While the NMFBS has provided some information about the dying experience, health care providers cannot answer the important question, What will my dying be like? Information about the bereaved family member’s perspective on the quality of care, concerns about pain management, or whether medical care was in accord with the patient’s informed preferences is not included. To address these issues, we must rely on less generalizable studies.
Funding a seventh wave of the National Mortality Followback Survey should be considered. If carried out, it should include data collection to document a surrogate perspective on quality of care with a focus on issues that proxies are known to report accurately—access to care, decisionmaking, advance care planning, coordination of care, and the financial impact on dying persons and families.
Additional research should be conducted to improve the quality of followback reporting (e.g., to examine the best timing of interviews within the constraints of current reporting of death data). Research is also needed to examine the types of people best able to serve as proxies, what they are able to validly report on, the impact of bereavement, and the validity of interviews with family members.
Pain is common among people dying from cancer. Severe pain may signify that death is not far off (Conill et al., 1997; Foley, 1979; Portenoy et al., 1994a; Turner et al., 1996). Cancer pain, itself, can lead to anxiety, depression, and even suicide (Spiegel et al., 1994; Strang, 1992). One study found that requests for physician aid in dying were withdrawn once the patient was appropriately treated for pain (Foley, 1991). The general public is fearful that the discomfort associated with cancer will be “extremely painful” (Levin et al., 1985). Nearly 70 percent of people believe cancer pain can be so severe that a patient considers suicide. Are such concerns warranted?
Multicenter studies in hospitals (Desbiens et al., 1996; SUPPORT Principal Investigators, 1996), outpatient settings (Cleeland et al., 1994), and nursing homes attest to important public health concern with pain assessment and management (Bernabei et al., 1998). In the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT), 22.7 percent of patients reported moderately or extremely severe pain at least half the time during their first week of hospitalization. Bereaved family members reported that more than 40 percent of those who