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March 2006

NHPCO ChiPPS Pediatric Palliative Care Newsletter March 2006

Welcome by Charles Corr (charlescorr@mindspring.com) and Christy Torkildson (ctorkildson@georgemark.org)

Welcome to the fourth issue of our ChiPPS electronic newsletter!  This newsletter is a project of the Education Work Group of ChiPPS, the Children's Project on Pediatric Palliative/Hospice Services of the National Hospice and Palliative Care Organization.


Children's Project on Palliative and Hospice Services: An Update Susan Huff  hawkhuff@msn.com Stacy Orloff  stacyorloff@thehospice.org

The Children's Project on Palliative and Hospice Services (ChiPPS) is the Pediatric Leadership Council of the National Hospice and Palliative Care Organization.  In 1998, an interdisciplinary group of pediatric hospice and palliative care professionals met in DallasTexas.  This meeting was the “birth” of ChiPPS.  The goals of ChiPPS include supporting education, improving quality, and increasing access to pediatric hospice and palliative care.

The current leadership council is composed of 13 professionals representing Canada and the United States.   Members include:

Co–chairpersons: Stacy Orloff and Susan Huff Chuck Corr Mary Jo Gilmer Nancy Hutton Peter Lund Stacy Remke Maria Ruggs Barbara Sourkes David Steinhorn Suzanne Toce And ex officio members: Marcia Lattanzi-Licht and Stephen Connor.

In addition to sponsoring this newsletter ChiPPS has completed several other projects.  If you would like more information regarding ChiPPS please contact either Susan Huff athawkhuff@msn.com or Stacy Orloff atstacyorloff@thehospice.org.

We would like to share one very timely and exciting project ChiPPS is involved with.  NHPCO is a proud partner with ITVS, providing guidance and support, including information regarding end-of-life care to the Lion in the House Project.  Lion in the House is an independent film, coming to Independent Lens on PBS channels June 21 and 22, 2006.  Lion in the House offers an unprecedented look at the cancer journeys of five young people and their families over a six-year period.  Award-winning filmmakers Steven Bognar and Julia Reichert bring audiences face to face with the uncertainty of the entire cancer experience and its rippling effects on family, community, and professional caregivers.  Many pediatric hospice and palliative care providers are already developing local activities in their communities to supplement this two-day television event.  We encourage all providers to consider offering outreach events leading up to and including the broadcast dates.  For more information see www.itvs.org/outreach/lioninthehouse.

Members of this Education Work Group owe a huge debt of gratitude to Stacy Orloff for her many efforts in guiding our efforts during our first year and for inaugurating this newsletter in such fine fashion.  In addition to continuing as Co-Chair of the ChiPPS Leadership Advisory Council, we are delighted that Stacy will continue as a member of the Work Group.

We also want to thank you, the readers of this newsletter, for supporting the ChiPPS PPC newsletter and hope that you are finding it useful.  We are especially grateful to everyone who has taken the time to offer feedback, support, and suggestions regarding this newsletter.  One of our primary goals is that you, the reader, will offer ideas and suggestions regarding themes and content of this newsletter—both current and future.  What ideas do you have us to work on?  Send an e-mail to Christy (ctorkildson@georgemark.org) or Chuck (charlescorr@mindspring.com).  We especially want to publicize conferences and other resources that you are aware of.  Please send that information to Sandy Macomber (smacomber@tidewell.org).  In that connection, please note that many activities related to pediatric palliative and hospice care will be included in the forthcoming 7th Clinical Team Conference and Scientific Symposium of the National Hospice and Palliative Care Organization to be held in San Diego, California on April 26-28, 2006 (see the notice of this conference in Sandy's section on Educational Opportunities and Resources later in this newsletter).

The overall theme of this issue of the newsletter is self care for all who work in pediatric palliative care.  That includes caring for oneself and caring for others, caring for individuals and caring for the team.

Here is a brief Table of Contents highlighting each section of this newsletter in the order in which those sections appear.  You will notice that each of these sections has a contact name and e-mail address attached to it.  We provide these contact names and e-mail addresses in order that you can get in touch with the section's author(s) to seek ideas or exchange information.

Stress Management in Pediatric Palliative and Hospice Care Dale Larson DLarson@scu.edu As in previous issues of this newsletter, we have selected a theme around which to organize the contents of this issue.  In this case, our theme is self care—for oneself and for others, for individuals and for the team.  To address this theme, we are delighted that Dale Larson, Ph.D., of Santa ClaraUniversity agreed to contribute the keynote piece.  Dale is well known to everyone who works in palliative and hospice care, and his book, The Helper's Journey: Working with People Facing Grief, Loss, and Life-threatening Illness (Champaign, IL: Research Press, 1993) is an excellent resource on this subject, one that is well worth reading by all hospice and palliative care workers.  Dale's article identifies some of the distinctive stressors in pediatric palliative and hospice care, and then suggests strategies for stress management and self-care at both the individual and team levels.

Frequently Asked Questions: How Do We Support Ourselves? Donna Armstrong darmstrong@hospicebg.com In this section, Donna poses questions that often arise for care providers who work in pediatric palliative and hospice care, and offers answers taken from a survey of team members.  Here, the questions and answers address: sources of stress unique to those working in pediatric palliative care; meaningful aspects of this work; how individuals are affected by their work and how they cope with repeated losses; whether or not it is appropriate to share one's feelings with patients and families; whether awareness of the crises and tragedies that present themselves in this work is or is not a burden; what agencies do to support team members; and what individuals do to take care of themselves.  Be sure to send any questions that you would like addressed in future newsletters to Donna.

Stress in Pediatric Palliative and Hospice Care: Causes, Effects, and Coping Strategies Karen Paradise Baranowski karen.baranowski@intermountainmail.org Karen's contribution to this issue of the newsletter is a detailed review of some of the specific causes of stress when caring for children with life-limiting illnesses, the effects stress has on care providers, and ways to cope with such stress as individuals, teams, and organizations.  Four tables in this section identify key elements involved in each of these topics.  The closing sentences of this section draw attention to its major lessons: “Clinicians can best cope with the stresses of providing end-of-life care by: (1) learning what causes them stress; (2) learning how to recognize the effects of stress; and (3) developing coping skills and self-care techniques to conquer the stresses they encounter.  The responsibility of coping with work stress lies both on the individual and on the organization that provides care to dying children.”

Unique Programs and Projects for Staff Support and Care Kate Eastman programdirector@jasonprogram.org Alan Johnson Johnson.alan@tchden.org In this article, Kate and Alan report the results of their survey of PPC team members from across the country about staff support and care.  Their goal is to highlight good work that is already being done in this area, as well as to encourage others to draw upon the ideas offered by their respondents.  Respondents provide comments about: shared concerns, themes, and approaches to staff support; regular, structured programs; singular and/or sporadic activities; obstacles; and what is most needed.  Perhaps the key lessons that emerge from this section appear in its closing lines: “Support doesn't happen if no one notices that someone is having a difficult time.  Being attentive to one another is the first step in offering support.”  Kate and Alan include contact information for their respondents so that readers of this newsletter can be in touch with them directly if they wish to do so.  Please send to Kate and Alan information about unique programs and projects that you are aware of in any area of PPC and we'll do our best to include that information in a future newsletter.

Humor as Part of Self Care in Pediatric Palliative and Hospice Care Stacy Orloff programdirector@jasonprogram.org As a contribution to self care, Stacy shares with us in this section some favorite cartoons that may help to lighten our days when we are involved in the often-difficult and challenging work of pediatric palliative care.

Educational Opportunities and Resources Sandy Macomber smacomber@tidewell.org This section describes upcoming conferences, some books and articles, a website, and a new tool called “Come to Your Senses.”  Sandy's goal in compiling this section is to make readers aware of educational opportunities and resources that might be of value in their work.  As we all know, it can be difficult to obtain information about such opportunities and resources, so we invite you to submit to Sandy any information of this type that you would like to share with other readers.  Please help us help each other—a fine example of self care and staff support

If you are not on our mailing list and received this newsletter from a friend or some other source, please send an email message to CHIPPS2@NHPCO.org  requesting to be added to our mailing list.

We hope you have enjoyed reading this newsletter as much as we enjoyed putting it together!  Thank you for taking time to read this issue of our newsletter and for any feedback that you can offer us.  Providing pediatric palliative and hospice care to children, adolescents, and their family members has made great strides in recent years, even though it is certainly not always easy and still faces many challenges and obstacles.  Perhaps we can minimize or at least reduce some of those challenges and obstacles through caring for ourselves and others in constructive ways.  We wish you all the best in your good work.  Look for the next issue of this newsletter in late summer.