Ethnicity, bioethics, and prenatal diagnosis: the amniocentesis decisions of Mexican-origin women and their partners.
Bioethical standards and counseling techniques that regulate prenatal diagnosis in the United States were developed at a time when the principal constituency for fetal testing was a self-selected group of White, well-informed, middle-class women. The routine use of alpha-fetoprotein (AFP) testing, which has become widespread since the mid-1980s, introduced new constituencies to prenatal diagnosis. These new constituencies include ethnic minority women, who, with the exception of women from certain Asian groups, refuse amniocentesis at significantly higher rates than others. This study examines the considerations taken into account by a group of Mexican-origin women who had screened positive for AFP and were deciding whether to undergo amniocentesis. We reviewed 379 charts and interviewed 147 women and 120 partners to test a number of factors that might explain why some women accept amniocentesis and some refuse. A woman's attitudes toward doctors, medicine, and prenatal care and her assessment of the risk and uncertainty associated with the procedure were found to be most significant. Case summaries demonstrate the indeterminacy of the decision-making process. We concluded that established bioethical principles and counseling techniques need to be more sensitive to the way ethnic minority clients make their amniocentesis choices. (+info)
Would you like to know what is wrong with you? On telling the truth to patients with dementia.
OBJECTIVES: To discover what dementia sufferers feel is wrong with them; what they have been told and by whom, and what they wish to know about their illness. BACKGROUND: Ethical guidelines regarding telling truth appear to be equivocal. Declarations of cognitively intact subjects, attitudes of family members and current psychiatric practice all vary, but no previous research has been published concerning what patients with dementia would in fact like to know about their diagnosis and prognosis. DESIGN: Questionnaire study of the patients' opinions. SETTING: Old Age Psychiatry Service in Worcester. PARTICIPANTS: 30 consecutive patients with dementia. RESULTS: The quality of information received has been poor and many patients have no opportunity to discuss their illness with anybody. Despite that almost half of the participants in this study had adequate insight and a majority declared that they would like to know more about their predicament. CONCLUSIONS: Although many patients would like to know the truth, the rights of those who do not want to know should also be respected. Therefore the diagnosis of dementia should not be routinely disclosed but (just as in other disorders) health care professionals should seek to understand their patients' preferences and act appropriately according to their choice. (+info)
Talking about cases in bioethics: the effect of an intensive course on health care professionals.
Educational efforts in bioethics are prevalent, but little is known about their efficacy. Although previous work indicates that courses in bioethics have a demonstrable effect on medical students, it has not examined their effect on health care professionals. In this report, we describe a study designed to investigate the effect of bioethics education on health care professionals. At the Intensive Bioethics Course, a six-day course held annually at Georgetown University, we administered a questionnaire requiring open-ended responses to vignettes both before and after the course. Following the course, respondents defended their responses more carefully and articulated their thoughts more clearly. In addition, after the course respondents seemed to have a more subtle understanding of the relevant issues in the cases and applied theory to these cases more frequently. These findings help to formulate an understanding of the effect of bioethics education on health care professionals. (+info)
Priority setting for new technologies in medicine: qualitative case study.
OBJECTIVE: To describe priority setting for new technologies in medicine. DESIGN: Qualitative study using case studies and grounded theory. SETTING: Two committees advising on priorities for new technologies in cancer and cardiac care in Ontario, Canada. PARTICIPANTS: The two committees and their 26 members. MAIN OUTCOME MEASURES: Accounts of priority setting decision making gathered by reviewing documents, interviewing members, and observing meetings. RESULTS: Six interrelated domains were identified for priority setting for new technologies in medicine: the institutions in which the decision are made, the people who make the decisions, the factors they consider, the reasons for the decisions, the process of decision making, and the appeals mechanism for challenging the decisions. CONCLUSION: These domains constitute a model of priority setting for new technologies in medicine. The next step will be to harmonise this description of how priority setting decisions are made with ethical accounts of how they should be made. (+info)
Collusion in doctor-patient communication about imminent death: an ethnographic study.
OBJECTIVE: To discover and explore the factors that result in "false optimism about recovery" observed in patients with small cell lung cancer. DESIGN: A qualitative observational (ethnographic) study in two stages over four years. SETTING: Lung diseases ward and outpatient clinic in university hospital in the Netherlands. PARTICIPANTS: 35 patients with small cell lung cancer. RESULTS: "False optimism about recovery" usually developed during the (first) course of chemotherapy and was most prevalent when the cancer could no longer be seen in the x ray pictures. This optimism tended to vanish when the tumour recurred, but it could develop again, though to a lesser extent, during further courses of chemotherapy. Patients gradually found out the facts about their poor prognosis, partly because of physical deterioration and partly through contact with fellow patients who were in a more advanced stage of the illness and were dying. "False optimism about recovery" was the result an association between doctors' activism and patients' adherence to the treatment calendar and to the "recovery plot," which allowed them not to acknowledge explicitly what they should and could know. The doctor did and did not want to pronounce a "death sentence" and the patient did and did not want to hear it. CONCLUSION: Solutions to the problem of collusion between doctor and patient require an active, patient oriented approach from the doctor. Perhaps solutions have to be found outside the doctor-patient relationship itself - for example, by involving "treatment brokers." (+info)
The potential for research-based information in public health: identifying unrecognised information needs.
OBJECTIVE: To explore whether there is a potential for greater use of research-based information in public health practice in a local setting. Secondly, if research-based information is relevant, to explore the extent to which this generates questioning behaviour. DESIGN: Qualitative study using focus group discussions, observation and interviews. SETTING: Public health practices in Norway. PARTICIPANTS: 52 public health practitioners. RESULTS: In general, the public health practitioners had a positive attitude towards research-based information, but believed that they had few cases requiring this type of information. They did say, however, that there might be a potential for greater use. During five focus groups and six observation days we identified 28 questions/cases where it would have been appropriate to seek out research evidence according to our definition. Three of the public health practitioners identified three of these 28 cases as questions for which research-based information could have been relevant. This gap is interpreted as representing unrecognised information needs. CONCLUSIONS: There is an unrealised potential in public health practice for more frequent and extensive use of research-based information. The practitioners did not appear to reflect on the need for scientific information when faced with new cases and few questions of this type were generated. (+info)
Guidelines as rationing tools: a qualitative analysis of psychosocial patient selection criteria for cardiac procedures.
BACKGROUND: Cardiac procedure guidelines often include psychosocial criteria for selecting patients that potentially introduce social value judgements into clinical decisions and decisions about the rationing of care. The aim of this study was to investigate the terms and justifications for and the meanings of psychosocial patient characteristics used in cardiac procedure guidelines. METHODS: We selected English-language guidelines published since 1990 and chapters in textbooks published since 1989. These guidelines amalgamated multiple sources of evidence and expertise and made recommendations regarding patient selection for specific procedures. A multidisciplinary team of physicians and social scientists extracted passages regarding psychosocial criteria and developed categories and conceptual relationships to describe and interpret their content. RESULTS: Sixty-five papers met the criteria for inclusion in the study. Forty-five (69%) mentioned psychosocial criteria as procedure indications or contraindications. The latter fell into several categories, including behavioural and psychological issues, relationships with significant others, financial resources, social roles and environmental circumstances. INTERPRETATION: Psychosocial characteristics are portrayed as having 2 roles in patient selection: as risk factors intrinsic to the candidate or as indicators of need for special intervention. Guidelines typically simply list psychosocial contraindications without clarifying their specific nature or providing any justification for their use. Psychosocial considerations can help in the evaluation of patients for cardiac procedures, but they become ethically controversial when used to restrict access. The use of psychosocial indications and contraindications could be improved by more precise descriptions of the psychosocial problem at issue, explanations regarding why the criterion matters and justification of the characteristic using a biological rationale or research evidence. (+info)
Collusion in doctor-patient communication about imminent death: an ethnographic study.
OBJECTIVE: To discover and explore the factors that result in the "false optimism about recovery" observed in patients with small cell lung cancer. DESIGN: A qualitative observational (ethnographic) study in 2 stages over 4 years. SETTING: Lung diseases ward and outpatient clinic in a university hospital in the Netherlands. PARTICIPANTS: 35 patients with small cell lung cancer. RESULTS: False optimism about recovery usually developed during the first course of chemotherapy and was most prevalent when the cancer could no longer be seen on x-ray films. This optimism tended to vanish when the tumor recurred, but it could develop again, though to a lesser extent, during further courses of chemotherapy. Patients gradually found out the facts about their poor prognosis, partly by their physical deterioration and partly through contact with fellow patients in a more advanced stage of the illness who were dying. False optimism about recovery was the result of an association between physicians' activism and patients' adherence to the treatment calendar and to the "recovery plot," which allowed them to avoid acknowledging explicitly what they should and could know. The physician did and did not want to pronounce a "death sentence," and the patient did and did not want to hear it. CONCLUSION: Solutions to the problem of collusion between physician and patient require an active, patient-oriented approach by the physician. Perhaps solutions have to be found outside the physician-patient relationship itself--for example, by involving "treatment brokers." (+info)