National Institute of Health--Last year, a study from the National Cancer Policy Board urged NIH to address a range of symptoms cancer patients experience, especially problems such as pain, depression and fatigue. The Policy Board recommended that NIH devote more research to study these symptoms and barriers to effective treatment. An NIH-sponsored State-of-the-Science conference held in July brought together experts to address key questions in this area. Panel chairman Dr. Donald Patrick, professor and director of the social and behavioral research program in public health at the University of Washington at Seattle said, "Currently, cancer-related pain, depression, and fatigue are undertreated and this situation is simply unacceptable--there are effective strategies to manage these symptoms and all patients should have optimal symptom control." For a full summary of the evidence report on this issue, go to:
Journal of American Geriatric Society--Analysis of a random sample of Medicare claims data for Medicare beneficiaries between 1993 and 1998 revealed four key trajectories at the end of life: sudden death, terminal illness, organ failure, and frailty (JAGS 50:1108-1112, 2002). Of the 7,966 deaths in the sample, 92% of decedents fit into one of these classifications. Each group had distinct patterns of demographics, care delivery, and Medicare expenditures. Frailty accounted for almost half of all deaths, while sudden death claimed only 7%. The frail group included patients with Alzheimer's disease, dementia, stroke, pneumonia, and other problems. These patients are likely to need nursing home care, assistance with daily activities and, in some cases, round-the-clock supervision--a comprehensive system of care not easily found. To learn more about what an improved system could look like, visit our website and read our legislative agenda.
Washington, DC--On Sept. 26, HHS announced $7 million in funding for innovative projects to support family caregivers. The grants are to be used to develop and continue successful programs to assist caregivers, including older relatives. Secretary Thompson said, "All too often, a family caregiver seeks assistance only when a crisis occurs. These grants are allowing us to test new and promising ways of supporting families so that they can be better prepared to care for their loved ones if the need arises." Of the 39 grants, 11 are to new programs; all are being awarded as part of the National Family Caregiver Support Program. Advocates for better end-of-life care, including better care for caregivers, may be interested in learning more about programs in their communities. For details about grantees, go to:
Washington, DC--The Department of Veterans Affairs has selected six VA facilities as training sites for the new interprofessional palliative care fellowship program. The sites are located at: Palo Alto, CA, West Los Angeles, CA, Portland, OR, San Antonio TX, Milwaukee, WI and Bronx, NY. The Palo Alto site will serve as the hub-site for the program. The fellowship provides advanced training in palliative care for physicians, nurses, social workers, psychologists, chaplains and pharmacists. Active recruitment is currently underway. "We are very excited about this fellowship program," said James Hallenbeck, hub-site Director. "VA historically has been a leader in the field of geriatrics and now stands ready to adopt a similar leadership role in palliative care. The fellowship program is an important step in this direction." This fellowship is unusual in two regards. It is the first such program to offer advanced training to clinicians practicing palliative care across a wide spectrum of disciplines. The fellowship is also unique in that each training site must have an education dissemination plan, in effect requiring each site to 'spread the word' about the importance of palliative care. More information about the fellowship program can be obtained at
http://www.va.gov/oaa/fellowships/palliative.asp
University of Wisconsin--The Pain & Policy Studies Group (PPSG)/World Health Organization Collaborating Center, has made additions to its website. Its 2000 publication, Achieving Balance in National Opioids Control Policy: Guidelines for Assessment, is available in English, French, Italian, and Spanish. The Guidelines explain why national governments are obligated to ensure adequate availability of opioid analgesics, and provides 16 guidelines and a checklist that governments and health professionals can use to assess "balance" in the national opioids control policies of any country. For details, go to:
http://www.medsch.wisc.edu/painpolicy/publicat/00whoabi/00whoabi.htm
Washington, DC--Analyzing disease management is integral to the efforts of the Centers for Medicare and Medicaid Services' (CMS) to improve and strengthen Medicare and to improve the health care services provided to Medicare beneficiaries, Deputy Administrator Ruben King-Shaw, Jr. told a House Subcommittee. Congresswoman Nancy L. Johnson (R-CT) said, "As Congress modernizes and strengthens Medicare, we must recognize the significant role disease management can play in improving seniors' lives. Unfortunately, this is yet another area in which Medicare significantly lags behind the private market. By encouraging widespread incorporation of disease management...we will help improve patient outcomes while reducing health costs."
For hearing transcripts, go to:
http://waysandmeans.house.gov/health/107cong/hl-15wit.htm
by Laura M. Schmidt
To help hospice and palliative care professionals navigate the current changing health care arena, experts at a conference focused on windows of opportunity as a way to leverage success for the future. Myra Christopher, president and CEO of the Midwest Bioethics Center and director of the Community-State Partnerships to Improve End-of-Life Care told participants, "End-of-life care is a community event and issue." Christopher said that the first phase of the current end-of-life movement focused on a growing awareness of issues related to death and dying, spearheaded largely by the work of Elizabeth Kubler-Ross. A second, data-driven phase produced results that found their way into the power structures of the health professions and the public policy arena. Being on the "cusp of the third phase," Christopher said that now is the time to focus on "izing" the movement by institutionalizing, systematizing, routinizing, and normalizing the best and most effective activities, practices and models.
"Our challenge is to take all of these wonderful models and programs and get them to the community level," Christopher told the participants. She suggested that participants could reach this goal by becoming involved with organizations such as the Duke Institute on Care at the End of Life, the National Hospice and Palliative Care Organization (NHPCO), and the newly formed Rallying Points, a Robert Wood Johnson Foundation initiative aimed at empowering community coalitions. The conference, held last spring, was sponsored by NHPCO and Duke Institute on Care at the End of Life.
The resurgence of religion in today's society provides another opportunity for advocates for better end-of-life care. "We have to find ways to strengthen our relationship with faith communities," said Gwendolyn London, M.Div., D.Min., of the Duke Institute for End of Life Care. "And we have to make sure that our efforts come across as being sincere and are not perceived as simply marketing hospice services." As part of this effort, the Duke Institute is developing a modular curriculum for clergy and lay caregivers so that faith communities can bring end-of-life issues to their own constituencies. "One of the most important things we can do is to raise end-of-life issues to the same level of importance of policy and research," said Rev. London.
Access to hospice services is key issue, especially for minority groups. Citing the Institute of Medicine's 2002 report on "Unequal Treatment: Confronting Disparities in End-of-Life Care," Darryl Crompton, J.D., M.P.H., of the Tuskegee University National Center for Bioethics in Research and Healthcare, said, "We must begin talking about the implications of the report with others in the field." This would be a step toward making a commitment to diversity so that hospice could address issues related to all ethnic and minority groups. One strategy would be to engage community residents in all phases of research, such as data gathering, analysis and outcomes.
Noting that "hospice is not only a philosophy, but it is also a business model," Thomas Hoyer, M.B.A., director of Chronic Care Policy Group at CMS said that hospices "should participate in other medical systems," such as nursing homes, so that the hospice concept can be moved into other health care arenas.
For details on the Community-State Partnerships Program, go to:
http://www.midbio.org/npo-about.htmFor more on the Duke Institute on Care at the End of Life, go to:
http://www.iceol.duke.edu/index.pl
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