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.

Hospice Care in Conservative Kidney Management.

Hospice care offers multidisciplinary expertise to optimize symptom management and quality of life for patients with limited life expectancy and help ensure that patients receive care that reflects their personal goals and values. Many patients receiving conservative kidney management (CKM) and their loved ones can benefit from the additional support that hospice provides, particularly as symptom burdens and functional status worsen over the last few months of life. We provide an overview of hospice services and how they may benefit patients receiving CKM, describe the evolution of optimal CKM strategies and collaboration between nephrology and hospice clinicians over the course of disease progression, and explore challenges to effective hospice care delivery for patients with chronic kidney disease and how to address them.

Delivery of Active Medical Management without Dialysis through an Embedded Kidney Palliative Care Model.

Background: Patients with CKD have high symptom burden, low rates of advance care planning (ACP), and frequently receive care that is not goal concordant. Improved integration of palliative care into nephrology and access to active medical management without dialysis (AMMWD) have the potential to improve outcomes through better symptom management and enhanced shared decision making. Methods: We describe the development of a kidney palliative care (KPC) clinic and how palliative care practices are integrated within an academic nephrology clinic. We performed a retrospective electronic health record (EHR) review for patients seen in this clinic between January 2015 and February 2019 to describe key clinical activities and delivery of AMMWD. Results: A total of 165 patients were seen in the KPC clinic (139 with CKD and 26 who were already receiving dialysis). Fatigue, mobility issues, and pain were the three most prevalent symptoms (85%, 66%, 58%, respectively). Ninety-one percent of patients had a surrogate decision maker documented in the EHR; 87% of patients had a goals-of-care conversation documented in the EHR. Of the 139 patients with CKD, 67 (48%) chose AMMWD as their disease progressed. Sixty-eight percent (41 of 60) of patients who died during the study were referred to hospice. Conclusions: Our findings suggest that the integration of palliative care into nephrology can assist in identification of symptoms, lead to high rates of ACP, and provide a mechanism for patients to choose and receive AMMWD. The percentage of patients choosing AMMWD in our study suggests that increased shared decision making may lower rates of dialysis initiation in the United States. Additional prospective research and registries for assessing the effects of AMMWD have the potential to improve care for people living with CKD.

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.

NephroTalk Multimodal Conservative Care Curriculum for Nephrology Fellows.

Conservative care, a comprehensive treatment path for advanced kidney disease most suitable for individuals unlikely to benefit from dialysis, is underutilized in the United States. One reason is an absence of robust education about this approach and how to discuss it with potential candidates. To address this need, we developed a multimodal conservative care curriculum for nephrology fellows. This curriculum consists of four online modules that address essential concepts and communication skills related to conservative care. It is followed by an in-person, interactive, "flipped classroom" session facilitated by designated nephrology educators at participating Accreditation Council for Graduate Medical Education nephrology training programs. Curriculum effect was assessed using surveys completed by participating fellows immediately before and following the curriculum and for participating nephrology educators following flipped classroom teaching; 148 nephrology trainees from 19 programs participated, with 108 completing both pre- and postcurriculum surveys. Mean self-reported preparedness (measured on a five-point Likert scale) increased significantly for all ten concepts taught in the curriculum. The mean correct score on eight knowledge questions increased from 69% to 82% following the curriculum (P<0.001). Fellows rated the curriculum highly and reported that they plan to practice skills learned. For the 19 nephrology program educators, the mean perceived preparedness to teach all curriculum domains increased after, compared with before, facilitating the flipped classroom, reaching significance for seven of the ten concepts measured. Data suggest that fellows' participation in a multimodal curriculum increased knowledge and preparation for fundamental conservative care concepts and communication skills. Fellows rated the curriculum highly. Educator participation appears to have increased preparedness for teaching the curriculum concepts, making it likely that future education in conservative care will become more widespread. Herein, we describe the curriculum content, which we have made publicly available in order to encourage broader implementation, and its effect on participating fellows and the nephrology educators who facilitated it.

Developing the family support tool: An interactive, web-based tool to help families navigate the complexities of surrogate decision making in ICUs.

INTRODUCTION: Although family members of incapacitated, critically ill patients often struggle in the role of surrogate decision maker, there are no low-cost, easily-scaled interventions to address this problem. AIM OF THE STUDY: To develop and pilot-test the Family Support Tool, an interactive, web-based tool to help individuals navigate the complexities of surrogate decision making in ICUs. MATERIAL AND METHODS: We used a mixed methods, user-centered process to create the Family Support Tool, including: 1) creation of a preliminary design by an expert panel; 2) engagement of a key stakeholder panel to iteratively refine the preliminary design; 3) user testing of a low-fidelity prototype of the tool by 6 former ICU surrogates; 4) creation of a web-based prototype; and 5) user testing of the web-based prototype with 14 surrogates and ICU physicians, including semi-structured interviews and quantitative measurement of usability, acceptability, and perceived effectiveness. RESULTS: The initial design contained a collection of videos and exercises designed to help individuals understand the surrogate's role and think through the patient's values and preferences. Based on family stakeholders' feedback about the emotional overwhelm they experience early in an ICU stay, we redesigned the tool to be viewed in sections, with the first section focused on decreasing surrogates' emotional distress, and later sections focused on helping surrogates prepare for family meetings. Surrogates actively making decisions in the ICU judged the final tool to be highly usable (mean summary score 83.5, correlating to 95th percentile when normalized to devices of its type), acceptable (mean 4.2 +/- 0.5 out of 5), and effective (mean 4.3 +/- 0.6 out of 5). All surrogates reported the tool helped them consider goals of care and all indicated they would recommend the tool to a friend. CONCLUSIONS: We successfully developed a web-based tool to help individuals navigate the complexities of surrogate decision making in ICUs that has high potential for scalability. Surrogates judged the tool to be usable, acceptable, and effective. These data support proceeding to test the tool in a pilot randomized clinical trial.

Effectiveness of a Wellness Program for Individuals With Spina Bifida and Spinal Cord Injury Within an Integrated Delivery System.

OBJECTIVE: To determine whether an evidence-based wellness program for individuals with spina bifida and spinal cord injury would improve health outcomes and patient experience of care, result in a positive return on investment (ROI), and provide evidence for scalability. DESIGN: Nonrandomized, noncontrolled cohort study; 2 years of enrollment. SETTING: Academic hospital-based outpatient physiatry clinic partnered with an insurance division within an integrated health care delivery and financing system. PARTICIPANTS: Individuals (N=69) with spina bifida and spinal cord injury were consented; 4 were excluded (5.7%), and the remaining 65 (94.2%) participated in the intervention. INTERVENTIONS: Evidence-based wellness program consisting of care coordination from a mobile nurse, patient education, and patient incentives. MAIN OUTCOME MEASURES: Validated measures of function, mood, quality of life, and perception of care delivery; knowledge of preventable conditions; self-rating of health; and utilization and cost. RESULTS: Improvements in all main outcome measures were seen after 2 years of enrollment. Although cost in year 1 of enrollment increased because of hospitalizations and the overall ROI was negative, a small positive ROI was seen in year 2 of enrollment. CONCLUSIONS: Participation in an evidence-based wellness program was associated with improved health and experience of care. Scaling the program to larger numbers may result in an overall positive ROI.