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© 2001 American Society for Clinical Oncology Breaking Bad News About Cancer: Patients’ Preferences for CommunicationFrom the Departments of Behavioral Science, Neuro-oncology, Gastrointestinal Oncology, and Gynecologic Oncology, The University of Texas M. D. Anderson Cancer Center, Houston, TX. Address reprint to Patricia A. Parker, PhD, Department of Behavioral Science—243, The University of Texas M. D. Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX 77030; email: pparker@ mdanderson.org.
PURPOSE: The goal of this study was to assess patients’ preferences regarding the way in which physicians deliver news about their cancer diagnosis and management. PATIENTS AND METHODS: A sample of 351 patients with a variety of cancers completed a measure assessing their preferences for how they would like to be told news about their cancer. Patients rated characteristics of the context and content of the conversation as well as physician characteristics. RESULTS: Factor analysis indicated that patients’ preferences for how they would like to be told news regarding their cancer can be grouped into the following three categories: (1) content (what and how much information is told); (2) facilitation (setting and context variables); and (3) support (emotional support during the interaction). Women (P = .02) and patients with higher education (P = .05) had significantly higher scores on the Content scale, women (P = .02) had higher scores on the Support scale, and younger patients (P = .001) and those with more education (P = .02) had higher scores on the Message Facilitation scale. Medical variables were not associated with patients’ ratings of the importance of the three subscales. CONCLUSION: Patients rated items addressing the message content as most important, though the supportive and facilitative dimensions were also rated highly. Understanding what is important to patients when told news about their cancer provides valuable information that may help refine how this challenging task is best performed.
UNFAVORABLE NEWS in the medical context has been defined as "any news that drastically and negatively alters the patient’s view of her or his future."1 Though physicians in every specialty must relay adverse medical information to patients, it is particularly common in the oncology setting where news regarding a life-threatening diagnosis, treatment failure, and recurrence are frequently given to patients. Because a diagnosis of cancer is associated with a number of potentially unfavorable events, including debilitating and/or disfiguring treatment, pain, loss of function, and death, these discussions may be particularly stressful and difficult for patients. Therefore, the type of communication best suited to this setting may differ from other types of bad news discussions. Although there have been some general guidelines and recommendations for how bad news interviews should be conducted,2-8 these recommendations have most frequently taken the form of practical advice formulated on the basis of anecdotal experiences or opinions with little empirical foundation. For example, in one review of more than 300 articles from the published literature from 1973 to 1993, only 23.2% of authors reported descriptive data on breaking bad news, and almost two thirds were opinions, reviews, letters, case reports, or non–data-based descriptive studies.5 Further, the reports that have included descriptive data were generally small and focused on identifying some of the characteristics about how patients are told bad news and the timing of the news rather than on identifying their preferences for how it is best done.9,10 Only a few studies have assessed patients’ reactions to how unfavorable news was conveyed to them or have examined the concordance between physicians and patients in terms of how they viewed the way in which bad news is delivered.10-12 Girgis et al,11 for example, asked a sample of oncologists, oncology nurses, and breast cancer patients to rate the importance of 15 general principles (eg, the patient has a legal and moral right to accurate, reliable information) and 12 general steps (eg, tell the patient the diagnosis and prognosis honestly and in simple language, though not bluntly) for breaking bad news that had been described in the consensus guidelines by Girgis and Sanson-Fisher.5 In another study, Peteet et al10 conducted semi-structured interviews with 32 cancer patients to determine how they were told news of their diagnosis. Most of the patients were told in person (84%) and in a private location (75%). Thus, based on the limited data, it does seem that bad news is best given in person, in a quiet, private location, which allows the patient to explore his or her reactions to the news and the physician to provide the information at the patient’s own pace.10,12-14 Although these reports provide stimulating hypotheses and directions for future work, further empirical investigations are clearly warranted. A recent survey also found that the majority of physicians do not have a consistent plan or strategy when they break bad news to their patients.2 Among a sample of physicians who attended an annual meeting of the American Society of Clinical Oncology, 22% reported that they did not have a consistent approach to the task of breaking bad news to patients, and 51.9% reported that they had several techniques or tactics, but did not have an overall plan. Determining what patients believe to be important in the interaction may help refine the current guidelines and yield specific, evidence-based recommendations for facing this challenging task. In addition, most of the recommendations have typically been written from the physician’s perspective, with less attention focused on the patient’s perceptions and preferences. Because giving unfavorable news is a two-way communication between the physician and the patient and because the patient is the one whose life is directly affected, it is particularly important to consider and understand the patient’s perspective on the communication. Thus, the aim of the current study was to assess patients’ preferences regarding the manner in which physicians’ deliver news about cancer diagnosis and recurrence.
The primary goal of this project was to assess patients’ preferences for how they would like to be told news regarding their cancer. Because no validated measure existed to assess patients’ preferences regarding this type of physician-patient interaction, we developed a brief, self-report measure for this purpose. The development of this measure included: item generation, item administration, exploratory factor analysis, and evaluation of the measure’s psychometric properties. We also identified those items that were rated by patients as most and least important and assessed if these preferences were related to demographic (age, sex, education, and marital status) and medical (stage of disease or cancer recurrence or not) variables.
Participants and Procedures Patients were approached in the waiting area before their appointment, at which time the study was briefly described, and they were asked to participate. Patients who consented to participate completed the questionnaire while waiting for their appointments. The study was approved by the hospital’s Institutional Review Board.
Measures All of the items were worded as statements, and respondents were asked to rate on a five-point scale how important each of the items would be to them when given the news about a cancer diagnosis or recurrence. Response options for each item were as follows: (1) not at all important; (2) optional, can take or leave it; (3) important; (4) very important; and (5) essential, every doctor should do it. Participants were asked to think about the time when they were first told that they had cancer or that the cancer had recurred (for those patients who had a recurrence) and respond to the questions as they would have liked to have been told. Although there are no established measures of patients’ preferences to demonstrate the concurrent validity of the MPP, the Monitoring subscale of the Miller Behavioral Style Scale (MBSS)15 was used for this purpose because it assesses individuals’ response styles that may be related to how patients respond when given news about their cancer. Specifically, the MBSS is a self-report measure of coping style that identifies two types of coping styles, monitoring and blunting. The MBSS consists of four hypothetical, potentially distressing scenarios, and participants are asked to identify the coping strategies that most characterize their typical responses to each of the situations. The MBSS has been used in a variety of medical populations, including cancer patients,16-19 and has been shown to be stable over time.15,20 Because the MBSS monitoring scale measures to what extent individuals respond actively or seek out information when faced with hypothetical stressful situations, the results should theoretically be related to patients’ preferences regarding the way in which information about their cancer and treatment is delivered. Therefore, for this study, only the monitoring scale was evaluated. Patients provided demographic and medical background information, including age, education, occupation, ethnicity, marital status, initial date of cancer diagnosis, the type of cancer, the stage of disease, and whether they had been told of a recurrence. Medical information regarding cancer stage and diagnosis and cancer recurrence was also obtained from the medical charts.
Statistical Analysis
Patients Three hundred eighty-six patients were approached before their follow-up clinic appointments. Five patients declined to participate because they did not have enough time, did not have their reading glasses with them, or were not interested in participating in research. Of the 381 patients who consented verbally and were given questionnaires, 351 (92%) returned them. The demographic characteristics of the participants are listed in Table 1. The age range of the participants was 28 to 80 years, with a mean of 57.2 years (SD = 10.3 years). Sixty percent of the patients were women, and most were married. Thirty percent of the patients had been diagnosed with breast cancer, 17% with gynecologic, 31% with gastrointestinal, and 22% with urologic cancers. The mean time since patients received their initial diagnosis was 3.3 years (SD = 4.4 years), and 31% had been diagnosed with recurrent disease.
Ratings of Most Important and Least Important Aspects of Bad News Delivery Of the 46 questionnaire items, we identified those that the participants rated the highest and lowest, and these items and the mean ratings are listed in descending order of importance in Table 2. Patients indicated that when given news of a cancer diagnosis or recurrence, having their physicians possess technical knowledge about their cancer was rated as most important. Of the 10 items receiving the highest ratings, seven addressed aspects related to the expertise of the physician and the type and extent of information provided to the patient, and the other three addressed characteristics of the facilitative component of the communication (eg, doctor giving news directly).
Among the 46 items, the items rated the lowest were almost exclusively those describing the supportive aspects of the communication. Nonetheless, the means were still high for these behaviors. A rating of 3 indicated that the item was considered to be important. Thus, these aspects of the communication were also regarded as important, though their ratings were lower than the informational aspects of the interaction.
Exploratory Factor Analysis
Factor 1 (content). Thirteen items loaded on this factor and accounted for 33.4% of the total variance. These items emphasized the expertise of the physician (eg, feeling confident about doctor’s competence and doctor being up-to-date on research on the patient’s type of cancer) and various aspects of the content of the conversation (eg, information about the disease, treatment, and impact on functioning). Factor 2 (support). Twelve items loaded on this factor, accounting for 10.7% of the total variance. This subscale covers the supportive aspects of the communication and includes offering comfort and support to the patient, providing information about other resources, and helping communicate the information to others. Factor 3 (facilitation). Seven items loaded on this factor and accounted for 6.3% of the total variance. These items dealt with where and when the information is conveyed and include having privacy, having the doctor’s full attention, and waiting until all tests are completed before giving the patient the news.
Psychometric Properties The correlations among the three subscales were significant but of relatively low magnitude ( Table 4). This suggests that the three subscales are related but not redundant dimensions of patients’ preferences for how they are told news about their cancer diagnosis, treatment, and recurrence.
The association of the three MPP subscales with the scores on the MBSS Monitoring scale was also examined (Table 4). In assessing convergent validity, the association between the MPP Content subscale and the MBSS Monitoring scale is of most interest because these scales theoretically assess different aspects of information seeking. As can be seen, there was a significant, positive association between monitoring style and patient preferences for aspects of the message (r = 0.18, P < .01) and the supportive aspects of the communication (r = 0.15, P < .01). Thus, higher monitors also placed more importance on getting detailed information about their cancer, having all of their questions answered by their physician, and wanted to get more support from their physician. This association provides evidence of concurrent validity for the MPP.
Relationship Between Demographic and Medical Variables and Patients’ Preferences
This study identified and characterized patients’ preferences for how they would like to be told news about their cancer by their physician. It is one of the few studies that has focused on patients’ preferences as the recipient of the news rather than solely on the physicians’ perspective. Patients in this study identified clear preferences regarding how they would like news conveyed to them, and their ratings indicated that aspects of the content of the message, the setting, and the supportive elements provided by the physician were all important. Patients indicated that the physician’s expertise and being given information on their condition and treatment options were areas of greatest importance to them. This is consistent with the findings of a study in which patients rated different aspects of cancer diagnosis disclosure in terms of their hopefulness.21 Sardell and Trierweiler21 found that the behaviors that patients rated highest in enhancing hopefulness were those related to the technical and informational aspects of the communication (eg, physician offers most up-to-date treatments available). Thus, patients’ may rate as most important those aspects of the communication that they find the most hopeful. Although the informational aspects of treatment received the highest ratings in this study, this does not suggest that the supportive aspects of the communication should be neglected. Though the supportive aspects of the communication were rated as less important than the specific content, they still received ratings between important and very important on the scale. Our findings support those of a study examining cancer patients’ satisfaction with care in which the authors found that the items related to the physician’s technical competence received highest ratings, but items addressing aspects of the physician’s interpersonal and communication skills also received high ratings of importance.22 One reason that the MPP Content items may have received higher ratings than the Support items may be that, for many patients, when they are given the news, their primary goal is to receive information regarding their disease and its treatment and may have lesser expectations about receiving support from their physicians. The results of the factor analysis identified three separate, internally reliable, dimensions among all of items assessing how patients want to be told about their cancer. Results indicated that patients’ preferences for how they are told about their cancer falls into the following three moderately correlated, but distinct, subjective dimensions: content, facilitation, and support. This suggests patients are able to distinguish between different types of informational needs and should be asked about all three areas when assessing patients’ needs and preferences. The MPP scale can be used to evaluate whether patients with different medical, demographic, and personality characteristics have different preferences regarding how they are given news by their physicians. This information could then be used to provide patients information regarding their cancer in a way that best meets their needs. Two of the dimensions from the MPP, content and support, are consistent with factors identified in a study of breast cancer patients who were asked about what their physicians did when they were told their cancer diagnosis.23 This study identified two general factors, information giving and caring, which are comparable with the Content and Support subscales identified in our study. Other studies have also examined bad news delivery in terms of general categories. For example, Ptacek et al13 organized their review of the literature into two categories, aspects of the physical and social setting and characteristics of the message, which included what was said and how it was said. Thus, our findings agree with findings reported elsewhere in the literature, indicating that characteristics of the interview fall into distinct categories. Results from this study support and expand on those of previous studies in which cancer patients expressed the need for detailed information about their cancer.11,24,25 For example, in the study by Girgis et al,11 patients rated existing broad guidelines for breaking bad news. Several of the items rated highest by patients in our study were also rated as essential by most of patients in the Girgis et al11 study, such as wanting to be told one’s diagnosis as soon as it is certain and wanting full information about treatment. However, the items rated in our study were more specific than the items rated in the Girgis study which contained more than one concept or action and were more global in nature. Another advantage of our study was that our sample was relatively large and included patients with several types of cancers, patients of both genders, and patients with a range of disease characteristics. Thus, this study offers additional information about cancer patients’ preferences regarding how unfavorable news is conveyed to them and what they consider to be most important in the interaction. Our findings suggest that female patients place more importance on getting detailed information about their cancer and on having the physician provide support when being told the news than do male patients. In addition, patients with more formal education tended to want more information from their physicians and also indicated that the context of how the news was told was more important than patients with less formal education. This is consistent with previous research, which has found that women24 and patients with more formal education25 want more detailed information from their physicians regarding different aspects of their cancer. Older patients believed that the context of how the news was told was less important than younger patients. In contrast to the findings of other studies,24 patients’ preferences did not differ by stage of disease or whether the cancer had recurred. This may be partially due to the fact that patients who come to M. D. Anderson or other large cancer centers may be seeking more information and may have different expectations regarding their treatment regardless of disease characteristics. Overall, these results suggest that when physicians are talking with patients about their cancer, it may be more important for them to consider the patients’ demographic characteristics, especially their sex, age, and educational background rather than their specific cancer background. The expected positive relationship between the Content scale and the MBSS Monitoring scale suggests that individuals who seek out and attend to information when faced with threatening situations are also those who believe it is important for their physician to give them detailed information about their cancer and its treatment. This is consistent with findings from other studies in which patients with a high monitoring style were found to want more information about their medical treatment.19 In addition, there is some evidence that high monitors are less satisfied with their communication with their health providers.18 Thus, it may be that patients who indicate that it is essential to them to get extensive information on the MPP Content subscale may be more dissatisfied with their physicians and/or their treatment because they do not get sufficient information. Knowing what patients’ preferences are and tailoring the bad news interview to their preferences may therefore be one way to increase patients’ satisfaction. The results of the current study suggest that protocols for breaking bad news to patients, such as SPIKES (an acronym for a six-step protocol for breaking bad news that has been used successfully in communication skills workshops conducted at The University of Texas M.D. Anderson),2,26 are likely to meet patients expectations for bad news disclosure. For example, the S of the SPIKES protocol represents Setting up the interview and corresponds to the Facilitation subscale of the MPP. The K of the SPIKES protocol represents giving Knowledge and information to the patient and this is similar to the Content subscale or information dimension. Similarly, the E in the SPIKES protocol stands for addressing the patient’s Emotions with empathic responses, which is similar to the Support subscale of the MPP. Importantly, what is being taught to physicians about how to deliver bad news corresponds to the areas that patients believe to be important. Some limitations of the current study should be noted. First, this study was conducted at a comprehensive cancer center, and therefore, these patients’ perspectives may differ from those of patients receiving treatment in community hospitals or other settings. Many patients may come to M. D. Anderson because they believe that they will receive the latest treatments, and these patients may have greater information needs than patients who seek treatment at other hospitals. Nonetheless, because the sample included patients with a variety of cancers, stages of disease, and backgrounds, our results reflect the preferences of a broad range of patients. Another limitation was that our study examined patients’ preferences at only one point in time. Therefore, it does not provide information about whether individual patients’ preferences might vary over time. It has been reported that patients’ informational needs may change during the course of their treatment and that patients may want more specific information earlier in their treatment.24 Due to the cross-sectional nature of this study, we did not attempt to formally address this question. However, no significant differences were found between patients with recent diagnoses versus those with recurrent disease. Future studies should investigate the stability of patients’ preferences regarding what and how they want to be told news about their cancer. Another area that warrants further research is the identification of additional patient characteristics that may influence their informational and supportive preferences. An important extension of the current work is to prospectively evaluate ways of providing information about cancer diagnosis and/or recurrence that meet patients preferences and expectations. Such efforts are important because providing unfavorable news effectively may improve a patient’s compliance with treatment, lead to a clearer understanding of instructions or symptoms, help reduce stress and anxiety, and/or improve patient satisfaction.
We thank Drs Eva Singletary and Gary Glober for their support and input on this project. We thank the Multidisciplinary Breast, Gastrointestinal Oncology, Gynecologic Oncology, and Urology Centers at the University of Texas M. D. Anderson Cancer Center for their support of this project. We also thank Beth Notzon, from the Office of Scientific Publications, The University of Texas M. D. Anderson Cancer Center, for her helpful editorial comments on this article.
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Baile WF, Buckman R, Lenzi R, et al: SPIKES: A six-step protocol for delivery bad news—Application to the patient with cancer. Oncologist 5: 302-311, 2000 3. Blanchard CG, Labrecque MS, Ruckdeschel JC, et al: Information and decision-making preferences of hospitalized adult cancer patients. Soc Sci Med 27: 1139-1145, 1988 4. Buckman R: Breaking bad news: Why is it so difficult? BMJ 288: 1597-1599, 1984
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Ptacek JT, Eberhardt TL: Breaking bad news: A review of the literature. J Am Med Assoc 276: 496-502, 1996 14. Ptacek JT, Fries EA, Eberhardt TL, et al: Breaking bad news to patients: Physicians’ perceptions of the process. Support Care Cancer 7: 113-120, 1999[Medline] 15. Miller SM: Monitoring and blunting: Validation of a questionnaire to assess styles of information under threat. J Pers Soc Psychol 52: 345-353, 1987[Medline] 16. Gard E, Edwards PW, Harris J, et al: Sensitizing effects of pretreatment measures on cancer chemotherapy nausea and vomiting. J Consult Clin Psychol 56: 80-84, 1988[Medline] 17. Lerman C, Rimer B, Blumberg B, et al: Effects of coping style and relaxation on cancer chemotherapy side effects and emotional responses. Cancer Nurs 13: 308-315, 1990[Medline] 18. Steptoe A, Sutcliffe I, Allen B, et al: Satisfaction with communication, medical knowledge and coping style in patients with metastatic cancer. Soc Sci Med 32: 627-632, 1991 19. Miller SM, Brody DS, Summerton J: Styles of coping with threat: Implications for health. J Pers Soc Psychol 54: 142-148, 1988[Medline] 20. Miller SM, Mangan CE: Interacting effects of information and coping style in adapting to gynecologic stress: Should the doctor tell all? J Pers Soc Psychol 45: 233-236, 1983 21. Sardell AN, Trierweiler SJ: Disclosing the cancer diagnosis: Procedures that influence patient hopefulness. Cancer 72: 3355-3365, 1993[Medline] 22. Wiggers JH, Donovan KO, Redman S, et al: Cancer patients’ satisfaction with care. Cancer 66: 610-616, 1990[Medline] 23. Roberts CS, Cox CE, Reintgen DS, et al: Influence of physician communication on newly diagnosed breast patients’ psychologic adjustment and decision-making. Cancer 74: 336-341, 1994[Medline]
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Butow PN, Maclean M, Dunn SM, et al: The dynamics of change: Cancer patients’ preferences for information, involvement and support. Ann Oncol 8: 857-863, 1997 25. Cassileth BR, Zupkis RV, Sutton-Smith K, et al: Information and participation preferences among cancer patients. Ann Intern Med 92: 832-836, 1980 26. Baile WF, Kudelka AP, Beale EA, et al: Communication skills training in oncology: Description and preliminary outcomes of workshops on breaking bad news and managing patient reactions to illness. Cancer 86: 887-897, 1999[Medline] Submitted August 18, 2000; accepted December 28, 2000.
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Copyright © 2001 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
