Unit 11 -- Anticipated Losses and Anticipatory Grief

Grief in a Family Context --HPER F460/F560

Goals for this Unit

Controversy and confusion exist around the concept of anticipatory grief. This unit is intended to address the nature of anticipated loss, positive and negative effects of this anticipation, and ways of anticipating and dealing with this anticipation.

Preliminaries

Prior to reading this unit, I would like you to go back to your thoughts on Unit 1 and consider what you now think the functions of grief to be. These are important thoughts to keep in mind when considering anticipatory grief.

It is also useful to note, when reading the article by Rolland, that he has conceptualized grief in the narrow sense of viewing it as "individual emotions in the terminal phase." His definition of anticipatory loss more closely reflects the view of scholars like Rando who take a broader, more process oriented view of anticipatory grief.

I would like you to think of your own definition of anticipatory grief. How do you view it? Is it healthy? Unhealthy? Could it be both?

Readings

Corse, S. J. (2004). Cradled all the while: The unexpected gifts of a mother's death.Augsburg Fortress: Minneapolis, MN.

Anthology

Rolland, J. S. (1990). Anticipatory loss: A family systems developmental framework, Family Process, 29, 229-244.

Rolland, J. S. (2004). Helping families with anticipatory loss and terminal illness. In F. Wash & M. McGoldrick (Eds.), Living beyond loss: Death in the family (2nd ed.) (pp. 214-236), New York: Norton.

Web Resources

Terminal Illness: Interacting with a terminally ill loved one at www.mayoclinic.com/health/grief/CA00041

"Lecture"

Anticipatory grief is unique in that the person who is dying is still alive. That person and others in her/his life may have the ability to interact with and influence each other. Their response to the anticipated death, which may or may not include anticipatory grief, may have both positive and negative effects on the other and their relationship.

Problems with Understanding Anticipatory Grief

Research on anticipatory grief has been contradictory and problematic. Some studies have found that the ability to anticipate a loss results in an easier grief experience. Others have found no relationship between a period of anticipation and the severity of post-death grief. A few studies have found a mid-range "window of opportunity" for better post-death grief outcomes. It may be that other factors contribute to the differences (e.g., the comparison of sudden deaths and anticipated deaths without control for the relationship between the bereaved may result in a comparison of the grief resulting from the sudden, accidental death of a young person to the death of a elderly person that results from congestive heart failure).

Summarizing the understanding of the time of the concept, Knott and Wild (1986, pg. 57) identified these four themes in research on anticipatory grief:

Anticipatory grief does not appear to have a beneficial effect on bereavement outcomes in many cases.
The varying temporal, social, psychic, and physical faces of the dying experience significantly determine these outcomes.
Grieving a lost child may present particularly challenging demands on the anticipatory mourning and reinvestment experiences of the bereaved.
Reinvestment is an important, even revitalizing component of adapting to death loss, but one that is not fully appreciated nor easily come by in our culture today.

It is likely that at least some of the contradictions in the research on anticipatory grief are the result of inconsistent definitions of anticipatory grief, contrary (and possibly flawed) assumptions underlying the studies, and weak methods. It is questionable, for example, that a study that defines grief as a set of emotions should be compared to a study that views it as a process of meaning construction.

How to Define Anticipatory Grief?

Before defining what anticipatory grief is (as I see it here), I would like to address what it is not. It is not a device for completing the tasks of grief prior to the death of the individual (i.e., anticipatory grief does not substitute, or necessarily lessen, the post-death grief process). It is not just post-death grief pushed ahead in time. Although persons who are able to engage in anticipatory grief may have a less intense post-death grief experience than those who experience unanticipated grief. Therese Rando has proposed that the primary difference is that in unanticipated grief, the capacity to cope is diminished by the suddenness of the loss. With anticipated loss, the expected death will make more sense because it can be experienced as a part of a predictable process. It is not that a set quantity of grief is spread out over a longer period of time. It is that the intensity of the impact of the loss overwhelms one's coping resources as well as one's view of the world.

Just because someone has had forewarning of loss, it does not mean that he or she will engage in anticipatory grief. It is inappropriate, as is sometimes done, to assume that by having the opportunity, all persons will engage in anticipatory grieving. I see the logic used here as similar to the logic behind the statement "time heals all wounds." Anticipatory grief is an active psychological process, and simply having a period of time preceding a death is not the same thing as an active processing of thoughts and emotions related to the loss. Yet, this erroneous assumption is held in research that equates time since diagnosis with time spent in anticipatory grief.

There are also scholars who argue that anticipatory grief can not really occur, since it is the task of significant others to support and continue to love the person who is dying. In this view, any anticipatory grief that takes place will inevitably involve withdrawal from and possible abandonment of the dying person. Aside from the value judgement that goes with this view, an apparent underlying assumption of this view is that the central goal of grief is to "decathect" (i.e., separate) from the loved one. It also appears to assume that only one loss occurs with a death. This view, one we have discussed at length, is a very narrow view of grief, in general, and anticipatory grief, specifically. With anticipatory grief, the "object" being abandoned would be the dying individual. For anyone who has worked with terminally ill individuals and their loved ones, or has gone through the process him or herself, it is apparent that many losses take place, from the point at which they become aware that the death will occur. So, although it is true that this abandonment does occur in some cases, it is also possible to grieve and give up the hope for a long-term shared future without abandoning the present relationship with the dying individual.

What is Anticipatory Grief?

Anticipatory grief is the form of grief that occurs when there is an opportunity to anticipate the death of a loved one (or oneself). It is different from unanticipated grief in the amount of time to "look forward" to death and in its form. It may be affected by such things as the duration and pattern of the illness, by concurrent stresses (financial, social, physical, emotional, developmental, etc.), periods of uncertainty and (sometimes dreaded) certainty, interactions with sometimes incomprehensible medical personnel, varying support from others.

The approach I take here to anticipatory grief is consistent with that of Therese Rando (1986), who views anticipatory grief as having temporality and multidimensionality.

Temporality of Anticipatory Grief

As Rando notes, "The phenomenon of anticipatory grief is not composed exclusively of grief over losses that are being anticipated but in fact encompasses grief for losses that have already befallen or are currently being experienced" (p. 13). Although we experience a single death, we experience multiple losses (e.g., loss of hope, a future together, levels of functioning, security and invulnerability). With an extended period of time to anticipate a loss, we can reflect on and work through some of these losses while also establishing a pattern for responding to losses related to this individual. Losses of things past, losses in the present and losses that will occur in the future are all elements of anticipatory grief. In a way, anticipatory grief involves a series of grieving episodes in which the significance of an anticipated loss is considered and reconsidered.

Multidimensionality of Anticipatory Grief

According to Fulton and Gottesman (1980), it is necessary to consider three levels of analysis when looking at grief, regardless of the form of grief. These have implications for the multidimensionality of anticipatory grief:

The psychological level -- What are the coping abilities, beliefs, feelings, psychological characteristics of the bereaved?
The interpersonal level -- What is the type of relationship being grieved, the style of responding to the situation, the type of support they receive?
The sociocultural level -- What are the norms, roles, and rituals available to the bereaved?

Therese Rando (1986), in a detailed explication of anticipatory grief, detailed the many aspects of anticipatory grief, and the factors that influence the anticipatory grief of individuals. What follows here is an outline of her work; it is quite extensive and may seem overwhelming, but provides a clear idea of the complexity of the type of grief that is most likely to be "uncomplicated."

Anticipatory grief is experienced from two distinct perspectives:
- the perspective of the dying individual.
- the perspective of all others who care about her/him (friends, family, and other concerned parties).
Anticipatory grief has three time foci:
- past -- the past that was had/shared and can never be regained.
- present -- the losses that occur and are experienced as a diminution or outright end of capabilities, the ongoing experiences of erosion.
- future -- the losses of the anticipated death and such related losses as loneliness and events that will not be shared.
Three classes of variables influence anticipatory grief:
- psychological --
  - characteristics related to the nature and meaning of the person and relationship to be lost:
    - unique nature and meaning of the specific loss to be experienced.
    - the qualities of the relationship to be lost.
    - the roles that the dying person has occupied in the family or social system of the griever.
    - the characteristics of the dying person.
    - the griever's perception of the dying person's fulfillment in life.
    - the number, type, and quality of secondary losses that result from the terminal illness and that will be caused after the death.
  - the personal characteristics of the griever:
    - the griever's coping behavior, personality, and mental health.
    - the griever's level of maturity and intelligence.
    - the griever's social, cultural, ethnic, and religious-philosophical background.
    - the griever's gender-role conditioning.
    - the griever's age and developmental stage.
    - the presence of concurrent stresses or crises in the griever's life.
    - the griever's lifestyle.
    - the griever's sense of fulfillment in life.
  - characteristics that pertain to the illness and type of death with which the griever must contend:
    - the griever's specific fears about illness, dying, and death.
    - the griever's previous experience with and personal expectations about illness, dying, and death.
    - the griever's knowledge about the illness.
    - the personal meaning of the specific illness to the griever.
    - the type, frequency, and intensity of the griever's involvement in the dying person's care and treatment.
    - the griever's perception of the preventability of the illness.
    - the length of the illness.
    - the nature of the illness (death trajectory, problems of the particular illness, treatment regimen and side effects, amount of pain, degree of deterioration, rate of progression, number and rate of secondary losses).
    - the quality of the dying person's life after the diagnosis.
    - the location of the dying individual (home, hospital, nursing home, relative's house).
    - the griever's evaluation of the care, treatment, and resources that the dying individual is provided and to which he or she has access.
- Social Factors --
  - characteristics of the dying individual's knowledge and response to the illness and ultimate death:
    - the dying individual's subjective experience of the illness (course of illness, treatment regimen and side effects, amount of pain, degree of deterioration, rate of progression, number and rate of secondary losses, proximity to death).
    - the dying individual's attitude toward and response to the illness and its ramifications (physically, emotionally, cognitively, philosophically, behaviorally, socially, spiritually).
    - the personal meaning of the specific illness and its location to the dying individual.
    - the dying individual's feelings, fears, and expectations about the illness, dying, and death.
    - the degree of the dying individual's knowledge of the illness and its ramifications.
    - the dying individual's comfort in expressing thoughts, feelings, and needs and the style and extent of that communication.
    - the dying individual's feelings of being supported, understood, and helped by others.
    - the dying individual's satisfaction with treatment.
    - the degree of the dying individual's acceptance of or resignation to impending death.
    - the dying individual's will to live.
  - characteristics of the family and its members' responses to the illness and impending death:
    - the family constellation (makeup of family, developmental stage, familial subsystems, specific roles of family members and appropriateness of roles).
    - the specific characteristics of the family system (degree of flexibility, communication style, roles, norms, expectations, values, beliefs, types and quality of interrelationships, socialization patterns, family strengths and vulnerabilities, family resources, established patterns of transaction and interaction, habitual methods of problem resolution, anticipated immediate and long-range needs of the family, quality of communication with caregivers).
    - current family awareness of and understanding about the illness and its implications.
    - family members' specific feelings, thoughts, and fears about the dying individuals's particular illness, dying, and death.
    - the number and type of roles the dying individual filled in the family and the degree of role reorganization required to ensure the roles are fulfilled.
    - the role changes and psychosocial transition that are undergone by the griever as a result of family reorganization in the face of the dying individual's illness and impending death.
    - the degree of strain that the illness and the family member's responses to it puts on the family system.
    - the family's participation in the patient's care.
    - the extent and quality of the family communication about the illness.
    - the relationship of each family member with the dying individual since the diagnosis.
    - the presence of family rules, norms, values, styles, and past experiences that might inhibit grief or interfere with a therapeutic relationship with the dying individual.
    - the total impact on the family system of the sum (although the whole is more than the sum of its parts) of each family member's unique constellation of individual anticipatory grief-influenced variables.
  - general socioeconomic and environmental factors:
    - the type of relationships and communication with caregivers.
    - quality and quantity of the griever's social support system (degree of acceptance, support, security, and assistance of its members, quality of communication with its members, and degree of access the griever has to it during the illness).
    - the griever's sociocultural, ethnic, and religious-philosophical background.
    - the griever's and patient's financial resources and their expected stability.
    - the educational, economic, and occupational status of the griever.
    - the degree of access to quality medical treatment and caregiving intervention for the dying individual and griever.
    - family and community rituals for illness, dying, and death.
- Physiological factors --
  - the griever's physical health.
  - the amount of the griever's energy depletion.
  - the amount of rest, sleep, and exercise available to and engaged in by the griever.
  - the griever's use of drugs, alcohol, cigarettes, food, and caffeine.
  - the griever's nutrition.

Families and Anticipatory Grief

The Family Systems-Illness Model (presented in Rolland's article) adds new complexity to the view of anticipatory grief. In this article, you undoubtedly will recognize ideas from previous units. In particular, ambiguity within the family is seen in the discussion of the relationship between psychological and physical loss (and the varied degree and focus of anticipatory grief that takes place in the family). It also triggers questions about the point at which chronic grief (or is it periodic grief?) ceases to be what it began as and becomes anticipatory grief.

Families carry with them, their past loss experiences and the experiences of present and past family members. These losses becomes a part of the family history and influence expectations and coping approaches carried out in the family. The life-cycle timing of the anticipated loss will have an impact on its significance for the family. A particularly significant aspect of this life-cycle timing is related to childhood versus adult-onset illness. The off-cycle nature of the potential loss of a child, the sense of powerlessness that confronts parents and other adults, the fear among other children in the family, the level of guilt and blame, all contribute to a uniquely intense anticipatory grief experience with the illness of a child.

In his discussion of family's response to terminal illness, Doka (1993) has proposed the following tasks be completed for successful reconciliation of the grief and recovery of family functioning:

The reality of the loss (for each member) must be accepted.
The emotions of grief must be faced. This often is the most difficult aspect of the loss, particularly if expression of strong emotions is not encouraged within the family.
Life without the person must be adapted to. Initially, this involves adapting to the loss of the ill person as he/she is as well as to the idea of life without the person.
Appropriate ways to remember the person must be discovered.
The faith and philosophical systems that have been challenged by the loss must be rebuilt.
A new family identity must be redeveloped and the life within the family must be reconstructed.

A similar set of tasks to be completed by the family (and worked on during the anticipation of the loss) were developed by Rosen (1990). He argues that the family must find ways to achieve these tasks together, in order to promote healing among family members and within the system. Such tasks should be viewed as bridges between the world they knew before the loss and a world in which they can function and function well after the loss. Open communication among family members, often most difficult to accomplish at this time, is essential for the reconstitution of the family. Rituals are very useful tools for initiating and encouraging the continued striving toward these goals.

Costs of Anticipatory Grief

The most common concern about anticipatory grief is that it can result in premature detachment from the dying person. This may cause tremendous difficulty for the person who is dying, who may feel abandoned. The anticipatory grief of the dying person may be particularly difficult for his/her loved ones to deal with.

The stress of caring for a dying individual, plus the anticipatory grief itself can result in emotional numbness at the time of the death and may also cause the grieving individual to question her/his love for the deceased, because of an apparent lack of feelings. Because the bereaved may have worked through intense emotions before the death, they may exhibit a reduced level of public display of mourning at the time of death. As a result, mourners may be seen by others as callous or uncaring and this may result in a reduction in the support they receive. This has been referred to as "social grief," in which a person, still alive, is treated as if he or she is already dead.

The family, itself, may be adversely affected if the anticipatory grief of individuals pulls members away from one another or causes conflict over the "right way" to respond to the anticipated loss. If members are not able to resolve their differences, the result may be irreconcilable differences that are carried into other aspects of family relationships. In the most extreme case, the continued existence of the family itself may be put at risk.

General Conclusions

Anticipatory grief has been viewed in a number of ways, with the result being confusion in the research done on the topic. For a clear understanding of the concept, researchers must, at minimum, clearly identify their underlying assumptions and provide their definition of anticipatory grief. In addition, in reports where studies are reviewed, care must be taken in comparisons.

Anticipatory grief is more than post-death grief stretched out. It is a journey toward the ultimate loss through a death, but is composed of many losses, of the past, present and the future.

A multiplicity of factors contribute to anticipatory grief and understanding these factors allows one to recognize the complex nature of anticipatory grief.

The situation is even more complex when the process of coping with anticipated loss in the family is considered. Family members may be at any number of points in their grieving of the loss. There may, in fact, be family members who have not begun to grieve while others have moved to separate themselves, emotionally, from the person who is dying.

Questions for Discussion

Post your response to the following questions on the Class Discussion.

Rando suggests that "anticipatory grief" is a misnomer, because it suggests that one is grieving for a loss that will occur in the future, rather than the losses that are taking place in the present and loses from the past. What is your response to this? What term would you substitute?
Looking at the Roland articles, consider the impact within the family of the varied degree and focus of anticipatory grief within a family. In particular, what are your thoughts on the point at which what we label as chronic grief becomes anticipatory grief? How might this be played out in the family arena?
Anticipating the death of someone you love can be overwhelming, but can also provide opportunities for growth. What have you learned from the account presented by Sara Corse, in Cradled all the While?

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