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Bereavement: Reactions, Consequences, and Care (1984)

Chapter: Bereavement Intervention Programs

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Suggested Citation:"Bereavement Intervention Programs." Institute of Medicine. 1984. Bereavement: Reactions, Consequences, and Care. Washington, DC: The National Academies Press. doi: 10.17226/8.
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Suggested Citation:"Bereavement Intervention Programs." Institute of Medicine. 1984. Bereavement: Reactions, Consequences, and Care. Washington, DC: The National Academies Press. doi: 10.17226/8.
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Suggested Citation:"Bereavement Intervention Programs." Institute of Medicine. 1984. Bereavement: Reactions, Consequences, and Care. Washington, DC: The National Academies Press. doi: 10.17226/8.
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Bereavement Intervention Programs

. 3G~ _-G - - Hospices, manymutua] support programs, and some hospitals offer support to families facing the loss of one of their members. They encourage all the members of the family, including children, to remain involved with the dying person. After the death and dunng theperiod of bereavement, new needs for support and counseling often appear

CHAPTER 10 Bereavement Intervention Program s r ~ . _ he previous chapter dealt with the roles and responsibilities of health professionals in relation to the bereaved in the broad context of health care. In this chapter, the more formal bereavement programs and approaches are discussed. Many of the techniques used by mental health professionals and experienced lay care-givers to assist the bereaved are similar to those advocated in Chap- ter 9 as appropriate for health professionals generally. All are designed to facilitate the grieving process and to have a positive effect on outcomes. There has recently been a tremendous increase in efforts to assist the bereaved in a variety of ways. Several explanations of this growth can lee postulated. First, as discussed throughout this volume, bereavement has been recognized as a powerful, sometimes pathogenic event, both psychologically and physically. This is exemplified by emotional dis- tress, physical symptoms, and loss of social functions in many people and by the excessive mortality, morbidity, and use of health services of some individuals. Second, there has been a growing recognition that the normal bereavement process may take at least a year for most people and often longer. Third, our society has undergone many changes that This chapter is based on material prepared by Marian Osterweis, Ph.D., study direc- tor, from background papers by committee members Marie Killilea and David Greer, M.D., and Phyllis Silverman, Ph.D., consultant. Committee member Gerald Klerman, M.D. prepared the section on medications. 239

240 / Bereavement: Reactions, Consequences, and Care have an impact on the circumstances of death and the course of bereave- ment. As discussed in Chapter 8, for example, geographic mobility has a profound influence on the availability of social support from kin and close friends. Growing concern about limited financial resources has sparked greater public policy interest in preventive measures. And finally, as noted in Chapter 9, some professional care-givers may be ill- equipped, both emotionally and in terms of specific skills, to deal com- fortably with the bereaved. Although most persons recover capacities that had been diminished and adapt to bereavement, the intensity, magnitude, and consequences of grief have attracted the attention of a variety of institutional and indi- vidual care-givers. Some programs are designed to facilitate the normal bereavement process while others are intended to help people who are having, or who are at high risk of having, special problems or pathologic reactions to bereavement. Some are directed to the bereaved generally; others focus on people who have particular bereavement circumstances in common. Programs may be designed to help individuals, families, or groups of similarly bereaved people. Increasingly, these programs are based in institutional settings such as hospitals, health maintenance or- ganizations, and community mental health centers. They may be im- plemented by experienced laypeople, who typically have been bereaved themselves, or by professionals from medicine, nursing, social work, psychology, or the ministry, who may or may not have special training to work with grief reactions. Many different theoretical perspectives guide the training of grief workers and provide the framework for the actual programs. But whether they are formal or informal, naturally occurring or deliberate, run by peers or by professionals, the goals of all bereavement interven- tions include the facilitation of the grieving process and, implicitly or explicitly, the prevention or alleviation of the detrimental conse- quences of bereavement. The many different approaches of current pro- grams and the overlap among the professions preclude a discrete ciassi- fication of these interventions. In this chapter, four major approaches to helping the bereaved are discussed: mutual support, hospices, psycho- therapy, and medication use. Bereaved persons may avail themselves of one or more of these interventions sequentially or simultaneously. THE MUTUAL SUPPORT APPROACH Mutual support or self-help groups are associations of people who share the same problem, predicament, or life situation and who unite for the purpose of mutual aid. This element of commonality is solely

Bereavement Intervention Programs / 241 what determines inclusion in the group.~4 All decisions about content, organization, and external relationships are made by the participants.43 Mutual support groups provide their members with: · person-to-person exchange based on identification and reciprocity · access to a body of specialized information · an opportunity to share coping techniques based on realistic expec- tations for optimal functioning · an increased sense of personal worth, by focusing on how similar members are to others confronting the same situation · reinforcement for positive change and maintenance of effort toward change through feedback on performance · an arena for advocacy and social change · an opportunity for education, not only of other persons with simi- lar problems, but also professionals and the public · an opportunity to help others by giving concrete aid and providing a role model · help for the helpers who themselves are aided by assisting others36 and by activism toward shared goals. is 50 Mutual help groups have been organized as alternative care-giving sys- tems, as adjuncts to the professional care-giving system, and as strategic independent elements in interdependent networks of formal and infor- mal care-giving systems in communities.7 if In recent years there has been an increase in the number of indepen- dent mutual support groups and of voluntary associations with support groups concerned with acute and chronic life-threatening illnesses. A few deal with a single issue, such as the "National Committee on Treat- ment of Intractable Pain," which advocates legislation to permit the use of heroin in control of terminal cancer pain. Most groups are con- cerned with specific categories of persons, such as parents of children with cystic fibrosis, families of relatives with Huntington's disease, or parents of premature infants. A few, like "Make Today Count" and "Candlelighters," are concerned with the overall needs of adults and children as they face the uncertainty associated with a variety of dis- eases, especially cancer. Such organizations offer support, education, and practical advice to their members during the course of an illness. It is unclear whether and how these groups offer systematic help with be- reavement when death actually occurs, but there is informal support given among a smaller network of individual members. Postbereavement mutual support groups fall into two categories: {~) those that help people deal with personal grief, with the problems resulting from bereavement, and with the reorganization of their lives around the new status of being a single person (e.g., "THEOS" and the

242 / Bereavement: Reactions, Consequences, and Care various widow-to-widow programs); and A) those that attempt to help survivors cope with a grief made particularly difficult by the circum- stances of the death, e.g., suicide, homicide, or the death of a child. Some groups (e.g., "Compassionate Friends" or "Seasons") focus pri- marily on support; others {e.g., "Parents of Murdered Children," "Mili- tary Widows," "Vietnam Veterans," "Mothers Against Drunk Driv- ing, " " Sudden Infant Death Syndrome" I, in addition to giving support, are committed to advocacy and social and political action to remedy the circumstances that caused the death of a family member or adversely affect the lives of survivors. The modalities of communication in both kinds of groups include one-to-one outreach, group meetings, peer counseling by telephone or by mail, and periodic conferences for mem- bers and professionals. Almost all groups have developed literature based on their own ex- periences and sometimes in collaboration with professionals to edu- cate others in similar circumstances the general rubric. and health ~ro fessionals. Many organizations have periodic newsletters with , . . information on, for example, the types of services and benefits offered members; the grief process and its impact on marriage and family, in- cluding guidance for sibling grief; suggestions for the behavior of friends, relatives, and health professionals; community resources; refer- ence lists and resource materials dealing with the latest scientific find- ings on causes and treatments; personal experiences of survivors; and public policy issues. According to Parkes,32 the assumption that underlies mutual support bereavement groups is that "the person best qualified to understand and help with the problems of a bereaved person is another bereaved per- son." The organization that best exemplifies this approach is the Widow-to-Widow program. The Widow-to-Widow Mode] The original Widow-to-Widow Program was a demonstration- research project conducted by Phyllis Silverman under the direction of Gerald Caplan at the Laboratory of Community Psychiatry at Harvard University from 1964 to 1974. Extensive library research, observation, and interviews with widowed persons and community agencies were done in order to learn about the bereavement process, existing services, and widows' perceptions of themselves. This background research re- veaTed several important findings that provided the rationale for the structure and content of the program. Existing services at that time

Bereavement Intervention Programs / 243 were generally limited to traditional counseling by mental health prac- titioners. Relatively few widows sought out these services because they did not view their upset and practical problems as "mental illness." When they did seek such help it was typically several years after the bereavement, and grief was rarely identified as the presenting problem, although delayed grief reactions might be uncovered during therapy.42 It also became apparent that the bereavement process was not over in a few weeks or months but that it extended over a period of years; that guilt and anger were not identified by widows as the critical issues need- ing attention, although these were the common therapeutic foci; and that bereavement was best thought of not as a "crisis" but as a "transi- tion." The death of a spouse initiated a critical life transition, marked by a sudden change in social status (from wife to widow J and requiring major changes in self-concept, roles, and tasks. With these observations in mind, Silverman considered how best to assist people in this transi- tion and when to intervene.43 44 Because it is not always possible to identify in advance which in~vid- ua~s are at risk and because people seemed reluctant to ask for help, it was decided that the intervention should be based on a public health approach rather than a clinical model. Thus, the program was designed for the entire popu~a~on at risk and used an outreach rather than a self- referral approach.46 The next question had to do with the timing of intervention. :[mmedi- ately following bereavement widows are likely to be numb and to act reflexively. Clergy, funeral directors, family, and friends are there to help with the specific tasks of the funeral and mourning rituals. Only somewhat later, during the phase Silverman43 calls "recoil," does the meaning of the Toss begin to become real. But by then family and friends have often gone home, expecting that the widow is over the worst and can manage on her own. This period of recoil seemed the ideal time to offer help to widows with practical problems, management of extreme and profound feel- ings, and a general reordering of their lives. Thus, it was decided: {~) that help should not be offered until at least three to six weeks after the bereavement; {2) that in order to be accepted by the entire population at risk, it should be offered by another widow in the neighborhood who could serve as a role mode! during this critical transition; and {3) that help should be offered initially on a one-to-one basis because the re- cently bereaved were not often ready for group interactions for several months. Mutual support groups were useful later. The goals of the program centered around change, not around "recov- ery." It was discovered in talking to widows that they never "recov- ered" in the sense of returning to all prebereavement baselines, but that

244 / Bereavement: Reactions, Consequences, and Care a successful outcome depended on their ability to adapt and alter their images and roles to fit their new status. Although emotional support from a person who has also been through the experience was considered important, the women's more fundamental need was to learn how to change. Thus, in addition to emotional support, the intervention pro- vided specific information about various practical concerns and about bereavement, as well as helping the widows develop alternate coping strategies.44 The original program was funded by the National Institute of Mental Health and the national and Massachusetts associations of funeral directors. It was designed by Silverman, who convened a forum in which the widow aides could pool their experiences as widows reaching out to new widows, discuss coping mechanisms, and develop strategies for program development. Silverman provided sanction, legitimization, and technical assistance when appropriate. Over time, the widow aides became very knowledgeable about such issues as insurance, finances, employment opportunities, housing, and community health and social services. As the program developed, social and educational group activi- ties were started by the widow aides. The initial program, which was conducted in a heterogeneous com- munity in Boston from 1967 to 1970, was limited to widows under age 60. In 1971, it was replicated with elderly Jewish women.47 There are now programs all over the United States, Canada, and the United King- dom. In 1973, the American Association of Retired Persons fAARPJ, in conjunction with the National Retired Teachers Association, estab- lished the Widowed Persons' Service. Using materials and consultants from the Widow-to-Widow Program, the AARP began a national effort to develop mutual help programs in communities throughout the coun- try. There are now more than 133 local AARP programs. Groups under different auspices, such as Community Contact for the Widowed of Toronto,37 are also modeled after the original Widow-to-Widow Pro- gram. It should be noted, however, that there is substantial variation in the application of the original model. Some programs offer only group sup- port while others also provide one-to-one outreach. Some groups have no professional involvement while others have a substantial amount. Professionals may act as occasional consultants, provide routine back- up support for the volunteers, train volunteers, or run support groups. It is also interesting to note that there are very few mutual support groups for widowers or other groups of bereaved men. The reasons for this are not entirely clear. On several site visits it was suggested that men do not readily avail themselves of such services, preferring to deal En, ~_ .

Bereavement Intervention Programs / 245 with their problems alone, and that men are more likely than women to be able to become distracted by their work after bereavement. Efficacy of the Mutual Support Approach Many program descriptions include impressionistic, anecdotal data about the perceived usefulness of the support given by one-to-one or group encounters with others who have been through a similar experi- ence. Such reports, although not objective, often provide important in- sights into the bereavement experience and what some people have found useful. For example, these reports almost uniformly suggest that the discomforts of bereavement extend over many years. Indeed, the re- spondents to a newspaper notice asking for widows to join a study had been widowed on the average almost five years and only one-third of those replying had been widowed less than two years.' In addition, in- formation about the bereavement process and the opportunity to inter- act with others in similar circumstances appear from these reports to help by reassuring the newly bereaved that they are not "going crazy" and by providing a forum for the bereaved to talk openly about their feel- ings with others who are not uncomfortable listening. This kind of impressionistic data, useful in some ways, also has its limits. In particular, it provides few clues about the relative benefits of different intervention strategies. Ideally, those helping the bereaved would like to know which programs work best for whom under which circumstances. The diversity of program goals, structure, content, and methods renders comparative evaluations difficult. There also appear to be some barriers to evaluation that are inherent in the programs themselves. The mutual support programs tend to be run by laypeople in community settings. They are unlikely to have peo- ple associated with them who are skilled in research, and the organizers have often been reluctant to be scrutinized by professional evaluators. For these and perhaps other reasons, such as underdeveloped research methodologies appropriate to collaborative research, there is a paucity of research on the impact of mutual support groups. The four studies that have been done are summarized in Table I. Two of these studies were large surveys of participants in mutual sup- port groups to determine whether intensity of involvement "meeting at- tendance and leadership roles) with the group was related to bereave- ment outcome. Lieberman and Borman24 surveyed current and former members of 71 different chapters of THEOS, a mutual support group for widows and widowers with chapters throughout the United States and Canada. They found that a number of outcomes {psychosocial, behav

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248 / Bereavement: Reactions, Consequences, and Care ioral, and physiologic) varied directly with intensity of involvement with the group. A similar hypothesis was tested by Videka-Sherman,s3 who surveyed members of Compassionate Friends, a mutual support group for l~e- reaved parents with chapters throughout the United States and Canada. Self-reported personal growth varied directly with involvement, as pre- clicted, but no significant differences were founc! on measures of depres- sion by level of involvement. Only one study has compared different mutual support approaches. Barretti randomly allocated widows to three different types of mutual support groups and a nonintervention control group. Each support group concentrated on a specific aspect of widowhood. The "self-help" group met for two hours each week for seven weeks and focused on specific, practical problems of widowhood; the " confidant" group focused on the development of new friendships between pairs of widows; and the " con- sciousness raising" group focused on women's roles in society. Unlike the "pure" widow-to-widow approach, in this study nonwidowed pro- fessionals Doctoral students in clinical psychology) lecT the sessions. At follow-up {seven weeks after the groups stopped meeting), the most pos- itive changes occurred in the consciousness-raising group and the fewest positive changes occurred in the self-help group. This finding lends support to Silverman's thesis44 that widowhood is best thought of as a life transition, rather than a crisis, anc! that in order to make that transition successfully widows need to overcome obstacles to changing their self-image so they can leam new roles. Since no additional follow- up was done, however, it is not known whether the group differences . . . perslstec . over time. Vachon and her colleagues3i have conducted the only rigorous study of the efficacy of Silverman's original widow-to-wiclow model. Women whose husbands had died at age 67 or younger in one of seven participat- ing hospitals in Toronto were contacted by a widow helper who offered one-to-one support, practical help, and eventually small group meetings as well. Of the 185 widows eligible for the study, 162 {~8 percent) agreed to participate and were randomly allocated to the intervention or nonin- tervention group. The program had no predetermined limits on the amount or duration of contact. Personal interviews were conducted with widows in both groups lay project staff at I, 6, 12, and 24 months after the bereavement. The Goldberg General Health Questionnaire (a well-vaTidated psychiatric screening instrument) was administered, along with another self-administered instrument designed to examine demographic and situational variables, social support, and physical symptoms. A structured interview was conducted to elicit more sensi

Bereavement Intervention Programs / 249 live data regarding the husband's death and other stressors. As summa- rized in Table I, the psychologic adaptation of the experimental group members to their new circumstances was better than the control group's at 6 months; at 12 months, interpersonal adaptation was better; and by 24 months the experimental group was better than the control group on all measures. High-risk subjects who were in the experimental group were significantly more likely to have shifted to Tow risk by 24 months than were highly distressed widows who were in the control group. The best predictor of bereavement adjustment was perceived so- cial support. Further analysesS2 revealed that deficits in social support and health and financial problems were correlated with enduring high distress at 24 months after bereavement. Personality traits compatible with success- fu] socialization in an appropriate "widow role" were found to differen- tiate the women with enduring low distress. Emotional stability and maturity {ego strength), conservatism, and superego strength jconscien- tious and moralistic) were among the traits that distinguished the low- distress group. HOSPICES The rapid proliferation of hospices in this country since ~ 975 has been driven by a powerful grass-roots movement to provide an alternative to overly aggressive hospital care on the one hand and inadequate nursing home care for the terminally ill on the other. In 1979, the General Ac- counting Office reported to Congress that there were 59 operating hos- pices and 73 others being planned. In 198 l, the American Hospital Asso- ciation estimated that there were approximately 800 hospices. he Rev 1983, this figure was revised to 1,200. The term hospice refers not to an institution but rather to a philoso- phy of care for the terminally ill and their families that emphasizes: ,,7 , , _ , · control and palliation of symptoms rather than cure of disease · care given at home or in as home-like an environment as possible · patient autonomy regarding decisions about care · attention to emotional, social, and spiritual needs as well as to re- quirements for physical care. Because the patient and his family are considered to be the unit of care, hospices aspire to provide support to families both.before and after death.29 This philosophy, which was adopted from the British, 39 40 has been translated into a variety of programs in this country. Hospice care is de- livered in both inpatient and home care settings in a number of different

250 / Bereavement: Reactions, Consequences, and Care administrative and organizational models. Some are freestanding while others are hospital-based. Many hospices offer only home care, whereas some offer only inpatient care and others offer both. Some hospices pro- vide all their own services, while others represent loose affiliations of a number of pre-existing service providers E.g., visiting nurses, home- maker services) or contract for services as needed.3i Despite the fact that patients with many different types of diseases could be appropri- ately cared for, the vast majority of patients in hospice programs have some form of cancer, and these programs have tended to favor the mid- dle class. Hospice services are provided by multidisciplinary teams usually composed of physicians, nurses, social workers, chaplains, psychia- trists, physical therapists, and volunteers. Professional bereavement counselors, especially nurses, may also be involved in bereavement care. In most hospice programs, lay volunteers, who often have themselves been bereaved, perform a substantial proportion of the bereavement work. Most hospices screen lay volunteers very carefully. Screening procedures were discussed at length at three of the committee's site vis- its. There appears to be a consensus that people whose own bereave- ment occurred less than a year ago are not ready to assist in these pro- grams and should not be permitted to work directly with other bereaved individuals. Second, people who have their own personal agendas {e.g., religious proselytizing, use of others to work through their own prob- lems, need for companionship) are considered inappropriate because of the special vulnerability of the newly bereaved. Sense of commitment, good listening and communication skills, sensitivity, compassion, sense of humor, and awareness of personal limitations were all men- tioned as desirable characteristics for lay volunteers who wish to work with the bereaved. Screening is usually done by the coordinator of vol- unteer or bereavement services in a face-to-face interview. Applicants may also be required to complete a questionnaire that asks about their bereavement history, personal history generally, current lifestyle, be- liefs, and attitudes. Once accepted as a volunteer, some training is usually provided. This may include education about the bereavement process, hospice philoso- phy, and community resources; development of communication skills; and role playing. Training may be as brief as a few hours or as long as 30 hours, done either very intensively in a couple of days or spread out. Following didactic training sessions, volunteers may be very closely su- pervised for some period of time. Regular meetings with all bereave

Bereavement Intervention Programs / 251 ment volunteers usually provide a forum for ongoing evaluation of their work. Most hospice programs assign a bereavement worker to each family when a patient begins treatment. This person assists the patient and family during the terminal illness and follows up with the family after the death. At some hospices, however, a different pattern is followed. The staff of the Boulder County Hospice, for example, believes that the best person to do follow-up bereavement care with families is someone who has not been directly involved with care of the dying patient. Sup- port for the bereaved requires very different skills than active care of dying patients. Initially, nurses served in both these roles. But it seemed that bereavement support became a low nriorit`7 with Stint rare a=_ . . .. . .. ~ _ _ , ~ ~ ~ J ~ manning tne nurses first concern. Second, it was found that following bereavement, families needed to tell their story over and over again. This need could be met more effectively by having a new person avail- able to listen rather than one who had been intimately involved around the time of death, who might have his or her own version of events. Thus Boulder County Hospice has two rather separate sets of care-giv- ers available one for patient and family care before the death, the other for follow-up family support after the death.22 Although all hospices offer some type of bereavement intervention to families, at least in preparation for the death, they vary greatly in the breadth and magnitude of services offered. During the predeath phase, the interventions are likely to be informal rather than formal, with a focus on information and education, support, and validation by the care-givers who are tending to the patient's needs and assisting the fam : 1 ~. . ,. . . ~ . . ~ fly. Dt;l-;LlUb~ Hospice care IS most often given in the patient's home by the family, support of those responsible in this endeavor may take on a significance that is absent in other care settings. The entire ethos of hos- pice care is also likely to lend sunnort through its implicit ~f,~nt~n~ m J ~ --¢ r - - ~ ~~~~ ~ ~o~~ ~ irk ~ ~~~~t At- ~ ~4 ~ .. . .... .. ~ ~ ~ death and willingness to discuss and plan for it. Hospices have certain opportunities to assist families prior to the pa- tient's death that are intrinsic to their basic functioning. These include ongoing possibilities for support and education of the family, as well as for observation of family functioning in order to plan for effective fol- Tow-up. Like hospitals, however, once the patient has died, hospices must organize their services in a different way in order to support fami- lies effectively. Although about 70 percent of hospices6 offer services for about a year following bereavement, these efforts are often modest. Such services may include home visits, phone calls, letters, social gatherings, support

252 / Bereavement: Reactions, Consequences, and Care groups, counseling {both individual and group), anniversary remem- brances, and referral to other support services. The range of services of- fered and the intensity of the follow-up vary widely among individual hospice programs. One-to-one contacts are frequently limited to a phone call, letter, or visit at three-month intervals for a year. Hospice bereavement programs have much in common with mutual support groups. In fact, most hospice programs can be characterized as mutual support offered under the umbrella of a newly institutionalized health care option. As with mutual support efforts, hospice bereave- ment programs are targeted for the vast majority of bereaved people who can be expected to work through their grief without needing profes- sional help. Like mutual support groups, hospices emphasize education and support. Because they are formal health care institutions, however, there is usually some involvement of health care professionals not necessarily mental health professionals in the bereavement programs. As described during the site visit to the Boulder County Hospice and as reflected in its written materials, grief is seen as a complex time of need rather than an illness. The goals of follow-up bereavement services are: "to provide family members with information about the normal grief process; to provide grieving family members an opportunity to review and reflect on the experience of caring for their loved one and their loss experience; to assess and monitor individual coping ability, stress lev- els, and available support; to encourage family members to utilize exist- ing support systems or to seek and create additional sources of sup- port."22 Although some hospices offer limited psychotherapeutic counseling, most do not. They typically make assessments and refer people to other community resources if they are experiencing abnormal grief reactions. The staff of the Boulder County Hospice estimates that less than 5 per- cent of bereaved individuals in their program have needed to be referred to mental health professionals. Perhaps because of the extensive family involvement required in hospices, those who are psychologically less healthy do not choose this mode of care. Although until recently there has been little third-party reimburse- ment for hospice care, in 1982, as part of the Tax Equity and Fiscal Re- sponsibility Act {P.~. 97-248, Section 122J, the Social Security Act was amended to provide federal reimbursement for hospices under Medi- care. The legislation calls for a three-year experiment, through October 1986, with requirements for quality assessment and evaluation of cost impact as the prerequisites for deciding whether to continue the hospice benefit further. Although it is too early to assess the impact of this legis- lation, certain provisions seem likely to alter what has been thought of

Bereavement Intervention Programs / 253 as hospice care, including the bereavement services involved.25 Hos- pices are required to provide bereavement services for families, yet they cannot be reimbursed for such programs. Without direct support for these services, there is growing concern that bereavement care, one of the hallmarks of hospices, may be reduced to whatever minimal level will meet formal requirements. The Impact of Hospice Bereavement Programs Hospices offer a rich opportunity for addressing a number of impor- tant questions on bereavement, including the effects of caring for a dying patient at home on the subsequent bereavement reactions of fam- ilies, the nature of anticipatory grieving and its effect on subsequent be ~ ~ ~ - v reavement, and the relative effectiveness of different approaches to be- reavement support. Hospices that are affiliated with prepaid or other closed health plans provide a unique opportunity to study family reac- tions over time. With the advent of Medicare reimbursement for hospices, a number of federal agencies and private foundations have become interested in studying the effects of this type of care. Although their principal interest seems to be on the cost of care for the terminally ill, studies of the pre- ventive implications of bereavement interventions for survivors should not be overlooked. If effective, such interventions for the bereaved could have significant long-term implications for medical care costs and productivity in the workplace that would far outstrip the cost implica- tions for medical care of the dying person in the last few months of life. Thus, hospices provide not only intrinsically interesting sites in which to examine various aspects of bereavement and approaches to interven- tions, but also an unusual opportunity to study questions of cost-effec- tiveness that have been virtually overlooked in bereavement research. Perhaps because of their grass-roots beginnings and desire to be sepa- rate from the mainstream of medical care, hospices initially were un- willing to be evaluated. Much of the early literature on hospices from England and the United States simply stated that these programs were providing good and necessary services that benefited patients and fami- lies while avoiding all the perceived evils of modern medical institu- tions. To the extent that research was being done, it focused on symp- tom control, especially on analgesics for pain management. In the last several years, the resistance to formal evaluation of hos- pices has lessened. This is due in large part to the need to demonstrate the cost-effectiveness of hospices in order to secure continuing funding. Before passage of the Medicare amendment, the Health Care Financing

254 / Bereavement: Reactions, Consequences, and Care Administration, in conjunction with the John A. Hartford and Robert Wood Johnson Foundations, sponsored a major national hospice evalua- tion. Twenty-six hospices were eligible to receive Medicare reimburse- ment for three years. These 26 waivered hospices were compared with 14 nonwaivered hospices and with conventional care. Unfortunately only a very small part of this multimillion dollar study was devoted to an examination of bereavement services and their impact on surviving families. As part of the National Hospice Study, 6 the principal care persons (PCPs) of cancer patients who died in hospital-based hospices jN = 580), home-based hospices IN = 780), and conventional care settings IN = 270) were interviewed twice prior to bereavement {at intake and three weeks later) and at three and one-half months after bereavement. The mean age of these groups was SS, approximately half were surviving spouses, and 72 percent were women. Although it had been hypothesized that there would be significantly better outcomes for the survivors of both hospice groups than for con- ventional care survivors, the data on a number of different measures generally indicate more differences between the two types of hospices than between hospices and conventional care. Before and after bereave- ment, PCPs from hospital-based hospices were significantly less dis- tressed emotionally, felt less burdened by patient care, and reported greater satisfaction with patient care then survivors in home-care hos- pices. Following bereavement, however, home-care PCPs although more distressed-scored significantly better on a scale of social reengagement than hospital-based PCPs. It is not known whether this reflects a response to the higher level of emotional distress, and hence a reaching out for more help, or whether it merely represents a return to normal social involvement that was cut back because of the time spent caring for the terminally ill patient in the home. There were no signifi- cant differences between the three groups in the number of doctor visits made in the first three months of bereavement. Although it is not clear what proportion of bereavement assistance and counseling was sought by the PCPs and what proportion was offered by the programs on an out- reach, preventive basis, hospice survivors {especially those from home- care programs) received significantly more bereavement assistance than the PCPs from conventional care settings.4i Because survivors were followed for only a few months, the Tong-term effects of the different modalities of hospice and conventional care on bereavement outcomes are not known. However, this study is impor- tant because it begins to document the impact of hospice care on survi- vors and points the way to research hypotheses deserving further study.

Bereavement Intervention Programs / 255 It is unfortunate that funds have not been made available to continue this aspect of the study, so that outcome measures could be refined and the Tong-term effects of different contexts of dying and different inter- ventions could be documented on an already identified, large sample of bereaved individuals. Parkes33 reports on the use of trained lay volunteers to provide sup- port and practical advice to ''high-risk" survivors whose relative (mostly spousesJ or close friend died at St. Christopher's Hospice in London. One hundred and eighty-one recently bereaved individuals were divided into three groups: imperative need, high-risk, and low- risk; the high-risk people were then further divided into an intervention or nonintervention group by random assignment. Data on the two high- risk groups were presented. At 20 months postbereavement the groups were compared on a number of measures, including physical symp- toms, depression, habit changes {smoking, alcohol, and drug used, an index of worry, and a general health index. As in Raphael's study,35 sig- nificant differences were found between the two high-risk groups. Those in the intervention group had become like the Tow-risk individ- uals; the differences in outcomes were even more significant for men than for women. Unlike most hospices, the Palliative Care Unit (PCUJ at the Royal Victoria Hospital in Montreal has been actively engaged in research and evaluation since its inception In 1975. This ongoing interest in research may be due to the fact that the Royal Victoria is a teaching hospital. A bereavement intervention study began when the hospice first opened.3 Twenty close adult relatives of patients who died of cancer during a six- month period in the hospice were matched with 20 relatives of patients who died in the active treatment part of the hospital. The PCU families received total hospice care including predeath support before the death and bereavement counseling. Open expression of grief and communica- tion between family members were encouraged before the death. After the death a nurse offered reassurrance and active listening for six months {in person and by telephoned. None of the hospital families re- ceived any of these services. All subjects were contacted for a telephone evaluation interview 54 weeks after the death. The questionnaire assessed current living ar- rangements and changes in lifestyle following bereavement, anniver- sary activities, grief reactions, and adjustment as measured by physical and psychological health and social behavior. The hospice group showed significantly more signs of adjustment and reorganization and the control group showed significantly more signs of grief and counter- productive coping strategies. The authors commented that hospice sub

256 / Bereavement: Reactions, Consequences, and Care jects sounded calm while control subjects appeared agitated and upset on the telephone. In 1978, a major study began at the Royal Victoria to assess the impact of hospice care generally and bereavement interventions specifically. The study, which is not yet completed, is being directed by Dr. Marga- ret Kiely, a psychologist from the University of Montreal. A site visit was made to Montreal to learn the details of this study. Subsequently, preliminary results were presented at a conference.~5 The study's ob~ec- tives were to evaluate the effectiveness of bereavement support com- pared with no support, and the effectiveness of support by trained lay volunteers as compared with nurses. Efforts were made to standardize the content of the intervention, although the intensity and duration could vary according to need. For those who received bereavement sup- port, usually one to five home visits were made during the first four months of bereavement. The study also compared results for bereaved subjects from three settings-the PCU, other parts of the Royal Victo- ria, and a hospice unit in a chronic care hospital. A detailed evaluation instrument was designed to measure physical and emotional health, social arid emotional adjustment, changes in life style and habits, and demographic data. Evaluation interviews of all subjects were conducted in person at 6, 13, and 25 months following bereavement. Preliminary analyses show different patterns of bereavement reac- tions between men and women and between French- and English-speak- ing families. Some other impressions from the data are unexpected. Ex- perimental subjects reported twice as many physical symptoms as controls. Subjects from the PCU did worse on several outcome mea- sures than people from the other settings where less attention was paid to anticipatory grieving. Data from one year after bereavement suggest that interventions were helpful, but at two years after bereavement those people who had had interventions were significantly worse off. It should be noted that it is not at all clear what has been assessed- the bereavement process, the effects of hospice care generally, the ef- fects of a bereavement intervention, or even the evaluation process, which itself became an intervention. In this study, as in others that do multiple assessments in person, evaluation interviews themselves may facilitate grieving because they provide an opportunity to interact with a compassionate person and to review feelings about the loss. Further analyses may shed some additional light on these questions but may never be able to establish completely the impact of each of these compo- nents on the course of bereavement.

Bereavement Intervention Programs / 257 PSYCHOTHERAPEUTIC INTERVENTIONS FOR THE BEREAVED For individuals who feel overwhelmed by the painful emotions attrib- utable to grieving or who are experiencing pathologic or distorted grief reactions, psychotherapeutic intervention may be warranted. As used here, psychotherapy refers to verbal techniques used by mental health professionals to assist the bereaved. Psychotherapeutic methods and ap- proaches encompass a wide range. · The service providers most commonly are psychiatrists, psychiat- ric social workers, or clinical psychologists, who may practice either independently or as part of teams in medical centers, in counseling agencies, or in programs specifically aimed at helping the bereaved. · In certain settings assistance may also be provided by psychiatric nurses and specially trained counselors, including pastoral counselors. · Individuals may refer themselves or may be referred by friends, clergy, or medical personnel. · Treatment may be brief and time-limited ranging from 6 sessions (often described as " crisis intervention" ~ to 20 or 30 sessions or it may be long-term and open-ended. · Therapy may be dynamic, behavioral, or systems-oriented and may be offered to individuals, families, or groups of similarly bereaved per- sons. As discussed in Chapter 3, a number of theories guide psychotherapy with the bereaved. The particular training and orientation of the clini- clan, as well as an assessment of the individual client's or patient's needs, usually determine the type of help that is offered. Despite the individuality of methods and approaches, mental health practitioners generally share certain characteristics: nonjudgmental support and compassion and a wish to help the bereaved person or family resume adequate functioning arid sense of well-being. Psychotherapists with a psychodynamic or psychoanalytic perspec- tive may be inclined to focus on the individual. They may help the be- reaved patient to uncover, in a safe and self-accepting way, hostile feel- ings toward the deceased that had been kept out of awareness but that had taken a toll on the individual's psychologic well-being. They may also assist the bereaved to modify extremely negative self-perceptions that go beyond the relationship with the deceased. Typically these clini- cians assume that pathologic grief reactions derive largely from preex- isting factors in the bereaved person and features of the relationship with the deceased, such as inappropriate or immature defensive and

258 / Bereavement: Reactions, Consequences, and Care coping strategies, preexisting emotional instability, a history of unre- sol~red prior Tosses, and an especially ambivalent or dependent relation- ship. The treatment goal is to clarify any neurotic conflicts that have rendered the person vulnerable to pathologic grief, and to help the per- son work through troubling emotions and trains of thought.23 39 A behaviorist may conceptualize the problem in a similar way, but focus less attention on the internal personality characteristics of the pa- tient and more attention on specific behaviors. The therapist mad trv to "desensitize'' -.- 1 . . ~_ _, , _ Ine oereavec person wno seems incapable of accepting and mourning the loss. The therapist mu held the n~.r.~On f..Onctr~'rt and ~1 ~i. ~ ¢ ~__, __ __¢ ___ _ ~ _ ~ · ~ gradually accomplish a scale of Increasingly difficult tasks {e.g., facing photographs of the deceased or visiting the gravesite) that imply an in- creased ability to relinquish the deceased. Cognitive approaches are designed to remove obstacles to normal grieving by assisting the bereaved to "re-grieve" the Toss in their own A. ~ -- Icy reliving one loss and reexperiencing feelings toward the deceased, the bereaved are helped to revise their images and tn re- structure the meaning of the Toss. There are a number of different interpersonal approaches to psycho- therapy that deal directly with a family system or that focus on the psy- chosocial context of the individual patient. For example, therapists with a family or systems approach are primarily concerned with the im- pact of the loss on the family system, that is, how the death affects roles and communication patterns among the survivors. They are likely to treat the couple {in the case of a child's death, for example) or surviving family as the "patient," helping to identify and ameliorate patterns of communication and behavior that are putting strain on individual fam- ily members. :~ ~ Hi:_ _.: _ ~ 07 PA =~ 1 ~ , ~ ~ By contrast, the newly developed Interpersonal Therapy is designed to treat individual patients who have depression associated with abnor- mal grief reactions. This "is a focused, short-term, time-limited ther- apy that emphasizes the current interpersonal relations of the depressed patient while recognizing the role of genetic, biochemical, developmen- tal, and personality factors in causation of and vulnerability to depres- sion."~8 Proponents of this therapy point out that it is similar to other therapies in terms of techniques but different in terms of specific strate- gies for accomplishing tasks. Treatment proceeds in three stages. First, the depression is explained to the patient and related to current and past interpersonal relationships, and major problem areas are identified. The goals of the second phase are to facilitate the grieving process, to assist the patient in developing relationships to substitute for what has been lost, to make the necessary role transitions, and to restore self-esteem.

Bereavement Intervention Programs / 259 Finally, the end of therapy is discussed explicitly and the patient is helped to recognize his or her independent competence. Although the training and theories that guide the work of mental health professionals may differ from those of others (nontherapists) who work with the bereaved, there is likely to be considerable overlap in practice. In both psychotherapy and the mutual support mode! de- scribed earlier, there is provision of support, an attempt to facilitate and manage grief reactions, and an effort toward improving family relation- ships. Both approaches may work with the bereaved to develop new coping skills or to modify existing ones. Differences lie in the depth and scope of intervention. Whereas nontherapists may be proficient at help- ing those who are experiencing "normal" or "normative" grief, they are usually not prepared to cope with extreme distress or those highly v ~ ~ . ~ __ _ _ ~ - - 1 J: disturbed reactions that suggest underlying mental illness. In addition, nontherapists do not use bereavement as an opportunity to do more extensive psychotherapeutic work, whereas dynamically oriented therapists, in particular, may explore basic aspects of the per- sonalitv. aiming at modification of defenses and working through of neurotic conflicts or developmental difficulties. How ambitious the goals of treatment are to be depends on the particular agreement and wishes of the therapist and patient. Three of the site visits made by the committee and staff were to psy- chotherapeutic programs for the bereaved. The diversity of their ap- proaches is illustrative of some of the professional models that have been used with the bereaved. The St. Francis Center in Washington, D.C., includes a professional counseling service as well as a lay support component. Counseling is done by clinical psychologists or psychiatric social workers on a one-to- one basis and in groups. Clients may refer themselves to this service, be referred by the volunteer service if their problems seem too extensive to be handled by laypeople, or be referred by their physicians or clergy. Some of the clients in the counseling program are basically healthy peo- ple who are experiencing normal grief reactions but who have nonsup- portive families and friends, but most have preexisting personality prob- lems that were exacerbated by the loss or are experiencing especially acute or prolonged grief. Individual counseling is usually held once or twice a week, for as lit- tle as two weeks or as Tong as two years if needed. Clients are given permission to grieve, to tell their story repeatedly if they need to, and to express their feelings. Information about the bereavement process helps the bereaved understand that often even very strong negative feelings are normal. Group therapy also is offered. Currently there are groups for

260 / Bereavement: Reactions, Consequences, and Care young widows and widowers, each with four to five people who need help in alleviating the painful and confusing responses to the Toss of a spouse. The Center for the Study of Neuroses at the Langley-Porter Institute, University of California at San Francisco, is a major psychotherapy re- search center. Two studies of bereavement responses have been con- ducted using psychodynamically oriented brief therapy ~12 sessions) for self-referred clients who are experiencing difficulty. According to staff ~ 1~ ..L~ ~ ~ or 1. ~ ~ p~Up1~; WllU c~p~rlent;e extreme alrllculty tollowmg bereavement or other trauma are those who have a "history of maladaptive attitudes and beliefs that prior to the event had lain dormant."20 Derring th~r~nv , ~ ~ ~ , . . . . . ~c patient Is confronted warn transference interpretations about anger and other emotions, and the pending termination of treatment is explic- itly raised as part of the way to work through the loss. Negative self- concepts, which may be activated by the trauma of bereavement, and the nature of the attachment to the deceased are reviewed in therapy and patients are helped to detach themselves from the deceased. The Center for Preventive Psychiatry in White Plains, N.Y., is in- tended primarily for the treatment of young children. Many bereaved children are seen each year in the Situational Crisis Service. Staff work- ers at the Center believe that bereavement places a child at increased risk for the rest of his or her life if not properly attended to. Their ap- proach is to treat both child and parentis). Parents are helped to under- stand the nature of bereavement in children, are given guidance about how to communicate with their child and about symptoms that deserve attention, axle are supported in their own grief. Children are typically in therapy twice a week for about a year following bereavement and are then seen annually thereafter for many years. This periodic mental health checkup is believed to be an important way to make certain that the child is progressing normally and to offer additional brief therapy if new problems have emerged. rim The Impact of Psychotherapy with the Bereaved Lack of comparability across the various psychotherapeutic ap- proaches and therapists, along with a shortage of appropriate and quan- tifiable measures of outcome, have stymied past efforts to evaluate psy- chotherapy in general. In addition, for a number of practical reasons the research that has been done on the efficacy of psychotherapy has fo- cused mainly on short-term treatment, and the patients have been highly selected. Most studies currently funded by the National Institute of Mental Health focus on behavior therapy, although most psychother

Bereavement intervention Programs / 261 apy provided in the United States is psychodynamically oriented; most studies are of outcomes rather than the processes and mechanisms that lead to particular outcomes; most research is conducted on patients whose diagnoses are clearly agreed upon and fit neatly into a category in the American Psychiatric Association's Diagnostic and Statistical Man- ua]; and relatively few studies have been conducted on children or ado- lescents. These limitations of psychotherapy research generally apply to bereavement intervention research as well. In fact, most psychotherapy in general as well as for bereavement in particular is provided by individual practitioners in private offices where the content of the interactions and outcomes are kept confiden- tial. Individual case studies and clinical reports attest to the efficacy of certain kinds of therapeutic interventions for people who are at high risk for or who have experienced pathologic reactions to bereavement; such reports usually describe a particular individual therapist's work, however, which may be largely idiosyncratic and, therefore, not readily generalizable. Much progress has been made recently in improving the reliability of outcome measures and in developing more standardized psychothera- pies that will lend themselves to evaluation. Increasing attention is be- ing paid to the development of short-term therapies and manuals to de- scribe and instruct therapists in their conduct. These training tools permit greater comparability in treatment across therapists, thereby fa- cilitating more replicable evaluation research. This work is well devel- oped for studies of depression, 56 but very few research studies involving quantitative methods and control groups have been conducted so far in the area of bereavement (see Table 2~. Gerber et al.s report on a controlled, prospective, longitudinal study that offered brief therapy to the aged bereaved. A group of nonpatient elderly individuals, members of a prepaid medical plan, who had lost a spouse either from cancer {40 percent of sample) or cardiovascular dis- ease [60 percent of sample) were followed for a minimum of three years; 169 individuals were randomly assigned to an intervention group {con- taining ~ ~ 6 people) or to a control group {containing 53 people) . Weekly meetings with a psychiatric social worker or psychiatric nurse were of- fered for six months to individuals or to all family members who were part of the same household. Although originally it was planned that these meetings would be in the home or office, many preferred weekly telephone contact and occasional office or home sessions. Therapy fo- cused on moral support, grief work, and environmental manipulation. A variety of measures were used to document the impact of interven- tion on the surviviors' medical, psychologic, and social adjustment ini

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266 / Bereavement: Reactions, Consequences, and Care tially and at 2, 5, 8, and 15 months following bereavement. Only the medical indicators are reported. During and shortly after the intervention, the supported people re . ~·~1 . , _ ~ ~ ~ ~ ~ _ ~ ~ _ ~ ~ ~ _ ported less drug use, less illness, and fewer visits to their doctors than the controls. By the time of the final evaluation, IS months after be- reavement, there were few significant differences in these measures and no significant differences in major illnesses. The authors report that those who benefited most from the intervention were r,~onl~ who were physically healthy at the time of bereavement. Horowitz et al.9 ~ studied the impact of brief, dynamically oriented psychotherapy on self-referred adults who had lost a parent through death. Twelve therapy sessions focused on the relationship with the de- ceased and facilitation of grief. Thirty-five patients were compared with 37 volunteer subjects who had also been parentally bereaved but who had not sought treatment. Assessments were done at 2, 7, and 13 months to examine changes within and between groups over time. A number of self-administered instruments and clinical rating scales were used to assess symptoms of psychologic distress, adjustment, function- ing, self-concept, life events, perceived social support, and sociodemo- graphic variables. Not surprisingly, initial levels of distress were significantly higher for patients than for controls. At the 13-month follow-up, patients' distress was substantially reduced on most measures. The predictive value of a number of intervening variables was examined. Contrary to the findings in many other reports, perceived social support was not related to out- comes. Death of a mother, cumulative life events, social class, and de- velopment of self-concept were related to outcomes. The outcome of brief treatment was also reported for a group of 52 bereaved patients who were treated for adjustment reactions or post- traumatic stress disorders following the death of a spouse or parent. The treatment was dynamic psychotherapy, limited to a maximum of 12 weekly sessions. Patients were assessed by independent evaluators several months after the last therapy session. While the majority of patients had major reductions in stress-specific and general symptoms, as well as improvements in personal and social functioning, a range on all these outcome measures was noted. The authors found that pre- treatment levels of impairment and distress were significantly related to outcome, but that demographic variables were not. Aspects of the therapists' techniques interacted with two "dispositional" variables- organizational level of the self-concept, and motivation for dynamic psychotherapy in predicting outcome of treatment. More exploratory techniques seemed to be more suitable for highly motivated and better

Bereavementlntervention Programs / 267

268 / Bereavement: Reactions, Consequences, and Care Mawson et al.26 report on the effectiveness of a "guided mourning" intervention to assist patients who were stuck in their grieving. Twelve patients who complained of persistent distress for at least a year follow- ing bereavement were randomly allocated to one of two treatment con- ditions. Guided mourning focused on exposure to avoided and painful memories of the deceased. The control treatment encouraged the pa- tient to avoid thinking of the deceased and to get on with life. This treat- ment condition was designed to mimic what the authors perceived to be the usual experience of the bereaved in their social encounters with family and friends. Individual patients in both groups were treated by a psychiatrist or nurse therapist for three 90-minute sessions over two weeks. Self-ratings before therapy, immediately after treatment, and at 4, 8, 12, and 28 weeks after treatment measured pathology of grief {physical symptoms, avoidance, hostility-nnger-guilt, attitude toward self and the deceased), depression, anxiety, and social adjustment. Im- mediately after the two-week treatment and at the subsequent follow- up times, guided mourning patients showed improvement on most measures {sometimes statistically significant improvement) while con- tro! patients either did worse or showed no trend toward change. There appear to be only two controlled studies in the literature on the effects of psychotherapeutic support for parents whose child has died or is dying. In an effort to assist parents in adjusting to their child's proba- ble death, Kupst et al.2~ randomly allocated 64 families of children with leukemia who were being treated at Children's Memorial Hospital in Chicago to one of three groups: intense, moderate, and no support {from social workers and master's level counselors). No major differences were ford between the groups on self-reports or professional ratings at 3, 6, 12, or 24 months after the initial diagnosis. Forrest et a].4 offered immediate support and counseling for up to six weeks to mothers of stilIboms and of babies who died within a week of birth. The social and emotional functioning of the experimental group was significantly bet- ter than that of the controls at 6 months after bereavement; by 14 mouths there were no significant differences between the groups. This finding is consistent with Vachon's findingsSi from her intervention with widows, namely, that support may speed up the recovery process but that in the long run most people recover on their own. Finally, although there are no controlled studies of therapeutic inter- ventions for bereaved children, there is one Israeli study of an interven- tion designed to assist children whose parent was dying.38 Two to three months of weekly counseling during the parent's illness resulted in a significant decrease in children's anxiety and significant improvement in scholastic performance and social functioning at school, while

BereavementIntervention Programs / 269 matched unsupported controls did worse during this time. Unfortu- nately the children were not followed after the parent's death, so the long-term effects of anticipatory bereavement support are not known. THE ROLE OF MEDICATIONS Medications (pharmacologic interventions) may be used alone or in conjunction with any of the psychosocial approaches just described. Pharmacologic interventions have potential clinical value as well as im- portant theoretical implications regarding the nature of the bereave- ment process. The medications used to assist the bereaved are almost always psychopharmacologic agents from three classes of drugs: A) anti-anxiety drugs, {2) hypnotics, and (3) antidepressants. Anti-Anxiety Drugs These drugs also are known as "minor tranquilizers," "anxiolytics," and "sedatives." The most commonly prescribed drugs in this class are benzodiazepines, which are most often prescribed by primary care phy- sicians to relieve symptoms of anxiety, fear, tension, "stress," or psy- chic pain. Controlled studies indicate they are of value in reducing dis- tress in acute stress and situational neurotic reactions. However, no controlled studies have yet been conducted specifically on bereaved per- sons. Numerous surveys {see Chapter 2) report that bereaved persons use these drugs rather frequently, particularly during the early weeks of grief when subjective distress is greatest. Hypnotics Since insomnia is one of the common symptoms of grief, it is not sur- prising that many studies report use of hypnotics {sleeping pilIsJ by many bereaved persons. Some of these hypnotics require a prescription (especially barbiturates and hypnotic benzodiazepines) while others do not. No studies have been directed specifically at evaluating the efficacy of any of these drugs in bereaved persons.~249 An tid epressan ts Tricyclic antidepressants and monoamine oxidase inhibitors have been shown to be effective in relieving symptoms and other manifesta- tions of clinical depression in a large number of controlled studies. i9~28 Because the symptoms of grief may include sadness, hopelessness,

270 / Bereavement: Reactions, Consequences, and Care bodily complaints, insomnia, and other features similar to clinical de- pression, it is not surprising that these drugs are prescribed for some grieving persons. In actual clinical practice, however, they are used rela- tively infrequently-far less frequently than anti-anxiety Snugs and hyp- notics. Theorenca] Issues As indicated above, the possible value of psychopharmacologic medi- cation for relieving the symptoms of acute grief is not substantiated by current evidence. But even if systematic studies were to demonstrate the efficacy of any of these drugs in reducing some of the distressing symptoms of grief, controversy would continue over their appropriate use. This controversy derives from different theoretical perspectives as to the "normality" or adaptive value of grief. Many clinicians and theorists who view grief as normal believe that the use of drugs to reduce distress will interfere with the adaptive value of "grief work," and that failing to grieve or suppressing grief predis- poses the individual to later mental disorder or medical disease.28 Little evidence has been systematically collected to support this view See Chapter 2~. Other clinicians and theorists are concerned over the possible impact of the intense distress of grief on biologic processes and functional activ- ity. Viewing grief itself as a stressor, they support the use of psychophar- macologic drugs to relieve discomfort and to promote coping skills. However, even these clinicians tend to recommend caution "The fi- nal resolution of loss is better accomplished by psychological help than by the use of drugs. Although drugs may be helpful in treating the . bereaved, their use is adjunctive, symptomatic, and limited in time."8 Recommendations for Clinical Practice In the absence of scientific evidence, the committee is not able to make firm recommendations for clinical practice. The majority of cTini- cians who report using psychopharmacologic drugs for bereaved persons do so in the early phases of intense distress. However, concern has been expressed over possible adverse effects of these compounds. In particu- lar, use of benzodiazepines or barbiturate-like drugs entails some risk of developing patterns of habitual use or frank drug dependence; in sui- cidal overdose, especially in combination with alcohol, all of these drugs may be lethal; and certain Tong-acting steeping medications {e.g., flurazepamJ and most tranquilizers carry risks of impaired daytime mo

Bereavement Intervention Programs / 271 tor coordination and mental acuity-problems that can be especially hazardous to the elderly.~249 Concern about adverse effects of certain benzodiazepines on elderly patients was also embodied in the recommendations made by a recent National Institutes of Health/National Institute of Mental Health con- sensus pane] on drugs and insomnia.30 The pane! asserted that "short- term insomnia is usually associated with a situational stress E.g., acute personal loss).... If drug treatment is elected, the smallest effective dose should be used . . . for a treatment period usually of not more than 3 weeks. Intermittent use of the drug is advisable, with skipping of nightly dosage after ~ or 2 good nights' sleep.... Aged patients, who tend to clear drugs more slowly and who are more sensitive to a given blood level of benzodiazepines, are more likely to develop cognitive and motor impairments when given the more slowly eliminated benzo- diazepines te.g., flurazepam and diazepam]. Ataxia and problems with memory and thinking are possible complications that may not appear until several weeks after beginning treatment.... Dosages for these populations must be carefully adjusted, and more rapidly eliminated drugs [e.g., temazepam, triazolam, and oxazepam] are preferable." Although the committee is aware that antidepressants are sometimes used for bereaved persons, it does not recommend their use for individ- uals whose grief remains within "normal" bounds of intensity and du- ration. It should be noted that the use of antidepressants for grief (as opposed to depression) would be novel practice and, technically speak- ing, a new indication not currently approved by the Food and Drug Ad- ministration. If a bereaved individual were to meet the criteria of per- sistent symptoms and impaired function for a diagnosis of clinical depression, this diagnosis in itself would justify consideration of pre- scribing antidepressants.~3 However, even then it should be noted that although antidepressant drugs are of demonstrated value for many forms of clinical depression, not all diagnosed patients should automati- cally be prescribed drugs. As discussed in earlier chapters, many bereaved individuals have depression-like symptoms during the early phase of grief. After a year, 10-20 percent still have persistent symptoms of depression. Some com- mittee members argued that because of excessive caution about the treatment of depressive symptoms early in grieving, those who are truly depressed will be treated later than desirable. However, it is usually not possible to predict in the acute phase of grief who will remain depressed, and other committee members pointed out, therefore, that early drug therapy would result in the unnecessary treatment of a very substantial portion of bereaved individuals.

272 / Bereavement: Reactions, Consequences, and Care Recommendations for Research In view of the lack of systematic controlled studies and the continu- ing controversy, the committee recommends that the National Insti- tute of Mental Health sponsor and support studies on the impact of medications on the grieving process, especially the efficacy and adverse effects of benzodiazepines and tricycTic antidepressants. Such studies would examine the ability of drugs to reduce distress and promote social functioning as well as their potential for negative consequences, such as masking grief reactions that may appear later in distorted form. Studies should be conducted to evaluate the short-term efficacy of drugs on specific symptoms as well as on coping abilities and on social, occupational, familial, and psychologic functioning. Studies involving long-term follow-up are also desirable to test hypotheses about the rela- tionship between delayed, "absent," or suppressed grief and the subse- quent development of medical illness, depression, alcoholism, and other emotional problems. The committee notes the importance and difficulty of conducting methodologically and ethically sound drug studies. Since grief is not an illness and there is no established "treatment of choice, " some may fee! that drug trials in this area raise special ethical considerations. As is true of all human research, subjects will need to be well informed of the study goals, methods, possible adverse consequences, and remedies should these adverse consequences occur. For example, the adverse ef- fects of antidepressant medications when used properly for limited time periods {up to six months are relatively minor and somewhat predicta- ble. When used for more extended periods, their effects are less well known. Subjects involved in drug trials would need to be informed of uncertainties such as these. SUMMARY AND CONCLUSIONS This chapter has described four types of programs for helping the be- reaved and has analyzed the scant research evidence for the efficacy of each in an effort to address several basic questions. Should AL Bereaved People Be in an Intervention Program: The evidence suggests that everyone needs support, reassurance, and some education and information following bereavement. This may be provided by family, friends, or clergy in an informal way, by laypeople in similar circumstances, by a community support group, or by health

Bereavement Intervention Programs / 273 professionals. As discussed in the preceding chapter, health profession- als have a responsibility to offer support, to inform the bereaved of addi- tional resources in the community Such as mutual support groups), and to monitor their progress and make referrals to mental health profes- sionals as appropriate. There is no evidence that all bereaved people need or want formal in- terventions, though mutual support groups may fill a gap for those who have little other social support. There is some evidence to suggest that intervention programs help people to move faster through the grieving process, but ultimately most people get through it regardless of whether they have formal support. Still, shortening a process that is painful for an individual and for those around that person may be of considerable intrinsic value and deserves further study. Which Programs Are Appropriate for Whoml And! When The answer to this question is not entirely clear from the existing evi- dence. Furthermore, because most people do not experience enduring negative consequences or suffer ill health following bereavement and because of the paucity of outcome data regarding the efficacy of inter- ventions, it would be unwise to make recommendations about the ap- plicability of specific interventions. Nonetheless, some guidance can be offered about the appropriateness of the general approaches under vari ous circumstances. Experience from the widow-to-widow programs suggests that imme- diately following bereavement people are not generally ready to seek help outside their immediate social network or to benefit from it; for at least several weeks they are likely to fee! more or less numb and to have the support of family and friends. Experiences from mutual support groups and hospices suggest that after several weeks one-to-one support from someone who has experienced bereavement may be useful. By this time family and friends may have returned to their usual activities and some of the reality of the loss may have begun to sink in. The opportu- nity to talk with another person who has had the same experience, can offer practical advice, and can assure the newly bereaved person that things will seem better soon is often very reassuring. Not until several months after bereavement do most widows feel ready to join a support group of other widows. There is some evidence suggesting that a formal program during the very early period of crisis can be helpful for widows who are at high risky or for mothers who lose newborns.4 The latter point was also dis- cussed at the site visit to the Boulder hospice, which sponsors a support

274 / Bereavement: Reactions, Consequences, and Care group for parents who lose newborns. The experience of staff working with this group is that these parents want and need support and guid- ance immediately after the death, because there typically is no one in their social network who has shared the experience of the birth or who knew the infant. For people who experience normal reactions and who are not seen as being at particularly high risk for adverse consequences of bereavement, the support of family and friends, perhaps augmented by some type of mutual support intervention, will generally be sufficient. However, for people who define themselves or who are seen by others in the commu- nity as continuing to be overwhelmed by their grief {or unable to grieve), psychotherapeutic interventions may be warranted. In addi- tion, certain categories of people may be at such high risk following be- reavement that they should perhaps lee evaluated by mental health pro- fessionals and followed for some period of time, with psychotherapeutic interventions as indicated. These groups include young children who have lost a parent or sibling, people with a history of psychiatric disor- ders {especially depression), and people related or close to someone who committed suicide. How Effective Are the Various Interventionst As indicated above, very little is known about the ability of any inter- vention to reduce the pain and stress of bereavement, to shorten the normal process, or to mitigate its tong-term negative consequences. While the few controlled studies that have been conducted report con- tradictory findings, subjective reports attesting to the helpfulness of in- terventions abound. All intervention strategies, from well-mear~ing words of comfort of- fered by friends to professionally rendered psychotherapy, have a poten- tial for both positive and negative consequences. Yet the possibility of iatrogenic effects Poor outcomes due to the interventions is rarely dis- cussed, and their occurrence in psychosocial interventions has never, to our knowledge, been rigorously studied. For example, although numer- ous anecdotal reports and a few controlled studies attest to the positive features of mutual support, it is possible that peer pressure exerted on individuals who are psychologically vulnerable following bereavement could lead to some poor outcomes, such as feelings of failure for not living up to group expectations or changing in ways that, while consis- tent with group norms, are ultimately not helpful to the individual. Per- haps those who are vulnerable to these potential problems are the ones who choose not to participate in these programs. Little is known about the selection biases that predispose some people to seek help and others

Bereavement Intervention Programs / 275 not to, on what bases people choose specific modalities of help, or about how people would have fared without interventions. Recommendations for Future Preventive Intervention Research Before recommendations can be made about the appropriateness of specific interventions under particular circumstances, a considerable amount of research is needed. All such studies should be conducted within a context that acknowledges the normal variability in individual responses and adaptation to bereavement, cultural diversity, respect for grief as a normative process, and awareness of the dangers of seeing vari- ations within a normal range as health problems. As discussed in several previous chapters, there is a great need to reach consensus about what constitutes appropriate outcomes of the bereavement process and how to measure them. Broad categories of outcomes for which measures are needed include diminished distress levels such as decline in depressive symptomatology; inappropriate or excessive use of cigarettes, alcohol, sedatives, and medical care; physical health effects including exacerba- tion of previous illnesses; social role performance; and intrapsychic pro- cesses, such as changes in self-image and attributions. In order to be meaningful, intervention research must be specific to the age and sex of the survivor, the nature of the lost relationship, the nature of the death, and the phase of bereavement. These basic variables and other modifiers of responses, such as the actual and perceived availability and adequacy of social support, must be adequately controlled for in the research de- signs and analyses before conclusive statements can be made about the impact of interventions. Research on preventive interventions should be designed to test hypotheses generated from basic research on the grieving process and its multiple outcomes. With the new Medicare funding, hospices provide a natural opportunity for large-scare studies of bereavement and the impact of a variety of different interventions on outcomes. With these general considerations in mind, several specific areas would be useful to study: · the differential impact of interventions aimed at assisting the be- reaved during various phases of the grieving process (such as before and immediately after death) and designed to assist with different aspects of bereavement Such as immediate distress or Tonger-term social adaption and reorganization) · the differential impact of interventions aimed at specific elements of the stress model: the context of the event, modifiers such as personal- ity variables, coping styles, and social support networks

276 / Bereavement: Reactions, Consequences, and Care · the impact of interventions on high- versus Tow-risk people, includ- ing identification of the level of risk, ameliorative measures, and spe- cific outcomes · the characteristics of different mutual support and psychothera- peutic approaches and their ability to effect recovery, diminish psycho- logic distress, and promote social functioning · the relative benefits of one-to-one versus group support at various phases of the bereavement process · the relationship between self-reported and objectively measured outcomes · the use of medications {sedatives, hypnotics, and antidepressants) and their effects on the course of bereavement · the effects of different types of interveners on outcomes · the effects of psychosocial and pharmacologic interventions on ba- sic biologic processes involved in the course and outcomes of bereave- ment in animals and human beings · the impact of information about bereavement processes on the be- havior of professionals and on the behavior, course of grieving, and out- comes of bereaved individuals REFERENCES . Barrett, C.J. Effectiveness of widows' groups in facilitating change. fournal of Con- sulting and Clinical Psychology 46:20-31, 1978. Bloom, B.L. Community Mental Health: A General Introduction. Belmont, Calif.: Wadsworth Publishing, 1975. 3. Cameron, T., and Brings, B. Bereavement outcome following preventive interven- tion: a controlled study. In: The R. V.H. Manual on Palliative/Hospice Care {Aje- mian, I., and Mount, B.M., eds.~. New York: Arno Press, 1980. .. Forrest, G.C., Standish, E., and Baum, T.D. Support after perinatal death: a study of support and counselling after perinatal bereavement. British Medical Journal 285:1475-1479, 1982. a. Gerber, I., WieIler, A., Battin, D., and Arkin, A.M. Brief therapy to the aged be- reaved. In: Bereavement: Its Psychosocial Aspects Schoenberg, B., and Gerber, I., eds.~. New York: Columbia University Press, 1975. . Greer, D., Mor, V., Sherwood, S., Morris, T.N., and Birnbaum, H. {eds.J Final Re- port of the National Hospice Study. Submitted to the Health Care Financing Ad- ministration, Washington, D.C., 1984. Hamburg, B.A., and Killilea, M. Relation of social support, stress, illness and use of health services. In: Healthy People: The Surgeon General's Report on Disease Pre- vention and Health Promotion, Vol. II. Washington, D.C.: U.S. Government Print- ing Office, 1979. 8. Hollister, L. Psychotherapeutic drugs in the dying and bereaved. Journal of Thana- tology 2: 623-629, 1972. If. Horowitz, M.~., Krupnick, I., Kaltreider, N., Wilner, N., Leong, A., and I\/larmar, C.

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"The book is well organized, well detailed, and well referenced; it is an invaluable sourcebook for researchers and clinicians working in the area of bereavement. For those with limited knowledge about bereavement, this volume provides an excellent introduction to the field and should be of use to students as well as to professionals," states Contemporary Psychology. The Lancet comments that this book "makes good and compelling reading....It was mandated to address three questions: what is known about the health consequences of bereavement; what further research would be important and promising; and whether there are preventive interventions that should either be widely adopted or further tested to evaluate their efficacy. The writers have fulfilled this mandate well."

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