Ethical Duties of Nephrologists: When Patients Are Nonadherent to Treatment.

When providing care, nephrologists are subject to various ethical duties. Beyond the Hippocratic notion of doing no harm, nephrologists also have duties to respect their patients' autonomy and dignity, to meet their patients' care goals in the least invasive way, to act impartially, and, ultimately, to do what is (clinically) beneficial for their patients. Juggling these often-conflicting duties can be challenging at the best of times, but can prove especially difficult when patients are not fully adherent to treatment. When a patient's nonadherence begins to cause harm to themselves and/or others, it may be questioned whether discontinuation of care is appropriate. We discuss how nephrologists can meet their ethical duties when faced with nonadherence in patients undergoing hemodialysis, including episodic extreme agitation, poor renal diet, missed hemodialysis sessions, and emergency presentations brought on by nonadherence. Furthermore, we consider the impact of cognitive impairment and provider-family conflict when making care decisions in a nonadherence context, as well as how the coronavirus disease 2019 pandemic might affect responses to nonadherence. Suggestions are provided for ethically informed responses, prioritizing a patient-narrative approach that is attentive to patients' values and preferences, multidisciplinarity, and the use of behavioral contracts and/or technology where appropriate.

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.

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.

Learning from Covid.

Mrs. Clark's case was an ordinary consult in an extraordinary time. She was refusing dialysis, but the psychiatric unit had concluded that she lacked capacity for such decision-making. The only difference between Mrs. Clark's current hospitalization and the last two was that it was April 2020 and a virus called Covid-19 had overtaken our hospital. As the chief of Montefiore Medical Center's bioethics service, when I received a consult before the virus, I always saw the patient. Whether the patient had been in a vegetative state for a day or for years, it didn't matter. I would lay my hand on a leg or an arm and observe. But Covid-19 enforced physical boundaries between my team and our patients; I would not be able to meet Mrs. Clark. Our hospital responded to the attack on human connection by getting creative. We asked ourselves, which tools are still available to us? Answering this involved, in part, finding new ways for our team of clinical ethicists to support the clinicians caring for Mrs. Clark.

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.

[The contribution of an ethical concertation group in nephrology validated by a research protocol]. / L'apport d'une unité de concertation éthique pour la pratique professionnelle en néphrologie validé par un protocole de recherche.

For more than 10 years, nephrologists in the Grenoble-region have sought advice from the Ethical Concertation Unit in Nephrology with regards to whether to stop or continue dialysis for patients under palliative care. This process deserves a multidisciplinary debate between health professionals and qualified non-health professionals. Thus, we organized a qualitative research protocol in three parts (medical, philosophical, judicial) to explore this issue. Our study aimed to assess the impact of Ethical Concertation Unit in Nephrology's discussions regarding perception, knowledge, and judicial and ethical considerations. The practical repercussions of decision-making within medical practice, its impacts on the patient and his/her family, as well as associated-health professionals, was assessed. To achieve this, two questionnaires and an interview were organized by three Ethical Concertation Unit in Nephrology-leaders to review the viewpoints of the 22 permanent Ethical Concertation Unit in Nephrology members that had participated in 10 Ethical Concertation Unit in Nephrology sessions between 2015 and 2016 to discuss 21 case-reports. Only 13 persons (4 physicians, 6 nurses, 3 non-health professionals) agreed to respond to the questionnaires, and six physicians agreed to participate in an interview. Overall, it was found that most affected patients' physicians agreed with the multidisciplinary discussion, which included judicial and ethical perspectives, and felt reassured with regards to Ethical Concertation Unit in Nephrology's final decision. However, our study showed that Ethical Concertation Unit in Nephrology's functioning could be improved by promoting its existence more widely, by making these decisions earlier within clinical situations, to make Ethical Concertation Unit in Nephrology more accessible to health workers, to make reports easier to understand, to re-examine a posteriori some clinical situations, and to broaden the scope of multidisciplinary skills.

Should Dialysis Be Stopped for an Unrepresented Patient With Metastatic Cancer?

Unrepresented patients (also referred to as unbefriended, patients alone, patients without proxy, or isolated patients) are among the most vulnerable persons entering the health care system. Legislation concerning these patients varies across the United States, resulting in disparities in care. For example, the statutory definition of who is unrepresented varies. In some states, clergy or close friends may act as surrogates; in other states, they cannot do so. Available end-of-life options also differ, creating significant disparities in end-of-life care for these patients.

Ethical Issues in Pragmatic Cluster-Randomized Trials in Dialysis Facilities.

A pragmatic cluster-randomized trial (CRT) is a research design that may be used to efficiently test promising interventions that directly inform dialysis care. While the Ottawa Statement on the Ethical Design and Conduct of Cluster Randomized Trials provides general ethical guidance for CRTs, the dialysis setting raises additional considerations. In this article, we outline ethical issues raised by pragmatic CRTs in dialysis facilities. These issues may be divided into 7 key domains: justifying the use of cluster randomization, adopting randomly allocated individual-level interventions as a facility standard of care, conducting benefit-harm analyses, gatekeepers and their responsibilities, obtaining informed consent from research participants, patient notification, and including vulnerable participants. We describe existing guidelines relevant to each domain, illustrate how they were considered in the Time to Reduce Mortality in End-Stage Renal Disease (TiME) trial (a prototypical pragmatic hemodialysis CRT), and highlight remaining areas of uncertainty. The following is the first step in an interdisciplinary mixed-methods research project to guide the design and conduct of pragmatic CRTs in dialysis facilities. Subsequent work will expand on these concepts and when possible, argue for a preferred solution.

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.

Non-medical facilitators and barriers towards accessing haemodialysis services: an exploration of ethical challenges.

BACKGROUND: Like most of the sub-Saharan countries, Tanzania faces significant increase in the number of patients diagnosed with an end-stage renal disease (ESRD) among which only a few manage to receive chronic haemodialysis services (CHD). Yet little is known about the non-medical facilitators and barriers towards accessing these services and the associated ethical challenges. METHODS: A phenomenological study design which employed a qualitative approach was used. The study was conducted at the dialysis unit harboured within Muhimbili National Hospital. Data were collected from purposively sampled health care providers and ESRD patients by using in-depth interviews. Text data obtained were analysed based on inductive and deductive content analysis methods to formulate major themes. RESULTS: Fourteen key informants were interviewed including nephrologists, renal nurses, social workers, nutritionists and ESRD patients. Three major themes were formulated: a) non-medical facilitators towards accessing CHD services which enshrines two sub-themes (membership to health insurance scheme and family support), (b) non-medical barriers towards accessing CHD services which enshrines four sub-themes (affordability of treatment costs, geographical accessibility, availability of CHD resources and acceptability of treatment procedures) and lastly (c) ethical challenges associated with accessing CHD services which also enshrines three sub-themes (dual role of health care providers, patients autonomy in decision making, and treatment disparity). CONCLUSION: Non-medical facilitators to access CHD benefits few patients whereas non-medical barriers leave many ESRD patients untreated or partially treated. On the other hand, ethical challenges like treatment inequality are quickly gaining momentum. There is a need for guideline highlighting importance, position, and limitation of non-medical factors in the delivery of CHD services in Tanzania and other developing countries.

Mercado regulado de órganos: el caso de Irán / Regulated market for organs: the case of Iran / Mercat regulat d’òrgans: el cas d'Iran

La escasez de órganos es un problema global constante, aun cuando se presentan diversas alternativas para superar ese problema que genera miles de muertes cada año. El presente artículo analiza los problemas éticos y jurídicos del mercado regulado de órganos, partiendo del modelo de donación recompensada de riñones en vida entre no parientes, implantado en Irán en 1988. Para ello, se realizarán algunos apuntes históricos, pasando por la presentación de los procedimientos y características de dicho modelo, concluyendo con sus principales resultados, aciertos y errores. Al final, adoptando una base empírica como punto de partida, se pretende contribuir con el debate teórico que existe en torno a esa polémica alternativa

Organ shortage is a constant, global problem, even though various alternatives are presented to overcome a problem that generates thousands of deaths every year. This article analyses the ethical and legal issues of the regulated organ market, based on the model of rewarded donation of living kidneys among non-relatives, introduced in Iran in 1988. To this purpose, some historical notes will be made, including a presentation of the procedures and characteristics of the Iranian model, concluding with its main results, successes and errors. In the end, adopting an empirical basis as a starting point, the aim is to contribute to the theoretical debate that exists around this controversial alternative

L'escassetat d'òrgans és un problema global constant, tot i que es presenten diverses alternatives per superar aquest problema que genera milers de morts cada any. El present article analitza els problemes ètics i jurídics del mercat regulat d'òrgans, partint del model de donació recompensada de ronyons en vida entre no parents implantat a Iran en 1988. A tal fi, es realitzaran algunes anotacions històriques, passant per la presentació dels procediments i característiques d'aquest model i concloent amb els seus principals resultats, encerts i errors. Adoptant una base empírica com a punt de partida, el que es pretén és intervenir en el debat teòric que existeix a l’entorn d'aquesta polèmica alternativa

Cruel Carousel: The Grim Grind of "Compassionate" Dialysis.

In this graphic narrative, a clinician illustrates an experience of caring for an undocumented patient suffering from end-stage renal disease (ESRD). Cruel Carousel tells one of the stories that most profoundly shaped the author's own views on health care for undocumented immigrants. Graphic narrative was chosen to tell this story because words alone couldn't capture the patient's experience or the author's distress about what happened to him.