Evidence-based approach to family care in the intensive care unit: Why can’t we just be decent?*

Abstract

The crisis of a critical illness not only affects the patient; it affects the whole family. When we save a patient, we save a family. When we lose a patient, it is a loss for the family. We are in this together: the caregivers, the patients and their families. Certainly our first obligation is to the patient, but our second is to the family. For compassionate practitioners, should not common sense and decency make high-quality care of the family a natural part of the care of the critically ill? In 1979, Nancy Molter created the Critical Care Family Needs Inventory (CCFNI), which identified the family’s ten top needs (1). It has been validated and replicated in dozens of studies in several countries (2). In 2002, Heyland et al. (3) developed and validated a tool to measure family satisfaction. In this issue of Critical Care Medicine, Dr. Dodek and colleagues (4) from the same Canadian research group offer advice on how to translate family satisfaction data into quality improvement. The article overviews the abundant literature and research in quality improvement and applies it to a unique, narrow focus: family satisfaction in intensive care. The authors recommend linking data collection to the timeline of care as well as to the places and people involved. This framework links opportunities for improvement to the appropriate time and personnel, and it allows family needs to be predicted along the continuum of care. A case scenario is used to demonstrate the use of various methods used to collect and display data and to identify potential pitfalls or roadblocks. Ultimately, this article is a primer and short tutorial for those interested in beginning to evaluate and improve family care in their units. The recommendations are largely based on the opinions of the authors. Although their expertise in this area is established, the validity of the methods recommended has not been. Quality improvement work in family satisfaction has just begun, and the authors’ efforts may help others add to the body of evidence in the arena. As more external groups such as the Joint Commission, government agencies, purchasers, and consumer advisory panels demand reports on the quality of care we provide, critical care will come under more scrutiny. These groups tend to value patient satisfaction highly. Although the correlation has not been established, family satisfaction is often used as a surrogate for patient satisfaction in critical care. Because of their altered level of consciousness and cognition, critical care patients are more concerned about their immediate physical comfort and environment than their ultimate prognosis or medical situation. Families too are often concerned about the patient’s comfort and prognosis, but they also worry about the effect of the patient’s outcome on the family unit. When making patient care decisions, we focus our attention on understanding which of the treatment options the patient would want and expect the family to do the same. When caring for families, we try to understand what they need. Although the tools developed can help us measure and improve our performance, each family unit is unique. The best information about what families need often comes from the relationship we establish with them, the trust they develop in us, and the time we spend together at the bedside. We may not be good at guessing how family members feel or what they need, but we can ask. The quality of their responses will depend in part on the quality of the relationships we establish. One important additional family need has been identified since Molter established the original CCFNI 25 yrs ago.