Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Tools and Resources Related to This Issue's Contributors:

1. ChIPPS' Universal Principles of Pediatric Palliative Care in draft format:

Reprinted with permission of the National Hospice and Palliative Care Organization (formerly National Hospice Organization) Alexandria VA. Contact Stephen Connor, PhD, at 703-243-5900 for permission to reprint. © Copyright 2000. All rights reserved. Developed by members of the NHPCO ChIPPS Work Group (Children's International Project on Palliative/Hospice Services). Final version is in: Children's International Project on Palliative/Hospice Services (ChIPPS). Compendium of Pediatric Palliative Care. Alexandria, VA: National Hospice and Palliative Care Organization, 2000, 3.

2. ACT: The Association for the Care of Children with Life-Threatening Diseases and their Families
http://www.act.org.uk/
Featured Innovator, Dr. Ann Goldman, is Vice Chairman of this organization. ACT is an umbrella organization working to improve the care and services for all children in the UK with life-threatening conditions and their families. The website has a variety of information including a newsletter, ACT NOW, as well as a publications page where readers can order items via the internet. The Guide to the Development of Children’s Palliative Care Services can be ordered at http://www.act.org.uk/actwebnew/publications.htm

3. NHPCO: The National Hospice and Palliative Care Organization
www.nhpco.org/
Formerly the NHO, this is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the US. This organization has sponsored the ChIPPS project (The Children’s International Palliative Care/ Hospice Project), which is the focus of the International Perspectives interview with Dr. Marcia Levetown in this issue. The Ethics and Decision-Making Subgroup Bibliography is available at http://www.nho.org/chippsbibsum.htm. The NHPCO has also put together a tip sheet entitled "What You Can Do Now ..." for parents coping with a child's life-threatening condition. This tool is available in PDF format at www.nhpco.org/public/articles/Parenttips.pdf.

4. Royal College of Paediatrics and Child Health
http://www.rcpch.ac.uk/rcpch/
This is the British national academic organization of pediatricians. The College developed The Guide to the Development of Children’s Palliative Care Services with ACT. The website also lists forthcoming meetings and conferences and highlights its book, Medicines for Children, soon to be reprinted in 2000.

Other Relevant Web Resources and Tools:

1. About.com
http://dying.about.com/health/dying/msubchldloss.htm
A commercial site that has links to sites that deal with grief and bereavement over the loss of a child.

2. The American Academy of Pediatrics
http://www.aap.org/default.htm
This is the American policy and academic organization for pediatricians. The Academy’s policy statements are available on-line in full text, including the March 1994 "Guidelines on Forgoing Life-Sustaining Medical Treatment (RE9406)" at http://www.aap.org/policy/00118.html

3. The Association of Children's Hospices
http://www.childhospice.org.uk/ An association that brings together over thirty voluntary sector organizations in Great Britain dedicated to the care of terminally ill children.

4. Candlelighters Canada
http://www.candlelighters.ca/
Created by The Childhood Cancer Foundation in Toronto, Canada, Candlelighters Canada is a non-profit, national support and information network with international affiliation dedicated to enhancing the quality of life of children and teens with cancer, their families and friends. The site offers resources on children and family issues, education, insurance, emotional support and current information about cancer.

5. Children's Hospice International
http://www.chionline.org/
This organization is based in Alexandria, Virginia and was founded to provide a network of support and care for children with life-threatening conditions and their families. The site is organized with information for children as well as for adults. The "Kids" section allows the viewer to enter a cartoon house and find many rooms with various resources. Bibliographies, videos and books can be found in the library, children’s art in the art gallery, discussion in the conference room. There are many links to sites for children in the "Treasure Chest". The site also offers a documentation index which includes, "Guidelines for How to Tell Children" at http://www.chionline.org/chi-formal/GUIDELIN.HTM. The site also has links for health care professionals and a discussion board. Much of the site is currently under construction.

6. Contact a Family
http://www.cafamily.org.uk/
A British charity site with resources related to children with disabilities, rare diseases and genetic disorders. This site gives access to family support groups and contains many links to databases of rare diseases. It includes listings for children’s hospice and respite care in the UK.

7. Hospice Foundation of America - Seventh Annual National Bereavement Teleconference Living with Grief: Children, Adolescents, and Loss
http://www.hospicefoundation.org/virtual_html/teleconference.htm
Created by the Hospice Foundation of America, this teleconference considered the range of child and adolescent loss, as well as ways in which developmental level may affect responses to loss. It presented practical advice and interventions to empower children and adolescents with effective coping skills.

The teleconference was held on Wednesday, April 26, 2000 from 1:30 p.m. - 4:00 p.m. EDT. Teleconference site and program information is available at the website listed above.
For questions, e-mail: telecon@hospicefoundation.org

8. The Institute for Family-Centered Care
http://www.familycenteredcare.org
Based in Bethesda, Maryland this organization serves as a central resource for both family members and health care professionals. Their focus is on pediatric and maternal-child projects and the site includes many resources for families and professionals. The institute publishes a print newsletter entitled Advances in Family-Centered Care.

9. International Pediatric Association
http://www.ipa-france.net/
The International Pediatric Association (IPA) is an organization of 147 national pediatric societies and 18 international subspecialty and regional pediatric societies. Its goal is to improve the health and welfare of children throughout the world through educational and advocacy. The site offers details on publications and upcoming conferences as well as on-line issues of International Child Health: A Digest of Current Information from 1995-1998 and one article from 1999.

10. Pediadol
http://www.pediadol.org/
This French-language website funded by the French government has useful resources and publications on treating pain in children for health care professionals. These include published pain assessment scales and ordering information for a video on the use of morphine in children.

11. Pediatric Pain- Science Helping Children
http://is.dal.ca/~pedpain/index.html
The Pediatric Pain Research Lab is located in the IWK Grace Health Center and the Psychology Department of Dalhousie University in Halifax, Nova Scotia, Canada. This site offers extensive professional, research and self-help resources on pediatric pain. Specifically, the Pediatric Pain Sourcebook of Protocols, Policies and Pamphlets allows viewers to search by category of document, such as "guidelines" to find recent clinical guidelines which can be downloaded in full. In addition, readers benefit from the submitter’s commentary as well as peer-review comments about the document. For example, Clinical Practice Guidelines: The recognition and assessment of acute pain in children. Recommendations. 1999, produced by the Royal College of Nursing Institute is available here. Information about the Pediatric Pain Letter is available at http://is.dal.ca/~pedpain/pplet/pplet.html. Two booklets for families: Making Cancer Less Painful: A Handbook for Parents and Pain, Pain Go Away: Helping Children with Pain are available at http://is.dal.ca/~pedpain/selfhp.html.

12. Warszawskie Hospicjum Dla Dzieci - The Warsaw Children’s Hospice
http://www.hospicjum.waw.pl/
Most of the site is in Polish; however, there is an "English version" button, which leads to the Report on the Belarussian Children’s Hospice in Minsk, December 1998 by Tomasz Dangel, MD, PhD.