|Ahead of print
Nondisclosure of a cancer diagnosis and prognosis: Recommendations for future research and practice
Mahati Chittem, Sravannthi Maya, Shweta Chawak
Department of Liberal Arts, Indian Institute of Technology Hyderabad, Telangana, India
|Date of Submission||18-Aug-2019|
|Date of Decision||11-Sep-2019|
|Date of Acceptance||04-Mar-2020|
|Date of Web Publication||22-Jun-2020|
Department of Liberal Arts, Indian Institute of Technology Hyderabad, Telangana
Source of Support: None, Conflict of Interest: None
Nondisclosure of a cancer diagnosis and prognosis is a common practice in many family-centric cultures wherein cancer is viewed negatively, resulting in family carers opposing truthful communication to patients. Oncologists comply with this request for diagnosis and/or prognosis nondisclosure owing to the cultural milieu, often choosing to describe the disease in less threatening terms such as “tumor” or “fever.” This review provides a snapshot of existing research exploring diagnosis and prognosis disclosure and nondisclosure from the perspectives of the oncologists, family carers, and the patient with a particular focus on the psychological outcomes for patients who are aware versus not aware of their diagnosis and/or prognosis. Further, this review makes recommendations for future research and practice in cancer diagnosis and prognosis communication in India (e.g., communication skills training for family carers and healthcare providers).
Keywords: Cancer, diagnosis, nondisclosure, prognosis
| » Introduction|| |
Many cultures resort to diagnosis and prognosis nondisclosure to the patient. The prevalence of cancer diagnosis nondisclosure among patients in such collectivist cultures ranges from 16.9%–63%, with a higher incidence of nondisclosure occurring in Asia.,, The incidence of cancer prognosis nondisclosure among patients from collectivist cultures ranges from 52%–87%.,, A major and, perhaps, only explanation for the high incidence of nondisclosure is due to the patients' families opposing truthful communication. In collectivist cultures, it is not uncommon for families to gain precedence over the patient to the extent that family carers decide what information is given to the patient, choose the treatment procedures, and are in more direct consultation with the physician than is the patient. Family carers believe it is their responsibility to shield patients from emotionally harmful news, such as a cancer diagnosis/poor prognosis. Therefore, diagnosis/prognosis nondisclosure can be based on the principle of nonmaleficence, which, simply put, is the moral obligation on the part of the family to “do no harm.” Lee and Wu suggested that this need to “protect” patients through nondisclosure may have emerged from the cultural belief that disclosure is akin to a death sentence, so it would be highly insensitive to discuss the diagnosis/prognosis openly with a patient. Families and physicians often offer a substitute diagnosis to patients such as “tumor,” “pneumonia,” and “illness of the brain,” thereby allowing them to maintain nondisclosure but being able to allay patients' suspicions with an alternative explanation or euphemism. Thus, many family carers' diagnosis and prognosis nondisclosure rates found to range from 30.2%–66% and 23.1%–27.8% respectively.,,, Physician and healthcare professionals conform with this cultural aspect by divulging crucial information, especially if it is life-threatening, to the family and leaving it to their discretion as to whether the diagnosis will be disclosed to the patient or not.
Other forms of nondisclosure of a cancer diagnosis/prognosis include partial disclosure, selective disclosure, and collusion. Partial disclosure, also referred to as passive deception/incomplete information disclosure, involves the family and/or physicians sharing general information regarding the illness without disclosing any in-depth/specific details. Selective disclosure occurs when the family reveals only the type of illness information which they assume to be “safe” for the patient. Partial or selective disclosure are associated with increased distress, unfulfilled communication needs, hopelessness, disappointment, and despair among patients. Collusion refers to the “unconscious” or “secret agreement” between two individuals with the intent to conceal information or not discuss it openly., As Stiefel et al.'s study using the Collusion Classification Grid emphasizes, collusion is largely a psychological process (triggers, emotions, and expression) leading to a behavioral outcome (noncommunication). Collusion is maintained when the family perceive the illness to be extremely threatening and believe that the patient will not be able to cope with it. However, collusion can lead to a strained relationship with the family and a poor patient-physician relationship expressed through the lack of trust and hope in treatment, decreased quality of life, and reduced symptom control.,
This review will describe the role of oncologists and family carers in full/complete diagnosis/prognosis (non) disclosure (henceforth referred to as disclosure/nondisclosure) and explore patients' experiences of (non) disclosure, with special focus on the psychological aspects of the cancer experience such as distress and coping will be discussed. The article will also explore the status of cancer diagnosis/prognosis (non) disclosure in India. This article will also make recommendations for future research and practice in cancer diagnosis/prognosis communication.
| » Role of Oncologists in Cancer Diagnosis/prognosis (Non)disclosure|| |
While truthful disclosure is advocated in Westernized medical communities, research showed that physician nondisclosure of cancer diagnosis/prognosis is still practiced in many countries with primarily collectivist cultures. For instance, Hamadeh and Adib investigated truthful disclosure among Lebanese physicians and found that only 47% physicians usually told the patient their cancer diagnosis.
Research indicated several reasons for diagnosis nondisclosure on the part of the physician such as family's request for nondisclosure, disclosure might psychologically disturb the patient, contradictions between laws, lack of training, time, and a conducive environment, and fear for personal safety. For example, Fumis et al. reported that Brazilian physicians' communication with their patients was mainly influenced by their cultural values, such that their attitudes reflected a more paternalistic approach and they were more likely to engage in shared decision-making with the family carer. It was also found that the carers and physicians both believed that sharing information about diagnosis and a poor prognosis may be stressful for the patient and may lead the patient to lose hope to fight the illness. Interestingly, the reasons for not revealing the prognosis by physicians were slightly different than diagnosis nondisclosure. These reasons included family's desire to maintain nondisclosure, their desire to protect the patients from losing hope, finding it difficult to engage in prognosis disclosure as it could precipitate psychosocial issues in patients, and patients' inability to make medical decisions., Indeed, studies on patient's preferences of disclosure of prognosis have reported contradictory findings. For instance, Shen et al. found that most South African patients (76.9%) did not want to know the truth about their poor prognosis. On the other hand, Fumis et al. found that most Brazilian patients wanted to know about their advanced stage of the illness and how long they had to live. Thus, it can be understood from these studies that physicians may find it difficult to assess patients' information needs.
Physicians reported that they found it easier to disclose the diagnosis as compared to disclosing a poor prognosis as they felt that the latter may be more stressful for the patient. Research suggests that prognosis nondisclosure by physicians is linked to their understanding of the prevailing cultural connotations of medical care. For example, “Cheng” refers to “sincerity” in Chinese medical ethics which encompasses patients' right to treatment, right to privacy and confidentiality. At the same time, it also views truth-telling as an insincere act because it could potentially harm the patient. Further, physicians reported complying with family's requests for nondisclosure as they understood their need to maintain the patient's hope by not revealing the truth to them. Therefore, these findings suggest that diagnosis/prognosis nondisclosure may be linked to communication gaps between the physician, family, and patient and, especially prognosis nondisclosure, may be a more complex phenomenon which calls for more nuanced communication skills on the part of the physician.
Recent research evidences a shift in attitudes among physicians from collectivistic cultures toward truth-telling such that more physicians preferred disclosing cancer diagnosis to their patients. For example, Jiang et al. reported that 87.5% of Chinese oncologists preferred informing early-stage cancer patients of their diagnosis. Reflecting similar findings, Naji et al. reported that 69% of Lebanese physicians preferred revealing the diagnosis to their patients and that these physicians were more likely to be younger, worked more hours per week, and were more engaged in teaching. In addition, Fumis et al. in Brazil found that physicians were more likely to disclose prognosis-related information as compared to the family. Further, they observed that physicians (65.3%) believed that the quality of life of patients who knew their diagnosis and terminal prognosis was better than those who did not. Yet, all of the physicians felt that families would not want the patient to know the terminal nature of their illness. Indeed, these trends toward physicians' positive attitudes toward diagnosis disclosure notwithstanding, a majority of Indian oncologists revealed that a primary barrier to truthful communication was family carers requests for nondisclosure and patients not explicitly expressing a desire to know their diagnosis. Thus, these studies highlight the integral role of family carers' in patient care, especially in terms of communication practices, as well as the necessity to explore patients' communication needs.
| » Role of Family Carers in Cancer Diagnosis/prognosis (Non)disclosure|| |
Psycho-oncology research reported that carers from collectivist cultures prefer diagnosis nondisclosure for two common reasons: (i) disclosure is against family/cultural beliefs, and (ii) that it causes emotional distress to patients. For example, Korean carers in a study by Yun et al. said that if patients were disclosed to the truth, they would lose hope and their fighting spirit, and it would cause them psychological and emotional distress. Furthermore, Hu et al. reported that Taiwanese families felt that they did not know how to disclose the diagnosis, and they believed that it was not required to inform elderly patients, and that patients would be better off not knowing the true diagnosis. In terms of prognosis nondisclosure, research consistently indicated that the most frequently cited/observed reasons were using a family-centerd decision-making style, socio-cultural misconceptions about cancer, nonmaleficence, and maintaining hope and avoid anxiety.,
Research suggests that relatives' and patients' views do not always agree, and relatives often misjudge a patient's desire to be told the truth about bad news, both, in the case of the cancer diagnosis and prognosis.,, Yun et al. found that more Korean patients (96.1%) than family members (76.9%) were likely to desire disclosure of a terminal illness. In addition, 71.7% of patients versus 43.6% of families believed that patients should be disclosed soon after the diagnosis, and 78.3% of patients versus 50% of families believed that the physician should be the informant. In addition, a study investigating the attitudes of cancer patients toward disclosure in Saudi Arabia found that 97.62% of patients wanted all the information about their illness, 96.43% of patients wanted to know the benefits and side-effects of the treatment (chemotherapy), and 95% wanted to know about the prognosis.
However, it is important to note that this trend is changing such that families are increasingly viewing revealing the cancer diagnosis favorably, thus closing the gap between patients' and their families' disclosure preferences. Alsirafy et al. reported that 81% of Egyptian family carers preferred cancer diagnosis disclosure to their patient. The authors found that a preference for nondisclosure among carers was associated with them believing that the patients did not know about their diagnosis and when carers did not want to know their own cancer diagnosis. In Saudi Arabia, it was observed that the differences in diagnosis disclosure preferences between patients and carers were reduced with 82.6% of the former and 75.3% of the latter having a positive attitude toward disclosing the truth. The above research highlights that families' reasons for diagnosis/prognosis nondisclosure may be nuanced and is steered by their worries about their patients' reactions and emotional well-being. Therefore, it might be important to understand carers' apprehensions toward diagnosis/prognosis disclosure through the lens of qualitative research to equip them with appropriate communication skills.
| » Psychological Aspects of Diagnosis/prognosis (Non)disclosure among Cancer Patients|| |
A number of studies examined differences in the levels of psychological distress experienced by patients who are disclosed or not disclosed of their cancer diagnosis. Some studies have reported nondisclosed patients to have higher levels of psychological distress. Dégi reported that malignancy of cancer, not receiving chemotherapy, low anomie (sense of social displacement), and depression (severe to moderate) were related to nondisclosure to patients in Romania. In contrast, Tavoli et al. reported that disclosed Iranian cancer patients had higher levels of anxiety and depression. However, Iconomou et al. found no significant difference between Greek disclosed and nondisclosed patients in terms of psychological distress, as also found by Chandra et al. in India and Costantini et al. in Italy. Similarly, Qian and Hou reported that diagnosis disclosure did not increase levels of anxiety or depression among Chinese lung cancer patients. These conflicting findings may be attributed to a host of reasons, such as varied cultures, medical factors, rate of nondisclosure, and a complex interplay between psychological variables and disclosure.
On the other hand, in a family-centric culture, the focus on understanding the psychological outcomes of diagnosis disclosure as opposed to prognosis disclosure remains. Hence, there are relatively fewer studies examining prognosis (non) disclosure. One such study in Japan explored the differences between cancer patients' experiences of being informed about and their preferences to know their prognosis. The authors reported gender differences in patients' preferences to know the prognosis with more men wanting to be informed about their prognosis as compared to women. Interestingly, however, some patients who preferred nondisclosure reported that not knowing about the prognosis helped them to maintain hope.
It is important to note that diagnosis/prognosis nondisclosure can also play a role in how cancer patients cope with their illness. In a study exploring the association between psychological factors and diagnosis disclosure among cancer patients in Romania, Dégi reported that nondisclosed patients were more likely to be depressed, hopeless, and less likely to use problem-focused coping than disclosed patients. Further, Chandra et al. found that Indian nondisclosed patients were more likely to decline treatment for psychological issues arising from the cancer process than were disclosed patients. Indeed, Chittem et al. reported that the relationship between negative illness perceptions and psychological distress was stronger among patients who were nondisclosed than those who were aware of their diagnosis. Interestingly, psychological aspects such as quality of life remained unchanged by the disclosure status of cancer patients. On the other hand, studies on prognosis disclosure reported that awareness regarding prognosis was negatively associated with quality of life, indicating the need to consider individual experiences in receiving prognosis information.,
| » Status of Cancer Diagnosis and Prognosis (Non)disclosure in India|| |
India has a primarily collectivistic culture. Chadda and Deb observed that, unlike Western populations, Indians tended toward family embeddedness to guide their sense of identity, ascertaining appropriate behaviors, and so on. Indeed, Chaturvedi et al. reported that patients and immediate family members were both comfortable with adopting a family-centerd decision-making approach to cancer. Consequently, as Seth posited, this acceptance of the family-centerd decision-making model lends way to collusion between the family and oncologist. Further, using a qualitative approach, Chawak et al. revealed that patients perceived their treating oncologist to be better equipped with medical knowledge, thus expecting that they make medical decisions on behalf of the patient. In contrast to the findings that the patients were accepting of a passive role in their decision making, Datta et al. found that patients preferred to know their diagnosis and be involved in the medical decision-making process, suggesting individual differences in patient preferences.
Cancer incidence is high in India and research observed that Indian cancer patients have “fatalistic” views about cancer and a “huge” lack of cancer awareness. Accordingly, diagnosis nondisclosure was found to be as high as 46%–54.1% in India.,, Given these findings, it is surprising that there is limited research investigating the psychological aspects of diagnosis (non) disclosure in cancer patients,,, One study on carers' reasons and experiences of (non) disclosure in India, and no study exploring (non) disclosure from the perspective of oncologists in India. Chittem et al. reported that involvement in medical decisions, receiving multiple cancer treatments, lengthier treatment timeline, higher perceived understanding of the illness, and making a causal attribution for cancer were related to being aware of one's cancer diagnosis among Indian patients. Subsequently, using qualitative methods, the authors sought to understand families' reasons for disclosure versus nondisclosure. It was found that reasons for disclosing included concern for the patient's emotional well-being, lack of control, desire to prepare the patient, family, patient's personality, and beliefs about longevity/curability of cancer. Reasons for nondisclosing comprised concern for the patient's emotional well-being, family, patient's personality, beliefs about longevity/curability of cancer, obstacles to truthful communication, and the severity of the cancer. The authors noted that carers who disclosed the prognosis reflected on reasons for both disclosure and nondisclosure, whereas nondisclosing carers thought only about reasons not to disclose.
To the best of our knowledge, prognosis nondisclosure is an under-researched area among Indian cancer patients. Laxmi and Khan reported that a majority of patients (92%) expressed a need to know about their prognosis. However, as revealed in the diagnosis (non) disclosure research, it is possible that Indian family carers also perceived disclosure of a poor prognosis as harmful for the patient. This is reflected in Victor et al.'s study which found that more than one-third of the family carers restricted the doctors from revealing the truthful prognosis to their patients receiving palliative care. The authors also observed that most patients who were aware of their diagnosis remained unaware of their prognosis, highlighting possible gaps or difficulties in communication with patients among family carers and doctors.
| » Overarching Conclusions on Diagnosis and Prognosis (Non)disclosure: Recommendations for Future Research and Practice in India|| |
This review found that Indian cancer patients exhibited agency in supportive role allocation and preferred to know the truth about their illness. However, it was also found that Indian patients wanted to be inclusive of their families, i.e., they favored a family-centerd decision-making style. An overarching conclusion which can be drawn from these findings is that it may be beneficial to inquire and take into account patients' wishes regarding disclosure; however, this is dependent on the communication skills of both the family and the patient. Interventions can focus on improving families' abilities to explore patients' needs and desires which can be achieved through asking patients open-ended questions, sharing their feelings and inviting patients to do the same, and checking with patients regularly on their preferred level of involvement in medical decisions. Similarly, these interventions can also focus on cultivating question-asking behaviors among patients such that they are able to learn about various aspects of their illness at the pace they want to. Indeed, recent worldwide psycho-oncology research exploring the effectiveness of question prompt lists (QPL) for patients have shown increased question-asking and improved recall of information. However, these studies developed QPLs with the aim of enhancing the physician-patient relationship and did not take into consideration the role of the family. Therefore, QPLs developed for an Indian cancer population can target methods to include and improve the patient-family relationship and, in turn, their interaction with the oncologist.
Another crucial finding of the review is that Indian oncologists continued to play a vital part in the cancer trajectory and, consequently, remain the primary medical decision-makers. Further, worldwide, communication skills training for oncologists often focuses on the physician-patient interaction and pays little attention to including family during these medical consultations. Communication skills such as breaking bad news or prognosis disclosure are not a formal part of the Indian medical curriculum, although cancer communication is evidenced to be complex and demanding individualized techniques for handling patient-family interactions on the part of the oncologist. Recent literature suggests that Indian oncologists recognized the need to learn these intricate communication skills particularly within the contexts of disclosure, which is perhaps driven by patients' expectations and desire for truthful communication. Therefore, it is important to introduce communication skills interventions in India for physicians which focus on triadic communication which comprise components such as oncologists' skills at alleviating families' fear of cancer, facilitating communication between families and patients, understanding the patient and being aware of their information preferences, and effectively informing patients who want to know of the true diagnosis.,
Financial support and sponsorship
The second and third authors were supported by the Ministry of Human Resources and Development (PhD fellowship).
Conflicts of interest
There are no conflicts of interest.
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