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ChiPPS Newsletter December 2002

Pediatric and Palliative Care Newsletter A service through the ChiPPS Project December 2002


Some of you know about ChiPPS through your involvement in the work projects that we have accomplished. Others of you attended the pre-conference workshop at the NHPCO meeting in Florida a couple of years ago. Still others may have just heard about ChiPPS and wondered what it is all about.  This newsletter is an attempt to tell you about ChiPPS and to create a link among people with mutual interests in pediatric hospice and palliative care. This is the first issue of a regular communication to share information about recent developments, programs, activities, and events pertaining to palliative and hospice care for children.  This first issue reviews the history and accomplishments of ChiPPS and outlines current activities.   What ChiPPS is

ChiPPS was developed by several leaders in the field of pediatric palliative care working collaboratively with the National Hospice Organization. When first formed, ChiPPS stood for the Children%27s International Project on Palliative/Hospice Services.  The original goal of ChiPPS remains its primary goal: to make the best practices in the field of pediatric palliative and hospice care more widely available to care providers.  In addition, ChiPPS also is committed to identifying areas where further investigation is warranted to promote more responsive end-of-life care for children and their families. 

History of ChiPPS

In 1995, several practitioners in pediatric palliative and hospice care discussed some of the challenges they faced in their work. Specifically, they felt a need to overcome the relative isolation involved in pediatric hospice and palliative care.  Moreover, at the time, the wider medical community had not adopted much of what was known by experienced clinicians because of limited research.  While some practitioners had been innovatively developing and perfecting aspects of care through experience, many lacked the resources to offer optimal care and services.  In addition, there was limited communication among those caring for children with life-limiting conditions.  The group identified a need to disseminate current information about the care of children with life-limiting conditions in order to optimize the provision of comprehensive services that families need. 

The steering committee consisted of Marcia Levetown, MD (USA), Betty Davies, RN, PhD (Canada), Kate Faulkner, MD (USA), later replaced by Jeanne Lewandowski, MD, Ann Goldman, MB, FRCP (UK), and Stephen Liben, MD (Canada), and later joined by Danai Papadatou, PhD (Greece).  The group%27s first goal was to bring together a multidisciplinary, multinational group that would work to move forward the field of pediatric palliative and hospice care.  In addition to ongoing communication about shared concerns, the steering committee envisioned the creation of comprehensive practical resources for the care of children with life-limiting conditions and their families.  Those materials, which would be based upon those already developed, would be made available for immediate use by practitioners.  The group recognized the need for research consortia to propel the field of pediatric palliative and hospice care forward into the 21st century and into the embrace of the wider medical community. 

In December 1996, the steering committee approached the National Hospice Organization seeking assistance in making the project a reality.  Under the leadership of Galen Miller, PhD, Vice President of Professional Development and Research, NHO agreed to be the sponsoring organization for the project, which entailed providing administrative support and assistance in obtaining funding and planning for a meeting. Susan Buckley, RN, MS, NHO Technical Assistance Specialist became the staff liaison to the project.  The steering committee, along with Miller and Buckley, began to define the vision of the project, identify the best ways to accomplish the goals, and determine potential sources of financial support.   Having a meeting of experts in pediatric palliative and hospice care was deemed an important first step. 

In the spring of 1997, Miller asked Marcia Lattanzi-Licht, MA, RN, known for her facilitation skills and her hospice work, to be involved as a consultant to the project.  From that point, she facilitated all steering committee conference calls, planned for and guided the actual functioning of the conclave meeting (held in 1998), and communicated with conclave participants.  In August 1998, following Miller%27s departure from NHO, Stephen Connor, PhD, was hired as the new NHO Vice President of Research and Professional Development.  Connor attended the conclave meeting as volunteer, supporting the functioning of the steering committee.   

The ChiPPS Conclave, a two-day meeting held in Texas in fall 1998, involved 35 recognized national and international leaders dedicated to the care of children with life-threatening conditions.  They included physicians, nurses, social workers, mental health care workers, clergy, and parents.  Through surveys and pre-conclave work, participants began developing a framework for identifying and approaching major problems in the field.  During the meeting, participants identified and reached consensus about critical questions and specific challenges in the delivery of pediatric palliative and hospice services and developed strategies to address selected issues.  Multidisciplinary workgroups were formed to continue working on those issues, each one chaired by a member of the Steering Committee.  Reports of workgroup progress were made at each monthly telephone conference of the Steering Committee.

ChiPPS Activities (1999-2002)

 1) Compendium of Pediatric Palliative/Hospice Care

The Compendium, distributed in December 2000, was created to help meet the need for a comprehensive reference on pediatric palliative and hospice care.  The Compendium offers many of the tools developed by the conclave participants at their home settings, as well as the their combined input from the conclave, to provide a “how to” for those new to providing palliative and hospice care. The Compendium is divided into four sections:  (1) pediatric palliative care services; (2) communication, ethics, and decision-making; (3) management of pain and other symptoms; and (4) psychosocial and spiritual care.  Each section has a complete list of references and a lengthy set of appendices.  The final section is comprised of a list of resources and materials that are useful in implementing palliative care programs.

2) Creation and Maintenance of an Interactive Web Site

NHO has developed a ChiPPS section of its web site, which includes “chat rooms,” and bulletin boards devoted to the dissemination of information related to ChiPPS activities.  The chat rooms are very helpful to workgroups for discussing their ongoing projects. 

3) Pediatric Palliative/Hospice Care Institute

An all-day pre-conference institute was held at the 2nd Annual Joint Clinical Conference on Hospice and Palliative Care in Orlando, FL in March 2001.  The institute was developed by the ChiPPS Steering Committee, who also served as faculty.  A second institute is scheduled for the 4th Joint Clinical Conference to be held in Denver, CO, April 10-12, 2003.

4) Work group Projects (1999-2002)

a) Psychosocial/Spiritual/Bereavement Group: • Developed guidelines pertaining to spiritual assessment in pediatric palliative and hospice care.  These were included in the Compendium and published in the Journal of Palliative Care (give citation). • Completed a pilot study, “Fathers experiences in pediatric palliative care.”  The study was funded by UCSF, School of Nursing Research Committee, 1999-2001.  The findings are in review for publication.

b) Pain/Symptom Management and Clinical Care Concerns Group: • Committed to supporting three group members%27 ongoing research projects of group me Algorithms (Seattle), Depression (Sydney), and Chronic pain assessment (US and UK). 

c) Decision-making and Ethics Group: • Developed an annotated bibliography on decision-making and ethics and posted it on NHPCO%27s web site.

d) Education Group: • Developed a curriculum on pediatric palliative and hospice care to serve as the basis for a training program. The components of this curriculum will be pilot-tested as part of the all-day pre-conference to be held in April 2003 at the 4th Annual Joint Clinical Conference on Hospice and Palliative Care in Denver, CO.  Copies of the curriculum will be available at the Conference.

 e) Policy/Administration • Produced a white paper entitled A Call for Change: Recommendations to Improve the Care of Children Living with Life-Threatening Conditions, October 2001.    Located on the NHPCO website, and currently in preparation for publication

With the initial work completed, ChiPPS participants decided that an assessment of the program was in order.  A strategic planning meeting of the Steering Committee, along with Connor from NHPCO, and with Lattanzi-Licht as facilitator, was held in Cincinnati, OH, February 2002.  Several outcomes resulted:

1) ChiPPS cannot support an international focus, but values collaboration and cooperation internationally; 2) The name of ChiPPS was changed to ChiPPS: Advancing Pediatric Palliative care; 3) The vision and mission of ChiPPS were updated; 4) ChiPPS committed to reorganizing into a new structure that included replacing the original steering committee with an Executive Committee.  New members were identified for two-year terms, with some overlap with the original steering committee for the first year; and 5) NHPCO reaffirmed its support of ChiPPS.

Specific projects for 2002-2005 were identified:

1) Reorganize ChiPPS into a new structure; 2) Sponsor a coalition meeting during the summer of 2002 in conjunction with the IOM meeting to respond to the IOM report, When children die: Improving palliative and end-of-life care for children and their families; 3) Develop and distribute an e-newsletter; 4) Design a pre-conference institute on pediatric palliative and hospice care for the JCC meeting in 2003 during which time the curriculum would be tested and made available, and work towards developing a PPC certificate program; and 5) Develop a demonstration project for teaching pediatric palliative and hospice care in rural areas, based on a needs assessment of rural areas. 

A meeting of the new Executive Committee was held in August 2002 in Arlington, VA, following a coalition meeting to respond to the recommendations in the IOM report. Co-chairs are Stacy Orloff, Ed.D. LCSW and Betty Davies, RN, PhD.  Members include Paul Brenner, MDiv; Charles Corr, PhD; Joanne Hilden, MD; Bruce Himelstein, MD; Susan Huff, MSN; Marcia Levetown, MD; Jeanne Lewandowski, MD; Fil Nalewajek, RN MN; Barbara Sourkes, PhD; Suzanne Toce, MD; and Stephen Connor, PhD, NHPCO.  Marcia Lattanzi-Licht facilitated the meeting. 

The vision, mission, and goals for 2002-03 were reaffirmed:

Vision:  ChiPPS will work to concretely enhance the science, practice, and availability of pediatric hospice and palliative care services to families.

Mission:  Through collaborative efforts, ChiPPS will promote education, advocacy, service improvement, and research.

Goals for 2002-03:

1. Design a pre-conference day on pediatric palliative and hospice care to be held prior to the JCC in April 2003;  2. Institute an e-newsletter; 3. Clarify or revise the definition of pediatric palliative care used by ChiPPS, and the Universal Principles as they appear in the Compendium; and 4. Conduct a survey of all NHPCO members about the extent of pediatric palliative care services, as well as benefits of and barriers to such care.  Similar surveys conducted in California and Florida will be used as a prototype.  5. Complete revisions to the pediatric palliative care curriculum; 6. Complete the “how to” manual about developing pediatric palliative care programs.

During this meeting, ChiPPS endorsed the recommendations of the IOM Committee on Palliative and End-of-Life Care for Children and their Families.  Stephen Connor subsequently presented the recommendation to the NHPCO Board. 

Conclusion:  So, now you are up to date on what ChiPPS is, how it began, what it has accomplished, and its current activities.  We will be sending another newsletter at the beginning of 2003, and thereafter every two months.  We ask for your input ... please send information about your program, your most successful practices in pediatric and hospice care, and your questions and concerns.  We will do our best to incorporate your thoughts and feedback in our attempt to share information about pediatric palliative/hospice care. 

Best wishes for the holiday season,

Betty Davies Co-chair, ChiPPS Executive Committee