A Synthesis of the Literature on Breaking Bad News or Truth Telling: Potential for Research in India

Deciding the amount of bad news to deliver

Truth telling requires “greater thought and planning than a drug prescription”[24] because there is no simple answer to questions such as whether or how much information patients want, in what phase of the disease trajectory, and how much bad news health care professionals should give them. Studies done in various parts of the world indicate that a majority of patients want truth about their health condition. Although the samples were not representative in most cases, the proportion of patients or the general public wanting to know the truth about their health could be at least 86% in Japan,[25] 80% in Argentina,[26] 80% in Nepal,[27] 92% in Taiwan,[28] 58% in Spain,[29] 82% in Poland,[30] and 87% of African–Americans, 89% of European Americans, 47% of Asian–Americans, and 65% of Mexican Americans in the United States.[31]

Notwithstanding the above findings, approximately 25-50% of patients with a terminal disease in Australia,[32] Argentina, Brazil, France, Belgium, Switzerland,[33] Japan,[26] Egypt,[34] the United States,[35] North America,[36] Norway, and Denmark[37] are kept in the dark about their health status by physicians. The proportion of such patients could be between 50% and 75% in Spain,[3038] Italy,[39] Nepal,[28] China,[40] and many of the Asian countries.[36] Withholding bad news from patients diagnosed with terminal diseases is very common across the globe, including in countries with higher rates of bad news disclosure.[3437383940]

We found no studies that tell us the proportion of patients in India who want to know bad news and those who expect their family to receive such information and make appropriate decisions for them. There is reason to believe that in general patients want truth about their health because a majority of the patients and family members interviewed by Raja[41] for a qualitative study complained that they received insufficient information on diagnosis and prognosis. They also expressed dissatisfaction about physicians who communicated hurriedly and in a harsh manner. We found only one study done by Purrakkal and colleagues[42] who reported that 62 out of 100 patients undergoing radiotherapy for various types of cancer at Calicut Medical College (CMC) in India were aware of their diagnosis. Forty four of them informed the researchers that they received the bad news from their physician, nine from their family, seven had guessed it on their own, and two by some other means. These results may not be extrapolated to other places in India because CMC is located in Kerala, which is the first among the 28 states and seven union territories of India to achieve a 94% literacy rate,[14] to enact a palliative care policy, and to roll out a community-based program – Neighborhood Network in Palliative Care.[43] Purrakkal and colleagues[42] have observed that the emphasis given to clinical communication training at CMC must have influenced physicians to discuss bad news with nearly 50% of the participants. Muckaden's[44] view that bad news is hidden from about two thirds of patients in India and approximately 15% of patients die without knowing anything about the disease may be a more accurate assessment of this clinical practice.

Future studies in India should examine the expectations of patients from diverse backgrounds about receiving bad news, and whether they believe that the quality and quantity of health information given to them is sufficient to participate in clinical decisions and prepare for life-transitions. It would be useful to establish a baseline about how many patients diagnosed with eventually fatal diseases actually know the bad news, when they learn the bad news, and whether practices related to delivering bad news differ based on the type or severity of the disease. Such a baseline could be used to assess change in this area of health care practice in the years ahead. Other questions to explore include what health care practices patients find helpful in being able to receive and understand bad news, and what makes it more difficult.

Attending to cultural and ethical issues

Variation in the demand for and provision of bad news is also attributed to cultural differences. For example, in some cultures, discussions about terminal disease are avoided because uttering the word “death” amounts to inviting or hastening it.[45] A case study by Kaufert and Lavallee[46] revealed that aboriginal Canadians consider that even parting with a toe amounts to violation of the wholeness of the body and therefore these researchers highlighted the need for cultural sensitivity when disclosing news about amputation. Among some cultures, people believe that adult sons and daughters are responsible for ensuring the peaceful death of their parents and burdening the dying parents with bad news may be perceived by the patient and relatives as dereliction of filial duty.[4748495051]

Often the question whether it is ethical to disclose bad news directly to patients or not is grounded in cultural values. Some physicians believe that they are duty-bound to protect their patients from emotional distress and hopelessness, even at the cost of denying the patients the truth about their health.[25384052] Concealment of bad news is more common in the case of a terminal disease and often justified on the grounds that truth telling condemns a patient to social death, by which is meant treating a living person as if they are already dead.[53] Often physicians discuss bad news and care plans with family caregivers rather than with the patient.[345254] About 90% of the 224 physicians who answered a questionnaire given by Chan and Goh[55] in Singapore felt that it is more appropriate to discuss bad news with the patient's immediate family first, as a way of making decisions about disclosing the news to the patient or not. In contrast, some health care professionals believe that “truth” belongs to the patient.[25333640525456] Literature also identifies situations where the patient's or family's views on truth telling differ from that of the standard procedures or perspectives of health care providers.[4657585960]

Most importantly, research has demonstrated the dynamic nature of culture and therefore the changes occurring in people's beliefs and behaviors related to bad news. Particularly, a shift from a paternalistic perspective on truth telling toward valuing patient autonomy is evident across all societies in recent years but the pace of such change is dissimilar. As early as 1672, French physician Samuel de Sorbiere declared that truth telling is a good idea indeed, but he predicted it would not catch on and it would jeopardize the medical profession.[4] The classical study by Oken[61] in 1961 is witness to the staunchly paternalistic medical culture in the United States a few decades ago, finding that about 90% of the 219 physicians who participated in that study reported that they were withholding news about cancer from their patients. Novack and colleagues[62] replicated the study and found a reverse trend within two decades; this time 98% of the 258 participants stated that they disclosed a cancer diagnosis to patients. Both studies reported a shift in physicians’ attitudes on providing bad news to cancer patients rather than actual practices on truth telling. Recently, Chan and Goh[55] queried 221 medical specialists in Singapore about whether they had noticed a change in the number of patients who demanded information about a bad diagnosis compared to 10 years previously. Approximately 88% of the participants gave an affirmative answer, and moreover, 94% of them said that patients have become more knowledgeable about medicine than the patients a decade before, attributing the change brought about to internet technology. These studies indicate that both health care and societal culture, which is the system of beliefs and values and behaviors, is changing due to a wide variety of systemic and structural changes.

In terms of attitudes about delivering bad news to patients in India, a survey administered by Purakkal, Pulasseri, and Ravindran[63] revealed that more than 78% of 850 medical students, interns, and faculty members indicated that bad news should be disclosed to patients; however, this study does not provide information about how many of those who participated in the study actually discuss bad news directly with their patients. There is reason to believe that nondisclosure is common practice in India due to various sociocultural pressures. For example, Dighe, Jadhav, Muckden, and Sovani[64] reported that among 31 parents of children diagnosed with a terminal disease, 12 refused to disclose the bad news to the children because they thought that the children were unable to bear the shock or were too young to understand the implications of the disease. A cross-sectional comparative study examined attitudes toward informed consent among physicians in the Indian State of Kashmir and Malaysia.[65] Among 48 physicians in Kashmir, 42% reported that they disclose bad news directly to patients, and 35% said that they would ignore the family's request to withhold such information. This study points out that the fear of causing distress, depression, and suicidal thoughts in patients are the main reasons for withholding bad news about serious illness. Chattopadhyay and Simon[66] provided a case example to suggest that attitudes about non-disclosure are disease-specific; Indian society perceives cancer as a “disease without hope,” for instance. Recently, Kumar and colleagues[67] reported that all the 35 radiation oncologists surveyed by them dismissed the view that the condition of patients deteriorates when they know the truth. Again, all participants preferred truth telling to patients, but only 11 of them said that they would not comply with family's request to withhold bad news from patients. Research evidence also suggests that bad news disclosure in India is influenced by the gender of the patient. For example, Purrakkal and colleagues[42] reported that among the 44 cancer patients who received bad news from their physicians, the ratio between men and women patients was 2-1.

In short, these studies provide some insight into physicians’ attitudes about truth telling in India and the external pressure to withhold such information from patients, but shed litle light on the spectrum of psychosocial, cultural, institutional, and existential factors influencing the processes of communicating bad news. There is a great deal of diversity within and across ethno-cultural communities, and various geographical regions in India, but no studies were found that explored the differences among various religious, linguistic, and socioeconomic classes in India. Researchers should examine the diverse cultural values and ethical considerations that impact truth telling preferences in India by conducting studies in different parts of the country and population groups belonging to different religious, cultural ethnic, linguistic, and socioeconomic backgrounds. Studies examining the influence of religious beliefs, for example, cross-sectional studies comparing Hindus with minority faith groups might yield important insights for practice, as might differences among socioeconomic groups. So also more research is necessary to know what creates or perpetuates a culture that either supports or obstructs truth telling with various cultural subgroups. Recently, the need for integrating a gender lens in health research is emphasized across the globe. Hence, more Indian studies to explore the preferences of male and female patients about health information and to explain whether the gender of health care professionals changes truth telling practices in India are timely.

Managing psychological distress

Bad news generates a variety of emotions in patients, family caregivers, and health care professionals alike. Butow and colleagues[68] found that shock (54%), fright (46%), and sadness (24%) are the most frequent emotions in cancer patients upon learning the truth about their illness. Another study explains that diseases such as cancer not only cause physical pain but also generate fear about the loss of functional abilities, diminished sense of control, loss of hope, and anxiety about loss of life.[69] A number of studies have shown that patients and family caregivers highly value a professional's capacity for empathic communication in the context of bad news. For example, Hunt, Elston, and Galloway[70] found that parents of children with progressive diseases are more satisfied with healthcare professionals who communicate caringly rather than those who demonstrate only pharmacologic expertise. Besides verbal sensitivity, the empathic gestures of professionals have a healing effect for parents both when caring for the dying child and during the bereavement period.[71] In short, empathic communication assuages the emotional stress stemming from bad news and humanizes the otherwise pharmacologically and technologically driven healthcare environment.

Health care professionals’ ability to manage their own stress is as integral an aspect of their communicative competence as addressing the emotional reactions of patients and family caregivers. Often the deteriorating condition of their patients causes intense distress for healthcare professionals,[36] which prevents them from disclosing bad news to patients[72] and discussing impending death.[73] For example, a qualitative study done in Sweden[74] described the complex psychosocial stress experienced by 30 oncologists who reported feeling a loss of control in almost all aspects of their life. They found it hard to control their emotions, thoughts about their own mortality, doubts about their professional skills, feelings of helplessness, and loneliness. Such psychosocial stressors are likely to curtail their ability to communicate effectively and with empathy.

Studies by Mohanti and colleagues[75] and another by Supe[76] shed some light on the hardships experienced by medical interns in India in the context of breaking bad news. Kumar[67] who examined the attitudes among 35 radiation oncologists about truth telling has merely mentioned that 21 participants felt depressed after bad news encounters. These studies were not specifically designed to examine the psychological issues confronting health care professionals in the context of truth telling. In contrast, Muckaden[44] focused on the psychological dimension of bad news in women treated for cervical cancer in Mumbai and based on two case-examples, identified anxiety, sadness, suicidal ideation, guilt for seeking treatment late, and anger against physicians for mismanaging the care process. A study by Coenen and colleagues[77] has significance for learning how to support the distressed bad news recipients because this study explored the conceptions of “dignified dying” among 560 nurses in the United States, Ethiopia, Kenya, and India. It has thrown some light on the efforts of Indian nurses to preserve hope among terminally ill patients, provide them with spiritual support, and empathize with them through physical touch. Nevertheless, there is still room for studies to document the psychosocial processes in the context of delivering bad news because we do not know how bad news encounters affect physicians, nurses, social workers, and psychologists in India, and how to they cope with it. This issue can be studied from the view point of patients and their families, as well. Spirituality is another important area related to patient care to persons with eventually fatal health conditions and truth telling. India is known for its spiritual heritage and practices such as Yoga and meditation, but we are yet to see research on the usefulness of applying such spiritual exercises to manage the distress caused by bad news.

Producing competent messengers of bad news

The literature also talks about the need for evidence-based education or training to nurture competence. Until recently, it was customary to speak about a physician's capacity for clinical communication as his or her “bedside manner,” assumed to be largely mirroring his or her personal qualities and not something that could be taught.[78] Clinical communication as a formal subject remained a “minor subset of marginal interest to the field” of health care.[79] Interestingly enough, health care consumers have always been perceptive about the significance of communication for good patient care. The expectations of patients regarding clinical interactions, an increasing volume of research, and access to training programs and courses on clinical communication may have changed the attitudes of medical students and physicians about the significance of communicative competence for patient care in some countries. However, the opportunities for education in clinical communication vary considerably across the globe, and therefore, clinical communication is yet to be perceived by all students and educators as central to medical education.[80]

Health care professionals who do not recognize the need for communicative competence are less likely to consider the training programs on patient-physician communication as important. For example, von Gunten[81] reports a study in which cancer patients and oncologists were asked to suggest an important topic for continuing medical education. About 88% of cancer patients said that the oncologists should be taught to communicate well; about 90% of the oncologists wanted more medical science knowledge. In another study, physicians reported that diagnostic ability is the most crucial skill, whereas patients gave prominence to the listening skills of the physician.[82]

Awareness of the need for communicative competence is but one side of the coin; the other side is access to training programs. The lack of professional development programs to improve the capacity of practicing clinicians,[83] and absence of training related to the existential and spiritual concerns of patients induces a sense of inadequacy among health care providers.[748485] Research has shown that many physicians do not meet the expectations of patients with eventually fatal diseases and medical students do not feel confident to attend to the psychosocial needs of dying patients.

Research evidence also suggests that training programs contribute in great measure towards communicative competence, if the quality and comprehensiveness of such trainings is ensured. Watling and Brown[86] presented a series of case-based workshops on communication skills to 12 Neurology residents. The cases covered topics such as breaking bad news, dealing with “difficult” patients, carrying out patient directives, disclosing medical errors, and discussing death. Most importantly, the participants kept a reflective journal on the scenarios they encountered in their practice. The researchers concluded that together with structured input sessions, the use of personal portfolios such as reflexive journaling may promote life-long learning about clinical communication. Similarly, ongoing professional development forums such as biweekly palliative care seminars contribute to communicative competence.[87] Kersun, Gyi, and Morrison[88] surveyed 171 medical fellows who graduated over the course of five years from a medical college in the UK. The purpose of this study was to evaluate the usefulness of a training program consisting of various activities such as observing senior clinicians, being observed while practicing, reading, lectures, role plays, workshops, and videos related to communication of bad news. These researchers concluded that training may help physicians feel better prepared to break bad news, but opportunities to observe senior clinicians communicating bad news and a greater number of years of clinical practice experience are the most influential factors in instilling a sense of adequacy or competence about communicating bad news.

Mohanti and colleagues[75] assessed palliative care knowledge in 100 medical residents of a tertiary hospital in India and found that 25% of participants reported no knowledge about palliative care, 51% rated the palliative care training given during residency as inadequate, and about the same number of participants expressed a lack of confidence in delivering palliative care. Another Indian study reported that among 111 residents, 86% were familiar with palliative care concepts; however, only 13% expressed confidence in providing palliative care and only 15% of that subgroup felt that they had been adequately trained to deliver bad news.[89] These authors have expressed concern about the prospects of palliative care in India because medical professionals are entering into health care practice without sufficient conceptual knowledge and skills about pain relief, multidisciplinary practice, and communication. Many of the patients interviewed by Raja[41] were confused about their diagnosis and remarked that the nurses knew a lot about their health condition but were unwilling to divulge it. Notably, they informed the researcher that they could not ask the physicians questions or clarifications because the physicians rarely interacted with them as equals.

The incidence of clinical bad news is likely to increase in India because as pointed out by Drummer and Cook,[90] in the past decade the forces of globalization are contributing to the higher incidence of “diseases of affluence” or noncommunicable diseases in emerging economies such as India, China, and Brazil. Therefore, the need for health care professionals who are well trained to communicate bad news can hardly be overemphasized. This, in turn, highlights the urgency of more studies to develop evidence-based and effective training programs related to clinical communication. Fortunately, awareness about the singificance of multisdisciplinary approaches to care for persons and families delaling with eventually fatal health conditions is increasing across the globe. In connection with such a philosophy of patient care, health care professionals belonging to various health disciplines and skills are working in teams to deliver bad news and deal with its outcomes. There is a great potential for designing training programs related to clinical communication to medical, social work, nursing, and spirtual support students within the same cohorts and evaluating its usefulness for changing the current hierarchical flow of health information in Indian clinical settings.