may increase the intensity of physical symptoms. For example, depression and anxiety may increase the experience of pain, and anxiety can increase dyspnea. Conversely, pain and dyspnea increase anxiety and depression.
Prevalence of symptoms at the end of life that cause substantial distress has been identified by the Memorial Symptom Assessment Scale (Portenoy, 2000). Pain, fatigue, nausea and vomiting, and dyspnea are among the most frequently occurring symptoms that reduce quality of life. Others are cachexia, bladder and bowel dysfunction, sleep disturbance, pruritis, constipation, diarrhea, and pressure ulcers (Mercandante, 1994, 1997; Ripamonti, 1994). Anorexia is exceedingly common and emotionally laden, causing patients and families great distress because of the fear that not eating is the cause of cachexia. Patients in the final days of life have diminished hunger and thirst, and oral, parenteral, and enteral force feeding may actually increase suffering (McCann et al., 1994). Development of clinical guidelines for each of these symptoms in end-of-life care is important. Practice guidelines are being developed for anorexia (D.Cella, personal communication).
Symptom management in special populations is a particular problem. In patients with dementia, chronic mental illness, delirium, or deficits in ability to communicate, assessment of the sources of discomfort and the adequacy of palliative interventions is especially problematic. In these cases, clinical experience with comparable situations often must guide palliative care; for example, dosing pain medications based on average needs and then assessing nonverbal cues are recommended. Given the high incidence of terminal delirium and the frequent progressive impairment of cognitive functioning in the final stages of life, palliative care guidelines must address the needs of those patients who cannot speak for themselves to express troubling symptoms.
Achieving effective pain management has been a priority over the past decade. The American Pain Society (APS), AHRQ, the World Health Organization (WHO), and the NCCN guidelines provide algorithms for decisionmaking in pain management (AHCPR, 1993; APS, 1995; McGivney, 1998; WHO, 1998) (see Table 7-2). Problems remain in implementation; many patients cope with needless suffering. Pain is one of the most prevalent symptoms across terminal illnesses, affecting more than a third of patients. It is also the source of great fear as many patients anticipate final days of agony. Beyond the devastating experience of the symptom itself, pain impairs psychosocial functioning, causes enormous psychological distress (anxiety and depression), and limits patients’ capacity for enjoyment and finding meaning in their final days. Studies show pain control remains a