Recommendations for Public Policy Changes to Improve Supportive Care for Seriously Ill Patients With Kidney Disease

Abstract

on behalf of the Steering Committee of the Coalition for Supportive Care of Kidney Patients National and international nephrology organizations have identified substantial unmet supportive care needs of patients with kidney disease and issued recommendations. In the United States, the most recent comprehensive effort to change kidney care, the Advancing American Kidney Health Initiative, does not explicitly address supportive care needs, although it attempts to implement more patientcentered care. This Perspective from the leaders of the Coalition for Supportive Care of Kidney Patients advocates for urgent policy changes to improve patient-centered care and the quality of life of seriously ill patients with kidney disease. It argues for the provision of supportive care by an interdisciplinary team led by nephrology clinicians to improve shared decision-making, advance care planning, pain and symptom management, the explicit offering of active medical management without dialysis as an option for patients who may not benefit from dialysis, and the removal by the Centers for Medicare & Medicaid Services and all other payors of financial and regulatory disincentives to quality supportive care, including hospice, for patients with or approaching kidney failure. It also emphasizes that all educational and accreditation programs for nephrology clinicians include kidney supportive care and its essential role in the care of patients with kidney disease.Complete author and article information (including a list of the members of the Steering Committee of the Coalition for Supportive Care of Kidney Patients) provided before references.

Pathways Project Pragmatic Lessons Learned: Integrating Supportive Care Best Practices into Real-World Kidney Care

“…Finally, the CMS policies and financial incentives discourage dialysis centers from implementing KSC best practices that address the known unmet palliative care needs of patients with kidney failure. 11 , 39 For example, the ESKD Quality Incentive Program would penalize dialysis centers by reducing payments to them for a low score on a minimum total performance score on quality measures because they—for quality of life considerations—allow SI patients to dialyze with a catheter and have a low dialysis adequacy measure because they cannot tolerate a full dialysis treatment. 40 Nephrologists participating in Pathways candidly admitted that financial disincentives in the ESKD Quality Incentive Program inhibited offering palliative dialysis, although patients might want it.…”

“…Yet, other than a rise in the proportion of patients with kidney failure accessing hospice, 10 there is no indication of widespread adoption in the United States. 11 We hypothesized that a key barrier to achieving guideline recommendations was lack of implementation guidance. The Institute for Healthcare Improvement (IHI) Collaborative Model for Achieving Breakthrough Improvement 12 has been effective in fostering adoption of best practices in numerous health care settings.…”

“…Yet, other than a rise in the proportion of patients with kidney failure accessing hospice, 10 there is no indication of widespread adoption in the United States. 11 …”

Kidney Supportive Care in Peritoneal Dialysis: Developing a Person-Centered Kidney Disease Care Plan

“…Over the past decade, Kidney Supportive Care has become an increasingly recognized, central aspect in advancing the care of patients with kidney failure and earlier stages of chronic kidney disease (CKD). [1,2,3] Kidney supportive care-also termed "Kidney Palliative Care," "Renal Supportive Care," or "Renal Palliative Care" in various clinical or research settings-integrates palliative medicine principles in nephrology and focuses on providing an individualized approach to shared decision-making (SDM), which is applied throughout the course of advanced CKD and dialysis decision-making. [4,5,6] At its core, kidney supportive care is the delivery of person-centered kidney disease care and the corresponding development of a person-centered kidney care plan.…”

“…[1,9] On a policy level, implementation of person-centered care in kidney disease management still requires substantial adjustments in financial structures and quality measures. [2] In clinical practice, misconceptions may be even greater barriers to the implementation of J o u r n a l P r e -p r o o f kidney supportive care. First, kidney supportive care is not limited to end-of-life care, although the care of actively dying patients includes symptom control and family support which are fundamental elements of kidney supportive care.…”