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Discussing Bad News in the Outpatient Oncology Clinic: Rethinking Current Communication Guidelines

From the Communication and Behavioral Oncology Program, Karmanos Cancer Institute, Wayne State University, Detroit, MI

Address reprint requests to Susan Eggly, PhD, Program in Communication and Behavioral Oncology, 5th Floor, Hudson-Webber, Karmanos Cancer Institute, Wayne State University, Detroit, MI 48201; e-mail: egglys{at}karmanos.org

HERE’S THE CASE

Aware that his pancreatic cancer had metastasized to his liver, Mr B and his adult son and daughter traveled several hundred miles to see an oncologist at a regional comprehensive cancer center. As the oncologist explained the treatment options, Mr B and his family occasionally interrupted with questions, statements, or expressions of emotion. During the interaction, Mr B and his family learned that surgery was not a treatment option, as they had hoped. They also learned that Mr B was not eligible for any clinical trials. The only available option was chemotherapy, but it carried the potential for severe adverse effects, had less than a 10% chance of shrinking the tumor, and had no chance of "melting the tumor away." In response to one of the son’s questions, the oncologist said that complementary or alternative medicines were not available at this center. As part of his response to the daughter’s question about the urgency of a treatment decision, the oncologist mentioned that the cancer had been in Mr B’s body for a number of years. Mr B and both of his children asked several questions about this piece of information, indicating their surprise and dismay. Mr B shook his head and exclaimed, "And I go to the doctor all the time!" As the discussion concluded, the oncologist provided details about how chemotherapy might be delivered and repeated that there was no urgency to the decision.

Medical interactions in which bad news is discussed, as illustrated by Mr B, his family, and his oncologist, are widely known to be distressing for physicians, patients, and family members.^1-6 To address this problem, researchers have investigated the experiences and desires of health care providers, patients, and families in multiple medical settings,^7,8 and on the basis of these results, others have developed guidelines for the effective communication of bad news in the context of the cancer patient–oncologist interaction.^9-11 These guidelines have served as a useful model for managing a complex and distressing task and, as such, have been widely disseminated and incorporated into medical training programs.^12,13 However, formal evaluation of the effectiveness of these guidelines has been primarily limited to self-reports by physicians or evaluations of simulated scenarios.^9,14 The lack of observational data to support the model may be in part a result of the fact that the setting is an inherently difficult one to study and that the guidelines may not fully reflect the complexities that emerge during actual interactions in the oncology setting.

Several versions of guidelines have been published to assist physicians in communicating bad news to their patients.^7,8 These guidelines assume that medical interactions in which bad news is delivered, regardless of the type of medical practice, are linear in format and essentially composed of the following three chronologic phases: preparing to disclose the news, disclosing the news, and responding to reactions to the news. Suggested communication strategies for each of the three sections include the following. First, before disclosing the news, physicians should prepare for the difficult interaction by ensuring uninterrupted time and a private location and by eliciting patients’ previous knowledge of the medical situation and desire for information. Second, when disclosing the news, physicians should use lay language, speak in small chunks, adjust their pace to the patient’s, and probe for patient comprehension. Third, after disclosing the news, physicians should allow for and respond to emotions, provide direct answers to questions, and conclude the interview by summarizing and identifying next steps.^7-11 Some versions of these guidelines additionally address ethical and cross-cultural concerns, such as whether to tell the truth and to whom to disclose the information.^15-19

To further our understanding of discussions of bad news in the cancer setting within the framework of current guidelines, we observed and analyzed 25 randomly selected video-recorded interactions taken from a larger, ongoing, institutional review board–approved investigation of communication between oncologists, patients, and companions at outpatient cancer clinics at two comprehensive cancer research centers. Thirty-five interactions were originally randomly chosen from the larger study, and 25 were determined by trained coders to contain bad news topics (defined as information that may have been perceived by patients and/or companions as sad and new). The mean age of the patients in the 25 interactions was 60.7 years; 15 were male; and the majority identified themselves as white (n = 22). More than half of the patients had completed high school, and approximately 40% had some college education. A variety of cancer diagnoses were represented, including lung cancer, mesothelioma, pancreatic cancer, hepatobiliary cancers, multiple myeloma, colon cancer, and other cancers. Twenty-three of the patients (92%) had at least one companion present in the interaction; of these patients, most (n = 16; 70%) were accompanied by one companion, five had two companions, one had three companions, and one had four companions. The relationship of the companions to the patients was as follows: 11 were spouses/partners, 12 were adult children, two were friends, one was a parent, and four were self-identified as other. Three of the 33 companions did not complete demographic questionnaires. Among the companions who did complete a questionnaire, 10 (33%) were male; the mean age of all companions was 48.6 years; and the majority identified themselves as white (n = 28, 93%). More than half had at least some college education, and a third (32%) had graduated from college. (Details of the procedures for these observations and results have been presented elsewhere^20,21 and are available from the authors.)

Our observations of these 25 interactions within the framework of current guidelines for giving bad news lead us to challenge some of the basic assumptions underlying the guidelines. We suggest that three of these assumptions are oversimplified and may not reflect the complexities of actual physician-patient/companion interactions in the oncology setting. Additionally, we offer suggestions for revisions to the guidelines that may enhance their applicability to this setting.

ASSUMPTION NO. 1: PHYSICIANS CAN PLAN A BAD NEWS INTERACTION

Guidelines for giving bad news assume that physicians can predict when an interaction will include a discussion of bad news and can shape the interaction accordingly. For example, one set of guidelines suggests that physicians "set up the interview" by mentally rehearsing, arranging for privacy, involving patients’ significant others, and using supportive nonverbal behavior such as sitting down and making eye contact.⁹ However, we challenge the assumption that physicians can and should prepare for a bad news interaction before it occurs. This challenge is based not only on our observations of interactions like the case of Mr B and his family but also on the inherent characteristics of bad news as defined in the published literature on the topic.

Most published articles on the topic of bad news do not specifically define the concept; rather, they allude to it indirectly with terms such as "diagnosis," "life-threatening diagnosis or death," "treatment failure," "prognosis," "significant information," or "unfavorable medical information."^3,6,22,23 However, some widely cited publications are more explicit. The first of these defines bad news as information that has an adverse and serious effect on an individual’s view of his or her future, noting that bad news is always a subjective appraisal by the individual receiving the news.⁹ Another publication defines bad news broadly as "any information that produces a negative alteration to a person’s expectations about their present and future."⁷ A third notes that bad news is difficult to define because participants in a medical interaction appraise information subjectively as good, neutral, or bad, and therefore, almost any news has the potential to be bad.⁸ Thus, according to these authors, "News is bad to the extent that it results in a cognitive, behavioral, or emotional deficit in the person receiving the news that persists for some time after the news is received."⁸ Clearly, experts in the area of communicating bad news agree that information is defined as bad news only when an individual appraises it as such after its disclosure. Therefore, the appraisal process may not be predicted accurately by an objective party, particularly before the information has been disclosed.

Admittedly, some information may be appraised universally as bad and new, such as the sudden death of a young person. However, most information is appraised as positive or negative within the context of an individual’s expectations and values.^24,25 For example, in our observations of video-recorded oncologist-patient/companion interactions, some patients expressed relief when the oncologist proposed that they consider participating in a clinical trial, presumably because it provided them with a hopeful alternative. However, other patients expressed dismay at the same proposal, presumably because they perceived the trial to be a last resort option. Still others displayed no overt behaviors that might have provided clues to their reaction to the offer of a clinical trial, providing their physicians with few cues as to how they should respond to these patients.

Rather than suggesting that physicians should anticipate and plan for bad news interactions, we suggest that physicians prepare for all interactions in which they will disclose any information, from the most momentous to the most trivial, by engaging in communication behaviors appropriate for delivering potentially stressful information. Current guidelines already suggest that physicians ensure adequate time and privacy, elicit patients’ perspectives on the current medical situation and expectations for this visit, and tailor the information delivery process to the needs of the participants in the interaction. Existing guidelines for giving information^26,27 should apply to all interactions in which information is delivered and discussed. This step should be the universal precaution of patient-physician communication.

ASSUMPTION NO. 2: BAD NEWS INTERACTIONS FOCUS ON ONE CENTRAL PIECE OF INFORMATION

Current published guidelines for communicating during discussions of bad news assume that each bad news interaction focuses on a single piece of bad news, such as the initial diagnosis of cancer. However, our observations of actual interactions in which bad news was discussed in outpatient cancer clinics revealed what most practicing oncologists surely have discovered, that most of the interactions were highly complex and consisted of numerous pieces of related and unrelated information.

To explore the assumption that bad news interactions in a cancer setting focus on one central piece of information, we instructed coders to observe the 25 video-recorded interactions (described earlier) to identify how much time was spent discussing diagnosis and treatment in each interaction and how many topics were discussed in each interaction that may have been appraised by patients and/or their companions as sad and new. First, coders used a software system for analyzing observational data (Noldus Observer Video-Pro; Noldus, Wageningen, the Netherlands) to document the percentage of total interaction time spent discussing diagnosis and treatment. Results demonstrated that the mean length of the interactions was 37 minutes, and 63% of that time was spent discussing diagnosis and treatment. To check for intercoder reliability, five tapes (20%) were coded by two coders, and in each case, coders fell within 2 percentage points of each other. Next, using an open-ended format, the same coders listed the number and topic of pieces of information that seemed to them to be appraised by patients and/or companions as sad and new. Results of this step demonstrated that 24 of the 25 interactions included multiple bad news topics, with a mean of 3.2 bad news topics per interaction. In the single interaction that was reported by the coders to include only one bad news topic, the physician informed the patient that the diagnosis was as yet uncertain and would require further diagnostic procedures to be determined.²⁰

These results challenge the assumption that bad news interactions focus on one central piece of bad news, such as an unanticipated new diagnosis of cancer or the death of a loved one. Instead, our observations revealed interactions in which patients and their companions were given several pieces of information, such as details about diagnosis and staging, the necessity and consequences of further diagnostic testing, the availability of and eligibility requirements related to various treatment options, the adverse effects and logistical complexities of treatment, clinical trials, and the prognostic probabilities related to the diagnosis and treatment of their cancer. Information was disclosed and discussed in the context of other information and questions or comments by patients and companions; responses to any single portion of the information were not predictable.

Given the results of our observations, we suggest that guidelines for discussing bad news with patients and companions in the oncology setting prepare physicians to provide numerous pieces of information rather than focusing the interaction around one central piece of news. Current guidelines suggest, appropriately, that physicians deliver information by using lay language, speaking in small chunks, adjusting their pace to the patient’s, and probing for patient comprehension. Revised guidelines might emphasize that this process should be repeated with each piece of information, with clear transitions between pieces of information, and, most importantly, with the relationships between pieces of information clearly explained. In this way, patients and companions will be afforded the opportunity to absorb each piece of information, to understand the relationship between the pieces of information, and to respond as needed with questions or comments.

ASSUMPTION NO. 3: BAD NEWS INTERACTIONS CONSIST OF A PHYSICIAN-PATIENT DYAD

Despite the fact that most published guidelines make suggestions to physicians for communicating with patients, our observations of video-recorded oncologist-patient/companion interactions in the cancer setting challenge the assumption that this type of interaction is limited to the physician-patient dyad. As part of our analysis of the 25 bad news interactions, we explored the extent to which patients and their companions were active participants in the interactions through the verbatim transcription and analysis of all questions the patients and companions asked the oncologist during each interaction. Questions were defined as direct or indirect verbal information-seeking utterances. Once the questions were transcribed, they were analyzed for both frequency and topic. Results of the frequency analysis demonstrated that patients and companions asked a total of 648 questions across the 25 interactions; the number of questions per interaction ranged from zero to 44 (mean, 10.04 questions; standard deviation, 10.01 questions). Companions asked significantly more questions than the patients; 251 questions (38%) were asked by patients, and 396 questions (62%) were asked by companions. Although some patients were accompanied by several companions, this significant difference remained even in those interactions where there was only one companion.²¹

Again, our results support what practicing oncologists surely know, that typically, bad news interactions are not limited to a physician-patient dyad; rather, patients are accompanied by at least one companion, and these companions participate actively in the interactions. In addition to the case of Mr B and his family, many cases from our video-recorded interactions illustrate the active role companions may play and the complexities they introduce into the interaction. In one case, the patient and family members disagreed about treatment plans; in another, a family member insisted that the physician advise the patient to follow an exercise regimen; and in another, a patient asked the oncologist how long she would live, despite the fact that a family member had sent an e-mail message to the oncologist requesting that he not reveal a poor prognosis to the patient.

Given our findings, we suggest that guidelines for discussing bad news include strategies for facilitating effective interactions with multiple participants. When eliciting information about previous knowledge, desire for information, or comprehension, oncologists should attempt to elicit this information, to the extent time allows, from each participant in the interaction. Strategies for managing interactions with multiple participants are explored elsewhere, such as in published literature on effective communication in oncology interactions.²⁸ In the family medicine setting, Lang et al²⁹ provide core skills for managing interactions with family members. These strategies can be tailored to the oncology setting and then incorporated into communication guidelines for oncologists.

CONCLUDING THOUGHTS

Our challenges to basic assumptions underlying current guidelines for communication during interactions in which bad news is discussed lead us to make two suggestions. First, although current guidelines adapt basic principles of effective physician-patient communication to these distressing interactions, we suggest that they be revised to more accurately reflect the complexities of actual interactions in a cancer setting. This revision should include the following guidelines for oncologists: (1) take the universal precaution of applying strategies for discussing bad news to all interactions in which information is discussed because any information has the potential to be perceived as bad news; (2) discuss multiple pieces of related and unrelated information in a way that allows patients and their companions to absorb and respond to each piece of information, independently and in context; and (3) address the varying needs of all participants in the interaction, including patients and each of their companions. Once these revisions have been made, researchers should test the guidelines by exploring the extent to which they can be applied to actual interactions in oncology and other settings and the extent to which they assist physicians, patients, and companions in coping with interactions such as these.

Our second suggestion based on these challenges to current guidelines is that future analyses of medical interactions and related guideline development should incorporate theoretical perspectives beyond the notions of linearity and causality, which currently predominate in the field of medicine.^30,31 Medical research has made an important contribution toward improving physicians’ skills in communicating with patients through investigating the causal relationship between specific physician communication behaviors, such as asking open-ended questions and discussing psychosocial issues, and patient outcomes, such as patient satisfaction, adherence to treatment regimens, and even malpractice suits.³² Indeed, medical educators often find it useful to provide physicians-in-training with evidence for specific behaviors or guidelines that they can use, at least in the initial stages of their work with patients, to help them facilitate effective interactions that they perceive may be difficult.

However, the interactions that we observed and analyzed in this report unfolded in a way that was nonlinear, unscripted, and highly complex. Future analysis and related guideline development may benefit from a theoretical perspective known as symbolic interactionism, which assumes that actual interactions do not follow scripts; rather, interactions emerge out of social relationships, and the interpretation of the interaction (eg, bad news) emerges from the interaction itself.³³ From this perspective, we cannot plan for a bad news discussion before it occurs because its interpretation as bad and news results from the discussion. From this perspective, health care providers should not be trained to anticipate and engage in scripted encounters such as "the bad news encounter." Instead, communication training should provide physicians with the skills to adapt their behavior appropriately in response to the fluctuating informational and emotional needs of all participants during all stages of the interaction.³⁴

Our earlier reference to the universal precaution of physician-patient communication was purposeful. History has taught us, tragically, that it is not possible to predict which patients bear communicable, potentially fatal illnesses and that we must prepare for all interactions with patients and their bodily fluids with the awareness that this is a possibility. In a similar manner, oncologists should be trained to be ready to deal with the communication of bad news in virtually all interactions with cancer patients and their families.

Authors' Disclosures of Potential Conflicts of Interest

The authors indicated no potential conflicts of interest.

NOTES

Supported by National Cancer Institute research Grant No. PI RO1CA075003-03 (T.L.A.).

Presented in part at the Annual Meeting of the American Academy on the Physician and Patient Research and Teaching Forum, Indianapolis, IN, October 1-3, 2004; and the Second Annual American Psychosocial Oncology Society Conference, Phoenix, AZ, January 27-29, 2005.

Authors' disclosures of potential conflicts of interest are found at the end of this article.

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Submitted June 14, 2005; accepted August 31, 2005.

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