Lack of Awareness About Advance Directives and Advance Care Planning
Among members of the general public and, even more alarmingly, among clinicians, there is a lack of awareness of how the ACP process can best be conceived, documented, and used (e.g., Fagerlin & Schneider, 2004; Levi & Green, 2010; Sabatino, 2010). Even when ADs have been completed, they may not be available at the time of a health care crisis. Physicians may not know their patients have completed ADs. One study showed that 66% of
people who had completed ADs had not discussed their treatment wishes with their physician (Porensky & Carpenter, 2008).
Difficulties in Deciding on Specific Treatments
Critics of living wills have argued that it is difficult for people to choose their preferences for specific medical treatments or procedures they would or wouldn't want at some unknown time in the future. Medical jargon is intimidating and off-putting, and according to Tonelli (1996), it is difficult for patients to evaluate the risks or benefits of various options at some time in the future. Standard living wills tend to state treatment options as cutand-dried choices with little attention to the real-life complexities involved in what may be the reality of the future situation the patient is likely to encounter (Winter, Parks, & Diamond, 2010). Further, Tonelli argued, the patient will still be reliant on the judgment of the physician, who will determine whether the patient is competent to make decisions.
Inability of Surrogates to Predict Patient Preferences
The SUPPORT Intervention (Teno et al., 1997) and other studies have shown that surrogates or proxies, those who have been given the responsibility to make decisions for another, are often not able to accurately report the patient's preferences. According to Covinsky, Fuller, and Yaffe (2000), the SUPPORT study showed that many surrogates could not accurately report whether the patient valued comfort or maximum life expectancy; surrogates were inaccurate in predicting whether the patient wanted to receive resuscitation or live permanently in a nursing home. Emanuel (1995) found spouses (and physicians) had a “surprising inability” (p. 36) to accurately predict a patient's prior wishes. She found that patients frequently did not discuss their wishes with their proxies, with only 16% to 55% of patients having talked with their proxy about their EOL concerns. Tonelli (1996) stated that “the poor concordance between patients and their surrogates makes proxy decisions based on the presumed wishes of the patient the practical and moral equivalent of an educated guess or, at worst, the flip of a coin” (pp. 818–819).
Lack of Health Care Provider Skills in Communication
As Parker et al. (2007) observed, clinicians are frequently not trained to facilitate communication with patients and their loved ones about ADs, ACP, EOL care, and death. This lack of training is due, in part, to reliance on previous models used by clinicians to conceptualize the patient–clinician relationship based on paternalism and autonomy (see, e.g., Schermer, 2003; Smith & Newton, 1984). Tulsky, Fischer, Rose, and Arnold (1998) found physicians used vague language in talking with patients about ADs and rarely explored “patients' values and attitudes toward uncertainty” (p. 441; also see Prommer, 2010).
Focus on Autonomy and Control
ADs arose as a way for individuals to exert control over their own dying process, even after they could no longer speak for themselves. According to Holstein, Parks, and Waymack (2011), this has led to an “individualistic, treatment-specific, and decontextualized approach to the dying process that somehow erases the vulnerable, hurting self in favor of the rational, cognitive self” (p. 234). The focus on autonomy and control and the legalistic approach to documenting individual preferences—as one would pass on his or her estate—led to the devaluation of other principles central to life and death, such as community, relationship, and interdependence (Holstein et al., 2011). In addition, cross-cultural studies of EOL decision-making processes show that some people do not want to talk about death and dying or have control over care decisions at EOL, and would rather trust medical professionals and/or relatives to make their own decisions on their behalf. Grudzen et al. (2011), for example, found that few Latino patients had talked with their physicians about their preferences and most derived comfort from their belief in God, who they believed controlled their fate. Language or literacy barriers also create barriers for members of racial or ethnic minorities (Wilkinson, 2011).
The Ideology of Rescue
As Chapple (2010) has pointed out, there is a prominent ideology of rescue in the U.S. health care system. The virtually unquestioned devotion to saving life at all costs is compelling for clinicians, patients, and their loved ones. Led by this ideology, providers apply advanced medical care during advanced stages of disease as well as in emergency situations as an unconscious reflex—and most patients and families unquestionably accept it. Our current medical culture and health care system appear driven by the heroic use of all available medical care to rescue all patients, and prevent, or at least delay, deaths in all situations and at all costs (e.g., Chapple, 2010; Kaufman, 2005). As a result, “death seems distant from everyday life, bolstered by the 'mythology' of CPR” (Chapple, 2010, p. 3). Accompanying this rescue paradigm is the pervasive view that a patient's death is the clinician's defeat, leaving little room for asserting the necessity of ACP (e.g., Beckstrand, Callister, & Kirchhoff, 2006; Colby, 2006; Seravalli, 1988; Lynn, 2004).