Evolution in measuring the quality of dying.
OBJECTIVE
Despite multiple efforts to improve the experience for dying patients, researchers still struggle to identify appropriate outcome measures that assess patients' and families' experiences. If health care systems are to provide excellent, compassionate care to dying patients and their families, there must be a valid means of assessing the quality of those experiences and interventions to improve care. The purpose of this paper is to evaluate quality-of-life instruments currently used to assess the experiences of dying patients, and to offer a design for a next generation instrument to measure quality at the end of life.


METHODS
Sources were attained through a review of the quality of life, quality of dying, and end-of-life care literatures. The terms quality of life, quality of care, terminal care, hospice, assessment, and measurement were used singly and in combination in the MEDLINE database from 1966 to 2001.


CONCLUSIONS
An appropriate clinical quality of dying instrument must be derived from the perspectives of end-of-life care participants and include the multiple domains of experience important to patients and families. Because dying patients are often too ill to communicate, nonresponse bias is a major problem in this population. Researchers must identify additional objective and subjective measures that clearly reflect, correspond well (or predictably) with, and serve as alternatives to patients' self-ratings. Additionally, an appropriate assessment tool must accommodate individual definitions of the quality of dying and demonstrate sensitivity to change over time.
Program on the Medical Encounter and Palliative Care, Durham VA Medical Center and Division of General Internal Medicine, Center for the Study of Aging and Human Development, Duke University, North Carolina 27705, USA. karen.steinhauser@duke.edu
Karen E
KE
Steinhauser
Elizabeth C
EC
Clipp
James A
JA
Tulsky
D001293:Attitude to Death; D017051:Hospice Care / Q000523:psychology / Q000592:standards*; D006801:Humans; D017064:Process Assessment, Health Care / Q000379:methods*; D011785:Quality Assurance, Health Care / Q000639:trends*; D011788:Quality of Life / Q000523:psychology*; D013727:Terminal Care / Q000523:psychology / Q000592:standards*