While in most cases of AIDS bereavement, individuals are able to manage the emotional and physical impact of grief with the support of their friends, family, and community, clinicians may be called upon to assist people at every level of bereavement distress. Following a careful assessment of the type and level of bereavement distress, clinicians can construct a treatment plan that may include a combination of individual, small group, and community-wide activities. (See Table 3: Level of Bereavement Distress and Potential Interventions for an outline of the Integrative Model.)
|Table 3. Level of Bereavement Distress and Potential Interventions|
|Level of Distress||Bereavement Interventions|
Uncomplicated Mourning without Risk Factors
|AIDS Bereavement Education and Support|
Uncomplicated Mourning with Risk Factors
|AIDS Bereavement Education and Support||Bereavement Risk Reduction Counseling|
Complicated Mourning without Clinical Disorder
|AIDS Bereavement Education and Support||Bereavement Risk Reduction Counseling||Grief-Related Psychotherapy|
|Four: Complicated Mourning with Clinical Disorder||AIDS Bereavement Education and Support||Bereavement Risk Reduction Counseling||Grief-Related Psychotherapy||Psychiatric Evaluation and Treatment|
Effective bereavement interventions range from educational activities to psychotherapy. This chapter describes these activities and a method for matching activities and mourners. Finally, it proposes a psychotherapeutic approach -- Integrative AIDS Bereavement Therapy -- that combines aspects of psychodynamic and cognitive behavioral therapy and is enhanced by recent developments specifically designed to assist AIDS mourners in reducing their risk for complicated grief.
Communities vary in terms of the services available for AIDS mourners. To some degree, the extent of services is consistent with the magnitude of the problem. That is, those communities hardest hit by the epidemic, especially those with large populations of middle-class gay men, have established the most extensive support systems. The first step for clinicians is to determine the types of services available in their communities. Once this resource map is constructed, clinicians can match mourners to appropriate bereavement interventions based on the individualized assessment described in Chapter Two. While a discussion of community-wide health planning is outside the scope of this monograph, it is important to note that the array of AIDS bereavement interventions described here can be useful in designing a community-wide response to this problem.
In the early stages of grief, people often say that they are unprepared for the intensity of their feelings and the level of disruption these feelings cause, and they are relieved to hear that such experiences are normal. Throughout the course of AIDS grief, mourners are assisted by knowledge and encouragement regarding what to expect of the grief process. Bereavement education is helpful to mourners at all levels of bereavement distress and may be delivered in a variety of venues and through a variety of sources such as physicians or other medical personnel, mental health providers, clergy or spiritual leaders, or friends and family members.
Broad-based AIDS education may help to mediate the stigma associated with HIV disease and may provide an opportunity for healing on the largest scale. Sympathetic films and television programs have helped to change general attitudes toward people with HIV and may assist distressed mourners who may be reluctant to reach out for help. Community-wide rituals such as memorial services and candlelight parades may alleviate the sense that those who have died have been devalued and forgotten. Participating in ceremonies such as the unfolding of the AIDS Memorial Quilt may provide an opportunity to mourn with others. Elizabeth Taylor's description of her reaction to the Quilt offers a good example of the power of community-wide rituals.
The Quilt gives us our most direct feelings back; our feelings of belonging, our sense of precariousness of life, why it is worth clinging to, how it can be lived, how tragically it can be lost, how beautifully, after all, it can be relinquished, and how vibrantly it can be remembered.87
Cleve Jones, in describing his decision to create the Quilt, states:
We wanted to illustrate the enormity of the AIDS crisis by revealing something of the lives behind the statistics, to provide evidence of the calamity that we saw unfolding. We wanted to reach out to all the different kinds of people whose lives had been invaded by AIDS so that they could be strengthened in their personal struggles. And we wanted to give the world a powerful symbol of compassion and unity, an example of how we expected people everywhere to respond to this terrible challenge.88
Whether through media, community-wide rituals and celebrations, or stated public policies, communities can make a positive difference in the lives of AIDS mourners by establishing a context of tolerance and compassion for all people affected by HIV disease. Community-wide messages that emphasize the universality of pain and suffering associated with all chronic and life-threatening illnesses help destigmatize HIV disease. At the same time messages that identify the unique challenges of HIV validate the belief that AIDS requires specific efforts tailored to address these challenges.
HIV disease poses a dilemma for many religious leaders. While some liberal clergy have been on the forefront of preaching tolerance and love for people with HIV and those who love them, others have used AIDS as a rallying cry for more intolerant religious perspectives. The pain of isolation from one's religious community is poignantly demonstrated by the following excerpts from a letter to the AIDS Quilt newsletter On Display.89
My name is Rosetta DuBois-Gadson. I am an ordained minister of the African Methodist Episcopal Church. I am also a mother who has lost a child to AIDS. On May 30, 1994, my son Craig was rushed to Beth Israel Hospital in New York City. When I spoke to him that night on the phone he told me not to worry, that it was just a parasite -- cryptosporidium -- that he had probably gotten when he was on his last trip to Mexico. . . . It wasn't until July 5th that Craig took my hand and told me that he had something he wanted to tell me himself because we had never kept anything from each other. . . . He told me he was positive. He discovered it in 1990 when he applied for insurance, but he told no one. I grieved then and I grieve now for the isolation my son endured. I needed to know why, WHY couldn't he tell me? So I asked and he answered, "I knew that you, my mother, my best friend, Rosetta, would be there for me, but I didn't know if Reverend Rosetta DuBois-Gadson would be. . . ."Craig died two-and-a-half years later.
AIDS was, and still continues to be, so abhorrent to many church leaders and members that they turn their backs on it. And I just learned that my own son feared that this part of me would do the same! There came a revelation that I can only describe as divine. I was filled with righteous indignation and I could feel the strength building in me. My rage had to be transformed into action. All fear had to leave me because I was being launched into a new ministry that I never would have imagined.
Rosetta DuBois-Gadson has kept her promise to work actively as a pastor and AIDS educator and is committed to do so until, in her words, "The African American community can show the world that we are not afraid to speak, not afraid to love all our children." While inspirational religious leaders like Rosetta DuBois-Gadson are few, a great deal can be done to relieve the suffering of AIDS mourners by clergy less dedicated to AIDS work. Perhaps the most importantly step is for religious workers to bring this issue out in the open and to speak positively about those who suffer from the epidemic.
In advising physicians about grief and mourning, Stephen Shuchter and Sidney Zisook warn against counseling patients to "get past their loss" or to "put it behind them."91 Physicians need to be sensitive to the fact that important connections do not end when a loved one dies. Shuchter and Zisook point out that the death of a loved one is forever, and elements of a survivor's grief will also last forever. Rather than persuading mourners to complete their grieving, Shuchter and Zisook advise medical providers to give mourners permission to maintain some form of ongoing relationship with the deceased. This may include allowing themselves to have conversations with the deceased.
Medical providers may explain that it is common for mourners to identify with the deceased in such a way that they incorporate certain aspects or behaviors of their loved ones. Rather than hurry mourning along, Shuchter and Zisook suggest that, "It is helpful for patients to know that you care, to listen when they feel like talking, to offer the perspective of someone who identifies with the painful and often protracted course of grief, and to be ready to step in when, and if, a major depression or other medical or psychiatric complications develop." This sensitivity may be particularly helpful to persons who mourn an AIDS death and who may be experiencing or expecting rejection from others, especially those they perceive to be in authority.
Finally, given the chronic nature of HIV disease, physicians often develop ongoing relationships not only with the seropositive individual, but also with his or her loved ones. Many people with HIV disease are involved in nontraditional relationships -- most notably with gay partners and alternative family members -- and for such individuals, the mourning process may be complicated by the lack of validation for the relationships they grieve. A respectful attitude by the physician to these nontraditional caregivers may serve to reinforce and validate the relationships, making the subsequent mourning process a bit easier.
Decisions related to the nature and composition of AIDS bereavement support groups are dictated by a variety of factors including community resources, prevalence of HIV disease within a community, and specific objectives of the group. One question is determining the degree of heterogeneity of mourners to include in the group. AIDS crosses many lines of culture, class, and sexual orientation. While advantages of universality can be engendered in heterogeneous groups, mourning may not be the time to experiment with the tolerance of diversity. Another question is whether the group should be self-help or professionally led. Finally, the duration of the group is important to consider when selecting a support group. Most mourners find that after a brief time, usually eight to twelve weeks, they are ready to cope with their losses supported by people already in their lives. On the other hand, some mourners find themselves without adequate support and may opt for an ongoing group format.
The procedures and tone of self-help groups tend to be less formal than those of professionally led groups. Members are encouraged to have contact with each other outside of group meetings, and often meetings are held in members' homes rather than in institutional settings. Community organizations typically sponsor these self-help efforts, providing training to leaders or training materials to help guide the groups.
The self-help nature of the group tends to reinforce a nonpathological view of grieving. Given the level of stigmatization associated with HIV disease, having others whose experiences are similar helps to normalize and universalize mourners' grief reactions. Often a strong group cohesion forms and members thrive on a sense of belonging and unconditional acceptance. In some cases this cohesion is fostered by perceptions of "outsider status," with an undercurrent of separation from "those who don't understand us" and a bonding together against a hostile world.
While self-help groups are generally useful, there are some risks associated with this format. Appropriate matching of an individual to the group is extremely important. Care is required in determining whether the philosophy and group process is suitable for the individual. Some groups emphasize expression of intense emotions and may coerce individuals to be more emotionally disclosive than they are comfortable being. Other groups are guided by specific political or philosophical principles and may not be open to individual variation. The absence of professional leadership may also be problematic when individuals with disruptive personalities enter a group and act inappropriately. Therefore, it is important to understand the nature of each group and determine its appropriateness for an individual before recommending it to a client.
Sandra Jacoby Klein's book, Heavenly Hurts: Surviving AIDS Related Deaths and Losses, demonstrates the power of AIDS bereavement support groups led by competent mental health professionals.93 While at times, leaders take an active facilitation role in their groups, at other times, as demonstrated in the following description, the mere presence of a watchful trained leader allows a level of disclosure that might otherwise be too intense for participants: this presence ensures participants that things will not get out of hand. By setting ground rules of acceptable behavior, the leader, in Klein's words, "creates an environment of safety and acceptance."
One mourner in a mixed group was a mother whose son had died of AIDS-related illness. She came to the group in deep grief and with great anger. The anger was frequently directed at the gay men in the group. For two sessions they just listened to her and didn't even discuss their grief. By the third session, Henry couldn't take it anymore. He exploded at her, yelling, "My grief is as great for my lover as yours is for your son. We all have a lot of grief and we are all angry too. So, its about time you listened to us!" The two of them went at each other yelling and crying. Everyone else was stunned by the outburst. As the session neared its end the two of them stared at each other in stony silence.
We thought we'd never see either of them again but they both came to the next session. She started talking about how she never understood her son and wished he wasn't gay so he'd still be alive. Henry started talking about how his mother never understood him either. At times during the next several sessions they began dialoging with each other, hugging each other, and having coffee after the group meetings. They subsequently supported each other as adoptive mother and son for a long period. Having a safe environment to explore their relationship with their son and lover, as well as with each other, allowed them to come to a mutual understanding that was supportive to both of them. The other group members were also able to work out issues with their own parents by observing and sharing in the conversations. This particular mixed group was quite successful. We decided that the most important element to a successful group was the level of comfort we as therapists have with our decisions. We create an environment of safety and acceptance, and then participants will feel welcome.
While proficiency in managing intense emotional expression is one advantage of having a professional leader, knowing how to fold bereavement educational material into the group is also important. The combination of bereavement education and support can be accomplished through structured lectures or by highlighting educational points during the group discussion. A hypothetical interaction between Maria, a Latina woman grieving for three months the loss of her husband, and Sarah Thomas, a social worker, demonstrates the integration of bereavement education into a support group.
Maria: Yesterday, I finally opened Ricardo's closet. I've dreaded doing that for these past three months. I was so afraid that I would be confronted with the smell of him on his clothes.
Sarah: What happened, how did you feel?
Maria: Yes, his smell was still there. A lot less than when I put his things away right after he died, but it was still there. I fell to the floor, a mess; it brought it all back to me so strongly, like it happened yesterday. I don't know when I will ever be able to remove his clothes, and I can't imagine ever being in love again.
Sarah: At times it feels like this pain will never go away. You miss him so much. Remember when we talked about the processes and tasks of grief? It seems to me that yesterday you began to experiment with the third task: adjusting your life to Ricardo not being there. This takes time. And I know there is a part of you that doesn't want to give up your beloved. It seems to me that you are trying to figure out in your own way how to keep Ricardo's memory alive, while moving on with your own life. Would anyone else like to say anything to Maria?
While empirically validated bereavement prediction models do not exist and common sense and clinical judgment are still paramount, the risk factors delineated in Chapter Two serve as a guide for identifying mourners at risk. As mentioned previously, clinicians need to remember that single factors typically do not predict specific negative bereavement outcomes. Concern should be heightened by both the magnitude of each risk factor and the overall number of risk factors.
Once a clinician identifies a mourner as being at risk for bereavement distress, he or she should teach specific coping-oriented strategies to mitigate or eliminate the relevant risk factor. While risk reduction counseling is basically a preventive method, in combination with other forms of grief-related psychotherapy, it may aid mourners with complicated grief by reducing the risk for further complications.
A range of individual and small group counseling strategies can assist mourners in addressing specific risk factors. Research on the effectiveness of small groups in preventing bereavement complications has shown that interventions are most successful when they target mourners who demonstrate specific risk factors or high levels of distress. Other research stresses the importance of the timing of the intervention: intervening too soon, that is, within the first couple of weeks after loss, may have no positive effects or, as illustrated in one study, may even delay or interfere with the bereavement process.82 Risk reduction strategies are problem-specific and time-limited. This type of counseling should be conducted by professional counselors or skilled volunteers trained specifically in bereavement risk reduction strategies.
The bereavement burdens listed in Chapter Two represent at least two types of burdens: status burdens and situational burdens. Status burdens, such as being HIV seropositive, having experienced multiple losses, or having been a caregiver, primary partner, parent, or spouse of a deceased person, cannot be changed by an intervention. However, status burdens may influence the type of interventions appropriate for a mourner. For example, specialized groups may be formed for seropositive mourners, parents, or spouses. Situational burdens, such as financial difficulties or interpersonal conflicts, may respond to more active interventions, for example, improving coping skills, such as problem-solving, decision making, or communication.
The bereavement burdens placed on a mourner as a result of his or her being seropositive may vary to a large degree depending upon the stage of HIV disease progression, the quality of social support, and financial resources. In some cases, social service planning prior to the death is required to augment financial and housing resources that may be reduced by the death of a roommate or life partner. Clinicians must avoid making assumptions related to needs of seropositive mourners. In response to the success of new medical regimens, many seropositive individuals are more optimistic about the future, and inferences about the inevitability of a seropositive mourner's decline may be clumsy. On the other hand, some seropositive individuals may find it difficult to initiate discussion of their own health concerns in the wake of a close friend's or partner's death. In general, it is wise to begin with a discussion of grief-related issues and then gently inquire as to an individual's view of his or her own health status. For example, a clinician may ask, "Has [the deceased's] death brought up thoughts and feelings about your own health status?"
Another common bereavement burden that may require risk reduction counseling is multiple loss or "bereavement overload."8 Many mourners come to counseling feeling overwhelmed by the number of losses they have experienced and may need assistance organizing their bereavement to focus on the most important losses. Others may need to separate losses in order to fully grieve each. Counselors should listen for hidden or unacknowledged losses, such as the sense of diminished freedoms or the loss of enjoyable sexual activities. Sometimes the fatigue of grief, in part due to the extended nature of the epidemic, wears individuals down and the suggestion of taking a "bereavement holiday" to focus on other matters for a period of time is welcomed by them.
Individuals come to the tasks of grieving with different levels of personal coping competency and personal problems. Research on predicting success in bereavement consistently suggests that an individual's pre-existing ability to cope with stress is the best predictor of bereavement outcome. The UCSF Coping Project found that in a sample of seropositive gay men who provided care to partners with HIV disease, those men who were able to maintain a fighting spirit, to cognitively reframe stress in terms of personal growth, to sustain adequate social support, and to plan a course of action were less depressed and had higher self-esteem.27 Other research suggests the harmful effects of interpersonal conflict, ruminative thinking, excessive self-focus, and pessimism.76 Counseling strategies to improve the outlook of mourners and their abilities to cope are crucial.
In Coping Effectiveness Training, group participants are taught a strategy for choosing among coping approaches to maximize effectiveness in managing bereavement burdens and reducing bereavement distress. In line with the Coping Project's definition of stress, project clinicians focus on two processes they feel mediate stress: appraisal and coping. In an approach developed by the project, clinicians teach participants to fit the coping strategy to the characteristics of the stressful situation. In other words, if a mourner has a solvable problem, such as financial difficulties or interpersonal conflict, clinicians encourage "problem-oriented coping" strategies. On the other hand, for clients responding emotionally to situations outside of their control, clinicians teach "emotion-focused coping," for example, relaxation techniques or positive distraction.94
The Coping Project protocol consists of a training phase and a maintenance phase. The training phase includes ten weekly two-hour sessions, with a day-long retreat between the fourth and fifth sessions. After the training phase, participants meet as a group every two months for the remainder of one year in order to maintain the training's effects. The training covers the following elements: appraisal of stressful situations; cognitive-behavioral approaches to problem-oriented and emotion-focused coping; appraisal-coping fit; the use of social support; and self-efficacy and maintenance training. The skills that comprise emotion-focused coping include cognitive restructuring, relaxation, and humor. The strategies that comprise problem-focused coping include problem-solving, social and communication skills, decision-making, and negotiation.
An interesting confluence exists between Coping Effectiveness Training and group strategies that use the 12-step model. Coping Effectiveness Training teaches participants to make appraisals based on the changeability of stressful situations. It encourages the use of problem-focused coping in situations in which the individual has a reasonable chance to effect change. On the other hand, it applies adaptive emotion-focused coping primarily with respect to unchangeable aspects of situations. This same idea is reflective in the 12-step program through the serenity prayer: "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."96
Kathleen Sikkema and her colleagues at the Center for AIDS Intervention Research developed a variation of Coping Effectiveness Training that more explicitly combines supportive interventions with cognitive-behavioral approaches. For example, in the first session each participant presents his or her personal story or situation. These personal introductions include a description of the participant's relationship to the person(s) lost to AIDS, current difficulties and needs, and desired changes in coping with grief. Based on these disclosures, the facilitator highlights the uniqueness and universality of AIDS-related bereavement and identifies the group's goals and purposes.95 The facilitator further encourages participants to express their emotions related to loss and to learn ways to find expression for these emotions -- such as talking with a friend or hitting a cooking pan -- outside of the group setting. In the goal-setting phase of the group, with the help of the facilitator, members establish for themselves appropriate levels for their participation in community activities.
As discussed earlier, complicated is defined in this monograph by the following experience: a disruption in the course of grief characterized by an atypical intensity (overly numbed or overly intrusive) or duration (absent or chronic) of grief symptoms (shock, yearning, searching, disorganization, despair) that leads to an unacceptable duration of functional impairment in critical areas of work and relations. Further, while there is considerable overlap between the symptoms of complicated grief and psychiatric disorders -- such as depression, post-traumatic stress disorder, and other anxiety disorders -- clinicians are encouraged to make a differential diagnosis between these two types of conditions. This differential diagnosis allows clinicians to consider and prescribe appropriate psychotropic medications.
In selecting the appropriate type of bereavement psychotherapy, several factors need to be considered, including the level of psychological functioning of the mourner prior to bereavement and whether therapy is initiated early or later in the mourning process. Research conducted by Mary Vachon suggests that shortly after a death, mourners require therapeutic strategies that help them deal with inner distress and find meaning in the loss; later in the course of grief, mourners need to learn new roles and socialization. Research also suggests that supportive therapy is more likely to benefit clients with poorer functioning or lower motivation, while exploratory forms of therapy, including psychodynamic interpretations, are more likely to benefit highly motivated and psychologically minded clients.97
One useful problem-oriented strategy is the therapeutic use of rituals. A grief ritual is a formal activity that provides a structure -- a time and a place to honor an important loss. Therese Rando cites the benefits of using ritual to enhance grief psychotherapy with mourners who experience either psychic numbing or who are overwhelmed by grief.98 Counselors can assist mourners to develop their own rituals or encourage the application of rituals prescribed by religious or cultural traditions. Bereavement rituals can also be included in group or individual counseling formats. When used in groups, rituals with universal themes are more appropriate. For example, many groups use rituals to elicit memories at the beginning of the session and to encourage redirection of focus away from grief at the end of the session.
Rituals may be particularly useful for clients blocked in their awareness and expression of grief since rituals may create a safe context in which to prompt memories and their associated emotions. For clients having difficulty modulating the strong intrusions of memories or images, rituals may help to limit these unwanted intrusions by providing a specific time and place for experiencing such painful mental phenomena. Through rituals, some depressed clients may combat the sense of helplessness that may accompany mourning, and angry clients may find a legitimate forum in which to express their feelings. Counselors can assist ruminative clients devise rituals that alter self-focus and encourage outward directed activities such as viewing art or observing nature. These strategies not only provide respite from anguish, but also teach clients that they can have control over the focus of their attention.
Rituals may be conducted once to emphasize a particular moment in time or they may be used on an ongoing basis. Regular rituals, such as a daily time for reflection, may enhance a mourner's understanding of the meaning and nature of loss, and this may help resolve his or her grief. Rituals with specific therapeutic targets may be used by counselors and therapists to assist clients reach therapeutic goals.
The primary goal of psychodynamic grief therapy is symptom reduction. This is accomplished through the mitigation of an individual's need for psychological defenses against awareness of ideas and images that lead to stress and intolerable emotional states. Therapy accomplishes this goal by helping mourners consciously connect their thoughts and memories of the stressful event with their associated emotional responses. For clients who tend to "overcontrol" their awareness of their inner life, and who thus experience emotional numbing, the therapeutic task is to encourage a re-experiencing of grief; for those who experience intrusive-repetitive thoughts or affects, the task is to promote avoidance or the working through of these painful phenomena. One technique Horowitz describes as a way to give clients a sense of mastery over emotions is called "dosing," a process that entails re- experiencing an event and its meanings for a specific time, putting it out of mind for a period, and again recalling the event.
According to Horowitz, complicated grief is the result of maladaptive habitual controls over ideas and feelings related to the self and others. The assumption is that complicated grief -- in his terms, "blocked," "inhibited," or "chronic" -- reflects the presence of unintegrated, unconscious or partially conscious, and contradictory views of the deceased or earlier relationships. One of the tasks of therapy, therefore, is to identify the emotions and evaluations associated with the deceased, and this will assist the mourner to come to terms with unresolved feelings. This type of exploratory work may also uncover other unresolved losses in the client's past that may need attention. Through this process of discovery, clients begin to better understand their schemata -- their habitual views of themselves and others.
Horowitz developed a phase model of grief that is consistent with other stress response syndromes. His model includes the following phases: outcry, denial, intrusions, working-through, and completion. Each phase is assumed to reflect the activation of schemata and working models that organize the individual's dominant states of mind during mourning. Horowitz's model provides a method for analysis of the discrepancies between new schemata that may arise as the result of a recent loss and more enduring schemata. For example, the death of a husband may require a woman to revamp a major relationship schema: that of "wife." At first overwhelmed by all that this entails, she cries out in anguish. This stimulates her psychological defenses -- psychologically pushing this conflict out of awareness -- which leaves her feeling "gray" and "numb." As her defenses weaken, intrusive images or memories related to this loss of self-concept break through into her consciousness and bring to the surface painful emotions, such as fear, sadness, or anger. Provided she has the requisite ego strength to juggle the need to both tolerate these painful memories and to appropriately distract herself from them, she will be able to work through her grief and reorganize her relationship schemata. Her new view of herself is that of "widow," with all the meanings that go along with that identity.
The death of a loved one may also activate early schemata of the self as helpless, weak, childlike, inadequate, incapable, destructive, or evil. These "latent self-images" are assumed to form early in life as a consequence of some form of trauma.99 As the individual matures, he or she learns more adaptive and compensatory concepts of self and other, and these dominate the personality. In addition, the supportive context of the relationship with the deceased may also have checked these latent negative self-images.100 This aspect of Horowitz's model is particularly helpful in understanding the return of internalized homophobic thoughts and feelings by gay men who may have lived for years holding more positive views of themselves and other homosexuals. Working through these latent self images, may, in fact, have long ranging benefits to these gay men, who are further freed from the danger of their re-emergence in the future.
For all the phases of grief except completion -- outcry, denial, intrusion, and working through -- Horowitz identified normal and pathological responses, which typically comprised an intensification of the normal variant.41 For example, during the outcry phase, the normal response is an outcry of emotion, while the pathological response may be panic. For the denial phase, the normal response is the avoidance of reminders and social withdrawal, while the pathological response may be substance abuse. For the intrusive phase, the normal response is recollecting negative experiences with the deceased, while the pathological response may be a flooding with negative images.
Therapists intervene at the points in these phases where mourning appears to be suspended. For example, if an individual is in a denial phase, the goal would be to facilitate greater emotional expression. If the individual is in an intrusive phase, the goal is to help the client modulate his or her emotions and to encourage an exploration of their meaning. Interventions of this type should free the individual to move toward fuller completion of the mourning.100
Although it is important to encourage mourners to experience grief, some people may become emotionally overwhelmed and may need assistance to tolerate intense grief. Whenever possible, clinicians should apply nonpharmacological interventions such as general relaxation exercises to reduce stress or behavioral approaches to reduce insomnia. When these approaches are not sufficient, judicious use of anti-anxiety agents and sleeping medications may be indicated.101
The use of psychotropic medications in the clinical management of bereavement is an area of great debate. Given the historic misuse of medication to "calm" mourners -- especially women -- there is general suspicion about this approach among bereavement experts.37 According to Sidney Zisook, "Although some might argue that the use of psychotropic medications during bereavement is maladaptive in that these substances prevent the bereaved from 'getting in touch with their true feelings' and thereby block the resolution of grief, this position has not been validated by empirical data."102
Rando contends that failure to recognize and respect the reality that some mourners require psychotropic medication is as detrimental as forcing medication without just cause. She suggests that a treatment plan should include a careful medical examination as well as appropriate psychological and pharmacologic management. If clinicians suspect that medication is suppressing or interfering with grief, they should reconsider this approach, keeping in mind at all points that medication is an adjunct to psychological treatment and social support, not a replacement for them.37
According to Stephen Shuchter, it is important to conceptualize correctly the purposes of psychopharmacologic interventions with the bereaved.103 He suggests, "Broadly speaking there are two kinds of circumstances for which these agents should be considered: treating co-morbid psychiatric conditions and modifying affects that are unique to the grief experience. With regard to the former, it becomes important to make diagnoses such as major depression, panic disorders, [and] obsessive-compulsive disorders . . . because if untreated, they will have untoward effects upon grief: they are likely to distort or exaggerate that process." In this context, grief needs to be treated as any other stress-precipitated disorder.
Shuchter further points out that pharmacological intervention for affective states that are transient to grief is much more controversial, has been little studied, and tends to reflect the philosophies of individual providers. In general, whenever behavioral mechanisms can be used to modify the level of anguish, they are desirable. The goal of desensitizing a client to images, affects, and other triggers of complicated grief reactions is critical. However, those clients who feel "tortured" by grief may require brief periods of medication. Furthermore, given the biological importance of sleep, it is appropriate to medicate sleep disturbances, even in the absence of other evidence of a "disorder."103
To achieve these goals and guide therapy, the integrated approach applies four tasks: establishing rapport and validating loss; developing an integrative and dynamic understanding; working through psychodynamic blocks and facilitating cognitive and behavioral change; and reinforcing positive changes and terminating the therapy. While these tasks imply a general sequence of treatment and help clinicians set a reasonable clinical course, they cannot be applied rigidly. As therapy progresses, it may require a temporary or permanent refocus on different tasks.
Assess for Complicated Grief. The clinician and the client review the client's progress through the course (phases and tasks) of grief, the intensity and duration of grief symptoms, the nature of grief symptoms, and the level of functional disruption. Taking into account the client's individual and cultural values, the clinician and client then determine whether the client is suffering complicated grief. If so, clinician and client explore the possibility of conscious or unconscious conflicts and mechanisms that may be blocking the mourning process.
Assess for Clinical Disorder. Using standard diagnostic procedures,36 the clinician and client review mental and physical symptoms and previous psychiatric history to uncover co-existing clinical disorders and to evaluate the need for psychopharmacological intervention.
Assess Bereavement Risk Factors. The clinician assesses bereavement burden and personal impediments to coping to determine whether specific cognitive or behavioral changes are required to improve coping. If so, the client and clinician collaborate to prioritize goals and develop programs to reduce bereavement burden and increase coping skills.
As demonstrated earlier in this chapter, bereavement education can assist clients both to structure their expectations and goals, and to reinforce their progress toward resolving grief. Other therapeutic activities to support this task of working through blocks and facilitating change may include helping clients to restructure their self-concepts and self-esteem, identify and express emotions, communicate more effectively, address specific problems, and make new life decisions. The clinician serves as a guide for structuring the sessions, and as an empathic and inquiring listener, a confronter of inconsistencies, an encourager and motivator, an interpreter of underlying psychodynamics, and an expert in behavioral change. He or she may use activities such as therapeutic rituals to provide a structure for change. Working together, the client and clinician determine how to allocate their time -- both during the session and over the course of the therapy.
Adjunct community resources may enhance and augment therapy. These resources may include community-wide AIDS ceremonies and rituals, AIDS bereavement support groups, AIDS bereavement risk reduction classes, and a variety of resources that assist clients improve social support, meet new people, and find meaning in their lives.
Successful mourning is dependent on a range of individual factors, and its achievement may require the mourner to return to therapy for further assistance and reinforcement after the termination of initial therapy. Given the continuity of goals and dynamics within these therapeutic episodes, each episode may be considered a phase in an ongoing therapeutic process, and phases may be separated by varying periods of time. Bereaved clients may return to therapy some time after termination, for example, as they move into a new phase of grief or on the occasion of an anniversary, which may bring back a confusing intensification of grief. The return may last only a few sessions, reinforcing previously achieved progress, or it may extend, depending on the complexity of the issues raised.
On the other hand, integrated AIDS bereavement therapy may require a significant change in focus after the initial grief work has been finished. As seen in the following case example, after uncovering longer-standing personality issues, therapy may require a change in direction, the restatement of goals, and the application of different therapeutic strategies.
Paul described a highly conflicted relationship with his family and the family business, which was now run by his older brother. He had served many functions in the business, including a disastrous stint as a store manager shortly after he graduated high school, which required him to return to the home office for additional training. He then took over the store that he had managed when he met David. After the death of his father, Paul left the business altogether to become a "house husband," but returned when David went on disability: "We began to get on each others nerves -- always being together." At the time he entered therapy, Paul was working in a low-level position in the warehouse, as he put it, "It keeps me busy, but doesn't tax me too much."
In the first session, Paul recounted the story of David's death. "After three years with AIDS, David had taken a turn for the worse. The doctor diagnosed Mycobacterium avium complex, treated it, and assured us that David would recover. On the day before David's death, I had had a rough time tending to him and I decided to sleep on the couch. David protested a bit, but I insisted that I needed the rest. The next day, I found David on the floor next to our bed -- his body contorted and dead." Since that morning, this image of David had haunted Paul.
Paul had served as David's primary caregiver throughout his illness. Over the three or four months before his death, David's need for care had become intense, requiring Paul to orchestrate many visits to doctors' offices, take on most of the household chores, and attend to David's emotional and nursing needs. Paul was an enthusiastic caregiver and jealously protected his time with David -- at times refusing help from family and friends. David returned from a short stay in the hospital several days before his death, a return that was both joyful and burdensome for Paul. It was the fatigue from this homecoming that motivated Paul to sleep alone on the night of David's death.
During the first few days after David's death, Paul carried out the many activities of notifying friends and family, and making arrangements for David's cremation. Paul's mood vacillated between a strange calm and gnawing anxiety. As he put it, "Things didn't seem real; I felt like I was walking in a dream." Along with the shock of finding David's body, Paul felt exhaustion from the overwhelming demands of David's illness and death. Paul had difficulty falling asleep and staying asleep and took sleeping medication prescribed by his physician every night during his first three weeks of mourning. When he was able to sleep, he dreamed the recurring nightmare of finding David's body.
Weeks after the death, Paul began to register its reality and to feel both pangs of intense pining and a great restlessness. When he experienced the image of the death scene, Paul tried desperately to push it away and the guilt and remorse he associated with it. At times, he felt David's presence in the room and was startled to hear himself call out to David. Paul's nights were filled with vivid dreams of David -- alive and dead -- and Paul often woke in a panic, fearing that he had forgotten to do something for David. Paul described becoming enraged by small inconveniences, such as waiting in line or driving, experiences that were followed by deep sobbing. He noticed himself searching through the crowds, not exactly sure what he was looking for, until he realized he was longing to see David just one more time.
As a co-owner in the family business, Paul was able to take off as much time as he needed to deal with his grief. When he returned to work after three weeks, he arranged his schedule to allow himself to work odd hours, usually alone. While he had the energy to work each day, he had little left for anything else, and he felt estranged from family and friends. Paul was often annoyed with his family -- feeling sometimes that their concern for him was intrusive and at other times that they were not distressed enough over David's death. At first Paul tried to visit old haunts, but usually he left abruptly when his sense of loss became too intense. Finally, he began to avoid places that reminded him of David, spending most of his free time "staring at the boob tube."
Three months after David's death, at the time of his first session with Dr. Garrison, Paul suffered frequently from moderate to severe anxiety and pervasively from mild to moderate depression. He was still using sleep medication three or four nights a week and had nightmares almost every night. He had difficulty falling asleep and would wake early in the morning unable to return to sleep. He had migraine headaches two to three times per week. He spent a large amount of time ruminating about the last scene of David's life, asking himself repeatedly why had he slept on the couch that night. Although Paul understood that he been a devoted -- even doting -- lover, the guilt associated with this final event threatened to negate all the love that went before. Paul also remained isolated from friends and family.
Finally, consistent with other anxiety disorders, Paul demonstrated excessive physical anxiety symptoms -- shaking, sweaty hands, and muscle tension -- mental tension, and frequent ruminative thinking.
Given the magnitude of the symptoms -- which were mitigated by how recent the death was -- Dr. Garrison made a provisional diagnosis of PTSD. He planned to re-evaluate this diagnosis three months later and deferred a secondary diagnosis of major depression, other anxiety disorder, or any personality disorder. Dr. Garrison made a provisional diagnosis of complicated bereavement. He further observed that Paul was suffering from migraine headaches, and noted bereavement and conflict with his family as major stressors.
Since David's death, Paul often had imaginary conversations with him, when he wanted advice about how to manage social interactions or when he had difficulty controlling his emotions. He often remembered one of David's favorite lines when confronted by an aggressive driver, "You don't need to out-asshole the asshole." Remembering this soothed Paul and often allowed him to chuckle to himself and let go of his anger. During this time Dr. Garrison listened carefully and validated the enormity of Paul's loss. Through empathic responses to the full range of Paul's concerns, including descriptions of explicit sexual activities, Dr. Garrison gained Paul's trust and Paul began to discuss more freely his innermost thoughts and feelings, including his conflicted feelings regarding being gay.
Paul described feeling stuck. On one hand, he knew that he needed to get on with his life; on the other hand, he fought any efforts to move him past his grief. Dr. Garrison educated Paul about the course and tasks of mourning, how mourning takes time, how the time it takes is different for each individual, how feelings of longing, yearning, and searching are normal. By helping Paul understand that the first tasks of grief were to accept the reality of the loss and experience the emotions of grief, Dr. Garrison gave Paul permission to express his deep sorrow and anger.
As the therapy entered its third month, Dr. Garrison began to help Paul see that his reactions to David's death were determined both by the immediate loss of David, and to some degree, by more long-standing beliefs and feelings about himself and others. Paul responded that he knew that he had long suffered from diminished self-esteem. In fact, he had always wanted help with this matter but feared that he was not up to the challenge of "facing his demons."
Over the period of one month, Paul reported feeling more in control of his life and his emotions. His contacts with his family -- his mother, older brother and sister, and younger brother -- were more pleasant. With the encouragement of Dr. Garrison, Paul began to discuss with his family the kind of support that he wanted: that he did not want David to be forgotten. Paul reported a touching moment in which his mother asked to see some old family pictures of David with Paul's nieces and nephews. He cried with sorrow and joy when his nine-year-old niece told him how much she missed David and drew a picture of him. At the same time, Paul began to put limits on the amount of time he was willing to spend with his family. As he put it, "When David was alive I always had an out. I could just say that we had plans. That doesn't work so well without him."
Toward the middle of this phase of therapy, Paul began to discuss his early childhood. He described his family: an alcoholic father, who lived in the shadow of Paul's domineering grandfather and who left the family when Paul was in high school; a mother whose main concern was keeping up appearances; and two brothers and a sister known for their voracious competitiveness. He both took pride and felt deep sadness in recalling that all of the boys in the family -- Dad included -- were seen as eccentric, hard-drinking, and mischievous. He described his struggles during adolescence to cope with his emerging homosexuality, and his earlier beliefs that homosexuality was wrong and that all homosexuals are weak and untrustworthy. While Paul no longer believed these ideas, they returned to haunt him when he was at his weakest. Dr. Garrison reassured Paul by saying, "By bringing these previously suppressed thoughts and feelings to consciousness, you can begin to reduce their power over you."
During this time Paul's anxiety diminished considerably, however, he continued to have difficulty sleeping. Dr. Garrison educated Paul about the need for a regular sleep-wake cycle, and the two developed a sleep schedule. Paul initiated an exercise program and began listening to relaxation tapes in the evening. These activities had a moderately positive, but intermittent, effect on his sleep and anxiety.
After three months observation, Dr. Garrison identified a pattern of personality deficits, which predated bereavement and was consistent with a diagnosis of personality disorder. Paul's long-standing negative self-concepts and self-esteem appeared to be exacerbated by his grief. He exhibited a tendency toward social inhibition, feelings of inadequacy, and hypersensitivity to negative evaluation, largely stemming from his childhood. He avoided additional work responsibilities and social opportunities for fear of being criticized. While his tendency to hypersensitivity to criticism was consistent with Avoidant Personality Disorder, the magnitude of this aspect of the problem did not appear to warrant that diagnosis. Dr. Garrison diagnosed Paul with a "personality disorder, not otherwise specified."
As the weeks unfolded, Paul described more of his early life. His elementary school years were filled with fear and shame. "I was a little queer kid, terrible at sports, not good in school, and the brunt of a lot of jokes by the other kids. I decided that I would rather be known as a trouble-maker than a sissy, so I started getting into a lot of trouble." In fact, this pattern of mischief had a long tradition in Paul's family, dating to his father's rebellion against Paul's grandfather, who was the patriarch and founder of the family business. Paul spoke with a mixture of pride and embarrassment as he recounted boyhood pranks with his older brother such as sneaking off in the family car or burning down the neighbor's garage.
While Paul's mother became enraged by the boys' antics, his father would "rave a bit and then wink." On several occasions his father had to "buy off" the Catholic school he attended so it would take him back after flunking a class. Paul learned to see himself both as a "wise guy" and a "chip off the old block." More importantly, he had been left with grave doubts about his intellectual abilities and his ability to take care of himself. Beyond this, he had lived with intense shame and fear that someone would discover his sexual desires for other boys.
By the time Paul reached high school, he had a full-blown cocaine and alcohol problem. He was known as the "life of the party." While in retrospect, he understood that most of his friends either suspected or knew that he was gay, he felt that he needed to curry favor with the "cool crowd" by spending large sums of money, providing the other kids with drugs, and chauffeuring them around in his new car. In his junior year in high school, Paul became extremely depressed, partially due to his drug use and partially due to some early disappointing sexual explorations with other boys. One evening he decided to drive his car off the road. He remembered thinking, "If it killed me, so be it; if I lived, surely they would send me to get help." Fortunately, Paul was not badly hurt. Unfortunately, his parents, in the midst of a divorce, spent their efforts trying to keep the matter quiet, never sending him for the help he desperately needed and wanted, but was afraid to request.
After high school, Paul attended community college for one semester. When his grades were lackluster, his father told him that he didn't want to waste any more money on Paul's education and insisted that Paul join the family firm. Paul was both humiliated and relieved not to have to deal with school. The change also gave him plenty of "partying money." The next four or five years Paul calls the "lost years." Continuing to fulfill his family obligations -- Christmas at his mother's house, golf with his dad, Easter with the family in Hawaii -- he lived a highly "closeted life." Attracting many men who enjoyed his money and his cocaine, his belief that "gay men can not be trusted" was reinforced. All the while, he secretly harbored the hope that one day he would find a gay man who would love him for himself and would enjoy a simple domestic life. He realized that he really detested his self-destructive lifestyle: "I always wanted to do something good with my life."
When he was 29 years old and managing one of the family businesses, Paul hired David to be a salesman. Given that he was not officially "out" to his family or at work, Paul was reluctant to approach David, even though he knew that David was gay. One evening after working together late, he invited David out to dinner. That led to a hot weekend of sex and drugs. For the next few months, he tried not to respond to David's advances, but finally, Paul gave in to his desires, and the two began to spend most evenings together, usually having sex and doing drugs. Slowly, however, they began to do things other than get drunk and high. On the evening that Paul learned of the death of his father, David held and comforted him -- neither was drunk or stoned.
Over the next five years, Paul and David ended their drug and alcohol use completely. Shortly after his father's death, Paul decided to leave the family business for a period of time feeling that he no longer needed to comply with his father's wishes. He never liked the responsibility of being a boss, and secretly dreaded being criticized or being discovered as incompetent. During that time, David continued to work for the business, and Paul became a "house husband." This was the happiest time in his life. David helped Paul maintain good relations with the family while giving him an excuse not to be at their beck and call. Paul at last felt like a success: "Being a loving husband -- I finally found something that I could do well." A couple of years later, when David went out on disability, Paul felt able to return to work in the warehouse on his own terms.
As Paul recounted his relationship with David, a picture emerged of a man who had "lost his other half." Dr. Garrison helped Paul identify those psychological functions that David provided Paul and assisted him in devising ways to take responsibility for these functions himself. A dramatic example occurred about eight months into the therapy. On his way home from work one evening, and man driving a small pickup truck almost hit Paul's car. Enraged, Paul made and obscene gesture. The man rammed his car into Paul's and sped away. Paul followed in at high speed and then pulled off the freeway and called the highway patrol. Both Paul and the other driver were arrested for reckless driving. In discussing the incident, Paul lamented that had David been with him, Paul would not have lost his cool. He said, "This is an example of something I need to learn: how to calm myself down." In subsequent sessions, Paul spent a great deal of time developing an inner dialogue between his nurturing, self-disciplining aspect and his sad, scared, angry aspect.
Throughout the first year of Paul's mourning, his grief vacillated greatly. When other aspects of his life were going well, his grief seemed manageable; when he faced disappointments, he would re-experience a great longing for David. This longing became especially salient the month of the anniversary of David's death. Dr. Garrison and Paul spent a great deal of time in therapy discussing ways that Paul could "take care of himself" during this period. Paul arranged with his mother to spend time with him on the day after the anniversary. As he put it, "I want that day to be alone with David; the next day I'll spend with the family." On the anniversary day, he woke early and went to mass, lighting a candle for David. He took a walk on a deserted beach, allowing himself to cry and "rage at the sea." The following day he felt calmer than he had for a long time and more hopeful about the future.
Paul's depression and PTSD symptoms had been reduced considerably and were now mild. Although his sleep continued to be disturbed occasionally, it was greatly improved, allowing him to feel refreshed most days. The intrusive images of David's death scene were less frequent, less vivid and disturbing, and more amenable to refocusing. Paul's migraine headaches also appeared to have significantly diminished. Paul remained on his antidepressant medication and agreed to return for a medication review twice a year.
Dr. Garrison and Paul spent the last couple of months in therapy reinforcing positive cognitive and behavioral changes and reviewing situations that required Paul to soothe himself and control his emotional reactions. He felt proud of his accomplishments in "taking care of himself" and frequently chuckled as he reflected on what David might think of the advances that he had made. Paul ended therapy fourteen months after David's death. He knew that he could return to see Dr. Garrison if his depression or PTSD increased or if he needed help coping with life's burdens or the mourning process.
The overall goal of the Integrative Model is to help AIDS mourners adequately manage the mourning process and find meaningful resolution to their grief. The intention of the model is to be broad enough to manage the universal aspects of bereavement, yet specific enough to address the uniqueness of individual AIDS mourners. Placed within a social, cultural, and historical context, the Integrative Model guides efforts to provide knowledgeable and compassionate care to all those who suffer the loss of a loved one to AIDS. In so doing, it benefits the healing process for both individuals and communities.
Copyright © 2000 UCSF AIDS Health Project.
To order this book, call 415-502-7270 or visit www.ucsf-ahp.org and download an order form.