spring 2019 bY erin julius
A study titled the Pathways Project may ultimately impact as many as 100,000 kidney patients in the United States.
GW Nursing’s Dale Lupu is co-principal investigator on a $2.4 million grant aimed at improving the quality of care for seriously ill patients who have kidney disease.
“This project will find ways they can have better support and care through the entire course of illness. It’s not only about dying; it’s about making the care more patient-centered from the moment of diagnosis,” said Dr. Lupu, an associate research professor.
Kidney patients in the U.S. face a deficit in supportive care, also known as palliative care. They are rarely offered alternatives to dialysis, which may not extend life for patients already frail from other conditions. Instead, they often face obstacles if they say that they value quality of life or wish for a peaceful death rather than multiple trips to the hospital and ICU at the end of life. Families of dialysis patients rate the quality of their loved ones’ end-of-life care worse than families of those with cancer and other chronic conditions. The Pathways Project seeks to change that.
While other countries offer disease management for end-of-life renal patients without dialysis, treatment in the U.S. has typically been more aggressive.
The second phase of the Pathways Project, based at GW Nursing in collaboration with West Virginia University, began in November 2018 and focuses on the implementation of best practices. This phase will address the project’s central research question of whether a quality improvement approach to spreading supportive care best practices at dialysis centers and affiliated clinics will measurably increase the provision of supportive care best practices.
“We are so pleased that the Pathways Project has found a home here at GW Nursing. This important research will make a positive impact on kidney patients and their families,” said Dean Pamela Jeffries.
Experts have put out a number of guidelines and articles calling for more supportive kidney care, Dr. Lupu said. Now health care providers will figure out how to implement them, she said.
“It’s about the nitty-gritty details of making new models of care and of figuring out what actually works to deliver more patient-centered care,” Dr. Lupu said.
“We are working with the leading dialysis centers and teams in their communities,” said Dr. Lupu. “These are centers that are willing to innovate, to risk trying something new.”
Findings from the Pathways Project will also be relevant for other specialties, such as cardiology, that seek to include more primary palliative care into their care models.
The Pathways Project is the first attempt to implement supportive care at multiple sites in the United States. Other countries including Canada, Australia and Great Britain are implementing supportive care.
In the first phase, the Pathways Project developed 14 evidence-based best practice recommendations designed to improve supportive care delivery for patients with kidney disease. A technical expert panel defined the ideal care system for seriously ill patients with kidney disease.
In this ideal patient-centered system, patient preferences, goals and values are discussed and respected, patients receive treatment in keeping with their goals, and patients and families receive support, resources and assistance to help them prepare for end-of-life care.
The Pathways Project is funded by the Gordon and Betty Moore Foundation.