The Mid-Atlantic Renal Coalition (MARC) has received a 15-month grant from the Gordon and Betty Moore Foundation to support the development of evidence-based best practices for delivering person-centered palliative care to patients with chronic kidney disease. The program, named the Pathways Project, will develop tools to establish pathways to conservative non-dialytic management, palliative care throughout the continuum of kidney disease, and dialysis withdrawal for those patients who choose to stop dialysis.
The Pathways Project will build on the work the Coalition for Supportive Care of Kidney Patients (CSCKP) has been sponsoring since 2005. Dale Lupu, MPH, PhD, associate research professor at George Washington University and principal of Daleview Associates, and Alvin Moss, MD, chairperson of the CSCKP, and professor of medicine at West Virginia University, are co-principal investigators.
“We know that for some elderly patients with multiple comorbidities there may be limited survival advantage with dialysis and that these patients may have a better quality of life with conservative management,” said Moss. “But the pathway for these patients is not clearly defined or understood.” Moss said about 20% of patients withdraw from dialysis each year, and it is difficult for the dialysis clinic staff to have these conversations with patients.
MARC is convening a Technical Expert Panel representing nephrology, palliative care, hospice, communication, and policy as well as experts who have accomplished change in other care settings. The Institute for Healthcare Improvement will serve on the panel and will facilitate and support the work of identifying best practices and making those operational for the CKD environment.
“We hope that tools and resources can be assessed and developed to facilitate this important aspect of patient-centered care,” said Lupu. The Pathways Project will also focus on timely delivery of primary and specialty palliative and supportive care for the entire continuum of care.
“There is so much need for more supportive care, said Lupu. “Patients are hungry for it, staff want to provide it, nephrologists and nurses are eager to improve their skills. Now we’re going to be able to help them do that.”