Two Decades to an American Culture of Death

President's Commission for the Study of Ethical Problems in Medicine (established by Pres. Carter in 1979) publishes "Deciding to Forego Life-Sustaining Treatment." Alexander Capron, executive director; Joanne Lynn, project director. Both Capron and Lynn were board members of Concern for Dying.

The commission addressed living wills, "natural death acts," benefits of durable power of attorney. The commission also recommended model bill to establish hospital ethics committees.

Colorado Governor Richard Lamm, addressing the Colorado Health Lawyers Association, declares that elderly people have a "duty to die." 

"Like leaves which fall off a tree forming the humus in which other plants can grow, we've got a duty to die and get out of the way with all of our machines and artificial hearts, so that our kids can build a reasonable life."

New England Journal of Medicine publishes "The Physician's Responsibility toward Hopelessly Ill Patients." ( 310, no. 15 pp. 955-9). The article was the result of a conference at the Countway Library in Boston, convened by the Society for the Right to Die. The article's ten authors were:

• Sidney H. Wanzer, M.D., Department of Medicine, Emerson Hospital, Concord, Massachusetts.
• S. James Adelstein, M.D., Professor of Radiology and Dean for Academic Programs, Harvard Medical School.
• Ronald E. Cranford, M.D., Director, Neurological Intensive Care Unit, Hennepin County Medical Center, Minneapolis, and Chairman, Ethics Committee, American Academy of Neurology.
• Daniel D. Federman, M.D., Professor of Medicine, Harvard Medical School, and past president, American College of Physicians.
• Edward Hook, M.D., Chairman, Department of Medicine, University of Virginia Medical Center, Charlottesville.
• Charles G. Moertel, M.D., Chairman, Department of Oncology, Mayo Clinic and Medical School, Rochester, Minnesota.
• Peter Safar, M.D., Director, Resuscitation Research Center, University of Pittsburgh Medical School.
• Alan Stone, M.D., Professor of Law and Psychiatry, Harvard Law School.
• Helen B. Taussig, M.D., Professor Emeritus of Pediatrics, Johns Hopkins University School of Medicine.
• Jan van Eys, M.D., Department of Pediatrics, University of Texas System Cancer Center and School of Medicine.

In 1989 NEJM would publish a sequel, titled The Physician's Responsibility toward Hopelessly Ill Patients: A Second Look, with many of the same authors. The 1989 article would be a defense of physician assisted suicide. (see March, 1989)

American Health Decisions (AHD) is founded.  It is a "civic bioethics initiative" of the Hastings Center.  This "health decisions movement" was the pseudo-grass-roots movement upon which the Midwest Bioethics Center based their Community-State Partnerships end-of-life coalitions.  AHD's John Stanley (of Wisconsin Health Decisions; see Appleton Consensus, below), would be prominent in the second Last Acts Leadership Conference.  Michael Garland and Ralph Crawshaw (Oregon Health Decisions; founded 1982-3) would be featured in the first  Community-State Partnership policy brief, because Oregon Health Decisions provided a model for C-SP.  Oregon Health Decisions (OHD*) "carefully designs community meetings to help citizens identify values."

* "OHD" is also a commonly used abbreviation for Oregon Health Department. However, in the present website and timeline, we will refer to OHD as Oregon Health Decisions, following the lead of literature from the Midwest Bioethics Center (Center for Practical Bioethics).

Lawrence University Program in Biomedical Ethics (Appleton, Wisconson) invited representatives from ten countries to create "international guidelines for treatment abatement procedures."  Joanne Lynn (SUPPORT) was one of five writers on the drafting committee.  Other participants included:  Pieter V. Admiraal, M.D., Ph.D. (euthanasia advocate); Robert Arnold, MD (2005 president of AAHPM); Ronald Cranford, MD; Howard Brody, MD; Stuart Youngner, MD; Susan Wolf, JD (Hastings Center); John J. Paris, S.J., Ph.D., Ph.L; John Stanley, PhD.

This second conference discussed the two concerns that arose from the 1987 conference (see above).  A preliminary draft of  Appleton Consensus: Suggested International Guidelines for Decisions to Forgo Medical Treatment was drafted in 1988.  The document was revised, and was finally published in 1989; first in Denmark, then in the US.

Professor John Stanley's "study edition" of the 1988 Appleton Consensus statement is available at the Lawrence University web site, and includes commentary from conference members.   The final edition was published in the September 1992 edition of The Journal of Medical Ethics (Volume 18: Supplement, pp. 1-22).

Four "prima facie moral values or principles" of bioethics predicated the discussion:  autonomy; non-maleficence (avoid harm); beneficence (do good); justice.   We have provided a few samples from the final version, and have underscored some recurring themes.  There is a "conscience clause," but in this case the conscientious objector would be the physician who objects to requests to continue life-prolonging treatment.   Part II addresses "Active Euthanasia:

"Intervention with the primary intention of causing death (as distinguished from forgoing treatment that is deemed inappropriate) has no place in the treatment of permanently incapacitated patients. However, vigorous treatment to relieve pain and suffering may well be justified, even if these interventions lead to an earlier death."

Funding sources included:  The Novus Health Group, the Appleton Medical Center Foundation Inc; The Raymond Carlson Trust; St. Elizabeth Hospital (Ministry Health Care, Milwaukee, sponsored by the Sisters of the Sorrowful Mother); the Theda Clark Regional Medical Center; the Wisconsin Humanities Committee; The Henry J. Kaiser Family Foundation (Menlo Park, California); The Upjohn Company; the CIBA Pharmaceutical Company; Medtronic, Inc. (makes pacemakers); Lawrence University; the British Medical Association; the University of Leiden Medical School Programme in Medical Ethics, and The Madsen Foundation (Copenhagen, Denmark).

Academy of Hospice Physicians is launched at an International Hospice Institute meeting in Granby, Colorado.  AHP would become  American Academy of Hospice and Palliative Medicine (AAHPM) in 1996.   AAHPM's web site notes:  "The Academy [of Hospice Physicians] was the first physicians' organization in the country to state publicly its position on what was to become one of the most widely discussed issues of the decade."   The site does not specify what the 1992 position was, but notes that it was revised in 1997 "to respond to the U.S. Supreme Court's decision on PAS."  The 1997 statement was neutral on PAS, but offered guidelines for consideration in case the states decide to legalize PAS.  (Next:  June, 1997)

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).

Dorgan (D-ND) and Ashcroft (R-MO) begin seeking support for proposed legislation to prevent federal funding of PAS.  The legislation was titled "Assisted Suicide Funding Restriction Act of 1997" (S. 304; companion bill to HR 1003). 

Oregon: On February 27, the Ninth Circuit Court of Appeals dismisses the district court's decision, claiming the federal court did not have jurisdiction:

"The plaintiffs in this case are doctors, patients, and residential care facilities challenging the facial validity of the State of Oregon's Death With Dignity Act. Plaintiffs contend the Act violates the First and Fourteenth Amendments to the United States Constitution, as well as several federal statutes. The district court found the Act to violate the Equal Protection Clause and permanently enjoined its enforcement. Because the federal courts do not have jurisdiction to entertain Plaintiffs' claims, we vacate and remand with instructions to dismiss Plaintiffs' complaint."

Hastings Center Report publishes "Is There a Duty to Die?" by John Hardwig.  (Mar-Apr;27(2):34-42.)  Hardwig answers "yes," for the common good.

"Let me be clear. I certainly believe that there is a duty to refuse life-prolonging medical treatment and also a duty to complete advance directives refusing life-prolonging treatment. But a duty to die can go well beyond that. There can be a duty to die before one's illnesses would cause death, even if treated only with palliative measures. In fact, there may be a fairly common responsibility to end one's life in the absence of any terminal illness at all. Finally, there can be a duty to die when one would prefer to live. Granted, many of the conditions that can generate a duty to die also seriously undermine the quality of life. Some prefer not to live under such conditions. But even those who want to live can face a duty to die."

Schiavo: George Felos (a founding member of the National Legal Advisors Committee on Choice in Dying) is brought into the case

"[Michael Schiavo] is aware that the issue of withdrawal or refusal of medical treatment for [Terri Schiavo] is a difficult issue in this case and that the ward's parents will need to be involved.  I am not aware of any other interested persons.  Because of the delicate nature of this case, I advised [Michael] to employ counsel who has special expertise in this area of the law.

It is anticipated that the parents will initially be approached gently and informally by Attorney Felos regarding this issue, that Hospice will be involved, and that counseling will be provided to the guardian and the parents to assist with the decision-making process." [Bushnell letter, 5/6/97]

Soros and RWJF co-sponsor the "National Consensus Conference on Medical Education for Care Near the End of Life," held May 16-17 in Washington, DC.  RWJF granted $41,500 to Harvard Pilgrim Healthcare, Inc, and Susan Block, MD (Director, PDIA Faculty Scholars program); David Barnard, PhD, was co-chair. The conference produced a consensus statement, endorsed by the following people:

RWJF grant for $149,486 (ID#32334) to