Wanzer, S. H., D. D. Federman, S. J. Adelstein, C. K. Cassel, E. H. Cassem, R. E. Cranford, E. W. Hook, B. Lo, C. G. Moertel, P. Safar, and et al. "The Physician's Responsibility toward Hopelessly Ill Patients. A Second Look." N Engl J Med 320, no. 13 (1989): 844-849.

This was a "second look" at the issue of assisted suicide, as addressed in the 1984 article also titled "The Physician's Responsibility toward Hopelessly Ill Patients." This 1989 article is generally recognized as a reference in support of physician-assisted suicide.

World Health Organization defines "palliative care" as "the active total care of patients whose disease is not responsive to curative treatment . . . [when] control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount."  [WHO (World Health Organization). Cancer Pain Relief and Palliative Care. WHO Technical Report Series 804. Geneva: WHO, 1990.]

Patient Self-Determination Act -- Sponsored by Sen. John Danforth, R-MO. Danforth's advisor was Myra Christopher, now at the Center for Practical Bioethics (formerly known as the Midwest Bioethics Center). Myra Christopher and Midwest Bioethics later become key players in Last Acts. [ 1999, Community-State Partnerships, below.]

Cruzan case decided; Nancy Cruzan dies. This has been called the first Supreme Court right-to-die case, and established the precedent for the Oregon assisted dying law. 

Radford professor Matthew J. Franck explains that the Cruzan decision set the stage for Terri Schiavo's death. From an opinion piece in National Review, March 30, 2005:.

At first glance the Cruzan decision may have seemed to be a pro-life ruling. After all, the immediate effect was to keep Nancy Cruzan alive, and to endorse, in the law, a state's presumption in favor of life. The hysterical ire of four dissenting justices who wished to make death an easier choice seemed to bolster the good-news interpretation of Cruzan at the time. And the Court's opinion by Chief Justice William Rehnquist did hold that "a State may properly decline to make judgments about the 'quality' of life that a particular individual may enjoy, and simply assert an unqualified interest in the preservation of human life."

The sentence I just quoted did not end there, however, but continued as follows: "to be weighed against the constitutionally protected interests of the individual." And therein lies the twofold failure of Rehnquist's reasoning in this case.

First, the chief justice identified the "preservation of human life" not as a principle but as a mere "interest," however "unqualified" with respect to "'quality' of life." And unlike principles, which a court vindicates and defends against violation, interests, as Rehnquist noted, are to be "weighed" against other interests. This is the ordinary work of legislators, but here Rehnquist embraced the trend of recent decades that it is also the work of judges when deciding constitutional cases.

What is the "constitutionally protected interest" that is to be weighed in the balance against the state's interest in life? Here is Rehnquist's second error, and the one that sets us on the road to the deathwatch in Pinellas Park, Florida. Holding, on the thinnest basis in precedent, that under the Fourteenth Amendment "a competent person has a constitutionally protected liberty interest in refusing unwanted medical treatment," the chief announced with astonishing casualness that "for purposes of this case, we assume that the United States Constitution would grant a competent person a constitutionally protected right to refuse lifesaving hydration and nutrition."

William Colby represented the Cruzan family, demanding Nancy Cruzan's removal from life support.  William Colby would become a fellow at Midwest Bioethics Center, and would tour hospices as a speaker for Rallying Points.  (1999, Community-State Partnerships, below)

Christine Cassel, MD; Diane Meier, MD; Timothy Quill, MD, produce some of the first published guidelines for assisted suicide: "Care of the hopelessly ill: Proposed clinical criteria for physician-assisted suicide." New England Journal of Medicine, November 5, 1992; 327(19): pp. 1380-4.

Six years later Cassel, Quill, and Meier team up with Sean Morrison to author a "Survey of Physician-Assisted Suicide and Euthanasia," published in NEJM. Meier's letter claiming a "change of heart" on PAS is published in the New York Times immediately after. The next year (1999), the Robert Wood Johnson Foundation grants Meier and Cassel nearly $5 million to found the Center to Advance Palliative Care (CAPC).

There were two waves of funding for FIA:  Faith in Action II (or "Generation 2") authorized $40 million from 1993-1999.  FIA III (1999-2002) authorized $50 million.

Next: see Faith in Action (in February 2001: national program office moves to Wake Forest University in North Carolina).

IOM had been asked to "develop guidelines for identifying and limiting futile treatments" (see "Preface" at http://books.nap.edu/html/approaching/). This workshop determined whether development of guidelines would be feasible. Funded by Commonwealth Fund, in anticipation of SUPPORT results.
Presenters included: Christine Cassel, Kathleen Foley, Robert Burt, Barbara Koenig, and Neil MacDonald.  Joanne Lynn and Joan Teno gave a presentation on SUPPORT (two years before publication of SUPPORT results).

Choice in Dying directs a 5-year project: Integrating Education about Care of the Dying into Existing Medical School Programs. Supported by a grant of over $349,000 from the Greenwall Foundation, Karen Kaplan reported (Transforming Death in America, 2001) that the project "provided a laboratory for 12 medical schools in which they could experiment with various approaches to improving existing curricula about end-of-life care." Participants included

National Hospice Work Group (NHWG) is founded.   True Ryndes, RN, who was a board member of Partnership for Caring, was President and CEO of the NHWG.
The Spring, 2001, Partnership for Caring newsletter describes NHWG:
http://www.partnershipforcaring.org/Resources/pdf/spring2001.pdf

"The National Hospice Work Group was founded six years ago to increase access to hospice and palliative care. It is a coalition of 20 progressive hospice programs around the country whose members include activists who pioneered the hospice movement in the ‘70s and '80s and those who provide fresh professional insights from other industries. . . .

Productive and Proactive
The National Hospice Work Group functions as both a 'think tank' and a 'work tank.'  Its members meet four times a year to share 'best practices.' Best practices are demonstrated ways to provide cost-effective care while maintaining excellent patient outcomes. The Group also develops federal policy recommendations and constructs tools that the hospice community can use to demonstrate the benefits of hospice care."

April: Ira Byock, in American Journal of Hospice and Palliative Care:
http://www.dyingwell.com/prnh.htm

"In my own practice, while I steadfastly refuse to write a prescription with lethal intent or otherwise help the patient commit suicide, I can share with the patient information that he or she already has the ability to exert control over the timing death. Virtually any patient with far-advanced illness can be assured of dying -- comfortably, without any additional physical distress -- within one or two weeks simply by refusing to eat or drink."

Soros's first round of Open Society Institute and Project on Death in America Faculty Scholars include:

Soros' foundation hosts conference at Project on Death in America headquarters: Cummings, RWJF, Commonwealth, AARP and others ("Grantmakers Concerned with Care at the End of Life"). Participants included:

Susan Block, M.D., Soros/PDIA Faculty Scholars program;
Thomas Bryant, M.D., J.D., Non-Profit Management Associates, Inc.;
Christine Cassel, M.D., Milbank Memorial Fund, and Mt. Sinai Medical School Dept of Geriatrics;
Susan Clark, Columbia Foundation;
Karen Davis, Commonwealth Fund;
John Feather, AARP Andrus Foundation;
Kathleen Foley, M.D., Soros/PDIA;
Rosemary Gibson, Robert Wood Johnson Foundation;
David Gould, Ph.D., United Hospital Fund;
Charles Halpern, Nathan Cummings Foundation;
Herbert Hendin, American Suicide Foundation;
Andrea Kydd, Nathan Cummings Foundation;
Thomas Layton, Gerbode Foundation;
Elizabeth Lorant, Soros/Open Society Institute;
Joanne Lynn, M.D., MA, MS., Soros/PDIA board member;
Len McNally, NY Community Trust;
Donald Murphy, M.D., Colorado Collective for Medical Decisions;
Aryeh Neier, Soros/Open Society Institute;
Patricia Prem, M.S.W., Soros/PDIA;
David Rothman, Soros/PDIA;
Fenella Rouse, J.D., Kornfeld Foundation and Mayday Fund;
William Stubing, Greenwall Foundation;
Charles Terry, Rockefeller family; and
Mary Ann Zehr, Council on Foundations

EPEC Project (Education for Physicians on End-of-Life Care)
Linda Emanuel [who was raised and educated in England; degrees from Oxford and Cambridge], develops the EPEC curriculum with Charles F. von Gunten, MD, PhD; Frank D. Ferris, MD [Canadian]; and Russell Portenoy, MD.

RWJF invested $5 million. Soros/PDIA supported the additional leadership through faculty scholarships: von Gunten was PDIA faculty scholar in 1995; Ferris and Portenoy would be named faculty scholars in 1998.

Project 2010 ("Five Wishes;" in Florida) is launched with a grant of $398,000 from RWJF to James Towey's Commission on Aging with Dignity.  This project is credited with inspiring the creation of Community-State Partnerships (below), headed by Midwest Bioethics.

The year 2010 is (roughly) the year in which Baby Boomers will begin reaching the age of 65 (and going on Medicare).  Five Wishes is a type of advance directive that is loosely worded in comparison to many other advance directive forms, and which encourages discussion about a person's "wishes" for his or her end of life decisions.

RWJF awards $297,000 grant to the Center for Applied Ethics and Professional Practice (CAEPP) at the Education Development Center (EDC) in Massachusetts, to convene the National Task Force on End-of-Life Care for Patients in Managed Care, "23 experts in health care policy, managed care, geriatrics, long-term-care, bioethics, palliative care, medicine and nursing, and hospice."  The Task Force convened in three times during 1997, and reviewed surveys from "all managed care organizations in the United States providing capitated services to Medicare enrollees."

In May, 1999, the Task Force would produce a widely publicized report, Meeting the Challenge:  Twelve Recommendations for Improving End of Life Care in Managed Care.

Steering committee: Steven Miles, Bruce Jennings, and Mildred Solomon (EDC); committee members included Ira Byock, Joanne Lynn, Kathleen Foley. 

[Next:  Meeting the Challenge  is published and five managed care firms are on board.]

On 9/24, Rep. Ralph Hall (D-TX) introduces Assisted Suicide Funding Restriction Act (HR 4149); and in the Senate,  Sen. Byron Dorgan (D-ND) introduces the same bill S. 2108; (104th Congress).  Both HR 4149 and S 2108 contained the following proviso:

SEC. 3. RULE OF CONSTRUCTION.
Nothing in this Act, or in an amendment made by this Act, shall be construed to create any limitation relating to--

1. the withholding or withdrawing of medical treatment or medical care;
2. the withholding or withdrawing of nutrition or hydration;
3. abortion; or
4. the use of an item, good, benefit, or service furnished for the purpose of alleviating pain or discomfort, even if such use may increase the risk of death, so long as such item, good, benefit, or service is not also furnished for the purpose of causing, or the purpose of assisting in causing, death, for any reason.

The bills were introduced again in the 105th Congress, this time with Ashcroft (R-MO) as co-sponsor of the Senate bill.  The bill would become law in April, 1997.

Congress of Clinical Societies: Conference on the Ethics of Managed Care (fourth in a series that began in 1987); held on October 7.

"The conference brought together leading scholars in medical ethics, health policy, law, and medicine with representatives of the managed care industry to discuss how the integrity of medical practice could be maintained and strengthened in managed care settings during a time of dramatic change in the health care delivery system." [http://www.rwjf.org/reports/grr/028153s.htm ]

Joseph J. Fins organized the conference; Speakers included Joanne Lynn and Daniel Callahan.
Hosted by American Geriatrics Society and Hastings Center.
Funding: RWJF grant #28153 for $49,000 to American Geriatrics Society.

November 23: IOM's Committee on Care at the End of Life" - Public Hearing #2, at National Academy of Sciences, Irvine, CA  (developing futility guidelines; led to publication of  "Approaching Death" in June, 1997)   Again led by Christine Cassel; panelists included:  Alicia Super, RN (Supportive Care of the Dying); Richard Della Penna,  MD (Kaiser Permanente); Betty Ferrell (City of Hope National Medical Center); Steven Miles (U. of Minn. Center for Bioethics); Susan Tolle (Oregon Health Sciences Univ.); Neil Wenger, M.D. (UCLA Medical Center Ethics Committee).

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Updated on September 22, 2009 7:08
Unpublished work © Copyright 2004-2009  I. Whitlock.