Understanding changes in decision making among older adults across time is important for health care providers. We examined how older adults with a limited prognosis used their perception of prognosis and health in their decision-making processes and related these findings to prospect theory. The theme of decision making in the context of ambiguity emerged, reflecting how participants used both prognosis and health to value choices, a behavior not fully captured by prospect theory. We propose an extension of the theory that can be used to better visualize decision making at this unique time of life among older adults.

Background

Older black and Latino Americans are more likely than white Americans to die in the hospital. Whether ethnic differences in expectation of death account for this disparity is unknown.

Objectives

To determine whether surviving family members' expectation of death has a differential association with site of death according to race or ethnicity.

Methods

We conducted an analysis of decedents from the Health and Retirement Study, a nationally representative study of US older adults. Telephone surveys were conducted with family members for 5979 decedents (decedents were 55% were women, 85% white, 9% black, and 6% Latino). The outcome of interest was death in the hospital; the predictor variable was race/ethnicity, and the intervening variable was expectation of death. Covariates included sociodemographics (gender, age, household net worth, educational attainment level, religion) and health factors (chronic conditions, symptoms, health-care utilization).

Results

Decedents' race/ethnicity was statistically related to the expectation of death and death in the hospital. When death was not expected, whites and Latinos were more likely to die in the hospital than when death was expected (49% vs 29% for whites and 55% vs 37% for Latinos; P < .001). There was no difference in site of death according to family's expectation of death among blacks.

Conclusion

Expectation of death did not fully account for site of death and played a greater role among whites and Latinos than among black Americans. Discussing prognosis by itself is unlikely to address ethnic disparities. Other factors appear to play an important role as well.

Objectives

To explore how older adults in the community with a limited life expectancy make healthcare decisions and the processes used when they are not in an acute crisis.

Design

Grounded theory.

Setting

Medical programs and geriatrics clinics at the University of California, San Francisco, and the San Francisco Veterans Affairs Medical Center.

Participants

Community-dwelling adults aged 67 to 98 with a life expectancy of less than 1 year (N = 20).

Measurements

In-depth semistructured interviews in participants' homes. Constant comparative analysis was used to develop codes and identify themes.

Results

Participants generally delegated decisions to others, expressing their wishes by describing desired end-of-life outcomes and highlighting meaningful aspects of their lives. They did this in the belief that the delegate would make appropriate decisions on their behalf. In this way, participants were able to achieve a sense of control without being in control of decisions. Four themes emerged from the analysis that reflect the various approaches participants used to articulate their goals and maintain a sense of control: direct communication, third-party analogies, adaptive denial, and engaged avoidance.

Conclusion

These findings challenge the prevailing view of personal autonomy. These older adults suggest a path to decision-making that focuses on priorities and goals, allowing them to take a more-passive approach to decision-making while still maintaining a sense of control.

Objectives

To characterize the goals and approaches of clinicians with experience discussing long-term prognostic information with older adults.

Design

We used a semistructured interview guide containing 2 domains of perceived benefits and strategies to explore why and how clinicians choose to discuss long-term prognosis, defined as life expectancy on the scale of years, with patients.

Setting

Clinicians from home-based primary care practices, community-based clinics, and academic medical centers across San Francisco.

Participants

Fourteen physicians, including 11 geriatricians and 1 geriatric nurse practitioner, with a mean age of 40 and a mean 9 years in practice.

Measurements

Clinician responses were analyzed qualitatively using the constant comparisons approach.

Results

Perceived benefits of discussing long-term prognosis included establishing realistic expectations for patients, encouraging conversations about future planning, and promoting shared decision-making through understanding of patient goals of care. Communication strategies included adapting discussions to individual patient preferences and engaging in multiple conversations over time. Clinicians preferred to communicate prognosis in words and with a visual aid, although most did not know of a suitable visual aid.

Conclusion

Engaging in customized longitudinal discussions of long-term prognosis aids clinicians in anchoring conversations about future planning and preparing patients for the end of life. J Am Geriatr Soc 66:2367-2371, 2018.

Purpose

Researchers often use the term "successful aging" to mean freedom from disability, yet the perspectives of elders living with late-life disability have not been well described. The purpose of this study was to explore the meaning of successful aging among a diverse sample of community-dwelling elders with late-life disability.

Design and methods

Using qualitative grounded theory methodology, we interviewed 56 African American, White, Cantonese-speaking Chinese, and Spanish-speaking Latino disabled elders who participate in On Lok Lifeways, a Program of All-inclusive Care for the Elderly. Through semi-structured interviews with open-ended questions, we explored the elders' perceptions of what successful aging and being old meant to them.

Results

Despite experiencing late-life disability, most participants felt they had aged successfully. An overarching theme was that aging results in Living in a New Reality, with two subthemes: Acknowledging the New Reality and Rejecting the New Reality. Participants achieved successful aging by using adaptation and coping strategies to align their perception of successful aging with their experiences. Themes were common across race/ethnic groups but certain strategies were more prominent among different groups.

Implications

Across race and ethnic groups, most of these participants with late-life disability felt they had aged successfully. Thus, successful aging involves subjective criteria and has a cultural context that is not captured in objective measurements. Understanding elders' perception will help establish common ground for communication between clinicians and elders and identify the most appropriate interventions to help elders achieve and maintain the experience of successful aging.

Importance

Long-term prognosis informs clinical and personal decisions for older adults with late-life disability. However, many clinicians worry that telling patients their prognosis may cause harm.

Objective

To explore the safety of and reactions to prognosis communication in late-life disability.

Design

Participants estimated their own life expectancy and were then presented their calculated life expectancy using a validated prognostic index. We used a semi-structured interview guide to ask for their reactions. Qualitative data were analyzed using constant comparative analysis. Potential psychological and behavioral outcomes in response to receiving one's calculated prognosis were recorded and re-assessed 2-4 weeks later.

Setting

Community-dwelling older adults age 70+ residing in the San Francisco Bay Area.

Participants

Thirty five older adults with a median age of 80 requiring assistance with ≥1 Activity of Daily Living.

Results

Self-estimates of life expectancy were similar to calculated results for 16 participants. 15 estimated their life expectancy to be longer than their calculated life expectancy by >2 years, while 4 shorter by >2 years. An overarching theme of, "fitting life expectancy into one's narrative" emerged from qualitative analysis. Discussing life expectancy led participants to express how they could alter their life expectancy (subtheme "locus of control"), how they saw their present health (subtheme "perceived health"), and their hopes and fears for the remaining years of their lives (subtheme "outlook on remaining years"). Feelings of anxiety and sadness in reaction to receiving calculated prognosis were rare.

Conclusions and relevance

About half of the disabled older adults' self-estimates of prognosis were similar to calculated estimates. Evidence of sadness or anxiety was rare. These data suggest that in most cases, clinicians may offer to discuss prognosis.