Two Decades to an American Culture
How a handful of progressive foundations
and quasi-government agencies
set out to provide equitable distribution of health
and in the process, created a duty to die and a culture
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.
The concept of hospice is introduced. Bioethics centers develop across the country. Concepts such as futile care theory and duty to die are introduced.
SUPPORT study is conducted and published. Oregon passes the Death With Dignity Act. Soros launches Project on Death in America; the Robert Wood Johnson Foundation launches Last Acts.
US Supreme Court decisions Vacco
v. Quill and Washington
v. Glucksberg. Project on Death and RWJF's end-of-life projects focus on change within the states, and changing culture — popular culture, and professional practices. Soros and RWJF announced the end of funding.
Pilot projects that were launched with PDIA and RWJF funding move forward.
From 1996 forward, the Robert Wood Johnson
Foundation (RWJF) and George Soros's Project on Death
in America (PDIA) implemented end-of-life (EOL) programs
that fit into a three-point strategy to change American
culture. Bioethicist Daniel Callahan (healthcare
rationing proponent), argued that America was a death-denying
society, and suggested a three-point plan for cultural
change. The strategy for change was published in a 1995 Hastings Center Report. Callahan's three points
were later refined in recommendations from the Institute
of Medicine. Those three areas of emphasis -- professional
education, institutional change, and public engagement
-- provided the framework for RWJF funding thereafter.
In the timeline below, we have flagged the EOL programs
with corresponding icons:
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
|High-profile groups located mostly
in the western US;
The lower-profile group -- Choice
in Dying, later known as Partnership for Caring -- evolved
from New York's Euthanasia Society of America.
Best known for introducing living wills. Shown at left is their logo circa 1988, when the group was known as "Society for the Right to Die."
The high-profile western movement includes Hemlock
Society, Oregon Right-to-Die, Death With Dignity, and Compassion in Dying (now known as Compassion
& Choices). These have been forthright
advocates of PAS by lethal overdose. They are known
for their direct approach to forcing change, such as through
litigation. In 2003 and 2004, some of these groups renamed
themselves in an effort to present a softer image to the public.
Living wills, social engineering, and imposed death.
Meanwhile, Choice in Dying ( 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
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
In 1997, at the time of the second Last Acts Leadership conference, palliative
care (symptom treatment) was promoted in the context of patient
comfort. But it was also about economics. New
futility guidelines would be necessary for a sustainable healthcare
system (just and equitable distribution of scarce healthcare
resources) that end-of-life care architects envisioned.
A number of the RWJF and PDIA scholars originated from Canada
or the United Kingdom, where the health care system is different
from that of the US. We hope that these designers recognize
the problems in the Canadian and British models, and will
not replicate them here in the United States.
In November, 2003, both Robert Wood Johnson Foundation and
Soros announced the end of funding for their end-of-life programs.
At roughly the same time, Partnership became "Last Acts
Partnership," but by the end of 2004 Karen Kaplan had
moved on to Wye River Group
on Healthcare (a liberal, New Democrat healthcare
think tank), and to the faculty at Mount Sinai School of Medicine.
Nevertheless, many of the end-of-life programs begun in the
early 1990s will most likely continue with other funding sources.
The purpose of most RWJF funding over the years has been to
provide seed money; creating demonstration projects to be
expanded by other funders or the federal government. Regardless of whether or not any of the Last Acts/PDIA programs
become federalized, the legacy will continue in the mainstreaming
of ideas and policies once thought controversial, but which
are now commonplace in textbooks, accreditation courses, and
- 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
- non-reversible sedation, usually through the use of opioids
- more casual use of opioids — within a medical and social culture that is futilitarian by design
- chronic disease is terminal disease
- redefining "imminent." A prognosis of
"imminent death" can mean that the patient might
die in a day or so; or within a year.
Look for these programs to be carried on by National Hospice
and Palliative Care Organization (NHPCO), the American Academy
of Hospice and Palliative Medicine (AAHPM), American Board
of Hospice and Palliative Medicine (ABHPM), and continued
local activism led by state hospice organizations. Funding
will continue from NIH and other sources. Soros's PDIA has
funded a chair at AAHPM to found a college for palliative
medicine. Porter Storey was appointed to head up that project
at AAHPM. NHPCO's board and steering committees reads like
a who's who of the RWJF/Soros movement. In spite of the fact
that the Soros/RWJF-funded doctors [see "the
death cadre"] drew resounding criticism from their
colleagues regarding the Terri Schiavo case, this clique is
still loved and sought out by the old-line news media as representative
of correct medical thought. The following chronology is a rough outline of the fusion
and metamorphosis of right-to-die, palliative care, and hospice
under the aegis of bioethics and progressive ideology.