Intro 1963-88 1989-96 1997-2003 2004 - Bibliography To search within the timeline, or to print all 28+ pages, click here
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Euthanasia Timeline
2004 Jan

Last Acts Partnership is awarded $2.25 million from RWJF as technical assistance for the Last Acts program (4/2004-3/2007).  On 1/7/04, Karen Kaplan and Tom Koutsoumpas, Jr. (VITAS Healthcare; Partnership for Caring) host an event at the National Press Club to announce the launch of Last Acts Partnership.

Under the new name, the group emphasized lobbying efforts for national and state legislation.  As of July, 2004, they were encouraging their members to work for passage of the following bills:


  • S. 1629 - Children's Compassionate Care Act    (sponsors)
  • S. 538 - Lifespan Respite Care Act (sponsors) introduced by Hillary Clinton (D-NY); passed; now goes to HR 1083
  • H.R. 3127 - Pediatric Palliative Care Act     (sponsors)
  • H.R. 2883 - Living Well with Fatal Chronic Illness Act     (sponsors)
  • H.R. 1863 - National Pain Care Policy Act    (sponsors)
  • H.R. 1083 - Lifespan Respite Care Act     (sponsors)
  • S. 2545 - Advance Directives Improvement and Education Act of 2004 (S. 2545)  (sponsors) Introduced by Senators Rockefeller and Nelson.
  • S.RES. 391 - S. Resolution 391, which would designate the second week of December as Conversations Before the Crisis Week    Introduced by Sen. Nelson

By the end of 2004, Karen Orloff Kaplan would leave Last Acts Partnership to join Wye River Group on Healthcare. Finally, Last Acts Partnership closed, but one of its projects moved to a new location.

[Next: September, 2004, Rallying Points continues at NHPCO]

2004 Feb

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).

2004 Feb Richard Payne, MD, is named director of Duke University's Institute on Care at the End of Life (Durham, NC).  Duke Divinity School's dean said Dr. Payne "will continue the institute's focus on faith communities and on diverse populations, especially African-Americans, while also extending its reach in teaching, research and outreach."
2004 Mar

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

2004 Apr

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:

Funding from:   Supported by:

  • American Academy of Hospice and Palliative Medicine
  • Arthur Vining Davis
  • Center to Advance Palliative Care
  • The Charitable Leadership Foundation
  • Hospice of the Western Reserve
  • Hospice and Palliative Care Nurses Association
  • Last Acts Partnership
  • Mayday Fund
  • National Hospice and Palliative Care Organization
  • Purdue Pharma Fund
  • The Robert Wood Johnson Foundation
  • Beth Israel Medical Center, New York, NY
  • City of Hope National Medical Center
  • Harvard Medical School Center for Palliative Care
  • The Hospice of the Florida Suncoast
  • Massachusetts General Hospital
  • Hertzberg Palliative Care Institute, Mount Sinai School of Medicine
  • National Hospice Work Group
  • National Institutes of Health, Warren Grant Magnuson Clinical Center
  • New York University, Steinhardt School of Education, Division of Nursing
  • Palliative Care Center and Hospice of the North Shore
  • San Diego Hospice and Palliative Care
  • University of Pittsburgh School of Medicine
  • Vitas HealthCare

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:

palliative care vs life-saving therapy

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).

2004 Jun End of Life Choices and Compassion in Dying begin merger to form Compassion & Choices.
2004 Sep

Public EngagementRWJF 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.]

2004 Nov

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."]

2004 Dec

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)."
2005 July Caring Connections (formerly Rallying Points) receives $4.9 million from Robert Wood Johnson Foundation (9/2005 - 8/2007). Project Director is Kathy Brandt.

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Updated on September 22, 2009 7:17
Unpublished work © Copyright 2004-2009  I. Whitlock.