LIFEline November, 2001
(Living Initiatives For End-of-Life Care)
The LIFE Project convened its annual Project Partners Meeting on Friday, October 26 in Topeka. Eighty-five people attended the statewide session to learn more about LIFE Project initiatives and Project Partners’ efforts underway throughout the state. The packed two-hour agenda drew spontaneous applause from audience members who sat in amazement and appreciation of the work being done in our state by so many different individuals and organizations.
Ø Donna Bales, President/CEO of the LIFE Project, opened the meeting with an explanation of the LIFE Project’s consumer information piece on advance care planning. The theme for the Project’s second issue of A Design for Change is Advance Care Planning: Do it for those you love!
Ø Don Reynolds, Midwest Bioethics Center, is working on behalf of the LIFE Project to address Kansas House Bill 2469 as it applies to guardianship issues.
Ø Diane Glynn with the Kansas State Board of Nursing followed with a report on the pain management guidelines that were issued by her organization in July. She noted that the Kansas State Board of Pharmacy, Kansas State Board of Healing Arts, Kansas Dental Board, and the Kansas State Board of Nursing are considering a joint statement on pain.
Ø Sandy Kuhlman, Hospice Services, Inc. in Phillipsburg, and Jan Brandom, LIFE Project Manager, gave an update on the Public Engagement Task Group. They unveiled the newest LIFE Project tool, a 15-minute video titled “Making Choices,” which emphasizes the importance for all Kansans to engage in advance care planning. A representative from each of the Caring Communities was given a copy of the video. Additional copies of the “Making Choices” video will be available soon through the Project Office for a nominal fee. Please contact Jan Brandom to order yours.
Reporting on the grassroots activities of the Caring Communities of Kansas, the two highlighted how other LIFE Project tools and resources are being utilized across the state. In addition to promoting the Moyers PBS series, On Our Own Terms, in the fall of 2000, the Caring Communities have distributed thousands of copies of Issues 1 and 2 of A Design for Change and have encouraged local newspapers to run the 15-week series, Finding Our Way: Living With Dying in America. Many communities have also engaged in local activities to promote the series.
Ø Harriet Lange, President/Executive Director of the Kansas Association of Broadcasters, provided an update on how KAB members are supporting the LIFE Project by airing public service announcements on both radio and television. To date, KAB members have contributed over $120,000 in airtime. Our sincere gratitude goes out to all television and radio stations partnering to advance our goals.
Ø Also on hand was Maren Turner, State Director of AARP Kansas, who shared how AARP is using the “Caring Conversations” program in workshops throughout Kansas.
Ø The report from the Professional Education Task Group was initiated by Gary Doolittle, MD, Director of Telemedicine Services at the University of Kansas Medical Center. Doolittle furnished details of the past, present and future plans of the EPEC (Education for Professionals in End of Life) training being offered by KUMC.
Ø Cathy Pimple, Assistant Professor at Emporia State University, followed with an announcement of plans being developed for an ELNEC (End-of-Life Nursing Education Consortium) “train-the-trainer” course. ESU, Kansas State Nurses Association and Newman Regional Health Center Hospital in Emporia will co-sponsor the event April 19-20, 2002, in Emporia. The ELNEC curriculum, according to Nadereh Nassari, RN from Hospice Care of Douglas County, is a very comprehensive program for practicing nurses and nurse educators on end-of-life care.
Ø The new Director of Programs at the Kansas Humanities Council, Julie Mulvihill, provided details about Stories at Work and how this workshop helps health care professionals increase their understanding of people’s needs and their desire to find personal meaning at the end of life. Dianne Michaud, Program Director at Meadowlark Hospice in Clay Center, backed up the program benefits by sharing her experience hosting the seminar in her community and their plans to host the program a second time.
Ø Bob Twillman, PhD, Pain Management Program Director at KUMC, gave a short update on the LIFE Project pain initiatives. In addition to informing the group of the LIFE Project’s willingness to provide speakers, Dr. Twillman encouraged the use (by both health care professionals or consumers) of the Pain Hotline (913-588-3692) he oversees.
Ø The LIFE Project Pain Protocol Project was also highlighted during this segment of the meeting. Stacie Ogborn, Project Coordinate, explained the processes of conducting the 15-month pain demonstration project and what data is being collected, while Debra Zehr, Vice President of Kansas Association of Homes and Services for the Aging, detailed how the project originated through collaboration with other Project Partners, including the Kansas Hospital Association and the Kansas Health Care Association. Representatives from three of the fourteen facilities participating in the project gave reports of the work being done in their respective organizations. Karen Baier from Cushing Memorial Hospital, Leavenworth, shared a new patient and family pain guide with the group. Deanna King and Judy Harmon from Neosho County Regional Memorial Medical Center, Chanute, recited a real-life story about how a patient’s pain was effectively managed at the end of a long struggle with cancer. And Bev Johnson from Friendly Acres Retirement Community in Newton described the non-pharmacological interventions being utilized in her facility to keep residents comfortable.
Ø The final report of the morning was given by Chip Wheelen, Executive Director of the Kansas Association of Osteopathic Medicine. The KAOM, in collaboration with the American Osteopathic Association, is celebrating National Osteopathic Medicine Week, November 11-18, whose theme is “Focus on End-of-Life Care.”
Ø Myra Christopher, Director of the Community-State Partnerships to Improve End-of-Life Care, closed the session by congratulating the LIFE Project staff and partners on their outstanding progress. She urged that we continue working together, because we have so much work left to do.
Ø Immediately following the Project Partner Meeting, the LIFE Project hosted a luncheon and statewide session of the Caring Communities of Kansas. Sharing how their communities are promoting the message of improved end-of-life care were Jane Bemis from Great Bend and Dianne Michaud from Clay Center. Jan Brandom also distributed handouts from two additional communities, Newton and Hays.
Ø Deb Altus, PhD, Assistant Professor of Human Services at Washburn University, presented creative tools for public engagement and education, including art and theatre projects and sample school and faith community surveys.
Ø During a concurrent afternoon session, Senator Sandy Praeger met with members of the Public Policy Task Group in a guardianship workshop.
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· Join the Last Acts “Ask the Expert” teleconference on Friday, November 16 at 11:00 am (EST). Dr. Timothy Quill, MD, professor of medicine, psychiatry and medical humanities at the University of Rochester, will address some of the more difficult conversations that arise when patients become seriously ill including:
- How to bring up discussions about palliative care earlier in the disease?
- How to talk about the prognosis?
- How to respond when a patient expresses a desire to end his or her life?
All Last Acts members are encouraged to participate. Please RSVP by email Michelle Weber at Stewart Communications at michellew@stewcommltd.com by noon on November 14. The call-in number, agenda and discussion materials will be sent to you prior to the call.
· The American Osteopathic Association and the Kansas Association of Osteopathic Medicine will celebrate National Osteopathic Medicine Week, Nov. 11-18. This year’s national focus is “End of Life Care.” Issues being addressed on the state and national level include advance directives, organ donations, caring for children at the end of life, managing pain effectively, caregiving, spiritual and cultural considerations, and more. Please log on to their website at http://www.aoa-net.org/AOAGeneral/NOMWeek/nomweek.htm for more information.
· Friendly Acres Retirement Community in Newton, Kansas, was highlighted in the Fall 2001 issue of “Kansas Connections,” a Rural Health Education and Services publication of KU Medical Center. Friendly Acres’ multi-sensory therapy center, or “Snoezelen Room,” was the focus of the article. The facility boasts the first ever Snoezelen Room west of the Mississippi and the second to be used in a retirement setting. Contact Nancy Law or Bonnie Estell in Newton for more information, (316) 283-4770. To read past issues of “Kansas Connections” go to http://ruralhealth.kumc.edu/ksconn/index.html.
· The 15-week newspaper series, “Finding Our Way: Living With Dying in America,” continues to be utilized by newspapers across Kansas. The series, underwritten by several organizations, including Knight-Ridder Tribune News Service, is free to all US newspapers and covers such issues as pain, widowhood, advance directives, last rites, caring for aging parents and partners, grief, violent death, losing a child, and others.
The underwriters have recently lifted the embargo and are encouraging publishers to run any or all of the articles in any order deemed appropriate for individual publications. Articles may be previewed at www.findingourway.net, and paginated versions can be downloaded at www.krtdirect.com/dying.
It is not too late to run the series! We urge you to contact your local publishers and encourage them to include as much of the series as they can.
Our appreciation goes out to the Kansas area newspapers that are running the series and/or local stories:
Lawrence Journal-World (Lawrence, KS)
Hays Daily News (Hays, KS)
Clay Center Dispatch (Clay Center, KS)
The Western Star (Coldwater, KS)
Kiowa County Signal (Greensburg, KS)
Edwards County Sentinel (Kinsley, KS)
Kiowa News (Kiowa, KS)
Barber County Index (Medicine Lodge, KS)
The Newton Kansan (Newton, KS)
Pratt Tribune (Pratt, KS)
The Protection Press (Protection, KS)
St. John News (St. John, KS)
Stafford Courier (Stafford, KS)
The Kansas City Star (Kansas City, MO)
Manhattan Mercury (Manhattan, KS)
Oskaloosa Independent (Oskaloosa, KS)
Valley Falls Vindicator (Valley Falls, KS)
The Southwest Daily News (Liberal, KS)
If your community newspaper is running or has run any part of the series, and their name is not listed above, please let us know.
· The LIFE Project has distributed 15,000 copies of Issue #2 of A Design for Change, and a second printing has just arrived at the Project office. The newsletter is ideal for distribution to Kansas consumers interested in completing an advance directive. If your organization would like additional copies of the publication, please contact June Miller at the Project office: (316) 263-6380 or by email: june@lifeproject.org.
· Just added to the website: "Consumer's Tool Kit for Health Care Advance Planning." This complete guide, created by the American Bar Association, contains a variety of self-help worksheets, suggestions, and resources. There are 10 Tools in all, each clearly labeled and user-friendly. To download the Tool Kit go to www.lifeproject.org/_cr_abatoolkit.htm.
UPCOMING EVENTS: For a complete listing of upcoming seminars, conferences and courses being offered on end-of-life or related issues, please visit our website at www.lifeproject.org/_news_calendar.htm.
L signifies event of LIFE Project Partner and/or LIFE Project.
NOV. 16 Last Acts “Ask the Expert” teleconference on Friday, November 16 at 11:00 am (EST). Dr. Timothy Quill, MD, will address some of the more difficult conversations that arise when patients become seriously ill. Email Michelle Weber at Stewart Communications for more information: michellew@stewcommltd.com.
Nov. 29/30 L The Kansas Funeral Directors Association presents a Caregiving Seminar, “Taking Care of Yourself and Those You Serve in Times of Turmoil.” Internationally recognized speaker and nationally certified grief counselor, Darcie Sims, of Grief, Inc., will facilitate the workshops. The workshops will be held November 29 from 11:30-2:30 at the Wichita Marriott, and again on November 30 at the Hays Holidome. Cost is $20. Please call KFDA at (785) 232-7789 for registration information.
DEC. 7 L Johnson County Community College will conduct a continuing education seminar called “Pain Management: Integrating Complementary Therapies into Traditional Regimens.” Seven contact hours are available for this workshop. Contact JCCC at (913) 469-3811 for details or log on to the website: www.jccc.net/acad/cip/cesched/fall2001/wkhealth.htm.
Feb. 21-23 The Center to Advance Palliative Care (CAPC) will host its first 2002 training session, “Planning a Hospital-Based Palliative Care Program” in Tampa, Florida. To learn more about this educational opportunity, please call (212) 241-9090.
April 19-20 L Newman Regional Health and the Kansas State Nurses Association will jointly sponsor an ELNEC (End-of-Life Nurses Education Consortium) “Train-the-Trainer” course. Advance registration is $70 for the course (10 CE’s provided). Please contact Cathy Pimple at ESU for additional information: 620-343-6800, ext. 5648.
* If you have any announcements to add to our calendar, please forward them to Stacie Ogborn by the 10th of the month: LIFE Project, 1901 University, Wichita, KS 67212, Fax # (316) 263-6542, or submit them by email to: stacie@lifeproject.org.