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

  • Katharine Secunda
  • M Jeanne Wirpsa
  • Kathy J Neely
  • Eytan Szmuilowicz
  • Gordon J Wood
  • Ellen Panozzo
  • Joan McGrath
  • Anne Levenson
  • Jonna Peterson
  • Elisa J Gordon
  • Jacqueline M KruserEmail author
Review Article



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.


palliative 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.

Supplementary material

11606_2019_5446_MOESM1_ESM.docx (34 kb)
ESM 1 (DOCX 34 kb)


  1. 1.
    Stanek S. Goals of care: a concept clarification. J Adv Nurs 2017;73:1302-14.CrossRefPubMedGoogle Scholar
  2. 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
  3. 3.
    Hui D, Mori M, Parsons HA, et al. The lack of standard definitions in the supportive and palliative oncology literature. J Pain Symptom Manage 2012;43:582-92.CrossRefPubMedGoogle Scholar
  4. 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
  5. 5.
    Zanartu C, Matti-Orozco B. Comfort measures only: agreeing on a common definition through a survey. Am J Hosp Palliat Care 2013;30:35-9.CrossRefPubMedGoogle Scholar
  6. 6.
    Kelemen AM, Groninger H. Ambiguity in End-of-Life Care Terminology-What Do We Mean by “Comfort Care?”. JAMA Intern Med 2018;178:1442-3.CrossRefPubMedGoogle Scholar
  7. 7.
    Chen EK, Riffin C, Reid MC, et al. Why is high-quality research on palliative care so hard to do? Barriers to improved research from a survey of palliative care researchers. J Palliat Med 2014;17:782-7.CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Ferris FD, Bruera E, Cherny N, et al. Palliative cancer care a decade later: accomplishments, the need, next steps -- from the American Society of Clinical Oncology. J Clin Oncol 2009;27:3052-8.CrossRefPubMedGoogle Scholar
  9. 9.
    Hodges BD, Kuper A, Reeves S. Discourse analysis. BMJ 2008;337:a879.CrossRefPubMedGoogle Scholar
  10. 10.
    Zimmermann C. Acceptance of dying: a discourse analysis of palliative care literature. Soc Sci Med 2012;75:217-24.CrossRefPubMedGoogle Scholar
  11. 11.
    Green J, Thorogood N. Qualitative methods for health research. 4th edition. ed. Los Angeles: SAGE; 2018.Google Scholar
  12. 12.
    Guest G. Planning and Preparing the Analysis. Applied Thematic Analysis: SAGE Publications; 2012.CrossRefGoogle Scholar
  13. 13.
    Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res 2007;42:1758-72.CrossRefPubMedPubMedCentralGoogle Scholar
  14. 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. 15.
    Corbin J, Strauss A. Grounded Theory Research - Procedures, Canons and Evaluative Criteria. Qualitative Sociology 1990;19:418-27.Google Scholar
  16. 16.
    Fischer GS, Alpert HR, Stoeckle JD, Emanuel LL. Can goals of care be used to predict intervention preferences in an advance directive? Arch Intern Med 1997;157:801-7.CrossRefPubMedGoogle Scholar
  17. 17.
    Lefkowitz A, Henry B, Bottoms J, Myers J, Naimark DM. Comparison of Goals of Care Between Hemodialysis Patients and Their Health Care Providers: A Survey. Can J Kidney Health Dis 2016;3:2054358116678207.CrossRefPubMedPubMedCentralGoogle Scholar
  18. 18.
    Kaldjian LC. Teaching practical wisdom in medicine through clinical judgement, goals of care, and ethical reasoning. J Med Ethics 2010;36:558-62.CrossRefPubMedGoogle Scholar
  19. 19.
    Thomas RL, Zubair MY, Hayes B, Ashby MA. Goals of care: a clinical framework for limitation of medical treatment. Medical Journal of Australia 2014;201:452-5.CrossRefPubMedGoogle Scholar
  20. 20.
    Chelluri LP. Goals of Care: Role of Physicians in the ICU. Chest 2015;148:e184.CrossRefPubMedGoogle Scholar
  21. 21.
    Douglas SL, Daly BJ, Lipson AR. Differences in Predictions for Survival and Expectations for Goals of Care between Physicians and Family Surrogate Decision Makers of Chronically Critically Ill Adults. Res Rev J Nurs Health Sci 2017;3:74-84.PubMedPubMedCentralGoogle Scholar
  22. 22.
    Covinsky KE, Landefeld CS, Teno J, et al. Is economic hardship on the families of the seriously ill associated with patient and surrogate care preferences? SUPPORT Investigators. Arch Intern Med 1996;156:1737-41.CrossRefPubMedGoogle Scholar
  23. 23.
    Allen MB, Jesus JE. The language of goals of care: framing preferences at the end of life. Chest 2012;141:1126.CrossRefPubMedGoogle Scholar
  24. 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
  25. 25.
    Haberle TH, Shinkunas LA, Erekson ZD, Kaldjian LC. Goals of care among hospitalized patients: a validation study. Am J Hosp Palliat Care 2011;28:335-41.CrossRefPubMedGoogle Scholar
  26. 26.
    Bogardus ST, Jr., Bradley EH, Tinetti ME. A taxonomy for goal setting in the care of persons with dementia. J Gen Intern Med 1998;13:675-80.CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Lanken PN, Terry PB, Delisser HM, et al. An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med 2008;177:912-27.CrossRefPubMedGoogle Scholar
  28. 28.
    Peereboom K, Coyle N. Facilitating Goals-of-Care Discussions for Patients With Life-Limiting Disease-Communication Strategies for Nurses. Journal of Hospice & Palliative Nursing 2012;14:251-8.CrossRefGoogle Scholar
  29. 29.
    Kaldjian LC, Curtis AE, Shinkunas LA, Cannon KT. Goals of care toward the end of life: a structured literature review. Am J Hosp Palliat Care 2008;25:501-11.CrossRefPubMedGoogle Scholar
  30. 30.
    Scheunemann LP, Cunningham TV, Arnold RM, Buddadhumaruk P, White DB. How clinicians discuss critically ill patients’ preferences and values with surrogates: an empirical analysis. Crit Care Med 2015;43:757-64.CrossRefPubMedPubMedCentralGoogle Scholar
  31. 31.
    Sudore RL, Lum HD, You JJ, et al. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. J Pain Symptom Manage 2017;53:821-32.e1.CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Halpern J, Arnold RM. Affective forecasting: an unrecognized challenge in making serious health decisions. J Gen Intern Med 2008;23:1708-12.CrossRefPubMedPubMedCentralGoogle Scholar
  33. 33.
    Perkins HS. Controlling death: the false promise of advance directives. Ann Intern Med 2007;147:51-7.CrossRefPubMedGoogle Scholar
  34. 34.
    Fagerlin A, Schneider CE. Enough. The failure of the living will. The Hastings Center report 2004;34:30-42.CrossRefPubMedGoogle Scholar
  35. 35.
    Kirschner KL. When written advance directives are not enough. Clin Geriatr Med 2005;21:193-209, x.CrossRefPubMedGoogle Scholar
  36. 36.
    Tulsky JA. Beyond advance directives: importance of communication skills at the end of life. Jama 2005;294:359-65.CrossRefPubMedGoogle Scholar
  37. 37.
    Turnbull AE, Hartog CS. Goal-concordant care in the ICU: a conceptual framework for future research. Intensive Care Med 2017;43:1847-9.CrossRefPubMedPubMedCentralGoogle Scholar
  38. 38.
    Sanders JJ, Curtis JR, Tulsky JA. Achieving Goal-Concordant Care: A Conceptual Model and Approach to Measuring Serious Illness Communication and Its Impact. J Palliat Med 2018;21:S17-S27.CrossRefPubMedGoogle Scholar
  39. 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. 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
  41. 41.
    Hui D, De La Cruz M, Mori M, et al. Concepts and definitions for “supportive care,” “best supportive care,” “palliative care,” and “hospice care” in the published literature, dictionaries, and textbooks. Support Care Cancer 2013;21:659-85.CrossRefPubMedGoogle Scholar
  42. 42.
    Hui D, Nooruddin Z, Didwaniya N, et al. Concepts and definitions for “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care”: a systematic review. J Pain Symptom Manage 2014;47:77-89.CrossRefPubMedGoogle Scholar
  43. 43.
    McCloskey R. A guide to discourse analysis. Nurse Res 2008;16:24-44.CrossRefPubMedGoogle Scholar
  44. 44.
    Ford-Sumner S. Genre analysis: a means of learning more about the language of health care. Nurse Res 2006;14:7-17.CrossRefPubMedGoogle Scholar

Copyright information

© Society of General Internal Medicine 2019

Authors and Affiliations

  • Katharine Secunda
    • 1
    • 2
  • M Jeanne Wirpsa
    • 3
  • Kathy J Neely
    • 1
    • 4
  • Eytan Szmuilowicz
    • 1
    • 4
  • Gordon J Wood
    • 1
    • 4
  • Ellen Panozzo
    • 3
  • Joan McGrath
    • 3
  • Anne Levenson
    • 1
    • 2
  • Jonna Peterson
    • 1
    • 5
  • Elisa J Gordon
    • 1
    • 6
    • 7
    • 8
  • Jacqueline M Kruser
    • 1
    • 2
    • 7
    Email author
  1. 1.Northwestern University Feinberg School of MedicineChicagoUSA
  2. 2.Department of Medicine, Division of Pulmonary and Critical CareNorthwestern University Feinberg School of MedicineChicagoUSA
  3. 3.Northwestern Memorial HospitalChicagoUSA
  4. 4.Department of Medicine, Division of Hospital MedicineNorthwestern University Feinberg School of MedicineChicagoUSA
  5. 5.Galter Health Sciences Library and Learning CenterNorthwestern University Feinberg School of MedicineChicagoUSA
  6. 6.Department of Surgery, Division of TransplantationNorthwestern University Feinberg School of MedicineChicagoUSA
  7. 7.Center for Health Services and Outcomes ResearchNorthwestern University Feinberg School of MedicineChicagoUSA
  8. 8.Center for Bioethics and Medical HumanitiesNorthwestern University Feinberg School of MedicineChicagoUSA

Personalised recommendations