Conservative kidney management and kidney supportive care: core components of integrated care for people with kidney failure.

Integrated kidney care requires synergistic linkage between preventative care for people at risk for chronic kidney disease and health services providing care for people with kidney disease, ensuring holistic and coordinated care as people transition between acute and chronic kidney disease and the 3 modalities of kidney failure management: conservative kidney management, transplantation, and dialysis. People with kidney failure have many supportive care needs throughout their illness, regardless of treatment modality. Kidney supportive care is therefore a vital part of this integrated framework, but is nonexistent, poorly developed, and/or poorly integrated with kidney care in many settings, especially in low- and middle-income countries. To address this, the International Society of Nephrology has (i) coordinated the development of consensus definitions of conservative kidney management and kidney supportive care to promote international understanding and awareness of these active treatments; and (ii) identified key considerations for the development and expansion of conservative kidney management and kidney supportive care programs, especially in low resource settings, where access to kidney replacement therapy is restricted or not available. This article presents the definitions for conservative kidney management and kidney supportive care; describes their core components with some illustrative examples to highlight key points; and describes some of the additional considerations for delivering conservative kidney management and kidney supportive care in low resource settings.

Concurrent Hospice and Dialysis Care: Considerations for Implementation.

IMPORTANCE: Hospice positively impacts care at the end of life for patients and their families. However, compared to the general Medicare population, patients on dialysis are half as likely to receive hospice. Concurrent hospice and dialysis care offers an opportunity to improve care for people living with end-stage kidney disease (ESKD). OBJECTIVE: We sought to (1) develop a conceptual model of the Program and (2) identify key components, resources, and considerations for further implementation. DESIGN: We conducted a template analysis of qualitative interviews and convened a community advisory panel (CAP) to get feedback on current concurrent care design and considerations for dissemination and implementation. PARTICIPANTS: Thirty-nine patients with late-stage chronic kidney disease (CKD), family caregivers, bereaved family caregivers, hospice clinicians, nephrology clinicians, administrators, and policy experts participated in interviews. A purposive subset of 19 interviewees composed the CAP. MAIN MEASURES: Qualitative feedback on concurrent care design refinements, implementation, and resources. KEY RESULTS: Participants identified four themes that define an effective model of concurrent hospice and dialysis: it requires (1) timely goals-of-care conversations and (2) an interdisciplinary approach; (3) clear guidelines ensure smooth transitions for patients and families; and (4) hospice payment policy must support concurrent care. CAP participants provided feedback on the phases of an effective model of concurrent hospice and dialysis, and resources, including written and interactive educational materials, communication tools, workflow processes, and order sets. CONCLUSIONS: We developed a conceptual model for concurrent hospice and dialysis care and a corresponding resource list. In addition to policy changes, clinical implementation and educational resources can facilitate scalable and equitable dissemination of concurrent care. Concurrent hospice and dialysis care must be systematically evaluated via a hybrid implementation-effectiveness trial that includes the resources outlined herein, based on our conceptual model of concurrent care delivery.

Description and Outcomes of an Innovative Concurrent Hospice-Dialysis Program.

BACKGROUND: Compared with the general Medicare population, patients with ESKD have worse quality metrics for end-of-life care, including a higher percentage experiencing hospitalizations and in-hospital deaths and a lower percentage referred to hospice. We developed a Concurrent Hospice and Dialysis Program in which patients may receive palliative dialysis alongside hospice services. The Program aims to improve access to quality end-of-life care and, ultimately, improve the experiences of patients, caregivers, and clinicians. OBJECTIVES: We sought to describe (1) the Program and (2) enrollment and utilization characteristics of Program participants. METHODS: We conducted a quantitative description of demographics, patient characteristics, and utilization of Program enrollees. RESULTS: Of 43 total enrollees, 44% received at least one dialysis treatment, whereas 56% received no dialysis. The median (range) hospice length of stay was 9 (1-76) days for all participants and 13 (4-76) days for those who received at least one dialysis treatment. The average number of dialysis treatments was 3.5 (range 1-9) for hemodialysis and 19.2 (range 3-65) for peritoneal dialysis. Sixty-five percent of enrollees died at home, 23% in inpatient hospice, and 12% in a nursing facility; no patients died in the hospital. CONCLUSIONS: Our 3-year experience with the Program demonstrated that enrollees had a longer median hospice stay than the previously reported 5-day median for patients with ESKD. Most patients received no further dialysis treatments despite the option to continue dialysis. Our experience provides evidence to support future work testing the effectiveness of such clinical programs to improve patient and utilization outcomes.

Advance Care Planning Coaching in CKD Clinics: A Pragmatic Randomized Clinical Trial.

RATIONALE & OBJECTIVE: Although guidelines recommend more and earlier advance care planning (ACP) for patients with chronic kidney disease (CKD), scant evidence exists to guide incorporation of ACP into clinical practice for patients with stages of CKD prior to kidney failure. Involving nephrology team members in addition to primary care providers in this important patient-centered process may increase its accessibility. Our study examined the effect of coaching implemented in CKD clinics on patient engagement with ACP. STUDY DESIGN: Multicenter, pragmatic randomized controlled trial. SETTING & PARTICIPANTS: Three CKD clinics in different states participated: 273 patients consented to participate, 254 were included in analysis. Eligible patients were 55 years or older, had stage 3-5 CKD, and were English speaking. INTERVENTION: Nurses or social workers with experience in nephrology or palliative care delivered individualized in-person ACP sessions. The enhanced control group was given Make Your Wishes About You (MY WAY) education materials and was verbally encouraged to bring their completed advance directives to the clinic. OUTCOME: Primary outcome measures were scores on a 45-point ACP engagement scale at 14 weeks and a documented advance directive or portable medical order at 16 weeks after enrollment. RESULTS: Among 254 participants analyzed, 46.5% were 65-74 years of age, and 54% had CKD stage 3. The coached patients scored 1.9 points higher at 14 weeks on the ACP engagement scale (ß = 1.87 [95% CI, 0.13-3.64]) adjusted for baseline score and site. Overall, 32.8% of intervention patients (41 of 125) had an advance directive compared with 17.8% (23 of 129) of patients in the control group. In a site-adjusted multivariable model, coached patients were 79% more likely to have a documented advance directive or portable medical order (adjusted risk ratio, 1.79 [95% CI, 1.18-2.72]), with the impact principally evident at only 1 study site. LIMITATIONS: Small number of study sites and possible unrepresentativeness of the broader CKD population by study participants. CONCLUSIONS: Individualized coaching may be effective in enhancing ACP, but its impact may be influenced by the health care environment where it is delivered. FUNDING: The Patrick and Catherine Weldon Donaghue Medical Research Foundation, via the Greater Value Portfolio. TRIAL REGISTRATION: Registered at ClinicalTrials.gov with study number NCT03506087.

Opioid Management in CKD.

Patients with chronic kidney disease (CKD) experience a high pain and symptom burden. Concurrently, opioid prescription and use in patients with CKD continues to increase, leading to concern for opioid-related risks. Nephrologists increasingly face challenging clinical situations requiring further evaluation and treatment of pain, for which opioid use may be indicated. However, nephrologists are not commonly trained in pain management and may find it difficult to compile the necessary information and tools to effectively assess and treat potentially multidimensional pain. In these situations, they may benefit from using an evidence-based stepwise approach proposed in this article. We address current approaches to opioid use for pain management in CKD and offer a stepwise approach to individualized opioid assessment, focusing on kidney-specific concerns. This includes thorough evaluation of the pain experience, opioid use history, and treatment goals. We subsequently discuss considerations when initiating opioid therapy, strategies to reduce opioid-related risks, and recommended best practices for opioid stewardship in CKD. Using this sequential approach to opioid management, nephrologists can thereby gain a broad overview of key patient considerations, the foundation for understanding implications of opioid use, and a patient-tailored plan for opioid therapy.

Communication Skills Training for Nurses and Social Workers: An Initiative to Promote Interdisciplinary Advance Care Planning and Palliative Care in Patients on Dialysis.

Palliative care initiatives are needed in nephrology, yet implementation is lacking. We created a 6-hour workshop to teach the skills of active listening, responding to emotion, and exploring goals and values to nurses and social workers working in dialysis units. The workshop consisted of interactive didactics and structured role play with trained simulated patients. We assessed preparedness using a Likert scale and utilized paired t tests to measure the impact using a self-assessment survey following the training. Ten nurses and two social workers from six dialysis units completed the training. Mean scores improved in all domains: demonstrating empathic behaviors, responding to emotion and end-of-life concerns, eliciting family's concerns at end-of-life and patient's goals, and discussing spiritual concerns. Further testing in larger samples may help to confirm these results.

Use of a Supportive Kidney Care Video Decision Aid in Older Patients: A Randomized Controlled Trial.

BACKGROUND: There are few studies of patient-facing decision aids that include supportive kidney care as an option. We tested the efficacy of a video decision aid on knowledge of supportive kidney care among older patients with advanced CKD. METHODS: Participants (age ≥ 65 years with advanced CKD) were randomized to receive verbal or video education. Primary outcome was knowledge of supportive kidney care (score range 0-3). Secondary outcomes included preference for supportive kidney care, and satisfaction and acceptability of the video. RESULTS: Among all participants (n = 100), knowledge of supportive kidney care increased significantly after receiving education (p < 0.01); however, there was no difference between study arms (p = 0.68). There was no difference in preference for supportive kidney care between study arms (p = 0.49). In adjusted analyses, total health literacy score (aOR 1.08 [95% CI: 1.003-1.165]) and nephrologists' answer of "No" to the Surprise Question (aOR 4.87 [95% CI: 1.22-19.43]) were associated with preference for supportive kidney care. Most felt comfortable watching the video (96%), felt the content was helpful (96%), and would recommend the video to others (96%). CONCLUSIONS: Among older patients with advanced CKD, we did not detect a significant difference between an educational verbal script and a video decision aid in improving knowledge of supportive kidney care or preferences. However, patients who received video education reported high satisfaction and acceptability ratings. Future research will determine the effectiveness of a supportive kidney care video decision aid on real-world patient outcomes. TRIAL REGISTRATION: NCT02698722 (ClinicalTrials.gov).

Primary Care Physicians' Perceived Barriers to Nephrology Referral and Co-management of Patients with CKD: a Qualitative Study.

BACKGROUND: Effective co-management of patients with chronic kidney disease (CKD) between primary care physicians (PCPs) and nephrologists is increasingly recognized as a key strategy to ensure the delivery of efficient and high-quality CKD care. However, the co-management of patients with CKD remains suboptimal. OBJECTIVE: We aimed to identify PCPs' perceptions of key barriers and facilitators to effective co-management of patients with CKD at the PCP-nephrology interface. STUDY DESIGN: Qualitative study SETTING AND PARTICIPANTS: Community-based PCPs in four US cities: Baltimore, MD; St. Louis, MO; Raleigh, NC; and San Francisco, CA APPROACH: We conducted four focus groups of PCPs. Two members of the research team coded transcribed audio-recorded interviews and identified major themes. KEY RESULTS: Most of the 32 PCPs (59% internists and 41% family physicians) had been in practice for > 10 years (97%), spent ≥ 80% of their time in clinical care (94%), and practiced in private (69%) or multispecialty group practice (16%) settings. PCPs most commonly identified barriers to effective co-management of patients with CKD focused on difficulty developing working partnerships with nephrologists, including (1) lack of timely adequate information exchange (e.g., consult note not received or CKD care plan unclear); (2) unclear roles and responsibilities between PCPs and nephrologists; and (3) limited access to nephrologists (e.g., unable to obtain timely consultations or easily contact nephrologists with concerns). PCPs expressed a desire for "better communication tools" (e.g., shared electronic medical record) and clear CKD care plans to facilitate improved PCP-nephrology collaboration. CONCLUSIONS: Interventions facilitating timely adequate information exchange, clear delineation of roles and responsibilities between PCPs and nephrologists, and greater access to specialist advice may improve the co-management of patients with CKD.

A practical guide for the care of patients with end-stage renal disease near the end of life.

Most patients who rely on dialysis for treatment of end-stage renal disease (ESRD) never receive a kidney transplant. Therefore, it is important for nephrology providers to feel comfortable discussing the role of dialysis near the end of life (EOL). Advance care planning (ACP) is an ongoing process of learning patient values and goals in an effort to outline preferences for current and future care. This review presents a framework for how to incorporate ACP in the care of dialysis patients throughout the kidney disease course and at the EOL. Early ACP is useful for all dialysis patients and should ideally begin in the absence of clinical setbacks. Check-in conversations can be used to continue longitudinal discussions with patients and identify opportunities for symptom management and support. Lastly, triggered ACP is useful to clarify care preferences for patients with worsening clinical status. Practical tools include prognostication models to identify patients at risk for decline; ACP documents to operationalize patient care preferences; and communication guidance for engaging in these important conversations. Interdisciplinary teams with expertise from social work, palliative care, and hospice can be helpful at various stages and are discussed here.

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.

Reliability and Utility of the Surprise Question in CKD Stages 4 to 5.

BACKGROUND: Prognostic uncertainty is one barrier to engaging in goals-of-care discussions in chronic kidney disease (CKD). The surprise question ("Would you be surprised if this patient died in the next 12 months?") is a tool to assist in prognostication. However, it has not been studied in non-dialysis-dependent CKD and its reliability is unknown. STUDY DESIGN: Observational study. SETTING & PARTICIPANTS: 388 patients at least 60 years of age with non-dialysis-dependent CKD stages 4 to 5 who were seen at an outpatient nephrology clinic. PREDICTOR: Trinary (ie, Yes, Neutral, or No) and binary (Yes or No) surprise question response. OUTCOMES: Mortality, test-retest reliability, and blinded inter-rater reliability. MEASUREMENTS: Baseline comorbid conditions, Charlson Comorbidity Index, cause of CKD, and baseline laboratory values (ie, serum creatinine/estimated glomerular filtration rate, serum albumin, and hemoglobin). RESULTS: Median patient age was 71 years with median follow-up of 1.4 years, during which time 52 (13%) patients died. Using the trinary surprise question, providers responded Yes, Neutral, and No for 202 (52%), 80 (21%), and 106 (27%) patients, respectively. About 5%, 15%, and 27% of Yes, Neutral, and No patients died, respectively (P<0.001). Trinary surprise question inter-rater reliability was 0.58 (95% CI, 0.42-0.72), and test-retest reliability was 0.63 (95% CI, 0.54-0.72). The trinary surprise question No response had sensitivity and specificity of 55% and 76%, respectively (95% CIs, 38%-71% and 71%-80%, respectively). The binary surprise question had sensitivity of 66% (95% CI, 49%-80%; P=0.3 vs trinary), but lower specificity of 68% (95% CI, 63%-73%; P=0.02 vs trinary). LIMITATIONS: Single center, small number of deaths. CONCLUSIONS: The surprise question associates with mortality in CKD stages 4 to 5 and demonstrates moderate to good reliability. Future studies should examine how best to deploy the surprise question to facilitate advance care planning in advanced non-dialysis-dependent CKD.

Communication Skills and Decision Making for Elderly Patients With Advanced Kidney Disease: A Guide for Nephrologists.

Elderly patients comprise the most rapidly growing population initiating dialysis therapy and may derive particular benefit from comprehensive assessment of geriatric syndromes, coexisting comorbid conditions, and overall prognosis. Palliative care is a philosophy that aims to improve quality of life and assist with treatment decision making for patients with serious illness such as kidney disease. Palliative skills for the nephrology provider can aid in the care of these patients. This review provides nephrology providers with 4 primary palliative care skills to guide treatment decision making: (1) use prognostic tools to identify patients who may benefit from conservative management, (2) disclose prognostic information to patients who may not do well with dialysis therapy, (3) incorporate patient goals and values to outline a treatment plan, and (4) prepare patients and families for transitions and end of life.

A Nephrology Fellows' Communication Skills Course: An Educational Quality Improvement Report.

BACKGROUND: Nephrology fellows need expertise navigating challenging conversations with patients throughout the course of advanced kidney disease. However, evidence shows that nephrologists receive inadequate training in this area. This study assessed the effectiveness of an educational quality improvement intervention designed to enhance fellows' communication with patients who have advanced kidney disease. STUDY DESIGN: Quality improvement project. SETTING & PARTICIPANTS: Full-day annual workshops (2013-2014) using didactics, discussion, and practice with simulated patients. Content focused on delivering bad news, acknowledging emotion, discussing care goals in dialysis decision making when prognosis is uncertain, and addressing dialysis therapy withdrawal and end of life. Participants were first-year nephrology fellows from 2 Harvard-affiliated training programs (N=26). QUALITY IMPROVEMENT PLAN: Study assessed the effectiveness of an intervention designed to enhance fellows' communication skills. OUTCOMES: Primary outcomes were changes in self-reported patient communication skills, attitudes, and behaviors related to discussing disease progression, prognostic uncertainty, dialysis therapy withdrawal, treatments not indicated, and end of life; responding to emotion; eliciting patient goals and values; and incorporating patient goals into recommendations. MEASUREMENTS: Surveys measured prior training, pre- and postcourse perceived changes in skills and values, and reported longer term (3-month) changes in communication behaviors, using both closed- and open-ended items. RESULTS: Response rates were 100% (pre- and postsurveys) and 68% (follow-up). Participants reported improvement in all domains, with an overall mean increase of 1.1 (summed average scores: precourse, 2.8; postcourse, 3.9 [1-5 scale; 5 = "extremely well prepared"]; P<0.001), with improvement sustained at 3 months. Participants reported meaningful changes integrating into practice specific skills taught, such as "Ask-Tell-Ask" and using open-ended questions. LIMITATIONS: Self-reported data may overestimate actual changes; small sample size and the programs' affiliation with a single medical school may limit generalizability. CONCLUSIONS: A day-long course addressing nephrology fellows' communication competencies across the full course of patients' illness experience can enhance fellows' self-reported skills and practices.

Artificial intelligence for better goals of care documentation.

OBJECTIVES: Lower rates of goals of care (GOC) conversations have been observed in non-white hospitalised patients, which may contribute to racial disparities in end-of-life care. We aimed to assess how a targeted initiative to increase GOC documentation rates is associated with GOC documentation by race. METHODS: We retrospectively assessed GOC documentation during a targeted GOC initiative for adult patients with an artificial intelligence predicted elevated risk of mortality. Patients were admitted to an urban academic medical centre in Pittsburgh, Pennsylvania between July 2021 and 31 December 2022. RESULTS: The 3643 studied patients had a median age of 72 (SD 13.0) and were predominantly white (87%) with 42% admitted to an intensive care unit and 15% dying during admission. GOC documentation was completed for 28% (n=1019/3643). By race, GOC was documented for 30% black (n=105/351), 28% white (n=883/3161) and 24% other (n=31/131) patients (p=0.3933). There was no statistical difference in the rate of documented GOC among races over time (p=0.5142). CONCLUSIONS: A targeted initiative to increase documented GOC conversations for hospitalised patients with an elevated risk of mortality is associated with similar documentation rates across racial groups. Further research is needed to assess whether this initiative may promote racial equity in GOC documentation in other settings.

Shared Decision-Making and Patient Communication in Nephrology Practice.

Shared decision-making (SDM) is the standard of care for patient or surrogates and their clinicians to arrive at a medical decision. Evidence suggests that SDM increases patients' understanding of their illness and satisfaction with their decision-making process. Dialysis patients often report the perception that they were passive participants in the decision to start dialysis, suggesting further opportunities for enhancing the application of SDM in decision-making with patients with kidney disease. The hallmark feature of SDM is sensitive, culturally- and equity-informed communication and effective partnership between patient or surrogate and clinician. In the process, the patient's personal expertise in the realm of their values and priorities is elicited, and the clinician's medical expertise is shared. The integration of this shared expertise then leads to an informed treatment decision. Frameworks such as the Serious Illness Conversation Guide and REMAP are guides for the SDM process, and communication tools and mnemonics can help facilitate SDM conversations. This paper will address SDM in nephrology practice, reviewing underlying supportive evidence, context, and timing for employing SDM in the trajectory of chronic kidney disease and acute kidney injury, special considerations in vulnerable populations to promote health equity, and communication tools and frameworks to facilitate the SDM process. By learning and applying these frameworks and tools, nephrology providers will be able to employ SDM in the management of kidney disease.

Advanced Care Planning in Chronic Kidney Disease: Qualitative Impact of the MY WAY Intervention.

CONTEXT: Despite recommendations for shared decision-making and advanced care planning (ACP) for people with chronic kidney disease (CKD), such conversations are infrequent. The MY WAY educational and patient coaching intervention aimed to promote high-quality ACP. OBJECTIVES: This qualitative substudy sought to gain participant feedback on the MY WAY ACP coaching intervention, and how it impacted their wishes, perceptions of kidney care, and factors that helped them reflect on ACP. METHODS: We conducted semi-structured interviews with participants from the intervention arm of the MY WAY study about their prior experience with ACPs in the context of CKD, impressions of the MY WAY intervention, and outcomes of the MY WAY intervention. We conducted a qualitative thematic analysis of transcribed interviews. RESULTS: Among 15 intervention participants, the following major themes emerged: 1) Patients with CKD approach ACP with varied experiences; 2) Patients felt the MY WAY coaching intervention supported ACP by reinforcing values; and 3) Patients found the coaching intervention focused on end of life, but not necessarily on decision making regarding CKD. CONCLUSION: Participants perceived the coaching intervention to have high utility in facilitating ACP, but had a limited impact on CKD-specific decision-making. These findings suggest that the coach plays a crucial role in comfort with ACP conversations and that ACP readiness and engagement may not correlate with treatment preferences or understanding of CKD treatment decisions.

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

PURPOSE OF REVIEW: Existing 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 FINDINGS: We 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 patient's 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 patient's goals and preferences. SUMMARY: We 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 patient's experience of illness. Finally, we explain how an understanding of an individual patient's 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.