Evaluating the quality of dying and death

We propose a model for evaluating the quality of dying and death based on c oncepts elicited from. literature review, qualitative interviews with perso ns with and without chronic and terminal conditions, and consideration of d esirable measurement properties. We define quality of dying and death as th e degree to which a person's preferences for dying and the moment of death agree with observations of how the person actually died, as reported by oth ers. Expected level of agreement is modified by circumstances surrounding d eath that may prevent following patient's Prior Preferences. Qualitative da ta analysis yielded six conceptual domains: Symptoms and personal care, pre paration for death, moment of death, family, treatment preferences, and who le person concerns. These domains encompass 31 aspects that can be rated by patients and others as to their importance prior to death and assessed by significant others or clinicians after death to assess the quality of the d ying experience. The proposed model uses personal preferences about the dyi ng experience to inform evaluation of this experience by others after death . This operational definition will guide validation of after-death reports of the quality of dying experience and evaluation of interventions to impro ve quality of end-of-life care. (C) U.S. Cancer Pain Relief Committee, 2001 .