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N S Wenger

Publications and source records attributed to N S Wenger.

At least 19 recordsLinked to original sources

Life-sustaining treatment decisions for nursing home residents: who discusses, who decides and what is decided?

OBJECTIVE: To evaluate whether nursing home residents and their families reported discussions about life-sustaining treatment with their physicians, the relationship between such discussions and orders to limit therapy, and predictors of physician-patient communication about life-sustaining treatment. DESIGN: Cross-sectional interviews and retrospective chart abstraction. SETTING: Three regions: West Coast, New England, Western. SAMPLE: A total of 413 nursing home residents, 363 family/surrogate interviews, and 192 resident interviews. MAIN OUTCOME MEASURES: Measured were (1) physician-resident communication about life-sustaining treatment and (2) presence of an advance directive or do not resuscitate (DNR) order in resident's chart. RESULTS: Seventy-four percent of residents had DNR orders, and 32% had advance directives; only 29% of residents reported discussions about life-sustaining treatment. Of residents with DNR orders who could have participated in discussions about life-sustaining treatment, nearly half reported they had not discussed CPR with their caregivers. Older age, longer duration of time living in nursing home, location in a New England nursing home, physician-family member discussion, and the presence of an advance directive in the medical chart were positively associated with having DNR orders. Physician-resident discussion was not associated with having a DNR order. For the subsample of interviewed residents, age and a diagnosis of cognitive impairment were negatively associated with a physician-resident discussion about life-sustaining treatment, whereas the likelihood of having a discussion increased with increasing numbers of medical diagnoses. CONCLUSIONS: Chart orders to limit therapy are common, but physician-resident discussions about life-sustaining treatments are not. Far more family members than residents report such discussions with the resident's physicians.

Adult

Outcomes of acute exacerbation of severe congestive heart failure: quality of life, resource use, and survival. SUPPORT Investigators. The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments.

BACKGROUND: Congestive heart failure (CHF) is a common disease with high health care costs and high mortality rates. Knowledge of the health-related quality of life outcomes of CHF may guide decision making and be useful in assessing new therapies for this population. METHODS: A prospective cohort study was conducted involving 1390 adult patients hospitalized with an acute exacerbation of severe CHF (New York Heart Association class III-IV). Demographic data and health-related quality of life were determined by interview; physiologic status and cost and intensity of care were determined from hospital charts. RESULTS: The median (25th, 75th percentiles) age of patients was 68.0 (58.2, 76.9) years; 61.7% were male. Survival was 93.4% at discharge from the index hospitalization, 72.9% at 180 days, and 61.5% at 1 year. Of patients interviewed at 180 days, the median health rating on a scale of 0 to 100 (0 indicates death; 100, excellent health) was 60 (interquartile range, 50-80), and 59.7% were independent in their activities of daily living. Overall quality of life was reported to be good, very good, or excellent in 58.2% at 180 days. Patients with worse functional capacity were more likely to die. Health perceptions among the patients with available interview data improved at 60 and 180 days after acute exacerbation of severe CHF. CONCLUSIONS: Patients hospitalized for acute exacerbation of severe CHF have a generally poor 6-month survival, but survivors retain relatively good functional status and have good health perceptions. Furthermore, health perceptions improve after the acute exacerbation.

Acute Disease

Depressed mood and survival in seriously ill hospitalized adults. The SUPPORT Investigators.

OBJECTIVES: To assess the relationship among depressed mood, physical functioning, and severity of illness and to determine the relationship between depressed mood and survival time, controlling for severity of illness, baseline functioning, and characteristics of patients. METHODS: Prospective cohort study of data for 3529 seriously ill hospitalized adults who received care at 5 tertiary care teaching hospitals and who completed a depressed mood assessment 7 to 11 days after admission to the study. The Profile of Mood States depression subscale was used to assess depressed mood. A stratified Cox proportional hazards model was used to assess the independent effect of depressed mood on survival time, adjusting for demographic characteristics of patients and health status. RESULTS: Greater magnitudes of depressed mood were associated with worse levels of physical functioning (r = 0.151; P < .001) and more severity of illness. Depressed mood was associated with reduced survival time after adjusting for patient demographics and health status (hazards ratio, 1.134; 95% confidence interval, 1.071-1.200; P < or = .001). CONCLUSION: Seriously ill patients should be assessed for the presence of depressed mood even if they have not been given a diagnosis of depression. Further study is needed to determine whether interventions aimed at relieving depressed mood may improve prognosis.

Affect

Evaluation of the research norms of scientists and administrators responsible for academic research integrity.

CONTEXT: The professional integrity of scientists is important to society as a whole and particularly to disciplines such as medicine that depend heavily on scientific advances for their progress. OBJECTIVE: To characterize the professional norms of active scientists and compare them with those of individuals with institutional responsibility for the conduct of research. DESIGN: A mailed survey consisting of 12 scenarios in 4 domains of research ethics. Respondents were asked whether an act was unethical and, if so, the degree to which they considered it unethical and to select responses and punishments for the act. PARTICIPANTS: A total of 924 National Science Foundation research grantees in 1993 or 1994 in molecular or cellular biology and 140 representatives from the researchers' institutions to the US Department of Health and Human Services Office of Research Integrity. MAIN OUTCOME MEASURES: Percentage of respondents considering an act unethical and the mean malfeasance rating on a scale of 1 to 10. RESULTS: A total of 606 research grantees and 91 institutional representatives responded to the survey (response rate of 69% of those who could be contacted). Respondents reported a hierarchy of unethical research behaviors. The mean malfeasance rating was unrelated to the characteristics of the investigator performing the hypothetical act or to its consequences. Fabrication, falsification, and plagiarism received malfeasance ratings higher than 8.6, and virtually all thought they were unethical. Deliberately misleading statements about a paper or failure to give proper attribution received ratings between 7 and 8. Sloppiness, oversights, conflicts of interest, and failure to share were less serious still, receiving malfeasance ratings between 5 and 6. Institutional representatives proposed more and different interventions and punishments than the scientists. CONCLUSIONS: Surveyed scientists and institutional representatives had strong and similar norms of professional behavior, but differed in their approaches to an unethical act.

Biomedical Research

Patient empowerment and feedback did not decrease pain in seriously ill hospitalized adults.

We tested a nurse clinician-mediated intervention to relieve pain in a group of seriously ill hospitalized adults using a randomized controlled trial at five tertiary care academic centers in the US. The study included 4804 patients admitted between January 1992 and January 1994 with one or more of nine high mortality diagnoses; 2652 were allocated to the intervention and 2152 to usual care. Specially-trained nurse clinicians assessed patients' pain, educated them and their families about pain control, empowered patients to expect pain relief, informed patients' nurses and physicians about level of pain and suggested or used other pain management resources. Patients' pain was determined from hospital interviews with patients and surrogates. Pain 2 and 6 months later or after death and satisfaction with its control at all time periods were also assessed. All analyses were adjusted for baseline risk of being in pain and propensity to be in the intervention group. Overall, 50.9% of patients reported some pain. After adjustment for other variables associated with pain, comparing the intervention to the control group, there was not a statistically significant difference in level of pain (OR for higher levels of pain 1.15; CI 1.00-1.32) or satisfaction with control of pain during the hospitalization (OR for higher levels of pain 1.12; CI 0.91-1.39), 2 or 6 months after discharge, or during the last 3 days of life. A multifaceted intervention using information, empowerment, advocacy, counseling and feedback was ineffective in ameliorating pain in seriously ill patients. Control of pain in these patients remains an important problem. More intensive pain treatment strategies addressing the needs of seriously ill hospitalized adults must be evaluated.

Aged

Is access to medical care associated with receipt of HIV testing and counselling?

Lack of timely HIV testing leads to missed prevention opportunities and poor prevention counselling may be related to further disease spread. We examined the association of self-reported access to medical care with receiving HIV testing and preventive counselling services among a sample of patients with HIV disease prior to hospitalization. We conducted a cross-sectional interview of 217 Los Angeles patients hospitalized with HIV-related illness between 1992 and 1993 and abstracted clinical data from the medical record. Eighty-four per cent of patients received HIV testing prior to hospitalization, but only 33% received preventive counselling services. Only 48% of all patients rated outpatient medical care as somewhat or very easy to obtain. Controlling for severity of illness, better access to outpatient medical care (OR = 1.48; 95% CI = 1.02-2.15), having a regular source of care (OR = 3.40; 95% CI = 1.29-8.97) and non-homosexual mode of HIV transmission (OR = 0.31; 0.12-0.83) were associated with receiving HIV testing services prior to hospitalization. Having a regular source of care (OR = 3.55; 95% CI = 1.37-9.22), being VA (Veterans' Administration) insured (OR = 6.16; 1.46-26.05), older age (OR = 0.95; 95% CI = 0.90-0.99) and having a CD4 count between 101-200 (OR = 0.19; 95% CI = 0.06-0.63) were associated with receiving HIV counselling. Limited self-reported access to medical care is associated with fewer patients receiving HIV testing and counselling. Improving timeliness of HIV testing may require removing the barriers to medical care.

Adolescent

Punishment for unethical behavior in the conduct of research.

PURPOSE: To investigate the perceptions of scientists and institutional representatives (IRs) to the National Institutes of Health's Office of Research Integrity concerning appropriate punishment for unethical research behavior. METHOD: In 1994-95, 606 scientists and 91 IRs rated the ethical behaviors of and suggested appropriate punishments for protagonists in randomly generated scenarios describing scientific research behaviors. The authors evaluated the relationships of the suggested punishments to the protagonists' behaviors and characteristics, and compared recommendations of the scientists and IRs. RESULTS: The respondents suggested punishments for 80% of the scenarios that were rated unethical. Punishments were more often prescribed for behaviors rated more unethical and for repeat offenders. The type of punishment was related to the protagonist's academic status and the nature of the unethical behavior. IRs proposed more and different punishments than did scientists. CONCLUSION: Scientists and IRs proposed that most unethical research behaviors be punished. The decision to punish depended on the unethical level of the behavior. The type of punishment depended on the aims: correcting the wrong, rehabilitation, or sanction. Variation in the respondents' selections of punishments and the IRs' greater propensity to punish suggest that scientists committing similar ethical violations may receive different punishments. Explicit consideration of which punishment is merited under what circumstances should be undertaken by the scientific community.

Biomedical Research

An assessment of orthopaedic surgeons' knowledge of medical ethics.

We developed a survey instrument to evaluate knowledge of ethical issues among orthopaedic surgeons and to assess their ability to handle ethical dilemmas. The twenty-six-item survey evaluates seven areas of medical practice: confidentiality, informed consent, truth-telling, the physician-patient relationship, economic aspects of care, end-of-life decision-making, and the approach to an incompetent colleague. It was administered to 117 attending orthopaedic surgeons and residents in two orthopaedic surgery training programs. One hundred and two orthopaedic surgeons (87 per cent) completed the survey. Overall, they correctly answered a mean of nineteen (73 per cent) of the twenty-six questions. The respondents appropriately handled questions involving economic aspects, truth-telling, confidentiality, and an incompetent colleague. However, there was poorer understanding of proper ethical conduct with regard to informed consent (58 per cent of the responses were correct), the physician-patient relationship (72 per cent of the responses were correct), and end-of-life decision-making (78 per cent of the responses were correct). No significant differences were found, with the numbers available, in overall performance according to site, attending compared with resident status, age, gender, or whether the physician had had training in ethics. Economic, social, and professional forces have increased the medical ethical issues facing orthopaedic surgeons. Medical ethics now must be taught in training programs in orthopaedic surgery. Our survey of two orthopaedic surgery training programs demonstrated that orthopaedic surgeons approach most medical ethical problems appropriately. However, improvement is needed in selected areas.

Adult

Teaching medical ethics to orthopaedic surgery residents.

Orthopaedic surgery residents will be faced with a variety of ethical issues when they enter clinical practice. A previous survey suggested that they lack knowledge about how to approach several types of medical ethics dilemmas. We developed a medical ethics curriculum for orthopaedic surgery residents and presented it over a one-year period to the residents in one training program. The effect of the educational intervention on the residents' knowledge of medical ethics and their ability to handle hypothetical situations was measured by comparing their responses to a questionnaire, administered before and after the intervention, with those of residents in a training program in which the intervention was not provided. The twenty-five residents at the site of the educational intervention had a mean improvement of 0.10 in the overall score, from a mean score of 0.71 on the baseline survey to a mean score of 0.81 on the follow-up survey. This improvement was significantly greater than the mean improvement of 0.02 for the thirty residents at the control site, who had a mean score of 0.72 on the baseline survey and a mean score of 0.74 on the follow-up survey (p = 0.002). Six residents who participated in the medical ethics curriculum rated it as very useful; seventeen, as somewhat useful; one, as slightly useful; and one, as not at all useful. A medical ethics curriculum can increase orthopaedic residents' knowledge of medical ethics. Whether this curriculum also will lead to behavioral changes requires additional evaluation.

California

Patient preferences for communication with physicians about end-of-life decisions. SUPPORT Investigators. Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment.

BACKGROUND: Physicians are frequently unaware of patient preferences for end-of-life care. Identifying and exploring barriers to patient-physician communication about end-of-life issues may help guide physicians and their patients toward more effective discussions. OBJECTIVE: To examine correlates and associated outcomes of patient communication and patient preferences for communication with physicians about cardiopulmonary resuscitation and prolonged mechanical ventilation. DESIGN: Prospective cohort study. SETTING: Five tertiary care hospitals. PATIENTS: 1832 (85%) of 2162 eligible patients completed interviews. MEASUREMENTS: Surveys of patient characteristics and preferences for end-of-life care; perceptions of prognosis, decision making, and quality of life; and patient preferences for communication with physicians about end-of-life decisions. RESULTS: Fewer than one fourth (23%) of seriously ill patients had discussed preferences for cardiopulmonary resuscitation with their physicians. Of patients who had not discussed their preferences for resuscitation, 58% were not interested in doing so. Of patients who had not discussed and did not want to discuss their preferences, 25% did not want resuscitation. In multivariable analyses, patient factors independently associated with not wanting to discuss preferences for cardiopulmonary resuscitation included being of an ethnicity other than black (adjusted odds ratio [OR], 1.48 [95% CI, 1.10 to 1.99), not having an advance directive (OR, 1.35 [CI, 1.04 to 1.76]), estimating an excellent prognosis (OR, 1.72 [CI, 1.32 to 2.59]), reporting fair to excellent quality of life (OR, 1.36 [CI, 1.05 to 1.76]), and not desiring active involvement in medical decisions (OR, 1.33 [CI, 1.07 to 1.65]). Factors independently associated with wanting to discuss preferences for resuscitation but not doing so included being black (OR, 1.53 [CI, 1.11 to 2.11]) and being younger (OR, 1.14 per 10-year interval younger [CI, 1.04 to 1.25]). CONCLUSIONS: Among seriously ill hospitalized adults, communication about preferences for cardiopulmonary resuscitation is uncommon. A majority of patients who have not discussed preferences for end-of-life care do not want to do so. For patients who do not want to discuss their preferences, as well as patients with an unmet need for such discussions, failure to discuss preferences for cardiopulmonary resuscitation and mechanical ventilation may result in unwanted interventions.

Adult

Functional status among survivors of in-hospital cardiopulmonary resuscitation. SUPPORT Investigators Study to Understand Progress and Preferences for Outcomes and Risks of Treatment.

OBJECTIVES: To describe functional outcomes of seriously III patients who survived 2 months after in-hospital cardiopulmonary resuscitation (CPR) and to identify patient and clinical characteristics associated with worse functional status after CPR. METHODS: Multicenter prospective observational analysis of 162 seriously ill hospitalized patients who survived 2 months after CPR. Analysis of clinical characteristics associated with worse functional outcome. RESULTS: Among 162 survivors of in-hospital CPR, 56% had the same or improved function and 44% had worse function at 2 months compared with functional status before CPR. Patients with worse function deteriorated by a mean of 3.9 activities of daily living and were less likely to survive to hospital discharge (P < .001) or to 6 months after study entry (P < .001). Worse functional outcome was associated with greater age and longer hospital stay before CPR. CONCLUSIONS: More than half of CPR survivors had preserved functional status 2 months after CPR. However, patients with worse function are profoundly disabled. In anticipation of possible severe disability after CPR, preferences for care in such health states should be discussed with patients before the need for CPR, particularly among older patients and those with long hospital stays.

Age Factors

Pain during hospitalization is associated with continued pain six months later in survivors of serious illness. The SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.

PURPOSE: To determine the level of pain reported by survivors of serious illness 2 and 6 months after study enrollment and to identify variables associated with later pain. PATIENTS AND METHODS: Observational cohort study of patients with interviews during hospitalization (5,652) and 2 (3,782) and 6 (2,984) months later admitted between June 1989 and January 1994 with 1 or more of 9 high mortality diagnoses admitted to 5 tertiary care academic centers in the United States. Patients' level of pain during the hospitalization and 2 and 6 months later was determined from interviews with patients and surrogates (most often family members). Separate ordinal logistic regressions were constructed with level of pain at months 2 or 6 as the dependent variable and 22 demographic, psychological, chronic, and acute illness measures at the time of hospitalization as independent variables. RESULTS: Of patients reporting level 4 (moderately severe pain occurring most of the time or extremely severe pain occurring half of the time) or 5 (moderately severe pain occurring most or all of the time or extremely severe pain occurring at least half of the time) pain to 5 during hospital interviews, 39.5% and 39.7% reported level 4 or 5 pain 2 and 6 months later, respectively. Level of hospital pain was the variable most strongly associated with later pain. Compared with patients with level 1 hospital pain, those with level 2 (not at all severe pain or moderate, occasional) had a 2.91 (95% confidence interval [CI] 2.50, 3.37) and 1.75 (CI 1.48, 2.07) times greater adjusted odds of increased levels of pain 2 and 6 months later, respectively. Compared with patients with level 1 hospital pain, those with level 5 pain had a 9.20 (CI 7.27, 11.65) and 4.40 (CI 3.39, 5.71) times greater adjusted odds of increased levels of pain 2 and 6 months later, respectively. Age, number of dependencies in activities of daily living, depression, and type of comorbid illnesses were also independently associated with level of pain both 2 and 6 months later. CONCLUSION: Survivors of the serious and common illnesses that we studied have a high level of pain during hospitalization and up to 6 months after hospitalization. Level of hospital pain was most strongly associated with later pain. Better pain control both during hospitalization and after discharge should be given a high priority. Pain during hospitalization should trigger future inquiries about pain and its treatment.

Adult

The relationship of nausea and dyspnea to pain in seriously ill patients.

OBJECTIVE: To describe the hospital symptom experience of seriously ill patients with common illnesses. To assess the independent association of nausea and dyspnea to level of pain. DESIGN: Cross-sectional study. SETTING: Five tertiary care academic centers in the US. PARTICIPANTS: 1556 patients admitted between June 1989 and June 1991 in SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) who answered questions concerning frequency and severity of pain, nausea and dyspnea, and the depression and anxiety subscales of the Profile of Mood States. METHODS: Seriously ill patients were interviewed a median of 8 days after hospitalization concerning the frequency and severity of their pain, nausea and dyspnea. Frequencies of symptoms and symptom combinations were tabulated. Ordinal logistic regression was used to test the independent association of level of pain with nausea and dyspnea. The analysis was adjusted for 22 additional demographic, psychological, chronic and acute illness measures. RESULTS: At least some level of anxious mood was reported by 85.2% of patients, depressed mood by 72.3% of patients, pain by 51.2% of patients, dyspnea by 48.6% of patients and nausea by 23.9% of patients. At least some degree of one of the five symptoms was reported by 94.2% of patients. Multivariable analysis controlling for demographic, psychological, and chronic and acute illness variables revealed that nausea and dyspnea were independently related to level of pain. Compared to patients without these symptoms, patients who reported mild (level 2), moderate (level 3), more severe (level 4) and very severe (level 5) nausea had odds ratios (OR) for higher levels of pain of 1.62 (1.24, 2.12) (95% confidence interval), 2.36 (1.39, 4.00), 2.57 (1.29, 5.12) and 2.22 (1.08, 4.53), respectively. Compared to patients without these symptoms, patients who reported mild (level 2), moderate (level 3), more severe (level 4) and very severe (level 5) dyspnea had odds ratios (OR) for higher levels of pain of 1.49 (1.17, 1.90), 1.92 (1.21, 3.04), 2.73 (1.83, 4.07) and 1.95 (1.39, 2.73), respectively. CONCLUSIONS: Seriously ill patients have a high symptom burden. Patients who have nausea and dyspnea experience more pain than patients without these symptoms, even after adjustment for depression, anxiety, disease type, disease severity and demographic and psychological measures. The causal association between these symptoms and pain remains to be determined. Though pain may cause dyspnea and nausea, the intriguing possibility remains that, in addition to relieving suffering, treating dyspnea and nausea may relieve pain.

Affect

Relationship of body mass index to subsequent mortality among seriously ill hospitalized patients. SUPPORT Investigators. The Study to Understand Prognoses and Preferences for Outcome and Risks of Treatments.

OBJECTIVE: To determine if body mass Index (BMI = weight [kg]/height [m]2), predictive of mortality in longitudinal epidemiologic studies, was also predictive of mortality in a sample of seriously ill hospitalized subjects. DESIGN: Prospective, multicenter study. SETTING: Five tertiary care medical centers in the United States. PATIENTS: Patients > or = 18 yrs of age who had one of nine illnesses of sufficient severity to anticipate a 6-month mortality rate of 50% were enrolled at five participating sites in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Patients were asked their current height and weight as part of the demographic data. Stratifying body mass index by percentile rank (< or = 15, 15 to 85, and > or = 85th percentiles), risk ratios for mortality were calculated by Cox Proportional Hazards using the 15th to 85th percentile of body mass index as the reference group while controlling for multiple variables such as prior weight loss, albumin, and Acute Physiology Score. A body mass index in the < or = 15th percentile was associated with an excess risk of mortality (risk ratio = 1.23; p < .001) within 6 months. High body mass index (> or = 85th percentile) was not significantly related to risk of mortality. CONCLUSIONS: Body mass index, a simple anthropometric measure of nutrition employed in community epidemiologic studies, has now been demonstrated to be a predictor of mortality in an acutely ill population of adults at five different tertiary centers. Even when controlling for multiple disease states and physiologic variables and removing from the analysis all patients with significant prior weight loss, a body mass index below the 15th percentile remained a significant and independent predictor of mortality. Examination of patient vs. proxy data did not change the results. Future studies examining variables predictive of mortality should include body mass index, even in acutely ill populations with a poor probability of survival.

APACHE

Changes over time in the use of do not resuscitate orders and the outcomes of patients receiving them.

OBJECTIVES: Do not resuscitate (DNR) orders are increasingly common, though there has been little evaluation of their changing use. The authors contrasted the use and outcomes of DNR orders for nationally representative samples of Medicare patients hospitalized with specific diagnoses in 1981 to 1982 and 1985 to 1986. METHODS: Using ordinary least squares regression to adjust for patient and hospital characteristics, the authors compared use, timing and predictors of DNR orders, and survival to hospital discharge of patients with DNR orders between the two time periods. RESULTS: After adjustment for sickness at admission and for patient and hospital factors, more patients received DNR orders in 1985 to 1986 than in 1981 to 1982 (13% versus 10%, P < 0.001), with most of the increase among patients with the greatest sickness at admission. Disparity in DNR order use by age, diagnosis, functional status, preadmission residence, and gender found in 1981 to 1982 was still present in 1985 to 1986. DNR orders were written earlier in hospitalization during the latter time period. Patients with DNR orders were more likely to survive to hospital discharge in 1985 to 1986 than in 1981 to 1982 (44% versus 36%, P = 0.001), but their 30-day survival did not differ. CONCLUSIONS: Although use increased, disparities in DNR order assignment persisted in these 1980s data. Examination is needed into whether these differences persist and whether they reflect patient preferences. Systems should be developed to preserve and review the preferences of the increasing number of patients discharged after in-hospital DNR orders.

Aged

Surrogate and physician understanding of patients' preferences for living permanently in a nursing home.

OBJECTIVE: To evaluate patients' willingness to live permanently in a nursing home and surrogate and physician understanding of that preference. DESIGN: Evaluation of cross-sectional interview data from a cohort study. SETTING: Five academic medical centers. PARTICIPANTS: Seriously ill hospitalized adults enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). MEASUREMENTS: Patients' willingness to live permanently in a nursing home was measured on a 5-point scale ranging from "very willing" to "rather die." Ordinal logistic regression was used to identify patient demographic and clinical characteristics associated with this preference. Surrogate and physician perceptions of patient preferences were compared with patients' responses, and factors associated independently with surrogate and physician understanding of patient preference were identified. RESULTS: Of 9105 patients, 3262 (36%) provided responses to the study question: 7% were "very willing" to live permanently in a nursing home, 19% "somewhat willing," 11% "somewhat unwilling," 26% "very unwilling," and 30% would "rather die." Older age was associated independently with less willingness to live permanently in a nursing home (odds ratio [OR] = .90 per decade; 95% confidence interval [CI]: 0.85, 0.96). Patients with more education (OR = 1.03 per year; 95% CI: 1.00, 1.05) and more disabilities (OR = 1.05 per disability; 95% CI: 1.01, 1.09), and black patients (OR = 1.46 compared with white patients; 95% CI: 1.20, 1.76) were more willing to live in a nursing home. Surrogates understood 61% of patients' nursing home preferences but identified only 35% of patients who were willing to live permanently in a nursing home. Physicians identified 18% of patients willing to live permanently in a nursing home. CONCLUSION: Patient attitudes about living permanently in a nursing home can be elicited, cannot be reliably predicted from demographic and clinical variables, and are frequently misunderstood by surrogates and physicians. Elicitation of patient preferences regarding permanent nursing home placement should be explored before patients become unable to participate in decision making in order to enhance the concordance of patient preference with the way they spend the end of their lives.

Aged