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© 2002 American Society for Clinical Oncology
Oncologists’ Attitudes Toward and Practices in Giving Bad News: An Exploratory StudyByFrom the University of Texas M.D. Anderson Cancer Center, Houston, TX; and the University of Toronto Sunnybrook Cancer Center, Toronto, Ontario, Canada. Address reprint requests to Walter F. Baile, MD, Psychiatry Section, Department of Neuro-Oncology, The University of Texas M.D. Anderson Cancer Center, 1515 Holcombe Blvd, Box 431, Houston, TX 77030; email: wbaile{at}mdanderson.org
PURPOSE: To examine the attitudes and practices of oncologists in disclosure of unfavorable medical information to cancer patients. METHODS: A questionnaire was administered to a group of physicians who attended the 1999 Annual Meeting of the American Society of Clinical Oncology. The questionnaire assessed demographic and practice-related information and the frequency of patient encounters in which unfavorable cancer-related information was disclosed. Participants were also asked about difficulties they had when approaching stressful discussions and communication strategies used in giving unfavorable information. RESULTS: The questionnaire was completed by 167 oncologists. Sixty-four percent were medical oncologists. Thirty-eight percent practiced in North America, 26% practiced in Europe, 13% practiced in South America, and 13% practiced in Asia. Participants gave bad news to patients an average of 35 times per month. Discussing no further curative treatment and hospice was reported as most difficult. In disclosing the cancer diagnosis and prognosis, physicians from Western countries were less likely to withhold unfavorable information from the patient at the family’s request, avoid the discussion entirely, use euphemisms, and give treatments known not to be effective so as not to destroy hope than physicians from other countries. There was significant variability in opinions regarding the best time to discuss resuscitation, with 18% of respondents believing that it should be done close to the end of life. CONCLUSION: There was significant variability in how physicians approach information disclosure to cancer patients. Factors such as geographical region and cultural and family variables may be important influences in this process.
SURVEYS OF CANCER patients in Western cultures indicate that most would prefer to know their diagnostic findings, prognosis, and the probability of success after treatment of their disease.1-7 Healthy individuals who were asked to project their information needs should they develop cancer feel similarly.8 Given these findings, a number of efforts have been initiated to improve the skills of oncologists in effectively communicating information to patients and families. These have included formal courses,9-12 the formulation of guidelines for giving bad news,13 and the presentation of symposia and workshops on communication skills for oncologists at national meetings.14 These efforts to provide patients with increased information about their illness are also consistent with Western ethical values and legal norms that promote the principle of patient autonomy, that is, the right of an individual to make his or her own health care decisions and for consent to treatment to be informed.15,16 However, these standards may be less applicable to other cultures, in which different societal norms influence the process by which cancer-related information is transmitted to patients.17 In Japan, for example, the obligation to inform the patient is overshadowed by the duty to protect the patient from the social isolation that can occur because of the stigma of cancer.18 This may explain the reason that only 30% of Japanese cancer patients on average are told their diagnosis.19 Differing beliefs about the value of negative information may account for how cancer-related information is disclosed in other parts of the world also. For example, a recent survey showed that among 48 members of the medical staff of a hospital in Mexico City, 96% of nurses and 35% of doctors did not use the word cancer in discussions with oncology patients20 and only 45% of Italian general practitioners believed that cancer patients should always be told their diagnosis.21 Other studies have shown a disclosure rate as low as 3% in Egypt22 and 52% in Italy.23 In Spain, only 32% of patients with incurable cancer knew their diagnoses.24 Among French gastroenterologists, the family was more likely to be told the bad news than the patient who was facing an incurable disease.25 Many of the studies on bad news disclosure noted above did not focus specifically on oncologists, who may feel a greater obligation to be forthright in disclosing bad news given that they often need to explain to patients about potentially toxic or drastic treatments. Moreover, as other countries adopt Western values, one might expect that physician practices in and attitudes toward disclosing bad news about cancer may be changing.26 As our own society becomes increasingly pluralistic, US physicians may be more frequently exposed to situations in which their value systems conflict with those of their patients and patients’ families. To update our knowledge of cross-cultural practices regarding giving bad news to cancer patients, we conducted a survey of oncologists who attended the 1999 Annual Meeting of the American Society of Clinical Oncology (ASCO).
A questionnaire regarding attitudes and practices in disclosing cancer-related information to patients with advanced disease was constructed. The questions were based on previous research that our group conducted on breaking bad news. We aimed to understand better the issues of cross-cultural differences that frequently arose in workshops that we had conducted with many groups of oncology physicians and other cancer professionals. We included several questions that were previously administered at a symposium on breaking bad news held at the 1998 Annual ASCO meeting and added several questions on topics (eg, resuscitation) that were believed to be key for many participants. We then solicited the opinions of several expert colleagues who were practicing oncologists and who had published in the area of physician-patient communication to identify additional key areas for inclusion.11 The questionnaire and the protocol were approved by the Institutional Review Board of the University of Texas M.D. Anderson Cancer Center. The questionnaires were distributed by support staff at the M.D. Anderson exhibit during the 1999 ASCO annual meeting. The questionnaire took approximately 10 minutes to complete. Participants who completed the questionnaire received a complementary copy of the videotape, "How to Break Bad News."27 The questionnaire included the following information: (1) demographic information (age, sex, ethnicity, country of birth, and country of practice) and (2) practice-related information (cancer specialty, years in specialty, type of practice [private, academic, other], number of patients seen per week, and number of times practitioner conducted bad news discussions with patients per month). A series of additional questions covered the following areas: an estimate of the degree of perceived difficulty in conducting a number of communication tasks, such as disclosing cancer recurrence; beliefs regarding the best time to discuss resuscitation preferences with the patient; the frequency with which respondents used strategies to avoid having to give bad news directly, eg, using euphemisms in place of the word cancer; and the perceived value of education in the area of communication (Tables 1 and 2 list specific items).
Analyses Using analysis of variance (ANOVA), we examined whether there were any significant differences between the frequency of difficult discussions, level of difficulty of topics, and managing different situations versus the frequency of specific communication behaviors based on sex, age (25 to 43 v 44 to 72), setting (academic setting v private practice), and country of practice (Western countries v other countries). For each comparison, we controlled for the other three variables and present the adjusted means (± SE) for the significant findings. Western regions included North America (United States and Canada), Northern Europe, Australia, and New Zealand. Other regions included Southern Europe, Middle East, Asia, and Latin America.
Questionnaires were completed by 167 physicians. An additional 13 people indicated that they did not have a medical degree, and two did not supply their educational background and therefore were not included in the analyses. The majority (64%) of physicians identified their specialty as medical oncology, 11% as radiation oncology, 7% as surgical oncology, 5% as gynecological oncology, 4% as hematology, 4% as pediatric oncology, and 5% as other. Thirty-eight percent practiced medicine in North America; 26% practiced in Europe; 13% practiced in Central and South America; 13% practiced in Asia; and the remaining 10% practiced in the Middle East, Eastern Europe, and Australia/New Zealand. The average physician age was 44.2 years (SD, ± 8.6; range, 27 to 72 years), and 73% were men. Fifty-five percent of respondents indicated that they worked in an academic setting, 36% were in private practice, and 9% were in other settings. On average, the physicians had been practicing medicine for at least 12 years (SD, ± 8 years), ranging between 1 and 35 years. More than 60% of the respondents indicated that they treated more than 40 patients in an average week. They frequently engaged in a variety of bad news discussions with patients. They reported having an average of 12.8 (SD, 12.6; range, 0 to 100) discussions per month about a new cancer diagnosis; 7.6 (SD, 8.4; range, 0 to 50) about recurrence of disease; 7.4 (SD, 7.6; range, 0 to 50) on treatment failure; 7.4 (SD, 10.9; range, 0 to 80) about no further curative treatment available; 5.6 (SD, 8.0; range, 0 to 50) on hospice referral; 4.4 (SD, 7.6; range, 0 to 50) on do not resuscitate (DNR); and 0.4 (SD, 1.1; range, 0 to 8) on euthanasia. Results of the ANOVA indicated that physicians who practice in Western countries (8.5 ± 1.16 v 4.4 ± 0.98; P < .01) reported having significantly more discussions with patients about treatment failure in the past month than physicians who practice in other countries (Table 1). Younger physicians (5.4 ± 1.00 v 1.8 ± 1.14; P < .05) reported having a significantly greater number of DNR discussions in the past month. In addition, physicians in Western countries reported discussing DNR significantly more than physicians who practice in other countries (6.2 ± 0.90 v 1.0 ± 1.30; P < .001). The level of difficulty that the physicians had in discussing different topics and managing difficult situations are listed in Table 2. Not surprising, the most difficult conversations were those that dealt with the lack of additional treatment options, euthanasia, cancer recurrence, treatment failure, and DNR. The majority of physicians reported that they did not have enough time for difficult discussions with patients. They also reported that it was stressful to deal with their patients’ families and respond to their patients’ emotions, to be honest without depressing their patients, and to handle their own negative feelings (Table 2). Physicians from academic settings (3.5 ± 0.16 v 4.0 ± 0.14; P < .05) reported significantly less difficulty in discussing the lack of further curative treatment options with patients than physicians from nonacademic settings. Male physicians (2.9 ± 0.12 v 2.5 ± 0.18; P < .05) and younger physicians (3.0 ± 0.13 v 2.5 ± 0.16; P < .05) had greater difficulty in discussing hospice referral. In addition, physicians who practice in Western countries indicated that they found it significantly more difficult to discuss euthanasia with patients than did physicians who practice in other countries (3.3 ± 0.18 v 3.9 ± 0.27; P < .05). Physicians in private practice found it significantly more difficult to manage their own negative feelings than did physicians in an academic setting (2.8 ± 0.21 v 3.4 ± 0.19; P < .05). The frequency of specific communication behaviors is presented in Table 2. More than 40% of the physicians queried reported that they occasionally to almost always withheld the prognosis from the patient if he or she did not ask, withheld the prognosis at the family’s request, used euphemisms to discuss bad news, and offered treatment options that were unlikely to work. Results of the ANOVA indicated that female physicians (2.3 ± 0.16 v 2.8 ± 0.10; P < .01) and physicians who practice in Western countries (1.8 ± 0.11 v 3.2 ± 0.15; P < .0001) were significantly less likely to withhold the prognosis from the patient at the family’s request than others. In addition, physicians in Western countries (2.4 ± 0.12 v 3.1 ± 0.16; P < .0001) were less likely than physicians who practice in other countries not to disclose a grave prognosis if the patient did not ask, less likely to use euphemisms in discussing patients’ prognosis so as to maintain hope (2.5 ± 0.11 v 2.9 ± 0.15; P < .0001), and less likely to offer a treatment that was unlikely to work so as not to destroy hope (2.1 ± 0.10 v 2.6 ± 0.14; P < .0001). These differences are represented in Fig 1, which illustrates the percentage difference between Western and other oncologists in responding to each of these questions. Male physicians were significantly more likely than female physicians to use euphemisms in discussing prognosis with patients (2.9 ± 0.10 v 2.5 ± 0.16; P < .01) and were more likely to give patients specific probabilities of a treatment’s not working (3.6 ± 0.11 v 3.2 ± 0.17; P < .05).
The physicians were also asked to indicate when they thought the best time was to discuss DNR orders with the patient and when they typically had these discussions. Thirty-seven percent of the physicians thought that the discussion should take place "at the time of diagnosis or presentation with metastatic disease"; 41% reported "after treatment failure or when it is clear that patient cannot tolerate more treatment"; 10% reported "just before referral to hospice"; and 12% reported "a few days or a few hours before the patient’s death." The physicians indicated that they typically have the discussion of DNR orders slightly later in the disease trajectory than when they think it should be done (28% reported having the discussion "at the time of diagnosis or presentation with metastatic disease"; 43% reported "after treatment failure or when it is clear the patient cannot tolerate more treatment"; 11% reported "just before referral to hospice"; and 18% reported "a few days or a few hours before the patient’s death.") Seventy-two percent of the physicians had a match between when they thought the discussions should take place and when they typically had the discussion; 20% typically had the discussion later than when they thought they should; and only 8% typically had the discussion earlier than they thought they should.
This survey assessed the attitudes and behaviors of oncologists when they deal with key communications with patients who have cancer. Whereas the majority of physicians who completed the survey were medical oncologists, a number of other cancer specialists (36% of the sample) also completed the questionnaire, making the results somewhat generalizable across oncology subspecialties. The international representation of respondents allowed us to make some broad cultural comparisons. The sample also included representation from physicians in private practice as well as those in academic oncology. Oncologists in our survey were experienced in giving bad news, with an average of 35 bad news discussions per month. They tended to agree that discussing the cancer diagnosis was the least difficult task when giving bad news and found that discussing cancer recurrence, failure of treatment to produce an intended result, and the lack of further curative treatment options was more difficult. Oncologists in non-Western countries did not seem to be inclined to withhold the diagnosis of cancer from their patients, and there was no difference between them and Western physicians in the number of discussions about cancer diagnosis. This indicates some change over a previous study on this topic.28 They were, however, more likely to avoid directly disclosing a grave prognosis to the patient and to use euphemisms, withhold the information from the patient at the family’s request, and offer to patients treatment that they knew was unlikely to work so as to maintain patients’ hope. These differences may explain why oncologists from Western countries versus those from other countries reported having more discussions about treatment failure and resuscitation with patients as well as more difficulty in handling patients’ emotions after giving bad news. However, among physicians in Western cultures, 33% also said that they occasionally and 19% frequently used euphemisms in discussing a grave prognosis with the patient; and 24% said that they occasionally administered treatment that was not likely to work to maintain hope in the patient. Results from our study provide intriguing preliminary data regarding possible cultural differences in delivering bad news to cancer patients. It should be noted, however, that our categorization into "Western" and "other" combines physicians from a variety of countries with different cultural backgrounds and beliefs, and there are likely many differences within these two broad categories. Future studies are needed to examine more closely and more specifically the nature of cultural differences in these communication practices. The role of families in supporting patients through their illness is important, and they may also have an important influence on giving negative information to the patient. In Egypt, for example, it is prescribed that the patient must be allowed to be dependent, free from worry, and not involved in decision making about serious illness, which is left up to the family.22 Similarly, in Brazil, it is reported that the family becomes united in the face of serious illness, views it as their obligation to protect the patient from distress, and therefore plays a major role in decision making about cancer care. Family members often meet with the physicians before they see the patient, and the family frequently requests that the physician not discuss with the patient the diagnosis, prognosis, or other aspects related to the patient’s cancer. Anderlik et al29 found that among US physicians who were requested by family members to withhold information from patients of cultures in which it was common not to disclose bad news, 27% said that they acceded to the request not to discuss the diagnosis from half of the time to almost always. Another 29% said that they would withhold discussion of the prognosis from the patient at the family’s request most of the time or almost always. In the current study, only 17% of Western oncologists said that they occasionally and 5% said that they always withheld a grave prognosis from the patient at the family’s request. Some would argue that even in Western cultures, it is the therapeutic privilege of physicians to decide how much information to disclose to patients, on the basis of their patient’s cultural norms or their cautious judgment of how much harm this would do to the individual.23 Our data indicate that this flexible approach toward tailoring the delivery of information was practiced by at least some of the physicians from Western cultures and many from other societies. Indeed, even in Western cultures, there are ethnic groups whose cultural practice involves shunning negative health information or leaving medical decisions to others.30,31 However, in Western cultures, these instances are less common and the argument that bad news can be unilaterally withheld to protect the patient, a practice common in the 1950s,32 is now considered paternalistic. In explaining the motives for withholding bad news, it may be difficult in many instances to disentangle cultural practices and the practice of beneficence toward the patient from the family’s or physician’s reluctance to disclose negative information because of their own anxieties.33-35 No matter what the motive, many patients in other countries are beginning to desire more information about their cancer26,36 so that the risk of a disconnect occurring between doctor and patient concerning preferences for information may increase. To resolve the issue of what to tell patients, some have suggested another approach, which respects both the principle of autonomy and that of beneficence toward the patient.37 This strategy leaves it up to the patient to decide how much information he or she wants and how much family involvement there should be in decision making. In addition to empowering patients, this patient-focused beneficence could assist in relieving the physician of the responsibility of making the sole judgment as to whether the information will do harm to the patient. Asking the patient directly and early on how he or she would like information handled allows him or her to exercise autonomy in deciding who should be the recipient of information and to change their mind at a later date if so desired. In addition to exploring further cross-cultural differences in information disclosure, future research should focus on sex differences in this area. In our sample, women found it easier than men to discuss hospice referral and were less likely to withhold prognosis from the patient at the family’s request, use euphemisms, and give patients specific probabilities of a treatment not working. Although sex differences have been noted in studies of physicians who treat non–cancer populations,38 they have not been previously noted in studies on patients with cancer. Additional research on large numbers of both male and female physicians is needed to clarify further the sex differences regarding practices in breaking bad news. There are only a small number of studies on how oncologists give bad news to patients. The findings of this study are suggestive but must be regarded as exploratory because our sample size was small. We also used a selective sample in that the participants were not randomly selected and represented physicians who were interested in obtaining educational material on breaking bad news. Whether this selection bias indicates that they struggled more with the issues addressed in the present study is impossible to determine. In addition, some of the findings comparing different groups should be viewed with caution because of the number of analyses performed. However, after controlling for at least three covariates, many of the differences were significant at P < .01. Practicing oncologists are able to identify clearly the barriers to giving bad news.25 These include how to respond to patient emotions, give hope when the situation is bleak, and handle difficult family issues, such as anger and denial. The findings of this study not only highlight the importance of providing educational programs that teach physicians how to communicate bad news to patients but also suggest the need to tailor educational programs in communication skills to the cultural background of the physician, the cultural issues facing the physician in his or her practice, and the physician’s own beliefs regarding the disclosure of unfavorable information to cancer patients.
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Copyright © 2002 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
