What Terminally Ill Patients Care About: Toward a Validated Construct of Patients' Perspectives

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Abstract
Background: Citizens have conveyed to professionals that care at the end of life is less than optimal. Efforts to improve matters have tended to work in piecemeal fashion, on tangible more than personal aspects of care, and without the benefit of documented perspectives of those who face dying. Policy initiatives and clinical interventions need guidance from a broad framework that is validated by patients' perspectives. Purpose: Our goals were to: (1) assess the construct validity and stability over time of the portions of a conceptual framework that concern patients' subjective experiences; (2) develop a foundation for measurement of these personally meaningful factors; and (3) examine these factors' associations for potential clinical or policy significance. Population: Patients were from six diverse geographical areas whose physicians judged their survival prognosis to be 6 months or less. Physicians who referred the patients were randomly selected from state and specialty association lists. Methods: We used in-person survey methodology and multivariate analysis of patient responses. The analysis fell into two parts. Using exploratory factor analysis, we looked for evidence of discrete dimensions of experiences. Using regression analysis, we examined associations among them. Results: Of 1,131 eligible patients, 988 were interviewed (87.4% response rate). Of 682 patients who survived to follow-up interview 4-6 months later, 650 were interviewed (95.3% response rate). Exploratory factor analysis identified 12 discrete factors (accounting for 55% of variance; maximum Spearman's p = 0.24), 8 of which met criteria for representing measurable dimensions (accounting for 46% of variance). These 8 were: patient-clinician relationship; social connectedness; caregiving needs; psychological distress; spirituality/religiousness; personal acceptance; sense of purpose; and clinician communication. Eigenvalues ranged from 1.45 to 6.30 and Cronbach's α from 0.63 to 0.85. The concordance between these dimensions and those in the proposed framework indicated that two dimensions required minor modifications and six were confirmed, providing evidence of good construct validity for this portion of the framework. The same dimensions were also evident at follow-up except that the first two above-listed loaded on one combinedfactor, clinician interaction (eigenvalues 1.83-7.92; Cronbach's α from 0.64 to 0.86). This provides evidence of the construct's stability over time. Clinical communication and patient-clinician relationship were associated (odds ratio [OR] 2.79, 2.31-3.36). Better clinician communication correlated with somewhat better personal acceptance (OR 1.10,1.02-1.19), and a better patient-clinician relationship correlated with less psychological distress (OR 0.84, 0.75-0.95). Conclusions: We conclude that: (1) Personally meaningful aspects of patients' experience of terminal illness can be represented in valid, multidimensional constructs that are stable over time; (2) They are measurable; and (3) Aspects of the therapeutic relationship appear to correlate with patients' experience of the dying process.