Journal of Genetic Counseling, Vol. 3, No. 1, 1994
Genetic Counseling in Practice
Bearing Bad News: Dealing with the Mimics of Denial Mark S. Lubinsky 1,2
Denial is a common label for certain reactions to bad news. However, true denial is rare, and most cases actually represent a variety of responses with very different causes and needs. Three of these, disbelief, deferral, and dismissal, are characterized according to origins and needs. Failure to differentiate between these seemingly similar behaviors can result in inappropriate counseling, and interfere with attempts to convey information and provide support during a time of crisis. KEY WORDS: denial.
INTRODUCTION Although killing the messenger is no longer considered good form, bearing bad news is still a difficult task. With training mostly informal and resources scarce, practitioners often rely upon Kubler-Ross's "On Death and Dying" (1969) as a guide to patient reactions, using her stages for a variety of other situations besides impending death. Yet, while helpful, too facile an application can in fact interfere with attempts to convey information and to provide support. Such problems particularly attend uses of her stage of denial, actually a complex and heterogeneous set of adaptations. In psychiatry denial is a defense mechanism by which conscious recognition of information is blocked (Moore and Fine, 1968). One of KublerRoss's cases had typical manifestations: A woman with major liver disease 1Department of Pediatrics, Medical College of Wisconsin, Section of Genetics, Children's Hospital of Wisconsin, Milwaukee, Wisconsin. 2Correspondence Should be directed to Mark S. Lubinsky, Section of Genetics, Children's Hospital of Wisconsin, 9000 W. Wisconsin Avenue, Milwaukee, Wisconsin 53226.
1059-7700/94/0300-0005507.00/I © 1994 National Society of Genetic Counselors, Inc.
6
Lubinsky
whose "belief in her well being was unshakable" despite numerous episodes of illness (1969, p. 39). In my own experience, I recall a family with a child with hydranencephaly and severe delays. Any suggestion of a problem was met with shock, and a vehement denial that this had ever been mentioned, even if the subject had been broached only ten minutes before. Such responses are hard to deal with, but are generally rare. However, labels of denial are common--any problem in dealing with medical information is likely to be so named. Unfortunately, this designation is usually inappropriate, and often hinders the proper provision of care. This is not just a matter of degree, of different needs with milder, and therefore less refractory, forms of denial. Rather, a single term is being applied to superficially similar reactions actually as diverse in etiology and needs as bacterial and viral infections, and just as important to distinguish for treatment to succeed. Any reaction that affects acceptance can be confused with denial. However, I would suggest that three types, which I propose calling disbelief, deferral and dismissal, are especially common, and that they can be delineated as to origin, form, and responsive strategies (see Table I). As a clinical geneticist I see these primarily as parental responses to diagnoses of congenital disorders, and most of my examples reflect this. However, similar behaviors can occur in many other situations, and may even manifest as coping mechanisms for professionals!
DISBELIEF
For the first reaction, disbelief, the crucial differentiating factor was alluded to by Radovsky when he noted "no need to feel nervous when Table I. Characteristics of Denial and Some of Its Mimics Response
Reaction
Origin
Treatment
Denial
Repression
Defense
Complex; may need referral
Disbelief
Confusion
Dissonance
Concreteness, objectivity, acknowledgment
Deferral
Avoidance
Lack of physical or psychological resources
Pragmatism, patience, minimize barriers
Dismissal
Anger, denial of professional legitimacy
Feelings of entrapment and betrayal
Leave openings and space, look for possible middle grounds
Mimics of Denial
7
talking about cancer. People with symptoms are rarely surprised that they have it, or that it had returned" (Radovsky, 1987). Such symptoms are concrete evidence that something is wrong, warning of a problem and confirming medical concerns. But symptoms may be absent, and the signs clinicians rely upon obscure. A lack of findings meaningful to the patient causes disbelief, a failure to accept information simply because it doesn't make any apparent sense. Disbelieving patients register medical findings or concerns, but experience a dissonance between what they perceive and what they are told. Their reactions reflect their difficulties in resolving this conflict. Thus, most parents find a diagnosis of Down syndrome in their baby hard to believe. With a normal pregnancy and an infant appearing no different to them from any other, any discussion about abnormality founders on a reef of common sense: The child looks normal and is doing fine. How can there be a problem? Attempts to demonstrate the findings so obvious to us meet with puzzled looks, and more questions, more failures to "accept": Why worry about a single palmar crease? My aunt has a similar line--can't it be just a family trait? My first child had one ear over folded at birth----couldn't it be from how he lay in the womb? And so on. Our explanations are heard, but not understood. People are left trying to comprehend something outside of normal experience, something that goes against their common sense and everything their hearts want to believe. Parents instinctively support their children, and will quite naturally question diagnoses when medical concerns apparently focus on seemingly innocuous traits, or on some test that they had never heard of before. While true denial is difficult to manage, some basic approaches are easily applied to disbelief. Here, providing room while prioritizing needs is central. Acceptance will usually come with time, information, and experience. Rarely is it immediately necessary; people usually follow through medically even when uncertainties persist. Above all, this is a process, and not an end in itself. Achieved too early, acceptance can be devastating. I remember a woman with a severely handicapped child who unexpectedly found similar findings in her new baby. She understood at once what they meant, both then and for the future, without preparation, hope, or solace, and I have seldom seen so desolate a grief. Insisting on acceptance can be counterproductive in other ways; often the family sees this as "rubbing their noses" in their misfortune. People also resent being forced to surrender hope, even while recognizing that it may not be entirely realistic. They need time to say good-bye, to let go of one world and move on to another.
8
Lubinsky
Treating preliminary findings as clues rather than final answers can help provide a transition while uncertainties, both the patient's and ours, are acknowledged. If doubts are expressed, it is important not to raise false hopes, but with disbelief sharing questions with the family can be helpful if done in a realistic manner. When there are suspicions but no specific answers, time itself is a test, and presumptive bad news can be presented as "hope for the best but prepare for the worst." If confirmation follows, the interval helps soften the blow. Even when answers are more definite, this can be used to provide a cushion. Thus, no matter how clinically certain I am of the diagnosis of Down syndrome, there is still a small but definite chance that I am wrong. In a sense, the clinical assessment doesn't matter--a laboratory test and not my impression provides the answer. My role is to determine if there are enough findings to warrant a chromosome study. And, once the test is ordered, even the few days it takes to be completed gives the parents time to get over the acute shock before dealing directly with a confirmed diagnosis. This approach also helps put me on the family's side, and avoids arguments over whether I am right or wrong. After all, if a child has trisomy 21 simply on my say so, then it is logical for parents to try to convince me otherwise. On the other hand, if I am ordering a test to check for potentially important information, then I am an ally, and not a stranger imposing bad news, seemingly more interested in my diagnostic cleverness than in the family's feelings. This is not an abdication of medical judgment, but rather a shift of emphasis from a specific diagnosis to more general prognostic issues. Thus, for possible trisomy 21, questions typically center on minor anomalies that are not problems in themselves, even though they suggest an abnormal process that is indeed of concern. Potentially significant findings cannot be written off as long as uncertainties remain. This needs to be kept in focus, for even if chromosomes are normal, other studies may still be needed as new possibilities are considered. But even when questions persist, parental perceptions need to be recognized. Often, in insisting on the primacy of medical findings, we seem to deny the validity of the family's observations. This is easily interpreted as an attack on their judgement or intelligence. Yet even if minor anomalies are present, an appreciation of normal characteristics is still reasonable, and important to support at a time when it is all too easy for the family to lose faith in their abilities to understand and, by implication, to cope effectively. When definitive information is available, it should be made concrete. When positive, test results can provide final confirmation and closure to the investigatory process. Instead of just reporting a chromosome result, it helps to show parents the karyotype, often with a copy to take home and
Mimics of Denial
9
a normal study for comparison. This goes for any other specific test.~ when so much depends upon a result it should be made as real as possible. Actually, feelings of unreality are remarkably common, even though not always expressed. For example, it seems common for women with stillbirths to appreciate some physical connection with the unborn child--holding it, or a picture to keep, or even a hospital footprint--to make their experience tangible, and they may have difficulties in coming to grips with their feelings otherwise. Similar needs may exist in less obvious situations; after the removal of a largely asymptomatic brain tumor, one of our patients insisted (interestingly, over the objections of the staff) on actually seeing the specimen. She found this tremendously helpful in authenticating her experience. Such direct encounters are not for everyone, but for many people they are invaluable. Making things real is often an important first step in dealing with what has happened, and in regaining some measure of control over their lives. Working through disbelief is also part of the more general process of acceptance that Kubler-Ross discusses. Strategies for dealing with specific reactions need to be adapted to individual cases. Since denial and disbelief need very different approaches, their differentiation is obviously important. Fortunately, this is usually not very difficult.
DEFERRAL Other reactions have origins and needs that differ also, and should be additionally considered. In the second type, deferral, findings are accepted while implications seem to be ignored. And again, despite a superficial similarity to denial, the dynamics are quite different. Deferral reflects the limits of what people feel they can deal with in terms of their physical and/or psychological resources. Here, acceptance involves implications that are hard to handle, and one solution is simply to put things off. Broken appointments when parents are just beginning to accept that their child might have a significant problem may be a symptom of deferral. If their suspicions are true, there will be major changes in their lives. Such changes, even when obviously necessary, are so intimidating that people understandably hesitate at facing the moment of truth. I suspect a similar reaction in many cases of "denial" of breast cancer. A women with a lump in her breast generally recognizes what it may mean. Fear, not only of possible consequences, but also of decisions to be made, effects on her life, and so on, are natural. Because confirmation has im-
Lubinsky
10
plications that are difficult even to imagine dealing with, further examination may be delayed, often with a variety of excuses, in the hope that this is all just a false alarm; rarely is there the suppression of awareness of the lump or its possibilities that typifies true denial. The major worry is, of course, that delay will only make problems worse, and it may not be medically possible to put off diagnosis and treatment. The most obvious solution is to help patients acquire or mobilize resources to cope, and to reduce any barriers to obtaining care. Sometimes just breaking down an apparently overwhelming task into a series of small steps may prove invaluable. Patients may have the necessary resources, but still need help in mobilizing them. This is often a matter of providing not only support, but also structure and guidance. Thus, with missed appointments, close work with the family may be necessary to insure compliance. Patients in deferral tend to be ambivalent about obtaining information, and if an excuse comes up, any excuse, they will grab at it like a life preserver. Repeated phone calls confirming appointment times, checking on or arranging transportation, staying late, and so on may be necessary. When the patients do arrive they must be treated gently, and acknowledging their fears can be a good way to start. Hopefully, there will be some pluses from their visit: Imagination is usually worse than reality, and things are often better than anticipated. And, even with negatives, there is a benefit in getting questions answered and in being able to plan for the future. Certainly any possibilities for intervention are important to emphasize at this time. Despite an apparent reluctance to proceed, these patients generally want to do what is necessary. With disbelief, forcing the issue is likely to be resented; however, with deferral it may actually be appreciated, especially when a relationship of trust has already been established. A word of caution, though: since deferral centers on practical issues, interventions must be perceived as useful. Otherwise, they become part of the problem instead of the solution as additional external demands that cannot be met. For example, insisting that someone struggling to support a family quit their job for health reasons may be far from practical advice. This can lead to yet another mimic of denials: Dismissal.
DISMISSAL Dismissal frees clients from apparent no-win situations by focusing not so much on information p e r se as on the legitimacy of its purveyors. For example, for physicians, when patients proclaim all doctors charlatans, inter-
Mimics of Denial
11
ested only in money and mutual protection, little room is left for discussion. Devaluing the competence of the practitioner provides a way to disregard recommendations as well as a rationale for leaving the clinical relationship. Typically, this is accompanied by anger; not Kubler-Ross's stage directed against the news itself (although this can certainly contribute to the intensity of the reaction), but rather an anger of frustration, and at a perceived betrayal of trust in the health professional as ally. This is often expressed in feelings of persecution by the system. This is also a particularly difficult reaction to deal with, since it involves an assault on our professionalism. When attempts to help are scorned and our integrity assailed, objectivity easily suffers, and dismissal often becomes mutual as we label the patient difficult. Obviously, this situation is best avoided, but medical necessity sometimes leaves little choice. Still, all-or-none approaches may drive the patient away, and partial or temporizing steps, even though less than satisfactory, may have to be accepted. If conflicts arise anyway, preserving connections is essential. Sometimes this can be done by emphasizing areas of care that the patient acknowledges as legitimate while differences are cautiously explored. Although it is difficult to hold back when health needs are pressing, a professional who remains neutral on medical issues can provide support and ultimately serve as a bridge back to the mainstream. And, as always, emphasizing patient autonomy and control can help restore an ability to trust.
CONCLUSION Ultimately, much that is labeled denial is normal and adaptive, and failure to appreciate such responses can be more of a problem than any intrinsic pathology. It is hardly surprising that unexpected information and abrupt changes are difficult to accept, or that sudden unforeseen events may seem unreal. Neither should it be remarkable that reactions are complex---even within a single family implications and perceptions differ, giving a variety of needs and responses. Unfortunately, an overly broad category of denial obscures these issues. Hopefully, better distinctions will mean better care in these stressful situations.
ACKNOWLEDGMENTS I thank Diane Baker, M.S., Kathy Beauchaine, M.S., Barbara Biesecker, M.S., Beth Conover, R.N., M.S., Beth Fine, M.S., Lois Magnuson,
12
Lubinsky
R.N., Susan Peters, R.N., M.S., Chris Sauer, M.S., and Luann Weik, M.S., for discussions, examples, and comments. REFERENCES Kubler-Ross E (1969) On Death and Dying, New York: Macmillan Co. Moore BE, Fine BD (eds.) (1968) A Glossary of Psychoana~tic Terms and Concepts, 2rid Ed., New York: The American Psychoanalytic Association, pp 30-31. Radovsky SS (1987) Bearing the News. NEJM 313: 586-588.
Genetic Counseling in Practice
Bearing Bad News: Dealing with the Mimics of Denial Mark S. Lubinsky 1,2
Denial is a common label for certain reactions to bad news. However, true denial is rare, and most cases actually represent a variety of responses with very different causes and needs. Three of these, disbelief, deferral, and dismissal, are characterized according to origins and needs. Failure to differentiate between these seemingly similar behaviors can result in inappropriate counseling, and interfere with attempts to convey information and provide support during a time of crisis. KEY WORDS: denial.
INTRODUCTION Although killing the messenger is no longer considered good form, bearing bad news is still a difficult task. With training mostly informal and resources scarce, practitioners often rely upon Kubler-Ross's "On Death and Dying" (1969) as a guide to patient reactions, using her stages for a variety of other situations besides impending death. Yet, while helpful, too facile an application can in fact interfere with attempts to convey information and to provide support. Such problems particularly attend uses of her stage of denial, actually a complex and heterogeneous set of adaptations. In psychiatry denial is a defense mechanism by which conscious recognition of information is blocked (Moore and Fine, 1968). One of KublerRoss's cases had typical manifestations: A woman with major liver disease 1Department of Pediatrics, Medical College of Wisconsin, Section of Genetics, Children's Hospital of Wisconsin, Milwaukee, Wisconsin. 2Correspondence Should be directed to Mark S. Lubinsky, Section of Genetics, Children's Hospital of Wisconsin, 9000 W. Wisconsin Avenue, Milwaukee, Wisconsin 53226.
1059-7700/94/0300-0005507.00/I © 1994 National Society of Genetic Counselors, Inc.
6
Lubinsky
whose "belief in her well being was unshakable" despite numerous episodes of illness (1969, p. 39). In my own experience, I recall a family with a child with hydranencephaly and severe delays. Any suggestion of a problem was met with shock, and a vehement denial that this had ever been mentioned, even if the subject had been broached only ten minutes before. Such responses are hard to deal with, but are generally rare. However, labels of denial are common--any problem in dealing with medical information is likely to be so named. Unfortunately, this designation is usually inappropriate, and often hinders the proper provision of care. This is not just a matter of degree, of different needs with milder, and therefore less refractory, forms of denial. Rather, a single term is being applied to superficially similar reactions actually as diverse in etiology and needs as bacterial and viral infections, and just as important to distinguish for treatment to succeed. Any reaction that affects acceptance can be confused with denial. However, I would suggest that three types, which I propose calling disbelief, deferral and dismissal, are especially common, and that they can be delineated as to origin, form, and responsive strategies (see Table I). As a clinical geneticist I see these primarily as parental responses to diagnoses of congenital disorders, and most of my examples reflect this. However, similar behaviors can occur in many other situations, and may even manifest as coping mechanisms for professionals!
DISBELIEF
For the first reaction, disbelief, the crucial differentiating factor was alluded to by Radovsky when he noted "no need to feel nervous when Table I. Characteristics of Denial and Some of Its Mimics Response
Reaction
Origin
Treatment
Denial
Repression
Defense
Complex; may need referral
Disbelief
Confusion
Dissonance
Concreteness, objectivity, acknowledgment
Deferral
Avoidance
Lack of physical or psychological resources
Pragmatism, patience, minimize barriers
Dismissal
Anger, denial of professional legitimacy
Feelings of entrapment and betrayal
Leave openings and space, look for possible middle grounds
Mimics of Denial
7
talking about cancer. People with symptoms are rarely surprised that they have it, or that it had returned" (Radovsky, 1987). Such symptoms are concrete evidence that something is wrong, warning of a problem and confirming medical concerns. But symptoms may be absent, and the signs clinicians rely upon obscure. A lack of findings meaningful to the patient causes disbelief, a failure to accept information simply because it doesn't make any apparent sense. Disbelieving patients register medical findings or concerns, but experience a dissonance between what they perceive and what they are told. Their reactions reflect their difficulties in resolving this conflict. Thus, most parents find a diagnosis of Down syndrome in their baby hard to believe. With a normal pregnancy and an infant appearing no different to them from any other, any discussion about abnormality founders on a reef of common sense: The child looks normal and is doing fine. How can there be a problem? Attempts to demonstrate the findings so obvious to us meet with puzzled looks, and more questions, more failures to "accept": Why worry about a single palmar crease? My aunt has a similar line--can't it be just a family trait? My first child had one ear over folded at birth----couldn't it be from how he lay in the womb? And so on. Our explanations are heard, but not understood. People are left trying to comprehend something outside of normal experience, something that goes against their common sense and everything their hearts want to believe. Parents instinctively support their children, and will quite naturally question diagnoses when medical concerns apparently focus on seemingly innocuous traits, or on some test that they had never heard of before. While true denial is difficult to manage, some basic approaches are easily applied to disbelief. Here, providing room while prioritizing needs is central. Acceptance will usually come with time, information, and experience. Rarely is it immediately necessary; people usually follow through medically even when uncertainties persist. Above all, this is a process, and not an end in itself. Achieved too early, acceptance can be devastating. I remember a woman with a severely handicapped child who unexpectedly found similar findings in her new baby. She understood at once what they meant, both then and for the future, without preparation, hope, or solace, and I have seldom seen so desolate a grief. Insisting on acceptance can be counterproductive in other ways; often the family sees this as "rubbing their noses" in their misfortune. People also resent being forced to surrender hope, even while recognizing that it may not be entirely realistic. They need time to say good-bye, to let go of one world and move on to another.
8
Lubinsky
Treating preliminary findings as clues rather than final answers can help provide a transition while uncertainties, both the patient's and ours, are acknowledged. If doubts are expressed, it is important not to raise false hopes, but with disbelief sharing questions with the family can be helpful if done in a realistic manner. When there are suspicions but no specific answers, time itself is a test, and presumptive bad news can be presented as "hope for the best but prepare for the worst." If confirmation follows, the interval helps soften the blow. Even when answers are more definite, this can be used to provide a cushion. Thus, no matter how clinically certain I am of the diagnosis of Down syndrome, there is still a small but definite chance that I am wrong. In a sense, the clinical assessment doesn't matter--a laboratory test and not my impression provides the answer. My role is to determine if there are enough findings to warrant a chromosome study. And, once the test is ordered, even the few days it takes to be completed gives the parents time to get over the acute shock before dealing directly with a confirmed diagnosis. This approach also helps put me on the family's side, and avoids arguments over whether I am right or wrong. After all, if a child has trisomy 21 simply on my say so, then it is logical for parents to try to convince me otherwise. On the other hand, if I am ordering a test to check for potentially important information, then I am an ally, and not a stranger imposing bad news, seemingly more interested in my diagnostic cleverness than in the family's feelings. This is not an abdication of medical judgment, but rather a shift of emphasis from a specific diagnosis to more general prognostic issues. Thus, for possible trisomy 21, questions typically center on minor anomalies that are not problems in themselves, even though they suggest an abnormal process that is indeed of concern. Potentially significant findings cannot be written off as long as uncertainties remain. This needs to be kept in focus, for even if chromosomes are normal, other studies may still be needed as new possibilities are considered. But even when questions persist, parental perceptions need to be recognized. Often, in insisting on the primacy of medical findings, we seem to deny the validity of the family's observations. This is easily interpreted as an attack on their judgement or intelligence. Yet even if minor anomalies are present, an appreciation of normal characteristics is still reasonable, and important to support at a time when it is all too easy for the family to lose faith in their abilities to understand and, by implication, to cope effectively. When definitive information is available, it should be made concrete. When positive, test results can provide final confirmation and closure to the investigatory process. Instead of just reporting a chromosome result, it helps to show parents the karyotype, often with a copy to take home and
Mimics of Denial
9
a normal study for comparison. This goes for any other specific test.~ when so much depends upon a result it should be made as real as possible. Actually, feelings of unreality are remarkably common, even though not always expressed. For example, it seems common for women with stillbirths to appreciate some physical connection with the unborn child--holding it, or a picture to keep, or even a hospital footprint--to make their experience tangible, and they may have difficulties in coming to grips with their feelings otherwise. Similar needs may exist in less obvious situations; after the removal of a largely asymptomatic brain tumor, one of our patients insisted (interestingly, over the objections of the staff) on actually seeing the specimen. She found this tremendously helpful in authenticating her experience. Such direct encounters are not for everyone, but for many people they are invaluable. Making things real is often an important first step in dealing with what has happened, and in regaining some measure of control over their lives. Working through disbelief is also part of the more general process of acceptance that Kubler-Ross discusses. Strategies for dealing with specific reactions need to be adapted to individual cases. Since denial and disbelief need very different approaches, their differentiation is obviously important. Fortunately, this is usually not very difficult.
DEFERRAL Other reactions have origins and needs that differ also, and should be additionally considered. In the second type, deferral, findings are accepted while implications seem to be ignored. And again, despite a superficial similarity to denial, the dynamics are quite different. Deferral reflects the limits of what people feel they can deal with in terms of their physical and/or psychological resources. Here, acceptance involves implications that are hard to handle, and one solution is simply to put things off. Broken appointments when parents are just beginning to accept that their child might have a significant problem may be a symptom of deferral. If their suspicions are true, there will be major changes in their lives. Such changes, even when obviously necessary, are so intimidating that people understandably hesitate at facing the moment of truth. I suspect a similar reaction in many cases of "denial" of breast cancer. A women with a lump in her breast generally recognizes what it may mean. Fear, not only of possible consequences, but also of decisions to be made, effects on her life, and so on, are natural. Because confirmation has im-
Lubinsky
10
plications that are difficult even to imagine dealing with, further examination may be delayed, often with a variety of excuses, in the hope that this is all just a false alarm; rarely is there the suppression of awareness of the lump or its possibilities that typifies true denial. The major worry is, of course, that delay will only make problems worse, and it may not be medically possible to put off diagnosis and treatment. The most obvious solution is to help patients acquire or mobilize resources to cope, and to reduce any barriers to obtaining care. Sometimes just breaking down an apparently overwhelming task into a series of small steps may prove invaluable. Patients may have the necessary resources, but still need help in mobilizing them. This is often a matter of providing not only support, but also structure and guidance. Thus, with missed appointments, close work with the family may be necessary to insure compliance. Patients in deferral tend to be ambivalent about obtaining information, and if an excuse comes up, any excuse, they will grab at it like a life preserver. Repeated phone calls confirming appointment times, checking on or arranging transportation, staying late, and so on may be necessary. When the patients do arrive they must be treated gently, and acknowledging their fears can be a good way to start. Hopefully, there will be some pluses from their visit: Imagination is usually worse than reality, and things are often better than anticipated. And, even with negatives, there is a benefit in getting questions answered and in being able to plan for the future. Certainly any possibilities for intervention are important to emphasize at this time. Despite an apparent reluctance to proceed, these patients generally want to do what is necessary. With disbelief, forcing the issue is likely to be resented; however, with deferral it may actually be appreciated, especially when a relationship of trust has already been established. A word of caution, though: since deferral centers on practical issues, interventions must be perceived as useful. Otherwise, they become part of the problem instead of the solution as additional external demands that cannot be met. For example, insisting that someone struggling to support a family quit their job for health reasons may be far from practical advice. This can lead to yet another mimic of denials: Dismissal.
DISMISSAL Dismissal frees clients from apparent no-win situations by focusing not so much on information p e r se as on the legitimacy of its purveyors. For example, for physicians, when patients proclaim all doctors charlatans, inter-
Mimics of Denial
11
ested only in money and mutual protection, little room is left for discussion. Devaluing the competence of the practitioner provides a way to disregard recommendations as well as a rationale for leaving the clinical relationship. Typically, this is accompanied by anger; not Kubler-Ross's stage directed against the news itself (although this can certainly contribute to the intensity of the reaction), but rather an anger of frustration, and at a perceived betrayal of trust in the health professional as ally. This is often expressed in feelings of persecution by the system. This is also a particularly difficult reaction to deal with, since it involves an assault on our professionalism. When attempts to help are scorned and our integrity assailed, objectivity easily suffers, and dismissal often becomes mutual as we label the patient difficult. Obviously, this situation is best avoided, but medical necessity sometimes leaves little choice. Still, all-or-none approaches may drive the patient away, and partial or temporizing steps, even though less than satisfactory, may have to be accepted. If conflicts arise anyway, preserving connections is essential. Sometimes this can be done by emphasizing areas of care that the patient acknowledges as legitimate while differences are cautiously explored. Although it is difficult to hold back when health needs are pressing, a professional who remains neutral on medical issues can provide support and ultimately serve as a bridge back to the mainstream. And, as always, emphasizing patient autonomy and control can help restore an ability to trust.
CONCLUSION Ultimately, much that is labeled denial is normal and adaptive, and failure to appreciate such responses can be more of a problem than any intrinsic pathology. It is hardly surprising that unexpected information and abrupt changes are difficult to accept, or that sudden unforeseen events may seem unreal. Neither should it be remarkable that reactions are complex---even within a single family implications and perceptions differ, giving a variety of needs and responses. Unfortunately, an overly broad category of denial obscures these issues. Hopefully, better distinctions will mean better care in these stressful situations.
ACKNOWLEDGMENTS I thank Diane Baker, M.S., Kathy Beauchaine, M.S., Barbara Biesecker, M.S., Beth Conover, R.N., M.S., Beth Fine, M.S., Lois Magnuson,
12
Lubinsky
R.N., Susan Peters, R.N., M.S., Chris Sauer, M.S., and Luann Weik, M.S., for discussions, examples, and comments. REFERENCES Kubler-Ross E (1969) On Death and Dying, New York: Macmillan Co. Moore BE, Fine BD (eds.) (1968) A Glossary of Psychoana~tic Terms and Concepts, 2rid Ed., New York: The American Psychoanalytic Association, pp 30-31. Radovsky SS (1987) Bearing the News. NEJM 313: 586-588.
