History of the Coalition for Supportive Care of Kidney Patients
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, which promoted effective interchange among patients, families, caregivers, payers, and providers in support of integrated patient-centered end-of-life care for chronic kidney disease patients.
In 2013, Coalition members voted to change its name from the Kidney End-of-Life Coalition to the Coalition for Supportive Care of Kidney Patients. Along with the name change, came and expand mission: to promote effective interchange among patients, families, healthcare professionals, and payers to ensure the provision of patient-centered supportive care for patients with kidney disease. Supportive care is the continuum of palliative care and includes providing patients with relief from the symptoms, pain, and stress of a serious illness. The goal of the Coalition is to improve the quality of life for both patients and families from the time of diagnosis through to end-of-life care.
The Coalition convened two meetings in 2013 with representatives of renal related and palliative care organizations with the aim of discussing the current state of renal palliative care and developing a strategic approach to achieving the mission: To promote effective interchange among patients, families, healthcare professionals, and payers to ensure the provision of patient-centered supportive care for patients with kidney disease. Read the Coalition’s Strategic Plan.
The 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), National Kidney Foundation (NKF), 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.