(Underwood, 1995). Even among the well insured, the costs of end-of-life care can contribute to financial hardship. In one study, more than half of the families involved in the care of a seriously ill family member reported at least one severe burden ranging from loss of family savings, or loss of income, to changes in future educational plans or employment status (Covinsky et al., 1994). One commonly cited financial burden relates to Medicare reimbursement policy. Medicare will reimburse for pain management at an inpatient facility, but not for outpatient oral analgesics. This is a major barrier to adequate pain management for terminal cancer patients who choose to die at home.

An additional barrier to end-of-life care is the absence of a primary care provider. The poor and uninsured may be less likely to have a regular clinician with whom they are comfortable discussing end-of-life care issues.

Patient Factors

Patients dying of cancer often suffer avoidable pain and distress (Cleeland et al., 1994; Passik et al., 1998). Certain patient attitudes or beliefs can act as barriers to good end-of-life care. Stoicism can lead to underreporting of pain, nausea, or depression; concerns about becoming addicted to pain medication or a belief in the inevitability of pain with cancer can contribute to the underuse of pain medication (Ward et al., 1993). Some patients are reluctant to communicate symptoms to their providers for fear of diverting attention from the pursuit of a cure (Ward et al., 1993). Some evidence suggests that these attitudinal barriers may be more prevalent among certain sociodemographic groups (e.g., those with low educational attainment) and certain racial or ethnic minority groups (Cleeland et al., 1997; Rimer et al., 1987; Ward et al., 1993).

Provider Factors

Aside from financial barriers, most impediments to adequate end-of-life care are associated with health care providers. For example, although there are effective pharmacological strategies to manage pain, providers consistently undertreat pain (Levin et al., 1998; Levy, 1996; McCaffery and Ferrell, 1995). In one study, 42 percent of patients with recurrent or metastatic cancer were inadequately managed for their pain (Cleeland et al., 1994). The elderly, women, and members of racial or ethnic minority groups are more likely than others to have poor pain relief (Bernabei et al., 1998; Cleeland et al., 1994, 1997). Physicians report concerns about management of side effects, patient tolerance of analgesia, and regulatory scrutiny when prescribing narcotics as barriers to effective pain management (Van Roenn et al., 1993). Simple measures, such as attaching a patient-completed pain assessment sheet to the front of the medical chart, can increase effective pain management (Trowbridge et al., 1997).

Physicians also do not adequately identify signs of depression among patients with cancer. In one study, only 13 percent of patients with evidence of moderate to severe depression were identified by their physicians (Passik et al., 1998). Providers may not have clear guidance on how to manage terminal cancer care. Guidelines are available to assist in the management of cancer-associated pain (e.g., from the Agency for Health Care Policy and Research), but there are



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement