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:
Researchers included Joan Teno, MD; Stuart Youngner, MD;
Donald J. Murphy, MD.
- Beth Israel Hospital in Boston;
- Cleveland MetroHealth Medical Center;
- Duke University Medical Center (Durham, NC);
- Marshfield Medical Research Foundation (Marshfield,
- UCLA School of Medicine.
[Next: Hastings Center introduces
Wanzer, S. H., D. D. Federman, S. J. Adelstein, C. K. Cassel, E. H. Cassem, R. E. Cranford, E. W. Hook, B. Lo, C. G. Moertel, P. Safar, and et al. "The Physician's Responsibility toward Hopelessly Ill Patients. A Second Look." N Engl J Med 320, no. 13 (1989): 844-849.
This was a "second look" at the issue of assisted suicide, as addressed in the 1984 article also titled "The Physician's Responsibility toward Hopelessly Ill Patients." This 1989 article is generally recognized as a reference in support of physician-assisted suicide.
World Health Organization defines "palliative care"
as "the active total care of patients whose disease
is not responsive to curative treatment . . . [when]
control of pain, of other symptoms, and of psychological,
social and spiritual problems is paramount." [WHO
(World Health Organization). Cancer Pain Relief and
Palliative Care. WHO Technical Report Series 804.
Geneva: WHO, 1990.]
Patient Self-Determination Act -- Sponsored by Sen.
John Danforth, R-MO. Danforth's advisor was Myra Christopher,
now at the Center for Practical Bioethics (formerly
known as the Midwest Bioethics Center). Myra Christopher
and Midwest Bioethics later become key players in Last
Acts. [ 1999,
Community-State Partnerships, below.]
Cruzan case decided; Nancy
Cruzan dies. This has been called the first Supreme
Court right-to-die case, and established the precedent
for the Oregon assisted dying law.
Radford professor Matthew J. Franck
explains that the Cruzan decision set the stage for
Terri Schiavo's death. From an opinion piece in National
Review, March 30, 2005:.
At first glance the Cruzan decision
may have seemed to be a pro-life ruling. After all,
the immediate effect was to keep Nancy Cruzan alive,
and to endorse, in the law, a state's presumption
in favor of life. The hysterical ire of four dissenting
justices who wished to make death an easier choice
seemed to bolster the good-news interpretation of
Cruzan at the time. And the Court's opinion by Chief
Justice William Rehnquist did hold that "a State may
properly decline to make judgments about the 'quality'
of life that a particular individual may enjoy, and
simply assert an unqualified interest in the preservation
of human life."
The sentence I just quoted did
not end there, however, but continued as follows:
"to be weighed against the constitutionally protected
interests of the individual." And therein lies the
twofold failure of Rehnquist's reasoning in this case.
First, the chief justice identified
the "preservation of human life" not as a principle
but as a mere "interest," however "unqualified" with
respect to "'quality' of life." And unlike principles,
which a court vindicates and defends against violation,
interests, as Rehnquist noted, are to be "weighed"
against other interests. This is the ordinary work
of legislators, but here Rehnquist embraced the trend
of recent decades that it is also the work of judges
when deciding constitutional cases.
What is the "constitutionally
protected interest" that is to be weighed in the balance
against the state's interest in life? Here is Rehnquist's
second error, and the one that sets us on the road
to the deathwatch in Pinellas Park, Florida. Holding,
on the thinnest basis in precedent, that under the
Fourteenth Amendment "a competent person has a constitutionally
protected liberty interest in refusing unwanted medical
treatment," the chief announced with astonishing casualness
that "for purposes of this case, we assume that the
United States Constitution would grant a competent
person a constitutionally protected right to refuse
lifesaving hydration and nutrition."
William Colby represented the Cruzan
family, demanding Nancy Cruzan's removal from life support.
William Colby would become a fellow at Midwest Bioethics
Center, and would
tour hospices as a speaker for Rallying Points.
for the Right to Die and Concern for
Dying merge to form
Choice in Dying.
||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).
||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. "
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
||RWJF announces an initial
investment of $23 million in an interfaith caregiver
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,
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).
||First step towards IOM's
Institute of Medicine (IOM) "Workshop
on Dying, Decisionmaking, and Appropriate Care" in
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).
||Supportive Care of the
Dying, a consortium of Catholic health care providers,
is founded in Oregon in response to legalization of PAS.
With Dignity Education Center is founded in California.
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
||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.
Death With Dignity Act (Measure 16) is approved by
voters. Oregon Right to Life provides a good summary of the subsequent events.
||Reagan announces he
has Alzheimer's; goes into seclusion. (He lives almost
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
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.
||Robert Wendland's wife
refuses to allow his feeding tube to be reinserted.
For information on the ensuing case, see
Death with Dignity Legal Defense and Education Center
is founded for the purpose of defending Oregon's Ballot
Measure 16 to legalize PAS.
||American Alliance of
Cancer Pain Initiatives is launched (from Wisconsin Cancer
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
"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."
vitae (March 25)
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:
Judith C. Ahronheim,
Sean Morrison OSI Scholars at Mt. Sinai Medical Center in NY;
Andrew Billings ( OSI Scholar, MGH/Harvard);
Wm. Breitbart (OSI Scholar, Memorial Sloan-Kettering
Nicholas Christakis (U.Chicago);
Stuart Farber (U. Wash.);
Carlos Gomez (U.Va.);
Sarah Goodlin (White River Junction, VT
Steven Miles (U.Minn; Wanglie case);
|Thomas Smith (Va. Commonwealth);
James Tulsky (Duke);
Charles von Gunten (Northwestern);
David Weissman (Med. Coll. of Wisconsin).
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).
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:
- Institutional change;
- 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.]
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").
Susan Block, M.D., Soros/PDIA Faculty Scholars
Thomas Bryant, M.D., J.D., Non-Profit Management
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
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
William Stubing, Greenwall Foundation;
Charles Terry, Rockefeller family; and
Mary Ann Zehr, Council on Foundations
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.
EPEC Project (Education for Physicians on End-of-Life Care)
Linda Emanuel [who was raised and educated in England;
degrees from Oxford and Cambridge], develops the EPEC
curriculum with Charles F. von Gunten, MD, PhD;
Frank D. Ferris, MD [Canadian]; and Russell Portenoy,
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
Demonstration Project (which later became Life's
End Institute) is founded in Missoula, Montana, by Ira
Byock and Barbara Spring. Initial funding came
Cummings Foundation and Project on Death in America.
In addition, Mayday provided $150,000 (1996-1999) for
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 ).
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
- 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
- Institutional change;
- Public engagement.
We have provided a list of participants
in the first Last Acts conference on a separate
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,
This meeting generated a list of objectives and tactics
-- or "Challenges"
- Create opportunities for talking about death
- 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")
- Promote Advance Care planning
- Improve communications skills of health care professionals
- Strengthen health care professional education related
to death and dying.
- Palliative Care -- make it an integral part of
patient care. (normalize it; move it upstream)
- Quantify. Develop measurement measures. (Outcome-based
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
||NY forum on SUPPORT
-- Hastings Center, Callahan
||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.
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
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.
awards $297,000 grant to the Center
for Applied Ethics and Professional Practice (CAEPP) at the Education Development Center (EDC) in Massachusetts,
to convene the National Task Force on End-of-Life
Care for Patients in Managed Care, "23 experts
in health care policy, managed care, geriatrics, long-term-care,
bioethics, palliative care, medicine and nursing, and
hospice." The Task Force convened in three times
during 1997, and reviewed surveys from "all managed
care organizations in the United States providing capitated
services to Medicare enrollees."
In May, 1999, the Task Force would
produce a widely publicized report, Meeting
the Challenge: Twelve
Recommendations for Improving End of Life Care in Managed
Steering committee: Steven Miles, Bruce
Jennings, and Mildred Solomon (EDC); committee members
included Ira Byock, Joanne Lynn, Kathleen Foley.
the Challenge is published and five
managed care firms are on board.]
||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.
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
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.
On 9/24, Rep. Ralph Hall (D-TX) introduces Assisted
Suicide Funding Restriction Act (HR
4149); and in the Senate, Sen. Byron Dorgan
(D-ND) introduces the same bill S.
2108; (104th Congress). Both HR 4149 and S
2108 contained the following proviso:
SEC. 3. RULE OF CONSTRUCTION.
Nothing in this Act, or in an amendment made by this
Act, shall be construed to create any limitation relating
- the withholding or withdrawing of medical treatment
or medical care;
- the withholding or withdrawing of nutrition or
- abortion; or
- 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,
of Clinical Societies: Conference on the Ethics of Managed
Care (fourth in a series that began in 1987); held on
"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
Funding: RWJF grant #28153 for $49,000 to American Geriatrics
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).
September 22, 2009 7:08
Unpublished work © Copyright 2004-2009 I. Whitlock.