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
And how they hope to secure their legacy . . .
Featuring the collaboration of:
the Hastings Center, the Robert Wood Johnson Foundation
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
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."
[ 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 located mostly in the
||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."
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
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:
- withholding/withdrawing nutrition and hydration
- 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 administered
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,
(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
- 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
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
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.
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"
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.
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.
||Dame Cicely Saunders introduces "specialized
care for the dying" to US.
||Florence Wald invites Saunders
to join Yale as visiting faculty
||The term "hospice" is introduced
in England (St. Christopher's hospice)
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,
||An ad hoc committee of Harvard
faculty defines "brain death."
||Kubler-Ross, New Age spiritualist,
produces book: On Death and
Center is founded in New York by Daniel Callahan and psychiatrist
Willard Gaylin, MD. (For a concise history of Hastings and bioethics,
is Bioethics by bioethicist Dianne Irving, Ph.D.)
||Kubler-Ross testifies to Senate
on death with dignity
||PVS is defined
||Balfour Mount (Canada) substitutes
the term "palliative care" for the term "hospice."
||May: Karen Ann Quinlan case
decided; she was removed from respirator. (She died of pneumonia
Society is founded in California by Derek Humphry
President's Commission for the Study of Ethical Problems in Medicine (established by Pres. Carter in 1979) publishes "Deciding to Forego Life-Sustaining Treatment." Alexander Capron, executive director; Joanne Lynn, project director. Both Capron and Lynn were board members of Concern for Dying.
The commission addressed living wills, "natural death acts," benefits of durable power of attorney. The commission also recommended model bill to establish hospital ethics committees.
Colorado Governor Richard Lamm, addressing the Colorado
Health Lawyers Association, declares that elderly people have
a "duty to die."
"Like leaves which fall off a
tree forming the humus in which other plants can grow, we've
got a duty to die and get out of the way with all of our
machines and artificial hearts, so that our kids can build
a reasonable life."
New England Journal of Medicine publishes "The Physician's Responsibility toward Hopelessly Ill Patients." ( 310, no. 15 pp. 955-9). The article was the result of a conference at the Countway Library in Boston, convened by the Society for the Right to Die. The article's ten authors were:
- Sidney H. Wanzer, M.D., Department of Medicine, Emerson Hospital, Concord, Massachusetts.
- S. James Adelstein, M.D., Professor of Radiology and Dean for Academic Programs, Harvard Medical School.
- Ronald E. Cranford, M.D., Director, Neurological Intensive Care Unit, Hennepin County Medical Center, Minneapolis, and Chairman, Ethics Committee, American Academy of Neurology.
- Daniel D. Federman, M.D., Professor of Medicine, Harvard Medical School, and past president, American College of Physicians.
- Edward Hook, M.D., Chairman, Department of Medicine, University of Virginia Medical Center, Charlottesville.
- Charles G. Moertel, M.D., Chairman, Department of Oncology, Mayo Clinic and Medical School, Rochester, Minnesota.
- Peter Safar, M.D., Director, Resuscitation Research Center, University of Pittsburgh Medical School.
- Alan Stone, M.D., Professor of Law and Psychiatry, Harvard Law School.
- Helen B. Taussig, M.D., Professor Emeritus of Pediatrics, Johns Hopkins University School of Medicine.
- Jan van Eys, M.D., Department of Pediatrics, University of Texas System Cancer Center and School of Medicine.
In 1989 NEJM would publish a sequel, titled The Physician's Responsibility toward Hopelessly Ill Patients: A Second Look, with many of the same authors. The 1989 article would be a defense of physician assisted suicide. (see March, 1989)
||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.
|| 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.
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:
- 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.
- 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
scoring system for critically ill hospitalized patients:
APACHE (Acute Physiology, Age, Chronic Health Evaluation).
[Next: SUPPORT research is
American Health Decisions (AHD) is founded.
It is a "civic bioethics initiative" of the Hastings Center.
This "health decisions movement" was the pseudo-grass-roots
movement upon which the Midwest Bioethics Center based their
Community-State Partnerships end-of-life coalitions.
AHD's John Stanley (of Wisconsin
Health Decisions; see Appleton
Consensus, below), would be prominent in the second
Last Acts Leadership Conference. Michael
Garland and Ralph Crawshaw (Oregon Health Decisions;
founded 1982-3) would be featured in the first Community-State
Partnership policy brief, because Oregon Health Decisions
provided a model for C-SP. Oregon Health Decisions
(OHD*) "carefully designs community meetings to help
citizens identify values."
* "OHD" is also a commonly used abbreviation
for Oregon Health Department. However, in the present website
and timeline, we will refer to OHD as Oregon Health Decisions,
following the lead of literature from the Midwest Bioethics
Center (Center for Practical Bioethics).
||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)
||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."
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.
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.
vitae (The Gift of Life) -- Vatican provides instruction
on respect for human life.
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
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,
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
"Intervention with the primary intention
of causing death (as distinguished from forgoing treatment
that is deemed inappropriate) has no place in the treatment
of permanently incapacitated patients. However, vigorous
treatment to relieve pain and suffering may well be justified,
even if these interventions lead to an earlier death."
Funding sources included: The Novus
Health Group, the Appleton Medical Center Foundation Inc;
The Raymond Carlson Trust; St. Elizabeth Hospital (Ministry
Health Care, Milwaukee, sponsored by the Sisters of the Sorrowful
Mother); the Theda Clark Regional Medical Center; the Wisconsin
Humanities Committee; The Henry J. Kaiser Family Foundation
(Menlo Park, California); The Upjohn Company; the CIBA Pharmaceutical
Company; Medtronic, Inc. (makes pacemakers); Lawrence University;
the British Medical Association; the University of Leiden
Medical School Programme in Medical Ethics, and The Madsen
Foundation (Copenhagen, Denmark).
Academy of Hospice Physicians is launched at an International
Hospice Institute meeting in Granby, Colorado. AHP would
become American Academy of Hospice and Palliative
Medicine (AAHPM) in 1996. AAHPM's web site
notes: "The Academy [of Hospice Physicians] was the
first physicians' organization in the country to state publicly
its position on what was to become one of the most widely
discussed issues of the decade." The site does
not specify what the 1992 position was, but notes that it
was revised in 1997 "to respond to the U.S. Supreme Court's
decision on PAS." The 1997 statement was neutral on
PAS, but offered guidelines for consideration in case the
states decide to legalize PAS. (Next: June,
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, WI);
- 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
Radford professor Matthew J. Franck explains
that the Cruzan decision set the stage for Terri Schiavo's
death. From an opinion piece in National
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
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,
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
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 physician-assisted suicide.]
||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, 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).
||First step towards IOM's futility
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"
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 a decade.)
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.
||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
||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
"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,
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 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).
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
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"). Participants
Susan Block, M.D., Soros/PDIA Faculty Scholars program;
Thomas Bryant, M.D., J.D., Non-Profit Management Associates,
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;
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.
Demonstration Project (which later became Life's
End Institute) is founded in Missoula, Montana, by Ira
Byock and Barbara Spring. Initial funding came from
Cummings Foundation and Project on Death in America.
In addition, Mayday provided $150,000 (1996-1999) for Missoula's
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 denial:
- 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);
- Institutional change;
- 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"
- 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
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
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
||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 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.
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
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.
On 9/24, Rep. Ralph Hall (D-TX) introduces Assisted
Suicide Funding Restriction Act (HR
4149); and in the Senate, Sen. Byron Dorgan (D-ND)
introduces the same bill S.
2108; (104th Congress). Both HR 4149 and S 2108
contained the following proviso:
SEC. 3. RULE OF CONSTRUCTION.
Nothing in this Act, or in an amendment made by this Act,
shall be construed to create any limitation relating to--
- the withholding or withdrawing of medical treatment or
- the withholding or withdrawing of nutrition or hydration;
- 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, 1997.
of Clinical Societies: Conference on the Ethics of Managed
Care (fourth in a series that began in 1987); held on October
"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."
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
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
Excellence in End-of-Life Care (RWJF): $12 million+ from RWJF
to Ira Byock and his institute based at the Univ. of Montana
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).
On February 27, the Ninth Circuit Court of Appeals dismisses
the district court's decision, claiming the federal court
did not have jurisdiction:
"The plaintiffs in this case are doctors,
patients, and residential care facilities challenging the
facial validity of the State of Oregon's Death With Dignity
Act. Plaintiffs contend the Act violates the First and Fourteenth
Amendments to the United States Constitution, as well as
several federal statutes. The district court found the Act
to violate the Equal Protection Clause and permanently enjoined
its enforcement. Because the federal courts do not have
jurisdiction to entertain Plaintiffs' claims, we vacate
and remand with instructions to dismiss Plaintiffs' complaint."
Hastings Center Report
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."
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.
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.
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
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."
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:
Ahronheim, M.D (Soros/PDIA Faculty Scholar
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.
Joseph Fins, M.D.
(Soros/PDIA Faculty Scholar 1997);
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.
Edward Lowenstein, M.D.;
Diane Meier, M.D.
(Soros/PDIA Faculty Scholar 1995);
Galen Miller (National
Patricia Prem, M.S.W.
(Founder, Project on Death in America);
Puchalski, M.D. (Convener of Last Acts Spirituality
Timothy Quill, M.D.
J.D. (1998 Kornfeld executive director);
Colleen Scanlon, R.N.,
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.;
Stuart Youngner, M.D.
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
- Professional Education;
- Institutional change;
- Public engagement.
25, the board of the American Academy of Hospice and Palliative
Medicine (AAHPM) adopts
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
"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
Karen Kaplan's right-to-die group,
Choice in Dying, posted a summary
of the decisions.
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."
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.
JD, M., Kaplan MPH, Sc.D., Karen (2001). Transforming
death in America: A state of the nation report. Washington,
DC. Prepared for Last Acts.
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
||National Institutes of Health
responds to SUPPORT with a Research Workshop on September 2
titled "Symptoms in Terminal Illness."
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
1997 ID #31569 National Conference of State Legislatures
1999 ID #35554 National Conference of State Legislatures
1999 ID #37549 National Conference of State Legislatures
The manual to assist state legislators would be published
in June, 1998 (see below)
American Health Decisions (AHD)
(Atlanta, GA, and Appleton, WI; with "grass roots" groups
in 13 states) produces The Quest to Die With Dignity
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).
October 29-30: Last
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"
2) Measurement based on standards.
3) Accreditation and Certification
4) Policy and Public
1) Medical Establishment
2) Boomer Consumers
4) Funders of Research and Demonstrations
Death With Dignity Act (ORS 127.800-897) takes effect October
6 when the U.S. Supreme Court dismisses a writ of certiorari
||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."
of Palliative Care (Last Acts Palliative Care
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
- 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
- Marguerite Stevens, Ph.D.--Dartmouth-Hitchcock Medical
- H. James Towey --Florida Commission on Aging with Dignity;
- Connie Zuckerman, J.D.--United Hospital Fund; Hospital
Choice in Dying launches coordinating center
for grant money aimed at "Program to Improve the Selection and
Performance of Health Care Agents." Grant
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,
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
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*,
*1995-97 Soros/Project on Death
in America grant recipients.
** Soros/PDIA grant recipients after 1998.
||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:
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)
control: First step toward Bergman
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.
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.
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
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.
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?”
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
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.)
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
[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)]
published: "State Initiatives in End-of-Life Care Policy
Guide for State Legislators" (funded by RWJF)
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.
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
Marshall's web site is an excellent resource for
facts in the case.
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
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).
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.)
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
"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
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:
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,
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
"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
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."
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
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:
- Hospice of Winston-Salem (NC)
- Hospice of North Central Florida (Gainesville, FL)
- Hospice of the Bluegrass (Lexington, KY)
- Center for Hospice and Palliative Care (Cheektowaga, NY)
- Trinity Care Hospice (Torrance, CA)
- Hospice of North Central Ohio (Ashland, OH)
- Hospice of Chatham County (Pittsboro, NC)
- Valley Hospice (Steubenville, OH)
- Hospice of the Piedmont (High Point, NC)
- Hospice of the Florida Suncoast (Largo, FL)
- Hospice of Palm Beach County (West Palm Beach, FL)
- Hospice of the Western Reserve (Cleveland, OH)
- Hospice of Louisville (Louisville, KY)
- San Diego Hospice (San Diego, CA)
- Hospice of the Valley (San Jose, CA)
- 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
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,
RWJF funding to National Hospice
and Palliative Care Organization (NHPCO):
(see also: March,
2002 -- AARP Andrus grant for National Quality Partnership
||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.
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
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
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.)
||National Hospice Organization
reorganizes to form National Hospice and Palliative
Care Organization (NHPCO).
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
in Dying begins formal reorganization, to become Partnership
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.
(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"
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)
||March 7: Byock & Quill:
"Responding to Intractable Terminal Suffering"
Terri is moved from nursing home to Hospice of Florida Suncoast
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
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.
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
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
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]
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.
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."
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
*(not to be confused with Hadley Arkes
Equity, and Affordable Care" (Health
for Caring is named National Program Office
for Last Acts
Bill Moyers' On
Our Own Terms airs on public television.
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
coalitions and national
agencies that had collaborated in the broadcast production.
Compassion in Dying, an organization that promotes assisted-suicide,
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.
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.)
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
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
[Next: First Rallying
Points conference (Jan 2001)]
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
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
in Action national program office moves to Wake Forest
University School of Medicine in North Carolina. The
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
in Action website. Here is a sample list of
Faith in Action grants, circa
In Bergman v. Chin, jury
finds Dr. Chin guilty of negligence in under-prescribing pain
medication, and awards $1.5 million to Bergman.
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
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
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
"This case inspired the California
legislature to pass Assembly Bill 487,
signed into law October 4, 2001. The new law requires that
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."
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.
||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).
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
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
American Academy of Hospice and Palliative Medicine
Center to Advance Palliative Care (CAPC);
Hospice and Palliative Nurses Association (HPNA);
National Hospice and Palliative Care Organization
Partnership for Caring (PfC).
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)
Payne, MD, and North General Hospital in New York, $446,990
(grant #43073) for "the
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).
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
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.]
||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.
|| 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
|Click red Resource Center names to view
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");
of the Florida Suncoast (Eastern region; specializing
in community-level public education); [see below:
- 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
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):
[ 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.]
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:
of Advocacy" ("Identifying Opponents," and "Encouraging
Involvement of Potential Opponents."). Chapter 35 features
an "Overview of Opposition Tactics."
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
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.
NHPCO receives $100,000
grant from AARP Andrus Foundation for NHPCO's National
Quality Partnership Program. Objective of the program
"to develop performance measures derived from the following
primary goals – or outcomes – of hospice and palliative
- Comfortable Dying,
- Safe Dying,
- Self Determined Life Closure [?]
- Effective Grieving.
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
||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.
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.
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,
release was provided for distribution by the Maine
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.
Acts Palliative Care Committee produces "On the Road from Theory
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."
of Internal Medicine.
Vol. 138, Issue 3, pp. 208-211.
magazine publishes article supporting assisted-suicide.
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."
transcript of the meeting is available online.]
Donald Schumacher remarked:
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
Christina Puchalski (Last Acts Spirituality Task Force convener),
"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
- Susan Block, M.D. (PDIA);
- Ira Byock, M.D.;
- David Casarett, M.D., M.A (Greenwall, Commonwealth
- Stephen Connor, Ph.D. (PDIA, AARP, RWJF);
- Kathleen (Kathy) Egan, MA, BSN (Hospice of Florida
- 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;
- Karen Steinhauser, Ph.D.;
- Patti Thielemann, PhD;
- Diana Wilkie, Ph.D., R.N.
||Chair of the Palliative
Medicine Review Committee (PMRC), Steven Radwany,
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.
15: National Association of Attorneys General (NAAG)
Conference Improving End-of-Life Care (Midwest Bioethics,
||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.
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
- 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):
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
- 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,
- Children’s Hospital Boston Pediatric Advanced Care
Team/Dana; Farber Cancer Institute, Boston, MA; Joanne Wolfe,
- The Harry R. Horvitz Center for Palliative Medicine/Cleveland;
Clinic Taussig Cancer Center, Cleveland, OH; Susan LeGrand,
- 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.
Society (Denver, CO) changes its name to End of
Life Choices. They launch a new
||Physicians for a National
Health Program issue call
for universal health care, published in JAMA. Principals
of PNHP include Christine Cassel and Marcia
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.
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
- Fairview Foundation (Fairview Health Services)-- Minneapolis,
- 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,
On October 15, by order of Pinellas-Pasco
Circuit Judge George Greer, the feeding tube is removed
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
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
(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.)
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
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."
||November: Rallying Points
National convention; Boston. The theme is social change.
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. ]
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
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:
1629 - Children's Compassionate Care Act
538 - Lifespan Respite Care Act (sponsors)
introduced by Hillary Clinton (D-NY); passed; now goes to
3127 - Pediatric Palliative Care Act
2883 - Living Well with Fatal Chronic Illness Act
1863 - National Pain Care Policy Act (sponsors)
1083 - Lifespan Respite Care Act
2545 - Advance Directives Improvement and Education
Act of 2004 (S. 2545) (sponsors)
Introduced by Senators Rockefeller and Nelson.
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]
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).
||Richard Payne, MD, is named
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."
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
Consensus Project (NCP), comprised of
- American Academy of Hospice and Palliative
- Center to Advance Palliative Care (CAPC)
- Hospice and Palliative Nurses Association
- Last Acts Partnership
- National Hospice and Palliative Care
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:
- 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
- New York University, Steinhardt School of Education,
Division of Nursing
- Palliative Care Center and Hospice of the North
- 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:
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).
of Life Choices and Compassion in Dying begin merger to
grants National Hospice and Palliative Care Organization
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.
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
[Next: Rallying Points changes name to "Caring
Rallying Points' Katherine Brandt
moves from Hospice of the Florida Suncoast, to NHPCO
as Vice President, Professional Leadership and Consumer and
At NHPCO, Rallying Points changes its name
Caring Connections, "a nationwide consumer outreach
initiative." Caring Connections has two web sites: one for
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
[Next: Another $4.9 million to Rallying Points, dba "Caring
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
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
- "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
- "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)."
Connections (formerly Rallying Points) receives
$4.9 million from Robert Wood Johnson Foundation (9/2005
- 8/2007). Project Director is Kathy Brandt.
September 22, 2009 7:15
Unpublished work © Copyright 2004-2009 I. Whitlock.