Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

A. WEBSITES RELATED TO THIS ISSUE'S CONTRIBUTORS:

American Hospital Association Circle of Life Award
http://www.aha.org/circleoflife/
The American Hospital Association's (AHA) Circle of Life Award, Celebrating Innovation in End-of-Life Care, is presented annually to recognize innovation to improve the care provided to dying people and those around them. The Circle of Life Award, which is given to up to three programs, provides a $25,000 award to further the work of the organization. The goals of this award are to help change the professional attitudes and culture that often equate death with a failure of science and to encourage a feeling of professional satisfaction based on easing dying. The Balm of Gilead received a Citation of Honor from the AHA in 2001.

Association for Death Education and Counseling
http://www.adec.org
Founded in 1976, the Association for Death Education and Counseling (ADEC) is a multidisciplinary organization dedicated to improving the quality of death education, counseling and caregiving; to promoting research; and to providing support, stimulation and encouragement to its members and those studying and working in death-related fields. Dr. Ronald Barrett, whose international perspective is included in this issue, founded the ADEC People of Color Forum.

The Balm of Gilead Center
http://www.gileadcenter.com/
Birmingham, Alabama's Cooper Green Hospital has established a comprehensive palliative care program, including its own 10-bed inpatient palliative care unit called the Balm of Gilead (named after a Gospel song about a healing salve). Seventy percent of patients served are African American. The project is nurtured by generous support from the city's churches and business community as well as through funding from The Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care program. In addition, the Balm of Gilead provides training for medical residents, interns, and medical students on rotation. Staff members from the Balm also conducts monthly in-service training for students at the University of Alabama at Birmingham and in area nursing homes.

Harlem Palliative Care Network
http://www.vnsny.org/mh_hpcn.html
The Harlem Palliative Care Network (HPCN) is a large network of Harlem doctors, pharmacies, churches, and community organizations, focused on helping the people of their neighborhood who are facing life-threatening illnesses to get the services and support they need. Developed and operated by North General Hospital, Memorial Sloan-Kettering Cancer Center and the Visiting Nurse Service of New York, HPCN aims to take care of the whole person, including physical, emotional, and spiritual needs.

Initiative to Improve Palliative Care for African-Americans (IIPCA)
http://www.iipca.org
Founded by Dr. Richard Payne, Dr. LaVera Crawley serves as executive director and Terrie Reid Payne serves as deputy director. IIPCA promotes a research, education and policy agenda to improve care for African American patients facing serious illness. The website and organization are supported by the Open Society Institute and the Project on Death in America. See the Activities page for a list of recent publications and presentations.

Memorial Sloan-Kettering Cancer Center
http://www.mskcc.org/
Memorial Sloan-Kettering is the world's oldest and largest private institution devoted to the prevention, treatment, and cure of cancer. Dr. Richard Payne, one of the featured innovators in this issue, leads the facility's Pain and Palliative Care Services in the Department of Neurology. Memorial Sloan-Kettering has partnered with North General Hospital and the Visiting Nurse Service of New York, to establish and operate the Harlem Palliative Care Network.

Project on Death in America
http://www.soros.org/death
Sponsored by the Soros Foundation, the mission of the Project on Death in America (PDIA) is to understand and transform the culture and experience of dying and bereavement through initiatives in research, scholarship, the humanities, and the arts, and to foster innovations in the provision of care, public education, professional education, and public policy. North General Hospital, a community hospital in Harlem, is a key collaborator and home to the Harlem Palliative Care Network. North General is one of several PDIA grant recipients listed at http://www.soros.org/death/allgrants_7.htm. In addition, PDIA published an issue of its newsletter on Improving Palliative Care in a Multicultural Society that can be found at http://www.soros.org/death/news6.htm.

Promoting Excellence in End-of-Life Care
http://www.promotingexcellence.org/
Promoting Excellence in End-of-Life Care is a National Program Office of The Robert Wood Johnson Foundation with direction and technical assistance provided by the Practical Ethics Center at the University of Montana. The program currently funds 22 projects to improve palliative care in different parts of the United States, including The Balm of Gilead Center.

Stanford University Center for Biomedical Ethics
Stanford School of Medicine
http://scbe.stanford.edu
The Stanford Center for Biomedical Ethics (SCBE) is an independent, interdisciplinary organization that addresses complex ethical, social, and legal issues in biomedicine and medical technology through research, education, clinical consultation, community outreach, and collaboration and cooperation with industry. The Center is within the Stanford School of Medicine.

Visiting Nurse Service of New York
http://www.vnsny.org/
For over a century, the Visiting Nurse Service (VNS) of New York has been providing home health care. VNS has the capabilities and resources to deliver the entire range of home health care services throughout all five boroughs of New York City and in Nassau County on Long Island. Among those services is the Harlem Palliative Care Network, a collaborative project established and in operation with Memorial Sloan-Kettering, North General Hospital, and VNS.

United Hospital Fund
http://www.uhfnyc.org/
The United Hospital Fund (UHF), founded in 1879, is a health services research and philanthropic organization that addresses critical issues affecting hospitals and health care in New York City. It is the oldest federated charity in the United States. UHF's Palliative Care Initiative funds the Harlem Palliative Care Network, the Featured Innovation in this issue. Other grant recipients for this initiative are listed at http://www.uhfnyc.org/grants/pci/pci.html.

B. OTHER RELEVANT WEBSITES:

Americans for Better Care of the Dying
http://www.abcd-caring.org
Americans for Better Care of the Dying (ABCD) is dedicated to ensuring that all Americans can count on good end-of-life care. Its goals are to build momentum for reform, explore new methods and systems for delivering care, and shape public policy through evidence-based understanding. The site also provides action guides to assist clinicians, benefits managers and purchasers, citizens, and policymakers.

The Care Team Network
http://www.careteam.org
The mission of the Care Team Network (CTN) is to be a training and resource center for the development of volunteer Care Teams for persons with health concerns or other special needs. CTN is associated with the University of Alabama at Birmingham's 1917 Clinic at the University's School of Medicine. Readers will find stories from the Balm of Gilead, as well as a full description of the Care Team Model, on this website.

Duke Institute on Care at the End of Life
http://www.iceol.duke.edu/
The Duke Institute on Care at the End of Life seeks to improve care at the end of life through interdisciplinary scholarship, teaching, and outreach. Based at the Divinity School, the Institute's focus and efforts reflect the contributions of scholars and students from Duke University and partnering institutions. In May 2001, the Institute held its second annual symposium, Crossing Over Jordan: African Americans and Care at the End of Life. Karla F.C. Holloway spoke on the experiences of death and dying in the African-American culture. Featured Innovator in this issue, Dr. Richard Payne, spoke on the subject of how African Americans view palliative care. Details are available on the site's Current News section at http://www.iceol.duke.edu/news/index.pl.

Mount Sinai School of Medicine
http://fusion.mssm.edu/story/content.cfm?storynum=138
An April 5, 2000 press release states that Mount Sinai School of Medicine researchers revealed that patients living in minority neighborhoods often cannot obtain prescribed pain medications at their neighborhood pharmacies. These findings are based on a study conducted in New York City and are detailed in the April 6, 2000 issue of the New England Journal of Medicine.

National Medical Association
http://www.natmed.org
The National Medical Association promotes the collective interests of physicians and patients of African descent. This US-based professional and scientific organization of physicians is committed to: 1) preventing the diseases, disabilities, and adverse health conditions that disproportionately or differentially impact persons of African descent and underserved populations; 2) supporting efforts that improve the quality and availability of health care to underserved populations; and 3) increasing the representation, preservation and contribution(s) of persons of African descent in medicine.

Praxis Post
http://praxis.md/post
Praxis Post is the webzine that bridges medicine and culture, featuring leading doctors and journalists on the practice and culture of medicine. Go to http://praxis.md/post/friendlyfire for a lively viewpoint piece that includes thoughts from Dr. Richard Payne on race and gender in health care.

Tuskegee University National Center for Bioethics in Research
and Health Care
http://www.tubioethics.org
The Tuskegee University National Center for Bioethics in Research and Health Care (TUNCBRHC) was established in January 1999. The Bioethics Center was developed as a partial response to the apology of President Clinton for the United States Public Health Service Study on Syphilis conducted at Tuskegee, in Macon County, Alabama from 1932 to 1972. The negative legacy of this study has been cited as hindrance to the full participation of African American and others in medical care and scientific research. The TUNCBRHC works with the local, regional, national, and international communities in areas addressing ethical and human values issues in science, technology, and health as they impact people of color.

US Department of Health and Human Services
"The Initiative to Eliminate Racial and Ethnic Disparities in Health"
http://www.raceandhealth.omhrc.gov/index.htm
In 1998, President Clinton announced his commitment to eliminating racial disparities in health care by 2010. This goal is a major component of the President's Initiative on Race at http://clinton3.nara.gov/Initiatives/OneAmerica/america.html and it parallels the focus of Healthy People 2010 at http://web.health.gov/healthypeople, America's health objectives for the 21^st century, introduced by President Clinton in 2000. The US Department of Health and Human Services is working closely with representatives of minority communities and members of Congress to meet President Clinton's goal for 2010.