Overview
Model of Life-Threatening Illness
The Dying Trajectory
Anticipatory Grief
Phases of Bereavement
General Aspects of Grief Therapy
Complicated Grief
Children and Grief

Grief and Developmental Stages         Infants         Ages 2-3 years         Ages 3-6 years         Ages 6-9 years         Ages 9 years and older         Issues for Grieving Children Interventions for Grieving Children         Explanation of Death         Correct Language         Planning Rituals         References and Resources for Grieving Children

Cross-Cultural Responses to Grief and Mourning
Changes to This Summary (07/21/2004)
Questions or Comments About This Summary
More Information

Overview

Health care providers will encounter grieving individuals throughout their personal and professional lives.[1] The progression from the final stages of cancer to the death of a loved one is experienced in different ways by different individuals. In fact, one may find that the cancer experience, although it is difficult and trying, has led to significant personal growth. Coping with death is usually not an easy process and cannot be dealt with in a cookbook fashion. The way in which a person will grieve depends on the personality of the grieving individual and his or her relationship with the person who died. The cancer experience, the manner of disease progression, one’s cultural and religious beliefs, coping skills and psychiatric history, the availability of support systems, and one’s socioeconomic status also affect how a person will cope with grief.

Distinguishing between the following terms is important: grief, mourning, and bereavement. These terms are sometimes used interchangeably, yet often with different intentions.[2]

Grief: The normal process of reacting both internally and externally to the perception of loss.[3] Grief reactions may be seen in response to physical or tangible losses (e.g., a death) or in response to symbolic or psychosocial losses (e.g., divorce, losing a job). Each type of loss implies experience of some type of deprivation. As a family goes through a cancer illness many losses are experienced and each prompts its own grief reaction. Grief reactions can be psychological, emotional, physical, or social. Psychological/emotional reactions can include anger, guilt, anxiety, sadness, and despair. Physical reactions can include sleep difficulties, appetite changes, somatic complaints, or illness. Social reactions can include feelings about taking care of others in the family, the desire to see or not to see family or friends, or the desire to return to work. As with bereavement, grief processes are dependent on the nature of the relationship with the person lost, the situation surrounding the loss, and one’s attachment to the person. One author [4] noted 5 characteristics of grief:

1. Somatic distress.
2. Preoccupation with the image of the deceased.
3. Guilt.
4. Hostile reactions.
5. A loss of the usual patterns of conduct.

Mourning: The process by which people adapt to a loss. Different cultural customs, rituals, or rules for dealing with loss that are followed and influenced by one’s society are also a part of mourning.

Bereavement: The period after a loss during which grief is experienced and mourning occurs. The length of time spent in a period of bereavement is dependent upon the intensity of the attachment to the deceased, and how much time was involved in anticipation of the loss.

Grief work includes 3 tasks for a mourner.[5] These tasks include freedom from ties to the deceased, readjustment to the environment from which the deceased is missing, and formation of new relationships. To emancipate from the deceased, a person must modify the emotional energy invested in the lost person. This does not mean that the deceased was not loved or is forgotten, but that the mourner is able to turn to others for emotional satisfaction. In readjustment, the mourner’s roles, identity, and skills may have to be modified in order to live in the world without the deceased. In modifying emotional energy, the energy that was once invested in the deceased is invested in other people or activities.

Since these tasks usually require significant effort, it is not uncommon for grievers to experience overwhelming fatigue. The grief experienced is not just for the person who died, but also for the unfulfilled wishes, plans, and fantasies that were held for the person or the relationship. Death often awakens emotions of past losses or separations. One author [6] describes 3 phases of mourning:

1. The urge to recover the lost person.
2. Disorganization and despair.
3. Reorganization.

These phases grew out of the attachment theory of human behavior, which postulates people’s need to attach to others in order to improve survival and reduce risk of harm.

References

1. Casarett D, Kutner JS, Abrahm J, et al.: Life after death: a practical approach to grief and bereavement. Ann Intern Med 134 (3): 208-15, 2001.  [PUBMED Abstract]
   
   
2. Rando TA: Grief, Dying and Death: Clinical Interventions for Caregivers. Champaign: Research Press Company, 1984. 
   
   
3. Corr CA, Nabe CM, Corr DM: Death and Dying, Life and Living. 2nd ed. Pacific Grove, Calif: Brooks/Cole Publishing Company, 1997. 
   
   
4. DeSpelder LA, Strickland AL: The Last Dance: Encountering Death and Dying. 2nd ed. Palo Alto, Calif: Mayfield Publishing Company, 1987. 
   
   
5. Lindemann E: Symptomatology and management of acute grief. 1944. Am J Psychiatry 151 (6 Suppl): 155-60, 1994.  [PUBMED Abstract]
   
   
6. Bowlby J: Processes of mourning. Int J Psychoanal 42: 317-40, 1961. 
   
   

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Model of Life-Threatening Illness

Although there are currently several models that attempt to account for how individuals cope with a life-threatening illness, the task-based approach is the model most commonly used.[1] Several significant, limiting factors have been ascribed to the older model, a stage theory based on the original work of Elizabeth Kubler-Ross,[2] including the actual existence of these stages (denial, anger, bargaining, depression, and acceptance). There is no evidence that all individuals experience these stages, or that movement exists from one stage to another in a sequential pattern. Further, the sole analysis of this theory was flawed with limitations in the research methodology.[1]

The task-based model does not imply any order or sequence, and is therefore viewed as a more flexible, fluid model that helps to empower the patient and his or her family and significant others. Four phases, or segments, of a life-threatening illness have been identified and a task-based concept has been applied to understand how individuals confront each phase:[3] prediagnostic, acute, chronic, and recovery or death.

The prediagnostic phase of a life-threatening illness is the period of time prior to the diagnosis of illness when an individual recognizes symptoms or risk factors that make him or her prone to illness and during which diagnostic studies are performed. This is not a single moment, but may culminate in one moment when the diagnosis is first spoken.

The acute phase centers around the crisis of diagnosis in which a person is forced to understand the diagnosis and make a series of decisions regarding his or her medical care.

The chronic phase of an illness is the period of time between the diagnosis and outcome.[3] Individuals attempt to cope with the demands of life while simultaneously striving to maintain and comply with treatments and side effects. Until recently, the period between a cancer diagnosis and death was typically measured in months, most of which were spent in the hospital. Today people can live for years after the diagnosis of cancer.

Persons may experience recovery from their disease and thus deal with the psychological, social, physical, spiritual, and financial after-effects of cancer.

Other individuals encounter a final, or terminal phase of illness when death is no longer just possible, but inevitable. At this time medical goals change from curing illness or prolonging life to providing comfort and focusing on palliative care. The tasks during this final phase reflect this transition and often focus on spiritual and existential concerns.

References

1. Corr CA, Nabe CM, Corr DM: Death and Dying, Life and Living. 2nd ed. Pacific Grove, Calif: Brooks/Cole Publishing Company, 1997. 
   
   
2. Kubler-Ross E: On Death and Dying. New York: Macmillan Publishing Company Inc.,1969. 
   
   
3. Doka KJ: Living with Life-Threatening Illness: A Guide for Patients, Their Families, and Caregivers. New York: Lexington Books, 1993. 
   
   

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The Dying Trajectory

Individuals who are dying do not move toward death at the same rates or in the same ways. Different causes of death are associated with different patterns of dying.[1] These patterns, referred to as dying trajectories, indicate the path of the individual’s dying experience. Attitudes and behaviors of people caring for the patient are strongly influenced by the perception of the patient’s dying trajectory. Trajectories will also affect the types of emotional responses and coping mechanisms patients and their families will display, as well as the interventions that will be initiated. For these reasons, the purpose of understanding one’s dying trajectory is to anticipate and implement appropriate interventions.

The dying process can be described in terms of duration and shape. Duration refers to the time involved between the onset of dying and the arrival of death. Shape designates the course of the dying process (i.e., whether one can predict how the process will advance, and whether the approximate timing of the death is expected or unexpected).

The following examples of trajectories have been described:

• The gradual slant characterized by a long slow decline, sometimes lasting over a period of years.
• The downward slant represented by a rapid decline towards death in which the chronic phase of the illness is either short or nonexistent.
• The peaks and valleys trajectory, in which there are alternating patterns of remission and relapse.
• The descending plateaus trajectory, indicated by long, slow periods of decline followed by restabilization. Patients in this trajectory must repeatedly adjust to different levels of functioning.

Deaths associated with cancer are often lengthy processes, and may be linked with long-term pain and suffering, and/or a loss of control over one’s body or mental faculties. Protracted deaths are more likely to drain a family’s physical and emotional resources as caregivers will be required to provide care for longer periods of time. The spectrum of chronic care needs of these patients and their caregivers may benefit from referral to a palliative care service, where resources more appropriate to their needs may be provided as compared to the more cure-centered focus of high-tech medical facilities.[2]

Uncertain trajectories are more difficult to cope with than certain trajectories, since ambiguity generates anxiety and is often more difficult to cope with than certainty.

References

1. Glaser BG, Strauss AL: Time for Dying. Chicago: Aldine, 1968. 
   
   
2. McGrath P: Caregivers' insights on the dying trajectory in hematology oncology. Cancer Nurs 24 (5): 413-21, 2001.  [PUBMED Abstract]
   
   

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Anticipatory Grief

Anticipatory grief refers to a grief reaction that occurs in anticipation of an impending loss.[1] Anticipatory grief is the subject of considerable concern and controversy.[2]

The term anticipatory grief is most often used when discussing the families of dying persons, although dying individuals themselves can experience anticipatory grief. Anticipatory grief includes many of the same symptoms of grief after a loss. Anticipatory grief has been defined as “the total set of cognitive, affective, cultural, and social reactions to expected death felt by the patient and family.”[3]

These aspects of anticipatory grief have been identified among survivors:

• Depression.
• Heightened concern for the dying person.
• Rehearsal of the death.
• Attempts to adjust to the consequences of the death.

Anticipatory grief provides family members with time to gradually absorb the reality of the loss. Individuals are able to complete unfinished business with the dying person (e.g., saying “good-bye,” “I love you,” or “I forgive you”).

Anticipatory grief cannot be assumed to be present merely because a warning of a life-threatening illness has been given, or because a sufficient length of time has elapsed from the onset of illness until actual death. A major misconception is that anticipatory grief is merely conventional (postdeath) grief begun earlier. Another fallacy is that there is a fixed volume of grief to be experienced, implying that the amount of grief experienced in anticipation of the loss will decrease the remaining grief that will need to be experienced after the death.[2]

Several studies [4,5] have provided clinical data documenting that grief following an unanticipated death differs from anticipatory grief. Unanticipated loss overwhelms the adaptive capacities of the individual, seriously compromising his or her functioning to the point that uncomplicated recovery cannot be expected. Because the adaptive capacities are severely assaulted in unanticipated grief, mourners are often unable to grasp the full implications of their loss. Despite intellectual recognition of the death, there is difficulty in the psychologic and emotional acceptance of the loss which may continue to seem inexplicable. The world seems to be without order, and like the loss, does not make sense.

Some researchers report that anticipatory grief rarely occurs. They support this observation by noting that the periods of acceptance and recovery usually observed early in the grieving process are rarely found before the patient’s actual death, no matter how early the forewarning.[2] In addition, they note that grief implies that there has been a loss; to accept a loved one’s death while he or she is still alive can leave the bereaved vulnerable to self-accusation for having partially abandoned the dying patient. Finally, anticipation of loss frequently intensifies attachment to the person.

Although anticipatory grief may be therapeutic for families and other caregivers, there is concern that the dying person may experience too much grief, thus creating social withdrawal and detachment. Research indicates that widows usually remain involved with their dying husbands until the time of death.[6] This suggests that it may have been dysfunctional for the widows to have begun grieving in advance of their husbands’ deaths. The widows could begin to mourn only after the actual death took place.

References

1. Casarett D, Kutner JS, Abrahm J, et al.: Life after death: a practical approach to grief and bereavement. Ann Intern Med 134 (3): 208-15, 2001.  [PUBMED Abstract]
   
   
2. Corr CA, Nabe CM, Corr DM: Death and Dying, Life and Living. 2nd ed. Pacific Grove, Calif: Brooks/Cole Publishing Company, 1997. 
   
   
3. Knott JE, Wild E: Anticipatory grief and reinvestment. In: Rando TA, ed.: Loss and Anticipatory Grief. Lexington, Mass: Lexington Books, 1986, pp 55-60. 
   
   
4. Glick IO, Weiss RS, Parkes CM: The First Year of Bereavement. New York: Wiley-Interscience Publication, 1974. 
   
   
5. Parkes CM, Weiss RS: Recovery from Bereavement. New York: Basic Books, 1983. 
   
   
6. Silverman PR: Widow-to-widow. Springer Series on Social Work. Vol 7. New York: Springer Publishing Company, 1986. 
   
   

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Phases of Bereavement

The conceptual framework of the attachment theory (the bonds that are formed early in life with parental figures derived from the need to feel safe and secure) and of human information processing (the process used to filter out or let through unwanted information) have been combined to explain loss and bereavement.[1-4]

The bereavement process can be divided into 4 phases:

1. Shock and Numbness: During this initial phase, survivors have difficulty processing the information of the loss; they are stunned and numb.
2. Yearning and Searching: In this phase, there is a combination of intense separation anxiety and disregard or denial of the reality of the loss. This engenders a desire to search for and recover the lost person. Failure of this search leads to repeated frustration and disappointment.
3. Disorganization and Despair: Individuals often report being depressed and have difficulty planning future activities. These individuals are easily distracted and have difficulty concentrating and focusing.
4. Reorganization: This phase overlaps to some degree with the third phase.

The phases modulate to allow existing internalized, representational figures of safety and security to be reshaped, incorporating the changes that have occurred in the bereaved’s life.

References

1. Bowlby J: Processes of mourning. Int J Psychoanal 42: 317-40, 1961. 
   
   
2. Bowlby J: Attachment and Loss. vols. 1-3, New York: Basic Books, Inc., 1969-1980. 
   
   
3. Parkes CM: Bereavement: Studies of Grief in Adult Life. 2nd ed., Madison: International Universities Press Inc., 1987. 
   
   
4. Parkes CM: Bereavement as a psychosocial transition: processes of adaptation to change. J Soc Issues 44 (3): 53-65, 1988. 
   
   

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General Aspects of Grief Therapy

Most of the support that people receive after a loss comes from friends and family, but physicians and nurses can identify and orchestrate mechanisms for support and healing and make an important difference.[1] For those who are experiencing particularly difficult problems in their bereavement, specific interventions may be considered. Psychotherapeutic interventions for grief vary widely, and include individual and group methods. Treatment methods found to be effective with various populations of bereaved individuals include time-limited dynamic psychotherapy, cognitive-behavioral intervention, hypnotherapy, and trauma desensitization.

Grief counseling and grief therapy are distinguished from each other.[2] Grief counseling guides uncomplicated (normal) grief to a healthy completion of the tasks of grieving within a reasonable time frame, usually without a time-limited template. Grief counseling can be provided by professionally trained individuals, or in self-help groups in which bereaved persons offer help to other bereaved persons. All of these services can be offered in individual or group settings. Grief counseling seems to be most useful for those bereaved persons who perceive their families as unsupportive or who, for other reasons, are thought to be at special risk.

The goals of grief counseling as outlined by one author [2] include:

• Helping the bereaved to actualize and to accept the loss, most often by helping him or her to talk about the loss and the circumstances surrounding it.
• Helping the bereaved to identify and to express feelings related to the loss (e.g., anger, guilt, anxiety, helplessness, sadness).
• Helping the bereaved to live without the deceased and to make independent decisions.
• Helping the bereaved to withdraw emotionally from the deceased and to begin new relationships.
• Providing support and time to focus on grieving at critical times such as birthdays and anniversaries.
• Normalizing appropriate grieving and explaining the range of individual differences in this process.
• Providing support in an ongoing manner, usually not on a time-limited basis (as with grief therapy).
• Helping the bereaved to understand his or her coping behavior and style.
• Identifying problematic coping mechanisms and making referrals for professional grief therapy.

Bereavement is among the most disruptive of all life processes, and it is difficult to put an arbitrary limit on the expected duration of bereavement.[3] Grief therapy is used with people who have abnormal or complicated grief reactions (refer to the Complicated Grief section of this summary for more information). The goal of grief therapy is to identify and resolve the conflicts of separation that interfere with the completion of the tasks of mourning. The conflicts of separation may be absent or masked as somatic or behavioral symptoms; delayed, inhibited, excessive, or distorted mourning; conflicted or prolonged grief; or unanticipated mourning (though this is usually not present with cancer deaths).

Grief therapy can be provided on an individual basis or in group therapy. Regardless of setting, a therapeutic contract is established with the patient that defines the time-limited basis of the therapy, any fees, and the expectations and focus of the therapy. If the patient presents with physical complaints, medical illness must be ruled out.

Grief therapy requires talking about the deceased, and recognizing whether there are minimal or exaggerated emotions surrounding the loss. Persistently idealized descriptions of the deceased can be indicators of the presence of more ambivalent, angry feelings. Grief therapy may allow the individual to see that anger, guilt, or other negative or uncomfortable feelings do not preclude more positive ones and vice versa.

The focus of grief therapy is dependent on an assessment of the four tasks of mourning. Human beings have a tendency to make strong affectional bonds or attachments with others.[2] When these bonds are severed, as they are in death, a strong emotional reaction occurs. The tasks of mourning serve as a means whereby grief may be resolved. After one sustains a loss there are certain tasks of mourning that must be accomplished for equilibrium to be established and for the process of mourning to be completed.[2] Adaptation to loss may be seen as involving the following 4 basic tasks:

1. Acceptance of the reality of the loss.
2. Working through and experiencing the physical and emotional pain of grief.
3. Adjusting to an environment in which the deceased is missing.
4. Emotionally relocating the deceased and moving on with life.

It is essential that the grieving person complete these tasks before mourning can be accomplished.

Six tasks of grief [4] have been identified that help focus problem-specific therapeutic interventions for bereaved spouses:

1. Develop the capacity to experience, express, and integrate painful grief-related affects.
2. Use the most adaptive means of modulating painful affects.
3. Establish a continuing relationship with the deceased spouse (not necessarily to decathect from the dead person).
4. Maintain one’s own health and continued functioning.
5. Achieve a successful reconfiguration of altered relationships and understand why others may have difficulty empathizing with the bereaved.
6. Achieve an integrated, healthy self-concept and stable world view.

Complications in grief may arise because of uncompleted grief related to earlier losses. The grief for these previous losses must be managed in order for the current grief to be resolved. Additionally, identification of transitional or linking objects that allow the relationship with the deceased to be maintained externally is useful, as the objects may be interrupting successful completion of the grieving tasks. One author [5] notes that grief therapy includes dealing with resistances to the mourning process, identifying unfinished business with the deceased, and identifying and accommodating secondary losses resulting from the death. Ultimately, the bereaved is helped to accept the finality of the loss and to picture what his or her life will be like after the grief period. It is helpful to acknowledge that repetition may be a part of treatment, but only when in the service of working through the grief.

References

1. Casarett D, Kutner JS, Abrahm J, et al.: Life after death: a practical approach to grief and bereavement. Ann Intern Med 134 (3): 208-15, 2001.  [PUBMED Abstract]
   
   
2. Worden JW: Grief Counseling and Grief Therapy. New York: Springer Publishing Company, 1991. 
   
   
3. Zisook S: Understanding and managing bereavement in palliative care.. In: Chochinov HM, Breitbart W, eds.: Handbook of Psychiatry in Palliative Medicine. Oxford: Oxford University Press, 2000, pp 321-34. 
   
   
4. Shuchter SR, Zisook S: Treatment of spousal bereavement: a multidimensional approach. Psychiatr Ann 16 (5): 295-305, 1986. 
   
   
5. Rando TA: Treatment of Complicated Mourning. Champaign: Research Press, 1993. 
   
   

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Complicated Grief

Complicated or pathological grief reactions are maladaptive extensions of normal bereavement. These maladaptive reactions overlap psychiatric disorders and require more complex, multimodal therapies than uncomplicated grief reactions. Adjustment disorders (especially depressed and anxious mood, or disturbance of emotions and conduct), major depression, substance abuse, and even posttraumatic stress disorder (PTSD) are some of the more common psychiatric sequelae of complicated bereavement. Grief that becomes pathologic is often identifiable by the increased duration of symptomatology, the increased disruption of psychosocial functioning due to the symptoms, or by the intensity of subsyndromal symptoms (e.g., intense suicidal thoughts or acts upon the loss).[1]

Complicated or unresolved grief can take many forms.[2,3] Complications may manifest as absent grief (i.e., grief and mourning processes are totally absent), inhibited grief (a lasting inhibition of many of the manifestations of normal grief), delayed grief, conflicted grief, or chronic grief. Risk factors for pathologic grief include suddenness of loss; gender of the bereaved; and the existence of an intense, overly close, or highly ambivalent relationship to the deceased. Pathologic grief reactions that extend to major depressive episodes should be treated with combined drug and psychotherapeutic interventions, though the efficacy of these combined approaches is untested. The bereaved who maintain long-standing avoidance of any and all reminders of the deceased, who re-experience the loss or the presence of the deceased in illusions or intrusive thoughts or dreams, and startles and panics easily at reminders of the loss might be considered for a PTSD diagnosis (even without meeting all the criteria for a psychiatric diagnosis).[4] Substance abuse in the bereaved is frequently an attempt at self-medication of painful feelings and symptoms (such as insomnia), and can be targeted for drug and psychotherapeutic intervention.

References

1. Rando TA: Treatment of Complicated Mourning. Champaign: Research Press, 1993. 
   
   
2. Rando TA: Grief, Dying, and Death: Clinical Interventions for Caregivers. Champaign: Research Press Company, 1984. 
   
   
3. Raphael B: The Anatomy of Bereavement. New York: Basic Books, Inc., 1983. 
   
   
4. Parkes CM, Relf M, Couldrick A: Counselling in Terminal Care and Bereavement. Baltimore: BPS Books, 1996. 
   
   

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Children and Grief

At one time children were thought of as miniature adults and their behaviors were expected to be modeled as such.[1] Today there is a greater awareness of developmental differences between childhood and other developmental stages in the human life cycle. Differences are recognized between the grieving process of children and that of adults. It is now believed that the real issue for grieving children is not whether they grieve, but how they exhibit their grief and mourning.[1]

The primary difference between bereaved adults and children is that intense emotional and behavioral expressions are not continuous in children. A child’s grief may appear more intermittent and brief than that of an adult, but, in fact, it usually lasts longer.[1-3] The work of mourning in childhood needs to be addressed repeatedly at different developmental and chronological milestones. Since bereavement is a process that continues over time, children will revisit the loss repeatedly, especially during significant life events (e.g., going to camp, graduation from school, marriage, the birth of his or her own children). It is essential that children complete this grieving process, eventually achieving resolution of grief.

Although loss is unique and highly individualized, several factors can influence a child’s grief. This includes the child’s age, personality, stage of development, previous experiences with death, prior relationship with the deceased, the environment, the cause of death, patterns of interaction and communication within the family, stability of family life after the loss, how the child’s needs for sustained care are met, availability of opportunities to share and express feelings and memories, parental styles of coping with stress, and the availability of consistent relationships with other adults.[2-4]

Children do not react to loss in the same ways as adults and may not display their feelings as openly as adults. In addition to verbal communication, other methods of communication in grieving children may include play, drama, art, school work, and stories.[5] Bereaved children may not withdraw into preoccupation with thoughts of the deceased person; they often immerse themselves in activities (e.g., they may be sad one minute and then playing outside with friends the next). Often families incorrectly interpret this behavior to mean the child doesn’t really understand or has already gotten over the death. Neither may be true; childrens’ minds protect them from thoughts and feelings that are too powerful for them to handle. Grief reactions are intermittent because children cannot rationally explore all their thoughts and feelings as adults can. Additionally, children often have difficulty articulating their feelings about grief. A grieving child’s behavior may speak louder than any words he or she could speak. Strong feelings of anger and fears of abandonment or death may be evident in the behaviors of grieving children. Children often play death games as a way of working out their feelings and anxieties in a relatively safe setting. These games are familiar to the children and provide safe opportunities to express their feelings.[1,2]

Death and the events surrounding it are understood differently depending on the age and developmental stage of the child.

Although infants do not recognize death, feelings of loss and separation are part of a developing death awareness. Children who have been separated from their mothers and deprived of nurturing can exhibit such changes as listlessness, quietness, unresponsiveness to a smile or a coo, physical changes (including weight loss), and a decrease in activity and lack of sleep.[6]

In this age range, children often confuse death with sleep and can experience anxiety. In the early phases of grief, bereaved children can exhibit loss of speech and generalized distress.[3,6]

At this age children view death as a kind of sleep; the person is alive, but in some limited way. They do not fully separate death from life and may believe that the deceased continues to live (for instance, in the ground where he or she was buried), and often ask questions about the activities of the deceased person (e.g., how is the deceased eating, going to the toilet, breathing, playing?). Young children can acknowledge physical death but consider it as a temporary or gradual event. Death is reversible and not final (like leaving and returning, or a game of peek-a-boo). Children’s concept of death may involve magical thinking, i.e., the idea that his or her thoughts can cause actions. Children may feel that they must have done or thought something bad to become ill or that a loved one’s death occurred because of some personal thought or wish. In response to death, children under age 5 will often exhibit disturbances in eating, sleeping, and bladder or bowel control.[3,6]

It is not unusual for children this age to become very curious about death, asking very concrete questions about what happens to one’s body when it stops working. Death is personified as a separate person or spirit: a skeleton, ghost, angel of death, or bogeyman. Although death is perceived as final and frightening it is not universal. Children this age begin to compromise, recognizing that death is final and real but mostly happens to the elderly (not to themselves). Grieving children can develop school phobias, learning problems, antisocial or aggressive behaviors, can exhibit hypochondriacal concerns, or can withdraw from others. Conversely, children this age can become overly attentive and clinging. Boys may show an increase in aggressive and destructive behavior (e.g., acting out in school), expressing their feelings in this way rather than by openly displaying sadness. When a parent dies children may feel abandoned by both their deceased parent and their surviving parent, since often the surviving parent is preoccupied with his or her own grief and is less able to emotionally support the child.[3,6]

By the time a child is 9 years of age, death is understood as inevitable and is no longer viewed as a punishment. By the time the child is 12 years of age, death is viewed as final and universal.[3,6]

In American society, many grieving adults withdraw into themselves and limit communication. In contrast, children often talk to those around them (even strangers) as a way of watching for reactions and seeking clues to help guide their own responses. It is not uncommon for children to repeatedly ask baffling questions. For example, a child may ask “I know grandpa died, but when will he come home?” This is thought to be a way of testing reality for the child and confirming the story of the death.

There are 3 prominent themes in the grief expressions of bereaved children:

1. Did I cause the death to happen?
2. Is it going to happen to me?
3. Who is going to take care of me?[2,7]

Did I cause the death to happen?

Children often engage in magical thinking believing they have magical powers. If a mother says in exasperation, “You’ll be the death of me” and later dies, her child may wonder whether he or she actually caused the death. Likewise, when two siblings argue, it’s not unusual for one to say (or think), “I wish you were dead.” If that sibling were actually to die, the surviving sibling might think that his or her thoughts or statements actually caused the death.

Is it going to happen to me?

The death of a sibling or other child may be especially difficult since it strikes so close to the child’s own peer group. If the child also perceives that the death could have been prevented (by either a parent or doctor) the child may think that he or she could also die.

Who is going to take care of me?

Since children are dependent upon parents and other adults for their safety and welfare, a child who is grieving the death of an important person in his or her life might begin to wonder who will provide the care that he or she needs since that person is gone.

There are interventions that may help to facilitate and support the grieving process in children.

Silence about death (which indicates that the subject is taboo) does not help children deal with loss. When discussing death with a child, the explanation should be kept as simple and direct as possible. Each child needs to be told the truth with as much detail as can be comprehended at his or her age and stage of development. Questions should be addressed honestly and directly. Children need to be reassured about their own security (they frequently worry that they will also die, or that their surviving parent will go away). Children’s questions should be answered, making sure that the child processes the information.

Although it is a difficult conversation to initiate with children, any discussion about death must include proper words (e.g., cancer, died, death). Euphemisms (e.g., “he passed away,” “he is sleeping,” “we lost him”) should never be used because they can confuse children and lead to misinterpretations.[3,8]

After a death occurs, children can and should be included in the planning and participation of mourning rituals. As with bereaved adults, these rituals help children memorialize loved ones. Although children should never be forced to attend or participate in mourning rituals, their participation should be encouraged. Children can be encouraged to participate in those aspects of funeral or memorial services with which they feel comfortable. If the child wants to attend the funeral (wake, memorial service, etc.) it is important that a full explanation of what to expect is given in advance. This preparation should include the layout of the room, who might be present (e.g., friends and family members), what the child will see (e.g., a casket, people crying), and what will happen. The surviving parent may be too involved in his or her own grief to give their child the attention needed, therefore, it is often helpful to identify a familiar adult friend or family member who will be assigned to care for the grieving child during the funeral.[8]

There is a wealth and variety of helpful resources (books and videos) that can be shared with grieving children.

1. Worden JW: Children and Grief: When a Parent Dies. New York: The Guilford Press, 1996.
2. Doka KJ, ed.: Children Mourning, Mourning Children. Washington, DC: Hospice Foundation of America, 1995.
3. Wass H, Corr CA: Childhood and Death. Washington, DC: Hemisphere Publishing Corporation, 1984.
4. Corr CA, McNeil JN: Adolescence and Death. New York: Springer Publishing Company, 1986.
5. Corr CA, Nabe CM, Corr DM: Death and Dying, Life and Living. 2nd ed., Pacific Grove: Brooks/Cole Publishing Company, 1997.
6. Grollman EA: Talking About Death: A Dialogue Between Parent and Child. 3rd ed., Boston: Beacon Press, 1990.
7. Schaefer D, Lyons C: How Do We Tell the Children?: Helping Children Understand and Cope When Someone Dies. New York: Newmarket Press, 1988.
8. Wolfelt A: Helping Children Cope with Grief. Muncie: Accelerated Development, 1983.
9. Walker A: To Hell with Dying. San Diego: Harcourt Brace Jovanovich, 1988.
10. Williams M: Velveteen Rabbit. Garden City: Doubleday, 1922.
11. Viorst J: The Tenth Good Thing About Barney. New York: Atheneum, 1971.
12. Tiffault BW: A Quilt for Elizabeth. Omaha: Centering Corporation, 1992.
13. Levine JR: Forever in My Heart: a Story to Help Children Participate in Life as a Parent Dies. Burnsville, NC: Mountain Rainbow Publications, 1992.
14. Knoderer K: Memory Book: a Special Way to Remember Someone You Love. Warminster,Pa: Mar-Co Products, 1995.
15. de Paola T: Nana Upstairs and Nana Downstairs. New York, NY: GP Putnam’s Sons, 1973.

References

1. O'Toole D, Cory J: Helping Children Grieve and Grow: a Guide for Those Who Care. Burnsville, NC: Compassion Books, 1998. 
   
   
2. Corr CA, Nabe CM, Corr DM: Death and Dying, Life and Living. 2nd ed. Pacific Grove, Calif: Brooks/Cole Publishing Company, 1997. 
   
   
3. Fitzgerald H: The Grieving Child: A Parent's Guide. New York: Fireside, 1992. 
   
   
4. DeSpelder LA, Strickland AL: The Last Dance: Encountering Death and Dying. 4th ed. Palo Alto, Calif: Mayfield Publishing Company, 1996. 
   
   
5. Goldman A: ABC of palliative care. Special problems of children. BMJ 316 (7124): 49-52, 1998.  [PUBMED Abstract]
   
   
6. Burnell GM, Burnell AL: Clinical Management of Bereavement: A Handbook for Healthcare Professionals. New York: Human Sciences Press, Inc., 1989. 
   
   
7. Worden JW: Children and Grief: When a Parent Dies. New York: The Guilford Press, 1996. 
   
   
8. Kastenbaum R: Death, Society, and Human Experience. Boston: Allyn and Bacon, 1995. 
   
   

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Cross-Cultural Responses to Grief and Mourning

Grief, whether in response to the death of a loved one, to the loss of a treasured possession, or to a significant life change, is a universal occurrence that crosses all ages and cultures. However, there are many aspects of grief about which little is known, including the role that cultural heritage plays in an individual’s experience of grief and mourning.[1,2] Attitudes, beliefs, and practices regarding death and grief are characterized and described according to multicultural context, myth, mysteries, and mores that describe cross-cultural relationships.[2]

The potential for contradiction between an individual’s intrapersonal experience of grief and his or her cultural expression of grief can be explained by the prevalent (though incorrect), synonymous use of the terms grief (the highly personalized process of experiencing reactions to perceived loss) and mourning (the socially or culturally defined behavioral displays of grief).[3,4]

An analysis of the results of several focus groups, each consisting of individuals from a specific culture, reveals that individual, intrapersonal experiences of grief are similar across cultural boundaries. This is true even considering the culturally distinct mourning rituals, traditions, and behavioral expressions of grief experienced by the participants. Health care professionals need to understand the part cultural mourning practices may play in an individual’s overall grief experience if they are to provide culturally sensitive care to their patients.[1]

In spite of legislation, health regulations, customs, and work rules that have greatly influenced how death is managed in the United States, bereavement practices vary in profound ways depending on one’s cultural background. When assessing an individual’s response to the death of a loved one, clinicians should identify and appreciate what is expected or required by the person’s culture. Failing to carry out expected rituals can lead to an experience of unresolved loss for family members.[5] This is often a daunting task when health care professionals serve patients of many ethnicities.[2]

Helping family members cope with the death of a loved one includes showing respect for the family’s cultural heritage and encouraging them to decide how to commemorate the death. Clinicians consider the following 5 questions particularly important to ask those who are coping with the emotional aftermath of the death of a loved one:

1. What are the culturally prescribed rituals for managing the dying process, the deceased’s body, the disposal of the body, and commemoration of the death?
2. What are the family’s beliefs about what happens after death?
3. What does the family consider an appropriate emotional expression and integration of the loss?
4. What does the family consider to be the gender rules for handling the death?
5. Do certain types of death carry a stigma (e.g., suicide), or are certain types of death especially traumatic for that cultural group (e.g., death of a child)?[6]

Death, grief, and mourning are universal and natural aspects of the life process. All cultures have evolved practices that best meet their needs for dealing with death. Hindering these practices can disrupt the necessary grieving process. Understanding these practices can help clinicians to identify and develop ways to treat patients of other cultures who are demonstrating atypical grief.[7] Given current ethnodemographic trends, health care professionals need to address these cultural differences in order to best serve these populations.[2]

References

1. Cowles KV: Cultural perspectives of grief: an expanded concept analysis. J Adv Nurs 23 (2): 287-94, 1996.  [PUBMED Abstract]
   
   
2. Irish DP, Lundquist KF, Nelson VJ, eds.: Ethnic Variations in Dying, Death, and Grief: Diversity in Universality. Washington, DC: Taylor & Francis, 1993. 
   
   
3. Rando TA: Treatment of Complicated Mourning. Champaign: Research Press, 1993. 
   
   
4. Cowles KV, Rodgers BL: The concept of grief: a foundation for nursing research and practice. Res Nurs Health 14 (2): 119-27, 1991.  [PUBMED Abstract]
   
   
5. McGoldrick M, Hines P, Lee E, et al.: Mourning rituals. Family Therapy Networker 10 (6): 28-36, 1986. 
   
   
6. McGoldrick M, Almedia R, Hines PM, et al.: Mourning in different cultures. In: Walsh F, McGoldrick M, eds.: Living Beyond Loss: Death in the Family. New York: W.W. Norton & Company, 1991, pp 176-206. 
   
   
7. Eisenbruch M: Cross-cultural aspects of bereavement. II: Ethnic and cultural variations in the development of bereavement practices. Cult Med Psychiatry 8 (4): 315-47, 1984.  [PUBMED Abstract]
   
   

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Changes to This Summary (07/21/2004)

The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above.

Editorial changes were made to this summary.

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