Frequency and Severity of Moral Distress in Nephrology Fellows: A National Survey.

INTRODUCTION: Moral distress is a negative affective response to a situation in which one is compelled to act in a way that conflicts with one's values. Little is known about the workplace scenarios that elicit moral distress in nephrology fellows. METHODS: We sent a moral distress survey to 148 nephrology fellowship directors with a request to forward it to their fellows. Using a 5-point (0-4) scale, fellows rated both the frequency (never to very frequently) and severity (not at all disturbing to very disturbing) of commonly encountered workplace scenarios. Ratings of ≥3 were used to define "frequent" and "moderate-to-severe" moral distress. RESULTS: The survey was forwarded by 64 fellowship directors to 386 fellows, 142 of whom (37%) responded. Their mean age was 33 ± 3.6 years and 43% were female. The scenarios that most commonly elicited moderate to severe moral distress were initiating dialysis in situations that the fellow considered futile (77%), continuing dialysis in a hopelessly ill patient (81%) and carrying a high patient census (75%), and observing other providers giving overly optimistic descriptions of the benefits of dialysis (64%). Approximately 27% had considered quitting fellowship during training, including 9% at the time of survey completion. CONCLUSION: A substantial majority of nephrology trainees experienced moral distress of moderate to severe intensity, mainly related to the futile treatment of hopelessly ill patients. Efforts to reduce moral distress in trainees are required.

Reflections on Charlie Gard and the Best Interests Standard From Both Sides of the Atlantic Ocean.

Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised £1.3 million (∼$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie's best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States.

Ethical challenges in nephrology: a call for action.

The American Society of Nephrology, the European Renal Association-European Dialysis and Transplant Association and the International Society of Nephrology Joint Working Group on Ethical Issues in Nephrology have identified ten broad areas of ethical concern as priority challenges that require collaborative action. Here, we describe these challenges - equity in access to kidney failure care, avoiding futile dialysis, reducing dialysis costs, shared decision-making in kidney failure care, living donor risk evaluation and decision-making, priority setting in kidney disease prevention and care, the ethical implications of genetic kidney diseases, responsible advocacy for kidney health and management of conflicts of interest - with the aim of highlighting the need for ethical analysis of specific issues, as well as for the development of tools and training to support clinicians who treat patients with kidney disease in practising ethically and contributing to ethical policy-making.

[Susceptibility genetics of common conditions in clinical practice]. / Des tests génétiques pour prédire des maladies communes.

The genetic tests for "non-rare thrombophilias" (TNR) were introduced into clinical setting immediately after the identification of genetic variants in the mid-90s to predict and prevent venous thromboembolism (VTE). Although being a rare example of a genetic test of susceptibility for complex diseases that has been integrated in medical routine, it is the most widespread post-natal genetics inquiry in France nowadays. Yet, determining whom to test and how to use the results is still controversial. This article outlines the trajectory of its clinical regulation and illustrates the importance of the context of use to understand its diffusion. This analysis is intended to feed a more general reflection on the issues raised by the clinical integration of genetic surveys for common diseases, particularly with regard to the clinical utility of a test (statistical vs. biological), the subjects to be tested (the case index and/or her/his relatives), and the criteria underlying access to these tests (modalities of medico-economic assessment).

TITLE: Des tests génétiques pour prédire des maladies communes. ABSTRACT: Introduit au lendemain de l'identification des « thrombophilies non rares ¼ (TNR), au milieu des années 1990 afin de prédire et de prévenir la maladie thromboembolique veineuse (MTEV), le bilan génétique pour ces thrombophilies est un exemple assez rare de test génétique de susceptibilité pour une maladie complexe, à avoir franchi le pas d'un véritable usage de routine en clinique. Bien que ce test soit le plus répandu des tests de génétique post-natale en France, son usage (À qui proposer le test ? Que faire des résultats ?) fait encore l'objet de débats. Cet article analyse la trajectoire de régulation clinique de ce test et illustre l'importance du contexte spécifique d'usage pour comprendre sa diffusion. Cette analyse vise à nourrir une réflexion plus générale sur les enjeux que pose l'intégration clinique des tests génétiques pour les maladies communes, en considérant notamment les modalités de définition de l'utilité clinique d'un test (statistique versus biologique), des sujets du test (le cas index versus ses apparentés), et des critères en sous-tendant l'accès (modalités des calculs médico-économiques).

[Bioethics theories, the protection of life and natural law]. / Teorías bioéticas, protección de la vida y ley natural.

Principlist Bioethics by Beauchamp and Childress has reached a prominent status in contemporary Bioethics. Nevertheless, it includes some important theoretical problems: some lacks when defining some concepts, a tendency to ethical relativism, etc. Among the ethical alternative approaches from which such problems can be solved, we think that the most appropiate is the Natural Law theory. It offers a reasoned reflection on the concept of good and on human basic goods and their relation with moral general principles. From such goods, this ethical theory supports the existence of actions that are always maleficent acts, that is, intrinsically and universally evil acts. The article applies the Natural Law theory to issues related to the protection of human life (abortion, euthanasia, self-defense and genetic manipulation)..

How Should Decision Science Inform Scarce Blood Product Allocation?

Blood products are a scarce resource in our health care system. This article discusses a pediatric case involving large quantities of blood products transfused at the end of life. It argues that decision aids could help clinicians determine when to request ethics consultation or re-evaluation of blood product usage in a specific patient care situation and considers questions about scarce resource allocation, futility, and parental involvement in decision making.

Doctors' perceptions of how resource limitations relate to futility in end-of-life decision making: a qualitative analysis.

OBJECTIVE: To increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility. SETTING: Three tertiary hospitals in metropolitan Brisbane, Australia. DESIGN: Qualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed using thematic analysis. RESULTS: Doctors' perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing. CONCLUSIONS: Doctors' ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors' role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making.

When Not to Rescue: An Ethical Analysis of Best Practices for Cardiopulmonary Resuscitation and Emergency Cardiac Care.

It is now a default obligation to provide cardiopulmonary resuscitation (CPR), in the absence of knowledge of a patient's or surrogate's wishes to the contrary. We submit that it is time to re-evaluate this position. Attempting CPR should be subject to the same scrutiny demanded of other medical interventions that involve balancing a great benefit against grievous harms.

Should doctors provide futile medical treatment if patients or their proxies are prepared to pay for it?

Ethically and legally doctors are not obliged to provide futile treatment to patients, even if the patient or their proxies are prepared to pay for it. However, it may be justified where such treatment is harmless and has a placebo effect. In deciding about a request for futile treatment, doctors should be guided by the ethical principles of patient autonomy, beneficence, non-maleficence and justice. Guidelines are provided to assist doctors in making such decisions. Where futile treatment is withdrawn or refused, palliative care must always be offered. If it isdecided to withdraw or refuse treatment, the patient or their proxy should be given the opportunity to contact another practitioner or institution that may be prepared to offer such treatment.

The Need for an Effective Process to Resolve Conflicts Over Medical Futility: A Case Study and Analysis.

The issue of medical futility requires a well-defined process in which both sides of the dispute can be heard and a resolution reached in a fair and ethical manner. Procedural approaches to medical futility cases provide all parties involved with a process-driven framework for resolving these disputes. Medical paternalism or the belief in the absolute rightness of the medical model will not serve to resolve these disputes. Although medical futility is first determined by medicine, in order for the determination to meet legal criteria, it must be subject to review. The hope is that through a review process that meets legal criteria, the issue can be resolved without the need for court proceedings. If resolution cannot be obtained through this process, surrogates still have the right to seek court intervention. This issue is of relevance and importance in critical care nursing because of the role and position of critical care nurses, who have direct contact with patients and patients' families, the potential for moral distress in cases of possibly futile treatment, and the expanding roles of nurses, including critical care nurses and advanced practice nurses, in management and policy development.

Reason-Giving and Medical Futility: Contrasting Legal and Social Discourse in the United States With the United Kingdom and Ontario, Canada.

Disputes regarding life-prolonging treatments are stressful for all parties involved. These disagreements are appropriately almost always resolved with intensive communication and negotiation. Those rare cases that are not require a resolution process that ensures fairness and due process. We describe three recent cases from different countries (the United States, United Kingdom, and Ontario, Canada) to qualitatively contrast the legal responses to intractable, policy-level disputes regarding end-of-life care in each of these countries. In so doing, we define the continuum of clinical and social utility among different types of dispute resolution processes and emphasize the importance of public reason-giving in the societal discussion regarding policy-level solutions to end-of-life treatment disputes. We argue that precedential, publicly available, written rulings for these decisions most effectively help to move the social debate forward in a way that is beneficial to clinicians, patients, and citizens. This analysis highlights the lack of such rulings within the United States.

Physician-assisted dying and two senses of an incurable condition.

It is commonly accepted that voluntary active euthanasia and physician-assisted suicide can be allowed, if at all, only in the cases of patients whose conditions are incurable. Yet, there are different understandings of when a patient's condition is incurable. In this article, I consider two understandings of the notion of an incurable condition that can be found in the recent debate on physician-assisted dying. According to one of them, a condition is incurable when it is known that there is no cure for it. According to the other, a condition is incurable when no cure is known to exist for it. I propose two criteria for assessing the conceptions and maintain that, in light of the criteria, the latter is more plausible than the former.

Can I trust them to do everything? The role of distrust in ethics committee consultations for conflict over life-sustaining treatment among Afro-Caribbean patients.

BACKGROUND: Distrust in the American healthcare system is common among Afro-Caribbeans but the role of this distrust in conflict over life-sustaining treatment is not well described. OBJECTIVE: To identify the ways that distrust manifests in ethics committee consultation for conflict over life-sustaining treatment among Afro-Caribbean patients. METHODS: This was a retrospective cohort study at a large academic hospital of all ethics committee consultations for life-sustaining treatment among Afro-Caribbean patients and their surrogates. We reviewed medical records and identified cases in which ethics consultants described distrust as playing a role in the conflict over life-sustaining treatment. RESULTS: Of the 169 ethics committee consultation cases for conflict over life-sustaining treatment, 11 (6.5%) involved patients who self-identified as Afro-Caribbean. Distrust played a role in several of these cases, with surrogates of three patients, in particular, illustrating the way that perceived heath disparities, past labelling and concerns about continued maltreatment generated distrust leading to conflict over life-sustaining treatment. CONCLUSIONS: Exploring issues of distrust may help ethics consultants identify the source of conflict over life-sustaining treatment among Afro-Caribbean patients.

The Ethics of Continued Life-Sustaining Treatment for those Diagnosed as Brain-dead.

Given the long-standing controversy about whether the brain-dead should be considered alive in an irreversible coma or dead despite displaying apparent signs of life, the ethical and policy issues posed when family members insist on continued treatment are not as simple as commentators have claimed. In this article, we consider the kind of policy that should be adopted to manage a family's insistence that their brain-dead loved one continues to receive supportive care. We argue that while it would be ethically inappropriate to continue to devote scarce acute care resources to such patients in a hospital setting, it may not be ethically inappropriate for patients to receive these resources in certain other settings. Thus, if a family insists on continuing to care for their brain-dead loved at their home, we should not, from a policy perspective, interfere with the family's wishes. We also argue that healthcare professionals should make some effort to facilitate the transfer of brain-dead patients to these other settings when families insist on continued treatment despite being informed about the lack of any potential for recovery of consciousness. Our arguments are strengthened by the fact that patients in a persistent vegetative state, who, when correctly diagnosed, also have no potential for recovery of consciousness, are routinely transferred from hospitals to nursing homes or long-term care facilities where they continue to be ventilated, tube fed and to receive other supportive care. We also briefly explore the question of who should be responsible for the costs of such treatment at the long-term care facility.

[Controversy in the treatment of a critically ill neonate in a rural health service]. / Controversias sobre el tratamiento de un neonato críticamente enfermo en un servicio de salud rural.

Cardiopulmonary resuscitation of newborns with perinatal hypoxia faces serious ethical, moral, medical and legal problems, particularly in rural areas. Ethical and moral issues have to do with the medical-parents relationship; with values, preferences and priorities of each of these groups; and with the scarce resources situation. Medical-technical problems are related to asphyxia complications, and their prognostic and therapeutic implications. Legal considerations arising from the fact of killing or letting die. In this article is analyzed the real case of a neonate with severe perinatal hypoxia in order to enhance the understanding of the incorporation of ethics in everyday clinical practice.

La reanimación cardiopulmonar de recién nacidos con hipoxia perinatal grave enfrenta problemas éticos, morales, médicos y legales, particularmente en áreas rurales. Los problemas éticos y morales tienen que ver con la relación médico-padres; con los valores, preferencias y prioridades de cada uno de estos grupos, y con la situación de la escasez de recursos. Los problemas técnico-médicos están relacionados con las complicaciones relacionadas a la asfixia, así como con sus implicaciones pronósticas y terapéuticas. Mientras que las consideraciones legales derivan del hecho de matar o dejar morir. En este artículo se discute el caso real de un neonato con asfixia perinatal grave con el propósito de fortalecer el entendimiento de la incorporación de la ética de la práctica clínica cotidiana.

How to Retain the Trust of Patients and Families When We Will Not Provide the Treatment They Want.

How might clinicians best try to retain the trust of patients and family members after clinicians oppose giving a treatment? If clinicians can maintain the trust of patients and families in these situations, this may soften what may be the greatest possible loss--the death of a loved one. I discuss what clinicians seeking to retain trust should not do--namely impose their values and reason wrongly--and introduce strategies that clinicians may use to reduce both. I present five principles that clinicians can follow to try to retain trust, with examples that illustrate each. I suggest specific interventions that clinicians can make, especially when they anticipate that a patient and/or family may, in time, want a treatment that is futile.

Patient-satisfaction surveys on a scale of 0 to 10: improving health care, or leading it astray?

Patient-satisfaction surveys can call attention to the importance of treating patients with dignity and respect, but good ratings depend more on manipulable patient perceptions than on good medicine. In fact, the pressure to get good ratings can lead to bad medicine.