National Cancer Institute
Last Modified: June 30, 2011
Health care providers will encounter bereaved 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. Every person is unique, and thus there will be many individual differences in grief experiences. Most people will experience common or normal grief and will cope well; others will experience more severe grief reactions such as prolonged or complicated grief and will benefit from treatment. Some may even find that the cancer experience, although it is difficult and trying, may lead 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 all affect how a person will cope with the loss of a loved one via cancer.
This summary first defines the constructs of grief, bereavement, and mourning. It then distinguishes the grief reactions of anticipatory grief, normal or common grief, stage models of normal grief, and complicated or prolonged grief. Psychosocial and pharmacologic treatments are explained. The important developmental issues of children and grief are presented, and a section on cross-cultural responses to grief and mourning concludes the summary.
The following information combines theoretical and empirical reviews of the general literature on grief, bereavement, and mourning 2 3 4 5 and is not specific to loss via cancer. Where available, studies that have focused on cancer are emphasized.
In this summary, unless otherwise stated, evidence and practice issues as they relate to adults are discussed. The evidence and application to practice related to children may differ significantly from information related to adults. When specific information about the care of children is available, it is summarized under its own heading.
Grief is defined as the primarily emotional/affective process of reacting to the loss of a loved one through death. 1 The focus is on the internal, intrapsychic process of the individual. Normal or common grief reactions may include components such as the following: 2
Grief reactions can also be viewed as abnormal, traumatic, pathologic, or complicated. Although no consensus has been reached, diagnostic criteria for complicated grief have been proposed. 3 (Refer to the Prolonged or Complicated Grief as a Mental Disorder section of this summary for more information.)
Bereavement is defined as the objective situation one faces after having lost an important person via death. 1 Bereavement is conceptualized as the broadest of the three terms and a statement of the objective reality of a situation of loss via death.
Mourning is defined as the public display of grief. 1 While grief focuses more on the internal or intrapsychic experience of loss, mourning emphasizes the external or public expressions of grief. Consequently, mourning is influenced by one's beliefs, religious practices, and cultural context.
There is obvious overlap between grief and mourning, with each influencing the other; it is often difficult to distinguish between the two. One's public expression (i.e., mourning) of the emotional distress over the loss of a loved one (i.e., grief) is influenced by culturally determined beliefs, mores, and values.
Many authors have proposed types of grief reactions. 1 2 Research has focused on normal and complicated grief while specifying types of complicated grief 3 and available empirical support 4 with a focus on the characteristics of different types of dysfunction. 1 Controversy over whether it is most accurate to think of grief as progressing in sequential stages (i.e., stage theories) continues. 5 6 Most literature attempts to distinguish between normal grief and various forms of complicated grief such as chronic grief or absent/delayed/inhibited grief. 1 3 4
Bereavement research has tried to identify these patterns by reviewing available empirical support 1 while also looking for evidence that these grief reactions are unique and not simply forms of major depression, anxiety, or post-traumatic stress. 7
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. 10
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. 9
Several studies 11 12 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. 9 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. 13 This suggests that it was 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.
In general, normal or common grief reactions are marked by a gradual movement toward an acceptance of the loss and, although daily functioning can be very difficult, managing to continue with basic daily activities. Normal grief usually includes some common emotional reactions that include emotional numbness, shock, disbelief, and/or denial often occurring immediately after the death, particularly if the death is unexpected. Much emotional distress is focused on the anxiety of separation from the loved one, which often results in yearning, searching, preoccupation with the loved one, and frequent intrusive images of death. 2
Such distress can be accompanied by crying; sighing; having dreams, illusions, and even hallucinations of the deceased; and seeking out things or places associated with the deceased individual. Some bereaved people will experience anger, will protest the reality of the loss, and will have significant periods of sadness, despair, insomnia, anorexia, fatigue, guilt, loss of interest, and disorganization in daily routine. 2
Many bereaved persons will experience highly intense, time-limited periods (e.g., 2030 minutes) of distress, variously called grief bursts or pangs. Sometimes these pangs are understandable reactions to reminders of the deceased person, and at other times they seem to occur unexpectedly. 2
Over time, most bereaved people will experience symptoms less frequently, with briefer duration, or with less intensity. Although there is no clear agreement on any specific time period needed for recovery, most bereaved persons experiencing normal grief will note a lessening of symptoms at anywhere from 6 months through 2 years postloss. Normal or common grief appears to occur in 50% to 85% of persons following a loss, is time-limited, begins soon after a loss, and largely resolves within the first year or two.
A number of theoretically derived stage models of normal grief have been proposed. 14 15 16 17 Most models hypothesize a normal grief process differentiated from various types of complicated grief. Some models have organized the variety of grief-related symptoms into phases or stages, suggesting that grief is a process marked by a series of phases, with each phase consisting of predominant characteristics. One well-known stage model, 18 focusing on the responses of terminally ill patients to awareness of their own deaths, identified the stages of denial, anger, bargaining, depression, and acceptance. Although widely used, this model has received little empirical support.
A more recent stage model of normal grief 2 organizes psychological responses into four stages: numbness-disbelief, separation distress, depression-mourning, and recovery. 5 Although presented as a stage model, this model explains "it is important to emphasize that the idea that grief unfolds inexorably in regular phases is an oversimplification of the highly complex personal waxing and waning of the emotional process." 2 Bereavement researchers have found empirical support for this four-stage model, 5 although other researchers have questioned these findings. 19 20
Since the time of Sigmund Freud, many authors have proposed various patterns of pathologic or complicated grief. 1 2 Some proposed patterns come from extensive clinical observation 20 supported by various theories (e.g., psychodynamic defense mechanisms and personality traits associated with patterns of attachment). 21
Empirical reviews have not found evidence of inhibited, absent, or delayed grief and instead emphasize the possibility that these patterns are better explained as forms of human resilience and strength. 6 Evidence supports the existence of a minimal grief reactiona pattern in which persons experience no, or only a few, signs of overt distress or disruption in functioning. This minimal reaction is thought to occur in 15% to 50% of persons during the first year or two after a loss. 6
Empirical support also exists for chronic grief, a pattern of responding in which persons experience symptoms of common grief but do so for a much longer time than the typical year or two. Chronic grief is thought to occur in about 15% of bereaved persons. 6 It may look very much like major depression, generalized anxiety, and possibly post-traumatic stress.
In addition to these theoretical and empirically supported patterns of grief reactions, much emphasis has been placed on distinguishing normal grief from complicated grief. Most clinicians will be focused on understanding the differences between normal and complicated grief reactions: What is the difference? Under what circumstances should I refer a patient/family member for grief therapy?
The Diagnostic and Statistical Manual for Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) includes bereavement as a diagnosable code to be used when bereavement is a focus of clinical attention following the death of a loved one. In current form it does not consist of formal diagnostic criteria and is generally considered a normal reaction to loss via death. In an attempt to clearly distinguish between normal grief and complicated grief, a consensus conference 22 has developed diagnostic criteria for a mental disorder referred to as prolonged grief disorder, proposing that it be included in the next revision of the DSM. 23
Following are the proposed diagnostic criteria for complicated grief: 24
These criteria have not been formally adopted, and thus there is no formal diagnostic category for prolonged grief disorders in the DSM. However, these criteria help in specifying symptoms, the severity of symptoms, and how to distinguish complicated grief from normal grief. Not all health care professionals agree that the duration of "at least 6 months" is the most accurate number, suggesting that the time period may be too short and that 6 months to 2 years may be more accurate. 25
One study 1 of 248 caregivers of terminally ill cancer patients investigated the presence of predeath complicated grief and its correlates. Results revealed the following variables associated with higher levels of predeath complicated grief:
Of these correlates, pessimistic thinking and severity of stressful life events were independent predictors of predeath complicated grief.
Most research has focused on spousal/partner loss and is not uniquely focused on death via cancer.
Although theory suggests that a sudden, unexpected loss should lead to more difficult grief, empirical findings have been mixed. 2 The impact of an unexpected loss seems to be moderated by self-esteem and perceived control: Bereaved persons with low self-esteem and/or a sense that life is uncontrollable seem to suffer more depression and somatic complaints after an unexpected death than do bereaved persons with higher self-esteem and/or a sense of control. 2
Attachment theory 3 has suggested that the nature of one's earliest attachments (typically with parents) predicts how one would react to loss. Bereaved persons with secure attachment styles would be least likely to experience complicated grief, while those with either insecure styles or anxious-ambivalent styles would be most likely to experience negative outcomes. 4
In a study of 59 caregivers of terminally ill spouses, the nature of their attachment styles and marital quality were evaluated. Results showed that caregivers with insecure attachment styles or in marriages that were "security-increasing" were more likely to experience symptoms of complicated grief. 5 Persons with a tendency toward "ruminative coping," a pattern of excessively focusing on one's symptoms of distress, have also been shown to experience extended depression after a loss. 6
However, empirical results about the benefits of religion in coping with death tend to be mixed, some showing positive benefit and others showing no benefit or even greater distress among the religious. 7 Studies that show a positive benefit of religion tend to measure religious participation as regular church attendance and find that the benefit of participation tends to be associated with an increased level of social support. Thus it appears that religious participation via regular church attendance and the resulting increase in social support may be the mechanisms by which religion is associated with positive grief outcomes.
In general, men experience more negative consequences than women do after losing a spouse. Mortality rates of bereaved men and women are higher for both men and women compared to nonbereaved people; however, the relative increase in mortality is higher for men than for women. Men also tend to experience greater degrees of depression and greater degrees of overall negative health consequences than do women after a spouse's death. 2 Some researchers have suggested that the mechanism for this difference is the lower level of social support provided to bereaved men than that provided to bereaved women.
In general, younger bereaved persons experience more difficulties after a loss than do older bereaved persons. These difficulties include more severe health consequences, grief symptoms, and psychological and physical symptoms. 2 The reason for this age-related difference may be the fact that younger bereaved persons are more likely to have experienced unexpected and sudden loss. However, it is also thought that younger bereaved persons may experience more difficulties during the initial period after the loss but may recover more quickly because they have more access to various types of resources (e.g., social support) than do older bereaved persons. 2
Social support is a highly complex construct, consisting of a variety of components (perceived availability, social networks, supportive climate/environment, support seeking) and measured in a variety of ways. However, as mentioned above, lack of social support is a risk factor for negative bereavement outcomes: It is both a general risk factor for negative health outcomes and a bereavement-specific risk factor for negative outcomes after loss. 2 For example, after the death of a close family member (e.g., spouse), many persons report a number of related losses (often unanticipated) such as the loss of income, lifestyle, and daily routineall important aspects of social support.
The following information concerns treatment of grief after the death of a loved one, not necessarily death as a result of cancer.
Some controversy continues about whether normal or common grief reactions require any intervention by medical or mental health professionals. Researchers disagree about whether credible evidence on the efficacy of grief counseling exists. 1 2 3 4 Most bereaved persons experience painful and often very distressing emotional, physical, and social reactions; however, most researchers agree that most bereaved persons adapt over time, typically within the first 6 months to 2 years. Thus, the question is whether it is wise to devote professional time to interventions for normal grief when resources are limited and the need for accountability is great.
One approach is to use a spectrum of interventions, from prevention to treatment to long-term maintenance care. 5 In this model, preventive interventions could be one of the following:
In contrast, formal treatment of bereaved persons would be reserved for those identified as experiencing complicated or pathologic grief reactions. Finally, longer-term maintenance care may be warranted for persons experiencing chronic grief reactions.
Another approach has focused on families. 6 7 This brief, time-limited approach (four to eight 90-minute sessions over 9 to 18 months) identifies families at increased risk for poor outcomes and intervenes, with emphasis on improving family cohesion, communication, and conflict resolution. Adaptive coping, with efforts to strengthen family solidarity, and frequent affirmation of family strengths are emphasized.
In a randomized controlled trial, 8[Level of evidence: I] 183 (71%) of 257 families screened were identified as at risk for poor outcomes; 81 (44%) of these at-risk families participated in the trial. Family functioning was classified into one of five groups:
Participants classified as hostile (n = 19), sullen (n = 21), or intermediate (n = 41) were randomly assigned to either the treatment group or a no-treatment control group. 8
Results showed modest reductions in distress at 13 months postdeath for all participants, with more significant reductions in distress and depression in family members who had initially higher baseline scores on the Brief Symptom Inventory and Beck Depression Inventory. 8 Overall, global family functioning did not change, yet participants classified as sullen or intermediate showed more improvement than those classified as hostile. Results recommend caution in dealing with hostile families to avoid increasing conflict in such families. 8
With the development of proposed diagnostic criteria for complicated grief (i.e., prolonged grief disorder), targeted interventions have been tested in two randomized controlled trials. Both studies are of interventions for bereaved persons whose loved ones died from mixed (not necessarily cancer-related) causes.
The first study 9[Level of evidence: I] compared complicated grief treatment (CGT) with interpersonal psychotherapy (IPT) in 83 women and 12 men, aged 18 to 85 years prescreened, who met the criteria for complicated grief. Both interventions consisted of 16 weekly sessions spread out over an average of 19 weeks per participant. IPT is a widely researched, empirically supported treatment intervention for depression.
IPT therapists used an intervention delivered as described in a published manual, 10 using an introductory phase, a middle phase, and a termination phase. During the introductory phase, symptoms were identified, and an inventory of interpersonal relationships was completed, with a focus on interpersonal problems. Connections between symptoms, interpersonal problems, and grief were identified and discussed. 9
During the middle phase, these interpersonal problems and issues of grief were addressed. Patients were encouraged to develop a realistic relationship with the deceased, to recognize both positive and negative aspects of the loss, and to invest in new, positive relationships. 9
During the termination phase, gains were identified and reviewed, future plans were made and feelings about termination were discussed. 9
CGT was also delivered according to a manual protocol, also organized into three phases. In the introductory phase, therapists described the distinctions between normal and complicated grief. They also explained the concept of dual processing, or the notion that grief progresses best when attention alternates between (a) a focus on loss and (b) a focus on restoration and future. Thus, the introductory phase included both a discussion of the loss and an identification of future goals and aspirations. 9
Throughout the middle phase, attention alternated between the themes of loss/grief and future/restoration. A unique characteristic of CGT was the concept of revisiting loss via retelling the story of the death. This concept was particularly important for persons inclined to avoid thinking about the trauma of the loss. Specific procedures that were modeled after the "imaginal exposure" component of interventions for post-traumatic stress disorder were utilized for retelling. 9
The termination phase for the CGT group was similar to that for the IPT group. 9
Both treatments showed improvements in symptoms, with the CGT group showing a larger percentage of patients responding (51%) than the IPT group (28%). The CGT group also seemed to respond quicker than the IPT group. A total of 45% of all study participants were taking antidepressants. No significant differences in outcomes were found for those on antidepressant medications. 9
The second study of complicated grief 11[Level of evidence: II] compared cognitive-behavioral therapy (CBT), offered in two different sequences, with supportive counseling for 54 bereaved persons, all prescreened and found to be experiencing complicated grief.
With researchers hypothesizing that maladaptive thoughts and behaviors are an important component of complicated grief, the CBT interventions consisted of two components (exposure therapy and cognitive restructuring) designed to directly impact grief-related thoughts and behaviors. 11 Participants were randomly assigned to receive one of three treatments:
Results showed that both CBT groups experienced more improvement in symptoms of complicated grief and general psychopathology than did the supportive counseling group. In component analyses, the exposure therapy component was more effective than the cognitive restructuring component; the sequence of exposure therapy first, followed by cognitive restructuring, produced the best results. 11
The clinical decision on whether to provide pharmacologic treatment for depressive symptoms in the context of bereavement is controversial and not very extensively studied. Some health care professionals argue that distinguishing the sadness and distress of normal grief from the sadness and distress of depression is difficult, and pharmacologic treatment of a normal emotional process is not warranted. However, three open-label trials and one randomized controlled trial of treatment of bereavement-related depression with antidepressants have been reported (see Table 1).
The open-label trials evaluated desipramine, 12 nortriptyline, 13 and bupropion sustained release. 14[Level of evidence: II] The studies included patients experiencing depressive symptoms after the deaths of their loved ones. The depressive symptoms were evaluated using the Hamilton Depression Rating Scale (HDRS). All studies evaluated intensity of grief using select grief assessment questionnaires.
Data from these studies suggest that antidepressants are well tolerated and improve symptoms of depression. Data also suggest that the intensity of grief improved but that the improvement was consistently less in comparison with the symptoms of depression. Limitations of these studies include open-label treatment and small sample sizes.
The only randomized controlled study conducted to date 15[Level of evidence: I] compared nortriptyline with placebo for the treatment of bereavement-related major depressive episodes. Nortriptyline was also compared with two other treatments, one combining nortriptyline with IPT and the other combining placebo with IPT. Eighty subjects, aged 50 years or older, were randomly assigned to one of the four treatment groups: nortriptyline (n = 25), placebo (n = 22), nortriptyline plus IPT (n = 16), and placebo plus IPT (n = 17).
The 17-item HDRS was used to assess depressive symptoms. Remission was defined as a score of 7 or lower for 3 consecutive weeks. The remission rates for the four groups were as follows: nortriptyline alone, 56%; placebo alone, 45%; nortriptyline plus IPT, 69%; placebo plus IPT, 29%. Nortriptyline was superior to placebo in achieving remission (P < .03). 15
The combination of nortriptyline with IPT was associated with the highest remission rate and highest rate of treatment completion. The study did not show a difference between IPT and placebo, possibly owing to specific aspects of the study design, including short duration of IPT (mean no. of days, 49.5) and small sample size. 15 The high remission rate with placebo was another important limitation of the study. Consistent with previous open-label studies and for all four groups, improvement in grief intensity was less than improvement in depressive symptoms.
In summary, all of the antidepressant studies conducted to date suggest that the magnitude of reduction and rate of improvement in grief symptoms are slower than the decrease in magnitude and rate of improvement in depressive symptoms. One group of researchers 15 provides possible explanations for this phenomenon, arguing that depressive symptoms may be more responsive to pharmacological intervention because they are directly related to biological dysregulation and neurochemical changes. The other possibility is that the persistence of grief without depressive symptoms is not pathologicalit might be a normal and necessary consequence of the bereavement process.
|Reference Citation||Study Type||Subjects||Age (y)||Treatment||Results|
|Open label||8 women, 2 men||Mean not reported; range, 2665||Desipramine||7 subjects much improveda; 2 subjects minimally improved; 1 dropout|
|Open label||8 women, 5 men||Mean, 71.1; range, 6178||Nortriptyline||Mean HDRS scores decreased 67.9%; no dropouts|
|Open label||17 women, 5 men||Mean, 63.5; range, 4583||Bupropion SR||Mean HDRS scores decreased 54%; 8 dropouts|
|b||Randomized controlled||58 women, 22 men||Mean range for 4 groups, 63.269.5||Nortriptyline vs. placebo vs. NTP+IPT or PLA+IPT||NTP statistically significant compared to PLA; NTP+IPT group had lowest attrition rate|
|HDRS = Hamilton Depression Rating Scale; IPT = interpersonal psychotherapy; NTP = nortriptyline; PLA = placebo; SR = sustained release.|
At one time, children were considered 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 between the grieving process for children and the grieving process for adults are recognized. 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 bereaved children is that intense emotional and behavioral expressions are not continuous in children. A child's grief may appear more intermittent and briefer than that of an adult, but in fact a child's grief usually lasts longer. 1 2 3
The work of mourning in childhood needs to be addressed repeatedly at different developmental and chronological milestones. Because bereavement is a process that continues over time, children will revisit the loss repeatedly, especially during significant life events (e.g., going to camp, graduating from school, marrying, and experiencing the births of their own children). Children must complete the grieving process, eventually achieving resolution of grief.
Children do not react to loss in the same ways as adults and may not display their feelings as openly as adults do. In addition to verbal comm