The Florida Death Cadre

Right-to-die activists went full throttle on state level projects after the 1997 Supreme Court decisions (Vacco v. Quill, and Washington v Glucksberg).

Robert Wood Johnson Foundation's Last Acts (RWJF) and George Soros's Project on Death in America (PDIA) used bioethics networks, hospital ethics committees, hospices, and cancer pain initiative groups at the state level as a ready-made framework for institutional and legislative change, and for public activism.

Florida had an active bioethics network via the universities. In addition, bills ushered through the legislature by Lois Frankel (D-Palm Beach) and Ron Klein (D-Boca Raton) established pain centers and created a state-level end-of-life panel. The panel's purpose was to advance changes to Florida statutes with regard to surrogacy and advance directives, DNR portability, and pain medication use. Florida did not have a state chapter of Health Decisions (the national organization), but Aging With Dignity provided a similar type of community forum for focusing and framing health care issues for the public.

With that framework in place, a number of national end-of-life projects — including RWJF's $11 million Community-State Partnerships (CSP) — were active in changing the laws and norms that regulate Florida end-of-life medicine. Midwest Bioethics surveyed the successes of the end-of-life coalitions in CSP's final newsletter (June, 2003; see Issue 19 in the archives).

The CSP newsletter points to Maine as a good example of how the state coalitions work under Midwest Bioethics' direction. In a section titled "Neutralizing Special Interests...," CSP reported that “coalitions are 'policy entrepreneurs' because they…neutralize special interests and defuse contentious policy issues." In Maine, for example, the state coalition at the Maine Hospice Council "further built consensus by inviting as many groups to the table as possible, including vocal supporters of assisted suicide and right-to-life groups." In other words, the coalitions sought to neutralize right-to-life.

Midwest Bioethics noted that "some of the state coalitions were made up of existing local coalitions, which allowed them to make use of networks and relationships already in place: . . . In Florida, state hospice service areas morphed into local coalitions that carried out much of the work on the CSP agenda."

In November, 1999, CSP awarded $450,000 to Florida Hospices and Palliative Care in Tallahassee. The grant was to fund the state-level coalition, Florida Partnership for End-of-Life Care. Samira Beckwith of HOPE Hospice in Ft. Myers was principal investigator for the Florida Partnership project. (HOPE Hospice had received a small NIH grant in 1997 for internet connection.) Ray Moseley, PhD (Florida Bioethics Network and University of Florida) was co-investigator, and University of Florida received part of the grant money. (Moseley's NIH grant in the early 1990s was to study “the insurance implications of the human genome map.”)

Meanwhile, Hospice of the Florida Suncoast had launched a palliative care training facility in 1994. Kathy Egan, MA, BSN, received an NIH grant to establish the "train-the-trainer" certification program. The training program was conducted by "the Institute" at Hospice of the Florida Suncoast. When Partnership for Caring launched their $12 million training and outreach program (Rallying Points) in 2000, the Institute became a national resource center for training trainers in palliative care.

Also in 2000, in nearby Tampa, Susan McMillan (NIH grant recipient) and colleagues at University of South Florida and Moffit Cancer Center began planning the Center for Hospice, Palliative Care and End-of-Life Studies. The Center would open in 2002, and Hospice of the Florida Suncoast was part of the collaboration.

[more to come]

The Florida Experiment

1990

Florida Bioethics Network is founded by two professors at University of Florida's College of Medicine:

Ray Moseley, Ph.D. - University of Florida, College of Medicine; Director of Medical Ethics, Law and the Humanities; bioethicist from Georgetown Univ. Kennedy Institute of Ethics; NIH grants in early 1990s to study the "Insurance Implications of a Complete Human Genome Map."
James Wagner, Ph.D., M.Div. - co-chair of a hospital ethics committee (Shands)

1994

Hospice Institute of the Florida Suncoast is founded. NIH underwrites the venture with a three-year grant totalling $288,000 to Kathleen Egan for a "Train the Trainer" program in palliative care.

1994

Florida state legislature establishes the Florida State Pain Commission, staffed by Florida's Agency for Health Care Administration (AHCA). The Commission is formed, in part, by members of the American Pain Society and the cancer pain initiatives.

1996

Towey launches Project 2010: Community meetings and discussion about end-of-life issues.

1997

Pain Centers: Florida Pain Management Commission recognizes pain treatment centers. "Florida no longer automatically investigates any physician who is reported for prescribing large quantities of narcotics. The commission is proposing a law that would include recognition of certain types of physicians and centers as pain treatment specialists. Florida also has produced pain guidelines that recognize the need for broad flexibility in prescribing drugs for intractable pain and require physicians to document individual need and failed attempts at alternative treatment."
Ref: Assisted Suicide reference at Willamette University College of Law; Valerie J. Vollmar, 1998

1998

May

Bill (HB 3387) to establish Alzheimer's clinics, also establishes a 22-member Panel for the Study of End-of-Life Care at the Pepper Institute. The bill was introduced in January in the Florida House by representative Lois Frankel (D-Palm Beach), and became law (without the governor's signature) in May, 1998.

The act specified how many members should be on the panel, and which organizations should be represented. The Panel was comprised of:

Two persons representing hospice organizations and one representing consumers, appointed by the Florida Hospice Association
- Hospice:
  - Samira K. Beckwith (FL Hospices and Palliative Care; HOPE Hospice in Ft. Myers; NIH grantee)
  - Mary Labyak (Hospice of the Florida Suncoast in Largo; Partnership for Caring member; hospice was NIH grantee);
- Consumers: Jack Gordon (Hospice Foundation of America; Soros/PDIA grantee), alt. David Abrams;
Three persons representing nursing homes and assisted living facilities:
- Florida Health Care Association (FHCA): LuMarie Polivka-West, and Dr. Howard Tuch, MD;
- Florida Association of Homes for the Aging: Marshall Seiden, alt. Molly McKinstry;
Three persons representing hospitals, appointed by:
- Florida Hospital Association (FHA): Dr. Susan White, alt. Bill Bell;
- Florida League of Health Systems: Belita Moreton;
- Association of Community Hospitals and Health Systems of Florida, Inc: Joan Fulbright;
One person each appointed by the
- Florida Medical Association: Dr. Alvin Smith, MD
- Board of Medicine: Dr. Gary Winchester, MD, alt. Dr. Louis C. Murray, MD
- Board of Osteopathic Medicine: Dr. Robert Panzer, DO, alt. Dr. Archie H. McLean
- The Florida Bar (Kenneth Rubin, alt. Mary Alice Ferrell)
- and the Florida Nurses Association: Cathy Emmett, alt. Dr. Georgie C. Labadie;
One member appointed by the President of the Senate
- The Honorable Ron Klein (D-Boca Raton) , alt. Kelly Skidmore;
One member appointed by the Speaker of the House
- The Honorable Dr. Robert Brooks, MD (elected Chair of the Panel);
One person representing the Commission on Aging with Dignity
- Jim Towey (aide to Gov. Lawton Chiles); alt. Jackie Roberts;
Two persons appointed by the Pepper Institute on Aging and Public Policy at FSU, including a member of the clergy
- Dr. Marie E. Cowart, alt. Dr. Penny A. Ralston;
- Dr. Leo Sandon;
One person representing the Health Quality Assurance Division of the Agency for Health Care Administration
- Marshall E. Kelley, alt. Dr. Susan Acker;
The Secretary of Elder Affairs, and one consumer representative appointed by the Secretary
- Secretary of Elder Affairs: E. Bentley Lipscomb (Executive Director, Florida AARP circa 1999), alt. June Noel
- consumer representative: Stan Godleski

In addition to these 22 members, the Panel invited bioethicist/journalist Kenneth Goodman, and Lofty Basta, MD, as advisors.

The Panel was responsible for changes in advance directives laws enacted in 1999 (see below).

(Meanwhile, back at Last Acts: Midwest Bioethics Center tracked the progress of state EMS-DNR protocols with the help of the ABA. In a March, 1999, newsletter, Midwest Bioethics produced a map of the US indicating that Florida's EMS-DNR protocols had been created by statute, but were limited to terminal diagnosis.)

1999

Aug-Oct.

In August, 1999, the Florida Panel for End of Life Care produces report and recommendations. By October, new legislation is passed based on those recommendations. Choice in Dying (a/k/a Partnership for Caring) hails its passage:

“The State of Florida recently amended the Health Care Advance Directives Act to expand the definition of when life-support may be withheld or withdrawn. Effective October 1, 1999, Florida residents may state, in a living will, their wishes regarding the providing, withholding, or withdrawing of life-prolonging procedures when they are in a terminal condition, an end-stage condition, or become persistently vegetative. Prior to these amendments, life-prolonging measures could be withheld or withdrawn only in terminal medical situations. Choice In Dying … recommends that Florida residents complete the new living will in order to ensure that end of life wishes are honored.”

Robert Brooks, MD, writing in a supplement to the February, 2000, issue of Clinical Cardiology, describes the bill signed into law in October, 1999:

"Do-not-resuscitate orders . . .will now be valid not only in the community when filled out, but in hospitals, nursing homes, hospices, and assisted living facilities as well. The law will prohibit health care facilities from having the patient fill out a new advance directive once they have (and provide) a current one. The statutes also add 'end-stage condition' as an additional condition that will permit the withholding or withdrawal of life-prolonging procedures. Pain will be encouraged as a “fifth vital sign” in health care facilities and offices. Also created is a new pathway whereby a person in a persistent vegetative state, who has no advance directive and no health care proxy or surrogate, may have life-prolonging procedures withheld or withdrawn. Physicians and other health care providers will be encouraged to take continuing medical education courses on end-of-life and palliative care through statutory changes, and the Departments of Health and Elder Affairs will both have new roles to play in additional education of providers and the public on end-of-life care. "

1999

Oct/Nov

RWJF launches Florida Partnership for End-of-Life Care: Samira Beckwith and Florida Hospices and Palliative Care (Tallahassee) receive $449,960 from RWJF to launch the Florida Partnership for End-of-Life Care. Part of the grant goes to the Univ. of Florida's College of Medicine Program in Bioethics, Law, and Medical Professionalism.

A description of the Partnership remains in the archive of the Midwest Bioethics site, here. Also read the two newsletters still online at the original Florida Partnership site. In addition, Florida Bioethics Network reported in their Summer, 2000, newsletter, that they would play a key role in the venture (Bill Allen of Florida Bioethics Network was co-investigator on the Florida Partnership project).

Five entities provided the nucleus of the Partnership:

Florida Hospices & Palliative Care in Tallahassee

Principal Investigator: Samira Beckwith, MSW (CEO of HOPE Hospice, Ft. Myers; President, FL Hospices & Palliative Care);
Project Director: Lynne Mulder (Executive Director, FL Hospices & Palliative Care);
Later: Susanne Homant from Michigan

Florida Department of Health

Freida Travis - EMS (had advised the Panel)

Florida Agency for Health Care Administration

Anne Menard, MSW

Florida Department of Elder Affairs

Linda Macdonald, MS

Bioethics departments at two universities (Florida Bioethics Network):
- University of Florida College of Medicine's Program in Medical Ethics, Law, and Humanities (later called the Program in Bioethics, Law, and Medical Professionalism)

University of Miami's Forum for Bioethics and Philosophy
- Kenneth Goodman, Ph.D. (philosophy, theoretical linguistics, journalism)

[At the same time, RWJF awards $450,000 to Susanne Homant, MBA, and Michigan Hospice & Palliative Care, to create the Michigan Partnership to Advance End of Life Care. Susan Homant would move to Florida where she would become executive director of Florida Hospices and Palliative Care, as well as registered lobbyist for NAMI Florida (National Alliance for the Mentally Ill). As head of FHPC, she would also lead the Florida Partnership for EOLC.]

Medical futility guidelines published by Health Council of South Florida

2000

June

Senator Ron Klein (D, Boca Raton; an endorsee of America Coming Together) introduced SB 1890 in March. By May 4 the bill passed both houses, and in mid-June was signed into law by the governor.

SB 1890 built on changes to advance directive statutes were initiated with the 1999 legislation. The 2000 bill made changes related to palliative care, including extending portability of DNR orders -- EMS to hospital. Extends portability of DNR orders; organ donation was added to health care surrogate form; removes the words "mentally and physically" in reference to capacity or incapacity.

See FBN newsletter, Summer, 2000, pg. 6 for details (article by bioethicists Jane Hendricks, JD)

2000

Sept

Moyers' On Our Own Terms

An August 2001 snapshot of the Florida Partnership web site shows that the Partnership's end-of-life coalitions were in gear prior to the September airing of the Moyers series. Coalitions were busy promoting the series and framing the issues in anticipation of community dialogue. For example, with the help of the local PBS affiliate, the Dade coalition created paycheck stuffers with information on the Moyers special.

Though Cyndi Ramal probably directed the Dade County coalition at the time of the Moyers series, this August 2001 directory indicates that Alex Fiuza became coalition leader later on. Fiuza is host of a program on Radio Paz, is community liaison for Catholic Hospice, and was high-profile on a national level as member of the board of advisors for RWJF-funded Diversity Resource Center in Washington DC. The Diversity Resource Center was one of the four resource centers for the national Rallying Points program. Fiuza was also Public Assistance Specialist with the Florida Department of Children and Families; Human Services Analyst for the Agency for Health Care Administration, and Elderly Services case manager for Dade County.

Mike Bell, listed as coalition leader for Pinellas County, was VP Development/Community Relations at Hospice for the Florida Suncoast; a member of Partnership for Caring; coordinator for all of the Florida coalitions; and would be on the advisory board for the Clergy End of Life Education Project.

Cathy Emmett, leader of the Manatee/Sarasota/DeSoto/Charlotte coalition, was also a member of the Florida Bioethics Network.

Florida Bioethics Network listed the coalition leaders as of January 2001:

Kim Willis - Escambia, Santa Rosa, Okaloosa, Walton, Holmes, Washington, Bay, Jackson, Calhoun, & Gulf
Laurie Ward - Gadsden, Liberty, Franklin, Leon, Wakulla, Jefferson, Madison & Taylor
Elaine Brown - Nassau, Duval, Clay, St. Johns
Judy Hury - Hamilton, Suwannee, Columbia, Baker, Union, Lafayette, Bradford, Gilcrest, Alachua, Dixie, Putnam, Levy
Suzanne Reynolds - Marion
Jennifer Bachman - Volusia & Flagler
Jean West - Citrus
Lee Hansen - Lake & Sumter
Sherri Blank - Seminole, Orange, Osecola
Hernando/Pasco - no active coalition in Jan. 2001
Marie Danser - Polk, Hardee, Highlands
Brevard - no active coalition in Jan. 2001
Mike Bell - Pinellas
Susan Lang - Hillsborough
Karen Lampert-Riley - Indian River
Cathy Emmett - Manatee, Sarasota, DeSoto, Charlotte [Cathy Emmett was affiliated with Florida Bioethics Network]
Mary Jane Kelly - Okeechobee, St. Lucie, Martin
Linda Nelson - Glades, Hendry, Lee, Collier
Sue Deakin - Palm Beach
Kim Parsley - Broward
Cyndi Ramal - Monroe, Dade

2000

June

The legislature also created an 18-member End-of-Life Care Workgroup to continue work begun by the Panel in 1998-99. The Workgroup made recommendations to the legislature in early 2001 (see Florida Bioethics Newsletter, Fall 2000 / Winter 2001; pg 8).

Agency for Health Care Administration: Susan Acker, R.N., Ph.D.
Florida Assisted Living Association: Henry Pearson
Florida Association of Health Maintenance Organization: Sharon Zill, Ph.D.
Florida Association of Homes for the Aging: Marshall Seiden
Florida Association of Insurance and Financial Advisors: Julia Herndon
Florida Department of Elder Affairs: Gema G. Hernandez, D.P.A., and Marshall Kelley
Florida Department of Health: Freida B. Travis
Florida Health Care Associations: Howard Tuch, M.D.
Florida House of Representatives: Representative Heather Fiorentino
Florida Hospital Association: Susan White, Ph.D.
Florida Hospices and Palliative Care, Inc: Samira Beckwith, MSW
Florida Life Care Residents Association: Peg Terbeek,
Member Florida Medical Association: Alvin E. Smith, M.D.
Florida Nurses Association: Cathy Emmett, ARNP
Florida Osteopathic Medical Association: JoAnne Bujnoski, D.O.
Florida Pharmacy Association: James Powers
Florida Senate: Senator Ron Klein
Florida State Oriental Medical Association: Richard Freiberg, D.O.M., D.Ac, Dipl. Ac.

The Workgroup's recommendations borrowed heavily from Last Acts, even quoting directly from "Precepts of Palliative Care" in order to define the term "palliative care."

2001

Jan

Karen Kaplan (Partnership for Caring) kicks off Rallying Points with a conference in California. Attending from Florida Partnership were:

Marty Ratliff, Project GRACE
Linda Nelson (SW Florida Coalition)
Liz Bradley, Dignity Memorial
Kathy Brandt, Hospice Institute of FL Suncoast
Sherri Blank, Central Florida coalition
Debbie Harley, Hospice of Volusia/Flagler CEO
Jennifer Bachman, Volusia/Flagler coalition
Casey Clark, Florida Partnership
Danielle Hopkins, Florida Partnership

2002

Tampa: Center for Hospice, Palliative Care and End-of-Life Studies. USF collaborative with Hospice of the Florida Suncoast, LifePath Hospice in Tampa, and Moffitt Cancer Center. (Susan McMillan, University of South Florida professor, was a principal in the Center's founding. McMillan was PI for two NIH grants at University of South Florida, totalling over $1.2 million from 1995-2001) Opening conference: Mary Raymer (PDIA; NHPCO; Michigan Hospice), Florence Wald (PAS proponent); Susan McMillan, Ronald Schonwetter.

2002

At regional meeting of Last Acts in Tampa, NAACP announces it has joined Last Acts

2002

July

Statewide Hospice Clergy Education Enhancement Project is launched. The 1999 Panel had recommended EOL educational programs, so the legislature followed up with appropriations for a Clergy Education project. The Hospice Foundation of America directed the project, which was later dubbed Clergy End-of-Life Education Project, and the Department of Elder Affairs (Terry White and Linda Macdonald) provided administration.

The EOL coalitions of the Florida Partnership helped identify trainers.

2002

Nov.

November 22: Ronald Cranford, MD testifies at the request of Michael Schiavo. Dr. Cranford had been a board member of Choice in Dying. (Choice in Dying is the special interest group that changed its name to Partnership for Caring in 2000).