Communication with Healthcare Providers at End of Life: The Perspective of Decedents' Next of Kin: A Dissertation

Abstract

Communication with healthcare providers (HCP’s) at the end-of-life (EOL) is a crucial process that can make a difference in the quality of the EOL experience for patients and their families. Targeting EOL communication interventions between patients, their families, and HCP’s is better informed from an understanding of what family members perceive as good and bad communication. The purpose of this study was to explore experiences related to communication with HCP’s in central Massachusetts during EOL care. Data from the parent study (n = 373) included responses from an open ended question at the end of the survey. The larger, qualitative descriptive study, from the parent study, (n = 218 ) that examined the open ended question revealed communication as the overarching theme. A secondary analysis of this open ended survey data using qualitative content analysis was used to describe next of kin’s perspectives of communication with HCP’s during the decedents’ end-of-life experience (n = 171). Family members (children = 38.4% and spouse = 22.0%) comprised the majority of the sample. Decedents were mostly 80 or older (47.6%), died in an acute care setting of mostly cancer (33.0 %) and cardiovascular disease (32.3%). Accessing information, emerged as the overarching theme. Continuum of information, healthcare provider sensitivity, having the answers and raising awarenesswere revealed as subthemes. The majority of respondents reported good aspects versus bad aspects of communication at the EOL. The framework for a good death (Emanuel & Emanuel (1998) under-girded the study but was not supported as it relates to these findings. The framework was useful in capturing the multidimensional process that each patient and their family could experience during the EOL process. The findings from this study provide insight for HCP’s about which aspects of communication are helpful at the EOL. Continuing education of the health care team on these identified helpful communication aspects will provide better access for patients and families for a quality EOL experience.