Discussing Disease Progression and End-of-Life Decisions

Introduction

In the course of a career, an oncologist may meet numerous times with patients and usually their families to disclose or discuss unfavorable medical information, such as the diagnosis of cancer, a poor prognosis, or the failure of curative treatment. These encounters are often stressful for both the patient and doctor.[1,2] Physician discomfort with breaking bad news may be increased further when the physician or patient experiences sadness or other negative emotions related to the discussion.[3]

Observational studies have indicated that many physicians struggle to find a comfortable way to conduct these “bad news” discussions with patients and families.[4,5] At the 1998 annual meeting of the American Society of Clinical Oncology (ASCO), a symposium on breaking bad news was attended by nearly 700 participants, including medical and surgical oncologists. They were surveyed, using an automated, real-time response system, regarding their experiences with giving bad news to patients.

Almost half of the audience indicated that they gave bad news to patients at least 10 times per month. However, fewer than 5% had received any formal training in this area. It is not surprising, then, that nearly 50% of participants rated their own ability to break bad news as only poor to fair. Furthermore, nearly 70% of attendees indicated discomfort when faced with the need to respond to patients’ emotional reactions, such as crying, anger, or denial.[6 ]

In addition to being concerned about the emotional responses of the patient and family members, clinicians who break bad news may be concerned that this news will destroy patients’ hope.[3,6,7] However, the relationship between the provision of disease-related cancer information and patient level of hope appears to be complex. A small number of patients may prefer to have minimal information and to let the physician direct treatment with little involvement from them.[8]

There is convincing evidence, however, that most cancer patients want the physician to provide them, in a sensitive way, with thorough information about their diagnosis, prognosis, and treatment options.[9-12] In addition, there is evidence that when patients who desire complete disclosure are provided with incomplete information, when only the positive aspects of treatment are discussed, or when the clinician attempts to disguise a poor prognosis, patient hopefulness may actually be eroded.[13] Many physicians, however, underestimate the amount of information that patients wish to have.[14,15]

Whether due to the physician’s concern about upsetting the patient or lack of awareness of the patient’s need for information, the provision of inaccurate or incomplete information will likely create a “cascade effect”; ie, patients who are uninformed are unable to participate fully in decision-making—an important goal for many cancer patients today.[16] In camouflaging the bad news, physicians may also harm their relationship with patients, since attempts to shield the patient from bad news through partial disclosure may be perceived as “dishonest.”[17]

For patients who wish to be completely informed, there is always the risk that unfavorable information may cause them to become emotionally upset for a short time. However, over the longer term, when physicians provide the information that the patient desires in an empathic manner, they can increase patient satisfaction, promote patient compliance, and even facilitate patient coping.[18-21]

In the mental health area, communication with the patient is an important component of treatment. In this setting, verbal interventions aimed at initiating and maintaining rapport with the patient, eliciting the patient’s concerns and opinions, and engaging the patient’s collaboration in treatment are recognized as being therapeutic in and of themselves. These techniques include active listening, clarifying and exploring the patient’s statements and feelings, and using empathic responses to acknowledge and validate the patient’s concerns. In the area of medical education, acquisition of these skills comprises an important goal of curricula focusing on doctor-patient communication.[22-24]

Studies in which these communication principles have been applied to the disclosure of unfavorable medical information (breaking bad news) have shown that medical students can learn a strategy for breaking bad news when they are given appropriate education and an opportunity to role-play.[25] Likewise, oncologists who attend workshops to enhance communication skills can increase their confidence in managing difficult communications with cancer patients.[26]

In this article, we present dialogues between a physician and a hypothetical patient with advanced ovarian cancer. These conversations illustrate how specific communication skills may be used therapeutically at various critical stages of the illness. We have included dialogues that occur after the disclosure of the diagnosis since discussing subsequent unfavorable news may be more difficult for oncologists than is divulging the diagnosis.[6]

SPIKES Six-Step Protocol

The dialogues presented in this paper illustrate an individualized, patient-centered approach for breaking bad news. This approach is called the SPIKES six-step protocol for breaking bad news.[27] We use this protocol because, in addition to increasing the clinician’s confidence in breaking bad news,[6,25] it is rated highly by oncology practitioners[6] and incorporates the recommendations of communication experts, patients, nurses, and oncologists for disclosing unfavorable information to cancer patients.[1,28-31] Briefly, the protocol covers six steps or areas:

S: Get the Setting Right—Ensure privacy and comfort (of both physician and patient). Deliver bad news in person, allowing sufficient time. Check to see whether the patient wants a family member or significant other present.

P: Understand the Patient’s Perception of the Illness—Ask what the patient knows about his or her illness and/or the purpose of tests. Where there is an information gap, educate.

I: Obtain an Invitation to Impart Information—Find out how much information the patient wants to have about the results, including the prognosis.

K: Provide Knowledge and Education—Warn the patient about the arrival of unfavorable news. Provide information using simple language, frequently checking the patient’s understanding. Avoid excessive bluntness, partial disclosure of information, or false hope. Give broad prognostic time frames. Avoid the phrase, “There’s nothing more we can do.”

E: Respond to the Patient’s Emotions With Empathy—Address the patient’s (and the physician’s) emotions with empathic responses and gestures (eg, touching). Provide support by clarifying, exploring, and validating the patient’s feelings and concerns.

S: Provide a Summary Strategy—Review the information provided. Respond to questions and discuss treatment options. Provide information about support services. Offer to answer questions at a future date.

The SPIKES protocol can be applied to a number of situations in which negative information is disclosed, such as discussing the lack of curative treatment options, unfavorable diagnostic results, or news about the progression of disease.

Brief Case History

A 53-year-old woman recently completed six cycles of chemotherapy with cisplatin(Drug information on cisplatin) (Platinol) and paclitaxel(Drug information on paclitaxel) (Taxol) for stage IIIC suboptimally tumor-reduced, poorly differentiated, epithelial ovarian cancer. She returns for a follow-up visit after chemotherapy. Her computed tomographic (CT) scan shows multiple peritoneal nodules 0.5 to 1.0 cm in diameter. There are no parenchymal visceral metastases.

After the physician greets the patient in the examination room, he takes a brief interval history and performs a physical examination, including a pelvic inspection. He suggests that the patient dress and move to the consultation room for review of the current situation. The following dialogue ensues.

Communication Task: Disclosure of Treatment Failure

Step One: Assessing the Patient’s Information Needs and Preferences

Doctor: Is there anyone with you today whom you would like to join us?

Patient: No. My husband is out of town and I came alone today.

Doctor: Would you like to wait until he can be with you?

Patient: No, I think I will be all right.

Doctor: OK. I’d like to discuss the details of your test results with you. Would that be all right?

Patient: Yes.

Doctor: Before I do that, I’d like to verify that we both have the same understanding of why we did these tests. Could you tell me, in your own words, why you think the tests were done?

Patient: Well, you’ve ordered the tests to see if the chemotherapy worked.

Doctor: That’s right. We did the tests to see how well the cancer has responded to the treatment now.

Prior to disclosing specific disease information, the physician checked to see whether the patient wished to include a family member or significant other. Most patients do prefer to have someone present for such discussions, and a significant other can support the patient and help him or her remember information. This is important because a number of studies have documented significant information gaps in patient understanding about their cancer diagnosis and evaluation procedures.[32-34] Also, by not saying immediately that everything is fine, the physician begins to prepare the patient for bad news.

By using an open-ended question (“Could you tell me in your own words...”), the physician also allowed the patient to express her understanding of why he had asked for the tests. Knowing what a patient understands about the purpose of procedures and evaluations will prevent the clinician from breaking bad news to a patient who is unprepared for unfavorable information.

In this case, if a gap in the patient’s knowledge were revealed, explanation of the test results would be contraindicated until the physician had summarized the previous treatment and the purpose of the imaging studies. In other words, the physician should eliminate the knowledge gap prior to disclosing new information. Occasionally, discordance between the patient’s and the doctor’s understanding of key information about the illness may represent a manifestation of the patient’s psychological denial that needs to be explored.[35]

Determining the patient’s information needs is also important because the patient’s preparedness to understand and assimilate information may vary over the course of the illness. For example, early in the illness, patients may be more naive about the technical aspects of their care. At that time, complete information can help patients deal with the uncertainties surrounding evaluation and treatment. Patients whose condition has worsened, on the other hand, may want less specific information about disease progression, for example, and may prefer that the physician focus on further treatment options.[36]

Specific communication techniques demonstrated in the above dialogue include validating the patient’s perception through use of the statement “that’s right” and providing a lead-in to a subsequent statement (“We did the test &ldots;”). Validating statements (also called “normalizing”) is one way of providing support to the patient.

Key Communication Skills Illustrated: Eliciting patient preferences.Establishing the agenda for discussion. Using open-ended questions. Validating the patient’s perception of the illness.

Desired Outcomes: Establishing patient comfort and rapport. Lending structure to the interview. Ascertaining whether an information gap or patient denial exists. Providing support through validation of the patient’s concerns.

Step Two: Forecasting and Imparting the Bad News

Doctor [responding to the patient’s explanation of why the tests were done]: That’s right. We did the tests to see how well the cancer has responded to the treatment. Unfortunately, the test results were not as good as we had hoped for [doctor pauses]. I’m sorry to tell you that the treatment has not shrunken the tumors [pause]. Sadly, they have actually grown somewhat.

Before disclosing the ineffectiveness of the latest treatment, the physician alerted the patient to the fact that bad news was coming. In other words, he “fired a warning shot.” This was accomplished through the direct statement, “The test results were not as good as we had hoped for,” and by the use of the words “unfortunately,” “sorry to tell you,” and “sadly.” Forecasting the arrival of bad news and then pausing briefly allows patients to brace themselves to hear the unfavorable information.[37] On the other hand, breaking the bad news too abruptly can contribute to psychological disorganization (shock) or can mobilize pathologic denial.[29]

Key Communication Skills Illustrated: Forecasting the bad news (also called “firing a warning shot”). Using pauses to allow patients time to assimilate information. Giving the information in discrete chunks.

Desired Outcome: Facilitating understanding and assimilation of the information.

Step Three: Responding to the Patient’s Emotional Reaction

Doctor [to the now-tearful patient who has just been told of the unsuccessful outcome of chemotherapy]: I know this result is very upsetting [physician pulls his chair closer to the patient, offers her a tissue, and pauses].

Patient: I was just so sure the cancer was gone. I had talked myself into believing it.

Doctor: I also wish that we had gotten a better result [pause]. You must be very disappointed to have had your hopes dashed like that [pause].

Patient: It’s just that I feel so bad for my husband.

Doctor: Your husband?

Patient: You know he is getting ready to retire, and last year we bought some land out west. We were planning to build a house. I feel like such a burden.

Doctor: A burden [pause]?

Patient: Well, if I weren’t sick we would be able to go ahead with our house.

Doctor: I understand your concern. Although you will need more treatment, we will see if it’s possible to adjust it to your plans.

Also, let me mention that many patients feel guilty because their illness inconveniences others in the family [pause]. If that feeling continues to bother you, we can arrange for some counseling [pause]. In the meantime, I know that you and your husband are attending a support group, and that might be one place where you can discuss these feelings.

When patients receive life-threatening information, they may react in an emotional manner, often with shock, disbelief, and/or crying.[28,38] As this patient was expecting that her treatment would have a favorable outcome, the bad news was particularly upsetting.

When patients do become emotional, it may be awkward or uncomfortable for the physician; even short periods of crying may seem as though they last forever. However, while it is common for patients to become upset, it is rare for patients to have extreme reactions to bad news (eg, to become psychotic or threaten suicide). Many patients are embarrassed about crying, and will often say, “I thought I was stronger than that,” and will compose themselves rather quickly. It is important to remember that crying serves a useful function: it releases tension and allows the patient to move on to cognitive tasks, such as discussing further treatment plans.

When patients cry, there are several things that physicians can do. In this example, the physician addressed the patient’s distress and his own discomfort by using empathic responses directed at both himself and the patient (eg, “you must be very disappointed” and “I also wish we had gotten a better result”). Empathic responses are indicated whenever a strong emotion is expressed. They serve to acknowledge and validate the patient’s feelings, thus reducing the sense of isolation that can occur when bad news is received.[28]

Rather than encouraging additional emotional expression by the patient, empathic responses actually can facilitate the patient’s emotional recovery. Pulling one’s chair closer, offering the patient a tissue, and, when appropriate, touching the patient’s arm or holding his or her hand are also empathic responses. Empathy does not mean that the physician needs to actually feel what the patient is experiencing, but rather, that the physician expresses an awareness of the distress that the patient is suffering.

Notice that in this case, the doctor explored the patient’s response to the bad news by repeating the phrase “a burden” as a question. By doing so, he invited the patient to expand on what she meant and was able to ascertain that the source of her distress was not only the negative health information but also a psychosocial concern—her guilt at disrupting her husband’s retirement plans. Exploratory responses, such as repeating the patient’s own words or inviting the patient to expand on a statement (eg, “tell me more”) can help identify sources of patient concern.

Patients may be reluctant to discuss additional concerns unless invited to do so for fear that it is inappropriate to raise these concerns or that they are taking up too much of the doctor’s time. In this example, once the physician understood the source of the patient’s distress, he was able to provide her with some realistic hope that she still might be able to carry out some of her retirement plans.

The physician also acknowledged that he was concerned about the patient’s feelings. Patients appreciate the physician’s interest in the personal aspects of their illness and report that this is very important in helping them cope.[39,40]

In addition, the physician normalized the patient’s feelings by telling her that “many patient’s feel guilty.” This is one way of diminishing the patient’s feelings of responsibility and providing support.

Finally, by giving the patient information in small parcels, a technique known as “chunking,” the physician facilitated the assimilation of the points that he was attempting to convey. During the deliberate pauses, he observed the patient’s verbal and nonverbal cues.

Key Communication Skills Illustrated: Physically responding to the patient’s emotional reaction (eg, using tissues, pulling the chair closer). Making empathic responses. Exploring and validating the patient’s feelings. Offering strategies to deal with patient concerns.

Desired Outcomes: Expressing the physician’s concern and support. Ensuring that the patient feels (1) less guilty about being a burden to her husband, (2) more hopeful about the disruption of her and her husband’s plans, and (3) reassured that assistance will be available. Ensuring that the physician feels (1) supportive to the patient, (2) more informed about issues of importance to the patient, and (3) effective in addressing the patient’s emotional and family concerns.

Step Four: Tailoring the Educational Message

After addressing the patient’s emotional distress, the physician answers several questions that the patient has about the test results.

Doctor: Now, I had planned to discuss further treatment today if that’s okay with you [pause]. If you would like to wait until your husband is able to join you, we can have that discussion another time.

Patient: No, I’d like to do it now.

Doctor: All right. Now, before we go on, let me check with you to make sure that I know what you understood about the test results.

Patient: You told me that the chemotherapy didn’t shrink the cancer very much. In fact, you said it had grown.

Doctor: That’s right. Now regarding future treatment plans, it would be helpful for me to know how much detail you would like to have.

In the above dialogue, the doctor left open the possibility that the patient was not prepared to have a discussion of further treatment plans. He also made sure that the patient understood what he had said about her response to treatment. Finally, he asked the patient how much she wanted to know about the subsequent treatment and left room for the patient to ask about her prognosis.

Patient education does not mean that the doctor must provide every detail of treatment, but rather, that the doctor should tailor the information to the individual patient’s needs. This tailoring of information is important because the amount of medical information a patient desires is determined by a variety of factors that differ from one patient to the next. These include such factors as personality[8] and stage of disease.[36]

The physician can determine how much information a patient wants simply by saying, “Some people want to have lots of detailed information about their disease and its treatment while others are more comfortable with just a general idea regarding their condition and prefer not to hear every detail. What do you prefer?”

Key Communication Skills Illustrated: Checking with the patient as to readiness for additional information. Ascertaining the patient’s knowledge.

Desired Outcomes: Determining (1) how much information the patient has assimilated, (2) how much additional information the patient desires, and (3) when to provide the additional information.

Even when patients desire detailed information regarding their condition and treatment, they may have difficulty assimilating this information during the brief time allowed by the usual medical interview. They may, therefore, find it helpful to have a written description of their condition and of the treatment plan. One patient with newly diagnosed breast cancer asked to take home the paper covering the examining table after her doctor outlined, on this paper, the steps that would be followed in her treatment (chemotherapy, radiation, laboratory tests, decisions about further treatment). The patient tacked up the paper in her kitchen. Some patients also may find audiotapes of the interview or a letter summarizing the diagnosis and treatment plan to be helpful.[41]