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J M Teno

Publications and source records attributed to J M Teno.

At least 37 records · Page 2Linked to original sources

Older age, aggressiveness of care, and survival for seriously ill, hospitalized adults. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.

BACKGROUND: Older age is associated with less aggressive treatment and higher short-term mortality due to serious illness. It is not known whether less aggressive care contributes to this survival disadvantage in elderly persons. OBJECTIVE: To determine the effect of age on short-term survival, independent of baseline patient characteristics and aggressiveness of care. DESIGN: Secondary analysis of data from a prospective cohort study. SETTING: Five academic medical centers participating in SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments). PATIENTS: 9105 adults hospitalized with one of nine serious illnesses associated with an average 6-month mortality rate of 50%. MEASUREMENTS: Survival through 180 days of follow-up. In Cox proportional hazards modeling, adjustment was made for patient sex; ethnicity; income; baseline physical function; severity of illness; intensity of hospital resource use; presence of do-not-resuscitate orders on study day 1; and presence and timing of decisions to withhold transfer to the intensive care unit, major surgery, dialysis, blood transfusion, vasopressors, and tube feeding. RESULTS: The mean (+/- SD) patient age was 63 +/- 16 years, 44% of patients were female, and 16% were black. Overall survival to 6 months was 53%. In analyses that adjusted for sex, ethnicity, income, baseline functional status, severity of illness, and aggressiveness of care, each additional year of age increased the hazard of death by 1.0% (hazard ratio, 1.010 [95% CI, 1.007 to 1.013]) for patients 18 to 70 years of age and by 2.0% (hazard ratio, 1.020 [CI, 1.013 to 1.026]) for patients older than 70 years of age. Adjusted estimates of age-specific 6-month mortality rates were 44% for 55-year-old patients, 48% for 65-year-old patients, 53% for 75-year-old patients, and 60% for 85-year-old patients. Similar results were obtained in analyses that did not adjust for aggressiveness of care. Acute physiology and diagnosis had much larger relative contributions to prognosis than age. CONCLUSIONS: We found a modest independent association between patient age and short-term survival of serious illness. This age effect was not explained by the current practice of providing less aggressive care to elderly patients.

Activities of Daily Living↗

Patient age and decisions to withhold life-sustaining treatments from seriously ill, hospitalized adults. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment.

BACKGROUND: Patient age may influence decisions to withhold life-sustaining treatments, independent of patients' preferences for or ability to benefit from such treatments. Controversy exists about the appropriateness of using age as a criterion for making treatment decisions. OBJECTIVE: To determine the effect of age on decisions to withhold life-sustaining therapies. DESIGN: Prospective cohort study. SETTING: Five medical centers participating in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). PATIENTS: 9105 hospitalized adults who had one of nine illnesses associated with an average 6-month mortality rate of 50%. MEASUREMENTS: Outcomes were the presence and timing of decisions to withhold ventilator support, surgery, and dialysis. Adjustment was made for sociodemographic characteristics, prognoses, baseline function, patients' preferences for life-extending care, and physicians' understanding of patients' preferences for life-extending care. RESULTS: The median patient age was 63 years; 44% of patients were women, and 53% survived to 180 days. In adjusted analyses, older age was associated with higher rates of withholding each of the three life-sustaining treatments studied. For ventilator support, the rate of decisions to withhold therapy increased 15% with each decade of age (hazard ratio, 1.15 [95% CI, 1.12 to 1.19]); for surgery, the increase per decade was 19% (hazard ratio, 1.19 [CI, 1.12 to 1.27]); and for dialysis, the increase per decade was 12% (hazard ratio, 1.12 [CI, 1.06 to 1.19]). Physicians underestimated older patients' preferences for life-extending care; adjustment for this underestimation resulted in an attenuation of the association between age and decisions to withhold treatments. CONCLUSION: Even after adjustment for differences in patients' prognoses and preferences, older age was associated with higher rates of decisions to withhold ventilator support, surgery, and dialysis.

Activities of Daily Living↗

For every numerator, you need a denominator: a simple statement but key to measuring the quality of care of the "dying".

A mathematical rate is composed of a numerator, denominator, and time period of observation. Deciding who is in the denominator is a key, yet difficult task given the blurred boundaries of chronic illness, in examining the quality of care for dying patients. We propose two potential solutions. First, one could prospectively define the outcome state of "living with life-threatening" illness, where there is life expectancy of 1 or 2 years. Second, retrospective interviews could be used with family members or other loved ones about their perceptions of the quality of care in the last weeks of life. Improving the quality of care for dying patients and their families requires attention to this matter.

Humans↗

Methodological challenges for measuring quality of care at the end of life.

Measurement is a fundamental step in improving the quality of care for dying patients and their families. Yet, there are important methodological challenges to be addressed. In conducting surveys about the patient and family experience, research is needed regarding the relative merits and cost-effectiveness of prospective or retrospective surveys after the patient's death. Proxies are an important source of information given that the majority of patients can not be interviewed in the last week of life. Research is needed to understand who is best able to serve as a proxy and the validity of their reports. The cost-effectiveness and comparability of alternative data collection strategies need to be examined. These and other important issues need to be addressed in designing reliable, valid, and clinically manageable measures.

Humans↗

Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness.

Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research agenda for the development of a Tool Kit of Instruments to Measure End of Life Care (TIME). Instruments for inclusion in the eventual "Tool Kit" should be patient-focused and family-centered, clinically meaningful, administratively manageable, and psychometrically sound. Prioritizing domains to measure quality of care should be based on consumer input and synergistic with ongoing efforts to formulate guidelines and standards of care. For this vulnerable population, research is needed regarding the timing and sources of data collection. In order to achieve maximal benefit, ultimately measurement tools must be incorporated into existing measurement systems and consideration be given to generating informative reports which leads to institutional action to improve the quality of care.

Humans↗

Putting patient and family voice back into measuring quality of care for the dying.

Quality of care and quality of life change substantially for those with a serious chronic illness and nearing the end of their lives. As one dies, life takes on new shape-values change and things once ignored become more important. Existing quality of care measures do not attend to the changes in priorities or to dimensions that acquire new significance (e.g., Spirituality and transcendence). An important impediment to addressing the inadequacies in the evidence base for palliative care, improving shortcomings of care, and holding institutions or health care systems accountable for the quality of care is the lack of valid and reliable measurement tools. In this article, an overview is presented of an ongoing research effort to develop measurement tools which will utilize the patient and family perspective to measure the quality of care.

Decision Making, Organizational↗

Resuscitation preferences among patients with severe congestive heart failure: results from the SUPPORT project. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.

BACKGROUND: We sought to describe the resuscitation preferences of patients hospitalized with an exacerbation of severe congestive heart failure, perceptions of those preferences by their physicians, and the stability of the preferences. METHODS AND RESULTS: Of 936 patients in this study, 215 (23%) explicitly stated that they did not want to be resuscitated. Significant correlates of not wanting to be resuscitated included older age, perception of a worse prognosis, poorer functional status, and higher income. The physician's perception of the patient's preference disagreed with the patient's actual preference in 24% of the cases overall. Only 25% of the patients reported discussing resuscitation preferences with their physician, but discussion of preferences was not significantly associated with higher agreement between the patient and physician. Of the 600 patients who responded to the resuscitation question again 2 months later, 19% had changed their preferences, including 14% of those who initially wanted resuscitation (69 of 480) and 40% of those who initially did not (48 of 120). The physician's perception of the patient's hospital resuscitation preference was correct for 84% of patients who had a stable preference and 68% of those who did not. CONCLUSIONS: Almost one quarter of patients hospitalized with severe heart failure expressed a preference not to be resuscitated. The physician's perception of the patient's preference was not accurate in about one quarter of the cases. but communication was not associated with greater agreement between the patient and the physician. A substantial proportion of patients who did not want to be resuscitated changed their minds within 2 months of discharge.

Adult↗

Death in the hospital.

OBJECTIVE: To examine symptoms and treatments among hospitalized adults in the last 2 days of life. METHODS: Review of 72 consecutive medical records of patients who died at an academic medical center and 32 consecutive medical records of patients who died at an affiliated Veterans Affairs hospital. Medical records were examined for documentation of symptoms, treatment, and orders to limit the use of life-sustaining interventions. RESULTS: The 104 patients who died had an average age of 68.9 years and 70 (68%) were men. The majority had neoplasms or acquired immunodeficiency syndrome, cardiovascular disease, and end-stage lung disease; the remainder died of other acute or chronic illnesses. In the last 2 days of life, pain was noted in 49 patients (46%). Dyspnea (n=53) and restlessness or agitation (n=50) were documented in 51% of the patients. In the last 48 hours of life 12 patients (12%) underwent an attempt at resuscitation, 26 patients (27%) were receiving ventilatory support, and 18% were restrained. Nearly half of the patients (48%) had an order or progress note specifying "comfort measures only" (CMO). Patients with CMO, compared with those without such orders, had similar levels of pain, agitation, and dyspnea. Patients with CMO were less likely to be in an intensive care unit (P=.001), receive ventilatory support (P=.001), receive antibiotics (P=.009), or be weighed (P=.001). CONCLUSIONS: Baseline information with which to begin improvement of care for dying individuals was obtained through a brief retrospective chart review. While patients with CMO receive less aggressive care, no specific process was used to provide comfort care. The evaluation and testing of processes of care for dying patients are necessary to begin the improvement of care. We provide baseline data about processes and outcomes of care in our hospitals.

Aged↗

Role of written advance directives in decision making: insights from qualitative and quantitative data.

OBJECTIVE: To understand the role of written advance directives (ADs) in medical decision making through examination of qualitative and quantitative data sources. We specifically wanted to address whether physicians unilaterally disregard advance directives. DESIGN: Block randomized controlled trial to improve decision making and outcomes of seriously ill patients. SETTING: Five academic medical centers. PATIENTS: Fourteen hospitalized, seriously ill adults were randomized to receive an intervention of patient-specific information on prognoses and specially trained nurse to facilitate decision making. To be included in this analysis, patients reported having an AD and also met one of these criteria of severity: were comatose, had objective estimate of prognosis for surviving 2 months of 40% or less, or died during this hospital admission. MEASUREMENTS AND MAIN RESULTS: Quantitative data sources consisted of medical record review and interviews with the patient (when possible), surrogate, and responsible physician about prognosis, symptoms, preferences, and decision making. Qualitative data consisted of narratives by the nurse responsible for counseling and facilitating decision making. Each element of the quantitative database was reviewed, and a timeline of communication and decision making was constructed. Qualitative data were analyzed using grounded theory and narrative summary analysis. We compared and contrasted qualitative and quantitative data to better understand the role of ADs in decision making. In each case, the patient had a period of diminished capacity in which ADs should have been invoked. Advance directives played an important role in decision making of 5 of 14 cases, but even in those cases, life-sustaining treatment was stopped only when the patient was "absolutely, hopelessly ill." In two of these cases, the family member wrongly reported that the patient had an AD, and in the remaining seven cases, ADs had a limited role. The limited role could not be traced to a single explanation. Rather, a complex interaction of several factors was identified: patients were not considered hopelessly ill, so the directive was never seen as applicable and a transition in the goals of care did not occur; family members or the designated surrogate were not available, were ineffectual, or were overwhelmed; or the content of the AD was vague, or not applicable to the clinical situation, and the intent in completing the AD was never clarified. A physician did not unilaterally disregard a patient's preference in any of the cases. Two factors that enhanced the role of the AD were an available surrogate who was able to advocate for the patient and open communication between the physician and the surrogate in which the patient's prognosis was reconsidered. CONCLUSIONS: Our findings indicate that physicians are not unilaterally disregarding patients' ADs. Despite the patients' serious illnesses, family members and physicians did not see them as "absolutely, hopelessly ill." Hence, ADs were not considered applicable to the majority of these cases. Cases in which ADs had an impact evidenced open negotiation with a surrogate that yielded a transition in the goals of care.

Adult↗

Influence of patient preferences and local health system characteristics on the place of death. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Risks and Outcomes of Treatment.

OBJECTIVE: To examine the degree to which variation in place of death is explained by differences in the characteristics of patients, including preferences for dying at home, and by differences in the characteristics of local health systems. DESIGN: We drew on a clinically rich database to carry out a prospective study using data from the observational phase of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT component). We used administrative databases for the Medicare program to carry out a national cross-sectional analysis of Medicare enrollees place of death (Medicare component). SETTING: Five teaching hospitals (SUPPORT); All U.S. Hospital Referral Regions (Medicare). STUDY POPULATIONS: Patients dying after the enrollment hospitalization in the observational phase of SUPPORT for whom place of death and preferences were known. Medicare beneficiaries who died in 1992 or 1993. MAIN OUTCOME MEASURES: Place of death (hospital vs non-hospital). RESULTS: In SUPPORT, most patients expressed a preference for dying at home, yet most died in the hospital. The percent of SUPPORT patients dying in-hospital varied by greater than 2-fold across the five SUPPORT sites (29 to 66%). For Medicare beneficiaries, the percent dying in-hospital varied from 23 to 54% across U.S. Hospital Referral Regions (HRRs). In SUPPORT, variations in place of death across site were not explained by sociodemographic or clinical characteristics or patient preferences. Patient level (SUPPORT) and national cross-sectional (Medicare) multivariate models gave consistent results. The risk of in-hospital death was increased for residents of regions with greater hospital bed availability and use; the risk of in-hospital death was decreased in regions with greater nursing home and hospice availability and use. Measures of hospital bed availability and use were the most powerful predictors of place of death across HRRs. CONCLUSIONS: Whether people die in the hospital or not is powerfully influenced by characteristics of the local health system but not by patient preferences or other patient characteristics. These findings may explain the failure of the SUPPORT intervention to alter care patterns for seriously ill and dying patients. Reforming the care of dying patients may require modification of local resource availability and provider routines.

APACHE↗

Outcomes and cost-effectiveness of initiating dialysis and continuing aggressive care in seriously ill hospitalized adults. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.

BACKGROUND: Renal failure requiring dialysis in the setting of hospitalization for serious illness is a poor prognostic sign, and dialysis and aggressive care are sometimes withheld. OBJECTIVE: To evaluate the clinical outcomes and cost-effectiveness of initiating dialysis and continuing aggressive care for seriously ill hospitalized patients. DESIGN: Prospective cohort study and cost-effectiveness analysis. SETTING: Five geographically diverse teaching hospitals. PATIENTS: 490 patients (median age, 61 years; 58% women) enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) in whom dialysis was initiated. MEASUREMENTS: Survival, functional status, quality of life, and health care costs. Life expectancy was estimated by extrapolating survival data (up to 4.4 years of follow-up) using a declining exponential function. Utilities (quality-of-life weights) were estimated by using time-tradeoff questions. Costs were based on data from SUPPORT and published Medicare data. RESULTS: Median duration of survival was 32 days, and only 27% of patients were alive after 5 months. Survivors reported a median of one dependency in activities of daily living, and 62% rated their quality of life as "good" or better. Overall, the estimated cost per quality-adjusted life-year saved by initiating dialysis and continuing aggressive care rather than withholding dialysis and allowing death to occur was $128,200. For the 103 patients in the worst prognostic category, the estimated cost per quality-adjusted life-year was $274,100; for the 94 patients in the best prognostic category, the cost per quality-adjusted life-year was $61,900. CONCLUSIONS: For the few patients who survived, clinical outcomes were fairly good. With the exception of patients with the best prognoses, however, the cost-effectiveness of initiating dialysis and continuing aggressive care far exceeded $50,000 per quality-adjusted life-year, a commonly cited threshold for cost-effective care.

Aged↗

Perceptions by family members of the dying experience of older and seriously ill patients. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments.

BACKGROUND: Alleviating the problems faced by dying persons and their families has drawn substantial public attention, but little is known about the experience of dying. OBJECTIVE: To characterize the experience of dying from the perspective of surrogate decision makers, usually close family members (89%). DESIGN: Prospective cohort study. SETTING: Five teaching hospitals. PATIENTS: Persons who had one of nine serious medical conditions or were 80 years of age or older who died and for whom a surrogate decision maker completed an interview about the death. MEASUREMENTS: Medical records were reviewed and surrogate decision makers were interviewed. RESULTS: 4124 of 9105 seriously ill patients died (46%); 408 of 1176 elderly patients died (35%). The patients' family members were interviewed after 3357 persons (73%) had died. Of 1541 patients who survived the enrollment hospitalization, 46% died during a later hospitalization. In the last 3 days of life, 55% of patients were conscious. Among these patients, pain, dyspnea, and fatigue were prevalent. Four in 10 patients had severe pain most of the time. Severe fatigue affected almost 8 in 10 patients. More than 1 in 4 patients had moderate dysphoria. Sixty-three percent of patients had difficulty tolerating physical or emotional symptoms. Overall, 11% of patients had a final resuscitation attempt. A ventilator was used in one fourth of patients, and a feeding tube was used in four tenths of patients. Most patients (59%) were reported to prefer a treatment plan that focused on comfort, but care was reported to be contrary to the preferred approach in 10% of cases. CONCLUSIONS: Most elderly and seriously ill patients died in acute care hospitals. Pain and other symptoms were commonplace and troubling to patients. Family members believed that patients preferred comfort, but life-sustaining treatments were often used. These findings indicate important opportunities to improve the care of dying patients.

Aged↗

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↗

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↗