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Caring for Patients at the End of LifeFacing an Uncertain Future Together$

Timothy Quill

Print publication date: 2001

Print ISBN-13: 9780195139402

Published to Oxford Scholarship Online: November 2011

DOI: 10.1093/acprof:oso/9780195139402.001.0001

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Delivering Bad News

Delivering Bad News

Chapter:
(p.78) 6 Delivering Bad News
Source:
Caring for Patients at the End of Life
Author(s):

Timothy E. Quill (Contributor Webpage)

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780195139402.003.0007

Abstract and Keywords

This chapter examines the issue of delivering “bad news” in the medical profession. It relates the author's experience in delivering the news to a devout Christian, African American woman that she tested positive for HIV infection. The chapter explains the two elements in successful “bad news” interviews. These are creating a therapeutic dialogue based on carefully listening to the patient's experience, beliefs, and reactions, and imparting guidance and information tailored to the their circumstances and needs.

Keywords:   bad news, medical profession, HIV infection, therapeutic dialogue, medical guidance

MRS. JOHNSON: “I feel as if I've been robbed of a future.”

A 37 year-old man who used intravenous drugs was diagnosed with human immunodeficiency virus (HIV). He and his wife were estranged and had not had sexual relations in three years. His wife, Mrs. Johnson, was an independent, family-oriented, devoutly Christian, African-American woman with three children. She worked as a nurses aide. In the past, she had a prolactin-secreting pituitary adenoma for which she had reluctantly and intermittently accepted medical treatment (bromocriptine). She generally preferred to be treated exclusively by her faith in God, taking the medication only when her prolactin level became so elevated that her breasts released large amounts of milk. She and I had known each other for six years, and our recurrent complex discussions resulted in a close relationship wherein each of our perspectives was understood and respected by the other.

When her husband was diagnosed with HIV, Mrs. Johnson came to see me to discuss her situation and assess her risk. We discussed the available diagnostic tests and the difference between HIV (even without treatment, patients can carry the virus for many years without major medical problems) and AIDS (a more advanced state of illness characterized by immunologic vulnerability to unusual infections). She understood the distinction, but she (p.79) continued to equate any infection with AIDS. She decided she wanted to be tested, but when asked what she would do if her test was positive, she responded, “I don't know, but I don't think God would do this to me.” The conversation left me unnerved, but we went ahead with the test and planned a follow-up visit to discuss the results.

The results showed that she was HIV infected. I felt sad for her as a person, and was also unsettled as I realized for the first time that the epidemic was truly reaching all walks of society. I also began to dread our meeting where I would deliver the bad news. I was uncertain how she would respond, and feared the results could shake the foundations of her faith (one of her major strengths) and her sense of who she was. What follows is an unedited transcript of the first minutes of our meeting when the bad news was shared.

MRS. JOHNSON:

  • Is it bad?
  • DR. QUILL:

  • I'm afraid it is.
  • MRS. JOHNSON:

  • Oh no, Dr Quill. Oh my God!
  • DR. QUILL:

  • I was shocked too.
  • MRS. JOHNSON:

  • Oh God. Oh Lord have mercy. Oh God, don't tell me that. Oh Lord have mercy. Oh my God. Oh my God, no, Dr. Quill. Oh God. Oh no. Please don't do it again. Please don't tett me that. Oh my God. Oh my children. Oh Lord have mercy. Oh God, why did He do this to me? Why did He do this to me? Why did He do this to me, Dr. Quitt? Oh Lord have mercy. Oh my God, Jesus.
  • DR. QUILL:

  • You're still all right at this point, okay.
  • MRS. JOHNSON:

  • You don't know how long I've had it, Dr. Quill?
  • DR. QUILL:

  • I don't know.
  • MRS. JOHNSON:

  • I can't sit. (She paces around the room.)
  • DR. QUILL:

  • It's okay.
  • MRS. JOHNSON:

  • Why did he do this to me? Why? What have I done to him? Why does he do this to me? Why? Why? Why? Oh Lord. What am I going to do with all of my children? I won't be able to see my grandchildren. I just had another grandbaby. I won't ever be able to see … I won't live to see the baby. I won't be able to get up off my chair. Oh, Dr. Quill, I don't know what to do. Oh God, I don't know what to do. My son-in-law is not going to let the kids come over.
  • DR. QUILL:

  • First thing we have to do is learn as much as we can about it, because right now you are okay.
  • MRS. JOHNSON:

  • I don't even have a future. Everything I know is that you gonna die anytime. What is there to do? What if I'm a walking time bomb? People will be scared to even touch me or say anything to me.
  • DR. QUILL:

  • No, that's not so.
  • MRS. JOHNSON:

  • Yes they will, cause I feel that way about people. You don't know what to say to them and what to do. Oh God.
  • DR. QUILL:

  • What we have to do is learn some things about it. Even though it's scary, it may not be as scary as you think. Okay?
  • MRS. JOHNSON:

  • (p.80) Oh my God. Oh my God. I hate him. I hate him. I hate the ground he walks on. I hate him, Dr. Quill. I hate him. He gave this to me. I hate him. He took my life away from me. I have been robbed. I feel as if I have been robbed of a future. I don't have nothing.
  • DR. QUILL:

  • There is a future for you.
  • MRS. JOHNSON:

  • They don't even have a cure for me.
  • DR. QUILL:

  • There's a lot of work going on right now, and you can have the infection for a long time before you get sick. There is a lot of research going on.
  • MRS. JOHNSON:

  • I read about it. I have a friend with it. I went over to the university … Since you told him [her husband] he had AIDS, he has been at my house and I feel so sorry for him. I was being nice to him. Oh my God, my God. It just doesn't pay to be nice. It doesn't. What do you get out of it?
  • DR. QUILL:

  • Neither you nor he knew that there was a risk back then.
  • MRS. JOHNSON:

  • Another cross to bear.
  • DR. QUILL:

  • You never did anything wrong.
  • MRS. JOHNSON:

  • What am I going to tell my children when they are old enough to tell them?
  • DR. QUILL:

  • Before you tell them anything, you are going to learn a lot about this.
  • MRS. JOHNSON:

  • I can't go home. I can't even stay here. I'm so scared. Oh my God. I knew that you were going to tell me this. I always liked you. I didn't want you to tell me this. Oh God. I don't know if I can deal with this. I don't know, Dr. Quill, if I can deal with this.
  • DR. QUILL:

  • You've worked through this before. It's going to be hard, but it may not be as bad as you think. Okay? I think what you have to do …
  • MRS. JOHNSON:

  • I got my church, Dr. Quill. I can't let them see me like that. I can't do it. I would rather … because I can't let our church see me like this. They mean a lot to me. Oh, Dr. Quill, and my daughter. Oh, I won't see my daughter and my baby.
  • DR. QUILL:

  • You are still the same person. Okay?
  • MRS. JOHNSON:

  • Why is He doing this to me?
  • DR. QUILL:

  • I don't know. You are still the same person. What you have to do is eventually learn as much as you can about this. The odds are that you are going to stay healthy for a long time. Okay? You are still very healthy right now.
  • MRS. JOHNSON:

  • What you telling me? I still have a chance to beat it? Can I beat it?
  • DR. QUILL:

  • I think that is possible.
  • MRS. JOHNSON:

  • How can you be sure when you don't even know what the cure is for it?
  • DR. QUILL:

  • A couple of things, okay? We don't think you've had this very long; a couple of years at the most. All right. A lot of people believe that the virus can stay around for many years before it produces many problems. Sometimes six or eight years. There is a lot of research going on now to try to find ways to treat it.
  • MRS. JOHNSON:

  • Oh God, Lord Jesus.
  • DR. QUILL:

  • You may have a lot of time before we have to deal with this. I think the first thing we have to do is probably get some further blood tests. We should, because it's such a surprise for you and for me that you have it, even though we think we know how you got it. We maybe should repeat it to be a hundred percent, a thousand percent sure, (p.81) even though they repeat it once. I think that's wise to do, because the only way that you could have gotten it is from your husband. I think we ought to repeat it even though we know that it is probably true.
  • MRS. JOHNSON:

  • I don't know if I can live with myself … in my bed right now. I don't like him, Dr. Quill. I don't even want to stand by him. I won't even stay with him. I won't. Why must I pay for his sins? Why?
  • DR. QUILL:

  • There's nothing fair about it.
  • MRS. JOHNSON:

  • My children.
  • DR. QUILL:

  • It's very scary. Also, there are a lot of things we can do.
  • MRS. JOHNSON:

  • Oh Lord have mercy. Then I have the pituitary thing.
  • DR. QUILL:

  • Like your pituitary tumor, it has been there for years. It doesn't …
  • MRS. JOHNSON:

  • It's not the same.
  • DR. QUILL:

  • No, it's not the same thing. If the tumor gets worse, we know what the treatment is.
  • MRS. JOHNSON:

  • It's not the same. It can't be cured. You talking about something they never came up with, never came up with a cure for. I've got nothing. All they can do is just treat whatever comes along, like a cold, or pneumonia, stuff like that—that's all.
  • DR. QUILL:

  • That's right. But right now there are millions and millions of dollars being poured into research, and that's what we have to hope for.
  • MRS. JOHNSON:

  • It doesn't make me feel good.
  • DR. QUILL:

  • I wish I had something more clear to tell you, but I think there are a lot of folks who are in the same shoes that you're in and they are all hoping. They are figuring out ways to cope. That's what we have to figure out.
  • MRS. JOHNSON:

  • Dr. Quill, will you still be my doctor?
  • DR. QUILL:

  • Absolutely, I will.
  • MRS. JOHNSON:

  • You promise?
  • DR. QUILL:

  • Absolutely. We'll meet very regularly so we know what's going on.
  • MRS. JOHNSON:

  • Okay, all right. I'm so scared. I don't want to die. I don't want to die, Dr. Quill. Not yet. I know I got to die, but I don't want to die.
  • DR. QUILL:

  • We've got to think about a couple of things.…
  • We both felt overwhelmed by the news and the encounter. With great difficulty, I allowed her rage and terror to be expressed, yet I also clumsily attempted to find some boundaries to her experience. I was concerned that she would lose the ability to cope, and I needed to be reassured before she left the office that she envisioned a basic plan. It was also not completely clear whether it was her or me that I was trying to protect. Through the intense emotional expression, she raised several basic questions that needed to be addressed: (1) Am I still the same person? (2) When am I going to die? (3) How contagious (repulsive) am I? (4) Will you still be my doctor? (Will I be alone?) (5) How can I tell my family, friends, and church? Though these questions were by no means simple, struggling to answer them began to give some definition to her problem.

    (p.82) My struggle to respond adequately caused me to reflect on the process of delivering bad news. In spite of the fact that all clinicians regularly conduct interviews where bad news is shared, there is little descriptive medical literature,1, 2, 3, 4, 5, 6, 7 even less research,8 and almost no formal training in medical school or residency about how to do it.9 Although the medical literature is limited, useful information can be extracted from psychology literature describing responses to overwhelming stress10, 11, 12 and crisis intervention.13, 14 Using this literature, combined with videotape material and role-playing of the actual delivery of bad news, I have conducted experiential workshops with expert clinicians and trainees to learn about their beliefs and strategies. The schema presented herein represent a synthesis of these data, incorporating my own clinical experience both as a general internist and a palliative care physician. This chapter emphasizes the initial delivery of bad news, when a patient is first coming to grips with a new problem, rather than needs and strategies that evolve over time.

    Background

    Bad news can be defined as anything that drastically and negatively alters one s view of oneself as a person, and of one's future. An initial diagnosis of HIV or of a potentially lethal cancer certainly qualifies for most individuals. Even though effective treatments may be available, ones self-image as a healthy person is clearly threatened. Because of our faith in the power of medical treatments to thwart disease, clinicians are often tempted to focus immediately on the efficacy of treatment, without exploring the devastation that such news entails. Yet our job must begin by responding to the personal meaning of the loss and its attendant emotions, and then eventually connecting the experience with the potential hope of effective treatment and/or palliation. Although I struggled repeatedly to do this in the interview with Mrs. Johnson, my initial efforts to find boundaries and offer hope were premature and ineffective. My responses probably stemmed in part from my own difficulty in tolerating such painful emotions associated with hopelessness (“I feel as if I have been robbed of a future. I don't have nothing.”), as well as my desire to help Mrs. Johnson to feel better. Eventually, after she had expressed her devastation more fully, Mrs. Johnson was able to begin to hear some very simple versions of the fact that treatment was available, and that the news was not quite as bad as she had thought.

    Patients bring to a discussion their own set of experiences and preconceived notions about a particular illness with which they are faced, giving them a unique frame of reference. For Mrs. Johnson, a diagnosis of HIV was a death (p.83) sentence (“I won't live to see the baby.”) associated with progressive debility (“I won't be able to get up off the chair”) and social ostracism (“My son-in-law is not going to let the kids come over.”). It takes time and energy for me as a clinician to first understand these beliefs more fully and then respond to them in ways that are both honest and hopeful. My premature efforts at reassurance, though at times awkward and ineffective (“It may not be as bad as you think.” … “You are still the same person.”… “The odds are you are going to stay healthy for a long time.”) may have been useful and important in that they planted seeds of hope that eventually could lead to increased understanding. They also demonstrated that my view of this disease was not the same as hers, and that the two could perhaps be reconciled in the future.

    Sometimes a patient is devastated by what seems to the clinician to be a minor diagnosis, such as mild high blood pressure. When a patient responds to a new diagnosis with strong emotion, the clinician might ask, “What is the most frightening part?” or “What experiences have you had with high blood pressure in the past?” before offering reassurance. Perhaps high blood pressure is associated with a devastating stroke in one of the patients parents, or with kidney failure in a close friend. Once this experience has been explored and understood, the clinician can begin to reassure the patient that blood pressure is usually readily responsive to treatment, and if treated, complications can usually be avoided. Reassurance can thus be tailored to the patients particular fears. Other times, a clinician may learn that a patient is in the midst of major marital problems and sees the diagnosis as emblematic of the “pressures” he or she have been under at home and at work. Sorting out this complex mixture of psychosocial and biomedical components of the patients blood pressure is central to its eventual treatment, but understanding what contributes to the initial response to bad news is the first step. Since the meaning of any bad news is highly individual, the initial exploratory interview is very important to set the proper foundation for personalized treatment

    Two critical elements are present in successful bad news interviews: (1) creating a therapeutic dialogue based on carefully listening to the patients experience, beliefs, and reactions, and (2) imparting guidance and information tailored to the patient's circumstances and needs. Sometimes a new, medically important diagnosis does not even qualify as bad news to a particular patient in the sense that he or she is not threatened as a person; nor does his or her future feel threatened. For example, perhaps everyone in a patient s family has hypertension, and all have been treated without complication. Learning that one has high blood pressure might be expected, and lead directly to asking the clinician for a recommendation, resulting in a simple transaction about behavioral and pharmacological interventions. Thus, each bad news interview must begin with careful observation of verbal and nonverbal (p.84) cues that may suggest important personal meanings a new diagnosis might have for the patient.

    Medical diagnoses, especially those that are genuinely life threatening, can transform a person s self-concept from that of someone who is well with a full future to that of someone who is sick with a shortened life span. This capacity for bad news to powerfully and, initially at least, negatively transform a person s self-image is one of the reasons it is so difficult to do. Even when patients know that the news is not going to be good, later they can often recall the moment when they got the final diagnosis, including the exact wording. In Mrs. Johnsons case, the devastation was inherent in the news. A different technique of bad news delivery would not have made it less emotionally charged. My search to find some way to reassure her did not lessen the loss. Perhaps it might have been better to simply explore her experience in all its enormity and try to empathize with her. Later, after she had been more fully heard and acknowledged, she was more receptive to reassurance. (“It's very scary. Also, there are a lot of things we can do.”) She would probably not have been able to listen to the “things we can do” earlier, and it might have been perceived as not listening to or minimizing her experience.

    There are barriers on all sides that impede the delivery of bad news. Patients do not necessarily want to hear news that has the potential to adversely affect them as persons, and physicians do not want the power that their knowledge and words can have under these circumstances. In hopes of softening the impact, physicians sometimes use ambiguous language subject to misinterpretation—such as the word “tumor” rather than “cancer.” Furthermore, physicians are trained to treat diseases and tend to be enthusiastic about promising treatments, but they are less well prepared for handling associated emotions and integrating a person s beliefs and experiences into a treatment plan. With increasing pressure to shorten hospital stays and reduce treatment plans according to predetermined algorithms that are disease-driven, there is even less time to allow patients to personally integrate bad news before embarking on treatment. Reimbursement plans do not cover the time needed to meet with a patient and family, to fully consider the diagnosis, and to make sure decisions are made based on a full understanding of options. Whether they are covered by a reimbursement plan or not, these exchanges remain vital to high-quality patient care.

    Although these barriers make the delivery of bad news a challenging endeavor, systematic approaches have been developed to aid clinicians who understand the fundamental importance of this process to patient and family well-being. In the next section, I explore some of crucial elements in the successful delivery of bad news, and then I offer a practical approach to the actual interview. This will be followed by outcomes that might be expected from an initial interview that is conducted successfully.

    (p.85) Advance Preparation

    Advance knowledge about a patients strengths, weaknesses, and coping style can be invaluable in deciding how to present bad news. Mrs. Johnsons spiritual beliefs, support from her children, and fierce independence were clearly her strengths. Her previous fearful, ambivalent feelings and denial about medical diagnosis and treatment of her pituitary adenoma were potential sources of concern. Our discussions concerning her knowledge and beliefs about HIV allowed her to begin anticipatory grief work. They also allowed me, as her physician, to begin to understand the potential meaning of the news to her. Her view regarding what she would do if infected (“I don't know, but I don't think God would do this to me”) was ominous, and I should probably have explored it in more detail before delivering the diagnosis.

    The physician is usually the first to get any kind of medical news. Particularly if there has been a close physician-patient relationship in the past, the physician may have to grieve him- or herself before meeting with the patient and family. My own sad feelings over Mrs. Johnsons condition prompted me to seek out one of my close colleagues and explore my own reactions to the news before proceeding. It was useful to fully experience my own grief before I encountered hers. It is also incumbent on the physician to make sure that the information about a diagnosis is accurate and that he or she is knowledgeable about its medical implications, including prognosis and further treatment options. If a patient has a condition with which the physician is unfamiliar, the physician must learn enough about it to be informative and to be able to answer general questions about prognosis and therapeutic options in this initial meeting.

    Bad news, particularly that which has the potential to be devastating to the patient, should be delivered in a face-to-face encounter in a private setting, with time set aside to allow for questions. The patient should be offered the option of having close family members attend the meeting, both for support and to serve as an added set of eyes and ears. Delivering bad news is generally not a task to be delegated or done in an indirect way, such as over the phone. However, there may be exceptional circumstances, such as an unanticipated new finding, that dictate some of the news be disclosed in this way. Although Mrs. Johnson did not want to come to the office to hear the news, the significant medical risk posed by the HIV diagnosis and the meaning she attached to the diagnosis made a face-to-face appointment mandatory. I encouraged her to bring along a close family member, or perhaps someone from her church, but she insisted on coming alone so she could hear the news privately, and then decide how to share it. Advance plans about how and when to share the news learned at a meeting are helpful, as are considerations of how (p.86) directly or indirectly to involve significant others. Since Mrs. Johnson doubted that God would do this to her, we might have been well-served by a hypothetical conversation about what it might mean to her spiritually if she had HIV. (“What would it mean to you if the test is abnormal?”) Of course, even such a discussion does not guarantee that the subsequent bad news conversation will be any less devastating.

    Frequently, questions are raised by physicians or families as to whether a patient is medically or psychologically strong enough to handle bad news.5, 6 Although there may be exceptional circumstances under which delivering bad news directly to the patient should be delayed or avoided, they require careful analysis of the question, Who is really being protected? For example, in some Hispanic and Russian cultures, bad news is frequently shared primarily with the family and not the patient. Contrary to the usual approach in the United States, where a premium is placed on patient autonomy, in these and other cultures it is considered cruel and inappropriate to tell a patient about bad news directly. Yet if the patient is competent, even if he or she is from a culture where patients are bad not told diagnoses, some advance assessment of the patient's preferences should be made. A patients direct request to be told the diagnosis usually creates an obligation to do so that takes precedence over a family members or a physicians fear of doing the patient harm, unless the clinical evidence suggesting possible harm is very persuasive. In other words, it is generally not the physician s role to protect a patient from the truth about his or her condition or from the ensuing grief. Exploring the family's fears and concerns, and discussing the necessity of responding truthfully to a patient s request to be told the diagnosis, may allow the family to better prepare for the moment their loved one is told. This discussion may be justified in the interest of overall patient and family well-being, provided the patient s condition is not likely to worsen significantly in the meantime.

    Delivering the News

    Robert Buckman developed a protocol for the delivery of bad news. It is summarized, with some modifications, in Table 6–1.7 In describing each of these steps, I will outline some general concepts, then illustrate them with examples drawn from Mrs. Johnsons interview.

    Greet and Calibrate

    Careful attention should be given to the setting of a bad news interview. Whenever possible, such encounters should be made in a private setting. Ample time should be set aside for an in-depth exploration of whatever emerges in (p.87)

    TABLE 6–1. Initial Steps in Delivering Bad News

    1. Greet and calibrate

    2. Find out how much the patient knows

    3. Find out how much the patient wants to know

    4. Share information tailored to the individual

    5. Respond to the patients feelings

    6. Make a plan and follow through

    the conversation. Those family members whom the patient has brought and any clinicians who are present, should be given room to sit down, so that all are seated at the same level. As with all such encounters, the interview should begin with introductions of everyone present. The patient's immediate condition is an important starting point. If the patient is in severe pain or is overwhelmed with anxiety at the outset of the encounter, then these conditions should be explored and addressed before proceeding with the delivery of the diagnosis.

    Some medical circumstances are so pressing that decisions must be made immediately. A patient who has suffered an acute heart attack cannot delay thrombolytic therapy or angioplasty without serious consequences. In this instance, some steps of the protocol must be compressed, and the physician must progress to the treatment phase more rapidly than would otherwise be ideal. Once the patient has stabilized, the clinician should revisit those steps that were given short shrift to make sure that the impact of the diagnosis on the patient has been understood, and that the patient is fully informed about the medical aspects of the decisions that have been made.

    Mrs. Johnson and I met at a scheduled time in a private setting. Although we greeted as we usually did—by shaking hands—and sat down together, she began with a direct question (“Is it bad?”). She knew the answer by looking at my face. Therefore, we were into the core of the bad news from the outset, based on her lead rather than mine. Delaying this exchange until we had had more time to get settled would have been inappropriate. On the other hand, having a physician jump right into such a conversation before the patient has given a clear indication that he or she is ready is also inappropriate, and might even be considered cruel. Thus, unless the patient requests the news, it is generally better to begin with a few minutes of exploration about how the patient and family have fared since the last visit. This is more than small talk. It allows the clinician, patient, and family a few minutes to get adjusted to one another, and to get emotionally prepared for the meeting. Those present can usually detect that the news is not good from the appearance and other nonverbal cues of the clinician (and there would be no need for such an adjustment period if (p.88) the news were good). Nevertheless, there is an important difference between knowing that the news is bad and actually hearing it.

    Find out How Much the Patient Knows, and How Much the Patient Wants to Know

    An initial assessment of what the patient has been told or figured out, and her readiness to hear the news, are suggested initial steps. Mrs. Johnson requested the results as soon as I walked into the room, and she could read the answer on my face. Such explicit requests for information should be responded to directly, using clear, simple language that is comprehensible to the patient. Ideally, the specific language used has been defined in advance—perhaps when the purpose of the test was being explored. The complex associations of meaning that a person may have for words such as tumor, cancer, malignancy, HIV infection, and AIDS mean that mutual understanding is not a certainty at this point.

    Other patients do not want to hear the news right away, or perhaps would rather not hear it at all. With these patients, time initially spent exploring how they are feeling, how they have fared since the test was taken, and what thoughts and feelings they have had about the test and about getting the results is extremely important. It allows the patient to control the flow of information and to have time to settle and brace him- or herself before hearing the news. It also helps the physician understand more about the patient s coping style and about the potential impact the news will have once delivered. Unless a patient specifically requests not to hear the news (a request that itself needs in-depth exploration and understanding), the physician eventually should deliver the news in a clear, sensitive manner. If the clinician gets the feeling that the time is right, he or she might signal the patient by asking, “Are you ready to hear about the test results?” Again, the patient probably knows that if the news were good, it would have been delivered quickly.

    Share Information Tailored to the Individual Patient

    If the news to be delivered has complex ramifications, the physician should avoid the temptation to deliver too much of it all at once. Each piece of news, from the reality of the diagnosis to its implications, may or may not have a profound impact on the patient. The patient should be given time and opportunity to respond. This is particularly true initially, when the patient s self-image and worldview may be severely threatened.10, 15 Though the patients beliefs about a disease and previous reactions to stressful situations may help in predicting his or her response, this prediction is not always reliable, particularly if the news is perceived by the patient as overwhelming.

    (p.89) When surveyed well after receiving bad news, patients and families reported wanting a lot of information about the disease (prognosis, further tests, treatment options), reassurance about the physicians availability, and an opportunity to explore the impact of the disease on themselves, their families, and their careers.16, 17 Whereas all of these domains are important, information must be tailored initially to the patients perception of the problem, to direct patient requests, and to correcting unrealistic views about the illness. Reconciling discrepancies between Mrs. Johnson s perception of HIV as a death sentence and medical realities about HIVs responsiveness to treatment and the likelihood of a significant latency period before her illness became symptomatic was a vital early informing task. Since the patient s initial ability to integrate information may be limited, the physician should give simple, focused bits of information, using language that the patient can understand. Both verbal and nonverbal responses to each piece of information should be attended to, and the amount of information conveyed should be keyed to the patient's continued active engagement. Unfortunately information-laden physician soliloquies can alienate the patient without truly educating.

    The information Mrs. Johnson needed to hear at her initial visit included the following: (1) HIV infection usually has a long latency period, and there are medical interventions to help control it (there is hope); (2) she was contagious only through blood or sexual contact; (3) I would be her doctor and available to her; (4) she needed to tell her closest, most trusted supporting people, in this case her children; and (5) I would see her and any family she might choose in a few days. More complex information about HIV infection and its treatment, unless specifically requested, would probably not have been retained by the patient at this initial visit.

    The physician, too, has informational needs. The physician must assess and respond to the patients immediate risks from the diagnosis. Mrs. Johnson was not at significant risk from the biological effects of her disease, which were at an early stage. Her risk of being psychologically devastated, and potentially committing suicide, was significant. There is epidemiologic evidence of an increased incidence of suicide in individuals with AIDS18, 19 and other devastating illnesses, such as Huntington's chorea,20 renal failure,21 and cancer.22 A mandate for early HIV counseling, support, and suicide assessment for those who test positive for the virus is supported by several anecdotal reports of suicide upon hearing a diagnosis.23 Defining suicide risk in those with newly diagnosed, serious medical problems includes assessing suicidal thoughts, feelings, and intentions in the context of the patients previous mental health or substance abuse problems, considering prior suicide attempts, and evaluating available social supports.24, 25, 26 In a high-risk situation, experienced counselors, social support programs, the immediate involvement of significant others, and even short-term hospitalization are options. Suicide attempts immediately upon (p.90) hearing bad news, before a patient has had time to fully integrate and understand its meaning, indicate the hopelessness, isolation, and desperation many patients initially feel.

    To expect an initial interview of this kind to fully inform about a diagnosis, prognosis, and treatment plan is unrealistic. In Mrs. Johnsons case, because of the devastating effect of the news, and because there was no pressing medical need for immediate intervention, the informational goals of the encounter were scaled down dramatically. She learned she had HIV and that the disease was not as immediately dangerous or contagious as she had thought. Rather than focusing on treatment options, we needed to spend our energy achieving a common perception of the problem and its prognosis, and making a plan for telling her family and utilize her support systems. Before she left the office, she was able to assure me that she had no intention of ending her life, and that she was planning to inform her children and would call me in two days.

    Respond to the Patient's Feelings

    Mrs. Johnson reacted to her diagnosis of HIV as a profound threat to her as a person. Her response was based on her perception of and experience with HIV, which in many ways were not congruent with medical reality.23, 10, 11 Her misperceptions needed to be recognized and sensitively worked on as part of creating a healing partnership. Her belief that HIV was a death sentence, a disease that could transform her into a pariah, was overwhelming. (“I don't even have a future. Everything I know is that you gonna die anytime. What is there to do? What if I'm a walking time bomb? People will be scared to even touch me or say anything to me.”)

    Each perception had some truth and some distortion. The challenge for the clinician is to respond empathically to the patients devastating feelings and perceptions, and at the same time try to correct distortions so that the emotional impact of the news has some boundaries and coping can begin. With Mrs. Johnson, emotions initially flowed freely. My job as her physician was to allow them to be expressed fully, while keeping a sharp eye out for opportunities to reconcile her perceptions with mine. Other patients' emotions may be too shameful or threatening to be openly expressed. In these circumstances, the physician might encourage their expression by asking “What is the most frightening part?” in an effort to understand the patient s inner experience.

    When the threat of a diagnosis is severe, basic coping responses fall into three categories:2,3, 10, 11 (1) basic psychophysiologic, (2) cognitive, and (3) affective. These are summarized in Table 6–2. The two basic psychophysiologic mechanisms for coping are the fight-flight response and the conservation-withdrawal response,18 which correspond to activation of the sympathetic and parasympathetic (p.91)

    TABLE 6–2. Coping Responses to Bad News

    CATEGORY

    EXAMPLES

    Basic psychophysiologic

    Fight-flight

    Conservation-withdrawal

    Cognitive

    Denial

    Disbelief

    Blame

    Acceptance

    Intellectualization

    Affective

    Anger

    Shame

    Fear

    Relief

    Anxiety

    Guilt

    Helplessness

    Hopelessness

    thetic nervous systems, respectively. Mrs. Johnson exhibited the fight-flight response. She wanted to flee, and she began pacing around the small examination room, unable to sit still. I wanted to give her enough space, but I was also fearful that if she fled she might harm herself or find herself completely alone without any direction when this high-energy state wore off. Because she was allowed to pace and express herself, she was eventually able to accept personal support and information that helped put her losses in perspective, and we were able to devise a basic plan for follow-up.

    Becoming withdrawn and silent upon hearing bad news is an example of the conservation-withdrawal response. Cognitive processes in this state are very limited, so patients often report feeling numb and having little recollection of the content of discussions beyond the initial bad news. In more extreme forms of this reaction, heart rate and blood pressure drop, and a patient who does not lie down may faint (vasovagal or neurocardiogenic syncope). In other species, this response has considerable value as a survival mechanism in threatening situations (“playing possum”). Expectations with respect to information exchange have to be scaled down considerably once a patient enters a conservation-withdrawal state.

    There are five basic cognitive coping strategies: denial, blame, intellectualization, disbelief, and acceptance. Mrs. Johnson used denial as a cognitive coping strategy when she was diagnosed with a pituitary adenoma. It allowed her to lead a full, untroubled life without treatment in spite of substantial chronic leakage of milk from her breasts (galactorrhea).27, 28 When she was confronted with her HIV diagnosis, her initial cognitive responses were somewhat disorganized but were dominated by blaming her husband and God. She did not overtly express guilt, but she did openly wonder how this could happen to her after she had led such a good Christian life.

    (p.92) The cognitive response that physicians are most comfortable with is intellectualization. 6 Many patients (often to the relief of their physicians) seek information to control the emotional impact of their diagnosis. The physician should respond forthrightly to requests for information, but he or she should be aware that complex information may not be retained,29 in part because of the patients underlying affective state and the consequent cognitive disorganization caused by the news. If a patients questions and quest for information become overly aggressive, they may represent an indirect expression of anger or blame that may need more exploration.

    Disbelief occurs when patients hear a diagnosis but can't quite believe that it applies to them. Many patients initially experience this cognitive reaction upon hearing bad news. Some patients for whom disbelief is more persistent may ask to be repeatedly retested, or may seek second and third opinions. Disbelief is a close cousin to denial, though in the latter response thoughts about the illness are frequently kept out of cognitive awareness, whereas with disbelief, such thoughts are omnipresent. Finally, acceptance occurs when the bad news has been fully integrated into one's sense of person and plans are being made for moving forward. Complete acceptance sometimes takes considerable time and effort for patients to develop, and often a partial acceptance coexists along with several of the other cognitive reactions.

    Affective responses are also present when anyone receives bad news. These may include anger (rage), fear (terror), anxiety, helplessness, hopelessness, shame, relief, or guilt. In Mrs. Johnsons case, the overwhelming affects were overtly expressed, whereas with other patients they may be hidden to the patient, the physician, or both. Mrs. Johnson's initial affects were consistent with the fight-flight response, involving a mixture of rage, terror, and fear. Feelings flowed, giving tremendous power to her cognitive responses and a frightening dimension to having her world and self-image under siege: “Oh my God. Oh my God. I hate him. I hate him. I hate the ground he walks on … He gave this to me. I hate him. He took my life away from me. I have been robbed. I feel as if I have been robbed of a future. I don't have nothing.” Other patients may become acutely anxious or be dominated by feelings of helplessness (“There is nothing I can do”) or hopelessness (“There is nothing anyone can do”). In comparison to Mrs. Johnson, other patients' affects may be much more subtle or covert. Nevertheless, if left unaddressed, these affects can exert a powerful influence on the patient and family, and can alter a patient s ability to cope effectively with his or her illness.

    A patient s initial cognitive and affective responses must be explored before substantial efforts at patient education and informed decision making can proceed.1, 10 The depth of this exploration will depend on the strength of the patients responses, the medical necessity for rapid decision making, and the physicians interpersonal skills. If a physician is unable to undertake this task, (p.93) it should be delegated to a skilled person who has knowledge about the disease and experience working with patients.

    To understand and respond to a patients initial responses and distortions, the physician must listen, acknowledge, legitimize, explore, and empathize; these communication skills are described in detail elsewhere.30, 31, 32 Exploring, listening to, and tolerating the patients response to bad news are perhaps the most vital steps. To begin to relieve a patients suffering, the physician must thoroughly understand the patient's unique experience of pain and the meaning of the loss. This is particularly difficult when part of the patient's response is anger and some of the blame is focused directly or indirectly on the physician. Feelings of hopelessness and despair also may be hard for physicians to tolerate, particularly when a patient has a condition that does not respond well to biomedical intervention. By hearing and attempting to understand and empathize with a patient's pain and struggle, the physician can help the patient feel less alone and therefore less overwhelmed, perhaps creating a foundation on which the patient can begin to face the problems ahead.

    Not all patients will respond initially with cognitive distortions or strong affective responses. Some will simply want to know the medical facts and make prompt decisions. A patient who has been suffering with an undefined illness may actually feel relieved by bad news that at least clarifies the problem. By exploring the meaning that the news has for the patient, the physician can better understand whether an effectively neutral exchange of information represents a coping style (intellectualization) that helps control and limit affect, or in fact the news has little adverse meaning for the patient. Other patients will go elsewhere to work through the emotional side of their responses (family, friends, other health professionals), preferring to keep the physician-patient relationship a more traditional biomedical exchange.

    Planning and Following Through

    Being alone and isolated with a serious disease can cause severe suffering1 and therefore should be avoided as much as possible. In Mrs. Johnsons situation, my continued presence as her physician no matter what the future held was one of the most important outcomes of the initial encounter. Her perception of HIV as shameful and dangerous led her to ask if I would still be her physician. After I reassured her about our relationship, our next step was to decide whether and how she could confide in her children and close family members. I offered to meet with her and her children at any time to address their concerns and questions. She eventually benefited from written material about HIV and AIDS, although this was more than she wanted in the initial encounter. Because of the overwhelming nature of her (p.94) initial visit, it was premature then to talk about further medical staging of her disease or about initiating medical treatment; these would be addressed over the next several weeks and months. Fortunately, her disease did not require immediate intervention, or we would have had to try to push forward in spite of the difficulties.

    Deciding how to work with Mrs. Johnsons fundamentalist Christian church was more complex. Her church viewed AIDS as God's response to sinful behavior. She decided it was too risky to share this information with her pastor, thereby losing a potentially important means of support. She was informed about the availability of help from support groups, social agencies, and several more receptive pastors, but Mrs. Johnson was reluctant to share her grief with strangers. Supports need to be mobilized at many levels, but always tailored to the individual patient.

    The physician, too, may have support needs, particularly when the patient has a strong, sustained emotional response and/or when a patients prognosis is very poor.6 Physicians may also need advice about making difficult medical choices when the direction is still unclear after the medical facts and the patients preferences have been explored thoroughly. These dilemmas are particularly difficult when there is a strong, long-standing physician-patient bond and a physician is experiencing his or her own grief. The support of trusted colleagues, physician support groups, or therapists can be extremely helpful for the physician, who should not suffer alone in this process either.

    Desired Outcomes of Early Meetings

    Desired outcomes of early meetings are summarized in Table 6–3. They include the following:

    TABLE 6–3. Desired Outcomes of Early Meetings

    1. Minimize aloneness and isolation

    2. Achieve a common perception of the problem

    3. Address basic information needs

    4. Address immediate medical risks, including risk of suicide

    5. Respond to immediate discomforts

    6. Ensure a basic plan for follow-up

    7. Anticipate what has not been talked about

    (p.95) Minimize Aloneness and Isolation

    This simple yet profound outcome represents much of what needs to occur in the early meeting. Fully exploring the patient s emotional pain and cognitive responses, offering a continued presence, and mobilizing the patients social supports are all part of this process. Social supports should be tailored to the individual patient, leaving the patient ultimately in control of who gets informed and involved. Physicians may also need to avail themselves of social supports to work through their own grief.

    Achieve a Common Perception of the Problem

    Understanding and exploring commonness and differences sets the stage for a deeper understanding of the meaning and implications of the news.4, 33 The physician s medical view of the problem needs to be reconciled with the patients unique perception and personal implications. This process of understanding and exploring the patient s worldview can create a deep bond between the patient and physician, help alleviate isolation, and create a basis on which to build future mutual decisions.

    Address Basic Information Needs

    Information must be tailored to the needs of the individual patient. It should be straightforward and translated into terms the patient can fully understand. Information should be shared in small increments, with an opportunity for exchange on each point, rather than in a soliloquy. The physician should solicit and respond to a patients questions and concerns. Complex educational objectives need to be achieved progressively, in many steps over time.

    Address Immediate Medical Risks, Including the Risk of Suicide

    The risk of suicide upon hearing a devastating diagnosis is significant, and should be carefully assessed in early meetings. Sometimes a medical situation increases the need for a patient to integrate bad news, but usually time can be allowed for integration before major medical decisions are made. When an approach is unclear, additional resources and opinions should be sought from knowledgeable people. Allowing time for the patient and physician to make proactive, informed decisions about a treatment (or nontreatment) can make a tremendous difference in the patients attitude in participation, and in the outcome of the treatment.

    (p.96) Respond to Immediate Discomforts

    If anxiety, restlessness, or insomnia are persistent and overwhelming, then a short course of anxiolytic medication may be indicated. Similarly, physical pain can be treated with analgesics while options to approach the underlying disease are being explored. The physician should make every effort to lessen severe emotional and physical discomfort using medical measures and interpersonal skills, but it should be kept in mind that some emotional pain is inevitable as a patient attempts to come to grips with bad news. If medications are to be used, they should be given in limited amounts because of the lability of the clinical situation and the potential risk of suicide. Discomfort that persists should be treated aggressively to minimize suffering.

    Have a Basic Plan for Follow-Up

    Having a basic plan for follow-up makes the physicians continued presence a reality and can alleviate a patients sense of aloneness with the problem. A plan for informing and involving the patient s significant others should also be developed. It is advisable, particularly if the patient is feeling overwhelmed and out of control, to prescribe some concrete tasks: telling specific people, seeing a consultant, talking to individuals with similar problems, and/or writing down questions.

    Anticipate What Has Not Been Talked About

    If an initial meeting is all information and no affect, tell the patient he or she may have some strong feelings or reactions, and that they will be useful to talk about in future meetings. If the initial meeting is dominated by powerful emotional reactions, as with Mrs. Johnson, say that there may be many questions about the disease that can be discussed at future visits. A balanced process of affective exploration and information gathering that builds on a patient's perceptions and beliefs will help the patient begin to cope with bad news and make good decisions about future care.

    Epilogue

    When I spoke with Mrs. Johnson two days after our initial visit, she was in conversation with her family and had a few specific questions about her diagnosis. When she subsequently returned for a follow-up appointment, she was in a completely different psychological state. Her children could not have been more supportive, and they were more knowledgeable about the disease than (p.97) she had anticipated. She had obtained written information from a community AIDS center that reinforced the optimistic picture that I was painting. She had specific questions about her disease and treatment options. She initially refused antiretroviral medical therapy, preferring to rely exclusively on her religious faith, although later in her illness she accepted a multidimensional approach that included medications.

    As predicted, Mrs. Johnson remained healthy for several years before her immune system began to fail. She became subject to opportunistic lung and brain infections. Over time, we unfortunately had to have several more “bad news” conversations as her medical condition and prognosis deteriorated. None of these conversations was as emotional or devastating as the first, but they illustrate that for patients with severe progressive illnesses, there are a series of losses over time, often marked by discrete transitions punctuated by the exchange of bad news. The potential for devastation as well as the opportunity for reintegration are present at each transition.

    I am extremely grateful to Mrs. Johnson, whose initial struggle is so graphically described in this chapter, for her generosity hi sharing her experience. Throughout her illness, her children were a source of great joy and support, as was her religious faith, though she never shared information about her illness with her church members. As death approached, she had frequent opportunistic infections that necessitated hospitalization, but she was able to spend most of her time at home cared for by her family. She eventually died with AIDS dementia. She and her family have given many of us lessons about courage and resiliency. Her story is chronicled more completely in a book chapter titled “Another Cross to Bear.”34

    Note: The dialogue and some of the associated commentary in this chapter were originally presented in a manuscript I published along with my wife, Penny, titled “Delivering bad news: dialogue, delivery and dilemma,” Archives of Internal Medicine 1991; 151:463–468.

    (p.98)

    (p.99)

    Notes:

    (1) Cassell EJ. The nature of suffering and the goals of medicine. N Engl J Med 1982; 306:639–645.

    (2) Myers BA. The informing interview: enabling parents to “hear” and cope with bad news. Am J Dise Children 1983; 137:572–577.

    (3) Hoy AM. Breaking bad news to patients. Br J Hosp Med 1985; 34:96–99.

    (4) Goldie L. The ethics of telling the patient. J Med Ethics 1982; 3:128–133.

    (5) Reiser SJ. Words as scalpels: Transmitting evidence in the clinical dialogue. Ann Intern Med 1980; 92:837–842.

    (6) Zinn WM. Doctors have feelings too. JAMA 1988; 259:3296–3298.

    (7) Buckman R, Kason Y. How to Break Bad News: A Guide for Health Care Professionals. Baltimore: The Johns Hopkins University Press, 1992.

    (8) Walsh RA, Girgis A, Sanson-Fisher RW. Breaking bad news 2: What evidence is available to guide clinicians? Behav Med 1998; 24:61–72.

    (9) Yieing D, Kjein RE. Delivering the bad news: The most challenging task in patient education. Am Optom Assoc 1987; 58:660–663.

    (10) Jewett LS, Greenberg LW, Champion LA, et al. The teaching of crisis counseling to pediatric residents: A one-year study. Pediatrics 1982; 70:907–911.

    (11) Lazarus RS. Psychological Stress and Coping Process. New York: McGraw-Hill International Book Co., 1966.

    (12) Cohen P, Lazarus RS. Coping with the stress of illness. In: Stone GC, Cohen P, Adler NE, editors. Health Psychol San Francisco: Jossey-Elms, 1979, pp. 217–254.

    (13) Kubler-Ross E. On Death and Dying. New York: MacMillan, 1969.

    (15) Cassell EJ. The Nature of Suffering and the Goals of Medicine. New York: Oxford University Press, 1991.

    (16) Novack DH. Therapeutic aspects of the clinical encounter. J Gen Intern Med 1987; 2:346–355.

    (17) Weisman AL, Worden WJ. (1980). Report of Project Omega: coping and vulnerability in cancer patients. Massachusetts General Hospital, Harvard Medical School.

    (18) Marzuk PM, Tierney H, Tardff K, Gross EM, Morgan EB, Hsu MA. Increased risk of suicide in persons with AIDS. JAMA 1988; 259:1333–1337.

    (19) Frierson RL, Lippmann SB. Suicide and AIDS. Psychosomatics 1988; 29:226–231.

    (20) Farrer LA. Suicide and attempted suicide in Huntingtons disease: Implications for preclinical testing of persons at risk. Am J Med Genet 1986; 29:226–231.

    (21) Abram HS, Moore GL, Westervelt FB. Suicidal behavior in chronic dialysis patients. Am J Psychiatry 1971; 127:119–124.

    (22) Louhivuori A, Hakama M. Risk of suicide among cancer patients. Am J Epidemiol 1979; 109:59–65.

    (23) Faulstick ME. Psychiatric aspects of AIDS. Am J Psychiatry 1987; 144:551–556.

    (24) Whitlock PA. Suicide in physical illness. In: Hoy AM, editor. Suicide Baltimore: Williams and Wilkins, 1986, pp. 151–170.

    (25) Hatton C, Valente S. Suicide: Assessment and Intervention, 2nd ed. East Norwalk, CT: Appleton & Lange, 1983.

    (26) Hall JM, Stevens PE. AIDS: A guide to suicide assessment. Arch Psychiatr Nurs 1988; 1:115–120.

    (27) Suchman AL, Matthews DA. What makes the patient—doctor relationship therapeutic? Exploring the connectional dimension of medical care. Ann Intern Med 1988; 108:125–130.

    (28) Watson M, Greer S, Blake S, Shrapnell K. Reaction to a diagnosis of breast cancer: relationship denial, delay and rates of psychological morbidity. Cancer 1984; 53:2008–2012.

    (29) Jackett TP CN. Development of a quantitative rating scale to assess denial. J Psychosom Res 1974; 18:93–100.

    (30) Cassileth BR, Zupkis RB, Sutton-Smith K, March V. Informed consent: Why are its goals imperfectly realized? N Engl JMed 1980; 302:896–900.

    (31) Cohen-Cole SA, Bird J. Interviewing the cardiac patient. In: Wenger N, editor. A Practical Guide for Helping Patients Cope With Their Emotions. New York: Lejacq Publishers, 1986, pp. 53–63.

    (32) Lazare A, Ldpkin M, Putnam SM. The functions of the medical interview. In: Lipkin M, Putnam SM, Lazare A, editors. The Medical Interview. New York: Springer-Verlag, 2000.

    (33) Brody DS. The patient's role in clinical decision making. Ann Intern Med 1980; 93:718–722.

    (34) Quill TE. A Midwife Through the Dying Proces: Stories of Healing and Hard Choices at the End of Life. Baltimore: Johns Hopkins University Press, 1996.