Key Point:

• Evaluating long-term outcomes in ICU patients is complicated and must encompass both the medical and psychological consequences of critical care.

ORLANDO, FLA—Critical care medicine has made great strides in reducing the mortality rate associated with many severe illnesses. But what kind of life can survivors of intensive care expect? Should long-term quality of life be factored into the decision-making process when treatments are being considered in the ICU?

At the annual meeting of the Society of Critical Care Medicine, experts addressed the issue of long-term outcomes following a stay in the ICU.[1] They concluded that:
• It is difficult to predict who will do well.
• Quality of life is generally poor among ICU survivors.
• Long-term outcomes are frequently overlooked in favor of short-term solutions.
• Poor outcomes are often a result of social and psychological, rather than clinical, factors.

POOR OUTCOMES

Stanley A. Nasraway, MD, an Associate Professor of Medicine and Chief of the Surgical ICU at Tufts–New England Medical Center in Boston, said that most ICU patients are not much better at discharge than when they entered the ICU. In fact, he noted, many patients go downhill rapidly after ICU discharge.

According to Dr. Nasraway, studies have identified several indicators of poor outcomes that seem to hold true for most ICU patients. The likelihood of a poor outcome is increased in patients having severe illness, a gastrostomy, or tracheostomy, and in those who remain dependent on dialysis or mechanical ventilation. Age, comorbidities, and the ability (or inability) to perform activities of daily living also affect outcomes, he said.

Patients who require long-term care after ICU discharge also often fare poorly. When such a patient is transferred from a hospital to a long-term care facility, “there is a huge step down [in level of care],” Dr. Nasraway explained. Patients can go from having 18 hours of nursing care per day to only six or seven hours. He suggested that ICU physicians get to know the long-term care facilities to which their patients are admitted—especially since the level and quality of care vary greatly between facilities.

THE ELDERLY

Because it is difficult to generalize about ICU patients as a group, focusing on specific patient types is often preferable. Evert De Jonge, MD, from the University of Amsterdam’s Academic Medical Center, looked at long-term outcomes in the very elderly (85 and older). There is one practical problem in predicting outcomes for this group, said Dr. De Jonge. “Models like APACHE and SAPS were not made for older patients, and their predictive power is less than it is for younger patients.”

Investigators from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) asked seriously ill elderly patients who had a 50% chance of survival about their preferences for life-extending care. “Twenty-seven percent said they did not want it,” Dr. De Jonge noted. The SUPPORT study also revealed a lack of communication between patients and physicians. “Of the patients who wanted life-extending care, 80% of their doctors thought they did not want it.” The bottom line, he said, is that “we don’t know the preferences of our patients, but we do know that these preferences depend on the chances of a beneficial outcome.” Unfortunately, “we cannot predict that outcome,” he said.

Clearly, a new model to predict outcomes is needed for the elderly, Dr. De Jonge continued, and it should be an intuitive model that can determine functional status and quality of life. Prognostic models to predict in-hospital mortality are also important, he said, because prognosis affects patient preferences and end-of-life decisions.

QUALITY OF LIFE IN ARDS

Focusing on quality of life rather than solely on survival has also proved to be important in patients with ARDS, said Derek C. Angus, MD, MPH, an Associate Professor of Medicine in the Departments of Critical Care Medicine and Medicine and Health Services Administration at the University of Pittsburgh Medical Center. One key issue is that ARDS patients lose a significant amount of weight in the hospital—in some cases up to 20% of their body weight. Most of this is lean muscle, said Dr. Angus, lost because patients are in bed for weeks. By 12 months after discharge they have usually regained the weight. However, the regained weight is most likely not lean muscle mass. Thus, patients will probably have ongoing residual weakness that may interfere with their daily lives.

According to the literature, depression, anxiety, and weakness are common sequelae to ARDS. Even if they survive long term, “these patients are not exactly bouncing back,” Dr. Angus said, “and they were healthy people before ARDS.” One group of post-ARDS patients with a mean age of 45 had a six-minute walk distance that was one half to two thirds of that predicted for their age.

Dr. Angus cited a study showing that quality of life in previously healthy ARDS survivors is poor. In fact, it is worse than that in people with chronic diseases—even adolescents with cystic fibrosis. Much of the decline in quality of life is related to either the ICU experience or to permanent side effects of treatment given in the ICU.

ARDS survivors also have some degree of cognitive impairment, observed Dr. Angus; for example, they often experience memory problems. These patients may appear fine physically but cannot function as well as they used to. Those who return to work cannot maintain the level of work they did before their illness. Although this cognitive impairment may not be apparent, he noted, it places a lot of stress on the patient.

RECOVERY AND RETURN TO WORK

Sometimes, long-term outcomes are wholly unrelated to clinical outcomes but are instead a result of societal circumstances. Avery B. Nathens, MD, PhD, MPH, an Associate Professor of Surgery at Harborview Medical Center in Seattle, studied functional outcomes among patients recovering from critical injury. He found that most trauma deaths are usually the result of devastating head injury or comorbidities and are not medically preventable.

“Prevention reduces mortality, but the impact of medical care on trauma-related mortality is limited,” Dr. Nathens observed. He noted that the two interventions that have had the biggest impact on the incidence of trauma—far more than any advances in medicine—are speed limits and seatbelts.

The most important aspect of recovery for trauma patients is the ability to return to work, said Dr. Nathens. In one study, one half of trauma patients were back at work within a year. However, of those who returned to work, 30% reported decreased income. “They obviously had some functional limitations that prevented them from reaching their full potential,” Dr. Nathens noted. “And this really complicates the issue of return to work as an ideal outcome for these patients.”

Functional disability after critical injury is quite subjective, explained Dr. Nathens. “It depends on what you used to do before injury and what you can do now.” For instance, a person who is an office worker and can no longer lift heavy objects would not consider that disabling, whereas someone who works for a moving company definitely would.

The study of long-term outcomes in ICU patients is an evolving field. Studies first focused on short-term clinical outcomes only, then added the effects of ventilator dependence and whether patients can carry out activities of daily living. Such studies are now beginning to look at the mental health of both patients and caregivers.

“Patients are fragile and complex,” said Dr. Angus. It is not enough to look solely at short-term outcomes, because there may be unforeseen effects. “Don’t accidentally make things better in the short term,” he warned, “but worse in the long term.”

—Gale Jurasek

Reference
1. Long-term outcomes after critical illness. Presented at: Annual Meeting of the Society of Critical Care Medicine; February 23, 2004; Orlando, Fla.

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