Two Decades to an American Culture of Death

President's Commission for the Study of Ethical Problems in Medicine (established by Pres. Carter in 1979) publishes "Deciding to Forego Life-Sustaining Treatment." Alexander Capron, executive director; Joanne Lynn, project director. Both Capron and Lynn were board members of Concern for Dying.

The commission addressed living wills, "natural death acts," benefits of durable power of attorney. The commission also recommended model bill to establish hospital ethics committees.

Colorado Governor Richard Lamm, addressing the Colorado Health Lawyers Association, declares that elderly people have a "duty to die." 

"Like leaves which fall off a tree forming the humus in which other plants can grow, we've got a duty to die and get out of the way with all of our machines and artificial hearts, so that our kids can build a reasonable life."

New England Journal of Medicine publishes "The Physician's Responsibility toward Hopelessly Ill Patients." ( 310, no. 15 pp. 955-9). The article was the result of a conference at the Countway Library in Boston, convened by the Society for the Right to Die. The article's ten authors were:

• Sidney H. Wanzer, M.D., Department of Medicine, Emerson Hospital, Concord, Massachusetts.
• S. James Adelstein, M.D., Professor of Radiology and Dean for Academic Programs, Harvard Medical School.
• Ronald E. Cranford, M.D., Director, Neurological Intensive Care Unit, Hennepin County Medical Center, Minneapolis, and Chairman, Ethics Committee, American Academy of Neurology.
• Daniel D. Federman, M.D., Professor of Medicine, Harvard Medical School, and past president, American College of Physicians.
• Edward Hook, M.D., Chairman, Department of Medicine, University of Virginia Medical Center, Charlottesville.
• Charles G. Moertel, M.D., Chairman, Department of Oncology, Mayo Clinic and Medical School, Rochester, Minnesota.
• Peter Safar, M.D., Director, Resuscitation Research Center, University of Pittsburgh Medical School.
• Alan Stone, M.D., Professor of Law and Psychiatry, Harvard Law School.
• Helen B. Taussig, M.D., Professor Emeritus of Pediatrics, Johns Hopkins University School of Medicine.
• Jan van Eys, M.D., Department of Pediatrics, University of Texas System Cancer Center and School of Medicine.

In 1989 NEJM would publish a sequel, titled The Physician's Responsibility toward Hopelessly Ill Patients: A Second Look, with many of the same authors. The 1989 article would be a defense of physician assisted suicide. (see March, 1989)

American Health Decisions (AHD) is founded.  It is a "civic bioethics initiative" of the Hastings Center.  This "health decisions movement" was the pseudo-grass-roots movement upon which the Midwest Bioethics Center based their Community-State Partnerships end-of-life coalitions.  AHD's John Stanley (of Wisconsin Health Decisions; see Appleton Consensus, below), would be prominent in the second Last Acts Leadership Conference.  Michael Garland and Ralph Crawshaw (Oregon Health Decisions; founded 1982-3) would be featured in the first  Community-State Partnership policy brief, because Oregon Health Decisions provided a model for C-SP.  Oregon Health Decisions (OHD*) "carefully designs community meetings to help citizens identify values."

* "OHD" is also a commonly used abbreviation for Oregon Health Department. However, in the present website and timeline, we will refer to OHD as Oregon Health Decisions, following the lead of literature from the Midwest Bioethics Center (Center for Practical Bioethics).

Lawrence University Program in Biomedical Ethics (Appleton, Wisconson) invited representatives from ten countries to create "international guidelines for treatment abatement procedures."  Joanne Lynn (SUPPORT) was one of five writers on the drafting committee.  Other participants included:  Pieter V. Admiraal, M.D., Ph.D. (euthanasia advocate); Robert Arnold, MD (2005 president of AAHPM); Ronald Cranford, MD; Howard Brody, MD; Stuart Youngner, MD; Susan Wolf, JD (Hastings Center); John J. Paris, S.J., Ph.D., Ph.L; John Stanley, PhD.

This second conference discussed the two concerns that arose from the 1987 conference (see above).  A preliminary draft of  Appleton Consensus: Suggested International Guidelines for Decisions to Forgo Medical Treatment was drafted in 1988.  The document was revised, and was finally published in 1989; first in Denmark, then in the US.

Professor John Stanley's "study edition" of the 1988 Appleton Consensus statement is available at the Lawrence University web site, and includes commentary from conference members.   The final edition was published in the September 1992 edition of The Journal of Medical Ethics (Volume 18: Supplement, pp. 1-22).

Four "prima facie moral values or principles" of bioethics predicated the discussion:  autonomy; non-maleficence (avoid harm); beneficence (do good); justice.   We have provided a few samples from the final version, and have underscored some recurring themes.  There is a "conscience clause," but in this case the conscientious objector would be the physician who objects to requests to continue life-prolonging treatment.   Part II addresses "Active Euthanasia:

"Intervention with the primary intention of causing death (as distinguished from forgoing treatment that is deemed inappropriate) has no place in the treatment of permanently incapacitated patients. However, vigorous treatment to relieve pain and suffering may well be justified, even if these interventions lead to an earlier death."

Funding sources included:  The Novus Health Group, the Appleton Medical Center Foundation Inc; The Raymond Carlson Trust; St. Elizabeth Hospital (Ministry Health Care, Milwaukee, sponsored by the Sisters of the Sorrowful Mother); the Theda Clark Regional Medical Center; the Wisconsin Humanities Committee; The Henry J. Kaiser Family Foundation (Menlo Park, California); The Upjohn Company; the CIBA Pharmaceutical Company; Medtronic, Inc. (makes pacemakers); Lawrence University; the British Medical Association; the University of Leiden Medical School Programme in Medical Ethics, and The Madsen Foundation (Copenhagen, Denmark).

Academy of Hospice Physicians is launched at an International Hospice Institute meeting in Granby, Colorado.  AHP would become  American Academy of Hospice and Palliative Medicine (AAHPM) in 1996.   AAHPM's web site notes:  "The Academy [of Hospice Physicians] was the first physicians' organization in the country to state publicly its position on what was to become one of the most widely discussed issues of the decade."   The site does not specify what the 1992 position was, but notes that it was revised in 1997 "to respond to the U.S. Supreme Court's decision on PAS."  The 1997 statement was neutral on PAS, but offered guidelines for consideration in case the states decide to legalize PAS.  (Next:  June, 1997)

Wanzer, S. H., D. D. Federman, S. J. Adelstein, C. K. Cassel, E. H. Cassem, R. E. Cranford, E. W. Hook, B. Lo, C. G. Moertel, P. Safar, and et al. "The Physician's Responsibility toward Hopelessly Ill Patients. A Second Look." N Engl J Med 320, no. 13 (1989): 844-849.

This was a "second look" at the issue of assisted suicide, as addressed in the 1984 article also titled "The Physician's Responsibility toward Hopelessly Ill Patients." This 1989 article is generally recognized as a reference in support of physician-assisted suicide.

World Health Organization defines "palliative care" as "the active total care of patients whose disease is not responsive to curative treatment . . . [when] control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount."  [WHO (World Health Organization). Cancer Pain Relief and Palliative Care. WHO Technical Report Series 804. Geneva: WHO, 1990.]

Patient Self-Determination Act -- Sponsored by Sen. John Danforth, R-MO. Danforth's advisor was Myra Christopher, now at the Center for Practical Bioethics (formerly known as the Midwest Bioethics Center). Myra Christopher and Midwest Bioethics later become key players in Last Acts. [ 1999, Community-State Partnerships, below.]

Cruzan case decided; Nancy Cruzan dies. This has been called the first Supreme Court right-to-die case, and established the precedent for the Oregon assisted dying law. 

Radford professor Matthew J. Franck explains that the Cruzan decision set the stage for Terri Schiavo's death. From an opinion piece in National Review, March 30, 2005:.

At first glance the Cruzan decision may have seemed to be a pro-life ruling. After all, the immediate effect was to keep Nancy Cruzan alive, and to endorse, in the law, a state's presumption in favor of life. The hysterical ire of four dissenting justices who wished to make death an easier choice seemed to bolster the good-news interpretation of Cruzan at the time. And the Court's opinion by Chief Justice William Rehnquist did hold that "a State may properly decline to make judgments about the 'quality' of life that a particular individual may enjoy, and simply assert an unqualified interest in the preservation of human life."

The sentence I just quoted did not end there, however, but continued as follows: "to be weighed against the constitutionally protected interests of the individual." And therein lies the twofold failure of Rehnquist's reasoning in this case.

First, the chief justice identified the "preservation of human life" not as a principle but as a mere "interest," however "unqualified" with respect to "'quality' of life." And unlike principles, which a court vindicates and defends against violation, interests, as Rehnquist noted, are to be "weighed" against other interests. This is the ordinary work of legislators, but here Rehnquist embraced the trend of recent decades that it is also the work of judges when deciding constitutional cases.

What is the "constitutionally protected interest" that is to be weighed in the balance against the state's interest in life? Here is Rehnquist's second error, and the one that sets us on the road to the deathwatch in Pinellas Park, Florida. Holding, on the thinnest basis in precedent, that under the Fourteenth Amendment "a competent person has a constitutionally protected liberty interest in refusing unwanted medical treatment," the chief announced with astonishing casualness that "for purposes of this case, we assume that the United States Constitution would grant a competent person a constitutionally protected right to refuse lifesaving hydration and nutrition."

William Colby represented the Cruzan family, demanding Nancy Cruzan's removal from life support.  William Colby would become a fellow at Midwest Bioethics Center, and would tour hospices as a speaker for Rallying Points.  (1999, Community-State Partnerships, below)

Christine Cassel, MD; Diane Meier, MD; Timothy Quill, MD, produce some of the first published guidelines for assisted suicide: "Care of the hopelessly ill: Proposed clinical criteria for physician-assisted suicide." New England Journal of Medicine, November 5, 1992; 327(19): pp. 1380-4..

Six years later Cassel, Quill, and Meier team up with Sean Morrison to author a "Survey of Physician-Assisted Suicide and Euthanasia," published in NEJM. Meier's letter claiming a "change of heart" on PAS is published in the New York Times immediately after. The next year (1999), the Robert Wood Johnson Foundation grants Meier and Cassel nearly $5 million to found the Center to Advance Palliative Care (CAPC).

There were two waves of funding for FIA:  Faith in Action II (or "Generation 2") authorized $40 million from 1993-1999.  FIA III (1999-2002) authorized $50 million.

Next: see Faith in Action (in February 2001: national program office moves to Wake Forest University in North Carolina).

IOM had been asked to "develop guidelines for identifying and limiting futile treatments" (see "Preface" at http://books.nap.edu/html/approaching/). This workshop determined whether development of guidelines would be feasible. Funded by Commonwealth Fund, in anticipation of SUPPORT results.
Presenters included: Christine Cassel, Kathleen Foley, Robert Burt, Barbara Koenig, and Neil MacDonald.  Joanne Lynn and Joan Teno gave a presentation on SUPPORT (two years before publication of SUPPORT results).

Choice in Dying directs a 5-year project: Integrating Education about Care of the Dying into Existing Medical School Programs. Supported by a grant of over $349,000 from the Greenwall Foundation, Karen Kaplan reported (Transforming Death in America, 2001) that the project "provided a laboratory for 12 medical schools in which they could experiment with various approaches to improving existing curricula about end-of-life care." Participants included

National Hospice Work Group (NHWG) is founded.   True Ryndes, RN, who was a board member of Partnership for Caring, was President and CEO of the NHWG.
The Spring, 2001, Partnership for Caring newsletter describes NHWG:
http://www.partnershipforcaring.org/Resources/pdf/spring2001.pdf

"The National Hospice Work Group was founded six years ago to increase access to hospice and palliative care. It is a coalition of 20 progressive hospice programs around the country whose members include activists who pioneered the hospice movement in the ‘70s and '80s and those who provide fresh professional insights from other industries. . . .

Productive and Proactive
The National Hospice Work Group functions as both a 'think tank' and a 'work tank.'  Its members meet four times a year to share 'best practices.' Best practices are demonstrated ways to provide cost-effective care while maintaining excellent patient outcomes. The Group also develops federal policy recommendations and constructs tools that the hospice community can use to demonstrate the benefits of hospice care."

April: Ira Byock, in American Journal of Hospice and Palliative Care:
http://www.dyingwell.com/prnh.htm

"In my own practice, while I steadfastly refuse to write a prescription with lethal intent or otherwise help the patient commit suicide, I can share with the patient information that he or she already has the ability to exert control over the timing death. Virtually any patient with far-advanced illness can be assured of dying -- comfortably, without any additional physical distress -- within one or two weeks simply by refusing to eat or drink."

Soros's first round of Open Society Institute and Project on Death in America Faculty Scholars include:

Soros' foundation hosts conference at Project on Death in America headquarters: Cummings, RWJF, Commonwealth, AARP and others ("Grantmakers Concerned with Care at the End of Life"). Participants included:

Susan Block, M.D., Soros/PDIA Faculty Scholars program;
Thomas Bryant, M.D., J.D., Non-Profit Management Associates, Inc.;
Christine Cassel, M.D., Milbank Memorial Fund, and Mt. Sinai Medical School Dept of Geriatrics;
Susan Clark, Columbia Foundation;
Karen Davis, Commonwealth Fund;
John Feather, AARP Andrus Foundation;
Kathleen Foley, M.D., Soros/PDIA;
Rosemary Gibson, Robert Wood Johnson Foundation;
David Gould, Ph.D., United Hospital Fund;
Charles Halpern, Nathan Cummings Foundation;
Herbert Hendin, American Suicide Foundation;
Andrea Kydd, Nathan Cummings Foundation;
Thomas Layton, Gerbode Foundation;
Elizabeth Lorant, Soros/Open Society Institute;
Joanne Lynn, M.D., MA, MS., Soros/PDIA board member;
Len McNally, NY Community Trust;
Donald Murphy, M.D., Colorado Collective for Medical Decisions;
Aryeh Neier, Soros/Open Society Institute;
Patricia Prem, M.S.W., Soros/PDIA;
David Rothman, Soros/PDIA;
Fenella Rouse, J.D., Kornfeld Foundation and Mayday Fund;
William Stubing, Greenwall Foundation;
Charles Terry, Rockefeller family; and
Mary Ann Zehr, Council on Foundations

EPEC Project (Education for Physicians on End-of-Life Care)
Linda Emanuel [who was raised and educated in England; degrees from Oxford and Cambridge], develops the EPEC curriculum with Charles F. von Gunten, MD, PhD; Frank D. Ferris, MD [Canadian]; and Russell Portenoy, MD.

RWJF invested $5 million. Soros/PDIA supported the additional leadership through faculty scholarships: von Gunten was PDIA faculty scholar in 1995; Ferris and Portenoy would be named faculty scholars in 1998.

Project 2010 ("Five Wishes;" in Florida) is launched with a grant of $398,000 from RWJF to James Towey's Commission on Aging with Dignity.  This project is credited with inspiring the creation of Community-State Partnerships (below), headed by Midwest Bioethics.

The year 2010 is (roughly) the year in which Baby Boomers will begin reaching the age of 65 (and going on Medicare).  Five Wishes is a type of advance directive that is loosely worded in comparison to many other advance directive forms, and which encourages discussion about a person's "wishes" for his or her end of life decisions.

RWJF awards $297,000 grant to the Center for Applied Ethics and Professional Practice (CAEPP) at the Education Development Center (EDC) in Massachusetts, to convene the National Task Force on End-of-Life Care for Patients in Managed Care, "23 experts in health care policy, managed care, geriatrics, long-term-care, bioethics, palliative care, medicine and nursing, and hospice."  The Task Force convened in three times during 1997, and reviewed surveys from "all managed care organizations in the United States providing capitated services to Medicare enrollees."

In May, 1999, the Task Force would produce a widely publicized report, Meeting the Challenge:  Twelve Recommendations for Improving End of Life Care in Managed Care.

Steering committee: Steven Miles, Bruce Jennings, and Mildred Solomon (EDC); committee members included Ira Byock, Joanne Lynn, Kathleen Foley. 

[Next:  Meeting the Challenge  is published and five managed care firms are on board.]

On 9/24, Rep. Ralph Hall (D-TX) introduces Assisted Suicide Funding Restriction Act (HR 4149); and in the Senate,  Sen. Byron Dorgan (D-ND) introduces the same bill S. 2108; (104th Congress).  Both HR 4149 and S 2108 contained the following proviso:

SEC. 3. RULE OF CONSTRUCTION.
Nothing in this Act, or in an amendment made by this Act, shall be construed to create any limitation relating to--

1. the withholding or withdrawing of medical treatment or medical care;
2. the withholding or withdrawing of nutrition or hydration;
3. abortion; or
4. the use of an item, good, benefit, or service furnished for the purpose of alleviating pain or discomfort, even if such use may increase the risk of death, so long as such item, good, benefit, or service is not also furnished for the purpose of causing, or the purpose of assisting in causing, death, for any reason.

The bills were introduced again in the 105th Congress, this time with Ashcroft (R-MO) as co-sponsor of the Senate bill.  The bill would become law in April, 1997.

Congress of Clinical Societies: Conference on the Ethics of Managed Care (fourth in a series that began in 1987); held on October 7.

"The conference brought together leading scholars in medical ethics, health policy, law, and medicine with representatives of the managed care industry to discuss how the integrity of medical practice could be maintained and strengthened in managed care settings during a time of dramatic change in the health care delivery system." [http://www.rwjf.org/reports/grr/028153s.htm ]

Joseph J. Fins organized the conference; Speakers included Joanne Lynn and Daniel Callahan.
Hosted by American Geriatrics Society and Hastings Center.
Funding: RWJF grant #28153 for $49,000 to American Geriatrics Society.

November 23: IOM's Committee on Care at the End of Life" - Public Hearing #2, at National Academy of Sciences, Irvine, CA  (developing futility guidelines; led to publication of  "Approaching Death" in June, 1997)   Again led by Christine Cassel; panelists included:  Alicia Super, RN (Supportive Care of the Dying); Richard Della Penna,  MD (Kaiser Permanente); Betty Ferrell (City of Hope National Medical Center); Steven Miles (U. of Minn. Center for Bioethics); Susan Tolle (Oregon Health Sciences Univ.); Neil Wenger, M.D. (UCLA Medical Center Ethics Committee).

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."

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.)

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)]

Faith 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.

Finding 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."

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."

Last 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.

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).

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).

Steering 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)

RWJF 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.]

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.

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.

November: 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.

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.

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):

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.

LAST MILES OF THE WAY HOME:  A National Conference to Improve End-of-Life Care for African-Americans held in Atlanta starting February 26. This was the national conference envisioned by Marian Gray Secundy's roundtable in June, 2000.

(The opening luncheon featured a keynote address by Faith in Action spokesperson Della Reese).

Pope John Paul II addresses the International Congress on Life-Sustaining Treatments and Vegetative State, and denounces the practice of withholding hydration and nutrition (for patients whose organs have not shut down, and who can assimilate food and water):

"I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory . . .

Death by starvation or dehydration is, in fact, the only possible outcome as a result of their [nutrition and hydration] withdrawal. In this sense it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission." --Pope John Paul II, 3/20/2004

The National Consensus Project  (NCP), comprised of

• American Academy of Hospice and Palliative Medicine (AAHPM)
• Center to Advance Palliative Care (CAPC)
• Hospice and Palliative Nurses Association (HPNA)
• Last Acts Partnership
• National Hospice and Palliative Care Organization (NHPCO),

announces in a press release the publication of  Clinical Practice Guidelines for Quality Palliative Care.  These guidelines are to be the standard for palliative care services across the country.  The guidelines acknowledge:

In an effort to define palliative care, the manual provides a diagram similar to the following diagram.  The guidelines position palliative care opposite lifesaving therapy, as shown here:

The guidelines note that the population served encompasses all persons with life-threatening or debilitating illness (in other words, not only patients who are "imminently dying," or even "terminally ill.")  See for example a sample discussion of ethical guidelines for palliative care (page 36 of the Guidelines).

RWJF grants National Hospice and Palliative Care Organization (NHPCO) $2.3 million to continue Rallying Points. Kathy Brandt is named Project Director. Brandt had been Director of Operations at Hospice of Florida Suncoast. Under Karen Kaplan's direction, Rallying Points had featured three regional resource centers: Missoula; Midwest Bioethics; Hospice of the Florida Suncoast. Kathy Brandt was director of the Eastern resource center, which was Hospice of the Florida Suncoast.

Rallying Points then, and now, featured lectures from attorney William Colby, who represented the Cruzans in arguing for the removal of Nancy Cruzan's feeding tube.

A press release from NHPCO, posted simultaneously at the Rallying Points web site, suggests that the mission continued to be activism at the state and local level:

"The grant will provide support to the more than 350 community and state coalitions working to improve end-of-life care at the local level in health care systems, hospices and palliative care programs, physician offices, the workplace, faith communities, local government, and other community-based organizations. Additionally, it will provide support for consumer engagement and community outreach efforts, develop new resources, build a comprehensive consumer Web site and information center, and offer a consumer services program."

[Next: Rallying Points changes name to "Caring Connections," below.]

Rallying Points' Katherine Brandt moves from Hospice of the Florida Suncoast, to NHPCO as Vice President, Professional Leadership and Consumer and Caregiver Services.

At NHPCO, Rallying Points changes its name to Caring Connections, "a nationwide consumer outreach initiative." Caring Connections has two web sites: one for coalitions, and one for consumers that is billed as a "one-stop-shop" for EOL information. The consumer site calls on the public to "tell your story to your congressperson," and provides contact information.

[Next: Another $4.9 million to Rallying Points, dba "Caring Connections."]

NIH State-of-the-Science Conference on Improving End-of-Life Care, Dec 6-8.  The purpose is to chart the course of end-of-life research funding.  Sponsored by NINR and OMAR of NIH; co-sponsored by CDC, CMMS, NCI, NIMH, and National Institute on Aging.  Funded by AHRQ.  Preliminary studies done by RAND and its partner Veterans Administration Greater Los Angeles Healthcare System.

Participants included RWJF/PDIA project directors such as Betty Ferrell,  Joan Teno, LaVera Crawley, Sean Morrison, Charles von Gunten, James Tulsky, and Harvey Chochinov. 

The conference produced a consensus statement.  Sample quotations from the draft statement:

• "Respect for choice (patient or proxy), especially at the end of life, is a central value.  However, patient and provider expectations and/or the desire for resource-intensive therapies with a small chance of benefit may clash with societal priorities."
• "For example, in the case of dementia, providers often do not even recognize dementia as a terminal illness."
• "Encouragement to initiate advance directives (i.e., legal documents ...) alone have not been shown to improve outcomes in non-dementia patients; however, the reasons for this are not well known. Little evidence of the effect of advance directives on care of people with impaired decision-making ability was presented. Advanced-care planning—a process for preparing for the end of life, including discussion of death—is different from advanced directives and needs further study to examine its effectiveness.
• Spirituality is consistently defined as a critical domain in end-of-life care; research on interventions to improve spiritual well-being is very limited. Preliminary evidence of a specific intervention—dignity therapy—shows positive outcomes for both the patient and family in terms of satisfaction and heightened sense of dignity, purpose, meaning, and grief management."
• "Infrastructure:  Create a network of end-of-life investigators and well-defined cohorts of patients to facilitate coordinated interdisciplinary, multisite studies. This should include establishing new networks of end-of-life investigators, as well as expanding existing networks (such as the National Clinical Trials Cooperative Groups) so they have a critical mass of end-of-life investigators and appropriate study populations. These networks should enhance training of a new generation of interdisciplinary scientists (through funding mechanisms such as K-awards, T32s, and R25s)."