Abstract and Introduction
Abstract
Background: Although patient participation in treatment decisions is important for preference-concordant care delivery, it is largely unknown how cognitive impairment influences treatment preferences. We investigated whether treatment preferences for the care of serious illness differ between adults with and without cognitive impairment in hypothetical clinical scenarios.
Methods: Data from the 2018 Health and Retirement Study were used. The sample included 1291 self-respondents (201 respondents with cognitive impairment, and 1090 with normal cognition). We examined treatment preferences for life-extending, limited, and comfort care options in two hypothetical clinical scenarios where the respondent imagines a patient with (1) good physical health with severe cognitive impairment consistent with dementia; and (2) with physical impairment due to a heart attack, but normal cognition. Respondents specified whether they were unsure, or if they would want or not want each treatment option. Linear probability models were used to compare treatment preferences by cognitive status.
Results: Respondents with cognitive impairment were more likely to report that they were unsure about treatment options across both clinical scenarios compared to those with normal cognition. For the limited treatment option, cognitive impairment was associated with a lower rate of expressing a treatment preference by 7.3 (p = 0.070) and 8.5 (p = 0.035) percentage points for dementia and heart attack scenarios, respectively. Among those who articulated preferences, cognitive impairment was associated with a higher rate of preference for life-extending treatment in both dementia (30.1% vs. 20.0%, p = 0.044) and heart attack scenarios (30.0% vs. 20.2%, p = 0.033).
Conclusions: Compared to those with normal cognition, cognitive impairment was associated with greater uncertainty about treatment preferences and higher rates of aggressive care preferences among those who specified preferences. Further research should assess whether preferences for aggressive care become more common as cognition declines in order to improve preference-concordant care delivery for patients with cognitive impairment.
Introduction
Patient participation in treatment decisions is important for aligning care with patients' values, preferences, and goals. However, a common consequence of cognitive impairment is reduced decision-making capacity, which frequently results in a need for surrogate decision-making for healthcare treatment decisions.[1] Experts suggest that advance care planning, such as preparation of a living will and durable power of attorney for health care, and discussions surrounding future treatment decisions, values, and care goals, should be completed at early signs of cognitive impairment or before onset to ensure patient preferences are clearly identified and followed.[2–5] It is unclear, however, whether treatment preferences expressed prior to the onset of cognitive impairment are similar to those expressed after onset. If preferences, risk tolerance, and perception change as cognition deteriorate, surrogates relying on documents prepared prior to cognitive decline may lack accurate information about current preferences.
Assessing treatment preferences in individuals with early signs of impairment is a useful study because they are still able to participate in research studies. Evidence is conflicting, however, as to whether individuals with early cognitive decline are able to preserve treatment decision capacity. Several studies have found that individuals with mild cognitive impairment (MCI), a clinical diagnosis of an intermediate cognitive state between normal cognition and dementia, are at risk for a decline in a medical decision-making capacity.[6–8] A recent meta-analysis of seven studies found a reduced capacity to consent to medical treatment and research participation in persons with MCI.[8] Evidence suggests that those with MCI are generally deficient in important consent to treat capacity measures including appreciation, reasoning, and understanding.[6,9,10] One study found that around 40% of participants with MCI were considered incapable of consent.[10] Those with MCI are more likely to exhibit poor decision-making such as susceptibility to scams[11] and financial decision-making.[12–14] Adverse financial events such as missed credit card payments are more prevalent prior to a diagnosis of dementia.[14]
However, other studies suggest that most people with MCI are able to retain decisional capacity.[15,16] Karlawish (2008) found that those with mild to moderate Alzheimer's disease were able to participate in treatment decisions.[15] Similarly, Horton-Deutsch and colleagues (2007) found that most participants with mild to moderate dementia were able to explain their rationale for their treatment decisions.[16] Other studies suggest that individuals with MCI are able to make daily living decisions such as selecting surrogates,[17] making financial decisions,[18] and managing medications.[19] A National Institute on Aging and Alzheimer's Association workgroup stated that individuals with MCI, "may take more time, be less efficient, and make more errors at performing such activities than in the past. Nevertheless, they generally maintain their independence of function in daily life, with minimal aids or assistance."[20] Moreover, those with cognitive impairment typically indicate a desire to be the primary decision-maker and participate in treatment decisions.[21] Caregivers agree that loved ones with cognitive decline should remain involved in treatment decisions.[20,22] Although cognitive impairment impacts decision-making, providers should involve patients in treatment decisions to the extent possible.
This study assesses whether cognitive impairment is associated with different treatment preferences for serious illness care among older adults who can still participate in survey research. How treatment preferences vary by cognitive status is largely unknown. A recent study found that individuals with MCI express no difference in life-extending treatment preferences compared to those with normal cognition; however, the study included only 66 participants with MCI that were recruited from two academic medical centers.[23] We build on this work using new, nationally-representative survey data from the Health and Retirement Study.
J Am Geriatr Soc. 2022;70(12):3390-3401. © 2022 Blackwell Publishing
