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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., Competing Interests: A.E. Bansal reports being employed by University of Pittsburgh Medical Center, and receiving honoraria from UpToDate. N.C. Ernecoff reports being employed by the RAND Corporation. J.O. Schell reports having other interests in, or relationships with, Dialysis Clinic, Inc. (as palliative care advisor, receive salary support); receiving research funding from Palliative Care Research Collaborative; and being employed by University of Pittsburgh Medical Center; and receiving honoraria from UpToDate. The remaining author has nothing to disclose., (Copyright © 2022 by the American Society of Nephrology.)

Many patients with chronic kidney disease (CKD) and end-stage renal disease have unmet palliative care (PC) needs. Physical and emotional symptoms are common. Some, like uremia and fluid overload, improve with dialysis, but the increasing age of patients initiating renal replacement therapy leaves many untreatable comorbidities like dementia and frailty to negatively impact quality of life. Written by nephrologists and PC clinicians, this article will help PC providers to have a richer understanding of kidney disease-related symptom burden, disease trajectory, prognosis, and barriers to hospice enrollment for patients with CKD and end-stage renal disease.

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., (© 2018 Wiley Periodicals, Inc.)