Use and Meaning of “Goals of Care” in the Healthcare Literature: a Systematic Review and Qualitative Discourse Analysis
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.
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.
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.
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.
KEY WORDSpalliative care terminology terminal care systematic review discourse analysis
We acknowledge Margaret L. Schwarze, MD, MPP, for her review of a prior version of this manuscript.
Compliance with Ethical Standards
Conflict of Interest
JMK received support for her time, in part, from NIH/NHLBI grant K23 HL146890. GJW received speaking fees from VitalTalk, a 501c3 nonprofit communication skills training organization. The remaining authors report no other sources of funding or conflicts of interest.
- 2.Kruser JM, Benjamin BT, Gordon EJ, et al. Patient and Family Engagement During Treatment Decisions in an ICU: A Discourse Analysis of the Electronic Health Record. Crit Care Med 2019.Google Scholar
- 4.NIH State-of-the-Science Conference Statement on improving end-of-life care. NIH Consens State Sci Statements 2004;21:1-26.Google Scholar
- 11.Green J, Thorogood N. Qualitative methods for health research. 4th edition. ed. Los Angeles: SAGE; 2018.Google Scholar
- 14.Tracy SJ. Interview planning and design: Sampling, recruiting, and questioning. Qualitative Research Methods: Collecting Evidence, Crafting Analysis, Communicating Impact. First ed: Blackwell Publishing Ltd; 2013.Google Scholar
- 15.Corbin J, Strauss A. Grounded Theory Research - Procedures, Canons and Evaluative Criteria. Qualitative Sociology 1990;19:418-27.Google Scholar
- 24.Wiese KT. Caring at the end of life: goals of care, sudden illness, withholding and withdraing care, and the last hours of life. The Prairie Rose: Official Publication of the North Dakota Nurses Association 2001.Google Scholar
- 39.Turnbull AE, Sahetya SK, Colantuoni E, Kweku J, Nikooie R, Curtis JR. Inter-rater agreement of intensivists evaluating the goal-concordance of preference-sensitive ICU interventions. J Pain Symptom Manage 2018.Google Scholar
- 40.Turnbull AE, Bosslet GT, Kross EK. Aligning use of intensive care with patient values in the USA: past, present, and future. Lancet Respir Med 2019.Google Scholar