Pediatric Palliative Care Resources Guide

Written by Dianne Gray for the Louisiana-Mississippi Hospice and Palliative Care Organization Journal

As you may have read in my article in this edition of the LMHPCO Journal, I am an advocate for pediatric palliative care. Why? Because my son and our family were the recipients of quality pediatric palliative care? Because pediatric palliative care made everything in our world "perfect"? While we did receive quality pediatric palliative care that is not why I advocate for it. And no, it did not change the outcome of Austin's disease process. He still died despite all of our best efforts and care.

Then you may ask, why would she donate time advocating for increased access to pediatric palliative care, if it did not save his life? Because we went nine years without it and during that time, Austin suffered profoundly.

Our entire family suffered, including my healthy daughter, whose formative years were spent watching her older brother struggle in significant pain. This is as much for her, and the thousands of healthy siblings like her, who simply see "too much" unnecessary suffering due to a lack of pediatric palliative care services within their own families and communities.

Pediatric palliative care is, in its essence, "family care" as it provides pain management for the patient, and psycho-social and spiritual care to the patient and family alike. It looks at the wellness of the entire family. Pediatric palliative care teams provide a network of care that embraces the patient as a whole being, not just one system functioning separately from another.

It is not my intent to oversimplify or negate a very complicated (and sometimes frustrating) Medicaid reimbursement plan. As well, I do fully comprehend (and sigh deeply about) the inherent complexities of starting a full-on pediatric palliative care program.

What I am asking you to do is to start or continue your educational efforts as a step toward the provision of care for your community's seriously ill children. Then, when you feel ready, or maybe even when you are not-

I beg you to jump into the arena of pediatric palliative care by providing care for one child. Then maybe two and so on, as you and your team are comfortable. I request this because I was,there; I AM there, still surviving, following the death of my child.

I believe with all of my heart, that had we not received supportive care during the last years of his life, we would not be able to exist in today’s world with some semblance of mental health and wellness following gut wrenching loss. I thank you sincerely for considering my request to expand your services, where and when possible.

You will not only be trying to enhance the quality of one child's life. You will, most likely, be affecting one entire family's generational experience, regardless of the ability to save the physical being of their much loved, seriously ill child.

Dianne Gray
CEO, Hospice and Healthcare Communications
President, Elisabeth Kubler-Ross Foundation
Hospice and Palliative Care Advocate, Bereaved Parent


International Children’s Palliative Care Network,
Advocacy Committee
NHPCO’s ChiPPs Leadership Council
American Academy of Pediatrics, Section on Hospice and Palliative Medicine,
Co-Chair, Parent Advisory Group

My Guide to Pediatric Palliative Care Resources...

This is my own personal "list". In no way is it a complete listing of resources, yet we all have to start somewhere, so I thought I'd share this with you, if you'd like to add to it, please do so, by emailing me at: This is simply a resource guide for those of you who are looking to begin or expand your scope of services to provide care for seriously ill children. The important point here is to remember you are not alone in your quest. There are hundreds of individuals around the country who have been where you are; and, I'm sure at times, they too, have felt daunted by the thought of caring for seriously ill children.

I assure you that if you pick up the phone or send an email, you will begin building your own supportive network. The pediatric palliative care providers I have worked with are very friendly and responsive. They're quick to offer supportive advice and resources and I believe you will find this to be your experience, too!

Where To Start

National Hospice and Palliative Care Organization ( NHPCO )

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:

The states with pediatric palliative care consortiums are:

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:; 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.

Hospiscript: www.hospiscript:com; 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:; 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:; Specialized information re: pediatric palliative care; Printed and other educational materials available, especially on pediatric pain management.

OnePoint Patient Care:; Trained pediatric hospice and palliative care pharmacist on staff.

Quality of Life Publishing:; Booklets and books focusing on the provision of pediatric palliative care toward the end of life.

There are, I am sure, other companies that provide information and education on the topic of pediatric palliative care. This is simply my list…and if you have further information to add, please email me at: and I will research the info and add that company to the list.

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,, 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.

What About Closer To Home?

Here is information that you can use as you build your own collaborative network:

According to the National Hospice Locator as part of Hospice Analytics research, as of 3/18/13 there are 383 hospices out of 5217 hospices nationally (7%) that provide pediatric services. See the tables below for the hospices in Louisiana and Mississippi that have indicated on their membership applications the availability of pediatric services.

How many children's hospitals are there?

In Louisiana, there are two:
Children's Hospital of New Orleans, New Orleans; and, Our Lady of the Lake Children’s Hospital, Baton Rouge

In Mississippi, there is one:
Blair E. Batson Hospital for Children at the University of Mississippi Medical Center, Jackson

And finally, 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."

In closing, I thank you from the bottom of my heart as you ponder the expansion of care for the seriously ill children in your community. They need you and may not even know how much, because they don't know what care is available to them.

Remember, you are not alone in your quest to provide increased access to pediatric hospice and palliative care.

You have parents in your communities who are there to ensure that your programs are patientand family centric and you have a nationwide network of support as you venture forward.

This really is a wonderful time to step forth into the world of pediatric hospice and palliative care!

I wish you peace in your journey,

Dianne Gray