A key finding of this study is that clinicians did not disclose severe medical prognoses or information to patients diagnosed with terminal illnesses. The participants indicated that families typically make decisions for patients and believe that families should be informed about sad news regarding patients with severe prognoses. One of the underlying reasons for this indigenous approach is the vital role that families play in decision-making within Bangladeshi society. In this cultural context, families primarily make decisions for patients, and physicians are expected to assist families in making appropriate medical decisions to safeguard patients’ ‘best interests’. Individual family members may have personal wishes and preferences, but collective familial interests always take precedence.
Farhat Moazam [39] argued that there is a cultural difference between Western and Eastern societies. A difference in healthcare practices compared to Western medical norms emphasises a patient’s right to be fully informed about his or her health status. In many cultures, particularly the U.K. and the U.S., patients have legal rights to be informed about the details of their health conditions, including the potential risks and benefits [40].
Such societies prioritise individual freedom, considering it a fundamental legal right [41]. In these secular cultures, when a competent patient is diagnosed with a serious medical prognosis, such as cancer, the doctors convey the truth to the patient without deception [21, 42]. Patients are encouraged to make decisions about their healthcare based on information provided by healthcare providers. In countries such as the U.K [43], the U.S [44], and many Western European countries [45], physicians are mandated to disclose all relevant information directly to their patients. This type of individualistic approach might be in contrast with the medical practices in Bangladesh, where family involvement in medical decision-making is a cultural reality.
Our research findings also indicate that families often request physicians to withhold true medical information from patients diagnosed with severe illnesses. This phenomenon can be attributed to the influence of family-centredness, filial piety and patriarchy in Bangladeshi Muslim culture. In this society, the family unit holds a leading role, with decisions made collectively and the interests of the family taking precedence over individual preferences.
Multi-generational living arrangements are common, with parents, adult children, and grandparents often residing under the same roof. Parents are highly respected, and junior family members receive care and support from elders. In traditional Bangladeshi patriarchal society, gender roles are typically defined by men leading families. The father is usually responsible for earning for the family, while women manage the household and nurture the children. Extended family dynamics involve all members in the decision-making process. Family autonomy, rather than patient autonomy, is the guiding principle, with decisions made collectively within the family structure.
Islamic collective cultural traditions further reinforce the importance of making decisions as a family unit [46]. The emphasis on family determination over individual autonomy in Bangladeshi Muslim society [47] can have implications for healthcare outcomes. This ethos is like many East Asian Confucian cultures [48]. The absence of patient autonomy and self-determination may impact the quality of care received and the overall healthcare experience for patients in this culture. Despite the lack of a legal framework and regulations supporting informed consent in Bangladesh, the BMDC’s guidelines are consistent with our findings. These guidelines instruct physicians to truthfully communicate the details of a patient’s medical condition to either the patient or his or her family members.
Our finding is consistent with the Confucian culture prevalent mostly in Mainland China [49], revealing that patients often perceive family members as advocates for their “best interests.” Ruiping Fan argued that physicians in East Asian societies, particularly Mainland China, are morally responsible for non-disclosure of the true medical prognosis if such disclosure may cause a severe burden on patients [49].
Another finding of this study is that families allowed physicians to disclose partial information to patients with their approval. The study revealed that the extent of disclosure is influenced by whether families authorise physicians to share information with patients. Additionally, the participants noted that physicians tend to provide information to patients incrementally as patients show signs of improvement during their recovery from illness.
This study identifies lying (deception) as a “therapeutic option” whereby the clinician intends to eliminate harm. Physicians are expected to disclose true information to families. Participants said that physicians discuss with the family how, when and to what extent the information is disclosed to the patient. In such cases, clinicians often use vague terms if necessary, such as telling a patient he or she has a tumour.
A survey of ninety physicians in twenty countries about attitudes towards revealing a ‘cancer’ diagnosis to patients reported that approximately 40% of oncologists from Africa, France, Hungary, Italy, Japan, Panama, Portugal and Spain chose to avoid using the word “cancer” while talking to patients. Physicians reported substituting words such as “swelling (e.g., tumour, growth, lump)” and ‘inflammation’, highlighting significant differences among these countries in terms of communicating information about life-threatening illnesses [50]. The key difference was that not all physicians in these countries disclosed the truth of the diagnosis to their families. Although recent empirical research in Muslim societies, particularly Lebanon, reported a trend towards greater acceptance of revealing a cancer diagnosis to the patient [51], a reluctance to practice full disclosure of information in such cases is still not unusual in many cultures.
Another major finding of this study is that the participants believed that directly disclosing the true medical diagnosis or information of a critically ill patient may be perceived as imposing a significant burden on the patient. The participants expressed the view that patients may struggle to cope with distressing news, leading to the practice of informing families when a severe disease is diagnosed. Applying contemporary ethical norms and medical practices prevalent in many countries, such as the U.K. and the U.S., may not align with Bangladesh’s collective culture.
Chattopadhyay and Simon [22] argued that culture plays a crucial role because it shapes the context in which individuals experience life and understand the moral significance of illness, suffering and death. They emphasised that culture profoundly influences how patients, families and physicians communicate and make decisions in end-of-life care. In several countries, much of Asia and the Middle East, withholding medical information is considered to be more humane and ethical [52]. A key reason participants mentioned was the protection of a patient’s emotional well-being and the reduction of psychological distress. In these cultures, the belief is that directly revealing distressing medical information to a patient may cause unnecessary anxiety, fear or hopelessness. Instead, by disclosing such information to the family, the burden of processing and managing the information can be shared collectively, potentially offering emotional support and comfort to the patient. In Ethiopian culture, for example, there are fears that patients can die from the shock of shocking news; therefore, the family handles determining how the information can be disclosed [53]. The participants also mentioned that patients are deceived and that deception should be an accepted medical practice in Bangladesh. Physicians deceive patients to follow the wishes of their families.
The participants also stated that a physician goes along with a family’s wishes if they are in a patient’s best interests. The participants thought that physicians accept that the family knows the patient well and are better appointed to anticipate their psychological state and how much information they can tolerate. The family wants to prevent a patient’s overburden, particularly if he or she is elderly, and wants to facilitate him or her with ‘dying in peace.’
This is a form of care, particularly for elderly end-stage family members. The concept of ‘death with dignity’, often cited in Western bioethics literature [54], is seldom practiced in Muslim-majority societies, such as Bangladesh. Here, ‘dying in peace’ is a common biomedical practice, especially for elderly patients [55]. This is because families and physicians do not want to overburden patients, as this may cause more psychological harm and the potential threat of dying. A reason for this disclosure relates to the nature of the disease—cancer—which is viewed by many as having a high chance of death. Revealing a diagnosis to a patient has been considered crucial, and the patient’s family believes that such disclosure would lead to a loss of hope, enhancing the patient’s anticipation of death.
Islamic beliefs and practices consistently remind Muslim believers to be prepared for death, as it cannot be delayed when time has passed [56]. One perspective highlighted here is that some might argue that informing patients of their terminal diagnosis might allow them to prepare for death in advance. This approach might enable patients to participate in medical decisions, reflect on their values and experience a more “dignified” death.
In Bangladesh, there may be patients who hold this viewpoint. In Islamic teachings, death is regarded as a natural and predetermined transition from earthly life to the hereafter. Death surrenders to the will of Almighty Allah. For Muslims, the ultimate hope for eternal life rests with the merciful God. Accepting death with patience, gratitude and faith in the divine plan while ‘death with dignity’ may place patients in control over the dying process. By approaching death with acceptance and trust in Allah’s wisdom, Muslims aim to achieve a peaceful transition to the afterlife. Preparing the soul for the next life, Muslim patients navigate the process of dying with grace and submission. For example, in Muslim societies, families may gather around terminally ill patients, recite prayers and provide comfort and support to ensure a peaceful transition.
This approach might reflect a profound respect for the Islamic principle of transitioning from earthly life to the hereafter with peace and spiritual fulfilment. When a family realises that a patient—particularly the elderly—is reaching his or her final hours, families may not allow clinicians to disclose shocking news to their patients so that death will occur with as little suffering as possible (dying in peace) [57]. This is a kind of morality (non-maleficence) that might prohibit families and physicians from fully disclosing a terminal diagnosis to the patient. It is common in other South Asian Muslim societies for extended families and physicians to avoid disclosing the diagnosis to a severely ill patient [39].
A significant finding highlights the prevalent practice of parents or legal guardians making decisions for minors under the age of eighteen in all medical treatments and interventions. In contemporary medical practice, there is an emphasis on involving competent adult patients in decisions regarding their medical care. In many cultures and legal systems, including those influenced by Islamic principles, minors under the age of eighteen lack the legal capacity to make independent decisions, particularly in matters related to healthcare.
Our observations revealed that parents or guardians accompanying minors received medical information and played the role of primary decision-makers. The participants in this study expressed a belief that parents are best positioned to determine what is in the best interests of their minor children, especially in the context of medical decision-making and healthcare treatment.
Bangladesh ratified rights-based United Nations (UN) conventions, including the UN Convention on the Rights of the Child, on June 26, 1990. Article 12 of this Convention underscores the significance of respecting children’s views and emphasises that adults should listen to and seriously consider them. The Convention also affirms that children possess fundamental human rights, including the rights to freedom of expression, to receive information of all kinds (Article 13), of thought, conscience and religion (Article 14) and to privacy (Article 16, paragraph 1). This highlights the importance of recognising children as individuals with rights and perspectives that should be taken into account in decision-making processes, including those related to their healthcare and well-being [58].
Belgian laws permit minors to make their own medical decisions until their physicians consider them sufficiently mature [59]. However, the legal framework governing medical practices may vary from country to country [60]. Like other South Asian societies, parents are typically consulted at all stages of decision-making for their children, as it is believed that children may make improper decisions regarding their health [61]. In countries, including those in Europe such as Bulgaria, Cyprus, Finland, France, Greece, Hungary, Italy, Malta, Romania and Slovakia, minors have no right to make independent decisions about their medical treatments until they reach the age of majority [62, 63].
Our findings also revealed that parents typically make medical decisions for their children (minors) and physicians often hesitate to directly inform minor patients, operating under the assumption that minors might not have the capacity to make appropriate medical decisions for themselves. Mark Cherry argues that minors may lack the cognitive or emotional maturity required to fully grasp complex medical information and potential outcomes [64]. In certain situations, Cherry contended that minors may be more inclined to make different, potentially “riskier decisions” due to emotional factors or an immature perception of the circumstances [64].
Strengths and limitations of this study and suggestions for future research
A key strength of this study lies in its exploration of true medical disclosure, achieved by collecting first-hand experiences from patients, families and healthcare professionals within a Muslim society in Bangladesh. Another key strength is that these findings may help healthcare providers treat Bangladeshi diaspora patients in other countries. Additionally, this study’s findings have the potential to inform future research in regions such as traditional family structures and collectivistic societies [65].
Our study has several limitations. The sample size, although appropriate for the phenomenological approach utilised, was small and confined to a publicly funded hospital in the capital city of Bangladesh. This limited our ability to thoroughly explore our findings across various healthcare settings, such as public hospitals, private institutions, NGOs and international donor agencies throughout the country. Future research could address this limitation by including a more diverse range of participants from different healthcare settings.
Another significant limitation was the absence of involvement from health policymakers and public health officials in the study, which hindered a comprehensive analysis of law formulation and implementation. Including these stakeholders in future research could provide insights into legal regulations, cultural aspects of care and the dynamics of medical information disclosure. This approach could illuminate how patients, families and clinicians engage in decision-making processes related to medical disclosure and healthcare treatment.
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