As the number of infections, hospitalizations and deaths caused by COVID-19 continues to rise, researchers at The University of Toledo say advance care planning has never been more urgent — particularly in minority communities that have been disproportionately affected by the pandemic.
Advance care planning helps to ensure that an individual’s wishes for medical care are followed if they’re unable to communicate with their healthcare providers, but only about a third of American adults have done it.
“Death is a forbidden topic for a lot of people in America. By talking about it or planning for it, we think we’re going to jinx ourselves,” said Dr. Timothy Jordan, a professor of public health at The University of Toledo. “But for minorities, there are additional barriers that have prevented them from completing advance care planning.”
In 2017, Jordan and then-UToledo doctoral student Dr. Colette McAfee conducted a nationwide study that examined racial disparities in advance care planning. They found that only 8% of Black respondents and 18% of Hispanic respondents had a living will, durable power of attorney, or had talked with family members and loved ones about their wishes, in contrast to 33% of whites.
Jordan said there are a variety of challenges that contribute to that racial disparity, including poverty, lack of access to a computer, the Internet or a printer, distrust of the healthcare system, language and cultural barriers, and less awareness about the importance of advance care planning and the process by which it can be done.
While the pandemic has created a new urgency for all Americans to complete advance care planning, Jordan said it’s especially critical that public health officials, policymakers and educators work to close that racial gap.
“You don’t have time to plan a COVID-19 death. These deaths are happening quickly. The last time many people see their loved ones is when they walk into the emergency room with them,” he said. “We’ve seen clear racial disparities in who is being most affected by this virus, and those individuals are less likely to have completed advance care planning.”
Data from the U.S. Centers for Disease Control and Prevention show that Hispanic Americans are 4.6 times more likely to be hospitalized with COVID-19 and 1.1 times more likely to die from the virus than whites.
Black Americans are 4.7 times more likely to be hospitalized and 2.1 times more likely to die.
In a recent paper published in the journal Death Studies, Jordan again teamed up with McAfee, now an associate professor of public health at Westminster College in Salt Lake City, and a number of other UToledo graduates to argue that one of the keys to getting more Americans to complete advance care planning is a wholesale change of how we teach people about death.
They propose introducing death education in school-age children and continuing that as a requirement for all college undergraduates. They also say all future healthcare workers, especially nurses and clinicians, should have a more robust education on end-of-life issues.
The researchers are also pushing for a broad, public health approach to provide death education to adults in the general public. As part of that education campaign, Jordan said it’s important to have a community-based approach in which trained patient navigators can go into minority communities and guide individuals through the process of advance care planning.
“Advance care planning is free and doesn’t require working with a lawyer. Advance directive forms such as a living will and a durable power of attorney for healthcare are readily available online,” Jordan said. “It’s really an easy process, but we have to do a better job of helping people understand its importance, especially in the middle of a pandemic.”