Bereavement Care
Justin Banerdt
Paul R. Duberstein
Holly G. Prigerson
BEREAVEMENT
Bereavement refers to the situation of being deprived of someone or something, typically referring to the loss through death of an individual to whom one is attached. Grief refers to the emotional and psychological response to that loss and has been characterized as a yearning for what one cannot have (1). Bereavement and grief are universal experiences that almost all individuals must confront at some point in their lifetime. Approximately, 2.4 million US citizens die annually each leaving behind many to grieve their loss (2). Approximately, 9.7% of women and 2.5% of men in the United States are widows and widowers, respectively (3). Most of those experiencing widowhood are older than 64, when their health is likely to be already compromised, and bereavement may compound their health difficulties. Although it is often considered in the post-loss context, grief can also be anticipatory as loved ones confront the loss of health and normal functioning in the patient, the looming threat of an impending death, and the changes in social roles, responsibilities, and relationships that follow (4).
Bereavement is considered one of life’s most stressful experiences (5,6). Hospitalizations are more common following bereavement and mortality risk is increased (7,8,9,10,11). Associated with an increased risk of cardiac events, hypertension, cancer, and suicidal ideation (12,13,14,15,16,17), bereavement also compromises quality of life and can lead to disability, functional impairments (social, family, and occupational), and health-damaging behaviors. Bereavement is a well-established risk factor for elevated depressive symptomatology and an increased likelihood of major depressive episodes (18,19,20,21,22) and anxietyrelated symptoms and disorders (23,24,25). Bereaved individuals who experience an abnormally lengthy and extreme response to their loss maybe suffering from “prolonged grief disorder” (PGD), the phenomenology of which differs from other mood or anxiety disorders. The severe psychological, functional, and emotional impairment associated with PGD places these individuals at substantial risk for morbidity (7,8,9,10,11,12,13,14,15,16,17).
Given the health risks associated with bereavement, it would be useful to develop preventive interventions. In many circumstances, this is not feasible. Deaths due to cardiac events or violence occur with little or no forewarning. In contrast, palliative and cancer care providers are well positioned to minimize the potential negative health consequences of bereavement as many deaths in these treatment settings follow a relatively predictable course. In particular, health-care providers working in these settings are uniquely placed during the dying process to facilitate preparedness and a degree of acceptance among the patient’s family of the approaching loss, which helps alleviate future distress and suffering (4,26,27). Additionally, bereavement care could be the final phase of any comprehensive palliative care plan. One must look at the family as the unit of care when providing palliative services and hence bereavement care becomes an essential aspect to complete and facilitate the family’s healing process.
NORMAL GRIEF: ANTICIPATORY AND POST-LOSS
Normal grief reactions are those that, though painful, move the survivor toward an acceptance of the loss and an ability to carry on with his or her life. Approximately, 80% to 90% of bereaved individuals experience normal grief (28), but personal, familial, and cultural factors may influence its progression and manifestation (29). It is important to recognize that most people adjust to the loss over time in a fairly satisfactory way.
Anticipatory grief encompasses grief-like symptoms experienced by patients and families leading up to the time of death (30). For many individuals, anticipatory grief is a natural response to a terminal prognosis and the prospect of inevitable loss (4). Families may react negatively in scenarios of anticipatory grief as escalating levels of hostility, anger, and poor communication lead to or exacerbate relationship dysfunction and conflict. Such families are at risk for psychosocial morbidity and may benefit from intervention. Supportive families, however, are notable for their cohesion and effective communication as they respond to their grief (31). Predictors of anticipatory grief include female gender, adult children, high-perceived stress, and difficulty coping (32,33). Anticipatory grief in surviving spouses and adult children has been documented as more intense than post-loss grief and predicts adjustment to the patient’s death (34,35). We recognize that many clinicians may feel uneasy about assessing risk for poor bereavement outcomes. To facilitate these assessments, clinicians may wish to administer the PG-12, a scale we have developed to assess symptoms of pre-loss grief, both to start a conversation about bereavement and to identify people at risk, using the well-established cut-scores (35).
There has been much debate about whether grief follows a direct stage-by-stage pathway from denial to anger, separation distress, depression, and finally recovery (36). Results of a recent empirical test of the stage theory of grief (36) provide mixed support for the theory. The data reveal a gradual reduction in distress over time from loss. Contrary to the stage
theory of the course of grief, disbelief was not found to be the most frequently endorsed initial reaction to loss. The predominant symptom throughout the first 6 months post-loss was yearning. Depressed mood did not peak after disbelief, yearning, and anger had subsided; rather, disbelief, yearning, and depressed mood all declined significantly from 2 to 20 months post-loss. Levels of anger remained stably low and did not peak after disbelief had faded (36). Additionally, acceptance of death increased significantly over time and revealed a pattern inverse to disbelief and yearning (36). The data suggest a parallel shift downward in all the grief indicators over time from loss (36).
theory of the course of grief, disbelief was not found to be the most frequently endorsed initial reaction to loss. The predominant symptom throughout the first 6 months post-loss was yearning. Depressed mood did not peak after disbelief, yearning, and anger had subsided; rather, disbelief, yearning, and depressed mood all declined significantly from 2 to 20 months post-loss. Levels of anger remained stably low and did not peak after disbelief had faded (36). Additionally, acceptance of death increased significantly over time and revealed a pattern inverse to disbelief and yearning (36). The data suggest a parallel shift downward in all the grief indicators over time from loss (36).
When these five grief indicators (so-called stages or what we prefer to call “states”) are all placed on the same scale (i.e., response format), they can be compared directly. This analysis revealed that the five indicators of grief peak in the exact sequence proposed by Kiibler-Ross. The likelihood that this would happen by chance was miniscule (P < 0.008). Therefore, there does appear to be some empirical support for the notion that a first reaction involves disbelief, followed by yearning, anger, depression, and ultimately acceptance. In these ways, our results offer evidence that supports and also refutes the stage theory of grief.
How to make sense of it all? It appears that some generalizations can be made. First, the initial response is one that involves disbelief. Second, acceptance, recovery, or some form of adaptation to the new “normal” gradually increases over time. Third, depressive symptoms, anger, and yearning serve to bridge the initial shock and ultimate acceptance. Fourth, as yearning, anger, and depression decrease, acceptance increases. The human psyche appears preprogrammed to disbelieve when confronted with significant life changes; adjustment and reorganization is a gradual process that occurs over time. Not all people will adjust adaptively (e.g., those with PGD), but the vast majority will.
TABLE 55.1 Criteria for prolonged grief disorder | ||||||||||||||||
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Although uncomplicated grief can be an extremely painful and sad experience, by 6 months following a death in later life from natural causes, bereaved individuals develop some sense of acceptance and may rediscover or find meaning or purpose in their lives with renewed zeal. They see the future holding potential enjoyment for them and are capable of engaging in productive activities and functioning without substantial impairment (28). They are also able to maintain connections with others and their sense of competence and self-esteem are not markedly changed by their loss. Survivors may initially exhibit many symptoms of PGD, but by 6 months post-loss there is usually improvement in their ability to focus on other things and move beyond the loss. Those who have elevated levels of a specific set of symptoms (Table 55.1) (36) after more than 6 months after the death may require clinical intervention.
PGD: DIAGNOSTIC CRITERIA, COURSE, AND OUTCOMES
Following a death from natural causes, approximately 10% to 20% of bereaved survivors find themselves unable to recover and suffer from a debilitating grief response (9,37,38). A recent study found that the sudden death of a parent results in about a 10% rate of PGD in children and adolescent survivors (39). Rates following parental death from war, however, are much higher (34.6%) (40). Deaths of children reveal higher rates of PGD in parents than other kinship relationships (41). Studies are underway to compare the prevalence rates and performance of the diagnostic criteria for PGD in countries throughout the world, across various circumstances of the death (e.g., from war to tsunami and earthquakes and fires), and kinship relationships to the deceased (e.g., parents vs. offspring).
Bereaved individuals with PGD experience disruptive and distressing yearning, pining, and longing for the deceased that remain elevated for 6 months or longer after the death. They also report extreme difficulty “moving on” with their life (feeling “stuck” in their grief), as well as feelings of numbness and detachment, bitterness, and a lack of meaning in life without the deceased. They have trouble accepting the death and see no potential for future happiness. Bereaved individuals experiencing PGD report having these symptoms several times a day and find these symptoms impair their ability to function normally (9,14,30,42,43,44,45,46,47,48,49,50,51,52). Table 55.1 presents recently validated criteria for diagnosing PGD in bereaved individuals (36).
It is important to note that this conceptualization of PGD specifies that these particular distress symptoms are elevated for at least 6 months. Hence, delayed and chronic subtypes of grief may both come under the PGD diagnosis as long as, whatever the delay in onset, symptoms are severe at 6 months post-loss. Typically, however, the overwhelming feelings of those who are diagnosed with PGD are not delayed; it is much more often the case that their grief has been intense and unrelenting since the death (28,38).
Recent research demonstrates that bereaved individuals with high levels of PGD symptoms have substantially greater dysfunction than those with lower levels of these symptoms. PGD symptoms may endure for several years and predict substantial morbidity and adverse health behaviors beyond depressive symptoms (7,8,9,10,11,12,13,14,15,16,17,38). PGD has been shown to be a substantial risk for suicidal thoughts and behaviors, with incidence of cardiac events, high blood pressure, and even cancer, in studies that took into account the effect of major depression and generalized anxiety disorder (7,8,9,10,11,12,28). It is a risk factor for quality of life impairments such as poor social interactions and role functioning, loss of energy, and self perception of illness, disability and functional impairments, loss of work days, and adverse health behaviors such as changes in patterns of consumption of alcohol, food, and tobacco (7,8,9,10,11,12,28). It has also been shown that PGD increases the risk for ulcerative colitis (11). Table 55.2 provides a summary of the several negative health consequences associated with PGD.
TABLE 55.2 Outcomes of prolonged grief disorder | ||||||||
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Research has shown that PGD at 6 months predicts impairment and complications at 13 to 23 months post-loss (8,9,10,12,38). Hence, health-care professionals can identify survivors who may experience further adjustment difficulties in the future by recognizing the signs and symptoms of PGD (Table 55.1) at 6 months. Since palliative care and oncology providers who were present during the loss may no longer be in regular contact with survivors at 6 months post-loss, it is particularly important that primary care providers are aware of the PGD diagnostic criteria outlined in Table 55.1 (36). Primary care physicians are well positioned to monitor bereaved patients and connect them with appropriate interventions if a PGD diagnosis is made.
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