Study aims to narrow gap in end-of-life care for minorities

Dr. Ramona Rhodes

UT Southwestern has been selected as one of the sites in a five-year, multicenter study that aims to reduce disparities in the quality of end-of-life care often experienced by elderly African-Americans.

Dr. Ramona Rhodes, Associate Professor of Internal Medicine, serves as Principal Investigator of the local component in the $5.82 million Duke University-based investigation supported by the Patient-Centered Outcomes Research Institute (PCORI). The study – which also includes Emory University, the University of Alabama at Birmingham, and the University of South Carolina – will work to identify and reduce some of the factors associated with racial differences in advance care planning (ACP) among older adults, and to determine if a structured approach or a patient-guided, self-management approach is more effective at increasing advance care planning.

“We’re very excited about this project, particularly because interventions that address the disparities in advance care planning are few in number,” said Dr. Rhodes, a UT Southwestern faculty member in the Division of Geriatric Medicine since 2009. 

Dr. Ethan Halm, Director of UT Southwestern’s Center for Patient-Centered Outcomes Research, said: “It is critically important that clinicians caring for patients with serious illness understand their values and preferences so patients get all the appropriate care they want, but also avoid the end-of-life care scenarios they fear. This study will attempt to improve this situation and reduce disparities in this important area.” 

Research has shown that elderly African-Americans who are seriously ill are less likely to enroll in hospice, more likely to experience poor communication with providers, and more likely to receive poor-quality, high-cost end-of-life care – including avoidable hospitalizations and stays in intensive care units – compared with the general population. It has not yet been determined if these differences relate to cultural beliefs and preferences of patients or inequitable access to advance care planning, which African-Americans are also less likely to participate in.

“The reasons for these differences are multifactorial; however, there seems to be a common thread within the literature,” said Dr. Rhodes, who studies racial and ethnic disparities in older adults, long-term care, and end-of-life care. “Medical mistrust, lack of knowledge about options for advance care planning, and fear are just a few reasons that have been cited. We have found that some patients believe that if they sign a document expressing their preferences not to be resuscitated, that they will not receive any care at all – including antibiotics or IV fluids if needed.”

The EQUAL ACP study, which will enroll several hundred senior participants, will test the effectiveness of two ACP models: formal, which is defined as completion of a structured document outlining the patient’s wishes; or informal, which may include discussion with clinicians, family members, or other surrogate decision-makers. Study participants will include those at high risk of mortality, functional decline, or hospitalization and those with metastatic cancer and advanced chronic illness. Dr. Kimberly Johnson, Associate Professor of Medicine (Geriatrics) at Duke, is leading the national network.

At UT Southwestern, study participants will be recruited through the William T. and Gay F. Solomon Division of General Internal Medicine and at the Mildred Wyatt and Ivor P. Wold Center for Geriatric Care.

Dr. Rhodes also serves as site Principal Investigator in a related five-year, $10.9 million PCORI-funded study with researchers from Massachusetts General Hospital comparing the quality of early integrated palliative care delivered via telemedicine versus in person to advanced lung cancer patients. 

“I hope this research will help to break down some of the misconceptions associated with ACP, palliative care, and hospice,” Dr. Rhodes said. “In doing so, I hope that patients and families from diverse backgrounds will be able to make informed decisions about their care at a very challenging time in their lives.”                

Dr. Halm, also Chief of the William T. and Gay F. Solomon Division of General Internal Medicine and a member of the Harold C. Simmons Comprehensive Cancer Center, holds the Walter Family Distinguished Chair in Internal Medicine in Honor of Albert D. Roberts, M.D.