Family members most often serve as the primary caregiver for the cancer patient, which may lead to a disruption in family relationships. This burden has been shown to produce emotional and physical disturbances in the caregiver. The appearance of patients’ symptoms, such as fatigue, nausea, and pain, underlines the severity of the disease and its potential mortality, adding significantly to the burden of family members who may feel unable to help the patient get relief. Numerous studies have examined the caregiving burden experienced by the family members of patients with cancer (Carey et al., 1991; Cassileth et al., 1985; Miaskowski et al., 1997a, 1997b; Oberst, et al., 1989; Stetz, 1987).
A family caregiver’s distress is related to the severity of symptoms experienced by the cancer patient. In a cross-sectional study, Miaskowski and colleagues (1997a, 1997b) found that family members of oncology patients with pain report greater tension, depression, and total mood disturbance than family members of patients without pain. Ferrell and colleagues (1991a, 1991b) conducted a qualitative study of 85 family caregivers of cancer patients to describe their perspective toward cancer pain and their role in its management. When asked about their role in managing cancer pain, caregivers reported making treatment decisions such as deciding what medication to give the patient and when to give it. Caregivers expressed their own and their patients’ fears about addiction to pain medication and felt that it was their responsibility to help the patient avoid addiction.
Most of the studies of caregivers have been conducted with white middle-class families. Relatively few studies have focused on the experiences and emotions of minority families of cancer patients, particularly those families with limited financial resources or fragmented health care (Juarez et al., 1998). Limited research indicates that ethnicity and social class do affect how patients, family members, and health care providers perceive illness and, more importantly, how family members and health care providers respond to the multiple needs of the patient (Gonzalez, 1997; Guarnaccia et al., 1992; Sales et al., 1992).
Specific end-of-life issues have been carefully researched. Decisions about advance directives is an example. The SUPPORT database offers a large amount of information about cancer patients’ preferences for cardiopulmonary resuscitation (CPR) and the relationship of this preference to patient characteristics. Haidet and colleagues (1998) analyzed SUPPORT data for 520 patients with colorectal cancer to determine preferences for CPR. Sixty-three percent wanted CPR in the event of cardiopulmonary arrest. Factors independently associated with preference for resuscitation included younger age, better quality of life, absence of lung metastases, and