NCI could sponsor research with the NIA and AHRQ to study communication of information about risks and burdens of chemotherapy in making treatment decisions with persons whose cancer is expected to be fatal. Consideration could be given to funding a center of excellence in communication regarding end-of-life care. Such a center would address issues such as stopping active cancer treatment and the use of chemotherapy, radiation, and other modalities for palliative intent only.

ASCO and other professional organizations could develop clinical guidelines regarding the point at which physicians should discuss the burdens and benefits of continued chemotherapy, including the presentation of information about hospice and/or palliative care.

Decisions regarding treatment approaches in cancer require consideration of the trade-offs of quality versus quantity of life. With increasing use of capitation, the incentive may be to provide less care. Measurement tools that examine whether treatment decisions reflect informed patient preferences should be developed and validated. Such measures, if validated, could be incorporated into HCFA’s ongoing effort to monitor the quality of managed care.

Proposed Definitions and Conceptual Models of Quality of Care

Dying is a time unlike any other, and more than at any other time, patients’ preferences are central to defining the quality of care. While one patient may choose an experimental chemotherapeutic trial and even continued intravenous (IV) hydration in an inpatient hospice unit, another patient with the same diagnosis may choose aggressive treatment with IV opiates for distress from dyspnea but no chemotherapy. Essential to the quality of care for a cancer patient is meeting the patient’s needs and expectations within society’s imposed constraints.

A previous Institute of Medicine (IOM) report defined quality of care as the “degree to which health services for individuals and populations increased the likelihood of desired health outcomes and are consistent with professional knowledge” (IOM, 1990). This definition implies that conceptual models for quality of care (as well as instruments measuring quality) must be based on both professional knowledge (based on scientific evidence) and informed patient preferences. Most conceptual models have been built either around expert opinion (Emanuel and Emanuel, 1998; IOM, 1997; Lynn, 1997; NHO, 1997; Stewart et al., 1999) or on qualitative data from patients, families, or health care providers Singer et al., 1999; Steinhauser et al., 2000; Teno et al., in preparation). Only one proposed model incorporates both the expert and the consumer perspectives (Table 3-3).

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