Dyspnea and Other Symptoms

Patients, family members, and health care providers report that dyspnea is one of the most burdensome and difficult symptoms to treat in the last days of life (Dudgeon and Rosenthal, 1996; Farncombe, 1997; Hockley et al., 1988; Kuebler, 1996; Nelson and Walsh, 1991; Ripamonti and Bruera, 1997; van der Molen, 1995). Between 21 percent and 89 percent of dying people report directly (Donnelly and Walsh, 1995; Dudgeon et al., 1995; Hay et al., 1996; Hopwood and Stephens, 1995; Portenoy et al., 1994; Roberts et al., 1993; Vainio and Auvinen, 1996) or are observed to have difficulty breathing in the final phase of life (Addington Hall and McCarthy, 1995b; Coyle et al., 1990; Desbiens et al., 1997; Edmonds et al., 2000; Fainsinger et al., 1991; Goodlin et al., 1998; Higginson and McCarthy, 1989; Hockley et al., 1988; Lynn et al., 1997; Marin et al., 1987; Muers and Round, 1993; Reuben and Mor, 1986; Robinson et al., 1997. Similar to worsening pain, increasing dyspnea implies a shorter survival time. Half of all lung cancer patients presenting to an emergency room with dyspnea die in the following month (Escalante et al., 1996).

Research has shown that unlike pain, dyspnea persists as a troublesome symptom even in patients receiving palliative care. Both pharmacological and nonpharmacological interventions are limited (Higginson and McCarthy, 1989; Ripamonti, 1999) (although a recent trial suggests an important role of nonpharmacological interventions using relaxation techniques; Breitbart et al., 1995). This is not unexpected, because for many cancer patients, lung tissue is replaced with nonfunctional tumor tissue such that the patient follows the clinical course of a person with restrictive lung disease.

In addition to the distressing symptoms of pain and dyspnea, cancer patients often endure a constellation of other symptoms. More than 90 percent of people with advanced cancer who are close to death have more than three distressing symptoms (Donnelly and Walsh, 1995). Weakness afflicts between 51 percent and 88 percent of dying cancer patients, and at least one-quarter have one or more gastrointestinal symptom, including nausea, vomiting, and anorexia (Conill et al., 1997; Donnelly and Walsh, 1995; Hockley et al., 1988; Portenoy et al., 1994b; Turner et al., 1996; Vainio and Auvinen, 1996). Confusion, which is often devastating to family members, is found in between 8 percent and 85 percent of dying cancer patients (Breitbart et al., 1995; Conill et al., 1997; Donnelly and Walsh, 1995; Hockley et al., 1988; Turner et al., 1996; Vainio and Auvinen, 1996).

With the exception of pain, interventions for managing these symptoms are not well characterized and the tools themselves are probably inadequate. In addition, there are disagreements among professionals about



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