Three decades of research in the United States indicates that Americans who are dying often spend their final days in pain and receiving treatments they would not choose. One in five deaths among adults occurs in or shortly after discharge from an intensive care unit (ICU), where there are well-documented problems with clinician-family communication and end-of-life care. These deficiencies are associated with poorly informed treatment decisions, lasting psychological distress among patients' surrogates, and high utilization of expensive, burdensome treatments at the end of life. Unfortunately, there are no practical, generalizable interventions proven effective in mitigating these three public health problems. In this application, we propose to address this gap by developing a web and tablet-based tool to enhance communication and shared decision making in ICUs, then conducting a pilot RCT among 100 patients assessing the interventions' impact on key elements of decision making quality. In preparation for this application, we conducted in-depth interviews with surrogates and clinicians to assess the acceptability of a web and tablet-based tool, which revealed broad support for the intervention, as well as valuable design suggestions: the tool should be accessible on-line at multiple time-points, and it should be designed to enhance rather than replace clinician-family communication.
In Aim 1, We will engage surrogates, clinicians, and experts in a highly iterative process of user- centered design to develop a tool that is usable, accessible, and poses low cognitive load for surrogates.
In Aim 2, we will conduct detailed usability and acceptability evaluations of the prototype tool among surrogates of patients with advanced critical illness and critical care physicians and nurses.
In Aim 3, we conduct a pilot RCT, using validated instruments to assess the intervention's impact on key elements of decision quality and the patient-centeredness of care decisions. We will also finalize procedures to collect long-term outcome data on patient, family, and health care utilization outcomes, which will be the main outcome measures of the anticipated multi-center trial that will follow. This project will have high impact if successful because it will yield a rigorously developed intervention and crucial preliminary data needed to conduct a multi-center trial to assess the interventions impact on patient and family outcomes. The tool has the potential to overcome major public health problems that affect the more than 600,000 Americans annually who die in ICUs and their family members. This proposal is innovative because it will produce a novel tool that challenges the existing paradigm of how decision support is provided in ICUs. The work is feasible in our hands because our team of established investigators has a proven record of success conducting trials in ICUs, have successfully used all methods proposed in this application, and have obtained buy-in for participation from the clinical sites.
Three decades of research in the United States indicates that Americans who are dying often spend their final days in pain and receiving treatments they would not choose. In this application, we seek to overcome the breakdowns in communication that contribute to these problems by developing and pilot testing a web and tablet-based tool to improve communication and shared decision making between clinicians and surrogates in ICUs; if successful, the intervention has the potential to substantially improve care for the roughly 600,000 older adults who die in ICUs annually.