Access PPC Resources
Project Joy and Hope is the parent agency for the Texas Pediatric Palliative Care Consortium, a collaboration of palliative care professionals from pediatric hospitals and hospices throughout Texas.
PJH Advisory Board member Marcia Levetown, MD, has compiled this list of resources. Let us know if you have additional links to add to this list.
Web Resources on Palliative Care
Basic Information and Articles on Palliative Care:
- 2004 NEJM review article on Pediatric palliative care
http://content.nejm.org/cgi/content/short/350/17/1752 - CHIPPS, the NHPCO’s initiative on pediatric palliative care
http://www.nhpco.org/i4a/pages/index.cfm?pageid=3409 - Pediatric Palliative Care resources from the Center to Advance Palliative Care (CAPC)
http://www.capc.org/palliative-care-across-the-continuum/pediatric-palliative-care/ - Institute for Family Centered Care
http://www.familycenteredcare.org - Association for Children’s Palliative Care
http://www.act.org.uk - Grief Resources
http://www.childgrief.org
http://www.childrensgrief.net
http://www.growthhouse.org - Medical Home Care (From the American Academy of Pediatrics)
http://www.medicalhomeinfo.org/publications/family.html - American Academy of Pediatrics’ statement on Palliative Care for Children
http://aappolicy.aappublications.org/cgi/content/full/
pediatrics;106/2/351 - Clinical Practice guidelines for Quality Palliative Medicine
http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=5058&nbr=3542
http://www.aahpm.org
http://www.hpna.org
http://www.hospicecare.com
http://www.caringconnections.org
http://www.capc.org - Lay press, advocacy:
- Nick Snow, LA times
http://articles.latimes.com/2007/feb/05/health/he-enoughkid5 - Also on Nick Snow and the Act in his name,
http://ourstory.com/thread.html?t=152660 - NPR story
http://www.npr.org/templates/story/story.php?storyId=5630255
- Nick Snow, LA times
PPC Education and Curricula:
- Mentoring at a pedaitric palliative care leadership center via CAPC
http://www.capc.org/palliative-care-leadership-initiative/overview
http://www.ippcweb.org
http://www.cme.utoronto.ca/endoflife/
http://www.mountida.edu/sp.cfm?pageid=688
http://www.aahpm.org/resources/
http://www.aahpm.org/education/curriculum.html
http://www.aahpm.org/about/college.html - Pediatric Pain Management
http://www.ama-cmeonline.com/pain_mgmt/module06/index.htm - Cameron’s Arc. for Residents and community-based pediatricians, from AAP
http://www.aap.org/bst/showdetl.cfm?&DID=15&Product_ID=4340 - Palliative care and pain management education and resources
http://www.cityofhope.org/prc/ - UNIPAC Eight: The Hospice/Palliative Care Approach to Caring for Pediatric Patients
http://www.association-office.com/aahpm/etools/products/unipacflyer.pdf
PPC Training Standards
- http://www.acgme.org/acWebsite/reviewComment/rev_newHOSPICEpr12_03_07.asp
- http://www.acgme.org/acWebsite/downloads/RRC_prRev/New_HospiceandPaliativeMedicineCompanion.pdf
ABP/ABMS
Hospice and Palliative Medicine: The ABP has received approval from the American Board of Medical Specialties (ABMS) to offer a Certificate of Added Qualifications in Hospice and Palliative Medicine. The ABP will partner with several additional boards to co-sponsor this certificate with each board awarding its own certificates but using a common examination administratively developed under the leadership of American Board of Internal Medicine (ABIM). The first exam takes places October 29, 2008 and will be offered biannually thereafter.
Billing and Reimbursement
- http://www.aahpm.org/physresources/coding.html#Physician
- http://www.aahpm.org/pdf/billingform.pdf
- http://www.CAPC.org
- http://www.nhpco.org/files/public/billing_for_np_services.pdf
- Promoting Excellence: Paying for APN services
http://www.mywhatever.com/cifwriter/content/41/pe3677.html#paying
Networking
- AAHPM: Pediatrics Special Interest Group Chair - Jeanne Lewandowski
Jeanne.lewandowski@beaumont.edu - American Pain Society Pediatric Pain SIG
Chair: Steven J Weisman, MD
Children's Hospital of Wisconsin
PO Box 1997
9000 W Wisconsin Ave MS 792
Milwaukee, WI 53201
(414)266-2775
sweisman@chw.org - NHPCO has several meetings and a Pediatric SIG (ChIPPS)
http://www.nhpco.org/
List serves
- International Paediatric Palliative Care list serve:
http://lists.act.org.uk/mailman/listinfo/paedpalcare
PEDIATRIC-PAIN MAILING LIST: The PEDIATRIC-PAIN mailing list is an international Internet forum for informal discussion of any topic related to pain in children. There are currently over 700 members on six continents. Appropriate subjects might include: clinical problems or questions, research problems or proposals, announcements of meetings, book reviews, and political or administrative aspects of children's pain management and prevention. To subscribe to the list, send an e-mail message to: LISTSERV@IS.DAL.CA. The first line of the body of the message should read: subscribe PEDIATRIC-PAIN your-first-name your-last-name
The list is open to any professional or parent (or child!) with interest or expertise in the area. Once you are registered, any message you send to PEDIATRIC-PAIN@IS.DAL.CA will be forwarded to all members of the list. If you have questions or problems relating to the list, please contact Allen Finley at: pediatric-pain-request@is.dal.ca or allen.finley@dal.ca
NHPCO and ChiPPS have launched a pediatric listserve for NCHPP or eNCHPP members who provide services for children with life-threatening conditions and their families. Read more about the listserve and eligibility requirements to participate. Join the Pediatric Listserve
Advocacy
- Advocacy
http://www.childrenshospice.org/ - The Compassionate Care for Children Act
http://olpa.od.nih.gov/tracking/109/senate_bills/session1/s-174.asp - Advance Planning and Compassionate Care Act of 2007
http://www.govtrack.us/congress/bill.xpd?bill=s110-464&tab=summary - AAP’s Federal Liaison: Cindy Pellegrini - 202-347-8600
cpellegrini@aap.org
Research Advocacy and Opportunity
- NPCRC
http://www.npcrc.org - NINR Grants related to PPC
http://dccps.nci.nih.gov/hcirb/sbir/sbir_grant_topics.html
Other Advocacy
- Children's Hospice and Palliative Care Coalition - (includes info for patients, parents, providers)
https://coalitionccc.org/ - Parent self-advocacy
http://www.partnershipforparents.org - Community Coalition Building and Outreach
http://www.pbs.org/independentlens/lioninthehouse/index.htm - International Advocacy and resources
http://www.act.org.uk/content/view/90/35/
Other resources
- http://www.growthhouse.org/
- http://www.promotingexcellence.org/i4a/pages/index.cfm?pageid=1
- Pain management protocols
http://pediatric-pain.ca/ - ChIPPS
http://www.nhpco.org/i4a/pages/index.cfm?pageid=3409 - Resources to develop PPC programs
http://www.whocancerpain.wisc.edu/eng/16_3-4/resources.html - http://www.stronghealth.com/services/palliative/documents/PEDSPainCard_000.pdf
- Royal Children’s Hospital PPC FAQs
http://www.rch.org.au/rch_palliative/index.cfm?doc_id=1650 - Society for Critical Care Medicine
http://www.sccm.org/SCCM/LearnICU/Professionalism/Ethics/ - Peer reviewed monograph, bulletin board, list serve on palliative medications
http://www.palliativedrugs.com - Look under “W” for 2006 monograph from the UK’s Royal College of Paediatric and Child Health on Withholding and withdrawing "Life-sustaining" treatment
http://www.rcpch.ac.uk/Publications/Publications-list-by-title
Outcomes measures for Pediatric Palliative Care Programs
Listed under "Children's Hospital and Regional Medical Center" (in Seattle). You will need to scroll down at the link:
http://www.promotingexcellence.org/i4a/pages/index.cfm?pageid=3310
Books and professional resources
- Oxford Textbook of Palliative Care for Children (Liben, Oxford Textbook of Palliative Care for Children) (Hardcover)
by Ann Goldman (Author),
Richard Hains, Stephen Liben - Palliative Care for Infants, Children, and Adolescents: A Practical Handbook
by Kathleen M. Foley, Brian S. Carter, and Marcia Levetown - Supportive Care of Children with Cancer: Current Therapy and Guidelines from the Children's Oncology Group (The Johns Hopkins Series in Hematology/Oncology)
by Gregory H. Reaman and Arnold J. Altman - Pediatric Palliative Care, An Issue of Child and Adolescent Psychiatry Clinics (The Clinics: Internal Medicine)
by John P. Glazer, Joanne M. Hilden, and Dunya T. Yaldoo - Palliative Care, An Issue of Pediatric Clinics (The Clinics: Internal Medicine)
by Tammy Kang (Hardcover - Oct 31, 2007) - Shelter from the Storm: Caring for a Child with a Life-Threatening Condition
by Joanne Hilden, Daniel R. Tobin, and Karen Lindsey (Paperback - Dec 17, 2002) - Hospice Care Bookshop
http://www.hospicecare.com/bookshop/custom.php?i=139 - Amazon: Pediatric Palliative Care
http://www.amazon.com/s/ref=nb_ss_b?url=search-alias%3Dstripbooks&field-keywords=pediatric+palliative+care&x=0&y=0 - Listing of books and leaflets
http://www.nhpco.org/files/public/ChiPPS/Ped_Marketplace_Flyer_6_7_07.pdf - Books for children on grief and loss
http://www.barrharris.org/barbooks.html - Books for parents and the general public on grief and loss
http://www.barrharris.org/books_parents.html
Provided by PJH Advisory Board member Marcia Levetown, MD