Japanese Journal of Clinical Oncology Advance Access originally published online on February 3, 2009
Japanese Journal of Clinical Oncology 2009 39(4):201-216; doi:10.1093/jjco/hyn159
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© The Author (2009). Published by Oxford University Press. All rights reserved
Preferences of Cancer Patients Regarding Communication of Bad News: A Systematic Literature Review
1 Research Fellowships of the Japan Society for the Promotion of Science for Young Scientists
2 Psycho-Oncology Division, Research Center for Innovative Oncology, National Cancer Center Hospital East, Kashiwa, Chiba, Japan
For reprints and all correspondence: Yosuke Uchitomi, Psycho-Oncology Division, Research Center for Innovative Oncology, National Cancer Center Hospital East, Kashiwanoha 6-5-1, Kashiwa, Chiba 277-8577, Japan. E-mail: yuchitom{at}east.ncc.go.jp
Received September 1, 2008; accepted December 24, 2008
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Abstract |
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 TOP Abstract INTRODUCTIONSEARCH STRATEGY AND SELECTION...RESULTSDISCUSSIONCONCLUSIONFundingConflict of interest statementAcknowledgementsReferences |
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Most physicians regard the communication of bad news to be a difficult issue in clinical oncology practice. The optimal manner of communicating bad news to patients so that physicians can create maximal understanding in patients and facilitate their psychological adjustment is unknown. A systematic review of the literature was conducted to clarify available knowledge on patient preferences regarding the communication of bad news and associated factors. A comprehensive computer search of databases (MEDLINE and PsychINFO) and a manual search identified 24 studies. The above issue has been discussed mainly in Western countries. Most studies used different measures to obtain information on patient preferences and have provided mostly descriptive evidence. The findings in this review suggest that patient preferences with regard to the communication of bad news by physicians consist of four components: setting, manner of communicating bad news, what and how much information is provided and emotional support, and that patients' preferences are associated with demographic factors. Younger patients, female patients and more highly educated patients consistently expressed a desire to receive as much detailed information as possible and to receive emotional support. Asian patients were shown to prefer that relatives be present when receiving bad news more than Westerners do and to prefer to discuss their life expectancy less than Westerners. Physicians need to recognize these preferences to help patients understand.
Key Words: communication • patient preferences • bad news • review
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INTRODUCTION |
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TOPAbstractINTRODUCTIONSEARCH STRATEGY AND SELECTION...RESULTSDISCUSSIONCONCLUSIONFundingConflict of interest statementAcknowledgementsReferences |
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Communication between physicians and patients is a fundamental aspect of cancer care, especially when bad news is being communicated. Bad news consists of any information likely to drastically alter a patients' view of their future (1) and includes information regarding diagnosis, recurrence and treatment failure in clinical oncology settings (2).
The manner in which physicians communicate bad news concerning cancer can affect the degree of the patient's distress in response to the news (3–5). Significant associations have been founded between physician support and low levels of distress and helplessness/hopelessness and a high ‘fighting spirit’ level (6). On the other hand, the problems physicians face when communicating bad news to their patients include a lack of sufficient time, being honest without causing distress (7), dealing with the patients' families, responding to the patients' emotions (7,8) and discussing life expectancy (8).
Because of the above issues, communication between patients and their physicians needs to be facilitated further (9), but there is a lack of guidance for physicians with regard to the optimal way to approach the communication of bad news. Since patients' preferred manner of communication of bad news by physicians has recently been shown to be related to a lower level of psychological distress and a higher level of patient satisfaction (10), some recent studies have focused on preferences regarding communication style, such as what information to give and how to convey it. Our own in-depth interview-and-questionnaire survey in Japan showed that the cancer patients preferred that physicians spend sufficient time to discuss their illness with them, discuss the impact of their disease and treatment on their daily activities, facilitate their understanding, and encourage and allow expression of their emotions (11,12). In order to provide guidance to physicians when communicating bad news and to clarify this issue, we systematically reviewed the literature on cancer patients' preferences regarding communication of bad news by physicians, and associated factors.
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SEARCH STRATEGY AND SELECTION CRITERIA |
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TOPAbstractINTRODUCTIONSEARCH STRATEGY AND SELECTION...RESULTSDISCUSSIONCONCLUSIONFundingConflict of interest statementAcknowledgementsReferences |
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A search of two relevant databases, MEDLINE and PsychINFO, was conducted up to and including November 2008 by using the following search terms: (Cancer OR Oncology OR Palliative care) AND (Communication OR Relationship) AND (Bad news OR Prognosis OR Unfavourable news OR Truth disclosure OR Truth telling) AND (Patients' preferences OR Patients' perspectives OR Patients' views). The search was restricted to papers published in English.
The two reviewers excluded non-original articles and duplicates from the resulting list, and then selected studies based on an eligibility checklist and agreement between the two reviewers. The eligibility criteria were: the aims of the study included identifying cancer patients' preferences regarding communication of bad news to them by physicians, the study method adopted was an interview or questionnaire survey and the results included data regarding the preferences of cancer patients. Studies involving participants with illnesses other than cancer but in which a substantial proportion of the participants were cancer patients were included. Studies that involved a non-clinical sample, e.g. surveys of the general population regarding a hypothetical cancer scenario, were excluded. Some studies included participants with different types of cancer and different stages of disease. A manual search of the references cited in the articles that met the criteria for inclusion in the review was also conducted.
The results of the studies were shown as summaries of patient preferences for communication of bad news and of factors associated with patient preferences for communication of bad news. These two aims guided the organization of the results.
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RESULTS |
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TOPAbstractINTRODUCTIONSEARCH STRATEGY AND SELECTION...RESULTSDISCUSSIONCONCLUSIONFundingConflict of interest statementAcknowledgementsReferences |
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The initial search yielded 266 articles. After excluding articles on the basis of the above criteria (247 articles) and adding articles retrieved in the manual search (5 articles), we identified 24 articles that met our selection criteria (11–34). Studies that addressed more than one of the two aims are listed in Table 1. Cassileth et al. (13) first reported in 1980 that patients prefer to be informed of bad news and to participate in medical decisions. The majority of the selected 24 articles was of studies conducted in Western countries (13–28,30,33,34), only 5 were conducted in Asian countries (11,12,29,31,32). As expected, given the exploratory nature of the patients' preferences regarding communication of bad news, the majority of the articles was qualitative or descriptive studies that used unvalidated measures. Four of the studies used a validated questionnaire, the Measurement of Patients' Preferences, developed by Parker et al. (21,25,31,32) in the United States. In 17 of the studies, the subjects had different types of cancer (11–19,21,23,24,29–32,34). The other studies surveyed patients with head and neck cancer (20), melanoma (22), prostate cancer (25), haematologic cancer (26), breast cancer (33) and unspecified cancer (27,28).
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Patient Preferences for Communication of Bad News
Nine studies examined the components of patient preferences for the communication of bad news (11–13,16,21,23,25,26,31,32). Two of them were conducted by means of in-depth interviews, exploring this issue by content analysis (11,26), and the other seven studies were questionnaire surveys followed by factor analyses (12,16,21,22,25,31,32). These nine studies reported identifying from two to six different components of patient preferences. We have summarized these components in Table 2 and identified four main structural components: ‘setting’, ‘manner of communicating bad news’, ‘what and how much information to be provided’ and ‘emotional support’.
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Nineteen studies reported the most preferred manner of communication based on these components by using descriptive data such as proportions or mean scores (12–25,27–33).
Setting
Seven articles identified setting (11,12,21,25,26,31,32) as component, which included face-to-face consultation (15,19,24,29–31), sufficient consultation time (11,21,22,25,26,32) and privacy (11,15,22). There was high inter-individual variation in patients' responses regarding their preferences as to whether relatives should be present: 40–78% wanted to be told the bad news while their relatives were present, but 10–81% wanted to be alone (12,14,18,20,22,27,28). Very few patients (0–17.5%) desired the presence of other health professionals (12,18,22,28). Physicians should be trusted by and familiar to their patients (11,12,21,25,31,32), should turn off their beepers to avoid interruptions (11,32) and should greet the patient and family members politely before beginning the consultation (11,32).
Manner of Communicating Bad News
Four articles identified this component, which deals with how physicians should communicate bad news to their patients during consultations (11,12,26,32). Most patients preferred that their physicians communicate the bad news clearly (11,12,18,22,31,32) and honestly (11,14,32), in a manner that facilitates each patient's full understanding; this includes choosing words carefully, avoiding medical jargon, showing actual X-ray films and laboratory data, and providing written explanations as needed (11,12,21,22,25,26,31,32).
What and How Much Information to be Provided
Nine articles identified what and how much information is to be provided, which refers to the nature and the amount of the information provided by physicians during consultations in which bad news is communicated (11,12,16,21,22,25,26,31,32), as a component. Four relatively early studies reported that almost all patients (96–98%) wanted to be told whether their illness was cancer (13,17,19,23). Ten studies showed that many patients (57–95%) wished to receive all the information available, both good and bad (14,16–19,22,23,25,27,30). Four studies reported that most patients wanted to know about their chance of a cure (91–97%) and how effective the treatment of their cancer was (79–98%) (13,17,19,23). However, four studies suggested that a lower percentage of patients (27–61%) wished to discuss their life expectancy (12,18,22,24). Furthermore, 12 studies showed that patients wanted to receive information regarding their treatment, e.g. information regarding all available treatment options, the recommended treatment option, the latest treatment and research, the future treatment plan, and adverse effects and risks of treatment (11–13,16,19,21–23,25,26,31,32) as well as information regarding the impact of their disease and treatment on their daily activities, e.g. work, food, life-style, rehabilitation and social resources (11,12,18,21,22,25,31,32). Four studies showed whose decision patients preferred was adopted regarding their treatment: the patient, the patient's family, the patient's physician or collaboration (11,12,28,30), but their results were inconsistent.
Emotional Support
Nine articles identified emotional support, which refers to the supportive aspects of communication and includes offering comfort and support to patients, as a component (11,12,16,21,22,25,28,31,32). When communicating bad news, patients desired that physicians considered the patients' and family members' feelings by imagining themselves in their patient's situation (11,12), speaking gently and softly (11,12,14,15,26), talking in a way that inspires hope (11,12,15,22) and without touching or hugging (12,20). After communicating the bad news, patients desired that physicians used supportive expressions to relieve the patients' emotional distress, allowed the patient to express their feelings and reassured them (12,21,22,25,31,32). Telling the patient not to abandon hope until the end was also considered valuable by patients (11,12,16).
In addition, the following components were proposed: encouraging patients to ask questions (32), making a sufficient amount of time available to the patient (26), communicating in a manner that deflected the impact of the diagnosis and that did not limit or delay information (16).
Factors Associated with Patient Preferences for the Communication of Bad News
There were eight studies that among them explored a total of 24 demographic (e.g. age, gender, education), medical (e.g. stage of disease, recurrence) and psychological (e.g. anxiety, fighting spirit, distress) factors, and identified 12 factors that were associated with patient preferences for the communication of bad news (12,13,19,21,23,30–32).
Seven of these eight studies reported that age, gender and education were associated factors (12,13,21,23,30–32). Younger patients, female patients and more highly educated patients consistently desired to receive as much detailed information as possible and to receive emotional support. Younger and more highly educated patients also wanted to participate in decisions regarding their treatment. And two studies suggested that psychological states were associated with patient preferences: higher distress, anxiety and a fighting spirit were associated with wanting to receive as much detailed information as possible and to receive emotional support (12,32). One study suggested that having an average income was associated with wanting more information than having a low income was (19).
Cross-cultural differences were indicated by some patients' preferences. Only 30% or fewer of patients in Asian studies preferred to discuss life expectancy (12,24), whereas 
60% of patients in Western studies preferred to do so (18,22). While 78% of patients in Japan were found to prefer to be told with family members present (12), only 40% in Ireland (27), 53–57% in Australia (18,22) and 61% in Portugal preferred to be told with family members present (28), and 81% of patients in the United States did not wish anyone else to be present when they received bad news (20). Other patient preferences were generally similar across cultures. In most studies, almost all of cancer patients placed a high value on their physicians' expertise and honesty in delivering detailed information about the diagnosis and treatment options and in answering their questions (11–23,25,26,31–34). Likewise, half of the studies reported that patients considered it important for physicians to give patients their full attention, provide them with emotional support and sustain their hope (11,12,14,15,21,22,25,26,31–34).
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DISCUSSION |
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TOPAbstractINTRODUCTIONSEARCH STRATEGY AND SELECTION...RESULTSDISCUSSIONCONCLUSIONFundingConflict of interest statementAcknowledgementsReferences |
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The majority of the studies selected for inclusion in this review used descriptive evidence or qualitative methods to explore patient preferences with regard to the communication of bad news. Most were conducted in Western countries and used different measures to obtain information on patient preferences. However, the results provide some guidance with regard to physicians' attitudes and behaviours when communicating bad news.
Four commonly observed components of cancer patients' preferences were identified: setting, manner of communicating bad news, what and how much information was to be provided and emotional support (11,12,16,21,22,25,26,31,32). Cancer patients' preferences suggested that the elements of non-verbal communication, such as setting, manner and emotional support, are important to cancer patients when physicians communicate bad news to them. These four components of patients' preferences should be assessed before communicating bad news. Information regarding these components would be valuable to physicians, as it would enable them to provide cancer patients with information about their disease in a manner that best meets the patients' needs.
Marked cross-cultural differences were found with regard to some patients' preferences, for example, there was a wide variation with respect to having relatives present when receiving bad news (12,14,18,20,22,27,28) and desire to receive information regarding their life expectancy (12,18,22,24). In family-centred cultures, such as Japanese culture, patients preferred that relatives be present more than patients in Western cultures did, and comparatively fewer patients preferred to discuss life expectancy in Asian cultures. This preference regarding discussion of prognostic information may be related to a study on a good death conducted in Japan by Miyashita et al. (35) that ‘unawareness of death’ was one of the major contributors to a good death, which was very important in Japan.
The findings in this review also suggested a lack of evidence of factors associated with patients' preferences with regard to the communication of bad news. Nevertheless, the findings indicate that these preferences vary according to demographic and psychological variables but not according to disease variables. Younger, female and more highly educated patients and patients with a higher level of distress, anxiety, fighting spirit or moderate-income consistently desired to receive as much detailed information as possible. A prompt sheet containing a list of questions designed to encourage patient inquiries during medical consultations might be a useful tool for such patients (36). Some studies showed that the use of such sheets was associated with an increase in the number of questions patients asked (37–39). Furthermore, younger, female and more educated patients and patients with a higher level of distress, anxiety or fighting spirit also valued receiving emotional support. Balancing hope and honesty is an important skill in physicians (40).
The findings in this review suggested that the results of these studies have the following implications for physician communication of bad news to patients:
- Before consultations in which physicians plan to communicate bad news to a patient, they should spend sufficient time to discuss the disease with the patient and their relatives, and leave their beepers with another medical staff member, such as a nurse, to avoid interruptions.
- Physicians should communicate detailed information regarding bad news clearly and honestly, in a manner that facilitates patients' full understanding.
- When communicating bad news, physicians should consider the patients' and their relatives' feelings by imagining themselves in their patient's situation, speaking gently and softly, talking in a way that inspires hope, without touching or hugging the patient.
- After communicating bad news, physicians should use supportive expressions to relieve patients' emotional distress, should allow patients to express their feelings, should reassure patients and should sustain patients' hope.
- Physicians should discuss information regarding treatment and the impact of the disease and treatment on daily activities with their patients.
- Younger, female and more educated patients as well as patients with higher level of distress or anxiety, and those with a fighting spirit were found to prefer to be given as much detailed information as possible and to receive emotional support. Patients with moderate-income desired more information than low-income patients. Physicians should ask patients about their own preferences because the existence of individual differences was reported in these studies.
Three limitations should be noted. First, almost all of the studies reviewed were descriptive, resulting in a low evidence level. Nevertheless, descriptive qualitative and quantitative research is integral to our understanding of these issues. The second limitation is a language bias, making it necessary to interpret reports from different linguistic areas cautiously. Lastly, since only research published in English was reviewed, studies in Asian countries may have been missed. However, none of the literature references in the studies that were included in the review had been published in other languages.
Our recommendations for future research include studies to identify preferences with regard to the manner of communicating bad news, factors associated with patient preferences and cross-cultural differences by means of validated measures. Such studies would require a rigorous design to provide a strong basis for creating informative guidelines and intervention programmes for physicians and other health professionals concerned with the communication of bad news to patients. The results of this review provide a framework for devising intervention programmes to enhance physicians' communication skills, i.e. for teaching physicians how to communicate bad news in a manner that corresponds to an individual patient's preference. Such intervention programmes may benefit from being designed based on the framework identified in the present report.
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CONCLUSION |
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TOPAbstractINTRODUCTIONSEARCH STRATEGY AND SELECTION...RESULTSDISCUSSIONCONCLUSIONFundingConflict of interest statementAcknowledgementsReferences |
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This systematic literature review revealed that patient preferences with regard to communication of bad news have mainly been investigated in Western countries and that the studies used a variety of different measures to obtain information regarding patient preferences, although most reports contained mostly descriptive evidence. Our findings showed that patient preferences regarding the communication of bad news to them by physicians consist of four components: setting, manner of communicating bad news, what and how much information is provided and emotional support. Patient preferences were found to be associated with demographic factors. Younger patients, female patients and more highly educated patients consistently desired to receive as much detailed information as possible and to receive emotional support. This review also revealed that Asian patients prefer that relatives be present when receiving bad news more than do Western patients and that they prefer to discuss life expectancy less than Western patients.
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Funding |
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TOPAbstractINTRODUCTIONSEARCH STRATEGY AND SELECTION...RESULTSDISCUSSIONCONCLUSIONFundingConflict of interest statementAcknowledgementsReferences |
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This work was supported by the Third-Term Comprehensive 10-Year Strategy for Cancer Control and Research of the Japanese Ministry of Health, Labour and Welfare. M.F. is a Research Fellowships of the Japan Society for the Promotion of Science for Young Scientists.
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Conflict of interest statement |
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TOPAbstractINTRODUCTIONSEARCH STRATEGY AND SELECTION...RESULTSDISCUSSIONCONCLUSIONFundingConflict of interest statementAcknowledgementsReferences |
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None declared.
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Acknowledgements |
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TOPAbstractINTRODUCTIONSEARCH STRATEGY AND SELECTION...RESULTSDISCUSSIONCONCLUSIONFundingConflict of interest statementAcknowledgementsReferences |
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This work was supported by the Third-Term Comprehensive 10-Year Strategy for Cancer Control and Research of the Japanese Ministry of Health, Labour and Welfare. M.F. has a Research Fellowship of the Japan Society for the Promotion of Science for Young Scientists.
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References |
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