The need for safeguards in advance care planning

The recent uproar about Medicare “death panels” draws attention to public and professional concerns that advance care planning might restrict access to desired life-sustaining care. The primary goal of advance care planning is to promote the autonomy of a decisionally incapacitated patient when choices about life-sustaining treatments are encountered, but the safety of this procedure has not received deserved scrutiny. Patients often do not understand their decisions or they may change their mind without changing their advance care directives. Likewise, concordance between patients’ wishes and the understanding of the physicians and surrogate decision makers who need to represent these wishes is disappointingly poor. A few recent reports show encouraging outcomes from advance care planning, but most studies indicate that the procedure is ineffective in protecting patients from unwanted treatments and may even undermine autonomy by leading to choices that do not reflect patient values, goals, and preferences. Safeguards for advance care planning should be put in place, such as encouraging physicians to err on the side of preserving life when advance care directives are unclear, requiring a trained advisor to review non-emergent patient choices to limit life-sustaining treatment, training of clinicians in conducting such conversations, and structured discussion formats that first address values and goals rather than particular life-sustaining procedures. Key targets for research include: how to improve completion rates for person wanting advance care directives, especially among minorities; more effective and standardized approaches to advance care planning discussions, including how best to present prognostic information to patients; methods for training clinicians and others to assist patients in this process; and systems for assuring that directives are available and up-to-date.     

Knowledge and perceptions in advance care planning

OBJECTIVE: This study explores detailed knowledge of medical terminology and connotations of equivocal phrases frequently used in advance care planning. METHOD: One hundred seventy community-dwelling older adults answered yes-or-no questions about their knowledge of medical conditions and treatments and completed a written questionnaire about their connotations of ambiguous phrases such as "live like a vegetable." RESULTS: On average, participants answered 78% of all factual questions correctly; however, accuracy ranged from 59% to 94% across individuals. Participants knew the most about basic treatment purposes and procedures and the least about treatment outcomes. Perceptions of equivocal phrases were idiosyncratic, even for conventional terms such as improvement. DISCUSSION: Older adults approach advance care planning with critical misconceptions and individualistic perceptions, about which family and health care professionals may be unaware. Efforts to improve advance care planning should include instruction concerning medical information and encouragement to use explicit language to express treatment preferences.     

Racial and ethnic differences in patients' preferences for initial care by specialists

PURPOSE: To examine racial and ethnic differences in patients' preferences for initial care by specialists, and to determine whether trust in the physician and health beliefs account for these differences. METHODS: We conducted a cross-sectional study of 646 patients in the waiting room of three academic-based internal medicine outpatient practices. We asked subjects about their preference to see their primary care provider or a specialist first regarding the actual health problem that had brought them to see their physician as well as regarding three hypothetical scenarios (2 weeks of new-onset exertional chest pain, 2 months of knee pain, and rash for 4 weeks). We examined the relation among patients' preference for initial care by a specialist and their demographic characteristics, global ratings of their primary care physician and health plan, trust in their primary care physician, and other health beliefs and attitudes. RESULTS: Averaged for the three scenarios and actual health problem, 13% of patients preferred to see a specialist first. Adjusting for all other covariates, blacks (risk ratio [RR] = 0.55; 95% confidence interval [CI]: 0.20 to 0.92) and Asians (RR = 0.46; 95% CI: 0.19 to 0.75) were much less likely to prefer a specialist than were whites. Patients with less confidence in their primary care physician and greater certainty about needed tests and treatments were more likely to prefer a specialist. These variables, however, did not explain the difference in preference for specialist care among blacks, Asians, and whites. CONCLUSION: Blacks and Asians are less likely than whites to prefer initial care by a specialist. Future studies should examine whether differences in preference for care lead minorities to underutilize appropriate specialty care or lead whites to overuse specialty care.     

Stages of change for the component behaviors of advance care planning

OBJECTIVES: To develop stages‐of‐change measures for advance care planning (ACP), conceptualized as a group of interrelated but separate behaviors, and to use these measures to characterize older persons' engagement in and factors associated with readiness to participate in ACP. DESIGN: Observational cohort study. SETTING: Community. PARTICIPANTS: Persons aged 65 and older recruited from physician offices and a senior center. MEASUREMENTS: Stages of change for six ACP behaviors: completion of a living will and healthcare proxy, communication with loved ones regarding use of life‐sustaining treatments and quantity versus quality of life, and communication with physicians about these same issues. RESULTS: Readiness to participate in ACP varied widely across behaviors. Whereas between approximately 50% and 60% of participants were in the action or maintenance stage for communicating with loved ones about life‐sustaining treatment and completing a living will, 40% were in the precontemplation stage for communicating with loved ones about quantity versus quality of life, and 70% and 75% were in the precontemplation stage for communicating with physicians. Participants were frequently in different stages for different behaviors. Few sociodemographic, health, or psychosocial factors were associated with stages of change for completing a living will, but a broader range of factors was associated with stages of change for communication with loved ones about quantity versus quality of life. CONCLUSION: Older persons show a range of readiness to engage in different aspects of ACP. Individualized assessment and interventions targeted to stage of behavior change for each component of ACP may be an effective strategy to increase participation in ACP.     

Disparities in advance care planning among older US immigrants

Background

Despite known racial disparities in advance care planning (ACP), little is known about ACP disparities experienced by US immigrants.

Methods

We used data from the 2016 wave of the Health and Retirement Study. We defined ACP engagement as self-reported end-of-life (EOL) discussions, designation of a power of attorney (DPOA), documented living will, or “any” of the three behaviors. Immigration status was determined by respondent-reported birth outside the United States. Time in the United States was calculated by subtracting the year of arrival in the United States from the survey year of 2016. We used multivariable logistic regression to estimate the association between ACP engagement and immigration status and the relationship of acculturation to ACP engagement, adjusting for sociodemographics, religiosity, and life expectancy.

Results

Of the total cohort (N = 9928), 10% were immigrants; 45% of immigrants identified as Hispanic. After adjustment, immigrants had significantly lower adjusted probability of any ACP engagement (immigrants: 74% vs. US-born: 83%, p < 0.001), EOL discussions (67% vs. 77%, p < 0.001), DPOA designation (50% vs. 59%, p = 0.001) and living will documentation (50% vs. 56%, p = 0.03). Among immigrants, each year in the United States was associated with a 4% increase in the odds of any ACP engagement (aOR 1.04, 95% CI 1.03–1.06), ranging from 36% engaged 10 years after immigration to 78% after 70 years.

Conclusion

ACP engagement was lower for US immigrants compared to US-born older adults, particularly for those that recently immigrated. Future studies should explore strategies to reduce disparities in ACP and the unique ACP needs among different immigrant populations.     

Knowledge regarding advance care planning: A systematic review

BackgroundLack of knowledge is one of the main reasons for the low rates of completion of Advance Care Planning (ACP).ObjectiveThe purpose of this study was to systematically review the existing literature on knowledge regarding Advance Care Planning.MethodsA systematic search of the literature was made in CINHAL, AgeLine, PubMed, PsyINFO and SocINDEX, from 1994 till May 2016.ResultsWe identified 37 articles that satisfied the inclusion criteria: 35 were quantitative, one was qualitative and one used mixed methods. Most of the studies (n = 23) were conducted in the United States and participants in most of the studies (n = 22) were professionals. A variety of aspects of ACP were examined, regarding subjective and objective knowledge. Seventeen studies found that participants knew some aspects of ACP, but didn’t know others. Inconsistencies were found in the types of instruments and the number of items used to assess knowledge.ConclusionsMore effort should be invested in increasing knowledge regarding ACP among professionals and lay people. Developing validated tools to measure objective and subjective knowledge in both populations might be a first step in this direction.