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A number of screening procedures are offered by midwives during pregnancy and the number is increasing rapidly. The measurement of nuchal translucency is a fairly new ultrasound method for antenatal screening, primarily for Down syndrome. The results give a better risk calculation than maternal age alone and can mean a decrease in the number of invasive procedures needed to identify this syndrome prenatally. The aim of this study was to gain insight into the midwives' point of view concerning the introduction of the method in two different hospitals. In one hospital it had been introduced as part of a research project while in the other it had been integrated as an offer in the antenatal care programme. A questionnaire was sent to the 80 midwives working in the antenatal clinics serving these two hospitals. A total of 79% of the questionnaires were answered. The results indicate that in both districts, the similarities are greater than the differences with regard to the midwives' education, knowledge and their own opinions of their ability to inform pregnant women about the method. Although most of the respondents were positive to it, a number of midwives felt that, in general, information about foetal diagnosis was a difficult part of their work, mentioning both ethical and practical aspects. This highlights the need for continuing education, standardized policy and an ongoing ethical debate.

Objectives: The aim of this paper is to examine the way in which nurses manage patients who refuse nursing care procedures., Design: This paper reports on a qualitative study which was undertaken to explore the way in which nurses obtain consent prior to nursing care procedures. Focus groups were carried out to obtain background data concerning how consent is obtained. Critical incidents were collected through in depth interviews as a means of focusing on specific incidents in clinical practice., Setting: Two teaching hospitals in England., Participants: Purposive sample of qualified nurses., Results: When a patient refuses nursing care, nurses respond by giving information until the patient finally accedes to the procedure. Nurses will go to great lengths to achieve patients' agreement to the procedure, but the extent to which the agreement remains voluntary cannot be ascertained by the data collected in this study. If the patient does not eventually agree to a procedure, there is evidence that nurses will administer the care in the absence of consent., Conclusions: Nurses are concerned to obtain the patient's consent prior to the administration of nursing care but if this cannot be achieved do not regard obtaining consent as an absolute requirement. Consent is preferred, but not considered essential. Nurses have some understanding of the principles of informed consent but do not apply them to everyday clinical nursing practice.

Cost pressures and changes in the health care environment pose ethical challenges and hard choices for patients, physicians, policymakers, and society. In 2000 and 2001, the American College of Physicians, with the Harvard Pilgrim Health Care Ethics Program, convened a working group of stakeholders--patients, physicians, and managed care representatives, along with medical ethicists--to develop a statement of ethics for managed care. The group explored the impact of a changing health care environment on patient-physician relationships and how to best apply the principles of professionalism in this environment. The statement that emerged offers guidance on preserving the patient-clinician relationship, patient rights and responsibilities, confidentiality and privacy, resource allocation and stewardship, the obligation of health plans to foster an ethical environment for the delivery of care, and the clinician's responsibility to individual patients, the community, and the public health, among other issues.

Patients' end-of-life decisions challenge nurses to improve palliative care, symptom management, and patient advocacy, and examine ethical issues. When terminally ill patients take charge of the last stages of life, they may challenge nurses to reexamine attitudes about lifesaving technology and autonomy and values about preserving life. Staff members can become benevolent and believe that they know what is best despite the patient's independent decisions. When patients unsuccessfully decline continued aggressive, life prolonging strategies, they may decide to hasten dying rather than accept a natural death. Researchers (Breitbart WS et al. JAMA. 2000;284:2907-2911) defined desire for hastened death as a unifying construct underlying requests for assisted suicide, euthanasia, and withdrawal of food and fluids. When a terminally ill patient considers a hastened death, the nurse needs to examine the patient's mental health, symptom management, advance directives, and decision making. Medical and psychological symptoms and spiritual distress often trigger thoughts of hastening death even when pain and symptoms have been treated (Breitbart WS et al. JAMA. 2000;284:2907-2911). Ethical issues and guidelines for management of patients and evaluation of rationality are presented.

Objective: To describe opportunities and obligations for pharmacists regarding doping control in sports, and to present information and resources on drugs and dietary supplements that are popular among athletes for performance enhancement., Data Sources: Sports medicine journals and articles in English obtained from Medline (1966 through June 2003) using the search terms doping in sports, drugs in sports, dietary supplements, sports, amphetamine, stimulants, ephedrine, ephedra, caffeine, anabolic steroids, human growth hormone, erythropoietin, darbepoetin, androstenedione, dehydroepiandrosterone, and creatine. Information was also obtained from sports-governing agencies, such as the National Collegiate Athletic Association and the International Olympic Committee., Study Selection: Studies and reports that were credible and scientifically sound that evaluated the ergogenic effects of drugs and dietary supplements., Data Extraction: By the author., Data Synthesis: Pharmacists can participate in doping control programs in a number of ways. Pharmacists also have an obligation when counseling, advising, and treating athletes to help them avoid banned substances. Athletes use a host of drugs for their performance-enhancing effects, many of which are banned by major sports-governing bodies. Myriad dietary supplements are marketed to athletes, claiming to have ergogenic effects. Some of these popular supplements have proven performance-enhancing effects, while others do not. Adverse effects of these drugs and dietary supplements are discussed., Conclusion: A variety of drugs and dietary supplements have proven performance-enhancing effects in athletes. However, many of these substances have adverse effects and are banned by various sports-governing organizations. Pharmacists can play a key role in participating in doping control programs, and can prevent athletes from inadvertently consuming a banned substance.

Nurses and nurse midwives have historically considered patient education one of their most important responsibilities. Increasingly, however, appropriate and comprehensive patient education has become more difficult to accomplish. There are many reasons for this, including the huge influx of clients of varying cultures into virtually all health care systems across the United States, the lack of time available for patient education in tightly scheduled managed care visits, the dearth of educational materials written at appropriate readability levels and/or in languages other than English, and the lack of reimbursement for time spent on patient education. In addition, many providers might not have specific training in the provision of patient education or in the development of appropriate health educational materials for the population they serve. This article discusses these issues, suggesting also that there are ethical dilemmas inherent in the provision of some aspects of patient education.

A great deal has been written about information that is or should be provided when seeking consent to medical research and treatment. Relatively little attention has been paid to information describing health promotion interventions. This paper critically examines some information material describing three different methods of encouraging early presentation of breast cancer in the UK: the NHS breast screening programme, breast self examination, and breast awareness. Findings from a content analysis of printed material and a series of focus group discussions that included women who speak little or no English were organised around the Department of Health's recommendations about the information which should be provided when seeking consent to treatment and research. They exposed inconsistencies, ambiguities, and gaps, which when taken together suggest both compliance and non-compliance are being achieved in the absence of informed consent. The findings also provide a starting point for a discussion about how informed consent to health promotion might be sought.

Purpose: The ethical and practical issues in disclosing a dementia diagnosis remain subjects of some debate. In this review of the literature we document previous opinion and practice in the area of diagnostic disclosure., Design and Methods: We identified sources for this review with a MEDLINE and PsycINFO database search, followed by collection of additional articles from reference lists., Results: Across sources we were able to identify a broad list of arguments both for and against diagnostic disclosure. We briefly discuss some of the ethical principles that undergird those reasons., Implications: Practice guidelines and professional opinion regarding disclosure appear to depart from the actual experience reported by clinicians, patients, and family members. At a more detailed level, process issues in disclosure, such as who is told, how and what they are told, and the impact of disclosure, are poorly understood. Sensitivity to individual differences may promote an optimal approach to disclosure. Research in this area is sparse and often contradictory, and throughout the review we propose research questions that, when answered, could clarify issues in disclosure that are essential to sound dementia care.

Because of demographic trends, it is reasonable to expect that clinicians will care for an increasing number of elderly persons with challenging medical and psychosocial problems. These problems and issues, in turn, may lead to daunting ethical dilemmas. Therefore, clinicians should be familiar with ethical dilemmas commonly encountered when caring for elderly patients. We review some of these dilemmas, including ensuring informed consent and confidentiality, determining decision-making capacity, promoting advance care planning and the use of advance directives, surrogate decision making, withdrawing and withholding interventions, using cardiopulmonary resuscitation and do-not-resuscitate orders, responding to requests for interventions, allocating health care resources, and recommending nursing home care. Ethical dilemmas may arise because of poor patient-clinician communication; therefore, we provide practical tips for effective communication. Nevertheless, even in the best circumstances, ethical dilemmas occur. We describe a case-based approach to ethical dilemmas used by the Mayo Clinic Ethics Consultation Service, which begins with a review of the medical indications, patient preferences, quality of life, and contextual features of a given case. This approach enables clinicians to identify and analyze the relevant facts of a case, define the ethical problem, and suggest a solution.

The aim of this study was to replicate a previous study on informed consent in dental practice, because of the low response-rate of that study. The present study assessed Dutch dentists' knowledge, their attitudes and self-efficacy towards the principle of informed consent, by means of a strongly shortened version of the questionnaire used in the original study. This questionnaire was sent to 384 Dutch dental practitioners; 60.2% of them responded. The results obtained in this study are highly comparable with the results of the original study, thereby increasing the confidence in the outcomes. Results of both studies indicate that dentists still have problems with some aspects of informed consent. Specifically, dentists' fear for legal procedures and the difficulty they have with informing immigrant patients warrants further attention.

This article addresses the ethical and legal issues surrounding the possibility of a "duty to recontact" patients concerning new genetic developments. The text examines the rationale of this concept, the conditions required for the creation of such a duty and who should be bound by it. While this "duty to recontact" has yet to be developed, the predictive familial dimensions of genetic information, however, may lead policy makers to favour such a duty. Professional organizations should begin to assess the implications of the genetic revolution on patient management and physicians' continuing education.

This article deals with nurses' ethical concerns raised by the consequences of changes in governmental and institutional policies on nursing practice and patient care. The aims of this project were to explore perspectives of registered nurses who provide or manage direct patient care on policies that affect nursing and patient care, and to provide input to policy makers for the development of more patient-centred policies. Four focus groups were conducted with a total of 36 registered nurse participants. The project team identified major themes that emerged in the analysis of transcripts of the focus group discussions. The four major themes were: effects of policy focused on cost containment, effects on quality of care, effects on patient education and access to needed services, and effects on nurses and nursing. The participants identified primarily negative effects of changes in national health policy and legislation that influence institutional policies on patient care and nursing practice. The effects of identified policy changes raised concerns about meeting nurses' ethical obligations to patients and families. Participants specified key points for consideration by legislators and other policy makers. They viewed nurses who are involved in direct patient care as a critical resource for legislators and other policy makers in the development of public and institutional policies that affect nursing and patient care.

The principle of respect for patient autonomy and the importance of informed consent are well established in the conduct of clinical research. However, in actual clinical practice, how one applies this concept is not always clear. The provocative results of a randomized trial examining "consolidation/maintenance" therapy in women with advanced ovarian cancer who achieved a clinically defined complete response to primary chemotherapy have raised difficult issues for clinicians and clinical investigators regarding their obligations to provide patients with information that may interfere with the conduct of ongoing or future research studies.

Respecting patient autonomy is a central part of the Royal College of Nursing's definition of nursing (RCN, 2003). Although autonomy is a fundamental ethical principle in health care, it stands alongside the principles of beneficence, non-maleficence and justice (Wilmot, 2003), and these principles may be interpreted differently by individuals and professional groups. In seeking to promote patient autonomy, it is therefore necessary for nurses to consider how these principles interlink, and to understand the potentially differing interpretations that they may encounter in practice. This article sets out to address these issues and suggests that facilitating patient autonomy includes engaging in debates which include uncertainties, considering the resource implications of patient autonomy and the responsibilities that patients have themselves. It also identifies that nurses who aim to promote patient autonomy and holistic decision making need to be able to facilitate discussion that may include questioning the dominant biomedical view of health. This will be problematic if nurses do not themselves feel empowered or autonomous.

Randomised clinical trials are widely accepted as the gold standard of clinical research. They seem to be the only means of conclusively establishing a relationship between an intervention and an observed outcome. However, randomisation by definition rules out individual choice of a treatment option. The justification of randomising is that the different options are in equipoise, and therefore no patient is at a disadvantage in the trial. There is concern whether equipoise, in a strict sense, is at all possible. This would require that there is no evidence as to the comparative efficacy of the treatments to be tested. This condition is in contrast to an honest null hypothesis. Several suggestions have been made to solve the tension of the equipoise requirement and are discussed in this paper. The second important condition for randomised clinical trials is to obtain informed consent from the patient. Valid consent requires that it is given voluntarily by a competent person who is adequately informed., (Copyright 2003 S. Karger GmbH, Freiburg)

Background: Several studies have explored the physicians' preferred actions when facing a reluctant or a demanding patient, but only a few studies have explored the physicians' justifying reasons., Objective: The aim of this study was to assess how GPs would act and how they would justify their choice., Method: A postal questionnaire with questions about preferred actions and justifying reasons was sent to a random sample of GPs in Slovenia (n = 160) and Sweden (n = 200) using four vignettes: (i). a healthy patient reluctant to quit smoking; (ii). a healthy patient demanding an X-ray; (iii). a pulmonary cancer patient reluctant to quit smoking; and (iv). a pulmonary cancer patient demanding immunotherapy., Results: The majority of GPs would bring up the question about smoking with the patients reluctant to quit. They justified their choice by referring to promotion of medical benefit and to protection from harm. Swedish GPs were less inclined to bring up smoking than were their Slovenian colleagues. Those who would not bring up the question referred to respect for self-determination and an enhanced relationship as their justifying reasons. With reference to the demanding patients, a minority of GPs would grant the healthy patient's request for an X-ray that was not medically motivated. The answers were similar with respect to the seriously ill patient requesting non-medically motivated immunotherapy. Slovenian GPs were much more inclined to grant the request than were their Swedish colleagues. Enhancing the relationship and respect for self-determination were the most important reasons for granting the demands. When the demands were denied, the GPs mostly referred to promotion of fair distribution of resources., Conclusion: Many of the GPs considered their patients' right to self-determination less important than other values, e.g. the obligation to promote medical benefit, to protect from harm, to distribute public resources fairly and to enhance the patient-physician relationship.

It is argued that a doctor has a duty to provide information about reasonably available complementary and alternative medicine treatments where that information would be material to the particular patient or the hypothetical prudent patient. Given the vast array of such treatments available, doctors will want to rely on evidence-based medicine problem-solving skills to ascertain those treatments that are safe and efficacious. While the risk of litigation for failure to provide such information is probably low at this time, given the high rate of patient self-prescribing, it is necessary for a doctor to open a dialogue with a patient about complementary and alternative medicine to address safety concerns. In addition, it is important to facilitate access to the best of conventional and complementary treatments to ensure better health outcomes for the patient.

Doctors have an ethical and legal duty to respect patient confidentiality. We consider the basis for this duty, looking particularly at the meaning and value of autonomy in health care. Enabling patients to decide how information about them is disclosed is an important element in autonomy and helps patients engage as active partners in their care. Good quality data is, however, essential for research, education, public health monitoring, and for many other activities essential to provision of health care. We discuss whether it is necessary to choose between individual rights and the wider public interest and conclude that this should only rarely be necessary. The paper makes some recommendations on practical steps which could help ensure that good quality information is available for work which benefits society and the public health, while still enabling patients' autonomy to be respected.

Because genes and alterations within them determine the identity, characteristics, and inheritance of every individual, the application of genetic science to humans has long been surrounded by apprehension, controversy, and real or perceived potential for abuse. Crude eugenics practices of the past now find a theoretical rebirth and transformation through the use of modern molecular genetic technologies for mutation detection, predictive and prenatal diagnosis, and, ultimately, gene replacement. The advent of oligonucleotide microarray analysis, in which hundreds or thousands of genes and mutations can be tested in parallel, offers tremendous promise for more accurate, sensitive, and efficient genetic testing. At the same time, however, this powerful technology dramatically increases the number and scope of ethical concerns accompanying each individual test request. This article considers the evolution and implications of these concerns, from the initial ordering of a microarray test by the physician to such issues as informed consent, privacy, confidentiality, clinical utility, discrimination, stigmatization, ethnic and population impact, and reimbursement.

Many accounts of informed consent in medical ethics claim that it is valuable because it supports individual autonomy. Unfortunately there are many distinct conceptions of individual autonomy, and their ethical importance varies. A better reason for taking informed consent seriously is that it provides assurance that patients and others are neither deceived nor coerced. Present debates about the relative importance of generic and specific consent (particularly in the use of human tissues for research and in secondary studies) do not address this issue squarely. Consent is a propositional attitude, so intransitive: complete, wholly specific consent is an illusion. Since the point of consent procedures is to limit deception and coercion, they should be designed to give patients and others control over the amount of information they receive and opportunity to rescind consent already given.

An important aspect of health professional's duty of care is to advise patients of the available options of treatment so that the patient can choose the form of treatment that suits her or his requirements. As CAM becomes more evidence-based and accepted, medical doctors need to consider the extent to which they should provide patients with information about those types of treatments. If a CAM treatment option is evidence-based, there is a strong argument that medical doctors should advise of this option for treatment to satisfy their duty. CAM practitioners should also provide details of options for treatment within their own modality but are not obliged to advise of medical options.

Objectives: In May 2001, we surveyed French rheumatologists to determine how they inform their patients about serious side effects of drugs., Results: Of the 600 rheumatologists invited to participate in the study, 341 completed and returned the questionnaire. Most respondents believed that full information on patients would become the rule (mean, 62.1 +/- 28.3, the items being scored on a 100-point scale where 0 was "not at all" and 100 "absolutely"). The answer to this item varied little across age groups. Respondents felt that patient information fell primarily on the physician, (78 +/- 23), followed by pharmaceutical companies (64 +/- 32) and pharmacists (46 +/- 33). The respondents believed that full information of patients about side effects would primarily benefit physicians (51 +/- 32), followed by pharmaceutical companies (43 +/- 30) and patients (38 +/- 28). The reaction of patients to information on drug-related risks was described as "always favorable" by 2% of the respondents and as "fairly often favorable" by 55%. Among respondents, 9% always gave information on serious side effects, 66% fairly often, and 4% never; 2% always communicated information on the approximate frequency of serious adverse events, 21% fairly often, and 33% never. Similarly, 3% of the respondents always warned their patients of lethal risks, 11% fairly often, and 44% never. When evaluated on a 100-point scale (0, not at all knowledgeable; 100, very knowledgeable), knowledge of serious side effects of drugs for musculoskeletal conditions was 73 +/- 23, whereas knowledge of the frequency of these effects was only 52 +/- 22. Eight percent of the respondents always recommended that patients read the package insert, 27% fairly often, and 32% never. Conversely, the possible adverse effects of not taking the treatment were always specified by 21% of the respondents and fairly often by 88%.

The Human Genome project will result in a rapid increase in information about genetically based disease and possible genetically based therapies and cures. In light of this, radical changes in medical education may be necessary. Patients rely on physicians for medical advice about genetic ills and treatments and yet there is mounting evidence that physicians are not well informed about genetics and indeed that they are misinformed. There is also evidence that informed consent is not always honored in the context of genetic testing and indeed that coercion to test and even to act on test information is a practice. Misinformation and the mishandling of genetic information can cause physical, psychological and social harm to persons and intentional and non-intentional violations of informed consent, confidentiality, and privacy are causes for alarm. It is an ethical imperative that genetic literacy and education for physicians be fully and quickly addressed.

Background: A number of organisations have begun to provide specific tools for searching, rating, and grading this information, while others have set up codes of conduct by which site providers can attest to their high quality services. The aim of such tools is to assist individuals to sift through the mountains of information available so as to be better able to discern valid and reliable messages from those which are misleading or inaccurate., Objective: Recognising that European citizens are avid consumers of health related information on the internet and recognising that they are already using the types of rating system described above, the European Council at Feira on June 19-20 2000 supported an initiative within eEurope 2002 to develop a core set of Quality Criteria for Health Related Websites. The specific aim was to draw up a commonly agreed set of simple quality criteria on which Member States, as well as public and private bodies, may draw in the development of quality initiatives for health related websites. These criteria should be applied in addition to relevant Community law., Methods: A meeting was held during 2001 which drew together key players from Government departments, International Organisations, non-governmental organisations and industry, to explore current practices and experiments in this field. Some sixty invited participants from all the Member States, Norway, Switzerland, and the United States of America took part in the meeting of June 7-8, 2001: they included delegates from industrial, medical, and patient interest groups, delegates from Member States' governments, and key invited speakers from the field of health information ethics. These individuals, and many others, also took part in the web-based consultation which was open from august to November 2001., Results: The broad headings for quality criteria identified include Transparency and Honesty, Authority, Privacy and data protection, Updating of information, Accountability, Responsible partnering, Editorial policy, Accessibility, the latter includes attention to guidelines on physical accessibility as well as general findability, searchability, readability, usability, etc. A metadata labelling system may be used to make health data more findable. Such a system may also be used in conjunction with quality criteria to give higher ranking by search engines to those sites or pages labelled as complying with defined quality criteria., Conclusions: The set of quality criteria is based upon a broad consensus among specialists in this field, health authorities, and prospective users. It is now to be expected that national and regional health authorities, relevant professional associations, and private medical website owners will 1) implement the Quality Criteria for Health Related Websites in a manner appropriate to their website and consumers; 2) develop information campaigns to educate site developers and citizens about minimum quality standards for health related websites; 3) draw on the wide range of health information offered across the European Union and localise such information for the benefit of citizens (translation and cultural adaptation); 4) exchange information and experience at European level about how quality standards are being implemented.

The education provided to women patients has been used historically to deliver messages of social and medical control. I suggest ethical standards of practice to tilt the balance toward use of education to serve women's perceived needs. Specific steps include standards and guidelines that specifically address appropriate gender differences in educational messages, regular elicitation from women of educational needs and satisfaction with educational services, and research that specifically tests the impact of patient education services on women and on men. More broadly, patient education must be legitimated as an essential service for which providers and institutions are accountable, and the predominately nonphysician providers who deliver it must be empowered to challenge current practice. Current work on health care as a gendered system suggests that patient education practice can rid itself of only some of the gender bias that exists.

Objectives: To examine ways in which medicines information pharmacists approach ethical dilemmas encountered in information supply, to appreciate the factors affecting any observed variation in responses, and to identify and training deficits among medicines information (MI) pharmacists in this area., Method: A questionnaire was circulated to all medicines information pharmacists working in the hospital pharmacy service in the United Kingdom. The survey presented ten realistic scenarios involving requests for information on a variety of topics from 'lay' callers., Main Outcome Measures: Respondents were asked to identify any perceived ethical dilemmas presented by the scenarios and to indicate their preferred replies. Details on training given or received in this area were also requested., Results: The overall response rate was 151 of 286 questionnaires mailed (52.8%), representing 137 discrete DI centres throughout the UK. Postgraduate clinical qualifications were possessed by 71% of respondents. Just 32 (21.2%) indicated that they gave training on ethical issues surrounding information supply while 57 (37.1%) said they had received such training. Over half (54.3%) had neither received nor delivered training on ethical issues. Of the 32 who said they gave training, 21 had received training themselves. Only 4 (2.6%) said they had a protocol in place for dealing with enquiries from members of the public., Conclusions: There was considerable variation in how respondents thought the scenarios might be resolved, emphasising the varying levels of appreciation of the issues and lack of a uniform approach to management. An interesting dichotomy emerged between liberal and conservative approaches. Liberal pharmacists clearly believed that all MI data is in the public domain and should be produced and evaluated on request because patients have a "right" to it. The conservative pharmacists had a more protective attitude toward the patient and believed that patients should not be given information by MI pharmacists directly; rather that it should be channelled through the patient's doctor. These two approaches are not incompatible, and may be adopted by the same pharmacist at different times. From their observations, the authors propose a basis of an ethical guideline for MI pharmacists.

Patient counseling is a cornerstone of ethical pharmacy practice and high quality pharmaceutical care. Counseling promotes patient compliance with prescription regimens and prevents dangerous drug interactions and medication errors. Counseling also promotes informed consent and protects pharmacists against legal risks. However, economic, social, and technological changes in pharmacy practice often force community pharmacists to choose between their professional obligations to counsel patients and business objectives. State and federal legislatures have enacted laws that require pharmacists to counsel patients, but these laws have had mixed results. This essay argues that community pharmacy's patient counseling conundrum can be solved through additional moral education persuasion, not through additional legal mandates.

Learn your role in informed consent and explore the gray areas, including circumstances when consent may be valid even if the patient wasn't fully informed.