The Kansas LIFE Project Caring Communities

Lawrence Area Coalition to Honor End-of-Life Choices (Lawrence Area CHEC)

Formerly called Lawrence Caring Community Council

Visit us online at www.lawrenceareachec.org

About the Lawrence Caring Community Council

The Lawrence Caring Community Council is among 31 Caring Communities that are working to implement initiatives of the Kansas LIFE Project (Living Initiatives For End-of-Life Care).

• The LIFE Project works to continually improve the environment including public policy, legislation, and regulation of end-of-life care.
• The LIFE Project listens and learns from the citizens of Kansas, provides tools and information to empower them and help them to expect and receive good care at the end of life.
• The LIFE Project works with health care professionals and health care systems of Kansas to improve levels of expertise in end-of-life care.

Their mission is to help all Kansans live with dignity, comfort and peace at the end of life.

The Council has met regularly since February 2000 for education, information-sharing and planning.

Council members attended the "On Our Own Terms: Moyers on Dying" Community Leadership Videoconference at KU on April 18, 2000. Nine Town Hall meetings were conducted throughout Lawrence on Sept. 14, 2000 to encourage discussion and feedback following the airing of the PBS series "On Our Own Terms" Sept. 10-13, 2000.

LIFE Project wall charts and bookmarks have been distributed throughout the community by Council members.

· Community Survey on End of Life Issues

In an effort to better understand the issues that individuals face at the end of life and the kinds of resources that might assist them, a community outreach survey was developed and administered to 228 county residents in August and September of 2000. Of the respondents, 121 had experienced a loss of someone close to them within the last three years, and of those, 46 (20.2% of total sample) had been closely involved with the care of the individual during the last six months of his or her life.

A large majority of respondents reported that they had been given adequate information about most aspects regarding the disease and treatment of their loved one. However, there was significant variation across the different aspects related to the disease and dying, with the adequate information most often being given regarding what was wrong with the individual (79.8% of the time) and least often being provided about hospice options (63.1%) and insurance or reimbursement issues (61.9%). Indeed, one quarter of the respondents reported receiving no information about hospice options and about a fifth (19.6%) of the respondents received no information about insurance or reimbursement.

All respondents were asked about their fear of dying. The mean score of 1.74 (within a 4 point range) with little variation indicates that most respondents report little or no fear or dying. However, most respondents would like to talk with someone if they were dealing with a terminal illness. Respondents reported a desire for discussing death and dying issues with family members most frequently (79%). A preference for discussions with spiritual advisors was expressed by 47.7% of the respondents with 30.7% expressing a desire for discussion with hospice workers. Only 10 of the respondents (4.7%) reported that they did not want to talk to anyone about death and dying issues.

Respondents were asked to identify the level of importance various aspects of end of life issues had for them. All of these items were scored from 1 to 5, with 5 being "very important." Consensus about importance was found on a majority of issues. "Having a person that I trust to make difficult decisions on my behalf" had the highest mean score of 4.76 with little variance. "Having matters settled with your family" (4.60) and "relieving your pain" (4.61 had the next highest means, also with limited variance. Surprisingly, "dying at home" (3.34) had the lowest mean score and the highest level of variation. This reflects the lower importance that many respondents placed on dying at home as compared to other end-of-life issues.

· Membership & Contact Information

Donna Bell, Executive Director, Brandon Woods Retirement Community (785) 838-8000; Dbell@RMCI.com

Bette Booth, Social Marketer (785) 865-4027; betteb@grapevine.net

Caroljean Brune, Assistant to Dean, School of Education, University of Kansas (785) 864-9609; bacjb@ukans.edu

Karen Davis, Community Information Coordinator, Lawrence Public Library (785) 843-3833; kdavis@lawrence.lib.ks.us

Dorothy Devlin, Executive Director, Lawrence Presbyterian Manor (785) 841-4262; ddevlin@pmma.org

Janice Early-Weas, Director, Community Relations, Lawrence Memorial Hospital (785) 840-3132; jaeweas@lmh.org

Ann Gardner, Editorial Page Editor, Lawrence Journal-World (785) 832-7153; agardner@ljworld.com

Rev. John Gingerich, retired (785) 841-2531; joro@sunflower.com

Dr. Phillip A. Godwin, retired (785) 843-9504; philgod@lawrence.ixks.com

Margaret Gordon, Professor Emerita, School of Social Welfare, University of Kansas (785) 842-1848; msgordon@eagle.cc.ukans.edu

Marceil Lauppe, Executive Director, Visiting Nurses of Douglas County (785) 843-3738; marceil@vna.lawrence.ks.us

Suzanne McColl, President, Lawrence Branch AARP (785) 842-0446; themccolls@msn.com

Larry McElwain, Warren-McElwain Mortuary (785) 843-1120; lkmbcpack@aol.com

Sister Irene McGrath, Director, Martha and Mary's Way (785) 832-0983; irene330@juno.com

Gene Meyer, President & Chief Executive Officer, Lawrence Memorial Hospital (785) 749-6130; gemeyer@lmh.org

Nadereh Nassari, Patient Care Coordinator, Hospice Care of Douglas County (785) 843-3738; nadereh.n@vna.lawrence.ks.us

Rev. Judy Long O'Neal, Pastor, Centenary United Methodist Church (785) 843-1756; Jlongoneal@aol.com

Rev. John Polk, Lawrence Memorial Hospital Chaplain (785) 840-3140; jopolk@lmh.org

Janet Riley, Associate Director, Budget Management & Fiscal Services, University of Kansas (785) 864-3134; jriley@ukans.edu

Dr. Richard Schiefelbusch, Distinguished Professor Emeritus, Scheifelbusch Institute of Life Span Studies, University of Kansas (785) 843-5869; rschiefelbusch@ku.edu

Teresa Sikes, Director of Skilled Nursing Facility, Lawrence Memorial Hospital (785) 749-6473; tesikes@lmh.org

Bill Snead, Senior Editor, Lawrence Journal-World (785) 832-7196; bsnead@ljworld.com

Dr. Richard Sosinski, MD (785) 843-5160; Richjhawk@aol.com Jeff Weinberg, Assistant to Chancellor, University of Kansas (785) 864-3131; jweinberg@ukans.edu

Jeff Weinberg, Assistant to the Chancellor, University of Kansas (785) 864-3131; jweinberg@ukans.edu

· Volunteer Opportunities

· Hospice Care in Douglas County (785) 843-3738 Web site: http://www.ci.lawrence.ks.us/hospice/index.html

· Other Community Resources

If your organization would like to be listed as a community resource, please contact Janice Early-Weas at 840-3132 or jaeweas@lmh.org.

· Hospice Care in Douglas County (785) 843-3738 Web site: http://www.ci.lawrence.ks.us/hospice/index.html

· Lawrence Memorial Hospital Social Services Department (785) 749-6149 Web site: www.lmh.org

· Douglas County Senior Services (785) 842-0543 · Douglas County AIDS Project (785) 843-0049 Web site: http://community.lawrence.com/dcap

· Douglas County Visiting Nurses Association (785) 843-3738 Web site: http://www.ci.lawrence.ks.us/vna/vnaindex.html

· Trinity Respite Care (785) 842-3159

· Headquarters Counseling Center (785) 841-2345 Web site: http://hqcc.lawrence.ks.us

· Lawrence Public Library (785) 843-3833 Web site: http://www.lawrence.lib.ks.us

· Kansas Home Care Association (785) 841-8611

· Older Women's League (785) 842-1747

· ICAN - Interfaith Caring Neighbors (785) 749-2005

· Lawrence Meals on Wheels (785) 842-6697

· Support Groups

· Breast Cancer Support Meets at 5:30 p.m. Mondays at Presbyterian Manor, 1429 Kasold Suzie Taylor Meadow, 766-8887

· Cancer Support Group Meets at 7 p.m. the 2nd and 4th Thursdays at LMH, 325 Maine Donna Flory, 864-9854 or 864-4121

· Diabetes Support Group Meets at 7 p.m. the 3rd Thursdays of the month at LMH, 325 Maine Hazel Burgert, 843-1464

· Fibromyalgia Support Group Meets at 7 p.m. the 2nd and 4th Mondays of the month at Neu Physical Therapy Center, 1305 Wakarusa Drive Marian Flynn, 749-2570

· Lawrence/Douglas County Head Injury Support Group Meets at 7 p.m. the 3rd Tuesday of the month at LMH, 325 Maine Jeanne Hetherington, 842-3619,or Mary Kreider, 842-3343

· HIV-Wellness Group Douglas County AIDS Project, Mary Jensen, 843-0040

· Parkinson's Support Group Meets at 2 p.m. the 3rd Tuesday of the month at First Presbyterian Church, 2415 Clinton Parkway Shirley Pozdro, 843-8692

· Peer Support Group (for anyone with any disability) Ranita Wilks or angie Rainking, 841-0333

· Stroke Support Group Meets at 4 p.m. the 3rd Wednesday of the month at LMH, 325 Maine Lynn Murphy, 840-2886

· Caregivers Support Group (for anyone giving care to a person with Alzheimer's diseae, senile dementia or seniors with other impairments) Douglas County Senior Center, 842-0543

· Douglas County AIDS Project Friends & Family Support Group Marilee Janssen, 843-0040

· Beyond Loss Support Workshops Meets periodically at Warren-McElwain Mortuary, 120 W. 13th Phil Friedeman, 843-5339

· Grief Recovery Support Group Meets at 7 p.m. Thursdays at LMH, 325 Maine David Hallenbeck, 843-5111

· Library Resources

The following educational materials are available for check out from the Lawrence Public Library, 707 Vermont. The number in the parentheses is the call number for the item in the collection.

· Art of dying: how to leave this world with dignity and grace, at peace with yourself and your loved ones. Weenolsen, Patricia. (155.937)

· As I journey on: meditations for those facing death. Dardis, Sharon. (155.937)

· Be prepared: the complete financial, legal, and practical guide for living with a life-challenging condition. Landay, David S. (332.024)

· Caregiving: the spiritual journey of love, loss and renewal. McLeod, Beth Witrogen. (362.175)

· Child dies: a portrait of family grief. Arnold, Joan Hagan. (155.937)

· Death and dying: opposing viewpoints. Winters, Paul A. (174.24)

· Dying: a book of comfort. McNees, Pat, ed. (242.4) · Dying time: practical wisdom for the dying and their caregivers. Furman, Joan (362.175)

· Facing death: where culture, religion, and medicine meet. Spiro, Howard M. and Mary G. McCrea, eds. (155.937)

· Facing death and finding hope: a guide to the emotional and spiritual care of the dying. Longaker, Christine. (155.937)

· False hopes: why America's quest for perfect health is a recipe for failure. Callahan, Daniel. (362.1097)

· Final negotiations: a story of love, loss and chronic illness. Ellis, Carolyn. (362.1962)

· Final passage: sharing the journey as this life ends. Whitfield, Barbara Harris. (155.937)

· Finding hope when a child dies: what other cultures can teach us. Miller, Sukie with Doris Ober. (291.23)

· Five stages of the soul: charting the spiritual passages that shape our lives. Moody, Harry and David L. Carroll. (291.44)

· Fragments on the deathwatch. Harmon, Louise. (306.9)

· Good death: challenges, choices, and care options. Meyer, Charles. (362.173)

· Good enough daughter: a memoir. Shulman, Alix Kates. (813.54)

· Grace in dying: how we are transformed spiritually as we die. Singh, Kathleen Dowling. (291.23)

· Graceful exits: how great beings die: death stories of Tibetan, Hindu and Zen masters. Blackman, Sushila. (294.3423)

· Grandma's Scrapbook. Nobisso, Josephine. (j P NOBISSO) · Grandpa Loved. Nobisso, Josephine. (j P NOBISSO)

· Healing children's grief: surviving a parent's death from cancer. Christ, Grace Hyslop. (155.937)

· How we grieve: relearning the world. Attig, Thomas. (155.937)

· I'm with you now: a guide through incurable illness for patients, families, and friends. Ray, M. Catherine. (362.175)

· In memoriam: a practical guide to planning a memorial service. Bennett, Amanda and Terence B. Foley. (393.9)

· In the midst of winter: selections from the literature of mourning. Moffat, Mary Jane, ed. (808.8035)

· Intimate death: how the dying teach us to live. Hennezel, Marie de. (155.937)

· Last passage: recovering a death of our own. Heinz, Donald. (306.9097)

· Last word: the New York Times book of obituaries and farewells: a celebration of unusual lives. Siegel, Marvin, ed. (920.073)

· Lessons from the dying. Smith, Rodney. (291.23) · Light on aging and dying: wise words. Nearing, Helen. (LARGE PRINT 305.26)

· Loss that is forever: the lifelong impact of the early death of a mother or father. Harris, Maxine. (155.937)

· Managing death. Hoefler, James M. (179.7)

· Measure of our days: a spiritual exploration of illness. Groopman, Jerome E. (362.175)

· Medical care of the soul: a practical and healing guide to end-of-life issues for families, patients, and health care providers. Bartlow, Bruce G. (306.9)

· Metaphysics of death. Fischer, John Martin. (128.5) · Midwife through the dying process: stories of healing and hard choices at the end of life. Quill, Timothy E. (179.7)

· Mourning and Mitzvah: a guided journal for walking the mourner's path through grief to healing. Brener, Anne. (296.445)

· Mourning handbook: the most comprehensive resource offering practical and compassionate advice on coping with all aspects of death and dying. Fitzgerald, Helen. (155.937)

· No time to say goodbye: surviving the suicide of a loved one. Fine, Carla. (362.283)

· On our own terms: Moyers on dying (video). (VC 306.9097)

· Only spring: on mourning the death of my son. Livingston, Gordon. (362.1989)

· Parting company: understanding the loss of a loved one: the caregiver's journey. Pearson, Cynthia. (306.9)

· Refuge: an unnatural history of family and place. Williams, Terry Tempest. (362.1969)

· Sacred remains: American attitudes toward death, 1799-1883. Laderman, Gary. (306.9097)

· Saying goodbye with love: a step by step guide through the details of a death. Martin, Sheila. 306.9

· She came to live out loud: an inspiring family journey through illness, loss, and grief. MacPherson, Myra. (155.937)

· Sometimes my heart goes numb: love and caregiving in a time of AIDS. Garfield, Charles A. (362.1969)

· Surviving the fall: the personal journey of an AIDS doctor. Selwyn, Peter A. (616.9792)

· Undertaking: life studies from the dismal trade. Lynch, Thomas. (814.54)

· What the dying teach us: lessons on living. Oliver, Samuel Lee. (259.4175)

· Who dies: an investigation of conscious living and conscious dying. Levine, Stephen. (306.9)

· You are so beautiful without your hair: a daughter's journey with the death of her parents. Piela, Suzane. (155.937)

· Zen of living and dying: a practical and spiritual guide. Kapleau, Philip. (294.3423)

LIFE Project
1901 University - Wichita, Kansas 67213-3325
316.263.6380
316.263.6542 fax
HELPLINE (tollfree) 888-202-5433
888-202-LIFE
contact@lifeproject.org