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Evolution in measuring the quality of dying
Karen E Steinhauser1, Elizabeth C Clipp, James A Tulsky
1Program 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
Journal of Palliative Medicine
|July 23, 2002
Summary
Researchers need better tools to measure the quality of end-of-life care for dying patients and their families. This study reviews current instruments and proposes a next-generation assessment for improved quality of dying measurement.
Area of Science:
- Palliative Care
- Health Outcomes Research
- Quality Improvement
Background:
- Improving end-of-life care experiences for patients and families is a persistent challenge.
- Valid outcome measures are crucial for assessing and enhancing the quality of care provided to dying patients.
Purpose of the Study:
- To evaluate existing quality-of-life instruments used for assessing the experiences of dying patients.
- To propose a design for a next-generation instrument to measure quality of dying.
Main Methods:
- Literature review of quality of life, quality of dying, and end-of-life care.
- Searched MEDLINE database (1966-2001) using terms related to quality of life, care, terminal care, hospice, assessment, and measurement.
Main Results:
- Current instruments may not fully capture the multifaceted experiences of dying patients and their families.
- Challenges include nonresponse bias due to patient illness and the need for measures sensitive to individual definitions of quality.
Conclusions:
- Future quality of dying instruments must incorporate participant perspectives and multiple domains of experience.
- Development should focus on objective and subjective measures that complement patient self-ratings and accommodate individual needs.
- Assessment tools must demonstrate sensitivity to changes over time to track care improvements.