Preferences for life-sustaining treatments in advance care planning and surrogate decision making.

BACKGROUND: Surrogates and clinicians often make treatment decisions for decisionally incapacitated patients with limited knowledge of their preferences. This study examined patients' life-sustaining treatment preferences to facilitate advance care planning discussions and surrogate decision making. METHODS: We interviewed 342 participants from 7 groups: younger and older well adults; persons with chronic illness, terminal cancer, and acquired immunodeficiency syndrome (AIDS); stroke survivors; and nursing home residents. Preferences for antibiotics, short- and long-term mechanical ventilation, hemodialysis, tube feeding, and cardiopulmonary resuscitation (CPR) were elicited for each participant's current health state and three hypothetical health states representing severe dementia, coma, and severe stroke. RESULTS: Participants chose to forego more invasive or long-term treatments at a higher rate than less invasive, short-term treatments in all health states. Participants were much more willing to forego treatments in coma than in their current health state, with stroke and dementia somewhere in between. Participants who were older, female, had worse functional status, had more depressive symptoms, or lived in a nursing home were more inclined to forego treatment in their current health state. In contrast, treatment preferences in hypothetical health states showed either no associations or much weaker associations with these factors. Participants who were willing to accept more invasive treatments were highly likely to accept less invasive treatments and participants who preferred to forego a less invasive treatment were highly likely to forego more invasive treatments. Participants who preferred to receive a treatment in a health state with severe impairments were highly likely to want the same treatment in a less impaired health state. Similarly, participants who preferred to forego a treatment in a less impaired health state were highly likely to forego the same treatment in a more impaired state. CONCLUSIONS: In advance care planning discussions, clinicians might explore with patients their preferences about short- and long-term treatments with variability in their invasiveness (including CPR) in both their current health state and hypothetical situations representing different levels of functional impairment. When surrogates have no knowledge about the wishes of formerly competent patients, clinicians may help them with medical decisions by discussing what other people commonly want in similar circumstances.

Validation of preferences for life-sustaining treatment: implications for advance care planning.

BACKGROUND: Treatment preferences established before life-threatening Illness occurs may differ from actual decisions because of changes in preferences or poor understanding of the link between prospective preferences and outcomes. OBJECTIVES: To evaluate the validity of prospective treatment preferences by examining their concordance with ratings of health states. DESIGN: Survey of seven cohorts of persons with diverse health status. Home- and hospital-based interviews were conducted at baseline and at 6, 18, and 30 months. SETTING: The greater Seattle area. PARTICIPANTS: Younger and older well adults; persons with chronic conditions, terminal cancer, or AIDS; stroke survivors; and nursing home residents. MEASUREMENTS: Concordance between six treatment preferences and five health state ratings (on a seven-point scale) was assessed by using logistic regression to measure the increase in odds of treatment refusal for each one-point change in health state rating. Preferences were considered concordant if treatments were refused in health states rated as worse than death and were accepted in health states rated as better than death. Reasons for discordance were elicited at the final interview. RESULTS: The probability of refusal of prospective treatment was strongly related to health state ratings. Odds ratios ranged from 1.7 to 1.9 (P < 0.001) for every treatment. When patients were shown their discordant preferences, they had a coherent explanation or changed their health state rating or treatment preference to make the two concordant. CONCLUSIONS: Prospective life-sustaining treatment preferences show high convergent validity. For most persons, treatment preferences are grounded in a consistent belief system. Concordance and discordance between treatment preferences and health state ratings offer clinicians the opportunity to explore patients' values and reasoning.

Involuntary weight loss in older outpatients: incidence and clinical significance.

OBJECTIVES: To describe the incidence, anthropometric parameters, and clinical significance of weight loss in older outpatients. DESIGN: Four-year prospective cohort study. SETTING: University-affiliated Veterans Affairs Medical Center. PATIENTS: Two hundred forty-seven community-dwelling male veterans 65 years of age or older. MEASUREMENTS: Anthropometrics (weight, height, skin-folds, and circumferences), health status measures (Sickness Impact Profile scores, health care utilization, self-reported ratings of health), and bloodwork (cholesterol, albumin, others) were obtained at baseline and followed annually for 2 years. Outcome measures (hospitalization, nursing home placement, and mortality rates) were followed for a minimum of 2 years after any identified weight change. MAIN RESULTS: The mean annual percentage weight change for the study population was -0.5% (SD: +/- 4.0%; range: -17% to +25%). Four percent annual weight loss was determined to be the optimal cutpoint for defining clinically important involuntary weight loss using ROC curve analysis. The annual incidence of this degree of involuntary weight loss was 13.1%. At baseline, involuntary weight losers were similar to nonweight losers in age (73.9 +/- 7.9 vs 73.3 +/- 6.7 years), body mass index (26.8 +/- 3.9 vs 26.9 +/- 4.1 kg/m2), and all other anthropometric, health status, and laboratory measures. Relative to nonweight losers, involuntary weight losers had significantly (P < or = .05) greater decrements in central skinfold and circumference measures (subscapular skinfolds, -2.9 vs -0.4 mm; suprailiac skinfolds, -4.2 vs -0.2 mm; and waist to hip ratio, -.01 vs + .00). Both groups had significant decreases in their triceps skinfolds (an estimate of peripheral subcutaneous fat), whereas arm muscle area and albumin levels did not decline significantly in either group. Over a 2-year follow-up period, mortality rates were substantially higher (RR = 2.43; 95% CI = 1.34-4.41) among involuntary weight losers (28%) than among nonweight losers (11%). Of interest, a similar increase in 2-year mortality (36%) was also observed among subjects with voluntary weight loss (by dieting). Survival analyses adjusting for differences between weight losers and nonweight losers in baseline age, BMI, tobacco use, and other health status and laboratory measures yielded similar results. CONCLUSIONS: These results indicate that involuntary weight loss occurred frequently (13.1% annual incidence) in this population of older veteran outpatients. When involuntary weight loss occurred, the predominant anthropometric changes were decrements in measures of centrally distributed fat (trunkal skinfolds and circumferences). Finally, involuntary weight loss greater than 4% of body weight appears to be clinically important as an independent predictor of increased mortality.

Measuring preferences for health states worse than death.

Previous research indicates that persons assigning values to ranges of health states consider some states to be worse than death. In a study of decisions regarding life-sustaining treatments, the authors adapted and assessed existing methods for their ability to identify and quantify preferences for health states near to or worse than death in a population of well adults and nursing home residents. The cognitive burdens involved in these decisions were also evaluated. Hypothetical health states based on six attributes of functional status were constructed to describe severe constant pain, dementia, and coma. The methods of rank order, category scaling, time tradeoff, and standard gamble were adapted to quantify states worse than death. Cognitive burden was assessed using completion rates, interviewer assessments, respondents' self-reporting, and investigators' evaluations. For both respondent groups, all methods showed similar degrees of cognitive burden for those able to complete the tasks and were similar in their ability to identify and quantify preferences. The majority of nursing home residents, however, were unable to complete or comprehend the measurement tasks. Most respondents evaluated their current health and severe constant pain as better than death; dementia and coma were more often considered equal to or worse than death. These results indicate that respondents can and do evaluate some health states as worse than death. The authors recommend systematic inclusion of states worse than death to describe a more complete range of preference values and routine assessment of the cognitive burdens of assessment techniques to evaluate methodologies.

Impact of a procedure-specific do not resuscitate order form on documentation of do not resuscitate orders.

BACKGROUND: Serious problems exist with respect to documentation of do not resuscitate (DNR) orders. We studied the impact of a procedure-specific DNR order form on documentation of these orders. METHODS: We prospectively compared DNR chart documentation during a 3-month period before and after implementation of a procedure-specific DNR order form. RESULTS: The order form was used in 41 (93%) of 43 charts after its implementation. Documentation of attending physician agreement with the DNR order form increased from 30 of 34 charts in which the order form was used). The number of orders where it was uncertain whether at least one component of acute cardiopulmonary life support-related procedures was to be performed decreased from 30 (88%) of 34 charts to three (7%) of 43 charts. The order form had no measurable impact on documentation of DNR discussion. Only 25% of the charts had any discussion of the risks and benefits of CPR. CONCLUSIONS: A procedure-specific DNR order form can improve documentation of DNR decisions. The reduction of uncertainty in these orders about the use of specific procedures can prevent errors in patient care.

Physicians' attitudes toward tube feeding chronically ill nursing home patients.

OBJECTIVE: To determine attitudes of physicians toward the limitation of tube feeding in chronically ill nursing home patients and the influences of patient preferences and other patient and physician variables on these decisions. DESIGN: Questionnaire-based, mailed survey. Hypothetical case scenarios derived by fractional factorial design to determine the influences of patient and family preferences, age, life expectancy, physical and cognitive functioning; direct scaling to determine the influences of legal and cost considerations. PARTICIPANTS: Randomly selected national samples of American Geriatrics Society and American Medical Association members (n = 141, participation rate 41%). MAIN RESULTS: Nearly all physicians indicated they would withhold (95%) or withdraw (92%) tube feeding in at least one of the 16 scenarios studied. Physician decisions were most highly associated with patient preferences, followed by family preferences, life expectancy, and cognitive status (p less than 0.02 to less than 0.001). When patients and families agreed, physicians concurred in 87% to 95% of the decisions. However, when patients and families disagreed, physicians concurred with patients in only 48% to 55% of the decisions. Increasing physician concern regarding legal and cost considerations was significantly associated with significantly higher and lower likelihoods of tube feeding, respectively (p less than 0.05). CONCLUSIONS: These results suggest that the majority of study physicians are willing to limit tube feeding in nursing home patients under some circumstances. Patient preferences appear to be the most important factor in these decisions, but may not be honored, especially if the wishes of patients and their families are not in concurrence.

Effect of education on the mini-mental state examination as a screening test for dementia.

We studied whether Mini-Mental State Examination (MMSE) norms for detecting dementia in elderly outpatients vary according to educational attainment. Subjects were 109 elderly outpatients with Alzheimer's dementia and 100 non-demented outpatient controls. Receiver operating characteristics (ROC) of the MMSE were examined among three strata of educational attainment: middle school, high school, and college/graduate school. MMSE ROC curve areas were .95-.96 in the three educational strata. Assuming a dementia prevalence of 10%-30%, the most accurate lower limits of normal for MMSE scores and their attendant sensitivities and specificities were 21 for middle school (.82/.94), 23 for high school (.79/.97), and 24 for college/graduate school (.83/1.00) attainment. These norms accurately classified over 90% of subjects in all three educational strata. We conclude that education-specific norms optimize performance of the MMSE as a screening test for Alzheimer's dementia in elderly outpatients.

Quality of life in elderly, chronically ill outpatients.

Quality of life (QL) in elderly outpatients is poorly characterized. We interviewed 258 elderly outpatients from three health care settings to identify the attributes and events that affect self-assessment of QL. These outpatients rated their QL as acceptable, citing medical care, health, interpersonal relationships, financial status, and functional status as affecting their QL. Overall QL ratings were not strongly associated with objective indicators such as demographic characteristics and use of health care services. Subjective indicators, including patient perceptions of health, memory, and financial concerns, were correlated independently with global QL (sigma R2 = .35). We conclude that older, chronically ill patients generally consider their QL to be acceptable and affected by a variety of factors, including their perceptions of their emotional, socioeconomic, intellectual, and physical functioning. Furthermore, QL is poorly associated with objective indicators. Thus, in assessing the QL of elderly, chronically ill outpatients, physicians should elicit information regarding these perceptions.

Visual impairment and cognitive dysfunction in Alzheimer's disease.

OBJECTIVE: To determine whether impaired visual acuity is associated with dementia and cognitive dysfunction in older adults. DESIGN: Paired case-control comparisons of the relative frequencies of visual impairment in demented cases and nondemented controls. Cohort analyses of correlation between visual acuity and cognitive functioning in demented cases. SETTING: Internal medicine clinics at two academically affiliated medical centers. PARTICIPANTS: Eighty-seven consecutively selected patients greater than or equal to 65 years of age with mild-to-moderate, clinically diagnosed Alzheimer's disease (cases) and 87 nondemented controls matched to the cases by age, sex, and education. MEASUREMENTS AND MAIN RESULTS: The prevalence of visual impairment was higher in cases than in controls [unadjusted odds ratio for near-vision impairment = 2.7 (95% CI = 1.4, 5.2); unadjusted odds ratio for far-vision impairment = 2.1 (95% CI = 1.02, 4.3); odds ratios adjusted for family history of dementia, depression, number of medications, and hearing loss were 2.5 (95% CI = 1.1, 10.5) for near-vision impairment and 1.9 (95% CI = 0.8, 4.6) for far-vision impairment]. When further stratified by quartiles of visual acuity, no statistically significant "dose-response" relationship between vision impairment and dementia risk was observed. Among cases, the degree of visual impairment was significantly correlated with the severity of cognitive dysfunction for both near and far vision (adjusted ps less than 0.001). CONCLUSIONS: Visual impairment is associated with both an increased risk and an increased clinical severity of Alzheimer's disease, but the increased risk may not be consistent with a progressive dose-response relationship. Further studies are needed to determine whether visual impairment unmasks and exacerbates the symptoms of dementia or is a marker of disease severity.

Perceived quality of life and preferences for life-sustaining treatment in older adults.

We investigated whether perceived quality of life is associated with preferences for life-sustaining treatment for older adults. Participants included chronically ill, elderly outpatients (N = 258) and their primary physicians (N = 105). Patients and physicians were independently administered a questionnaire regarding patient quality of life and preferences for cardiopulmonary resuscitation and mechanical ventilation for the patient. Physicians rated patients' global quality of life, physical comfort, mobility, depression, anxiety, and family relationships significantly worse than did patients. Nearly all perceptions of patients' quality of life were significantly associated with physicians' perceptions, but not patients' treatment preferences. Patient-physician agreement on patient global quality of life was not significantly associated with agreement regarding treatment preferences. We conclude that primary physicians generally consider their older outpatients' quality of life to be worse than do the patients. Furthermore, physicians' estimations of patient quality of life are significantly associated with physicians' attitudes toward life-sustaining treatment for the patients. For the patients, however, perceived quality of life does not appear to be associated with their preferences for life-sustaining treatment.

Reliability of estimates of changes in mental status test performance in senile dementia of the Alzheimer type.

The concept of the reliability of a measure can also be applied to its change over time. In this study we consider the growth curve approach to estimating the reliability of change, in the context of cognitive status as measured by the Mini-Mental State Examination (MMSE) and the Blessed and Tomlinson Dementia Rating Scale (DRS) in patients with senile dementia of the Alzheimer type (SDAT). The reliability of the estimates of change is shown to depend primarily upon the length of time of observation, not the number of observations made. The estimated reliability coefficient for the change in MMSE (or DRS) at 6 months is 0.16 (or 0.08); at 2 years is 0.75 (or 0.57). The concept of signal-to-noise ratio is introduced to compare reliabilities in change scores.

Understanding of elderly patients' resuscitation preferences by physicians and nurses.

We compared the understanding by family physicians and nurses of their elderly outpatients' preferences for cardiopulmonary resuscitation and mechanical ventilation under 3 scenarios reflecting varying qualities of life. Physicians and nurses correctly predicted patients' treatment preferences in from 59% to 84% and 53% to 78% of cases, respectively, for the various decisions. For most decisions, neither physicians nor nurses were significantly more accurate in their predictions than expected by chance alone. Moreover, nurses and physicians did not significantly agree with one another in their predictions of patients' preferences for any of these decisions. These results suggest that while nurses' and physicians' perceptions of patients' preferences for life-sustaining treatment are not necessarily similar, neither nurses nor physicians systematically understand their elderly patients' resuscitation preferences.

Relationship of hearing impairment to dementia and cognitive dysfunction in older adults.

We conducted a case-control study in 100 cases who had Alzheimer's-type dementia and 100 age-, sex-, and education-matched, nondemented controls to evaluate the hypothesis that hearing impairment contributes to cognitive dysfunction in older adults. The prevalence of a hearing loss of 30 dB or greater was significantly higher in cases than in controls (odds ratio, 2.0; 95% confidence interval, 1.2 to 3.4), even when adjusted for potentially confounding variables. In addition, we observed a dose-response relationship in which greater hearing loss was associated with a higher adjusted relative odds of having dementia. Hearing loss was also significantly and independently correlated with the severity of cognitive dysfunction, as measured by the Mini-Mental State Examination, in nondemented as well as demented patients. These results demonstrate an association between hearing impairment and dementia and lend support to the hypothesis that hearing impairment contributes to cognitive dysfunction in older adults.

Validity and reliability of auditory screening tests in demented and non-demented older adults.

The validity and reliability of auditory screening tests were evaluated in 34 demented and 31 non-demented elderly outpatients. In reference to an audiometric gold standard (40-dB HL hearing loss in speech frequencies), 512-Hz and 1024-Hz tuning forks, finger rub, and whispered voice tests performed well (ROC curve areas = 0.82 to 0.94). Simultaneously high (greater than 0.80) sensitivities and specificities were achievable for all these tests in demented patients. In non-demented patients, however, only the whispered voice test achieved simultaneously high specificity and sensitivity. The most accurate rule for air conduction screening audiometry was the inability to hear greater than or equal to two of four 40-dB HL speech frequencies (sensitivity = 1.0, specificity = 0.75 in non-demented patients; sensitivity = 0.97, specificity = 0.74 in demented patients). Interobserver/test-retest reliability was generally high for tuning forks, finger rub, and whispered voice tests (range of intraclass correlation coefficients = 0.38 to 0.90), and was somewhat higher in demented than in non-demented patients. These results suggest that some of the simple, traditional methods of auditory screening may have considerable validity and reliability in demented and non-demented older adults.

Impact of mild to moderate hearing loss on mental status testing. Comparability of standard and written Mini-Mental State Examinations.

Mild to moderate hearing loss has been hypothesized to decrease performance on verbally-administered cognitive tests as an artifact of testing. To evaluate this hypothesis, we conducted a randomized trial of a written version of the Mini-Mental State Examination (MMSE), a cognitive screening instrument which, in its standard form, is primarily verbally administered. After baseline standard MMSE testing, 71 outpatients with Alzheimer's type dementia, 39 of whom (55%) had mild to moderate hearing deficits, and 32 of whom (45%) had normal hearing, were randomly assigned to receive either a written or standard MMSE. Hearing-impaired patients exhibited lower standard MMSE scores than hearing-unimpaired patients at baseline (P = .005). Contrary to expectation, however, on experimental administration, written MMSE scores were somewhat lower than standard MMSE scores in hearing-impaired patients (P not significant). Furthermore, written MMSE scores were slightly higher than standard MMSE scores in hearing-unimpaired patients (P not significant). These results suggest that the diminished cognitive performance associated with mild to moderate hearing loss is not necessarily an artifact of cognitive testing. In addition, these results provide preliminary evidence that a written MMSE is comparable to the standard MMSE and, thus, deserves further consideration for cognitive screening of profoundly hearing-impaired individuals.

Relationship of patient request fulfillment to compliance, glycemic control, and other health care outcomes in insulin-dependent diabetes.

Patients' perceptions of the extent to which their health care needs have been met may affect compliance with prescribed health behaviors and related health outcomes. The authors examined the relationships of "patient request fulfillment" to patient compliance, glycemic control, and several other health care outcomes in 51 adult outpatients with insulin-dependent diabetes mellitus. On average, patients retrospectively cited 4.5 long-term requests, of which over three-fourths were fulfilled. Fulfillment of these requests was significantly associated with patient satisfaction, perceived health status, fewer insulin reactions, and greater insulin injection time reliability (p less than 0.05), but not with several other measures of compliance. Higher patient request fulfillment at single visits was correlated, as hypothesized, with subsequent reduction in glycosylated hemoglobin, but this association was not statistically significant. These results suggest that patient request fulfillment is associated with several aspects of health behavior and health status in adults with insulin-dependent diabetes. Further studies are needed to confirm these observations and determine whether strategies to enhance patient request fulfillment can enhance health care outcomes.

Physicians' and spouses' predictions of elderly patients' resuscitation preferences.

"Substituted judgment," in which surrogate decisionmakers approximate patients' wishes, has been recommended for decision making for mentally incapacitated patients. To test understanding of patients' preferences by potential surrogate decisionmakers, we studied primary care physicians' (n = 105) and spouses' (n = 90) predictions of elderly outpatients' (n = 258) preferences for cardiopulmonary resuscitation (CPR) and CPR plus ventilator (CPR + V), assuming three baseline health states: current health, stroke, and chronic lung disease. Although more than three-quarters of physicians and spouses surveyed believed their predictions of patients' preferences were accurate, the accuracy of physicians' and spouses' predictions did not exceed that expected due to chance alone in 5 of 6, and 3 of 6 decisions, respectively. Physicians significantly underestimated patients' preferences for resuscitation in the stroke and chronic lung disease scenarios (p less than .01), and significantly overestimated them in the current health/CPR decision (p less than .05). Spouses overestimated patients' preferences for resuscitation in all decisions, significantly so in the three CPR + V decisions (p less than .05). These results suggest physicians and spouses often do not understand elderly outpatients' resuscitation preferences. Under these circumstances they are unlikely to provide accurate substituted judgments.

Quality of life in chronic diseases: perceptions of elderly patients.

Quality of life is an important consideration in medical decisions involving elderly patients and a clinical outcome measure of health care. Elderly outpatients (N = 126) with five common chronic diseases (arthritis, ischemic heart disease, chronic pulmonary disease, diabetes mellitus, and cancer) and their physicians were interviewed to better characterize patient quality of life. Patients generally perceived their quality of life to be slightly worse than "good, no major complaints" in each chronic disease. Physicians' ratings were generally worse than and only weakly associated with the patients' ratings of quality of life in each chronic disease. Significant independent correlates of patients' ratings of quality of life included the patients' perceptions of their health, interpersonal relationships, and finances. These results suggest that quality of life in elderly outpatients with chronic disease is a multidimensional construct involving health, as well as social and other factors. Physicians may misunderstand patients' perceptions of their quality of life.