Providers' experiences discussing care for patients with kidney failure who forgo kidney replacement therapy: A national qualitative study.

BACKGROUND: Many nephrology providers express difficulty in discussing care options for patients who forgo kidney replacement therapy (KRT), which hampers their ability to help patients make decisions about their current and future treatment of kidney disease. METHODS: We conducted a qualitative study using interviews with a national sample of nephrology providers (i.e., physicians and advanced practice providers) who participated in US professional societies between July and December 2022. We performed a thematic analysis of interviews to identify emergent themes reflecting providers' experiences discussing care for patients who forgo KRT. RESULTS: There were 21 providers (age 54±13years, female 81%, White 32%) who participated in interviews, of which 43% were physicians and most (57%) practiced in academic settings. Three dominant themes emerged from interviews: 1) Inconsistent terminology: while providers sought to use terms to describe care for patients who forgo KRT that affirmed patients' decision, clearly conveyed that KRT would not be pursued, and were familiar to patients and other providers, they disagreed about which terms satisfied these priorities; 2) Blurred distinctions between KRT and its alternative: providers' descriptions of their care practices suggested that differences in their approaches to caring for patients who forgo KRT and those who are planning to pursue KRT could be opaque; and, 3) Deciphering patients' decision to forgo KRT: providers did not readily accept patients' expressed preferences to forgo KRT at face value and described using a variety of methods to assess whether patients would follow through with their decision. CONCLUSIONS: Providers used different, inconsistent terms to describe care for patients who forgo KRT. They disagreed about what this care entailed and were uncertain about what patients might mean when they express not wanting to undergo KRT.

A Conceptual Framework of Palliative Care across the Continuum of Advanced Kidney Disease.

Kidney palliative care is a growing discipline within nephrology. Kidney palliative care specifically addresses the stress and burden of advanced kidney disease through the provision of expert symptom management, caregiver support, and advance care planning with the goal of optimizing quality of life for patients and families. The integration of palliative care principles is necessary to address the multidimensional impact of advanced kidney disease on patients. In particular, patients with advanced kidney disease have a high symptom burden and experience greater intensity of care at the end of life compared with other chronic serious illnesses. Currently, access to kidney palliative care is lacking, whether delivered by trained kidney care professionals or by palliative care clinicians. These barriers include a gap in training and workforce, policies limiting access to hospice and outpatient palliative care services for patients with ESKD, resistance to integrating palliative care within the nephrology community, and the misconception that palliative care is synonymous with end-of-life care. As such, addressing kidney palliative care needs on a population level will require not only access to specialized kidney palliative care initiatives, but also equipping kidney care professionals with the skills to address basic kidney palliative care needs. This article will address the role of kidney palliative care for patients with advanced kidney disease, describe models of care including primary and specialty kidney palliative care, and outline strategies to improve kidney palliative care on a provider and system level.

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.

Renal ApoA-1 amyloidosis with Glu34Lys mutation and intra-amyloid lipid accumulation.

Apolipoprotein A-1 (ApoA-1) amyloidosis occurs as a nonhereditary condition in atherosclerotic plaques, but it can also manifest as a hereditary disorder caused by mutations of the APOA1 gene. Hereditary ApoA-1 amyloidosis presents with diverse organ involvement based on the position of the mutation. We describe a case of ApoA-1 amyloidosis with a Glu34Lys mutation; testicular, conjunctival, and renal involvement; and the notable finding of lipid deposition within the amyloid deposits.