Hospice Foundation of America
E-Newsletter
Volume 5, Issue 4
April 2005
http://www.hospicefoundation.org
In this issue:
- Message from David Abrams, President
- Hospice in the News
- Focus On: Ethical Dilemmas at the End of Life
- What's New@HFA
- Special Thanks
- Locate a Teleconference Site
- Site Coordinator’s Corner
Message from David Abrams, President
The case of Terri Schiavo has brought unprecedented attention to the role of hospice in end-of-life care. Many of the images and comments resulting from the Schiavo case have burned themselves into our consciousness. As we reflect on the Schiavo case, we should remember that there were 71 other individuals cared for in Woodside Hospice during this time period. The health care professionals, caregivers and volunteers of The Hospice of the Florida Suncoast stood emblematically for the dedication of hospice workers across the nation as they went about their jobs during an intensely difficult period, caring for ordinary people, showing by their actions that every life has value. Long after the nation’s attention has left Pinellas Park, hospice workers will continue providing support for Mrs. Schiavo’s family and other families whose loved ones have died, and hospice workers and volunteers all across North America will do the same. We at the Hospice Foundation of America salute your dedication and professionalism. Thank you for making us proud.
The last few weeks have brought hospice care front-and-center into the public spotlight. HFA’s mission is to advocate for hospice as an important care system at the end of life, and to this end we have developed web-based information to clarify the role that hospice has had in the Schiavo case. Among the many resources available:
A set of resources, writings, and documents that address many of the clinical and psycho-social elements of this case.
Dr. Arthur Caplan, Director of the Center for Bioethics at the University of Pennsylvania, recently wrote an article called “What Can We Learn from the Schiavo Case?” In it, he emphatically states that, “Those who suggested that any hospice would ever let a person die a miserable, painful death should simply recant. Hospice is one of the greatest institutions ever to appear in American health care. No one, whatever their motives or goals, should ever be allowed to suggest that those who provide care in hospices do so in a way that does anything other than put the control of pain and the maintenance of human dignity at the forefront.”
Jack Gordon, HFA’s Chairman, was a Florida State Senator for twenty years. He recently wrote an op-ed piece on hospice and Schiavo that was published in The Tallahassee Democrat. [Note: Mr. Gordon served as Chairman and CEO of HFA until his death in 2005.]
The Hospice of the Florida Suncoast has issued a Statement of Caring (PDF) about their experiences caring for Terri Schiavo.
All these items may also be accessed from the HFA Home Page. Hospice Foundation of America serves as the premier consumer source for end-of-life information.
Focus on: Ethical Dilemmas at the End of Life
In a foreword to HFA’s new book on “Ethical Dilemmas at the End of Life,” HFA Chairman Jack D. Gordon writes, “Death is a universal experience from which none of us is exempt. All of us will be forced to face our own and, in the course of events, the deaths of persons we are connected to in some way. When the dying person is one we cherish, we will ask--‘What is the best course for us to take? What guidance is there from our own moral compass?’” [Note: Mr. Gordon served as Chairman and CEO of HFA until his death in 2005.]
While this subject is a timely one in light of the attention surrounding the Schiavo case, health care professionals and family members struggle with these questions in hospitals, hospices, and residences every day. In collaboration with The Hastings Center, the teleconference broadcast on April 20 will feature a panel of noted ethicists, educators, gerontologists, and hospice experts who will discuss issues such as disclosure and communication, advance care planning, and artificial nutrition and hydration. The panel will also explore policy implications regarding end-of-life decision making, as well as the implications it has on grief and mourning. The program will offer constructive advice to those who are facing the difficult circumstances that surround caring for someone who is dying.
In addition to the panel discussion, the program will feature voices of those dealing with the complexities of end-of-life decision making, either personally or professionally. Katey Lawson and Annette O'Brien of the Liam Lawson Foundation discuss end-of-life care for their son and grandson, respectively, and the challenges they had negotiating the medical system as they tried to care for Liam, who was born with a severe and incurable neurological condition. Carlos Sandoval, a psychiatrist and an Episcopal priest in Miami, will address cultural diversity and issues of disclosure in end-of-life care. And Ann Jackson, Executive Director of the Oregon Hospice Association, addresses the physician-assisted suicide law in the state, the demographics of people using it, and the effect the law has had on hospice care and use in Oregon.
HFA has developed an extensive set of resources as part of our ongoing initiative on ethics at the end-of-life, including:
- Case studies and articles that help focus the discussion
- Documents dispelling myths surrounding artificial nutrition and hydration and pain
- Information on advance directives and living wills
Hospice Foundation of America recently worked with the US Department of State to provide information, support, and help with translation services after the tsunami tragedy earlier this year. In a recent letter, Catherine Barry, Deputy Assistant Secretary for Overseas Citizens Support at the United States Department of State, stated, “I am writing to express my gratitude to you for agreeing to serve as a resource for the returning tsunami victims from South Asia and for the assistance you provided family members who lost a loved one in that disaster…Not only is your program a vital resource for our agency, but your actions also exemplify your commitment to interagency cooperation. Hospice Foundation of America was available nationwide to provide support to victims and survivors in pain.”
Hospice Foundation of America extends its gratitude to Cokie Roberts for her twelve years as Moderator of our National Bereavement Teleconference. Her expertise and compassion have made her an integral part of these programs, and we applaud her role in furthering the understanding of hospice and bereavement.
We also wish to extend a special thanks to our sponsors and partners:
The Foundation for End-of-Life Care
Adventist Communication Network
Association for Death Education and Counseling
National Association of Social Workers
U.S. Department of Veteran’s Affairs
The National Catholic Ministry to the Bereaved
The Schiavo case and other typical but difficult end-of-life ethical dilemmas will be discussed during HFA's April 20th teleconference, “Ethical Dilemmas at the End of Life.” If you are an individual interested in attending the HFA annual Teleconference broadcast, you can locate a site in your area here.
Please be sure to contact the local site coordinator listed for information about attending the teleconference at his or her location. Some sites have limited space and a reservation must be made with the local site coordinator. Individual attendees do not need to register with Hospice Foundation of America. If there is no site listed in your area, check back as new sites are added regularly.
It's not too late to register your organization as a host site for the teleconference! We are still accepting on-line registrations. You will receive an e-mail confirmation with an assigned Site ID #, and a username and password to access materials from the password-protected Site Coordinator's page of the HFA website. Since you will need to download all conference materials, the $35 materials fee is waived.
In the past few weeks, HFA has received many emails regarding clarification of end-of-life situations such as artificial nutrition and hydration, as well as requests for advance directive documents. We encourage you to provide this information for your teleconference participants on the day of the broadcast. Many of these resources for general questions can be downloaded directly from our website. Also, many state Attorney General’s websites offer state-specific information.
Consider having an attorney and a notary at the broadcast, to help answer questions and to encourage participants to fill out advance directive forms on-site.
Reminder: If your site is offering CEUs through HFA, applicants must use the evaluation form provided by HFA; substitutions cannot be accepted due to strict board guidelines.
Don’t forget to download the satellite coordinates from the Site Coordinator's page.
If you have questions or concerns about your registration, please send an email to telecon@hospicefoundation.org.
This newsletter is sent to more than 6,300 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. If at any time you wish to unsubscribe, follow the instructions below. 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
Go to the E-Newsletter Archives.
