Composite Outcomes of Chronically Critically Ill Patients 4 Months After Hospital Discharge

Girard and Raffin1 first used the term “chronically critically ill” (CCI) in 1985 to describe patients in the intensive care unit (ICU) who survived an initial period of life-threatening illness but remained dependent on the high-technology services of the critical care unit. Since then, interest in describing the outcomes and resource utilization of these patients has increased steadily. Although no consensus has been reached about the precise definition of chronic critical illness, an ICU stay extending beyond 1 week and prolonged mechanical ventilation (>72 hours) are common criteria.2–4 Numerous investigations since the year 2000 have documented the high in-hospital mortality and continuing postdischarge morbidity in CCI patients.2–10 It is generally recognized that survival alone is not the only important outcome. Interviews with patients and their family members have consistently shown that they rate such outcomes as functional status, independence, ability to live at home, and burden on family as equal to and sometimes more important than length of survival.11,12 Patients have demonstrated the propensity to engage in rational decision making when faced with choices about treatment, weighing benefits and burdens.13 Patients’ preferences expressed in hypothetical situations are influenced by information provided by clinicians about probabilities of different outcomes and stem from preexisting beliefs, cultural and religious values, or worldviews regarding the purpose of life and the role of humanity, God, and medicine.14,15 Care of the CCI inevitably involves counseling patients, or more often family decision makers, about likely outcomes and also about probable burdens and benefits of possible interventions, such as tracheostomy, percutaneous gastrostomy for artificial nutrition and hydration, and cardiopulmonary resuscitation. Frequently asked questions of critical care clinicians include, Will he be able to come home?, Will she wake up?, or some version of, Will my family member have a good outcome? Answering these questions is difficult and often leaves both clinicians and family members with persistent uncertainty about the best course of action. In addition to factual updates about the patient’s condition and treatment options, discussion of probable long-term outcomes and eventual quality of life are often central. Data regarding likely postdischarge outcomes may be useful and important in decision making. However, researchers in previous studies have typically reported mortality, quality of life of survivors, and post-discharge functional status as discrete, separate outcomes. We suggest that it is not only reasonable but may be more consistent with how people think about final outcomes states to categorize outcomes into “better” or overall desirable states and “worse” or generally undesirable states. Preferences regarding survival and acceptable quality of life are inherently idiosyncratic, and previous research has confirmed wide variation in decisions about aggressiveness of care and treatment limitations, often related to cultural variations.16,17 Nevertheless, studies also have shown that cognitive status, ability to return home, and freedom from dependence on technology (in this case, mechanical ventilation) all are common and important components of a desirable quality of life to most patients and their family decision makers.12–14 Therefore, combining these outcomes into final composite states may be more meaningful and helpful for some in discussions of benefits and burdens. The purpose of this report is to examine “better” and “worse” composite outcome states through analysis of data from a large study of CCI patients and to identify predictors of these composite states. The primary outcome data from this study are presented else where,3 and the analysis provided here is offered as an alternative approach to traditional outcome evaluation.