This paper examines how death is managed in a larger regional hospital within the Norwegian health‐care. The central focus of my paper concerns variations in how healthcare personnel enact death and handle the dead patient. Over several decades, modern standardised hospital death has come under critique in the western world. Such critique has resulted in changes in the standardisation of hospital deaths within Norwegian health‐care. In the wake of the hospice movement and with greater focus on palliative care, doors have (...) gradually been opened and relatives of the deceased are now more often invited to participate. I explore how the medical practice around death along with the procedure manual of post‐mortem care at Trondheim University Hospital has changed. I argue that in the late‐modern context, standardisation of hospital death is a multidimensional affair, embedded in a far more comprehensive framework than the depersonalised medico‐legal. In the late‐modern Norwegian hospital, interdisciplinary negotiation and co‐operation has allowed a number of different agendas to co‐exist, without any ensuing loss of the medical power holder's authority to broker death. I follow Mol's notion of praxiographic orientation of the actor–network approach while exploring this medical practice. (shrink)

The idea that physicians should accept recommendations from learned colleagues on how to practice medicine is probably as old as medicine itself, but beginning around 1990, it took on new urgency in the face of rising health care costs, widespread, unjustifiable variation in practice patterns, concerns about medical errors and quality of care, and what some perceived to be perverse effects of the malpractice system. One solution put forward was practice guidelines, which the Institute of (...) Medicine defined as systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances. (shrink)

BackgroundObtaining informed consent for intravenous thrombolysis in acute ischemic stroke can be challenging, and little is known about if and how the informed consent procedure is performed by neurologists in clinical practice. This study examines the procedure of informed consent for intravenous thrombolysis in acute ischemic stroke in high-volume stroke centers in the Netherlands.MethodsIn four high volume stroke centers, neurology residents and attending neurologists received an online questionnaire concerning informed consent for thrombolysis with tissue-type plasminogen activator (tPA). The respondents (...) were asked to report their usual informed consent practice for tPA treatment and their considerations on whether informed consent should be obtained.ResultsFrom the 203 invited clinicians, 50% (n = 101) completed the questionnaire. One-third of the neurology residents (n = 21) and 21% of the neurologists (n = 8) reported that they always obtain informed consent for tPA treatment. If a patient is not capable of providing informed consent, 30% of the residents (n = 19) reported that they start tPA treatment without informed consent. In these circumstances, 53% of the neurologists (n = 20) reported that the resident under their supervision would start tPA treatment without informed consent. Most neurologists (n = 21; 55%) and neurology residents (n = 45; 72%) obtained informed consent within one minute. None of the respondents used more than five minutes for informed consent. Important themes regarding obtaining informed consent for treatment were patients’ capacity, and medical, ethical and legal considerations.ConclusionThe current practice of informed consent for thrombolysis in acute ischemic stroke varies among neurologists and neurology residents. If informed consent is obtained, most clinicians stated to obtain informed consent within one minute. In the future, a shortened information provision process may be applied, making a shift from informed consent to informed refusal, while still considering the patient’s capacity, stroke severity, and possible treatment delays. (shrink)

The use of recent research on variations in medical practice to promote competitive market oriented cost containment strategies is critically examined. Research demonstrating widespread variations in physician practices for similar patient populations undermines the medical profession's claims about the scientific objectivity of medical practice and indicates the existence of widespread waste and inappropriate utilization of health care resources. Cost containment programs which rely on market-based care avoidance incentives, such as Medicare prospective payment or cost sharing (...) plans, attempt to impact medical practice variations by creating economic barriers between doctor and patient. An alternative interpretation of research on practice variations is presented, emphasizing containing costs while improving quality of care and achieving greater equity through planning and regulation of medical supply factors. (shrink)

Rationale and objectives: Medical humanities are becoming increasingly recognized as positively impacting medical education and medical practice. However, the extent of medical humanities teaching in medical schools is largely unknown. We reviewed medical school curricula in Canada, the UK and the US. We also explored the relationship between medical school ranking and the inclusion of medical humanities in the curricula. -/- Methods: We searched the curriculum websites of all accredited medical (...) schools in Canada, the UK and the US to check which medical humanities topics were taught, and whether they were mandatory or optional. We then noted rankings both by Times Higher Education and U.S. News and World Report and calculated the average rank. We formally explored whether there was an association between average medical school ranking and medical humanities offerings using Spearman's correlation and inverse variance weighting meta-analysis. -/- Results: We identified 18 accredited medical school programmes in Canada, 41 in the UK, and 154 in the US. Of these, nine (56%) in Canada, 34 (73%) in the UK and 124 (80%) in the US offered at least one medical humanity that was not ethics. The most common medical humanities were medical humanities (unspecified), history, and literature (Canada); sociology and social medicine, medical humanities (unspecified), and art (UK); and medical humanities (unspecified), literature and history (US). Higher ranked medical schools appeared less likely to offer medical humanities. -/- Conclusions: The extent and content of medical humanities offerings at accredited medical schools in Canada, the UK and the US varies, and there appears to be an inverse relationship between medical school quality and medical humanities offerings. Our analysis was limited by the data provided on the Universities' websites. Given the potential for medical humanities to improve medical education and medical practice, opportunities to reduce this variation should be exploited. (shrink)

Recent approaches in the medical and social sciences have begun to lay stress on “plasticity” as a key feature of human physiological experiences. Plasticity helps to account for significant differences within and between populations, particularly in relation to variations in basic physiological processes, such as brain development, and, in the context of this article, daily sleep needs. This article proposes a novel basis for the redevelopment of institutions in accordance with growing awareness of human variation in physiological needs, (...) and articulates a theory of multibiologism. This approach seeks to expand the range of “normal” physiological experiences to respond to human plasticity, but also to move beyond critiques of medical practice that see medicine as simply responding to capitalist demands through the medicalization of “natural” processes. Instead, by focusing on how the institutions of U.S. everyday life—work, family, and school—structure the lives of individuals and produce certain forms of sleep as pathological, this article proposes that minor alterations in institutions could result in less pathologization for individuals and communities. Multibiologism provides a foundation for shared priorities in the social sciences, in bioethics, and in medical practice, and may lay the groundwork for emergent collaborations in institutional reform. (shrink)

During the Nazi era, physicians provided expertise and a veneer of legitimacy enabling crimes against humanity. In a creative educational initiative to address current ethical dilemmas in clinical medicine, we conduct ethics learning missions bringing senior physicians to relevant Nazi era sites in either Germany or Poland. The tours share a core curriculum contextualising history and medical ethics, with variations in emphasis. Tours to Germany provide an understanding of the theoretical origins of the ethical violations and crimes of Nazi (...) physicians. Tours to Poland address the magnitude of the Nazi physician’s atrocities as well as displays of heroism by Jewish and righteous among the nations' physicians. Exemplary as well as shameful physician behaviour is analysed from an ethical perspective. A combination of unique educational methodologies maximises learning and personal growth, enabling participants to examine ethically complex clinical situations with extrapolation to modern-day medical practice. Learning is designed with relevance to contemporary medical ethics dilemmas such as beginning and end-of-life issues, providing tenets from which participants can develop as more ethical and informed physicians. Participant feedback confirms efficacy and worth of these growth-promoting ethics learning tours which should be expanded to other international groups and settings. (shrink)

Over the last decade, standards for when and how to undertake a wide range of medical interventions have poured forth from medical specialty groups, commercial and nonprofit organizations, and state and federal panels. Known by a variety of names—from practice parameters to clinical guidelines—and intended for a range of purposes—from diminishing the incidence of maloccurences in hospitals to cutting the costs of health care—these guidelines share one important feature: the intention of decreasing the range of variation (...) in medical practice. Such standardization immediately appeals to anyone interested in improving the quality of health care and, in particular, reducing inappropriate medical interventions, in light of the difficulties for a conscientious physician today in adhering to the best standard of practice when faced with ever increasing medical knowledge and the growing number and complexity of diagnostic, preventive, and therapeutic interventions. (shrink)

Death and dying are natural phenomena embedded within complex political, cultural and social systems. Nurses often practice at the forefront of this process and have a fundamental role in caring for both patients and those close to them during the process of dying and following death. While nursing has a rich tradition in advancing the palliative and end‐of‐life care movement, new modes of care for patients with serious and irremediable medical conditions arise when assisted death is legalized in (...) a particular jurisdiction. In early 2015, the Supreme Court of Canada released its landmark decision Carter v. Canada (Attorney General) (‘Carter’), which legalized physician‐assisted suicide in particular clinical situations. The new law provided the broad national framework for Medical Assistance in Dying (MAiD) in Canada but, once the law was passed, provincial and territorial governments and health professional regulatory bodies each had to undertake a process of developing policies, procedures and processes to guide MAiD‐related practice specific to their jurisdiction. In this paper, we begin to examine the political ramifications and professional tensions arising from MAiD for nurses and nursing, focusing specifically upon the impacts for registered nurses. We identify how variations in the provincial and territorial literature and regulatory guidelines across Canada have given rise to role confusion and uncertainty among some registered nurses and how this may potentially impact patient care. We then continue to highlight the need for greater political activism among nurses to foster greater clarity in nursing roles in MAiD and to advocate for improved supports for patients and those close to them. (shrink)

The purpose of this paper is to contribute to the ongoing analyses that aim to confront the problem of marked variation. Negatively marked differences are those natural variations that are used to cleave human beings into different categories (e.g., of disablement, of medicalized pathology, of subnormalcy, or of deviance). The problem of marked variation is: Why are some rather than other variations marked as epistemically or culturally significant or as a diagnostic of pathology, and What is the epistemic (...) background that makes these—rather than other variations—marked as subnormal? For Wilson (2018a), critical examination of the problem of marked variation is central to understanding the epistemology of medicalized pathology that made the history of eugenics possible. My aim is to explore the role marked variation plays in eugenic and other problematic classifications and the inferences they appear to license. I pay particular attention to the normative valuations of marked variations, how these valuations affect the inferences that are made by others about those possessing the variation, and how those possessing the variation perceive themselves. In the final sections, I illustrate this by critically discussing three putative kinship conceptions of race. I rely on these to extend the scope of the puzzle of marked variation from the context of historic and current markings of an individual’s variation as disability in the eugenics movement to historic and current markings for assigning putative racial ascriptions to individuals and groups. Lastly, I suggest that the problem of marked variation is a problem that looms over any epistemic account that is dependent upon sorting or classifying. (shrink)

Objectives: Machine learning (ML) has the potential to facilitate “continual learning” in medicine, in which an ML system continues to evolve in response to exposure to new data over time, even after being deployed in a clinical setting. In this article, we provide a tutorial on the range of ethical issues raised by the use of such “adaptive” ML systems in medicine that have, thus far, been neglected in the literature. -/- Target audience: The target audiences for this tutorial are (...) the developers of ML AI systems, healthcare regulators, the broader medical informatics community, and practicing clinicians. -/- Scope: Discussions of adaptive ML systems to date have overlooked the distinction between 2 sorts of variance that such systems may exhibit—diachronic evolution (change over time) and synchronic variation (difference between cotemporaneous instantiations of the algorithm at different sites)—and underestimated the significance of the latter. We highlight the challenges that diachronic evolution and synchronic variation present for the quality of patient care, informed consent, and equity, and discuss the complex ethical trade-offs involved in the design of such systems. (shrink)

PHOTO ID 121339257© Designer491| Dreamstime.com ABSTRACT When physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be apparent conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters future physicians’ commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. We use an ethical dilemma that was presented to a group of third-year medical students to examine how ethics education might (...) be causing them to give undue deference to autonomy, thereby undermining their commitment to beneficence. INTRODUCTION The right of patients to choose which treatments they prefer is rooted in today’s social mores and taught as a principle of medical ethics as respect for autonomy. Yet, when physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be a conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters a commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. I. An Ethical Dilemma The impetus for this paper arose when students who were completing their third clinical year discussed a real-life ethical dilemma. A middle-aged man developed a pulmonary hemorrhage while on blood thinners for a recently placed coronary stent. The bleeding was felt to be reversible, but the patient needed immediate intubation or he would die. The cardiologist was told that the patient previously expressed to other physicians that he never wanted to be intubated. However, the cardiologist made the decision to intubate the patient anyway, and the patient eventually recovered.[1] Students were asked if they believed that the cardiologist had acted ethically. Their overwhelming response was, “No, the patient should have been allowed to die.” We looked into how students applied ethical reasoning to conclude that this outcome was ethically preferred. To explore how the third-year clinical experience might have formed the students’ judgment, we presented the same case to students who were just beginning their third year. Their responses were essentially uniform in recommending intubation. While there is likely more than one reasonable view in this case, we agree with the physician and the younger medical students that intubation was the ethically appropriate decision and will present an argument for it. But first, we explain the reasoning behind the more advanced medical students’ decision to choose patient autonomy at the expense of beneficence. II. Medical Ethics Education and the Priority of Autonomy Beauchamp and Childress’s Principles of Biomedical Ethics, first published in 1979 and now in its 8th edition, is a significant part of the formal ethics education in medical school.[2] Students learn an ethical decision-making approach based on respect for four ethical principles: autonomy, beneficence, nonmaleficence, and justice. While Beauchamp and Childress officially afford no prima facie superiority to any principle, the importance of respect for patient autonomy has increased through the editions of their book. For example, early editions of their book opposed the legalization of physician-assisted death compared to recent editions that defended it.[3] As another example, Beauchamp and Childress make paternalism harder to justify by adding an autonomy-protecting condition to the list of conditions for acceptable paternalism.[4] Authority, they contend, need not conflict with autonomy—provided the authority is autonomously chosen.[5] “The main requirement,” they write, “is to respect a particular patient’s or subject’s autonomous choices, whatever they may be.[6] In the principlism of Beauchamp and Childress, autonomy now seems to have a kind of default priority.[7] However, the bioethics discourse has strong counternarratives, noting some movement to elevate the role of beneficence and to respect the input of stakeholders, including the family and the healthcare team. Ethics education achieves particular relevance in the third clinical year when students become embedded in the care of patients and learn from what has been called the informal curriculum. They observe how attending physicians approach day-to-day ethical problems at the patient’s bedside. In this context, students observe the importance of informed consent for serious treatments or invasive procedures, a practice that highlights the principle of patient autonomy. In both the formal and informal curriculum, medical students observe how, in the words of Paul Wolpe, “patient autonomy has become the central and most powerful principle in ethical decision-making in American medicine.”[8] In short, students appear to learn a deference for patient autonomy. This curricular shift in favor of autonomy coincides with legal developments that protect patients’ rights and decision-making with respect to their healthcare choices. The priority of autonomy in medicine benefits patients by reflecting their choices and, in some cases, their fundamental liberty. III. The Practice of Medicine and the Commitment to Beneficence There are many critiques of the dominant place that autonomy has in biomedical ethics,[9] especially considering that autonomy seems to be biased toward individualistic, Western, and somewhat American culture-driven values.[10] In addition, many bioethical dilemmas are cast as a conflict between autonomy and beneficence. Our point is that medical students bring to their study of medicine a commitment to beneficence that seems to be suppressed by practical ethics education. We think this commitment is rationally defensible and should be nurtured. It is striking that young medical students have a pre-reflective commitment to beneficence at all. For, as we mentioned, it is not just medicine but Western culture generally that prioritizes autonomy in settling ethical dilemmas. In wanting to act for the good of others (rather than simply agreeing to what others want), physicians are already swimming somewhat against the cultural tide.[11] However, doing so makes sense, given the nature of medicine and the profession of healing. When prospective medical students are asked why they wish to become physicians, the usual answer is some variation on caring for the sick and preventing disease. It is unlikely that a reason to become a physician is to respect a patient’s autonomy. It would be easy to dismiss medical students’ commitment to beneficence as a mere intuition and contrary to a more reasoned and deliberative approach. Beauchamp and Childress seem to minimize the value of physician intuition, stating that justifications for certain procedures are “…supported by good reasons. They need not rest merely in intuition or feeling.”[12] Henry Richardson writes that “situational or perceptive intuition…leaves the reasons for decision unarticulated.”[13] We think this is a crude and rather thin way of understanding intuition. Some bioethicists have defended intuition as essential to the practice of medicine and not something opposed to reason.[14] In the case we describe, we believe the ethical justifications s for the patient’s intubation are fundamentally sound: the patient did not have a “do not intubate” order written in the chart, the emergency intubation had not been foreseen, so the patient did not have the opportunity to consent to or reject intubation; the patient had consented to the treatment for his cardiac disease so his consent for intubation could have been assumed;[15] and the consequences of respecting his autonomy did not justify allowing him to die.[16] While it is possible to have more than one reasonable view on this case, we think the case for beneficence is strong and certainly should not be dismissed out of hand. We do not deny that if a patient makes a clearly documented, well-informed decision to forgo intubation that this decision ought to be respected by the physician (even if the physician disagrees with the patient’s decision). But, in this situation, as in many others in the practice of medicine, the patient’s real wishes and preferences are not well-articulated in advance. There are many cases where a physician acts based on what she believes the patient, or the surrogate, would want, sometimes in situations that do not allow much time for reflection. An example might be resuscitation of a newborn at the borderline of viability. In their ethics education, beneficence would mean acting first to save a life. If the patient or surrogate makes an informed decision to the contrary, a beneficent physician respects that autonomous decision. In the case presented, the patient expressed gratitude to the cardiologist when extubated. But what if he had expressed anger at the physician for violating his autonomy? There are those who could argue that not only was intubation ethically wrong but that the cardiologist put himself in legal jeopardy by his actions (especially if there had been a written refusal applicable to the specific situation). In the example we use, we point out that the cardiologist may not have escaped a lawsuit if the patient had died without intubation. His family, when hearing the circumstances, may have sued for failure to act and dereliction of the cardiologist’s duty to save him. Beyond a potential legal challenge for either action or inaction, there is an overriding ethical question the cardiologist had to address: what course would be most satisfying to his conscience? Would he rather allow a patient to die for fear of recrimination, or act to save his life, regardless of the personal consequences? In the absence of real knowledge about the patient’s considered wishes, it is most reasonable to err on the side of promoting patient well-being. A physician’s commitment to beneficence is not necessarily a way of undermining a patient’s autonomy. In acting for the patient's good, physicians are also acting on what it is reasonable to believe a patient (or most patients, perhaps) would want, which is obviously connected to what a patient does want. Pellegrino and Thomasma argue that beneficence includes respect for a patient’s autonomy since “the best interests of the patient are intimately linked with their preferences.”[17] Instead of conceptualizing ethical dilemmas in medicine as conflicts between autonomy and beneficence, it is possible that medical schools could teach students that truly practicing beneficence is a way of valuing patient autonomy, especially when the patient’s wishes are not specific to the situation and are not clearly expressed. CONCLUSION It is important for students and practicing physicians to understand the principle of respect for patient autonomy in a pluralistic society that demands personal self-determination. However, the role of the physician as a beneficent healer should not be diminished by this respect for autonomy. Respecting a patient’s autonomy is grounded in and manifested by physician beneficence.[18] That is, seeking what is good for the patient can only be good if it respects their personhood and dignity. We propose that a commitment to beneficence, incipient in young medical students, should be developed over time with their other clinical reasoning skills. Such a commitment need not be sacrificed on the altar of patient autonomy. Beneficence needs greater relative moral weight with students as they proceed in their ethics education. - [1] S. Jauhar, “When Doctors Need to Lie,” New York Times, February 22, 2014, https://www.nytimes.com/2014/02/23/opinion/sunday/when-doctors-need-to-lie.html. [2] T. L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019). [3] Louise A. Mitchell, “Major Changes in Principles of Biomedical Ethics,” The National Catholic Bioethics Quarterly 14, no. 3 (2014): 459–75, https://doi.org/10.5840/ncbq20141438. [4] Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019), 238. [5] Beauchamp and Childress, 103. [6] Beauchamp and Childress, p. 108. [7] For other accounts that prioritize autonomy, see e.g. Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge University Press, 1989), 38–39; R Gillon, “Ethics Needs Principles—Four Can Encompass the Rest—and Respect for Autonomy Should Be ‘First among Equals,’” Journal of Medical Ethics 29, no. 5 (October 2003): 307–12, https://doi.org/10.1136/jme.29.5.307. For examples of critiques of these accounts, see footnote 9. [8] P. R. Wolpe, “The Triumph of Autonomy in American Bioethics: A Sociological View,” in Bioethics and Society: Constructing the Ethical Enterprise, p. 43. [9] V. A. Entwistle et al., “Supporting Patient Autonomy: The Importance of Clinician-Patient Relationships,” Journal of General Internal Medicine 25, no. 7 (July 2010): 741–45; C. Foster, Choosing Life, Choosing Death: The Tyranny of Autonomy in Medical Ethics and Law, 1st ed. (Oxford ; Hart Publishing, 2009); O. O’Neill, Autonomy and Trust in Bioethics, The Gifford Lectures, University of Edinburgh 2001 (Cambridge, UK: Cambridge University Press, 2002). [10] P. Marshall and B. Koenig, “Accounting for Culture in a Globalized Bioethics,” The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics 32, no. 2 (2004): 252–66; R. Fan, “Self-Determination vs. Family-Determination: Two Incommensurable Principles of Autonomy,” Bioethics 11, no. 3–4 (1997): 309–22. [11] Arguments stressing the importance of beneficence, as ours does here, certainly approach paternalistic arguments. We set aside the complex issue of paternalism for purposes of this paper and simply note that the principle of beneficence as such does not say anything specifically about acting against the patient’s will. In the case study that focuses this paper, we do not believe the patient’s will or wishes were clearly indicated. [12] Beauchamp and Childress, Principles of Biomedical Ethics, p. 20, see note 2 above. [13] H. S. Richardson, “Specifying, Balancing, and Interpreting Bioethical Principles,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 25, no. 3 (January 1, 2000): 285–307, p. 287. [14] H. D. Braude, Intuition in Medicine a Philosophical Defense of Clinical Reasoning (Chicago ; University of Chicago Press, 2012). [15] R. Kukla, “Conscientious Autonomy: Displacing Decisions in Health Care,” The Hastings Center Report 35, no. 2 (2005): 34–44. [16] M. Schermer, The Different Faces of Autonomy: Patient Autonomy in Ethical Theory and Hospital Practice, vol. 13, Library of Ethics and Applied Philosophy (Dordrecht: Springer Netherlands, 2002). [17] E. D. Pellegrino and D. C. Thomasma, For the Patient’s Good - the Restoration of Beneficence in Health Care (New York, NY: Oxford University Press, 1988), p. 29. [18] Pellegrino and Thomasma, For the Patient’s Good. 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Introduction: Variation across research ethics boards in conditions placed on access to medical records for research purposes raises concerns around negative impacts on research quality and on human subject protection, including privacy.Aim: To study variation in REB consent requirements for retrospective chart review and who may have access to the medical record for data abstraction.Methods: Thirty 90-min face-to-face interviews were conducted with REB chairs and administrators affiliated with faculties of medicine in Canadian universities, using structured questions (...) around a case study with open-ended responses. Interviews were recorded, transcribed and coded manually.Results: Fourteen sites required individual patient consent for the study to proceed as proposed. Three indicated that their response would depend on how potentially identifying variables would be managed. Eleven sites did not require consent. Two suggested a notification and opt-out process. Most stated that consent would be required if identifiable information was being abstracted from the record. Among those not requiring consent, there was substantial variation in recognising that the abstracted information could potentially indirectly re-identify individuals. Concern over access to medical records by an outside individual was also associated with requirement for consent. Eighteen sites required full committee review. Sixteen allowed an external research assistant to abstract information from the health record.Conclusions: Large variation was found across sites in the requirement for consent for research involving access to medical records. REBs need training in best practices for protecting privacy and confidentiality in health research. A forum for REB chairs to confidentially share concerns and decisions about specific studies could also reduce variation in decisions. (shrink)

The article analyzes the philosophical and cultural view of 'doctor’s professional culture' as a result of centuries-old practice of human relations, which is characterized by constancy and passed from generation to generation. Medicine is a complex system in which an important role is played by: philosophical outlook of a doctor, philosophical culture, ecological culture, moral culture, aesthetic culture, artistic culture. We have found that within the system “doctor-patient” the degree of cultural proximity becomes a factor that influences the health (...) or life of a patient. Thus, the following factors are important here: 1) communication that suppresses a sick person; 2) the balance of cultural and intellectual levels; 3) the cultural environment of a patient which has much more powerful impact on a patient than the medical one. At the present stage, the interdependence of professional and humanitarian training of future specialists is predominant, as a highly skilled specialist can not but become a subject of philosophizing. We outlined the sphere where the doctors present a genre variety of philosophizing. This tradition represents the original variations in the formation of future doctor’s communicative competences, which are formed in the process of medical students’ professional training. A survey conducted among medical students made it possible to establish their professional values, which are indicators of the formation of philosophical and culturological competence. It was found out that 92% of respondents believed that a doctor should demonstrate a high level of health culture 99% of respondents favoured a high level of personal qualities of a doctor which would allow methods and forms of medical practice to assert higher human ideals of truth, goodness and beauty that are the subject area of cultural studies and philosophy. (shrink)

Aim: Explore nurses’ values and perceptions regarding the practice of medical aid in dying. Background: Medical aid in dying is becoming increasing legal in the United States. The laws and American Nurses Association documents limit nursing involvement in this practice. Nurses’ values regarding this controversial topic are poorly understood. Methodology: Cross-sectional electronic survey design sent to nurse members of the American Nurses Association. Inductive thematic content analysis was applied to open-ended comments. Ethical Considerations: Approved by the (...) institutional review board (#191046). Participants: 1213 nurses provided 3639 open-ended comments. More than 80% of participants self-identified as white 58% held a graduate degree; and half were of Christian faith. Results: Values ranged on a continuum expressed through four themes: “Honoring Patient Autonomy without Judgment,” “Honoring with Limitations,” “Not until...,” and “Adamantly against.” Some felt it was a duty to honor the patients’ wishes, set aside own beliefs, and respect patients’ choices often with a spiritual connotation. Nurses held concerns about the process, policy, potential psychological harm, legal risk, and the need to learn more about MAID. Nurse who were adamantly against MAID associated the practice with murder/suicide and against religious beliefs. Disparate values were expressed about changing the MAID legislation to allow patient support with taking MAID medications and allowing MAID via advance directive. Conclusions: Nurses desire more education on MAID. There is not one universally held position on the nurse’s role during MAID. Healthcare policy/standards need to accommodate the wide variation in nurses’ values. Implications: Nurses desire education regarding their role in MAID. Nurses are encouraged to participate in policy discussions as the practice becomes increasingly legal. Managers need to expect that nurses, patients, and families will need psychological support to participate in MAID. Careful construction of policy/standards is needed to minimize conflict, moral distress, and psychological harm amongst nurses. Further research is needed. (shrink)

It is a common refrain amongst phenomenologists, disability theorists, and feminist legal theorists that medical practice pays insufficient attention to people’s embodiment. The complaint that we take insufficient account of people’s embodiment isn’t limited to the clinical interaction. It has also been directed at healthcare regulation and welfare policy. In this paper, I examine the arguments for taking embodiment seriously in both medical practice and welfare policy, concluding we have good reasons to take better account of (...) people’s embodiment. I then set out two challenges to taking embodiment seriously in public policy. First, given the amount of variation in how people are embodied, there is strong possibility that adjusting policy to benefit particular individuals based on an appreciation of their embodied experiences could be detrimental towards other individuals. The second challenge concerns how to ensure that people’s testimony about their first-person embodied experience is subject to adequate scrutiny without this resulting in epistemic injustice. I argue that the solution to both of these challenges is to devise a just procedure for soliciting people’s testimony and taking it into account in the policy development process. As such, I also provide an outline of what a just procedure should look like. (shrink)

In many countries where human embryo commercialization is banned, and no profit is allowed to be made directly from the transaction of frozen embryos between donor and recipient, there is still considerable opportunity for profiteering in medical fees arising from laboratory and clinical services rendered to the recipient. It is easy to disguise the 'sale' of altruistically donated human embryos through substantially increased medical fees, particularly in a private practice setting. The pertinent question that arises is what (...) would constitute a fair and honest profit margin for the medical professional and health institution in question? A suitable benchmark would obviously be the level of medical fees normally charged to patients for a self-freeze/thaw embryo transfer cycle, after initial failure at their first attempt in ART. This is because the level of medical expertise, clinical and laboratory services required for a donor- and self-freeze/thaw embryo transfer cycle should, in theory, be about the same, although slight variation in treatment can be expected owing to patients' respective medical histories, which results in varying predisposition to medical complications. In any case, the health authority should ensure that there is no gross disparity in the medical fees for both donor- and self-freeze/thaw embryo transfer cycle, as this could mask opportunistic profiteering by medical professionals and, in fact, be a covert form of embryo commercialization. (shrink)

In the Australian state of Victoria, legislation allowing voluntary assisted dying (VAD) passed through parliament in November 2017. There was then an eighteen-month period before the start date for patient access to VAD, referred to as the “implementation period.” The implementation period was intended to allow time for the relevant government department and affected organizations to develop processes before the Act came into effect in June 2019. This qualitative interview study investigates the perspectives of a multidisciplinary sample of twelve clinicians (...) from a single metropolitan hospital during this implementation period. Maximum variation sampling was utilized to ensure breadth across discipline (medical, nursing, allied health), speciality, and stated level of support for the VAD legislation. Four key themes were identified from the interview data: preparing for the unknown, ethical diversity within the organization, building a respectful culture, and concerns about the inability of the legislated approach to capture clinical nuances. Overall, these clinicians’ workplace experiences during the implementation period were shaped by the ethical diversity within their organization and a sense of uncertainty about how the VAD legislation would integrate with the practical realities of their clinical setting. The concept of “ethical diversity” could be a useful one for supporting staff in an organization during a VAD implementation period. (shrink)

This paper examines two topics in Japanese medical ethics: non-disclosure of medical information by Japanese physicians, and the history of human rights abuses by Japanese physicians during World War II. These contrasting issues show how culture shapes our view of ethically appropriate behavior in medicine. An understanding of cultural context reveals that certain practices, such as withholding diagnostic information from patients, may represent ethical behavior in that context. In contrast, nonconsensual human experimentation designed to harm the patient is (...) inherently unethical irrespective of cultural context. Attempts to define moral consensus in bioethics, and to distinguish between acceptable and unacceptable variation across different cultural contexts, remain central challenges in articulating international, culturally sensitive norms in medical ethics. (shrink)

The scarcity of human organs requires the transplant community to make difficult allocation decisions. This process begins at individual medical centers, where transplant teams decide which patients to place on the transplant waiting list. Each transplant center utilizes its own listing criteria to determine if a patient is eligible for transplantation. These criteria have historically considered preexisting affective and psychotic disorders to be relative or absolute contraindications to transplantation. While attitudes within the field appear to be moving away from (...) this practice, there is no data to confirm that eligibility criteria have changed. There are no nationwide guidelines detailing the manner in which affective and psychotic disorders should impact transplant eligibility. Individual transplant centers thus form their own transplant eligibility criteria, resulting in significant inter-institution variability. Data from the 1990s indicates that the majority of transplant programs considered certain psychiatric illnesses, such as active schizophrenia, to be absolute contraindications to transplantation. A review of literature reveals that no comprehensive data has been collected on the topic since that time. Furthermore, the limited data available about current practices suggests that psychiatric illness continues to be viewed as a contraindication to transplantation at some transplant centers. In light of this finding, we review psychiatric literature that examines the impact of affective and psychotic disorders on transplant outcomes and conclude that the presence of these disorders is not an accurate predictor of transplant success. We then discuss the requirements of justice as they relate to the creation of a just organ allocation system. We conclude that transplant eligibility criteria that exclude patients with affective and psychotic disorders on the basis of their psychiatric diagnosis alone are unjust. Just listing criteria must incorporate only those factors that have a causative effect on posttransplant morbidity and mortality. Justice also demands that we eliminate current inter-institution practice variations in favor of national transplant eligibility criteria. Given the limited data available about current practices, we call for an updated study investigating the manner in which affect and psychotic disorders impact transplant eligibility determinations. (shrink)

Social judgement theory is particularly well suited to the study of medical judgements. Medical judgements characteristically involve decision making under uncertainty with inevitable error and an abundance of fallible cues. In medicine, as in other areas, SJT research has found wide variation among decision makers in their judgements and in the weighting of clinical information. Strategies inferred from case vignettes differ from physicians' self-described strategies and from the weights suggested by experts. These observations parallel recent findings of (...) unexplained variation in diagnosis and management in clinical practice that have been the source of concern in the medical community. The lens model provides one of the few methods for quantitatively analysing physicians' judgements. Contrary to what one might expect from the variation in strategies on paper cases, several studies suggest that, in practice, physicians' diagnostic judgements are highly accurate. Cognitive feedback has been less successful as a practical teaching tool than originally hoped, but some aspects of this methodology show promise, particularly in conjunction with the increasing emphasis on statistical decision support. All things considered, SJT has provided insight into physicians' decisions and gives the medical research community important tools for studying judgements in actual practice. (shrink)

Background Intestinal transplant in infants with severe short bowel syndrome (SBS) is an emerging therapy, yet without sufficient long-term data or established guidelines, resulting in possible variation in practice. Objectives To assess current attitudes and counselling practices among physicians regarding intestinal transplant in infants with SBS, and to determine whether counselling and management vary between subspecialists or centres. Methods A national sample of practicing paediatric surgeons and neonatologists was surveyed via the American Academy of Paediatrics listserves. Results were (...) analysed by physician subspecialty and again by presence or absence of intestinal transplant at respondent's centre. Results The survey was completed by 433 respondents, consisting of 363 neonatologists and 70 paediatric surgeons. Fifty-seven respondents (13.2%) practiced at a centre that performed intestinal transplants in children. The vast majority of respondents (91% for preterm, 95% for term neonates) felt that maintaining a neonate with SBS on total parenteral nutrition for intestinal transplant was ethically optional (neither impermissible nor obligatory), and that parents should be given an informed choice whether to pursue that option. However, only 33% indicated they often/always offer intestinal transplant as a treatment option to families in this situation. Conclusions There is a marked disparity between individual physicians’ beliefs regarding the acceptability of intestinal transplant for severe SBS and their reported practice. Wide variability exists among physicians with respect to their knowledge, beliefs and practice regarding severe SBS, raising concerns about transparency and justice. Survival data prior to transplant, currently unavailable, are essential to rational decision making and informed parental permission. (shrink)

Attitudes to, and practices of, scientific authorship vary. We have studied this variation among researchers in a university hospital and medical school in Norway.

Introduction: Healthcare practitioners have a legal, ethical and professional obligation to obtain patient consent for all healthcare treatments. There is increasing evidence which suggests dissonance and variation in practice in assessment of decision-making capacity and consent processes. Aims: This study explores healthcare practitioners’ knowledge and practices of assessing decision-making capacity and obtaining patient consent to treatment in the acute generalist setting. Methods: An exploratory descriptive cross-sectional survey design, using an online questionnaire, method was employed with all professional groups (...) invited via email to participate. Data were collected over 3 months from July to September 2015. Survey content and format was reviewed by the liaison psychiatry team and subsequently contained five sections (demographics, general knowledge and practice, delirium context, legal aspects and education/training). Descriptive, univariate and bivariate analysis of quantitative data and qualitative content analysis of qualitative data were undertaken. Ethical considerations: The study was approved by the institutional Human Research and Ethics Committee and informed consent was taken to be provided by participants upon completion and submission of the de-identified survey. Results: In total, 86 participants engaged the survey with n = 24, exiting at the first consent question. Almost two-thirds of respondents indicated that all treatments required patient consent. Knowledge of consent and decision-making capacity as legal constructs was deficient. Decision-making capacity was primarily assessed using professional judgement and perceived predominantly as the responsibility of medical and psychology staff. A range of patient psychological and behavioural symptoms were identified as indicators requiring assessment of decision-making capacity. Despite this, many patients with delirium have their decision-making capacity assessed and documented only sometimes. Uncertain knowledge and inconsistent application of legislative frameworks are evident. Many participants were unsure of the legal mechanisms for obtaining substitute consent in patients with impaired decision-making capacity and refusing treatment. Conclusion: The legal context of decision-making capacity and consent to treatment appears complex for healthcare practitioners. Professional, ethical and legal standards of care in this context can benefit from structured education programmes and supportive governance processes. An understanding of why ‘duty of care’ is being used as a framework within the context of impaired decision-making capacity is warranted, alongside a review of the context of Duty of Care within health policy, guidance and faculty teaching. (shrink)

Lionel Penrose (1898–1972) was an important leader during the mid-20th century decline of eugenics and the development of modern medical genetics. However, historians have paid little attention to his radical theoretical challenges to mainline eugenic concepts of mental disease. Working from a classification system developed with his colleague, E. O. Lewis, Penrose developed a statistically sophisticated and clinically grounded refutation of the popular position that low intelligence is inherently a disease state. In the early 1930s, Penrose advocated dividing “mental (...) defect” (low intelligence) into two categories: “pathological mental defect,” which is a disease state that can be traced to a distinct genetic or environmental cause, and “subcultural mental defect,” which is not an inherent disease state, but rather a statistically necessary manifestation of human variation in intelligence. I explore the historical context and theoretical import of this contribution, discussing its rejection of typological thinking and noting that it preceded Theodosius Dobzhansky’s better-known defense of human diversity. I illustrate the importance of Penrose’s contribution with a discussion of an analogous situation in contemporary medicine, the controversial practice of using human growth hormone injections to treat “idiopathic short stature” (mere diminutive height, with no distinct cause). I show how Penrose’s contributions to understanding human variation make such treatments appear quite misguided. (shrink)

The consent process for publication of clinical images in medical journals varies widely. The extent of this variation is not known. It is also not known whether journals follow their own stated best practices or the guidance of the International Committee of Medical Journal Editors. We assessed consent requirements in a sample of 10 top impact factor general medicine journals that publish clinical images, examining variability in consent requirements for clinical image publication and congruence of requirements with (...) the recommendations of the ICMJE. Clinical image consent requirements varied widely from journal to journal. None of the studied journals, even amongst n = 4 ICMJE members or n = 8 journals who self-report adherence to ICMJE guidelines, comply with all of the recommendations of the ICMJE. Half of studied journals require a journal-specific consent form. Among top medical journals there is significant heterogeneity in consent requirements for clinical images. Variability of consent requirements is neither practical nor rational; inconsistent requirements create uncertainty for authors, present impediments to dissemination of scholarship, and undermine a shared professional understanding of how best to protect patient privacy. We propose adopting a standardized consent form and process for publication of identifiable images in medical journals, with uniform elements and explicit definitions. (shrink)

Climate change, nutrition, poverty and medical drugs are widely discussed and pressing issues in science, policy and society. Despite these issues being of great importance for the quality of our lives it remains unclear how well people understand them. Specifically, do particular demographic and socioeconomic factors explain variation in public understanding of these four concepts? To what extent are people’s changes in understanding associated with changes in their behaviour? Do people judge scientific practices relying on the more descriptive (...) concepts of climate change and effective medical drugs to be more objective (less controversial) than practices relying on the more value-laden concepts of poverty and healthy nutrition? To address these questions, an experimental survey and regression analyses are conducted using data collected from about one thousand participants across different continents. The study finds that public understanding of science is generally low. A smaller proportion of people were able to correctly identify the common explanation accepted internationally among the scientific community for climate change and effectiveness of medical drugs (42% and 43% of participants in the study, respectively) than for poverty and healthy nutrition (61% and 65% of participants, respectively). Older age and political non-conservativeness were the strongest predictors of correctly understanding these four concepts. Greater levels of education and political non-conservativeness were in turn the strongest predictors of people’s reported changes in their behaviour based on their improved understanding of these concepts. Because climate change is among the least understood scientific concepts but is arguably the greatest challenge of our time, better efforts are needed to improve how media, awareness campaigns and education systems mediate information on the topic in order to tackle the large knowledge deficits that constrain behavioural change. (shrink)

Background: Ethics support services are growing in Europe to help doctors in dealing with ethical difficulties. Currently, insufficient attention has been focused on the experiences of doctors who have faced ethical difficulties in these countries to provide an evidence base for the development of these services.Methods: A survey instrument was adapted to explore the types of ethical dilemma faced by European doctors, how they ranked the difficulty of these dilemmas, their satisfaction with the resolution of a recent ethically difficult case (...) and the types of help they would consider useful. The questionnaire was translated and given to general internists in Norway, Switzerland, Italy and the UK.Results: Survey respondents ranged in age from 28 to 82 years, and averaged 25 years in practice. Only a minority reported having access to ethics consultation in individual cases. The ethical difficulties most often reported as being encountered were uncertain or impaired decision-making capacity , disagreement among caregivers and limitation of treatment at the end of life . The frequency of most ethical difficulties varied among countries, as did the type of issue considered most difficult. The types of help most often identified as potentially useful were professional reassurance about the decision being correct , someone capable of providing specific advice , help in weighing outcomes and clarification of the issues . Few of the types of help expected to be useful varied among countries.Conclusion: Cultural differences may indeed influence how doctors perceive ethical difficulties. The type of help needed, however, did not vary markedly. The general structure of ethics support services would not have to be radically altered to suit cultural variations among the surveyed countries. (shrink)

As sharing and secondary research use of biospecimens increases, IRBs and researchers face the challenge of protecting and respecting donors without comprehensive regulations addressing the human subject protection issues posed by biobanking. Variation in IRB biobanking policies about these issues has not been well documented.

The morbidity of tick‐borne encephalitis (TBE) varies yearly by as much as 10‐fold among the people of Western Siberia. This long‐term variation is dependent on many factors such as the density of the tick populations, the prevalence of TBE virus (TBEV) among sub‐adult ticks, the yearly virulence of the TBEV, and prophylactic measures. Here we highlight the role of small mammal hosts in the circulation of TBEV through the ecosystem. Refining classical models of non‐viremic horizontal transmission, we emphasize the (...) recently understood fact that the physiological and immunological status of the small mammal hosts affects the tick and virus‐host interactions. In addition to its theoretical interest, our approach may lead to some practical improvements in the precision of epidemiological forecasts and perhaps in forestalling the severity of outbreaks of TBE, or, at least, in forewarning medical authorities and the general public of impending TBE outbreaks. (shrink)

Since the early 1970s, Marcel Mauss’s Essai sur le Don, translated into English as The Gift in 1954, has been a standard reference in the social science and bioethical literature on the use of human body parts and substances for medical and research purposes. At that time, three social scientists—political scientist Richard Titmuss in the United Kingdom and sociologist Renée C. Fox working with historian Judith Swazey in the United States—had the idea of using this concept to highlight the (...) fundamental structure of the biomedical practices they were studying, respectively, blood donation, and hemodialysis and organ transplantation. The fact that these first applications of Mauss’s essay should emerge in English- rather than in French-speaking countries raises the question of what the translation of the essay, and notably of the word don as gift, may have to do with this fact. Reading Mauss in translation undoubtedly inspired a seminal approach to interpreting medical and research practices based on bodily giving. This article posits that something may have also been lost: a much broader concept of giving with unquestionable links to the Durkheimian concept of solidarity, which Mauss conceptualizes not only as an obligation but also as a liberty to give. (shrink)

Background Research on the impact of ethics reflection groups (ERG) (also called moral case deliberations (MCD)) is complex and scarce. Within a larger study, two years of ERG sessions have been used as an intervention to stimulate ethical reflection about the use of coercive measures. We studied changes in: employees’ attitudes regarding the use of coercion, team competence, user involvement, team cooperation and the handling of disagreement in teams. Methods We used panel data in a longitudinal design study to measure (...) variation in survey scores from multidisciplinary employees from seven departments within three Norwegian mental health care institutions at three time points (T0–T1–T2). Mixed models were used to account for dependence of data in persons who participated more than once. Results In total, 1068 surveys (from 817 employees who did and did not participate in ERG) were included in the analyses. Of these, 7.6% (N = 62) responded at three points in time, 15.5% (N = 127) at two points, and 76.8% (N = 628) once. On average, over time, respondents who participated in ERG viewed coercion more strongly as offending (p < 0.05). Those who presented a case in the ERG sessions showed lower scores on User Involvement (p < 0.001), Team Cooperation (p < 0.01) and Constructive Disagreement (p < 0.01). We observed significant differences in outcomes between individuals from different departments, as well as between different professions. Initial significant changes due to frequency of participation in ERG and case presentation in ERG did not remain statistically significant after adjustment for Departments and Professions. Differences were generally small in absolute terms, possibly due to the low amount of longitudinal data. Conclusions This study measured specific intervention-related outcome parameters for describing the impact of clinical ethics support (CES). Structural implementation of ERGs or MCDs seems to contribute to employees reporting a more critical attitude towards coercion. Ethics support is a complex intervention and studying changes over time is complex in itself. Several recommendations for strengthening the outcomes of future CES evaluation studies are discussed. CES evaluation studies are important, since—despite the intrinsic value of participating in ERG or MCD—CES inherently aims, and should aim, at improving clinical practices. (shrink)

The present study applied Ajzen's (1985) theory of planned behavior to the explanation of ethical decision making. Nurses in three hospitals were provided with scenarios that depicted inadequate patient care and asked if they would report health professionals responsible for the situation. Study results suggest that the theory of planned behavior can explain a significant amount of variation in the intent to report a colleague. Attitude toward performing the behavior explained a large portion of the variance; subjective norms explained (...) a moderate amount of the variance; and, perceived behavioral control added little to the explanation of variance. Implications for research and practice are discussed. (shrink)

OBJECTIVES: To compare the practices of local research ethics committees and the time they take to obtain ethical approval for a multi-centre study. DESIGN: A retrospective analysis of outcome of applications for a multi-centre study to local research ethics committees. SETTING: Thirty-six local research ethics committees covering 38 district health authorities in England. MAIN MEASURES: Response of chairmen and women, the time required to obtain approval, and questions asked in application forms. RESULTS: We received replies from all 36 chairmen contacted: (...) four (11%) granted their approval, and 32 (89%) required our proposal to be considered by their local research ethics committee. Three committees asked us to attend their meetings. The application was approved by all 36 local research ethics committees but the time to obtain ethical approval varied between six to 208 days. One third of the committees did not approve the project within three months, and three took longer than six months. There was considerable variation in the issues raised by local research ethics committees and none conformed exactly to the Royal College of Physicians' guidelines. CONCLUSION: Obtaining ethical approval for a multi-centre study is time-consuming. There is much diversity in the practice of local research ethics committees. Our data support the recommendation for a central or regional review body of multi-centre studies which will be acceptable to all local research ethics committees. (shrink)

Current United States guidelines for neonatal resuscitation note that there is no mandate to resuscitate infants in all situations. For example, the fetus that at the time of delivery is determined to be so premature as to be non-viable need not be aggressively resuscitated. The hypothetical case of an extremely premature infant was presented to neonatologists from the United States and four other European countries at a September 2006 international meeting sponsored by the World Health Organization Collaborating Center in Reproductive (...) Health of Atlanta (currently, the Global Collaborating Center in Reproductive Health). Responses to the case varied by country, due to differences in legal, ethical and related practice parameters, rather than differences in medical technology, as similar medical technology was available within each country. Variations in approach seemed to stem from physicians’ perceptions of their ability to remove the neonate from life support if this appeared non-beneficial. There appears to be a desire for greater convergence in practice options and more open discussion regarding the practical problems underlying the variability. Specifically, the conference attendees identified four areas that need to be addressed: (1) lack of international consensus guidelines in viability and therapeutic options, (2) lack of bodies capable of generating these guidelines, (3) variation in laws between countries, and (4) the frequent failure of physicians and families to confront death at the beginning of life. (shrink)

Measures are designed to evaluate the processes and outcomes of care associated with the delivery of clinical (and non-clinical) services. They allow for intra- and interorganizational comparison to be used continuously to improve patient health outcomes. The use of performance measures always means to abstract the complex reality (medical scenarios and procedures) in order to provide an understandable and comparable output. Measures can focus on global performance. The more detailed data are available the more specific judgements with respect to (...) the appropriateness of clinical decision-making and implementation of evidence are feasible. Externally reported measures are intended both to inform and lead to action. By providing this information, deficiencies in patient care and unnecessary variations in the care process can be uncovered. Such variations have contributed to disparities in morbidity and mortality. The developments in information technology, especially world-wide interconnectivity, standards for electronic data exchange and facilities to store and manage large amounts of data, offer the opportunity to analyse health-relevant information in order to make the delivery of healthcare services more transparent for consumers and providers. Global performance measures, such as the overall life expectancy (mortality) in a country, can give a rough orientation of how well health systems perform but they do not offer general solutions nor spe-cific insights into care processes that have to be improved. In contrast to population-based measures, case-based performance measures use a defined group of patients depending on specific patient characteristics and features of disease. By means of these measures we are able to compare the number of patients that receive a necessary medical procedure against those patients who do not. The use of case-based measures is a bottom-up approach to improve the overall performance in the long run. They are not only a tool for global orientation but can offer a straightforward link to the areas of deficient care and the underlying procedures. Performance measures are relevant to providers as well as consumers, from their own individual perspective. Cased-based measures focus on the management of individual patient. This approach to performance measurement can inform physicians in a meaningful and constructive way by monitoring their individual performance and by pointing out possible areas of improvement. (shrink)

Ethical research conduct is a cornerstone of research practice particularly when research participants include vulnerable populations. This study mapped the extent of reporting ethical research practices in studies conducted among refugees and war-affected populations in the Arab World, and assessed variations by time, country of study, and study characteristics. An electronic search of eight databases resulted in 5668 unique records published between 2000 and 2013. Scoping review yielded 164 eligible articles for analyses. Ethical research practices, including obtaining institutional approval, (...) access to the community/research site, and informed consent/assent from the research participants, were reported in 48.2, 54.9, and 53.7% of the publications, respectively. Institutional approval was significantly more likely to be reported when the research was biomedical in nature compared to public health and social, when the study employed quantitative compared to qualitative or mixed methodologies, and when the journal required a statement on ethical declarations. Institutional approval was least likely to be reported in papers that were sole-authored, when these did not mention a funding source, or when published in national journals. Similar results were obtained for access to the community site and for seeking informed consent/assent from study participants. The responsibility of inadequacies in adherence to ethical research conduct in crisis settings is born by a multitude of stakeholders including funding agencies, institutional research boards, researchers and international relief organizations involved in research, as well as journal editors, all of whom need to play a more proactive role for enhancing the practice of ethical research conduct in conflict settings. (shrink)

Children with innate variations of sex characteristics (also termed differences of sex development or intersex traits) are routinely subjected to medical interventions that aim to make their bodies appear or function more typically female or male. Many such interventions lack clear evidence of benefit, they have been challenged for thirty years, and they are now understood to violate children’s rights to bodily autonomy and bodily integrity. In this paper I argue that these persist in part due to epistemic injustices (...) and biomedical authority. Epistemic injustices include limited disclosure of current practices, the systemic marginalisation of community voices and psychosocial professionals, and attempts to discredit or misrepresent testimony. Bioethics has largely failed to change medical practice, and sometimes plays a role in perpetuating epistemic injustices. I find that the development of an intersex movement provides opportunities for epistemic justice and liberation by engaging with other disciplines and promoting oversight of medical decision-making. The paper draws particularly on Australian sources, including internationally influential ethical principles. (shrink)

Clinical and research practices designed by developed countries are often implemented in host nations of the Third World. In recent years, a number of papers have presented a diversity of arguments to justify these practices which include the defence of research with placebos even though best proven treatments exist; the distribution of drugs unapproved in their country of origin; withholding of existing therapy in order to observe the natural course of infection and disease; redefinition of equipoise to a more bland (...) version, and denial of post-trial benefits to research subjects. These practices have all been prohibited in developed, sponsoring countries, even though they invariably have pockets of poverty where conditions comparable to the Third World prevail. Furthermore, the latest update of the Declaration of Helsinki clearly decries double ethical standards in research protocols. Under these circumstances, it does not seem appropriate that First World scholars should propose and defend research and clinical practices with less stringent ethical standards than those mandatory in their own countries. Recent years have witnessed frequent reports of less stringent ethical standards being applied to both clinical and research medical practices, for the most part in the field of drug trials and drug marketing, initiated by developed countries in poorer nations. Still more unsettling, a number of articles have endorsed the policy of employing ethical norms in these host countries, which would be unacceptable to both the legislations and the moral standards of the sponsor nations. Also, these reformulations often contravene the Declaration of Helsinki or one of its updates. This paper is not so much concerned with the actual practices, which have been subjected to frequent scrutiny and publicly decried when gross misconduct occurred. Rather, my concern relates to the approval and support such practices have found in the literature on bioethics from authors who might be expected to use their energy and scholarship to explore and endorse the universalisability of ethics rather than to develop ad hoc arguments that would allow exceptions and variations from accepted moral standards. To this purpose, issue will be taken with arguments in three fields: medical and pharmaceutical practices, research strategies, and local application of research results. (shrink)

This article develops loneliness as a political and social justice issue by illustrating the harmful personal and social consequences of the medical jurisdiction over and constitution of variations in sex characteristics. Whilst connections between loneliness, health and illness have been well established, this work customarily identifies the ways illness can lead to, or be caused by, loneliness. Instead, I provide an account of the central role of medicalisation and medical management in producing loneliness. By doing so, I underline (...) the imperative for medical practice to consider its influence upon social and personal, as well as physical, wellbeing. Drawing on stories shared through solicited diaries followed by in-depth interviews with seven people with sex variations and two parents in the UK, I show how accounts of loneliness help to illuminate the violence of abandonment, silencing and marginalisation that often goes unheard, together with hidden or normalised systems of harm. Building on concepts of ethical loneliness and ontological loneliness, I show how structural violations operate to injure trust and self-worth, leading to social unease. I argue for the importance of people with sex variations finding sites of comfort and acceptance, but note the ways that some forms of medicalisation can inhibit alliances and community formation, despite diagnoses also carrying the potential to facilitate informal support structures and collective identities. By bringing together intersex studies with discourses of loneliness, I develop a better understanding of loneliness as a product of social and systemic violence, and the ways in which medical discourses tie in with larger structures of oppression, coercion and control. This article concludes by underlining the need for structural change in our approach to and understanding of sex variations, and with a call for us to become more attentive to these stories of medical harm, to ensure that they are heard and to seek necessary justice. (shrink)

We conducted focus groups to assess patient attitudes toward research on medical practices in the context of usual care. We found that patients focus on the implications of this research for their relationship with and trust in their physicians. Patients view research on medical practices as separate from usual care, demanding dissemination of information and in most cases, individual consent. Patients expect information about this research to come through their physician, whom they rely on to identify and filter (...) associated risks. In general, patients support this research, but worry that participation in research involving randomization may undermine individualized care that acknowledges their unique medical histories. These findings suggest the need for public education on variation in practice among physicians and the need for a collaborative approach to the governance of research on medical practices that addresses core values of trust, transparency, and partnership. (shrink)

This study examined variation in medical practitioners’ practice-based conceptions of what it means to be a doctor, based on interviews with 30 clinicians who were also medical educators. Participants included general practitioners, surgeons and physicians (non-surgical specialists). Participants were asked to draw a concept map of ‘being a doctor’, followed by semi-structured interviews using a phenomenographic research design. Three conceptions were identified, varyingly focused on (1) treating patients’ medical problems; (2) maximising patients’ well-being; and (3) (...) maximising community health. Each conception was distinguished by variation in awareness of six underlying dimensions of being a doctor: (1) doctors’ actions; (2) treatment success; (3) patients’ actions; (4) patients’ well-being; (5) community needs; and (6) social justice. Whilst all participants included dimensions 1 and 2 in their described practice, numerous participants did not include dimensions 3 and 4, i.e. did not take the patients’ role and the impact of patients’ psychosocial context into account in their practice. This is concerning, especially amongst medical educators, given the widely acknowledged importance of patient-centred care in medical practice. Similarly, only some of the participants considered community health needs and felt a broader social responsibility beyond their responsibility to individual patients. These findings highlight aspects of the medical profession that need to be further emphasised in medical training and continuing professional development. (shrink)

The Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association, currently in its fourth edition and considered the reference for the characterization and diagnosis of mental disorders, has undergone various developments since its inception in the mid-twentieth century. With the fifth edition of the DSM presently in field trials for release in 2013, there is renewed discussion and debate over the extent of its relative successes - and shortcomings - at iteratively incorporating scientific evidence on the often ambiguous nature (...) and etiology of mental illness. Given the power that the DSM has exerted both within psychiatry and society at large, this essay seeks to analyze variations in content and context of various editions of the DSM, address contributory influences and repercussion of such variations on the evolving landscape of psychiatry as discipline and practice over the past sixty years. Specifically, we document major modifications in the definition, characterization, and classification of mental disorders throughout successive editions of the DSM, in light of shifting trends in the conceptualization of psychopathology within evolving schools of thought in psychiatry, and in the context of progress in behavioral and psychopharmacological therapeutics over time. We touch upon the social, political, and financial environments in which these changes took places, address the significance of these changes with respect to the legitimacy (and legitimization) of what constitutes mental illness and health, and examine the impact and implications of these changes on psychiatric practice, research, and teaching. We argue that problematic issues in psychiatry, arguably reflecting the large-scale adoption of the DSM, may be linked to difficulties in formulating a standardized nosology of psychopathology. In this light, we highlight 1) issues relating to attempts to align the DSM with the medical model, with regard to increasing specificity in the characterization of discrete mental disease entities and the incorporation of neurogenetic, neurochemical and neuroimaging data in its nosological framework; 2) controversies surrounding the medicalization of cognition, emotion, and behavior, and the interpretation of subjective variables as 'normal' or 'abnormal' in the context of society and culture; and 3) what constitutes treatment, enablement, or enhancement - and what metrics, guidelines, and policies may need to be established to clarify such criteria. (shrink)

National attention on issues of public health preparedness necessarily brings into sharp focus the question of how to assure adequate, community-wide health care financing for preventive, acute care, and long-term medical care responses to public health threats. In the U.S., public and private health insurance represents the principal means by which medical care is financed. Beyond the threshold challenge of the many persons without any, or a stable form of, coverage lie challenges related to the structure and characteristics (...) of health insurance itself, particularly the commercial industry and its newly emerging market of consumer-driven health plans. States vary significantly in how they approach the regulation of insurance and in their willingness to support various types of insurance markets. This variation is attributable to the size and robustness of the insurance market, the political environment, and regulatory tradition and custom. Reconciling health insurance markets with public health-related health care financing needs arising from public health threats should be viewed as a major dimension of national health reform. (shrink)

A central issue in the ethical debate on psychopharmacological enhancers concerns the distinction between therapy and enhancement. Although from a theoretical point of view it is difficult to make a clear-cut distinction between treatment on the one hand, and enhancement on the other, in medical practice and policy debates the counter-positioning of therapy to enhancement is clearly at work. Especially pharmaceutical companies have an interest in occupying the "grey" area between normal and abnormal, treatment and enhancement. This article (...) discusses the dynamics of the treatment-enhancement distinction, and argues that practices that could be labelled "enhancement" can also be understood in terms of medicalisation and "disease mongering". The argument is supported by results from a qualitative empirical study into the experiences and opinions of adults diagnosed with Attention Deficit Hyperactivity Disorder. Patients are ambivalent about how to understand ADHD: as a disease, a disorder or a normal variation. Intervention with psychopharmacological means can also be understood in different ways. From an insider perspective it is conceived of as a "normalising" of functioning, whereas from an outsider perspective it can be understood as medicalisation of underperformance, or indeed as performance enhancement. This draws attention to new moral issues which are important but under-recognised in the enhancement debate, and which are related to medicalisation. (shrink)

Research studies demonstrate wide variation in how physicians diagnose and treat patients with similar medical conditions and suggest that at least some of the variation reflects inefficiencies and unnecessary medical costs. Health care researchers are actively examining ways to reduce variations in practice through standardization of medicine to reduce the cost of treatment and ensure the quality of outcomes. The most widely accepted form of this standardization is Evidence Based Best Practices. Furthermore, financial health care (...) providers such as hospitals and managed care organizations are investigating methods to tie resource usage to medical protocols in their efforts to monitor and control health care costs. Such proposals are contentious because they report on physicians' medical practice behaviors and such reports could potentially be used to influence their clinical behaviors. The intent of this exploratory study was to examine physicians' perceptions about linking a standard costing system to EBBP guidelines. The authors interviewed nine practicing physicians asking each physician to respond to the question, 'As a physician working in a hospital environment, what are your reactions to and concerns with combining standard costing techniques with EBBP?' The interviews were in-depth and free form in nature. The physicians' responses were recorded and analyzed using Grounded Theory Methodology. Using this methodology the field data was categorized into two major themes. The most important theme centered on ethics and the second theme was concerned with the implementation and use of a standard cost system in regard to EBBP. If physicians' worries about ethical dilemmas and implementation issues are not resolved, then it is likely that doctors would be unwilling to participate in any efforts to develop or use a standard cost-reporting system in medicine. While this study was exploratory in nature, it should provide future guidance to accountants, health care researchers and health care providers about physicians' issues with the use of standard costing methods in medicine. (shrink)