Increasing the Number of Advance Directives in the United States

Public Health Commentaries by Students is the result of a classroom writing assignment by Dr. Erika Martin at the University at Albany-SUNY who required students to write a 1,000 to 1,200 word commentary on a health-related topic of interest, explaining some of the complexities of solving the problem and offering recommendations. Four commentaries have been selected for publication on JPHMP Direct. Other public health educators may find Dr. Martin’s process helpful in developing their own course materials. Learn more: “Designing University Writing Assignments to Foster Interest in Public Health Issues and Build Professional Skills.”

At some point, everyone will face an end-of-life care situation, whether it involves their own care, a partner’s, a family member’s, or someone else in their life. This time is naturally very emotional for those involved, and the added stress of making decisions regarding that person’s care can be a heavy burden. Despite this, the amount of people in the United States with advance directives (eg, a living will), is shockingly low at an estimated 18 to 36% due to cultural differences, misconceptions, and/or lack of knowledge. Nevertheless, there are steps that can be taken to educate the public about and promote the completion of advance directives.

Though there are factors that prevent people from completing an advance directive, there are many benefits patients can reap by having one. The Patient Self-Determination Act, implemented in 1991, provides legal protection for a patient’s decisions and outlines the steps health care agencies must take to realize these decisions. It also prevents health care providers and/or family members from making treatment decisions that go against what the patient wants. Furthermore, advance directives allow patients to personalize their end-of-life care regardless if they can make decisions at the time care is necessary and may reduce health care costs by avoiding expensive treatments if so desired by the patient.

Various studies have pinpointed certain demographics that are less likely to complete an advance directive and why. Rao, et al found that of the participants in their study, 83% of Black, 83.3% of Hispanic, and 74.7% of all respondents did not have advance directives as compared to 69.4% of White participants. The differences in these percentages can be attributed to cultural beliefs. For example, traditional Hispanics tend to believe in putting their fates, and those of their families, in the hands of their physicians since they have more knowledge and experience. Furthermore, many Blacks distrust the health care system out of fear of prejudice and even genocide, so they are less likely to pursue treatment, let alone plan treatment for the end of their life. Rao, et al also found that there was a higher percentage of participants who did not complete high school without advance directives compared to those with more education. In addition, females are more likely to have advance directives than males, and Ashcraft and Owen found that residents of rural areas are less likely to complete them as well, due to reduced access to both health care professionals and lawyers.

Figure created with Canva, adapted from Rao, Anderson, Lin, and Laux, “Completion of Advance Directives Among U.S. Consumers,” 2014.

Rao, et al reported that the two most common reasons for lack of advance directives were that participants did not know what advance directives are or felt that they did not need them because their families were aware of their wishes. Newman Giger, Davidhizar, and Fordham referenced similar findings in a 1998 study, adding lack of knowledge about end-of-life care and mixed feelings about their end-of-life goals as additional influences against advance directives.

Thus, the positive impacts advance directives have on families bolster the benefits above. As stated by Novelli and Banerjee in their article, the data is important, but the people affected are the largest motivation. Creating advance directives could reduce stress on family members faced with the task of trying to guess what the patient would want in end-of-life situations, as the decisions would be made clear in the documents. As Greenberg, Weiner, and Greenberg state, “We cannot understate the anguish felt by family members who argue with other members about treatment and financial matters, sometimes to the point of lawsuits and family disintegrations.” 

How do we increase the number of people with completed advance directives in the United States so that patients and their families can reap the protection and advantages offered by them? Duke, Thompson, and Hastie state that conversations about advance directives are started by patients. But the same study found that 23% of patients heard of advance directives for the first time from their doctor or another health care provider. Patients are not able to begin discussions with their providers if they are not made aware that advance directives exist.

Therefore, increasing the doctor-patient communication about advance directives would increase the number of patients who complete them, especially if that communication is cultivated in a culturally competent manner. Patients are more likely to complete an advance directive if they are asked to do so by their health care provider. Thus, if physicians and other health care providers would make it standard practice to discuss advance directives from early adulthood, especially with patients representing minorities in the United States, the prevalence of patients who completed advance directives would increase. Galambos, et al suggest that conversations about advance directives should be initiated before a patient experiences a change in health, as he or she will be able to make decisions based more on careful thought rather than fear. If health care providers introduced the considerations of advance directives while patients are still considered “young,” ideally they would have this time to reflect on what they want their decisions to be. Also, Novelli and Banerjee suggest that advance directives should be revised and renewed every five years and/or whenever health changes would allow patients to rethink their decisions and change any decision they would like to. This would allow advance directives to be more flexible and change with times and technology as well as the desires of patients, making them more appealing to both patients and health care providers.

Though improving statistics and altering the routine and culture of medicine may seem like a daunting task, it is possible. Through increasing education of advance directives for patients, especially minorities, and starting discussions regarding end-of-life care in early adulthood, the prevalence of advance directives in the United States will begin to increase.

Related reading in the Journal of Public Health Management and Practice:*

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Alexa Brooks
Alexa Brooks is a sophomore in the Honors College at the University at Albany, majoring in human biology with a minor in Spanish. She is studying to become a licensed Physician Assistant specializing in Orthopedic Surgery.