February 1999

Grant Results

SUMMARY

The Educational Broadcasting Corporation, New York, and Barksdale Ballard & Company, a Vienna, Va., communications firm, produced a television broadcast and a multi-media curriculum to be used by grassroots organizations to promote the exploration of attitudes toward end-of-life issues.

Key Results

  • The project's centerpiece, a one-hour television broadcast, Before I Die, aired on Public Broadcasting Service stations April 22, 1997 and was rebroadcast September 19, 1997. More than 646,000 viewers saw the original broadcast.

    The program featured a panel of experts in medicine, journalism, ethics, and religion who debated three hypothetical scenarios:
    • A young mother dying from advanced breast cancer.
    • A 65-year-old man who, in peak health, signs an advanced directive.
    • A young man with AIDS who seeks control over his death.
  • The project also developed a "Viewer's Guide for Before I Die" and other educational materials for individuals and groups to further explore issues around end-of-life.
  • The project held a pre-broadcast videoconference for 40 local stations or organizations designed to generate interest in organizing discussion groups following the actual broadcast.

Funding
The Robert Wood Johnson Foundation (RWJF) supported the project with two grants totaling $820,705.

 See Grant Detail & Contact Information
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THE PROBLEM

Talking about one's wishes for care when dying is still difficult for many people. Few, if any, roadmaps exist. Commentators on the Foundation-funded SUPPORT study, the largest clinical study ever conducted with seriously ill and dying patients, have observed that the American posture toward death is one of silence, if not outright denial.

The Foundation has funded several projects on end-of-life issues but few have been directed at the consumer. Producers at Seminars Inc., a New York television production firm, proposed to create a broadcast program on end-of-life issues that, along with outreach activities, would seek to generate an open, honest exploration of the topic. The Foundation viewed the format of the proposed program, which follows a Socratic dialogue, as an effective, stimulating means of generating discussion of difficult topics.

The project also was viewed as a natural complement to the Foundation's Last Acts campaign, a national program that seeks to better manage end-of-life care. In addition, national publicity over assisted suicide cases had drawn public attention to end-of-life issues. The timing seemed right to fund national broadcast and outreach activities that could provide the elements and impetus to advance a discussion at the national and grassroots level.

Previously, the Foundation had funded a 1995 broadcast on managed care (ID# 027259) by Seminars Inc. and a four regional seminars (ID# 028213) on managed care. Barksdale Ballard & Co., a Vienna, Va., public relations firm that had handled outreach (ID# 032261) on the Last Acts program, was engaged to supervise much of the outreach on the Before I Die project.

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THE PROJECT

The project encouraged a discussion of end-of-life issues by grassroots organizations through a multi-media curriculum supported by outreach and teaching activities.

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RESULTS

Results of Grant ID# 029469

  • The broadcast. On Wednesday, April 22, 1997, Before I Die: Medical Care & Personal Choices, a one-hour program exploring end-of-life issues, was nationally broadcast by PBS. It was hosted by Tim Russert of NBC's Meet the Press, moderated by Harvard Law Professor Arthur R. Miller, and featured a panel of experts, including doctors, clergy, ethicists, and journalists (see Appendix 1 for details). The program was re-broadcast on September 19, 1997.
  • Broadcast format. Before I Die presented three hypothetical cases designed to:
    • Present basic problems associated with end-of-life care.
    • Deepen the understanding of the difficulty in planning for end of life.
    • Explore the concept of a "good" death and control at the end of life.

    The scenarios feature:
    1. A young mother dying from advanced breast cancer.
    2. A 65-year-old man who, in peak health, signs an advance directive.
    3. A young man with AIDS who seeks control over his death in the final phase of his life.

    Panelists must decide what they would do in complicated situations where the "right" choice is not clear. One viewer wrote, "I enjoyed the program immensely and appreciated the way it thoughtfully tackled numerous situations that we all hope never to face… [It] will provoke discussion and planning of viewers' end-of-life decisions. Thank you for a superior program!"
  • Videoconference. On April 3, 1997, WNET presented a live, interactive program via satellite entitled, Before I Die: A National Conversation, reaching a total of 40 sites, and approximately 2,500 participants across the country. To enable stations and relevant organizations to host the videoconference and conduct follow-up activities, WNET coordinated the allocation of 37 grants averaging $1,000. The videoconference, hosted by PBS stations and other organizations, was designed to help national service organizations and their affiliates establish study or discussion groups for the broadcast of the Before I Die program. (For more detail on outreach activities of PBS stations and other organizations, see Appendix 2.) Five core organizations were convened to help gather audiences and participation in the conference: The Alzheimer's Association; The Hospice Association of America; The American Cancer Society; The American Medical Association; and The American Association of Retired Persons.
  • Segmented videocassettes. To extend the impact of the television program, the original broadcast was re-edited and packaged into five, ten-minute segments that can be used as a teaching tool. The segments focused on these themes:
    • Are You Saying I'm Going to Die? Confronting Our Fears.
    • Your Money or Your Life: The Cost of Dying.
    • The American Way of Death: A Medical Event.
    • I Never Want to Be on Those Machines: Family Matters.
    • The Solution is Not Just Medical: Reclaiming the End of Life.
  • World Wide Web Site. A Web component was designed for the program by the staff of WNET's web site, wNetStation. It provides facts and figures, and includes opinions of experts and the general public on end-of-life issues. A segment entitled Real-Life Stories profiles people who have confronted many of the issues addressed. A bulletin board facilitates the exchange of ideas, opinions, and feedback on the program, as well as opportunities to join on-line support groups. The web component has attracted more than 111,000 visitors as of December 1998. The component received four-star ratings by organizations like the Mental Health Net, and was a "Pick of the Day" by the Web browser service, Yahoo! and was listed as a resource on initiatives like The Project on Death in America.

Results of Grant ID# 029929

  • Outreach. Barksdale Ballard contacted about 400 organizations about attending the taping of the broadcast and invited 297 representatives. The group compiled a database of more than 1,000 national and local organizations for Seminars Inc. outreach and activities. It provided Seminars Inc. with background for about 50 potential panelists, four of whom were chosen in the final panel. Barksdale Ballard also helped recruit 12 of the 40 sites that participated in the pre-broadcast videoconference.
  • Broadcast taping. Sixty-eight organizational representatives attended the December 19, 1996, taping of the program in Washington, D.C. Many of the organizations maintained an involvement in the project through activities such as the videoconference and post-discussion groups. (See Appendix 3 for listing of the attendees).
  • Viewer's guide. The "Viewer's Guide for Before I Die," which was available in both print and electronic form (on WNET's Web site) included five original essays accompanied by discussion questions, sidebars containing pertinent facts, listings of resources and references, and suggestions for use of the guides.
  • Outreach kit. The kit contained sample articles, talking points, a flyer, and background information. This kit was given to the organizations that attended the taping of Before I Die, as well as to invited organizations that could not attend and local organizations requesting information to promote the program and materials in their communities.
  • Resource kit. This kit was a "curriculum" that organizations could order to conduct group programming around Before I Die. The resource kit was a spiral bound notebook that gives tips on how to conduct a meeting about the video. Its sections correspond to the segments in the re-edited video.

The project did not hold a preview screening as planned. Participants felt, with the Foundation's concurrence, that it was unnecessary since audiences had attended the taping and the pre-broadcast videoconference. Forty sites, including health organizations, rather than the planned 50 stations, held a videoconference because of difficulties in securing station interest. Barksdale Ballard picked up some of the outreach activities in organizing the videoconferences after fewer stations expressed interest in the project than expected.

Because several organizations were involved in this project, problems of communication and coordination occurred at times. The RWJF program officer hired a manager to oversee the project but eventually took over coordination of the project himself.

Communications

The original Before I Die broadcast was carried by more than 267 PBS stations and seen by more than 646,000 people. More than 30 newspapers and television guides listed it as a recommended program. Reviews of Before I Die were featured in publications around the country, including The New York Times, and The Washington Post. It was mentioned or discussed on several network television programs including Good Morning America (ABC), Internight (MSNBC), and Fox on Psychology (Fox News Channel).

More than 20,000 viewer's guides have been disseminated to videoconference attendees; to respondents to a toll-free telephone number; to users of PBS Home Video; and to representatives of national organizations. About 3,500 copies of the resource kit and 400 copies of the outreach kit were also distributed. Prior to the Before I Die Web component's launch, Devillier Communications sent an electronic press release promoting the program and the Web site to nearly 1,000 national and international online outlets, reporters, and reviewers. PBS Video has sold nearly 1,000 videocassettes of the program.

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AFTER THE GRANT

The Before I Die videos and educational materials continue to be available through PBS Home Video and are promoted through the WNET Web site. Barksdale Ballard reports that it receives three to four requests a week for the video. Program panelist Karen Stanley, a clinical nurse specialist, is planning a model community-based program focusing on the Before I Die segmented video and outreach programs. In addition, Stanley uses the video at least once a month in making presentations.

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GRANT DETAILS & CONTACT INFORMATION

Project

Multi-Media Curriculum on End-of-Life Issues for Grassroots Organizations

Grantee

Educational Broadcasting Corporation (New York,  NY)

  • Amount: $ 639,705
    Dates: August 1996 to July 1997
    ID#:  029469

Contact

Tamara E. Robinson
(212) 560-2714
robinson@wnet.org

Grantee

Barksdale Ballard & Company (Vienna,  VA)

  • Amount: $ 181,000
    Dates: August 1996 to July 1997
    ID#:  029929

Contact

D. Michael Ballard
(703) 827-8771
mballard@bballard.com

Web Site

http://www.thirteen.org/bid

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APPENDICES


Appendix 1

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Panelists on ''Before I Die: Medical Care & Personal Choices''

Ira R. Byock, M.D.
Director, The Palliative Care Service
President, American Academy of Hospice and Palliative Medicine
Missoula, Mont.

Arthur Caplan, Ph.D.
Director, Center for Bioethics, University of Pennsylvania
Philadelphia, Pa.

Nancy N. Dubler, L.L.B.
Director, Division of Bioethics, Montefiore Medical Center
Professor of Bioethics Albert Einstein College of Medicine
Bronx, N.Y.

Claudia M. Fegan, M.D.
Primary care physician, Hyde Park Associates
Chicago, Ill.

Willard Gaylin, M.D.
Clinical Professor of Psychiatry, Columbia College of Physicians and Surgeons
Hastings-on-Hudson, N.Y.

Constance Holden, R.N., M.S.N.
Executive Director, Hospice of Boulder County
Boulder, Colo.

Rabbi Maurice Lamm
Chair, Professional Rabbinics, Yeshiva University
Author of The Jewish Way in Death and Mourning
Englewood, N.J.

Joanne Lynn, M.D., M.A., M.S.
Director, Center to Improve Care of the Dying, The George Washington University Medical Center
Washington, D.C.

Arthur Miller, Moderator
Professor of Law, Harvard University Law School
Cambridge, Mass.

Sherwin B. Nuland, M.D.
Clinical Professor of Surgery, Yale University, Author of How We Die
Hamden, Conn.

Richard Payne, M.D.
Professor of Medicine (Neurology) and Chief, Section of Pain and Symptom Management,
Department of Neuro-Oncology, University of Texas/MD Anderson Cancer Center
Houston, Texas

Anna Quindlen
Novelist and former New York Times columnist
New York, N.Y.

Jesus Rodriguez
Director of Educational Programs
AIDS Pastoral Care Network
Cook County Hospital
Chicago, Ill.

Katherine E. Slaughter, R.N., M.S.N., C.C.R.N.
Advanced Clinical Nurse, University Hospitals of Cleveland
Cleveland, Ohio

Karen Stanley, R.N., M.S.N., A.O.C.N.
Clinician Nurse Specialist, Pain and Symptom Management, Kaiser Permanente
Fontana, Calif.


Appendix 2

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Outreach Activity Associated with ''Before I Die: Medical Care & Personal Choices''

More than PBS 40 stations and organizations reported conducting some form of outreach.

Arlington, The National Hospice Organization
1901 N. Moore St., Suite 901
Arlington, VA 22209
Jennifer Morales, Coordinator
(703) 294-4411
and
Center to Improve Care of the Dying and the National Hospice Association at the Press Club,
George Washington University
1001 22nd Street, NW #820
Washington, DC 20037
Joanne Lynn, M.D., Coordinator
$2,000
The Center to Improve the Care of the Dying partnered with the National Hospice Organization to host the videoconference and follow-up session. Nearly 50 health care professionals, social workers, hospice workers, physicians, nurses, and teachers attended the videoconference. The Business and Professional Women Foundation, the National Health Policy Forum, the local Veterans Health Administration Medical Center, and the National Association of People with AIDS were active participants. Joanne Lynn, M.D., moderated the discussion and then had discussions in groups following the videoconference. The responses were very enthusiastic. The entire group participated in the follow-up discussion. Many of the attendees commented that more programs like this are needed in order to better inform the public.

Birmingham, Baptist Health System
800 Montclair Road
Birmingham, AL 35243
Frances J. Glenn, Coordinator
(205) 592-5670
$1,000
Baptist Health System hosted the videoconference at Baptist Medical Center. Thirty-five participants joined in a moderator-led discussion following the videoconference. The moderator made suggestions and initiated discussion about how to implement the program in their local communities. One participant commented that, " I am a hospice nurse and it will help me every day in helping take care of my patients and in my own life." Another wrote that, "We need more discussions of this type for public education and physician education."

Boston, WGBH
125 Western Avenue
Boston, MA 02134
(617) 876-3734
$500
WGBH produced a special newsletter and flyer that was sent to 2,500 organizations and individuals.

Boston, American Society for Law, Medicine, and Ethics
765 Commonwealth Avenue
Boston, MA 02215
Ben Moulton, Coordinator
(617) 262-4990
$1,000
The American Society for Law, Medicine, and Ethics hosted the videoconference at their facility. The participants included ASLME members, healthcare professionals, and hospice workers. A discussion followed the videoconference, focusing on spiritual and ethical issues.

Carbondale, WSIU/WUSI
1048 Communications Bldg.
SUIC Mail Code 6602
Carbondale, IL 62901-6602
Beverly Love-Wallace, Coordinator
(618) 453-7128
$1,000
WUSI partnered with TIP Hospice of Southern Illinois to host a screening and discussion of Before I Die at Memorial Hospital of Carbondale, Ill. A representative of TIP moderated the event, and a panel of medical professionals answered questions and prompted the discussion, which followed the viewing. Nineteen people participated in the event, from organizations such as the Southern Illinois Health Care, Southern Illinois TIP Home Health Care, TIP Referral Bureau, and Hospice of Southern Illinois. One participant felt that, "I wish everyone could hear the program to see the many facets involved in these issues." The host and several participants expressed the possibility of planning another session to include more resident doctors and other professionals in the medical community. The event was featured on the front page of the Region section of The Southern Illinoisan.

Chapel Hill, UNC School of Nursing
CB#7460 Carrington Hall
Chapel Hill, NC 27599-7460
(919) 966-5681
$1,000
Twenty-five individuals, primarily from UNC, attended the videoconference. Afterwards, the attendees discussed how the issues pertain to their situations and how they can form a network. The site coordinator wrote that "the downlink provided an excellent opportunity to have an interdisciplinary dialogue about how we might approach dying in our medical center. New contacts were made and new perspectives were heard. I appreciate the opportunity to continue to keep this important aspect of health care 'up front' in the minds of our providers."

Chicago, The Park Ridge Center
211 East Ontario, Suite 800
Chicago, IL 60611-3215
Larry O'Connell, Coordinator
(312) 266-2222
$1,000
The Park Ridge Center sponsored and hosted the videoconference at their facility. Their event attracted mostly clergy members as well as a representative from the American Medical Association and some hospice staff members — a total of 35 participants. The follow-up discussion focused on issues relating to how to incorporate spirituality in end-of-life care. Most of the attendees said that the program was a "good start" and look forward to further discussion. One participant wrote that the event motivated him to plan a retreat for ministers to investigate these issues.

Cleveland, Benjamin Rose Institute
850 Euclid Ave.
Suite 1100
Cleveland, OH 44114
Farida Ejaz, Ph.D., Coordinator
(216) 621-7201
$1,000
The Benjamin Rose Institute sponsored the event at their facility. The 23 participants included members of the Benjamin Rose Institute, the Center for Biomedical Ethics at the Case Western Reserve University, the departments of Bioethics and Anthropology at Case Western University, the School of Nursing at Case Western, the department of Geriatrics at Case Western Reserve University, the Greater Cleveland Nurses Association, Jennings Hall, MetroHealth, University Hospitals of Cleveland, and the School of Nursing at Ursuline College. Future plans include a session hosted by The InterDivisional Ethics Task Force of the Benjamin Rose Institute, and discussion groups.

Columbia, SC-ETV
1101 George Rogers Boulevard
PO Box 11000
Columbia, SC 29211
Patricia Dressler, Coordinator
(803) 737-3437
$1,000
SC-ETV viewed the videoconference and held a local panel discussion led by Dr. Donald Saunders; Rev. Mark Bredholt; Tamara West, President, S.C. Hospice Directors Assn. & director, United Hospice, and Steve Williams, attorney, SC Medical Association. Said Pat Dressler, "Thanks for the opportunity to do something meaningful to a different target audience for us." Her participants thanked her for providing them with the opportunity to gather for discussion, and many stayed after the videoconference to network.

Cookeville, WCTE-TV
PO Box 2040
Cookeville, Tennessee 38502-2040
Becky Magura, Director of Educational Services
(615) 528-2222
$1,000
WCTE-TV hosted the videoconference and linked three rural regions with their main site at TTU Henderson Hall using a fiber optic network. A discussion followed with the panelists located at a main site, with the other sites (York Institute, Livingston Academy, and Celina High School) participating through interactive two-way audio and video. The discussion was moderated by the general manager of WCTE and drew on the expertise of an internist, a nurse, a minister, and the director of a hospice house. Fifty people participated in the videoconference, drawn from the health care profession, community civic groups, religious leaders, government and business leaders, and other interested citizens. WCTE also hosted an additional local follow-up live call-in broadcast a week following the videoconference. Becky Magura notes that many of the rural participants appreciated the opportunity to network with other medical communities. "Without a doubt this outreach project was one of the most positive, successful events conducted at our station. It gave us an opportunity to partner with several communities on a subject of great importance to the general public. It was well received and we will look forward to future projects where we can do the same type of outreach!"

Dallas, Vistas Healthcare at KERA
5001 LBJ Freeway Suite 1050
Dallas, TX 75244
Kathleen Connelly, Coordinator
1-800-664-2004
$1,000
Physicians, social workers, hospice workers, nursing home staff, ethics committee members, and chaplains responded very positively to the videoconference and joined in a lively discussion during the follow-up event. Future outreach plans include distributing the videoconference and outreach materials to church groups, volunteer agencies, and healthcare professionals. According to Kathleen Connelly, "I think the program was excellent and can have a very positive effect on these issues."

Detroit, WTVS
7441 Second Boulevard
Detroit, MI 48202
Laura Stern, Coordinator
(313) 876-8118
$1,000
Forty-five participants consisting of health care workers, hospice directors, religious leaders, and nurses convened at WTVS to watch the videoconference. WTVS outreach director, Laura Stern wrote that the participants "loved it and appreciated public television's involvement." One participant, a clinical nurse specialist, commented that, "It made me feel hopeful that a forum of this nature will help all of us to confront these issues directly and sensitively." Outreach plans include working with the Greater Detroit Area Health Council on the issues concerning care of the dying.

Denver, Colorado Collaboration on End-of-Life Care
250 South Clermont
Denver, CO 80222
Judy Hutchison, Coordinator
(303) 820-5635
$1,000
Organizations, research centers, hospitals, chaplains, and professors were invited by the Colorado Collaboration on End-of-Life Care to meet at DRMA Channel 6 in Denver to view the videoconference. A discussion followed where issues such as patient/family communication, advanced directives, and pain control were discussed. Many felt the information could be useful and used in many ways. The participants found the hospice piece to be particularly moving, and had an interest in doing something like this again.

Erie, WQLN
8425 Peach St.
Erie, PA 16509-4788
Rebecca Pruveadenti, Coordinator
(814) 864-3001
$1,000
The event that followed the videoconference consisted of a local panel of experts who discussed topics and answered the participants' questions. The panel consisted of two doctors, a nurse, a minister, and a lawyer. Participants praised WQLN and PBS, and thought the discussion was very enlightening. An article appeared in the Erie Daily Times about the event. Rebecca Pruveadenti says, "The videoconference was so well received that keeping in touch with represented organizations and providing dubs for all who ask will keep me busy for a while!"

Eureka, KEET
PO Box 13
Eureka, CA 95502-0013
Susan Seaman, Public Information Director
(707) 445-0813
$1,000
KEET sponsored and hosted the videoconference with the help of their local hospice. Twenty members of the community participated in the videoconference, including hospice workers, senior center representatives, home health nurses, clergy, funeral home and health department representatives, and members of the American Cancer Society. The event consisted of a roundtable discussion that analyzed a number of topics. The participants were very happy to have the forum to discuss issues of death and dying. "The diversity of people who attended made a terrific networking opportunity for everybody who participated. The great networking came between the funeral home representatives and others. It seemed that the senior center knew what the health department was doing, but nobody knew about the bereavement groups or single person support groups that the funeral homes offered." One participant commented, "Excellent presentation. It held the interest of the group and led into a good discussion."

Fayetteville, University of Arkansas — School of Nursing
217 Ozark Hall
Fayetteville, AR 72701
Kathleen Barta, Coordinator
(501) 575-5871
University of Arkansas took downlink and hosted event. Did not request grant money and did not report.

Fort Wayne, WFWA
PO Box 39
Fort Wayne, IN 46801
Kristen Rajchel, Coordinator
(219) 484-5663
$1,000
WFWA partnered with the Visiting Nurse Service and Hospice to host a community event in the WFWA studio for the screening of the videoconference. Fifty-three members of the community participated in the event. Phyllis Hermann, RN, from the Visiting Nurse Service and Hospice led the panel discussion. WFWA ran a toll-free number during the broadcast, which connected callers to professionals from the Visiting Nurse Service and Hospice. Kristen Rajchel reports that, "It was great that we were doing this. We all (conference participants) need to work together to educate the public. Very well done; great materials."

Harrington, KMBH
1701 Tennessee Avenue
Harlingen, TX 78551
Thelma Camacho, Development Director
(210) 421-4111
$2,000
Held at KMBH, staff members and volunteers from area hospices (approximately 20) attended the videoconference and the follow-up local discussion. The discussion was informal and moderated by the Sr. Mariam Strohmeryer, the director and administrator of the Comfort House Services Inc. Overall, the attendees found the program to be "very applicable" to their needs by bringing to the forefront those issues and problems that they face every day. One professional commented that "we cannot do enough of these programs." The event was used by the organization to network and organize.

Honolulu, Hospice Hawaii
860 Iwilei Road
Honolulu, HI 96817
Ellen Kumata,
Marketing Coordinator
(808) 924-9255
$1,000
The Center on Aging and Hospice Hawaii collaborated with KHET in this event. The program attracted almost 30 professionals, including hospice volunteers, community organizations, and government and public health agencies. The viewer's guide was helpful because it helped the attendees know what to expect. A local discussion with the director of clinical operations as the facilitator followed the videoconference. One of the attendees noted that "it was touching to hear so many people who work with the dying nationwide." Another wrote that the program "affirmed what our purpose is." KHET made copies of the conference and informed the media that the tape and other materials were available by request.

Illinois, WUSI-TV
PO Box 430
Olney, IL 62450
Helen J. Donsbach,
Outreach Coordinator
(618) 754-3335
$1,000
WUSI partnered with Richland Memorial Hospital of Olney, Hospice of Southern Illinois, Southern Illinois Ministerial Association, Embarras River Basin Agency-Senior Citizens Center, Southern Illinois area health departments and nursing homes, and the Continuing Education Division of Southern Illinois University at Carbondale to present the videoconference at the Richland Memorial Hospital Conference Room. Twenty-three members of the community, including nurses, religious leaders, hospice workers, social workers, physicians, and members of the senior citizens center joined in the videoconference. The event consisted of a moderator-led panel discussion and question and answer session. The conversation afterward was educational, inspirational, and informative. According to Helen Donsbach, "This station was proud to present this excellent information to our community. In fact, just this morning, I received a telephone call from one of the attendees from a local nursing home about hosting their own videoconference. Another attendee said he was planning to have all 128 employees in his organization view the videoconference and broadcast."

Iowa, Iowa Public Television
6450 Corporate Drive
Johnston, IA 50131
Mary Bracken, Programming, Special Projects, Outreach & Utilization
(515) 242-3124
$2,000
More than 50 health care professionals and clergy participated in the videoconference and follow-up session. The follow-up session involved an hour-long statewide conference via a fiber optic network. Reaction to the program was very positive. Attendees noted how the videoconference dealt with difficult issues with honesty and clarity. One participant wrote, "I'm delighted to see the topic is being so well-addressed and I'm excited about being involved as the discussion continues." A special 800 number was activated for viewers to call a panel of experts during the April 22 broadcast.

Los Angeles, KCET
4401 Sunset Boulevard
Los Angeles, CA 90024
Karen Stanley, Coordinator
Betty Farrel, Coordinator
(213) 666-6500
$1,000
Nearly 40 health care professionals, consumer group members, representatives from hospice organizations, oncology nursing personnel, and senior citizen group members attended the videoconference at KCET, which was organized by the Oncology Nursing Society. The event consisted of a moderator-led discussion that discussed legislative issues, how to implement discussion in the community; how to promote improved MD/RN training and education in end-of-life care. "PBS show was an excellent way to focus a much-needed hospice services model for local discussion groups." Participants were enthusiastic about learning how to expand the program into the general community. Responses from videoconference participants include, "good beginning for a much-needed effort" and a "viewer's guide for upcoming show — GREAT!"

Medford, KSYS/KFTS
Southern Oregon Public Television
34 S. Fir St.
Medford, OR 97501
Joy Olson, Coordinator
(541) 779-0808
$1,000
Final Report has not been received.

Mount Holly, Memorial Hospital
175 Madison Ave.
Mt. Holly, NJ 08060
Fran Augustarola, Coordinator
(609) 267-0700
Took down link and hosted a follow-up event. Did not request grant.

Nebraska
$1,000
Nebraska ETV included Before I Die as part of an outreach theme night on end-of-life issues. The theme night, which took place on June 25, was featured in nine daily newspapers, detailed in a press release to area newspapers, and advertised through a flyer developed to promote five programs. The flyer was sent to religious press, Nebraska churches, senior citizen centers, senior newsletters and RSVP centers, state and local health department offices, doctors' offices, medical centers, clinics, Nebraska public libraries, Cooperative Extension offices, hospitals, large Omaha business newsletters, and large Nebraska business newsletters. One hundred and seventy people were sent a packet of materials containing flyers for the programs, viewer's guides, a copy of the videoconference and the folder of materials that accompanied the videoconference. On theme night, volunteers from hospice care organizations answered calls in response to the programs, a live call-in and discussion, at the Nebraska ETV studios. Nineteen calls were received in reference to Before I Die.

New York, WNET
356 West 58th Street
New York, NY 10019
Lennie Duensing, Associate Director of Outreach
(212) 560-3048
More than 100 health professionals attended the live videoconference and participated in a facilitator-lead follow-up discussion.

Philadelphia, WHYY
150 North 6th Street
Philadelphia, PA 19106
Arthur Ellis, Promotion Director
(215) 351-1200
$1,000
WHYY hosted the videoconference. Sixty-five professionals, including staff members from the University of Pennsylvania, the Philadelphia County Medical Society, and the Cancer Information Service, participated. They found the program to be "informative, interesting, touching, excellent, a balanced presentation of issues, a much needed message, and a welcome program to get out the word about hospice care." The follow-up discussion was led by a panel comprised of an associate professor of medicine, an executive director of a hospice, and a director of pain management, and explored how the end-of-life issues relate to organizations in the Delaware Valley.

Phoenix, Hospice of the Valley
1510 East Flower Street
Phoenix, AZ 85014
Christine Tobin, Director of Public Relations
(602) 530-6900
$1,000
Hospice of the Valley teamed with KAET for this project. The attendees were primarily composed of their staff members, a total of 15. Overall, they felt that the discussion reinforced their resolve to educate and assist those who are suffering as they die, and they need more programs like this. The accounts from actual families were the most moving sections of the conference. The site coordinator wrote that the audience seemed grateful for having been invited. An informal panel discussion lead by a social worker and a pastoral counselor followed the videoconference.

Pittsburgh, WQED
4802 Fifth Avenue
Pittsburgh, PA 15213
Kweilin Nassar, Coordinator
(412) 622-1335
$1,000
WQED hosted the videoconference at their station, where 57 participants attended. Kweilin Nassar states that videoconference participants were "mesmerized and the MOST attentive audience we've had." Following the videoconference, she moderated a panel that took questions from the audience. A representative from a hospice, a physician, a gerontologist, the director of Social Awareness at the Catholic Diocese of Pittsburgh, and a member of the Arch Angel Center comprised the panel. Baylee Gordon, Executive Director of Family Hospice wrote, "It is encouraging to know that the need for greater awareness about death and dying is recognized by WQED, which has done so much to inform viewers regarding quality of life issues." Future outreach plans may include a conference around "edge" of life issues — issues dealing with pre-birth and end-of-life.

Plattsburgh, Mountain Lake WCFE
One Sesame Street
Plattsburgh, NY 12901
Marie Anne Ward, Coordinator
(518) 563-9770
$1,000
Five hundred hospice volunteers, clergy, caregivers, and medical personnel attended the videoconference, which was followed by a discussion facilitated by a doctor, the director of a hospice, a nurse, a minister, and a psychiatrist. The participants responded very positively to the program, thought it was accurate and thought-provoking; the Paul Vargas segment raised much discussion; everyone asked for extra materials to share with colleagues.

Pullman, KWSU-TV; KTNW
Murrow 361
Pullman, WA 99164-2530
David Cillay, Coordinator
(509) 335-6524
$1,000
Held at KWSU-TV; KTNW, the station hosted the videoconference and David Cillay moderated a panel discussion afterwards. Eighteen participants responded positively to the videoconference, and were delighted that a dialogue may begin that will shed light on end-of-life issues. The panel took questions from the participants and answered them. The participants "liked the format, style, and professionalism of the panel discussion. The issues were timely. The methods used were moving." One participant writes that the videoconference, "has inspired me to seek more knowledge. I found some terms useful in talking to patients and families. "

Redding, KIXE
603 North Market Street
Redding, CA 96099
Kathy Coulter, Public Information Director
(916) 243-5493
$1,000
This station serves 10 rural counties in Northern California. Eight key individuals from health care agencies and the American Cancer Society attended the videoconference and participated in a follow-up roundtable discussion. The viewer's guide was well received, and three people requested copies. Attendees also complimented the "good mix of formats" and the spiritual focus. All of the attendees wanted a copy of the tape to share with their colleagues. Future plans involve developing a speaker's bureau to approach community organizations, schools, and interested businesses. They are also investigating a plan to produce a live panel discussion regarding end-of-life issues.

Richmond, WCVE-TV
23 Sesame Street
Richmond, VA 23235-3713
Bob Jones, Community Outreach Manager
(804) 560-8144
$1,000
Bob Jones hosted the videoconference at WCVE-TV. Twenty-five professionals who mostly deal with the aging attended. Some comments called the program "illuminating" and it inspired and motivated them to share information and resources. One participant wrote, "I see the mistakes every day and want very much to improve the way we die." Another added that "I wish we could blanket the airwaves with such discussion." A five-member panel directed the follow-up discussion. This panel was composed of a lawyer, bioethics expert, the head of a pain institute, a chaplain, and an aging consultant. According to Bob Jones, "The Before I Die teleconference created a meaningful outreach to our community. We're still hearing from the participants about the excellence of the content and presentation. This is the best example of what only public TV can bring to the community. We greatly look forward to working with WNET's Outreach Department on possible future projects. Their support and the materials provided to us were most helpful."

San Francisco, San Francisco State and Hospice by the Bay
1540 Market Street
Suite 340
San Francisco, CA 94102
Constance Borden, Executive Director
(415) 626-5900
$1,000
The videoconference, which was held at San Francisco State University, was presented to an audience of nurses, social workers, physicians, educators, consumers, and representatives from local foundations. The response from the videoconference was very positive, and many of the invitees used the opportunity to network with each other. The participants valued the videoconference's realism and the expertise of the panelists. The viewers' guide was indispensable. The participants wanted to see more people become involved in the dialogue. Further outreach included distributing the viewers' guide to a network of Northern Californian bereavement coordinators, physician offices, discharge planners, and to all of the site's volunteers.

School of Medicine
University of Washington Medical Department
551 Health Sciences Center
Box 357430
Seattle, WA 98195
Thomas McCormick, Coordinator
(206) 616-1820
$1,000
A total of 60 community members participated in the Before I Die event. Lawyers, healthcare professionals, and members of hospice gathered at KCTS for the videoconference. Many found the hospice information to be the most compelling. There was much expressed interest in sharing the information with organizations, churches, and synagogues. One viewer felt the program would stimulate discussion among her hospice staff.

Silvis, Illini Hospital
Silvis, IL
Taped videoconference held for more than 40 people. Did not request grant.

Spartanburg, WRET-TV
PO Box 4069
Spartanburg, SC 29305
John Edwards, Station Manager
$1,000
WRET-TV hosted the videoconference at the station. Three people attended representing the Valley Falls Terrace Nursing Home and the Spartanburg (S.C.) Regional Hospital System hospice. An informal discussion following the videoconference was held, addressing issues such as physician's philosophy and approach to the terminal patient. John Edwards stated that, "I feel that the videoconference and broadcast program are quite valuable and relevant to a critical societal issue." One participant wrote, "It was very informative and helpful as I minister to resident family members."

Spokane, Department of Educational Services
Sacred Heart Medical Center
PO Box 2555
Spokane, WA 99220
Patty Patton, Coordinator
(509) 458-5236
Took downlink. Staff/bioethics department and community members invited. Did not request grant.

Syracuse, WCNY-TV
506 Liverpool Road
Syracuse, NY 13220
Meghan Young, Coordinator
(315) 453-2424
$1,000
WCNY-TV partnered with Hospice of Central New York and the local chapter of the Oncology Nursing Association to host the videoconference at WCNY. There was an overwhelmingly positive response from the 23 participants, who referred to the videoconference as much needed and overdue, excellent, thought provoking, and thought the "panelists represented a true cross-section of practitioners in this sphere of health care." The discussion following the videoconference was led by Sue Stewart, Director Patient Care at Hospice of Central New York, and Dave Pasinski, Spiritual Care Specialist. The hosts provided a forum for the participants to share resources, and many made an effort to network. Megan Young said, "Excellent. Keep more like this coming! It is a real need in our community. Many people commented that they wish there were more videoconferences like this."

Tampa, WEDU
1300 North Boulevard
PO Box 4033
Tampa, FL 33677-4033
Patricia Suarez, Coordinator
(813) 253-0826
$1,000
WEDU hosted a pre-videoconference discussion, moderated by a physician, where their 31 guests discussed possible questions for the panelists. Patricia Suarez wrote that participants "thoroughly enjoyed it, clapping at times and often nodding in agreement." After, the group met at the Tampa General Hospital to watch the broadcast, and to organize an additional planning meeting. This group is considering offering "death and dying" training for physicians, "How to talk about your final wishes with your family and physician" training for the general public, and dovetailing with the upcoming Hospice-sponsored conferences to present a workshop. The group decided to develop a Living Directory of End of Life Care that informs health care professionals and the general public of the programs and services Tampa offers, and publish it through a resource referral network that is already in existence and widely used. "Perhaps [the directory's] greatest value would be in providing a model for other communities throughout America who will soon be facing the same situations and looking for solutions to the problems that face a community with a rapidly growing elderly and terminally ill population, as we are facing today."

Vermillion, KBHE
Dakota and Cherry Street
PO Box 5000
Vermillion, SD 57069
Elaine George, Coordinator
(605) 677-6454
$1,000
KBHE hosted the videoconference and a group discussion that followed afterwards at the station. The 12 attendees of the videoconference included healthcare professionals, attorneys, and educators. Many at first thought that a panel discussion would not be the most effective way to televise theses issues, but once the videoconference began, they found the program to be fascinating and felt that the role-playing scenarios were helpful. One participant wrote that the program "confirms [her] belief that education about death and dying is needed for everyone." The event encouraged the attendees to network, and the station has been distributing videotapes to interested parties.

Waco, KCTF
PO Box 304
Waco, TX 76703
Nan Holmes,
Special Projects Manager
(817) 755-3472
$1,000
KCTF partnered with Hillcrest Community Hospice and AARP to host the videoconference held at Hillcrest Baptist Memorial Hospital. Forty-nine healthcare workers, hospice members, and representatives from the AARP attended the videoconference and participated in the panel discussion led by moderator Helen Harris, bereavement coordinator, Hillcrest Community Hospice of Waco. Some comments from videoconference attendees were: "extremely high marks for broadcast and teleconference," "as a student chaplain, this video served as a great intro to what I am expecting to encounter," and "thank you for sponsoring this."

Warrensburg, KMOS
Corner of College and Clark
Central Missouri State U.
Warrensburg, MO 64093
Michael O'Keefe, Coordinator
(816) 543-4155
Took downlink. Did not request grant.


Appendix 3

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Attendees of the Taping of ''Before I Die: Medical Care & Personal Choices''

Donna Shalala
Secretary of Health and Human Services
Department of Health and Human Services
Washington, D.C.

Jeanette Takamura
Assistant Secretary for Aging
Department of Health and Human Services
Washington, D.C.

Debbie Zeldon
Alliance for Aging Research
Washington, D.C.

Ed Howard
Executive Vice President
Alliance for Health Reform
Washington, D.C.

Stephen McConnell
Senior Vice President of Public Policy
Alzheimer's Association
Washington, D.C.

Ellen Rathfon
Director of Professional Affairs
American Academy of Physician Assistants
Alexandria, Va.

Scott Parkin
Vice President, Communications
American Association of Homes & Services for the Aging
Washington, D.C.

C. Roy Woodruff, Ph.D.
Executive Director
American Association of Pastoral Counselors
Fairfax, Va.

Betty Davis
Senior Program Specialist
American Association of Retired Persons
Washington, D.C.

Andrew Smith
American Association of Retired Persons
Washington, D.C.

Charles P. Sabatino, J.D.
Assistant Director
ABA Commission on Legal Problems of the Elderly
American Bar Association
Washington, D.C.

Naomi Naierman
President and CEO
American Hospice Federation
Washington, D.C.

Harry Kelly
Assistant Director for Program Development
The American Legion
Washington, D.C.

Jean Foureroy, M.D.
Past President
American Medical Women's Association
Bethesda, Md.

John Blamphin
Director, Division of Public Affairs
American Psychiatric Association
Washington, D.C.

Roy Bulger, M.D.
President
Association of Academic Health Centers
Washington, D.C.

Steve Devlin, Ph.D.
Acting Director
Boettner Center of Financial Gerontology
University of Pennsylvania School of Social Work
Philadelphia, Pa.

George Zitnay, Ph.D.
President and CEO
Brain Injury Association
Washington, D.C.

Andy Burness
President
Burness Communications
Bethesda, Md.

Ed Hatcher
Burness Communications
Bethesda, Md.

Mildred Soloman, Ed.D.
Director
Education Development Center, Inc.
Center for Applied Ethics & Professional Practices
Newton, Mass.

Joanne Lynn, M.D., M.A., M.S.
Director, The George Washington University
Center to Improve Care of the Dying
Washington, D.C.

Ann Armstrong-Dailey
Founding Director
Children's Hospice International
Alexandria, Va.

Karen Kaplan, M.P.H., Sc.D.
Executive Director
Choice in Dying
Washington, D.C.

Liz Hall
Account Supervisor
Devillier Communications
Washington, D.C.

Sally Kranz
Public Relations Director
General Federation of Women's Clubs
Washington, D.C.

Steve Levy, M.D.
Harnot Family Practice Residency
Erie, Pa.

Susan Block
Teaching Program, D.A.C.P.
Harvard Community Health Plan
Boston, Mass.

William Knaus, M.D.
Health Evaluation Sciences
Charlottesville, Va.

Diane Jones
Executive Director
Hospice Association of America
Washington, D.C.

Dennis S. O'Leary, M.D.
President
Joint Commission on Accreditation of Health Care Organizations
Oakbrook Terrace, Ill.

Virgil C. Dechant
Supreme Knight
Knights of Columbus
New Haven, Conn.

David Frankel, M.D.
North American Editor
The Lancet
New York, N.Y.

Donna Moss, M.A., C.S.W.
National Director, Patient Services Programs
Leukemia Society of America
New York, N.Y.

Myra Christopher
Director
Midwest Bioethics Center
Kansas City, Mo.

Gail Hunt
National Alliance for Caregiving
Bethesda, Md.

A. Cornelius Baker
Deputy Executive Director for Programs
National Association of People with AIDS
Washington, D.C.

Harold Price
President
National Association of Retired Federal Employees
Washington, D.C.

Ellen Stovall
Executive Director
National Coalition for Cancer Survivorship
Silver Spring, Md.

Linda Golodner
President
National Consumers League
Washington, D.C.

Steve Protulis
Executive Director
National Council of Senior Citizens
Silver Spring, Md.

Myra Weinberg, C.A.E.
President
National Health Council
Washington, D.C.

Marta Sotomayor, Ph.D.
President
National Hispanic Council on Aging
Washington, D.C.

Chris Cody
Director, Professional Regulatory Affairs
National Hospice Organization
Arlington, Va.

Shirley Lamm
Director for Human Resources
National Institute for Jewish Hospice
Englewood, N.J.

Elaine Baldwin
National Institute of Mental Health
National Institutes of Health
Rockville, Md.

Joseph Fine, M.D.
Associate for Medicine
The New York Hospital
Cornell Medical Center

New York, N.Y.

Kyle Bacon
Project Director for Seniors in Community Service
Northern Virginia Urban League
Alexandria, Va.

Deborah Briceland-Betts
Executive Director
Older Women's League
Washington, D.C.

Sandy Heberer
Director of News and Information
PBS
Alexandria, Va.

Thomas Delbanco, M.D.
The Picker Institute
Boston, MA

Sylvia McSkimming
Executive Director
Supportive Care of the Dying
Providence Medical Center
Portland, Ore.

Marc S. Kaplan
Senior Communications Officer
The Robert Wood Johnson Foundation
Princeton, N.J.

Eleanor Mattison
Communications Assistant
The Robert Wood Johnson Foundation
Princeton, N.J.

Lewis Sandy, M.D.
Executive Vice President
The Robert Wood Johnson Foundation
Princeton, N.J.

Paul Tarini
Communications Officer
The Robert Wood Johnson Foundation
Princeton, N.J.

Victoria Weisfeld
Senior Communications Officer
The Robert Wood Johnson Foundation
Princeton, N.J.

Russel E. Morgan, Jr., Ph.D.
SPRY Foundation
Washington, D.C.

Sandra Beckwith
Stewart Communications
Fairport, N.Y.

Karen Long
Stewart Communications
Chicago, Ill.

Jill Stewart
Stewart Communications
Chicago, Ill.

Michael DeVita, M.D.
Director, Medical Center
University of Pittsburgh
Pittsburgh, Pa.

Carlos Gomez, M.D., Ph.D.
Assistant Professor, School of Medicine
University of Virginia
Charlottesville, Va.

Richard Doerflinger
Editor "Life at Risk"
US Catholic Conference
Washington, D.C.

Maura Kelly
Senior Producer
WNET
New York, N.Y.

Ann Mauze
Director of Outreach
WNET
New York, N.Y.

Fred Noriega
Director, Community and Children's Programming
WNET
New York, N.Y.

Sandra Sheppard
Director
WNET
New York, N.Y.

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Books and Reports

"Viewer's Guide for Before I Die." New York, N.Y.: Seminars, Inc. 1997. 20,000 copies distributed as of September 1, 1997

"Outreach Manual for Before I Die." New York, N.Y.: Educational Broadcasting Corporation. 1997. 400 copies distributed as of September 1, 1997.

"Resource Kit for Before I Die." Vienna, Va.: Barksdale Ballard. 1997. 3,500 copies distributed as of January 1999.

World Wide Web Sites

www.thirteen.org/bid. A companion piece to the broadcast, it contains information about end-of-life issues. New York City, N.Y.: Thirteen/WNET. April 1, 1997; 111,000 visits as of December 1998.

Audio-Visuals and Computer Software

Before I Die: Medical Care and Personal Choices (one hour discussion of end-of-life issues). Washington, D.C.: WNET. Aired on PBS, April 22, 1997.

Segmented version of Before I Die (5 ten-minute segments). New York, N.Y.: Seminars Inc. 1997.

Press Kits and News Releases

A news packet on the broadcast of Before I Die: Medical Care and Personal Choices was mailed by Devillier Communications on February 27, 1995 to nearly 1,000 media outlets.

Print Coverage

"Final Hours Can Lead to Turmoil," The Tampa Tribune, April 8, 1997.

"The Man With a Better Idea," The New York Times, April 20, 1997.

"Frank Talk on Dying: Examining the Choices," The New York Times, April 21, 1997.

"Helping the Public to Better Understand That Dying is a Fact of Life," The Philadelphia Inquirer, April 21, 1997.

"KCTS Offers Superb Mix of Invigorating Subjects," Seattle Times, April 21, 1997.

"TV Review: Before I Die: Medical Care and Personal Choices," National Catholic News Service, April 22, 1997.

"PBS Examines Our Way of Death," The Boston Globe, April 23, 1997.

"Hypothetically Speaking, Life-and-Death Decisions Examined," The Dallas Morning News, April 23, 1997.

"Death on Trial: PBS's `Before I Die,'" Commonwealth, April 25, 1997.

"A Friend of the Constitution," The Washington Post, May 3, 1997. Also ran as "Newsman Brought Constitution Home," The Rocky Mountain News, May 5, 1997.

"Much Can be Offered to the Dying," The Tampa Tribune, July 15, 1997.

Radio Coverage

On April 21 from 9am to 1pm EST, panelist Ira Byock, M.D., and RWJF senior program officer Rosemary Gibson conducted 13 four- to eight-minute interviews with public radio program hosts across the northeast from Philadelphia to Orlando. The following outlets participated: METRO NETWORKS/Chicago; METRO NETWORKS/Baltimore; WNIC-FM/Detroit; WWJ-AM Detroit; WGAR-FM/Cleveland; WWMX-FM/Baltimore; WLTJ-FM/Pittsburgh; WRRK-FM/Pittsburgh; WMUZ-FM/Detroit; WMMB-AM/Orlando; WOBM-FM/New York; WRDR-FM/Philadelphia; WERZ-FM/Boston; WEMP-AM/Milwaukee; WSRI-FM/Boston; WZNN-AM/Boston and WMYF-AM/Boston.

"A Philadelphia Conversation," WHYY 91FM, Philadelphia, Pa., April 2, 1997.

"A Philadelphia Conversation," WHYY 91FM, Philadelphia, Pa., April 22, 1997.

Television Coverage

"Good Morning America," interview about Before I Die, ABC, April 22, 1997.

"Internight," interview with panelists from Before I Die, MSNBC, April 22, 1997.

"Fox on Psychology," interview with panelists from Before I Die, Fox News, April 10, 1997.

"Greater Boston," Before I Die moderator interviewed, WGBH-TV, April 22, 1997.

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Report prepared by: Susan G. Parker
Reviewed by: Richard Camer
Reviewed by: Marian Bass
Program Officer: Marc Kaplan

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