Pediatric Palliative Care

The mission of LMHPCO is to improve the quality of hospice & palliative care in Louisiana & Mississippi.

Gulf States Pediatric Palliative Care Consortium


Vision
:  All children and families in the gulf state region facing serious illness will have access to comprehensive support through the entire duration of serious illness both in the hospital and the home with the goal to prevent, anticipate and mitigate suffering in all its forms.

Mission:  We will achieve our vision through an interdisciplinary workforce advocating for every child and family to have access to the support necessary to live as well as possible with serious illness.

Our interdisciplinary workforce will:

  • Strive to advance education of the gulf coast community to  provide quality clinical care both in our hospitals and in the home

  • Collaborate with our Gulf Coast community to advance education

  • Engage in advocacy

  • Provide leadership and expertise in the region

  • Identify utilization and gaps within hospice and palliative care in Louisiana

  • Send questions to Pediatrics@LMHPCO.org 

Definition of Pediatric Palliative Care per NHPCO Guidelines:

Beneficial at any stage of a serious illness (and at any age), palliative care is an interdisciplinary care delivery system designed to anticipate, prevent, and manage physical, psychological, social, and spiritual suffering to optimize quality of life for patients, their families and caregivers. Palliative care can be delivered in any care setting through the collaboration of many types of care providers. Through early integration into the care plan of seriously ill people, palliative care improves quality of life for both the patient and the family.

Resources for Pediatric Hospice and Palliative Care

Pediatric Hospice Care Resources
Medicaid Links

Clinical Guidelines & Helpful Resources:

 

Education & Training Resources

In-Person Training
Title Website Description
Education in Palliative and End-of-Life Care Program (EPEC) epec.net/epec_pediatrics.php An annual offering of 23 core and 2 elective topics in pain and symptom management in pediatric palliative care taught as a combination of distance learning modules in-person conference sessions. Curriculum translated into French and Spanish. More here: https://www.sciencedirect.com/science/article/abs/pii/S0885392419303136.
Program in Palliative Care Education and Practice (PCEP) Pediatric Track http://www.hms.harvard.edu/pallcare/PCEP/PCEP.htm Week-long, in-person learning opportunities for clinician educators who wish to become expert in the practice and teaching of comprehensive pediatric palliative care.
End-of-Life Nursing Education Consortium Pediatric Palliative Care Train-the-Trainer (ELNEC-PPC) http://www.aacn.nche.edu/elnec/trainings/national#PEDIATRIC Train-the-trainer format pediatric palliative care in-person curriculum for nurses.
Pediatric Pain Masters Class http://noneedlesspain.org/ppmc/ Education in pharmacological, medical, psychosocial and integrative therapies for pediatric patient pain management from a holistic and interdisciplinary perspective.
National Hospice and Palliative Care Organization (NHPCO) Pediatric Palliative Care Training (PPCT) http://www.nhpco.org/childrenspediatricschipps/pediatric-palliative-care-training-0 Two-day intensive pediatric training on the provision of quality care to infants and children facing life-threatening conditions and their families.
Online Training – Pediatric Specific
Title Website Description
CSU Institute for Palliative Care – Adult to Pediatric: Preparing Palliative Care Professionals to Care for Pediatric Patients https://csupalliativecare.org/programs/pediatrics/ Online curriculum that equips hospice and palliative care practitioners with the knowledge and resources to ensure young patients and their families receive the best care possible
International Children’s Palliative Care Network (ICPCN) E-Learning Programme http://www.icpcn.org/icpcns-new-elearning-programme/ Online courses on pain assessment and management in children, childhood development, communicating with children, and pediatric grief and bereavement.
Vision of Hope: Integration of Palliative Care in Chronic Pediatric Disease http://www.bioethicsinstitute.org/research/projects-2/hope PPC curriculum specifically focused on patients with Sickle Cell Disease or Duchenne Muscular Dystrophy. Short interactive modules.
Oncotalk http://depts.washington.edu/oncotalk/ Learning modules with pearls and pitfall examples to foster medical professional’s comfort in discussing difficult topics with patients.
Pediatrics Ethics Consortium (PEC) http://www.pediatricethics.org/ Online resources concerning ethical issues – offers relevant to palliative care.
Online Training – General Palliative Care
Title Website Description
NHPCO’s End-of-Life Online (E-OL) https://www.nhpco.org/online-learning/ Online courses and webcasts relevant to palliative care to include clinical and psychosocial/spiritual domains. Not Pediatric specific.
Stanford Palliative Care Training Portal http://palliative.stanford.edu/ Training portal on an array of topics from opioid conversion, dyspnea, clinical prognostication, and care transitions.
Online Resources – Pediatric Specific
Title Website Description
AAP Policy Statement: Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations https://pediatrics.aappublications.org/content/pediatrics/132/5/966.full.pdf Guidelines and recommendations from AAP on PPC and PHC
DFCI Blue Book – Pocket Clinical Resource http://pinkbook.dfci.org/ Pocket clinical resource for pediatric pain and symptom management. Same website also has two adult pocket guides: pain management and nausea and vomiting symptom management.
Association for Children with Life-Threatening or Terminal Conditions and Their Families (ACT) Professional Resources

http://www.togetherforshortlives.org.uk/professionals/resources

 

Downloadable symptom control guidelines, palliative care commissioning reports, and patient education pages.
Pediatric Decision Aids – Coalition for Compassionate Care of CA https://coalitionccc.org/pediatric-decision-aids/ PDF Decision Aids for breathing machines, CPR, and tube feeding
UK Association for Pediatric Palliative Medicine (APPM) https://www.appm.org.uk/training/combined-curriculum/ Online guide for pediatric palliative medicine competencies, including areas for competency and skill levels expected at different points in training
Courageous Parents Network

www.courageousparentsnetwork.org

 

Resource for parents of seriously ill children. Many tools for providers to learn and/or use with families also.
Workshops in End-of-Life Training for Health Professionals in Children’s Hospitals https://open.umich.edu/find/open-educational-resources/medical/workshops-end-life-training-health-professionals-childrens-hospitals Online modules specifically to guide clinicians through end-of-life for newborns, children, and adolescents who die in the hospital.

NINR Palliative Care for Children

Palliative Care: Conversations Matter

https://www.ninr.nih.gov/newsandinformation/conversationsmatter#.VY6-pUay4nJ

 

Tools and resources to help clinicians discuss palliative care with pediatric patients and their families.

Download or order complimentary print copies in English or Spanish of customizable tear-off pad for Palliative Care: Conversations Matter ®

Online Resources – General Palliative Care
Title Website Description
American Academy of Hospice and Palliative Medicine (AAHPM) Focused Assessment and Study Tool (HPM FAST) http://aahpm.org/self-study/hpm-fast Boards-focused learning modules with accompanying multiple choice study questions.
Center to Advance Palliative Care (CAPC) https://www.capc.org/training/ Online palliative modules including both operational and clinical topics. Nothing pediatric-specific.
Clinical Practice Guidelines for Quality Palliative Care, 4th Ed. http://www.nationalcoalitionhpc.org/ncp/?utm_source=NCP+Clinical+Practice+Guidelines+&utm_campaign=NCP+Guidelines&utm_medium=email PDF guidelines, primarily adult-focused but the 4th edition is the first to include pediatrics also
MJHS Institute for Innovation in Palliative Care – PDF Resources https://www.mjhspalliativeinstitute.org/ccb/professional-resources-2/?mypage=1 Online resources for palliative care topics, mostly clinical and adult-focused.
Palliative Care Online Journal Club http://journalclub.pallcare.info/index.php Filtered and organized articles on palliative care for current, convenient browsing. Includes adult palliative care.
Vital Talk http://vitaltalk.org An array of talking maps and teaching maps relevant to conflict resolution, bearing witness, navigating emotions, and family conversations.
Certificate Programs
Title Website Description
University of Washington Graduate Certificate Program in Palliative Care, Pediatric Track www.uwpctc.org 9-month interprofessional program with a combination of online and distance learning as well as three in-person workshops.
Program Development
Title Website Description
Palliative Care Leadership Centers https://www.capc.org/palliative-care-leadership-centers/ A national initiative of the Center to Advance Palliative Care (CAPC) for year-long palliative care team mentoring with in-person visits, webinars, and virtual office hours.
CAPC Pediatric Palliative Care Delivery Guide – Hospital-Based https://www.capc.org/toolkits/designing-a-pediatric-palliative-care-program/ Online resources, mostly members-only, for the development of a hospital-based PPC team. Guidance on program financing, making the case to C-suite, program design, program marketing, program measurement, etc.
Professional Organization Partnerships
Listing of Professional Organizations Website
American Academy of Hospice and Palliative Medicine (AAHPM) – Pediatric Special Interest Group http://aahpm.org/communities/pediatric-sig
American Academy of Pediatrics (AAP) – Section on Hospice and Palliative Medicine http://www2.aap.org/sections/palliative/
American Pain Society Shared Interest Groups (Palliative Care and Pain in Infants, Children, and Adolescents SIGs) http://americanpainsociety.org/get-involved/shared-interest-groups/overview
American Society of Pediatric Hematology Oncology (ASPHO) Palliative Care Special Interest Group http://aspho.org/membership/special-interest-groups/palliative-care
Center to Advance Palliative Care (CAPC) – Pediatric Palliative Care https://www.capc.org/topics/pediatric-palliative-care/
Children’s Hospice and Palliative Care Services Project (ChiPPS) http://www.nhpco.org/pediatric
Children’s International Project on Palliative/Hospice Services Workgroup http://www.promotingexcellence.org/chipps/
Children’s Hospice International (CHI) http://www.chionline.org/about-chi/
Hospice and Palliative Nurses’ Association (HPNA) http://hpna.advancingexpertcare.org/
Institute for Patient- and Family-Centered Care (IFCC) http://www.ipfcc.org/
International Children’s Palliative Care Network (ICPCN) http://www.icpcn.org/
National Consensus Project for Quality Palliative Care (NCP) http://www.nationalconsensusproject.org/
National Hospice and Palliative Care Organization (NHPCO) http://www.nhpco.org/
National Pediatric Hospice and Palliative Care Collaboration (NPHPCC) http://hpna.advancingexpertcare.org/national-pediatric-hospice-and-palliative-care-collaborative/
National Palliative Care Research Center (NPCRC) http://www.npcrc.org/
Social Work in Hospice and Palliative Care Network (SWHPN) http://www.swhpn.org/

 

 

 

Webinar: Pediatric Palliative Care

 

Hospice and Palliative Care Terms and Helpful Videos

 

 

 

TOOLKITS:

 

For Families from Providers:

 

Birth Plans:

 

 

Helpful links for families facing serious illness:  

Courageous Parents Network

 

Pediatric Palliative Care Program Development:

 

Position Statements

Policies

 

HPM TERMS IDENTIFIED and Helpful Distinctions:

 

VIDEO –What to say and Do; https://youtu.be/7kQ3PUyhmPQ

Patient Perspectives: The Shu Family’s Palliative Care Story  https://soundcloud.com/get-palliative-care/a-quality-life-episode-2-the-shu-familys-palliative-care-story

TOOLKITS:

Brochure

 

Helpful links to BOOKS for children/families:  

Courageous Parents Network

FIND A HOSPICE PROVIDER

FIND A PALLIATIVE CARE PROGRAM

CONTACT LMHPCO

 

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