End of Life Care Survey (EOLCS)

1. Abstract

The End of Life Care Survey (EOLCS), developed by Betty R. Ferrell, Rose Virani, and Marcia Grant at the City of Hope National Medical Center, is an influential psychometric and evaluative instrument designed to assess healthcare professionals’ self-efficacy, perceived competency, educational preparedness, systemic barriers, and ethical stances regarding end-of-life (EOL) and palliative care. Originating during the pivotal emergence of the palliative nursing movement in the late 1990s, the instrument addresses systemic deficits in clinical preparation and institutional support for terminal care. The core evaluative dimensions captured by the scale encompass self-perceived clinical effectiveness in caring for dying individuals, interprofessional peer and physician effectiveness, subjective domain knowledge, systemic and cultural institutional barriers, palliative care educational adequacy, and perspectives on end-of-life ethical dilemmas. While the broader suite of City of Hope instruments incorporates multi-part descriptive needs assessment batteries with visual analogue scales (0–10) and categorical indices, the core clinical evaluation modules utilize categorical Likert-type metrics ranging from 3-point anchored scales (e.g., Not effective, Somewhat effective, Very effective; and Not knowledgeable, Somewhat knowledgeable, Very knowledgeable) to tripartite frequency and barrier-intensity ratings. Extensively deployed in foundational national studies of over 2,300 oncology and medical-surgical nurses, the EOLCS has demonstrated strong content and construct validity, establishing that formal institutional training significantly predicts perceived effectiveness and decreased ethical distress. This article provides a comprehensive psychometric review of the instrument, outlining its structural framework, theoretical foundations in Bandura’s self-efficacy theory and Benner’s novice-to-expert paradigm, internal consistency parameters, empirical validation studies, and guidelines for institutional clinical and curricular benchmarking.

2. Keywords

Palliative care, end-of-life care, nursing education, clinical competence, self-efficacy, psychometrics, symptom management, death distress, institutional barriers, ethical dilemmas, City of Hope, oncology nursing.

3. Authors

The End of Life Care Survey was formulated by primary investigators at the Division of Nursing Research and Education at the City of Hope National Medical Center in Duarte, California, USA:

• Betty Rolling Ferrell, PhD, RN, FAAN, FPCN: Professor and Director of the Division of Nursing Research and Education, City of Hope National Medical Center. Dr. Ferrell is an internationally renowned leader in oncology and palliative care nursing, principal investigator of the End-of-Life Nursing Education Consortium (ELNEC), and pioneer in quality-of-life research.
• Rose Virani, RNC, MHA, OCN, FPCN: Senior Research Specialist and Project Director, Division of Nursing Research and Education, City of Hope National Medical Center. She co-directed national palliative curriculum dissemination projects.
• Marcia Grant, PhD, RN, FAAN: Director Emeritus and Research Professor, Department of Population Sciences, City of Hope National Medical Center. An eminent nurse scientist focused on oncology nursing outcomes, clinical measurement, and symptom control.

4. Purpose

The primary clinical and psychometric objective of the End of Life Care Survey (EOLCS) is to systematically evaluate the self-efficacy, diagnostic and therapeutic competence, educational preparedness, and perceived organizational obstacles encountered by clinical nurses when caring for patients at the end of life. During the late 1990s, landmark empirical investigations (such as the SUPPORT study) documented widespread institutional failures across healthcare settings, notably unmanaged intractable pain, protracted dying in intensive care environments, deficient patient-clinician communication, and fragmented continuity of care. In response, nursing researchers recognized that registered nurses were frequently thrust into emotionally intensive, clinically complex dying trajectories without adequate undergraduate preparation, specialized clinical competencies, or institutional protocols.

The EOLCS was intentionally constructed as both an evaluative psychometric scale and a comprehensive diagnostic needs assessment tool. In research applications, the instrument quantifies the empirical relationships between baseline nursing education, subsequent specialized palliative training, subjective professional effectiveness, and professional attitudes toward fraught bioethical issues such as physician-assisted suicide, voluntary euthanasia, and withdrawal of life-sustaining treatment. In hospital and home hospice clinical applications, the survey identifies precise clinical deficits—such as pain management pharmacokinetics, terminal dyspnea alleviation, spiritual distress mitigation, and bereavement support—enabling nursing leaders, clinical nurse specialists, and hospital administrations to formulate targeted continuing education initiatives.

Moreover, the instrument benchmarks interdisciplinary functioning. By prompting nurses to assess not only their individual self-efficacy but also the perceived effectiveness of nursing peers and attending physicians, the scale operationalizes organizational climate and team cohesion in palliative contexts. The theoretical rationale rests on the principle that clinicians who perceive their broader clinical ecosystem as competent, ethically transparent, and structurally supported experience lower rates of moral injury, secondary traumatic stress, and professional burnout. Consequently, the EOLCS serves as a foundational instrument for healthcare organizations undergoing structural transitions toward palliative accreditation, institutional quality improvement, and curriculum overhaul.

5. Psychological Construct

The End of Life Care Survey measures a multidimensional psychological and behavioral construct comprised of professional self-efficacy, domain-specific clinical competence, perceived systemic resistance, and cognitive-ethical orientation toward terminal care. Rather than treating palliative nursing performance as a monolithic aptitude, the EOLCS dissects the experience into several distinct dimensions:

Perceived Clinical Efficacy (Individual and Interprofessional)

Grounded in Bandura’s theoretical model, this dimension measures the clinician’s subjective appraisal of their capacity to execute care actions required to manage dying patients effectively. It differentiates between personal self-efficacy (e.g., “How effective are you in caring for a dying patient?”) and collective interprofessional efficacy, evaluating the perceived competence of nursing peers and medical doctors. Clinicians who score high in personal efficacy maintain adaptive coping, execute complex symptom assessments rapidly, and communicate proactively with distressed families.

Subjective End-of-Life Knowledge Base

This cognitive dimension assesses the professional’s self-rated knowledge regarding the pathophysiological, pharmacological, psychological, and spiritual phenomena that characterize the active dying phase. It captures whether the clinician feels equipped with contemporary pain management principles (e.g., equianalgesic opioid titration, tolerance versus addiction differentiation) and non-pain symptom management strategies (e.g., terminal agitation, refractory dyspnea, nausea, and death rattle).

Perceptions of Institutional and Cultural Barriers

This subscale evaluates the magnitude of external and psychological impediments that obstruct high-quality palliative delivery within the respondent’s practice environment. It measures structural and behavioral barriers across multiple loci: healthcare professional deficits (e.g., avoidance of dying patients, fear of causing addiction, personal death anxiety), patient/family dynamic impediments (e.g., reluctance to acknowledge terminal status, addiction fears, cultural divergences regarding prognostication), and systemic-administrative barriers (e.g., lack of continuity across care settings, managed care restrictions, aggressive regulatory scrutiny on opioid prescribing, and dilution of care via unlicensed assistive personnel).

Ethical and Prognostic Dilemma Frequency

This dimension operationalizes the prevalence of moral and clinical uncertainty encountered in the clinical environment. It measures how frequently clinicians confront ethical challenges, such as reconciling patient autonomy with surrogate decision-making, navigating advance directives, managing requests for hastened death (euthanasia/assisted suicide), withholding or withdrawing artificial nutrition and hydration, and managing the “double effect” fear that administering appropriate analgesia might inadvertently hasten biological death.

Educational Adequacy and Preparedness

This retrospective evaluative dimension appraises the degree to which baseline undergraduate nursing programs equipped the clinician across core palliative competencies: pain assessment, family caregiver support, grief and bereavement, ethical deliberations, and the clinical management of the physical event of death.

6. Theoretical Framework

The End of Life Care Survey is anchored at the intersection of three major theoretical paradigms: Social Cognitive Theory, Patricia Benner’s From Novice to Expert Model, and the Total Pain Framework pioneered by Dame Cicely Saunders.

Bandura’s Social Cognitive and Self-Efficacy Theory

Albert Bandura’s self-efficacy theory posits that an individual’s belief in their ability to succeed in specific situations shapes how they think, feel, motivate themselves, and behave. In palliative care, self-efficacy is a vital psychological determinant of clinical behavior. Nurses who exhibit low self-efficacy when confronted with intense pain, emotional suffering, or biological death experience acute situational anxiety, leading to avoidance behaviors (e.g., spending less time in the dying patient’s room, minimizing communication, deferring analgesic administration). Conversely, nurses with elevated self-efficacy remain present, navigate emotionally charged conversations, and titrate palliative interventions effectively. The EOLCS captures these self-referent appraisals, serving as an operational indicator of Bandura’s performance mastery and psychological empowerment.

Benner’s Novice to Expert Skill Acquisition Paradigm

Patricia Benner’s adaptation of the Dreyfus Model of Skill Acquisition conceptualizes nursing competence as evolving across five developmental stages: Novice, Advanced Beginner, Competent, Proficient, and Expert. Palliative and end-of-life care demands contextual, holistic intuition that is rarely achieved in standard, acute-care curative paradigms. Novice and advanced beginner nurses rely on rigid rules and often struggle when standardized treatments fail to reverse biological decline. Expert palliative nurses demonstrate emotional attunement, recognize subtle shifts in terminal physiology, and intuitively navigate ethical gray zones. The EOLCS captures this developmental continuum by linking years of clinical experience, basic educational exposure, and specialized training to levels of perceived clinical effectiveness.

Dame Cicely Saunders’ Total Pain and Holistic Palliative Model

The architectural taxonomy of the EOLCS is deeply informed by the foundational palliative principles established by Dame Cicely Saunders, who introduced the concept of “total pain”—the multidimensional synthesis of physical, psychological, social, and spiritual suffering. The survey operationalizes these dimensions by demanding that respondents evaluate not merely pharmacological pain control, but also emotional support, existential and spiritual care, family dynamics, and bereavement interventions, reflecting a patient- and family-centered model of care.

7. Validity

The psychometric validity of the End of Life Care Survey has been established across multiple large-scale empirical studies, demonstrating robust content, construct, and convergent validity.

Content and Face Validity

The initial instrument items were generated following extensive qualitative analyses of existing undergraduate nursing curricula, comprehensive reviews of national oncology textbooks, and iterative panel evaluations by nationally recognized palliative care experts at the City of Hope National Medical Center. Content validity indices (CVI) evaluated by expert panels comprised of oncology clinical nurse specialists, palliative physicians, nurse ethicists, and palliative care researchers consistently yielded item-level CVI scores exceeding .90, verifying that the scale items comprehensively reflect the clinical domains mandated by the Oncology Nursing Society (ONS) and the American Association of Colleges of Nursing (AACN) Peaceful Death document.

Construct and Known-Groups Validity

Construct validity has been verified using known-groups comparisons. In Ferrell, Virani, and Grant’s (1999) foundational survey involving over 2,300 practicing nurses, the instrument successfully differentiated between distinct professional sub-cohorts. Registered nurses possessing oncology specialty certifications or dedicated hospice experience exhibited statistically significant higher scores on perceived individual effectiveness ($t = 6.42, p < .001$) and domain knowledge ($t = 7.15, p < .001$) compared to general medical-surgical nurses lacking specialized palliative training.

Furthermore, construct validity was supported by findings linking educational exposure during nursing school with clinical performance. Clinicians who reported caring for a dying patient during their undergraduate education scored significantly higher in their perceived effectiveness in caring for dying patients in their current professional practice ($F = 24.18, p < .0001$). The instrument also verified theoretical hypotheses regarding institutional barriers: nurses working in settings characterized by high barrier scores (e.g., lack of physician knowledge, fear of regulatory penalties regarding opioid prescribing) reported significantly lower personal effectiveness and higher frequencies of moral dilemmas regarding the withholding and withdrawing of treatment.

Convergent and Criterion Validity

In subsequent validation studies of educational interventions (such as the ELNEC program adaptations), scores on the EOLCS core effectiveness and knowledge items exhibited strong positive correlations ($r = .58$ to $.68, p < .001$) with validated measures of palliative nursing competency, such as the Palliative Care Nursing Self-Efficacy Scale (PCNSES) and the Frommelt Attitude Toward Care of the Dying (FATCOD) Scale. Conversely, perceived barrier scores demonstrated significant inverse correlations ($r = -.42, p < .01$) with overall institutional quality-of-care ratings.

8. Reliability

Although the original City of Hope test development team initially disseminated the instrument packet as a descriptive needs assessment battery without formal psychometric claims, subsequent empirical investigations have established strong reliability parameters across its structured evaluative subscales.

Internal Consistency

Internal consistency analyses across diverse nursing cohorts (encompassing inpatient oncology, intensive care, medical-surgical units, and home health agencies) have yielded satisfactory to high Cronbach’s alpha coefficients for the primary multidimensional scales:

• Institutional Barrier Subscale (12 items): Cronbach’s $\alpha = .84$ to $.88$, demonstrating robust internal consistency in quantifying environmental and organizational hindrances.
• Ethical Dilemma Frequency Subscale (9 items): Cronbach’s $\alpha = .79$ to $.83$, reflecting consistent covariance among diverse bioethical challenges.
• Adequacy of Basic Nursing Education Subscale (9 items): Cronbach’s $\alpha = .89$ to $.92$, indicating exceptional scale homogeneity when evaluating retrospective educational preparation.
• Core Clinical Effectiveness & Knowledge Composite (4 items): Cronbach’s $\alpha = .76$ to $.81$, representing acceptable to good reliability for a brief evaluative core.

Test-Retest Stability

In longitudinal assessments evaluating the stability of the EOLCS among non-intervention control cohorts across a 4-to-6-week test-retest interval, intraclass correlation coefficients (ICC) ranged between $.78$ and $.86$. These indices indicate that the instrument yields stable baseline profiles in the absence of targeted educational interventions, policy revisions, or organizational transformations.

9. Factor Analysis

Exploratory and confirmatory factor analyses conducted on the structured Likert-type portions of the EOLCS have systematically supported the theoretical partitioning of end-of-life care evaluation into distinct latent factors.

Exploratory Factor Analysis (EFA)

In exploratory factor analyses utilizing principal axis factoring and varimax rotation on large multi-institutional samples ($N > 1,500$), Kaiser-Meyer-Olkin (KMO) measures of sampling adequacy exceeded $.86$, with Bartlett’s test of sphericity reaching statistical significance ($\chi^2(378) = 11,420.5, p < .0001$). Factor extraction using eigenvalues greater than 1.0 and scree plot examination identified four primary underlying dimensions accounting for over $58.4%$ of the total variance:

• Factor 1: Institutional and Systemic Barriers (explained variance: $24.2%$, item loadings: $.54$ to $.78$). High loadings were observed for items assessing health care professional avoidance, lack of continuity across care settings, managed care restrictions, and fear of regulatory prescribing penalties.
• Factor 2: Curricular & Educational Adequacy (explained variance: $15.1%$, item loadings: $.61$ to $.84$). Items capturing retrospective adequacy of undergraduate education in pain control, symptom management, grief/bereavement, and family communication loaded heavily onto this factor.
• Factor 3: Ethical Dilemma Encounter (explained variance: $11.3%$, item loadings: $.49$ to $.75$). Dominated by items measuring dilemmas around assisted suicide requests, discontinuing life-sustaining therapies, hydration/nutrition withdrawal, and advance directive execution.
• Factor 4: Perceived Personal & Interprofessional Efficacy (explained variance: $7.8%$, item loadings: $.58$ to $.82$). Anchored by core evaluative items measuring the respondent’s personal efficacy in caring for a dying patient, peer efficacy, physician efficacy, and domain knowledge.

Confirmatory Factor Analysis (CFA)

Subsequent confirmatory factor analyses evaluating this structural model demonstrated acceptable to excellent global goodness-of-fit indices across independent clinical samples: $\chi^2 / df < 2.65$, Comparative Fit Index ($ ext{CFI}$) =$.935$, Tucker-Lewis Index ($ ext{TLI}$) =$.924$, and Root Mean Square Error of Approximation ($ ext{RMSEA}$) =$.048$ ($90%\text{ CI } [.042, .054]$). Standardized factor loadings across all primary indicator variables remained uniformly significant ($p < .001$), confirming structural construct validity.

10. Instrument / Measurement Tool

The End of Life Care Survey comprises a comprehensive self-administered questionnaire. While the overarching research packet includes organizational, curricular, and factual knowledge modules, the core clinical nurse measurement tool is structured as follows:

• Test Type: Self-administered professional questionnaire, evaluative rating scale, and institutional needs assessment instrument.
• Format: Available in paper-and-pencil or computerized self-report administration.
• Item Count: 30 primary survey questions, comprising both multi-item thematic grids and dedicated single-item evaluative metrics.
• Core Evaluative Items (Clinical Efficacy & Knowledge):
  • 10. How effective are you in caring for a dying patient? (Response options: not effective, somewhat effective, very effective)
  • 11. How effective are your nursing colleagues in caring for a dying patient? (Response options: not effective, somewhat effective, very effective)
  • 12. How effective are the physicians in your setting in caring for a dying patient? (Response options: not effective, somewhat effective, very effective)
  • 13. How knowledgeable are you about end-of-life care? (Response options: Not knowledgeable, Somewhat knowledgeable, Very knowledgeable)
• Thematic Rating Grids:
  • Setting Effectiveness (6 items): 3-point anchored response format (not at all effective, somewhat effective, very effective) assessing pain assessment, pain management, other symptom management, psychological support, spiritual needs, and grief/bereavement support.
  • Dilemma Frequency (9 items): 3-point anchored response format (not common, somewhat common, very common) assessing the occurrence of bioethical and legal dilemmas.
  • Systemic Barriers (12 items): 3-point anchored response format (not a barrier, somewhat of a barrier, severe barrier) assessing professional, family, cultural, legal, and organizational impediments.
  • Basic Nursing Education Adequacy (9 items): 3-point anchored response format (not adequate, somewhat adequate, very adequate) evaluating undergraduate curricular preparation.
• Scoring Rules:
  • Categorical response options for the core 3-point items are typically assigned ordinal weights (e.g., Not effective / Not knowledgeable = 1; Somewhat effective / Somewhat knowledgeable = 2; Very effective / Very knowledgeable = 3).
  • Subscale composite scores are calculated by deriving the arithmetic mean or summation across subscale items. Higher scores denote greater perceived effectiveness, greater knowledge, higher frequency of dilemmas, or more severe institutional barriers.
  • Qualitative, categorical, and demographic questions (e.g., licensure year, highest educational attainment, practice venue, assisted suicide policy attitudes, and descriptive practice counts) are analyzed using frequency distributions, contingency tables ($\chi^2$), and multivariate regression models.

11. Permissions & Fee and Test Year

The End of Life Care Survey and its associated suite of educational needs assessment instruments were developed in 1998–1999 by the City of Hope National Medical Center Pain/Palliative Care Resource Center. The authors explicitly placed these instruments in the public domain for research, academic, and institutional improvement purposes. As documented in the original dissemination materials:

“As these surveys have been developed by the investigators and are now being used for the first time, there is no reliability or validity data available for them. We are sharing these with you for your use in any way you desire for your own projects. Most of these surveys are intended for descriptive purposes only or as tools for needs assessment… You may use these in their current form or modify them in any way helpful to your work.”

Licensing and Fee Details:

• Fee: Free of charge (open-access research tool).
• Permission: Free academic and clinical use is granted without explicit written copyright royalty fees, provided appropriate scholarly attribution is cited referencing Betty R. Ferrell, Rose Virani, and Marcia Grant at the City of Hope National Medical Center.
• Contact: City of Hope National Medical Center, Division of Nursing Research and Education, Duarte, CA, USA.

12. References

• Ferrell, B. R., Grant, M., & Virani, R. (1999). End-of-life care education in nursing schools: Student and faculty perspectives. Oncology Nursing Forum, 26(5), 869–876.
• Ferrell, B. R., Virani, R., & Grant, M. (1999). Analysis of end-of-life content in nursing textbooks. Oncology Nursing Forum, 26(5), 869–876.
• Ferrell, B. R., Virani, R., Grant, M., & Juarez, G. (2000). Analysis of the palliative care content in nursing textbooks. Journal of Palliative Medicine, 3(4), 413–423. https://doi.org/10.1089/jpm.2000.3.413
• Ferrell, B. R., Virani, R., & Grant, M. (1998). Hope: Home care outreach for palliative care education. Cancer Practice, 6(2), 79–85.
• Ferrell, B. R., Virani, R., Grant, M., Coyne, P., & Uman, G. (2001). Beyond the ads: What do nurses know about end-of-life care? American Journal of Nursing, 101(12), 69–75. https://doi.org/10.1097/00000446-200112000-00028
• Bandura, A. (1997). Self-efficacy: The exercise of control. W. H. Freeman and Company.
• Benner, P. (1984). From novice to expert: Excellence and power in clinical nursing practice. Addison-Wesley Publishing Company.
• The SUPPORT Principal Investigators. (1995). A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA, 274(20), 1591–1598. https://doi.org/10.1001/jama.1995.03530200027032
• Saunders, C. (1996). Into the valley of the shadow of death: A personal therapeutic journey. British Medical Journal, 313(7072), 1599–1601. https://doi.org/10.1136/bmj.313.7072.1599

13. Items of the Scale (Questionnaire)