News and Trends from the End of Life
June 1, 1998
News and Trends from the End of Life
A new on-line journal devoted to improving end-of-life care is now under construction and should be fully operational in June, says its senior editor, Mildred Z. Solomon, EdD, director of the Center for Applied Ethics and Professional Practice at the Education Development Center in Newton, MA. Innovations in End-of-Life Care, an international journal and on-line forum of leaders in end-of-life care, is supported by the Robert Wood Johnson Foundation as part of the foundation's Last Acts campaign Task Force on Institutional Innovations, although paid subscriptions will also be sought.
The Innovations journal is now seeking submissions of innovative, exemplary ways of caring for dying patients and their families, which will be peer-reviewed and selected for inclusion in the journal and accompanying print compendiums. (See invitation letter and application form, inserted into this month's issue of Hospice Management Advisor.) The journal's staff will seek out the story behind the submitted innovation by interviewing the applicants and including the information in a brief, descriptive format on the Web site. Some innovators will also be invited to discuss their work in on-line forums. A broad range of end-of-life issues will be covered, including pain and symptom management, advance care planning, ethics and legal issues, bereavement, and spirituality.
Solomon urges hospices with interesting stories to consider submitting their innovations. "Part of the reason for the journal's existence is for people who are doing important work but haven't necessarily reached the necessary `p' values for valid quantifiable research, and thus are kept out of academic journals. They shouldn't be shy about submitting to us just because they haven't done a randomized controlled trial. Of course, we'll favor innovations that have some evidence, but they can just point to some structures or processes and tell us how they know they are making a difference. Why do they think what they're doing matters?"
The journal aims to have an international flavor, and to organize on-line forums where end-of-life professionals can share their experiences with each other and ask questions of experts who are making advances in this field. "It's a great opportunity to feature hospice's expertise, to encourage more referrals to hospice, and for others to learn from hospice's expertise," Solomon adds. For more information, contact Elizabeth Collins (e-mail: [email protected]); call EDC at (617) 969-7100; or visit the new Web site at: www.edc.org/lastacts/jrnlhm.html.
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A new $11.25 million grant program from the Robert Wood Johnson Foundation is designed to encourage state and community groups to work together to improve care of the dying. Grants will be awarded to organizations working to bring about statewide policy change and encouraging grass-roots community dialogue on the issues. Myra Christopher, CEO of the Midwest Bioethics Center in Kansas City, MO, which has spearheaded just such a communitywide end-of-life dialogue in the Kansas City metro area, will be the national program director.
The program's intent is "to fund states and communities that will work together toward systems of high-quality comprehensive end-of-life care," states the foundation's call for proposals, released in April. The deadline to apply for the first round of awards is July 7, while a second round will be held next year.
This program will fund projects aimed at: removing barriers to good care at the end of life; developing policies and implementing practices that promote excellence in care; creating public understanding about end-of-life care choices; soliciting and responding to public priorities; and monitoring the impact of these efforts. Ultimately, success will require the public and health care providers working together "to develop a comprehensive vision and strategy for improving end-of-life care that serves diverse communities," the call for proposals states.
Successful applicants will be state agencies, universities, associations or other bodies that can garner support for and manage a broad-based initiative. Selection criteria include: evidence of a real partnership; the degree to which the proposed project will engage and stimulate change in the organizations the leaders represent; the partners' willingness and capacity to undertake change in multiple areas; the strength of the mechanisms proposed to enable a discourse among policy-makers and the public about changes needed; and the project's ability to monitor the impact of its changes. Grants will average $450,000, with some money available for planning grants. Matching contributions from other sources, equaling at least one-third of the foundation grant, are also required.
"The program underscores the importance of collaboration, both at a community level, through grass-roots involvement, and at a state level through state organizations that can create health policy," says Victoria D. Weisfeld, MPH, the foundation's senior communication officer. "Hospices, obviously, have an important role to play in many of these issues. They have paved the way in many states."
To obtain an application package for a grant from Community-State Partnerships to Improve End-of-Life Care, contact Myra Christopher, National Program Director, c/o the Midwest Bioethics Center, 1021-1025 Jefferson St., Kansas City, MO 64105; telephone: (816) 842-7110; fax: (816) 842-3440; or e-mail: [email protected].
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