Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.
Roles of Health Professionals and Institutions
. ~ ~ .a :~,.i... :.- Health care professionals have an obligation tofami~y members of ter~nina17y id orrecent~y deceased patients. 1b carry out this role responsibly, they should be able to communicate about sensitiveissues, to understand the nature of normal and abnormal bereavement reactions' and to be knowledgeable about commzmity resources to which the bereaved can be referred for specialized help if needed. LU
CHAPTER 9 Roles of Health Professionals and Institutions Although grief is not an illness, health professionals and health care institutions have important roles to play in caring for the bereaved, both before and after the death of a pa- tient. One hundred years ago, most people were born and died at home; now most are born and die in a hospital. The widespread perception of hospitals as bureaucratic, impersonal institutions gives people the im- pression that the psychosocial needs of dying people in hospitals are of- ten underserved, that families are provided no regular help in under- standing and coping with cleath, and that the capacity for compassion has been lost in a technologically oriented, strange worId.is 42 A recent editorial in the British Medical [oumaIi° pointed out that the failure of care-givers to respond to families' needs for reassurance and information has been fostered by increasing fears of malpractice actions as well as by physicians' inabilities to deal with their own failures. How- ever, several concrete, helpful suggestions were made: First, . . . medical students and young doctors must be taught how to give help and comfort to the relatives of patients who have died .... Secondly, consultants and gen- eral practitioners should recognize and accept an obligation to talk to the relatives This chapter is based on material prepared by Morris Green, M.D., chairman of the study committee, from background papers by committee members Eric Cassell, M.D., Jimmie Holland, M.D., Ida Martinson, R.N., Ph.D., Jack Medalie, M.D., and loan Mul- laney, D.S.W., and by Catherine Low of Memorial Sloan-Kettering Cancer Center, New York. 215
216 / Bereavement: Reactions, Consequences, and Care whenever there is an unexpected death.... An interview should be offered not every relative has the courage or the social skills required to ask for one and its prime purpose should be to give comfort and answer questions.... Finally, twe] must not let lawyers set our priorities.... Most relatives simply want to know what hap- pened. That Americans want such issues to receive more attention is evi- denced by the grass-roots development of the primary care and hospice movements and by the establishment of numerous support groups to assist the bereaved (discussed further in Chapter lOJ. In no small part, these have come about because of the shortcomings of traditional medi- cal settings in meeting emotional needs. With the increased emphasis ~ ~ _ ~ ~ _ ~ ~ ~ ~ ~ _ 1 1 ~ ~ . ~ or1 patients perceptions ot illness and death, quality of life, and medical ethics, more hospitals are beginning to acknowledge a responsibility for providing emotional support that traditionally rested with families and chaplains. However, the nature of an institution's responsibility to sur- vivors, once the immediate concerns surrounding a death have been dealt with, is unclear. In recent years there have been striking improvements in the care of dying people and their families. Yet family care following bereavement is still generally meager.23 {The terms "family" and "relatives" are used in this discussion in their broadest senses, to describe the people most affected by an individual's death, although it is worth noting that these individuals are not necessarily related to the patient through birth or marriage. J Limitations in the attention paid to the bereaved by health care professionals appear to derive from three factors: jI) their inade- quate training about the nature of bereavement and their own personal feelings toward death; (2) the failure of health care institutions to ac- knowledge their responsibility for bereavement follow-up, the stress that caring for dying and bereaved persons puts on their staff, and the need for sufficient staff time for these activities; and i31 the financial constraints imposed by the current structure of th~rd-party reimburse- ment arrangements. Despite currently inadequate therapeutic guidelines, however, it is necessary for health professionals to formulate some approach to the be- reaved because, whether they are trained or untrained, those who inter- act with a bereaved person will have an impact-negative or positive- on that individual. This chapter offers practical guidance on professional and organizational practices based on humane considerations, profes- sional norms, and the experiences and informed judgment of the com- m~ttee. The contributions of individual health professionals to the bereaved depend on the organizational setting in which they work; the religious,
Roles of Health Professionals and Institutions / 217 psychosocial, and cultural characteristics of the bereaved; the individ- ual characteristics, interest, competence, accessibility, and availability of the professional; and the nature of his or her relationship with the bereaved. Although the exact nature of the assistance given following death varies, several professional tasks following bereavement can be identified: · information and education, with sensitivity to what people seem to want to know · emotional support · clinical recognition of abnormal bereavement reactions · management and appropriate referral to mental health resources · legitimization of the occurrence of dentin so that the her are - . . . ~ , ~ assured that all therapeutically appropriate measures were attempted. ROLES DURING THE DYING PERIOD More than SO percent of the deaths in the United States occur with at least several weeks' warning, 43 and in most cases health care ~rcife~ic~n _1 ~ 11 ~ 1 · ~ ~ ~ __. ~ ~ ~ alS Will nave oeen 1nvolvect.~ Whether death occurs at home or in an institution, there is a period during which health professionals have multiple opportunities to help the soon-to-be-bereaved.~3 29 Staff mem- bers' professional competence and the sincerity and consideration they show toward a patient and his or her family can help the bereaved cope with their grief when the patient dies.33 By ensuring that the patient and family are made as comfortable as possible during this generally diffi- cult time, staff members establish themselves as people who will help the survivors. Families usually turn to both physicians and nurses for information about tne illness and its management and for assurances that "every- thing has been done." Because of the many professionals actively in- volved in the care of gravely ill patients, relationships with any one health professional doctor, nurse, or social worker are often poorly defined. In the committee's view, it is important that there be one iden- tifiable health professional who the family knows is responsible for overseeing care and to whom they can turn for support and information. Even in the complex teams of health professionals that care for patients in some institutions, that person most often is a physician. The family should know that person's name, and the rest of the team should be aware of who has that central role. In addition, the primary care physi- cian who cared for the patient prior to admission to the hospital should remain informed about the patient's status and responsive to the fami- ly's need for reassurance and information. AL 1_ _ '11 ~ ·.
218 / Bereavement: Reactions, Consequences, and Care Although physicians usually direct patient care activities, in some settings {especially at home and in nursing homes) families may relate most closely and comfortably to a nurse. For this reason the primary nurse should be present when relatives are told that an illness seems to be in its final stage or when the nature of a medical or surgical problem is discussed. The nurse is then fully knowledgeable when the family later asks questions or if it becomes evident that they did not hear or understand the implications of what a physician said. Clear explana- tions of the cause of the death may prevent misconceptions and self- blame by the bereaved. Although an institution's responsibility to provide the family with in- formation on the patient's condition is clear, doing so has often proved difficult because the general public is so unfamiliar and health profes- sionals are so very familiar with hospital routines once the intricacies of medicine. People are often afraid to question a physician, fearing their confusion or uncertainty will be interpreted as lack of trust. Often, too, they may need help in identifying and formulating their questions. Although these problems are frequently cited in the literature, few de- tailed solutions have been proposed, suggesting that this is an area in need of much attention. One project that addresses this problem is the Surgical Nurse Coun- seling Program46 at the Memorial SIoan-Kettering Cancer Center in New York. Nurse-counselors visit patients the afternoon before surgery to find out what information each patient wants transmitted to rela- tives during the surgery. Providing a direct link to the operating room and the surgeons through their rounds of the operating rooms, the nurses carry progress reports to those in the waiting room. Since they are seen as sympathetic and supportive, the nurses also often become aware of misconceptions and fears that may distort a famiTy's under- standing of the illness and the surgery. By clarifying the situation and answering questions as they arise, they can help relatives understand what the physician has already told them. It is increasingly accepted that the care received by a dying patient should facilitate the resolution of relations between patients and those close to them. For this to occur, several goals must be pursued. The first is to allow a smooth and emotionally complete separation at the time of death. Communications between patients and those close to them should be facilitated so that both patient and family know, as much as possible and desirable, the diagnosis and when death is to be antici- pated. In the increasingly rare situations where, because of the patient, the family, or the circumstances, precise communication is not possi
Roles of Health Professionals and Institutions / 219 ble, the need for reconciliation or other emotional tasks can be con- veyed metaphorically. The physical setting also influences the opportunities to be close to the dying patient. Consequently, increased length and convenience of visiting hours, open access of family to the patient's bedside, and re- duced intrusiveness of medical procedures and hospital bureaucratic concerns can all increase the ability of the family to visit the patient. Although health professionals do not directly control many of these matters, they may have considerable influence in easing access to the patient. The vital fact that must be remembered is that the well-being of the family and others close to a dying person is part of health professionals' responsibility in terminal illness. Naturally, there are limits to that re- sponsibility, and problems arise when the needs of the family and those of the patient conflict. It is generally held that in such cases the primary responsibility of care-givers is to the patient. Here, as in other circum- stances, compromise and open discussion often allow conflicts to be re- solved. Physicians and nurses will help family members say goodbye in a smooth and fulfilling way when they understand that the family must be permitted to spend as much time as possible at a bedside and that saying goodbye is important for each person. Unfortunately, the needs of the family are sometimes viewed as ob- stacles to the essential activity of caring for a patient's disease. Al- though a family's needs may, on occasion, intrude in the care of a dying patient, physicians, nurses, and social workers must set new goals that include the well-being of the surviving family. Where the outcome is uncertain, as in high-risk myocardial infarction, conflicting responsibil- ities may be more difficult to resolve. When a realistic chance at mean- ingfuT survival exists, current attitudes give the patient's welfare high- est ultimate priority. In addition to facilitating a smooth separation from a dying patient, health care workers should, as much as possible, help relieve survivors of the guilt that often accompanies bereavement. Although the source of this guilt is unclear, its presence is ubiquitous. Nurses and physicians have the opportunity to lessen the reality-basis of survivors' guilt. The newly bereaved should leave a deathbed with the faith that they and the medical staff have done the right thing for the person who died. Health professionals should help diminish the occasions for survivors to blame themselves or the medical and hospital staff. To accomplish this, fam- ily members must be kept informed as care progresses and be permitted to take part in decision making whenever possible. They should under
220 / Bereavement: Reactions, Consequences, and Care stand the reasons for important medical actions and realize that the physicians and nurses care as much about the relief of suffering as they do. A family should not be overprotected with undue optimism or false hopes. Rather, to the degree possible, the family should be made aware of forthcoming risks and complications. Family rivalries often surface and intensify at the bedside of a dying parent. It is impossible for the hospital staff to resolve at the deathbed problems that may have occupied the family for years. It is feasible, however, to insist that everyone be notified, that every family member have a chance to visit and say goodbye, and that appropriate family members partake in, or have access to, the decision-making process when possible. Great diplomacy may be required in such situations. While facilitating separation and removing as many grounds for fu- ture guilt as possible, care-givers must take care not to overburden fam- ily members. Compared with obligations to a dying person, which may be perceived as boundless, family members may see their own needs as selfish. Health professionals should encourage families to place reason- able limits on what they expect of themselves and on the degree to which they are exposed to painful sights, smells, and sounds. Because people vary in their ability to tolerate the physical unpleasantness of dying, there can be no hard and fast rules. It is best to err on the side of protection, but to be as flexible as possible about the behavior of indi- vidual family members. The custom, followed in many hospice units, of giving visitors one day off a week is a wise one and might guide care- givers in their advice to the family. Parents whose child is dying may not wish to take a day off, but even in this case the aim should be to avoid a family member being so worn out in advance that the person has no reserves left to cope with the death itself. PRACTICES AROUND THE TIME OF DEATH Death occurs in many different ways and places, with varying conse- quences for those left to grieve. Patients die after long illnesses and many hospitalizations or after multiple problems develop with old age. Some die in the operating room, in the recovery room, or on the ward following surgery. The special care or intensive care unit, coronary care unit, and the emergency room are sites of maximal available technology for critical patient care, yet usually have minimal "technology" for emotional support. It is particularly important that relatives have the opportunity to be present at the actual time of death. They usually fee} that they ought to be there. If desired, family members should be able to spend some
Roles of Health Professionals and Institutions / 221 time privately in the room after the patient dies. If no relatives are present at the time of death, it is imperative that they be informed promptly by someone who cared for the patient j end who knows the family), and that the body not be moved to the morgue until after the family has had the opportunity to see the deceased. Guidance provided at the time of death may help prepare the bereaved for the often lengthy grieving process, for possible emotional reactions, and for physical symptoms they may experience in the subsequent months. Being forewarned may lessen anxiety if such reactions do oc- cur.24 38 In addition, lay offering the family the opportunity for a later appointment to discuss questions that might come to mind, health pro- fessionals make it clear that they are not indifferent to relatives' feel- ings, that they are available for support, and that they are sensitive to the fact that the shock of death may preclude people's ability to express all their questions and uncertainties immediately. Although health care institutions have been thought of as insuffi- ciently responsive to patients' and families' needs around death and be- reavement, administrative personnel are beginning to acknowledge their responsibility in these areas. To provide support for both family and staff, some hospitals and many hospices conduct periodic nonde- nominational memorial services to which both the family members and the hospital personnel who care for a patient are invited. Social workers are available in many hospitals and nursing homes to discuss legal, fi- nancial, or household problems and funeral arrangements with fami- lies. These services may facilitate the process of bereavement, espe- cially in the case of individuals who are, or who perceive themselves to be, socially isolated. Referral to a specialized support group after the death {discussed further in Chapter lOJ may also be welcomed by some. Studies indicate that recovery from bereavement may be enhanced when health professionals at a hospital encourage the use of informal and formal support available through family, friends, and the commu- nity.9 ~7 20 30 4~ The Special Problems of Sudden Death Although knowledge that someone close is going to die may not mea- surably lessen the impact of the final Toss, sudden deaths and deaths due to suicide, homicide, accident, or war can be especially shocking. If death is anticipated, relatives can be given factual information and can be prepared to some extent for the reactions likely to follow. If a patient dies suddenly, however, it is important to be alert to the needs of the stunned family on a more immediate basis, because it may be most dif
222 / Bereavement: Reactions, Consequences, and Care ficult at this time for the bereaved to collect their thoughts and ask questions. Hospitals are increasingly trying to provide support for parents whose infant dies soon after birth or with Sudden Infant Death Syndrome.4 35 36 The parental feelings of guilt and responsibility that inevitably follow may be countered, in part, by authoritative medical information. The literature also emphasizes the importance of permitting the parents, if they desire, to see or hold a stillborn infant or a baby who dies shortly after birth.9 ~7 20 40 There are two instances in which caution is required. With some cul- tural or religious groups, a baby who is born dead or who does not live for at least a few days is not officially accepted into the faith. Individuals in these groups may not want to see the baby. In cases of babies born with devastating congenital malformations, such as anencephaly or cy- clops abnormality, parents should not be forced to see the infant. In these situations, no clear-cut advice is possible, but parents' desires can be elicited by careful discussion. Talking with the hospital staff who cared for the baby before death is particularly important in confirming for parents that their baby really did exist, especially when other family members or friends may suggest that it would be better for everyone if the pregnancy and birth were simply forgotten. Institutions can also structure the response to sudden death so that health care professionals do not become unduly stressed. A protocol used in the emergency room at the Children's Hospital National Medi- cal Center in Washington, D.C., serves to alleviate confusion and lessen the emotional distress of both the staff and family. Since it may be assumed that when a child is brought to an emergency room either dead or dying, the family in crisis cannot be expected to take care of itself, some members of the staff take responsibility for informing and supporting the parents while others attend to the child.8 The clear delin- eation of responsibilities for patient care, coordination, and parental support helps alleviate staff stress and confusion. Although many sudden deaths take place in institutions, many do not. In the case of natural disasters and accidents, for example, health care professionals and institutions may become involved, but often it is the police or criminal homicide detectives who make the initial contact with families of the deceased. In the case of war casualties families are notified by the military and typically have no contact with the health care system. The way families are notified and early efforts to support the family in its grief may have significant consequences for the subse- quent course of bereavement.6 Soldiers who survive but have witnessed others' deaths in combat may need support not only from individuals
Roles of Health Professionals and Institutions / 223 but from the broader community in order to be reassured of the value of the combat. This has been an especially thorIly public and personal is- sue for veterans of the Vietnam war.7 The role of community-oriented health professionals in stimulating "the development of . . . natural supportive links among members of a population exposed to acute or Tong-term stress" is described by Cap- lan6 in the aftermath of the Yom Kippur war in Israel and lay Raphael97 following a major train wreck in Australia. Raphael27 describes a psychiatric intervention that was implemented in Sydney, Australia, after a bridge collapsed and crushed several rail- road cars. As rescue workers were mobilized and hospitals prepared to accept the wounded, the Disaster Committee of the Australian and New Zealand College of Psychiatrists formed a team to facilitate be- reavement counseling. Some members went to the city morgue to assist families in identifying the bodies, many of which were grossly disfig- ured. Attempts were made to learn what social support was available to each family, provide for further contact with and referral to local sup- port groups, and arrange for material aid. Other members of the team established communication between the hospitals and persons who knew or feared that a family member had been in the accident. Rescue work lasted two days, but follow-up psychiatric support and referral services continued for several months. Although these services were designed primarily to aid family and friends through the emotional and practical stresses of bereavement, the impact on the rescue workers at the site, the hospital staff, and the psychiatric support teams was ac- knowledged at a debriefing meeting held to share the stress of the long hours, the large numbers of people dealt with, the intense level of com- mitment, and the unusually large number of dead and mutilated bodies. Autopsy Requests Probably the most controversial and sensitive post~eath issue for health care institutions is the request for autopsy. The task tradition- ally has been assigned to the house officers with the expectation that they should make a great effort to obtain as many autopsies as possible. Perhaps as a result of the recognition that consideration for the feelings of the grieving family is crucial, an increased sensitivity in discussing this issue with families has developed. It is uniformly recommended that the responsible attending physician should make the request, un- less the resident has developed an especially close and supportive rela- tionship with the family.
224 / Bereavement: Reactions, Consequences, and Care When a patient dies in a hospital, the autopsy cost is covered under the third-party agreement that covers hospital costs. No such insurance is available for out-of-hospital deaths, however; thus, the family will usually have to pay the cost of an autopsy that they were unenthusiastic about in the first place. This situation probably will lead to even fewer autopsies than at present. The many studies that document the anxiety experienced by doctors when they request autopsies underline the need to help young physi- cians deal with their own complex feelings about this procedure.3 ~4 ~6 Although a family's reservations about giving permission must be ac- knowledged and respected, the positive aspects of an autopsy both for the family and for the advancement of medical science should be noted. For some relatives, knowledge of the precise cause or causes of death appears to help them accept the Toss and assuage guilt feelings that might arise. In the case of neonatal deaths, autopsies may offer the pos- sibility of identifying genetic or hereditary factors that could be impor- tant if another pregnancy occurs. Requests for organ donations may also be made at this time, and, like autopsies, may serve to make families feel better. Knowing that the or- gans of the deceased may preserve the vision or the life of others has the potential of giving some meaning to a death. If permission for an autopsy is Granted it is important to follow through with the family when results become available, to discuss find- ~ngs and answer any questions they might have.3 ~6 28 This expectation of toilow-up suggests that the institution has a responsibility to main- lain contact with the bereaved for some time; it may also explain why physicians seek to avoid making an autopsy request, with the accompa- nying necessity of reviewing and remembering what they may have ex- perienced as a "failure" on their part. CONTINUING RESPONSIBILITIES OF HEALTH PROFESSIONALS AND INSTITUTIONS Although medical institutions are not commonly expected to have a continuing responsibility to family members once a patient has died, the fact that there may be no one else to fulfill that function has prompted a range of experiments with institutional bereavement pro- grams. The committee believes that health care professionals should not withdraw from this process but rather should remain involved. Be- cause of their familiarity with death and dying, their experience with each particular dying patient, and their opportunity for a special close- ness with the family, the hospital staff is in a unique position to allevi
Roles of Health Professionals and Institutions / 225 ate, to some extent, the social isolation and personal distress the be- reaved may experience.8 ~7 30 4i Practical support or counseling provided after a death should be re- sponsive to the expressed concerns and needs of the bereaved. It is im- portant to avoid inappropriate remarks such as "He's better off this way," or "If we had seen him sooner, we could have saved him." When the bereaved find themselves experiencing the death and its af- tereffects differently from what they had expected or think is normal they may become isolated from their friends and remaining family and fee] threatened. Social workers, nurses, and physicians can be a power- fuT force in resolving some of the difficulties that may arise when survi- vors' experiences cannot be explained by culturally acceptable catego- ries of reality. Based on their clinical experience care-givers can assess experiences, provide appropriate assurance that reactions are within normal bounds, or detect those that are truly abnormal. Staff members pursuing research in relation to the deceased or the be- reaved can also be helpful to families, both through the relationship that develops and, perhaps, by pointing out that the deceased and the survi- vors who participate in the research are able to make a contribution to scientific knowledge. Research, therefore, may have psychologic as well as scientific functions. Although interactions between a family and health professionals are likely to decrease in intensity or to end shortly after bereavement, each group of health professionals has special skills to offer in caring for the bereaved. Current nursing education provides a solid conceptual groundwork of knowledge about bereavement, grief, and mourning. Nurses are trained to use this knowledge in support of the bereaved in a preventive and health-promoting manner, as well as to assist them in the process of grieving for their losses and in achieving the most constructive resolu- tion possible. They often are able to make and promote appropriate re- ferrals or suggest other interventions. The social work role is to maintain and enhance family solidarity at a time of crisis. Social workers regularly encourage communication among the family members most directly involved, refer people for ser- vices, and provide indirect service by fostering the establishment of sup- port groups. The social worker may provide valuable help in locating relatives, making burial plans, notifying next of kin, and referring the bereaved to public welfare, visiting nurse, homemaker service, and other community agencies. In addition, specially trained social workers are often available for counseling and psychotherapy to help the be- reaved restore personal and family equilibrium when appropriate; this function may also be performed by psychologists and psychiatrists.
226 / Bereavement: Reactions, Consequences, and Care After the death of a patient and the return of the family to their homes, the physician's role frequently ends with the performance of some bureaucratic procedure such as filling out the death certificate and writing a condolence letter. That is the usual scenario, particularly for institutionally based care-givers. If the family members have also been patients of the physician who cared for the patient during the terminal illness, it may not be uncommon for one or more of them to call or visit the doctor after the death. They may want to go over details of the ill- ness, just as they did prior to the death, to make sure that they behaved correctly or perhaps to discuss something they think they should have done differently or about which they fee] guilty. It is usual and neces- sary that the bereaved tell their story. It has been pointed out that the physician may not be the best person to tell this story to because he or she was directIv involved. knows , , , , ~ . . ~ ~ . . . . . _ many of the details, and may also be grieving.21 This difficulty can be overcome if the physician listens patiently and does not interrupt ex- cept for comments or questions designed to keep the person talking. Time constraints have also tended to limit many practitioners' pa- tience for such interactions. Furthermore. physicians customarily di- rec~c their interviews __ _ ~ ~ __ ~ ~ _. a. Since they are unaccustomed to more unstruc- tured discussion, they may need to be specially trained to carry out such discussions comfortably and effectively. And finally, receptive listening may be difficult if the doctor feels defensive or guilty about the death. ia It may have taken more days than it should to get the patient admitted to the hospital; there may have been delays in the start of treatment or diagnostic studies; medication errors may have occurred; there may have been pain or other symptoms inadequately relieved; and all of these problems may be ascribed to the physicians by themselves, if not by others. The physician has also suffered a Toss and has the need to tell someone. Thus, for the physician to listen to the family member's reci- tation without interjecting comments is not a simple matter. It takes training and discipline. Physicians occasionally are certain that the family blames them for the death, although they have no concrete evi- dence beyond their own feelings of guilt. In such circumstances, it takes an effort of will to reach out to the family through telephone calls or letters. The committee believes, nevertheless, that such continued contacts and telephone calls are important. They provide a concrete demonstra- tion of concern, present further opportunities for families to raise ques- tions, and enable a quick assessment of how the survivors are coping. Such calls may give the health professional hints of difficulties in the bereavement process or the presence of gross dysfunction. Such suspi
Roles of Health Professionals and Institutions / 227 clone should be followed up by inviting the bereaved person to come in and discuss matters related to the bereavement. Except under special circumstances, referral to mental health practitioners or facilities should not be made by telephone or solely on the basis of a telephone call unless the referral is requested by the bereaved person. Part of the continuing responsibilities of health professionals stems from recent changes in the delivery of health care. Very ill patients are increasingly being transferred to regional facilities for care. When such a patient dies, the family is often left to return home to a community that does not know what happened. It has been suggested47 and is considered important by the committee that under such circumstances the physi- cians who cared for the patient in the tertiary hospital should notify the doctor in the patient's home community about the death, including de- tails of final treatment and the nature of the death. It should be remem- bered that most patients had a-primary care physician who remains re- sponsible to the survivors for their health and perhaps, in their eyes, for what happened to the patient who died. This is because the primary care physician will often have been responsible for the initial diagnosis and for making arrangements for transfer to the tertiary facility. The essen- tial point is that medical care and responsibility do not cease with the death of the patient; their focus shifts to the survivors. In some communities, it will be appropriate to notify the public health nursing agency or visiting nurse association so that follow-up care of the bereaved can be initiated. Social workers at the tertiary care Institution are usually able to provide referral to social agencies in the home community when that is necessary. Often the most effective way of assuring the continued care of the family is to ask them whom they wish contacted. Primary care physicians Internists, family practitioners, pediatri- cians, and obstetricians/gynecologistsJ who did not take care of the de- ceased nonetheless play an important role for the bereaved who are their regular patients. Responsible history-taking by these practitioners should routinely include questions about recent major life changes, in- cluding bereavement. Such questions validate patients' feelings and will help to elicit their perceptions about their own or other family members' adjustment, concerns, and questions. The discussion pro- vides an opportunity to educate the survivors about the nature of the bereavement process and to monitor their progress. Effective monitor- ing requires that physicians understand normal and abnormal bereave- ment responses and be able to make appropriate referrals as needed.37 As discussed in earlier chapters, although there is substantial individ- ual and cultural variation in response to bereavement, there are a num
228 / Bereavement: Reactions, Consequences, and Care ber of red flags that should signal primary care physicians and commu- nity-based nurses that a bereaved individual is having enough difficulty to warrant intervention by a mental health professional. When a pattern of increased illness in a previously well person is noted, even with no other evidence of a failure to return to full engagement in living, there may be a problem related to the process of bereavement. Increased smoking, excessive alcohol consumption, and difficulty maintaining social relationships are all possible signals of unhealthy bereavement reactions. As discussed in Chapter 8, some ethnic groups appear to be more likely than others to somatize. However, persistent somatic com- plaints and enduring depressive symptoms usually signal a need for help. In bereaved children, the need for help may be expressed through repeated aggressive or hostile behavior, a drop in school performance, continued regressive behavior, and somatic complaints. When a physician or other care-giver attends a patient whose terminal illness has been long, complex, or unusually dramatic, the relationship with the family may become particularly intense. The doctor, seen in the hospital regularly or visiting or calling the home frequently, be- comes a temporary family member. For the about-to-be-bereaved, the physician may be seen as a particularly strong and emotionally giving individual at a time when the family members' emotions are in turmoil and they are more aware of their own weaknesses than of their strengths. Following the death, if the doctor merely "walks out," an- other Toss has been sustained. To remain close to the family, however, may require walking an emotional tightrope, a situation for which phy- sicians are rarely trained. One helpful step that health care professionals can take is to make sure the bereaved know, without question, that the professional is available for advice and help should they ever need it and that the na- ture of the "need" is a personal matter that differs from individual to individual. As discussed in Chapter 3, some people may have delayed grief reactions and only feel the need for assistance many months after the Toss. Whenever these reactions occur, the bereaved should not feel it necessary to have physical symptoms in order to call or visit. Inherent in most reimbursement schemes is a strong disincentive to the kind of follow-up activities described here as being desirable. Once a patient has died, there usually is no third-party mechanism to pay for members of the person's family to consult with a health professional. Thus, in addition to the discomfort many health professionals fee! in talking with the bereaved, there is the added discomfort of having to charge for this service, knowing that the cost will have to be borne out
Roles of Health Professionals and Institutions / 229 of pocket. The only alternative physicians have is to donate their time, a practice that may be constrained in some institutional settings. One mode] that has been adopted by facilities serving many termi- nally ill patients is to fold the costs of such follow-up services into insti- tutional overhead or daily bed-rate charges. This practice includes rec- ognition that such services are considered a routine part of adequate pa- tient care. ENHANCING THE WORK OF HEALTH PROFESSIONALS There are two broad areas in which more changes are needed to en- hance and encourage the work of health professionals with the be- reaved: the support that institutions give for such work and the educa- tion and training that health professionals receive. Institutiona] Support Health care institutions are increasingly recognizing that they cannot expect to provide adequate emotional support for the patient, much less for the family, unless the issues of staff stress, including personal reac- tions to death and bereavement and the inevitable problems of staff rela- tionships, are acknowledged and allowances made for them in the ad- ministration's expectations. Working with dying patients and those who grieve for them presents a challenge that requires special training, adequate support systems, and a considerable amount of professional and personal maturity.3234 48 As Raphael's study27 suggests, any initia- tive on the part of an institution to take more responsibility in aiding the bereaved must begin with an acknowledgment of the effects of death and dying on its own staff. The choice of staff and volunteers is particularly important in high- stress areas such as emergency rooms, intensive care units, and hos- rices. Problems for patients, family members, and personnel them- seives have been observed when care-givers are psychologically unstable, uncomfortable with issues of death and grief, and unable to recognize their own limits and make referrals when their competencies are exceed. 39 These issues are discussed in Chapter 10 in relation to the screening and selection of lay volunteers to work in hospice bereave- ment intervention programs. Although clinicians need to recognize the boundaries of their toler- ance for working with dying patients and the bereaved, stress can esca- late quickly in critical care environments. Some mechanism for contin , . .
230 / Bereavement: Reactions, Consequences, and Care ually monitoring the staff's emotional response to their work should be in effect.5 i9 45 Signs of potential difficulty include an "l can't empathize any more" attitude, or over-involvement as evidenced by a "nobody can do it but me" attitude. Unusual irritability, insomnia, anorexia, overeating, temper tantrums, argumentativeness, suspiciousness, and over-attachment or hostility to a patient or family are other signs of trouble. Personal stresses such as Toss, illness, or serious family con- flicts, when added to work-related stress, can cause emotional fatigue. Monitoring staff for evidence of fatigue and suggesting time off, a vaca- tion, or a temporary pullback may avoid major problems. Apart from drug and alcohol abuse and overt mental illness, which clearly require immediate intervention, most of the problems that arise respond well to staff discussions and sharing. Regular meetings of those who work in highly stressful units should be held to discuss cases, prob- lems, and issues. Even with experienced staff, group meetings have edu- cational value. People can be reminded, for example, that " just listen- ing" to a patient or colleague is an active, professional activity that may help that individual identify and deal with personal feelings or disturb- ing misunderstandings. Perhaps the most frequent problem to surface in staff meetings is the unrealistic level of self-expectation common among highly skilled indi- vi~ua~s.39~44 The inevitable failure to live up to these self-imposed ex- pectations often leads professionals to withdraw so that their colleagues will not observe their "failures." This withdrawal results in isolation and severely limits staff members' ability to respond adequately to their patients. Seeing the hostile or demanding behavior of the relative of a patient as part of the bereavement process rather than as a personal at- tack may relieve the professional of the sense of failure and isolation. The use of multidisciplinary teams with clear role definition and coor- dinated, shared responsibilities may also reduce individual isolation and thus lessen staff stress. It is often reassuring in group sessions to hear that colleagues have similar feelings of inadequacy. Indeed, Beszterczey,s in reporting his ex- perience as a psychiatrist responsible for both patient and staff care on a palliative care unit, suggests that changing expectations to gain a more appropriate view of the situation demonstrates a successful adjustment to highly stressful patient-care responsibilities. He notes that this may produce an increase ~ self-confidence that frees professional staff to ex- perience the satisfaction of being able to attend to "the nuances of psy- chological support." A sense of esprit in the group also helps each mem- ber faced with a trying situation. Staff effectiveness and comfort may
Roles of Health Professionals and Institutions / 231 also be enhanced by the liaison psychiatry consultation service to help with specific cases or with staff feelings. By encouraging and structuring support for its staff, an institution demonstrates that it is aware of and concerned about the stress inherent in working with dying patients and then families. Coordinated staff ac- tivities with clear role responsibilities, regular meetings to discuss problems and staff reactions to them, and adequate back-up from liaison psychiatry are all ways to build a supportive atmosphere for staff. Education of Health Professionals Recognizing that the ability to care for grieving people depends heav- ily on such personal factors as conscious and unconscious reactions, personality structure, family experiences, and styles of coping, the com- mittee also believes that this capacity can be enhanced through profes- sional education. In the same way that information helps the bereaved to understand what is happening and what to expect, concrete knowI- edge about bereavement assists health care providers.222 Similarly, health professionals who have an opportunity to explore their own feel- ings regarding death prior to having to help others cope with it are more likely to provide effective and compassionate care. ~ 45 Thus, health pro- fessionals should be prepared to deal with the realities of their role in bereavement through training that gives them both the necessary knowledge base and the clinical skills, adapted to the personal charac- teristics of both the clinician and the bereaved. These can be taught. Relatively little time in the training of physicians is devoted to the affective aspects of the physician-patient relationship or to the personal reactions of medical students and residents to illness, death, and be- reavement. Knowledge of how the individual clinician deals with anxi- ety, depression, grief, anger, guilt, and frustration should be a part of each practitioner's educational experience. Such awareness facilitates that physician's ability to provide effective and compassionate care. The attention paid to death and dying as part of life cycle education in family practice residency programs is to be commended as a step in the right direction. Current social work education stresses topics relevant to these con- cerns. A social worker in the health field ordinarily prepares in the clini- cal track that emphasizes interpersonal skills in individual and group interviewing and with the goal of restoring, enhancing, or maintaining social functioning.25 Social work curricula always include course work on dying and death using content about the physical, emotional, and
232 / Bereavement: Reactions, Consequences, and Care social problems faced at various points in the life cycle. Schools of nurs- ing as well as graduate nursing programs emphasize many of the con- cepts and skills that are necessary in settings of illness and death. The concepts of Toss, grief, crisis, dying, death, and bereavement are basic to nursing curricula. So, too, are the acquisition of communication and interpersonal skills required to apply that knowledge. This training should prepare the nurse, whether hospital- or community-based, to participate in the follow-up and care of the bereaved. The values inherent in the acute-care, crisis intervention mode] of care most often found in hospitals may provide a disincentive for even the best-trained health professional to exercise those skills that are most appropriate to meet the needs of the bereaved. Because of this, health and social service professionals including physicians, social workers, nurses, psychologists, and clergy may need additional training to acquire the specific knowledge and skills necessary to work with the bereaved.3i In summary, the education of health care professionals should specifi- cally enhance the development of skills in an effort to attain the follow- ing goals: · Attentive listening. This skill offers substantial support because it provides the bereaved an opportunity to grasp what is happening and express those concerns that may trouble or threaten to overwhelm them. · Continuing relation strip with the bereaved. By having a profes- sional with whom they can form a close alliance, families may be helped to realize their potential for coping with this universal human experience. · Empathy with the bereaved. Even though the bereaved's concerns and questions may not be specifically medical, they can often best be dealt with by health professionals. · Personal coping strategies. Health professionals must be prepared to deal with the discomfort precipitated by upsetting events in the lives of their patients. · Observational skills. The health professional should be alert to be- havioral as well as physical clues to grief reactions that interfere with the bereaved person's return to full function. · Appropriate referrals. The health professional should be prepared to make appropriate referrals to a mental health resource. This requires knowledge about community resources to which the bereaved can be referred and an appreciation of the particular skills of other health pro- viders. Such supportive professional linkages which recognize and
Roles of Health Professionals and Institutions / 233 value the contribution of other health professionals reduce feelings of total responsibility for the bereaved and permit appropriate professional involvement. CONCLUSIONS AND RECOMMENDATIONS The wellbeing of the family and those close to a dying or recently deceased person is part of the health professionals' responsibility. The committee believes that health care providers and institutions are pro- fessionally and morally obligated to assist the bereaved by offering sup- port and information and by being sensitive to and knowledgeable about grief's impact. The outcome of specific practices in lessening distress or preventing pathologic grief should be studied. Currently, such practices are based largely on what seems most humane and compassionate. To aid this support process, health professionals need training that provides them with an appropriate knowledge base and specific clinical skills. In the committee's view, it is important that these specific skills rest on the broad and solid foundations that health and mental health education and preparation for the ministry provide in order to have the proper context for understanding the impact of bereavement. Thus, the committee cannot endorse the development or certification of a new profession for "grief counseling" that is separate from existing health and social services. The primary tasks for health professionals in the care of the bereaved include providing information and explanations about the medical fac- tors that caused the death as well as legitimization of it by assuring the bereaved that everything therapeutically reasonable was attempted. The symptoms and signs that may be associated with bereavement should be anticipated, including the lengthy nature of the grieving pro- cess and the likelihood of differences in the ways grief is expressed in various ethnic groups and even by members of the same family. Primary health professionals should monitor the process of bereave- ment. Visits to physicians for either illness care or health supervision provide an obvious opportunity to inquire about major life events, such as the death of a close relative or friend, during the past year or two and about the patient's adaptation to such events. Physicians, nurses, and social workers must be alert to the "red flags" for children and adults discussed in this report that signal the need for mental health interven- t~on. Clinicians should recognize the boundaries of their own professional competency and personal tolerance for the care of bereaved individuals. By helping to mobilize the bereaved person's support network of family,
234 / Bereavement: Reactions, Consequences, and Care friends, and community and by being knowledgeable about mental health resources available to assist those whose grief is extreme, health professionals may responsibly limit their own involvement. Health care institutions have an obligation to provide for the comfort of the family of seriously ill patients and to limit avoidable stress. Rela- tives should be permitted to be close to and spend as much time as is reasonable with a dying patient, including the chance to be present at the time of death. If they are not ~resent. it is imnern~i`7e Ahoy ~h~7 he informed promptly of the death _ ~. . . ,: , ~, ~ ~ The hospital's responsibility to aid the bereaved includes an acknowI- edgment of the stressful effects of death and dying on hospital staff and of the impact management and organizational practices can have on staff functioning in such settings. Avoidable bureaucratic stress needs to be minimized and the staff's emotional response to their work moni- tored, especially in settings where deaths are likely to be sudden or fre- quent. REFERENCES 2. 3. Artiss, K.L., and Levine, A.S. Doctor-patient relation in severe illness. New En- glandiournalofMedicine288:1210-1213, 1973. Barton, D., and Crowder, M. The use of role playing techniques as an instructional aid in teaching about death, dying end bereavement. Omega 6:243-250, 1975. Bergen, L.R. Requesting the autopsy: a pediatric perspective. Clinical Pediatrics 17:445-452, 1978. 4. Bergman, A.B. Psychological aspects of sudden unexpected death in infants and children. Pediatric Clinics of North America 21:115-121, 1974. 5. Beszterczey, A. Staff stress on a newly developed palliative care service: the osvchi atrist's role. Canadian Psychiatric Association Journal 22:347-353, 1977. 6. Caplan, G. Organization of support systems for civilian populations. In: Support Systems and Mutual Help {Caplan, G., and Killilea, M., easy. New York: Grune and Stratton, 1976. 7. Card, T. Lives After Vietnam: The Personal Impact of Mili~n~v ~S~rvir~ T.~vin~on ~_ ~_ ~· ~ Mass.: Lexington Books, 1983. 8. Cohen, G. D. O.A. Preliminary report on an emergency room protocol. Clinical Pro- ceedings 35: 159- 165, 1979. 9. Cohen, L., Zilkha, S., Middleton, T., and O'Donohue, N. Perinatal mortality: as- sisting parental affirmation A Marion ~ rnn 7 ~ f (1rt hen corm h intro, 21~ - 7~) 7_7 ~2 1978. _ _ ~ ~, ~ ~ ~ -,, ~ v ~ an ~ ~ " ^ .r ~ v . ~ ~ ~ v ~ J 10. Editorial. Honesty after death. British Medical Journal 287:1906, 1984. 11. Engel, G.L. Grief and grieving. American Journal of Nursing 64:93-98, 1964. 12. Frader, J.E. Difficulties in providing intensive care. Pediatrics 64:10-16, 1979. 13. Friedman, S., Chodoff, P., Mason, I-, and Hamburg, D.A. Behavioral observations on parents anticipating the death of a child. Pediatrics 32:610-625, 1963. 14. Gardner, R., Peskin, L., and Katz, J. The physician, the autopsy request and the consent rate. Journal of Medical Education 48:636-644, 1973. 15. Glaser, B., and Strauss, A. Awareness of Dying. Chicago: Aldine Publishing, 1968.
Roles of Health Professionals and Institutions / 235 16. Katz, T., and Gardner, R. The intern's dilemma: the request for autopsy consent. Psychiatry in Medicine 3: 197-203, 1972. 17. Keller, K., Best, E., Chesborough, S., Donnelly, W., and Green, W. Perinatal mor- tality counseling program for families who experience stillbirth. Death Education 5:29-35, 1981. 18. Koocher, G.P. Adjustment and coping strategies among the caretakers of cancer pa- tients. Social Workin Health Care 5:145-150, 1979. 19. Kopel, R. Death on every weekend. Suicide and Life Threatening Behavior 7:110- 119, 1977. 20. Krein, N. Sudden infant death syndrome: acute loss and grief reactions. Clinical Pediatrics 18:414-423, 1979. 21. Lattanzi, M., and Coffelt, D. Bereavement Care Manual. Boulder, Colo.: Boulder County Hospice, 1979. 22. Linn, M.W., Linn, G.S., and Stein, S. Impact on nursing home staff of training about death and dying. Tournal of the American Medical Association 250:2332- 2335, 1983. 23. Lohmann, R. Dying and the social responsibility of institutions. Social Casework 58:538-545, 1977. 24. Macon, L.B. Help for bereaved parents. Social Casework: The Journal of Contempo- rary Social Work 60:558-565, 1979. 25. Mullaney, T. and Fox, R. Clinical nurse specialist and social worker. In: Rehabilita- tion Services and the Social Work Role: Challenge for Change {Browne, T., Kirlin, B., and Watt, F., eds.~. Baltimore: Williams & Wilkins, 1981. 26. President's Commission for the Study of Ethical Problems in Medicine and Bio- medical and Behavioral Research. Deciding to Forego Life-Sustaining Treatment. Washington, D.C.: U.S. Govemment Printing Office, 1983. 31. 27. Raphael, B. A primary prevention action programme: psychiatric involvement fol- lowing major rail disaster. Omega 10:211-226, 1979. 28. Reynolds, R. Autopsies benefit to the family. American journal of Clinical Pathol- ogy 69:220-222, 1978. 29. Richmond, T., and Waisman, H. Psychological aspects of management of children with malignant diseases. American fournal of Diseases of Children 89:42-47, 195~. 30. Rogers, J., Sheldon, A., Barwick, C., Letorfsky, K, and Lancee, W. Help for families of suicide survivors support program. Canadian [ournal of Psychiatry 27:444-448, 1982. Roskin, M. Integrating primary prevention into social work practice. Social Work 25:192-197, 1980. 32. Rothenberg, M. Reactions of those who treat children with cancer. Pediatrics 40:507-510, 1967. 33. Sahler, O.~.A. {ed.J. The Child and Death. St. Louis: C.V. Mosby, 1978. 34. Schowalter, T. Death and the pediatric house officer. [ournal of Pediatrics 76:706- 710, 1970. 35. Schreiner, R.L. The death of a newborn. In: Ambulatory Pediatrics III {Green, M., and Haggerty, R.~., eds.~. Philadelphia: W.B. Saunders, 1984. 36. Schreiner, R.L., Gresham, E.L., and Green, M. Physician's responsibility to parents after death of an infant. American [ournal of Diseases of Children 133:723-726, 1979. 37. Secundy, M. Bereavement: the role of the family physician. [ouwal of the National Medical Association 67: 649-651, 1977.
236 / Bereavement: Reactions, Consequences, and Care 38. Silverman, P.R. Transitions and models of intervention. Annals of the Academy of Political and Social Science 464: 174- 188, 1982. 39. Spikes, T. Physicians' reactions to death. Continuing Education 10:54-64, 1979. 40. Stringham, T., Riley, I.H., and Ross. A. Silent birth: mourning a stillborn baby. So- cial Work 27:322-327, 1982. 41. Stubblefield, K. A preventive program for bereaved families. Social Work in Health Care 2:379-389, 1977. 42. Sudnow, D. Passing On. Englewood Cliffs, Hi.: Prentice Hall, 1967. 43. United States Department of Health, Education and Welfare. Facts of Life and Death. Washington, D.C.: U.S. Government Printing Office, 1978. 44. Vachon, M.L.S. On the suffering of caregivers in the care of the critically ill and dying. In: Death, Suffering and Well-Being {Levine, C., em. New York: Plenum, 1983. 45. Vachon, M.L.S., Lyall, W.A.L., and Freeman, S... Measurement and management of stress in health professionals working with advanced cancer patients. Death Edu- cation 1:365-37S, 1978. 46. Watson, S., and Hickey, P. A support system for families of surgical cancer pa- tients. American Journal of Nursing (in press), 1984. 47. Wessel, M.A. Primary care bereavement after tertiary care death. Paper presented at Palliative Care Conference on Bereavement: New Horizons, Philadelphia, Septem- ber 1983. 48. White, L. The self image of the physician and the care of dying patients. Annals of ache New York Academy of Sciences 164:822, 1969.
