provide the desired level of physical comfort and emotional support;
promote shared decisionmaking, including advance care planning;
focus on the individual patient by facilitating situations in which patients achieve their desired level of control, staff members treat patients with respect and dignity, and patients are aided in achieving their desired levels of closure; and
attend to the needs of caregivers for information and skills in providing care for the patient, and provide emotional support to the family before and after the patient’s death.
In the ideal quality-monitoring system for cancer, guidelines and proposed quality indicators should be strongly linked. Guidelines should be based on both normative and empirical research. A quality indicator can measure information about the structure of the health care institution (e.g., availability of certain services, existence of policies), processes (i.e., interactions of health care providers, patients, and family), and outcomes (i.e., effectiveness of treatment). Currently, most quality indicators measure either structure or processes of care. Outcome measures are intuitively more attractive, but they are more difficult to apply because of our limited ability to adjust for differences in patient characteristics and the relatively small numbers of people with a particular condition treated at institutions each year (Brook et al., 1996). One argument in favor of process data is that they are a more sensitive measure of quality because adverse outcomes do not occur every time there is an error in the provision of medical care (Brook et al., 1996). Also, important outcomes—both positive and negative—often appear months or even years after care has been given. Quality indicators based on measures of structure or process, however, are only as good as their predictiveness for outcomes of importance.
NCI and AHRQ could fund research to elucidate the interrelations of structure, process, and outcomes of care, in order to develop valid quality indicators.
Surveys and chart abstraction tools have been designed to examine the quality of care of the dying for purposes of quality improvement and research. SUPPORT used both chart abstraction tools (examining reported patient involvement in decisions and the point at which a decision was made) and interviews with patients and family members. Other tools have been developed that examine the documentation regarding pain management (Weissman et al., 2000).
SUPPORT demonstrated that a majority of seriously ill patients cannot be interviewed (Wenger et al., 1994). As a result, the research choice be-