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Information given to patients about adverse effects of radiotherapy: a survey of patients' views.

AIMS: In practice, clinicians vary markedly in the amount of information they give to patients before consent for investigation or treatment is obtained. We present a study to evaluate the amount of information patients feel that they should be given. MATERIALS AND METHODS: Between October 2001 and February 2002, 82 adults were enrolled into the study before commencing treatment with radiotherapy. Participants were interviewed with the aid of a questionnaire, and responses were analysed to detect differences related to age, sex, disease site, treatment intent and social class. RESULTS: The distribution of responses to the interview was large. For a mild side-effect, 23 patients (28%) wanted to be informed if the risk of the side-effect was as small as 0.1%, whereas 25 patients (31%) would only want to be informed if there was either a 50% or a 100% chance of it occurring. For severe side-effects, 36 (44%) wanted to be informed of a 0.1% risk, whereas 13 (16%) only wanted to be informed if the risk was either 50% or 100%. There was no association with sex, treatment intent (radical or palliative), social class or disease site. Information requirements tended to be greater in people under 60 years. This reached statistical significance (P = 0.007) for severe side-effects, where younger patients were more likely to want to be informed of a side-effect if there was a 10% or less chance of it occurring. CONCLUSIONS: Information needs varied widely within our survey population. It is difficult to predict how much information patients feel they need before giving informed consent. Therefore, a patient-centred approach must involve tailoring information to individual patient requirements.

Adult↗

Construction and practice of medical responsibility: dilemmas and narratives from geriatrics.

A narrative approach is employed in this article about dilemmas and physician reasoning in geriatric medicine in order to explore the moral-medical worlds of urban American physicians. Reconstructed dilemmas, in the form of stories told by 51 doctors, are analyzed as cultural documents of both clinical-moral knowledge and practice and the physician as moral actor. Discussion focuses on ways in which responsibility is constituted and enacted through a particular language of clinical action. This analysis opens the subject of bioethics to a range of infrequently discussed issues that physicians cite as deeply troubling and contributes to a broadening of anthropological approaches useful in the study of bioethics.

Aged↗

Menstrual cycle length and the calculation of gestational age.

The method of estimating gestational age that is most commonly employed by epidemiologists calculates age as the time between the first day of the last menstrual period and the date of birth. The method assumes an invariant 28-day menstrual cycle with ovulation occurring at midcycle. Data from 5,688 mothers and their infants who were enrolled in the Boston sector of the National Collaborative Perinatal Project from 1959 through 1965 were used to study whether this is a valid assumption by examination of the association between gestational age and cycle length. In addition, two methods for adjusting gestational age for cycle length were explored: 1) the Ogino-Knaus adjustment which assumes that the postovulatory phase of the menstrual cycle is a constant 14 days long, and 2) an empirically derived approach. Cycle length was grouped into five categories. With the last menstrual period method, the proportion of postterm (more than 42 weeks) and postdate (more than 40 weeks) births increased with longer cycle lengths (from 0 to 14.6% for postterm and from 21.0 to 53.7% for postdate). With the Ogino-Knaus correction, the trend was weaker and in the opposite direction (10.5 to 2.4% for postterm and 57.9 to 22.0% for postdate). With the empirically derived method, these trends were virtually eliminated (5.3 to 9.8% for postterm and 36.7 to 36.5% for postdate). The results suggest that the previously reported tendency for the last menstrual period method to yield a high proportion of postdate and postterm deliveries may, in part, be due to misclassification of gestational age in women with long menstrual cycles. The Ogino-Knaus method appears to overcorrect for cycle length. The empirically derived method needs further validation; however, it does suggest potential directions to be explored.

Bias↗

Predictors of medical and nursing students' levels of HIV-AIDS knowledge and their resistance to working with AIDS patients.

Among health professionals, knowledge about the human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) is often limited, inaccurate, or both. Many health professionals also resist working with AIDS patients. This 1988 survey examined exaggerated risk estimates for HIV contagion in relationship to HIV-AIDS knowledge and resistance to working with AIDS patients among medical and nursing students at a large Northwestern teaching hospital. The results indicate that among the respondents, exaggerated risk estimates were associated both with a lack of HIV-AIDS knowledge and with greater resistance to working with AIDS patients. Results from multiple regression analyses revealed that (1) a lack of clinical experience with AIDS patients and (2) antihomosexual attitudes were significantly associated with the students' lack of HIV-AIDS knowledge, even after controlling for the effects of exaggerated risk estimates. The first two variables also were shown to be significantly predictive of the students' resistance to working with AIDS patients, as was an intolerance of drug use and drug users, beyond the influence of exaggerated risk estimates. Specific approaches of developing effective HIV-AIDS educational programs for health professionals are proposed.

Acquired Immunodeficiency Syndrome↗

Medical advance care planning for persons with serious mental illness.

OBJECTIVE: This study examined preferences regarding medical advance care planning among persons with serious mental illness, specifically, experience, beliefs, values, and concerns about health care proxies and end-of-life issues. METHODS: A structured interview, the Health Care Preferences Questionnaire, was administered to a convenience sample of 150 adults with serious mental illness who were receiving community-based services from the Massachusetts Department of Mental Health. Clinical information and demographic data were also collected. RESULTS: A total of 142 participants completed the questionnaire. Although more than one-quarter had thought about their medical treatment preferences in the event that they became seriously medically ill, very few had discussed these preferences. A majority of respondents (72 percent) believed that someone should be designated to make medical health care decisions for a person who is too sick to make or communicate these decisions him- or herself. Common end-of-life concerns included financial and emotional burdens on family, pain and suffering, interpersonal issues such as saying "goodbye," spiritual issues, and funeral arrangements. Participants were most uneasy about the prolonging or stopping of life support by proxy decision makers. A total of 104 respondents (69 percent) expressed interest in formally selecting a health care proxy. CONCLUSIONS: Although persons with serious and persistent mental illness have little experience with medical advance care planning, they show substantial interest in it. Furthermore, they are able to consider and communicate their preferences. This study supports the feasibility, acceptability, and utility of a standardized approach to medical advance care planning with this population.

Acute Disease↗

Family concerns about hospitalizing a patient in a psychiatric research unit.

Family members involved in a patient's hospitalization on a psychiatric research unit have special concerns related to the choice of the unit and the conduct of the patient's treatment. Based on work with 350 families of patients on a research unit, the authors describe families' motivations for choosing the unit and the expectations and misconceptions they may develop during the patient's stay. Certain interventions are specifically directed to family members' concerns about research, including providing information and education, monitoring informed consent, and working through how the family's expectations of treatment match actual treatment outcome. Most families are able to conceptualize the research approach adequately and to use the supportive relationship with the unit's family advocate to deal with their ambivalence about the approach.

Adult↗

Physicians' and nurses' perceptions of ethics problems on general medical services.

OBJECTIVE: To understand the kinds of clinical situations physicians and nurses regard as "ethics problems." DESIGN: The authors prospectively studied physicians' and nurses' perceptions of ethics problems using paired interviews. Individual interviews were conducted with physicians and nurses as they cared for the same patients during a six-week period. Each was asked whether any ethics problems had arisen in the care of his or her patients and, if so, to give a brief description of each problem. SETTING: Three general medical services in a 497-bed community teaching hospital. PARTICIPANTS: 13 physicians (mostly family medicine residents) and 42 nurses caring for 142 patients. MAIN RESULTS: The physicians and nurses thought ethics problems were present in 75 of the 142 patients cases. Physicians and nurses identified ethics problems with similar frequencies; however, they often identified ethics problems in different patient cases or identified different ethics problems in the same case. Physicians and nurses described a variety of problem types. Physicians identified more problems related to quality of life, inappropriate hospital admissions, and cost of care; nurses identified more problems related to patient preferences, family wishes, pain management, implementing treatments, and discharge planning. A fourth of the ethics problems identified by physicians and nurses involved interstaff conflicts. CONCLUSIONS: The physicians and nurses studied considered a broad range of clinical situations to be "ethics problems," and they perceived them to occur frequently. Systematic differences were found between physicians' and nurses' perceptions of ethics problems, and many ethics problems generated interstaff conflicts. Incorporating this kind of information into clinical ethics education programs, and into hospital policies, may represent a useful approach toward improving physician-nurse interaction.

Adult↗

Assisted dying and end-of-life symptom management.

This qualitative study aimed to describe symptom management strategies oncology nurses have used in responding to and preventing requests of terminally ill patients with cancer for assisted dying (AD). The study involved secondary analysis of written stories from 36 nurses who agreed to describe their experiences with a request for assisted dying. Of the 36 nurses, 12 refused to support patient requests for AD and described their attempts to control the circumstances of dying by controlling symptoms. The remaining 24 nurses denied ever receiving requests for AD and described symptom management practices believed to prevent such requests. Data were analyzed using Denzin's process of interpretive interactionism. Two themes emerged from the participant's stories: alternative strategies for AD and prevention of requests for AD. The participants shared many examples of clinical interventions and other features of nursing responses to relieve or prevent suffering including physical, emotional, and spiritual care practices; comfort and medication management; and service as teacher-advocate. Both the nurses who had received requests for AD and those who had not used a variety of similar symptom management approaches to alleviate suffering. In doing so, these nurses upheld current standards of both their professional and specialty organizations.

Attitude of Health Personnel↗

Effect of receiving a heart transplant: analysis of a national cohort entered on to a waiting list, stratified by heart failure severity. Comparative Outcome and Clinical Profiles in Transplantation (COCPIT) Study Group.

OBJECTIVE: To determine whether there is a survival benefit associated with cardiac transplantation in Germany. DESIGN: Prospective observational cohort study. SETTING: All 889 adult patients listed for a first heart transplant in Germany in 1997. MAIN OUTCOME MEASURE: Mortality, stratified by heart failure severity. RESULTS: Within 1 year after listing, patients with a predicted high risk had the highest global death rate (51% v 32% and 29% for medium and low risk patients respectively; P<0.0001), had the highest risk of dying on the waiting list (32% v 20% and 20%; P=0.0003), and were more likely to receive a transplant (48% v 45% and 41%; P=0.01). Differences between the risk groups in outcome after transplantation did not reach significance (P=0.2). Transplantation was not associated with a reduction in mortality risk for the total cohort, but it did provide a survival benefit for the high risk group. CONCLUSION: Cardiac transplantation in Germany is currently associated with a survival benefit only in patients with a predicted high risk of dying on the waiting list. Patients with a predicted low or medium risk have no reduction in mortality risk associated with transplantation; they should be managed with organ saving approaches rather than transplantation.

Acute Disease↗

Sanctions against sexual abuse of patients by doctors: sex differences in attitudes among young family physicians.

OBJECTIVE: To explore attitudes of new-to-practice certified family physicians in Ontario concerning sanctions against sexual abuse of patients by physicians and to assess the importance of concern about accusations of sexual abuse in influencing clinical decisions. DESIGN: Qualitative study and cross-sectional survey. SETTING: Ontario. PARTICIPANTS: Focus groups: 34 physicians who completed family medicine residency training between 1984 and 1989 participated in seven focus groups between June and October 1992. SURVEY: all certificants of the College of Family Physicians of Canada who received certification between 1989 and 1991 and were currently practising in Ontario. Of the 564 eligible physicians 395 (184 men and 211 women) responded, for an overall response rate of 70.0%. The response rates among the male and female physicians were 70.5% and 69.6% respectively. OUTCOME MEASURES: Physicians' attitudes toward restricting physical examinations done by physicians to same-sex patients, mandatory reporting of sexual impropriety and loss of licence in cases of sexual violation and the perceived importance of concern about accusations of sexual abuse as an influence on clinical decisions. RESULTS: During the focus groups male physicians in particular expressed concerns about the effect on their practice patterns of the current climate regarding sexual abuse of patients. Female physicians were less concerned about possible accusations of sexual abuse but expressed concerns regarding possible sexualization of the clinical encounter by male patients. In the survey equal proportions of men (163 [93.7%]) and women (191 [92.3%]) disagreed with restricting examinations to same-sex patients. The women were more likely than the men to agree that all suspected cases of sexual impropriety committed by other physicians should be reported (121 [58.7%] v. 86 [50.0%]), whereas the men were more likely to disagree (48 [27.9%] v. 32 [15.5%]) (p = 0.008). The women were also more likely than the men to agree that physicians should lose their licence permanently if they were found guilty of sexual violation (125 [62.2%] v. 73 [43.5%]), whereas the men were more likely to disagree (61 [36.3%] v. 37 [18.4%]) (p < 0.001). Almost half of the men (80 [46.5%]) but only 28 women (14.1%) reported that concerns about accusations of sexual abuse were of importance in their clinical decisions (p < 0.001). CONCLUSIONS: Young female family physicians practising in Ontario are much more likely than their male counterparts to endorse permanent loss of licence for physicians who sexually abuse patients and are significantly less concerned about accusations against themselves. Neither sex endorses only same-sex examinations by physicians. Educational approaches to protect patients while ensuring that appropriate care continues to be delivered are essential.

Attitude↗

Gender and ethics committees: where's the 'different voice'?

Prominent international and national ethics commissions such as the UNESCO International Bioethics Committee rarely achieve anything remotely resembling gender equality, although local research and ethics committees are somewhat more egalitarian. Under-representation of women is particularly troubling when the subject matter of modern bioethics so disproportionately concerns women's bodies, and when such committees claim to derive 'universal' standards. Are women missing from many ethics committees because of relatively straightforward, if discriminatory, demographic factors? Or are the methods of analysis and styles of ethics to which these bodies are committed somehow 'anti-female'? It has been argued, for example, that there is a 'different voice' in ethical reasoning, not confined to women but more representative of female experience. Similarly, some feminist writers, such as Evelyn Fox Keller and Donna Haraway, have asked difficult epistemological questions about the dominant 'masculine paradigm' in science. Perhaps the dominant paradigm in ethics committee deliberation is similarly gendered? This article provides a preliminary survey of women's representation on ethics committees in eastern and western Europe, a critical analysis of the supposed 'masculinism' of the principlist approach, and a case example in which a 'different voice' did indeed make a difference.

Advisory Committees↗

Nurses' attitudes to terminally ill patients.

BACKGROUND: The care of terminally ill patients is a challenge for nurses that has raised special interest in recent years. Several studies have shown a stereotyped negative attitude in nurses towards terminally ill patients. However, all have used methods with several limitations. AIM: The aim of the study presented in this paper was to identify the nurses' attitude to the terminally ill patient in Catalonia, Spain, and the relationship of this attitude to different socio-demographic data (type of centre, shift, years of experience, age and sex) by means of a new quantitative method based on the free word-association test. METHODS: One hundred and seventy-five nurses working in 18 hospitals and hospices in Catalonia, Spain were included in the study. Data were analysed by the Associative Semantic Field Differential method by means of the computer programme CONTEXT and a quantitative evaluation of the degree of attitudes positivity was obtained. RESULTS: The study revealed a general slight negative trend in attitudes towards the terminally ill patient. A more positive attitude was observed in older caregivers and in women. The positivity in attitude decreased from morning to night shift. No differences were observed between nurses working in hospitals and those working in hospices. CONCLUSIONS: We conclude that nursing attitudes can be analysed by methods such as that used in this study. Attempts can be made to modify this attitude in caregivers by means of training programmes and stimulating awareness of an adequate professional approach.

Adult↗

What makes an error unacceptable? A factorial survey on the disclosure of medical errors.

BACKGROUND: Although the importance of disclosing medical errors to patients has been argued, little is known about the relative effect of different attributes of error handling and communication on patients' judgments about errors. OBJECTIVES: This study investigates how different characteristics of medical errors and of physicians' subsequent handling of errors contribute to patients' evaluations of the incident and their attitudes towards potential consequences and sanctions for the physician. MATERIALS AND METHODS: A factorial survey using the vignette technique presented hypothetical scenarios involving medical errors to members of the general public in an Internet-based study. Members of a German Internet survey panel participated (n = 1017). Multiple ordered logistic regression models were estimated to explain citizens' judgments of error severity and their attitudes towards reporting of errors, wishing for referral to another physician, and supporting sanctions against the health professional involved as a response to characteristics of the presented errors. RESULTS: While the severity of the outcomes of errors remains the most important single factor in the choice of actions to be taken, the professional's approach to the error is regarded as essential in the overall evaluation of errors and the consideration of consequences. In errors with a severe outcome, an honest, empathic, and accountable approach to the error decreases the probability of participants' support for strong sanctions against the physician involved by 59%. Judgments were only marginally affected by respondents' characteristics. CONCLUSIONS: The handling of errors strongly contributes to citizens' choice of actions to be taken, and they are sensitive to failures to name the incident as an 'error'. For the success of de-individualized, systems-oriented approaches to errors, communication of clear accountability to patients will be crucial.

Adolescent↗

Clinical myths of the cultural "other": implications for Latino patient care.

PURPOSE: Cultural competency is now a requirement in the curriculum of many health professions. However, clinicians' understandings of cultural difference, the accuracy of those understandings, and their impact on patient care have not yet been carefully explored. The authors conducted an ethnographic study designed to describe clinicians' views of Latino culture in the context of amniocentesis decision making, compared those to patients' discussions of their decision making, and explored how clinicians' views about culture are manifested in consultations with Latinas. METHOD: Between 2000 and 2002, semistructured, open-ended interviews were conducted in southern Texas with convenience samples of 50 clinicians who discuss prenatal testing with patients, and 40 self-identified Latina patients who had been offered amniocentesis. Observations were also made of 101 genetic counseling sessions. Content analysis focused on the cultural characteristics clinicians identified as affecting Latinas' decision making, patients' self-reported decision-making processes, and clinician and patient comments and actions observed during genetics counseling sessions. RESULTS: Most clinicians said Latinas are likely to decline amniocentesis because they are religious, fatalistic, male-dominated, family-centered, and superstitious. However, patients' discussions of their decision making were not consistent with these characterizations. Furthermore, clinicians reported providing less complete information to Latina patients in their efforts to be culturally sensitive. CONCLUSIONS: Comparing patient and clinician interviews bring into question clinicians' notion of Latino culture's role in amniocentesis decision making. Efforts to be "culturally competent," in the absence of a patient-centered approach, may unintentionally encourage stereotyping, thereby negatively affecting the quality and content of clinical care.

Adolescent↗

Evaluation of the research norms of scientists and administrators responsible for academic research integrity.

CONTEXT: The professional integrity of scientists is important to society as a whole and particularly to disciplines such as medicine that depend heavily on scientific advances for their progress. OBJECTIVE: To characterize the professional norms of active scientists and compare them with those of individuals with institutional responsibility for the conduct of research. DESIGN: A mailed survey consisting of 12 scenarios in 4 domains of research ethics. Respondents were asked whether an act was unethical and, if so, the degree to which they considered it unethical and to select responses and punishments for the act. PARTICIPANTS: A total of 924 National Science Foundation research grantees in 1993 or 1994 in molecular or cellular biology and 140 representatives from the researchers' institutions to the US Department of Health and Human Services Office of Research Integrity. MAIN OUTCOME MEASURES: Percentage of respondents considering an act unethical and the mean malfeasance rating on a scale of 1 to 10. RESULTS: A total of 606 research grantees and 91 institutional representatives responded to the survey (response rate of 69% of those who could be contacted). Respondents reported a hierarchy of unethical research behaviors. The mean malfeasance rating was unrelated to the characteristics of the investigator performing the hypothetical act or to its consequences. Fabrication, falsification, and plagiarism received malfeasance ratings higher than 8.6, and virtually all thought they were unethical. Deliberately misleading statements about a paper or failure to give proper attribution received ratings between 7 and 8. Sloppiness, oversights, conflicts of interest, and failure to share were less serious still, receiving malfeasance ratings between 5 and 6. Institutional representatives proposed more and different interventions and punishments than the scientists. CONCLUSIONS: Surveyed scientists and institutional representatives had strong and similar norms of professional behavior, but differed in their approaches to an unethical act.

Biomedical Research↗

Staged informed consent for a randomized clinical trial in childhood leukemia: impact on the consent process.

BACKGROUND: Children Cancer Group (CCG) 1991 is the first childhood acute lymphoblastic leukemia trial within CCG that allowed the utilization of a staged approach to the consent process. METHODS: One hundred and forty subjects participated in the Project on Informed Consent which compared the primary outcome measures in the consent process of patients enrolled in CCG-1991 with those enrolled in other CCG leukemia studies. RESULTS: The parents' trust scores were higher for the CCG-1991 compared with other protocols. Eighty percent of parents enrolled in CCG-1991 understood the distinction between the randomized clinical trial and the standard treatment arm, compared with 62.5% in the other studies, P = 0.05. Multiple other outcome measures suggested a positive impact from staged informed consent. CONCLUSIONS: Our results suggest that a consent process with a staged approach can help investigators obtain a more truly informed consent. Future research is needed to confirm the benefits of the staged approach to the informed consent process.

Child↗

Empowerment of dying patients: the strategies and barriers to patient autonomy.

The growing debate about the ability of the nurse to empower patients has featured frequently in the nursing journals over recent years. This paper seeks to address the issue around the need to empower dying patients by an examination of nurses' written reflections on critical incidents in their practice. Geertz's 'thick description' has been used to interpret the data. The issues of power and professionalism are central to the discussion. The results are tentative given the sample size but point towards a redefinition of the empathetic approach and the adoption of a 'facilitative' approach to the sharing of power. The paper recommends careful examination of the role of the nurse and the communication process to identify further barriers to patient empowerment.

Communication Barriers↗

Attitudes of first-year medical students toward the confidentiality of computerized patient records.

OBJECTIVES: To investigate the attitudes of students entering medical school toward the confidentiality of computerized medical records. DESIGN: First-year medical students at the Vanderbilt University School of Medicine responded to a series of questions about a hypothetic breach of patient's privacy through a computerized patient record system. MEASUREMENTS: The individual authors independently grouped the blinded responses according to whether they were consistent with then-current institutional policy. These preliminary groupings were discussed, and final categorizations were made by consensus. RESULTS: While most students had a sense of what was right and wrong in absolute terms, half the class suggested at least one course of action that was deemed to be inconsistent with institutional policies. CONCLUSIONS: The authors believe that medical schools should directly address ethical and legal issues related to the use of computers in clinical practice as an integral part of medical school curricula. Several teaching approaches can facilitate a greater awareness of the issues surrounding technology and medicine.

Academic Medical Centers↗