History of the Coalition
The Coalition began thanks to the patient voice in the early 2000s, and to this day we continue to listen, engage and support those with kidney disease, their caregivers, and clinicians.
Nancy Armistead, a Coalition Executive Committee member and one of the founders of the Coalition, tells the story of how the organization began and transformed over the years to meet the needs of patients everywhere.
The End-Stage Renal Disease (ESRD) Networks were established to promote quality care within the ESRD program and to serve as a liaison between the federal government, as the program’s funder, and the dialysis centers as providers of services.
Early in the program, many Networks established Patient Advisory Committees to provide the patients’ perspective on Network activities and to promote patient centered care. These Committees offered unique insights and views that were not available through Network Medical Review Boards or Board of Directors.
A frequent criticism Committee members presented was, “Staff don’t tell us when a patient dies. They don’t understand that we’re family.” It was clear that many staff members were not comfortable talking about death or didn’t have the words to convey such news. Also received were calls complaining, “Mom is not doing well on dialysis and says she ready to give it up, but her doctors are encouraging to keep trying. Can you help?” Discontinuing dialysis or recommending palliative or supportive care were not frequent options for patients.
These challenges made it clear that not enough was being done to support patients in their end-of-life decisions.
The Mid-Atlantic Renal Coalition (MARC), serving as ESRD Network 5, was fortunate to have Alvin Moss, MD practicing in the Network area. A nationally recognized expert in nephrology and palliative care, Dr. Moss is the Director of the West Virginia University Center (WVU) for Health Ethics and Law at the West Virginia University Health Sciences Center in Morgantown, West Virginia. In the School of Medicine at WVU, he holds an appointment as a Professor of Internal Medicine in the Sections of Nephrology and Geriatrics, Palliative Medicine and Hospice. Dr. Moss served as Chairman of Network 5’s Medical Review Board and worked closely with the Network on several initiatives.
In 2000, he chaired the American Society of Nephrology and Renal Physicians Association workgroup that wrote and then revised the clinical practice guideline, Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, which was published in its second edition in 2010.
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, through focus groups and literature reviews, found that many dialysis corporations have policies that do not respect the wishes of dialysis patients, and one even prohibits patients 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.
Building on these recommendations, MARC petitioned CMS for funding to sponsor a national workshop aimed at ESRD Networks, and those in the nephrology community with an interest in palliative/supportive care. It was hoped that end-of-life care would be recognized as an essential component of a quality improvement program. The 2003 workshop was attended by over 250 individuals who were inspired by the keynote presenter, Dr. Ira Byock.
Following this meeting, MARC 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. The Coalition continued to sponsor events in conjunction with national meetings which allowed those practicing in the field to exchange information on their research interests, identify areas of need that might be addressed at the national level and to share best practices. Through MARC, the Coalition maintained a resource-rich website, promoted advance care planning tools and developed a pain management algorithm.
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 an expanded 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.
Coalition membership continues to increase and includes dialysis clinicians, patients and family members, hospice caregivers, attorneys, and others who are considered experts in the field. The Coalition and its Executive Committee are leading and publishing on major research projects with real-world impact. As the network grows, the Coalition is also piloting new ways to share its learnings around the globe to instill supportive care practices everywhere possible.