EXPLORING SURROGATES’ EXPERIENCES OF POLST DISCUSSIONS FOR INDIVIDUALS WITH ADVANCED DEMENTIA

EXPLORING SURROGATES’ EXPERIENCES OF POLST DISCUSSIONS FOR INDIVIDUALS WITH ADVANCED DEMENTIA Hyejin Kim Mary Ersek The Physician Orders for Life-Sustaining Treatment (POLST) paradigm is considered quality practice for individuals with advanced dementia. Critical to the effective use of POLST are open discussions between surrogate decision makers and healthcare providers about patients’ values, current status, goals of care, and treatments. However, little is known about communication between surrogates and providers during POLST discussions for this patient population. Also, little evidence about surrogates’ experiences of POLST discussions exists. This dissertation explored surrogate-provider communication during POLST discussions for individuals with advanced dementia (Chapter 2), described surrogates’ experiences of providers’ communication (Chapter 3), and developed a postdoctoral research proposal to develop and test a POLST communication training program (Chapter 4). The Torke et al. (2012) conceptual model of Communication and Surrogate Decision Making guided the entire dissertation. For qualitative descriptive studies in Chapters 2 and 3, ten surrogate-provider POLST discussions were observed and audiorecorded, followed by ten interviews with surrogates about their experiences of providers’ communication. Data were analyzed using a directed content analysis approach. Chapter 2 described a two-way communication process during POLST discussions that included information disclosure, sense making, emotional support, and consensus. Findings show that POLST discussions rarely included exploration of surrogates’ expectations about treatments or their preferred roles and levels of participation in decision making. Chapter 3 presented how providers’ communication helped or hindered surrogates in processing clinical information and feeling respected and understood. In particular, experiences of one surrogate who had ineffective communication with the provider were presented. The findings from Chapters 2 and 3 served as a foundation to design a pilot study that will develop a POLST communication training program and test its feasibility. The training program consists of an online didactic session and a Standardized Patient exercise. This body of work adds to the understanding of surrogate-provider communication in the context of POLST discussions for individuals with advanced dementia in nonhospital settings, and informs the development of an educational intervention to improve providers’ POLST communication.