Detecting and Mending Disparities with End-of-Life Care

Tuesday, October 10, 2017

In 2016, the Duke School of Medicine selected 38 of its faculty for the new Duke Health Scholars and Duke Health Fellows Program. With funds from the Duke University Health System, the program supports the research efforts of early to mid-career clinician-scientists at Duke.

Among the faculty honored are 14 individuals from the Department of Medicine, including Kimberly Johnson, MD, MHS, associate professor of medicine (Geriatrics).


It is no small matter that terminally ill African-Americans patients enroll in hospice less often than white patients. Lower participation contributes to health disparities between the races.

African-American patients are less likely than white patients to have their pain adequately diagnosed and treated, for one. They less often obtain medicine to treat pain and are less satisfied with communication and overall care from health providers.

When geriatrician Kimberly Johnson first observed these differences as a resident in the 1990s, she understood immediately that physicians needed to address them. So she did.

“Hospice brings better pain management and more satisfying communication with providers. If we can increase hospice use, we can decrease some disparities,” said Johnson, whose research has decoded cultural and organizational barriers to African Americans receiving palliative care at the end of life.

A commitment to decreasing race-based disparities has been a goal for Johnson since she was a child in a predominantly African-American community called Winstonville in rural western Mississippi. “Growing up in a small town in in the deep, deep South, awareness of race and racial injustice were pretty widespread,” Johnson said.

Shadowing a physician at the federally funded Delta Community Health Center near her hometown inspired Johnson to become a doctor. The plan: graduate from Dillard University in New Orleans, dive into medical school at Johns Hopkins University, complete a residency, and return to the health center to treat patients.

In medical school Johnson was drawn to her eldest patients, to their stories and medicine’s ability to help them regain function. At Duke for her internal medicine residency, geriatrics fellowship, and year as chief medical resident for ambulatory services 2000-2001, fellow residents told her of distinctive traits among their African-American patients.

“People would mention there was something very different about their interactions with African-American patients and their families, how their religious beliefs might affect their decision making at the end of life,” Johnson recalled.

Probing for Problems and Best Practices

To obtain more clarity, Johnson during her geriatrics fellowship dug into the limited literature on racial differences in end-of-life medical care and interviewed African-American patients and family members. Both efforts confirmed the influence of religious beliefs, particularly a certainty that only God could decide when it was time for a person to die.

During a grand rounds presentation, Johnson played a video of her interview with a minister who for seven years had lovingly cared for his wife who was uncommunicative and dependent on a feeding tube after a damaging stroke. “He found meaning in caring for her. He saw it as God had answered their prayers by keeping his wife alive,” Johnson said.

Mistrust in the healthcare system among African-American patients was in play too, including a belief they might be steered to inferior care if they declined treatments, Johnson documented. That mistrust was fueled by more than a long legacy of racial discrimination, including the appalling mistreatment of black men in the notorious Tuskegee syphilis study.

“There are studies that show that African-Americans receive lower quality care than whites. People are quite aware of that,” Johnson said.

Duke geriatrician Harvey J. Cohen, MD, today director of Duke’s Center for Aging & Human Development, urged her to consult with James Tulsky, MD, then a palliative care doctor and researcher on faculty. Tulsky pointed Johnson to a database of patient information produced b by a large hospice provider  that Duke had a data sharing agreement with.

Before she knew it, Johnson was a junior faculty member launching an influential research career as one of the first people to explore differences in hospice use by race.

“Dr. Johnson has defined a unique and important niche in palliative care, and received national recognition for her work. She has taken a uniquely patient-centered approach, long before this was the current vogue,” said  Laura Svetkey, MD, MHS, vice chair for faculty development and diversity.

Over the years, Johnson uncovered additional barriers to Afrcian Americans enrolling in hospice care, including little knowledge about hospice, limited access to referrals outside of the hospital, religious beliefs and preferences for more life-prolonging treatments.

With studies of hospices in North Carolina and South Carolina, she and collaborators have pointed to better practices by demonstrating that African Americans are more likely to enroll in hospice when providers perform education and outreach at churches and civic groups. Participation also rises when patients are permitted to receive therapies such as chemotherapy and blood transfusions.

Johnson has expanded her research to better understand ways to encourage African-Americans to enroll in the wide range of palliative care emerging in this country. She has plans for national observational studies and intervention trials to try to help develop best practices to reduce disparities in an expanding field of medicine.

“We need to be thinking about these issues from the very beginning,” Johnson said.

The series of profiles of our Duke Health Scholars were written by Catherine Clabby, freelance science journalist. Photos are by Ted Richardson.

Editor's Note

Dr. Johnson received funding from the National Institute on Minority Health and Health Disparities (NIMHD) this fall to establish the Duke Center for REsearch to AdvanCe Healthcare Equity (REACH), one of 12 NIH awards to fund a specialized research center designed to conduct multidisciplinary research, research training and community engagement activities focused on improving minority health and reducing health disparities. The 12 centers will share approximately $82 million over five years, pending the availability of funds. Learn more.