Advance Care Planning: Considerations for Practice With Older Adults

Kathy Black

The end of life must be understood as a period that typically spans years, not just weeks or months.

Lynn, 2005

As the average life expectancy continues to increase in the United States, an unprecedented number of people are living longer (Murphy, Xu, & Kochanek, 2012). Today, many Americans will live well into their eighth, ninth, and even tenth decades of life. According to the U.S. Census, older adults aged 85, and specifically those aged 90 and older, constitute the fastest-growing age group (Werner, 2011). However, the vast majority of the nation's older population will experience declining health and functional incapacity as they age. More than 9 out of 10 older adults have at least one chronic condition, and nearly three quarters have at least two or more (Centers for Disease Control and Prevention, 2011).

TRAJECTORIES OF DECLINE AT THE END OF LIFE

The demographic aging trend coupled with the advances of U.S. medical care has shaped the end of life for most Americans (Lynn, 2005). Although the bulk of interest in EOL care appropriately focuses on the last days and weeks of those imminently dying, research suggests that the majority of Americans follow fairly typical courses or trajectories of care needs over the last months, and even years of life (Lynn, 2005). Figure 9.1 denotes the three general trajectories of decline leading to death.

The three trajectories of decline represent the EOL course for more than 9 out of 10 Americans (Lynn, 2005). In the first trajectory, people will experience long periods of good functioning, with a few weeks or months of rapid decline in which a fatal illness becomes overwhelming, leading to death. Cancer represents the most common cause of this type of trajectory,

FIGURE 9.1 Trajectories of Decline at the EOL.

SOURCE: Lynn, J., & Adamson, D. M. (2003). Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington, DC: Rand Health. with approximately 20% of Americans following this course, peaking around age 65.

The second trajectory, faced by approximately 25% of Americans, is exemplified by a slow decline in functional status, with sporadic exacerbations of two primary chronic conditions; chronic heart failure and emphysema (Lynn, 2005). After years of living with increasingly poorer health, people following this course will experience death rather suddenly and ultimately die from chronic organ system failure mostly in their eighth decade of life.

The final trajectory, representing about 40% of all people, is typified by a long-term dwindling of function, requiring years of personal care. About half of this population will have serious cognitive failure during the course of decline. Death will follow after a minor physiological challenge such as influenza, urinary tract infection, pneumonia, or a broken bone in which the body will be unable to recover. Many in this group suffer from frailty and/or dementia and will generally live into their 80s.

Combined, the latter two trajectories represent the EOL course for the majority of Americans. According to Lynn (2005), about two thirds of all Americans will succumb to one of four primary conditions: chronic heart failure, emphysema, frailty, or dementia. These EOL trajectories span a period of years, providing ample time to plan in advance.

RECONCEPTUALIZING PLANNING IN ADVANCE FOR CARE

Advance care planning (ACP) is an increasingly important issue for older Americans, their families, and their network of health care providers. Growing interest regarding ACP has been fueled by the nation's palliative and EOL care movement, which aims to better prepare people for their experiences throughout the latter years. The prominence of planning for healthrelated care in advance has been recognized by such key organizations as Institute of Medicine (Field & Cassel, 1997), National Institutes of Health (NIH, 2005), American Geriatrics Society (Lynn, 1997), and the National Consensus Project for Quality Palliative Care (2009). Philanthropic endeavors in improving EOL care include the Soros Foundation Project on Death in America (2012; soros.org) and the Robert Wood Johnson Foundation (2012) Last Acts campaign (rwjf.org). Public-based movements include Americans for Better Care for the Dying (2012; abcd-caring.org) and National Healthcare Decisions Day (2012; nhdd.org).

The concept of ACP has both traditional and evolving applications. Historically, ACP has referred primarily to advance directives (ADs), such as the living will and durable power of attorney for health care, which prepare adults for future medical decision making. In 1991, the Federal Patient Self-Determination Act mandated health care organizations and providers to address ADs with their adult patients (United States Public
Law 101–508, 1990). However, the focus on the documents has failed to address the broader elements of ACP (Gillick, 2004; Lorenz et al., 2004). Increasingly, ACP is viewed as a process and not a task (Hawkins, Ditto, Danks, & Smucker, 2005; Ludwick & Baughman, 2011), and as a social and not legal or autonomous activity (Romer & Hammes, 2004; Van Leuven, 2011). Today, there is widespread acknowledgment that ACP requires clarification of underlying values and goals to guide future health care decisions (Gessert, Forbes, & Bern-Klug, 2001), and applies to broader domains in life and health than mere medical decision making (Friedemann, Newman, Seff, & Dunlop, 2004; Zweig, Popejoy, Parker-Oliver, & Meadows, 2010).

Research suggests that older people require care in a variety of life domains, including social, financial, environmental, and health (Friedemann et al., 2004), and that future care needs can be anticipated as a result of common disease trajectories (Lynn, 2005). Yet much of the focus on planning for EOL care has centered on the needs of those imminently dying (Beckstrand, Callister, & Kirchhoff, 2006). Although there has been increasing attention on the holistic needs of dying people and their families (Heyland et al., 2006; Steinhauser et al., 2000; Teno, Casey, Welch, & Edgman-Levitan, 2001), relatively little attention has focused on the comprehensive needs of those whose EOL trajectories are extended prior to the final months of life. Therefore, ACP requires a long-range, holistic approach that addresses multiple considerations for practice.

ACP throughout the EOL is a distinct area of professional practice between people and their providers. ACP has been defined as “a means of communication and negotiation about the patient's life goals and the care that will be received in the final years of life” (Teno & Lynn, 2005,

p. 205). This view is consistent with both patientand family-centered care that addresses an individual's needs, goals, preferences, cultural traditions, family situation, and values (Feinberg, 2012). In a special Hastings Center Report on Improving Care at the End of Life, Asch (2005) suggests that ACP should help people imagine not only what physical changes may occur, but also what social, technological, and financial resources they might require to maintain themselves after the onset of serious illness and disability. Therefore, future care considerations involve attention to social supports, home and safety needs, financial concerns, and health-related issues (Friedemann et al., 2004).