Hospice Foundation of America
E-Newsletter
Volume 5, Issue 7
July 2005
http://www.hospicefoundation.org
In this issue:
- Message from David Abrams, President
- Focus On: Ongoing Discussion on Making Decisions at End-of-Life
- FYI
- What's New@HFA
- Follow-Up: Children's Bereavement Programs
- Site Coordinator’s Corner
Message from David Abrams, President
While HFA has many projects in the works for the next few months, certain subjects require repeated and continuous discussions. HFA has an ongoing commitment to help guide families through decision-making and caregiving at the end of life. This month we FOCUS ON two very different but equally valuable perspectives in these conversations: the voice of the academic who can draw abstract truths from events and the voice of the family, who can be devastated when truth is distorted or withheld.
Note: HFA does not publish an August e-newsletter; your next regular e-news will arrive on Wednesday, September 14. Plans are underway for our 2006 teleconference, "Pain at the End of Life: Bridging the Gap Between Knowledge and Practice" and a separate e-news will be sent to our subscribers announcing the date and other information as soon as we have it, even if that is before September 14th.
Focus on: Ongoing Discussion on Making Decisions at End-of-Life
HFA was pleased to include Bruce Jennings, Senior Research Scholar at The Hastings Center, as an integral part of our recent teleconference and book on Ethical Dilemmas at the End of Life. Mr. Jennings recently wrote one of the most cogent explanations yet seen of the legal and ethical intricacies in the recent death of Terri Schiavo, and why this case serves as a profound lesson for both professionals and laypeople. We are grateful to The Hastings Center for granting permission to share it here.
The persistent misinformation that often surrounds hospice care can serve as a barrier to many families entering end-of-life decision making. "Norma’s" story is a poignant reminder of the difficulties that families face. Because of misinformation given to her by health care professionals, she and her terminally ill husband had been hesitant to explore hospice. Norma writes, "We had discussed Hospice with many people including nurses and some of the negative things we heard scared us more than anyone could know. We were left with the thought that if we chose to go with help from Hospice Fred's time would be very short."
Fortunately, her story ends better than many who will inevitably face the loss of a loved one. Hospice supported Norma and Fred until his death this spring. Her heartfelt message that she is determined to share with others is, "Do not wait until time has almost run out to ask for help from Hospice as some people do."
Hospice Foundation of America is committed to dispelling common myths about hospice and to providing education about hospice and end-of-life care. The "Myths and Facts" can be great resources for professionals and consumers.
Another resource mentioned on HFA’s recent teleconference was The Five Wishes document. Five Wishes is a legal document that helps adults of all ages plan for the care they would -- or would not -- want in case of a serious illness. Five Wishes is available through Aging With Dignity at $5 for individual copies and $1 for bulk orders of 25 or more. For orders or more information, please visit Aging with Dignity's Web site or call toll-free,1-888-5WISHES (594-7437).
The National Cancer Institute (NCI), a federal agency that is part of the National Institutes of Health (NIH), is looking for people who are interested in commenting on new educational materials about the needs of family caregivers. If you are a family caregiver or friend for a person with cancer who is in treatment, post treatment, or in an advanced stage, you would be asked to read a draft booklet, and comment on the booklet via phone for about 30 minutes. To be eligible, you should not be a health professional; all participants in an interview will be paid for their time. If you or someone you know is interested, please call 888-249-0029 by July 20.
HFA is pleased to offer The Dying Process: A Guide for Caregivers. Many of us who are caring for a terminally ill person have never done it before. The Dying Process guide (22 pages) prepares caregivers by discussing both the physical symptoms of dying and the psychological issues that accompany the dying process. The Dying Process guide can serve as a sensitive, helpful resource for families who are being served by hospice. Hospices and other end-of-life organizations can also use the guide as a helpful training aid for staff and volunteers. You can order this publication here. HFA also offers The Dying Process guide in print ($6.00 per copy). Please call 1-800-854-3402 or place your order here.
Thank you to everyone who answered HFA’s recent online survey about the 2005 teleconference. Congratulations to these Site Coordinators and participants, who were randomly selected to receive complimentary copies of HFA resources!
- John M. Cherek, The Catholic Cemeteries;
- Linda Cleek, USI Extended Services;
- Natalie Hassell;
- Rev. Andrew C. Chao Chaplain, Vitas Health Care of Texas;
- Alice T. Anderson, RN, Hi-Desert Hospice Services;
- Ted Hopkins;
- Julie Waldron, Hospice Care of Southwest Michigan;
- Maggie Campbell, Upstate New York Transplant Services, Inc.;
- Chaplain Sherman Lee Burford, Central Alabama Veterans Health Care System;
- Jill DeWitte.
The full-length version of this year's teleconference is now available on videotape and in DVD format. The 1-hour version is now available. These tapes and other resources can be ordered via our website by calling us at 800-854-3402 or online here.
Follow-Up: Children's Bereavement Programs
Thanks to those subscribers who responded to our query about children's grief camps in our June e-newsletter. The camps range from a program run by Calvary Hospital in New York, where kids plant memorial trees each summer, to a grief camp specifically for children of military families. Read all of the information we received.
Work on our 2006 teleconference, "Pain at the End of Life: Bridging the Gap Between Knowledge and Practice" is well underway. This e-newsletter will be the first place where we will announce the date, so stay tuned!
This newsletter is sent to more than 6,800 subscribers on the 2nd Wednesday of every month to keep you informed of what is happening in the fields of hospice, grief and bereavement, and caregiving, as well as what's new at HFA. We encourage you to forward this e-newsletter to an interested colleague or friend. To subscribe, go to HFA's E-Newsletter sign-up page.
Privacy Statement: In no case will we share e-mail addresses. See the full text of HFA's Privacy Policy.
This newsletter is published by Hospice Foundation of America
Jack D. Gordon, Chairman
David Abrams, President
http://www.hospicefoundation.org
Board of Directors: Thomas E. Bryant, MD, JD; Myra MacPherson; Priscilla Perry;
Patricia Spulak; Thomas Spulak
© Hospice Foundation of America 2005
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