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CHAPTER 1 In trocluction The father, Hermann Castorp, could not grasp his loss. He had been deeply attached to his wife, and not being of the strongest himself, never quite recovered from her death. His spirit was troubled; he shrank within himself; his benumbed brain made him blunder in his business, so that the final of Castorp and Son suffered sensible finan- cial losses; and the next spring, while inspecting warehouses on the windy landing-stage, he got inflammation of the lungs. The fever was too much for his shaken heart, and in five days, notwithstanding all Dr. Heidek~d's care, he died. Thomas Mann, The Magic Mountain7 r ~ . . his passage, from the 1924 book that assured the German novelist's reputation in America, was written 30 years before health scientists began to investigate systematically what it seemed to say: That one who is bereaved can weaken and even die of his grief. Epidemiologists were among the first to study the effects of death on survivors. They looked at rates of death and disease among bereaved persons; then they compared these rates with those for persons who had not lost a family member through death. What they learned generally lent scientific credence to what poets, novelists, and playwrights had long suggested. Bereavement affects peo- ple in different ways, and for some, especially those whose health is al- ready compromised, bereavement can exacerbate mental and physical 3
4 / Bereavement: Reactions, Consequences, and Care health problems, or even lead to death. Hermann Castorp's troubled spirit and shaken heart did, it seems, appear in the epidemiological sta . . tlStlCS. For most people bereavement is a fact of life. Only those who them- seIves die young escape the pain of losing someone they love through death. Every year an estimated eight million Americans experience the death of an immediate family member. Every year there are 800,000 new widows and widowers. There are at least 27,000 suicides in this country annually, and probably many more, since suicide is underre- ported. Each year approximately 400,000 children under the age of 25 die. Just as each type of relationship has special meaning, so too does each type of death carry with it a special kind of pain for those who are left behind. As one psychiatrist said, "When your parent dies, you have lost your past. When your child dies, you have lost your future."9 The anguish of those left behind has always concerned society, and every culture has mourning rituals to deal with that pain. Today scien- tists, policymakers, educators, and the public are all concerned with the nature of bereavement and its toll on survivors. Biologists and behav- ioral scientists now advance theories to account for the impact of grief and propose strategies to ease both its acute pain and its Tonger-term effects. The shapers of public policy and educators in the health professions also are becoming more concerned about bereavement's toll. There is strong and growing public interest in preventing stress-related illness, including that which may be precipitated or exacerbated by grief. Health professionals, technically better equipped than ever before, of- ten are seen as having lost the compassion that once was the foundation of the healing arts. If compassion and understanding can be imparted through training, future clinicians could better deal with the realities of death, the fears of patients, and the grief of bereaved families. This widening interest in bereavement is at least partly an outgrowth of recent social developments. First, achievements in medical science have shifted the customary causes and locations of death. Most people now die of chronic diseases in institutions rather than from acute infec- tions at home. New technology also maintains the uncertainty of death for longer periods. If someone whose life is prolonged is comfortable and in reasonably good spirits, the effect can be regarded as positive. But if life is prolonged for someone who is unconscious or in pain, or whose personality and mental function have been dramatically altered by the illness or treatment, then such extensions of life may make the antici- pation of death and the subsequent bereavement more difficult for sur- vlvors.
Introduction / 5 The second development, due primarily to geographic mobility, is a diminished access of the bereaved to traditional social supports. Con- trary to popular stereotypes, extended family contact is frequent.~° However, over a five-year period. one-fourth of the population moves ~n 1 - rr . ~· . ~. ~_ _ , ,¢ i, _ ~ _ ~ _~ ~ ~ ~ ~^ ~, _ v ~ ~ a different location,: making face-to-face contact limited. This places great demands on the nuclear family for ongoing emotional and social support when a member of such a family dies, both because other family members may live far away and because bereaved persons who are new to a community lack strong links to other people or institutions that could assist them. MANDATE AND PROCESS OF THE STUDY At the request of the Office of Prevention of the National Institute of Mental Health, the Institute of Medicine {IOM) appointed a committee to study the factors that affect the bereavement process and its impact on general and mental health. This study is related to a series of recent activities in the Division of Mental Health and Behavioral Medicine of the IOM clearing with the relationship between psychosocial stress and physical disease and the place of behavioral interventions within gen- eral health care.23 5 6 The particular framework of the bereavement study grew out of the Institute's report on stress and human health.2 Almost uniformly researchers and the public identify death of a close family member as the most potent stressor in ordinary life. However. few earlier studies focused specifically on bereavement and none have provided a comprehensive synthesis of the evidence that attempts to as- sess and explain bereavement's impact. Thus the current study was mandated to address the following questions: · What can be concluded from available research evidence about the health consequences of bereavement? · What further research would be especially important and promis ing to pursue? · Based on both research evidence and informed judgment, are there preventive interventions that should be recommended for more wide- spread adoption in the health care system? Which ones are not yet ready for such adoption but should be tested promptly for their value? Committee members included clinicians and researchers from many disciplines, including psychiatry, psychology, social work, nursing, medicine {internal medicine, family practice, and pediatrics), the neurosciences, epidemiology, sociology, anthropology, and the minis- try.
6 / Bereavement: Reactions, Consequences, and Care To supplement an analysis of the literature on bereavement, commit- tee members and staff visited eight intervention programs around the country. Particular programs were chosen because of their extensive ex- perience or innovative approaches to intervention with the bereaved or because of their research on the topic. The sites were not selected as models to emulate, nor were they in any sense representative of the uni- verse of programs, although an attempt was made to visit programs with various distinguishing characteristics.* REPORT OVERVIEW While recognizing the similarities between bereavement and other stressful events and acknowledging that many different kinds of losses occasion grief, this report focuses principally on reactions to the death of a closely related family member. One objective is to synthesize the evidence from many disciplines and thereby better describe the nature and consequences of bereave- ment, examine its underlying biologic and psychologic mechanisms, and study the factors that may protect some individuals but leave others at risk for poor outcomes. Another objective, however, is simply to provide practical help when- ever possible. Thus, the report discusses when and how to help the be- reaved, and how effective the various interventions are. Recommenda- tions for clinical practice and for promising research appear throughout. Part ~ of the report focuses on bereavement reactions and con- sequences. In Chapter 2, the epidemiologic studies of the health consequences of bereavement are reviewed. The somewhat conflicting evidence linking bereavement with increased rates of mortality, mor- bidity, symptom development, and the use of health services is dis- cussed. The epidemiological evidence for increased mortality and mor- bidity is not as clearcut as once thought. As is true of most potentially stressful events, the association between bereavement and enduring negative consequences is not randomly distributed in the population. Instead, there are factors that predispose some people to increased risk of mortality {premature death), some types of morbidity {ilIness, either physical or psychiatric, and behavior that may ultimately damage their health. Some of these factors can be identified before or very soon after bereavement, thereby raising the possibility of early preventive inter- vention with those at high risk. *See Footnote on page 11.
Introduction / 7 Chapters 3 through 5 deal with psychosocial reactions of adults and children to bereavement. Unlike Chapter 2, which focuses on easily measured and quantifiable outcomes, these chapters draw primarily on clinical observations and theoretical constructs from the psychiatric iit- erature. Chapter 3 describes the grieving process in adults and the sev- eral conceptual frameworks that have been used to try to account for the basic process and outcomes (both normal and abnormal). Chapter 4 fo- cuses on reactions to particular types of Tosses of a spouse, a child, a parent, a sibling, and death by suicide. The nature, meaning, and func- tions of each type of relationship are discussed in an effort to explain particular psychosocial reactions to loss. This chapter includes suicide as an example of a particularly stressful type of death that is believed to complicate the bereavement process. Bereavement in childhood is considered especially hazardous in both the short and long term. Chapter ~ examines the large body of literature on the nature of grieving in children and discusses the implications for subsequent development. Here, the report tries to offer guidance about how to talk to children about death and how to recognize when children may need professional help with their grief. Part ~ of the report examines bereavement from the perspectives of the biologic and social sciences in an effort to further understand the emotional reactions and health consequences that may ensue. Biologi- cal and behavioral scientists have studied the effects of various natu- rally occurring and laboratory-induced stressors on animals and hu- mans. Bereavement has been simulated by separating infant animals from their mothers. Human bereavement has been studied in parents anticipating the death of a child, in recently bereft parents and spouses, and in sub jects who have acute grieving responses revived in laboratory settings. In all these situations, alterations in cardiovascular, endo- crine, and immune system functioning have been recorded. The medi- cal importance of such changes is not known, however; some of these changes might be adaptive and some could be precursors of actual dis- ease. Nor has it been determined to what extent the physiologic reac- tions to bereavement are special compared to other stressors, or whether they are unique. These and other issues are discussed in Chap- ter 6. Chapter 7 reviews the research on the emotional and behavioral re- sponses of monkeys to separation. Laboratory studies such as these per- mit the controlled manipulation of environmental factors in order to examine the effects of various antecedent and post-separation condi- tions on responses and outcomes. These animal studies provide partial
8 / Bereavement: Reactions, Consequences, and Care models for human behaviors and may even provide clues for developing effective preventive intervention strategies with the bereaved. Chapter ~ discusses the sociocultural context of and influences on grief and mourning. Sociologists and anthropologists have long been in- terested in the effects of bereavement on social group functioning and in the possible protective role played by sociocultural factors. Clearly there is a wide variation in cultural norms for outward expressions of mouming. The extent to which internal grieving processes also vary in different cultural groups is a controversial question still to be resolved. Various approaches to assisting the bereaved are discussed in Part Ill of the report. Because health professionals and institutions are fre- quently involved with families prior to death, the committee holds that they also have some obligations to families after death. The nature of these roles and responsibilities are discussed in Chapter 9, and sugges- tions are presented for improving follow-up activities with bereaved in- dividuals. Chapter 10 examines several of the more formal approaches to be- reavement interventions. The goals and methods of four major types of interventions are described mutual support groups, hospices, various professional psychotherapeutic approaches, and drug therapies. The scant research on the efficacy of each is presented. Although most chapters contain their own conclusions and recom- mendations, Chapter ~ ~ integrates these and returns to the three ques- tions the committee was asked to consider. Because of its broad scope, this report ShOUld appeal to many audi- ences. The synthesis of findings from the many disciplines that study bereavement and the recommendations for future research should pro- vide useful information to investigators as well as to government agen- cies and private foundations wishing to fund promising research in this area. The committee has added its own collective thinking to the re- search evidence in an effort to provide useful advice to clinicians as well ~. . . ~ as to the general public. This volume should also be valuable to stu- dents of the major health professions who wish to learn more about be- reavement. Finally, it should be of interest to policymakers and lay and professional people interested in designing preventive intervention pro- grams to assist the bereaved. BEREAVEMENT AND STRESS THEORY This report examines bereavement from a number of disciplinary per- spectives and conceptual frameworks. The broadest of these is "stress theory," which seeks to explain the relationships between a stressor,
Introduction / 9 the physiologic and emotional reactions to it, and the resulting health consequences, if any. Since World War It, scientists from many disciplines have conducted numerous studies of the effects of stressful life events on health and welI-being.2 Significant research advances in this field have followed from the work of Holmes and Rahe,4 who developed a quantitative tech- nique for assessing the relative stress imposed by various types of life events, including loss and bereavement. They considered Toss of a spouse the most severe change in adult life; other life events {both posi- tive and negative), such as sickness of relatives, marrying, moving, or Toss of a job, were also considered stressful but were weighted less heav- iTy. Although both the reliability and validity of the original scale {and numerous other life-events scales modeled after itJ have been chal- lenged,8 the findings from hundreds of studies have generally supported the proposition that life stressors of all types place individuals at greater risk for a variety of physical illnesses and mental disorders.2 Viewed in this context, bereavement represents one specific type of a life-event stressor. Though usually considered to have the most power- ful impact of all stressful life events, in many respects bereavement is not unique. Loss through death, like loss through divorce or loss of a job, results in perturbations in physiologic functioning, emotional dis- tress, and social disorganization, including the need to redefine one's place in society. As with other stressors, the consequences of bereave- ment are not uniform. The sudden and unexpected suicide of a young husband and father, for example, is likely to have much more profound effects on surviving family members than the Tong anticipated death of a beloved grandparent after a protracted illness. Furthermore, although the death of someone close is stressful by definition, many factors can modify that stress and affect long-term outcomes. Although clearly not unique in all respects, some aspects of Toss through death are distinctive. Even superb coping abilities cannot alter the finality of death. This helplessness and total inability to control the event of death may make bereavement a particularly stressful life event. DEFINITIONS With so many different disciplines studying a sub ject, it is not surpris- ing that the same terms are variously employed to describe the process and its consequences. In this volume the following definitions are used: · bereavement: the fact of loss through death. · bereavement reactions: any psychologic, physiologic, or behavioral response to bereavement. The term "reaction" is not meant to suggest
10 / Bereavement: Reactions, Consequences, and Care automatic, reflex responses 1:lor to imply that any particular reaction is universal. · bereavement process: an umbrella term that refers to the emer- gence of bereavement reactions over time. · grief: the feeling {affect) and certain associated behaviors, such as crying. · grieving process: the changing affective state over time. · mourning: in the social science sense, the social expressions of grief, including mourning rituals and associated behaviors. This defini- tion of mourning is a departure from Freud's usage, where the term re- fers to an internal psychologic state and process. Although these definitions are used consistently in this volume, the committee recognizes that they differ from the usage of some disci- plines, especially some of the mental health professions. Wherever pos- sible, the text specifies particular affects in order to avoid confusion be- tween grief and mourning and also couples these basic terms with adjective modifiers to make their meaning clearer in the context of par- ticular discussions. REFERENCES 1. Bureau of the Census. Statistical Abstract of the United States: 1982-83. Washing- ton, D.C.: U.S. Department of Commerce, 1982. 2. Elliott, G.R., and Eisdorfer, C. {Eds.) Stress and Human Health: A Study by the Institute of Medicine, National Academy of Sciences. New York: Springer, 1982. 3. Hamburg, D., Elliott, G., and Parron, D. Health and Behavior: Frontiers of Re- search in the Biobehavioral Sciences. A Report of the Institute of Medicine. Wash- ington, D.C.: National Academy Press, 1982. 4. Holmes, R.H., and Rahe, R.H. The social readjustment rating scale. [ordeal of Psy- chosomatic Research 11:213-218, 1967. 5. Houpt, J., Orleans, C., George, L., and Brodie, H.K. The Importance of Mental Health Services to General Health Care. Cambridge, Mass.: Ballinger Publishing, 1979. 6. Institute of Medicine. Sleeping Pills, Insomnia, and Medical Practice. Washington, D.C.: National Academy of Sciences, 1979. Mann, T. The Magic Mountain {1924) {H.T. Lowe-Parker, translator}. New York: Alfred A. Knopf, 1963. 8. Rabkin, J.G., aIld Streur~ing, E.L. Life events, stress and illness. Science 194:1013- 1020, 1976. 9. Schiff, H.S., quoting Eliot Luby. The Bereaved Parent. New York: Penguin Books, 1977. 10. Shanas, E., Townsend, P., Wedderbum, D., Friis, H., Milhaj, P., and Stehouwer, T Old People in Three Industrial Societies. London: Routledge and Kegan Paul, 1968.
Introduction / 11 FOOTNOTE The eight sites visited and the rationales for selecting them were: · The Children~s Hospital National Medical Center, EmergencyRoom {Washington, D.C. J. This setting was chosen because of its written protocol for dealing with dead-on- arrival cases [DOAsJ, which specifies how parents of children should be assisted in the immediate period of crisis and seeks to alleviate staff stress as well. The potential for more widespread use of such protocols was of particular interest to the Committee. · The Children~s Hospital National Medical Center, Neonatal ICU {Washington, D.C. J . As regional referral center for seriously ill newborns, Children's Hospital is expe- rienced in assisting parents who are anticipating the death of their infants. The nature of anticipatory bereavement reactions, the use of multi-disciplinary teams, and attempts to follow up with parents subsequent to bereavement were of particular interest. · The St. Francis Center [Washington, D.C.J. This center includes professional counseling and lay assistance programs for people prior to or following bereavement, as well as educational programs for professionals and lay people. Of special interest were the Center's extensive links to the Washington community and its nationwide leader- ship role in death education. · The Hospital for Sick Children {Washington, D.C.J. As a chronic care facility for very sick and handicapped children, this site provided an opportunity to learn about the effects of lengthy anticipatory bereavement reactions on parents and siblings, the ef- fects of bereavement on staff who typically have cared for children for years prior to their deaths, and approaches to assisting both parents and staff. · The Center for Preventive Psychiatry White Plains, N.Y.J. This center is one of very few in the country devoted specifically to the care of children who have experi- enced major life crises, including bereavement. It was chosen for a site visit in order to gain a better understanding of children's reactions to bereavement including the effects of situational factors and preventive intervention strategies on long-term outcomes. · The Center for the Study of Neuroses, Langley-Porter Institute {San Francisco, Cal. J. This center, which is part of the University of California Medical Center, is one of very few places in the country that is conducting systematic research on the efficacy of particular psychotherapeutic interventions on the course and outcomes of adult be- reavement. When the IOM study began, very little of this research had been published. · Boulder County Hospice {Boulder, Col.J. This particular hospice was chosen for a site visit because of its extensive attention to the care of bereaved relatives, and its lead- ership role in developing educational materials and in training professionals and lay hos- pice volunteers around the country. · Palliative Care Service, Royal Victoria Hospital Montreal, CanadaJ. In addition to its bereavement service component, the Palliative Care Service is one of very few hos- pices worldwide that has engaged in research on bereavement. It is currently in the final stages of a very large study of the impact of hospice versus traditional care on bereaved families, and of the relative efficacy of trained volunteers versus trained nurses on the course of bereavement. A detailed summary of the site visits {"Site Visit Case Studies"J is available from the National Academy Press, 2101 Constitution Ave., NW, Washington, DC 20418.