Editor’s note: The following article is by Diana Lynne, whose powerful, comprehensive book on Terri Schiavo’s life and death, entitled “Terri’s Story: The Court-Ordered Death of an American Woman,” is now available at WorldNetDaily’s online store.
In June of 1997, the United States Supreme Court ruled the Constitution does not grant Americans the right to assisted suicide under the Fourteenth Amendment but simultaneously reaffirmed citizens have a constitutionally protected right to refuse lifesaving hydration and nutrition, along with other medical treatments. The decision was hailed by both advocates for the right to die and the right to life. The latter cheered that the door was closing on legalized assisted suicide. Right-to-die activists welcomed the fact the justices left the door ajar, by deferring to the states to legislate the prickly issue.
“Throughout the nation, Americans are engaged in an earnest and profound debate about the morality, legality and practicality of physician-assisted suicide,” the late Chief Justice Warren Rehnquist wrote in the opinion in Washington v. Glucksberg. “Our holding permits this debate to continue, as it should in a democratic society.”
One month later, the Florida Supreme Court also said “no” to assisted suicide, overturning a lower court ruling. The judges found the state’s interest in preserving life, preventing suicide and upholding the integrity of the medical profession outweighed the privacy rights of 35-year-old AIDS sufferer Charles Hall. The 5-1 decision dealt a blow to the pro-euthanasia Hemlock Society, which recruited Hall as a plaintiff, and the American Civil Liberties Union, which provided his legal counsel to challenge Florida’s 1869 ban on assisted suicide. Down the drain went a reported $100,000.
Buoyed by the lower court ruling in favor of Hall, Florida Hemlock Society had hit the phones, hoping to capitalize on it. The organization contacted all 160 state lawmakers looking for a sponsor of legislation similar to what passed in Oregon via ballot referendum in 1993. While a half-dozen lawmakers were willing to co-sponsor the bill, none would agree to file it, according to the Tampa Tribune. Then the state Supreme Court ruling torpedoed the fledgling effort.
Meanwhile, other right-to-die proponents saw the opening of a back door in the landmark Washington v. Glucksberg decision and approached state lawmakers with a different angle. The justices had given tacit approval of the “double effect” phenomenon, concluding that death hastened by increased palliative measures, or high doses of sedatives, does not constitute prohibited conduct as long as the intent is to relieve pain and suffering.
With legal cover now provided for incidents in which pain killers kill the patient, death-with-dignity advocates began promoting what’s called the “third path” alternative to assisted suicide. The “third path” involves the refusal or withdrawal of medical treatment – including both artificial and natural provision of hydration and nutrition – and proper palliative care, including pain management, during the ensuing “dying process” to be provided by hospice.
The hospice industry spearheaded the promotion of the “third path,” and the Hospice of the Florida Suncoast in Pinellas Park, Fla. – considered the largest non-profit hospice in the world – played a leading role in the late 1990s. The right-to-die attorney representing Michael Schiavo’s effort to remove his wife’s feeding tube, George Felos, was on the board at the hospice, and served as its chairman between 1996 and 1998. Terri Schiavo spent the last five years of her life at this hospice.
The “third path” movement gained the backing of a consortium of large, private foundations like George Soros’ Open Society Institute through its Project on Death in America and the Robert Wood Johnson Foundation. Between them, Soros’ PDIA and the RWJF invested nearly $200 million throughout the 1990s with the goal of “transforming the culture of dying.” The money trail of this end-of-life care campaign, exhaustively researched by the pro-life Christian education ministry Life Tree, Inc., and graphically presented on its website, tracks the evolution of the effort beginning in 1989.
“Few people realize the vital role private foundations play in promoting societal change. More often than not, major shifts in public attitudes and public policy come not from grass-roots clamor but rather from the hard work of a committed few activists with the ideas and the donors who fund them,” euthanasia foe Rita Marker, with the International Task Force on Euthanasia and Assisted Suicide, commented in Philanthropy. “Without the money that is the mother’s milk of public advocacy, those inspired to agitate for change would not get very far. The assisted suicide/euthanasia movement typifies this phenomenon.”
Findings from a five-year $28 million study provided the planks of the RWJF campaign to effectuate change in attitudes and laws relating to death called Last Acts initiative:
- Too often, patients die alone, in pain, and hooked up to machines
- The health care system doesn’t know when or how to stop treatment of dying patients
- The tools experts said would improve care for these patients [e.g. living wills] didn’t work
“Last Acts will be much more than platitudes about a good death,” RWJF president Steven Schroeder pledged at a Last Acts conference in October 1997, according to a report of the conference posted on RWJF’s website.
“It will push for specific reforms across the board – reforms that, if successful, will involve millions of Americans.”
RWJF tapped Partnership for Caring to be the national program office of Last Acts, awarding the right-to-die organization a $1 million grant. Partnership for Caring was formerly known as Choice in Dying, a modern-day reincarnation of the 20th century Euthanasia Society of America, Marker revealed through research into the organization’s articles of incorporation.
Felos was a founding member of the National Legal Advisors Committee for Choice in Dying. Fellow Hospice of the Florida Suncoast board member and president Mary Labyak served as corporate secretary and treasurer for Partnership for Caring, according to industry watchdog, Hospice Patients Alliance. In January 2004, Partnership for Caring merged with RWJF’s Last Acts and the resulting entity was named Last Acts Partnership.
RWJF also doled out grants totaling $420,680 through the Last Acts initiative to the National Hospice and Palliative Care Organization, where Labyak was national director and treasurer.
RWJF designated Hospice of the Florida Suncoast as one of three regional resource centers across the country for a new initiative of the Last Acts campaign called “Rallying Points.” Through its Rallying Points role, the hospice served as a mentor to regional community coalitions working to improve care for the dying.
In September 1997, RWJF set its sights on reforming state governmental policy. A short three months after the U.S. Supreme Court’s decision to turn the matter of physician-assisted suicide over to the states, the foundation designated a grant of $149,486 to the National Conference of State Legislatures (NCSL) in Washington, D.C., to draft guidelines for state legislators to follow in crafting new end-of-life legislation. The guidebook NCSL distributed poses the question: “What do model laws legalizing assisted suicide look like?”
By early 1998, RWJF pumped $11.25 million into 21 community-state partnerships established to “remove policy and practice barriers that impede good end-of-life care.” Four more partnerships would be added by 2003. With the NCSL’s guidebook and an average grant of $450,000, these community-state coalitions hit the ground running in Alabama, California, Connecticut, District of Columbia, Florida, Hawaii, Iowa, Kansas, Kentucky, Maine, Michigan, Minnesota, Nevada, New Hampshire, New Jersey, North Carolina, North Dakota, Oklahoma, Rhode Island, Utah and West Virginia.
According to RWJF’s Last Acts grant reports, Florida was among the earliest states to establish its End-of-Life community-state partnership. Sometime in 1996 or 1997, the RWJF grant of $449,960 was awarded to Florida Hospices and Palliative Care, a network of all the hospices in the state, which established the Florida Partnership for End-of-Life Care.
By May of 1998, the RWJF-funded End-of-Life organization obtained rare authority from the Florida legislature to amend the advance-directive state statute laid out in Chapter 765.
The state House Elder Affairs & Long Term Care committee voted unanimously to pass HB 3387, a measure designating memory-disorder clinics in Palm Beach and Leon Counties to serve Alzheimer sufferers. Seemingly tacked onto the bill at the last minute, was a provision that created of a 22-member panel at the Pepper Institute on Aging and Public Policy at Florida State University to conduct a study of end-of-life care. As the analysis of the bill describes, the panel would include representatives from hospice, nursing homes, assisted living facilities, hospitals, physicians, nurses, government officials and consumers. Labyak would be among the first named panelists.
This Panel for the Study of End-of-Life Care was directed to submit an interim report to the governor, president of the senate and speaker of the house in six months and a final report within the year, by Aug. 1, 1999. HB 3387 was filed with the secretary of state on May 29, 1998, and became law without the governor’s approval on May 30, 1998.
Days earlier, Felos had filed Schiavo’s original petition to withdraw Terri’s feeding tube. He cited the privacy-rights provisions in the Florida Constitution and the Fourteenth Amendment to the U.S. Constitution, as well as Chapter 765 of the Florida statutes, as justification for why Terri was “entitled to have artificial sustenance discontinued.”
Chapter 765, however, didn’t provide for the specific removal of artificial nutrition and hydration – feeding tubes – at the time, and also required the patient from whom life-prolonging medical procedures could be withdrawn to be terminal.
Florida constitutional law was on Felos’ side. In a 1990 Florida Supreme
Court ruling in his prior right-to-die case, In re Guardianship of
Browning, the court concluded, “a competent person has the
constitutional right to choose or refuse medical treatment, and that right
extends to all relevant decisions concerning one’s health.” Although the
elderly stroke victim died before the case made it up to the state’s high
court, the ruling would have authorized the removal of Estelle Browning’s
feeding tube even though she was not terminally ill, in accordance with her
written advance directive.
Statutory law, namely Chapter 765, needed to be brought in line with
constitutional law. Lawmakers were struggling to do that. During the 1989 legislative session, Rep. Jim King, R-Jacksonville, co-sponsored a bill that would have allowed the attending physician and another doctor to remove feeding tubes from patients with terminal conditions if they determined such sustenance was a life-prolonging procedure.
The bill had the backing of the Florida Medical Association, Florida Nurses Association, Florida Hospice, the Florida Council on Aging and the Silver-Haired Legislature. Opposition from the Florida Catholic Conference and Florida Right to Life was customarily stiff. In the end, Gov. Bob Martinez vetoed the landmark legislation, in part because he was “concerned about the complexity of the human condition in the circumstances covered by the legislation, and the medical, ethical, social and technological advances which relate to this subject.”
The Florida Right to Life president at the time, Ken Connor, who would later serve as counsel to Jeb Bush in the Schiavo case, applauded Martinez’s veto but predicted: “The euthanasia juggernaut has been derailed, but it will be back.”
Flash forward 10 years to the RWJF-funded, legislature-mandated End-of-Life Panel. Although it was lauded by its chairman for having a heterogeneous composition, the panelists’ background information reveals that, in terms of ideology, participants were more of one mind than a hodge-podge of disparate views. The cross-pollination of professional experiences suggests several of the panelists shared the goals of Last Acts – changing laws to foster and institutionalize palliative care and the “third path” to dignified death; expanding access to hospice and minimizing death at hospitals; and promoting widespread use, recognition; enforcement and liability protection for enforcement of advance directives.
Noticeably absent in the legislature’s mandate for the composition of the panel was any representation of pro-life and disability rights organizations, like Florida Right to Life and Not Dead Yet. Consequently, critics accuse lawmakers of creating a “stacked deck” on the panel charged with the important task of dictating end-of-life law, which would impact all Floridians.
The panel also deviated from its legislative mandate and elected to solicit input from 17 nonvoting advisors whom it invited to join in the discussions at the meetings. While this board of advisors included one representative of the Florida Catholic Conference, the addition of other bioethicists, hospice representatives and right-to-die proponents further skewed the collective thinking.
Among the advisors was Kenneth Goodman, the director of the Bioethics Program at the University of Miami. Goodman recently served as the keynote speaker at the Florida State Guardianship Association’s conference at which Michael Schiavo was awarded Guardian of the Year.
“Frankly, what he said his wife wanted is what most reasonable people want,” the Orlando Sentinel quoted him as saying. “It’s primitive to believe that human consciousness is not important. What most of us value about life is cognition and communication and interaction. We don’t value simply not being dead.”
According to the minutes of panel meetings, bioethicist Bill Allen with the University of Florida College of Medicine was invited to address the group on Sept. 15, 1998. Allen later expressed the opinion on MSNBC’s “Scarborough Country” that Terri Schiavo was no longer a person following her brain-injury.
Over its 13-month existence, the panel hosted seven public hearings throughout the state to gauge Floridians’ sentiment on the issues. The panel also met 10 times to hash out recommendations for the legislature. Minutes of the panel meetings show a chief concern among panelists and advisors, which repeatedly surfaced at the public forums, was the need to better define or scrap the “terminal” requirement for life-prolonging procedures to be refused or withdrawn, and to lower the requirement of two physicians certifying a patient as terminal to one physician.
“Why do I have to be terminal in order to have my medical wishes respected if I’m 80 years old, have led a good life and recorded those decisions when I was still competent?” panel chairman Dr. Bob Brooks asked rhetorically, according to the South Florida Sun-Sentinel.
Ultimately, 21 of 22 panelists voted to remove the terminal requirement from Chapter 765, which critics argued would have effectively made the advance-directive process a backdoor, of sorts, to assisted suicide. Jim Towey, founder of the Florida Commission on Aging With Dignity, was the lone dissenter.
“We shouldn’t be making this dramatic change until we have heard more from the disabled, the poor, the elderly,” Towey argued. “Those groups aren’t worried about getting too much care. They are worried about getting any care at all.”
On Jan. 31, 1999, the End-of-Life Panel released its interim report, outlining a total of 24 recommendations. The key recommendations were to drop the “terminally ill” requirement; reduce the certification requirement from two physicians to one in the presence of an advance directive; standardize the Do Not Resuscitate order and make it portable; protect provider actions taken in accordance with advance directives; and expand access to and education about palliative care and pain management. Additionally, the panel unanimously endorsed the following goals:
- The right to refuse treatment and the patient’s right to make decisions about his or her care and his or her surrogate’s right to carry out the patient’s wishes when he or she is no longer capable of decision making.
- The right to die without aggressive curative treatment does not equal an obligation to die at any age or with any disability. This right is about supporting an individual’s right to make choices along the life continuum in the context of their values, their beliefs, and their situations.
While these objectives reference the “right to die” and the “right to refuse treatment” in general terms, no specifications were provided as to what treatment the panelists’ viewed to be eligible for removal. Specifically, feeding tubes, or artificial nutrition and hydration, were not mentioned in the panel’s recommendations.
With the recommendations in hand, the legislative members of the panel went back to Tallahassee to work within their respective committees to craft legislative proposals. On the House side, the resulting bill was co-sponsored by Rep. Gus Bilirakis, R-Palm Harbor, who is a past board member of both the Hernando/Pasco County Hospice and the Hospice of the Florida Suncoast board of directors.
Meanwhile, after abandoning its effort to lobby for an assisted-suicide law, the Florida Hemlock Society crafted proposed legislation that sought protection from liability for physicians dispensing high doses of sedatives. The organization decided to team up with panel-member Towey and promote his “third path” alternative.
Both bills that subsequently came out of the Senate and House committees went beyond the recommendations spelled out in the End-of-Life Panel’s interim report and redefined “life-prolonging procedure” to specifically include “artificially provided sustenance and hydration.”
While the summary of the House bill claims the End-of-Life Panel specifically recommended the feeding-tube provision, the Senate bill links the provision to the general goals unanimously endorsed by the panel of “the right to refuse treatment” and “the right to die without aggressive curative treatment.”
Kelly Skidmore, legislative aide to bill sponsor and End-of-Life Panel member Sen. Ron Klein, D-Delray Beach, described the bill drafting process as very collaborative and could not recall where the feeding-tube provision came from.
“It could have come from hospice,” she ventured. “Just like any piece of legislation, once it has been put into bill drafting, then everybody has the opportunity to say, ‘Put this in’ or ‘Put that in.’ … It could have come from another member of the legislature who for whatever reason wanted [the provision] – I’m not saying that happened with this particular piece of legislation.”
For former House majority leader Jim King, who was elected state Sen. King while the legislature was hammering out the changes to 765, it was an opportunity to tie up unfinished business regarding the removal of feeding tubes dating back to 1989. His chief legislative aide said the removal of feeding tubes is something he would have advocated in 1999.
King was applauded by the Hemlock Society, renamed End-of-Life Choices, for his reluctance to support “Terri’s Law,” which passed while he was president of the state senate in 2003. He has since called that “the worst vote” he ever made. His biography posted on the Florida government website lists him as the current president of the board of directors of Florida Hospice and Palliative Care, which coordinated the creation and management of the End-of-Life Panel. His Honors and Awards list includes the Hospice Hall of Fame Award.
Wherever it came from, this lone revision, which proved fatal for Terri Schiavo, meant feeding tubes could now be pulled from patients pursuant to the conditions laid out in the advance-directive law. Apparently under the cover of the End-of-Life Panel, the 1999 Florida legislature succeeded in quietly accomplishing what Rep. King and others had struggled to achieve for a decade.
During floor debate, lawmakers were more focused on a raging fight over the proposed removal of the “terminal” requirement. The Florida Catholic Conference and Gov. Bush had balked at the panel’s recommendation to scrap the term. Legislators reportedly scrambled to strike a compromise in the final hours of the session and wound up putting “terminal” back in the measure, but modifying it according to the Senate bill.
As a result of the compromise, the legislators came up with very specific changes to Florida Statute, Chapter 765. In addition to “terminal,” two other conditions were added as triggers for the advance-directive protocol: An “end-stage condition,” such as advanced Alzheimer’s dementia, and “persistent vegetative state.”
The compromise was seen as necessary protection for the disabled and other vulnerable citizens. Curiously, however, legislators had honed in on the very diagnosis given to Terri Schiavo.
By April 29, 1999, a speedy 90 days after the panel filed its interim report, Gov. Bush had added his signature to the legislation and Florida law was changed, effective Oct. 1, 1999. Less than four months later, Felos stood in court at the trial for the petition to remove Terri’s feeding tube and declared it was “the law in Florida” that artificial provision of sustenance is considered medical treatment.
WorldNetDaily has been reporting on the Terri Schiavo story since 2002 – far longer than most other national news organizations – and exposing the many troubling, scandalous, and possibly criminal, aspects of the case that rarely surfaced in news reports. Just released from WND Books, the definitive book on the Terri Schiavo saga, titled “Terri’s Story: The Court-Ordered Death of an American Woman.” Author Diana Lynne tells a powerful, insightful, and ultimately heartbreaking story. This eye-opening book provides the background and depth missing in most of the national news coverage of the pitched battle over the life of Terri Schiavo.
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