HUNTINGTON BEACH, California — A new initiative aimed at making more patients and dialysis staff aware of supportive care has made some inroads among dialysis providers in the program.
The Pathways Project is funded by the Gordon and Betty Moore Foundation and was developed by the Coalition for Supportive Care for Kidney Patients. The coalition was established in 2003 by the MidAtlantic Renal Coalition and is now part of Quality Insights Renal Network 5.
The project is being implemented in 11 dialysis clinics owned by Atlantic Dialysis Services, American Renal Associates, Rogosin Institute and the Washington, D.C. Veterans Affairs Medical Center. Three CKD clinics are also involved in the project. The dialysis providers have instituted “lobby days” where patients and families can become educated on advanced care planning.
“In a people-centered culture, patients want their symptoms managed. They want you to ask what matters to them. They don’t want to feel that they are being put on a conveyer belt with no exit ramp,” Dale Lupu, MPH, PhD, associate research professor at George Washington University, told attendees here. “We think supportive care is a way to help patients move to what matters most.”
The objective of the project, Lupu said, is to develop evidence-based recommendations designed to bring about improvements in the supportive care of patients with kidney disease. Interventions include:
- identification of seriously ill patients with CKD and ESKD, a high-need group;
- implementation of shared decisionmaking to understand their needs and values;
- offers of advanced care planning and symptom management; and
- offers of palliative dialysis and systematic withdrawal.
Lupu said seriously ill patients are often frail, functionally impaired, have other serious comorbidities beyond ESKD and are at an advanced age with a very high risk of death in 6 to 12 months.
“About 20% of CKD and ESRD patients are seriously ill,” Lupu said. These patients also have a high caregiver burden. “There is a high intensity of care at the end of life,” she said.
Part of the objective of the Pathways Project, Lupu said, is to also identify the goals of patients at this advanced age. Most often, patient goals, which can include maintaining independence, staying alive, reducing pain and reducing other symptoms, differ from providers’ perceptions about patients’ top priorities.
The Pathways Project would establish measures of transitions near the end of life, which would include needed hospitalizations, emergency department visits, palliative dialysis, discontinuing dialysis, hospice admissions and the patient’s preferred site of death.
The difficult part of implementing a new program like the Pathways Project is fitting it into the dialysis schedule.
“Everyone is so busy in the dialysis setting,” Glenda Harbert, RN, CNN, CPHQ, who is partnering with Lupu on implementing the Pathway Project. “This is something new and different and it does take some time. We are working with clinic staff to hardwire this program into their schedule, so it becomes part of their daily routine.”
Likewise, every facility needs a champion for the program, Harbert said. “We are finding that not all nephrologists are good at [supportive care]; they are not comfortable with it, but every site does need a physician champion,” she said. –by Mark E. Neumann
Reference: Lupu D and Harbert G. Expanding the menu choices: Person-centered care for seriously ill patients on dialysis. Presented at: National Renal Administrators Association Annual Conference; Oct. 2-4, 2019; Huntington Beach, California.
Disclosures: Lupu and Harbert report no relevant disclosures.