Kidney Clinicians' Perceptions of Challenges and Aspirations to Improve End-Of-Life Care Provision.

Introduction: End-of-life care is an essential part of integrated kidney care. However, renal clinicians' experiences of care provision and perceptions of end-of-life care needs are limited. This study explored renal clinicians' experiences of providing end-of-life care and developed recommendations to improve experiences. Methods: An exploratory qualitative study using semistructured focus groups and 1 interview was undertaken at 5 kidney services in Victoria, Australia. The transcripts were analyzed thematically. Results: Between February and December 2017, 54 renal clinicians (21 doctors and 33 nurses) participated in the study. Clinicians reported multiple challenges of end-of-life care experiences resulting in compromised treatment planning and decision making and highlighted priorities to guide better care experiences. Challenges of providing end-of-life care were underpinned by mismatches in illness and treatment expectations, limited engagement in advance care planning, medical complexity, and differences between clinicians and patients in what constituted quality of life. These challenges were associated with compromised end-of-life care planning, which resulted in care experiences that were rushed with a prolonged treatment focus, risking limited preparation for death and moral distress. Clinicians aspired for positive end-of-life care experiences, including patient control and consensus in decision making, and a coordinated and collaborative approach across healthcare providers. Conclusions: Renal clinicians highlighted multiple factors and circumstances which resulted in experiences of compromised end-of-life care for patients with kidney disease. To improve care experiences, clinician-directed priorities included more training and support to facilitate systematic and earlier discussions about illness expectations and end-of-life care planning and greater communication and collaboration across healthcare providers is required.

Referral Criteria to Specialist Palliative Care for People with Advanced Chronic Kidney Disease: A Systematic Review.

CONTEXT: People with advanced chronic kidney disease (CKD) have significant morbidity, yet for many, access to palliative care occurs late, if at all. OBJECTIVES: This study sought to examine criteria for referral to specialist palliative care for adults with advanced CKD with a view to improving use of these essential services. METHODS: Systematic review of studies detailing referral criteria to palliative care in advanced CKD conducted and reported according to the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) guideline and registered (PROSPERO: CRD42021230751). DATA SOURCES: Electronic databases (Ovid, MEDLINE, Ovid Embase, and PubMed) were used to identify potential studies, which were subjected to double review, data extraction, thematic coding, and descriptive analyses. RESULTS: Searches yielded 650 unique titles ultimately resulting in 56 studies addressing referral criteria to specialist palliative care in advanced CKD. Of 10 categories of referral criteria, most commonly discussed were: Critical times of treatment decision making (n = 23, 41%); physical or emotional symptoms (n = 22, 39%); limited prognosis (n = 18, 32%); patient age and comorbidities (n = 18, 32%); category of CKD/ biochemical criteria (n = 13, 23%); functional decline (n = 13, 23); psychosocial needs (n = 9, 16%); future care planning (n = 9, 16%); anticipated decline in illness course (n = 8, 14%); and hospital use (n = 8, 14%). CONCLUSION: Clinicians consider referral to specialist palliative care for a wide range of reasons, with many related to care needs. As palliative care continues to integrate with nephrology, our findings represent a key step towards developing consensus criteria to standardize referral for patients with chronic kidney diseases.

How Do Kidney Disease Clinicians View Kidney Supportive Care and Palliative Care? A Qualitative Study.

RATIONALE & OBJECTIVE: Kidney supportive care (KSC) is a developing area in medicine that integrates the expertise of kidney and palliative care practitioners to improve symptoms and quality of life for people with advanced kidney disease. The intersection of the practical aspects of KSC (including care activities and clinical referrals) with palliative and end-of-life care (EOLC) are largely unknown. The aim of this study was to explore kidney disease clinicians' experiences of KSC, palliative care, and EOLC. STUDY DESIGN: An exploratory qualitative study using semistructured focus groups. SETTING & PARTICIPANTS: Kidney disease clinicians (18 physicians, 3 trainees, and 33 kidney disease nurses) from 5 public hospitals were recruited across Victoria, Australia. ANALYTICAL APPROACH: Thematic analysis of focus group transcripts. RESULTS: The 2 overarching themes highlighted by clinicians were their perception that their health care systems insufficiently addressed the needs of people with advanced kidney disease, as well as their aspirations to develop KSC services to improve health care experiences. Three subthemes were identified related to limitations in health care systems: (1) variation in the clinical scope of KSC, (2) limited integration of palliative care, and (3) experiences of challenging and compromised provision of EOLC. The second theme described aspirations for future KSC services to be more inclusive, seamless, and collaborative across health care providers with capacity to respond to meet changing palliative care needs. LIMITATIONS: Findings may not be transferable to contexts outside of Victoria, Australia; data were collected in 2017-2018 and may not reflect current or future experiences. CONCLUSIONS: Kidney clinicians described systemic challenges and compromises in care experiences and the need for development of KSC services. They expressed that this development would require a consistent and systematic approach that integrates palliative care and embeds KSC as part of kidney health service delivery.

Impact of the COVID-19 pandemic on the kidney community: lessons learned and future directions.

The coronavirus disease 2019 (COVID-19) pandemic has disproportionately affected patients with kidney disease, causing significant challenges in disease management, kidney research and trainee education. For patients, increased infection risk and disease severity, often complicated by acute kidney injury, have contributed to high mortality. Clinicians were faced with high clinical demands, resource shortages and novel ethical dilemmas in providing patient care. In this review, we address the impact of COVID-19 on the entire spectrum of kidney care, including acute kidney injury, chronic kidney disease, dialysis and transplantation, trainee education, disparities in health care, changes in health care policies, moral distress and the patient perspective. Based on current evidence, we provide a framework for the management and support of patients with kidney disease, infection mitigation strategies, resource allocation and support systems for the nephrology workforce.

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.

Renal supportive care, palliative care and end-of-life care: Perceptions of similarities, differences and challenges across Australia and New Zealand.

Renal supportive care (RSC) is an approach integrating nephrology and palliative care to improve quality of life for people with chronic kidney disease (CKD). RSC practice varies across services; therefore, understanding clinicians' perspectives is important to the evolution and definition of RSC. AIM: To understand renal clinicians' views and experiences of RSC, palliative care and end-of-life care. METHOD: A cross-sectional online survey was undertaken across Australia and New Zealand between February and May 2018. Participants were asked about end-of-life care, RSC, palliative care and an ideal model of RSC. RESULTS: Estimated response rate 13% included 382 clinicians; doctors (32%), nurses (68%); of whom 84% access specialist palliative care and 59% RSC. A lack of agreed treatment goals (86%) and late or rushed treatment decision making (85%) was associated with challenging end-of-life experiences. Variable concepts of RSC were described, with RSC being considered the same as: usual care for all CKD patients (40%), conservative (30%) or palliative care (22%). The term RSC was generally distinct from (77%) and more acceptable than palliative care (80%) with preferential RSC referral for symptoms (86% vs 69%, P < .01) and complex treatment decision making (82% vs 58%, P < .01). Aspirations for RSC included improving symptoms and quality of life (89%), with an ideal model comprising: symptom management (98%), improved nephrology and community service integration (96%) and clinician education (94%). CONCLUSION: This study revealed challenges for renal clinicians in providing end-of-life care and variation of views and experiences of RSC. It represents opportunities to develop RSC aligned with clinician priorities to improve patient care.

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.

Recognising and managing dying patients in the acute hospital setting: can we do better?

Healthcare professionals have limited formal end-of-life care training despite the large proportion of hospital deaths. A retrospective review of 201 acute hospital deaths revealed 166 (82.6%) had documentation to suggest the patient was dying but this was performed late with a median time between documentation and death of 0.84 days. Furthermore, 132 (66%) patients received an intervention in the final 48 h of life. This highlights the need to improve the recognition and management of dying patients in acute hospitals.

Patient-reported outcome measures and their utility in the management of patients with advanced chronic kidney disease.

Symptom and quality of life (QOL) measures in patients with advanced chronic kidney disease are recognized indicators of patient-centred care and represent important research, quality and clinical measures. This study examined relationships between symptom burden, QOL and functional status and associations of symptoms and mortality risk. A multisite longitudinal cohort analysis was undertaken in chronic kidney disease stage 4/5 (no dialysis) and dialysis patients. Patients completed symptom and QOL measures (Palliative Care Outcome Symptom Score renal), World Health Organisation QOL Brief Version) and Karnofsky Performance scale. Clinical and demographic data were recorded.

Perioperative risk assessment for successful kidney transplant in leigh syndrome: a case report.

BACKGROUND: Leigh syndrome (LS) is a rare neurodegenerative mitochondrial disorder which typically presents in childhood but has a varied clinical course. Renal involvement such as proximal tubulopathy in patients with mitochondrial disorders has been described. However, end stage renal disease (ESRD) is uncommon and literature regarding patients undergoing kidney transplantation is limited. Successful deceased donor renal transplant has not been previously described in a patient with Leigh Syndrome. CASE PRESENTATION: We report a 21-year-old Han Chinese man who presented with limb weakness and unsteady gait, which progressed rapidly over a period of months until he was wheelchair-bound. He subsequently developed ESRD and was commenced on hemodialysis. Investigations revealed a m.13513G > A mutation with clinical and radiological features consistent with LS. His mitochondrial disease stabilised and he underwent a multidisciplinary assessment for deceased donor kidney transplantation to identify and minimise the LS-associated perioperative risks and potential negative effects of immunosuppressants on his LS. Successful kidney transplantation followed with excellent graft function three and a half years post-transplant and improvement in the patient's physical function. CONCLUSION: This case highlights the importance of careful pre-transplant perioperative risk assessment and post-transplant care in a rare and heterogeneous neurological disease to achieve an ultimately excellent clinical outcome. To our knowledge, this is the first report of successful deceased donor kidney transplant in a patient with known LS.

Contrast enhanced ultrasound (CEUS) in the diagnosis of post-partum bilateral renal cortical necrosis: a case report and review of the literature.

Renal cortical necrosis is a rare condition with complex pathogenesis. There is no consensus over the best investigative modality for an initial diagnosis that is often in the context of acute renal failure. The applications of ultrasound contrast are ever growing, particularly with regard to the assessment of abdominal organs. Here, we present a case of post-partum bilateral renal cortical necrosis affecting bilateral native kidneys and the subsequent use of contrast enhanced ultrasound in confirming this diagnosis. The sonographic appearance was found to correlate with the patients' clinical presentation and other imaging findings. Secondarily, this allowed for appropriate and timely medical management and establishes the utility of ultrasound contrast in this clinical scenario. Contrast enhanced sonographic assessment should be considered early in patients with suspected renal vascular compromise. It is a safe, easy and efficacious investigative modality to stratify those patients with renal cortical necrosis from those with potentially reversible medical causes.

Recurrent Mycobacterium haemophilum in a renal transplant recipient.

Mycobacterium haemophilum is a rare isolate of non-tuberculous Mycobacterium which has been reported to affect immunocompromised patients. We report a case of a 32-year-old renal transplant patient with M. haemophilum infection initially involving his left sinus which was treated with appropriate antimicrobial therapy for thirteen months. Two weeks after cessation of antibiotics the infection rapidly recurred in his skin and soft tissues of his hands and feet. This case highlights the difficult diagnostic and therapeutic implications of atypical infections in transplant patients. To our knowledge this is the first reported case of relapsed M. haemophilum infection in a renal transplant recipient.

A case of triple pathology: seronegative anti-glomerular basement membrane antibody-mediated glomerulonephritis and membranous nephropathy in a patient with underlying diabetic kidney disease.

In diabetic patients with acute kidney injury (AKI), kidney biopsy often reveals non-diabetic kidney pathology. This case describes a patient with known Type 1 diabetes who presented with AKI, nephrotic syndrome and haematuria. Combination pathology of seronegative anti-glomerular basement membrane antibody-mediated glomerulonephritis (anti-GBM GN), membranous nephropathy (MN) and diabetic nephropathy (DN) was demonstrated. Strong linear GBM IgG-staining on biopsy with crescentic GN and clinical AKI led to a diagnosis of anti-GBM GN, although serum antibodies were not detectable. Features of DN, Kimmelstiel-Wilson nodules and albumin staining were also present, along with features of MN, such as subepithelial deposits on electron microscopy. Despite treatment with immunosuppression and plasmapheresis, there was no recovery of kidney function. Coexisting anti-GBM GN and MN is well recognized, but the concurrent diagnosis with DN has not been described.