When many people think about Palliative care, they imagine someone later in life, dealing with complicated illness or illnesses. In fact, one can receive a life changing diagnosis at any point in life. Thought leader and patient advocate Dianne Gray has compiled a resource list for those who may need guidance on where to go for information or assistance with pediatric palliative care. You can read her original post in it entirety here.
Where To Start
National Hospice and Palliative Care Organization ( NHPCO https://www.nhpco.org/pediatric )
Here you will find free online Children's Project on Palliative/Hospice Services (ChiPPs) newsletters, NHPCO's Facts and Figures On Pediatric Palliative Care and Hospice, access to online networking, and a 10-module curriculum with content especially for those providers of adult hospice who wish to expand care to include pediatric services. Please see:
NHPCO's Pediatric Palliative Care Online Training Series.
Through the Mary J. Labyak Institute for Innovation at the National Center for Care at the End of Life, a Pediatric Concurrent Care Continuum Briefing was posted in January 2013. Very helpful!
Also at NHPCO's website: Pediatric Standards. Updated standards will be coming out later this year or in early 2014.
Center for the Advancement of Palliative Care (CAPC)
There is now more specialized training in pediatric palliative care being offered at CAPC conferences. According to my sources, content is typically centered on starting and running programs. Hospices interested in expanding pediatric services can also attend pediatric-specific Palliative Care Leadership Center training through CAPC
End-of-Life Nursing Education Consortium (ELNEC)
There are regular ELNEC trainings around the country. Please look online for the pediatric course offerings.
EPEC-Peds is a train-the-trainer curriculum that will be premiering this spring.
It should be more widely available after that. While it was initially written for and tailored to pediatric oncology fellows, it contains a tremendous amount of information in an "accordion" curriculum format that can be customized for different audiences.
Hospice and Palliative Nurses Association (HPNA)
They have a written pediatric curriculum available and they’re currently working on a perinatal curriculum. Great resources!
American Academy of Pediatrics, Section on Hospice and Palliative Medicine
New information and resources are added on a consistent basis. The section is anticipating the first pediatric-specific workforce survey, being conducted in conjunction with the AAHPM (see below).
The section is also incorporating the "family experience and opinion" by fostering the addition of a Parent Advisory Group (PAG), chaired by Blythe Lord and myself, Dianne Gray. We look forward to our collaborative efforts in the coming year. By the way, GREAT listserv participation!
American Academy of Hospice and Palliative Medicine
Updated information forthcoming. The group just met in, March 2013 in New Orleans. Like many organizations they focus on education, advocacy, and public policy as palliative care becomes more mainstream. I have noted an increased collaboration with several other national organizations in an effort to increase access to quality palliative care.
International Children's Palliative Care Network
An incredible network of international clinicians, all dedicated to doing the best they can to provide quality palliative care in areas of the world that are either underdeveloped or underserved. This group is well equipped to provide information for providers who are either resource deficient or struggling to create cohesion. I highly recommend their website and newsletter. Though they are based in the UK and overseas, many, many of the professionals they work with are quick to respond and I have found their collaborative attitude a gift.
State Hospice and Palliative Care Organizations
Should you choose to form your own statewide consortium for pediatric palliative care, know that you are not alone in your mission.
Whether you call yours a consortium, a network or something entirely different, know that the road to improved pediatric palliative care is easier when you share the journey with colleagues. Here is my list. Feel free to add, edit or send me additional info if you like.
The following states already have statewide consortiums/coalitions/organizations. Websites have been listed, if I have the site information.
The master list can be forwarded to you by contacting Gwynn Sullivan at NHPCO. Her email is: firstname.lastname@example.org.
The states with pediatric palliative care consortiums are:
- California: Children’s Hospice and Palliative Care Coalition www.chpcc.org
- Delaware: Infant, Maternal, and Pediatric Advanced Care Team
- District of Columbia: District of Columbia Pediatric Care Collaboration www.dppcc.org
- Florida: Florida Pediatric Palliative Care Consortium www.floridahospices.org
- Illinois: Greater Illinois Pediatric Palliative Care Coalition www.gippcc.org
- Kansas: Kansas Hospice and Pediatric Palliative Care Coalition
- Massachusetts: Pediatric Palliative Care Network www.mass.gov/ppcn
- Minnesota: Pediatric Palliative Care Coalition of Minnesota www.mnhpc.org
- New York: www.hpcanys.org Currently building a pediatric palliative care network
- North Carolina: Pediatric Palliative Care Coalition of NC
- Ohio: Ohio Pediatric Palliative Care and End of Life Care Network ) www.oppen.us/aws/MCA/pt/sp/youth_oppen
- Pennsylvania: Pediatric Palliative Care Coalition http://www.ppcc-pa.org/
- Texas: Texas Pediatric Palliative Care Consortium www.joyandhope.org
- Washington: Contact Providence Hospice, Maureen Horgan: email@example.com
- Wisconsin: Bear Courage https://bearcourage.com
Companies Serving the Pediatric Palliative Care Field
While it may be daunting to provide care for seriously ill children, know that you are not alone in this arena either.
Many "vendor" companies in the arena of hospice and palliative care have also heard the national request for specific pediatric hospice and palliative care information and services. While this is far from a complete list, here is a listing of a few companies that I know have specially trained staff or services in the peds palliative care arena.
Mumms: www.mumms.com mumms® provides hospice with the opportunity to document care for pediatric patients using forms created with pediatric metrics, pediatric-specific assessments, and pediatric-specific Care Plans that include pediatric care-appropriate goals and interventions.
Hospicescript: https://www.optum.com/solutions/provider/hospiscript.html Specially trained pediatric hospice and palliative care pharmacist as part of staff. 24/7 call in service for pediatric patients available. More pediatric palliative care information becoming available Fall, 2013.
Outcome Resources: www.outcomeresources.com Specially trained pediatric hospice and palliative care pharmacist on staff. 24/7 access, client web info, with educational peds palliative care information online. More pediatric palliative care information becoming available Fall, 2013.
ProCareRX: www.procarerx.com Specialized information re: pediatric palliative care; Printed and other educational materials available, especially on pediatric pain management.
OnePoint Patient Care: www.oppc.com Trained pediatric hospice and palliative care pharmacist on staff.
Quality of Life Publishing: www.qolpublishing.com Booklets and books focusing on the provision of pediatric palliative care toward the end of life.
And What About The Internet?
I'm sure I've left off more than a few organizations and companies that truly take pediatric palliative care to heart. So Google to your heart's content in your quest to find more information.
In this category, I add "YouTube" as a resource. Yes, really! I stopped counting at 30 different YouTube videos on the topic of pediatric palliative care. And guess what? They're free, as is the content on the website, www.opentohope.com, a site by the Open To Hope Foundation. They list radio and television shows and written articles on the topic of loss of a child/loss of a sibling; And, they’ve interviewed some of the world's best psychologists and grief experts in their quest to provide free information to those who need help 24/7. Check out their YouTube channel as well.
Here is a note from Dr. Sarah Friebert, Pediatric Palliative Care specialist, and Director of the Haslinger Family Pediatric Palliative Care Division, Akron Children's Hospital:
"Calling a pediatric palliative care program at a nearby children's hospital is never the wrong thing to do, nor is reaching out to hospice programs with dedicated pediatric teams. The large hospice I work with for example, regularly takes calls from other smaller programs and teams about these very questions. Sometimes they host visitors from other hospices who want to, observe learn about policies, etc."