The attitudes of patients with advanced AIDS toward use of the medical futility rationale in decisions to forego mechanical ventilation.

BACKGROUND: The medical futility rationale asserts that physicians need not offer their patients therapies that have zero or close to zero probability of success. The rationale is controversial, but it is used in practice. OBJECTIVE: To examine the attitudes of patients with advanced acquired immunodeficiency syndrome (AIDS) toward the medical futility rationale as it might apply to their medical care. METHODS: We conducted a cross-sectional study with interviewer-administered questionnaires. Fifty-seven patients with advanced AIDS (C3 stage AIDS and a CD4 cell count <100/microL) were recruited from academic and private clinics. MAIN OUTCOME MEASURE: Whether patients believe it is acceptable for physicians to withhold mechanical ventilation, without offering it, if physicians determine the intervention is futile. RESULTS: Sixty-one percent of patients (n=35) believed that it was definitely acceptable for their physician to not offer mechanical ventilation if the physician judged this intervention to be futile, and 26% (n= 15) believed this was probably acceptable. Less than 10% of patients (n= 5) said not offering therapy judged futile was definitely not acceptable. Patients who were less likely to prefer mechanical ventilation in different hypothetical health states were significantly more likely to accept decisions on the basis of futility (P=.003). Health-related quality of life, patient satisfaction with medical care, and patient-clinician communication about end-of-life care were not associated with attitudes toward medical futility. CONCLUSIONS: Although the majority of patients with advanced AIDS accept the medical futility rationale, a substantial minority do not. Acceptance of this rationale was associated with wanting less life-sustaining treatment. Physicians invoking the medical futility rationale and hospitals using policies incorporating the medical futility rationale should take into account this diversity in the attitudes toward medical futility.

Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians.

BACKGROUND: Patients with chronic and terminal disease frequently do not talk to their physicians about end-of-life care. Interventions to improve this communication have generally been unsuccessful, suggesting that important barriers to this communication must exist. OBJECTIVES: To determine the barriers to and facilitators of patient-clinician communication about end-of-life care and to identify barriers and facilitators that are more common among those patients who are least likely to discuss end-of-life care: minorities and injection drug users. METHODS: We conducted a prospective study of 57 patients with advanced acquired immunodeficiency syndrome and their primary care clinicians who were recruited from university and private clinics. Barriers to and facilitators of end-of-life communication were identified from a prior qualitative study and assessed for frequency and importance and for an association with the occurrence and quality of end-of-life communication. RESULTS: Clinicians identified more barriers than patients. Barriers identified by patients and clinicians fell into 3 categories of potential interventions: education about end-of-life care, counseling to help address end-of-life concerns, and health care system changes to facilitate patient-clinician communication. Although none of the patient-identified barriers was associated with the occurrence of communication, 2 clinician-identified barriers were associated with less communication: "the patient has not been very sick yet" and "the patient isn't ready to talk about end-of-life care." Nonwhite patients were more likely to identify the following 2 barriers than white patients: "I feel that if I talk about death, it could bring death closer" and "I don't like to talk about the care I want if I get very sick." CONCLUSIONS: The diversity of barriers and facilitators relevant to patients with acquired immunodeficiency syndrome and their clinicians suggests that interventions to improve communication about end-of-life care must be focused on individual needs and must involve counseling interventions and health system changes in addition to education. Clinician barriers are more common and more strongly associated with the occurrence of end-of-life communication than patient barriers, suggesting that clinicians are an important target group for improving this communication.

The effect of acute respiratory distress syndrome on long-term survival.

Despite a great deal of information about the risk factors, prognostic variables, and hospital mortality in the acute respiratory distress syndrome (ARDS), very little is known about the long-term outcomes of patients with this syndrome. We conducted a prospective, matched, parallel cohort study with the goals of describing the survival of patients with ARDS after hospital discharge and comparing the long-term survival of patients with ARDS and that of a group of matched controls. The study involved 127 patients with ARDS associated with trauma or sepsis and 127 controls matched for risk factor (trauma or sepsis) and severity of illness who survived to hospital discharge. Time until death was used as the outcome measure. Survival was associated with age, risk factor for ARDS, and comorbidity. There was no difference in the long-term mortality rate for ARDS patients and that of matched controls (hazard ratio for ARDS: 1.00; 95% confidence interval: 0.47 to 2.09) after controlling for age, risk factor for ARDS, comorbidity, and severity of illness. We conclude that if sepsis or trauma patients survive to hospital discharge, ARDS does not increase their risk of subsequent death. Older patients, patients with sepsis, and patients with comorbidities, regardless of the presence of ARDS, have a higher risk of death after hospital discharge. For the purposes of clinical prognosis and cost-effectiveness analysis, the long-term survival of patients with ARDS can be modeled on the basis of age, underlying risk factor for ARDS, and comorbidity.

Reduced quality of life in survivors of acute respiratory distress syndrome compared with critically ill control patients.

CONTEXT: Health-related quality of life (HRQL) is reduced in patients who survive acute respiratory distress (ARDS), but whether this decline in HRQL is caused by ARDS or other aspects of the patient's illness or injury is unknown. OBJECTIVE: To determine if there are differences in the HRQL of ARDS survivors and comparably ill or injured controls without ARDS. DESIGN: Prospective, matched, parallel cohort study. SETTING: A 411-bed municipal medical and regional level I trauma center. PATIENTS: Seventy-three pairs of ARDS survivors and severity-matched controls with the clinical risk factors for ARDS of sepsis and trauma admitted between January 1, 1994, and July 30, 1996. MAIN OUTCOME MEASURES: The HRQL of ARDS survivors and controls, assessed by generic and pulmonary disease-specific HRQL instruments (Medical Outcomes Study 36-Item Short Form Health Survey, Standard Form [SF-36] and St George's Respiratory Questionnaire [SGRQ], respectively). RESULTS: Clinically meaningful and statistically significant reductions in HRQL scores of ARDS survivors (n = 73) were seen in 7 of 8 SF-36 domains and 3 of 3 SGRQ domains compared with matched controls (P<.001 for all reductions). The largest decrements in the HRQL were seen in physical function and pulmonary symptoms and limitations. Analysis of trauma-matched pairs (n = 46) revealed significant reductions in 7 of 8 SF-36 domains (P< or =.02) and 3 of 3 SGRQ domains (P< or =.003). Analysis of sepsis-matched pairs (n = 27) revealed significant reductions in 6 of 8 SF-36 domains (P< or =.05) and 3 of 3 SGRQ domains (P< or =.002). CONCLUSIONS: Survivors of ARDS have a clinically significant reduction in HRQL that appears to be caused exclusively by ARDS and its sequelae. Reductions were primarily noted in physical functioning and pulmonary disease-specific domains.

Efficacy of high-intensity exercise training on left ventricular ejection fraction in men with coronary artery disease (the Training Level Comparison Study).

The purpose of this study was to compare high- versus low-intensity exercise training on the change in echocardiographic left ventricular ejection fraction (LVEF) from rest to peak exercise. Sedentary men with coronary artery disease, aged 30 to 70 years, were randomized to dynamic exercise training of either low intensity, 50% of maximal oxygen consumption, n = 89; or high intensity, 85% of maximal oxygen consumption, n = 111. No other interventions were imposed and patients were evaluated at 6 months and 1 year. Both exercise groups significantly increased exercise capacity without adverse events, but the increase was greater (p = 0.02) in the high-intensity exercise group. The mean exercise test rest-peak LVEF in the high-intensity group rose from 6.20% at baseline to 6.54% in 6 months and to 6.73% at 12 months, while the low-intensity group showed no improvement at 6 months and a decrease at 12 months. Multivariate analyses revealed that treatment group (high versus low intensity) significantly contributed to the change in rest-peak LVEF. When the exercise groups were subdivided by initial baseline LVEF < or = 50% versus > 50%, those with the higher LVEF in the high-intensity group showed a greater (p = 0.05) increase in the rest-peak LVEF from baseline to 1 year. Over a 1-year period, exercise capacity improved in both exercise-intensity groups, but more so in the high-intensity group, with no adverse events. The high-intensity group, compared with the low-intensity, showed more improvement in the rest-peak LVEF, especially in those with a higher LVEF at baseline.