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 EOL Coalition is made up of representatives from all of the Large Dialysis Organizations (LDOs), RPA, the National Hospice and Palliative Care Organization (NHPCO), CMS, attorneys, and others who are considered experts in the field. Click here to see a complete list of Coalition members.

Steering Committee
Alvin Moss, MD, Chairman
Nancy Armistead, MPA
Susan Bray, MD
Malene Davis, RN, MBA, MSN
Kathleen Egan
Michael Germain, MD
Jean Holley, MD
Karren King, MSW, ACSW, LCSW
Jenny Kitsen
Wendy Funk Schrag, LMSW, ACSW
Rebecca Schmidt, DO, FACP

Hospice Workgroup
Malene Davis, RN, CHPN, MBA, MSN, Co-Chair
Rebecca Schmidt, DO, FACP, Co-Chair
Orell Jackson
Terri Deutsch
Dianne Halderman, RN, CHPN
Glenda Harbert, RN, CNN, CPHQ
Matthew Kehlmeier
Alvin Moss, MD

Advance Care Planning Workgroup
Susan Bray, MD, Co-Chair
Karren King, MSW, Co-Chair
Sandie Dean, MSW, LICSW
Betty Grandison, LCSW-C
Pam Haverman
Bobby Knotek, BSRN, CNN, CPHQ
Jack Lombard, JD
Condict Martak
Lynn Poole, FNP-BC, CNN
Janis Price, RN, CNN

CPR Workgroup
Dick Goldman, MD, Co-Chair
Wendy Schrag, LMSW, ACSW, Co-Chair
Dotti Adams, RN
Renee Bova-Collis, MSW, LCSW
Shelia Deziel
Duane Dunn, MSW
Dianne Garrand
Nancy Gregory
Jack Lombard, JD
Stephen Roberts
Barbara Weaner, RN, FNP

Physician Education Workgroup
Michael Germain, MD, Co-Chair
Jean Holley, MD, Co-Chair
Donald Moloney, MD
Fernando Raudaius, MD
Lynn Poole, FNP-BC, CNN
Candice Walworth, MD

Patient Education Workgroup
Dawn Dungan
Charles Schleifer, MD
Douglas Robertson, PhD
Judith Robertson, MD
Myron Zayon
Phil Pinckard, MDiv
Donald Dowe, MSW
Cristi Cousins, MEd
Nancy Armistead, MPA