Wrenching personal experiences first interested Dale Lupu, research professor in George Washington University’s School of Nursing, in end-of-life issues. When two of her closest friends faced terminal illnesses, she learned how important it is to respect the individual’s choices—whatever they are.
Now, the Patient-Centered Outcomes Research Institute (PCORI) has announced a five-year, $12 million contract for Lupu to lead a multidisciplinary, multi-institutional study designed to improve shared decision-making and patient choice for people with kidney failure.
Lupu is working with nine nephrology organizations in more than 20 locations across the country. To support her work with nephrologists, nurses, social workers and others on what she calls an “amazing team,” Lupu has been authorized for funding by PCORI, a government-sponsored nonprofit organization dedicated to helping patients, clinicians and policymakers make more informed decisions.
The default treatment option for people with kidney failure is dialysis, which filters impurities from the blood when kidneys are no longer functioning properly. Some patients with kidney failure will receive kidney transplants and are managed with dialysis while waiting for a donor organ to become available. In the United States, an extraordinarily large number of patients are treated with dialysis, even at advanced ages
“What we have discovered over the years,” Lupu said, “is that if you are frail, dialysis is not necessarily going to be life-extending.”
Undergoing dialysis can be burdensome to the point of exhaustion. Typically, patients receiving traditional in-center dialysis spend half a day, three days a week getting the treatment—even though not all of them will benefit much. Older and more frail patients typically have other medical problems, and as such dialysis has reduced ability to improve their quality of life.
“Many people regret going on dialysis,” Lupu said. “And they don’t realize that they actually had a choice. There's just this assumption that everybody's going to want to do it.”
These patients have been guided on a default path toward the treatment they are undergoing as a result of what Lupu calls the “dialysis imperative” in medical care.
But there are alternatives. Palliative dialysis, provided on an individualized schedule, enables patients to extend their lives long enough to reach goals that are important to them, perhaps traveling or attending a grandchild’s graduation or wedding. Another reasonable choice for some people is active management of a patient’s symptoms without dialysis, sometimes called conservative kidney management, while preparing the patient and family for the end of life. The optimal choice in a given situation depends on the values of individual patients and their families.
“The key thing is people's values,” Lupu said. “What do they want? If there's a frail 92-year-old who says, ‘It's really important to me to do everything,’ we have the resources, in our country, to make that available. But if a person says, ‘Keep me out of the hospital, I want to be home every minute I can,’ we should work just as hard to make that possible. We are not advocating that somebody else make that decision. We're advocating that patients and families make it.”
Lupu’s new project grows logically out of the work she has been doing for the past decade, searching for ways to train nephrologists to communicate better with their patients about the choices available to them. In a shared decision-making model, the physician’s medical expertise is balanced with the patient’s values.
“We're testing two ways of expanding choice for people,” Lupu said. “The first way is continuing this effort of training the nephrology teams to do a better job of communicating. In the second approach, we add that the nephrology practice creates a special team that really follows patients—basically a palliative care or supportive care team that knows how to prepare people, how to support them through a year or two and then keep them supported in the last couple of months.”
The project will utilize a randomized control trial, Lupu said, in which a randomly selected group of participating nephrology organizations will be trained to provide patients with better information. Then another group will be randomly selected to implement the new program, and comparisons will be drawn to the experience of not having the program.
“We want people to get the treatment that most aligns with their values,” Lupu said. “And that's not happening right now because we're not supporting them in discerning which treatment would match up.”
Lupu’s awareness surrounding end-of-life issues started forming after a favorite teacher of hers from high school was diagnosed with metastatic breast cancer.
“She was just absolutely determined that she was going to die at home in her own bed,” Lupu said. “And there was no hospice available in that community at that time. So, I was part of this little group of friends and some amazing nurses who created hospice for her.”
After that, one of her closest friends from high school died of melanoma when they were just out of college.
“From each of them, I learned such important things,” Lupu said. “My English teacher, who wanted to die in her own bed, was talking about it, and she was not afraid. But my friend Barbara would not let us talk about it. She wanted people in her hospital room who brought in balloons and were cheerful.”
Since then, Lupu has pursued various ways to help people face their end in a manner reflecting their own values and choices. She has learned that it’s important to bring a patient’s family members into alignment with the sometimes-conflicting views and needs of their loved ones.
“There are sometimes people who just can't be at peace letting go of the person,” Lupu said. “Part of our job is to help families work through that. And of course, it's not always going to be perfect.”
Despite the fact that perfection is elusive, Lupu keeps her personal motto in mind: “The end of the story matters.”
Thanks to the work of Lupu and her team, future stories will have a happier ending, according to Kathleen Griffith, associate dean for research in the School of Nursing.
“This PCORI award is the culmination of several successful grants led by Dale,” Griffith said, “and her talented interdisciplinary team includes faculty at multiple universities, nephrology professional organizations, and a patient advocate. Their singular goal is to advance care outcomes for patients with advanced kidney disease through empowering choice. Their collaborative work underscores GW's commitment to excellence in the creation, dissemination, and application of knowledge, and in time I expect their research will change the landscape of end-stage kidney care to meet individual and societal needs.”