Abstract
Background
Respect for patient autonomy has become the guiding biomedical ethical tenet in the West; yet, moral values are contextual and culturally relevant. In the collectivist society of the Middle East, families and physicians have historically believed that concealing truth about a terminal illness is more ethical and compassionate. Recent studies reveal a trend toward truth disclosure.
Objective
To gain insight into resident experiences with, and barriers to, truth disclosure in terminally ill patients in the United Arab Emirates (UAE).
Methods
Focus group interviews were conducted with first through fourth year internal medicine residents and recent graduates at two large academic medical centers in the UAE. Qualitative thematic content analysis was used to identify themes related to communication and truth telling in end-of-life care.
Results
Residents revealed that non-disclosure of medical information in serious illness is a common practice in UAE hospitals. Barriers to truth telling include family objection, deficits in medical training, and inconsistently implemented institutional guidelines.
Conclusion
Educational and policy interventions are needed to improve physician-patient communication, decrease patient-family-physician tension, and alleviate trainee moral distress.
Introduction
The complete and transparent disclosure of medical information is a complex process, particularly in the context of serious illness. To navigate these often difficult situations, health care professionals are guided by ethical principles, namely patient autonomy, beneficence, non-maleficence, and justice. 1 In the United States and many Western countries, respect for patient autonomy has become the guiding biomedical ethical tenet. 2 Closely tied to this practice are the concepts of truth disclosure and informed consent. However, it is widely accepted that moral values are contextual and culturally relevant, and the relative priority given to autonomy, beneficence, and non-maleficence can be shifting and fluid in different social, religious, and cultural contexts. 3
Patient autonomy becomes particularly important when dealing with end-of-life issues, as patients may physically and cognitively deteriorate, leaving family members more involved in decision-making. In family-centered and collectivist societies, it is believed that autonomy and truth telling can place undue burden and isolation on the dying patient. 3 As such, providing culturally appropriate care may increase consideration of beneficence and non-maleficence above patient autonomy. However, this belief is often based on anecdotal evidence, and the data are limited and sometimes conflicting. Whereas, several studies have documented that terminal patients who participated in end-of-life decisions had better control of their illness, fewer futile interventions and improved quality of life and quality of death,4,5 other studies have found that awareness of a terminal prognosis decreased patient quality of life and survival time.6,7
In the Middle East, the social structure is based on family bonds, instead of individualism. Cultural values that preserve family hierarchy and stability can influence health care strategies, particularly in times of serious illness. 8 The extended family plays a vital role in decision-making and disclosing information. Family members may actively withhold diagnostic or prognostic information from the patient in order to maintain the patient’s hope or because of the belief that only God can determine one’s fate. 9 In several studies, families and physicians express their belief that concealing the truth about a terminal illness is more ethical and compassionate.10,11 For example, a survey of physicians in Lebanon reported that approximately 40% only disclosed information to terminal patients when family members consented. 10 In a 1997 study conducted in the United Arab Emirates (UAE), 88% of physicians felt that it was acceptable to disclose information to the family rather than the patient. 11 Even Western trained physicians are often noted to adopt cultural and historical truth-concealing policies. 12 Locally developed frameworks for medical professionalism in the Middle East emphasize the role of the family and community in patient care. 13 Recent studies, however, show that norms may be changing. In a survey of cancer patients in Egypt, 91% preferred to be informed of their diagnosis. 14 In this regards, the timing and degree of truth disclosure in serious illness can be a source of tension among patients, families, and the health care professionals that care for them. Medical residents can serve as an important source of information into emerging attitudes and patterns of health care delivery. The purpose of this study was to gain insight into resident experiences with, and barriers to, truth disclosure in terminally ill patients in the UAE. Understanding the perspectives of the future health care workforce can help inform educational interventions and health policy.
Methods
Theoretical Framework
The theoretical underpinning of this study is based on Roter and Fallowfield’s model of patient-centered care, which recognizes the network of relationships and contexts in which patient illness occurs. 15 Important elements of this model include understanding how expectations and feelings regarding diagnosis, and their effect on the patient’s relationships, affect patient and family-centered communication.
Setting
The study was conducted at two large academic medical centers in the United Arab Emirates. UAE national law requires physicians to inform patients about their condition and treatment, but allows for disclosure to family members if the patient lacks mental or physical capacity for decision-making. 16 Patient rights policies in the UAE hospitals studied entitle patients to full disclosure of information regarding diagnosis and prognosis.
Data Collection
This paper is part of a larger multi-institutional and multidisciplinary mixed-method study of palliative care education in UAE. An interview guide was developed by one of the authors (TH), who has had formal training in palliative care and medical education, and was revised after piloting on three recent residency graduates. We conducted nine focus group interviews from March 2019 through February 2020 with first through fourth year internal medicine residents and recent graduates. The program coordinator arranged the focus groups and sent email invitations to all trainees. Participation was voluntary and no incentives were offered. Residents were grouped by year level. One of the authors (Halah Ibrahim) conducted all of the focus groups in English. Of note, medical education in the UAE is in English. Each focus group consisted of five to seven participants and lasted 50–80 minutes. The sessions were audio-recorded and transcribed verbatim by professional transcriptionists. Transcripts were anonymized prior to data analysis, except for resident year level and gender. All participants provided written informed consent. Data collection and analysis occurred concurrently. Recruitment was stopped once no new themes emerged.
Data Analysis
Both authors conducted all data analysis manually. We performed a qualitative analysis using a thematic content approach. 17 Initially, we read through all the de-identified transcripts to gain an overall view of responses that focused on patient-family and patient-provider relationships. Then, each investigator independently performed line-by-line coding on the transcripts and generated initial codes. For this manuscript, we used thematic content analysis to identify recurring concepts and patterns in the coded data that related to relationships, communication and truth disclosure, which were then categorized through constant comparison, into themes. 18 Discrepancies were resolved through in-depth conversations. This coding scheme was then applied to all the transcripts. We achieved saturation for thematic content related to truth disclosure after reviewing six transcripts, but we analyzed and reported the data from all the focus groups. We used the Standards for Reporting Qualitative Research (SRQR) checklist when writing our report. 19 The study was approved by the Sheikh Khalifa Medical City institutional review board in Abu Dhabi, UAE (RS-564).
Team Reflexivity
The authors completed their medical training in the United States (Halah Ibrahim) and Canada (Thana Harhara), where emphasis is placed on patient autonomy and informed consent. To minimize our individual bias towards truth disclosure, we regularly discussed and reflected on the ways our training and professional experiences could influence the analytical process.
Results
We conducted nine focus groups; seven groups were comprised of internal medicine residents, and two groups consisted of recent graduates from the residency programs. Of the 73 trainees and graduates in both programs, consisting of 50 women and 23 men, all were invited to participate and 52 agreed (71%)—40 women and 12 men. The larger percentage of women participants is consistent with the female predominance in UAE residency programs. Mean age was 27.7 years. Participants were evenly distributed amongst the year groups (12 first year, 12 second year, 10 third year, 11 fourth year, and 7 graduates). Three major themes emerged: (1) non-disclosure of medical information is a common practice; (2) non-disclosure is a source of substantial moral distress for residents; (3) residents perceive several barriers to truth disclosure in serious illness.
Non-disclosure of Medical Information is a Common Practice
The majority of residents admitted that non-disclosure of diagnostic information to the patient, especially when cancer is suspected or confirmed, is the norm, rather than the exception. Residents also reported rarely informing patients directly of a poor or terminal prognosis, even when the patient specifically asked. Instead, medical information is first disclosed to the family, and in some situations, to friends. Family members rarely shared bad prognoses with the patients. A first year resident described: I had one patient on hematology, she was in her forties and she knew that she was going to die. But most of the others, the family makes the decision. They don’t want us to inform the patient. (first year male resident)
A resident in her second year of training admitted that she has never engaged in advanced care planning conversations with patients. She reported “Most of my encounters have been with the family, and not with the patients themselves. I’ve never had a conversation with the patient.”
Non-Disclosure is a Source of Substantial Moral Distress for Residents
All of the residents experienced a range of negative emotions related to truth concealment, including hopelessness, guilt, shame, and despair. These negative feelings impacted their care of the patient and led to maladaptive coping mechanisms, including avoidance. One resident reported: And then there are times, and these are the more uncomfortable times, where the patient will be asking you if there is something wrong with them, and we straight out lie to them and don’t tell them what’s wrong because the family doesn’t want us to. Besides feeling guilty, you just feel terrible. At the end of the day, you’re the one talking to the patient and everyday he asks “what’s wrong with me? What’s wrong with me?” ... I’m just compelled to keep a straight face and say “we’re just running tests” and it becomes crippling. (fourth year male resident).
Another resident described an encounter with a patient recently diagnosed with a terminal malignancy and his family chose not to disclose the diagnosis. I hate it (non-disclosure). I have an example that’s going to be stuck with me for the rest of my life I feel. We had an eighty-year-old patient, but he wasn’t your typical 80-year-old. He was a fully competent, fully functional 80-year-old. He had cholangiocarcinoma and it was written very clearly in the file in bold letters and the biggest font: “Do not tell the patient the diagnosis. The family does not want the patient to know.” He was begging me to tell him what was going on. I felt like I was helpless because I couldn’t tell him what was really going on. I felt like that wasn’t my decision to make. In the end, I chose not to tell him. He went into a coma a week after that conversation and he died a few weeks later. I felt terrible. I feel like he had every right to know his diagnosis. He was specifically asking me what was wrong with him. He had the right to know. He had the right to know that he was dying so that he could spend the rest of his days however he wished-maybe not in the hospital, maybe with his family (first year male resident).
Residents Perceive Several Barriers to Truth Disclosure in Serious Illness
Patient and Family Factors
Residents frequently reported family reluctance or objection to disclosing information to the patients. A resident described: Many times, the family will tell you not to tell the patient. The family says if you tell him, then he’s going to be depressed or what not, but then it is expected to feel sad at the end of your life, but it’s part of palliative care to manage that (fourth year female resident).
On occasion, this caused internal disagreements within the family. One resident explained: Sometimes you have conflicts within the family. This son wants something and the other son wants something else. One time I had a case where the patient was married to two and he had a son from each wife. We had a big discussion, but we couldn’t get a decision (first year male resident).
Health System and Regulatory Factors
Residents at both institutions frequently questioned the legality of truth concealment, and were unaware of any institutional or national policies regulating informed consent or truth disclosure. One trainee asked: What would happen if I disclose information to a patient? Like if the family doesn’t want me to? There’s nothing clear. We just know that the family wishes not to disclose information and we talk to the patient and pretend like nothing is happening. I just don’t know the outcome if I disclose. (first year female resident).
Another resident had concerns about patient autonomy guidelines We’re not really respecting the patient’s autonomy when we’re telling the families before we tell the patient. I don’t know if we can discuss with the patients themselves. The patient should decide for himself. Sometimes he is communicative, but the family does not want to share or tell him about the prognosis. They make the decision without him. I noticed that the family does not want to engage the patient in these decisions. I don’t know if it’s legal for me to tell the patient or not. (fourth year male resident).
Education Factors
The residents all reported receiving education on breaking bad news, and most trainees had opportunities to witness end-of-life conversations, especially during critical care rotations. One senior resident described: So for me, I learned it (end-of-life communication) in the ICU mainly. With family meetings when the patient is deteriorating, I would see the consultant (senior faculty) talking to them and watch how to open up the discussion, how to start answering their questions, how to try and make them choose what is right for them just by giving them all the options and addressing everything and telling them about the consequences of an action that is needed to be taken. That is one way of learning it (third year female resident).
However, the residents admitted that they often received conflicting information about truth disclosure from their faculty. One resident described: A lot of the patients don’t even know that they have cancer, for example. And that is so troubling, so troubling. And sometimes, even consultants (senior faculty) tell us “don’t say anything. Here, it’s different. If you tell the patient, maybe he will be emotional so don’t do it.” I will disagree, but I have to do what I’m told (fourth year male resident).
Senior residents and recent graduates, who completed rotations in critical care and hematology/oncology services, were more likely to disclose the truth to their patients, as compared to their junior colleagues. A fourth year resident explained: I think our experience has evolved. We’ve gained some confidence. In the beginning, it was the land of the lost. We didn’t know what was happening and we didn’t know how to approach this. But now, I’m asking families more and more to tell the patient. If they’re not willing, I say I can get the oncologist with us. We’re stressing on doing the right thing and reminding everyone that we need to do the right thing-even in terms of dosages of pain medications, unnecessary investigations, or procedures which will do nothing. I think we stick to what we think is right. (fourth year male resident).
Another senior resident agreed: I take the patient’s permission, even if the family is overly involved. I had this experience once with a young male patient. The family wanted to make the decision instead of him because he didn’t know about the diagnosis. He really did know, but was in denial. He was terminal. I refused to take permission from the family. I explained to them that this is his right to know about his condition and his right to make his own decisions. I talked to the patient with the family and they agreed together about their management. (fourth year female resident).
Discussion
Studies have confirmed poor concordance between patient end-of-life wishes and family preferences. 20 It has also been documented that family caregivers inaccurately predict patient preferences for life sustaining treatments. 21 However, in many cultures, including the UAE, physicians often choose to disclose information about terminal diagnoses to family members first, or to conceal the information from the patient at the family’s request. 22 Our study of the experiences of internal medicine residents confirms that non-disclosure of truth in serious illness is a common practice in UAE hospitals. We found that the most common barrier to truth telling was the lack of physician understanding of legislation or hospital policies concerning patients’ rights to medical information. Though the UAE hospitals studied had clear institutional policies addressing patients’ right to medical information and informed consent, physicians struggled with truth disclosure, particularly when families were in disagreement. Information sessions with hospital regulators may help alleviate some of the confusion and legal concerns.
Although the trainees frequently cited family reluctance as a major obstacle to truth telling, it is notable that, in most situations, the senior faculty independently opted to disclose to the family first. The inability or unwillingness of physicians to discuss terminal issues directly with their patients is especially problematic in that it may represent a paternalistic approach to truth disclosure, and contradicts the concepts of patient-centered care and communication that are emphasized in medical training. 23 Moreover, residents had fewer opportunities to witness effective end-of-life communication with patients. This finding is consistent with other studies in the Middle East. For example, in a survey of medical students in Lebanon, only 14% had the opportunity to observe a senior physician disclose bad news to patients. 24 Our findings suggest that our physicians would benefit from ethical training to negotiate the complex, changing norms regarding end-of-life communication. Educational interventions are needed for health care professionals at all levels, from residents to senior faculty, to emphasize the role of truth disclosure in the patient-physician relationship and to learn effective mechanisms for communicating in a way that maintains hope while, at the same time, providing information that is sufficient for informed decision-making. This may already be happening. Senior residents in our study provided several examples of disclosing bad news directly to the patients and described effective, culturally sensitive patterns of engaging families in these discussions. Their approaches reflect current recommendations for frequent family meetings and consistent communication between physicians and families. 25 Future studies are needed to better understand why senior resident attitudes towards truth disclosure differ from traditional cultural norms. Specifically, the impact of residency education on trainee perceptions of patient autonomy should be further investigated.
There is little published data on the psychological impact on residents when family members and caregivers prevent them from being truthful with their terminal patients. Medical residents in our study reported considerable guilt and emotional anguish from non-disclosing the truth to their patients. Medical trainees are taught to respect cultural beliefs and practices, but they are not necessarily taught how to manage the ethical dilemmas or moral distress that results from delivering care that may conform with cultural norms, but is antithetical to their personal values. Also, the residents often reported feeling powerless when they felt that truth telling was the most appropriate action, causing further emotional distress, and potentially further complicating physician-family communication. Studies of residents in the United States have also documented truth concealment of cancer diagnoses, with residents subsequently experiencing guilt. 26 Although levels of moral distress are heightened during a crisis, research shows that the effects of morally distressing situations is likely cumulative, potentially leading to burnout and depression. 27 Our study highlights the need for targeted interventions to address trainee moral distress. Programs on medical ethics and conflict negotiation, as well as communication skills building and peer-to-peer support workshops, have shown efficacy.28–30 In the short term, when dealing with family objection to truth disclosure, medical trainees can be supported to report that if they are asked directly by the patient, they have an ethical obligation to respond without lying. This approach may help to alleviate some of the moral distress that comes with lying. Longer-term solutions should incorporate training around protocols for breaking bad news that can be culturally tailored to help physicians approach truth telling through structured goals of care conversations with patients and their families. For example, the “ARCHES” model was specifically designed to enhance communication when families request diagnostic non-disclosure. 31 The steps include: acknowledging the non-disclosure request, relationship building, finding commonality, honoring patient wishes while emphasizing the harm of non-disclosure, providing emotional support, and finding a supportive solution. 31 Standardized training courses in end-of-life communication can help improve physician skills and comfort and facilitate the process of disclosure.32,33
Our study has several limitations. First, the findings are based on the unique experiences of medical trainees in two institutions in the UAE and may not be generalizable to a broader population, although our results are consistent with other studies in Middle Eastern and Asian nations. Focus group participants were primarily women, though this represents the predominance of women in UAE residency programs. Further, only internal medicine residents were included, but we believe the findings are generalizable to all medical trainees. Finally, the focus groups may have discouraged open responses regarding this sensitive topic. Despite these limitations, our findings offer important insights into current truth disclosure perceptions and practices of medical residents in the UAE.
Conclusion
Non-disclosure of medical information in serious illness is a common practice in hospitals in the UAE. Medical residents perceived several barriers to truth telling, including family objection, deficits in medical training, and inconsistently implemented institutional guidelines. Educational and policy interventions are imperative to improve physician-patient communication, decrease patient-family-physician tension, and alleviate trainee moral distress.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Research ethics and patient consent
The study was approved by the Sheikh Khalifa Medical City institutional review board in Abu Dhabi, UAE (RS-564). All participants provided written informed consent.
Data Availablity
Data is available from the author upon written request.
