Uncertainty About Advance Care Planning Treatment Preferences Among Diverse Older Adults

Abstract

The complexities associated with advance treatment decisions may result in decisional uncertainty and poorly informed choices, particularly among vulnerable populations such as minorities and patients with limited health literacy. Using a hypothetical scenario, we assessed uncertainty about treatment preferences among 205 chronically-ill, English/Spanish-speaking older adults from a county outpatient clinic in San Francisco. Participants were read a scenrio that described a very poor health state and poor outcome of life support treatment. Participants were asked to imagine that they were in this scenario and to choose either: all life support (LS) treatments; try LS with an option of stopping; or no LS. They were then asked how certain they were about this decision. Forty five percent of participants were uncertain about their decision. In adjusted multivariate analysis, Latinos and Asian/Pacific Islanders were more likely than Whites to be uncertain about their treatment decisions as were participants with limited versus adequate literacy and poor versus good self-rated health. Many patients may be uncertain about advance treatment preferences. Culturally sensitive, literacy-appropriate tools are needed to address decisional uncertainty and to help patients prepare for decision making about their future health care.

Advance Care Planning Does Not Adversely Affect Hope or Anxiety Among Patients With Advanced Cancer

“…As many critics of advance directives have pointed out, 13,64,65 no document, however, well conceived, is likely to adequately address the full scope of real-life clinical decisions. However, if we wish to honor patients' wishes regarding the medical care they receive during times of serious illness, then we must find ways to help them engage in ACP without causing additional duress.…”

Empirical relationships between health literacy and treatment decision making: A scoping review of the literature

“…In the five studies that did not involve the use of a PDA, patients' scores on a measure of HL were examined in relation to: patients' uncertainty about decisions made about life sustaining treatment after exposure to a hypothetical scenario [29]; patients' assessments of their doctors' decision making [26,46]; patients' endorsement of a particular intervention (chemotherapy) for a fictitious group of patients [9]; and patients' decision to stop or decrease their medications (for asthma) [32]. Across these studies, the findings were variable, largely non-overlapping, and non-comparable.…”

The need for safeguards in advance care planning

“…[20][21][22][23] Patients may not even remember their choices a year later. 24 Decisions can be made despite considerable uncertainty about one's wishes, especially among minority and low-literacy patients and those considering themselves to be in poor health 25 . Hypothetical discussions have limited bearing on decisions made later when faced by a concrete situation.…”