Moral Distress and Moral Injury in Nephrology During the COVID-19 Pandemic.

Across the world, challenges for clinicians providing health care during the coronavirus disease 2019 (COVID-19) pandemic are highly prevalent and have been widely reported. Perspectives of provider groups have conveyed wide-ranging experiences of adversity, distress, and resilience. In understanding and responding to the emotional and psychological implications of the pandemic for renal clinicians, it is vital to recognize that many experiences also have been ethically challenging. The COVID-19 pandemic has prompted rapid and extensive transformation of health care systems and widely impacted care provision, heightening the risk of barriers to fulfillment of ethical duties. Given this, it is likely that some clinicians also have experienced moral distress, which can occur if an individual is unable to act in accordance with their moral judgment owing to external barriers. This review presents a global perspective of potential experiences of moral distress in kidney care during the COVID-19 pandemic. Using nephrology cases, we discuss why moral distress may be experienced by health professionals when withholding or withdrawing potentially beneficial treatments owing to resource constraints, when providing care that is inconsistent with local prepandemic best practice standards, and when managing dual professional and personal roles with conflicting responsibilities. We argue that in addition to responsive and appropriate health system supports, resources, and education, it is imperative for health care providers to recognize and prevent moral distress to foster the psychological well-being and moral resilience of clinicians during extended periods of crisis within health systems.

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.

Conflicts of interest in dialysis: A barrier to policy reforms.

Conflicts of interest involving physicians are commonplace in the US, occurring across many different specialties and subspecialties in a variety of clinical settings. In nephrology, two important scenarios in which conflicts of interest arise are dialysis facility joint venture (JV) arrangements and financial participation in End-stage Kidney Disease Seamless Care Organizations (ESCOs). Whether conflicts of interest occurring in either of these settings influence decision-making or patient care outcomes is not known due to a lack of transparent, publicly available information, and opportunities to conduct independent study. We discuss possible benefits and risks of nephrologist's financial participation in JVs and ESCOs and possible mechanisms for disclosure and reporting of such arrangements as well as risk mitigation.

Moral Distress in Nephrology: Perceived Barriers to Ethical Clinical Care.

Moral distress occurs when individuals are unable to act in accordance with what they believe to be ethically correct or just. It results from a discrepancy between a clinician's perception of "the right thing to do" and what is actually happening and is perpetuated by perceived constraints that limit the individual from speaking up or enacting change. Moral distress is reported by many clinicians in caring for patients with serious illness, including chronic kidney disease and kidney failure. If left unidentified, unexpressed, or unaddressed, moral distress may cause burnout, exhaustion, detachment, and ineffectiveness. At an extreme, moral distress may lead to a desire to abandon the speciality entirely. This article offers an international perspective on moral distress in nephrology in diverse contexts and health care systems. We examine and discuss the sociocultural factors that contribute to moral distress in nephrology and offer suggestions for interventions from individual provider, facility, and health care systems perspectives to reduce the impact of moral distress on nephrology providers.

Towards precision nephrology: the opportunities and challenges of genomic medicine.

The expansion of genomic medicine is furthering our understanding of many human diseases. This is well illustrated in the field of nephrology, through the characterization, discovery, and growing insight into various renal diseases through use of Next Generation Sequencing (NGS) technologies. This review will provide an overview of the diagnostic opportunities of using genetic testing in the clinical setting by describing notable discoveries regarding inherited forms of renal disease that have advanced the field and by highlighting some of the potential benefits of establishing a molecular diagnosis in a clinical practice. In addition, it will discuss some of the challenges associated with the expansion of genetic testing into the clinical setting, including clinical variant interpretation and return of genetic results.

Controversy About Dialysis for an Adolescent.

For patients on dialysis, 1 frequent cause of death is their voluntary decision to discontinue dialysis. Such decisions raise complex questions when the patient is a competent adult. The decisions are even more complex when the patient is an adolescent. In this article, we present a case in which a 17-year-old adolescent decided that she no longer wished to undergo dialysis through her fistula. Her doctors thought that dialysis using any other technique would be too dangerous. Four experts in pediatric nephrology, bioethics, and palliative care discuss this decision and the different ways that the health care team might respond.

Time to Improve Informed Consent for Dialysis: An International Perspective.

The literature reveals that current nephrology practice in obtaining informed consent for dialysis falls short of ethical and legal requirements. Meeting these requirements represents a significant challenge, especially because the benefits and risks of dialysis have shifted significantly with the growing number of older, comorbid patients. The importance of informed consent for dialysis is heightened by several concerns, including: (1) the proportion of predialysis patients and patients on dialysis who lack capacity in decision making and (2) whether older, comorbid, and frail patients understand their poor prognosis and the full implications to their independence and functional status of being on dialysis. This article outlines the ethical and legal requirements for a valid informed consent to dialysis: (1) the patient was competent, (2) the consent was made voluntarily, and (3) the patient was given sufficient information in an understandable manner to make the decision. It then considers the application of these requirements to practice across different countries. In the process of informed consent, the law requires a discussion by the physician of the material risks associated with dialysis and alternative options. We argue that, legally and ethically, this discussion should include both the anticipated trajectory of the illness and the effect on the life of the patient with particular regard to the outcomes most important to the individual. In addition, a discussion should occur about the option of a conservative, nondialysis pathway. These requirements ensure that the ethical principle of respect for patient autonomy is honored in the context of dialysis. Nephrologists need to be open to, comfortable with, and skillful in communicating this information. From these clear, open, ethically, and legally valid consent discussions, a significant dividend will hopefully flow for patients, families, and nephrologists alike.

Orphan drug policies and use in pediatric nephrology.

Orphan drugs designed to treat rare diseases are often overpriced per patient. Novel treatments are sometimes even more expensive for patients with ultra-rare diseases, in part due to the limited number of patients. Pharmaceutical companies that develop a patented life-saving drug are in a position to charge a very high price, which, at best, may enable these companies to further develop drugs for use in rare disease. However, is there a limit to how much a life-saving drug should cost annually per patient? Government interventions and regulations may opt to withhold a life-saving drug solely due to its high price and cost-effectiveness. Processes related to drug pricing, reimbursement, and thereby availability, vary between countries, thus having implications on patient care. These processes are discussed, with specific focus on three drugs used in pediatric nephrology: agalsidase beta (for Fabry disease), eculizumab (for atypical hemolytic uremic syndrome), and cysteamine bitartrate (for cystinosis). Access to and costs of orphan drugs have most profound implications for patients, but also for their physicians, hospitals, insurance policies, and society at large, particularly from financial and ethical standpoints.

[Conflicts of interest in nephrology]. / Conflictos de intereses en nefrología.

Since doctors disposed of effective tools to serve their patients, they had to worry about the proper management of available resources and how to deal with the relationship with the industry that provides such resources. In this relation-ship, health professionals may be involved in conflicts of interest that they need to acknowledge and learn how to handle. This article discusses the conflicts of interest in nephrology. Its objectives are to identify those areas where such conflicts could occur; to help to solve them, always considering the best interest of patients; and to help health workers to keep in mind that they have to preserve their autonomy and professional integrity. Conflicts of interest of professionals in the renal area and related scientific societies, with the industry producing equipment, supplies and drugs are reviewed. Dichotomy, payment for referral, self-referral of patients and incentives for cost control are analyzed. Finally, recommendations to help preserve a good practice in nephrology are made.

Conflictos de intereses en nefrología / Conflicts of interest in nephrology

Since doctors disposed of effective tools to serve their patients, they had to worry about the proper management of available resources and how to deal with the relationship with the industry that provides such resources. In this relation­ship, health professionals may be involved in conflicts of interest that they need to acknowledge and learn how to handle. This article discusses the conflicts of interest in nephrology. Its objectives are to identify those areas where such conflicts could occur; to help to solve them, always considering the best interest of patients; and to help health workers to keep in mind that they have to preserve their autonomy and professional integrity. Conflicts of interest of professionals in the renal area and related scientific societies, with the industry producing equipment, supplies and drugs are reviewed. Dichotomy, payment for referral, self-referral of patients and incentives for cost control are analyzed. Finally, recommendations to help preserve a good practice in nephrology are made.

The Full Spectrum of Clinical Ethical Issues in Kidney Failure. Findings of a Systematic Qualitative Review.

BACKGROUND: When treating patients with kidney failure, unavoidable ethical issues often arise. Current clinical practice guidelines some of them, but lack comprehensive information about the full range of relevant ethical issues in kidney failure. A systematic literature review of such ethical issues supports medical professionalism in nephrology, and offers a solid evidential base for efforts that aim to improve ethical conduct in health care. AIM: To identify the full spectrum of clinical ethical issues that can arise for patients with kidney failure in a systematic and transparent manner. METHOD: A systematic review in Medline (publications in English or German between 2000 and 2014) and Google Books (with no restrictions) was conducted. Ethical issues were identified by qualitative text analysis and normative analysis. RESULTS: The literature review retrieved 106 references that together mentioned 27 ethical issues in clinical care of kidney failure. This set of ethical issues was structured into a matrix consisting of seven major categories and further first and second-order categories. CONCLUSIONS: The systematically-derived matrix helps raise awareness and understanding of the complexity of ethical issues in kidney failure. It can be used to identify ethical issues that should be addressed in specific training programs for clinicians, clinical practice guidelines, or other types of policies dealing with kidney failure.

A review of linked health data in Australian nephrology.

Linked health data bring together data about one person from varying sources such as administrative health datasets, death registries and clinical registries using a process that maintains patient privacy. Linked health data have been used for burden of disease estimates and health-care planning and is being increasingly use as a research methodology to study health service utilisation and patient outcomes. Within Australian nephrology, there has been limited understanding and use of linked health data so far, but we expect that with the increasing availability of data and the growing complexity of health care, the use of such data will expand. This is especially pertinent for the growing elderly population with advanced kidney disease, who are poorly represented in other types of research studies. This article summarizes the history of linked health data in Australia, the nature of available datasets in Australia, the methods of access to these data, privacy and ethical issues, along with strengths, limitations and implications for the future.

The Role of Time-Limited Trials in Dialysis Decision Making in Critically Ill Patients.

Technologic advances, such as continuous RRT, provide lifesaving therapy for many patients. AKI in the critically ill patient, a fatal diagnosis in the past, is now often a survivable condition. Dialysis decision making for the critically ill patient with AKI is complex. What was once a question solely of survival now is nuanced by an individual's definition of quality of life, personal values, and short- and long-term prognoses. Clinical evaluation of AKI in the critically ill is multifaceted. Treatment decision making requires consideration of the natural evolution of the patient's AKI within the context of the global prognosis. Situations are often marked by prognostic uncertainty and clinical unknowns. In the face of these uncertainties, establishment of patient-directed therapies is imperative. A time-limited trial of continuous RRT in this setting is often appropriate but difficult to execute. Using patient preferences as a clinical guide, a proper time-limited trial requires assessment of prognosis, elicitation of patient values, strong communication skills, clear documentation, and often, appropriate integration of palliative care services. A well conducted time-limited trial can avoid interprofessional conflict and provide support for the patient, family, and staff.