New Research Highlights Ways to Enhance End-of-Life Care

For Immediate Release:
June 27, 2016
Lauren Adams

Studies using VA data focus on variations by condition, race and ethnicity and identify key drivers of family dissatisfaction

Boston (06/26/16) – Research presented today at AcademyHealth’s Annual Research Meeting highlights opportunities to enhance end-of-life (EOL) care through identifying variations by condition as well as by race and ethnicity and identifying key drivers of family dissatisfaction. Drawing on data collected by the Reporting and Outcomes Measurement to Improve the Standard of care at End-of-life, or PROMISE Center (recently renamed The Veteran Experience Center), a national quality improvement program at the Veterans Health Administration, these studies provide new information critical to assessing quality. The major outcome examined in all three studies is the Bereaved Family Survey, a National Quality Forum endorsed measure which is administered to family members of virtually all patients dying in a VA acute or long-term care facility

In a study published today in JAMA Internal Medicine comparing EOL care by different life-limiting conditions, researchers found that family-reported quality was significantly better for patients with dementia and cancer than for patients with conditions such as lung, kidney or heart failure.

“While most of the work evaluating end-of-life care has focused on cancer patients, we know that most patients die from things other than cancer, so it’s important that we’re able to provide quality care for patients with a variety of life-limiting conditions,” said Melissa Wachterman, M.D., the study’s lead researcher and assistant professor of medicine at VA Boston Healthcare System and Brigham and Women’s Hospital.

This study also includes data from new sources tracking the family perspective, Dr. Wachterman noted, which is a critical component of quality as families’ evaluation of care are often consistent with patients’. The study found that access to palliative care and discussions about treatment preferences at the end of life were the factors most likely to enhance family satisfaction, pointing to opportunities for improvement by focusing on these specific areas, particularly for patients with lung, kidney, or heart failure.

Study finds equal delivery of EOL services to minorities, but disparities in perceptions of quality

When it comes to comparisons between EOL care in minority and non-minority populations, researchers at the Department of Veterans Affairs PROMISE Center found that, on the whole, all veterans regardless of race or ethnicity are equally likely to receive care associated with higher quality at the end of life. Despite that, researchers found a marked disparity in perceptions of that care between minority and non-minority bereaved families.

“Our findings show that although medical records may be similar between patients, the perception of quality may not be,” said lead study author Ann Kutney-Lee, Ph.D., who is a research scientist at the VA PROMISE Center and assistant professor of nursing at the University of Pennsylvania. “This highlights the need for increased efforts in truly patient-centered care that is culturally competent and considers the patient’s and family’s unique needs and preferences.”

This is the largest study of its kind and the first in the VA to include a family perspective. Data included more than 94,000 chart reviews as well as results from the Bereaved Family Survey representing more than 51,000 family member responses. Dr. Kutney-Lee said follow-up studies are being planned to help better understand the drivers of the differences found in family perceptions.

Big data methods help identify key factors driving family dissatisfaction

The vast amount of data gathered from both chart reviews and the family survey allowed researchers to use an innovative big data analysis method called machine-learning to identify the most important drivers of family satisfaction.

Using this method, the study identified three care factors that drove family satisfaction including: staff taking time to listen, post-death emotional support, and spiritual support. The study also found that the patient’s age, setting of death and particular Veterans Integrated Service Network were also key factors in family satisfaction.

“Using machine-learning we were able to find that if a facility were to prioritize intervention efforts to address only one risk factor, improving the communication between staff and patients and families is by far the best bang for the buck,” said Joshua Thorpe, Ph.D., the study’s lead author and associate director of analytics and research at the VA PROMISE Center. “The proportion dissatisfied with care was 12 times higher in family members who perceived the staff failed to take time to listen.”

Data from “Race/Ethnicity and End-of-Life Care Among Veterans,” “Quality of End-of-Life Care Provided to Patients with Different Life-Limiting Conditions on Tuesday” and “Using Machine-Learning Methods to Identify Key Drivers of Family Dissatisfaction with VA End-of-Life Care” will be presented in a session entitled “Enhancing End-of-Life Care Outcomes and Guiding Policy: The Department of Veterans Affairs Experience” on June 26, at 2:00 p.m. ET, in room 203 of the Boston Hynes Convention Center. For more information about featured studies, please visit


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