Conceptualizing and Operationalizing the End of Life within Social Work Literature: A Content Analysis

Background and Purpose: Social workers can make meaningful contributions to end-of-life care due to their expertise in practice settings across the lifespan. However, little consensus exists regarding what it means to be at the end of life. This debate affects social work practice as varying conceptualizations and measurement (viz. eligibility criteria) influence who receives care. The purpose of this qualitative study was to identify and synthesize how the end of life is defined and measured in peer-reviewed social work literature.

Methods: Social work journals including the British Journal of Social Work, Child and Family Social Work, Social Service Review, Research on Social Work Practice, Health and Social Work, International Journal of Social Welfare, Social Work Research, Families in Society, Journal of Social Work Education, as well as the Journal of Social Work in End-of-Life and Palliative Care were hand-searched for articles that met the inclusion criteria. Included articles must have been published between January 2004 and January 2016, and included variants of “end-of-life” in the title or abstract. Reference lists of included articles were also searched. Further, social work experts in end-of-life care (e.g., NASW Palliative and End of Life Care Expert Steering Committee) were contacted to identify additional articles. Qualitative methods (i.e., content analysis) were used to synthesize how authors conceptualized and measured the end of life.

Results: Of the journals searched, we identified no qualified articles in Child and Family Social Work, Social Service Review,International Journal of Social Welfare, or Social Work Research. Included articles (N=103) were drawn from the Journal of Work in End-of-Life and Palliative Care (n=73), British Journal of Social Work (n=12), Health and Social Work (n=9), Social Work (n=4), Families in Society (n=2), Research on Social Work Practice (n=2), and Journal of Social Work Education (n=1). Included articles were qualitative (n=30), literature reviews (n=27), editorials (n=22), quantitative (n=16), or mixed methods (n=8). Sixty-eight articles (66%) provided conceptual definitions with primary themes, including: prognosis (n=17), dying (n=14), old age (n=5), admission to specific services (n=6), the death process (n=15), or a timeline (n=11). Only 20 articles (19%) reported the means by which the end of life was measured with primary themes including: determined by another person’s assessment (n=6), prognosis (n=4), diagnoses (n=6), service setting (n=2), and functional ability assessments (n=2).

Conclusions and Implications: Importantly, 34% of included articles did not offer a definition of the end of life and over 80% of included articles failed to provide distinct measures of how the end of life was identified. This raises concerns related to perspective-taking, as well as social workers’ ethical value of self-determination. Limited discussion related to measurement highlights that the end of life is highly subjective. This lack of clarity predicates an effort to develop consensus in social work literature. Enhanced clarity and consensus regarding how the end of life is defined and measured is essential to assuring appropriate end-of-life care as practitioners continue to apply end-of-life research to practice.