Chapter 11 Death and Dying

This term means "the study of dying," which is the theme of this chapter

For our purposes, dying is the process by which physical body functions (e.g., beating of the heart, work of the lungs, etc.) decrease, and the decrease impairs the body's ability to maintain normal life function.

For our class purposes, death is the cessation of all body physical functions (e.g., beating of the heart, work of the lungs, etc.) This definition is not, however, as "clear" as it might sound. Advancements in medical technology allow health practitioners to monitor detailed brain functions. As a result, health practitioners can identify individuals whose brain activity is minimal (in essence, the only activity in the brain is the commands "telling" the heart to beat and the lungs to inhale). If the cause of the minimal activity level in the brain is considered irreversible and there is no hope of recovering improved function, then many states have special legislation that allows for a diagnosis of "brain death."

Though not noted in your textbook, most young children do not understand the concept of death. Preschool children typically believe that death can be reversed, that dead persons still feel or breathe, and that death can be avoided by some people, such as those who are clever or lucky. It is not until children reach "school age" (typically around ages 6 to 7), that they understand death as both a permanent and universal concept. By universal, researchers meaning an understanding that all living things will die at some point.

Adults do understand the inevitability and universality of death. That does not mean that it is easy for adults to talk about death. For example, while we might make comments such as "this pizza is to 'die' for," or tell someone to "drop dead" when we are mad at them, when someone actually dies, we use phrases such as "they passed away," or "they passed on."

Some researchers hypothesize that one reason it is difficult for adults to "talk" about death, is that death "means" different things to different people. Robert Kalish suggests four different meanings that death may have for adults.

Death defines the endpoint of one's life. Typically beginning in middle adulthood, our "time" orientation changes from "time since birth, to time until death." As noted in a study by Bernice Neugarten, individuals often reflect thoughts such as "Before I was 35, the future just stretched forth. There would be time to do and see and carry out all the plans I had...Now I keep thinking, will I have time enough to finish off some of the things I want to do?"

Children often view death as a punishment for being bad, but many adults also share this view. Some religious teachings make explicit linkages between sin and death. It appears that some individuals who are religious BUT questioning of their faith have higher levels of fear about their own death.

Also strengthened by religious teachings, some individuals believe that death represents a transition to another life. In a 2006 study 72 percent of Americans believe in life after death (this is a slight increase from 70 percent in a 1990 study). Though not noted in the textbook, this belief is most common in women, Protestants, and Catholics. It is also interesting to note that age is NOT a factor in this belief. Adults in their 20s were just as likely to believe in life after death as were those older than 60.

To many, death means loss. For some, the loss relates to an inability to complete projects/plans; for others, emphasis is on the loss of one's body, and related sensory experiences. For still others, it is the loss of relationships that is most distressing. "Young adults are more concerned about loss of opportunity to experience things and about the loss of family relationships, while older adults may be more concerned with the loss of time to complete some inner work (reference back to the Life Review concept in the previous online week material).

Most individuals have some level of fear or death anxiety when contemplating their own death. Fears may evolve around the potential losses (see previous paragraph) or the process of dying (will it be painful; will there be indignities).

Middle aged adults show the greatest fear of death, older adults show the least, and young adults fall somewhere in between. As the textbook authors note, "this does not mean that older adults are unconcerned about death. On the contrary, they are more likely to talk about it and think about it than are younger adults. But while death is highly salient to the elderly, it is apparently not as frightening as it was in midlife." In related information, the textbook author notes that older individuals are more likely to "prepare" for death by having life insurance or by completing a will.

There appears to be a curvilinear (U-shaped) relationship between religiosity and fear of death. Individuals who are either deeply religious or are deeply irreligious have less fear of death.

People which high levels of self esteem tend to have lower fears about death. As well, having a sense of purpose in life (one has satisfied personal goals and life has been worthwhile) also correlates with a lower level of death anxiety. People who feel lots of regret have higher death anxiety. In part, these individuals likely feel they have NOT achieved goals they set out to achieve, and thus feel that they have been a disappointment to self and others. The latter issues (sense of purpose versus regret) very much correlate with Erikson's final development task of integrity versus despair (which we covered in an earlier chapter). Though not covered in your textbook, researchers have looked at the more "traditional" measurements of personality and their relationship to a sense of fear. A study by Frazier and Foss-Goodman (1989) found that the trait of extraversion is not related to fear of death but the trait of neuroticism is related to fear of death. Recall from a prior chapter on personality, the neuroticism involves measures of anxiety, worry, depression, etc.

Be aware that not all individuals go through a process or stages of dying. There are many times when death happens as a sudden, accidental event.

A majority of adults report that they would prefer to die in their homes, but "the fact is that the great majority die in hospitals and nursing homes." As noted in a 2004 study by Teno, Clarridge, and Casey, only about one-third die at home. The textbook author does not attempt to explain WHY most adults would prefer to die in their own homes, NOR does the textbook author attempt to address the reaction that neighbors might have if we have more people dying in their own homes (e.g., watching a hearse pull up to a neighbors house; seeing the body removed from the house, etc.). We will return to this theme in a Discussion Board question.

Though her work has many critics, Dr. Elizabeth Kubler Ross is widely cited in most psychology and thanatology textbooks. She was really the first physician to focus special attention and interest on the experiences of dying patients. Her original work was published in 1969. At that time, the medical community treated dying patients as a "failure" and many physicians did not want to be involved with dying patients. Kubler Ross' patients were predominantly younger and middle-aged individuals dying of cancer, thus the extent to which her stages apply to older people is unknown. Also, her work primarily focused on Caucasians. Thus, the application to other cultural groups is unknown. Though her work is often called a "stage" approach to dying (implying that individuals proceed through five steps before death occurs), Kubler Ross really just focused on emotional tasks, and did not consider them like "stair step" stages

Denial is the "first stage" of the five in Kubler-Ross' theory of coping with one's impending death. Denial involves defending oneself from the threatening information by refusing to believe it (e.g., by saying "not me," or "I feel fine.") Denial gives the person a period of time in which they can marshal other strategies for coping with the shock and reality of one's own dying experience.

Anger is the second stage in Kubler Ross' theory of coping with one's impending death. In the anger stage, people often ask, "why me?" The patient often resents those who are healthy and becomes angry at whatever fate put him or her in this position. This may be reflected in angry outbursts at nurses, family members, doctors...anyone within reach. Kubler-Ross argues that anger is a classic reaction to the news of one's impending death.

In the bargaining stage, the person may ask to live long enough to see the birth of a grandchild, or a loved one graduate, or the next holiday, or ... They are trying to make the deal with people (such as the doctors), or with a god they believe in. The hope is that they will survive to do something that they find to be meaningful.

Depression is the fourth stage in Kubler Ross' theory of coping with one's impending death. Depression is seen as a kind of mourning...for the loss of relationships as well as one's own life. Though our textbook does not make the following distinction, many other books on death and dying do. The depression that ensues relative to the thought of losing our contact with loved ones/relationships is called "anticipatory" depression. This is different than the depression that ensues relative to the loss of our own body functions, as the dying process progresses (such as the loss of bladder control, loss of strength, etc.) This type is called "reactive" depression. Though I won't go into the details, the way in which one treats or responds to the individual should differ based on the type of depression: reactive or anticipatory.

Acceptance is the final stage in Kubler Ross's theory of coping with one's impending death. In the acceptance stage there is a quiet understanding of and readiness for one's death. The patient is no loner depressed, but may be quiet, even serene. They are ready for death because they know and accept that it is inevitable.

Some thanatologists suggest there is an additional task or "stage" in the process of dying" the process of saying farewell to loved ones and friends. Out of 100 terminally ill patients studied, only 19 percent did not do or plan any farewell statements with friends and relatives. As described in the textbook, for those who had or planned farewells, the form of the farewell varied. For some, it involved letters or gifts, or the passing on of personal treasures. In other case, it involved making some item/object for family or friends. However, the most common farewell form was simply conversation; "by saying goodbye to someone, the dying person signals that the person matters enough to them to warrant such a farewell."

Steven Greer's work is an interesting "counter point" to the perspective of Kubler Ross. Whereas Kubler Ross' work assumes a certain universality to the emotional tasks, Greer's studies found great individualism in the way people handled their illness and dying process. Specifically, Greer's work identified five patterns or "pathways" of dying. His work is unique in that he tracked the women in the study for 15 years after they had received a breast cancer diagnosis. His interest was in determining is the pattern or pathway predicted survival. It did.

The fighting spirit involves an optimistic attitude, accompanied by a search for more information about the disease condition. The individual often sees their disease as a challenge and plan to fight it with every method available. The actor Christopher Reeves is a good example of one who adopted the fighting spirit style.

For exam purposes, you need to recognize that the positive avoidance style involves a denial type response, but with a "twist." Unlike stoic acceptance, the person in positive avoidance will go through the treatments recommend (including having surgery and doing what the doctor recommends), but will tell themselves and others this is "merely precautionary." In essence, this person rejects the disease diagnosis, while still undergoing treatment for the disease.

For exam purposes, you need to recognize that stoic acceptance involves a "fatalism" response. In this reaction style, the individual acknowledges the terminal diagnosis, but the individual does not seek further information about the disease. Instead, they attempt to ignore the diagnosis and carry on their normal life as much as possible (in essence, rather like staying in Kubler Ross' state of denial). The "downside" of this attitude is that the person may not engage in activities or treatments that could positively prolong their life by effectively fighting the disease.

For exam purposes, you need to recognize that the helplessness/hopelessness style is when the individual just feels overwhelmed by the diagnosis. They see and define their self as dying and/or gravely ill. They are without hope for any improvements with treatment; in essence this is very much a depression reaction ala Kubler Ross.

For exam purpose, you need to recognize the anxious preoccupation style as one in which the individual has a strong and continuing anxiety response. They often seek information, but always interpret it negatively/pessimistically (such as "well, that medicine wouldn't help me.") They "listen" closely to their body, monitoring it for any possible signs of change and thus interpret virtually everything (including non-illness feelings) as a recurrence or a progression of the illness.

"Only 35 percent of those whose initial reaction had been either denial (positive avoidance) or fighting spirit had died of cancer 15 years later..." Similar results have been found with melanoma patients and AIDS patients. One reason for the better outcomes among the positive avoidance and fighting spirit groups is that their body's appear more capable of mounting defenses that rely on T cells and NK (natural killer) cells.

Stoic acceptance, helplessness/hopelessness, and anxious preoccupation patterns - "...76 percent of those whose initial reaction had been stoic acceptance, anxious preoccupation, or helplessness/hopelessness..." were dead of cancer 15 years latter.

Dying individuals who have positive and supportive relationship experience less pain and depression in their final months of life; they also have longer survival times.

Though not well detailed in the textbook, many individuals fear the loss of control during the process of their own dying. In essence, they fear things may be done to them or for them which they do NOT want done. To address this particular fear, there are two "control" related themes we need to address: advanced directives for medical care, and hospice care.

The text describes the living will as a legal document, which allows individuals to express their wishes regarding medical care, should there come a time when the individual cannot speak for him/herself. Most often, the individual expresses a desire for no heroic measures to extend their lives. While living wills are valid in the United States, there is still controversy over their intent. Controversy, in turn, can lead to long and emotionally difficult court cases. What YOU consider "heroic" measures, may NOT be what I consider heroic measures. To be of use, living wills need to be VERY explicit about what you do and do not want, AND the living will needs to be shared with family members and a personal physician. About 34 percent of all adults in the U.S. have a living will, though this increases to 60 percent for people age 60 and older.

The durable power of attorney for health care (or DPoA-HC) is also a written document. However, this document does not make explicit statements about medical care; rather, this document appoints a specific individual to speak on your behalf should there come a time when you cannot speak for yourself. It is the expectation that the person knows you well enough to know your personal desires, and that they can listen to information from your medical care providers regarding prognosis, and then make decisions consistent with your desires. It is important to have either a living will or a DPoA-HC document, regardless of age! (It is also permissible to have both documents; the living will can be very useful to your DPoA-HC.) When there is an absence of documentation and when there is controversy among family members, the only method for resolving the conflicts is the court system. Many of you are no doubt aware of the past controversy concerning a young woman in Florida (Terry Schiavo).

The text provides some information about the Oregon Death with Dignity Act, allowing for the practice of physician-assisted suicide. The law allows, in certain terminal situations, a patient to request a lethal dosage of medication from their physician. In 2002, 58 individuals in Oregon made this request; of those individuals, 38 used the lethal dose to end their lives. As of 2005, 64 people had made the request for lethal prescriptions, and 37 used then to end their lives. In theory, it appears that many individuals support the physician assisted suicide concept; a study cited in your text found 60 percent of terminally ill patients surveyed were in support. However, when asked to consider it seriously for themselves, only 10 percent of terminally ill patients felt that they would. The same study found that those individuals most likely to consider making a physician assisted suicide request had some symptoms of depression, need substantial caregiving help, were in pain, and were younger than age 65. Thus, the textbook author concludes on page 336, "There appears to be a distinction between the hypothetical construct and the actual application to oneself."

Though originally a British concept, Americans have embraced the hospice concept. Today, there are over 3,000 hospice programs in the United States. For test purposes, I do want students to understand the hospice philosophy, services provided, and realities regarding hospice clients.

Hospice services emphasize palliative care (minimize or neutralize pain and provide general comfort). They do not seek to "cure," in fact, a person must have a terminal diagnosis to be admitted to a hospice program. Life prolonging measures are not used because a person in this program has come to an acceptance (ala Kubler Ross) that death is fairly imminent (usually anticipated inside of 6 months) and that death is a normal part of life. The hospice philosophy also requires that the family ready themselves for the death by facing their own feelings and preparing for a future without this person. Unlike most any other medical situation, the family and the dying person are in control of the type of care and the setting in which it is received.

Registered nurses (to check medications and medical condition, while providing education for the family caregiver); Physicians Home health aides (to help with personal care like bathing), Homemakers (to help with laundry and cleaning of the home); Volunteers (to provide social and emotional support); Various therapists (physical, occupation, speech, to help the person adapt to disabilities); Counselors and social workers (to provide emotional and spiritual support, including bereavement follow-up support for the family); Most hospice programs have a chaplain on staff. Hospice programs may also provide various medical supplies (like a hospital bed, shower equipment, etc); Medications for pain control; hospitalization during a crisis; And respite care for the family to give them some relief from time to time. After support for the family (bereavement follow-up) may go on for up to one year after the death of the loved one.

As noted, hospice is most commonly utilized by individuals with terminal cancer, versus other conditions like heart problems or dementia. This is because many types of cancer have more "predictable" courses of dying (i.e., life expectancy prognoses). The textbook author notes that while the Medicare program (federal health insurance program for people age 65 and older) has a 6 month long hospice benefit, most people (as you note) are only hospice patients for about 1 months before they die.

Every culture has some set of rituals associated with death. As the textbook notes, "far from being empty gestures, these rituals have clear important functions, they provide a means through which societies simultaneously seek to control the disruptiveness of death and to make it meaningful The funeral exists as a formal means to accomplish the work of completing a biography, managing grief, and building new social relationships after the death." This is one reason that most funeral rituals involve testimonials or biographies telling the story of the person's life. Ceremonies also help place the death in a larger philosophical or religious context.

Though culture leads to variation in funeral roles, all societies have roles and norms regarding mourning clothing, death notifications, demeanor, food, and memorial services.

As one of the first individuals to study the process of grieving, John Bowlby proposed that each individual goes through four distinct stages.

In this first stage, individuals feel disconnected. Common feelings include "I can't keep my mind on anything very long," or "I'm afraid I'm losing my mind. I can't seem to think clearly." This stage typifies the first month following the death of the loved one.

In the second stage, the person is restless. There is deep mourning of the separation from the beloved person, but also commonly experiences some anger. The textbook examples of anger focus on health personnel (e.g., "His doctors didn't try hard enough") or others ("His boss should have known better than to ask him to work so hard.) Though the textbook does not mention this, it is also quite common at this time to feel anger toward the person who died. These feelings peak in intensity during the second month after the death of the loved one.

In the third stage, there is a great lethargy and depression. Emotions and behaviors are almost the opposite of the yearning stage. A person may go from feeling restless and unable to sleep, to constant fatigue and social isolation: "Just when I thought I should be feeling better, I am feeling worse." The third stage reaches its peak during the 5th and 6th months of mourning.

Bowlby felt that within 1 to 2 years of the death, the individual would enter the reorganization stage. At this time, the person would take up his/her usual activities and find new relationships.

The original work of Wortman and Silver is not reported in your textbook, but the follow up work by Bonanno, Wortman, and Lehman is reported. I would like to expand just a bit on the original work. I would note that it is in direct opposition to the work of Bowlby. The original Wortman and Silver approach does not support a stage-like approach to the process of mourning. In fact, their research finds that some individuals do not experience any grieving response after the death of a loved one. Thus, this approach identified four patterns or pathways through the grieving process. The patterns are identified below.

Relatively high distress following the death of a loved one, with relatively rapid recovery over 6 to 12 months. This was found in to 36 to 40 percent of the people in the original Wortman and Silver study.

Continued high distress over several years. This is the pattern displayed by about 33 percent of the people in the original Wortman and Silver study.

A little distress in the first few months, but high levels of distress at a later point. This pattern is seldom seen (somewhere between 1 to 5 percent of the time).

No notable level of distress either immediately or later. This was the pattern found in 26 percent of all those in the original Wortman and Silver study.

For exam purposes, you should recognize that the absent grieving pattern is, as you note, essentially void of any grief/distress at the onset (immediately after the death) OR later on, literally years after the death. About 26 percent of people have been found to be in this absent grieving pattern. Some may question whether this shows a lack of respect for the person who has died, or whether there was a lack of affection for the person who died. Grief researchers do NOT believe this accounts for the absent grieving pattern and the relative high percentage of people in this pattern (26%). Rather, grief researchers find that this pattern describes respectful and affectionate family members who had the "opportunity" to do their grieving while the person was still alive. In essence, this pattern describes situations in which the family has taken care of the dying person over an extended and lengthy illness. For example, a person with Alzheimer's dementia (sometimes called the "living" death) will eventually die of the disease (assuming that another health problem doesn't kill them first), but the average time from diagnosis to death is 8 years. In a case like this, the grieving often takes place while the person is still alive, but the family is slowly but steadily deprived of the person they knew as the disease "robs" more and more of the memory and abilities of their loved one. When the physical death finally occurs, it may be more of a relief for the surviving family, thus there is no grief experienced after the death.

Please note, I put the word "normal" in quotations because the word "normal" tends to imply this is the typical or most common pattern/reaction to loss...and if you do anything else, you are abnormal. That, I believe, is an incorrect attitude, and isn't borne out by the statistics as well. The "normal" pattern is described (as your posting indicates) as involving relatively high distress immediately following the loss, with a relatively rapid recovery. The U.S. culture tends to view this pattern as the most "appropriate" response to grief. For years, grief researchers tried to quantify what "relatively rapid recovery" meant. If you look at studies from 20 to 50+ years ago, you will find a one year standard (i.e., you grieve for one year, and then reengage in society...much like in the movie Gone with the Wind, where Scarlet O'Hara was supposed to wear black and avoid parties for one year after her first husband died). Today, you won't hear many grief researchers referencing a one year time frame; most believe there isn't any typical time frame. Statistics do not bear out that the so called "normal" pattern is typical for the vast majority of individuals in the U.S. To get to the percentage for this pattern, you really have to "back into" the number. Our textbook notes that absent grieving constitutes 26% of all individuals, delayed grieving constitutes 1 to 5%, and chronic grieving constitutes 33%. That leaves somewhere between 36 to 40% in this "normal" pattern. You should know these statistics for exam purposes.

For exam purposes, you should know that the delayed grieving pattern is the least common (only 1 to 5 percent). These individuals show little distress in the first few months, but high levels of stress at a later point. This could, in some cases, be related to the post-traumatic stress syndrome that we studied two weeks ago.

For exam purposes, you should know that chronic grief is suffered by about one-third of those who lose a loved one. It involves continuing high levels of distress that extend over several years, or in fact, may never be reduced. This pattern is sometimes seen in older people who had intense, very close marriages, and is also more typically seen in parents who have a child precede them in death. Surviving the death of a child has now become the highest stress item on a revision to the Holmes and Rahe scale that we examined two weeks ago (our textbook did not have the revised information, by the way.)