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). 

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."

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."

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]

Soros 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:

RWJF 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)

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).

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.

$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.*

Community-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]

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)]

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."

Financed 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."

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):

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

“Roman 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.”

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]

ELNEC (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)

April 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

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)

September: 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)]