A Multicenter Study of the Causes and Consequences of Optimistic Expectations About Prognosis by Surrogate Decision-Makers in ICUs*

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Abstract

Optimistic expectations about prognosis by surrogate decision-makers in ICUs are common, but there are few data about the causes and clinical consequences. Our objective was to determine the causes of optimistic expectations about prognosis among surrogates and whether it is associated with more use of life support at the end of life. Prospective, multicenter cohort study from 2009–2012. Twelve ICUs from multiple regions of the United States. The surrogates and physicians of 275 incapacitated ICU patients at high risk of death. Surrogates and physicians completed a validated instrument assessing their prognostic expectations for hospital survival. We determined the proportion of surrogates with optimistic expectations, defined as a prognostic estimate that was at least 20% more optimistic than the physician’s, then determined how frequently this arose from surrogates miscomprehending the physicians’ prognosis versus holding more hopeful beliefs compared to the physician. We used multivariable regression to examine whether optimistic expectations were associated with length of stay, stratified by survival status, and time to withdrawal of life support among nonsurvivors. Overall, 45% of surrogates (95% CI 38–51%) held optimistic expectations about prognosis, which arose from a combination of misunderstanding the physician’s prognostic expectations and from holding more hopeful beliefs compared to the physician. Optimistic expectations by surrogates were associated with significantly longer duration of ICU treatment among nonsurvivors before death (β-coefficient= 0.44; 95% CI: 0.05–0.83; p=0.027), corresponding to a 56% longer ICU stay. This difference was associated with a significantly longer time to withdrawal of life support among dying patients whose surrogates had optimistic prognostic expectations compared to this who did not (β coefficient= 0.61; 95% CI: 0.16–1.07; p=0.009). The prevalent optimism about prognosis among surrogates in ICUs arises both from surrogates’ miscomprehension of physicians’ prognostications and from surrogates holding more hopeful beliefs. This optimism is associated with longer duration of life support at the end of life. In a multicenter study, optimism about prognosis by surrogates was common & associated with more use of life support in dying patients.

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End-of-life practices in European intensive care units: the Ethicus Study.

Charles Sprung, Simon Cohen, Peter Sjokvist … (2003)

While the adoption of practice guidelines is standardizing many aspects of patient care, ethical dilemmas are occurring because of forgoing life-sustaining therapies in intensive care and are dealt with in diverse ways between different countries and cultures. To determine the frequency and types of actual end-of-life practices in European intensive care units (ICUs) and to analyze the similarities and differences. A prospective, observational study of European ICUs. Consecutive patients who died or had any limitation of therapy. Prospectively defined end-of-life practices in 37 ICUs in 17 European countries were studied from January 1, 1999, to June 30, 2000. Comparison and analysis of the frequencies and patterns of end-of-life care by geographic regions and different patients and professionals. Of 31 417 patients admitted to ICUs, 4248 patients (13.5%) died or had a limitation of life-sustaining therapy. Of these, 3086 patients (72.6%) had limitations of treatments (10% of admissions). Substantial intercountry variability was found in the limitations and the manner of dying: unsuccessful cardiopulmonary resuscitation in 20% (range, 5%-48%), brain death in 8% (range, 0%-15%), withholding therapy in 38% (range, 16%-70%), withdrawing therapy in 33% (range, 5%-69%), and active shortening of the dying process in 2% (range, 0%-19%). Shortening of the dying process was reported in 7 countries. Doses of opioids and benzodiazepines reported for shortening of the dying process were in the same range as those used for symptom relief in previous studies. Limitation of therapy vs continuation of life-sustaining therapy was associated with patient age, acute and chronic diagnoses, number of days in ICU, region, and religion (P<.001). The limiting of life-sustaining treatment in European ICUs is common and variable. Limitations were associated with patient age, diagnoses, ICU stay, and geographic and religious factors. Although shortening of the dying process is rare, clarity between withdrawing therapies and shortening of the dying process and between therapies intended to relieve pain and suffering and those intended to shorten the dying process may be lacking.

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Use of intensive care at the end of life in the United States: an epidemiologic study.

Derek C Angus, Amber E. Barnato, Walter Linde-Zwirble … (2004)

Despite concern over the appropriateness and quality of care provided in an intensive care unit (ICU) at the end of life, the number of Americans who receive ICU care at the end of life is unknown. We sought to describe the use of ICU care at the end of life in the United States using hospital discharge data from 1999 for six states and the National Death Index. Retrospective analysis of administrative data to calculate age-specific rates of hospitalization with and without ICU use at the end of life, to generate national estimates of end-of-life hospital and ICU use, and to characterize age-specific case mix of ICU decedents. All nonfederal hospitals in the states of Florida, Massachusetts, New Jersey, New York, Virginia, and Washington. All inpatients in nonfederal hospitals in the six states in 1999. None. We found that there were 552,157 deaths in the six states in 1999, of which 38.3% occurred in hospital and 22.4% occurred after ICU admission. Using these data to project nationwide estimates, 540,000 people die after ICU admission each year. The age-specific rate of ICU use at the end of life was highest for infants (43%), ranged from 18% to 26% among older children and adults, and fell to 14% for those >85 yrs. Average length of stay and costs were 12.9 days and $24,541 for terminal ICU hospitalizations and 8.9 days and $8,548 for non-ICU terminal hospitalizations. One in five Americans die using ICU services. The doubling of persons over the age of 65 yrs by 2030 will require a system-wide expansion in ICU care for dying patients unless the healthcare system pursues rationing, more effective advanced care planning, and augmented capacity to care for dying patients in other settings.

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Half the families of intensive care unit patients experience inadequate communication with physicians.

E Azoulay, P Canouï, C Adrie … (2000)

Effective communication of simple, clear information to families of intensive care unit (ICU) patients is a vital component of quality care. The purpose of this study was to identify factors associated with poor comprehension by family members of the status of ICU patients. Prospective study. University-affiliated medical intensive care unit. A total of 102 patients admitted to an ICU for >2 days. The representatives of 76 patients who were visited by at least one person during their ICU stay were interviewed. Mean patient age was 54+/-17 yrs and mean Simplified Acute Physiology Score II at admission was 40+/-20. The representative was the spouse in 47 cases (62%). Among representatives, 25 (33%) were of foreign descent and 12 (16%) did not speak French. Mean duration of the first meeting with a physician was 10+/-6 mins. In 34 cases (54%), the representative failed to comprehend the diagnosis, prognosis, or treatment of the patient. Factors associated with poor comprehension by representatives included patient-related, family-related, and physician-related factors. Patient-related factors included age <50 yrs (p = .03), unemployment (p = .01), referral from a hematology or oncology ward (p = .006), admission for acute respiratory failure (p = .005) or coma (p = .01), and a relatively favorable prognosis (p = .04). Family-related factors were foreign descent (p = .007), no knowledge of French (p = .03), representative not the spouse (p = .03), and no healthcare professional in the family (p = .01). Physician-related factors were first meeting with representative <10 mins (p = .03) and failure to give the representative an information brochure (p = .02). Moreover, after the first meeting, caregivers accurately predicted poor comprehension by representatives (p = .03). Patient information is frequently not communicated effectively to family members by ICU physicians. Physicians should strive to identify patients and families who require special attention and to determine how their personal style of interrelating with family members may impair communication.