Improving Patient and Family Communication in the Care of Patients Undergoing Mechanical Ventilation

Abstract

Introduction: Approximately 800,000 hospitalized patients are mechanically ventilated each year in the United States, and as the population ages, the incidence of mechanical ventilation (MV) is increasing at a high rate. Patients often describe their experience with mechanical ventilation and the inability to communicate their needs and sensations to their families and providers as the most frightening and frustrating aspect of their care. The mechanically ventilated patient represents a crucial and growing subset of critically ill patients where improvements in patient and family communication are desperately needed. Objectives: Interview former MV patients and family members while engaging a patient and family council to develop a “patient and family-centered ventilator toolkit” to improve communication and to empower families to take an active role in the care of mechanically ventilated patients. Identify: 1) current knowledge and key experiences of mechanical ventilation, and 2) individual-centered approaches to communication. Materials and Methods: Focus groups were conducted with 26 former mechanical ventilation patients and family members using a facilitation guide developed by our multidisciplinary team including former patients and family caregivers. The focus groups were recorded, transcribed, and analyzed using a combination of a priori and inductive thematic codes in NVivo 12, a qualitative data analysis software package. A council of patient and family partners was engaged to develop a communication toolkit. Conclusions: Participants universally stated that mechanical ventilation is frightening, isolating, and in many cases, exceedingly traumatic. They described their challenges and frustrations communicating, as well as communication strategies they improvised. Their strategies were assembled into the toolkit. All participants felt there was an unmet need for communication resources for mechanically ventilated patients and family members. Next Steps: The toolkit is being provided to mechanically ventilated patients and families in an ICU at the Johns Hopkins Hospital. Preliminary survey results suggest patients using the toolkit have greater ease and satisfaction communicating with their care team and loved ones. Surveying and toolkit review are ongoing. Acknowledgements: This work was funded through an Agency for Healthcare Research and Quality award, K18 HS024200.