Oct. 28, 2015
Personal experience drives doctoral candidate to study end-of-life care discussions
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The U.S. Department of Health and Human Services recently awarded a $100,000 grant for a Virginia Commonwealth University School of Medicine graduate student to examine palliative care discussions between nephrologists and their patients who have end-stage renal disease.
Jennifer St. Clair Russell, a doctoral candidate in the Department of Health Behavior and Policy, is principal investigator for the two-year HHS Agency for Healthcare Research and Quality Small Research Grant.
End-stage renal disease occurs when the kidneys stop working well enough for a patient to live without dialysis or a transplant. Nearly 26 million Americans have some stage of kidney disease and it is cited as the ninth-leading cause of death in the U.S., according to the National Kidney Foundation.
The majority of patients diagnosed with end-stage renal disease are placed on dialysis, but the treatment can be extremely hard on the body and can result in symptoms such as nausea and pain, leading to a significant reduction in quality of life. Many patients would benefit from discussing palliative care options as an alternative to dialysis treatment with their health care providers, but the literature suggests that those conversations are either not occurring or are occurring too late, often when patients are unable to speak for themselves.
“The study will look at whether patients are being given information in a way they can understand and, if not, how we can help providers improve that,” St. Clair Russell said.
Sometimes doctors seem to speak a different language. How can we bridge that gap so that patients can understand what they are being told?
The 41-year-old full-time graduate student also works full time as a special projects director at the Mid-Atlantic Renal Coalition, which is based in Chesterfield. A few years ago her mother was hospitalized for more than 120 days due to complications from back surgery.
“When that happened, it made the decision to return to school for me because it showed me the importance of having a patient advocate in the exam room who can understand what is going on,” St. Clair Russell said. “In many ways, I felt like I was my mother’s walking medical record. Often the professionals wouldn’t take the moment to look at her charts; they would just come in and start talking to me. That pushed me in this direction to try to help.”
In May, St. Clair Russell’s 46-year-old husband was diagnosed with a rare form of stage 4 bladder cancer. He is currently undergoing chemotherapy at Duke University. “During his treatment I was thinking about how important it is to understand what is going on with your health,” St. Clair Russell said. “Sometimes doctors seem to speak a different language. How can we bridge that gap so that patients can understand what they are being told?”
The study will start with 12 interviews with nephrologists and nephrology fellows across the country. The second phase of the study will consist of focus groups in which nephrologists and nephrology fellows will be asked to identify and rank barriers and facilitators to discussions about withdrawing from or withholding dialysis treatment and initiating palliative care. Long term, the results will be used to develop skill-based training and curricula on end-of-life discussion techniques tailored to the needs of nephrologists and nephrology fellows.
“My professional experience as well as my personal experience drives me to want to help patients and providers communicate better,” St. Clair Russell said. “I think both parties will benefit from it.”
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