Scientific misconduct: a form of white coat crime.
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Biomedical Research↗
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Diagnostic disclosure: a tale in two cultures.
Diagnostic communication between doctors and patients is thought to differ radically between Japan and Western countries. To understand diagnostic disclosure to psychiatric patients, a questionnaire with six case vignettes was sent to practising psychiatrists in Japan (N = 166) and North America (N = 112). While over 90% of both groups would inform patients with affective and anxiety disorders of their diagnoses, only 70% of North Americans and less than 30% of Japanese would similarly inform patients with schizophrenia or schizophreniform disorders. The Japanese preferred alternative was to give a vague alternative diagnosis such as neurasthenia. North Americans would discuss differential diagnoses with the patient instead. Nearly all in both groups would inform the family, but North Americans would do so only with patient consent. For disorders for which there are effective treatments, diagnostic disclosure is common to both cultures; when prognosis is uncertain or the diagnosis is feared, as in schizophrenia, culturally constructed views of patienthood govern disclosure practice.
Adult↗
Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis.
OBJECTIVE: To determine the attitudes of patients with mild dementia and their carers towards the disclosure of diagnoses of cancer and dementia and whether there are differences between these groups. To determine whether any major adverse events occurred following disclosure of diagnosis of dementia. DESIGN: A prospective study followed by a retrospective case-note study after 1 year. PARTICIPANTS AND SETTING: Fifty patients with mild dementia and their carers were recruited from a memory clinic in Nottingham, UK, and an old-age psychiatrist, using a semistructured questionnaire, separately interviewed them. MEASURES: Questions related to whether patients and their carers wished to be told diagnoses of cancer and dementia; the reasons for this; whether they would want treatment and make use of predictive testing if available were included. At 1-year follow-up whether antidepressants had been prescribed and whether any catastrophic reaction had occurred following disclosure of diagnosis. RESULTS: An overwhelming majority of patients with mild dementia wished to be informed of their diagnosis (92%); even more (98%) of the same patient sample reported wanting disclosure of a hypothetical diagnosis of cancer. A higher proportion (98%) of carers would wish to be told if they were to develop either dementia or cancer. All patients and carers would like access to treatment for dementia. A total of 88% of patients and 86% of carers would make use of a predictive test of Alzheimer's disease. Before receiving a diagnosis of mild dementia, only 28% of patients had insight that they may have dementia. Only a quarter (26%) of carers did not want the doctor to disclose the diagnosis of dementia to the patient. After 1 year, 6% of the original sample had developed a depressive illness requiring antidepressant treatment and no major incidents had occurred following disclosure of diagnosis. CONCLUSIONS: There has been a growing debate on whether patients with dementia should be informed of their diagnosis. Until recently, little was known about the views of patients themselves. This study shows that the vast majority of patients with mild dementia wish to be fully informed. Despite increasing awareness, a quarter of carers still do not wish their relative to be informed, though wish to be informed if they themselves were to develop the illness. This is significantly lower, however, than previously reported, suggesting a shift in attitudes. This study adds support to the weight of evidence that disclosure of a diagnosis of dementia does not cause depression or any irreversible harm to the patient.
Adaptation, Psychological↗
Disclosure of prognosis to terminally ill patients: attitudes and practices among French physicians.
BACKGROUND: Disclosure of the prognosis to terminally ill patients is a strong prerequisite for integrating the physical, psychological, spiritual, and social aspects of end-of-life care. OBJECTIVE: This study aimed to assess French physicians' general attitudes and effective practices (with patients followed up to death recently) toward such disclosure. DESIGN/SUBJECTS: We used data from a cross-sectional survey conducted among a national sample of 917 French general practitioners, oncologists, and neurologists. RESULTS: A majority of respondents opted for prognosis disclosure only at patients' request, very few opted for systematic disclosure without patient's request, and a significant minority opted for systematic concealment. Concerning deceased patients described by respondents, 44.5% of competent patients were informed of prognosis by their physician, 27.3% were informed by someone else, 9.0% refused to be informed, and 19.2% were simply not informed. Concealment was more frequent for older patients, and physicians involved in a nongovernmental organization (NGO) for patients' support were more likely to disclose the prognosis, even without patient's request. CONCLUSIONS: Disclosure of the prognosis to terminally ill patients is still far from systematic in France. Further research is needed to better understand the motivations of French physicians' disclosure practices, which are probably culturally shaped.
Adult↗
Relatives' attitudes towards informing patients about the diagnosis of Alzheimer's disease.
OBJECTIVES: To evaluate relatives' attitudes towards informing patients with Alzheimer's disease (AD) about their diagnosis. SETTING: A university hospital in Italy. METHODS: The closest relatives of each of 71 subjects diagnosed for the first time as having AD were interviewed, using a semistructured questionnaire. Spontaneous requests by relatives not to communicate issues concerning the diagnosis were also recorded. RESULTS: Forty three (60.6%) relatives spontaneously requested that patients not be fully informed. After being interviewed, nobody thought that the patient should be given all the information. Justifications were related to the fear of the onset or worsening of depressive symptoms in the patient. CONCLUSIONS: In Italy relatives' opposition to informing AD patients appears to be common. Knowledge of the relatives' attitudes may be useful for clinicians but disclosure of diagnosis should be based on the clinical evaluation of the patient and on a prudent evaluation of the relationship between the patient and her/his relative caregiver.
Adult↗
To tell or not to tell--what parents think about telling their children that they were born following donor insemination.
Pioneering legislation regarding donor insemination was introduced in Sweden in 1985. The law gives the child, upon reaching sufficient maturity, the right to obtain information about the donor and his identity. One hundred and forty-eight Swedish couples with children conceived through donor insemination after the law was introduced have answered questions about disclosure and donation in a questionnaire. This article addresses the reasoning employed by individual couples in their decision whether or not to inform the children about their origin. Parental reflections on their decision and the children's reactions to receiving this information are also presented. Five categories of parental arguments are reported. These included 'reasons to tell', 'reasons not to tell', 'reasons why the question about telling or not would not be answered at all', 'inconclusive types of reasoning, that can still influence the fundamental decision' and 'context-dependent reasons associated with actual circumstances'. Through this meta-classification of arguments it was possible to identify clues to how professionals could facilitate parental decision-making and promote disclosure. Parents who had informed their children did not regret their decision. All of the parents who responded to the question of whether it had been beneficial to the child to tell answered 'yes'.
Age Factors↗
Medical harm and the consequences of error for doctors.
Mistakes in medicine, particularly when patients have suffered harm as a result, are of ethical concern as breaching a fundamental injunction in medicine: "first do not harm". To minimise the chances of a recurrence, an effective response to harm must take into account both the concerns of patients who have been harmed and the concerns of doctors who may fear extreme outcomes if a mistake is admitted. There is an apparent conflict between a need to respond to errors non-punitively, on the one hand, and ethical and legal requirements for accountability and compensation for anyone harmed, on the other. There is also confusion between arguments for a "blame-free" culture in the healthcare system and the need to attribute responsibility in some cases. Important elements in an ethical response to mistakes include disclosure to the patient and family; taking appropriate clinical steps to mitigate any harm that may result from a mistake; identifying the process leading to harm; and responding in an appropriate and humane manner to minimise the likelihood of any recurrence.
Diagnostic Errors↗
Nursing and medical student attitudes towards nursing disclosure of information to patients: a pilot study.
The American Hospital Association 'Patient's Bill of Rights' encourages greater disclosure of medical information to patients. However, the 'Bill of Rights' and conventional hospital practice centre responsibility for disclosure on physicians. The standing of nurses with regard to disclosure of information remains unclear. Many features of the nursing role indicate nurses could participate more fully in disclosure. A questionnaire exploring issues of disclosure by nurses was circulated to senior nursing students and fourth-year medical students. The 28 nursing respondents and 28 medical respondents differed significantly on 20 of the 87 items. In 15 of these, nursing students clearly showed more support than medical students for an active nursing role in disclosure, informed consent, expressing professional opinions, and patients' decision-making. A more active role by nurses in disclosing information may support increased patient participation in decision-making.
Adult↗
The rights of patients in Europe.
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Civil Rights↗
The question not asked: the challenge of pleiotropic genetic tests.
Nearly all of the literature on the ethical, legal, or social issues surrounding genetic tests has proceeded on the assumption that any particular test for a gene mutation yields information about only one disease condition. Even though the phenomenon of pleiotropy, where a single gene has multiple, apparently unrelated phenotypic effects, is widely recognized in genetics, it has not had much significance for genetic testing until recently. In this article, I examine a moral dilemma created by one sort of pleiotropic testing, APOE genotyping, which can yield information about the risk of two different conditions -- coronary heart disease and Alzheimer's disease. A physician administering APOE testing for the beneficial purpose of assessing the risk of heart disease may discover medically useless and socially harmful information about the patient's risk of Alzheimer's disease. I explore how much providers should disclose to patients about pleiotropic test results and whether patients are obligated to know as much about their genetic condition as possible.
Dementia↗
Parents' responses to their child's diagnosis of neurofibromatosis 1.
Eighteen unaffected families with an affected child were interviewed in their homes to chronicle the experiences of parents in receiving their child's diagnosis of neurofibromatosis (NF) 1. Families were recruited through NF support groups and the Genetics Departments of two metropolitan hospitals in Northern California. Characteristics of disclosures were often at variance with suggestions made in recent years for the giving of "bad news." Disclosures typically were made "helter-skelter" during regular examinations. Parents in 16 of the families described shock, upset, and subsequent depression as their responses to the diagnosis. The overriding issues, which dominated in the disclosure, were the uncertainty of the condition, the possibility of many diverse symptoms, and its historic misdiagnosis as "The Elephant Man's Disease." However, physicians' attention to the setting and style of disclosure, imparting appropriate and positive information, allowance of additional time for careful explanation, and rescheduling a follow-up appointment, may be able to more effectively assist parents in receiving and more positively adapting to their child's diagnosis.
Adaptation, Psychological↗
Patient preference regarding first-trimester aneuploidy risk assessment.
OBJECTIVE: We assessed patient views regarding disclosure of first-trimester Down syndrome risk assessment results compared with withholding results until a single, more accurate second-trimester screening result is available. STUDY DESIGN: A prospective, institutional review board-approved, voluntary, anonymous survey was presented to patients with singleton pregnancies who were undergoing first-trimester nuchal translucency and biochemical screening at our institution. Options included immediate (sequential testing) or later disclosure (integrated testing). Descriptions and a comparison of the options were included in the survey. RESULTS: One hundred one women completed the questionnaires; 69.3% of the patients preferred sequential testing, compared with 30.7% of the patients who were either unsure or preferred integrated testing. Older patients and those patients with better background knowledge of screening tests preferred earlier disclosure of screening results (P = .035 and P = .026, respectively). Patients who preferred earlier disclosure also preferred termination of a Down syndrome pregnancy (P = .013). CONCLUSION: Older patients and those patients with a better understanding of screening tests preferred immediate disclosure of first-trimester risk assessment results; these women were more likely to prefer to terminate an affected pregnancy.
Adult↗
Mexican geneticists' opinions on disclosure issues.
Here we discuss the opinion on disclosure issues (respect for confidentiality) of Mexican professionals working in clinical genetics. The information was obtained from a comprehensive survey on genetics, ethics and society organized by Wertz and Fletcher in 1993, in which geneticists from 37 nations participated. The responses to 18 questions from 64 of 89 (72%) geneticists invited to participate were analyzed for this paper. The questions were directed to investigate: a) disclosure of clinically relevant information in several situations such as testicular feminization syndrome, mosaic de novo balanced translocation in a fetus, or accidental discovery of non-paternity; b) the protection of patient's privacy from the spouse or blood relatives; and c) confidentiality in cases with high genetic risk to relatives. The results reveal significant disparity between general responses related to disclosure of all clinically relevant information and specific responses in particular cases. In addition, professionals appear to give higher priority to protecting the spouse, blood relatives or public safety, rather than the patient's confidentiality.
Attitude of Health Personnel↗
Information needs of Asian and White British cancer patients and their families in Leicestershire: a cross-sectional survey.
The aim of this questionnaire survey was to find the information needs of British Asian cancer patients. An additional objective was to find the extent of family involvement when the patient was given the cancer diagnosis and the patients' views about information disclosure. We interviewed 82 Asian patients and 220 random white control patients. More white British patients gave positive answers to the statement 'I want as much information as possible' than Asian patients (93.1 vs 77.5%, P<or=0.001). However, 92.6% of Asian patients wanted to know if they had cancer. Many more Asians (66.2 vs 5.1%, P<0.001) indicated the general practitioner (GP) as the preferred source of information. This may be because 56% of English-speaking Asian patients would prefer to discuss their illness in their mother tongue. In Leicester, many Asian patients have Asian GPs. The vast majority of both Asian and British patients agreed that family or friends should be present when patients are given the cancer diagnosis. However, Asians were more likely to be alone (24 vs 15%, P=0.008) when told they have had cancer. The majority of patients (both white British and Asian) want to control the disclosure of information to relatives and friends and would like to be present at doctor/family meetings.
Adolescent↗
Dementia diagnosis and disclosure: a dilemma in practice.
BACKGROUND: Providing the individual with the correct information about their diagnosis can help maximize the patient's autonomy, however empirical evidence identifies inconsistencies in the practice of diagnosis disclosure in dementia. Within health care, ethical problems arise frequently and these present a challenge for health care professionals. This challenge can also give rise to conflict when professionals are torn between respecting autonomy, doing good and avoiding paternalism. AIM: The aim of this paper is to highlight the need for interprofessional collaboration when faced with ethical dilemmas such as diagnosis disclosure in the care of adults with dementia. The use of a dialogue and supplementary notes are used to explore crucial ethical points raised by health care professionals. RELEVANCE TO CLINICAL PRACTICE: The increasing rate of dementia and the need for patients to have access to timely and appropriate information about their diagnosis has prompted much debate about disclosing the diagnosis with the individual who has dementia. This paper may also be useful for educational purposes when used as a framework for discussion/debate in student nurse education. CONCLUSION: Ethical theories are of benefit in assisting the members of the multidisciplinary team to reach a morally defensible decision. Making ethical decisions in practice can cause the nurse concern. While there is no complete set of 'rules' that can provide an answer to each ethical dilemma, it is of immense value to nurses working within the multidisciplinary team to possess a sound knowledge of ethical positions in order to analyse the many complex situations that nurses encounter. The pivotal role of the health care professional is to work in collaboration and engage in sharing the diagnosis with the patient. It is hoped that this paper will stimulate and encourage further debate and study regarding the individual with dementia and diagnosis disclosure. Recommendations for practice, education, policy and research will also be highlighted.
Aged↗
Determinants of parental satisfaction with disclosure of disability.
Parental satisfaction with the process of disclosure of disability was investigated in interviews with 103 parents of children with severe physical disability. Only 37 per cent of parents were satisfied with disclosure. Parents were more likely to be satisfied if they felt that the professional carrying out the disclosure had a sympathetic, understanding and approachable manner, and was direct and communicated well; if they had been given sufficient information and opportunities to ask questions; and if they were from a manual social-class background. Factors in the procedure of the disclosure, such as the timing, were not significantly related to satisfaction. These results demonstrate the importance of the parent-professional interaction and point towards an increased emphasis on communication skills in medical training.
Adolescent↗
Hope, disclosure, and control in the neonatal intensive care unit.
The parents of critically ill newborns who have been admitted to a neonatal intensive care unit (NICU) generally face several challenges. Included in these challenges is the possibility of having access to information and a certain level of disclosure about the diagnosis, treatment options, and prognosis for their newborn. A related challenge is the ability to have some control over the care of their newborn. In this article, I (first author) share my own experiences of having a child admitted to an NICU, and I discuss how a lack of disclosure affected the decision making and involvement I had in my child's care and hindered my ability to find hope. A loss of hope can both contribute to a sense of powerlessness and exacerbate the negative aspects of these NICU experiences. I argue that when health care providers offer parents the disclosure they want and need, as well as a certain amount of control over the care of their child while in the NICU, the ability of parents to find hope will be increased, and they will be better able to cope successfully in the NICU environment.
Health Personnel↗
Promisekeeping: an institutional ethos for healthcare today.
The relationship between a physician and a patient, which survived unchanged for decades--indeed centuries--has in recent years undergone a serious change due to the advent of managed care. Controlling costs and maximizing profits are now as equally important as medical concerns, and ethical, economic, and political issues have forever changed the way physicians perform their duties. This article proposes the concept of promisekeeping as a remedy to the sometimes contradictory positions in which patients and providers find themselves. Composed of honesty, explicit disclosure, flexible decision making, and, most of all, beneficence, promisekeeping is one method to ensure that all parties in the managed care system can succeed.
Cost Control↗