Volume 9, Issue 12

In this issue:  

Message from Amy Tucci, President and CEO

Here at HFA, we look forward to introducing some exciting new professional and consumer educational programs in 2010. Our webinar series continues with a focus on Bereavement Camps for Kids, and we will also be launching an expanded online library of information on hospice, caregiving, and grief. Of course, work continues on our annual teleconference, and we are now in the field recording the video portion of the program. I have been privileged through our recent travels to meet an outstanding group of professionals and people from various walks of life who know cancer and the toll it can take first hand; they either work with patients who have the disease, are living with it now, or cared for someone who died from cancer. They have graciously shared with us their perspectives. While those we interviewed come from different places, both figuratively and literally, for me they each exude a powerful characteristic of bravery, whether it be personal or professional. In "Focus On," we share with you, in anticipation of HFA's March 24 event, a glimpse at these poignant interviews. Teleconference attendees will see and hear their complete stories.

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Focus On: Interviews for the Teleconference

As we prepare the video portion of the upcoming Cancer and End-of-Life Care program, we've interviewed some incredible people who have shared their expertise and experience. Here are thumbnail sketches of just a few you'll get to know during the teleconference.
 
Jon Wiant took care of his wife, Cay, after a cancerous brain tumor and repeated surgeries left her partially paralyzed. Together, Jon and Cay journeyed cancer's roller coaster legacy of success and failure. They endured treatments, surgeries, remissions and regrowth of the cancer. Their lives revolved around admissions and discharges from the hospital. Doctors told them they had exhausted medicine's reach, yet didn't offer specific "what next" advice. After months of being her primary caregiver, Jon fell at home while lifting Cay and badly injured his knee. He visited his own doctor, who suggested that he and Cay consider getting help from hospice. He recalls his apprehension prior to contacting hospice, feeling that if he turned to hospice it would signal to his beloved wife that he was giving up on her. "Hospice for me was like a little cottage...where you came in and they had new age music and you sat and it was just a peaceful way to die outside of the hospital." But he and Cay decided to give hospice a try despite initial misgivings. "The most important things for me...were my ability to call at any hour of the night and get an answer...I managed here to have something that was as supportive as the team that we had in the hospital without having to go [there]."
 
Kathryn Beavers is in her early 50s and has a form of cancer that leaves her with episodes of excruciating pain. She is receiving palliative care from a palliative care consulting group owned by a hospice while she continues treatment to slow the growth of tumors. She credits the palliative care group with allowing her to continue to enjoy life and cope with the pain, and she hasn't considered using hospice. Before her medication was carefully managed by the palliative care team, she once fell face first in her driveway because of improper over-medication, badly injuring her nose and requiring corrective surgery.
 
"I'm in my third round of chemotherapy in two years time. I've had radiation twice in the last two years....  The tumors ...some of them are located in places that hurt very very much.  So I am on pain medications and I'm on other kinds of medications just to help me get through the day.  I still work; I work full time.  I don't really do much of anything else though.  Usually by the end of the day I'm wiped out."
 
Michon Lartigue moved from the East Coast to Colorado to help her 62-year-old father and family while her father undergoes treatment.  She speaks of the experience and offers some advice when it comes to incurable cancer: "It's a difficult place to exist, I think, on a long-term basis, and you sort of have to figure out ways to cope, and really be in the moment, but then also be able to move away and enjoy the time, the present sort of moment that you're experiencing.  And whether that's in the doctor's office, and -- or whether that's with family and friends, and -- or whether it's watching TV... think you just sort of have to learn how to sort of navigate each piece as best as you can."
 
Jennifer Alkhayat is a nurse practitioner with Capital Palliative Care Consultants. She works with patients with a broad range of diagnoses, but most are cancer-related. She answers the age-old question: "Can a person's pain always be managed?  Each person is different.  There's so many different factors that go into each type of pain, whether it be spiritual, psychological, or physical pain.  We use the best tools that we have available to us to make sure that...we can control people's pain the best we can, and for each person that's going to be different....A lot of times we use the 0 to 10 scale on how your pain is.  What we like to do is find out what is a level of acceptable pain for you?  Whereas your level may be 0, somebody else might -- if they can get down to a level of 5, that might be acceptable to them.  So we constantly are just trying to meet the goals of each individual patient... And manage the pain the best that we can."

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HFA's 17th Annual National Teleconference: Cancer and End-of-Life Care

Since its inception, hospice has provided highly valued and needed care for many patients and families facing terminal cancer. Malignant cancer remains the primary reason for hospice admission, accounting for 41.3 percent of all U.S. hospice patients in 2007. But as death rates from cancer decline, as new treatments emerge, and as the language around the imperative to "win the battle" over cancer becomes louder, how is the relationship between cancer and hospice changing?

The 2010 teleconference, focusing on Cancer and End-of-Life Care, will address care options as well as loss and grief reactions for patients, families and professional caregivers. The teleconference will also address psychosocial aspects of cancer, pain management, and ethical issues related to the disease. The program will include discussions of: The Transition to Palliative Care; Care of Dying Persons dealing with Cancer; Professional, Volunteer and Caregiver Needs; and the Aftermath of Cancer Death. The program will be moderated by Frank Sesno, Director of the School of Media and Public Affairs at The George Washington University, and will feature this expert panel:

  • Yvette Colón, PhD, MSW, Director of Education and Support, American Pain Foundation;
  • Malene Smith Davis, CHPN, MBA, President and CEO, Capital Hospice;
  • Kenneth J. Doka, PhD, College of New Rochelle and Senior Consultant, HFA;
  • Richard Payne, MD,  Director, Duke Institute on Care at the End of Life;
  • Sherry Schachter, PhD, FT, Director of Bereavement Services Calvary Hospital/Hospice;
  • Brad Stuart, MD, Senior Medical Director, Sutter VNA & Hospice.

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Registration Now Open for 2010 Teleconference - Check out New Registration Options!

Registration is now open for HFA's 17th annual Teleconference, Living With Grief: Cancer and End-of-Life Care, which will be broadcast live-via-webcast and satellite on Wednesday, March 24, 2010. Register online now or by mail/fax with this form.

Please note: If you have downloaded a teleconference registration form from HFA before October 30, please download HFA's current forms with updated address.
 
Register on or before December 31 and benefit from a discounted registration fee.
 
All site coordinators receive a complimentary Site Coordinator's Manual and a review copy of the 2010 Cancer and End of Life Care book written by experts. Remember to check out the new Registration Bonus Package.

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"Bereavement Camps for Kids" Webinar

Join us for HFA's upcoming Webinar, "Bereavement Camps for Kids: Benefits and Challenges" Monday, February 1 from 1-2:30pm EDT.   If you already run a camp, this webinar will reaffirm and review the most current information and best practices. If your organization is considering starting a camp, this webinar will be a great place to explore this new and viable approach to serving the bereaved youth of your community. The panel will be hosted by HFA's Senior Consultant Kenneth J. Doka and will include:  Bonnie Carroll, Executive Director of TAPS, which offers support to those suffering the loss of a military loved one; Angela Hamblen, Director of Camp Good Grief in Tennessee; Sherry R. Schachter, Director of Calvary Hospital's annual bereavement camp in New York; and Lesa Linster, National Camp Erin Project Director at The Moyer Foundation.  The panel will examine underlying theoretical models of bereavement camps, and discuss issues of funding, compliance, intake and evaluation, and staff training. Each panelist will also share her own experiences about running a bereavement camp, focusing on camp structure, which children may benefit most from the program, and successful activities.  The webinar and supporting materials will offer a toolbox of practical information and hands-on suggestions.

NEW EXPANDED REGISTRATION OPTION:  HFA is pleased to offer expanded access and usage to the program, allowing your organization to maximize the benefits of participation! The Organization Registration Fee is $100, allowing an unlimited number of viewers to attain 1.5 hours CE credit when viewed from one computer. This registration fee allows access to both the live webcast and an archived online program for one year past the live webinar, with unlimited CEs available. Individuals may register for the live webinar for $35 and 1.5 hours of CE credit is included for the registered individual. Register online now.

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What’s New @ HFA’s Hospice and Caregiving Blog

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 most recent postings:

Subscribe to the Hospice and Caregiving blog feed.

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Upcoming Conferences

The American Academy of Hospice and Palliative Medicine (AAHPM), in collaboration with the Hospice and Palliative Nurses Association (HPNA), will host its Annual Assembly, March 3-6, 2010, in Boston, MA. The AAHPM & HPNA Annual Assembly is designed for physicians, nurses, and other healthcare providers interested in acquiring, maintaining, or expanding the skills needed to care for patients with life-threatening or serious conditions. For more information visit the AAHPM Web site at www.aahpm.org.

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