Two Decades to an American Culture of Death

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

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

• Introduction
• 1963-1988:
  The concept of hospice is introduced. Bioethics centers develop across the country. Concepts such as futile care theory and duty to die are introduced.
• 1989-1996:
  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.
• 1997-2003:
  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.
• 2004-present:
  Pilot projects that were launched with PDIA and RWJF funding move forward.
• Bibliography
  

Introduction

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

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

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

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

"the Supreme Court upheld the right of states to legislate whether to ban or to permit assisted suicide.  The Supreme Court concluded that the distinctions between assisted-suicide and either withholding or withdrawing life-sustaining treatment were 'important,' 'logical,' and 'rational.'  As a result, it is constitutionally permitted for states to allow competent persons to refuse life-sustaining treatments while banning physician assisted suicide."
[ 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 western US;
		The lower-profile group -- Choice in Dying, later known as Partnership for Caring -- evolved from New York's Euthanasia Society of America.  Best known for introducing living wills. Shown at left is their logo circa 1988, when the group was known as "Society for the Right to Die."

Radical right-to-die.

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

Living wills, social engineering, and imposed death.

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:

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

Partnership for Caring directed the national program office for RWJF's Last Acts, and garnered millions in funding from RWJF, Fan Fox and Leslie R. Samuels Foundation, Nathan Cummings Foundation, Mayday Fund, and PDIA.  Partnership also 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, palliative care (symptom treatment) was promoted in the context of patient comfort.  But it was also about economics.  New futility guidelines would be necessary for a sustainable healthcare system (just and equitable distribution of scarce healthcare resources) that end-of-life care architects envisioned.  A number of the RWJF and PDIA scholars originated from Canada or the United Kingdom, where the health care system is different from that of the US.  We hope that these designers recognize the problems in the Canadian and British models, and will not replicate them here in the United States.

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

The purpose of most RWJF funding over the years has been to provide seed money; creating demonstration projects to be expanded by other funders or the federal government.  Regardless of whether or not any of the Last Acts/PDIA programs become federalized, the legacy will continue in the mainstreaming of ideas and policies once thought controversial, but which are now commonplace in textbooks, accreditation courses, and popular culture:

• withholding/withdrawing nutrition and hydration, even when the patient is able to assimilate food and/or fluids (perpetuation of the myth that a death by dehydration is painless)
  
• non-reversible sedation, usually through the use of opioids
• 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.

[Next]