A Comparison of the Influence of Anticipated Death Trajectory and Personal Values on End-of-Life Care Preferences: A Qualitative Analysis

ABSTRACT

Objectives: We examined anticipated preferences for end-of-life (EOL) care in healthy older adults in the context of various terminal disease scenarios to explore the relationship between personal values and diseases and conditions that would influence EOL care choices.

Methods: Qualitative Descriptive Analysis was used to derive themes and the relationship between EOL preference themes and personal value themes in 365 respondents in a national sample of healthy older adults who completed a survey on their anticipated preferences for end-of-life (EOL) care.

Results: Reluctance to burden close others was the most frequently voiced personal value across all conditions affecting EOL preferences, followed by the personal value of quality of life. Concern about whether one’s wishes would be honored was more commonly voiced in the context of hypothetical, prospective terminal cancer than in neurological conditions. Respondents who voiced desire for autonomy in how they would die clearly attributed extreme pain as the primary influence on EOL preferences.

Conclusions: Comprehensive assessment of patient personal values should include consideration of particular chronic disease scenarios and death trajectories to fully inform EoL preferences.

Clinical Implications: Because personal values do influence EOL preferences, care should be taken to ascertain patient values when presenting diagnoses, prognoses, and treatment options. In particular, patients and families of patients with progressive neurological diseases will likely face a time when the patient cannot self-represent EOL wishes. Early discussion of values and preferences, particularly in the context of cognitive disease is vital to assure patient-directed care.

KEYWORDS:

• Advance health care directive
• end-of-life health
• palliative care

Acknowledgments

We would like to acknowledge Margaret F. Clayton, PhD, APRN, for her participation in the review of our categories and Donna Harp Ziegenfuss, EdD, for her guidance with coding strategy.

Funding

This research was funded by a grant from the University of Utah Center on Aging.

Additional information

Funding

This research was funded by a grant from the University of Utah Center on Aging.