History of the Kidney-End-of-Life Coalition

The Renal Physicians Association (RPA) released “Shared Decision Making in the Appropriate Initiation of and Withdrawal from Dialysis” in 2000. In the fall of 2002, the Robert Wood Johnson Foundation sponsored an End-Stage Renal Disease (ESRD) workgroup to make recommendations on promoting excellence at the end of life. The workgroup extensively studied the literature and held focus groups to further identify the needs of the field. The workgroup found that many dialysis corporations have policies that do not respect the wishes of dialysis patients, and one prohibits them from refusing to undergo cardiopulmonary resuscitation (CPR). They found that the literature on end of life with dialysis patients is inadequate, and there is a lack of correct information about the process of dying.

The workgroup recommended that the Centers for Medicare and Medicaid Services (CMS) work in conjunction with ESRD Networks to “develop manuals and training for clinicians regarding the coordination and linkage of dialysis and hospice care for ESRD patients.” They recommended that there be a curriculum developed on end-of-life care for nephrologists, nurses, social workers, dietitians, and technicians. Finally, the workgroup recommended that Networks incorporate end-of-life care into their educational outreach sessions, and also conduct educational sessions for dialysis providers on medical, ethical, legal, and practical issues surrounding CPR in the dialysis unit.

Network 5 embraced the workgroup’s recommendation that Networks incorporate end-of-life care into their activities and endorsed the concept that end-of-life care is an essential component of a quality improvement program.

Network 5 formed the Kidney End-of-Life Coalition that strives to promote effective interchange between patients, families, caregivers, payers, and providers in support of integrated patient-centered end-of-life care for chronic kidney disease patients.

The Kidney End-of-Life Coalition is supported by the Large Dialysis Organizations (LDOs), Renal Physicians Association (RPA), National Hospice and Palliative Care Organization (NHPCO), Centers for Medicare & Medicaid Services (CMS), and American Kidney Fund (AKF). Coalition members include dialysis clinicians, patients and family members, hospice caregivers, attorneys, and others who are considered experts in the field. The members serve on a number of workgroups and the steering committee, and participate in discussions on the Coalition's listserv. If you would like to become a member, please contact us.

Coalition Workgroups

Advance Care Planning (currently inactive)
CPR-DNR (currently inactive)
Patient Education (currently inactive)
Physician/Clinician Education (active)
Hospice (active)
Website Review Committee (active)

Organizations affiliated with the Coalition include:

Alice Hyde Medical Center
American Kidney Fund
American Nephrology Nurses' Association
Capital Hospice
Carle Clinic
Centers for Medicare & Medicaid Services
DaVita
DaVita Patient Citizens
DSI Renal, Inc.
ESRD Network of Texas, Inc.
Evercare Hospice & Palliative Care
Forum of ESRD Networks
Fresenius Medical Care
Hospice of Dayton
Hospice of Hope
McCarter & English, LLP
Medical Center of South Arkansas
Mid-Atlantic Renal Coalition
National Hospice and Palliative Care Organization
National Kidney Foundation
National Kidney Foundation, Council of Nephrology Social Workers
National Kidney Foundation, Council of Nephrology Nurses and Technicians
National Renal Administrators Association
Odyssey Hospice
PeerPoint Medical Education Institute
Renal Physicians Association
Renal Support Network
VistaCare Hospice
West Virginia University
Western New England Renal and Transplant Associates

Affiliates revised August 2009