HFA's E-Newsletter - July/August 2010
Volume 10, Issue 7/8
In this issue:
- Message from Amy Tucci, President and CEO
- Focus on: Hospice and Palliative Care in the News
- Panel for 2011 Educational Program Announced
- The Hospice Information Center
- What's New @ HFA's Hospice and Caregiving Blog
- Upcoming Conferences and Educational Opportunities
While August is a fairly quiet month in Washington, here at HFA we've gotten a jump on our schedule. We've been developing programming and have even been on the road working on our 2011 Living with Grief® program, Spirituality and End-of-Life Care, which will be released on DVD on April 13, 2011.
Our first stop was to visit again with Tom O'Brien, who appeared on our 2010 program, Cancer and End-of-Life Care. Tom has incurable esophageal cancer. He opted for palliative care and no treatment for his cancer in late 2009 when physicians were unable to give him assurance that aggressive treatment would extend or improve his life. Tom has since transitioned from Capital Palliative Care to Capital Hospice care and is doing well. We interviewed him at his apartment in Reston, Va., to talk about his spirituality and how it intersects with his Catholic heritage as he approaches death. Tom has his good days and bad days, he told us, but he is pleased with the decisions he has made about his care. He has also been drawn back to Catholicism and has reconnected with his parish priest after a long absence from organized religion. Spiritually, he is perhaps stronger than ever and finds great comfort in his faith.
I thought of Tom when a new study came out about palliative care extending the lives of lung cancer patients (see study synopsis below). I couldn't help wonder if palliative care had done the same for Tom, who made the decision to forego treatment shortly after diagnosis. Similar studies have indicated that hospice care can also extend life. And, perhaps Tom's strong spirituality has buoyed his resilience, allowing him time to reflect on his remarkable life. While he lives with advanced illness, Tom has been able to pursue spiritual questions and benefit from his connection to his faith again.
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A recent study in The New England Journal of Medicine has shown that end-of-life care treatment can make a tremendous difference in a patient's quality of life. A study of 151 patients with advanced lung cancer was divided in to two groups; one group began receiving palliative care immediately upon diagnosis, the other did not, and the differences in their outcomes were striking. Patients receiving palliative care reported less pain, less depression, and more mobility. Although the palliative care patients frequently requested fewer aggressive treatments, they also lived nearly three months longer than patients receiving standard treatments.
The study has received a great deal of media attention--The New York Times, Associated Press, USA Today, The Wall Street Journal, Boston Globe, have written articles about the study. Many health related blogs, such as Pallimed, GeriPal, Dr. Len's Cancer blog (American Cancer Society), and New Health Dialogue are posting about what this study means to the field of palliative care. The study was the topic of on The Diane Rehm Show on NPR, and included guests Dr. Diane Meier, Director of the Center to Advance Palliative Care and Dr. Atul Gawande, a staff member of Brigham and Women's Hospital, the Dana Farber Cancer Institute, and the New Yorker magazine. Dr. Gawande wrote a powerful piece about physicians and end-of-life decision making in a recent issue of the New Yorker.
This recent study is not the first to show a longevity benefit with hospice and palliative care. In 2007, a study of nearly 4,500 deceased Medicare beneficiaries showed that patients with common life-limiting conditions lived 29 days longer, on average, when they received hospice care.
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HFA's 2011 program on Spirituality and End-of-Life Care features a panel that will bring myriad perspectives to the subject of spirituality and the experience of living with advanced and terminal illness. At a July planning meeting in Washington, DC, panelists exchanged best and innovative practices. They also shared their perspectives on how spirituality and religion are distinct, while concurring that a person's spirituality is often defined by religious beliefs. Panelists on the 2011 Spirituality and End-of-Life Care program will include:
- Kenneth J. Doka, PhD, MDiv, Professor of Gerontology at The College of New Rochelle
- Gary S. Fink, DMin, Chaplain and Dementia Project Coordinator at Montgomery Hospice, and Adjunct Faculty at Hood College Graduate School
- Carolyn Jacobs, PhD, MSW, Dean and Elizabeth Marting Treuhaft Professor at Smith College, School for Social Work
- Betty Kramer, PhD, MSSW, Professor at the University of Wisconsin-Madison, School of Social Work
- Reinette Powers Murray, MSN, CNS, RN, Consultant, for The Peaceful Journey-End-of-Life Process programcertified as a Train-the-Trainer for End-of-Life Nursing Education (ELNEC)
- Martha Rutland, DMin, BCC, ACPE, Director of Clinical Pastoral Education at VITAS Innovative Hospice Care
Stay tuned for details about early registration, which is expected to open in mid-September 2010.
Hospice Foundation of America's new Hospice Information Center offers a range of online resources for families, friends and professionals. This centralized resource is funded by the Centers for Medicare & Medicaid Services (CMS) and can be found on HFA's website at http://www.hospicefoundation.org/infocenter.
The Hospice Information Center provides information about hospice care and other aspects of end of life, such as caregiving, grief, and palliative care. The online resource area offers opportunities to:
- Listen to the Voices of people who have experienced hospice, who work in hospice, and other experts who work in the area of grief and bereavement.
- Educate Yourself and Others about the basics of hospice care, grief, and caregiving. Online presentations are available to access information in a convenient, user-friendly format; free CEs are available for some programs.
- Read and Share Resources on end-of-life care, hospice, and grief and bereavement. HFA has developed one-page Fact Sheets on many topics. Print resources are also available in Spanish, and materials in Chinese and Vietnamese will be available soon.
- Ask HFA questions about hospice care, caregiving, and grief.
The resources in the Hospice Information Center make it easier for family and friends to learn about hospice and how it can help people cope with some of life's most challenging situations, in a format that is accessible and understandable. The programming also provides hospices and other community organizations the opportunity to educate staff and volunteers about the basics of hospice care, caregiving, and grief. Brochures are available to download and share, and links are provided to guide viewers to more information on a variety of subjects.
HFA's Hospice and Caregiving Blog gathers and disseminates information useful to professionals and consumers from a single destination. Our goals are to inform, offer support, and generate online comments about important end-of life issues. Read some of the blog's recent postings:
- Focus on Bereavement Camps for Children and Adolescents
- Eldercare Notes - August 2010
- Teen Writes Book to Help Other with Grief
- Ethics and Empathy in Medical School
The American Foundation for Suicide Prevention (AFSP) will host its 12th Annual National Survivors of Suicide Day on Saturday, November 20. Individuals, organizations, agencies, or schools can offer this program by organizing a local conference site. AFSP provides a 90-minute bilingual (English/Spanish) educational and healing broadcast via DVD or webcast for free. This is an opportunity to offer a high-quality program directly to community members at little or no cost. Learn how at www.afsp.org/survivorconference or email email@example.com.
The Art of Dying IV - Living, Dying and Being In Between brings doctors, nurses, therapists, hospice workers, and bereavement counselors together with spiritual teachers. Presenters include Marianne Williamson, author of the bestselling A Return to Love; Frank Ostaseski, co-founder of the first Buddhist hospice in America, and Robert A.F. Thurman, PhD, professor of Indo-Tibetan Studies at Columbia University. The conference will be held October 1-3, 2010 at the Menla Mountain Retreat Center in Phoenicia, NY. Learn more at www.artofdying.org.
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