Issues of Access and Variability in Health Care at the End of Life |
The national debate about end-of-life care typically focuses on choices about treatment options and about who has the right or expertise to make the choices. This debate assumes that people have options about their care. Although the medical system in the United States offers excellent care choices, the options are largely available only for those who have money or are insured. Individuals who do not have access to private health care insurance often suffer from insufficient and/or poor quality care. Most of the uninsured are older women, children, and ethnic minorities. Access to life-extending medical technology is similarly a function of resources. Higher income individuals are more likely to have a private attending physician, which is related to maintenance of life-sustaining care (Mishara, 1999). As noted by Field and Cassel (1997), "people may have the theoretical right to make their own medical choices, but many do not have the financial access to minimal care necessary for implementation of those choices" (p. 48). It should be noted that concerns about costs also influence the preferences of individuals and family members about life-extending measures (Covinsky et al., 1996).
Even when dying people have access to medical care, the quality of care is highly variable and less than desirable. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT Principal Investigators, 1995) conducted from 1989 to 1994 is the most massive research effort to date associated with the process of dying in America. The study tracked some nine thousand people with various serious and terminal illnesses during the final stages of their life. It also included a large slice of the medical establishment, involving interviews with some 1600 physicians, 500 nurses, and many other health care professionals at numerous prestigious medical institutions. In Phase I of the study, researchers examined how people were treated when they entered the hospital, how medical decisions were made, and what happened to them and their families during the acute treatment period and for six months afterward. Findings from the study were quite dramatic:
- Half of the people who were still conscious had moderate to severe pain at least half of the time before they died;
- More than half of the doctors in the study did not know about their patients' preferences for life-sustaining treatment;
- Nearly 40% of the individuals spent at least 10 days in an intensive care unit.
In Phase II of the study, a number of interventions were put in place that a large panel of experts on end-of-life medicine and law thought would change treatment patterns and make the process of dying more comfortable. In the end, those patients who received the interventions were treated the same as those patients for whom no such efforts were made.
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References
Covinsky, K. E., Landefeld, C. S., Teno, J., Connors, A. F., Jr., Dawson, N., Youngner, S., Desbiens, N., Lynn, J., Fulkerson, W., Reding, D., Oye, R., & Phillips, R. S. (1996). Is economic hardship on the families of the seriously ill associated with patient and surrogate care preferences? Archives of Internal Medicine, 156, 1737-1741.
Field, M. J., & Cassel, C. K. (Eds.). (1997). Approaching death: Improving care at the end-of-life. Washington, DC: National Academy Press.
Mishara, B.L. (1999). Synthesis of research and evidence on factors affecting the desire of terminally ill persons to hasten death. Omega, 39, 1-70.
SUPPORT Principal Investigators. (1995). A controlled trial to improve care for seriously ill hospitalized patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT). JAMA, 274, 1591-1598. [Erratum, JAMA, 275, 1232 (1996).]
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