Health care providers will encounter bereaved individuals throughout their personal and professional lives.[1] Individual diversity, family and social networks, and micro- and macrocultural influences contribute to the way one experiences and expresses grief. The progression from advanced cancer to death is experienced in different ways by different people. Most people will experience common or normal grief and will, with time, adjust to the loss; 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 for the patient and others in the patient’s family and social network.
Multiple factors may influence how an individual or a social network adjusts to a death. How people grieve depends on the personality of the grieving individual and his or her relationship with the person who died. The following factors affect how a person will express grief externally and adjust to the loss internally:[2]
Even the sense of a relationship’s completeness can influence the grieving process.[2] The effect of grief on the patients themselves and on the loss of their future should also be considered by providers and patients’ social networks.
This summary first defines the constructs of grief, mourning, and bereavement. It then distinguishes the grief reactions of anticipatory grief, prolonged complicated grief, normal or common grief, models of normal grief, and complicated or prolonged grief. Psychosocial and pharmacological 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 [3-6] 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] For more information, see the Prolonged, Persistent, or Complex Grief section.
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. The 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.
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 defined in this section and as a statement of the objective reality of a situation of loss via death.
Researchers and clinicians have proposed models for grief and 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] Research has noted that while there may be phases or domains of grief, there is not a preestablished linear process through which an individual moves to resolve the grief.[5,6] Most literature attempts to distinguish between normal grief and various forms of complicated grief such as chronic grief or grief that is absent, delayed, or inhibited.[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]
Anticipatory grief refers to a grief reaction that occurs in anticipation of an impending loss.[8] Anticipatory grief is becoming increasingly recognized as an issue that can heighten distress for both patients and their social networks. 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.”[9]
Anticipatory grief has been empirically associated with escalated distress, pain, and medical complications.[10] When anticipatory grief needs are met, individuals are less likely to experience these negative outcomes at the end of life.[11]
One study reported that parents who felt prepared for their child’s end of life had improved social functioning in the first 2 years of their bereavement.[18]
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 or common grief appears to occur in 50% to 85% of persons after they have experienced a loss.[19] 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:[2]
Some bereaved people will experience anger, protest the reality of the loss, and have significant periods of the following:[2]
Many bereaved persons will experience highly intense, time-limited periods (e.g., 20–30 minutes) of distress, variously called grief bursts, pangs, or waves. Sometimes these pangs are reactions to reminders of the deceased, such as major cultural or social holidays, the anniversary of the patient’s death, or giving away items that belonged to the individual. However, at other times, the pangs may 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 after about 6 months. However, there may be a significant difference between the expression of grief and the experience of grief. Time lines related to the expression of grief:
A number of theoretically derived models of normal grief have been proposed.[20-23] Most models hypothesize a normal grief process differentiated from various types of complicated grief. Some models have organized grief-related symptoms into phases or stages, suggesting that grief is a process marked by a series of phases with predominant characteristics. The most well-known model was developed for medical student education and used a series of clinical interviews with terminally ill patients.[24] In this model, the five stages of grief were identified as denial, anger, bargaining, depression, and acceptance. However, this model has limited empirical support.[25] After initial development, the model was reconceptualized from stages of grief to domains of grief, with the understanding that an individual may move back and forth among the domains without any expectation of a predefined path or progression that is implied by the term stages.[26]
In a 2-year study of the stage theory of grief, results suggested that a more common pathway is disbelief, yearning, anger, depression, and acceptance, and that these negative psychosocial issues peak at approximately 6 months postloss.[5]
An adapted stage model of normal grief [2] organizes psychological responses into four stages:[2]
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]
Another theory proposes the following four stages:[15,27-29]
Bereavement researchers have found empirical support for this four-stage model,[5] with particular emphasis on the timing of grief. Primary grief indicators peak at approximately 6 months postloss, after which the negative grief indicators begin to decline. This suggests that individuals who are still experiencing elevated levels of grief after that time may benefit from an escalated response from mental and physical health care providers.
Other researchers have conceptualized grief as tasks rather than stages. One investigator identified four tasks of mourning that help an individual continue to feel in control of his or her world, despite the destabilization that occurs with a loss.[30] Also outlined are six mediators that influence how well someone is able to complete the tasks. These tasks include the following:[31]
In this model, the tasks may occur in any order without a fixed progression; however, for successful mourning to occur, the person must be able to achieve all four tasks.
There is a significant overlap between the behavioral manifestations associated with the grieving process and symptoms of depression such as insomnia, feelings of guilt, ruminations, and lack of motivation. The fourth revised edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) advised clinicians to refrain from diagnosing major depression in individuals within the first 2 months following the death of a loved one in what was referred to as the “bereavement exclusion.” The fifth edition of the DSM (DSM-5) eliminated the bereavement exclusion in the diagnosis of major depression.[32] This change was added to recognize that in vulnerable individuals, grief can precipitate major depression within a short time and can be potentially lethal.
DSM-5 carefully outlines the features of a normal grieving process as compared with a major depressive episode, as follows:[32]
DSM-5 emphasizes that although depression is a normal consequence of bereavement, major depression should not be diagnosed in the context of a normal grieving process. It also emphasizes that major depression can and should be diagnosed when symptoms and features of depression are present and clearly distinguishable from a normal grieving process. DSM-5 also created a candidate disorder, persistent complex bereavement disorder, recognizing the presence of a prolonged and complicated grief reaction in vulnerable individuals.[32] This complicated grief reaction is recognized in the International Classification of Diseases and Related Health Problems, 11th Revision (ICD-11), as prolonged grief disorder.
Many authors throughout history have proposed various patterns of normal grief compared with pathologic or complicated grief.[1,2] Some proposed patterns come from extensive clinical observation [33] supported by various theories (e.g., personality traits associated with patterns of attachment).[34]
These patterns are described in comparison with normal grief and highlight deviations from the normal patterns. Authors have developed a wide variety of theories and descriptive labels for abnormal grief patterns, but these labels have very limited empirical validity:
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 reaction—a 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 approximately 15% of persons during the first 1 or 2 years after a loss.[6] This minimal reaction may be particularly apparent in someone who has a mixed relationship with the deceased, or in someone who has intellectual disabilities or emotional expression difficulties, such as autism spectrum disorder.[35] An observed minimal grief reaction should be interpreted with caution because the expression of grief may not adequately reflect the internal experience of grief.
Empirical support also exists for chronic or complicated grief, a pattern of responding in which persons experience symptoms of common grief but do so for a much longer time than the typical 1 or 2 years. Chronic or complicated grief is thought to occur in about 15% to 30% of bereaved persons.[6] It may look very much like major depression, generalized anxiety, and possibly post-traumatic stress. However, these terms have fallen out of favor in the treatment community, replaced by the updated and more specific diagnostic criteria of DSM-5 (persistent complex bereavement disorder) and ICD-11 (prolonged grief disorder).[36]
DSM-5 and ICD-11 include bereavement as a diagnosable code:
There has been some concern that the DSM-5 diagnosis of depression removed bereavement as a rule-out, opening the door for medicating bereavement as soon as 2 weeks postloss. However, depression and prolonged grief are two distinct diagnoses and appear to respond uniquely to treatment.[37,38] For more information, see the Treatment section.
Complicated grief differs from normal and uncomplicated grief, not in terms of the nature of the grief reaction, but in terms of the distress and disability caused by these reactions and their persistence and pervasiveness.[39]
Following are the proposed DSM-5 diagnostic criteria for the prolonged and complicated grief reaction termed persistent complex bereavement disorder.[40]
While some of the DSM and ICD diagnostic criteria for this disorder differ slightly, a number of key domains overlap, including separation distress, elevated focus on the deceased, difficulty with acceptance of the death, and disengagement from future-oriented goals.
Quality engagement at the cancer patient’s end of life appears to be critical for decreasing the likelihood of survivors developing prolonged grief disorder or persistent complex bereavement disorder. Achieving acceptance of the death, and engaging in a meaningful goodbye, is more important than the survivor being physically present at the time of the patient’s death.[41] With a traumatic or unexpected death, the lack of meaningful communication at the end of life may contribute to a survivor’s elevated prolonged grief disorder or persistent complex bereavement disorder.[42]
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.
Other research has focused on predictors of outcomes such as symptoms of depression and overall negative health consequences. Three categories of variables have been investigated:
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]
Theory has proposed that strong religious beliefs and participation in religious activities could provide a buffer to the distress of loss, via two different mechanisms:
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] perhaps because 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 routine—all important aspects of social support.
Relatively few studies examining grief focus specifically on oncology professionals. Twenty Canadian oncologists were interviewed at different stages in their careers in an empirical study of the impact of grief.[1] The researchers found that oncologists’ grief was uniquely influenced by their responsibility for their patients and, in addition to sadness, included feelings of powerlessness, self-doubt, guilt, and failure. Oncologists described a coping strategy of compartmentalization as well as negative consequences, including effects on treatment decisions and emotional and physical withdrawal from patients. Relational factors associated with a difficult patient loss included:
Contextual factors included:
Cultural issues included stigma around death and dying, perceived weakness of showing affects, and focus on cure.
A study of Israeli oncologists reported similar findings, but with more attention on close relationships with patients’ families and the impact of the patients’ deaths on children.[2] On the positive side, oncologists have reported that patient deaths have given them a better perspective on life, including what is important to them, and motivation to improve patient care (e.g., limiting excessive treatments at the end of life).[3]
Both male and female physicians in the Canadian study cited above felt that acknowledgment and expression of grief was more culturally acceptable for female physicians than for male physicians,[4] a finding that was also seen in another study.[5] A study examining the effects of gender on grief reactions and burnout among oncologists showed that female oncologists reported more grief and emotional distress in response to patient deaths.[6] Higher levels of grief were associated with greater levels of distress in both men and women who reported high levels of burnout, but this association was also seen at moderate levels of burnout for men, suggesting that men with burnout may be more vulnerable than women to grief and distress.
Another study of Canadian oncologists reported that a number of strategies were used to cope with patient death, including the following:[7]
Barriers identified for oncologists in coping with patient deaths include:[5]
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.[1-4] 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 did those classified as hostile. Results recommend caution in dealing with hostile families to avoid increasing intrafamily conflict.[8]
With the development of proposed diagnostic criteria for complicated grief (i.e., prolonged grief disorder), targeted interventions have been tested in several randomized controlled trials. These studies are of interventions for bereaved persons whose loved ones died from mixed (not necessarily cancer-related) causes.
Complicated grief is characterized by maladaptive thoughts and behaviors. Psychosocial interventions focus on these aspects of complicated grief and use cognitive-behavioral strategies to directly impact grief-related thoughts and behaviors. Such grief-focused interventions are adaptations of cognitive-behavioral therapy (CBT) and incorporate strategies such as exposure therapy and cognitive restructuring [9][Level of evidence: II]; [10] or integration of certain aspects of interpretive therapy [11,12] or interpersonal therapy [13][Level of evidence: I] in the CBT sessions.
Table 1 describes the interventions that have shown promise in randomized controlled trials. The interventions are adaptations of CBT but are specifically designed to treat complicated grief. These interventions include individual therapy, group therapy, and therapy sessions delivered via the Internet. Participants in these studies met criteria for complicated grief. Control conditions included active controls (such as interpersonal therapy or supportive counseling) or wait-list controls with delayed treatment.
| Reference Citation | Intervention | Control | Sample | Mean Age (y) | Primary Outcome Measure | Results |
|---|---|---|---|---|---|---|
| CBT = cognitive behavioral therapy; CGI = Clinical Global Impression; CGT = complicated grief treatment; CR = cognitive restructuring; ET = exposure therapy; ICG= Inventory of Complicated Grief; IES = Impact of Event Scale; IPT = interpersonal psychotherapy; PG-13 = prolonged grief–13; PG-CBT = integrative cognitive behavioral therapy for prolonged grief; SC = supportive counseling; TRIG = Texas Revised Inventory of Grief. | ||||||
| Shear et al., 2014 [14] | Individual therapy; CGT: CBT + elements of IPT; 16 wkly manual-based sessions | IPT; 16 wkly sessions | N = 151, older patients only (age ≥60 y) | 66.1 | CGI scale | Response rate of CGT group (70.5%) was more than twice that of IPT group (32.0%). |
| Shear et al., 2005 [13] | Individual therapy; CGT: CBT + elements of IPT; 16 wkly manual-based sessions | IPT; 16 wkly sessions | N = 102 | 48 | CGI scale | Response rate of CGT group (51%) was twice that of IPT group (27%). |
| Boelen et al., 2007 [9] | Individual therapy; CBT + elements of ET, and CBT + elements of CR; 12 wkly manual-based sessions | SC; 12 wkly sessions | N = 54 | 44 | ICG scale | Both CBT groups (ET and CR) showed better response than SC group. ET was better than CR. |
| Rosner et al., 2014 [15] | Individual therapy; PG-CBT: CBT + psychoeducation on prolonged grief + elements of ET; 20–25 wkly manual-based sessions | Wait list (delayed treatment) | N = 51 | 47.5 | PG-13 scale | For grief and other outcomes, PG-CBT group showed significant improvement compared with control group. |
| Piper et al., 2007 [12] | Group therapy; time-limited, short-term interpretive therapy focused on enhancing patient insights about conflicts and trauma associated with loss | Group therapy; supportive, short-term | N = 135 | 45.2 | ICG, IES, and TRIG | Both groups showed improvement. Groups with higher percentage of patients with mature relationships showed better improvement. |
| Wagner et al., 2006 [16] | Internet-based CBT + elements of exposure to bereavement cues and CR; 5-wk intervention with 2 wkly sessions | Wait list (delayed treatment) | N = 55 | 37 | IES and failure-to-adapt scale | Significant improvement for all outcomes in Internet-based CBT group compared with control group, at end of treatment and 3 mo posttreatment. |
The clinical decision on whether to provide pharmacological treatment for depressive symptoms in the context of bereavement is controversial and not 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 pharmacological treatment of a normal emotional process is not warranted. However, three open-label trials and two randomized controlled trials have demonstrated that antidepressant treatment can improve depression symptomatology associated with bereavement (see Table 2).
The open-label trials evaluated desipramine,[17] nortriptyline,[18] and bupropion sustained release in patients experiencing grief with depression symptoms after the deaths of their loved ones.[19][Level of evidence: II]
Data from these studies suggest that antidepressants are well tolerated and improve symptoms of depression with limited impact on grief intensity. The intensity of grief improved in these studies, but it was substantially less compared to improvement in depression symptoms. Limitations of these studies include open-label treatment and small sample sizes.
Two randomized controlled trials investigated combined treatment—antidepressant treatment combined with grief-directed psychotherapy—in bereaved individuals with comorbid depression symptoms.[20][Level of evidence: I]; [21] These studies compared the combined treatment with antidepressant alone, placebo alone, and psychotherapy with placebo. Both trials showed that the combined treatment had the best overall outcomes compared with all other groups (see Table 2).
One randomized controlled study [20][Level of evidence: I] compared nortriptyline with placebo for the treatment of bereavement-related major depressive episodes. Nortriptyline was compared with two other treatments, one combining nortriptyline with interpersonal psychotherapy (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 Hamilton Depression Rating Scale (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).[20]
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.[20] 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.
Another randomized controlled study (N = 395) enrolled patients with complicated grief and investigated the antidepressant citalopram and complicated grief treatment (CGT) to treat grief intensity and comorbid depression symptoms.[21] Four treatment groups were compared: citalopram alone (n = 101), placebo alone (n = 99), citalopram with CGT (n = 99), and CGT with placebo (n = 96). All participants received pharmacotherapy following a specific protocol, and participants in the CGT groups received manual-based CGT in 16 concurrent weekly sessions. The primary outcome measure was a complicated grief–anchored Clinical Global Impression (CGI) scale. Depressive symptomatology was measured using the Quick Inventory of Depressive Symptomatology–Self-Report (QIDS-SR) questionnaire.
Grief-intensity responses for the four groups were as follows: placebo alone, 54.8%; citalopram alone, 69.3%; CGT plus placebo, 82.5%; and citalopram plus CGT, 83.7%. Participants’ response in the CGT-plus-placebo group was substantially better than that in the placebo-alone group (82.5% vs. 54.8%), showing the efficacy of CGT as a treatment for complicated grief. The addition of citalopram to CGT did not significantly improve grief outcomes (citalopram plus CGT vs. CGT plus placebo, 83.7% vs. 82.5%). However, the addition of citalopram to CGT led to a significant decrease in comorbid depression symptoms compared to the CGT-plus-placebo group. Notably, adding CGT to citalopram substantially improved grief-intensity outcomes (citalopram plus CGT vs. citalopram alone, 83.7% vs. 69.3%), suggesting the importance of CGT as the primary treatment for the complicated grief process.[21]
In summary, the antidepressant studies conducted to date suggest that combining antidepressant treatment with grief-directed therapy is necessary, especially for patients struggling with complicated grief with comorbid depressive symptomatology. Antidepressants alone have a limited impact on grief intensity but are critical to reduce depressive symptomatology. Combining antidepressants with grief-directed therapy improves both depression symptoms and grief intensity.
| Reference Citation | Intervention | Subjects | Age (y) | Treatment Groups | Results |
|---|---|---|---|---|---|
| CGT = complicated grief treatment; CIT = citalopram; IPT = interpersonal psychotherapy; NTP = nortriptyline; PLA = placebo. | |||||
| aSee text for details. | |||||
| Reynolds et al., 1999 [20]a | NTP and IPT | 58 women, 22 men | Mean range for 4 groups, 63.2–69.5 | NTP alone vs. PLA alone vs. NTP+IPT vs. PLA+IPT | NTP+IPT group had highest remission rate and lowest attrition rate. |
| Shear et al., 2016 [21]a | CIT and CGT | 308 women, 87 men | Mean range for 4 groups, 52.1–53.9 | CIT alone vs. PLA alone vs. CIT+CGT vs. CGT+PLA | CIT+CGT group had highest response rate. Addition of CIT to CGT had minimal further impact on grief intensity but led to statistically significant reduction in depression. |
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; in fact, a child’s grief usually lasts longer.[1-3]
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.
Although the experience of loss is unique and highly individualized, several factors can influence a child’s grief:[2-4]
Children do not react to loss like adults do and may not display their feelings as openly as adults do. In addition to verbal communication, grieving children may employ 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). Families often incorrectly interpret this behavior to mean the child does not really understand or has already gotten over the death. Neither assumption may be true; children’s minds protect them from thoughts and feelings that are too powerful for them to handle.
Grief reactions are intermittent because children cannot explore all of their thoughts and feelings as rationally 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 fear 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]
A child’s understanding of death and the events surrounding it depends on the child’s age and developmental stage (see Table 3).
Although infants do not recognize death, feelings of loss and separation are part of a developing awareness of death. Children who have been separated from their mothers and deprived of nurturing can exhibit changes such 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]
In this age range, 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 they often ask questions about the activities of the deceased person (e.g., how is the deceased eating, going to the toilet, breathing, or playing?). Young children can acknowledge physical death but consider it a temporary or gradual event, reversible and not final (like leaving and returning, or a game of peek-a-boo). A child’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 cause a loved one to become ill or that a loved one’s death occurred because of the child’s personal thought or wish. In response to death, children younger than 5 years will often exhibit disturbances in eating, sleeping, and bladder or bowel control.[3,6]
It is not unusual for children in this age range 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 in this age range begin to compromise, recognizing that death is final and real but mostly happens to older people (not to themselves). Grieving children can:
Conversely, children in this age range 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 because the surviving parent is frequently 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 old, death is understood as inevitable and is no longer viewed as a punishment. By the time the child is 12 years old, death is viewed as final and universal.[3,6]
| Age (y) | Understanding of Death | Expressions of Grief |
|---|---|---|
| 0–2 | Is not yet able to understand death. | Quietness, crankiness, decreased activity, poor sleep, and weight loss. |
| Separation from mother causes changes. | ||
| 2–6 | Death is like sleeping. | Asks many questions (How does she go to the bathroom? How does he eat?). |
| Problems in eating, sleeping, and bladder and bowel control. | ||
| Fear of abandonment. | ||
| Tantrums. | ||
| Dead person continues to live and function in some ways. | Magical thinking (Did I think something or do something that caused the death? Like when I said I hate you and I wish you would die?). | |
| Death is temporary, not final. | ||
| Dead person can come back to life. | ||
| 6–9 | Death is thought of as a person or spirit (skeleton, ghost, or bogeyman). | Curious about death. |
| Asks specific questions. | ||
| May have exaggerated fears about school. | ||
| Death is final and frightening. | May have aggressive behaviors (especially boys). | |
| Some concerns about imaginary illnesses. | ||
| Death happens to others; it will not happen to ME. | May feel abandoned. | |
| ≥9 | Everyone will die. | Heightened emotions, guilt, anger, shame. |
| Increased anxiety over own death. | ||
| Mood swings. | ||
| Death is final and cannot be changed. | Fear of rejection; not wanting to be different from peers. | |
| Even I will die. | Changes in eating habits. | |
| Sleeping problems. | ||
| Regressive behaviors (loss of interest in outside activities). | ||
| Impulsive behaviors. | ||
| Feels guilty about being alive (especially related to death of a sibling or peer). |
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 three prominent themes in the grief expressions of bereaved children:
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 is not unusual for one to say (or think), “I wish you were dead.” If that sibling were 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 because 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?
Because children depend on 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 now that the 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 death is discussed with a child, explanations 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). A child’s questions should be answered, and the child’s processing of the information should be confirmed.
Although initiating this conversation with children is difficult, any discussion about death must include proper words (e.g., cancer, died, or death). Euphemisms (e.g., “he passed away,” “he is sleeping,” or “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 of and participation in 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 aspects of the funeral or memorial service with which they feel comfortable. If the child wants to attend the funeral (or wake or memorial service), 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 and people crying), and what will happen. Surviving parents may be too involved in their own grief to give their children the attention they need. Therefore, it is often helpful to identify a familiar adult friend or family member who will be assigned to care for a grieving child during a funeral.[8]
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.[1,2] Attitudes, beliefs, and practices regarding death and grief are characterized and described according to the multicultural context, myth, mysteries, and mores that describe cross-cultural relationships.[2]
In a Japanese study, the concept of unfinished business with a family member resulted in higher depression and grief scores compared with those who felt there was no unfinished business with the patient at the time of his or her death.[3] Unfinished business can include insufficient discussions about death and end-of-life wishes because of discomfort with discussing such topics with the family member.[4]
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).[5,6]
An analysis of the results of several focus groups, each consisting of individuals from a specific culture, revealed 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 that may be played by cultural mourning practices 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.[7] 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 five questions particularly important to ask those who are coping with the emotional aftermath of the death of a loved one:
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 identify and develop ways to treat patients of other cultures who are demonstrating atypical grief.[9] Given ethnodemographic trends, health care professionals need to address these cultural differences to best serve these populations.[2]
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Added text about a study that reported that parents who felt prepared for their child’s end of life had improved social functioning in the first 2 years of their bereavement (cited Snaman et al. as reference 18).
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This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about how individuals cope with grief, bereavement, and mourning. It is intended as a resource to inform and assist clinicians in the care of their patients. It does not provide formal guidelines or recommendations for making health care decisions.
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PDQ® Supportive and Palliative Care Editorial Board. PDQ Grief, Bereavement, and Coping With Loss. Bethesda, MD: National Cancer Institute. Updated <MM/DD/YYYY>. Available at: https://www.cancer.gov/about-cancer/advanced-cancer/caregivers/planning/bereavement-hp-pdq. Accessed <MM/DD/YYYY>. [PMID: 26389487]
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