Use and Meaning of "Goals of Care" in the Healthcare Literature: a Systematic Review and Qualitative Discourse Analysis

Background The specific phrase "goals of care" (GOC) is pervasive in the discourse about serious illness care. Yet, the meaning of this phrase is ambiguous. We sought to characterize the use and meaning of the phrase GOC within the healthcare literature to improve communication among patients, families, clinicians, and researchers. Methods A systematic review of the English language healthcare literature indexed in MEDLINE/PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Scopus was performed in October of 2018. We searched for all publications with the exact phrase "goals of care" within the title or abstract; no limitations on publication date or format were applied; conference abstracts were excluded. We used qualitative, discourse analysis to identify key themes and generate an operational definition and conceptual model of GOC. Results A total of 214 texts were included in the final analysis. Use of GOC increased over time with 87% of included texts published in the last decade (2009-2018). An operational definition emerged from consensus within the published literature: the overarching aims of medical care for a patient that are informed by patients' underlying values and priorities, established within the existing clinical context, and used to guide decisions about the use of or limitation(s) on specific medical interventions. Application of the GOC concept was described as important to the care of patients with serious illness, in order to (1) promote patient autonomy and patient-centered care, (2) avoid unwanted care and identify valued care, and (3) provide psychological and emotional support for patients and their families. Discussion The use of the phrase "goals of care" within the healthcare literature is increasingly common. We identified a consensus, operational definition that can facilitate communication about serious illness among patients, families, and clinicians and provide a framework for researchers developing interventions to improve goal-concordant care.