Dale Lupu, a George Washington University School of Nursing associate research professor, is leading a project that aims to revolutionize the type of end-of-life care available to elderly kidney disease patients.
Dr. Lupu launched the collaborative Pathways Project in January 2017 to determine the best practices for delivering palliative care to patients older than 75. Palliative care, or supportive care, focuses on pain and symptom relief, including psychological, social and spiritual sources of distress. Treating kidney disease with dialysis can be hard on elderly patients who may be frail or sick with more than one chronic condition. Dialysis may not extend their lives and can also reduce their quality of life.
The project is focused on transforming kidney care so that treatment aligns with patient goals. An estimated 37 million adults in the United States have chronic kidney disease—about 15 percent of the population. It’s important to find ways to deal with kidney disease that reflect the desires of every patient, Dr. Lupu said.
“It’s customizing the care, but we need to know what people want. We can’t just assume that because you are older you want it a certain way,” Dr. Lupu said. “We really have to ask them...to let the patient voice be heard and to drive the care they are getting.”
In the first phase, an interdisciplinary team of researchers developed 14 evidence-based best practice recommendations designed to improve supportive care. A technical expert panel also defined the ideal care system for seriously ill patients with the disease.
In October, Dr. Lupu received a $2.4 million grant from the Gordon and Betty Moore Foundation to launch the second phase of this project. The second phase, which is based at GW Nursing in collaboration with West Virginia University, focuses on the implementation of best practices. Researchers are seeking to answer the study’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.
Fifteen teams of care providers from across the country are using the guidelines as a framework to build innovative care pathways for patients. At the end of the study, the teams will evaluate how effective the 14 recommendations are in addressing the challenges in a clinical setting. As part of phase two, care team members recently came to GW for training on how to engage in and document “goals of care” conversations with patients, Dr. Lupu said.
“It’s one thing to have guidelines out there, this is what you should be doing, but what is really important is how do you integrate this into your care. How do you change the system, the culture, the skills, the expectations so that we can customize care so that it meets what these seriously ill patients want,” she said.
This study 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 these practices, but how to integrate supportive care into the U.S. care ecosystem is still unknown. American dialysis centers tend to have rigid treatment schedules and strict quality measures that can make it difficult to implement divergent treatment plans for patients that want supportive care.
One goal of the second phase is to build on the 14 best practice recommendations and better understand any barriers that would affect implementation. Researchers will get framework evaluations from phase two by the end of 2020, and in 2021 they will focus on distilling what they learned and bringing their best practices to the larger community of care providers, Dr. Lupu said.
Findings from the Pathways Project could also be useful to specialists seeking ways to integrate more primary palliative care into treatment models for patients with other diseases.
