Advance care planning tries to ensure that decision-making for decisionally incapacitated patients is patient-centered. This has particular relevance for end-of-life decisions. Although many people in the United States favor advance care planning, only a minority prepares advance directives. One impediment to clinician encouragement and involvement is not knowing how to discuss these issues. To help frame advance care planning discussions, we studied the interrelationships between treatment preferences and health state ratings of patients and well adults. The study population included a diverse sample of well adults and patients (n=342). Six treatment preferences were elicited in current health and two hypothetical states describing permanent coma and severe dementia. The six treatments were antibiotics, long-term hemodialysis, short-term mechanical ventilation, cardiopulmonary resuscitation (CPR), long-term jejunal feeding tube, and long-term mechanical ventilation. When participants declined noninvasive treatments, they usually declined more invasive treatments, and when they wanted to receive invasive treatments, they usually accepted less invasive ones. The data suggest an empirically derived, organizing sequence of treatments that represent increasing degrees of 'aggressiveness' that is influenced by invasiveness and treatment duration. CPR was in the mid-range of aggressiveness, and preferences for CPR were poor predictors of other treatment preferences. These results suggest that eliciting preferences for only CPR is not sufficient information to infer a patient's preferences for more invasive or long-term life-sustaining treatments. In addition, knowing that patients want treatment in their current health does not generalize well to wanting treatment in more impaired functional health states. Lastly, refusing treatment in severely impaired states of health, such as severe dementia or permanent coma, does not generalize well to refusing treatment in less impaired states of health.

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.

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.Objective: 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 ratings. 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.

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, skinfolds, 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 ≤ .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.

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.

Previous articleNext article No AccessInsights Pertaining to Patient Assessments of States Worse than DeathRobert A. Pearlman, Kevin C. Cain, Donald L. Patrick, Malka Appelbaum-Maizel, Helene E. Starks, Nancy S. Jecker, and Richard F. UhlmannRobert A. PearlmanSeattle Veterans Affairs Medical Center; University of Washington Search for more articles by this author , Kevin C. CainUniversity of Washington Search for more articles by this author , Donald L. PatrickUniversity of Washington Search for more articles by this author , Malka Appelbaum-MaizelSeattle Veterans Affairs Medical Center; University of WashingtonUniversity of WashingtonUniversity of WashingtonUniversity of WashingtonUniversity of WashingtonUniversity of Washington Search for more articles by this author , Helene E. StarksUniversity of Washington Search for more articles by this author , Nancy S. JeckerUniversity of Washington Search for more articles by this author , and Richard F. UhlmannUniversity of Washington Search for more articles by this author PDFPDF PLUS Add to favoritesDownload CitationTrack CitationsPermissionsReprints Share onFacebookTwitterLinkedInRedditEmail SectionsMoreDetailsFiguresReferencesCited by Volume 4, Number 1Spring 1993 Published on behalf of the MacLean Center for Clinical Medical Ethics Article DOIhttps://doi.org/10.1086/JCE199304106 Views: 2Total views on this site © 1993 The University of Chicago. All rights reserved.PDF download Crossref reports no articles citing this article.

Previous articleNext article No AccessSpousal Understanding of Patient Quality of Life: Implications for Surrogate DecisionsRobert A. Pearlman, Richard F. Uhlmann, and Nancy S. JeckerRobert A. PearlmanSeattle VA Medical Center and University of Washington School of Medicine Search for more articles by this author , Richard F. UhlmannUniversity of Washington School of Medicine Search for more articles by this author , and Nancy S. JeckerUniversity of Washington Search for more articles by this author PDFPDF PLUS Add to favoritesDownload CitationTrack CitationsPermissionsReprints Share onFacebookTwitterLinkedInRedditEmail SectionsMoreDetailsFiguresReferencesCited by Volume 3, Number 2Summer 1992 Published on behalf of the MacLean Center for Clinical Medical Ethics Article DOIhttps://doi.org/10.1086/JCE199203207 Citations: 3Citations are reported from Crossref © 1992 The University of Chicago. All rights reserved.PDF download Crossref reports the following articles citing this article: Jeffrey T. Berger and S. Deborah Majerovitz Do Elderly Persons’ Concerns for Family Burden Influence their Preferences for Future Participation in Dementia Research?, The Journal of Clinical Ethics 16, no.22 (Dec 2022): 108–115.https://doi.org/10.1086/JCE200516202 Jane Chambers-Evans and Franco A. Carnevale Dawning of Awareness: The Experience of Surrogate Decision Making at the End of Life, The Journal of Clinical Ethics 16, no.11 (Dec 2022): 28–45.https://doi.org/10.1086/JCE200516104 by Dan W. Brock A Critique of Three Objections to Physician‐Assisted Suicide Brock, Ethics 109, no.33 (Jul 2015): 519–547.https://doi.org/10.1086/233920

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 attendent 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.

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.

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.

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.

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.

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.

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.