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.

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.

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.

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.

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.

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.

Bayesian markets to elicit private information.

Financial markets reveal what investors think about the future, and prediction markets are used to forecast election results. Could markets also encourage people to reveal private information, such as subjective judgments (e.g., "Are you satisfied with your life?") or unverifiable facts? This paper shows how to design such markets, called Bayesian markets. People trade an asset whose value represents the proportion of affirmative answers to a question. Their trading position then reveals their own answer to the question. The results of this paper are based on a Bayesian setup in which people use their private information (their "type") as a signal. Hence, beliefs about others' types are correlated with one's own type. Bayesian markets transform this correlation into a mechanism that rewards truth telling. These markets avoid two complications of alternative methods: they need no knowledge of prior information and no elicitation of metabeliefs regarding others' signals.

White lie during patient care: a qualitative study of nurses' perspectives.

BACKGROUND: Keeping the patients well and fully informed about diagnosis, prognosis, and treatments is one of the patient's rights in any healthcare system. Although all healthcare providers have the same viewpoint about rendering the truth in treatment process, sometimes the truth is not told to the patients; that is why the healthcare staff tell "white lie" instead. This study aimed to explore the nurses' experience of white lies during patient care. METHODS: This qualitative study was conducted from June to December 2018. Eighteen hospital nurses were recruited with maximum variation from ten state-run educational hospitals affiliated to Tehran University of Medical Sciences. Purposeful sampling was used and data were collected by semi-structured interviews that were continued until data saturation. Data were classified and analyzed by content analysis approach. RESULTS: The data analysis in this study resulted in four main categories and 11 subcategories. The main categories included hope crisis, bad news, cultural diversity, and nurses' limited professional competences. CONCLUSION: Results of the present study showed that, white lie told by nurses during patient care may be due to a wide range of patient, nurse and/or organizational related factors. Communication was the main factor that influenced information rendering. Nurses' communication with patients should be based on mutual respect, trust and adequate cultural knowledge, and also nurses should provide precise information to patients, so that they can make accurate decisions regarding their health care.

[Experience of Truth-Telling From the Viewpoints of Family in the Intensive Care Units].

BACKGROUND: Truth-telling is an important step toward reducing the cognitive gap between physicians and patients as well as reducing the psychological pressures applied to physicians by family members. There is a lack of research on the truth-telling experience and needs in the intensive care unit from the perspective of patient family members. PURPOSE: This study is designed to explore the experiences and needs of families in the intensive care unit. METHODS: A descriptive phenomenology method was used in this study. In-depth interviews were conducted with five participants who had family members assessed with acute physiology and chronic health evaluation II scores ≥ 20. Data were analyzed using Giorgi's phenomenological methods and Nvivo 11. RESULTS: Four experience themes were examined, including (1) nothing is clear, requires explanation; (2) helpless to find answers, need a nurse to resolve this issue; (3) professional conduct makes us feel helpless, longing for love from the medical team; (4) decisions are very difficult, hoping to get more help. CONCLUSIONS / IMPLICATIONS FOR PRACTICE: The family members expressed that they were unable to understand the underlying causes of the progression in patient condition because the medical team only presented outcomes to the family and did not discuss related causes. Thus, it is recommended that medical teams learn to recognize the cognitive processes of patient family members and consider their emotions, including their needs and expectations, in order to provide individualized explanations based on a patient's status and progress.

The experiences of patients and their family members when receiving bad news about cancer: A qualitative meta-synthesis.

OBJECTIVE: This qualitative meta-synthesis explored the subjective experiences of patients and their family members when receiving bad news about cancer, with a focus on what was important to them during this process and making future recommendations. METHODS: A search of five electronic databases yielded 587 different records that resulted in 88 articles assessed against the inclusion/exclusion criteria. With the supplement of four additional records, 29 articles were analysed using thematic synthesis. A quality appraisal checklist was used to provide further information about the included articles. RESULTS: Patients and family members experienced receiving bad news as a process that involved three phases, labelled as follows: "preparation", "delivery", and "adjusting and coping". The "preparation" phase had four themes: the setting, developing a relationship, knowing the patient, and forewarning. Four themes were identified during the "delivery" phase: emotional reactions, empathy not sympathy, active participation, and understanding. "Adjusting and coping" comprised four themes: hope, holistic support, being a protector, and ongoing relationships. CONCLUSIONS: Receiving bad news is a significant experience for patients and family members. They want bad news delivered in an appropriate setting, in a manner consistent with their personal preferences, and have their psychological needs attended to within the context of an established relationship. Healthcare professionals can be assisted to deliver bad news in the best way possible by additional training and their workplace institutions providing quiet, private rooms, and sufficient time. Future research is needed to better understand family members' experiences and needs.

Preference of cancer patients and family members regarding delivery of bad news and differences in clinical practice among medical staff.

OBJECTIVES: To study the preferences of cancer patients and their families in way of being informed of their condition and, by comparing their preferences with the medical staff's clinical practices, explore the factors underlying the latter's preferences. METHODS: A survey was conducted with 216 cancer patients, 242 families, and 176 clinical staff members with the Medical Status Communication questionnaire (Simplified Chinese edition). RESULTS: The clinical staff scored lower than the cancer patients and their families in terms of the total score, way of communication, emotional support, and additional information (F = 16.134, p < .001; F = 28.604, p < .001; F = 13.839, p < .001; F = 16.745, p < .001). Factors underlying the medical staff's clinical practices included, as revealed by the multiple linear regression analysis, gender (p = .03), and willingness to improve the way of communication about cancer (p = .006). CONCLUSIONS: A gap existed between the medical staff's clinical practice and the preferences of the cancer patients and their families. The medical staff should receive adequate training in cancer communication skills and techniques for improvement in this respect. When designing training for skills in delivering bad news to cancer patients, the well-being of cancer patients and their families must be thoroughly considered, and patient demands for information should be satisfied in the context of the information explosion of the current age.

Everything I Really Needed to Know to Be a Clinical Ethicist, I Learned From Elisabeth Kübler-Ross.

I analyze the insights present in Elisabeth Kübler-Ross's seminal work, On Death and Dying that have laid the foundation for contemporary clinical bioethics as it is practiced by clinical ethics consultants. I highlight the landmark insight of Elisabeth Kübler-Ross that listening to dying patients reveals their needs and enables them to enjoy a better death. But more important for contemporary clinical ethics is that the text highlights three tensions that the clinical ethicist must navigate but can never truly resolve. Clinical ethicists must balance: (1) the need to hear the patient's voice with the temptation to overly medicalize the case, (2) helping the patient achieve a better death with enabling the patient to die in the way he or she chooses, and (3) keeping professional distance with engaging the patient in a way that respects the intimacy of the patient's disclosures.

Informed consent and nudging.

In order to avoid patient abuse, under normal situations before performing a medical intervention on a patient, a physician must obtain informed consent from that patient, where to give genuine informed consent a patient must be competent, understand her condition, her options and their expected risks and benefits, and must expressly consent to one of those options. However, many patients refrain from the option that their physician believes to be best, and many physicians worry that their patients make irrational healthcare decisions, hindering their ability to provide efficient healthcare for their patients. Some philosophers have proposed a solution to this problem: they advocate that physicians nudge their patients to steer them towards their physician's preferred option. A nudge is any influence designed to predictably alter a person's behavior without limiting their options or giving them reasons to act. Proponents of nudging contend that nudges are consistent with obtaining informed consent. Here I argue that nudging is incompatible with genuine informed consent, as it violates a physician's obligation to tell their patients the truth, the whole truth, and nothing but the truth during adequate disclosure.

Truth-telling and doctor-assisted death as perceived by Israeli physicians.

BACKGROUND: Medicine has undergone substantial changes in the way medical dilemmas are being dealt with. Here we explore the attitude of Israeli physicians to two debatable dilemmas: disclosing the full truth to patients about a poor medical prognosis, and assisting terminally ill patients in ending their lives. METHODS: Attitudes towards medico-ethical dilemmas were examined through a nationwide online survey conducted among members of the Israeli Medical Association, yielding 2926 responses. RESULTS: Close to 60% of the respondents supported doctor-assisted death, while one third rejected it. Half of the respondents opposed disclosure of the full truth about a poor medical prognosis, and the others supported it. Support for truth-telling was higher among younger physicians, and support for doctor-assisted death was higher among females and among physicians practicing in hospitals. One quarter of respondents supported both truth-telling and assisted death, thereby exhibiting respect for patients' autonomy. This approach characterizes younger doctors and is less frequent among general practitioners. Another quarter of the respondents rejected truth-telling, yet supported assisted death, thereby manifesting compassionate pragmatism. This was associated with medical education, being more frequent among doctors educated in Israel, than those educated abroad. All this suggests that both personal attributes and professional experience affect attitudes of physicians to ethical questions. CONCLUSIONS: Examination of attitudes to two debatable medical dilemmas allowed portrayal of the multi-faceted medico-ethical scene in Israel. Moreover, this study, demonstrates that one can probe the ethical atmosphere of a given medical community, at various time points by using a few carefully selected questions.

Models for truth-telling in physician-patient encounters: What can we learn from Yoruba concept of Ooto?

Empirical studies have now established that many patients make clinical decisions based on models other than Anglo American model of truth-telling and patient autonomy. Some scholars also add that current medical ethics frameworks and recent proposals for enhancing communication in health professional-patient relationship have not adequately accommodated these models. In certain clinical contexts where health professional and patients are motivated by significant cultural and religious values, these current frameworks cannot prevent communication breakdown, which can, in turn, jeopardize patient care, cause undue distress to a patient in certain clinical contexts or negatively impact his/her relationship with the community. These empirical studies have now recommended that additional frameworks developed around other models of truth-telling; and which take very seriously significant value-differences which sometimes exist between health professional and patients, as well as patient's cultural/religious values or relational capacities, must be developed. This paper contributes towards the development of one. Specifically, this study proposes a framework for truth-telling developed around African model of truth-telling by drawing insights from the communitarian concept of ootó amongst the Yoruba people of south west Nigeria. I am optimistic that if this model is incorporated into current medical ethics codes and curricula, it will significantly enhance health professional-patient communication.

Truth-telling, decision-making, and ethics among cancer patients in nursing practice in China.

BACKGROUND: Truth-telling toward terminally ill patients is a challenging ethical issue in healthcare practice. However, there are no existing ethical guidelines or frameworks provided for Chinese nurses in relation to decision-making on truth-telling of terminal illness and the role of nurses thus is not explicit when encountering this issue. OBJECTIVES: The intention of this paper is to provide ethical guidelines or strategies with regards to decision-making on truth-telling of terminal illness for Chinese nurses. METHODS: This paper initially present a case scenario and then critically discuss the ethical issue in association with ethical principles and philosophical theories. Instead of focusing on attitudes toward truth disclosure, it aims to provide strategies regarding this issue for nurses. It highlights and discusses some of the relevant ethical assumptions around the perceived role of nurses in healthcare settings by focusing on nursing ethical virtues, nursing codes of ethics, and philosophical perspectives. And Confucian culture is discussed to explicate that deontology does not consider family-oriented care in China. CONCLUSION: Treating each family individually to explore the family's beliefs and values on this issue is essential in healthcare practice and nurses should tailor their own approach to individual needs regarding truth-telling in different situations. Moreover, the Chinese Code of Ethics should be modified to be more specific and applicable. Finally, a narrative ethics approach should be applied and teamwork between nurses, physicians and families should be established to support cancer patients and to ensure their autonomy and hope. ETHICAL CONSIDERATIONS: This paper was approved by the Ethics Committee of The Second Affiliated Hospital of Guangzhou Medical University. The authors have obtained consent to use the case study and it has been anonymised to preserve the patient's confidentiality.

Comparison of Thai older patients' wishes and nurses' perceptions regarding end-of-life care.

BACKGROUND: Achieving a "good death" is a major goal of palliative care. Nurses play a key role in the end-of-life care of older patients. Understanding the perceptions of both older patients and nurses in this area could help improve care during this period. OBJECTIVES: To examine and compare the preferences and perceptions of older patients and nurses with regard to what they feel constitutes a "good death." RESEARCH DESIGN: A cross-sectional study. PARTICIPANTS AND RESEARCH CONTEXT: This study employed a self-report questionnaire that asked about various options for end-of-life care. It was distributed to older patients who attended the outpatient clinic of internal medicine and nurses who worked at two medical schools in Thailand from September 2017 to February 2018. Patients were asked to respond to the questions as if they were terminally ill, and nurses were asked to imagine how older patients would answer the questions. ETHICAL CONSIDERATION: Approval from Institutional Review Board was obtained. FINDINGS: A total of 608 patients and 665 nurses responded to the survey. Nurses agreed with concepts of palliative care, but they rated themselves as having poor knowledge. The patient respondents felt that it was most important that they receive the full truth about their illnesses (29.2%). The nurses thought the most important issue was relief of uncomfortable symptoms (25.2%). On seven out of the 13 questions, nurses overestimated the importance of the relevant issue to patients and underestimated the importance on one question (p < 0.05). DISCUSSION: Both nurses and older patients signified concepts of palliative care, but nurses felt that they lacked adequate knowledge. Nurses estimated that patients would have positive attitudes toward autonomy and the closure of life affairs to a significantly greater degree than the patient respondents. CONCLUSIONS: We recommend that palliative care education be improved and that steps be taken to allow for more effective nurse-patient communication with regard to the patients' end-of-life wishes.