When was the last time you were at a party or had dinner with friends and talked about the end of your life? Have you ever talked with your partner or children about what should happen to you when you die? If your answer is “never” or “I thought about it but couldn’t follow through” you’re not alone. Just a quick glance over the web reveals that fewer than a third of Americans have articulated their end-of-life decisions in some way. Maller, Abigail. “Why Aren’t Patients Using Advance Directives?” October 23, 2013. Accessed November 9, 2014. http://www.clinicalcorrelations.org/?p=6553.This means that the loved ones and medical practitioners who care for over 70% of adults in the United States have no clear directions for how to honor the wishes of the dying. If we are so particular about the way our coffee is made, the clothes we wear, or what music we listen to, then shouldn’t we be clear about what we would like to happen to our bodies, our dependents, and our things after we die?
End-of-life decisions aren’t limited by social status or by geographic region because each of us must experience dying. This prompts questions about how end-of-life decision processes and instruments may be designed so everyone may have equal opportunities to document their wishes. For example, how can individuals who have limited access to wealth or healthcare like those who are homeless record their end-of-life decisions? How can end-of-life decision instruments be customized in order to honor the requests of individuals with specific religious and/or cultural customs?
Honoring someone’s wishes at end-of-life upholds their dignity as a human being during the last moments of their corporeal existence. This concept that all people deserve dignity is at the core of this research project into end-of-life decisions. With this in mind, the work ahead is to better understand factors that prevent adults from recording their end-of-life decisions as well as what people believe the design of an end-of-life decision should be.
What the Research is Revealing
After talking with researchers at the Scripps Gerontology Center at Miami University, I was surprised to find that even adults of advanced age still put off recording their wishes and directives for end-of-life. This suggests that regardless of age there are barriers that prevent adults from recording their end-of-life directives.Rao, Jaya K., Lynda A. Anderson, Feng-Chang Lin, and Jeffrey P. Laux. “Completion of Advance Directives Among U.S. Consumers.” American Journal of Preventive Medicine American Journal of Preventive Medicine 46, no. 1 (January 2014): 65–70. A recent study into reasons why adults in the United States do not complete advance directives has found that one barrier is lack of awareness of their importance. While a lack of information about advance directives may be a significant barrier preventing adults from recording their end-of-life wishes, emotional challenges may also be a significant barrier.Valente, Sharon. “Fact Sheet on End-of-life Care.” 2014. Accessed November 9, 2014. http://www.apa.org/pi/aids/programs/eol/end-of-life-factsheet.aspx. A brief factsheet provided by the American Psychological Association notes how fear, cultural background, socioeconomic status, and religion can all be factors that can hinder end-of-life decisions from being made.
After just a half-hour of research, several factors that prevent end-of life decisions from being recorded have already become clear. An immersive literature review is currently underway to more clearly define factors that prevent adults from recording their end-of-life wishes.
Based on the work of a few researchers, it seems as if there are rich opportunities ahead for more clearly understanding the problem and for designing interventions that may help improve the rate of adults recording their end-of-life directives. So far, findings are piling up that most Americans are not recording these decisions and that real and perceived factors are at play. For this reason, an interdisciplinary team of researchers from design, the social sciences, and medicine is needed.
Just because something like death is uncomfortable to talk about is not a reason to ignore it. What we stand to gain from this work is clarity and dignity: so loved ones and medical practitioners know how to honor the wishes of the dying and so their lives are honored during the process. I’m looking forward to the adventure ahead—the people we stand to help are worth it.