Updates from the Kansas LIFE Project

·    The LIFE Project website at www.lifeproject.org was launched prior to the Moyers series.  Truly a work in progress, the website will be monitored and updated regularly by LIFE Project staff over the next weeks and months.  Detailed links for each of the Caring Communities are slated for introduction onto the website later this fall.  Other publications, such as LIFE Line, may also be uploaded at a later date.

·    Eighteen volunteers from the Caring Communities braved the heat, dust, wind, and chaos to help out the LIFE Project at the Kansas State Fair in Hutchinson September 8-17.  Approximately 400 surveys were filled out by fairgoers who visited the KU Med Center booth.  Results of those surveys will be available later this year.  Although most of the volunteers reported that the LIFE Project was received warmly by the general public, some felt that this was not the most ideal venue to get our message out.  The input we received from the volunteers will be very useful in helping us determine what, if anything, we should do differently next year.

·    The PBS special, On Our Own Terms:  Moyers on Dying, generated considerable press coverage across the United States.  According to Business Wire, 19 million viewers watched the four-part series, which premiered on Sept. 10 and concluded on Sept. 14.  The series posted unusually high public television ratings in communities across the country, reaching a 7.3/13 share in San Francisco, a 4.7/7 share in Milwaukee, and a 5.2/10 share in Seattle.

Many newspapers and magazines featured stories on end-of-life issues, including a Time magazine cover story.  The Moyers outreach website, www.pbs.org/onourownterms, which will remain active for three years, exploded with activity following the series.  Thousands of Americans shared their personal stories and praised the series through the site.

Across Kansas discussion groups were held at local libraries and schools, announcements were included in church bulletins, and press releases were published in some local newspapers.  For a complete list of activities involving the Caring Communities of Kansas, please go to the LIFE Project website at www.lifeproject.org and click on LIFE’s Latest News and Events, then click on Caring Communities and click on the October newsletter.

·    During the broadcast of the Moyers series on PBS, the LIFE Project HelpLine was staffed by volunteers from Kansas Health Ethics, Hospice Care of Kansas, Central Homecare & Hospice, Inc., Hospice of Reno County, Inc., and Hospice Inc.   The temporary phone bank was set up at Hospice Inc., whose expertise, generosity, and patience is greatly appreciated.  The phone bank volunteers were able to watch the nightly broadcast thanks to a cable hookup provided by Cox Communications.   The phone bank received 68 calls over the four nights of On Our Own Terms for an average of 17 calls per night with most of those coming in during the half hour period after each segment was broadcast. 

In the days and weeks following the broadcast, the HelpLine has logged dozens more calls from around the state.  The majority of callers have been eager to voice their appreciation for the Moyers series and the information it provided.  Requests for pamphlets on hospice care, advance directives, pain management and bereavement have been the most frequent, and 28 individuals have been added to our mailing list as a result.

Thank you to all the volunteers who worked late into the night following each episode to answer calls!

·    The Pain Management Work Group held a meeting on September 19 in Topeka.  Drafts of the long-term and acute care resource training manuals were reviewed.  The group plans to conduct a training event in April in Wichita.

·    LIFE Project partners testified at the Health Care Reform Legislative Oversight Committee in Topeka on October 18.  Those presenting testimony at the hearing were Donna Bales, Director, LIFE Project; Mercedes Bern-Klug, Social Work Researcher, Center on Aging at Kansas University Medical Center; Robert Carlton, Executive Director, Central Homecare & Hospice, Inc.; Emily Taylor, PhD, Chair, Lawrence Caring Community; Debra Zehr, Vice President of Education and Public Policy, Kansas Assn. of Homes & Services for the Aging; Robert Twillman, PhD, Kansas Pain Initiative, Kansas University Medical Center; Sarah Taylor, MD, Kansas University Medical Center; and Victoria Sherry, Associate Director, Kansas Humanities Council.

·    The Pain Hotline is now available to physicians inquiring about advancements in pain medications at (913) 588-3692.  Many thanks to Bob Twillman and the staff at the Kansas Pain Initiative for their efforts in this area.

·    The Kansas State University Agricultural Experiment and Cooperative Extension Service provided training to all Kansas county extension agents on their “End of Life:  Kansans Deserve Excellent Care” program in August and September.  Kathy Bosch encouraged extension agents to use current resources at their disposal, such as videotapes of the Moyers program and information from the LIFE Project and Caring Communities, to further spread the word about end-of-life care.  A separate training session was also conducted by Kathy for the leaders of the Kansas Association of Family and Community Educators.  The K-State training will also be taught at sites throughout the state beginning in January 2001.

·    The LIFE Project, in conjunction with Central Kansas Medical Center (CKMC), based in Great Bend, continues to implement its pilot project to produce system-wide change in pain management and advance care planning.  LIFE Project representatives Sarah Forbes, Ph.D., and Bob Twillman, Ph.D., met with the CKMC Pilot Project coordinators and Continuous Quality Improvement (CQI) team on Friday, October 27.  To date, the following activities have taken place:

 

On three occasions, Drs. Forbes and Twillman have traveled to Great Bend, Larned, and Ellinwood to survey all current patients within the CKMC inpatient units, as well as to conduct telephone surveys with home health and hospice patients.  These surveys focused on patients’ current levels of pain, their satisfaction with how their pain has been treated, and on their use of advance care planning.  These patients’ charts also were abstracted, to determine the level of documentation related to pain assessment, medications that have been used to treat pain, and evidence of any written aspects of advance care planning (e.g., living wills, durable powers of attorney for health care decisions, etc.).  The results of these surveys are currently being analyzed, with some preliminary results already reported back to the CKMC CQI team.

Staff working within the CKMC system had the opportunity to participate in a series of focus groups, with an emphasis on obtaining their views of the status of pain management and advance care planning within the CKMC system.  Data collected in these focus groups also are being analyzed.

All licensed nurses and physicians with in the CKMC system were presented with a brief knowledge and attitudes survey focusing on pain management and advance care planning.  The results of these surveys have been presented to the CQI team, and will aid them in planning future educational programs to address the knowledge deficits that are exhibited in the surveys.

Essentially, the activities that have taken place to date constitute the development of a baseline data set.  With an established baseline, the CQI team can more readily focus its efforts on addressing the evident problems, and design interventions that may improve care in those areas that appear to be sub-optimal.  The CQI team is planning to meet on a regular basis over the next several months to begin this process, with periodic support from Drs. Forbes and Twillman.  

·    The LIFE Project welcomes Shawnee Mission Medical Center as the latest project partner!

·    The LIFE Project Advance Directives Sub Group hosted a working lunch for attorneys and other interested members on October 2 at Pierpont’s Restaurant at Union Station in Kansas City, MO.  The work group discussed the use of non-statutory language in advance directives in Kansas and made recommendations on critical elements to be included in future documents.  The Public Policy Task Group will summarize the issues and will ask for your support in a letter to go out early next year.

·    The physicians’ palliative care seminar held October 1-6 at the Westin Crown Center in Kansas City, Missouri, was a complete success, according to Donna Bales.   Dr. Robert Twycross, the global leader in the field of palliative care, headed an international team of professionals during the conference.  Thirty-three doctors from the United States and Canada attended, with many of the Caring Communities being represented.  Over 100 nurses and pharmacists attended a special one-day session on October 7.   Funding for this medical education conference was provided by United Methodist Health Ministry Fund, Hutchinson, KS, and the following corporate sponsors:  Roxane Laboratories, Inc.,/Boehringer-Ingelheim, Purdue Pharma, Merck and Co., Inc., Glaxo Wellcome, and Via Christi Regional Medical Center.

·    The LIFE Project has just received the wall charts entitled “End of Life – Kansans Deserve Excellent Care.”  These can be distributed to physicians’ exam rooms, pharmacies, bookstores, libraries, etc.  We would like to thank Mercedes Bern-Klug and her team for their efforts, as well as the financial underwriters:  Center on Aging at Kansas University Medical Center, Kansas Department on Aging, Association of Kansas Hospices, and the LIFE Project.  If you would like to have wall charts and/or bookmarks sent to you, please call Jan Brandom at (316) 263-6380.

·    The Bi-state Telehospice program continues.  Several Kansas and Michigan hospices are involved and have met with the Kansas University Medical Center staff to discuss plans for upcoming EPEC teleconferences at sites across the state.  The teleconferences will run for 8 to 10 weeks with each segment scheduled to be 2 – 2.5 hours in length.   Contact Anita Macan at Kansas University Med. Center at (913) 588-3849 if you would like more information.

·    Plans are in the works for another 2-day intensive EPEC training in the spring of 2001.  LIFE scholarships will be available for nurse/doctor teams to attend.  Call the LIFE Project for more information.

UPCOMING EVENTS  *

·    Association of Kansas Hospices ANNUAL MEETING, Nov. 15-16, Capitol Plaza Hotel, Topeka, Kansas.  The annual meeting will be held in conjunction with the KHA convention, and the keynote speaker will be Jane Morrissey.

·    The Pain Management Task Group will meet on Friday, January 26, 2001, at the Health Alliance Video Conferencing Center in Topeka.

·    The LIFE Project public awareness campaign will begin in January.  Look for public service announcements airing on local television and radio stations and in print in newspapers statewide.  Thanks to the Kansas Association of Broadcasters and the Kansas Press Association for their continued support of the LIFE Project.

·    AARP of Kansas will host a conference on grief and loss in late March or early April.  More details to follow.

·    “Wit,” the Pulitzer Prize-winning  comedy about a woman dying of ovarian cancer, is coming to Kansas.  Sponsored in part by Kansas Health Ethics, the play will tentatively be in Wichita April 26 – May 5 at the Wichita Center for the Arts.  To read recent reviews, please visit their website at www.witworldwide.com.

·    The Governor’s Conference on Aging Services will be held May 3-4, 2001, at the Capitol Plaza Hotel in Topeka.  This year’s theme is “Caring for the Whole Person.”

*  If you have any announcements to add to our calendar, please forward them to Stacie Ogborn at the LIFE Project, 1901 W. University, Wichita, KS  67212, or submit them by email to:  stacie_ogborn@yahoo.com