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

Dorgan (D-ND) and Ashcroft (R-MO) begin seeking support for proposed legislation to prevent federal funding of PAS.  The legislation was titled "Assisted Suicide Funding Restriction Act of 1997" (S. 304; companion bill to HR 1003). 

1997 Feb

Oregon: On February 27, the Ninth Circuit Court of Appeals dismisses the district court's decision, claiming the federal court did not have jurisdiction:

"The plaintiffs in this case are doctors, patients, and residential care facilities challenging the facial validity of the State of Oregon's Death With Dignity Act. Plaintiffs contend the Act violates the First and Fourteenth Amendments to the United States Constitution, as well as several federal statutes. The district court found the Act to violate the Equal Protection Clause and permanently enjoined its enforcement. Because the federal courts do not have jurisdiction to entertain Plaintiffs' claims, we vacate and remand with instructions to dismiss Plaintiffs' complaint."

1997 Mar

Hastings Center Report publishes "Is There a Duty to Die?" by John Hardwig.  (Mar-Apr;27(2):34-42.)  Hardwig answers "yes," for the common good.

"Let me be clear. I certainly believe that there is a duty to refuse life-prolonging medical treatment and also a duty to complete advance directives refusing life-prolonging treatment. But a duty to die can go well beyond that. There can be a duty to die before one's illnesses would cause death, even if treated only with palliative measures. In fact, there may be a fairly common responsibility to end one's life in the absence of any terminal illness at all. Finally, there can be a duty to die when one would prefer to live. Granted, many of the conditions that can generate a duty to die also seriously undermine the quality of life. Some prefer not to live under such conditions. But even those who want to live can face a duty to die."

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

Schiavo: George Felos (a founding member of the National Legal Advisors Committee on Choice in Dying) is brought into the case

"[Michael Schiavo] is aware that the issue of withdrawal or refusal of medical treatment for [Terri Schiavo] is a difficult issue in this case and that the ward's parents will need to be involved.  I am not aware of any other interested persons.  Because of the delicate nature of this case, I advised [Michael] to employ counsel who has special expertise in this area of the law.

It is anticipated that the parents will initially be approached gently and informally by Attorney Felos regarding this issue, that Hospice will be involved, and that counseling will be provided to the guardian and the parents to assist with the decision-making process." [Bushnell letter, 5/6/97]

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

Professional educationSoros and RWJF co-sponsor the "National Consensus Conference on Medical Education for Care Near the End of Life," held May 16-17 in Washington, DC.  RWJF granted $41,500 to Harvard Pilgrim Healthcare, Inc, and Susan Block, MD (Director, PDIA Faculty Scholars program); David Barnard, PhD, was co-chair. The conference produced a consensus statement, endorsed by the following people:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1997 Oct

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

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

1997 Oct

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

Byock identified:

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

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

The Palliative Care Task Force included:

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

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

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

1998 Jan

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

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

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

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

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

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

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

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

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

[larger map]
Community-State Partnerships

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

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

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

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

[larger map]

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

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

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

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

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

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

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

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

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

1998 Oct

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

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

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

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

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

1998 Dec

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

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

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

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

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

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

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

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

1998 Dec

National Hospice Outcomes Planning (RWJF)

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

NHPCO and NHWG seek the following outcomes:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[Next: EPEC2]

2000 Feb

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

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

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

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

Related funding from RWJF:

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

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

Shift in priorities:  away from "individual choice"

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

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

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

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

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

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

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

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

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

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

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

Funding included:
From Nathan Cummings Foundation, Inc.

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

From Robert Wood Johnson Foundation:

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

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

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

2001 Jan

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

[Next:  RP resource centers (Feb 2002) ]

2001 Feb

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

In October, the Family Caregiver Alliance will host a conference

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

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

Public engagementFinding Our Way: Living With Dying in America

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

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

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

2001 Oct

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

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

2001 Oct

Public engagementLast Acts enlists Hollywood:

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

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

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

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

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

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

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

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

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


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

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

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

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


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

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

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

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

2002 Jan January 3-4: Funded in part by $75,000 from Project on Death in America, Richard Payne and IIPCA host their first conference, "Heritage, Health, and Hope," moderated by Juan Williams.
2002 Feb Public engagement

February: Last Acts formally announces the Rallying Points project. Four months prior, RWJF awarded $12 million to Karen Orloff Kaplan and Partnership for Caring (director of Last Acts) to establish Rallying Points and build upon the 300+ grass roots coalitions established by Bill Moyers' public television broadcast On Our Own Terms.
Click here for larger map.
Click red Resource Center names to view their funding.
Rallying Points coalitions click for MDP grant info click for MBC grant info click for HFS grant info

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

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

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

That year (2002) Partnership for Caring paid to:

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

Sample activities:

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

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

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

2002 Mar

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

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

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

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

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

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

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

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

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

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

 Donald Schumacher remarked:

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

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

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

Participants included (in alphabetical order):

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

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

Round One (2003-2005):

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

Round Two (2004-2006):

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

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

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

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

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

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

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

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

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

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

2003 Nov

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

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

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

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

[Next: Last Acts Partnership receives more money. ]


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Updated on May 19, 2008 8:23
Unpublished work © Copyright 2004-2008  I. Whitlock.