Jane O. Schell

Discussions of the Kidney Disease Trajectory by Elderly Patients and Nephrologists: A Qualitative Study

BACKGROUND Elderly patients with advanced kidney disease experience considerable disability, morbidity, and mortality. Little is known about the impact of physician-patient interactions on patient preparation for the illness trajectory. We sought to describe how nephrologists and older patients discuss and understand the prognosis and course of kidney disease leading to renal replacement therapy. METHODS We conducted focus groups and interviews with 11 nephrologists and 29 patients older than 65 years with advanced chronic kidney disease or receiving hemodialysis. Interviews were audiorecorded and transcribed. We used qualitative analytic methods to identify common and recurrent themes related to the primary research question. RESULTS We identified 6 themes that describe how the kidney disease trajectory is discussed and understood: (1) patients are shocked by their diagnosis, (2) patients are uncertain how their disease will progress, (3) patients lack preparation for living with dialysis, (4) nephrologists struggle to explain illness complexity, (5) nephrologists manage a disease over which they have little control, and (6) nephrologists tend to avoid discussions of the future. Patients and nephrologists acknowledged that prognosis discussions are rare. Patients tended to cope with thoughts of the future through avoidance by focusing on their present clinical status. Nephrologists reported uncertainty and concern for evoking negative reactions as barriers to these conversations. CONCLUSIONS Patients and nephrologists face challenges in understanding and preparing for the kidney disease trajectory. Communication interventions that acknowledge the role of patient emotion and address uncertainty may improve how nephrologists discuss disease trajectory with patients and thereby enhance their understanding and preparation for the future.

NephroTalk: communication tools to enhance patient-centered care.

Nephrologists frequently must discuss serious news with patients, especially those with advanced comorbidities. These discussions include giving bad news, addressing prognosis, and assisting with treatment decision making. Few data exist about how nephrologists approach these difficult conversations. This article presents a framework for engaging in these discussions using a case example, and provides tools for assisting with treatment decision making for initiating or forgoing dialysis. Communication skills presented include Ask‐Tell‐Ask for discussing serious news, the N‐U‐R‐S‐E acronym for recognizing and responding to emotion; tools for naming uncertainty when addressing prognosis; and using big picture questions to elicit patient care preferences for treatment decision making. This article provides nephrologists with the framework and skills to better engage in patient‐centered decision making.

Establishing Core Outcome Domains in Hemodialysis: Report of the Standardized Outcomes in Nephrology–Hemodialysis (SONG-HD) Consensus Workshop

Evidence-informed decision making in clinical care and policy in nephrology is undermined by trials that selectively report a large number of heterogeneous outcomes, many of which are not patient centered. The Standardized Outcomes in Nephrology-Hemodialysis (SONG-HD) Initiative convened an international consensus workshop on November 7, 2015, to discuss the identification and implementation of a potential core outcome set for all trials in hemodialysis. The purpose of this article is to report qualitative analyses of the workshop discussions, describing the key aspects to consider when establishing core outcomes in trials involving patients on hemodialysis therapy. Key stakeholders including 8 patients/caregivers and 47 health professionals (nephrologists, policymakers, industry, and researchers) attended the workshop. Attendees suggested that identifying core outcomes required equitable stakeholder engagement to ensure relevance across patient populations, flexibility to consider evolving priorities over time, deconstruction of language and meaning for conceptual consistency and clarity, understanding of potential overlap and associations between outcomes, and an assessment of applicability to the range of interventions in hemodialysis. For implementation, they proposed that core outcomes must have simple, inexpensive, and validated outcome measures that could be used in clinical care (quality indicators) and trials (including pragmatic trials) and endorsement by regulatory agencies. Integrating these recommendations may foster acceptance and optimize the uptake and translation of core outcomes in hemodialysis, leading to more informative research, for better treatment and improved patient outcomes.

A Communication Framework for Dialysis Decision-Making for Frail Elderly Patients

Frail elderly patients with advanced kidney disease experience many of the burdens associated with dialysis. Although these patients constitute the fastest-growing population starting dialysis, they often suffer loss of functional status, impaired quality of life, and increased mortality after dialysis initiation. Nephrology clinicians face the challenges of helping patients decide if the potential benefits of dialysis outweigh the risks and preparing such patients for future setbacks. A communication framework for dialysis decision-making that aligns treatment choices with patient goals and values is presented. The role of uncertainty is highlighted, and the concept of a goal-directed care plan is introduced. This plan incorporates a time-limited trial that promotes frequent opportunities for reassessment. Using the communication skills presented, the clinician can prepare and guide patients for the dialysis trajectory as it unfolds.

Recent insights into life expectancy with and without dialysis.

Purpose of review Elderly patients comprise the fastest growing population initiating dialysis and also experience the worst outcomes, including increased mortality, loss of functional status, and impaired quality of life. Nephrologists are often challenged with how best to engage in dialysis decision-making discussions within this population. Prognostication tools can assist nephrologists in engaging in these discussions, especially in patients for whom survival benefits may be outweighed by the burdens of treatment. Recent findings This review includes the latest research in the survival of elderly patients with and without dialysis; prognostic factors associated with renal progression and survival; and integrative prognostic models to predict both short-term and long-term prognosis. The concept of kidney illness disease trajectory is defined with important outcomes including survival, health-related quality of life, and symptoms with and without dialysis. This prognostic information will then be integrated into an individualized approach to shared decision-making regarding treatment decision-making. Box 1. no caption available Summary Treatment decision-making for elderly patients with advanced kidney disease necessitates an active process between nephrologist and patient, incorporating medical information as well as patient preferences. Prognostic information and observational data can facilitate nephrologists’ ability to foresee and foretell the illness trajectory both with and without dialysis, further guiding these conversations.

Illness trajectories and their relevance to the care of adults with kidney disease.

Purpose of reviewExisting practice guidelines for chronic kidney disease advocate a stage-based approach to management, in which treatment recommendations are based largely on the severity of kidney disease, and future risk for adverse health outcomes. However, the course of kidney disease can vary widely among patients with similar levels of kidney function, and each patient will experience their illness in unique ways. Recent findingsWe summarize recent studies of patterns of kidney function over time among patients with chronic kidney disease, and discuss these findings in the context of relevant conceptual models of illness and communication. Although knowledge of disease severity can provide useful information on life expectancy and risk for future health events, an understanding of each patients illness trajectory and their unique experience of illness is essential in supporting patient-centered care for patients with kidney disease. This information can be helpful in setting realistic expectations for the future, in communicating about prognosis and in aligning treatment decisions with each patients goals and preferences. SummaryWe here explain how an understanding of illness trajectories may be useful in predicting and guiding care and decision-making in patients with kidney disease. We highlight the importance of competing disease trajectories, the heterogeneity in renal function trajectories among patients with kidney disease, and the variability in these trajectories over time in individual patients. We discuss how individual disease trajectories can shape each patients experience of illness. Finally, we explain how an understanding of an individual patients illness trajectory and experience of illness may be useful in guiding discussions about prognosis and treatment decisions and in supporting a patient-centered approach to care.

Incorporating Geriatric Assessment into a Nephrology Clinic: Preliminary Data from Two Models of Care

Older adults with advanced chronic kidney disease (CKD) experience functional impairment that can complicate CKD management. Failure to recognize functional impairment may put these individuals at risk of further functional decline, nursing home placement, and missed opportunities for timely goals‐of‐care conversations. Routine geriatric assessment could be a useful tool for identifying older adults with CKD who are at risk of functional decline and provide contextual information to guide clinical decision‐making. Two innovative programs were implemented in the Veterans Health Administration that incorporate geriatric assessment into a nephrology visit. In one program, a geriatrician embedded in a nephrology clinic used standardized geriatric assessment tools with individuals with CKD aged 70 and older (Comprehensive Geriatric Assessment for CKD) (CGA‐4‐CKD). In the second program, a nephrology clinic used comprehensive appointments for individuals aged 75 and older to conduct geriatric assessments and CKD care (Renal Silver). Data on 68 veterans who had geriatric assessments through these programs between November 2013 and May 2015 are reported. In CGA‐4‐CKD, difficulty with one or more activities of daily living (ADLs), history of falls, and cognitive impairment were each found in 27.3% of participants. ADL difficulty was found in 65.7%, falls in 28.6%, and cognitive impairment in 51.6% of participants in Renal Silver. Geriatric assessment guided care processes in 45.4% (n = 15) of veterans in the CGA‐4‐CKD program and 37.1% (n = 13) of those in Renal Silver. Findings suggest there is a significant burden of functional impairment in older adults with CKD. Knowledge of this impairment is applicable to CKD management.

Pain Management in CKD: A Guide for Nephrology Providers

Although pain is one of the most commonly experienced symptoms by patients with chronic kidney disease, it is under-recognized, the severity is underestimated, and the treatment is inadequate. Pain management is one of the general primary palliative care competencies for medical providers. This review provides nephrology providers with basic skills for pain management. These skills include recognition of types of pain (nociceptive and neuropathic) syndromes and appropriate history-taking skills. Through this history, providers can identify clinical circumstances in which specialist referral is beneficial, including those who are at high risk for addiction, at risk for adverse effects to medications, and those with complicated care needs such as patients with a limited prognosis. Management of pain begins with the development of a shared treatment plan, identification of appropriate medications, and continual follow-up and assessment of efficacy and adverse effects. Through adequate pain management, providers can positively affect the health of individual patients and the performance of health care systems.

What are the ill effects of chronic dialysis? The benefits of a second conversation: how experience influences decision-making.

6:1326–1332, 2011 21. Jefferies HJ, Burton JO, McIntyre CW: Individualised dialysate temperature improves intradialytic haemodynamics and abrogates haemodialysis induced myocardial stunning, without compromising tolerability. Blood Purif 32:63–68, 2011 22. Hur E, Usta M, Toz H, Asci G, Wabel P, Kahvecioglu S, Kayikcioglu M, Demirci MS, Ozkahya M, Duman S, Ok E: Effect of fluid management guided by bioimpedance spectroscopy on cardiovascular parameters in hemodialysis patients: a randomized controlled trial. Am J Kidney Dis 61:957–965, 2013

Opportunities to Improve End-of-Life Care in ESRD

With their 1986 publication, Neu and Kjellstrand acknowledged that some dialysis patients choose to stop dialysis ([1][1]). At the time, their report was provocative because the topic had not been acknowledged. Since then, stopping dialysis is recognized as a common practice that is a leading cause