Experiences and preferences of truth-telling in families of children with cancer: A phenomenological study.

Objective: The delivery of bad news is an unpleasant but necessary medical procedure. However, few studies have addressed the experiences and preferences of the families of school-aged children with cancer when they are informed of the children's condition. This study aimed to explore families of school-age children with cancer for their preferences and experiences of truth-telling. Methods: This descriptive phenomenological qualitative research was conducted using focus group interviews and semistructured interview guidelines were adopted for in-depth interviews. Fifteen families participated in the study. The data were analyzed using Colaizzi's analysis. Data were collected from August 2019 to May 2020. Results: The study identified two major themes: "caught in a dilemma" and "kind and comprehensive team support." The first major theme focused on families' experiences with cancer truth-telling. Three sub-themes emerged: (1) cultural aspects of cancer disclosure, (2) decision-making regarding informing pediatric patients about their illness, and (3) content of disclosure after weighing the pros and cons. The second major theme, which revealed families' preferences for delivering bad news, was classified into three sub-themes: (1) have integrity, (2) be realistic, and (3) be supportive. Conclusions: This study underscores the dilemma encountered by the families of children with cancer after disclosure and their inclination toward receiving comprehensive information and continuous support. Health care personnel must improve their truth-telling ability in order to better address the needs of such families and to provide continuous support throughout the truth-telling process.

Ethical and moral principles for oncology healthcare workers: A brief report from a Bioethics consortium emphasizing on need for education.

The medical sub-specialty of Oncology presents diverse ethical dilemmas, often challenging cancer healthcare workers with difficult-to-handle clinical scenarios that are tough from a personal and professional perspective. Making decisions on patient care in various circumstances is a defining obligation of an oncologist and those duty-based judgments entail more than just selecting the best treatment or solution. Ethics is an essential and inseparable aspect of clinical medicine and the oncologists as well as the allied health care workers are ethically committed to helping the patient, avoiding or minimizing harm, and respecting the patient's values and choices. This review provides an overview of ethics and clinical ethics and the four main ethical principles of autonomy, beneficence, non-maleficence, and justice are stated and explained. At times there are frequently contradictions between ethical principles in patient care scenarios, especially between beneficence and autonomy. In addition, truth-telling, professionalism, empathy, and cultural competence; which are recently considered important in cancer care, are also addressed from an Indian perspective.

The Crosswise Model for Surveys on Sensitive Topics: A General Framework for Item Selection and Statistical Analysis.

When surveys contain direct questions about sensitive topics, participants may not provide their true answers. Indirect question techniques incentivize truthful answers by concealing participants' responses in various ways. The Crosswise Model aims to do this by pairing a sensitive target item with a non-sensitive baseline item, and only asking participants to indicate whether their responses to the two items are the same or different. Selection of the baseline item is crucial to guarantee participants' perceived and actual privacy and to enable reliable estimates of the sensitive trait. This research makes the following contributions. First, it describes an integrated methodology to select the baseline item, based on conceptual and statistical considerations. The resulting methodology distinguishes four statistical models. Second, it proposes novel Bayesian estimation methods to implement these models. Third, it shows that the new models introduced here improve efficiency over common applications of the Crosswise Model and may relax the required statistical assumptions. These three contributions facilitate applying the methodology in a variety of settings. An empirical application on attitudes toward LGBT issues shows the potential of the Crosswise Model. An interactive app, Python and MATLAB codes support broader adoption of the model.

Truth-telling to the seriously ill child - Nurses' experiences, attitudes, and beliefs.

BACKGROUND: Nurses play an integral role in the care of children hospitalised with a serious illness. Although information about diagnostics, treatments, and prognosis are generally conveyed to parents and caregivers of seriously ill children by physicians, nurses spend a significant amount of time at the child's bedside and have an acknowledged role in helping patients and families understand the information that they have been given by a doctor. Hence, the ethical role of the nurse in truth disclosure to children is worth exploring. METHODS: A systematic academic database and grey literature search strategy was conducted using CINAHL, Medline Psych Info, and Google Scholar. Keywords used included truth, children, nurse, disclosure, serious illness, and communication. A total of 17 publications of varying types were included in the final data set. ETHICAL CONSIDERATIONS: As this was a review of the literature, there were no direct human participants. Empirical studies included in the review had received ethics approval. RESULTS: Of the 17 articles included in the review, only one directly reported on the experiences of nurses asked to withhold the truth from patients. Empirical studies were limited to HIV-positive children and children diagnosed with cancer and the dying child. CONCLUSION: A paucity of literature exploring the experiences, attitudes, and beliefs of nurses with regard to truth-telling to seriously ill children is evident. Little consideration has been given to the role nurses play in communicating medical information to children in a hospital setting. The 17 articles included in the review focused on cancer, and HIV, diagnosis, and end-of-life care. Further research should be undertaken to explore the experiences and attitudes of nurses to clinical information sharing to children hospitalised with a wide range of serious illnesses and in diverse clinical scenarios.

Clinical and Psychosocial Impact of Communication about Oral Potentially Malignant Disorders: A Scoping Review.

Delivering bad news has been widely studied in cancer, thus, this scoping review aims to identify the available evidence concerning the communication of oral potentially malignant disorders (OPMDs) and their clinical and psychosocial impacts. A search was performed using electronic databases (Medline/PubMed, Scopus, Embase, and Web of Science) and one grey literature database (Google Scholar). Studies focused on communicating the diagnosis of OPMDs and the patients' perceptions were included. Study selection and data extraction were performed by two authors in a two-phase process. Five publications were included in the qualitative analysis. Differences regarding the study design, population, OPMDs assessed, and outcomes of professional-patient communication were found in each study. Protocols for OPMD communication have not yet been reported and there is a need to standardize strategies as communication skills may provide better clinical outcomes for patients diagnosed with potentially malignant disorders. Although future studies are needed, a brief list recommending the aspects that must be communicated is proposed.

Mapping the Moral Terrain of Clinical Deception.

Legal precedent, professional-society statements, and even many medical ethicists agree that some situations may call for a clinician to engage in an act of lying or nonlying deception of a patient or patient's family member. Still, the moral terrain of clinical deception is largely uncharted, and when it comes to practical guidance for clinicians, many might think that ethicists offer nothing more than the rule never to deceive. This guidance is insufficient to meet the real-world demands of clinical practice, and this article endeavors to articulate a framework to help clinicians better navigate the ethics of clinical deceit. The framework articulates four morally relevant dimensions of a potential deceptive act that should be examined to better determine the moral justification that might be required: the target of the act, the nature of the information, the nature of the act, and the context of the act.

Disclosure of Spousal Death to Patients with Dementia: Attitude and Actual Behavior of Care Managers.

As the number of dementia patients increases, there is a need to protect patients' right to know. However, in reality, there are cases in Japan where spouses' deaths are concealed from patients. We conducted a questionnaire survey of care managers (CMs) to obtain their attitude and actual behavior regarding the disclosure of a spouse's death to patients with dementia. A self-administered, anonymous questionnaire survey was implemented at academic meetings attended by CMs from March to December 2019, inquiring about experiences with spousal deaths of patients with dementia, disclosure rates, behavioral and psychological symptoms of dementia, and depression. Over 80% had experienced the spousal death of a patient with dementia; the percentage of CMs who had implemented the disclosures varied widely. About 18% had experienced worsening behavioral and psychological symptoms of dementia (BPSD), and 26% had worsening depression as a result of the disclosure. About 83% of respondents were positive about disclosure, but about 44% did so less than 50% of the time. This study is the first to reveal the current state of CMs' policies and behaviors regarding the disclosure of spousal death to patients with dementia in Japan. Family members' wishes and the possibility of BPSD put a relatively large number of caregivers in a dilemma regarding disclosure.

Truth-Telling to Terminal Stage Cancer Patients in India: A Study of the General Denial to Disclosure.

Telling the truth to the terminal-stage cancer patients differs socio-culturally based on the priorities assigned to patients' autonomy and the principles of beneficence and non-maleficence. After conducting in-depth interviews with 108 terminal-stage adult cancer patients, 306 family members, and 25 physicians, in private and public hospitals in both rural and urban areas, in the state of West Bengal, India it has been found that even though 85.60% of the patients prefer full disclosure, only 22.03% are actually informed. Though demographic characteristics, like age, gender, education etc., have marginal influences over the pattern of truth-telling, the main factor behind non-disclosure is the family members' preference for principles of beneficence and non-maleficence over patient autonomy. Hence, only 9.32% of those 118 patients' family members have agreed to full disclosure. Physicians comply with this culture of non-disclosure as family, in India, is the centre of decision-making and acts as the primary unit of care.

Bearing Witness as a Process for Responding to Trauma Survivors: A Review.

Bearing witness is a means for trauma survivors to give voice to lived experience. Bearing witness has been used in national and international commissions, inquiries, and tribunals to hear directly from survivors of abuse and trauma. This scoping review examines the documented research on the experience of survivors of trauma bearing witness. In 2021, six electronic data bases were searched-EBSCO, Informit, CINHAL, Clarivate, ProQuest, and Sage-and a search of the gray literature, revealed 1,201 references for studies between 1990 and 2021. After applying the Arksey and O'Malley framework, 21 studies that met inclusion criteria were identified. The inclusion criteria focused on studies where survivors expressed their views on bearing witness to trauma in official processes inclusive of public or private testimony, verbal or written. These studies utilized a range of methodologies and designs that represented the perspectives of 3,192 survivors of trauma who had borne witness. Analysis of the studies resulted in key findings under four themes: healing versus re-traumatization, support and safety of survivors, engaging and involving survivors, and culture and context. The literature indicates that bearing witness is a critical means to give voice to survivors of trauma and to provide them with acknowledgment; however, the literature is inconclusive regarding the impact of bearing witness on survivors. More research is required to better understand how survivors can best benefit and be supported by processes of bearing witness, and not be harmed or re-traumatized.

Assessment of attitude and practices toward breaking the bad news among physicians in a national tertiary government hospital for infectious diseases from October 2020 to October 2021

Background@#Delivering bad news to patients is one of the most difficult tasks of physicians that play a big role in the process of treatment and cooperation of patients. Patients generally have the right to be informed of their condition, but the debate over the importance of the attitude of telling the truth is still an issue. @*Objective@#This study aimed to understand the attitude and practices toward breaking the bad news among physicians in a National Tertiary Government Hospital for infectious Diseases from October 2020 to October 2021.@*Methods@#This cross-sectional study was conducted at the San Lazaro Hospital from October 2020 to October 2021. A self-administered questionnaire was adapted to elicit information on physicians’ knowledge and practices about breaking bad news to patients and their families. Inclusion criteria included all the practicing physicians assigned in the clinical areas either full time or part time medical specialists, residents and fellows and hospitalist in San Lazaro Hospital. Physicians who were assigned in the non-clinical areas and did not see or handle patients and non-employees of the institution and who refused to sign the informed consent were excluded. Total Purposive Sampling was utilized. Data were gathered using a validated 3-part 34 item personally administered questionnaire and was presented in Descriptive Statistics Frequency distribution for the demographics, ANOVA, Linear regression analysis.@*Results@#A total of 100 participants was included and based on socio-demographic characteristics of respondents toward breaking the bad news. Majority of the respondents were aged 35 – 54 years old with 52 or 52%, female with 69 or 69%, were fellows with 41 or 41%, specialty was Family Medicine with 36 or 36%, and majority of the respondent’s qualification was GP with training with 46 or 46%. The study revealed that sex (t = -2.070, p = 0.042) had significant association to the attitude and practices toward breaking the bad news among practicing physicians at 0.05 level of significance. Thus, male respondents has had higher attitude and practices toward breaking the bad news as compare to female respondents. @*Conclusion@#According to the findings of this study, clinicians at San Lazaro Hospital demonstrated a good attitude and practice regarding breaking the bad news between October 2020 and October 2021. The researcher believed want to help their patients, and most of them have the necessary knowledge and skills for breaking bad news.

Muslim Jurisprudence on Withdrawing Treatment from Incurable Patients: A Directed Content Analysis of the Papers of the Islamic Fiqh Council of the Muslim World League.

This study investigates the views of contemporary Muslim jurists about withdrawing treatment of the terminally ill. Its aim is threefold. Firstly, it analyses jurists' views concerning core themes within the process of withdrawing treatment. Secondly, it provides insight into fatwas about withdrawing treatment. Thirdly, it compares these views with current medical standards in Europe and the Atlantic world on withdrawing treatment. The data consisted of six papers by Muslim jurists presented at the conference of the Islamic Fiqh Council in 2015. We conducted a directed content analysis (DCA) through a predetermined framework and compiled an overview of all previous fatwas referred to in the papers, which are also analysed. The results show that the general consensus is that if health cannot be restored, treatment may be withdrawn at the request of the patient and/or his family or on the initiative of the doctor. The accompanying fatwa emphasizes the importance of life-prolonging treatment if this does not harm the patient. It becomes apparent in the fatwa that the doctor has the monopoly in decision-making, which is inconsistent with current medical standards in Europe. Managing disclosure in view of the importance of maintaining the hope of Muslim patients may challenge the doctor's obligation to share a diagnosis with them.

An Exploratory Study on Information Manipulation by Doctors: Awareness, Actual State, and Ethical Tolerance.

(1) Background: To what extent is information manipulation by doctors acceptable? To answer this question, we conducted an exploratory study aimed at obtaining basic data on descriptive ethics for considering this issue. (2) Methods: A self-administered questionnaire survey was conducted on a large sample (n = 3305) of doctors. The participants were queried on (1) whether they consider that information manipulation is necessary (awareness), (2) whether they have actually manipulated information (actual state), and (3) their ethical tolerance. (3) Result: The response rate was 28.7%. Sixty percent of the doctors responded that information manipulation to avoid harm to patients is necessary (awareness), that they have actually manipulated information (actual state), and that information manipulation is ethically acceptable. (4) Conclusion: While the present survey was conducted among doctors in Japan, previous studies have reported similar findings in the United States and Europe. Based on our analysis, we hypothesize that a relationship of trust between patients and medical personnel is crucial and that information manipulation is not needed when such a relationship has been established.

Children's informed signified and voluntary consent to heart surgery: Professionals' practical perspectives.

BACKGROUND: The law and literature about children's consent generally assume that patients aged under-18 cannot consent until around 12 years, and cannot refuse recommended surgery. Children deemed pre-competent do not have automatic rights to information or to protection from unwanted interventions. However, the observed practitioners tend to inform young children s, respect their consent or refusal, and help them to "want" to have the surgery. Refusal of heart transplantation by 6-year-olds is accepted. RESEARCH QUESTION: What are possible reasons to explain the differences between theories and practices about the ages when children begin to be informed about elective heart surgery, and when their consent or refusal begins to be respected? RESEARCH DESIGN, PARTICIPANTS AND CONTEXT: Research methods included reviews of related healthcare, law and ethics literature; observations and conversations with staff and families in two London hospitals; audio-recorded semi-structured interviews with a purposive sample of 45 healthcare professionals and related experts; interviews and a survey with parents and children aged 6- to 15-years having elective surgery (not reported in this paper); meetings with an interdisciplinary advisory group; thematic analysis of qualitative data and co-authorship of papers with participants. ETHICAL CONSIDERATIONS: Approval was granted by four research ethics committees/authorities. All interviewees gave their informed written consent. FINDINGS: Interviewees explained their views and experiences about children's ages of competence to understand and consent or refuse, analysed by their differing emphases on informed, signified or voluntary consent. DISCUSSION: Differing views about children's competence to understand and consent are associated with emphases on consent as an intellectual, practical and/or emotional process. Conclusion: Greater respect for children's practical signified, emotional voluntary and intellectual informed consent can increase respectful understanding of children's consent. Nurses play a vital part in children's practitioner-patient relationships and physical care and therefore in all three elements of consent.

Creating the Truth with Persons Living with Advanced Dementia.

Truth telling to persons living with dementia is a nuanced problem that demands negotiating between the hazards of principlism and the loving deceiver's demand to lie as needed. To ban deception, as we do restraints, would be misguided and cruel. So too to demand we always tell the truth. We ought to adopt a practice called "creative care." It begins with the premise that person's living with dementia are capable of creativity. Creative care breaks down the mysterious fourth wall we build around persons living with dementia, especially persons with advanced dementia. It invites us to see a person living with dementia as a person who is capable of creating something beautiful. They need our time and words, not our lies and sedatives.

A Tangled Web: Deception in Everyday Dementia Care.

Care workers and families often engage in deception in everyday interactions with people affected by dementia. While benevolent deception can be justified, there are often more respectful and less risky ways to help people with dementia seeking to make sense of their lives.

Caring by lying.

Caring for loved ones with dementia can sometimes necessitate a loose relationship with the truth. Some might view such deception as categorically immoral, and a violation of our general truth-telling obligations. I argue that this view is mistaken. This is because truth-telling obligations may be limited by the particular relationships in which they feature. Specifically, within caregiving relationships, we are often permitted (and sometimes obligated) to deceive the people with whom we share them. Our standing to deceive follows from certain features of caregiving relationships. Specifically, they are relationships that involve obligations to promote a person's interests and values (and not simply their autonomy), that often permit us to assume the hypothetical consent of the person with whom we share them, and in which we are often entitled to act out of self-interest. Once we appreciate these features, we will be able to recognize that the truth-telling norms governing our relationships with loved ones with dementia do not represent a radical departure from our general truth-telling obligations, but are instead consistent with truth-telling norms that feature in other caregiving relationships. In addition, we will be able to understand why we may feel conflicted about lying to loved ones with dementia, even when lying is permissible.

Ethical Challenges in Pediatric Oncology Care and Clinical Trials.

The care of pediatric cancer patients is a vast departure from cancer care of adults. While the available treatment modalities-chemotherapy, radiation, and surgery-are the same, the diseases, care-delivery, and outcomes differ greatly. And just as 'children are not just little adults,' pediatric bioethics occupies a distinct place within the broader field of bioethics. In this chapter, we will begin with an introduction to fundamental principles and frameworks for understanding ethical issues in pediatrics, highlighting the triadic nature of medical decision-making between a physician, the child-patient, and the child's parent as the surrogate decision-maker. We will then delve into further details of how these principles and frameworks shape the care of children with cancer, examining specific ethical challenges commonly encountered by pediatric oncologists. We will traverse this landscape by examining issues involving (a) informed consent; (b) research involving children; (c) end of life; (d) genetic and genomic testing; and (e) professionalism. We also examine ethical challenges in clinical research, in children and more broadly. While not an exhaustive exploration of the myriad ethical issues one might encounter in pediatric cancer medicine and clinical trials, this chapter provides readers with a foundation for further reading.

Cancer and Life Beyond It: Patient Testimony as a Contribution to Subjective Evidence.

Patient narratives are a very valuable literary and medical resource. They transcribe the experience of illness into the life stories of the subject and the author. A serious case of cancer triggers the very individual experience of vulnerability, suffering, dependence, and even contingency in the no longer 'open' future. Even after overcoming cancer, life is never the same again. Writing about one's own experience of cancer is a hermeneutic feat of strength with ethical and aesthetic implications. In the age of personalized and evidence-based medicine, patient narratives offer a particular and necessary supplement to the objectifying medical perspective, since they constitute expressions of subjective evidence. This article is based on the direct experience of cancer by the co-author of the narrative. The long history of her illness is presented chronologically in her own words and has been translated from Italian to English. This is followed by an essay, published here for the first time, on "the life beyond cancer", on the patient's time without tumors and the consequences of therapies and mutilating operations. Our methodological approach is based on Havi Carel's Phenomenology of Illness. The close reading of this pathography focuses on three aspects: (1) the effect and power of words; (2) the passage from wariness to awareness; and (3) the maintenance of personal quality of life during and after cancer.

Neural correlates of spontaneous deception in a non-competitive interpersonal scenario: A functional near-infrared spectroscopy (fNIRS) study.

This study aims to examine neural correlates of spontaneous deception in a non-competitive interpersonal situation, and the difference in neural correlates between spontaneous deception and instructed deception using functional near-infrared spectroscopy (fNIRS). We used a modified poker game in which participants freely decided whether sending a piece of truthful/deceptive information to other participants. In the instructed session, participants sent truthful/deceptive information per the instructions. In this non-competitive interpersonal situation in the orbitofrontal cortex (OFC) and dorsolateral prefrontal cortex (DLPFC), deception produced higher neural activities than truth-telling. In addition, spontaneous deception exhibited higher neural activities than instructed deception in the frontopolar area, DLPFC, and frontal eye fields. Spontaneous truth-telling produced higher neural activities than instructed truth-telling in frontal eye fields and frontopolar area. This study provides evidence about neural correlates of spontaneous deception during non-competitive interpersonal scenarios and the difference between spontaneous deception and instructed deception.