Hello,

We trust that you have enjoyed the holiday season, and hope that you are looking forward to a New Year filled with good things.   ChiPPS has continued to be busy since our last newsletter, and we send this newsletter with a description of two projects – the Education Work Group for which we are seeking interested volunteers, and the “How to Start a Pediatric Palliative Care Program” manual.  The NHPCO annual Clinical Team Conference meeting is fast approaching, and once again, there will be a pre-conference on pediatric palliative care.  A description of the day is included below.  Also, the field of pediatric palliative care is developing rapidly, and so we offer an update on recent activities in that regard.  And, finally, we ask your input on format for future newsletters.

1.   Education Work Group

The goal of this workgroup is to support educational endeavors of the NHPCO office as well as new initiatives related to educating the hospice community about pediatric palliative care.   In addition to supporting conferences and workshops, this group will develop priorities surrounding the development of new training materials, evaluate the ChiPPS Education and Training Curriculum, develop curriculum for hospice pediatric palliative care medical directors, and collaborate with other providers of pediatric palliative care fellowships for all team disciplines.

If you would like to participate in this workgroup, contact Dr. Stacy Orloff via e-mail stacyorloff@thehospice.orgor phone, 727-588-2786.   

2.  NHPCO offers new educational resource in 2004

The ChiPPS executive committee will develop a new educational manual in 2004, on “How to Start a Pediatric Palliative Care Program.” We are pleased to announce author Larry Beresford, a former NHPCO editor, will be collaborating with a ChiPPS workgroup beginning the first of the year.

This endeavor is in direct response to the pediatric palliative care survey conducted by NHPCO in 2002, which received 520 responses. Only 51% of programs actually accept pediatric referrals; 57% of those accepting children, cared for less than 5 patients per year.   Fifty percent of all respondents cited lack of pediatric expertise as a major barrier to program development. Considering the lack of information, 90% requested pediatric education materials and 64% asked for written materials. ChiPPS will be taking several steps in the coming year to meet these widespread educational needs.

We don’t have a formal name for the manual as yet; however, the “How to Start a Pediatric Palliative Care Program” manual is intended to assist hospice and home care programs with development of pediatric hospice and palliative services at home. It will include all elements of program development: from developing a business plan to establishing clinical structure and program evaluation.  This manual will be valuable to both new and expanding pediatric programs for seriously ill children.

3. Essentials of Pediatric Palliative Care: Pre-conference on Pediatric Palliative Care  - March 21, 2004, Las Vegas, NV

This NHPCO pre-conference session provides an introduction to pediatric palliative care.  It will offer an account of the basic philosophy of care and principles that animate pediatric palliative care, the populations that are intended to be served by pediatric palliative care, and differences between adult and pediatric palliative/hospice care.  Case examples will introduce and illustrate discussions of such topics as pain and symptom management, decision-making, and unique aspects of bereavement in childhood.  Psychosocial and spiritual aspects of pediatric palliative care will be identified throughout.  Links will be noted between the content of this session and the new Education and Training Curriculum for Pediatric Palliative Care.  As well, sessions pertaining to pediatric palliative care form a continuous thread as an educational track throughout the entire NHPCO conference. Registration information is available at www.nhpco.org. 

4. Pediatric Palliative Care Issues Gaining Momentum

The parents of terminally ill children face agonizing decisions when they are forced to choose between curative and palliative treatments for their children.  These tough choices are necessary, says a recent editorial in the Columbus Dispatch, because private insurance companies usually follow guidelines established by the Medicare hospice benefit.  The Medicare hospice benefit will pay only for palliative, not curative, care.  When parents elect for a suffering child to receive hospice, families must often choose to forego curative treatment unless the parents pay for such treatment themselves. These children deserve, says the editorial, both the best palliative care and access to curative treatments -- as long as there is any hope for “defeating the disease.”  No parent should have to choose between providing hope and providing hospice, the article asserts, and the factthat this is not the common practice “is tragically wrong.”

Two Ohio legislators agree and have joined forces to introduce the “Compassionate Care for Children Act of 2003.”   The bill would assure that children receive both palliative and curative care.  The co-sponsors of the Senate bill, Senator Mike DeWine (Ohio) and Senator Chris Dodd (Connecticut), are supported by colleagues in the House, Representative Deborah Pryce (Ohio) and Representative John Murtha (Pennsylvania).   The bill would eliminate the six-month rule for children to receive hospice and would provide up to $35 million a year for five years to initiate a range of grants to expand pediatric palliative care services and research for seriously ill children and their families. 

The legislation addresses recommendations from the Institute of Medicine’s 2002 report, When Children Die:   Improving Palliative and End-of-Life Care for Children and Their Families.  A review of this report is included in the latest issue of NEJM.  The report details the significant shortcomings of the healthcare system in meeting the physical, emotional, and spiritual needs of children and their families throughout the course of the child's life-threatening illness.   According to the article in NEJM, the report specifically calls for public and private insurers to “restructure hospice benefits, allowing hospice teams to care for children on the basis of diagnosis rather than prognosis, even when a child is receiving potentially curative or life-prolonging therapy.”  In addition, the article states, “improving the care of dying children in this country could have a substantially positive effect on the care of dying adults.” 

NEJM also reviews a new edition of a clinical textbook for pediatric professionals, titled Pain in Infants, Children and Adolescents, written by Neil L. Schechter, Charles B. Berde, and Myron Yaster.  The book covers theoretical perspectives, treatment strategies and specific problems of children and pain and includes a strong multidisciplinary tack.  Unlike the first edition, this version includes a chapter on the issues surrounding assessing and treating pain in children with developmental disabilities.  Reinforcing the importance of incorporating the psychological management of pain, the book states, “Health professionals cannot choose to avoid using psychology to treat pain.  Our choice is whether to use psychology in a conscious, constructive fashion or to leave the psychological aspect of our intervention to chance.”  (Columbus Dispatch, 10/7; NEJM, 2003:349:1485-1486)

5. Newsletter Format

This is the fifth newsletter sent out by ChiPPS.  We are at the point of wanting some feedback from you about the format of the newsletter.  Please drop us a note by reply message or send email to ChiPPS@nhpco.orgto let us know your thoughts on the newsletter…is it of interest to you?   What kinds of items or issues would you like included in the newsletter?  We are eager to hear from you!

In closing, we wish you a happy new year, and hope that your work in the area of pediatric palliative care will continue to grow and thrive during this coming year!