Defining Advance Directives and Advance Care Planning
ADs or advance health care directives are documents that “formally convey an individual's wishes about medical decisions to be made in the event that he or she loses decision-making capacity” (Levi & Green, 2010, p. 4). They are written in advance of serious illness to state health care choices and name someone to make those choices when one can no longer speak for oneself (American Hospital Association, 2005, p. 2). These documents include living wills, a durable power of attorney for health care that names health care advocates (also known as proxies, surrogates, and agents), and the most recent innovation, POLST, which is a doctor's order specifying treatment desires for those with life-threatening conditions. The instructions in ADs can be very specific or very general. More general instructions provide directions that any and all life-prolonging care be delivered, or that such care be refused, withheld, or withdrawn. Instructions can convey an individual's wishes about pain relief, antibiotics, artificial nutrition and hydration, and the use of CPR and mechanical ventilation. ADs can include instructions for care such as Do Not Resuscitate (DNR), Do Not Intubate (DNI), and Allow Natural Death (AND).
Advance Care Planning
ACP refers to “a process that involves preparing for future medical decisions in the hypothetical event that individuals are no longer able to speak for themselves when those decisions need to be made” (Levi & Green, 2010,
p. 4). Levi and Green explained that ACP includes communication among patients, their loved ones and advocates, and clinicians about patients' values, beliefs, desires, and quality of life, along with care goals. The process of ACP often culminates in the creation of ADs.
How Did We Get Here: A Brief History of Advance Care Planning
Advance care planning documents have developed in the context of increasing longevity, advances in medical technology, and the expanding consumer rights movement (Lamers, 2005). In addition, major court cases involving EOL decision making and increasing litigation on health care matters have shaped how ADs and ACP have evolved (Meisel & Jennings, 2005; Sabatino, 2010).
The Longevity Revolution
The global population is undergoing what Butler (2008) called the “longevity revolution.” The population of older adults in the United States is expected to grow from approximately 12% to 20% by the middle of the century. From 2010 to 2050 the elder population will more than double, from a little over 40 million to more than 88 million (U.S. Census Bureau, 2012). No society in history has had such a high proportion of elders.
Upon her retirement, noted journalist Ellen Goodman (2011) called attention to the challenge facing us:
As 2011 opens, the first of the baby boomers will turn 65 at the rate of 10,000 a day for the next 19 years. We are the leading edge of what is optimistically called the Longevity Revolution. In little more than a century, Americans have gone from a life expectancy of 47 to one of 78 . . . . The decisions that we make individually and collectively about how to spend this gift of time will reshape the country.
One of the fastest-growing age cohorts is those 85 years of age or older, expected to number almost 20 million, or 20% of older adults, by 2050 (U.S. Census Bureau, 2012). These elders are naturally prone to multiple degenerative illnesses occurring over the later years of life. As the population ages and baby boomers reach later life, we can expect even higher rates of disability, especially related to obesity and the sedentary lifestyles of this age cohort (Butler, 2008). This, combined with rapidly rising rates of dementia, results in a troubling prospect for the coming generation of elders. These conditions have emerged in the United States during the last 50 years and they will become more frequent and more widespread going forward (e.g., Lamers, 2005; Lynn & Adamson, 2003; Lynn, 2004). These trends, in combination with continually advancing medical technology, mean that complex EOL care considerations are taking place among an increasing number of individuals and over an extended duration of their lives.