. "3 Quality of Care and Quality Indicators for End-of-Life Cancer Care: Hope for the Best, Yet Prepare for the Worst." Improving Palliative Care for Cancer. Washington, DC: The National Academies Press, 2001.
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Improving Palliative Care for Cancer
appropriate treatment. The use of intravenous fluids, for example, is often viewed as not the “hospice way” to care for actively dying patients. The argument is that it is a natural part of the dying process for persons to decrease their intake of fluids and that symptoms attributable to dehydration can be managed by ice chips and aggressive mouth care (McCann et al., 1994). However, others suggest that hydration through subcutaneous saline injection can ameliorate or reverse agitation in dying persons (Fainsinger and Bruera, 1997).
Despite reports of striking levels of patient distress, reliable and valid tools to measure symptoms are often lacking. For example, many dying persons are unable to report either their pain or discomfort from dyspnea. It will be difficult to document progress unless the necessary tools are developed.
The scientific evidence base of, and current measurement tools for physical symptoms other than pain need further refinement prior to their use for public accountability. For physical symptoms other than pain, existing measures have to be refined, new measurement tools must be developed, research on treatment effectiveness has to be conducted, and guidelines must be formulated. NCI, in collaboration with other federal research agencies, could take the lead in developing this scientific evidence base for the palliation of physical symptoms of persons dying from cancer.
Emotional distress greatly diminishes the quality of life of dying patients and their families. Depression and anxiety inhibit the patient’s ability to experience pleasure and to focus on the conclusion of significant relationships (Block, 2000) and may impair the ability to make critical decisions. From a clinical standpoint, health care workers should recognize and treat emotional distress to enable the patient and family to participate fully in end-of-life decisionmaking and attain a sense of closure in the time remaining before death.
Depression and anxiety, as well as an increased risk of suicide, among patients with cancer and other terminal illnesses have been documented for two decades, but the reported prevalences vary widely, depending on diagnostic criteria and study design (DeFlorio and Massie, 1995). Using a self-report measure of common symptoms, 65 percent of patients with breast, colon, prostate, or ovarian cancer reported feeling sad, and 61 percent reported feeling nervous (Portenoy et al., 1994a). In a study limited to those with advanced cancer, 21 percent of patients reported moderate or severe