for: Exploring How Spokespersons Understand and Experience Surrogate Decision Making The importance of advance care planning is widely appreciated. What we have learned from our current study (#5R01NR012757), however, is that ACP interventions demonstrated to be effective with patients and clinicians do not work as well for spokespersons of patients with serious, advanced illness, and in particular do not appear to decrease spokesperson distress from surrogate decision-making. We also discovered that spokespersons often conceive of surrogate decision-making differently than clinicians/researchers. This new discovery is important because to evaluate whether ACP helps ensure a patient's wishes are respected, or prepares a spokesperson to represent a patient, or decreases decisional distress, we must first be able to accurately identify whether and when a surrogate decision has been made. So, if (as our data suggest) spokespersons often conceptualize and report surrogate decision-making differently than clinicians and researchers, such differences must be well understood before we can design ACP interventions that are effective for spokespersons. This 3-year study will capitalize on a rare opportunity to study the actual experiences of a large cohort of spokespersons in the throes of surrogate decision-making. Specifically, we will continue to follow 150 spokespersons (of patients with serious, advanced illness) who are already enrolled in our parent R01grant. Using a convergent mixed- methods study design we will: 1) interview spokespersons soon after they have made (or report that they made) a surrogate decision and perform an ethnographic analysis; 2) measure their distress from surrogate decision-making, as well as their individual decision-making styles and personality traits using quantitative questionnaires; 3) transform qualitative themes into categories and relate them to the quantitative data (personality trait, decision styles and subjective stress) using a joint display; and 4) integrate these findings with data from the parent R01. From this, we will develop recommendations for tailoring ACP interventions to better meet emotional and other needs of spokespersons. The proposed study takes advantage of a rare and time-sensitive opportunity to acquire highly generalizable knowledge about the ACP needs of spokespersons for patients with serious, advanced illness. Specifically, the spokespersons are already enrolled in the parent R01 study (with an attrition rate of just 6% between study visits); the expected surrogate decisions that will occur during the study period will generate extensive qualitative data that can be integrated with both new and existing data; and the mixed-methods approach will reveal new insights that would not be gained by examining the qualitative and quantitative findings independently. The study will also identify psychological factors that are associated with better outcomes (notably, less distress), which will allow our interdisciplinary team to generate recommendations for tailoring ACP interventions that address emotional needs of spokespersons. Taken together, the proposed study has the potential to greatly improve the efficacy of ACP by helping researchers and clinicians create and implement tailored ACP interventions that are better aligned with the needs of spokespersons ?who are called upon to represent severely ill patients and make life-or-death medical decisions when the patients cannot.
The importance of advance care planning (ACP) is widely appreciated, however, our recent study has shown that ACP interventions that are effective for patients and clinicians do not work as well for spokespersons of patients with advanced, serious illnesses. Our proposed project will help us gain a better understanding of how spokespersons understand their role as surrogate decision-makers, what helps them feel prepared for that role, and what factors contribute to the distress often experienced when making surrogate medical decisions. Results from this study will help researchers and clinicians create ACP interventions that better meet the emotional and other needs of spokespersons who are called upon make life-or-death medical decisions for patients who cannot speak for themselves.
