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)."

[back] [bibliography]

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Unpublished work © Copyright 2004-2009  I. Whitlock.