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The Schwartz Center Rounds |
Department of Medicine, Division of Hematology-Oncology, Massachusetts General Hospital, Boston, Massachusetts, USA
Correspondence: Richard T. Penson, M.R.C.P., M.D., Instructor in Medicine, Hematology-Oncology, Cox 548, 100 Blossom Street, Boston, Massachusetts 02114-2617, USA. Telephone: 617-726-5867; Fax: 617-724-6898; e-mail: rpenson{at}partners.org
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LEARNING OBJECTIVES
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Learning Objectives
Abstract
Presentation
Dialogue
Discussion
Conclusion
References
After completing this course, the reader will be able to:
| ABSTRACT |
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Metaphors illuminate complex issues and can paint a thousand words. However, fundamental to individual and collective expression, they are also capable of creating or perpetuating stereotypes, and stigma. In oncology, the military metaphor is perhaps the most prominent, with the high profile of the "War on Cancer," and the imperative for patients to have a fighting spirit. Balancing the instinct to fight with words of healing and acceptance remains a challenge. The history of the military metaphor and how the humanities have illuminated cancer as a metaphor are reviewed. The advantages and disadvantages of the use of this metaphor are discussed, as well as the use of other metaphors in the psychosocial dynamic of care.
Key Words. Oncology • Support • Illness • Military • Psychosocial • Communication • Chemotherapy • Connection
| PRESENTATION |
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Facilitator:
We often talk to patients about fighting their cancer and winning the war, and that is often how we think about oncology. We invoke military imagery to help us describe the ordeal our patients go through. We have a very interesting panel to help explore this issue and reflect on how the language we use impacts on the caregiver-patient relationship.
Oncologist:
Even the pacifist and mindful caregiver and the gentlest of patients think about fighting when they are faced with cancer. It is almost instinctive. The real question is, how can we reconcile that instinct to fight, and our words of coaching and encouragement, with expressions of healing and acceptance? This is of utmost importance when things dont go so well and a patient approaches the end of their life. We have inundated our language with bellicose metaphors. Take, for instance, the language of immunology: lymphocytes are "deployed" or "mobilized," the protagonists are "killer" cells and the images are all of "battles" for supremacy and survival. Clinicians talk about a "therapeutic armamentarium," and I am sure many of us tell our patients that we know of a new "magic bullet." For many people, this language comes naturally, but for some of us, it doesnt exactly roll off the tongue. Some patients think of their experience with cancer more as a journey. What do we do when we encounter patients whose language and perspective is very different from ours?
| The real question is, how can we reconcile that instinct to fight, and our words of coaching and encouragement, with expressions of healing and acceptance?
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Oncologist:
I dont often intentionally talk in terms of winning and beating, but Im aware that I fall into it. I think it is ingrained in the culture. The fact is that Richard Nixon and Ted Kennedy started to talk about the war on cancer in the 1970s, and we have had updates ever since. I regret it when I do it, because I do think, when it doesnt go well, that you add to a sense of failure. I even found myself using it this week in a way that, as I was saying it, I said, "God, why are you saying this?" I still said it anyway. This is a patient who I have followed for the last 8 years who was finally progressing after about 9 or 10 different regimens. I was trying to ease a transition to hospice, and I turned to her and I said, "Listen, are we still going to keep fighting this thing, or are we just going to change the nature of the fight and the nature of the battle?" The minute the words came out, I realized that that was not what I wanted to say. She smiled, and the family was relaxed and it worked. In a way, I wish I hadnt said that.
Psychiatrist:
What you hope is that you find metaphors that work for you and work for your patient. If there is a metaphor that actually comes to us from our patients, obviously those are the ones that are going to fit best. I do not usually use military metaphors because I dont understand them well enough to use them, and I am worse with football metaphors. When patients bring them to me, I smile, because I actually dont know what an end run is. I now know it because of the context, but they dont really speak to me. Personally, I think in terms of sailing ship metaphors and how much wind you take and whether the craft is going to flip over; the difference between being a windsurfer and having a catamaran. I dont use sailing ships. I get emotionally motion sick. The image works for me. I think there is a piece of time when someone is overwhelmed when trying to find the words or a picture that gives them a vision of a way to perceive. Steven Koslyn did all these interesting studies on the brain about whether people are visual or word based [1]. They were sort of binary questions. He asked the question: "Do fleas bite?"If there is one thing anybody knows about fleas, it is that they bite. If you are visual, you actually picture the flea and you are sort of pulling in on the face of a flea. You think, "I dont know what a fleas mouth looks like, but yeah they bite." You can actually determine whether people are visual or word based on the basis of that question if you are monitoring their "yes/no" click button for them. The other thing I would say about metaphors is that it is interesting to ask patients if they are picturing what you are saying, in what way they are thinking about it, or how it works for them?
Psychologist:
I am going to reveal my Neanderthal beginnings in a neighborhood sort of background. I dont feel you can avoid the language of fight. I think there is a huge gender split on this. When I think about this, I think of Trauma and Recovery by Judy Herman [2], a sort of a template always runs in my mind. In any trauma, and certainly the diagnosis of cancer is a trauma, there will be some sense of terror and fear, a sense of disconnection, and a sense of captivity. Even after the diagnosis is made, there are going to be clusters of symptoms, fight or flight, intrusive thoughts"I cant sleep," "I cant eat," "I cant stop thinking about it"and for some, emotional avoidance and withdrawal"Im beat up," "I dont want to talk about it," "I dont want to hear about it today." Part of our job when we are dealing with anyone that is traumatized is to get him or her to some place of relative safety. That might be, "your cancer is gone." It might be, "I can help you with your kids so you dont have to worry about your kids" or "this is what we can do for you." You are looking for some sense of emotional and/or physical safety. Also, there is going to be some period of readjustment, perhaps grieving and mourning, reframing. What is going on now? How do I understand my life in the light of this trauma? Hopefully, there can be some sense of reconnection.
I am looking for whatever metaphor has to fit the patient. I have used military metaphors. I see adolescents in clinical practice from ages 14 to 50, adolescent males, a lot of cops, a lot of athletes, and a lot of neighborhood people. Therapy, 90% of the time, is all about the well-placed death bomb, which is knowing the right time to swear and use that aggressive language: "I get it; I know youre screwed. I am with you." Churchill said the first casualty of war is truth; the first casualty in trauma is a sense of control. If that is prolonged, then there is a sense of despair and a loss of hope. I am looking for metaphors that help me let that patient know I acknowledge where they are, I can bear it with them, and maybe I can offer them some perspective. I just used one the other day about George Gay, who was a pilot in the Battle of Midway, and he was the first guy shot down. He was in the water for the whole Battle of Midway. The sense of loss of control and watching something unfold in front of you and being swept up in the current trying to survive while you are watching this truly was not a very hopeful metaphor, but what it did for this guy is that he knew; a moment of insight: "Oh, youve got it." Now, that sets me up to provide them some clues and provide them some coaching.
| I am looking for metaphors that help me let that patient know I acknowledge where they are, I can bear it with them, and maybe I can offer them some perspective.
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My dad died of prostate cancer. At the end of his illness, the doctor was still looking for a magic bullet. Spiritually, we were in a different place. We had done the last rites and the whole ball of wax. The fight then was: "I dont want to see you die the death of a thousand cuts." The fight was to die a noble death, and for us, to do it the right way. I think there is always a fight because there is always a fight between good and evil or trying to do it a little bit better. The fight may not be to beat the cancer, the fight may be: "How can we do this with dignity? How can we really understand your whole life, and get as many people where they should be for whatever you need to do?"
Pediatric Oncologist:
In thinking about this and also talking it over with my colleagues, the consensus was that most of us didnt find this metaphor very useful when talking with children, and we actually had some special concerns about using this kind of language with kids. I think that even very young children quickly learn to associate war and battles with dying and death, so I think that is a pretty scary way to frame it for a child. Most of the time in the pediatric world, we approach things with a lot of optimism and hope. It may also convey that it is really the childs responsibility to fight hard enough to beat their cancer. They should not have the feeling that it is their job and if they are good enough and they do everything right, they are going to survive their cancer. I do not want to convey that they have more control over their illness than they really do. I think we tend to use language like "work." This is going to be "work," and its going to be hard work, to recognize the role that the child has and everything they are doing. That is somehow less frightening than fighting and battle. Also, I think it is very important to use language that takes it on with the child: "We are going to do this" for example, so it is phrased as a joint plan. We may use more sports metaphors, such as "game plan." I just worry about defeat and the idea that the child did not fight hard enough and that somehow it is their fault or the familys fault. Certainly, we also go with the family. Sometimes, families bring these metaphors in themselves. I think especially with older adolescent patients, I have families who use a lot of this language. They find it helpful and I may go with that if it seems to work for them.
Oncologist:
Occasionally, there may be a mismatch with a patient who comes and wants to "beat it," and you may be the kind of person who is not very comfortable talking about it, but I think it is part of our professional obligation to find common ground and find ways of relating. I like the concept of joining our patients either as partners in a fight or worrying together about what is to come.
Through language the doctor needs to provide mile markers in the patients journey, to tell the patient roughly where they are, and to signal them when there is a drastic change. I think there is a prominent idea that the language that we use puts patients onto some path of recovery, helps them cope. Ultimately, it is both their disease and their inner source of resiliency that is going to determine what happens. But, I think our language can be enormously powerful in helping patients understand the disease trajectory and moments of transition.
| DIALOGUE |
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Pediatric Intensivist:
The observation that most embodies the military metaphor for me is that I frequently hear parents on the neonatal intensive care unit refer to a 2-pound premature newborn as a "fighter," that they are "such a fighter." It gives a lot of comfort to the parents.
| The whole point is to find common language and to strengthen the alliance and let the patient know that I'm there with them.
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Oncologist:
The military metaphor extends to other areas. When we first started using G-CSF, there was a concern that, if you used G-CSF with chemotherapy, patients might have a worse outcome because the chemotherapy kills regenerating cells. I remember explaining it like this. "It is sort of like World War I. What would happen is that if you give the G-CSF, the wave of infantry (the white cells) gets up out of the foxholes and a machine gun (the chemotherapy) shoots them all down." I think it described very well what could be happening.
Pediatric Oncologist:
I remember a funny story when we were talking about this in our clinic. This is the danger of using words in very young children who are very concrete. There was a 6-year-old child that was having a procedure in our clinic and the mother really liked to talk about "keeping on fighting," youve got to "keep fighting," youre going to "beat the cancer." The child literally would kick and hit the nurses and doctors when they were trying to do a procedure. She actually thought she was doing what her mom wanted her to do, in a very concrete way. The nurse finally recognized that that was what was happening and explained that the mother actually meant something different.
Oncologist:
Think of how many times you make a condolence call and you say, "You know, she was really a fighter." That resonates so well with the family. That is very comforting to them. Think of the number of times patients write to you after the patient dies and say, "Thank you for fighting with us. He always knew you would be fighting with him. You would never give up." I think the military metaphor is not all or none, and it is important that we are positive in the face of failure.
Power of Positive Thinking
Palliative Care Physician:
It is pursued in the hope that we have some control of mind over matter. If you fight, you will conquer. It is a primitive notion we all have. Frankly, most of the time I dont think it is true, but it is not a totally bizarre notion. If you give up hope, youll die. Weve all seen people going downhill and giving up.
Nurse:
I often hear, "If I dont fight hard enough, I am letting my family down."
Oncologist:
Another image that I think is counterproductive is the "Pac Man" model for visualization. It encourages the patient to activate their immune system to kill their cancer. We have to be careful about the implications. When their disease progresses, they have lost in a second major way, in that they feel responsible.
Oncologist:
I think there is a tyranny of positive thinking that goes along with these metaphors. Sometimes, you see it in couples, too, where one person wants to voice their fears and one wants to shut them down. If you dont think positively, bad things are going to happen. There is a quote in the book Uplifting by a breast cancer survivor who said that there is not much you can do about the length of your life, but you can make it wider and deeper, which is a wonderful thought [3].
Oncologist:
There is a rise in narcissism in our culture, and it is often accompanied by fantasy, with the hope that desire will trump reality. We want to live in a microwave culture, where I get what I want instantly and magically, with no struggle and no fight. I dont know about you, but that does not conform to my view of the world. I want my kids to be fighters; I want my patients to be fighters. But, I want them to fight for the right thing. You can fight for courage, loyalty, and living well. I want that little 2-pound kid to be a fighter. I dont have as big a problem with saying "lets fight." The question is at what point are you still holding on to your metaphor in the wrong fight.
Psychologist:
The antidote to a narcissistic character disorder is time and willingness to spend time, it is a relationship. As a parent, you stay up late when your kid is sick and you help them with their homework and you hang in there. It strikes me that all of us as caregivers are always under a time pressure. I have to name that tune in three notes. The antidote is character, and is built by relationship, and that means knowing your patient. Tell me about yourself. What is your spiritual journey? What is your faith? Can we talk about the fight or do we have to talk about it in some other way? Thats fine. Ill talk about it any way you want to talk about it. That takes time and it takes effort.
| Czechmeister has called the metaphor a "two-edged sword," suggesting that, while metaphors are fundamental to individual and collective expression, they are also capable of creating negative forces, such as confusion, stereotype, and stigma, within society.
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Variation on a Theme
Oncologist:
My patients use the roller coaster image as a way of conveying good moments and bad moments, highs and lows. Whatever works is fine with me. The whole point is to find common language and to strengthen the alliance and let the patient know that Im there with them. If the ride is going to be bumpy, I am going to experience those bumps in the road as well. I think there is a piece of the metaphor that is our way of augmenting someones experience, that roller coaster sense that just when you think youre in a good place, the bottom drops out and your stomach goes with it. It is very expressive. It helps make the experience nearer for the caregiver. Whether it is the carer bringing the metaphor to the situation or the patient, both are looking for ways outside of their regular day-to-day descriptive language to describe what they, or somebody else, feels.
Oncologist:
I think there is still a lot of cultural pressure for sick people to distance themselves. These metaphors are a way of saying, "I get it and Im in it with you."
Oncologist:
I think our experience in Vietnam and Iraq has taught us that there are a lot of negative aspects to war. I think that culturally people also relate that side of things.
Oncologist:
There is collateral damage in the language, but aggressive language is applied to virtually everything we do in medicine. For example, there is an aggressive antiemetic regimen and aggressive rehydration. There is a seduction that aggressive treatment is better.
Oncologist:
More isnt always better. I think information can be the same as chemotherapy. I dose it depending on the context.
Psychiatrist:
Most patients are living with a lot of uncertainty. Many patients will tell you there is no such thing as false hope. Hope is what allows you to cope in an awful situation, present in the moment. Many patients know they are dying and it would take a miracle to survive, but they are having a good day and feeling optimistic about something, and it may bother the medical staff because they feel a responsibility to drive home the bad news one more time. We feel as if we are sitting with the worry and theyre not, so we push it back on the patient. It is very unkind. Its an error of kindness but it feels to the patient very unkind.
| DISCUSSION |
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One in three people will get cancer in their lifetime [5, 6]. The lifetime probability of developing cancer is 45% for men and 38% for women. Approximately 563,700 cancer deaths are expected in the U.S. in 2004, and currently, one in four deaths in the U.S. is due to cancer [7]. Lung, colorectal, and breast cancers account for 50% of the total number of cancer deaths among men and women. Cancer is commonly seen as indiscriminate, ruthless, and synonymous with death.
| With physicians on the "front lines," using their "armamentarium" in search of breakthroughs, and where "brave" patients "soldier on," basic science has only reinforced our appreciation of the "attack."
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Metaphors
Metaphors permeate our daily language, and we are often unaware of the use or power of metaphor. How many times have you heard the phrase "time is money?" We understand the phrase in a figurative sense, but it disarms our awareness. Lakoff and Johnson suggested that metaphor goes beyond language and into the realms of thought and action [8]. They define "the essence of metaphor [as] understanding and experiencing one kind of thing or experience in terms of another" [9]. They conclude that the metaphor is not simply the use of words; it also encompasses the very concept of an argument. The use of metaphor should, therefore, be continually challenged. Czechmeister has called the metaphor a "two-edged sword," suggesting that, while metaphors are fundamental to individual and collective expression, they are also capable of creating negative forces, such as confusion, stereotype, and stigma, within society [10]. She highlights the use of metaphor in the nursing profession, and the need for nurses to communicate with patients "in language as free of stigmatizing and frightening metaphor as possible." With the harmful potential of metaphor usage, the question begs to be answered: why are metaphors so prevalent?
Metaphorical language can be more tangible than factual information; consider the language of pathology and the use of food as descriptors. Metaphors do not convey facts, but add clarity and depth of meaning [10]. In the relationship between the patient and the disease, there exists a substantial discrepancy between the patients everyday notion of illness and the medical concept of disease [11]. The patient understands the notion of illness in the framework of lived experiences, but understands the medical conception of disease in a scientific framework, disconnected from the actual meaning of the situation [12, 13]. Metaphor can bridge the gap between the illness experience and the world of technology and treatment [11, 14]. The use of metaphorical language is, of course, not unique to Western culture. North Indian cultures use metaphors, such as burning, stabbing, and gripping, to describe the pain of illness [15]. In some cases, metaphors traverse more than one culture, and the applicability of metaphorical language rests both upon specific cultural mores and the universality of experience [16]. The samurai of Japan have enculturated the military into medicine as much as western imperialism. In the Far East there is a more confident appreciation of conflict, perhaps epitomized in the Chinese character for crisis, which can mean both danger and opportunity.
Military Metaphor
There is a long history of the use of military metaphor in medicine. John Donne wrote Devotions Upon Emergent Occasions in 1627 when he thought he was dying, and described his illness as a cannon shot and a siege [17]. Donnes "rebellious fever," that "blow[s] up the heart" is an invader, a link that was intensified, centuries later by the scrutiny of Virchows microscopic appreciation of pathology. Later, the concept of the military metaphor would be retrospectively applied to nursing practices in the late 18th century [18]. The nursing profession was characterized by loyalty and obedience, the two key qualities that soldiers were expected to demonstrate [18]. Nursing was organized in a very structured and military manner [19]. Nurses took "orders," worked at "stations." As nurses progressed up the "ranks," "stripes" were added to their caps and "insignia pins" to their "uniforms." Sometimes their "orders" even called for them to give "shots" [18, 20]. In the 20th century, nursing began to evolve into a more patient-oriented profession with the advent of the patients rights movement of the 1960s and 1970s, and with a legal responsibility to advocate for the patient [20, 21].
More recently, in the U.S., we have collectively adopted a military metaphor to describe scientific efforts in cancer research. In 1971, President Richard Nixon signed the National Cancer Act into law. This was the first comprehensive national cancer legislation in the U.S., and "mobilized the countrys resources to make the conquest of cancer a national crusade" [22]. It created the National Cancer Institute (NCI), as well as advisory boards and panels that reported directly to the President; it granted authority to the NCI to bypass traditional budgetary mechanisms and submit requests directly to the President; and it provided the director of the NCI with extensive authority to make autonomous decisions without prior approval and codified the use of the military metaphor in cancer medicine. With physicians on the "front lines," using their "armamentarium" in search of breakthroughs, and where "brave" patients "soldier on," basic science has only reinforced our appreciation of the "attack" [23]. As the "battle" has intensified, so too have calls that we may be losing the "war on cancer" [24].
Even when the physician attempts to convey knowledge about the pathological processes involved in their diseases, this knowledge rarely meets the patients desire to be better informed and cope more effectively [13]. Without a common language, patients and physicians risk not having a shared understanding of the situation [11, 25]. The metaphor offers both the patient and the physician a common language and shared understanding, offering both simplification and connection.
| Although we may argue about the use of metaphor, and dissect the meanings behind the words, one thing is certain: the war on cancer continues.
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Humanities
Since John Donne, literature has been replete with metaphor in medicine. Before cancer, tuberculosis was the "capricious and intractable" scourge of medicine [26]. Tuberculosis was given the metaphorical term "consumption" in 1398 by John of Trevisa [27]. In the Victorian era, tuberculosis was sanitized by blaming predisposition to tuberculosis on a poetic and sensitive disposition, and the likes of Keats and Shelly glamorized the disease with such sensual interpretation that Byron wrote to a friend in 1810 that he should like to die of a consumption for its "interest"an interest still propagated today in the thinness of modern models. The confinement to remote sanatoria stigmatized the disease with the same isolation felt by many cancer patients. The word cancer is derived from the Latin word for crab, embodying the invasive nature of the disease. St. Jerome described a mans bloated abdomen as "pregnant with his own death." Cancer gallops and shrivels, and much more rarely transforms the face of inevitable suffering and death [26, 28, 29].
Sir Astley Cooper said, with ignorant reductionism, in 1829 that grief and anxiety (a nervous and irritable temperament) are among the most common causes of breast cancer [30], an injustice still propagated in the punch bag Type C personality, with little evidence base [31]. Marginally more kindly, the arts have most often caricatured the victim of cancer as resigned [32]. Despite such neuroses, there is a prevalent belief that the words can kill faster than the disease [33]. Nietzsche gave the advice to "calm the imagination of the invalid" so that they not "suffer more from thinking about [their] illness than from the disease itself" [34].
Cancer does have many punitive connotations and has been used as a metaphor for evil, and the cancer ward a metaphor for Stalinism [35]. Cancer can bring out the best and the worst in people, with "love and loyalty shattering" in the face of a "test of moral character" [26]. Susan Sontag has done more than any other to demythologize cancer with her book, Illness as Metaphor [26]. A cancer patient herself, she clearly showed how the metaphors can add to the suffering: "nothing is more punitive than to give a disease a moralistic meaning." Sontags mandate being that cancer is not a curse, but curable, and she remains a potent advocate for patients to seek good treatment [26]. The hope remains that, just as with tuberculosis, progress through improved knowledge and treatment, the shrouds of myth will fall as new treatments succeed.
Criticisms
Although the military metaphor may give the physician a "shield" behind which to work, this is rarely seen as a carapace that allows the vulnerable to grow, and the military metaphor is increasingly criticized because it reinforces and preserves male dominance and authoritarian relationships within the medical establishment [20, 36]. As Easlea surmises, "[it] is [a] fact that medicine has grown out of a science governed and dominated by men and masculine patterns of thought" [36]. In this environment, emotional restraint and the pursuit of power are rewarded. Hodgkin suggests that the "medicine is war" metaphor has serious implications, because it constructs the patient as passive and uninvolved and the physician as active and in control [37]. It enables the physicians and the diseases to be the focal points of the battle. Bioethicist George Annas calls the military metaphor "antiquated," and blames it for leading people to "over mobilize" and view medicine in a dysfunctional manner [23]. This view is characterized by an emphasis on solving problems with more technology. In Annass opinion "military thinking concentrates on the physical, sees control as central, and encourages the expenditure of massive resources to achieve dominance" [23]. Other metaphors have grown from advances in understanding, such as the regulation of cellular division, concepts, such as angiogenesis (Judah Folkmans "war on cancer") [38], therapeutic strategies, like boosting immune competence, or interpretations, like sailing, work, and the journey [26]. Annas proposes the use of the ecologic metaphor, arguing that the language of ecology, which is characterized by words such as sustainable, balance, responsibility, and conservation, is consistent with the concepts of prevention and intervention [23]. He concludes that the ecologic metaphor has the ability to provide us with a new vision of health care that would not only address the problems within the health care system, but also focus on current problems within our culture.
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Minerva BMJ, December 4, 2004; 329(7478): 1354 - 1354. [Full Text] [PDF] |
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