HFA's E-Newsletter - January 2010

Volume 10, Issue 1

In this issue:  

Message from Amy Tucci, President and CEO

Almost 875,000 children and adolescents have experienced the death of a parent, and more than 1.8 million children are dealing with the loss of a sibling. Hospice Foundation of America (HFA) has focused on helping children deal with loss in past teleconferences and publications, but we find that both consumers and professionals continually need and want resources on this subject. That's why our upcoming webinar series will focus on interventions and research  to help professionals work with young people dealing with loss.  We hope you will join us for the first webinar in the series, "Bereavement Camps for Kids: Benefits and Challenges," which will take place live and online this Monday.  The webinar will include an overview of a variety of bereavement camps from experts and access to an online "toolbox" with helpful materials, including examples of daily and overnight camp schedules, camp activities and camper forms. Registration for the Feb. 1 live webinar closes at midnight EST on Thursday, Jan. 28.
 
HFA is grateful to the support of The Moyer Foundation for its sponsorship of this special series. The Moyer Foundation offers encouragement, comfort and support to children in distress; the Foundation created and funds Camp Erin, the largest network of bereavement camps in the country for children and teens who are grieving a significant loss.
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Focus On: Sharing Stories

Last month we shared with you a glimpse of some of people you'll will meet in HFA's upcoming teleconference, Cancer and End-of-Life Care. We introduce to you three more individuals this month - two professionals who encounter cancer on a daily basis, and a daughter who describes her family's experience following her mother's cancer diagnosis. Their lives and stories are extraordinary and give you an idea of the depth of this year's March 24 program. Below are excerpts from their interviews.

Shelda Smith is a medical social worker with Calvary Hospital and Hospice in Bronx, NY. She talks about the emotional components of her work.

Being hospice clinicians, [we] carry the grief of a lot of whole families on our shoulders.  And one of the most difficult things is balancing that emotional piece of working with those families with your own personal life and your own sense of well-being. The toughest cases for me have been the cases where I've met women who are about my age and have children about the age of my children.  And it certainly mirrors my own mortality.  I feel vulnerable and that's difficult.  It's often very difficult to... think you're invincible with this job.  We enter into somebody's emotional world and we come out of it feeling a lot of those emotions.  I try to put myself in a place where I do feel it, and I could empathize with it, and I don't run away from it. I think it's important even for patients to know that you're there, that you are where they are and they can sense it.  And for me, I think it's probably my best skill -- being able to be where patients are, and really letting them know that I understand what they're going through.  But then you have to find a way to come out of that house and be able to leave that behind.

Jennifer Alkhayat is a nurse practitioner with Capital Palliative Care Consultants, which is based  in Northern Virginia and affiliated with Capital Hospice.

Capital Hospice had a great medical team and realized that there was a huge part of the population that was not being able to benefit from the hospice services, but could still benefit from the knowledge and education that all of our medical professionals had. So we thought it would be a good idea to get out and into the community, and be able to offer these services to those who were not quite ready for hospice yet. The types of patients that we see are generally patients with life-limiting illness, who have symptoms that may be out of control while they are pursuing other types of aggressive treatments, whether that be chemotherapy, dialysis, any of those things. When you have a disease like this, they usually go hand in hand with symptoms -- you're usually not well-managed at that point, because a lot of times people think that this is part of the illness, and they need to go through that part.  What we try to do is educate them, let them know that they don't have to suffer, that they can continue to get the treatment that they want to pursue, but at the same time have the quality of life that they would like to live. The type of symptoms that Capital Palliative Care assists in managing are pain, shortness of breath, fatigue, anxiety, constipation, diarrhea, any -- any adverse effects that you may be getting from aggressive treatment or from the disease itself.
 
The special role that we have is, especially when Capital Palliative Care gets involved early in someone's cancer diagnosis, is being able to take that journey with them, to make sure that they are comfortable, to make sure that they have the energy, to make sure that they have the support to continue with these treatments that can be quite burdensome to many people. Many people really hold on to these treatments as kind of their lifeline, and don't want to let go.

Sherry Meyers of Great Falls, VA, is one of three siblings and talks about her mother's cancer diagnosis and her family's experience with hospice care.

We learned about mom having lung cancer five years ago, so that would be 2005.  It was St. Patrick's Day. It was very unexpected, although she was a smoker for a number of years.  We weren't shocked that she had lung cancer, but were surprised that it had taken so long to catch up to her.  So we were advised by her general practitioner to see a series of oncologists and to bring in hospice right away because she was 83 at the time.  So we had no idea how long she would live or how far it had progressed.  I am the youngest of three children, but I am kind of the main caregiver of my family, and so I was the one that had to contact the hospice and brought them in soon after she was diagnosed.

[Mom] was very apprehensive about it at the beginning because she thought if I have hospice, then I'm going to die tomorrow, which was what a lot of my brother was focusing on.  She eventually came to accept it and she lived for a year and a half with the lung cancer, so we were involved with hospice for a year and a half. [Hospice] was absolutely incredible.  We had a very good experience with them.  When they first came with us, the hospice nurse and social worker took us through all that they would be doing.  My sister was very for it.  My brother, as I said, was a little apprehensive in the beginning, just because he thought it was too soon to bring hospice in.  He realized shortly thereafter that it was a great decision because they brought a calming influence to a very difficult situation.

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Webinar Series on Grieving Children and Adolescents

HFA's upcoming webinars will discuss research and interventions to help young people dealing with these losses, as well as the myriad of other losses they may experience. HFA's live online webinar series includes:

Bereavement Camps for Kids: Benefits and Challenges on Monday, February 1. Panelists will include: Sherry Schachter, Director of Calvary Hospital's annual bereavement camp in New York; Angela Hamblen, Director of Camp Good Grief in Tennessee; Bonnie Carroll, Executive Director of TAPS, which offers support to those suffering the loss of a military loved one; and Lesa Linster, National Camp Erin Project Director at The Moyer Foundation.

Bereaved Children and Adolescents: Lessons from Research on Wednesday, April 14. Panelists will include J. William Worden, a co-principal investigator for the Harvard Child Bereavement Study and Irwin N. Sandler, Regent's Professor of Psychology, Arizona State University.

Grieving Children and Adolescents: The Role of Internet Support on Tuesday, June 15. Panelists will include Pamela Gabbay of the Mourning Star Center and National Alliance of Grieving Children and Carla Sofka, associate professor of social work at Siena College in New York, who has written extensively on grieving youth and technology (note: The live webinars will take place from 1pm-2:30pm ET.)

Register for the series here. The Organization Registration Fee for the three-part series is $250, which allows access to both the live webcast and an archived online program for one year past the live webinar, with unlimited complimentary CEs (1.5 hours) available for a wide range of professions. If purchased separately, the Organization Fee is $100 per program. Individuals may register for each webinar for $35 and 1.5 hours of CE credit is included for the registered individual. To learn more about this exciting educational offering, contact HFA at 800-854-3402 or see the website.

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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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Register for the 2010 Teleconference - New Registration Options Available!

Registration is 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.
 
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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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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