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.

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.

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.

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.

[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.

Pediatric deceased donor renal transplantation: An approach to decision making II. Acceptability of a deceased donor kidney for a child, a snap decision at 3 AM.

Allocation of deceased donor kidneys is based on several criteria; however, the final decision to accept or reject the offered kidney is made by the potential recipient's transplant team (surgeon/nephrologist). Several considerations including assessment of the donor quality, the HLA match between the donor and the recipient, several recipient factors, the geographical location of the recipient, and the organ all affect the decision of whether or not to finally accept the organ for a particular recipient. This decision needs to be made quickly, often on the spot. Maximizing the benefit from this scarce resource raises difficult ethical issues. The philosophies of equity and utility are often competing. This article will discuss the several considerations for the pediatric nephrologist while accepting a deceased donor kidney for a particular pediatric patient.

Telemedicine as an ethics teaching tool for medical students within the nephrology curriculum.

A novel patient-centered approach was used to deliver ethics curriculum to medical students. Two medical school clinicians designed a telemedicine session linking their facilities (across 2 continents). The session, Exploring the Patient Experience Through Telemedicine: Dialysis and End-Stage Renal Disease, allowed second-year medical students to explore various parameters of quality of life experienced by dialysis patients. A panel of 4 medical students interviewed a dialysis patient via Skype video connection between the medical school and the hospital's dialysis unit. Interview questions were adapted from the Kidney Disease Quality of Life instrument. During the live video-streamed interview, the remaining 23 second-year medical students observed the session. Afterward, the 23 were offered a voluntary anonymous online feedback survey (15 responded). The 4 panelists submitted narrative responses to 2 open-ended questions about their experience. All 15 responding students "Strongly agreed" or "Agreed" that the session was an aid to their professionalism skills and behaviors; 14 of 15 "Strongly agreed" or "Agreed" that telemedicine technology contributed to their understanding of the topic; 12 of 15 "Strongly agreed" that the session improved their understanding of the psychosocial burdens of dialysis, quality of life, and human suffering, and increased their empathy toward patients; and 12 of 15 "Strongly agreed" or "Agreed" that the session encouraged reflective thinking and was an aid to improving their communication skills. Telemedicine can be an effective and feasible method to deliver an ethics curriculum with a patient-centered approach. Additionally, the cross-cultural experience exposes students to additional contextual features of medicine.

Case management and the new nephrology social worker.

Case management is thought to be an effective way to offer counseling services and integrate the coordination of other services 4 into an efficient care delivery model. Through communication, collaboration and outcome-driven interventions, nephrology social workers can make a difference in health risk behaviors through case management.

Primary hyperoxaluria type 1: practical and ethical issues.

Primary hyperoxaluria type 1 (PH1) is a rare inborn error of glyoxylate metabolism of autosomal recessive inheritance, leading to progressive systemic oxalate storage (named 'oxalosis') with a high rate of morbidity and mortality, as well as an unacceptable quality of life for most patients. The adverse outcome, however, is partly due to issues that can be overcome. First, the diagnosis of PH is often delayed due to a general lack of knowledge of the disease among physicians. This accounts specifically for patients with pyridoxine sensitive PH, a group that is paradoxically most easy to treat. Second, lack of adherence to a strict conduction of conservative treatment and optimal urological management may enhance an adverse outcome of the disease. Third, specific techniques to establish PH1 and specific therapies are currently often not available in several low-resources countries with a high prevalence of PH. The management of patients with advanced disease is extremely difficult and warrants a tailor-made approach in most cases. Comprehensive programs for education of local physicians, installation of national centers of expertise, European support of low-resources countries for the management of PH patients and intensified international collaboration on the management of current patients, as well as on conduction of clinical studies, may further improve outcome of PH.

When enough is enough: the nephrologist's responsibility in ordering dialysis treatments.

For more than 20 years, nephrologists have been reporting that they are increasingly being expected to dialyze patients whom they believe may receive little benefit from dialysis therapy. During this time, there has been substantial research about the outcomes of patients of differing ages and comorbid conditions requiring dialysis and the development of clinical practice guidelines for dialysis decision making based on research evidence, ethics, and the law. The importance of palliative medicine to the care of the patient throughout the continuum of kidney disease also has been recognized, and its application has been described. This article summarizes these advances and provides an approach for decision making and treatment for patients who are not likely to benefit from dialysis therapy.

Cherry picking in ESRD: an ethical challenge in the era of pay for performance.

In poorly designed pay-for-performance schemes in which case mix adjustments are not adequate, self-interest could lead nephrologists toward cherry picking dialysis patients. Cherry picking, however, is morally problematic. First, it may manifest itself as a subtle form of covert rationing which threatens to undermine patient trust. Second, it involves shifting the burden of caring for sicker (and less financially attractive) patients to other nephrologists and dialysis units that do not practice cherry picking, creating injustices in the health care system. Finally, it treats patients as mere means through which nephrologists achieve reimbursement instead of as persons possessing dignity and deserving of respect.

Feeling trapped and being torn: physicians' narratives about ethical dilemmas in hemodialysis care that evoke a troubled conscience.

BACKGROUND: This study is part of a major study about difficulties in communicating ethical problems within and among professional groups working in hemodialysis care. Describing experiences of ethically difficult situations that induce a troubled conscience may raise consciousness about ethical problems and thereby open the way to further reflection.The aim of this study was to illuminate the meanings of being in ethically difficult situations that led to the burden of a troubled conscience, as narrated by physicians working in dialysis care. METHOD: A phenomenological hermeneutic method was used to analyze the transcribed narrative interviews with five physicians who had varying lengths of experience in nephrology. RESULTS: The analysis shows that physicians working in hemodialysis care suffered from a troubled conscience when they felt torn by conflicting demands and trapped in irresolution. They faced ethical dilemmas where they were forced to make crucial decisions about life or death, or to prioritize when squeezed between time restraints and professional and personal demands. In these ethical dilemmas the physicians avoided arousing conflicts, were afraid of using their authority, were burdened by moral responsibility and felt devalued and questioned about their way of handling the situation. The findings point to another way of encountering ethical dilemmas, being guided by their conscience. This mean sharing the agony of deciding how to act, being brave enough to bring up the crucial problem, feeling certain that better ways of acting have not been overlooked, being respected and confirmed regarding decisions made. CONCLUSION: The meanings of being in ethically difficult situations that led to the burden of a troubled conscience in those working in hemodialysis care, indicate the importance of increasing the level of communication within and among various professional groups--to transform being burdened by a troubled conscience into using conscience as a guide--in situations where no way of solving the problem seems to be good.

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.

Clinical research in pediatric nephrology: challenges, and strategies to address them.

There are many obstacles to conducting meaningful clinical research studies in children with kidney disease. This review describes some of the challenges facing clinical investigators in pediatric nephrology, and proposes strategies to overcome them. Four broad categories of challenges are considered: inadequate power, funding issues, ethical issues and practical barriers. Power is influenced not just by sample size, but also by population heterogeneity and the outcome chosen; these issues are discussed in detail. Ethical issues and practical barriers of particular relevance to pediatric studies are considered. Examples of successful multicenter studies are provided. In addition, some of the strengths and limitations of existing registry data are highlighted.