Hearing Bad News

Abstract

Personal reports of receiving bad news provide data that describes patients’ comprehension, reflections, experienced emotions, and an interpretative commentary with the wisdom of hindsight. Analysis of autobiographical accounts of “hearing bad news” enables the identification of patterns of how patients found out diagnoses, buffering techniques used, and styles of receiving the news. I describe how patients grapple with the news, their somatic responses to hearing, and how they struggle and strive to accept what they are hearing. I discuss metaphors used within the languages of hearing bad news. Finally, I discuss implications for a change of focus in the breaking bad news research agenda, that is, from the physician’s “performance” to a patient-focused agenda.

Since the 1980s, medicine has been concerned about breaking bad news, a concern reflected in a vast literature. The assumption underlying the majority of these studies is that if the news is delivered in an optimal way, patient comprehension will be increased, the shock of the news will be minimized, and patients may make wise choices regarding their therapy. Therefore, research has focused on the physician’s telling—on the performance of delivery—and on workshops and educational materials dealing with the pacing and mode of delivery of bad news. If patients are involved in this research, they are only asked about their satisfaction with their physician’s delivery of the news. This physician-centric perspective omits one important aspect: What do patients hear when given bad news?

The autobiographical literature is a rich source of descriptive material to elicit patient responses to hearing bad news, presenting detailed accounts from the patient’s perspective.¹ By using this literature as data, conducting content and thematic analyses of these descriptions, and performing a linguistic analysis of the metaphors contained in these descriptions, I was able to obtain an understanding of the range of responses and effects of hearing bad news. I consider: What is it like to receive bad news? What does the hearer comprehend? What circumstances mitigate, buffer or ease the hearing of bad news? What effects does hearing bad news have on the self? And, as bad news invariably changes one’s anticipated life course, how is this news absorbed, comprehended over time, and the ramifications of the news understood and incorporated into the self?

Method

Biographical trade books and short stories containing descriptions of patients and their relatives as they received bad news were identified as sources of data. The processes of hearing bad news or accounts of coming to understand about one’s illness or prognosis were analyzed as cases. While perhaps not comprehensive, these cases may be regarded as representative of a wide range of illnesses and responses and as preliminary findings only. Initially these cases were sorted into the following categories (see Table 1):

Table 1 Parameters of accounts of hearing bad news

• Onset, sudden (such as accidents,² myocardial infarction,³ silent illness⁴) versus chronic with slow or incremental diagnosis (such as Alzheimer’s,⁵, ⁶ or cancer⁷), with an intermediate category of suspecting (such as a congenital defect diagnosed at birth,⁸ prematurity,⁹ or hereditary disease, such as, multiple sclerosis¹⁰).

• The reporting (narrator’s) voice (i.e., the patient’s, family member’s or caregiver’s), and who primarily described the hearing (i.e., the patient or the family member).

• The response to hearing (i.e., relief or immediate acceptance,¹¹ versus confirmation of worst fears, or shock and horror).¹²

• The context and trajectory of hearing bad news. That is: what did the person understand immediately, when and how did understanding occur, and how were the implications of the news for the self realized?

Autobiographical descriptive data proved to be more useful than observational data, which contains dialogue and body language, but no information about comprehension, reflection, or little about experienced emotions, or interview data, which provides no information about dialogue or observed behavior.¹³ Rather, autobiographical description reveals both these diverse perspectives, as well as interpretative commentary or wisdom of hindsight. For example, in Heartsounds, Martha Lear writes:

For the next thirty-six hours his situation was precarious. They would answer none of my questions. They said only, “Let’s wait a couple of days,” with little pats on the shoulder that filled me with dread.

At the time, I thought it was deliberate evasion. It was, partly. Most doctors—at least those I have known, and they are surely no better or worse than most—cope badly with families in times of emotional crisis. Emotions make them nervous.

But mostly, they told me nothing because they knew nothing.¹⁴

In order to develop comprehensive analysis, I attended to different courses of illness—rapidity of onset and prognoses, purposefully selecting a broad range that would provide diversity in ‘telling.’ I then identified commonalties among the texts, delineated patterns and described trajectories and outcomes. Finally, as metaphors were often used to convey understanding and provide immediate comprehension of experiences, I interpreted these textual descriptions by examining the metaphorical language describing hearing bad news. As used in everyday language, metaphors are based on physical and social experiences and reflect cultural and personal values.¹⁵ Metaphors are a way of representing features of an experience, often through imagery or body sensations by making implicit comparisons.

There is often tension within metaphorical statements because of the incompatibility of either verbs or nouns; however, in use of a metaphor, the speaker does not intend a conventional or literal interpretation. Instead, the listener or reader is required to interpret meaning through comparison of characteristics and underlying ideas. Thus, meaning of the metaphorical expression has to be reconstructed or interpreted from the context and the speaker’s intention.

Results

Learning that one has a debilitating or terminal illness is a life-shattering event that threatens the self and changes life as one presently knows it. The news invariable “shocks,” unless one has had forewarning, or there is a slow onset of symptoms. Yet even with chronic psychiatric illness, the moment of self-realization or recognition that one is actually sick is as shocking as being told by someone else, as described by William Styron in Darkness Visible:

Suddenly I was flabbergasted, stunned with horror at what I had done. . . . I implored Madame’s assistant, a bespectacled woman with a clipboard and an ashen, mortified expression, to try to reinstate me: it was all a terrible mistake, a mix-up, a malentendu. And then I blurted some words that a lifetime of general equilibrium, and a smug belief in the impregnability of my psychic health, had prevented me from believing I could ever utter; I was chilled as I heard myself speak them to this perfect stranger. “I’m sick,” I said, “un probleme psychiatrique.”¹⁶

Patterns of finding out

Cascading

Bad news is rarely given—or realized—all at once. Cascading is a term for the patient’s incremental accruing of diagnostic results indicating a serious disease. The confirmation of one set of test results leads to another test and to increasingly ominous results, destroying hopes like falling dominos. After a period of time, these tests hone in on “the problem,” until the reality of the diagnosis and actuality of the prognosis can no longer be avoided:

It could be Multiple Sclerosis, or Guillain-Barré syndrome. I think we can safely rule out myasthesia gravis at this point. . . . We’ll just have to wait until we do a spinal tap tomorrow, and then we will know. . . .”¹⁷

This approach is also used when the physician may be somewhat uncertain about the diagnosis but suspects a serious prognosis. Relatives and friends use these techniques as well to conceal diagnoses from one another or to gradually/incrementally reveal the information. This example comes from Brown and Carchidi’s story of Adam Taliaferro:

Andre hid the truth. “I couldn’t tell her, ‘Your boy is going to be paralyzed for the rest of his life’—at least that’s what they’re telling us,” he said. “So I told her, ‘Well, they don’t know yet.’ I just accentuated the unknown. I told her, ‘Addie, when you get out here, he’s got tubes in him. He’s not going to look good; he’s in pretty bad shape. You’re going to have to maintain your composure. You can’t cry in front of him’.” . . . . Within a week of the injury, three doctors affiliated with different hospitals gave Adam’s parents the same numbing news: Do not expect your son to walk. Ever. Addie and Andre Taliaferro did not share the news with Adam.¹⁸

Furtive finding out

An important style of obtaining bad news is to stage events which might surreptitiously “trick” physicians into providing cues or tangential information, enabling the patient to identify the actual prognosis. An excellent example of such a strategy is provided by Betty Rollin, who used the duration of surgery as an indication of whether or not mastectomy had actually been performed in First, You Cry:

The evening before, I had asked Dr. Singermann how long the operation would take. He told me that it was scheduled for 9 A.M. and if the tumor was benign I would probably be through and in the recovery room at about 11. Otherwise, he said, lingering on the comma, it would take longer, probably until sometime in the afternoon.

When I awoke in the recovery room, a nurse came into focus. I wasn’t altogether conscious, of course, but my brain was working—well enough to figure out that the nurse probably wasn’t supposed to tell me anything but surely she wouldn’t refuse to answer the little old innocent question like what time is it. You fox, I thought to myself as I asked her the question.

What time is it?

“It’s three fifteen,” she said promptly.

I went back to sleep.¹⁹

Incremental informing

Bad news is rarely given without providing some cues that bad news is forthcoming. From the earliest texts, physicians and nurses were taught, if a patient died, to phone the relatives with the news if their relative’s condition had “deteriorated.”²⁰ Once at the hospital, the relatives were informed face-to-face that their loved one had died. This strategy ensured the safety of the relatives as they rushed to the hospital, and also provided them with ‘forecasting,’²¹, ²² or at least to attend to the possibility that the patient may be gravely ill or had died. This practice continues:

Back in the Taliaferro home, the phone rang. It was Dr. Sebastianelli. He did not tell Andre that his son, just three months after his high school graduation, had a broken neck—specifically, that his fifth cervical vertebra, just above the base of the neck, was shattered and his spinal cord was bruised and filled with blood. Adam had lost all motor function below the point of the injury.

But the Penn State doctor would supply these details later. For now, he just needed Andre to know that his son was in danger, that he needed him to carefully get to Ohio.²³

In chronic illness, knowledge of “bad news” develops incrementally along the illness trajectory, usually as the symptoms appear or increase over the course of the illness. When an individual first suspects illness (dis-ease), he or she begins “reading the body”²⁴ to identify symptoms, attempts to manage symptoms through trial and error processes using lifestyle changes and over-the-counter-medications. The person may then seek advice from acquaintances and try complementary medicines. Eventually, when the symptoms become severe enough, the person will seek advice from a physician who may suggest that the illness “looks like ____,” narrow alternative diagnoses, rule out or confirm a suspected disease(s) with various diagnostic tests in order to diagnose. As test results are obtained, the patient is incrementally given more concrete information, often including several possibilities or diagnoses to be ruled out. Although an actual diagnosis may not be confirmed for some time, this period allows the person to get used to the idea that something serious may be wrong. Despite warnings, the significance of the news may not initially be understood; although the words are heard, their meaning is not grasped. The following examples are from Callahan’s Don’t Worry, He Won’t Get Far on Foot; Cohen’s Blindsided: Lifting Life Above Illness; and LeBlanc’s story in An Unexpected Journey: Women’s Voices of Home After Breast Cancer:

Could I feel that? No. Or anything over here? No. How about here? Nothing. So what was wrong with me?

You’re paralyzed.

For how long?

Probably for life.

I did not feel the weight of those words at that time. I heard them, all right; but they held no more significance than hello or good-bye.²⁵

The appointed hour for my telephone rendezvous with the neurologist came. I was in my apartment alone, planted in a chair next to the door that suddenly took the appeal of a fire exit. I sat. Waiting, I pulled up the small table with the telephone on it. The phone was green, though it should have been hotline red, with a flashing light and siren.

I was staring at the phone and jumped when it ran, “You have multiple sclerosis,” the neurologist announced coolly. The doctor added a perfunctory “I’m sorry.” There was nothing more to say, neither a word of consolation nor a recommendation of treatment. . .

I heard the official diagnosis, the verdict pronounced by a jury of one. Ba-da-boom. Unbelievable. What a mistake this was, and nobody got it but me.²⁶

In a matter of one week, I had gone from perfect health to the prospect of losing a body part. But what freaked me out the most was the thought of being anaesthetized for the operation. It was the procedure itself that scared me, not the cancer. I was not yet ready to be scared of that.²⁷

Processes of finding out

Finding out is usually driven by hunches or suspecting or the desire to be certain; that is, confirming. Only occasionally is the person unable to determine if the news is ambiguous (uncertain whether it is good news or bad).

Suspecting

Sometimes a problem may be suspected by the patient, but confirmation of an actual pathology still comes as a shock. Still, the earlier “nagging” doubts provide at least some preparation for the receipt of the bad news. Such was the case during the birth of van Tighem’s twins: the first was a healthy male, the second, a female with Down Syndrome:

I am afraid for the baby on the right, which hardly moves. The doctor tells me not to worry; some fetuses don’t move very much. Almost, I allow myself to be reassured. But the feeling stays. Something is wrong. . . .

Doctors and nurses cluster around our new baby girl. The room is hushed. Instruments click. People’s faces are serious.

I peer from my flat-on-the-back position, around Trevor’s body at my side. “What’s wrong? What’s going on?” . . . .

Through a gap between the bodies I see my second baby lying on the special table, limbs splayed, head extended back. For a moment I can see her little face. “Oh no!” My cry is weak. “She’s got Down syndrome. Look. Oh, Trevor, Down syndrome.”²⁸

In the above case, the infant’s mother was a nurse and the father a physician, so that even if the obstetrician wanted to delay giving the bad news, this was not possible as the defect was obvious to both parents. In another example of the birth of a Down’s infant—Huggett’s Life with Jessie, the mother did not suspect the abnormality during pregnancy, and the breaking of the news was not given during delivery, although at that time the mother suspected something was wrong with the infant:

“Who does she look like?” the nurse asked as she placed this scrunched up bundle of life into my open and waiting arms.

“Dr. Sim,” I joked, referring to my Asian obstetrician, who was impishly grinning at me through my legs.

The next morning, as Dan was finishing the jubilant phone calls to friends and relatives, a strange doctor walked into the room. She slowly pulled the white curtain around my bed and stood there silently, waiting for Dan to finish talking on the phone. My whole body stiffened when I saw her.

“There’s something wrong…” I said, hoping that if I said it, it wouldn’t be true.

“Yes,” she said, “we think your daughter has Down syndrome.”²⁹

In both cases, accepting the infant with Down syndrome did not occur immediately, and it is important to note that this acceptance took time and in both instances, there was a period of grieving for the loss of or grappling to accept the expected normal baby; both mothers learned to love their infants in the intervening days, and both were taught how to value their infants differently from their other children, as Huggett describes in the first passage and Van Tighem in the second:

I had a hard time sorting out the facts and my feelings. I would sometimes retreat to the cafeteria, and it was there that I met Anne. I must have looked forlorn and confused as I nursed my juice and this cheery woman next to me asked what I was in for. “I had a baby,” I said. “She has Down’s syndrome.” I was trying the phrase on for size, as I would find myself doing for the next two months or so.

“Oh, how wonderful!” she said. I looked at her, wondering if she had heard me right. She smiled. “My son Scott has Down’s syndrome. He’s seventeen, and what a boy!” She laughed with pride and love.

I knew it was time to go home.³⁰

Trevor and I sit, beaten and exhausted, waiting for the pediatrician. It is more work than we could have imagined to manage three children. Our grief about Ellen wastes us. We have such anger but won’t admit to it.

Dr. Fagan is dark-haired, with glasses and a genial, welcoming smile. He instructed Trevor in pediatrics at medical school.

Trevor and Patricia. Please come through. And these are your children. They’re beautiful.

I am taken aback. Dr. Fagan is not what I expected. He looks at each of us when he speaks. He shakes both our hands.

His holding and unwrapping of Ellen is infinitely gentle. He smiles down at her, speaking softly and crooning, looking deep into her fascinated eyes. He handles her as though she were precious and wondrous. We watch. We soak it up. We are given a lesson in valuing her.³¹

Ambiguity of news

The ambiguity of many events and the rapidly changing nature of the illness event often leave patients and their relatives not knowing what is good and what is bad news, confused about what the real message is, and, consequently, how they should respond. A common example of such ambiguity is the news that the patient is now unconscious but is no longer feeling pain. Murphy, in The Body Silent, describes receiving a diagnosis of paralysis that would not necessarily be fatal:

And a benign spinal cord tumor can totally and irrevocably paralyze a person from neck to feet, eventually sentencing him to a respirator. On the other hand, the doctor added, ependymomas seldom kill people; you can live for years with one. I thought a moment, then asked, “Is that good news or bad news?”³²

Another example is from the Stinsons’ story, The Long Dying of Baby Andrew, when Peggy’s miscarriage was transformed into a birth, as their premature infant breathed and was subsequently transferred into the neonatal ICU. They are left with a conflicting message and mixed and contradictory responses:

“This calamity had brought a chaplain to console, a social worker to tell me I wasn’t to blame, a girl to say the hospital wouldn’t report this birth to the newspaper, and now, with disorienting suddenness, it had moved on to a new definition, a new set of prescribed routines. I knew it was the practice after a birth here to stop by the nursery on the way up to the maternity ward. And of course it was the normal routine to smile a lot and say happy things about the baby. The forms have the power to create the substance—this had become a happy event…

I tried to fit in with the nurses’ mood, to smile appropriately and ask hopeful questions. We had moved into a new stage of the charade now; I must try and keep up with the stages, try to play my role. Try to keep the nurses from sensing the blackness inside me.³³

Strategies for “softening the blow”

Several strategies are practiced by physicians and relatives, intended to “soften the blow” to reduce the shock in the patient. These strategies include countering the information, buffering and blocking:

Countering

Countering is minimizing the impact of the news by withholding certain information, giving the diagnosis without the prognosis, or when asked the severity, insisting that “no one knows”:

I said, “He is dying.”

Martha, you’ve always known. Haven’t you?

Sort of. And yet no. I swear this is true. They had told me in various ways that is was bad. But then you say to yourself, What does bad mean? Bad can mean cancer that takes ten years to kill. And suddenly I’m told a year, or months, and there is no way I can hope for it to be open-ended anymore.³⁴

Buffering

Physicians use techniques to slow the telling or reduce the impact of the bad news, perhaps giving the person time to anticipate the news, to brace him or herself, and to process it. These techniques include using euphemisms and delaying the news over a short time while providing clues or giving warnings. Euphemisms ‘soften’ the telling, as do such words as ‘malignancy,’ rather than ‘cancer.’ Physicians may also buffer with their behavior, deliberating signaling to the patient that bad news is forthcoming by pacing their news, using rote preambles such as, “I’m sorry to tell you. . .”, and “Unfortunately. . .”, and with their demure, compassionate expressions. This example is from Woodman’s Bone: Dying Into Life:

“The news is not good,” he said.

“Cancer?” I asked.

“Yes,” he said. “I didn’t want to tell you while you were in New York. The surgery will be on the eighteenth.”³⁵

Buffering techniques also include false assurances with the health care professional either suspicious and following up or disregarding the significance or accuracy of the news, as exemplified in Dackman’s book, Up Front:

The nurse found a slight thickening at about twelve o’clock, above the nipple on the right-hand side. I found out later that what you feel on one side and fail to feel on the other is by definition suspicious. “It’s probably nothing,” the nurse said. “But a surgeon will want to do a fine needle aspiration just to be sure.” I thought she was going to send me home, but instead she was making arrangements for an immediate evaluation.³⁶

Relatives and friends also try to reduce the impact of the prognosis, buffering by minimizing the seriousness of the news:

She quickly returned to her room and an all-night phone vigil began. First, it was her brother who called and told her to stay calm. Then her dad called. “He tried to tell me some football players get hit and they get a shock in the spine and get paralyzed for only a few seconds. He said they were probably only taking a precaution with the backboard and the stretcher; he was trying to comfort me and I was hysterical,” Jen said. “I was shaking and in a state of shock. I got off the phone with my dad and called Adam’s dad.”³⁷

Blocking

In some instances the suspected illness is not readily diagnosed, or the clinician may be unwilling to disclose the diagnosis. Often this forces patients to “doctor-hop,” seeking the opinion of physician after physician in search of treatments to alleviate symptoms and for the identification and confirmation of the disease, so that they know if something is really wrong, and what it is, as much as they are seeking treatment. After such a search, the final diagnosis comes as a relief, despite the seriousness of the illness. Thus, in these instances, ‘bad’ news may even be welcomed as described by Stephani Cook in Second Life:

I practically skipped back to Dr. G’s along Park Avenue. I wasn’t crazy! I wasn’t crazy! I really was sick! Thank God! It was an unusually warm day for April, so I took off my light jacket and tied it around my waist. I felt important, with my impressive package. I felt substantial, with my real sickness.

I felt more alive than I had since the fall.³⁸

Patterns of seeking news

The first pattern, Searching for cues, is rather like Furtive finding out discussed earlier. The person does not ask the physician outright but rather attempts to know before s/he is actually told in order to be prepared when officially given the news. Some do this by reading the caregiver or reading the relatives, carefully observing their behavior for signs of sorrow, indicating that they have already been told the bad news.

Reading the caregiver

It is a fallacy for caregivers to believe that telling is solely a verbal activity. Patients and their families search for cues regarding the nature of the news, long before the physician starts speaking. They observe the physician’s posture, facial expression, and even if he or she fiddles, hesitates or otherwise neglects to come to the point. This “forecasting” of the news enables patients to brace themselves for the telling, knowing intuitively that the news is grave, and the prognosis grim.³⁹ In Courage: The Testimony of a Cancer Patient, Barbara Creaturo recounts:

Afterward, I wait a little for the plates to be developed and to see Weissman. I do not like the expression on his face. I do not like it when he says, “I think you should discuss the results of the test with Dr. Frederickson,” and sends me away.

I awoke in a room with Dr McLean at my side. He was all choked up and looked like he had something to tell me. He didn’t have to say it; everything was so clear by his pained expression.

Dunn appeared nervous, distraught, yet extraordinarily intent upon delivering a message to me…. He studied the floor, shuffled his feet, and began talking.⁴⁰

Reading relatives responses

The responses of relatives to the patients are also read by the patients, implicitly understanding their signals, such as Christopher Reeve describes in Still Me: “Her father said, “Oh God.” That was enough. She knew immediately that my life was hanging in the balance.”⁴¹

Relatives hover, cluster, whisper; they fuss over, revealing terms of endearment that are not normal behaviors when their relative is well:

My mother came, sat on the edge of the bed as she used to do when I was little and I was sick. Smoothed my hair. Held my hand. Kissed me, the little hairs on her upper lip stained tan with nicotine brushing my mouth; her blond hair-dark roots showing-crinkley with setting, smelling of hair spray. She looked drained and her face was paler, more swollen than usual. She would drink too much tonight.

“I love you,” she said “my daughter, my child,” and put her beautiful hand with the pearly, oval nails under my chin to raise my face.

Michael, hovering.⁴²

Styles of receiving the news

When patients are forewarned, patients are braced and want to know—want to know what is wrong, want to hear the worst, and seek explanation, wanting it over with. With this confirmation, comprehension is probably increased.

Post facto construction

Occasionally the bad event occurs before the patient receives the news. Such an example is Bauby’s description of “locked-in” syndrome in The Diving Bell and the Butterfly, when he suddenly found himself paralyzed (with the exception of his left eyelid) following a stroke of the brainstem. Bauby was not informed of his prognosis, but rather he pieced together his situation by whatever he managed to overhear or surmise while he constantly monitored his body and his abilities and his disabilities:

No one had yet given me an accurate picture of my situation, and I clung to the certainty, based on bits and pieces I had overheard, that I would very quickly recover movement and speech.⁴³

Only after living with his limitations—trying to sit in a wheel chair, trying to drink or to eat, and recognizing the need to receive total care—did he begin to comprehend his predicament:

Oddly enough, the shock of the wheelchair was helpful. Things became clearer. I gave up my grandiose plans, and the friends who had built a barrier of affection around me since my catastrophe were able to talk freely. With the subject no longer taboo, we began to discuss locked-in syndrome. . . I am able to swivel my head, which is not supposed to be a part of the clinical picture. Since most victims are relegated to a vegetable existence, the evolution of the disease is not well understood. All that is known is that if the nervous system makes up its mind to start working again, it does so with the speed of a hair growing from the base of the brain. So it is likely that several years will go by before I can expect to wiggle my toes.

In fact, it is in my respiratory passages that I can hope for improvement. In the long term, I can hope to eat more normally: that is, without the help of a gastric tube. Eventually, perhaps I will be able to breathe naturally, without a respirator, and muster enough breath to make my vocal cords vibrate.

But for now, I would be the happiest of men if I could just swallow the overflow of saliva that endlessly floods my mouth.⁴⁴

Unexpected/Unprepared

The last mode of hearing bad news is the case of sudden illness or accident. Here the news is presented as a “shock” to the patient when the news may be given suddenly without warning.⁴⁵ These relatives or patients do not have the preparatory time to “brace” themselves to hear what they are about to be told or have not braced themselves for the news, not considering the worst case as a possibility. In this case, the hearing of such bad news produces a somatic response in the patient, in this instance, Betty Rollin, as emotion overwhelms cognition. The person, in these cases, often cannot hear what is said, as the body “shuts down”:

It was making him uncomfortable. “Look, percentages are just percentages. People want numbers, but. . .unreliable. . .you don’t really know until. . .but. . .” Then he stood up. Then Arthur stood up. Then I stood up. Then I fell down.

I didn’t faint, exactly, because I didn’t altogether lose consciousness. Nor did I fall far, or get hurt. The office was so small that when Arthur stood up he was only a few inches from me, so that, as I fell, he caught me. There was a small sofa in the room, and I remember being placed on it. It was too short for my legs, so Arthur hung them over the arm of the sofa, like wet towels. “I’ll be all right,” I said. But the line must have convinced no one because as soon as I said it, I began to cry, the bad, loud, gasping kind. I wanted to hold something, so I held my face. I held it hard with both hands, as if it were someone else’s.⁴⁶

Comprehension takes time and deliberate effort (italics added): “I was stunned, trying to sort out every thought in my head”⁴⁷; “I press for information”⁴⁸; “I am beginning to understand. ‘An emergency. Yes. An emergency’”⁴⁹; “At home I tried to put the pieces together, but nothing fit.”⁵⁰

Martha, because this is a man with a very borderline cardiac reserve. This is a very bad heart muscle. It's so bad that it is barely functioning, and any change—food, heat, fluid, rest, anything—is enough to change its balance. Look: We're not going to keep him around for ten years. You know that. We're not going to keep him around for five years. But maybe we can keep him around for months, or for a year. . .

I freeze. For months? For a year? I tune out. I haven't heard him.

“Okay?” he smiles at me warmly. I smile back. “I’ll go examine him now. Maybe you'd like just to sit here, have a little rest. . .” And he leaves. I rest. I examine, in depth, a paper clip. I am numb as this paper clip. Numb, deaf, dumb, blind, nothing. I don’t know nothing.⁵¹

Responses to hearing/learning

When told, people have various physical responses to hearing the news: Some respond physically, others shut down psychologically.

Somatic responses

In many descriptions, we noted the patient’s loss of hearing and difficulty in comprehension:

I could hardly speak. . . Terrified, I looked from the nurse to Bill for concurrence…I could hear the nurse speaking as she answered Bill, but her words swirled incoherently.⁵²

People report that they can hear the words the physician says, but the words “don’t register”⁵³ and are meaningless.

I stared at him in frustration, attempting to absorb his words, wondering at his cavalier manner.⁵⁴

There may be a somatic response to hearing bad news with the person aware of a strong visceral response. The person’s body may feel cold “right into the veins”⁵⁵; they may shake uncontrollably^{, 56}; others feel hot.⁵⁷ The stomach churns.⁵⁸ The heart pounds⁵⁹ or seizes up⁶⁰; the throat closes, restricting speech.⁶¹ The news may come like a physical blow to the body: “I felt a cold sensation in the pit of my stomach.⁶² Other examples include the following:

I was too stunned to respond. What was he saying? Three months? Horror churned in my stomach. No, that could not be. He had to be wrong. I couldn’t stay here in this awful place for three months.⁶³

“As she responds, my throat closes up and my eyes fill with tears. . ..” The blood rushes past my ears, sounding like a train. I press for more information.”⁶⁴

My heart seized up. . . it shook me deeply. I tried to get him to talk normally.⁶⁵

The clammy feeling in the pit of my stomach now spread throughout my body.⁶⁶

The body often does not necessarily reveal this strong response and instead may become very still as the mind rapidly moves, trying to make sense. Consequently, the person looks like he or she is taking the news very calmly. Examples include:

I was still sitting on the side of the bed, battling with my thoughts.⁶⁷

Lying there, I was overcome with raw terror as my mind tried to comprehend how dramatically fate turned my life around in a matter of days.⁶⁸

A distancing of the body, time, or place may be felt. My head sank back into my pillows as I tried to stifle my sudden urge to gag.⁶⁹

I feel completely desolate. I watch the construction workers across the street and the people walking by. It’s as if I am watching them from far off, as if we are not in the same universe. I feel angry that I have been robbed of ordinary life, of the world in which these people live.⁷⁰

Cognitively, the shock makes the person feel separated from ongoing everyday life: “I seem to float above it all”⁷¹; “This diagnosis suddenly turned me upside down”,⁷² and “When I wasn’t looking, the world had turned upside down.”⁷³ The shocked person may speak and respond but feel removed from the setting, hearing themselves speak, feeling their body, trying to be calm as in the following quotes, the first from Christopher Reeve, and the second from Gilda Radner’s in It’s Always Something:

. . . she felt like she was being knocked backwards with each new thing he said: I’d broken the top two cervical vertebrae (C1 and C2), I was having trouble breathing, I was on a respirator. After each new piece of information, Dana took a deep breath and said, “Okay, okay, okay.” She felt as if she were being punched repeatedly and had to prepare herself each time for the next blow.⁷⁴

We both looked up into this doctor’s eyes as he said, very calmly, “We’ve discovered there is a malignancy.” A flush went through my body and out of my mouth came a sound like a guttural animal cry. . . . (Gene) still remembers the sound I made because it was so primitive, so emotional, like somebody stabbing a knife into me. . . . I think the internist went on to say that the malignancy was confirmed by the CAT scan and the analysis of the fluid from my belly. Surgery would have to be done as soon as possible. When he left the room, I grabbed Gene’s face in my hands and sobbed.⁷⁵

The similarities between the accounts by Betty Rollin and Gilda Radner are striking: Both report only partially being able to hear and not being able to comprehend fully what the physician was saying; both report a physical response (bodily flush, head “hot and filled with air”), of crying out, reaching for physical contact, and then, of sobbing.⁷⁶

Grappling

All of these accounts state that the individuals were unable to cognitively process the news immediately—both the diagnosis and what it implies. Murphy succinctly sums up this everyday knowledge in the lay community:

It is difficult now to recollect my state of mind at the time, but I took the diagnosis very calmly. Most people neither rage nor weep on hearing such dismal tidings, nor do they become despondent or suicidal. Many are unable to assimilate the full meaning all at once and may sit dazed for hours until the heavy weight of truth finally sinks in. It took time for me to realize the significance of what I had heard…⁷⁷

Coming to know; striving to accept

Thus, comprehending, knowing, and understanding come relatively slowly, and the impending changes are not incorporated into one’s body image immediately. As shown below in this excerpt from Klein’s Slow Dance: A Story of Stroke, Love and Disability, even when the physician’s explanation was apparently exemplary, the information was incorporated very slowly, and had to be repeated many times:

I didn’t know I was paralyzed. I remember being surprised every time Michael told me I couldn’t walk. It was shocking to hear the word quadriplegic—it was a word about other people surely, not me. When I heard things like this, I thought of them as temporary. They would go away as quickly as they came. It’s as if the paralysis did not penetrate my inner being—I was blissfully stupid.⁷⁸

Even when suspecting bad news, reading cues, and then being told, there may be a slow realizing:

The baby on one side does not move in pregnancy.

Suspecting something is wrong with the baby—Inside, I am tight with anxiety . . . .The room is hushed. Instruments click. People’s faces are serious. I peer from my flat-on-the-back positions, around Trevor’s body at my side. “What’s wrong? What’s going on?” . . . . For a moment I see her little face. “Oh, no!” My cry is weak. “She’s got Down syndrome. Look. Oh Trevor, Down syndrome.”

“No, she’s fine, love”. . . .

I shake my head. Now I know what was wrong.

The minutes pass. . ., Finally our family doctor advances cautiously, pulling off her gloves. “I’m afraid it looks as though your little daughter has Down syndrome.” She is gentle and quiet, her eyes full of compassion.

Trevor and I stare at each other in shock. . . . .Trevor’s tears fall on my unmoving face.

Then with slow realizing: “crying raging, carrying on. At night I cry and cry until I am empty. Finally I sleep.”⁷⁹

Being told: the impact of hearing the news

Metaphors of hearing

Exploring and interpreting metaphors of hearing bad news enables us to understand further the “impact” of such news on the self. Language, when accepted literally, does not readily reveal or communicate some experiences in their entirety. The reading of descriptions of life-altering, “bad” news, proved to be one such experience for which the severity of the impact was communicated to others metaphorically. Thus in-depth understanding of the experience could be achieved through analysis of these metaphors. For instance, although “hearing bad news” might usually be considered to result in intellectual and emotional actions, many metaphors revealed the news was perceived bodily with strong physical responses. Other metaphors indicated the struggle and effort required to understand the news, and how comprehension took considerable time. Metaphors were interpreted as expressions of danger and harm, causing crisis and alarm.

Feelings of unreality: Unable to comprehend

The shock of hearing bad news, even when the news is expected to be bad, prevents the person from comprehending the news. The mind ‘shuts’ down—the opposite to the hyper alertness that occurs with panic states:

I took the diagnosis very calmly. . . . It took time for me to realize the significance of what I heard, enough time for my psychic defense system to become mobilized and throw up a wall between me and an unpalatable reality. I do remember that I clutched at straws.⁸⁰

Danger and harm

Connotations of the “badness” of the news are revealed by metaphors of darkness, danger, and harm. Risk for physical injury is recognized, even to the extent of being swallowed up or consumed within the nightmare of the news: “Horror churned in my stomach.”⁸¹ Others reported feeling “stunned with horror” but feel they have actually been assaulted or harmed: “BANG! There is a loaded gun. CANCER. This time the gun is pointing at me.”⁸²

Physical force

There are numerous metaphors of receiving bad news as a physical force. It is interesting that news of the body is often first felt by the body and expressed by sensations of the body. The words themselves have a physical power: “the words stung me.” Christopher Reeve’s wife uses an overt comparison of force upon hearing the news of his injury in that “she felt like she was being knocked backwards with each new thing he said.”⁸³ Metaphorical expressions reveal the weight, suddenness, and power of that force, of being “hit”: “. . . the weight of the situation hit home. I would be losing 25% of my breast as well as some lymph nodes.⁸⁴

Sinking in

Described as a weight or physical force, the news may not be understood by mind or emotions until the body “takes it in.” In order for the mind to absorb the news, the body must first absorb it, or as commonly stated, the news must “sink in.” Even when the news is felt as a blow, there may be conscious awareness that emotionally or intellectually, it has not yet “hit home.” Somehow the news has to “get inside” to disrupt the bliss of ignorance: “The dismal truth filtered through.” What to do with such a blow? . . . At a conscious level neither of us could take in what was happening. ⁸⁵ Numerous factors prevented the news from penetrating the body: VanBuskirk remarks on the “blissful oblivion [of Demerol] after hearing news of cancer.”⁸⁶ Klein faults his lack of knowledge: “I couldn’t take it in. I didn’t know the anatomy.”⁸⁷ In everyday language, news is digested, that is, it is taken in slowly, bit by bit, over time. This is a slow process: When it is a sudden onset, time is often needed for the news to be understood. Van Tighem’s younger sister notes that “the words do not sink in at first.”⁸⁸ Callahan describes being told the “bad news” of his paralysis and initially he did not feel the weight of the news or words, only over time:

You’re paralyzed.

For how long?

Probably for life.

I did not feel the weight of those words at that time. I heard them, all right; but they held no more significance than hello or good-bye. . . Only later did his words sink in.⁸⁹

Feelings of vulnerability

Different types of bad news were perceived as a risk for self and the body. But there is little protection or defense:

I have been robbed of ordinary life.⁹⁰

I am desperately defending myself, calling up winds to blow away the cold in my veins so as to drive away the cramp in my body.⁹¹

We know what was coming was the moment of truth. And there would be absolutely no way that anything could protect us if the news was bad.⁹²

Words that echo and are felt: News is given through language, but these words are not neutral. Words are not just “heard” but also “felt”: their impact is both physical and emotional. Baier felt the words stung her with alarm.⁹³ Feelings of the caregiver are relayed in the bad news and Michael Korda relates in his book, Man to Man: Surviving Prostate Cancer: “I could hear fear in her voice, like an electric current between us. People who have been married long enough hear feelings in each other’s voices, even in their silences.”⁹⁴ They describe the news as “echoed”: “The words echoed in my mind as she talked to me. Unfortunately, the results of the biopsy were positive.”⁹⁵ Both spoken and unspoken words have metaphorical meanings. Silence becomes heavy; words are lost:

“I have cancer.” There. For the first time, I have said aloud the phrase that would soon become familiar when talking to friends or with doctors, technicians, and nurses. “I have cancer.” Very soon I would be able to speak those words without feeling self-conscious about them, as if they represented a perfectly ordinary statement of fact. For the moment, they created a kind of dead, heavy silence, which neither one of us seemed eager to break.⁹⁶

I am at loss for words, not knowing how to talk to someone so messed up.⁹⁷

Body / Mind

Other metaphors revealed an incongruity between the body and mind: thoughts were often rapid while the body was slowed or even stopped. Or else the body continued with its required tasks although separate from thoughts and emotions:

It was not a choice but an automatic shifting of gears, a tacit agreement between my body and my brain. I thought that time had tapped me on the shoulder.⁹⁸

I left Dr. G.’s office and began the long, lonely walk to the parkade, my mind whirling.⁹⁹

I was still sitting on the side of the bed, battling with my thoughts.¹⁰⁰

Struggling to understand

It takes effort to recognize something incomprehensible and sudden. At first, the news may not “sink” in or “hit” one. There may be a physical effort as in trying to grasp the news, trying to come to grips with the news, or even fighting “to make sense of what was being said.”¹⁰¹ For others, the effort was in the thoughts, as they tried to wrap their mind around the news, or struggled with the news:

That was it. The test showed malignancy. With those words, I was left to struggle with the news of cancer.¹⁰²

Daughter Naomi—I was just numb when he said that. The reality didn't hit; I couldn’t make myself think it was going to happen.¹⁰³

For others, the news was not given directly. For example, Bauby realized gradually that he was paralyzed and not expected to recover. He uses the metaphor of a picture that is given, as if the information is a gift that one can take or refuse:

No one had given me an accurate picture of my situation, and I clung to the certainty, based on bits and pieces I had overheard, that I would very quickly recover movement and speech.¹⁰⁴

Conclusions

Here, I have tried to add the missing piece in the process of “breaking bad news” and to address the contentious issue between physicians who insist they “have told” and patients who say they “have not” been told. When one explores the process of hearing bad news apart from the process of breaking bad news, this inconsistency becomes very clear. When everything is considered, it is astonishing that studies using a cognitive framework have not previously been conducted. Thus, the most important findings from this study are these:

Being told is only a part of the patient’s process of knowing

The person seeks for external cues about “what is coming” when he or she is about to be told, including using all of the clues that are available in order to forecast the nature of the news. The patient and relatives analyze the posture of the approaching physician, read the face of the physician (“looked grave”); they seek for indices of some sense of severity, not necessarily in the physician’s words, but in the preamble to the actual telling and in the tone of the physician’s voice, enabling them to “brace” for the actual news. Surprisingly, patients may prefer to find out themselves, even devising means to obtain this information outside the process of being formally informed. Patients read cues from others, from the behavioral changes of relatives, and it is such signals that set off warning bells; patients report being treated differently, “as special,” or being treated “like a baby.” These are valid and real indicators of bad news.

Bad news may be perceived as a physical force to the self

When the bad news is actually delivered, even though it may be expected, the news itself is often perceived as a physical force, equivalent to an actual blow or a punch. Patients receiving the news may actually be unable to hear the physician’s words or hear the words and be unable to comprehend what is being said. Patients may physically collapse, faint, or go quickly into shock, and it is probably because of these types of responses that physicians advise patients to bring someone to the consultation, either a relative of the patient or a significant other, or call a nurse in to assist with the patient should this occur. If the relatives are present, they may also be useful to reiterate what was said to the patient. However, in the case of relatives or a significant other, the physician may not be considering that the support person may also have difficulty in comprehending the news.

Hearing and comprehension do not necessarily occur instantaneously nor simultaneously with telling

Even for those who are able to hear the words, it is known that it takes time for the words to sink in. And, once the works have registered, the meaning or the ramifications of the news may take even longer to be realized.

Bad news is not always contained in the physician’s statement, particularly in the case of chronic illness or when the diagnostic process requires extensive investigation. The patient recognizes the seriousness of the condition from other sources, such as the patient’s prior knowledge of disease, and the seriousness of symptoms experienced or other bodily clues available. In the case of hereditary disease, such as Cohen’s descriptions of the onset of multiple sclerosis and the descriptions of his grandmother’s and father’s manifestation of the disease, the trajectory of the illness is already a dreaded familiarity.¹⁰⁵

Neither is the physician the sole source of information, particularly since information is becoming so readily and instantly available on the Internet, which also gives access to more ‘active’ sources of information, such as chat rooms, blogs, and self-help groups. These are in addition to the already available help lines, information brochures, popular literature in magazines, television talk shows, and documentaries. Furthermore, if the disease is relatively common, such as breast cancer, most women, for instance, know relatives or friends who have been through the treatment process and are aware of treatment options, the experiences and side effects of treatment, as well as the prognosis. In these cases, being told is putting the treatment into the context of the self; the physician’s news, even when breast cancer is negative, may not be accepted.¹⁰⁶ A physician’s delivery may be so tentative, “We will check you again in six months,” that the woman may continue to believe that she has cancer—the physician simply has not found it yet.

Medical research on breaking bad news has been unproductive. In this article, I have attempted to illustrate that the key to delivering bad news is not some formula for a perfect delivery; we must also consider patient comprehension. Patient comprehension does not occur instantaneously, and the news, no matter how kindly delivered, causes profound ramifications and adjustments to the person’s sense of self.