U. of Tennessee Professor Leads Study on Pediatric End-of-Life Care

Pediatric End of Life

Can collaborative care ease an unbearable situation?

For the past 12 years, Lisa C. Lindley has devoted her career to a subject most people can’t even bring themselves to ponder.

Dr. Lindley, PhD, RN, FPCN, is an associate professor in the College of Nursing at the University of Tennessee, Knoxville. As a hospice nurse by training, she deals with the harsh reality of end-of-life considerations daily. But when the patient in question is a child, such a topic takes on increased sensitivity.

“It’s a population that really interests me,” said Dr. Lindley. “I’ve always wanted to understand the type of care children can access.”

Now, Dr. Lindley is leading a study that will examine data from over 20,000 patients, all with the goal of answering a question we all wish never needed to be asked.

“Can kids come home to die?” she asked, “or do they need to stay in the hospital?”

Collaborative Care

Dr. Lindley’s earlier studies have concerned topics such as what types of palliative care are available to children, and who provides that care?

The focus changed when President Obama signed the Patient Protection and Affordable Care Act in 2010, which among other things allowed families to receive hospice care for children while continually receiving treatments for the illness in question. “That’s a huge change in eligibility requirements for hospice care,” Dr. Lindley explained. “Parents don’t have to make this terrible choice anymore between enrolling a child in hospice, or staying in the hospital to continue treatment.”

Thanks to the Patient Protection and Affordable Care Act, the children can receive both methods of care simultaneously, hence the term “concurrent care.” The eligibility criteria still include the ‘six months or less to live’ stipulation, but Dr. Lindley couldn’t overstate the significance of removing that initial barrier.

“That’s what our study looks at,” she said. “How does the ability to provide both methods of care compare to standard hospice care for children? Are there better outcomes, are there reduced costs? Is it less burdensome?

“In summary, what happens when you give families that choice?”

Thanks in part to a $1.5 million grant from the National Institute of Nursing Research—part of the National Institutes of Health—Dr. Lindley’s study will run until May 2022.

While many studies accumulate data via interviews with children and families, Dr. Lindley’s study will rely upon claims data direct from Medicaid. “It’s a very common insurance plan for kids,” she explained.

The data will pertain to children under the age of 21 from all 50 states who passed away between 2011 and 2013. The time period is interesting, because it reflects the immediate impact of concurrent care, which was legislated in 2010.

As we all learned in middle school, no good study begins without a hypothesis, and Dr. Lindley and her team have a few. “We anticipate that concurrent care will improve continuity of care,” she said. “They won’t have to stop their treatment, or end their existing relationships with clinicians in order to begin hospice care.”

Improved symptom management is another area of focus. “Now you have multiple sets of clinicians watching these children,” she explained. The issue of constipation is of particular interest, as it tends to be a common problem for children at the end of life. “We think this is something that will improve,” summarized Dr. Lindley.

Right now, the data is on its way to the researchers as they prepare to begin the study. “With secondary data, there’s a lot of ‘cleaning,’ prepping of the data that has to take place,” explained Dr. Lindley. “We would anticipate some preliminary findings in the next 12 months.”


Of course, no one could take on such a large-scale topic alone, and Dr. Lindley’s has an extensive team of researchers, co-investigators, and a project manager. The project manager is Theresa Profant, while two students at the University of Tennessee, Knoxville will serve as research assistants.

Four partners will serve as co-investigators on the study:

  • Dr. Pam Hinds, Children’s National Health System, Washington, D.C.
  • Dr. Jennifer Mack, Dana Farber Cancer Institute, Boston, MA
  • Dr. Melanie Cozad, University of South Carolina, Columbia, SC
  • Dr. Jessica Keim-Malpass, University of Virginia, Charlottesville, VA

“They’re conceptualizing the data, analyzing and interpreting the data, and finally, disseminating our findings,” explained Dr. Lindley. The investigators have been involved since the beginning, and almost all research is performed remotely. The team meets by video conferencing, while Dr. Lindley meets with her team at UT every two weeks. “Our College of Nursing has a long history of online education,” she said. “We’re forward thinking in the areas of video conferencing, electronic media—this gives us an opportunity to extend that availability into the research environment.”

As part of their grant from the National Institute of Nursing Research, presentations at national and academic conferences will occur once the data is accumulated and analyzed.

A small but emerging cohort of researchers are devoted to finding more data on this sensitive yet critical topic. “It’s certainly not brand-new,” said Dr. Lindley, “but at the same time, we have many new clinicians and nurses who are starting to delve into this area of research. More people are becoming interested in this topic and creating their own studies.”

Over the next couple of years, Dr. Lindley expects to see continued growth of studies and investigations aimed towards helping healthcare professionals better understand end-of-life treatment in pediatrics. It’s a topic and situation no one wants to think about and certainly no one should have to withstand—but when it does happen, this information will be invaluable to parents, families, and children and the precious time they have together.

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