Improving our care at life's end: making a difference.

Although there are few human experiences as profound and universal as the end of life, we are only beginning to create a health care system that will allow people to die as they wish, with dignity and with as little pain as possible. The challenges to creating that system are attitudinal, financial, clinical, and emotional. Despite increasing public discussion about end-of-life care, many people are uncomfortable thinking about their own deaths or the deaths of those they love. Talking openly about this is even harder. Beyond emotional barriers lie practical ones. Doctors, nurses, and social workers are not trained well in managing pain and addressing the patient's and family's emotional and spiritual needs. Long-time habits of thoughts and action are difficult to change--doctors are focused on curing rather than caring. Hospitals and nursing homes need additional staff and frequently face cutbacks and staff turnover. In addition, care may not be coordinated around patient needs; rather, planning may focus on what Medicare and other insurance policies cover. Financial coverage may be unavailable to support home and community-based care, but is usually available for hospital care. Furthermore, factors unrelated to end-of-life care can influence the provision of these services. For example, my state, New Jersey, has a high number of hospital beds compared with other states, and pressure is exerted to fill them. Therefore, the majority of New Jerseyans die in hospitals, even though surveys show most people would prefer to die in their homes. New data also suggest that the relatively high number of hospital beds has an effect on use of intensive care. A 2002 report of Last Acts, funded by the Robert Wood Johnson Foundation, indicated that New Jersey had one of the highest rates of elderly individuals who spent seven or more days in intensive care during the last six months of their lives (Last Acts, 2002). Although community-based hospice care is more appropriate in most cases and is less costly, the need to fill hospital beds may drive this trend. Other states face unique issues that drive the provision and quality of care. Interest in improving end-of-life care grew during the 1990s in response to legal challenges to assisted suicide laws and a recognition that new strategies were needed to improve the care of people near the end of life. First, the publicized attempts by Dr. Jack Kevorkian to assist in the suicides of seriously ill individuals called attention to the health care system's failure to effectively address pain and suffering. Second, individuals with life-threatening illnesses and their physicians sued their state leaders (in New York State and Washington State) to establish a constitutional right to physician-assisted suicide. In a leading 1997 decision, Vacco v. Quill, the U.S. Supreme Court declined to find a legal right to assisted suicide, but suggested that individuals may have a right to better end-of-life care and pain care (Vacco v. Quill, 1997). Finally, a national hospital project funded by the Robert Wood Johnson Foundation attempted to improve end-of-life decision making and reduce the frequency of artificially supported, painful, and prolonged dying processes. Although the study's interventions, including the use of a skilled nurse to obtain patient wishes, enhance understanding of patient outcomes, and promote palliative care, failed to improve end-of-life care, the study marked a turning point in bringing new attention, professional training, service programs, and research to improve the care of the dying population (SUPPORT Principal Investigators, 1995). Despite the many challenges presented by our health care system, many caring professionals are making a difference through palliative care, an approach to life-threatening illness that emphasizes patient comfort throughout the course of the illness. The most prominent type of palliative care is hospice, which seeks to keep patients comfortable during the final stages of their illness and focus on quality of life. …