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PubMed2006

Patient assessments of a hypothetical medical error: effects of health outcome, disclosure, and staff responsiveness.

OBJECTIVE: To assess whether patients' perceptions of a hypothetical medical error are influenced by staff responsiveness, disclosure of error, and health consequences of the error. DESIGN: Hypothetical scenario describing a medication error submitted by mail. Three factors were manipulated at random: rapid v slow staff responsiveness to error; disclosure v non-disclosure of the error; and occurrence of serious v minor health consequences. PARTICIPANTS: Patients discharged from hospital. MEASURES: Assessment of care described in the scenario as bad or very bad, rating of care as unsafe, and intent to not recommend the hospital. RESULTS: Of 1274 participants who evaluated the scenario, 71.4% rated health care as bad or very bad, 60.2% rated healthcare conditions as unsafe, and 25.5% stated that they would not recommend the hospital. Rating health care as bad or very bad was associated with slow reaction to error (odds ratio (OR) 2.8, 95% CI 2.1 to 3.6), non-disclosure of error (OR 2.0, 95% CI 1.5 to 2.6), and serious health consequences (OR 3.4, 95% CI 2.6 to 4.5). Similar associations were observed for rating healthcare conditions as unsafe and the intent to not recommend the hospital. Younger patients were more sensitive to non-disclosure than older patients. CONCLUSIONS: Former patients view medical errors less favorably when hospital staff react slowly, when the error is not disclosed to the patient, and when the patient suffers serious health consequences.

Adolescent↗
PubMed2005

When is public disclosure of HIV seropositivity acceptable?

HIV/AIDS is a major public health problem in Africa. Stigmatization, discrimination and lack of appropriate health care are among the commonest challenges that HIV infected persons and their families face. It has been suggested that among the tools available in the fight against stigmatization and discrimination is public disclosure of a person's HIV seropositive status. While public disclosure of HIV status has a place in the fight against HIV and AIDS, especially by resulting in behavioural change among people who know of an HIV infected person, we argue that such disclosure also has potential attendant harms. The posthumous disclosure of HIV status is particularly problematic. Public disclosure should be accompanied by appropriate individual counselling and preparation of the community to deal with the situation, and should have regard for cultural sensitivity after consideration of the risks and benefits to individuals, families and the community. Health practitioners should keep in mind that their main duty is to the best interest of the patient, the family and the community, in that order.

Africa↗
PubMed1999

Assessing the expert: a call for reciprocal disclosure in Canada.

The requirement that the state disclose to an accused person all evidence in its possession which is not clearly irrelevant is a tenet fundamental to contemporary criminal law in Canada. In essence, the right to full answer and defence implies that the individual be allowed to completely understand the case which has been brought against him or her. This paper examines the concept of reciprocal disclosure, whereby the defence is obligated to provide evidence to the state. The confines of the ensuing discussion are limited to expert evidence and, more particularly, to psychiatric and psychological testimony. By arguing that early production of an expert's opinion advances rather than retards the interests of justice, the author attempts to debunk some of the myths which are used in Canadian legal circles to justify the suppression of opinion evidence by the defence until the last possible moment.

Canada↗
PubMed1997

Bioethics for clinicians: 8. Confidentiality.

Physicians are obliged to keep information about their patients secret. The understanding that the physician will not disclose private information about the patient provides a foundation for trust in the therapeutic relationship. Respect for confidentiality is firmly established in codes of ethics and in law. It is sometimes necessary, however, for physicians to breach confidentiality. Physicians should familiarize themselves with legislation in their own province governing the disclosure of certain kinds of information without the patient's authorization. Even when no specific legislation applies, the duty to warn sometimes overrides the duty to respect confidentiality. The physician should disclose only that information necessary to prevent harm, and should reveal this information only to those who need to know it in order to avert harm. Whenever possible any breach of confidentiality should be discussed with the patient beforehand.

Adult↗
PubMed2001

Predictors of PTSD symptom severity and social reactions in sexual assault victims.

Demographics, assault variables, and postassault responses were analyzed as correlates of PTSD symptom severity in a sample of 323 sexual assault victims. Regression analyses indicated that less education, greater perceived life threat, and receipt of more negative social reactions upon disclosing assault were each related to greater PTSD symptom severity. Ethnic minority victims reported more negative social reactions from others. Victims of more severe sexual victimization reported fewer positive, but more negative reactions from others. Greater extent of disclosure of the assault was related to more positive and fewer negative social reactions. Telling more persons about the assault was related to more negative and positive reactions. Implications of these results for developing contextual theoretical models of rape-related PTSD are discussed.

Adaptation, Psychological↗
PubMed1994

Disclosure of diagnosis to children with human immunodeficiency virus or acquired immunodeficiency syndrome.

This paper reviews research and clinical literature relevant to the question of disclosure of diagnosis to children with human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS). The model of pediatric oncology, in which much research already exists, is evaluated for its applicability to HIV and AIDS. Although children seem to benefit from early disclosure of diagnosis of life-threatening illnesses, special cultural and social conditions complicate the question with regard to HIV and AIDS. These conditions include the parent-to-child transmission of HIV and the unique social stigma of having HIV because of its association with homosexuality, drug use, and sexual conduct. The paper presents existing treatment approaches and suggests avenues for further research.

Acquired Immunodeficiency Syndrome↗
PubMed1997

Ethical issues in pediatric life-threatening illness: dilemmas of consent, assent, and communication.

The treatment of life-threatening illnesses in childhood is replete with ethical issues and with clinical issues that have ethical implications. The central issues are those involved with a child's participation in the decision-making process and with communication of information about the illness and treatments to children. This article examines the questions of patient autonomy and of parental responsibility and prerogative in the context of pediatric oncology. Included in this examination of the ethical dimensions of pediatric life-threatening illness is a discussion of the many related aspects involved, including medical, cultural, psychosocial, legal, and developmental. A multidimensional approach that considers the ways in which these multiple aspects interact with one another, and which focuses on establishing a strong working alliance between the health care team and the pediatric patient's family, can help to avoid or resolve potential ethical and clinical conflicts.

Adolescent↗
PubMed2006

Ethical issues in medical malpractice.

The interrelationships between biomedical ethics and the law are perhaps nowhere as starkly apparent as in the realm of medical malpractice. Although ethical and legal conduct and practices are often in harmony, in many areas ethical principles and the issues surrounding medical liability appear to come into conflict. Disclosure of errors; quality improvement activities; the practice of defensive medicine; dealing with patients who wish to leave against medical advice; provision of futile care at the insistence of patients or families; and the various protections of Good Samaritan laws are just a few of these. In addition, the ethical principles governing the conduct of physicians serving as expert witnesses in medical malpractice cases have become a subject of intense interest in recent years.

Advance Directives↗
PubMed1997

Disclosing the cancer diagnosis: the patients' experiences.

497 Norwegian cancer patients (346 females, 151 males, mean age = 56 years (S.D. = 12)), admitted to a cancer rehabilitation centre, were surveyed on how they were told their diagnosis. Predictors of general satisfaction with the information were assessed. 43% of the subjects were informed by phone, letter or in the corridor/on the round and estimated that the information was presented in less than 5 minutes. Satisfaction with the information was predicted by perceiving the physicians as personally interested (B = 0.528, P < 0.001), comprehending the information (B = 0.245, P < 0.001), being informed in the physicians' offices (B = 0.338, P < 0.001), being informed by physicians at oncological departments (B = 0.278, P = 0.01) and increasing time spent on the disclosure (B = 0.140, P = 0.01). Other aspects of physician-patient communication than the pure presentation of valid information is highly valued by the patients. However, a substantial proportion of physicians present the cancer diagnosis in such a manner that the possibility of engaging in conversation about the diagnosis and the effect upon the patient is very limited. The findings call for remedial attention to the subject and improvement in performance.

Adaptation, Psychological↗
PubMed2000

The verification of hazardous ingredients disclosures in selected material safety data sheets.

Under the provisions of the Workplace Hazardous Materials Information System, workers in Canada must be provided with accurate and comprehensive Material Safety Data Sheets (MSDSs) describing controlled products used in the workplace. As part of an ongoing auditing project, the MSDSs of some controlled products in use under federal jurisdiction were assessed for accuracy and completeness of their ingredient disclosures. Chemical analyses of samples using gas chromatography-mass spectrometry, infrared spectrophotometry, X-ray fluorescence, and wet methods, were performed to verify the ingredient disclosures in accompanying MSDSs. In this article, analytical processes and results are presented for three cases in which MSDS ingredient disclosures were incomplete. The products included a synthetic lubricant used in a mining operation, a detergent concentrate used for aircraft cleaning, and an epoxy reducer used in aircraft maintenance. In each case, undisclosed hazardous ingredients were detected at concentrations which required their disclosure. In at least one of these cases, the information provided in other sections of the MSDS failed to adequately describe the hazards and required protective measures for the composition discovered. Because the results suggest circumstances in which the inaccurate MSDS could act as a mechanism for workplace injury, compliance measures including employer, inspector, and user education, improved MSDS writer qualifications, and the incorporation of chemical analysis in active auditing programs are recommended.

Canada↗
PubMedDate not supplied

Nondisclosure of human immunodeficiency virus and hepatitis C virus coinfection in a patient with hemophilia: medical and ethical considerations.

This article discusses a medical and ethical dilemma: whether to disclose a positive HIV (human immunodeficiency virus)/HCV (hepatitis C virus) coinfection to an adolescent boy without symptoms with hemophilia despite the objections of his parents. An actual case history is presented and the dilemma faced by the medical team is discussed. Numerous family conferences, all excluding the patient, held during the last 5 years discussed the medical team's obligation for full disclosure, the emerging autonomy of the patient, and the potential for medical disaster (e.g., HIV transmission) if full disclosure were not permitted. Despite this, the family did not agree to allow disclosure. The patient and parents assured us of his sexual inactivity. Legal opinion was sought from the university counsel. The dilemmas are multiple. Is there a convincing argument to insist on disclosure of these facts to this patient, particularly when there is ambiguity regarding the appropriateness of HIV and HCV treatment? Does the ethical argument that he is at potential risk for transmitting HIV/HCV outweigh the rights of the family? What are the rights of the rest of the family? What are the rights of the minor? Is it our ethical responsibility to disclose a probably fatal diagnosis?

Adolescent↗
PubMed1994

End-of-life family decision-making from disclosure of HIV through bereavement.

End-of-life decision-making is conceptualized as the foreground against the background of a family, transitional model of illness with the human immunodeficiency virus (HIV). Both foreground and background represent new knowledge and theory development emerging from six research studies over a 7-year period. The research was phenomenological, longitudinal, ethnographic, descriptive survey, narrative, and grounded using the constant comparative method. In all, 100 families were studied in their home settings in the District of Columbia and 29 states across the United States. Throughout the transitional process from disclosure of HIV through bereavement, families engaged in end-of-life decision-making. Their decision-making style was primarily cognitive or primarily emotional or somewhere in between. Families using a cognitive style of decision-making were less disrupted and more able to surmount hurdles and move toward goals. Exemplars from 23 families illustrated family decision-making and components of the transitional, family model.

Adaptation, Psychological↗
PubMedDate not supplied

Disclosure of cancer diagnosis to patients and their relatives in Turkey: views of accompanying persons and influential factors in reaching those views.

AIMS AND BACKGROUND: In Turkey, it is a common belief that most family members of patients with cancer would not want them to be informed of a diagnosis of cancer. Our aim was to evaluate the attitudes and opinions of people accompanying cancer patients, regarding cancer diagnosis disclosure. METHODS: In a cross-sectional study 270 caregivers accompanying cancer patients during outpatient chemotherapy sessions were asked to fill in a questionnaire to determine their opinions regarding whether the diagnosis of cancer should be disclosed to the patients and their relatives or not. Timing of telling the diagnosis and from whom it should be learned were queried as well. Possible influential factors for the answers were analyzed with the chi-square test. RESULTS: Of the 270 accompanying persons, 130 (48.2%) said that the patients should be informed of the diagnosis, whereas a greater number (236, 87.4%) believed that the patient's relatives should be informed. Being younger than 40 years old (P = 0.0005), being unmarried (P = 0.002), having a higher educational status (P = 0.0001) and having passed less than four months since the diagnosis (P = 0.005) positively affected opinions regarding telling the truth to the patient. Higher education (P = 0.012) and high monthly income (P = 0.002) positively affected opinions regarding disclosing a diagnosis of cancer to the patient's relatives. CONCLUSION: As a result, in a survey of caregivers' points of view, more than half of the accompanying persons did not agree with disclosing a cancer diagnosis to patients, whereas the majority agreed with disclosing it to the relatives, and educational level seemed to be the major influential factor.

Adolescent↗
PubMedDate not supplied

Disclosure of CAM use to medical practitioners: a review of qualitative and quantitative studies.

BACKGROUND: Many people use complementary or alternative medicine (CAM). It is estimated that over 50% of patients that require health care use CAM either in conjunction with, or separate from, conventional health care. Despite the popular use of CAM, patients do not always inform their conventional medicine health carers of their CAM use. The medical practitioner is in most cases the first health care professional a person contacts concerning a health care matter, and needs to have a full history of a health problem to understand and provide optimum care. This literature review aims to provide an understanding of the degree to which patients disclose their use of CAM to their medical practitioners, and their reasons for not doing so. METHOD: A comprehensive literature search identified 12 studies published between 1993 and 2002 that examined what percentage of consumers did not disclose to their medical practitioners their use of CAM, and their reasons for not doing so. RESULTS: The rate of non-disclosure of those using CAM is as high as 77% in some studies. The main reasons patients provided for not disclosing their use of CAM to their medical practitioners were concerns about a negative response by the practitioners, the belief that the practitioner did not need to know about their CAM use, and the fact that the practitioner did not ask. DISCUSSION: The pre-conceptions patients have that influence their non-disclosure may be based on three issues. First, beliefs and concerns that influence their decision-making, second personal experiences in their consultations with medical practitioners, and third, the desire for more control over their health care. Medical practitioners need to acknowledge the concerns and beliefs of patients in making their health care decisions, and work with patients so that the use of CAM is acknowledged and the patients' needs, beliefs and concerns respected.

Attitude of Health Personnel↗
PubMedDate not supplied

A mediation skills model to manage disclosure of errors and adverse events to patients.

In 2002 Pennsylvania became the first state to impose on hospitals a statutory duty to notify patients in writing of a serious event. If the disclosure conversations are carefully planned, properly executed, and responsive to patients' needs, this new requirement creates possible benefits for both patient safety and litigation risk management. This paper describes a model for accomplishing these goals that encourages health care providers to communicate more effectively with patients following an adverse event or medical error, learn from mistakes, respond to the concerns of patients and families after an adverse event, and arrive at a fair and cost-effective resolution of valid claims.

Humans↗
PubMed2006

Communicating a diagnosis of cerebral palsy: caregiver satisfaction and stress.

As part of the implementation of a population-based registry of children with cerebral palsy, caregiver satisfaction with the process by which diagnosis was originally communicated by a professional was assessed. Satisfaction with various aspects of the diagnosis process was assessed using a five-point Likert scale and related to child, family, and situational characteristics. Measures were then correlated with current caregiver stress as measured objectively by the Parenting Stress Inventory. During the registration process, 59 consecutive caregivers (55 mothers) were questioned. Overall, 62% (35/59) were satisfied with the disclosure process, with satisfaction ranging from 69% (41/59-hopefulness) to 92% (54/59-honesty) for professional qualities, and from 61% (36/59-sufficient information provided) to 78% (46/59-understandable) for disclosure content. Satisfaction was related to the quantity and content of information given at the disclosure session. Parenting Stress Inventory scores, both total and for parental distress, correlated significantly with both the severity of the child's cerebral palsy and caregiver satisfaction with varying elements of the disclosure process. Overall caregiver satisfaction with the process by which a diagnosis of cerebral palsy is given appears to be good. Together with the severity of a child's intrinsic cerebral palsy, it appears to relate to later parental adjustment to a setting of chronic disability, suggesting a portal through which improvements in information delivery may result in better familial adaptation to disability.

Adult↗
PubMed2004

Measurements for active cigarette smoke exposure in prevalence and cessation studies: why simply asking pregnant women isn't enough.

Tobacco smoke exposure during and after pregnancy may cause maternal, fetal, and infant morbidity and mortality. The purpose of this review is to (a). describe existing methods of measuring active tobacco exposure among pregnant women and (b). illustrate the usefulness of these measures in validating self-reported smoking status among these women. Medline, PsycINFO, and Academic Search Elite were used to identify measures of cigarette smoking exposure, prevalence reports, cessation and validity studies, and research on deception about smoking during pregnancy. Review of the research on smoking cessation among pregnant women since 1966 revealed that 36% of studies (9 out of 25) located used only self-report to assess smoking status. The remaining 16 studies used either significant other reports or at least one type of biochemical test to confirm self-report. Deception rates were reported at baseline only, follow-up only, or both in 15 studies. Three federal agencies in the United States collect data on self-reported smoking during pregnancy. Smoking prevalence rates are inconsistent among these agencies. This article demonstrates that measuring smoking status during pregnancy via self-report alone leads to discrepancies in national prevalence rates, deceptions in clinical practice disclosure, and inconsistencies in research study results. Evaluation studies that confirm smoking status among pregnant women by biochemical methods provide more accurate prevalence rates and lead to the most effective behavioral interventions to achieve cessation. National statistics should carry a disclaimer indicating the likelihood of underestimation. Researchers and clinicians should be trained in best-practice, evidence-based behavioral methods to assess prenatal smoking status and to assist those who desire to quit.

Adult↗
PubMed2005

Disclosing genetic test results to family members.

PURPOSE: To describe the experiences of disclosing genetic test results to biological family members among people tested for Huntington's disease (HD) or hereditary breast and ovarian cancer (HBOC). DESIGN: Grounded theory methodology. METHODS: Open-ended, tape-recorded interviews were conducted with 29 participants-24 who had received genetic test results and 5 who had decided not to be tested. The participants were from three countries, including 15 U.S. states. Interviews occurred from 2 months to 4 years after receiving test results. Tapes were transcribed and analyzed for conceptual categories to describe the experience of disclosing genetic test results. FINDINGS: Participants described the effects and meaning of disclosing test results to their various family members, and they selectively disclosed results to family members. The timing of disclosure was influenced by the particular disease and the person's perceived need to prepare. Disclosure of genetic test results brought the risk of HD and HBOC to the foreground, not only for the person tested but for family members as well. CONCLUSIONS: This study elucidated the perspective of the "discloser" and the consequences they anticipated and experienced.

Adaptation, Psychological↗