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.

Balancing the Needs of Acute and Maintenance Dialysis Patients during the COVID-19 Pandemic: A Proposed Ethical Framework for Dialysis Allocation.

The COVID-19 pandemic continues to strain health care systems and drive shortages in medical supplies and equipment around the world. Resource allocation in times of scarcity requires transparent, ethical frameworks to optimize decision making and reduce health care worker and patient distress. The complexity of allocating dialysis resources for both patients receiving acute and maintenance dialysis has not previously been addressed. Using a rapid, collaborative, and iterative process, BC Renal, a provincial network in Canada, engaged patients, doctors, ethicists, administrators, and nurses to develop a framework for addressing system capacity, communication challenges, and allocation decisions. The guiding ethical principles that underpin this framework are (1) maximizing benefits, (2) treating people fairly, (3) prioritizing the worst-off individuals, and (4) procedural justice. Algorithms to support resource allocation and triage of patients were tested using simulations, and the final framework was reviewed and endorsed by members of the provincial nephrology community. The unique aspects of this allocation framework are the consideration of two diverse patient groups who require dialysis (acute and maintenance), and the application of two allocation criteria (urgency and prognosis) to each group in a sequential matrix. We acknowledge the context of the Canadian health care system, and a universal payer in which this framework was developed. The intention is to promote fair decision making and to maintain an equitable reallocation of limited resources for a complex problem during a pandemic.

Emergency-Only Hemodialysis Policies: Ethical Critique and Avenues for Reform.

An estimated 6,500 undocumented immigrants in the United States have been diagnosed with end-stage renal disease (ESRD). These individuals are ineligible for the federal insurance program that covers dialysis and/or transplantation for citizens, and consequently are subject to local or state policies regarding the provision of healthcare. In 76% of states, undocumented immigrants are ineligible to receive scheduled outpatient dialysis treatments, and typically receive dialysis only when presenting to the emergency center with severe life-threatening symptoms. 'Emergency-only hemodialysis' (EOHD) is associated with higher healthcare costs, higher mortality, and longer hospitalizations. In this paper, we present an ethical critique of existing federal policy. We argue that EOHD represents a failure of fiduciary and professional obligations, contributes to moral distress, and undermines physician obligations to be good stewards of medical resources. We then explore potential avenues for reform based upon policies introduced at the state level. We argue that, while reform at the federal level would ultimately be a more sustainable long-term solution, state-based policy reforms can help mitigate the ethical shortcomings of EOHD.

The Hang Up.

Over the past year, our ethics service has had numerous consultations involving patients who use the emergency department for regular dialysis. Sometimes, they have access to outpatient hemodialysis that they forgo; other times, they've been "fired" from this kind of outpatient facility, and so the ED is their last option. In most of these cases, we're called because the patient is disruptive once admitted to the ICU and behavior plans haven't helped. But the call from a resident this March 2020 morning was different, the patient had end-stage renal disease and often missed hemodialysis, but he wasn't disruptive. "It's just that he comes in after using cocaine, and given scarcity with the coronavirus and ICU beds…." I have come to think that this is one of the more insidious effects of the pandemic: that there will be a resurgence of the view that some patients deserve health care by virtue of their compliant behavior and that those who are nonadherent don't.

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.

What Should We Learn From Early Hemodialysis Allocation About How We Should Be Using ECMO?

Early hemodialysis allocation deliberations should inform our current considerations of what constitutes reasonable uses of extracorporeal membrane oxygenation. Deliberative democracy can be used as a strategy to gather a plurality of views, consider criteria, and guide policy making.

Chronic Kidney Disease: The Complex History of the Organization of Long-Term Care and Bioethics. Why Now, More Than Ever, Action is Needed.

Chronic kidney disease (CKD) has been redefined in the new millennium as any alteration of kidney morphology, function, blood, or urine composition lasting for at least 3 months. This broad definition also encompasses diseases or conditions that are associated with normal kidney function, such as a kidney scarring from an acute pyelonephritis episode or a single kidney, as a result of kidney donation. CKD is a relevant public health problem. According to the 2015 Global Burden of Disease Study, it was the 12th leading cause of death, leading to 1.1 million deaths, worldwide, each year. The role of CKD as a cause of death is evident where renal replacement therapy (RRT) is not available, however, its role in increasing death risk is not easily calculated. RRT consumes about 3⁻5% of the global healthcare budget where dialysis is available without restrictions. While the prevalence of CKD is increasing overall as lifespans extend, being linked to diabetes, hypertension, obesity, and atherosclerosis, CKD is at least partly preventable and its effects may be at least partly counterbalanced by early and appropriate care. We will welcome papers on all aspects of CKD, including organization, cost, and models of care. Papers from developing countries will be particularly welcomed.

The strange case of Mr. H. Starting dialysis at 90 years of age: clinical choices impact on ethical decisions.

BACKGROUND: Starting dialysis at an advanced age is a clinical challenge and an ethical dilemma. The advantages of starting dialysis at "extreme" ages are questionable as high dialysis-related morbidity induces a reflection on the cost- benefit ratio of this demanding and expensive treatment in a person that has a short life expectancy. Where clinical advantages are doubtful, ethical analysis can help us reach decisions and find adapted solutions. CASE PRESENTATION: Mr. H is a ninety-year-old patient with end-stage kidney disease that is no longer manageable with conservative care, in spite of optimal nutritional management, good blood pressure control and strict clinical and metabolic evaluations; dialysis is the next step, but its morbidity is challenging. The case is analysed according to principlism (beneficence, non-maleficence, justice and respect for autonomy). In the setting of care, dialysis is available without restriction; therefore the principle of justice only partially applied, in the absence of restraints on health-care expenditure. The final decision on whether or not to start dialysis rested with Mr. H (respect for autonomy). However, his choice depended on the balance between beneficence and non-maleficence. The advantages of dialysis in restoring metabolic equilibrium were clear, and the expected negative effects of dialysis were therefore decisive. Mr. H has a contraindication to peritoneal dialysis (severe arthritis impairing self-performance) and felt performing it with nursing help would be intrusive. Post dialysis fatigue, poor tolerance, hypotension and intrusiveness in daily life of haemodialysis patients are closely linked to the classic thrice-weekly, four-hour schedule. A personalized incremental dialysis approach, starting with one session per week, adapting the timing to the patient's daily life, can limit side effects and "dialysis shock". CONCLUSIONS: An individualized approach to complex decisions such as dialysis start can alter the delicate benefit/side-effect balance, ultimately affecting the patient's choice, and points to a narrative, tailor-made approach as an alternative to therapeutic nihilism, in very old and fragile patients.

Area-level poverty, race/ethnicity & dialysis star ratings.

The Centers for Medicare and Medicaid Services recently released a five star rating system as part of 'Dialysis Facility Compare' to help patients identify and choose high performing clinics in the US. Eight dialysis-related measures determine ratings. Little is known about the association between surrounding community sociodemographic characteristics and star ratings. Using data from the U.S. Census and over 6000 dialysis clinics across the country, we examined the association between dialysis clinic star ratings and characteristics of the local population: 1) proportion of population below the federal poverty level (FPL); 2) proportion of black individuals; and 3) proportion of Hispanic individuals, by correlation and regression analyses. Secondary analyses with Quality Incentive Program (QIP) scores and population characteristics were also performed. We observed a negligible correlation between star ratings and the proportion of local individuals below FPL; Spearman coefficient, R = -0.09 (p<0.0001), and a stronger correlation between star ratings and the proportion of black individuals; R = -0.21 (p<0.0001). Ordered logistic regression analyses yielded adjusted odds ratio of 0.91 (95% confidence interval [0.80-1.30], p = 0.12) and 0.55 ([0.48-0.63], p<0.0001) for high vs. low level of proportion below FPL and proportion of black individuals, respectively. In contrast, a near-zero correlation was observed between star ratings and the proportion of Hispanic individuals. Correlations varied substantially by country region, clinic profit status and clinic size. Analyses using clinic QIP scores provided similar results. Sociodemographic characteristics of the surrounding community, factors typically outside of providers' direct control, have varying levels of association with clinic dialysis star ratings.

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.

Ethical issues in dialysis therapy.

Treatment for end-stage kidney disease is a major economic challenge and a public health concern worldwide. Renal-replacement therapy poses several practical and ethical dilemmas of global relevance for patients, clinicians, and policy makers. These include how to: promote patients' best interests; increase access to dialysis while maintaining procedural and distributive justice; minimise the influence of financial incentives and competing interests; ensure quality of care in service delivery and access to non-dialytic supportive care when needed; minimise the financial burden on patients and health-care system; and protect the interests of vulnerable groups during crisis situations. These issues have received comparatively little attention, and there is scant ethical analysis and guidance available to decision makers. In this Health Policy, we provide an overview of the major ethical issues related to dialysis provision worldwide, identify priorities for further investigation and management, and present preliminary recommendations to guide practice and policy.

The Evolving Ethics of Dialysis in the United States: A Principlist Bioethics Approach.

Throughout the history of dialysis, four bioethical principles - beneficence, nonmaleficence, autonomy and justice - have been weighted differently based upon changing forces of technologic innovation, resource limitation, and societal values. In the 1960s, a committee of lay people in Seattle attempted to fairly distribute a limited number of maintenance hemodialysis stations guided by considerations of justice. As technology advanced and dialysis was funded under an amendment to the Social Security Act in 1972, focus shifted to providing dialysis for all in need while balancing the burdens of treatment and quality of life, supported by the concepts of beneficence and nonmaleficence. At the end of the last century, the importance of patient preferences and personal values became paramount in medical decisions, reflecting a focus on the principle of autonomy. More recently, greater recognition that health care financial resources are limited makes fair allocation more pressing, again highlighting the importance of distributive justice. The varying application and prioritization of these four principles to both policy and clinical decisions in the United States over the last 50 years makes the history of hemodialysis an instructive platform for understanding principlist bioethics. As medical technology evolves in a landscape of changing personal and societal values, a comprehensive understanding of an ethical framework for evaluating appropriate use of medical interventions enables the clinician to systematically negotiate and optimize difficult ethical situations.

Dialysis for undocumented immigrants in the United States.

The United States offers near-universal coverage for treatment of ESRD. Undocumented immigrants with ESRD are the only subset of patients not covered under a national strategy. There are 2 divergent dialysis treatment strategies offered to undocumented immigrants in the United States, emergent dialysis and chronic outpatient dialysis. Emergent dialysis, offering dialysis only when urgent indications exist, is the treatment strategy in certain states. Differing interpretations of Emergency Medicaid statute by the courts and state and federal government have resulted in the geographic disparity in treatment strategies for undocumented immigrants with ESRD. The Patient Protection and Affordable Care Act of 2010 ignored the health care of undocumented immigrants and will not provide relief to undocumented patients with catastrophic illness like ESRD, cancer, or traumatic brain injuries. The difficult patient and provider decisions are explored in this review. The Renal Physicians Association Position Statement on uncompensated renal-related care for noncitizens is an excellent starting point for a framework to address this ethical dilemma. The practice of "emergent dialysis" will hopefully be found unacceptable in the future because of the fact that it is not cost effective, ethical, or humane.

Ethics and Rationing Access to Dialysis in Resource-Limited Settings: The Consequences of Refusing a Renal Transplant in the South African State Sector.

Resource constraints in developing countries compel policy makers to ration the provision of healthcare services. This article examines one such set of Guidelines: A patient dialysing in the state sector in South Africa may not refuse renal transplantation when a kidney becomes available. Refusal of transplantation can lead to exclusion from the state-funded dialysis programme. This Guideline is legally acceptable as related to Constitutional stipulations which allow for rationing healthcare resources in South Africa. Evaluating the ethical merit of the Guideline, and exploring the ethical dilemma it poses, proves a more complex task. We examine the actions of healthcare professionals as constrained by the Guideline. From a best interests framework, we argue that in these circumstances directing patient decision making (pressurising a patient to undergo renal transplantation) is not necessarily unethical or unacceptably paternalistic. We then scrutinise the guideline itself through several different ethical 'lenses'. Here, we argue that bioethics does not provide a definitive answer as to the moral merit of rationing dialysis under these circumstances, however it can be considered just in this context. We conclude by examining a potential pitfall of the Guideline: Unwilling transplant recipients may not comply with immunosuppressive medication, which raises questions for policies based on resource management and rationing.

Undocumented and at the end of life.

Three of the most contentious issues in contemporary American society-allocation of medical resources, end of life care, and immigration-converge when undocumented immigrant patients are facing the terminal phase of chronic illness. The lack of consistent, pragmatic policy in each of these spheres leaves us with little guidance for how to advocate for undocumented patients at the end of life. Limited resources and growing need compound the problem. Care for patients in this unfortunate situation should be grounded in clinical and economic reality as well as respect for the dignity of the individual to avoid exacerbating inequalities.

Ethics and health policy of dialyzing a patient in a persistent vegetative state.

Each year, out-of-hospital cardiac arrests occur in approximately 300,000 Americans. Of these patients, less than 10% survive. Survivors often live with neurologic impairments that neurologists classify as anoxic-ischemic encephalopathy (AIE). Neurologic impairments under AIE can vary widely, each with unique outcomes. According to the American Academy of Neurology Practice Parameter paper, the definition of poor outcome in AIE includes death, persistent vegetative state (PVS), or severe disability requiring full nursing care 6 months after event. In a recent survey, participants deemed an outcome of PVS as "worse than dead." Lay persons' assessments of quality of life for those in a PVS provide assistance for surrogate decision-makers who are confronted with the clinical decision-making for a loved one in a PVS, whereas clinical practice guidelines help health care providers to make decisions with patients and/or families. In 2000, the Renal Physicians Association and the American Society of Nephrology published a clinical practice guideline, "Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis." In 2010, after advances in research, a second edition of the guideline was published. The updated guideline confirmed the recommendation to withhold or withdraw ongoing dialysis in "patients with irreversible, profound neurological impairments such that they lack signs of thought, sensation, purposeful behavior and awareness of self and environment," such as found in patients with PVS. Here, the authors discuss the applicability of this guideline to patients in a PVS. In addition, they build on the guideline's conception of shared decision-making and discuss how continued dialysis violates ethical and legal principles of care in patients in a PVS.