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Two Decades to an American Culture of Death

How a handful of progressive foundations and quasi-government agencies
set out to provide equitable distribution of health care,
and in the process, created a duty to die and a culture of death.
And how they hope to secure their legacy . . .

Featuring the collaboration of:
the Hastings Center,  the Robert Wood Johnson Foundation (RWJF),
George Soros's Project on Death in America (PDIA), Institute of Medicine (IOM),
AARP, Choice in Dying, and a number of prestigious universities,
to name only a few.

From 1996 forward, the Robert Wood Johnson Foundation (RWJF) and George Soros's Project on Death in America (PDIA) implemented end-of-life (EOL) programs that fit into a three-point strategy to change American culture.  Bioethicist Daniel Callahan (healthcare rationing proponent), argued that America was a death-denying society, and suggested a three-point plan for cultural change. The strategy for change was published in a 1995 Hastings Center Report. Callahan's three points were later refined in recommendations from the Institute of Medicine. Those three areas of emphasis -- professional education, institutional change, and public engagement -- provided the framework for RWJF funding thereafter. In the timeline below, we have flagged the EOL programs with corresponding icons:


1) Professional
2) Institutional
3) Public
Professional education Institutional change Public engagement

While RWJF provided the lion's share of the funding, Soros's Project on Death in America funded the leadership.  The list of Open Society Institute/Project on Death in America grant recipients reads like a who's who of palliative care. In fact, many of the key project designers were Soros scholars, e.g., Diane Meier, Joanne Lynn, Christine Cassel, Charles von Gunten, Joseph Fins, and Frank Ferris.

Central to this history is Choice in Dying, a right-to-die advocacy organization in New York.   While assisted-suicide activists in Oregon, California, and Colorado were aggressively pushing legislation and bringing suit to legalize PAS and euthanasia, Choice in Dying quietly reorganized as "Partnership for Caring."   Partnership for Caring endorsed a more nuanced form of aid-in-dying than the lethal overdoses prescribed in Oregon.  In 1994, as president of Choice in Dying,  Karen Kaplan called the Oregon PAS legalization a pain control measure [see: "Dying for the Cause" by Rita Marker; Philanthropy; January/February 2001].   By 2001, Partnership claimed neutrality on the issue of PAS and euthanasia; but its president saw tremendous right-to-die potential in the Washington v. Glucksberg and Vacco v. Quill decisions:

"the Supreme Court upheld the right of states to legislate whether to ban or to permit assisted suicide.  The Supreme Court concluded that the distinctions between assisted-suicide and either withholding or withdrawing life-sustaining treatment were 'important,' 'logical,' and 'rational.'  As a result, it is constitutionally permitted for states to allow competent persons to refuse life-sustaining treatments while banning physician assisted suicide."  [emphasis added]
[ M. Metzger JD, K. Kaplan MPH, Sc.D.   Transforming Death in America: A state of the nation report. Washington, DC. 2001.  Prepared for Last Acts.]

Thus, there have been two predominant wings of the right-to-die movement -- one very high-profile, and another less so.  The lower-profile group is the primary focus of this timeline. With the help of multi-million dollar funding, they have made great progress in the past decade.  We've flagged the two groups within the timeline:

  high-profile groups High-profile groups located mostly in the western US;
  The lower-profile group -- Choice in Dying, later known as Partnership for Caring -- evolved from New York's Euthanasia Society of America.  Best known for introducing living wills. Shown at left is their logo circa 1988, when the group was known as "Society for the Right to Die."


Radical right-to-die.

The high-profile western movement includes Hemlock Society, Oregon Right-to-Die, Death With Dignity, and Compassion in Dying (now known as Compassion & Choices).  These have been forthright advocates of PAS by lethal overdose.  They are known for their direct approach to forcing change, such as through litigation.  In 2003 and 2004, some of these groups renamed themselves in an effort to present a softer image to the public.


Living wills, social engineering, and imposed death.

Partnership for Caring took a different course. Advocating "patient's choice," their strategy was to encourage individual choice through living wills, and to change medical and public culture through education programs.   Partnership advanced two principal avenues for hastening or controlling time of death.  When this new palliative care movement lobbied for change, they demanded that legislation provide one or both of these safe harbor exceptions:

  1.  withholding/withdrawing nutrition and hydration
  2.  double-effect of pain medication (allowing terminal sedation).

Partnership for Caring directed the national program office for RWJF's Last Acts, and garnered millions in funding from RWJF, Fan Fox and Leslie R. Samuels Foundation, Nathan Cummings Foundation, Mayday Fund, and PDIA.  Partnership also administeredEuthanasia Society to Partnership for Caring the National Consensus Project, which produced national standards for the clinical practice of palliative care (see 2004).

In 1997, at the time of the second Last Acts Leadership conference, palliative care (symptom treatment) was promoted in the context of patient comfort.  But it was also about economics.  New futility guidelines would be necessary for a sustainable healthcare system (just and equitable distribution of scarce healthcare resources) that end-of-life care architects envisioned.  A number of the RWJF and PDIA scholars originated from Canada or the United Kingdom, where the health care system is different from that of the US.  We hope that these designers recognize the problems in the Canadian and British models, and will not replicate them here in the United States.

In November, 2003, both Robert Wood Johnson Foundation and Soros announced the end of funding for their end-of-life programs.   At roughly the same time, Partnership became "Last Acts Partnership," but by the end of 2004 Karen Kaplan had moved on to Wye River Group on Healthcare (a liberal, New Democrat healthcare think tank), and to the faculty at Mount Sinai School of Medicine.  Nevertheless, many of the end-of-life programs begun in the early 1990s will most likely continue with other funding sources.

The purpose of most RWJF funding over the years has been to provide seed money; creating demonstration projects to be expanded by other funders or the federal government. 

Regardless of whether or not any of the Last Acts/PDIA programs become federalized, the legacy will continue in the mainstreaming of ideas and policies once thought controversial, but which are now commonplace in textbooks, accreditation courses, and popular culture:

  • withholding/withdrawing nutrition and hydration, even when the patient is able to assimilate food and/or fluids (perpetuation of the myth that a death by dehydration is painless)
  • non-reversible sedation, usually through the use of opioids
  • a more casual view of opioids
  • chronic disease is terminal disease
  • redefining "imminent."  A prognosis of "imminent death" can mean that the patient might die in a day or so;  or within a year.

Look for these programs to be carried on by National Hospice and Palliative Care Organization (NHPCO), the American Academy of Hospice and Palliative Medicine (AAHPM), American Board of Hospice and Palliative Medicine (ABHPM), and continued local activism led by state hospice organizations. Funding will continue from NIH and other sources. Soros's PDIA has funded a chair at AAHPM to found a college for palliative medicine. Porter Storey was appointed to head up that project at AAHPM. NHPCO's board and steering committees reads like a who's who of the RWJF/Soros movement. In spite of the fact that the Soros/RWJF-funded doctors [see "the death cadre"] drew resounding criticism from their colleagues regarding the Terri Schiavo case, this clique is still loved and sought out by the old-line news media as representative of correct medical thought.

The following chronology is a rough outline of the fusion and metamorphosis of right-to-die, palliative care, and hospice under the aegis of bioethics and progressive ideology.


Here are a few key articles. For the most part, these are primary sources: written by people who were, and continue to be, instrumental in the culture of death movement. The sources spell out the goals and methods of the movement, and discuss what they consider to be their successes and failures.

Bear in mind that these are written from a right-to-die perspective; so that, for example, "protect the patient's rights" means protect the patient's right to die (right to refuse treatment).

Here is a small sample of sources; we will continue to add to the list as time permits.

Beresford, Larry; Elizabeth Johnson. "Last Acts: Leverage Points; A Report Based on the Second National Last Acts Leadership Conference, October 29-30, 1997." Formerly online at the Last Acts web site, www.lastacts.org. Now archived online.
Report on Ira Byock's keynote address to over 275 leading health care professionals, activists, and bioethicists. In the address, Byock outlines the Last Acts strategy to reverse what they saw as American "culture's deep-seated denial and avoidance of death."

Bronner, Ethan.  "The Foundation's End-of-Life Programs:  Changing the American Way of Death."  To Improve Health and Health Care, Vol. VI;  The Robert Wood Johnson Foundation Anthology.  San Francisco: Jossey-Bass, 2003.

Christopher, Myra.  "Role of Ethics Communities, Ethics Networks, and Ethics Centers.  Improving End-of-Life Care."  Pain Medicine.  Vol. 2, No. 2. 2001; pp. 162-168.
Myra Christopher is CEO of Midwest Bioethics Center (now called Center for Practical Bioethics) in Kansas City, MO (see extensive discussion within the timeline below). She discusses the way in which MBC used state bioethics networks to build the Last Acts end-of-life coalitions, and cites specific examples including Kansas City; Oklahoma; North Carolina; New Jersey; Utah; Nevada; Minnesota.

Dahl, June; Mary Bennett; Matthew Bromley; David Joranson. "Success of the State Pain Initiatives: Moving Pain Management Forward." Cancer Practice. Vol. 10, Suppl. 1; May/June 2002; pp. S9-S13.
June Dahl and the American Alliance of Cancer Pain Initiatives were sponsored by Soros' Open Society Institute ($105,000 in 2001) and RWJF (approx $1.4 million in 2000) to target specific states for narcotics deregulation. The state pain initiatives participated in Bill Moyers' On Our Own Terms grass roots activities. The initiatives also provided yet another network upon which Midwest Bioethics Center could develop RWJF's "Community-State Partnerships" program.

Joranson, David E.  "Improving availability of opioid pain medications: Testing the principle of balance in Latin America." Innovations in End-of-Life Care. Vol. 5, No. 1. 2003:  http://www2.edc.org/lastacts
David Joranson's funding includes $300,000 from Soros' PDIA, and over $2 million from RWJF.

Sabatino, Charles. “De-Balkanizing State Advance Directive Law,” BIFOCAL, newsletter published by the American Bar Association's Commission on Law and Aging. Vol. 25, No. 1. 2003. pp 1, 6-9.
Apparently de-Balkanization is good if the decision is in favor of withdrawal of hydration/nutrition and opioid deregulation.

Weisfeld, Victoria; Steven Schroeder; et al.  "Improving Care at the End of Life:  What Does it Take?"  Health Affairs.  Vol. 19, No. 6; Nov/Dec 2000; pp. 277-283.


1963   Dame Cicely Saunders introduces "specialized care for the dying" to US.
1965   Florence Wald invites Saunders to join Yale as visiting faculty
1967   The term "hospice" is introduced in England (St. Christopher's hospice)

PfC historyThe first living will is written by the Euthanasia Society of America, and attorney Luis Kutner (who later founded Amnesty International).   The Euthanasia Education Council is created the same year.

[Dates for Euthanasia Society of America, and its descendent organizations, are taken from the Choice in Dying web site, now archived.]

1968   An ad hoc committee of Harvard faculty defines "brain death."
1969   Kubler-Ross, New Age spiritualist, produces book: On Death and Dying
1969   Hastings Center is founded in New York by Daniel Callahan and psychiatrist Willard Gaylin, MD. (For a concise history of Hastings and bioethics, see What is Bioethics by bioethicist Dianne Irving, Ph.D.)
1972   Kubler-Ross testifies to Senate on death with dignity
1972   PVS is defined
1974   Balfour Mount (Canada) substitutes the term "palliative care" for the term "hospice."
1976   May: Karen Ann Quinlan case decided; she was removed from respirator. (She died of pneumonia in 1985.)
1980   Overtly pro-PASHemlock Society is founded in California by Derek Humphry
1983 Mar

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."

1984 Apr

Society for the Right to Die 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)

1984-85   Midwest Bioethics Center founded by  bioethicist Karen Ritchie, M.D. (former Chief of Psychiatry at U. Texas-MD Anderson; bioethics degree from Kennedy Institute of Ethics at Georgetown); Hans W. Uffelman, Ph.D.; and Mary Beth Blake, JD.
1984 Sep National Conference of Commissioners on Uniform State Laws drafts a ''Right to Decline Life-Sustaining Procedures Act."  The New York Times publishes an AP wire with the headline "The 'Living Will' Gains Acceptance" -- a puff piece on Luis Kutner and the Society for the Right to Die.

RWJF calls meeting to discuss dying in America:
"Fueled by a series of personal experiences that affected the leadership of the RWJF, a concern arose . . . that elderly, fatally ill persons were likely to be vigorously treated . . . at great financial cost and suffering, even if their families objected." -- Joanne Lynn, MD; Unexpected Returns: Insights from SUPPORT

The meeting led to recommendations from two researchers:

  1. Joanne Lynn, MD, a Kornfeld Scholar at Dartmouth University (later moved to George Washington Univ.). Kornfeld Foundation supports research for "the right of the individual to choose the time and manner of his or her death, without undue interference by doctors, hospitals, courts, churches, families or society." Dr. Lynn has won at least $6 million in funding from RWJF, approximately $127,000 from Fan Fox & Leslie R. Samuels Foundation for work at RAND, and a grant from Soros/PDIA for textbook reform.

Dr. Lynn is a proponent of withdrawal of nutrition and hydration. See, for example, the following from Handbook for Mortals, co-authored by Dr. Lynn:

    How do people die who choose not to be fed artificially? What evidence we have indicates that they do not die more quickly, and that they do not feel thirsty or hungry. Their dying without tube feeding, though, tends to have less struggling with restraints .
    . . . Persons with dementia die from an array of different complications, but mostly these are somewhat treatable. Yet, the treatments are frightening, even if only because they may require that the person leave familiar surroundings. And the life saved, at least at the end, seems so limited that it is often not clear exactly what should be included in "good care."
    . . . The courts have ruled, over and over, that using artificial nutrition or hydration is a treatment decision just like chemotherapy or surgery, and that families and doctors can choose to use or to forgo this kind of treatment.

  1. William Knaus, MD at George Washington University. After a year of internship in the US, he was sent by US Information Agency to work in the Soviet Union for a number of years. His book, Inside Russian Medicine, was published in 1981 by Everest House. He wrote (p.14): "There is no single right answer to the challenge of providing medical care. The Soviet Union has chosen a totally government-controlled system, an approach fundamentally unlike our own mixture of private and public services." Dr. Knaus went on to found a new department within School of Medicine at The University of Virginia: the Department of Health Evaluation Sciences. Dr. Knaus also developed a "prognostic scoring system for critically ill hospitalized patients: APACHE (Acute Physiology, Age, Chronic Health Evaluation).

[Next:  SUPPORT research is launched]


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 ConferenceMichael 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).

1987   In 1987, a conference was held in preparation for the Appleton Consensus conference.  The actual Consensus conference would be held in 1988.  Two concerns came from this 1987 conference:  "1) concerns regarding decisions to forgo medical treatment, including life-prolonging treatment, precipitated by autonomous requests by patients or their surrogates, and 2) concerns regarding decisions to forgo medical treatment as a result of pressures due to scarcity."  (Next:  May, 1988)
1987   Great Britain recognizes palliative care as a medical specialty, and describes palliative medicine as the "study and management of patients with active, aggressive, far-advanced disease for which prognosis is limited and the focus of care is quality of life."
1987   Decisions Near the End of Life -- medical education program founded by Bruce Jennings (Hastings Center) and Mildred Solomon (Center for Applied Ethics and Professional Practice at the Education Development Center). Funded initially by Kellogg Foundation. Soros's Open Society Institute sponsored projects in 1996-97.
1987   Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying
a report by the Hastings Center.  Briarcliff Manor, NY: The Center, copyright 1987.
xii, 159 p.; 28 cm.  Bruce Jennings; Bernard Lo.
1987   Donum vitae (The Gift of Life) -- Vatican provides instruction on respect for human life.
1988 May

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).


1988 Jun

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)


RWJF launches $28 million study of dying in America ("SUPPORT"); the first step in what would become a 15-year campaign to change America's "Culture of Denial."

RWJF funded "Program on the Care of Critically Ill Hospitalized Adults" at George Washington University. That program conducted the "Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments," known to this day as the SUPPORT study. Joanne Lynn and William Knaus designed the study.

National Coordinating Center: George Washington University
Research sites for study of dying patients:

  1. Beth Israel Hospital in Boston;
  2. Cleveland MetroHealth Medical Center;
  3. Duke University Medical Center (Durham, NC);
  4. Marshfield Medical Research Foundation (Marshfield, WI);
  5. UCLA School of Medicine.
Researchers included Joan Teno, MD; Stuart Youngner, MD; Donald J. Murphy, MD.

[Next:  Hastings Center introduces SUPPORT.]
1989 Mar

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.]

1990 Oct

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.]

1990 Dec

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)

1991   Society for the Right to Die and Concern for Dying merge to form
Choice in Dying
1991 Mar New England Journal of Medicine publishes an article by Timothy Quill (University of Rochester) in which he describes in detail how he helped his patient— "Diane"— kill herself.
"Death and dignity. A case of individualized decision making." New England Journal of Medicine, March 7, 1991; 324(10): pp. 691-4.

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).

1992   Ira Byock brings Chalice of Repose Project to Missoula, Montana.  Chalice of Repose is "a school of music-thanatology. . . . Its faculty and students keep vigil at the bedsides of the dying with singing and playing the harp. "
1993 Apr PAS proponentCompassion in Dying is founded in Washington.  Barbara Coombs Lee writes: "At the peak of the AIDS epidemic, eleven activists establish Compassion in Dying in Seattle, Washington and publicly declare their intention to counsel mentally competent, terminally ill patients on aid in dying."  ["Aid in dying" becomes a euphemism for physician-assisted suicide.]
1993 Jul RWJF announces an initial investment of $23 million in an interfaith caregiver programFaith in Action (FIA).  FIA replicates RWJF's 1983 "Interfaith Volunteer Caregivers Program."   The program provided seed money ($25,000) to interfaith "coalitions" to aid caregivers.    Faith in Action was not officially one of RWJF's EOL projects; but the coalitions serve people with chronic illnesses, AIDS, and dementia, so the program dovetails with the EOL program.  Many of the Faith in Action grants went to coordinators at hospices.  Also note the tie-in with EPEC2:  Della Reese would present a Faith in Action keynote address at IIPCA's "Last Miles of the Way Home" (see "Last Miles," February, 2004).

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).

1993 Dec First step towards IOM's futility guidelines: 
Institute of Medicine (IOM) "Workshop on Dying, Decisionmaking, and Appropriate Care" in DC.

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).

1994   Supportive Care of the Dying, a consortium of Catholic health care providers, is founded in Oregon in response to legalization of PAS.
1994   PAS proponentsDeath With Dignity Education Center is founded in California.

Partnership for CaringChoice 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

  • Yale Univ. School of Medicine (Nancy Angoff, MD)
  • Washington University School of Medicine, St. Louis, MO (Ellen Binder, MD)
  • Univ. of California Medical School (Molly Cooke, MD)
  • Hahnemann University, Philadelphia (Janet Fleetwood, PhD)
  • Dartmouth Medical School (Sarah Goodlin, MD)
  • University of Miami, Forum for Bioethics & Philosophy (Kenneth Goodman, PhD)
  • University of Washington, Seattle, WA (Thomas McCormick, D.Min)
  • Loyola University School of Medicine (Myles Sheehan, MD)
  • East Tennessee State University (Tom Townsend, MD)
  • State University of New York, Stony Brook (Peter Williams, PhD, JD)
  • Univ. of Texas Medical Branch at Galveston (William Winslade, PhD, JD,; also with Choice in Dying)
  • Choice in Dying:
    - William A. Nelson, Ph.D. (also for Veterans Health Administration National Center for Ethics)
    - Karen Orloff Kaplan
    - Mary L. Meyer
1994 Oct Arthur Caplan convenes a "Bioethics Mega-meeting" in Pittsburgh, PA, 10/6-10/9/1994. This is the first concurrent meeting of the American Association of Bioethics, American Society of Law, Medicine and Ethics, Society for Bioethics Consultation and the Society for Health and Human Values. Theodore Marmor delivered a keynote address on healthcare reform; lamented that the news media did not properly explain the plan and process to the public.
1994 Nov Overt proponents of PASOregon Death With Dignity Act (Measure 16) is approved by voters.  Oregon Right to Life provides a good summary of the subsequent events.
1994 Nov Reagan announces he has Alzheimer's; goes into seclusion. (He lives almost a decade.)
1994 Nov

George Soros delivers a speech at Columbia Presbyterian Medical Center (NY), explaining how and why he created Project on Death in America. He says that his mother had been a member of the Hemlock Society, and he approves of the Oregon law just passed; but he does not speak for PDIA, which is taking a neutral position.

The next month, the foundation issues a formal press release announcing  Project on Death in America. To start, Soros invests $15 million over 3 years.

1995   Robert Wendland's wife refuses to allow his feeding tube to be reinserted.  For information on the ensuing case, see
1995   Overt proponents of PASOregon Death with Dignity Legal Defense and Education Center is founded for the purpose of defending Oregon's Ballot Measure 16 to legalize PAS.
1995   American Alliance of Cancer Pain Initiatives is launched (from Wisconsin Cancer Pain Initiative).

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:

"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."
1995 Mar Evangelium vitae (March 25)
1995 Apr

April: Ira Byock, in American Journal of Hospice and Palliative Care:

"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:

Diane Meier,
Judith C. Ahronheim,
Jane Morris,
Sean Morrison OSI Scholars at Mt. Sinai Medical Center in NY;
Andrew Billings ( OSI Scholar, MGH/Harvard);
Wm. Breitbart (OSI Scholar, Memorial Sloan-Kettering /Cornell);

Nicholas Christakis (U.Chicago);
Stuart Farber (U. Wash.);
Carlos Gomez (U.Va.);
Sarah Goodlin (White River Junction, VT and Dartmouth);
Steven Miles (U.Minn; Wanglie case);

Thomas Smith (Va. Commonwealth);
James Tulsky (Duke);
Charles von Gunten (Northwestern);
David Weissman (Med. Coll. of Wisconsin).
1995 Aug Oregon: District court judge declares Death With Dignity Act (Measure 16) unconstitutional.  The decision would be appealed to the Ninth District Court of Appeals (see February, 1997).
1995 Nov

Hastings Center Report (special supplement, paid for by RWJF; Nov.–Dec. 1995.) Dying Well in the Hospital: the lessons of SUPPORT.

Daniel Callahan worries that [bellicose] America is waging a "war against death." We must accept death. Outlines strategy for campaign against death-denying society:


  1. Communication;
  2. Institutional change;
  3. Public engagement.

Callahan's three-pronged strategy will form the basis for the first RWJF Last Acts conference in 1996.

[Next:  SUPPORT is published; and Last Acts is launched.]

1995 Nov

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

1995 Dec

SUPPORT published in Journal of the American Medical Association (JAMA)
"A controlled trial to improve care for seriously ill hospitalized patients: the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments (SUPPORT)." JAMA. 1995; 274:1591-1598.


Professional educationEPEC 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.

1996 Mar Institutional ChangeMissoula Demonstration Project (which later became Life's End Institute) is founded in Missoula, Montana, by Ira Byock and Barbara Spring.  Initial funding came from Nathan Cummings Foundation and Project on Death in America.  In addition, Mayday provided $150,000 (1996-1999) for Missoula's "Pain as the Fifth Vital Sign" project, conducted by Linda Torma, MSN.  In 1999, executive director Barbara Spring would be replaced by bioethicist Mark Hanson of the Hastings Center.  Hanson would also become interim director of the Practical Ethics Center at Univ. of Montana (headquarters for Promoting Excellence -- see below ).
1996 Mar

Last Acts calls its First National Leadership Conference in Arlington, Virginia, on March 12. The one-day conference was designed around Daniel Callahan's three-point strategy to change America's culture of denial:

  1. Communication (Later, following IOM's recommendations, this changed to "professional education" for grantmaking purposes. The SUPPORT study had been a failure in terms of physician/patient communications);
  2. Institutional change;
  3. Public engagement.

We have provided a list of participants in the first Last Acts conference on a separate page.

The conference featured the following speakers and facilitators:  Thomas Delbanco, M.D. (Beth Israel Hospital; Picker Institute); Kathleen Foley, M.D. (Memorial Sloan-Kettering; Soros/PDIA ); William Knaus, M.D. (Univ. of Virginia School of Medicine); Jonathan Lord (American Hospital Association); Joanne Lynn, M.D.  (Center to Improve Care of the Dying); Laurence O'Connell, Ph.D.  (Park Ridge Center for the Study of Health, Faith); Steven Schroeder, M.D  (RWJF President); Paul Armstrong, J.D., L.L.M. Timins & Associates (Armstrong was lawyer for the family of Karen Ann Quinlan); Elizabeth Clark, Ph.D., ACSW  (Albany Medical Center / National Coalition for  Cancer Survivorship); Michelle Ervin, M.D.  (Howard University Hospital; Soros/PDIA Faculty  Scholar 1998); Joan Harrold, M.D., MPH (Center to Improve Care of the Dying); Barbara Koenig, Ph.D. (Stanford Center for Biomedical Ethics; Soros/PDIA ); Mildred Solomon, Ed.D. (Education Development Center, Newton, MA).

This meeting generated a list of objectives and tactics -- or "Challenges" and "Opportunities":

  1. Create opportunities for talking about death
  2. Change the language about dying ("Establish working relationships with educators in secondary school systems, particularly those who teach family life or health, aimed at making the vocabulary of death and dying more natural." Example: Soros-funded "Grief at School Program")
  3. Promote Advance Care planning
  4. Improve communications skills of health care professionals
  5. Strengthen health care professional education related to death and dying.
  6. Palliative Care -- make it an integral part of patient care. (normalize it; move it upstream)
  7. Quantify. Develop measurement measures. (Outcome-based death)
1996 Apr IOM's Committee on Care at the End of Life - Public Hearing #1  on April 29 at National Academy of Sciences, Washington, DC.  (IOM's second step toward futility guidelines, published in  "Approaching Death").  Led by Christine Cassel; panelists included Joseph Fins (American Geriatrics Society); Kim Calder (American Alliance of Cancer Pain Initiatives); Linda Blank (ABIM); Thomas Reardon (AMA); Ira Byock (Academy of Hospice Physicians); Colleen Scanlon (American Nurses Assn.; Catholic Health Initiatives); John Mahoney (National Hospice Organization); Richard Fife and Melanie Merriman (Vitas); Gretchen Brown (Hospice of the Bluegrass); Charles Sabatino (American Bar Assn.)
1996 May NY forum on SUPPORT -- Hastings Center, Callahan
1996 May American Academy of Hospice Physicians (a spin-off of the International Hospice Institute) becomes American Academy of Hospice & Palliative Medicine (AAHPM) in 1996.  AAHPM helps launch the American Board of Hospice and Palliative Medicine (ABHPM), which incorporates in May, 1996.  ABHPM becomes the palliative care certification agency.  It administers its first certifying exam later that year.
1996 Jun

Public engagementProject 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.

1996 Jul

Institutional changeRWJF 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 ChallengeTwelve 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.]

1996 Aug Last Acts moves forward. RWJF president Dr. Steven Schroeder sends "Dear Colleague" letter to approximately 140 organizations to recruit Task Force members for Last Acts. Task forces: Family; Palliative Care; Service Providers; Provider Education; Financing; Workplace. Resource committees: Communications, Diversity, Spirituality, Standards & Guidelines, and Evaluation & Outcomes.
1996 Aug

IOM's Conference on Measuring Care at the End of Life, held August 27 at Wood's Hole, developed guidelines. Produced a draft "toolkit" to measure quality of care, but the toolkit is a compendium of surveys to measure the patient's status, from overall "quality of life," to "spirituality." Ira Byock's "Missoula-Vitas Quality of Life Index" was one of the quality of life instruments in the toolbox.

Teno directed; Lynn was a presenter. Byock attended. RWJF & Cummings funded $100,000.

1996 Sep

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:

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.

1996 Oct

Institutional changeCongress 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.

1996 Nov

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).

1997   Professional EducationLast Acts' Innovations in End-of-Life Care: An International Journal and On-line Forum for Leaders in End-of-Life Care. This is an online journal published by the Center for Applied Ethics and Professional Practice (CAEPP) at the Education Development Center (EDC) in Newton, Massachusetts (Mildred Solomon).
1997   Institutional changePromoting Excellence in End-of-Life Care (RWJF): $12 million+ from RWJF to Ira Byock and his institute based at the Univ. of Montana - Missoula.
1997 Jan

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). 

1997 Feb

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."

1997 Mar

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."

1997 Apr Public engagementRWJF funds a television broadcast: Before I Die, hosted by Tim Russert.  The program airs on PBS on April 22. This begins the media campaign that will build grass roots organizations, purportedly as a reaction to the SUPPORT study. Funding: $639,000 from RWJF to Educational Broadcasting Corp; $181,000 to Barksdale Ballard for public relations.
1997 Apr The Assisted Suicide Funding Restriction Act (H.R. 1003) approved by the House on 4/10, and passed the Senate on 4/16.  Signed by President Clinton on 4/30.
1997 May

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]

1997 May Institutional changeThe Pain & Policy Studies Group at the Univ. of Wisconsin-Madison receives $693,400 from RWJF (#31461) to work "with state medical, nursing, and pharmacy boards to help them make more informed decisions with regard to physician practice in the treatment of pain, and collected data on pain-related policy and practice." This is the project that resulted in North Carolina's "Joint Statement on Pain Management in End-of-Life Care."
1997 May

Professional educationSoros 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:

Judith Ahronheim, M.D  (Soros/PDIA Faculty Scholar 1995);
Robert Arnold, M.D. (a founding member of Society for Health & Human Values);
J. Andrew Billings, M.D. (Soros/PDIA Faculty Scholar 1995);
Harvey Max Chochinov (Canada; Soros/PDIA  1996)
Stuart Farber, M.D. (Soros/PDIA Faculty Scholars 1995);
Frank Ferris, M.D. (Soros/PDIA Faculty Scholar);
Marilyn Field, Ph.D. (IOM);
Joseph Fins, M.D. (Soros/PDIA Faculty Scholar 1997);
Kathleen Foley, M.D. (Director, Soros/PDIA)
Ellen Fox, M.D.
Jack Gordon (Last Acts Institution Innovation committee; Hospice Foundation of America is Soros grantee)
Barbara Koenig, Ph.D. (Soros/PDIA 1999);
Karen Long;
Edward Lowenstein, M.D.;
Diane Meier, M.D. (Soros/PDIA Faculty Scholar 1995);
Galen Miller (National Hospice Organization);
Patricia Prem, M.S.W. (Founder, Project on Death in America);
Christina Puchalski, M.D. (Convener of Last Acts Spirituality Task Force);
Timothy Quill, M.D.
Fenella Rouse, J.D. (1998 Kornfeld executive director);
Colleen Scanlon, R.N., J.D., MS;
Peter Selwyn, M.D., M.P.H. (Soros/PDIA Faculty Scholar 1997);
Mildred Solomon, Ed.D.;
R. Knight Steel, M.D.;
Wayne Ury, M.D.;
Charles von Gunten, M.D., PhD
(Soros/PDIA 1995);
David Weissman, M.D.; (Soros/PDIA 1995);
Stuart Youngner, M.D.
1997 Jun

Publication of IOM's book, "Approaching Death." The report included futility guidelines, and a recommended strategy for changing the culture. RWJF adopted the strategy in their end-of-life project funding strategy:

  1. Professional Education;
  2. Institutional change;
  3. Public engagement.
1997 Jun June 25, the board of the American Academy of Hospice and Palliative Medicine (AAHPM) adopts a position statement on assisted-suicide, taking a neutral position, but offering rough guidelines in case PAS is legalized.
US Supreme Court cases:

On June 26, the US Supreme Court reversed two Circuit Court decisions.  The Supreme Court decisions helped map out a strategy for the Last Acts' new and improved definition of assisted suicide.  Four years after the decisions, Last Acts' Karen Orloff Kaplan and Margaret Metzger wrote:

"In these cases, the Supreme Court upheld the right of states to legislate whether to ban or to permit assisted suicide.  The Supreme Court concluded that the distinctions between assisted-suicide and either withholding or withdrawing life-sustaining treatment were "important," "logical," and "rational."  As a result, it is constitutionally permitted for states to allow competent persons to refuse life-sustaining treatments while banning physician-assisted suicide.  Amidst all of the publicity about the activities of Dr. Jack Kevorkian, Oregon became the only state to legally permit, in limited circumstances, physician-assisted suicide."*

Karen Kaplan's right-to-die group, Choice in Dying, posted a summary of the decisions.

Hemlock Society founder Derek Humphry notes that the Supreme Court "also validated the concept of 'double effect,' openly acknowledging that death hastened by increased palliative measures does not constitute prohibited conduct so long as the intent is relief of pain and suffering."

Professor Russell Hittinger's incisive article in the March, 1997, issue of First Things parses the Clinton administration's amicus curiae briefs, and anticipates a decision that would nominally oppose assisted suicide, while at the same time open the door to assisted suicide on a state-by-state basis.

*Metzger JD, M., Kaplan MPH, Sc.D., Karen (2001). Transforming death in America: A state of the nation report. Washington, DC. Prepared for Last Acts.

1997 Aug Institutional ChangeRWJF announces a three-year, $1.6 million grant to the University of Wisconsin - Madison Medical School.  "Under this project, the Wisconsin Cancer Pain Initiative--a national leader in encouraging better methods of pain control and in teaching health care professionals how to use them--will work with the [Joint Commission on Accreditation of Healthcare Organization (JCAHO)] to develop new pain control standards."  [full text of press release ]
1997 Sep National Institutes of Health responds to SUPPORT with a Research Workshop on September 2 titled "Symptoms in Terminal Illness."
1997 Sep

Institutional changeRWJF grant for $149,486 (ID#32334) to National Conference of State Legislators for a study of state legislation, that would lead to publication of a book for legislators, to guide them in crafting end-of-life legislation.

"Working with the Center to Improve Care of the Dying at George Washington University, the National Conference of State Legislatures (NCSL) produced and distributed 10,500 copies of the guidebook State Initiatives in End-of-Life Care: Policy Guide for State Legislatures. The guidebook describes state commissions examining End-of-Life issues, explores pain management, and discusses financing of services for the terminally ill. NCSL also held seminars featuring legislators and End-of-Life experts at two of its national conferences. In addition, the organization produced and distributed 2,500 copies of two audiotapes — "State Initiatives in End-of-Life Care" — based on these seminars. Educational materials were provided at no cost to state legislators and their staffs"

First conference, State Initiatives on End-of-Life Care, in December 1997 Panelists: George Eighmey (Ex. Director of Compassion in Dying, Oregon); Joan Gibson, M.D.; Peter Ginaitt; David Joranson, M.S.S.W.; Susan Lynch; Joanne Lynn, M.D., MA, MS.

Concurrent RWJF funding to Richard Merritt at NCSL, and to GWU, for state-level health policy:

1995 ID #20033 George Washington University $253,126
1996 ID #30342 National Conference of State Legislatures $303,120
1997 ID #31569 National Conference of State Legislatures $702,120
1999 ID #35554 National Conference of State Legislatures $229,684
1999 ID #37549 National Conference of State Legislatures $233,436

The manual to assist state legislators would be published in June, 1998 (see below)

1997 Oct

American Health Decisions (AHD) (Atlanta, GA, and Appleton, WI; with "grass roots" groups in 13 states) produces The Quest to Die With Dignity (online executive summary).  AHD received a grant of $254,000 from RWJF to conduct the study. Based on 385 people in 32 focus groups, and 29 additional telephone conversations, AHD determined that Americans "fear dying while hooked up to machines," and spells out how "ethnic background [more than religion] accounts for the greatest differences" in "opinions, values, and concerns."

AHD had planned to release the report in July, "at an opportune time to benefit two other initiatives:"  EPEC, and "a national education program that will parallel the AMA's program" [Last Acts].  The report was released in early October, in time to be featured in the Oct. 29 Last Acts conference (see below).

1997 Oct

October 29-30:  Last Acts, Second National Leadership Conference. Over 275 attendees. Welcome via videotape from Honorary Chair Rosalynn Carter.  Ira Byock gave keynote address on "finding the levers to move a culture of denial" in America."

Byock identified:

Levers of Change:
1)  Standards
2)  Measurement based on standards.
3)  Accreditation and Certification
4)  Policy and Public
Agents of Change:
1)  Medical Establishment
2)  Boomer Consumers
3)  Payers
4)  Funders of Research and Demonstrations
5)  Media
1997 Oct Oregon's Death With Dignity Act (ORS 127.800-897) takes effect October 6 when the U.S. Supreme Court dismisses a writ of certiorari
1997 Dec December 9:  Alliance for Health Reform, Choice in Dying, and Hospice Organization of America co-sponsor congressional briefing on the Advance Planning and Compassionate Care Act of 1997.  The bill was sponsored by Sen. Jay Rockefeller and Sen. Susan Collins, and was "designed to strengthen the Patient Self-Determination Act."

Institutional change Precepts of Palliative Care (Last Acts Palliative Care Committee)
Last Acts says the document  "Describes the essential components of palliative care. Prepared by the Last Acts Palliative Care Task Force, headed by Colleen Scanlon (Catholic Health Initiatives) and Karen Lomax (National Center for Clinical Ethics, US Department of Veterans Affairs), the precepts have been accepted by more than 25 national and 35 state and local organizations. They provide a basis for discussion of what constitutes good end-of-life care in any clinical setting. They are being used by hospitals, hospices, and professional training programs."

The Palliative Care Task Force included:

  • Colleen Scanlon, R.N., J.D., MS--Catholic Health Initiatives (Denver, CO)--Convener
  • J. Andrew Billings, M.D.-- Massachusetts General Hospital; Soros/PDIA Faculty Scholar 1995;
  • Ira Byock, M.D.-- Missoula Demonstration Project;
  • Margaret Campbell, R.N., M.S.N.-- American Association of Critical Care Nurses;
  • Charles Cleeland, Ph.D.-- American Pain Society (M.D. Anderson Cancer Center);
  • Marilyn Field, Ph.D.--Institute of Medicine;
  • Russell Portenoy, M.D.-- Beth Israel Medical Center, NYC;
  • Fenella Rouse, J.D.--Mayday Fund;
  • Bonnie Ryan, R.N.-- Community Based Services, Dept. of Veteran Affairs;
  • Marguerite Stevens, Ph.D.--Dartmouth-Hitchcock Medical Center;
  • H. James Towey --Florida Commission on Aging with Dignity;
  • Connie Zuckerman, J.D.--United Hospital Fund; Hospital Palliative Care.
1998   Choice in Dying launches coordinating center for grant money aimed at "Program to Improve the Selection and Performance of Health Care Agents."  Grant for $115,000 from Samuels Foundation establishes the center.  Samuels provided an additional $290,000 in 2000.  Partnership for Caring announced the appointment of administrator for the center in their Fall, 2000, newsletter.

First steps to Partnership for Caring: An early 1998 “historic meeting of leaders in the end-of-life field” is impetus for updating the organization, from Choice in Dying to "Partnership for Caring." Karen Kaplan and Ira Byock wrote in the Winter, 1998, Choice in Dying newsletter that Partnership for Caring will be a grass-roots, consumer-driven, activist organization that will "put significant pressure on federal and state governments." First on board was AAHPM. The authors continue (emphasis added):

“Response to the formation of Partnership for Caring has been very enthusiastic. First to join were Choice In Dying and the American Academy of Hospice and Palliative Medicine [AAHPM]. The Boards of Directors of both Choice In Dying and the Academy voted unanimously to join Partnership for Caring as collaborating organizations. Choice In Dying will offer its members complimentary one-year memberships in Partnership for Caring. Other organizations such as the Older Women's League, National Academy of Elder Law Attorneys, and the Commission on Legal Problems of the Elderly, have also agreed to participate in Partnership for Caring.”

1998 Jan

Professional education$216,600 from RWJF to Univ. of California-San Francisco, for medical textbook revision study. Conducted by Last Acts Provider Education Task Force.
Co-Conveners of the task force: Stephen McPhee, Anne Rhome. Textbook study headed by J. Andrew Billings* and Steven Pantilat.**

Other task force members included: Robert Arnold, Susan Blacker, Susan Block*, Grace Christ*, Deborah Danoff, Betty Ferrell*, Ellen Fox, James Hallenbeck, Thomas Prendergast*, Michael Rabow**, Kelley Skeff, Charles von Gunten*, David Weissman.*

*1995-97 Soros/Project on Death in America grant recipients.
** Soros/PDIA grant recipients after 1998.
1998 Mar Under the guidance of the Center for Ethics in Health Care at Oregon Health & Science University, the Task Force to Improve the Care of Terminally Ill Oregonians produced Oregon Death With Dignity Act: A Guidebook for Health Care Providers. In the guidebook, PAS is comfort care.    Principals included:  Patrick Dunn, M.D., Task Force Chair; Bonnie Reagan, M.D., R.N., Editor; Susan Tolle, M.D., Reviewer and Major Contributor; Elizabeth Mitchell, M.S.W., L.C.S.W., Project Administrator; Ann Jackson, MBA (Oregon Hospice Assn); Linda Ganzini, MD (Soros/PDIA 1998).   (Funded by Greenwall Foundation)
1998 Apr Pain control:  First step toward Bergman v. Chin:  Beverly Bergman, with the assistance of Compassion in Dying, files a complaint at the Medical Board of California against Dr. Wing Chin.  Ms. Bergman charged that Dr. Chin had under-prescribed pain medication for her terminally ill father.  In June, 2001, an Alameda County jury awarded Bergman's family $1.5 in damages.  The final judgment and settlement came a year later, in June, 2002 (see below).  Compassion in Dying's legal assistance in this case was financed in part by a $60,000 contribution from the Mayday Fund.
1998 Apr Christine Cassel, Diane Meier, Sean Morrison, Timothy Quill produce a "Survey of Physician Assisted Suicide and Euthanasia in the United States" (NEJM, 4/23/98). The next day, the New York Times publishes Diane Meier's "Change of Heart" on assisted suicide.
1998 Jun

Institutional changeCommunity-State Partnerships to Improve End of Life (C-SP). [Note: This item was originally listed on the timeline in "January, 1999," because that was when funding was announced and state partnerships began forming. We've moved the item to 1998 to reflect the earlier planning.]

Community-State Partnerships was an $11.5 million project directed by the Midwest Bioethics Center. Planning began in 1998; the first grants would not be awarded until January, 1999.

Designed to bring about change at the state and local levels, C-SP used Oregon Health Decisions (OHD) as a model. C-SP devoted the first few policy briefs — particularly June and October, 1998 — to discussion of Michael Garland, Ralph Crawshaw, and the OHD experiment. Successes included an increase in the number of DNRs signed, and healthcare rationing. The June issue reported that OHD assesses community values, then “tries to stimulate local democracy by seeking out local leaders and tapping into existing networks with ready-made constituencies like Oregon’s Hospice Association or the local Rotary Club. 'Anywhere where there are enclaves with a feeling of community,' says Crawshaw.”

OHD provided the roadmap in 1998, but RWJF also credited James Towey's Aging with Dignity. An RWJF grant report notes that Towey "helped shape a new [Robert Wood Johnson] Foundation national program, Community-State Partnerships to Improve End-of-Life Care, which supports organizations working to stimulate community dialogue and improve the quality of End-of-Life care."

Myra Christopher, president of Midwest Bioethics Center, would also credit bioethics centers and networks of hospital ethics committees for development of the state-level coalitions. This was the focus of her article for Pain Medicine, titled "Role of Ethics Communities, Ethics Networks, and Ethics Centers." A prime example of the way in which bioethics groups created a network of influence at the state level can be seen in the case study of the Florida Partnership [see "The Florida Experiment"].

In January, 1999, RWJF announced the first round of C-SP grants. By 2001, C-SP would form End-of-Life Partnerships and coalitions in 21 states:  Alabama, California, Connecticut, DC, Florida, Hawaii, Iowa, Kansas, Kentucky, Maine, Michigan, Minnesota, Nevada, New Hampshire, New Jersey, North Carolina, North Dakota, Oklahoma, Rhode Island, Utah, West Virginia. 

[larger map]
Community-State Partnerships

Susan Tolle, MD, director of  Oregon Health & Science University's Center for Ethics in Health Care, was chair of  C-SP's National Advisory Committee.  Tolle is quoted in the first policy brief:

“Our use of data with the news media often precedes efforts to bring about change in other settings. . . .  If data have not been presented effectively to a wider audience, we are unlikely to be of tremendous influence to legislative bodies. And don't forget that physicians read newspapers. There is no doubt that The Oregonian has made a huge difference.  You can help change the culture of medicine through the popular press. Now the question is, how can we make the climate receptive to the next wave of changes?”   [Issue 1; June 1998 (PDF)]

One of CSP's first projects was coordinating groups for Bill Moyers' PBS special, On Our Own Terms. For example, Midwest Bioethics Center's president Myra Christopher traveled to Florida in October, 1999, to coordinate activists from across the country for the program [see 2000].  The Moyers project would later blossom into "Rallying Points" led by Karen Kaplan of Partnership for Caring [see January, 2001].

Community-State Partnerships coordinated their work with the University of Wisconsin-Madison's Pain & Policies Study Group (PPSG)  (a World Health Organization collaborating agency) program to reform regulations of controlled substances at the state level across the US.  PPSG targeted 16 states for reform, all of which had C-SP coalitions  (CA, CT, HI, IA, KS, KY, ME, NV, NC, NY, ND, OK, RI, TX, UT, and WV.)


[larger map]

The C-SP program ended in 2003. C-SP policy brief 19 (June, 2003) provides a state-by-state list  of goals and coalition accomplishments.

In May, 2004, Midwest Bioethics Center announced they had changed their name to Center for Practical Bioethics. The policy briefs continue at the new site.

[Policy Brief #22 contains the usual misinformation about the Terri Schiavo case. Brief #24 discusses protecting the right-to-die for minorities and disabled. Hugh Gallagher is quoted, but not identified as a Compassion in Dying board member who argued in favor of PAS. Gallagher's organization, "Autonomy," was founded with the help of a grant to Compassion in Dying from the Gerbode Foundation.]

[Next: see On Our Own Terms (Sep. 2000), then Rallying Points (Feb. 2002)]

1998 Jun Institutional changeManual published: "State Initiatives in End-of-Life Care Policy Guide for State Legislators" (funded by RWJF) 
1998 Oct

October 1:  Hugh Finn's feeding tube is removed.
(Case goes to Virginia Supreme Court)

Hugh Finn was a high-profile figure in Louisville, Kentucky, where he had been news anchor.   In 1995 he was left brain-damaged after an auto accident.  He was moved to Virginia for rehabilitation.  In June, 1998, his wife Michele requested that his feeding tube be removed.  On August 31 Circuit Court Judge Frank A. Hoss ordered the removal.  Finn's parents and siblings, and his nurse, contended Finn was not in a PVS, and had spoken to them repeatedly. The family sought help from Robert Marshall, a delegate in Virginia's House.   Judge Hoss ordered that the feeding tube be removed on October 1.  Virginia governor James Gilmore appealed to the Virginia Supreme Court, but his appeal was rejected almost immediately.  Hugh Finn died on October 8, 1998. 

The Virginia Supreme Court revisited the case in 2000, when Michele Finn sued the state for reimbursement of legal expenses.  This time the court decided in favor of the governor, and ruled that the governor's 1998 intervention had been warranted.

Robert Marshall's web site is an excellent resource for facts in the case.

1998 Oct

October 2:  John Paul II addresses the bishops of California, Nevada, and Hawaii on their "ad Limina" visit.  He states:

"As ecumenical witness in defense of life develops, a great teaching effort is needed to clarify the substantive moral difference between discontinuing medical procedures that may be burdensome, dangerous or disproportionate to the expected outcome - what the Catechism of the Catholic Church calls “the refusal of 'over-zealous' treatment” (No. 2278; cf. Evangelium Vitae, 65) - and taking away the ordinary means of preserving life, such as feeding, hydration and normal medical care. The statement of the United States Bishops' Pro-Life Committee, Nutrition and Hydration: Moral and Pastoral Considerations, rightly emphasizes that the omission of nutrition and hydration intended to cause a patient's death must be rejected and that, while giving careful consideration to all the factors involved, the presumption should be in favor of providing medically assisted nutrition and hydration to all patients who need them. To blur this distinction is to introduce a source of countless injustices and much additional anguish, affecting both those already suffering from ill health or the deterioration which comes with age, and their loved ones."

1998 Oct Professional educationVeterans Affairs Faculty Program (EPEC for veterans). First Leadership Conference is held in Warrenton, Virginia. Report for the RWJF grant ($982,000). VA Faculty steering committee included: Christine Cassel; Timothy Quill; James Hallenbeck; Kelley Skeff; James Tulsky. Among the first VA Faculty Leaders were David Casarett, David Lowenthal, Thomas Prendergast (Soros/PDIA), and James Cleary (Soros/PDIA).
1998 Nov

Hastings Center's Humans and Nature Project hosts the first meeting with the International Union for Conservation of Nature (IUCN), a step toward drafting the Earth Charter. Three more meetings would follow, rotating between the Hastings Center and the Pocantico Center.

Four years later, in 2002, the Humans and Nature Project would spin off to become the Center for Humans and Nature, with Strachan Donnelly as president. Bruce Jennings would join Donnelly in directing the new organization. (Jennings is best known for his work in medical ethics. In 1987 he was associate project director of the Center's important Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying, and in 2007 advised the 3-year project to update the Guidelines on Termination of Life-Sustaining Treatment.)

1998 Dec

Public EngagementFinanced by a $39,900 grant from RWJF in 1997, the Radio and Television News Directors Foundation was able to "research, write, produce and disseminate The Journalist's Resource Guide on End-of-Life Issues."  Eric Swanson, executive director of RTNDA at the time, was named project director for the grant. (Swanson became chief operating officer of Common Cause several years later.)  In December, 1998, RTNDF produced the guide: Covering the Issues of Death and Dying.

The guide misinforms on several important court cases.  For example, following is a summary of the Cruzan case.  It confuses  "feeding tubes" with "machines," and neglects the fact that hearsay evidence was used by the lower court to determine Nancy Cruzan's supposed wishes:

"1990 – The U.S. Supreme Court rules against Nancy Cruzan’s parents, who wanted to disconnect life-support systems from their daughter, an accident victim living in a persistent vegetative state. The High Court rules there was insufficient evidence that Nancy Cruzan would have wanted life-sustaining equipment removed, and sends the case back to the State of Missouri. Missouri state courts—after hearing more witnesses provided by the Cruzans—allow her to be taken off feeding tubes. After the machines are removed, Cruzan dies."

With regard to the Quinlan case, the authors sought the expert opinion of T. Patrick Hill of Park Ridge Center in Chicago (pg. 18).  The guide does not disclose that Mr. Hill had been director of education for Choice in Dying, and advocated euthanasia in limited circumstances (ref: International Task Force FAQ, Q. #14).

Choice in Dying is cited throughout the manual, and is described as "well known for creating the first living will in 1967."  There is no mention that at that time -- 1967-- the organization was overtly pro-euthanasia.  (For a critical review of living wills, see:  N. Valko, "Of Living Wills and Butterfly Ballots")

The guide not only recommends Choice in Dying as a source, but there's a call to action when it offers a "Story Idea:"

"What is your state’s law regarding advance directives?  Are there any changes in the works? How many people use advance directives? Choice in Dying (202/338-9790) can provide a state-by-state breakdown of laws governing living wills and the appointment of health care agents. Is there anything in your state’s law that makes it easy or difficult for people to express their end-of-life preferences?"

Meanwhile, Compassion in Dying is described mildly as an  "advocacy group [that] sponsored the court challenges to New York and Washington state laws banning physician-assisted suicide."  Elsewhere in the guide, Compassion in Dying is listed as a resource that "provides counseling, emotional support and information for terminally ill patients and intensive pain management, comfort or hospice care, and rational suicide."

1998 Dec

National Hospice Outcomes Planning (RWJF)

National Hospice Work Group (NHWG) and National Hospice Organization (which becomes NHPCO) launch the planning phase of what would be a 3-year study of the effectiveness of hospice care "to create systems and processes that allow patients to 'die with dignity.' . . . A goal of the completed project is to create a large, national, integrated database of what works best, and when, in managing hospice patients."

NHPCO and NHWG seek the following outcomes:

  • Comfortable Dying,
  • Safe Dying,
  • Self Determined Life Closure [?]
  • Effective Grieving.

Studies were conducted at the following sites from 1998-2000:

  1. Hospice of Winston-Salem (NC)
  2. Hospice of North Central Florida (Gainesville, FL)
  3. Hospice of the Bluegrass (Lexington, KY)
  4. Center for Hospice and Palliative Care (Cheektowaga, NY)
  5. Trinity Care Hospice (Torrance, CA)
  6. Hospice of North Central Ohio (Ashland, OH)
  7. Hospice of Chatham County (Pittsboro, NC)
  8. Valley Hospice (Steubenville, OH)
  9. Hospice of the Piedmont (High Point, NC)
  10. Hospice of the Florida Suncoast (Largo, FL)
  11. Hospice of Palm Beach County  (West Palm Beach, FL)
  12. Hospice of the Western Reserve (Cleveland, OH)
  13. Hospice of Louisville (Louisville, KY)
  14. San Diego Hospice (San Diego, CA)
  15. Hospice of the Valley (San Jose, CA)
  16. Hospice Care Corporation (Kingwood, WV)

Evaluation Advisory Panel Members:  Carolyn Cassin, M.P.A. (VistaCare); Melanie Merriman, Ph.D. (formerly with Vitas Healthcare); Peggy Parks, Ph.D. (Health Care Financing Administration -- Medicare);  Judi Lund Person (Carolinas Center for Hospice and End of Life Care); True Ryndes, A.N.P., M.P.H. (National Hospice Work Group); Brad Stuart, M.D. (VNA & Hospice of Northern California); Joan Teno, M.D., M.S. (Center for Gerontology and Health Care Research, Brown University); Diana Wilkie, Ph.D., R.N. (University of Washington School of Nursing).

Working Group Members (from the hospices):  Kathy Egan, M.A., B.S., R.N. (Hospice Institute of the Florida Suncoast); Marilyn Follen, M.S.N, R.N. (Proactive Health Services);  Laurel Herbst, M.D. (San Diego Hospice); Mindy Lawrence, R.N., B.S.N., O.C.N., C.R.N.H. (Houston Hospice); Susan Mann, B.A., R.N. (Hospice Inc., Wichita, KS); Patricia Murphy (VNA & Hospice of Northern California); Jean Parzuchowski, R.N., M.S. (Hospice of Michigan); Jean Tilley (Lutheran Hospice, Irmo, SC);

RWJF funding to National Hospice and Palliative Care Organization (NHPCO):

  1998  ID #35597  $64,673
  1999 ID #36684 $347,365
  2001 $749,969

(see also:  March, 2002 -- AARP Andrus grant for National Quality Partnership Program)

1999   Pain Relief Promotion Act of 1999 (HR 2260; S 1272)  AAHPM and Partnership for Caring opposed the legislation, alleging that it would have a chilling effect on physicians' prescribing opioids in sufficient dosage to alleviate pain.

Professional educationRoman Catholic EPEC” 
In 1999, Myles Sheehan, S.J., MD, was awarded a Soros PDIA grant to create EPEC for Catholics:

"Catholic hospitals are one of the major providers of healthcare in the United States. This project focuses on improving care of the dying through an educational program, at the community level, for parishes and physicians. The curriculum will discuss the Catholic tradition of death and dying, respect for human dignity, pain & symptom relief, and recognizing the inevitability of natural death."

Sheehan worked with Supportive Care of the Dying and Partnership for Caring.  The result was unveiled in 2002 in “Recovering Our Traditions.”

1999 Mar Professional educationMedical Textbook Revision.  Karen Kaplan of Choice in Dying/Partnership for Caring later listed what she and Last Acts considered to be the best medical texts on end-of-life care.
1999 May Institutional changeMeeting the Challenge: Twelve Recommendations for Improving End-of-Life Care in Managed Care is officially released at a National Press Club conference in Washington, DC.  Five managed care organizations endorsed the study's recommendations:  Aetna/US Healthcare, Allina Health System, Fallon Health Care Plan, Harvard Pilgrim Healthcare, and HealthPartners. (Funded by RWJF; conducted by CAEPP at EDC.)
2000   National Hospice Organization reorganizes to form National Hospice and Palliative Care Organization (NHPCO).
2000   Institutional changeNational Hospice Work Group, collaborating with National Hospice and Palliative Care Organization (NHPCO) launches project: "Increasing Access to Hospice."  The project is funded in part through a $125,000 grant from the Nathan Cummings Foundation to the Hastings Center, awarded in 2000.  The study led to the 2003 publication of "Access to Hospice Care: Expanding Boundaries, Overcoming Barriers" (588Kb PDF) as an insert in the Hastings Center Report
2000   Choice in Dying begins formal reorganization, to become Partnership for Caring.
2000 Jan

VITAS founder Hugh Westbrook (Florida resident) arranges a $13.5 million gift to found Duke University Institute on Care at the End of Life. Three years later, Westbrook and his wife Carole Shields (People for the American Way) contribute an additional $3 million. By 2004, Soros/Kornfeld/RWJF grantee Richard Payne, MD, would be the Institute's director.

[Next: EPEC2]

2000 Feb

Professional educationELNEC (End-of-Life Nursing Education Consortium) is launched, following research that began with a textbook study in 1997. ELNEC is end-of-life education for nurses, similar to EPEC (EOL education for physicians). ELNEC uses a "train-the-trainer" model.

Funding from RWJF to American Assn. of Colleges of Nursing (AACN): $3,337,195

  • 1997 -- $35,712; Strategy meeting on nursing education to improve EOL care (#31451)
  • 1997 -- $27,116; ELNEC--Strategy meeting (G. Bednash)
  • 2000 -- $846,999; ELNEC support (#40766; Ann Rhome)
  • 2000 -- $2,224,543; Nursing faculty development in EOL care (#37617; G. Bednash)
  • 2002 -- $202,825; Evaluation of nursing faculty development in EOL care (A. Rhome)
2000 Mar March 7: Byock & Quill: "Responding to Intractable Terminal Suffering"
2000 Apr Schiavo:  Terri is moved from nursing home to Hospice of Florida Suncoast facility.
2000 Apr

Institutional changeApril 20: RWJF awarded $4.7 million to Diane Meier and Christine Cassel to establish Center to Advance Palliative Care (CAPC) at Mount Sinai School of Medicine in New York City. The Center, working with the American Hospital Assn. and EPEC at the AMA, will develop tools and standards to promote palliative care in hospitals. (Grant #37515, 1999). Cassel and Meier were known for their several articles, written with Timothy Quill, in support of assisted suicide.

Related funding from RWJF:

1999 ID #37515 Mount Sinai School of Medicine - CAPC $4,742,893
2001 ID #41465 California Health Foundation and Trust $50,000
2001 ID #41466 Maine Hospital Association, Inc. $50,000
2001 ID #41844 Mount Sinai School of Medicine - CAPC $36,618
2001 ID #43121 San Diego Hospice $86,400
2001 ID #41464 West Virginia University Foundation, Inc. $50,000
2001 ID #43952 Mount Sinai School of Medicine - CAPC $661,040
2002 ID #46432 Bard Group, LLC $225,545
2002 ID #46285 Sutton Group, LLC $400,150

2000 Jun Public engagementJune 5-6: RWJF awards $100,000 to Marian Gray Secundy, PhD, at Tuskegee University's Center for Bioethics in Research and Health Care, to host a Roundtable Discussion on African-American Perspectives on End-of-Life Care. The forum commissioned nine papers that "would serve as the framework for a future national conference." On 2/27/01, ten of the participants met to finalize plans for the national conference ("Last Miles" — held in Atlanta in February, 2004). Marian Gray Secundy had suffered a stroke in 2000. She left Tuskegee and moved to Washington, DC. in mid-2002. On December 17, 2002 she died of a heart attack while visiting her daughter in New York. Subsequent grants for the work went to Richard Payne, MD, at North General Hospital in New York, and it would be Dr. Payne and his organization — IIPCA — that would host "Last Miles."  [Next:  EPEC2]
2000 Jun

Shift in priorities:  away from "individual choice"

Joanne Lynn, Hal R. Arkes*, et al.: Rethinking Fundamental Assumptions: SUPPORT's Implications for Future Reform.

The second phase of SUPPORT had failed.  Last Acts noted in 1996:

"A second phase of [SUPPORT] revealed even more disturbing findings.  The researchers designed a special intervention using nurses to facilitate communication between patients and health care professionals, provide more accurate assessments of how long a terminally ill patient might live, and provide the patient and family with a  means of expressing their wishes regarding treatment--including pain control and heroic measures such as resuscitation.

Despite the diligence of the nurses and other members of the health care team, the intervention failed to change the circumstances of death.  For example, the amount of time patients spent in the intensive care unit before dying was unchanged, and reports of pain did not decrease.  About a third of the families lost most or all of their savings caring for the patient."

In Rethinking Fundamental Assumptions, Dr. Lynn et al. conclude that better communications (advance directives) and personal choice will not improve death in America; the entire medical system and popular culture should be reformed, creating "a default glide path" for the dying patient.   J Am Geriatr Soc 48:S214-S221, 2000

*(not to be confused with Hadley Arkes of Amherst)

2000 Jul Callahan: "Rationing, Equity, and Affordable Care" (Health Progress magazine)
2000 Aug Partnership for Caring is named National Program Office for Last Acts
2000 Sep

Public engagementSeptember: Bill Moyers' On Our Own Terms airs on public television. $2.7 million from RWJF for the $6.25 million production.

In addition to the television broadcast, On Our Own Terms featured a local activism component. Moyers provided coalition leaders with outreach materials such as press releases and instructions on hosting meetings to discuss the broadcast. And during the broadcast, viewers were encouraged to call in for information, and to join local coalitions and national agencies that had collaborated in the broadcast production. Compassion in Dying, an organization that promotes assisted-suicide, provided volunteers to answer some of the phone lines.  

The local activism component — the coalitions — would provide the framework for Last Acts'  Rallying Points (see below). Rallying Points would launch a few months later, in January, 2001.

Prior to broadcast, Partnership for Caring hosted a Capitol Hill reception featuring Sen. John D. Rockefeller (D-WV), Sen. Susan Collins (R-ME), Sen. Ron Wyden (D-OR), Rep. Jan Schakowsky (D-IL), James Oberstar (D-MN), Frances Glendening (First Lady of Maryland), Juan Williams, Daniel Tobin, MD, Joanne Lynn, MD, and Marian Gray Secundy.  (See page 3 of PfC's newsletter Voices, Winter, 2000 for a report with photos; also Americans for Better Care of the Dying website.)

Funding included:
From Nathan Cummings Foundation, Inc.

1997 Educational Broadcasting Corporation $40,000
1998 Educational Broadcasting Corporation $500,000

From Robert Wood Johnson Foundation:

1999 ID #35477  $2,750,000  (Last Acts site listed grantee as Public Affairs Television, Inc;  RWJF Annual Report indicates grantee was Educational Broadcasting Corp.)

2000 ID #38964 American Association of Retired Persons (AARP) $560,000 (for a special companion piece in Modern Maturity.  The title of the lead piece was "The Last Taboo.")

[Next: First Rallying Points conference (Jan 2001)]

2001 Jan

Public engagementKaren Orloff Kaplan of Partnership for Caring calls the first Rallying Points meeting in Newport Beach, California, on January 8. This first conference is a gathering of about 300 people from across the US who participated in Bill Moyers' On Our Own Terms program. Rallying Points would not be formally launched until the next year (see February, 2002). Its purpose is "a bottom-up approach to changing the attitudes towards death and dying of consumers, providers and health care institutions. It is intended to complement the top-down strategies of Last Acts and other organizations that work at the national level to change the public mindset . . . "

[Next:  RP resource centers (Feb 2002) ]

2001 Feb

Public engagementFaith in Action national program office moves to Wake Forest University School of Medicine in North Carolina.  The RWJF grant report notes:  "This $100-million expansion is a seven-year initiative . . . that is supporting the start-up of up to 2,000 new Faith in Action coalitions, with special consideration to programs that are designed to reach low-income or underserved communities.  Faith in Action, Generation 3 will try to reach these groups through organizations that are connected to them, such as the National Council of La Raza, which represents Latinos; the Islamic Society of North America, which represents Muslims; African-American congregations; and groups that work in rural areas. These organizations may help Faith in Action, Generation 3 identify sites that it might not learn about on its own."  The program office at Wake Forest received over $15 million from RWJF from 2001-2004, which did not include the grants to coalitions, each of which were about $35,000.

In October, the Family Caregiver Alliance will host a conference

To see lists of coalitions by state, visit the Faith in Action website.   Here is a sample list of Faith in Action grants, circa 2002-2003.

2001 Jun Western groupCalifornia:  In Bergman v. Chin, jury finds Dr. Chin guilty of negligence in under-prescribing pain medication, and awards $1.5 million to Bergman.
2001 Sep

Public engagementFinding Our Way: Living With Dying in America

A 15-part newspaper series carried by Knight-Ridder, meant to build on Moyers' television series. As Partnership for Caring wrote in their newsletter, "Building on the momentum of the highly successful community outreach associated with last year’s PBS airing of On Our Own Terms, Moyers On Dying which had an audience nearly 60% larger than the PBS prime-time average the local coalitions hope to stimulate a similar response with Finding Our Way."

Funding for Finding Our Way: $300,000 from RWJF to Daniel Tobin's "Life Institute;" and $150,000 from Samuels Foundation to Partnership for Caring.

Though the program had been planned long before September 11, Last Acts released the new program as part of a grief management program in response to the World Trade Center attack, with the headline "Nation's Largest Health Foundation Commits Multi-Million-Dollar Response to Terrorism."

2001 Oct

In conjunction with Compassion in Dying's case Bergman v. Chin, the California legislature passes Assembly Bill 487.   Last Acts cites the legislation as an exemplary state initiative in their November, 2002, report Means to a Better End:

"This case inspired the California legislature to pass Assembly Bill 487,
signed into law October 4, 2001. The new law requires that physicians who
fail to prescribe, administer or dispense adequate pain medication be charged with unprofessional conduct and be investigated by the California Medical Board’s Division of Licensing. Physicians found guilty of undertreating pain must complete a pain-management education program."

2001 Oct

Public engagementLast Acts enlists Hollywood:

Seminar hosted by the Last Acts Writers Project, October 17, 2001, brought Compassion in Dying together with Last Acts to coach television and movie writers on end-of-life scripts.  Subjects covered included the Wendland case, and Bergman v. Chin.  Panelists included

  • Nancy N. Dubler, author and director, Division of Law and Ethics, Montefiore Medical Center, Bronx, NY; member of the American Bar Association's Commission of Legal Problems of the Elderly.
  • Vicki Michel, co-chair, Los Angeles Bar Association/Medical Association Joint Committee on Biomedical Ethics; authored amicus brief in the Wendland right-to-die case (in favor of removing Robert Wendland's food & hydration(
  • Michael Gilfix, Gilfix & LaPoll, Palo Alto, California (Partnership for Caring)
  • James Geagan, lead trial counsel in Bergman v. Chin, represented the Compassion in Dying Federation.
  • Moderator: Terrance A Sweeney, vice-president of Paulist Productions; moderator of Humanitas Master Writers Workshops in Los Angeles.

Co-Sponsors:  The American Bar Association; The End of Life Work Group of the National Association of Attorneys General; Freelance Committee of the Writers Guild; Los Angeles County Medical Association/Bar Association Joint Committee on Biomedical Ethics; Partnership for Caring and the Compassion in Dying Federation.

In 2002, Not Dead Yet remarked on the bias in this conference, noting that the Wendland case was discussed extensively, but only the losing side (Compassion in Dying et al.) was represented.  Principals of Not Dead Yet were knowledgeable in the case, having filed an amicus brief in support of allowing Robert Wendland to live.  Not Dead Yet would also object to Last Acts' portrayal of Michael J. Fox as a dying man, rather than as a person living with Parkinson's. 

(Moving death-acceptance upstream, to the moment of diagnosis, is arguably part of the process of moving palliative care and hospice upstream.  Michael J. Fox's description of himself as a dying man so early in the course of his illness demonstrates the sad outcome of such a plan.)

Partnership for Caring's Fall, 2001, newsletter claimed "story lines on ER, NYPD Blue, Gideon’s Crossing and City of Angels [also Touched by an Angel, Law & Order, and CSI], can be attributed to the Writers Project."  Noah Wyle of ER would become spokesperson for RWJF's "Cover the Uninsured Week" in addition to promoting the Last Acts message.

2001 Oct October 26-27:  Family Caregiver Alliance, funded by RWJF, hosts national conference for state policy-makers, and provides technical assistance to Hillary Clinton to produce the Lifespan Respite Care Act.  (RWJF grant #40402; $231,530).
2001 Dec

December 5; Washington, DC.  Alliance for Health Reform (AHR)  hosts a briefing titled "Approaching Dying:  Improving How We Pay for Care Near the End of Life."    Paid for by RWJF. (The RWJF 2001 Annual Report shows they gave $1.5 million to AHR over 3 years).  There is no indication as to how many journalists or legislators attended the brown-bag lunch, but the online transcript includes Karen Kaplan's abbreviated summary of Last Acts and description of "the gold standard" in end of life care.  Also in the transcript is Edward Howard (AHR) relating an early connection between Alliance for Health Reform and Karen Kaplan:

"Karen Kaplan . . . is President and CEO of the Partnership for Caring which is an organization with roots that go back more than, what, half a century in helping those approaching death and their families. . . . She founded and ran the Center for Social Policy and Practice at the National Association for Social Workers where, as I was telling Don [Schumacher], she served as sort of the business incubator, if you will, of the Alliance for Health Reform a number of years ago."
(AHR Chair and Vice-Chair are Senators Jay Rockefeller and Bill Frist).


Institutional change December 12: National Consensus Project is launched at a leadership meeting in New York City. (This is a Partnership for Caring project; convened by Diane Meier). Goal: "to arrive at a mutually agreed upon definition of palliative care and identify the standards and guidelines necessary for the practice of high quality palliative care."
Collaborating to produce the consensus statement:

American Academy of Hospice and Palliative Medicine (AAHPM);
Center to Advance Palliative Care (CAPC);
Hospice and Palliative Nurses Association (HPNA);
National Hospice and Palliative Care Organization (NHPCO);
Partnership for Caring (PfC).

Click here for info on people and fundingSteering committee includes: Diane Meier, Betty Ferrell, Robert Arnold, Andrew Billings, Mary Labyak, Charles von Gunten, Judith Peres, True Ryndes, Russell Portenoy.

In 2004, the group produces the first consensus document.  (see Clinical Practice Guidelines for Palliative Care, April, 2004)


Professional educationRWJF awards Richard Payne, MD, and North General Hospital in New York, $446,990 (grant #43073) for "the EPEC2 Project: End-of-life care education for African-American health care professionals." This later became known as the "APPEAL Project." Meanwhile, Project on Death in America awards Payne $166,224 to create the Initiative to Improve Palliative Care for African-Americans (IIPCA).

IIPCA aims to eliminate racial disparities in access to end-of-life care.  The question becomes, "what is optimum care?"   In 2001, Dr. Payne reported on the disparate views between African-American  physicians and white physicians.  The Last Acts movement had been built on inferences from the SUPPORT study:  that patients do not want (and should not request) life-prolonging procedures.  African-American physicians, it seems, were 180-degrees off of the Last Acts course.  Dr. Payne wrote (emphasis added):

"There appear to be significant differences in attitudes between African-American and white physicians about care at the end of their patients’ lives and their own (Mebane et al., 1999). For example, white physicians more often view tube feedings as “heroic” measures in terminally ill patients than do African-American physicians (58 percent vs. 25 percent). In this same study, 36 percent of white physicians accept physician-assisted suicide (PAS) as a treatment alternative, while only 26.5 percent of African-American physicians do. When asked about care for themselves at the end of life, this study also observed startling differences between white and black physicians. For example, if in PVS, African-American physicians were six times more likely than whites to request aggressive treatment. In a scenario in which the doctors might be brain damaged but not terminally ill, the majority of both groups did not want aggressive treatment, but African-American physicians were five times more likely than whites to request specific aggressive treatment (23 percent vs 5 percent) and white physicians were two times more likely to request PAS than African Americans (22.5 percent vs. 9 percent). "

[Institute of Medicine. National Research Council. In: Improving Palliative Care for Cancer. National Academy Press.  Washington DC, Foley & Gelband, p156, 2001.]

2002 Jan January 3-4: Funded in part by $75,000 from Project on Death in America, Richard Payne and IIPCA host their first conference, "Heritage, Health, and Hope," moderated by Juan Williams.
2002 Feb Public engagement February: Last Acts formally announces the Rallying Points project. Four months prior, RWJF awarded $12 million to Karen Orloff Kaplan and Partnership for Caring (director of Last Acts) to establish Rallying Points and build upon the 300+ grass roots coalitions established by Bill Moyers' public television broadcast On Our Own Terms.
Click here for larger map.
Click red Resource Center names to view their funding.
Rallying Points coalitions click for MDP grant info click for MBC grant info click for HFS grant info

Partnership for Caring named four resource centers that would counsel the coalitions. Three of the centers were regional centers as well as specialists in a field of concern to the activists:

  • Midwest Bioethics Center a/k/a Center for Practical Bioethics (Midwest region; specializing in advance directives; home of "Community-State Partnerships");
  • Hospice of the Florida Suncoast (Eastern region; specializing in community-level public education);  [see below: Terri Schiavo]
  • Ira Byock's Missoula Demonstration Project (Western region; specializing in community-based research and developing needs assessments)

and the National Resource Center on Diversity in End-of-Life Care, directed by Alta Consulting Group, in Washington, DC, was named as a resource to promote culturally sensitive end-of-life care in minority communities.

That year (2002) Partnership for Caring paid to:

  • Midwest Bioethics Center:  $301,200
  • Hospice of the Florida Suncoast:  $300,000
  • Life's End Institute (Missoula):  $300,000
  • Alta Consulting:  $300,000
  • Stewart Communications (social marketing firm):  $376,732

Sample activities:

  • Hospice of the Florida Suncoast provides ELNEC training for Carolinas hospice nurses (annually).
  • Through Midwest Bioethics, Rallying Points announces (August 2003):  "The Carolinas Center for Hospice & End of Life Care (NC & SC) will present an "Advance Care Planning Summit: Bringing Vision into Focus" featuring William Colby, JD, author of Long Goodbye: The Deaths of Nancy Cruzan"
  • The resource centers create guides on how to start a coalition, how to host town hall meetings, diversity in EOL care -- at the Carolinas Center web site.
  • Coalitions were encouraged to use the online "Community Tool Box" provided by the University of Kansas.  For an example of the tools offered, explore Chapter 30: "Principles of Advocacy" ("Identifying Opponents," and "Encouraging Involvement of Potential Opponents."). Chapter 35 features an "Overview of Opposition Tactics."
[ Next: Partnership for Caring, right-to-die and euthanasia advocate group that directed Rallying Points, transforms again into "Last Acts Partnership," and receives another large grant.]
2002 Feb

February 12: Minimally Conscious State (MCS): definitions and diagnostic criteria Neurology. 2002 Feb 12;58(3):349-53.

Developed from meetings of the Aspen Neurobehavioral Conference Workgroup.
Authors:  Joseph T. Giacino, PhD; Stephen Ashwal, MD; Nancy Childs, MD; Ronald Cranford, MD; Bryan Jennett, CBE, MD, FRCS; Douglas I. Katz, MD; James P. Kelly, MD; Jay H. Rosenberg, MD; John Whyte, MD, PhD; Ross Zafonte, DO.

2002 Mar

NHPCO receives $100,000 grant from AARP Andrus Foundation for NHPCO's National Quality Partnership Program.  Objective of the program is:

"to develop performance measures derived from the following primary goals – or outcomes – of hospice and palliative care:"

  • Comfortable Dying,
  • Safe Dying,
  • Self Determined Life Closure [?]
  • Effective Grieving.
2002 Jun Compassion in Dying's pain control case -- Bergman v. Chin -- is settled by an Alameda County, CA, judge.  Dr. Chin is required to pay 150% of the Bergman's attorney fees (James Geagan, the lead attorney, was a Compassion in Dying cooperating attorney). 
2002 Jun Rosalynn Carter (honorary chair of Last Acts) and Hillary Clinton are the featured speakers at the Family Caregiving Conference held by the National Health Council and National Quality Caregiving Coalition.  Press release gives a nod to Lifespan Respite Care Act which Sen. Clinton had introduced the previous month; as well as to RWJF's $100 million commitment to Faith in Action.
2002 Sep National Association of Attorneys General (NAAG) president Drew Edmondson (Oklahoma) hosts the first of three "listening conferences" as part of a NAAG Presidential Initiative to promote state advance directive reforms and state pain initiatives.
2002 Nov

Institutional changeNovember: RWJF's Means to a Better End: A Report on Dying in America Today. November 18th press conference announcing the results features James Towey, Drew Edmondson (National Association of Attorneys General), and Judith Peres of Partnership for Caring/Last Acts. RWJF's quarterly newsletter Advances featured a summary of the project. (The newsletter also interviews PfC's Judith Peres, and provides several revealing comments. One example, particularly ironic in light of the Schiavo case: "In one study, 55 to 75 percent of people in the ICU said that they were hungry and thirsty, and in moderate to severe pain. That's not how people want to die.")

Last Acts provided public relations information to state coalitions.  For example, a press release was provided for distribution by the Maine Hospice Council.

Be sure to visit the interactive map of the US [click here, then click on the first item, "Means to a Better End"] showing which states meet their standards. For example, the map shows that based on an American Bar Association assessment, Florida merits an "A" for its advance directives laws.

2003 Feb Institutional changeLast Acts Palliative Care Committee produces "On the Road from Theory to Practice"
2003 Feb

Cassel & Quill "Position Paper" on Assisted Suicide. They recommend that medical groups do not take a position on PAS. Instead, they urge a position of "studied neutrality." 
Annals of Internal Medicine.  Vol. 138, Issue 3, pp. 208-211.

2003 Mar AARP's Modern Maturity magazine publishes article supporting assisted-suicide.
2003 Apr

NHPCO hosts a Research Conclave of about 30 leading palliative care experts.  A press release states: "One of the primary purposes of the conclave was to identify priorities for research funding that NHPCO can support. NHPCO intends to advocate with Congress, the National Institutes of Health, the Veterans Administration, and with private foundations and individuals interested in supporting research to advance the field."  [An 85-page transcript of the meeting is available online.]

 Donald Schumacher remarked:

"NHPCO is about ready to change its face pretty dramatically over the next couple of months and then through the next year. One of our initiatives in addition to finding, moving into a building that would be in Washington, focusing in on end of life care, global leadership center - an opportunity for us to expand the care that we’ve been doing at end of life to other areas of the field, such as focusing in on care for with persons with HIV and AIDS; and also diversity, care for children and adolescents, section on spirituality…"

Christina Puchalski (Last Acts Spirituality Task Force convener), noted:

"we’re really pretty brand new with [developing tools to measure] spirituality even though there’s thousands of years of thought and literature behind it. What we need to do is to translate that and some of us are trying to do that, that thousands of years of thought into measures we might use, for example, in end of life research. So someone may be in spiritual distress, but that’s not necessarily spiritual unhealthiness, it might be spiritual health - so we have to just keep that in mind, that differentiation."

Participants included (in alphabetical order):

  • Kimberly Acquaviva, Ph.D., MSW (Hospice of Florida Suncoast);
  • Susan Block, M.D. (PDIA);
  • Ira Byock, M.D.;
  • David Casarett, M.D., M.A (Greenwall, Commonwealth Fund, NIH);
  • Stephen Connor, Ph.D. (PDIA, AARP, RWJF);
  • Kathleen (Kathy) Egan, MA, BSN (Hospice of Florida Suncoast, NIH);
  • Perry Fine, M.D. (Partnership for Caring; VistaCare);
  • John Finn, M.D. (AAHPM, Hospice of Michigan);
  • Kathleen Foley, M.D. (PDIA);
  • Joanne Hilden, M.D. (PDIA; Cleveland Clinic);
  • Rabbi Barry Kinzbrunner, MD (VITAS; AAHPM);
  • Jean Kutner, M.D. (PoPCRN; Univ. of Colorado; RWJF);
  • Gwendolyn London, D.Min.;
  • Joanne Lynn, M.D., MA, MS;
  • Neil MacDonald, CM, MD;
  • Melanie Merriman, Ph.D., M.B.A.;
  • Frederick Meyers, M.D;
  • Robert Milch, M.D.;
  • Susan Miller, Ph.D., MBA;
  • Sean Morrison, M.D.;
  • J. Cameron Muir, M.D., FAAHPM;
  • Steven Passik, Ph.D.;
  • Elizabeth Pitorak, MSN, RN, CHPN (RWJF; Hospice of the Western Reserve);
  • Christina Puchalski, M.D. (RWJF);
  • True Ryndes, ANP, MPH (Partnership for Caring; RWJF);
  • Donald Schumacher, Psy.D (Partnership for Caring; RWJF);
  • Karen Steinhauser, Ph.D.;
  • Patti Thielemann, PhD;
  • Diana Wilkie, Ph.D., R.N.
2003 Apr Chair of the Palliative Medicine Review Committee (PMRC), Steven Radwany, MD, travels to Cuba. PMRC is a joint effort of American Academy of Hospice and Palliative Medicine (AAHPM) and the American Board of Hospice and Palliative Medicine (ABHPM), and was formed to accredit palliative medicine residency programs.
2003 May Institutional changeMay 15: National Association of Attorneys General (NAAG) Listening Conference Improving End-of-Life Care (Midwest Bioethics, PfC, RWJF)
2003 Jul Edward Yellig, MD, medical director of Hospice of Wake County, North Carolina, writes an article titled "Palliative Sedation" which is published in the Wake County Physician, the newsletter of the Wake County Medical Society  (Summer--3rd Quarter,  2003).  The article was a case study on the use of terminal sedation, coupled with withdrawal of food and fluids, to end the life of a 68-year old tobacco farmer who was suffering from dementia.
2003 Jul

PDIA and Kornfeld Foundation collaborate on a palliative care fellowship program to train physicians in palliative care, and to establish palliative care as a recognized sub-specialty.  $1.9 million would fund 13 programs:

Round One (2003-2005):

  • The Palliative Care Program at Marshfield Clinic, Marshfield, WI; Michael Claessens, M.D.
  • The Hospice/Palliative Training Program at the University of New Mexico Health Sciences Center, Albuquerque, NM; Walter Forman, M.D.
  • Combined Fellowship in Pediatric & Adult Palliative Medicine at the Medical College of Wisconsin Affiliated Hospitals, Milwaukee, WI; Bruce Himelstein, M.D.
  • The Pain and Palliative Care Service in the Department of Neurology of Memorial Sloan-Kettering Cancer Center, New York, NY; Richard Payne, M.D.
  • Center for Palliative Studies at San Diego Hospice, San Diego, CA; Charles von Gunten, M.D., Ph.D., FACP
  • The Palliative Care and Home Hospice Program at Northwestern; Memorial Hospital, Chicago, IL; Jamie von Roenn, M.D.
  • Palliative Care Fellowship Program, Section of Palliative Care and Medical Ethics, University of Pittsburgh, Pittsburgh, PA; Linda King, M.D.

Round Two (2004-2006):

  • The Palliative Care and Home Hospice Program at Northwestern Memorial Hospital/Feinberg School of Medicine, Northwestern University, Chicago, IL; Jamie von Roenn, M.D.
  • The George Washington University Palliative Care Fellowship Program, Washington, D.C.; Elizabeth Cobbs, M.D.
  • Fellowship in Palliative Medicine, Duke University Medical Center, Durham, NC; James Tulsky, M.D., Anthony Galanos, M.D.
  • Children’s Hospital Boston Pediatric Advanced Care Team/Dana; Farber Cancer Institute, Boston, MA; Joanne Wolfe, M.D.
  • The Harry R. Horvitz Center for Palliative Medicine/Cleveland; Clinic Taussig Cancer Center, Cleveland, OH; Susan LeGrand, M.D.
  • Montefiore Medical Center Palliative Care Program/Albert Einstein; College of Medicine, Bronx, NY; Sean O'Mahony, M.D.; Peter Selwyn, M.D., M.P.H.
In addition, PDIA announces that "as part of its exit strategy," it will award AAHPM $1.2 million for the purpose of creating a College of Palliative Medicine.
2003 Jul Hemlock Society (Denver, CO) changes its name to End of Life Choices.  They  launch a new web site.
2003 Aug Physicians for a National Health Program issue call for universal health care, published in JAMA. Principals of PNHP include Christine Cassel and Marcia Angell. The PNHP web site lists endorsers, including: Diane Meier, Edward Yellig, Robert Truog, James Tulsky, Daniel Sulmasy. See the Physicians Working Group for Single-Payer National Health Insurance website for the proposal.
2003 Aug Institutional changeRWJF announces funding available for Palliative Care Leadership Centers, a $4.5 million program directed by Diane Meier's Center to Advance Palliative Care (CAPC) at Mount Sinai in New York.   The centers provide mentoring and site visits for health care professionals planning a new hospice or hospital palliative care program.  By 2004, 150 healthcare institutions would participate in the program.

The foundation will award grants to these Palliative Care Leadership Centers:

  • Fairview Foundation (Fairview Health Services)-- Minneapolis, MN
  • Massey Cancer Center of Virginia Commonwealth University Health System-- Richmond, VA
  • Medical College of Wisconsin-- Milwaukee, WI
  • Mount Carmel Health System-- Columbus, OH
  • Palliative Care Center of the Bluegrass-- Lexington, KY
  • University of California, San Francisco-- San Francisco, CA
2003 Oct

On October 15, by order of Pinellas-Pasco Circuit Judge George Greer, the feeding tube is removed from Terri Schindler-Schiavo.  Terri Schiavo had been moved from a nursing home to Hospice House - Woodside, a facility owned and managed by Hospice of the Florida Suncoast (a Rallying Points and Last Acts resource center).

That same day, National Hospice and Palliative Care Organization (NHPCO) issued a press release emphasizing that Hospice House-Woodside was merely following orders:  "Hospice does not make decisions for patients or families, nor sit in judgement [sic] of their choices."  The release closes with the comment that  "NHPCO wishes to acknowledge the quality care being provided and hopes that the family, caregivers and all those touched by this tragic situation may find peace and healing in the days ahead."  NHPCO apparently thought this was end-of-discussion with regard to Terri Schindler-Schiavo.

Far from ending discussion, the feeding tube removal brought outspoken criticism from the public.

While many in the right-to-die and EOL movement  (including bioethicists) either supported Michael Schiavo or maintained a position of "studied neutrality," the Terri Schindler-Schiavo's parents received support from people across the country and around the world. Medical professionals, talk radio, columnists, disability activists, and the general public were horrified that Terri Schiavo would be intentionally starved and dehydrated to death.

On October 20, five days after the tube was removed, the Florida legislature called a special session, and the next day "Terri's Law" (Florida House Bill 35-E) was passed and signed by Governor Jeb Bush.  This paved the way for Governor Bush to issue an executive order to resume Terri's feeding.  

On October 29 Michael Schiavo filed suit against Governor Bush, claiming that Terri's Law was unconstitutional.

(The Schiavo case involves health care decisions without a written advance directive.  This is a matter of "health care agency" -- a subject addressed by the Samuels Foundations' health care agency initiative centered at Partnership for Caring.)

2003 Nov

November 9: Boston Globe reports, "After 10 years, $200m effort on dying reaches its own end" (by Carey Goldberg, Globe Staff, 11/9/2003)

". . . In particular, the Project on Death in America, financed by billionaire George Soros and the Robert Wood Johnson Foundation, poured more than $200 million over the last decade into end-of-life programs and research.

But now the Project on Death is itself dying, and the Robert Wood Johnson Foundation is phasing out almost all related projects and shifting toward childhood obesity and the nursing shortage."

2003 Nov November: Rallying Points National convention; Boston.  The theme is social change.
2003 Dec Partnership for Caring hosts a conference call with their partners, announcing their merger with Last Acts. They change their name to Last Acts Partnership.

[Next: Last Acts Partnership receives more money. ]

2004 Jan

Last Acts Partnership is awarded $2.25 million from RWJF as technical assistance for the Last Acts program (4/2004-3/2007).  On 1/7/04, Karen Kaplan and Tom Koutsoumpas, Jr. (VITAS Healthcare; Partnership for Caring) host an event at the National Press Club to announce the launch of Last Acts Partnership.

Under the new name, the group emphasized lobbying efforts for national and state legislation.  As of July, 2004, they were encouraging their members to work for passage of the following bills:

  • S. 1629 - Children's Compassionate Care Act    (sponsors)
  • S. 538 - Lifespan Respite Care Act (sponsors) introduced by Hillary Clinton (D-NY); passed; now goes to HR 1083
  • H.R. 3127 - Pediatric Palliative Care Act     (sponsors)
  • H.R. 2883 - Living Well with Fatal Chronic Illness Act     (sponsors)
  • H.R. 1863 - National Pain Care Policy Act    (sponsors)
  • H.R. 1083 - Lifespan Respite Care Act     (sponsors)
  • S. 2545 - Advance Directives Improvement and Education Act of 2004 (S. 2545)  (sponsors) Introduced by Senators Rockefeller and Nelson.
  • S.RES. 391 - S. Resolution 391, which would designate the second week of December as Conversations Before the Crisis Week    Introduced by Sen. Nelson

By the end of 2004, Karen Orloff Kaplan would leave Last Acts Partnership to join Wye River Group on Healthcare. Finally, Last Acts Partnership closed, but one of its projects moved to a new location.

[Next: September, 2004, Rallying Points continues at NHPCO]

2004 Feb

LAST MILES OF THE WAY HOME:  A National Conference to Improve End-of-Life Care for African-Americans held in Atlanta starting February 26. This was the national conference envisioned by Marian Gray Secundy's roundtable in June, 2000.

(The opening luncheon featured a keynote address by Faith in Action spokesperson Della Reese).

2004 Feb Richard Payne, MD, is named director of Duke University's Institute on Care at the End of Life (Durham, NC).  Duke Divinity School's dean said Dr. Payne "will continue the institute's focus on faith communities and on diverse populations, especially African-Americans, while also extending its reach in teaching, research and outreach."
2004 Mar

Pope John Paul II addresses the International Congress on Life-Sustaining Treatments and Vegetative State, and denounces the practice of withholding hydration and nutrition (for patients whose organs have not shut down, and who can assimilate food and water):

"I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory . . .

Death by starvation or dehydration is, in fact, the only possible outcome as a result of their [nutrition and hydration] withdrawal. In this sense it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission." --Pope John Paul II, 3/20/2004

2004 Apr

The National Consensus Project  (NCP), comprised of

  • American Academy of Hospice and Palliative Medicine (AAHPM)
  • Center to Advance Palliative Care (CAPC)
  • Hospice and Palliative Nurses Association (HPNA)
  • Last Acts Partnership
  • National Hospice and Palliative Care Organization (NHPCO),

announces in a press release the publication of  Clinical Practice Guidelines for Quality Palliative Care.  These guidelines are to be the standard for palliative care services across the country.  The guidelines acknowledge:

Funding from:   Supported by:

  • American Academy of Hospice and Palliative Medicine
  • Arthur Vining Davis
  • Center to Advance Palliative Care
  • The Charitable Leadership Foundation
  • Hospice of the Western Reserve
  • Hospice and Palliative Care Nurses Association
  • Last Acts Partnership
  • Mayday Fund
  • National Hospice and Palliative Care Organization
  • Purdue Pharma Fund
  • The Robert Wood Johnson Foundation
  • Beth Israel Medical Center, New York, NY
  • City of Hope National Medical Center
  • Harvard Medical School Center for Palliative Care
  • The Hospice of the Florida Suncoast
  • Massachusetts General Hospital
  • Hertzberg Palliative Care Institute, Mount Sinai School of Medicine
  • National Hospice Work Group
  • National Institutes of Health, Warren Grant Magnuson Clinical Center
  • New York University, Steinhardt School of Education, Division of Nursing
  • Palliative Care Center and Hospice of the North Shore
  • San Diego Hospice and Palliative Care
  • University of Pittsburgh School of Medicine
  • Vitas HealthCare

In an effort to define palliative care, the manual provides a diagram similar to the following diagram.  The guidelines position palliative care opposite lifesaving therapy, as shown here:

palliative care vs life-saving therapy

The guidelines note that the population served encompasses all persons with life-threatening or debilitating illness (in other words, not only patients who are "imminently dying," or even "terminally ill.")  See for example a sample discussion of ethical guidelines for palliative care (page 36 of the Guidelines).

2004 Jun End of Life Choices and Compassion in Dying begin merger to form Compassion & Choices.
2004 Sep

Public EngagementRWJF grants National Hospice and Palliative Care Organization (NHPCO) $2.3 million to continue Rallying Points. Kathy Brandt is named Project Director. Brandt had been Director of Operations at Hospice of Florida Suncoast. Under Karen Kaplan's direction, Rallying Points had featured three regional resource centers: Missoula; Midwest Bioethics; Hospice of the Florida Suncoast. Kathy Brandt was director of the Eastern resource center, which was Hospice of the Florida Suncoast.

Rallying Points then, and now, featured lectures from attorney William Colby, who represented the Cruzans in arguing for the removal of Nancy Cruzan's feeding tube.

A press release from NHPCO, posted simultaneously at the Rallying Points web site, suggests that the mission continued to be activism at the state and local level:

"The grant will provide support to the more than 350 community and state coalitions working to improve end-of-life care at the local level in health care systems, hospices and palliative care programs, physician offices, the workplace, faith communities, local government, and other community-based organizations. Additionally, it will provide support for consumer engagement and community outreach efforts, develop new resources, build a comprehensive consumer Web site and information center, and offer a consumer services program."

[Next: Rallying Points changes name to "Caring Connections," below.]

2004 Nov

Rallying Points' Katherine Brandt moves from Hospice of the Florida Suncoast, to NHPCO as Vice President, Professional Leadership and Consumer and Caregiver Services.

At NHPCO, Rallying Points changes its name to Caring Connections, "a nationwide consumer outreach initiative." Caring Connections has two web sites: one for coalitions, and one for consumers that is billed as a "one-stop-shop" for EOL information. The consumer site calls on the public to "tell your story to your congressperson," and provides contact information.

[Next: Another $4.9 million to Rallying Points, dba "Caring Connections."]

2004 Dec

NIH State-of-the-Science Conference on Improving End-of-Life Care, Dec 6-8.  The purpose is to chart the course of end-of-life research funding.  Sponsored by NINR and OMAR of NIH; co-sponsored by CDC, CMMS, NCI, NIMH, and National Institute on Aging.  Funded by AHRQ.  Preliminary studies done by RAND and its partner Veterans Administration Greater Los Angeles Healthcare System.

Participants included RWJF/PDIA project directors such as Betty Ferrell,  Joan Teno, LaVera Crawley, Sean Morrison, Charles von Gunten, James Tulsky, and Harvey Chochinov. 

The conference produced a consensus statement.  Sample quotations from the draft statement:

  • "Respect for choice (patient or proxy), especially at the end of life, is a central value.  However, patient and provider expectations and/or the desire for resource-intensive therapies with a small chance of benefit may clash with societal priorities."
  • "For example, in the case of dementia, providers often do not even recognize dementia as a terminal illness."
  • "Encouragement to initiate advance directives (i.e., legal documents ...) alone have not been shown to improve outcomes in non-dementia patients; however, the reasons for this are not well known. Little evidence of the effect of advance directives on care of people with impaired decision-making ability was presented. Advanced-care planning—a process for preparing for the end of life, including discussion of death—is different from advanced directives and needs further study to examine its effectiveness.
  • Spirituality is consistently defined as a critical domain in end-of-life care; research on interventions to improve spiritual well-being is very limited. Preliminary evidence of a specific intervention—dignity therapy—shows positive outcomes for both the patient and family in terms of satisfaction and heightened sense of dignity, purpose, meaning, and grief management."
  • "Infrastructure:  Create a network of end-of-life investigators and well-defined cohorts of patients to facilitate coordinated interdisciplinary, multisite studies. This should include establishing new networks of end-of-life investigators, as well as expanding existing networks (such as the National Clinical Trials Cooperative Groups) so they have a critical mass of end-of-life investigators and appropriate study populations. These networks should enhance training of a new generation of interdisciplinary scientists (through funding mechanisms such as K-awards, T32s, and R25s)."
2005 July Caring Connections (formerly Rallying Points) receives $4.9 million from Robert Wood Johnson Foundation (9/2005 - 8/2007). Project Director is Kathy Brandt.
    Updated on September 22, 2009 7:15
Unpublished work © Copyright 2004-2009  I. Whitlock.