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July 2003

ChiPPS Newsletter #4

July, 2003

Hello!   We hope this newsletter finds you enjoying the warmth of the summer sun and a more relaxing pace.  In this newsletter, we want to share with you the results of a project finalized just this week!  

1. Definition of and Principles for Pediatric Palliative Care

You will be familiar with the Universal Principles of Palliative Care that were included in the Compendium of Pediatric Palliative Care (Section 1, page 3).   We decided that these principles were in need of some refinement, and that a definition of pediatric palliative care was necessary.  Consequently, a definition was developed for the Education and Training Curriculum for Pediatric Palliative Care.  And, now, we have a revised set of principles.  We hope that you will find this document valuable in your own work.

The National Hospice and Palliative Care Organization CHIPPS Executive Committee supports the following:

DEFINITION OF PEDIATRIC PALLIATIVE CARE

Pediatric palliative care is both a philosophy of care and an organized program for delivering care to children* with life-threatening conditions.  This care focuses on enhancing quality of life for the child and family, minimizing suffering, optimizing functions, and providing opportunities for personal growth.  As such, it can be concurrent with life-prolonging care or as the main focus of care.  Pediatric palliative care is achieved through a combination of active and compassionate therapies intended to comfort and support the child, as well as family members and other significant people in the child%27s life.  Effective management of pain and other distressing symptoms, together with psychosocial and spiritual care are of critical importance beginning at diagnosis and continuing throughout the entire course of a child%27s life and beyond.  Therapies should take a holistic approach, assisting children and families in fulfilling their physical, psychological, social and spiritual goals while remaining sensitive to personal, cultural and religious values, beliefs and practices.  Pediatric palliative care affirms life by supporting the child%27s and family%27s goals for the future and hopes for cure or life prolongation.  This type of care neither hastens nor postpones death; instead, it aims to guide and assist the child and family in making decisions that enable them to work towards their goals during whatever time they have remaining.

Pediatric palliative care is planned and delivered through the collaborative efforts of an interdisciplinary team including the child, family and caregivers.  Effective pediatric palliative care also provides support for caregivers, allowing them to work through their own reactions to the situations they encounter and the care they are providing.

* “Children” refers to fetuses, infants, children and adolescents.

 

PRINCIPLES OF PEDIATRIC PALLIATIVE CARE

  • Pediatric Expertise

Care is focused on the intersection between providing excellence in pediatric care and palliative care, serving children, inclusive of fetuses, infants, children, and adolescents, diagnosed with a life-threatening condition and their family members, from the point of diagnosis through bereavement.

  • Family Centered

Includes the child and family as one unit of care, respecting individual preferences, values, and cultural beliefs.  This includes decision-making regarding the goals and plan of care.

  • Organized around a Holistic Model of Care

Plan of care addresses the person as an entire being, promoting physical, psychological, social, developmental, cultural, and spiritual healing.

  • Delivered by an Interdisciplinary Team

Child and family are integral members of the team. Members of disciplines providing care have skills, experience, and educational training to ensure high quality pediatric palliative care and to facilitate coordination and continuity of care, in whatever setting is desirable and/or appropriate to meet the needs of the child and family. Access to care is available 24 hours a day, seven days a week, and is supported by adequate funding and appropriate policies.

  • Enhances Quality of Life

Strives to enhance quality of life for the child and family, as only they can determine it to be. Minimizes sources of distress and suffering. Creates opportunities for personal growth and sharing in the essential experiences of life, family, and childhood within the constraints of a life-threatening condition.

  • Supports Research, Education, and Advocacy

Committed to improve care and establish best practices in palliative care for children living with life-threatening conditions and their families.

2. Goals and projects for 2003-04

We are currently thinking about the work for the coming year and will be developing a plan during the next couple of months.   We are very eager to hear about any ideas that you might have for ChiPPS.  Please share with us any thoughts, ideas, or suggestions! 

Look for the next newsletter in the fall.   In the meantime, enjoy the summer!