BOX 9.1
Limiting Factors in Research to Improve Care at the
End of Life

Developmental Issues

• Limited political constituency and advocacy base

• Weak governmental and commercial funding for research that is not aimed at curing disease

• Lack of links between basic science and palliative care researchers

• Low academic priority of end-of-life care

• Minimal ties to established academic units

• Absence of recognized medical specialty and multi-institutional research groups

Ethical Concerns

• Patient ability to provide informed consent

• Potential interference with care

• Potential added burden of suffering

Methodological-Logistical Problems

• Small population base in clinical and organizational studies

• Changing patient health status and prognostic uncertainties

• Conceptual disagreements (e.g., definition of palliative therapy)

• Absence of internationally recognized systems for classifying, assessing, or measuring most symptoms, outcomes, and quality-of-life variables relevant to end-of-life care

• Competing demands for time from direct patient care

• Lack of investigator training in appropriate research techniques

• Lack of methodologies adapted to the special problems presented by end-of-life research



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SOURCE: Adapted from MacDonald, 1993.