A national study by University of Toledo researchers shows 75 percent of adults in the U.S. have not completed end-of-life planning.
Only 18 percent of Hispanic and 8 percent of African-American respondents had a living will, durable power of attorney, or talked with family members and loved ones about their wishes, in contrast to 33 percent of whites.
The UT research study titled “Predicting Racial and Ethnic Disparities in Advance Care Planning Using the Integrated Behavioral Model,” which also investigates reasons behind the racial and ethnic gap, was recently published in OMEGA: The Journal of Death and Dying.
“We don’t like to talk about our mortality,” Dr. Timothy Jordan, professor in UT’s School of Population Health in the College of Health and Human Services, said. “But the minute we’re born, we begin the dying process.”
Jordan cites the case of Terri Schiavo, a 26-year-old Florida woman whose death more than 12 years ago still resonates.
After suffering cardiac arrest in 1990, Schiavo was the focus of a contentious, seven-year fight that pitted her parents — and many right-to-life advocates — against her husband, Michael, who vowed to remove her from artificial life support based on her previously spoken wishes.
Jordan said the lack of hard copy documentation of Terri Schiavo’s wishes propelled her case into a slew of legal machinations that twisted through the Florida governor’s office, to the U.S. Senate floor and, ultimately, to the U.S. Supreme Court.
Without clear documentation of one’s end-of-life wishes, Jordan said, the battle that fueled the “what would Terri want” argument could erupt any time, with anyone at its epicenter.
“We live in a society that’s death-denying,” Jordan said, noting that current funeral practices beautify corpses with makeup and hair-styling, and use carpets of artificial grass to hide the freshly dug gravesite holding the deceased’s casket. “We don’t like to talk about death because it reminds us that we’re mortal.”
Several studies, he said, have established that racial/ethnic minority adults are less likely than whites to complete advance care planning, also called end-of-life planning.
“The question is why,” Jordan said. “[Current research] has just reported that gap. No one has really explained why it occurs.”
Jordan and then-UT doctoral student Dr. Colette McAfee, now an assistant professor at Westminster College in Salt Lake City, designed a study to investigate why African Americans and Hispanics were less likely to have three of the following advance care components completed:
• Living will;
• Durable power of attorney for health-care decisions; and
• Verbal discussion with family members and loved ones.
The three-component approach is significant. Most studies, Jordan said, consider advance care planning complete if one or two of the elements have been finalized.
The study sampled a random cross-section of 386 American adults between 40 and 80 years of age; 51 percent was female, with 49 percent male. The racial/ethnic makeup and geographical locations of respondents, Jordan noted, were nearly identical to the U.S. population.
Three in four respondents had not completed advance care planning as defined by the study.
“Hispanics were two times more likely than blacks and eight times more likely than whites to say they’d never even heard of end-of-life planning,” Jordan said. “That really shocked us.”
Even more noteworthy was the finding that just 30 percent of respondents’ advance care planning intentions was explained by the Integrative Behavioral Model — a well-accepted standard that helps researchers explain and predict behaviors.
“One of the key take-home points is that 70 percent of the decision to do complete end-of-life planning in the future was outside of our behavior model,” Jordan said. “We could only explain 30 percent of respondents’ behavioral intention, so what other factors were at work?”
He cites several speculations, including lack of awareness, computer access, knowledge of end-of-life documentation and accessibility, as well as language barriers. He and McAfee may address these issues in future studies.
When McAfee presented the research at the American Public Health Association annual meeting last fall, many researchers from across the country were interested in expanding it.
“Dr. Jordan and I are already working on a follow-up study with similar parameters, but in a younger population,” McAfee said, noting the target age range for respondents will be between 20 and 40. “We know that the younger the population, the less likely they are to give attention to advance care planning.”
Since Hispanics were the least likely to have a basic awareness of advance care planning, McAfee also intends to further explore cultural subsets, including Hispanics of Puerto Rican, Mexican and Cuban descent. Additional research may focus on Americans of Pacific-Islander and Asian origin.
McAfee taught courses on death and dying at UT and has initiated a similar class at Westminster College, where she works mostly with public health students. She and Jordan find it remarkable that a formal end-of-life curriculum is not required for all students in nursing, pre-medical and other clinical fields, considering most of these students will deal with patients’ life-threatening illnesses and death frequently during their careers.
“I think it’s extremely important,” McAfee said of exposing student populations, even those in high schools, to education regarding death and dying. “It’s a prime opportunity to bring up end-of-life issues. If you’re an oncologist or a health-care practitioner who deals with critical illnesses, you need to be able to communicate these issues with your patients or they won’t get the appropriate care.”
She and Jordan believe the general population is open to end-of-life discussions, but reticent to initiate them.
“Once you bring it up, most people are willing to discuss it,” McAfee said. “Primary care and family physicians, in particular, would provide a perfect atmosphere to intervene because they have longstanding relationships with their patients.”
If those conversations don’t take place, Jordan said people become aware of end-of-life issues when a close friend or family member becomes progressively ill or has a catastrophic situation.
“The only time you really think about it is when we have a big, national case that goes to the Supreme Court, like the Terri Schiavo case,” Jordan added. “But it’s something we need to think about and bring into the classroom, because how much more relevant can a class be?”