Measuring Quality of Life at the End of Life

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Book Chapter

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Family Caregiver, Patient Quality, Hospice Care, Palliative Care Patient, Spiritual Issue

Digital Object Identifier (DOI)



For patients near the end of life, quality of life becomes an even more central goal of care than for patients for whom recovery is expected. While patient quality of life is essentially an individual matter and a reflection of a particular patient’s goals, experiences, values and preferences for treatment, there is considerable agreement about what domains are relevant. Domains that comprise patient quality of life at the end of life generally include: trusting one’s physician, avoiding a prolonged dying experience, attaining a sense of closure, avoiding being a burden to family members, managing pain and other symptoms, and maintaining open communication.

The characteristics of quality of life measures useful in this context are described, and seven quality of life measures with demonstrated reliability and validity in the end of life context are discussed. The domains that comprise quality of care at the end of life overlap the domains of quality of life; thus three measures of quality of care at the end of life are also described. Since patients nearing the end of life are often debilitated and unable to respond to measurement instruments, the benefits and risks of using proxy data for patient quality of life measurements are summarized. The influence of hospice care on patient quality of life is summarized, as well as the difficulties of conducting research in this patient population. The chapter concludes with suggested directions for future research.

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Citation / Publisher Attribution

Measuring Quality of Life at the End of Life, in V. R. Preedy & R. R. Watson (Eds.), Handbook of Disease Burdens and Quality of Life Measures, Springer, p. 2687-2703