New evidence shows consistent patterns of declines of functioning for four different types of dying. Each of the four types requires a distinct array of health care and social services to support the dying patient and family members. According to investigator June Lunney, Ph.D., “A one size fits all model for end-of-life palliative care doesn’t work. People usually assume a terminal illness when thinking about end of life. Yet only 23% of Americans die of cancer, the most common illness with a distinct terminal phase.” Instead, services need to be tailored to match these four trajectories: sudden death; expected death in the short term, from cancer; entry-re-entry deaths, in which people are in and out of the hospital, often for several years; and lingering, expected deaths, such as those caused by frailty or dementia. The study analyzed data from 4,190 participants over the age of 64. For more information, visit http://www.nih.gov/ninr The original article appeared in the May 14 issue of JAMA.
Researchers at the Centers for Disease Control and Prevention published an article last fall describing three roles for public health to take in examining end-of-life issues and in developing a public health agenda for end-of-life care. In End of Life Is a Public Health Issue, the authors suggest that public health professionals develop surveillance measures to study public perception and experience of the end of life, and to develop survey tools that would assess concerns such as quality of life, pain management, and care options. They also recommend that public health programs provide health information based on communication planning strategies that have been applied to other areas. Finally, the authors recommend that public health partner with health care to assist with end-of-life discussions about treatment and preferences. To request a reprint, contact Dr. Jaya K. Rao at http:// www.JGR6@cdc.gov
According to authors of Describing Death in America: What We Need to Know, we have national data about the cause of death and age at death, but no real data on quality, appropriateness, and costs of care; or the burden to informal caregivers. In this new report from the Institute of Medicine, the authors recommend several strategies to collect such data, including establishment of a a new, ongoing National Mortality Followback Survey. The survey would benchmark where we are today, and guide in establishing goals to minimize pain and suffering and maximize the quality of life. Quality measures are important for public accountability, internal quality improvement efforts, and further research on the effects of different approaches to improve outcomes for patients and families. To read the full report online, go to: http://www.nap.edu/catalog/10619.html
On the Hill, advocates for better end-of-life care should watch two bills. The Lifespan Respite Care Act of 2003 (S 538), which would widely promote respite care services, passed the Senate in April and has been referred to the House Subcommittee on Health. The National Pain Care Policy Act (HR 1863) calls for the recognition of pain as a public health problem. Among the bill’s key elements are establishment of a National Center for Pain and Palliative Care Research at NIH along with six regional research centers. It would also create education and training initiatives for professionals, and a national campaign aimed at the general public.