Three Year Functional Trajectories Among Old Age Survivors and Decedents: Dying Eliminates a Racial Disparity.

BACKGROUND: Long-term trajectories of disability comparing decedents and survivors and differences by race have not been assessed. OBJECTIVE: To examine self-reported difficulty in walking a quarter mile and the need for assistance with activities of daily living (ADL) beginning 3 years before death among decedents and age- and gender-matched survivors. DESIGN: A case-control sample drawn from the Health, Aging and Body Composition Study (Health ABC). Data were collected between 1997 and 2015. PARTICIPANTS: Of the 1991 participants who died by the end of the study, 1410 were interviewed for 3 years prior to death, including an interview 6 months before dying. Of these, 1379 decedents were successfully matched by age and gender with 1379 survivors and tracked over the same 3-year period. MAIN MEASURES: Self-reported difficulty walking a quarter mile and the ability to perform activities of daily living without assistance (bathing, dressing, transferring). KEY RESULTS: Decedents (mean age at death, 84) increased in mobility disability from 44.1% 3 years before death to 69.4% 6 months before death and in ADL disability from 32.9% to 58.4%. Among survivors, mobility disability increased from 31.4% to 40.7% and ADL disability from 17.4% to 31.4%. The proportion of decedents and survivors with mobility disability differed significantly in adjusted models at all assessment points (p < 0.0001). African-American survivors were significantly more disabled than White survivors at all points (p < 0.0001), but trajectories of disability among decedents did not differ by race in the last 18 months of life (p = 0.35). CONCLUSIONS: Trajectories of self-reported disability differ between survivors and decedents. Older adults who died were more disabled 3 years before death and also had a greater risk of increasing disability over each subsequent 6-month assessment. The gap in disability between African Americans and Whites was erased in the final 1 to 1.5 years before death.

Symptom trends in the last year of life from 1998 to 2010: a cohort study.

BACKGROUND: Calls for improvement in end-of-life care have focused attention on the management of pain and other troubling symptoms at the end of life. OBJECTIVE: To describe changes in pain intensity and symptom prevalence during the last year of life from 1998 to 2010. DESIGN: Observational study. SETTING: The HRS (Health and Retirement Study), a nationally representative longitudinal survey of community-dwelling U.S. residents aged 51 years or older. PARTICIPANTS: 7204 HRS participants who died while enrolled in the study and their family respondents. MEASUREMENTS: Proxy-reported pain during the last year of life and other symptoms for at least 1 month during the last year of life. Trends in pain intensity and symptom prevalence were analyzed for all decedents and within the categories of sudden death, cancer, congestive heart failure or chronic lung disease, and frailty. RESULTS: Between 1998 and 2010, proxy reports of the prevalence of any pain increased for all decedents from 54.3% (95% CI, 51.6% to 57.1%) to 60.8% (CI, 58.2% to 63.4%), an increase of 11.9% (CI, 3.1% to 21.4%). Reported prevalences of depression and periodic confusion also increased for all decedents by 26.6% (CI, 14.5% to 40.1%) and 31.3% (CI, 18.6% to 45.1%), respectively. Individual symptoms increased in prevalence among specific decedent categories, except in cancer, which showed no significant changes. The prevalence of moderate or severe pain did not change among all decedents or in any specific decedent category. LIMITATION: Use of proxy reports and limited information about some patient and surrogate variables. CONCLUSION: Despite national efforts to improve end-of-life care, proxy reports of pain and other alarming symptoms in the last year of life increased from 1998 to 2010. PRIMARY FUNDING SOURCE: National Institute of Nursing Research.

Fluctuating Physical Function and Health: Their Role at the End of Life.

BACKGROUND: Our recent research suggests that a fluctuating trajectory, previously thought to be the experience of those dying with heart failure or chronic lung disease, may not accurately characterize the end of life for these patients. OBJECTIVE: We sought to further examine health and function to investigate whether other measures or a different time frame captures the purported exacerbation/recovery trajectory associated with these diseases. DESIGN: Function and health data were collected prospectively at six-month intervals for 17 years during the Heath, Aging and Body Composition Study. SUBJECTS AND MEASURES: We analyzed self-reported mobility, health status, and health care utilization for 1410 decedents, defining high fluctuations as transitions in two or more adjacent assessment pairs during the last three years of life. RESULTS: Among decedents, only 207 (14.7%) reported two or more changes in mobility during the last three years of life; and 586 (41.6%) reported more than two transitions in self-reported health during the period. This fluctuation was not associated with any clinical condition in the three years before death, but decedents with chronic heart failure or chronic lung disease reported significantly more changes in mobility (odds ratio = 1.15, p = 0.025) for a longer follow-up period. Decedents with heart failure were also more likely to report hospital stays in the last three years of life. CONCLUSIONS: Fluctuations in mobility and self-reported health do not differ by clinical condition in the three years before death, but people dying with chronic heart failure or chronic lung disease are more frequently hospitalized during this period and experience more unstable mobility for a longer period of observation.

Mobility Trajectories at the End of Life: Comparing Clinical Condition and Latent Class Approaches.

OBJECTIVES: To assess mobility disability trajectories before death in a large sample of very old adults using two analytical approaches to determine how well they corresponded. DESIGN: Decedent sample from the Health, Aging and Body Composition (Health ABC) Study. Data were collected between 1997 and 2015. SETTING: Pittsburgh, Pennsylvania, and Memphis, Tennessee. PARTICIPANTS: Individuals randomly selected from well-functioning white Medicare beneficiaries and all black community residents meeting age criteria (70-79) (N = 3,075). MEASUREMENTS: Participants were interviewed in person or by phone at least every six months throughout the study. Of the 1,991 participants who died by the end of the study, 1,410 had been interviewed for 3 years before death, including an interview 6 months before dying. We analyzed self-reported mobility collected prospectively at 6-month intervals during the last 3 years of life. We derived trajectories in two ways: by averaging decline within decedent groups prespecified according to clinical conditions and by estimating trajectory models using maximum-likelihood semiparametric modeling. RESULTS: Ninety-eight percent of decedents were classified according to 4 prespecified clinical conditions (sudden death, terminal, organ failure, frailty), which produced groups with different characteristics. Five disability trajectories were identified: late decline, progressive disability, moderate disability, early decline, and persistent disability. Disability trajectory and clinical condition grouping confirmed previous research but were only marginally related. CONCLUSION: Derived disability trajectories and grouping according to clinical condition provide useful information about different facets of the end-of-life experience. The lack of fit between them suggests a need for greater attention to heterogeneity in disability in the period before death.

Are Preferences for Aggressive Medical Treatment Associated with Healthcare Utilization in the Very Old?

Objectives: To examine the relationship between end-of-life (EOL) treatment preferences and recent hospitalization or emergency department (ED) care in the very old. Design: Quarterly telephone follow-up of participants in the EOL in the Very Old cohort. Setting: The EOL in the Very Old Age cohort drew from 1403 participants in the Health, Aging, and Body Composition (Health ABC) study who were alive in year 15 of follow-up. 87.5% (n = 1227) were successfully recontacted and enrolled. Participants: Preferences for treatment at the EOL and reported hospital and ED use were examined for 1118 participants (18% involving proxy reports) over 6 months, 1021 (16% with proxy reports) over 12 months, and 945 (23% with proxy reports) over 18 months in 6-month intervals. Measurements: Preferences for eight EOL treatments, elicited once each year; hospitalization and ED use reported every six months. Results: Preferences for more aggressive treatment (endorsing ≥5 of 8 options) were not significantly associated with inpatient or ED treatment. Inpatient and ED treatment were not associated with changes in preferences for aggressive EOL treatment over 12 months. Conclusion: Alternative measures that tap attitudes toward routine care, rather than EOL treatment preferences, may be more highly associated with healthcare utilization.

Factors Associated with Family Reports of Pain, Dyspnea, and Depression in the Last Year of Life.

BACKGROUND: Pain, dyspnea, and depression are highly troubling near the end of life. OBJECTIVE: To characterize factors associated with clinically significant pain and the presence of dyspnea and depression during the last year of life in a nationally representative sample. DESIGN: Retrospective cohort study. SETTING: Health and Retirement Study, a national sample of community-dwelling US residents aged 51 and older. PARTICIPANTS: Family respondents of 8254 decedents who died between 1998 and 2012. MEASUREMENTS: Clinically significant pain often during the last year of life; dyspnea and depression for at least one month during the last year of life. RESULTS: Life support was associated with dyspnea (odds ratio [OR] 1.71, 95% confidence interval [CI] 1.42-2.06) and depression (OR 1.20, CI 1.04-1.39), treatment for cancer with pain (OR 1.65, CI 1.41-1.92), and oxygen for a lung condition with dyspnea (OR 14.78, CI 11.28-19.38). More diagnoses were associated with dyspnea (OR 1.24, CI 1.17-1.30) and depression (OR 1.14, CI 1.08-1.21). More activities of daily living (ADL) dependencies were associated with clinically significant pain (OR 1.06, CI 1.03-1.09), dyspnea (OR 1.06, CI 1.02-1.10), and depression (OR 1.10, CI 1.07-1.12), and more instrumental activities of daily living (IADL) dependencies with depression (OR 1.12, CI 1.08-1.18). Worse self-rated health was associated with pain (OR 0.83, CI 0.77-0.88), dyspnea (OR 0.89, CI 0.84-0.95), and depression (OR 0.83, CI 0.78-0.89). Arthritis was associated with clinically significant pain (OR 2.24, CI 1.91-2.63). CONCLUSIONS: Factors associated with common, burdensome symptoms in a national sample suggest clinical and population strategies for targeting symptom assessment and management.

Symptom Burden and End-of-Life Treatment Preferences in the Very Old.

CONTEXT: End-of-life (EOL) treatment preferences among the very old (age 85+) may differ from preferences in younger aged populations because of high levels of symptom burden and disability and high risk of mortality. It is unclear if symptom burden or level of disability is more important for such preferences. OBJECTIVES: To investigate whether distress from daily symptom burden was an independent correlate of EOL treatment preferences over two years of follow-up in people with median age 86 (participants) and 88 (reported by proxies) at baseline. METHODS: The End of Life in Very Old Age is an ancillary study to the Health, Aging and Body Composition study. At baseline in Year 15 of Health, Aging and Body Composition, 1038 participants and 189 proxies reported levels of symptom distress every quarter, as well as 0-8 EOL treatment preferences elicited once each year. RESULTS: At baseline, the mean (SD) count of EOL treatment preferences was 4.2 (2.1) in participants, and 2.9 (2.3) in proxies. EOL treatment preference was not associated with symptom distress. By contrast, black race, male gender, and reported ease walking a quarter mile were independently associated with more aggressive EOL treatment preferences. CONCLUSION: Preferences for more aggressive EOL treatment were not related to daily symptom distress but were significantly more likely to be endorsed among those with better mobility, suggesting that disability is an independent predictor of EOL treatment preferences in the very old.

Profiles of older medicare decedents.

OBJECTIVES: To evaluate the usefulness of a clinical scheme to classify older decedents to better understand the issues associated with healthcare use and costs in the last year of life. DESIGN: We analyzed Medicare claims data for a random sample of 0.1% of all Medicare beneficiaries with expenditures between 1993 and 1998. This sample yielded 7,966 deaths. SETTING: Medicare claims data. PARTICIPANTS: Medicare beneficiaries. MEASUREMENTS: We classified decedents into groups representing four trajectories at the end of life: sudden death, terminal illness, organ failure, and frailty. RESULTS: Ninety-two percent of decedents were captured by the profiling strategy. The four trajectory groups had distinct patterns of demographics, care delivery, and Medicare expenditures. Frailty was a dominant pattern, with 47% of all decedents, whereas sudden death claimed only 7%; cancer claimed 22%, and organ system failure, 16%. CONCLUSIONS: The clinical scheme to classify decedents appears to fit most decedents and to form groups with substantial clinical differences. Acknowledging the differences among these groups may be a fruitful way to evaluate expenditures and develop strategies to improve care at the end of life.

Prognostic significance of the "surprise" question in cancer patients.

BACKGROUND: Physicians consistently overestimate survival for patients with cancer. The "surprise" question--"Would I be surprised if this patient died in the next year?"--improves end-of-life care by identifying patients with a poor prognosis. It has not been previously studied in patients with cancer. OBJECTIVE: To determine the efficacy of the surprise question in patients with cancer. DESIGN: Prospective cohort study. SETTING: Academic cancer center. PATIENTS: 853 consecutive patients with breast, lung, or colon cancer. MEASUREMENTS: Surprise question classification and patient status at 12 months, alive or dead, by surprise question response. RESULTS: Oncologists classified 826 of 853 prospective patients with cancer (97%) with 131 (16%) classified into the "No" group and 695 (84%) into the "Yes" group. In multivariate analysis, a "No" response identified patients with cancer who had a seven times greater hazard of death in the next year compared to patients in the "Yes" group (HR 7.787, p < 0.001). LIMITATIONS: Single center study. CONCLUSION: The surprise question is a simple, feasible, and effective tool to identify patients with cancer who have a greatly increased risk of 1-year mortality.

Patterns of functional decline at the end of life.

CONTEXT: Clinicians have observed various patterns of functional decline at the end of life, but few empirical data have tested these patterns in large populations. OBJECTIVE: To determine if functional decline differs among 4 types of illness trajectories: sudden death, cancer death, death from organ failure, and frailty. DESIGN, SETTING, AND PARTICIPANTS: Cohort analysis of data from 4 US regions in the prospective, longitudinal Established Populations for Epidemiologic Studies of the Elderly (EPESE) study. Of the 14 456 participants aged 65 years or older who provided interviews at baseline (1981-1987), 4871 died during the first 6 years of follow-up; 4190 (86%) of these provided interviews within 1 year before dying. These decedents were evenly distributed in 12 cohorts based on the number of months between the final interview and death. MAIN OUTCOME MEASURES: Self- or proxy-reported physical function (performance of 7 activities of daily living [ADLs]) within 1 year prior to death; predicted ADL dependency prior to death. RESULTS: Mean function declined across the 12 cohorts, simulating individual decline in the final year of life. Sudden death decedents were highly functional even in the last month before death (mean [95% confidence interval [CI]] numbers of ADL dependencies: 0.69 [0.19-1.19] at 12 months before death vs 1.22 [0.59-1.85] at the final month of life, P =.20); cancer decedents were highly functional early in their final year but markedly more disabled 3 months prior to death (0.77 [0.30-1.24] vs 4.09 [3.37-4.81], P<.001); organ failure decedents experienced a fluctuating pattern of decline, with substantially poorer function during the last 3 months before death (2.10 [1.49-2.70] vs 3.66 [2.94-4.38], P<.001); and frail decedents were relatively more disabled in the final year and especially dependent during the last month (2.92 [2.24-3.60] vs 5.84 [5.33-6.35], P<.001). After controlling for age, sex, race, education, marital status, interval between final interview and death, and other demographic differences, frail decedents were more than 8 times more likely than sudden death decedents to be ADL dependent (OR, 8.32 [95% CI, 6.46-10.73); cancer decedents, one and a half times more likely (OR, 1.57 [95% CI, 1.25-1.96]); and organ failure decedents, 3 times more likely (OR, 3.00 [95% CI, 2.39-3.77]). CONCLUSIONS: Trajectories of functional decline at the end of life are quite variable. Differentiating among expected trajectories and related needs would help shape tailored strategies and better programs of care prior to death.