Defining patient and family engagement in the intensive care unit (February 2015)

Summary

Healthcare is in the midst of significant change, with substantial shifts in emphasis and priorities. Patient-centered care has become central to the core goals of better health, better quality, and lower costs while highlighting the necessity of incorporating patients’ efforts, needs, and perspectives into healthcare at all levels. Patient and family engagement (PFE) is critical to patient-centered care, and important theoretical and empirical work has identified key elements and implications of PFE, especially for management of chronic illnesses and preference-sensitive clinical decision making.

Brown et al. believe that the ultimate goal of active, mutually respectful partnership among clinicians and patients/families is urgent and important. However, consistent terminology and definitions of PFE are still lacking. This deficit is particularly striking in intensive care units (ICUs), which pose special challenges to outpatient models of PFE: the emotional stakes are high, time is greatly compressed, surrogates play a central role, and the specter of death often dominates decision making.

Content

Definition

The authors of this paper have developed a definition, including both a short-form and a long-form definition. Here is the short-form and the long-form can be found in the full paper:

Patient and family* engagement in the ICU is an active partnership between health professionals and patients and families working at every level of the healthcare system to improve health and the quality, safety, and delivery of healthcare. Arenas for such engagement include but are not limited to participation in direct care, communication of patient values and goals, and transformation of care processes to promote and protect individual respect and dignity. PFE comprises five core concepts: Collaboration, Respect and Dignity, Activation and Participation, Information Sharing, and Decision Making. Brief summaries of the core concepts are presented in Table 1 and depicted visually in Figure 1.

*Family is broadly defined to include all the individuals whom the patient wants involved in his/her care, regardless of whether they are related biologically, legally, or otherwise; if the patient is noncommunicative, health professionals will make their best effort to identify and include the individuals whom the patient would want involved in his/her care.