with the feeling that it is their primary responsibility to protect their children from any harm, and they may feel that they have failed in this task when a child dies (Gilbert, 1997; Strength, 1999). Parents are almost never well equipped to deal with the death of a child, and they may obsessively ask themselves afterward, over and over, 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 the loss of a child significantly increases the chances of admission to a hospital for a mental disorder. 639

Death across the Life Span: Causes and Reactions Childhood No concept of death until around the age of 5 Around the age of 5, better understanding of finality and irreversibility of death By about age 9, acceptance of universality (happens to everyone) and finality of death By middle childhood, understanding of some customs involved with death (e.g., funerals, cremation, and cemeteries) Childhood: Children themselves do not really begin to develop a concept of death until around the age of 5. Although they are well aware of death before that time, they are apt to think of it as a temporary state that involves a reduction in living, rather than a cessation. For children who believe this, death is not particularly fearsome; rather, it is something of a curiosity. If people merely tried hard enough—by administering medicine, providing food, or using magic—dead people might “return” (Lonetto, 1980). Cause of death Motor-vehicle accidents, child abuse and beatings, and pedestrian injuries are the leading causes of trauma-related deaths among preschool children According to reports from the National Pediatric Trauma Registry: Car accidents accounted for about 30 percent of the deaths, child abuse and beatings totaled 21 percent and pedestrian injuries -- caused, for instance, by a child running into a street and being struck by a car -- reached 18 percent. 639

Death across the Life Span: Causes and Reactions Adolescence View of death are often unrealistic-”can’t happen to me” Sense of invincibility Leading causes Personal fable death-accidents Imaginary audience homicide, suicide, Terminal Illness cancer and AIDS Denial Depression Define: Personal fable, a set of beliefs that causes them to feel unique and special—so special, in fact, that they may believe they are invulnerable and that the bad things that happen to other people won’t happen to them. Most frequent cause of death among adolescents is accidents, most often involving motor vehicles. Other frequent causes include homicide, suicide, cancer, and AIDS. 641

Death across the Life Span: Causes and Reactions Young Adulthood Prime time of life Death seems unthinkable Creates feelings of anger and impatience Concerns Desire to develop intimate relationships and express sexuality Future planning Death at such a point in life seems close to unthinkable, its occurrence is particularly difficult. Because they are actively pursuing their goals for life, they are angry and impatient with any illness that threatens their future. Leading cause of death continues to be accidents, followed by suicide, homicide, AIDS, and cancer. By the end of early adulthood, however, disease becomes a more prevalent cause of death. Young adults who have a terminal illness face additional burdens. Should they marry, even though it is likely that the partner will soon end up widowed? Should a couple seek to conceive a child if the child is likely to be raised by only one parent? How soon should one’s employer be told about a terminal illness, when it is clear that employers sometimes discriminate against unhealthy workers? None of these questions is easily answered. 641

Death in young adulthood Leading cause of death continues to be accidents, followed by suicide, homicide, AIDS, and cancer. By the end of early adulthood, however, disease becomes a more prevalent cause of death.

Death across the Life Span: Causes and Reactions Middle Adulthood Life-threatening disease not surprising Fear of death often greatest Causes Most frequents cause: heart attack or stroke Fears about death are often greater in middle adulthood than at any time previously—or even in later life. These fears may lead people to look at life in terms of the number of years they have remaining as opposed to their earlier orientation toward the number of years they have already lived. Most frequent cause of death in middle adulthood is heart attack or stroke. Although the unexpectedness of such a death does not allow for preparation, in some ways it is easier than a slow and painful death from a disease such as cancer. 642

Death across the Life Span: Causes and Reactions Late adulthood Realize death is imminent Face an increasing number of deaths in their environment Less anxious about dying Causes Cancer, stroke, and heart disease -Terminal decline-decrease in cognitive and reading functions indicates death may be imminent in the next few years Terminal decline, a significant drop in performance in cognitive areas such as memory and reading may foreshadow death within the next few years. 642

Suicide in Later Life Rate for men climbs steadily during late adulthood No age group has a higher rate of suicide than white men over the age of 85 Severe depression Some form of dementia Loss of a spouse 643

Are there steps toward death? Kübler-Ross Developed a theory of death and dying Built on extensive interviews with people who were dying With input from those who cared for them 646

Types of Depression in stage 4 Reactive depression- Sadness at what has been lost Job Ability to function Relationships Preparatory depression- Sadness over the lack of a future Seeing children graduate/get married Inability to spend the rest of their life with spouse

Kübler-Ross Theory 647

Evaluating Kübler-Ross’ Theory PROS One of first people to observe systematically how people approach their own deaths Increased public awareness and affected practices and policies related to dying CONS Largely limited to those who are aware that they are dying Less applicable to people who suffer from diseases in which the prognosis is uncertain Stage-like increments questioned Anxiety levels not included Significant concerns about the accuracy of Kübler-Ross’s account of how people react to impending death. In response to some of these concerns, other theorists have developed some alternative ideas. 648

Choosing the Nature of Death DNR Issues States that no ‘extraoridnary’ measures should be taken Differentiates of “extreme” and “extraordinary” measures from those that are simply routine Determines of individual’s current quality of life and whether it will be improved or diminished by a particular medical intervention Determines of decision-maker role Define: DNR: DNR signifies that rather than administering any and every procedure that might possibly keep a patient alive, no extraordinary means are to be taken. 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. 650

Doctors and Decisions Medical personnel are reluctant to suspend aggressive treatment. Physicians often claim to be unaware of patients’ wishes Physicians and other health care providers may be reluctant to act on DNR requests Trained to save patients To avoid legal liability issues Medical personnel are reluctant to carry out the wishes of the terminally ill and their families to suspend aggressive treatment. Even when it is certain that a patient is going to die, and patients determine that they do not wish further treatment, physicians often claim to be unaware of their patients’ wishes. Physicians and other health care 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 issues. 650

Living Wills Health care proxy Durable power of attorney Living will: legal document that designates the medical treatments a person does or does not want if the person cannot express his or her wishes. Some people designate a specific person, called a health care proxy, to act as their representative in making health care decisions. Health care proxies are authorized either in living wills or in a legal document known as durable power of attorney. See figure 19-3 on page 651 for an example of a living will… 651

Euthanasia and Assisted Suicide Passive-removing any medical equipment that may keep the person alive. Allows patient to die naturally. Voluntary active-when a caregiver or medical personnel decides to end a patient’s life before its time Assisted suicide Kevorkian Oregon-Right to die law Assisted suicide, in which a person provides the means for a terminally ill individual to commit suicide. Euthanasia: the practice of assisting terminally ill people to die more quickly. Popularly known as “mercy killing,” euthanasia can take a range of forms. Passive euthanasia involves removing respirators or other medical equipment that may be sustaining a patient’s life, to allow them to die naturally. This happens when medical staff follow a DNR order, for example. In voluntary active euthanasia caregivers or medical staff act to end a person’s life before death would normally occur, perhaps by administering a dose of pain medication that they know will be fatal. Assisted suicide, as we have seen, lies between passive and voluntary active euthanasia. 650

Caring for the Terminally Ill Place of Death Home care Hospice care Hospital care In home care, dying people stay in their homes and receive treatment from their families and visiting 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 accumulation of treasures around them. Hospice care is care for the dying provided in institutions devoted to those who are terminally ill; hospices are designed to provide a warm, supportive environment for the dying. They do not focus on extending people’s lives, but rather on making their final days pleasant and meaningful. 653

Mourning and Funerals: Final Rites Costs Average funeral and burial costs $7,000 Survivors are susceptible to suggestions to “provide the best” for deceased Determined by social norms and customs Funeral is not only a public acknowledgment that an individual has died, but recognition of everyone’s ultimate mortality and an acceptance of the cycle of life. 655

What is the difference? Bereavement-Acknowledging that one has experienced a loss Grief-emotional response that follows Everyone handles grief differently 3 stages to grief Define: Bereavement is acknowledgment of the objective fact that one has experienced a death, while grief is the emotional response to one’s loss. 656

Grieving in the Western World 1st stage: grief typically entails shock, numbness, disbelief, or outright denial 2nd stage: people begin to confront the death and realize extent of their loss 3rd stage: people reach accommodation stage. Starting their life over again or beginning to adjust to the change. Ultimately, most people are able to emerge from the grieving process and live new lives, independent from the person who has died. They form new relationships, and some even find that coping with the death has helped them to grow as individuals. They become more self-reliant and more appreciative of life. 657

When Grief Goes Awry No particular timetable for grieving For some people (but not all) grieving may take considerably longer than a year Only 15 to 30 percent of people show relatively deep depression following loss of loved one Those who show most intense distress immediately after a death are most apt to have adjustment difficulties and health problems later on 657

Consequences of Grief and Bereavement Negative Widowed people are particularly at risk of death More negative consequences if person is already insecure, anxious, or fearful, overly dependent, or lacking in social support Sudden death Positive Remarriage lowers risk of death for survivors, especially for widowers Some studies find that the risk of death is as much as seven times higher than normal in the first year after the death of a spouse. At particular risk are men and younger women who have been widowed. Those who were highly dependent on the person who died, and who therefore feel more vulnerable without them, are apt to suffer more after the death, as are those who spend a great deal of time reflecting on a loved one’s death and their feelings of 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. 658

Becoming an Informed Consumer of Development Helping a Child Cope with Grief Be honest Encourage expressions of grief Reassure children that they are not to blame for the death Understand that children’s grief may surface in unanticipated ways Children may respond to books for young persons about death 659