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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.
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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.
Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Falência Renal Crônica , Humanos , Qualidade de Vida , Cuidados Paliativos , RimRESUMO
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.
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Falência Renal Crônica , Diálise Renal , Humanos , Estados Unidos , Cuidados Paliativos , Estudos Retrospectivos , Estudos Prospectivos , RimRESUMO
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.