Potential Benefits of Advance Care Planning
Research has indicated that planning for medical care in advance can help in managing the emotional conflict engendered in decisions about care near the EOL. ACP can help patients ensure self-determination and quality of life near the EOL by making sure that patients receive the care they desire, thereby bringing peace of mind, comfort, and certainty to patients, their loved ones, and clinicians.
As Halpern and Emanuel (2012) observed, documenting care preferences can “assuage guilt, doubts, or lingering uncertainty” (p. 267) over care decisions made on behalf of another. Importantly, the authors acknowledge that making health care decisions in these situations without benefit of the patient's clearly expressed—and understood—desires for care can cause remorse, anxiety, and doubt in clinicians, patients' loved ones, and patients' surrogate decision makers. Therefore, in addition to other benefits, using ADs to facilitate communication about ACP can reduce stress, anxiety, and depression in surviving relatives and advocates, and protect patients' loved ones, their advocates, and clinicians from “the burdens of surrogate decision making” (p. 266).
Challenges to Effective Advance Care Planning
Taken together, the legal, medical, and cultural problems with ADs exist in no small part because the forms emphasize delineation of care, and obscure the need for ongoing communication about ACP. The forms approach to documenting and communicating about desired health care was perpetuated and shaped by legislation such as the PSDA of 1990. The PSDA served as an information and education mandate to Medicare and Medicaid laws requiring hospitals to inform patients about the opportunity to provide ADs. The act, however, did not require completion of or communication about ADs nor reimburse clinicians for communicating with patients and their loved ones about their wishes for EOL. Despite the high hopes there had been about passage of the PSDA, research soon began to show that the legislation had had little effect. The findings of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), a comprehensive intervention and research project looking at provider–patient communication about EOL care preferences (Teno et al., 1997), found that “neither the legislation nor the SUPPORT intervention had major impacts on the documentation of patients' preferences regarding end-of-life care” (Garas & Pantilat, 2001).
The SUPPORT researchers and other studies have found a number of problems with ADs. They are as follows:
ADs are disappointingly underused. Kass-Bartelmes and Hughes (2003) and Sabatino (2010) observed that despite years of enthusiastic advocacy by major health care organizations, ADs have not been as widely used as hoped. Consequently, many patients transition into physical and mental incapacity and enter EOL care without a health care advocate and without having ADs in place. Without ADs and an advocate, patients may receive unwanted aggressive medical care. Such care may be burdensome and costly and may prolong suffering in a degraded quality of life.
Reluctance to Talk About Death and Dying
Research on EOL decision making reveals that people have difficulty both asking and answering important questions about EOL care planning for themselves and for their loved ones. In addition, physicians themselves may not take the initiative to talk about dying and EOL decision making with their patients. In a report to the U.S. Department of Health and Human Services, researchers for the RAND Corporation (Wenger et al., 2008) reported that physicians cite “lack of time, lack of formal training in and knowledge of palliative measures, belief that patients and families do not want to engage in such discussions, association of palliative care with death, and lack of belief that such discussions are needed” (p. xi).