This Handbook offers much-needed insights into the ethics of primary healthcare. Topics range from the issues arising in primary care interactions, to working with different sources of vulnerability among patients, from contexts connected with teaching and learning, to issues in relation to justice and resources.

Whether practiced by ethics committees or clinical ethicists, medical ethics enjoys a solid foundation in acute care hospitals. However, medical ethics fails to have a strong presence in the primary care setting. Recently, some ethicists have argued that the reason for this disparity between ethics in the acute and primary care setting is that primary care ethics is distinct from acute care ethics: the failure to translate (...) ethics to the primary care setting stems from the incorrect belief that acute care ethics can be applied to the primary care setting. In this paper, I argue that primary care ethics and acute care ethics are species of the same ethical genus, and that the ethical differences are not ones of kind but of circumstance. I do this by appealing to the role obligations that underlie acute care and primary care clinicians’ medical ethical obligations and the shared institutions that ground those obligations. (shrink)

This book is a comprehensive and unique text and reference in medical ethics. By far the most inclusive set of primary documents and articles in the field ever published, it contains over 100 selections. Virtually all pieces appear in their entirety, and a significant number would be difficult to obtain elsewhere. The volume draws upon the literature of history, medicine, philosophical and religious ethics, economics, and sociology. A wide range of topics and issues are covered, such as (...) law and medicine, truth-telling by the physician, research, population policy, genetics, abortion, dying, and individual rights in medical care. The selections span the centuries, beginning with material from the works of Hippocrates, continuing through Thomas Percival, John Stuart Mill, and Claude Bernard, down to modern commentators like Henry K. Beecher, Walsh McDermott, David L. Bazelon, Paul Freund, H. L. A. Hart, John Rawls, Paul Ramsey, Richard McCormick, Rashi Fein, and Bernard Barber. The text has eight major divisions, beginning with sections on the ethical dimensions of the physician-patient relationship in history; the moral bases of medical ethics; and regulation, compulsion, and protection of the consumer in clinical medicine and public health. Each of these sections includes key essays that appear for the first time. All of the book's major divisions contain primary documents: codes such as the Hippocratic Oath, Medieval Law for the Regulation of Medicine, and the first as well as the most recent code of the American Medical Association; court decisions, including those on Karen Quinlan and on abortion in the United States and West Germany; government documents such as the statement of the National Commission on the Protection of Human Subjects, the Tuskegee Syphilis Report, the British Parliamentary debate on euthanasia, and the Council of Europe on rights of the sick and dying; and various published guidelines such as the Harvard Medical School brain death criteria, the American Hospital Association on patient's rights, and Pope Pius XII on the prolongation of life. Cases that illustrate moral dilemmas are provided for discussion purposes. Each section is preceded by a succinct editor's introduction. The documents and essays are of practical value for practitioners and students in medicine, law, ethics, and counselling, and for individual patients and groups concerned with medical care. Through encompassing divergent viewpoints, the essays and primary documents were selected to encourage humane practices and deepen understanding of the multiple traditions that shaped and do shape the development of medicine. (shrink)

In bioethics and health policy, we often discuss the appropriate boundaries of public funding; how the interface of public and private purchasers and providers should be organized and regulated receives less attention. In this paper, I discuss ethical and regulatory issues raised at this interface by three medical practice models in which physicians provide insured services while requiring or requesting that patients pay for services or for the non-insured services of the physicians themselves or their associates. This choice for such (...) practice models is different from the decision to design an insurance plan to include or exclude user fees, co-payments and deductibles. I analyze the issues raised with regards to familiar health care values of equity and efficiency, while highlighting additional concerns about fair terms of access, provider integrity, and fair competition. I then analyze the common Canadian regulatory response to block fee models, considering their extension to wellness clinics, with regards to fiduciary standards governing the physician–patient relationship and the role of informed consent. I close by highlighting briefly issues that are of common concern across different fundamental normative frameworks for health policy. (shrink)

This article defends an ethics of care approach to global justice, which begins with an empirically informed account of injustices resulting from the workings and effects of contemporary neo-liberalism and hegemonic masculinities. Dominant distributive approaches to global justice see the unequal distribution of resources or ?primary goods? as the basic source of injustice. Crucially, however, most of these liberal theories do not challenge the basic structural and ideational ?frames? that govern the global political economy. Instead, they seek (...) to ?correct? unjust patterns of distribution according to an ideal theory. Subjects in these theories are generally understood as abstract, autonomous and impartial; this is in contrast to an ethics of care, which starts with an ontology of the subject as embodied, vulnerable and relational. The first part of this article explores the role and nature of theory in relation to the task of considering injustice on a global scale and offers a critique of the narrow focus in traditional theories of justice on the distribution of ?primary goods?. The second part considers the effects of neo-liberal globalization and hegemonic masculinities on global working families in order to illustrate the relationship between care and global justice. The final section sketches out a care-ethics approach to global injustice, focusing on three features: first, care as a relational approach; second, the focus in care ethics on intersecting structures of injustice; and third, care as a multi-scalar approach to global injustice. (shrink)

The development of ethics case consultation over the past 30 years, initially in North America and recently in Western Europe, has primarily taken place in the secondary or tertiary healthcare settings. The predominant model for ethics consultation, in some countries overwhelmingly so, is a hospital-based clinical ethics committee. In the United States, accreditation boards suggest the ethics committee model as a way of meeting the ethics component of the accreditation requirement for payment by Health Maintenance (...) Organizations, and in some European countries, there are legislatory requirements or government recommendations for hospitals to have clinical ethics committees. There is no corresponding pressure for primary care services to have ethics committees or ethics consultants to advise clinicians, patients, and families on the difficult ethical decisions that arise in clinical practice. (shrink)

Primary care presents distressful moral problems for nurse practitioners (NPs) who report frustration, powerlessness, changing jobs and leaving advanced practice. The purpose of this grounded theory study was to describe the process NPs use to manage moral problems common to primary care. Twenty-three NPs were interviewed, commenting on hypothetical situations depicting ethical issues common to primary care. Coding was conducted using a constant comparative method. A theory of maintaining moral integrity emerged consisting of the (...) phases of encountering conflict, drawing a line, finding a way without crossing the line, and evaluating actions. The NPs varied in their awareness and the discord encountered in conflict, and in clarity, flexibility and justification of the line drawn. A critical juncture occurred when NPs evaluated how well integrity had been maintained. Some experienced no distress while others experienced self-doubt, regret, outrage and frustration at external constraints, and attempted to reconcile through avoiding, convincing themselves, and compensating. (shrink)

This volume moves beyond ethics as problem-solving or ethics as etiquette to offer a look at ethics in primary care—as opposed to life-or-death—medical care. Professional Ethics and Primary Care Medicine deals with the ethics of routine, day-to-day encounters between doctors and patients. It probes beneath the hard decisions to look at the moral frameworks, habits of thought, and customs of practice that underlie choices. Harmon Smith and Larry Churchill argue that (...) primary care, far from being merely a setting for the rendering of care, provides a new understanding of both physician and patient, and thereby offers a fresh basis for medical ethics. (shrink)

Would primary care services benefit from the aid of a clinical ethics committee (CEC)? The implementation of CECs in primary care in four Norwegian municipalities was supported and their activities followed for 2.5 years. In this study, the CECs’ structure and activities are described, with special emphasis on what characterizes the cases they have discussed. In total, the four CECs discussed 54 cases from primary care services, with the four most common topics being (...) patient autonomy, competence and coercion; professionalism; cooperation and disagreement with next of kin; and priority setting, resource use and quality. Nursing homes and home care were the primary care services most often involved. Next of kin were present in 10 case deliberations, whereas patients were never present. The investigation indicates that it might be feasible for new CECs to attain a high level of activity including case deliberations within the time frame. It also confirms that significant, characteristic and complex moral problems arise in primary care services. (shrink)

Evidence based medicine has had an increasing impact on primary care over the last few years. In the UK it has influenced the development of guidelines and quality standards for clinical practice and the allocation of resources for drug treatments and other interventions. It has informed the thinking around patient involvement in decision making with the concept of evidence based patient choice. There are, however, concerns among primary care clinicians that evidence based medicine is not always (...) relevant to primary care and that undue emphasis placed on it can lead to conflict with a clinician’s duty of care and respect for patient autonomy. In this paper we consider the impact of evidence based medicine on primary care, and the ethical implications of its increasing prominence for clinicians and managers in primary care. (shrink)

Implementing The new NHS and the 1997 NHS (Primary Care) Act will gradually extend cash-limiting into primary health care, especially general practice. UK policy-makers have avoided providing clear, unambivalent direction about how to 'ration' NHS resources. The 'Child B' case became an epitome of public debate about NHS rationing. Among many other decision-making processes which occurred, Cambridge and Huntingdon Health Authority applied an ethical code to this rationing decision. Using new data this paper analyses the rationing (...) criteria NHS managers and clinicians used at local level in the Child B case; and the organisational structures which confronted them with such decisions. Primary Care Groups are likely to confront similar rationing decisions in respect of 'gate-kept' NHS services. However, such rationing processes are not so easily transposed to open-access services such as general practice. NHS rationing decisions, especially in PCGs, will require a much more specific ethical code than hitherto used. (shrink)

Many countries project that they will have difficulty to meet their demand for primary care based on an inadequate supply of primary care doctors. There are many reasons for this, and they tend to vary by country. The policy options available to these countries are to increase the number of local primary care doctors, recruit doctors from other countries, ration primary care, shift more primary care to specialists, or authorize other (...) disciplines to provide primary care. This article examines lessons learned in the United States over the past 50 years and proposes that expanding the use of nurse practitioners is the best solution when measured by feasibility, costs, ethics, and scope of the care delivered. Using nurse practitioners trained in country meets the World Health Organization global code of practice regarding the international recruitment of health personnel. (shrink)

The primary objective of The Health Care Ethics Con sultant is to focus attention on an immediate practical problem: the role and responsibilities, the education and training, and the certification and accreditation of health care ethics consultants. The principal questions addressed in this book include: Who should be considered health care ethics consultants? Whom should they advise? What should be their responsi bilities and what kind of training should they have? Should there be (...) some kind of accreditation or certification program to ensure that those who call themselves ethics consultants are in fact qualified to advise, consult, research, and write in health care ethics? The distinguished authors ofthese articles are persons with diverse backgrounds, interests, presumptions, and val ues. Not surprisingly, therefore, diverse responses have emerged to the questions posed. Though the book's chapters are individually authored, they are informed by the group discussions that went on during active workshop sessions, and by knowledge of the contributions of others. All of the chapters meaningfully represent their consensus. This is not to say that there were no disagreements regarding specific details, but rather that there were no fundamental objections on the book's basic content among a panel of authors who share basic premises regarding the role, responsibilities, education, and certifica tion of health care ethics consultants. (shrink)

Few residency training programmes explicitly require substantive exposure to issues in medical ethics and fewer still have a formal curriculum in this area. Traditional undergraduate medical ethics courses teach preclinical students to identify ethical issues and analyse them at a theoretical level. Residency training, however, is the ideal time to establish the critical behavioural link which makes ethics truly useful in clinical medicine. The General Internal Medicine Residency Training Program at Rhode Island Hospital has developed an integrated, (...) three-year curriculum with the goals of helping residents to perceive ethical issues in clinical practice, to utilise basic philosophical principles in resolving ethical dilemmas and to communicate these issues clearly and sensitively to patients. The curriculum has been well received by residents and has had a hospital-wide impact. We believe that training residents in medical ethics and communication skills is an effective approach to developing physicians' humane qualities. (shrink)

Background: By providing healthcare to adolescents, a major opportunity is created to help them cope with the challenges in their lives, develop healthy behaviour and become responsible healthcare consumers. Confidentiality is a major issue in adolescent healthcare, and its perceived absence may be the main barrier to an adolescent seeking medical care. Little is known, however, about confidentiality for adolescents in primary care practices in Spain.Objective: To ascertain the attitudes of Spanish family doctors towards the right of (...) adolescents to confidentiality in different healthcare situations and in the prescription of treatment.Method: A descriptive postal questionnaire was self-administered by family doctors.Results: Parents of patients under 18 years are always informed by 18.5% of family doctors, whereas parents of those under 16 years are informed by 38.8% of doctors. The patients are warned of this likelihood by 79.3% of doctors. The proportion of doctors supporting confidentiality for adolescents increases with the age and maturity of the patients, whereas workload and previous training has a negative effect.Conclusions: Spanish laws on adolescent healthcare are not reflected by the paternalistic attitude that Spanish primary care doctors have towards their adolescent patients. Doctors need to be provided with up-to-date and clinically relevant explanations on contemporary legal positions. In primary care, more attention should be paid to adolescents’ rights to information, privacy and confidentiality. Doctors should be more aware of the need to encourage communication between teenagers and their parents, while also safeguarding their patients’ rights to confidential care. (shrink)

The ethics of care and Confucian care ethics are both characterised by relations-based moral reasoning and decision-making. Acknowledging this similarity, this article compares and contrasts these two ethics, highlighting Western and Eastern moral concerns. One of the main differences between the two ethical theories is their different focus on vulnerability and inequality as factors in achieving equality in the ethics of care; another is the reciprocity, rather than equality, dimension in Confucian ethics. (...) Both theories enshrine the view that the characteristics of care offer scope for developing the capacity for judgement. However, a fundamental difference is revealed when considering that Confucian ethics emphasises care as a virtue in the cultivation of one's moral agency, whereas the ethics of care sees care as both a disposition and practice, and the caring relationship to be a primary means of moral evaluation. For the care ethicists, the practice of care embraces communicative morality, within fluid, dynamic interpersonal relationships - in sharp contrast to Confucian care practices, which are constructed within formal standards and fixed, role-based relationships. (shrink)

Health care depends on people. It is the health workforce — doctors, nurses, pharmacists, lab technicians, and nursing assistants, to mention a few — that, in large measure, determine the quality and effectiveness of any health enterprise. The nature of the health workforce was integral to the health care reform debates of the early 1990s and will surely be central in proposals to improve the quality, accessibility, and cost of U.S. health care in the future. Therefore, as (...) we enter a new period of health reform deliberations and as we face the inevitability of an aging population, it is important to consider the problems and potential remediation necessary for the health workforce of the future. This article focuses particularly on physicians and nurses while recognizing the importance and frequently parallel concerns that arise across all health care disciplines. Understanding how the composition, capacity, and activities of a health care workforce must change as part of health reform requires an understanding of the context in which health professionals practice. What are the factors that govern health care today, and what are their impact on the health workforce? (shrink)

A combination of “environmental factors” in the U.S. has led to an increased demand for health care professionals. However, there has been a significant decrease in the number of U.S. medical graduates selecting careers in family medicine and general internal medicine, thus driving demand for international medical graduates. At the heart of our national workforce policy needs to be good domestic and foreign policies, such as self-sufficiency approaches that include strategies to incentivize rural and underserved practice for U.S. medical (...) graduates. (shrink)

Medical cannabis is widely available in the USA and legalisation is likely to expand. Despite the increased accessibility and use of medical cannabis, physicians have significant knowledge gaps regarding evidence of clinical benefits and potential harms. We argue that primary care providers have an ethical obligation to develop competency to provide cannabis to appropriate patients. Furthermore, specific ethical considerations should guide the recommendation of medical cannabis. In many cases, these ethical considerations are extensions of well-established principles of beneficence (...) and nonmaleficence, which indicate that providers should recommend cannabis only for conditions that have the strongest evidence base. Additionally, the contested status of cannabis in American culture raises specific issues related to shared decision-making and patient education, as well as continuing clinical education. (shrink)

Initiatives which offer support to primary care practitioners interested in research have become widespread in the UK. There has been little debate, however, about the ethical issues involved in such interactions with practitioners. Established codes of practice and analyses of the institutional and strategic contexts have been used to inform this discussion. The paper concludes with a recommendation that more explicit quasi-contractual relationships should be negotiated between those offering and those seeking help.

In this article, we examine the inter-relationship between moral theory and the unpredictable and complex world of primary health care, where the values of patient and doctor, or groups of patients and doctors, may often clash. We introduce complexity science and its relevance to primary care; going on to explore how it can assist in understanding ethical decision making, as well as considering implications for clinical practice. Throughout the article, we showcase aspects and key concepts using (...) examples and a case study developed from our day-to-day experience working as clinical practitioners in primary care. (shrink)

We report key themes arising from a postgraduate workshop organized by the King's Interdisciplinary Discussion Society (KIDS) held in April 2011. KIDS believe that health is a phenomenon that transcends disciplinary boundaries, and therefore issues relating to health care and medical ethics are best addressed with an interdisciplinary approach. The workshop, entitled ‘Everyday Ethics and Primary Healthcare’, included poster presentations and oral presentations from participants from a range of disciplines and occupational backgrounds which highlighted the challenges (...) faced by primary health-care workers. Three common themes emerged: the impersonal and cumbersome work environment that can result from the encroachment of rationalizing tools; the tension between ‘ethical practice as an ongoing sensibility’ and ‘ethical practice as “box-ticking”’; and the contested nature of what constitutes ‘health’. Participants felt that the interdisciplinary perspective was helpful in elucidating the various ethical issues arising in primary health care. (shrink)

In all systems of health care there are certain essential levels of care and service. These take the form of self-care within the family unit; primary professional care by general medical nursing or social practitioners within a local neighbourhood; general specialist care in a district and super-specialist care in a region. Each of these has its own special roles and responsibilities and each is considered in this paper.

This book is a resource for providers and students, integrating germane basic science information with clinical-medicine insights. The goal is to improve primary-care outpatient interactions for physicians, APRNs, and PAs. It is unique, integrating germane basic-science information with clinical-medicine. Unlike other resources that introduce these concepts more distinctly, this book bridges the gap and provides insights for providers and students. Also, there are succinct, yet comprehensive, presentations on managing the more common out-patient problems. The book is designed for (...) primary care providers and students, e.g., physicians, APRNs, and PAs, who desire to improve their patient-education, diagnostic, and treatment skills. The PEARLS are instruments to embellish and emphasize important concepts. The focus of the book is to improve outpatient medicine delivery, and better informed and confident providers are keys to the process. (shrink)

Nel Noddings identifies four core problems with the primary education system in the United States. First, there is no established caring relationship between educational authorities and students. Second, there is no continuity in student-teacher relationships. Third, Common Core neglects deep existential questions in its educational approach. Fourth, Common Core does not emphasize connections between the disciplines to each other or to real-life problems. The four problems with the primary education system identified by Noddings contribute to the fake news (...) problem in the following way: The first two problems sow the seeds for future distrust of expertise; The third problem deadens students’ critical thinking skills and curiosity for knowledge; and the fourth problem plays into the structure of how fake news is designed and consumed. I will argue that Noddings’ education reform proposal is the ideal solution for addressing these problems. (shrink)

In this mixed methods study we identify and assess ethical and pragmatic issues and dilemmas surrounding e-health technologies in the context of primary care, including what is already in the literature. We describe how primary healthcare professionals can access reliable and accurate data, improve the quality of care for patients, and lower costs while following institutional guidelines to protect patients. Using qualitative and quantitative methodologies we identify several underlying ethical and pragmatic burdens and benefits of e-health (...) technologies. The 41 study participants reported more burdens than benefits, and were generally ambivalent about their level of satisfaction with their institutions’ ehealth technologies, their general knowledge about the technologies, and whether e-health can improve team-based communication and collaboration. Participants provided recommendations to improve e-health technologies in primary care settings. (shrink)

Ethics support in primary health care has been sparser than in hospitals, the need for ethics support is probably no less. We have, however, limited knowledge about how to develop ethics support that responds to primary health-care workers’ needs. In this article, we present a survey with a mixture of closed- and open-ended questions concerning: How frequent and how distressed various types of ethical challenges make the primary health-care workers feel, how (...) important they think it is to deal with these challenges better and what kind of ethics support they want. Five primary health-care institutions participated. Ethical challenges seem to be prominent and common. Most frequently, the participants experienced ethical challenges related to scarce resources and lack of knowledge and skills. Furthermore, ethical challenges related to communication and decision making were common. The participants welcomed ethics support responding to their challenges and being integrated in their daily practices. (shrink)

The practice around informed consent in clinical medicine is both inconsistent and inadequate. Indeed, in busy, contemporary health care settings, getting informed consent looks little like the formal process developed over the past sixty years and presented in medical textbooks, journal articles, and academic lectures. In this article, members of the Society of Teachers of Family Medicine (STFM) Collaborative on Ethics and Humanities review the conventional process of informed consent and its limitations, explore complementary and alternative approaches to (...) doctor‐patient interactions, and propose a new model of consent that integrates these approaches with each other and with clinical practice. The model assigns medical interventions to a consent continuum defined by the discrete categories of traditional informed consent, assent, and nondissent. Narrative descriptions and clinical exemplars are offered for each category. The authors invite colleagues from other disciplines and from the academic ethics community to provide feedback and commentary. (shrink)

Primary health care is characterised by timely and appropriate health care access, delivered continuously over time to a specific population, providing a comprehensive service, with coordination of care for those that need it. Practitioners deal with a multiplicity of clinical issues within longitudinal relationships, embedded in the context of families and communities. We propose that these aspects of primary care have a bearing on how matters of decision making are considered and implemented. Further, the (...) standard account of autonomous decision making is not wholly adequate when applied to clinician–patient encounters in primary care. We add considerations of the impact of illness (however defined) and self-identity as also relevant to a more measured and full account. The context of primary care is quite different from that of secondary care. Although there are generalists who work in hospitals, we argue that this aspect and the other attributes of primary care generate special ethical considerations. One of these is how autonomy, or more fully, how respect for the principle of autonomy is considered and operationalised in community practice. In this study, we describe some theoretical aspects of autonomy and seek to apply, and challenge, these aspects in the context of clinical work in primary care. In doing so we will review the descriptors of primary care: why in essence it is different from other contexts of clinical work. (shrink)

Objectives -/- Surveys in various countries suggest 17% to 80% of doctors prescribe ‘placebos’ in routine practice, but prevalence of placebo use in UK primary care is unknown. Methods -/- We administered a web-based questionnaire to a representative sample of UK general practitioners. Following surveys conducted in other countries we divided placebos into ‘pure’ and ‘impure’. ‘Impure’ placebos are interventions with clear efficacy for certain conditions but are prescribed for ailments where their efficacy is unknown, such as antibiotics (...) for suspected viral infections. ‘Pure’ placebos are interventions such as sugar pills or saline injections without direct pharmacologically active ingredients for the condition being treated. We initiated the survey in April 2012. Two reminders were sent and electronic data collection closed after 4 weeks. Results -/- We surveyed 1715 general practitioners and 783 (46%) completed our questionnaire. Our respondents were similar to those of all registered UK doctors suggesting our results are generalizable. 12% (95% CI 10 to 15) of respondents used pure placebos while 97% (95% CI 96 to 98) used impure placebos at least once in their career. 1% of respondents used pure placebos, and 77% (95% CI 74 to 79) used impure placebos at least once per week. Most (66% for pure, 84% for impure) respondents stated placebos were ethical in some circumstances. Conclusion and implications -/- Placebo use is common in primary care but questions remain about their benefits, harms, costs, and whether they can be delivered ethically. Further research is required to investigate ethically acceptable and cost-effective placebo interventions. (shrink)

This paper discusses two interrelated concepts: (1) the ethics of planned social change and (2) primary health care. It takes the World Health Organization’s definition of primary health care as a point of departure to examine four identified potential areas where ethical dilemmas may occur. In addition, questions are raised about nursing education, as well as about the class and status differences between nurses and patients and communities. It takes the position that our first task (...) is to encourage more discussion and examination of ethical issues in the planned social change of primary health care. (shrink)

Specialists and primary care physicians play an integral role in treating the twin epidemics of pain and addiction. But inadequate access to specialists causes much of the treatment burden to fall on primary physicians. This article chronicles the differences between treatment contexts for both pain and addiction — in the specialty and primary care contexts — and derives a series of reforms that would empower primary care physicians and better leverage specialists.

While the ethic of care has generally been regarded as an appropriate attitude for nurses, it has not received equal attention as a mode of ethical problem solving. The primary nursing model is exp...

Objectives: Recent legislative changes within the United Kingdom have stimulated professional debate about access to patient data within research. However, there is currently little awareness of public views about such research. The authors sought to explore attitudes of the public, and their lay representatives, towards the use of primary care medical record data for research when patient consent was not being sought.Methods: 49 members of the public and four non-medical members of local community health councils in South Wales, (...) UK gave their views on the value and acceptability of three current research scenarios, each describing access to data without patient consent.Results: Among focus group participants, awareness of research in primary care was low, and the appropriateness of general practitioners as researchers was questioned. There was general support for research but also concerns expressed about data collection without consent. These included lack of respect and patient control over the process. Unauthorised access to data by external agencies was a common fear. Current data collection practices, including population based disease registers elicited much anxiety. The key informants were equally critical of the scenarios and generally less accepting.Conclusions: This exploratory study has highlighted a number of areas of public concern when medical records are accessed for research without patient consent. Public acceptability regarding the use of medical records in research cannot simply be assumed. Further work is required to determine how widespread such views are and to inform those advising on confidentiality issues. (shrink)

The point of departure is the empirical research by Marwijk, Haverkate, Van Royen and The. Starting from qualitative interviews, the act of euthanasia seems to be for the physician problematic and even traumatic, also in countries where euthanasia is a legal option. This emotional contrast-experience is an important locus for the ethical reflection. I will discuss one topic of the conclusion of the research: what is the place, meaning and limit of the moral integrity of the practitioner? In the act (...) of euthanasia, a relation of many years based on trust is often presupposed by the physician in order to legitimate morally his involvement in the act of euthanasia. At the same time, physicians experience an inconsistent relation between their acting and their personal emotional and moral experience. The legal possibility to refuse the involvement in the euthanasia, doesn’t take away the ethical unrest and physicians can experience to leave their patients to fend for themselves. Can the responsibility and the loyalty towards the patient implicate that one passes over his own moral integrity? A one-sided interpretation of the ethics of Levinas could suggest a positive answer to this question. A choice for the concrete goodness happens in the face-to-face relation with the other. The other’s interest and not the own existing values are decisive. This could lead to the suggestion of an absolute presence for the other. The own moral integrity is subordinated towards the ethical responsibility for the other. To this kind of reasoning, we put two questions: Every form of responsibility presupposes a moral integrity. The autonomy and the conscience of the physician is presupposed for taking up the responsibility towards the patient. It cannot be annihilated by the faithfulness and responsibility. The physician is not only responsible for the patient who is asking euthanasia, but also for his other patients. The act of euthanasia has consequences for his moral attitudes towards the third parties. The problem will be elaborated in a discussion with the concept of responsibility as developed by Emmanuel Levinas and Cathérine Chalier. The argument is based on a critical-philosophical reading of some biblical texts. The conclusion is relevant for the evaluation of the moral integrity of the physician as well as for the application of Levinas’ concept of responsibility in the field of biomedical ethics. (shrink)

This paper explores ethical concerns arising in healthcare integration. We argue that integration is necessary imperative for meeting contemporary and future healthcare challenges, a far stronger evidence base for the conditions of its effectiveness is required. In particular, given the increasing emphasis at the policy level for the entire healthcare infrastructure to become better integrated, our analysis of the ethical challenges that follow from the logic of integration itself is timely and important and has hitherto received insufficient attention. We evaluated (...) an educational intervention which aims to improve child health outcomes by making transitions between primary to secondary care more efficient, ensuring children and parents are better supported throughout. The programme provided skills for trainee paediatricians and general practitioners in co-designing integrated clinical services. The key ethical challenges of integrated care that arose from a clinical perspective are: professional identity and autonomy in an integrated working environment; the concomitant extent of professional responsibility in such an environment; and the urgent need for more evidence to be produced on which strategies for integrating at scale can be based. From our analysis we suggest a tentative way forward, viewed from a normative position broadly situated at the intersection of deontology and care ethics. We adopt this position because the primary clinical ethical issues in the context of integrated care concern: how to ensure that all duties of care to individual patients are met in a newly orientated working environment where clinical responsibility may be ambiguous; and the need to orientate care around the patient by foregrounding their autonomous preferences and ensuring good patient clinician relationships in clinical decision-making. (shrink)

Background: Direct–to–consumer genetic testing (DTCGT) offers risk estimates for a variety of complex diseases and conditions, yet little is known about its impact on actual users, including their decisions about sharing the information gleaned from testing. Ethical considerations include the impact of unsolicited genetic information with variable validity and clinical utility on relatives, and the possible burden to the health care system if revealed to physicians. Aims: The qualitative study explored primary care patients’ views, attitudes, and decision (...) making considerations regarding DTCGT. This article focuses on the disclosure decisions participants made regarding participation, testing, and results of DTCGT, a topic which arose as a secondary aim of the study. Methods: Through four longitudinal interviews (pre–test, results, 3 and 12 months post–test) we examined twenty primary care patients’ decisions, expressed intentions, and actions regarding disclosure to immediate and extended family, friends and coworkers, and physicians about participation in and results of DTCGT. Individual interviews were analyzed using qualitative content analysis and a summative approach to describe the global themes. Results: Most participants disclosed to some immediate family; less than half disclosed to extended family; approximately half talked to friends. Most participants stated they would or might disclose to physicians about DTCGT and a few did. Conceptual themes that emerged from the data analysis include ambivalence about disclosure, consistency between intention and actual disclosure behavior and decisions, and conditional information sharing. Conclusions: Participants’ intentional and actual disclosure patterns offer insight into how they view DTCGT, weigh results, and the potential impact of DTCGT. (shrink)

Various aspects of the concepts of privacy and confidentiality are discussed in relation to health care information in primary health care settings. In addition, findings are presented from patient and nurse practitioner focus groups held to elicit concerns that these two groups have in relation to privacy and confidentiality in their respective primary care settings. The focus groups were held prior to the implementation of the Health Insurance Portability and Accessibility Act in the USA. Implications (...) for advanced practice registered nurses in primary care practices are provided. (shrink)

The doctor-patient relationship is a crucial aspect of primary-care practice Research on associations between quality of care provision and burnout and empathy in a primary care setting could improve this relationship. Cross-sectional study of family physicians and nurses of twenty-two primary care centers in the health district of Lleida, Spain. Empathy and burnout were measured using the Jefferson Physician Empathy Scale and the Maslach Burnout Inventory, while quality of care delivery was evaluated (...) using Quality Standard Indicator scores. JPSE and MBI results were grouped into low, medium, and high scores to analyze associations with QSI scores and sociodemographic variables. The mean QSI score recorded for the family physicians and nurses was 665. Higher, albeit insignificant, QSI scores were observed for practitioners with high burnout. No differences were observed according to level of empathy. The differences with respect to sex, age, and area of practice were not significant. Practitioners with low empathy had higher QSI scores than those with high empathy while those with high burnout had higher scores than those with low burnout. Burnout and empathy did not significantly influence quality of care delivery scores in 22 primary care centers. More studies, however, are needed to investigate the unexpected trend observed that suggests that physicians and nurses with higher levels of burnout provide higher quality care. (shrink)

Currently, the number of individuals affected by Alzheimer’s disease is rapidly increasing, expected to reach 14 million in the United States within 30 years. In spite of this impending crisis, less than 50 percent of primary care physicians disclose the diagnosis of dementia to their patients. This failure negatively impacts not only patients but also caregivers, whom dementia patients require to help them meet their needs and who often serve as important decision makers, either as surrogates or as (...) designated healthcare agents for the patient. If caregivers are not informed about and prepared to deal with the challenges they face, their health, both emotional and physical, is put at risk. We will argue that both patient and caregiver have the right to be informed of the diagnosis, as their interests are intertwined, especially as the disease progresses and the caregiver becomes the primary advocate for the patient. The caregiver of an individual with dementia therefore becomes intimately connected to the patient’s autonomy in a way few caregivers of other diseases do. In this article, we will show that a timely and thorough disclosure of the diagnosis is morally obligated by the core principles of medical ethics. As the population ages, primary care physicians must see themselves in a triadic relationship with both the dementia patient and caregiver, recognizing that the interests of both are deeply interdependent. (shrink)