By Sheri L. Stuart, a 2015 Journalists in Aging Fellows Program Alumni
(UPLAND, CA) – In an eight-hour shift, Alicia Lamour will evaluate the nursing care of a number of patients admitted to Citrus Valley Hospital. They range from young to old. Some are relatively healthy. Others are critical. The busy surgical care nurse reviewer knows regardless of age, race or ethnicity, not every patient is prepared for the unexpected.
“I cannot stress enough how important it is for people to be aware of the options they have if they become too sick to make decisions for themselves,” says Lamour who provided direct patient care for 12 years before transitioning to the administrative side of California’s health care system.
Planning for life’s “what ifs” is shown to ease unnecessary suffering, improve quality of life, and provide better understanding of the decision-making challenges facing the individual and his or her caregivers. In California, patients have the option of placing an advance care health directive form in their medical file. This is a legal document that lets patients have a say about how they want to be treated if they get very sick.
“As a health care professional, I’ve educated many patients on this form and walked some through the process on various hospital admissions. This form will help guide health care professionals and loved ones on how to follow their wishes on life support treatments and end of life decisions,” added Lamour.
For African Americans, Advance Care Planning (ACP) has significant public health impact yet is met by multiple barriers. Chao-Hui Sylvia Huang, PhD, a researcher from the University of Alabama at Birmingham presented such findings in November at the annual meeting of the Gerontological Society of America. In the Thinking Ahead Project: A Pilot Intervention Study to Increase Acceptability of Advance Care Planning among African American Middle-Aged and Older Adults, Dr. Huang revealed three barriers to ACP, including lack of informed education, mistrust of doctors, and avoidance to discuss death. In addition, Dr. Huang found that African Americans are less likely than non-Hispanic whites to engage in ACP due to the identified barriers. Data was gathered through a mixed-method of research that included surveys and face-to-face meetings with African Americans residing in the Deep South where racial disparities and health outcomes are most pronounced.
“Advance care planning is an important health decision that almost every adult needs to think about when they are healthy and still have decision-making capacity,” said Dr. Huang. “Research over the years though has shown a very clear pattern of disparities among African Americans.”
Also known as a living will, ACP is governed on a state-by-state basis. Californians can request assistance from a number of agencies providing education and guidance on the ACP process. The Coalition for Compassionate Care of California is one such organization that coordinates local coalitions across the state to make conversations about advance care planning and end of life a normal part of everyday life.
“I know I must do something, but my children have been hesitant to sit down and discuss end of life issues with me,” says Rena Neal, a 59-year-old of mother of four living in Southern California. “In the meantime, I’m working on getting this done through a legal service.”
This article was written with support from a journalism fellowship awarded by New America Media and the Gerontological Society of America, sponsored by the Archstone Foundation.