What Is Chronic Critical Illness and What Outcomes Can Be Expected

What Is the Definition of Chronic Critical Illness?

Chronic critical illness (CCI) is a syndrome characterized by persistent organ dysfunction and prolonged intensive care needs. Patients with CCI have survived the acute phase of critical illness but remain dependent on life-sustaining therapies. Common features of CCI include ventilator dependence, delirium and coma, neuromuscular weakness, and malnutrition, among others. Historically, the term “prolonged mechanical ventilation” was used to describe the treatments received by this patient group, defined either by a specific number of ventilator days, placement of tracheotomy for prolonged respiratory failure, or both. Such a definition was popular because of the relative simplicity of case identification and its facilitation of administrative database-driven research such as those using the International Classification of Disease (ICD) and Diagnosis Related Group systems. However, various authors have defined prolonged mechanical ventilation as ranging from 2 days to 1 month while not all have incorporated the placement of a tracheotomy in their research populations. This has led to confusion for practitioners who have rightly questioned the relevance of these varying definitions to clinical practice. Also, researchers have increasingly felt a sense that defining a patient group by a procedure such as tracheotomy likely represents an overspecification. For example, is the outcome significantly different between a patient ventilated for 2 weeks with a tracheotomy and a patient without a tracheotomy? Also, tracheotomy practices are significantly different between and even within hospitals, and although definitive clinical trial data supporting early tracheotomy are lacking, this procedure is being performed earlier over time. When one examines outcome data for this patient group over the past 20 years, one is struck by the relatively unchanged mortality rate and the uniformity of outcomes, even given different cohort definitions. In an effort to promote clarity in clinical and research settings, Nelson and colleagues have recommended that patients be considered to have entered the phase of CCI when they have received at least 10 days of mechanical ventilation and their physician does not expect them to die or be liberated from mechanical ventilation within the next 72 hours. Additionally, the U.S. Centers for Medicare & Medicaid Services solicited input from clinicians, researchers, and policymakers to achieve a new consensus definition for CCI beyond just ventilated patients to identify clinically homogenous groups of patients who are likely to use very high levels of resources and have extended or repeated hospital stays. The final definition, developed in conjunction with the Research Triangle Institute (RTI), consisted of one of five eligible clinical conditions plus at least 8 days in an ICU during an acute care hospitalization. The five eligibility conditions were (1) prolonged acute mechanical ventilation; (2) tracheotomy; (3) sepsis and other severe infections; (4) severe wounds; or (5) multiple organ failure, ischemic stroke, intracerebral hemorrhage, or traumatic brain injury. Regardless of the definition used, patients with CCI remain unified by high mortality, poor functional and cognitive outcomes, and high consumption of health care resources.

How Do ICU Clinicians Approach Patients With Chronic Critical Illness?

Although an operational definition is necessary for clinicians and researchers to be able to communicate effectively about a patient group, it is instructive to consider how clinicians intuitively approach the chronically critically ill patient. In general, patients with CCI, more specifically those who undergo tracheotomy, are thought by clinicians to have a reasonable likelihood of short-term survival. From a clinician’s decision-making perspective, proceeding with tracheotomy may represent their sense that an investment in continuing life-sustaining care is likely to pay off in terms of survival. That is, although a patient may have had an acute critical illness such as sepsis or pneumonia, they survived the initial insult and may have in fact stabilized ( Fig. 48.1 ). Additionally, it is expected that some disease processes may require relatively long periods of support, such as those with severe pneumonia who require extracorporeal membrane oxygenation (ECMO) support.

Because of this relative stability—or perhaps a lack of deterioration—clinicians may feel uncomfortable deviating from the current course of care toward an emphasis on comfort-focused care. It may also reflect a clinician’s sense that some processes such as intracerebral hemorrhage or trauma may have trajectories of recovery that sometimes necessitate prolonged care. Even after initial stabilization has occurred, many patients will experience “cascading critical illness,” acquiring new problems throughout the ICU stay that further contribute to heightened morbidity and mortality. Intrinsic patient characteristics, admitting diagnoses, and conditions acquired throughout the ICU stay must all factor into clinical decision making for the patient with CCI.

What Are the Perspectives of Patients’ Family Members?

The critically ill patient is often bewilderingly complex to their family members and friends. In our experience, it is therefore often difficult for many family members to conceive of an illness of such severity and complexity and requiring such intense decision making. Family members and loved ones, patients’ informal caregivers, and surrogate decision makers are often overwhelmed in the case of CCI. Many families report feeling frustrated by various aspects of the ICU experience and endorse poor communication and lack of continuity among providers as important stressors. This affects the communication and decision-making process and is important for consideration by the practitioner.

Family members often lack sufficient information and understanding of the patient’s illness to fully engage in decision making. One study showed that over half of families did not comprehend the diagnosis, prognosis, or treatment of their critically ill loved one—even after a clinician–family meeting. Psychological distress is common among family members of patients with CCI. Over two-thirds of families suffer from significant symptoms of depression or anxiety during the period in which their loved one is hospitalized, and in some family caregivers these symptoms may persist for up to 1 year. Clinically significant symptoms of posttraumatic stress disorder (PTSD) are present in about one-third of families at 90 days after the onset of a loved one’s chronic critical illness. Deficits in the communication and emotional support provided by clinicians in the ICU have been associated with heightened symptoms of PTSD, such as family perception that clinicians did not listen to their concerns, inadequate explanation of the pain management strategy for their loved one, or inadequate religious support. There are other stresses, as well. Many families must travel from out of town to be with their loved one, leaving work and families. Past authors have reported that nearly one-third of families lost most of their life’s savings as a result of a family member’s serious illness. This financial burden is strongly associated with psychological distress. Surrogate decision makers describe feelings of guilt and blame in the context of bringing the patient into the hospital and consenting to invasive procedures on their behalf. In addition to this emotional burden, families often endorse physical exhaustion, having spent many hours at the bedside. Taken together, families suffer an enormous emotional and financial burden during the hospitalization, leading some authors to question these surrogate decision makers’ appropriate role in making decisions about the goals of treatment.

Who Is the Typical Patient With Chronic Critical Illness?

CCI is a syndrome predominantly observed among adults over age 55 years, with the exception of cases of trauma. Most of the medical literature addressing this patient group has reported remarkably similar age (~55 to 65 years of age) and gender (roughly 50% female) across studies. Although there has been relatively little comparative study of the chronically critically ill to other critically ill patients, some studies suggest that there is no significant difference in baseline functional status limitation between those with acute versus CCI, although patients with CCI may have a larger burden of chronic medical comorbidities.